EXPRESSING YOUR THOUGHTS and SEEKING CLARIFICATION

The release and freedom that expressing one's thoughts can have, I find, is extremely beneficial. Don't worry if some of the recipients think your a bit "off the wall". At the end of the day, it is better to do so, rather than bottling up the thoughts / emotions/ confusion, as this can quickly lead only to frustration and resentment. This applies to both non dementees, as well as members of the dementia club. No doubt the non dementiates will find a  more diplomatic manner in which to do this, than I do. However, the end result will I am sure be just as beneficial. I find it interesting that, nowadays, if someone is equally obnoxious to me as, apparently, I may have been to them, it does not create a major issue as far as I am concerned. I appreciate and value, what I view, as their honesty. Tact and diplomacy are further down my pecking order of importance, these days, than openness and honesty of thought and view.

I suppose this notable change in approach, may once again, be a tactic to minimise the risk of confusion. While previously, the complexity and diversity of others psychological influences on their approach to verbal communication, I always found stimulating and interesting. However, this is no longer the case. I now have a tendency to insist that people say what they mean and therefore mean what they say. The literal meaning of what is said is of far more significance and importance to me in verbal communication, than previously. The mental stimulation formally gained from unravelling the "music behind the words", no longer stimulates, it now only tends to frustrate.

I became acutely aware of the above, once again, in a social setting, while having dinner with friends in their home yesterday evening. I found that on a number of occasions, a throw away remark by one of the other guests would prompt my request for clarification of exactly what it was they meant. After a number of such instances, the fellow guest started to indicate their frustration at my requesting that they clarify what it was precisely they were saying and the point they were making. The person concerned is someone who knows me quite well and of the issues I have in relation to verbal communication and understanding. However, in this setting, they obviously found it more difficult to cope with these requests for clarification. On the one hand, I understand their frustration, on the other, unless clarification is sort when required, the misunderstandings that arise may have far worse consequences.

It is occasions like that mentioned above, that can tend lead one to seek further isolation in one's own company, as a more satisfactory option, rather than maintaining the already reducing social circle. However, the risks and consequences of cutting oneself off further, socially, not only for the dementee but, as importantly, for my my wife and carer, are equally unsatisfactory.  

It may be that this is a phenomena  is shared by other fellow dimentees? If so, then to any carers, be they health professionals, or relatives, I suggest that, if you find the dementee you are looking after, has, or starts with the above tendencies, then it may be for the same reasons that I have identified in my own case.

Tomorrow is New Years Eve and my wife and I are going to see in the New Year with four other trusted and understanding friends, who are happy with "straight talking", so it should be a trouble free start to 2012!

A happy and healthy 2012 is wished for any readers of this blog - thank you for sharing in my "Good Life With Dementia".
JSAFGA  

THOUGHTS AS THE NEW YEAR APPROACHES

Another New Year approaches this coming weekend. What does it have in store for all of us. Personally, I do not look forward to it in trepidation or with a sense of either elation or expectation. I find, even more so these days, to be able, in my head, to be prepared to experience the unexpected. I have no use for planning too far ahead or creating unnecessary expectations of oneself or of others. A life of unrealistic expectations will only disappoint and frustrate. One must not have unrealistic expectations of oneself, nor for that matter, of others understanding of you. One cannot have a full understanding of how, when or where the dementing journey will lead, or the pace at which significent milestones will be reached. This need not be disconcerting, if one is able and prepared to "go with the flow". To follow this approach may help avoid  or at least reduce the personal impact on reaching different stages of the condition's progress.

Having said the above, while at one level I believe the above laid back approach applies to myself, there are in fact major contradictions in reality. If I am so philosphical and calm about future events etc, then why does the slightest alteration to arrangements on a day to day basis seem to agitate me so. Interestingly, I find these relatively minor adaptations difficult to handle. I find, increasingly, I rely on the certainty, reliability and concreteness of arrangements and what people say. A black and white, certain, approach to matters, I find far more reassuring and easier to cope with, than more flexible arrangements. I have an increasing need and expectancy of individuals to say what they mean and therefore to mean what they say. Elements of social niceties, I find, increasingly, difficult  to maintain. These relate mainly to responding to what other individuals may have said. For example, if I suspect someone has said something for effect, rather than what they truly mean / believe, then I find it difficult not to say so.

My immediate family, including my young adult grandchildren, have adapted magnificenly to the slight and in some cases the apparently discernable personality changes that have taken place in the past few years. This a source of great comfort, knowing that I can continue to be totally relaxed and be myself in their company. This has been particularly important during the recent festive period.

HAPPY 2012
JSAFGA

MEMORIES

Christmastide, invariably has the effect of summoning up memories, both good and not so good, for most people. It affords a time, amidst the hustle and bustle, if only briefly, to remember times and people from both our present and past life. For some, this can be as traumatic as it can be enjoyable for others, dependent on their individual life's journey so far.

I am increasingly finding that, even though my short-term memory retention is gradually diminishing, the long-term memory of events, places and people from times long past, is increasingly active. Now the other interesting and beneficial aspect is that the clarity of things pleasant from the past is the main focus and the few unpleasant experiences have gradually dissipated, to the same degree that ability to recall the positive and enjoyable times and relationships has increased. Whether this is purely as a result of my particular positive psychological make up and attitude to life, I do not know. Maybe it is something that the majority of Dementees experience - interesting research project for some clinician maybe?!!

The above, is a positive aspect of the disease as far as I am concerned. If clarity of memory thought is, generally, only available to the positive aspects of one's past life, then this will help one, as far as possible, to maintain "A Good Life With Dementia".

In case I am not moved to write another blog before Christmas, I would like to wish any readers, wherever you live, a Happy Christmas and New Year. To the followers in Russia, a Happy New Year and celebration of Christmas in January.

To all Carers and fellow Dementors, Peace and Love.
JSAFGA   

REPORT ON DEMENTIA CARE IN ACUTE HOSPITAL WARDS

Today, a report from the Royal College of Psychiatrists in the UK, expressed concern regarding the provision of care Dementia patients receive, in acute medical and surgical wards, when admitted for treatment of other clinical conditions. It states that, staff in these clinical areas do not currently provide an acceptable level of appropriate care for Dementia patients. A number of stated reasons for this include the lack of appropriate training.

To improve the above apparently deteriorating situation, I would suggest that all staff involved in clinical care, as part of their formal clinical training, should be required to demonstrate their personal ability in the following areas, before being granted their formal post-graduate clinical / medical professional qualification:-

a. A CARING NATURE

b. EMPATHETIC ABILITY

c. UNDERSTANDING OF THE SIGNIFICANCE OF RESPECT AND PERSONAL DIGNITY

c. HIGH LEVELS OF INTERPERSONAL COMMUNICATION SKILLS

d. A SENSE OF HUMOUR

The above list is not comprehensive. However, I believe that anyone who is going to be considered fit to provide clinical care for any person, whether being treated in the community or in hospital, should, as a minimum requirement, be required to demonstrate a high degree of personal skills and ability in the above areas, in addition to their clinical /medical knowledge. If adopted, this requirement, would not require any significant increase in financial cost to the education of potential health practitioners. However, the potential outcome in respect of improvement in the quality of patient care could be significant.

JSAFGA

 

KEEP IT SIMPLE

With Christmas fast approaching and the complexity of emotional strains, the happiness and sadness that we allow it to bring, my increasing view is Keep it Simple. In these times of financial austerity, this may be a blessing for many that they have no option but to keep it simple in respect of being able / unable to purchase gifts. There may, ultimately, be a long term advantageous spin off to this enforced necessity for many, to rein in the personal expenditure this year. Often the most simple gifts are the most cherished. The small uncomplicated gift from a child, often has the greater impact and meaning than some luxurious gift from a wealthy friend or family member.

Now, you may ask where is this blog going. Is it his personal soap box version of a church sermon? Well no, it is not meant to be that, even though it is being written on a Sunday evening! I am minded of the simplicity angle as I am, increasingly, finding that as the months pass I the complexity of issues and situations best avoided, in order to maintain clarity of thought and understanding. The adoption of a simple approach and the association with simplicity is not born from any high moralistic ideal, akin to a monastic existence. Rather it is driven by the wish to be able to function normally as possible, to try to avoid detection, by the newly met or the stranger, of being a card carrying member of the dementia club! Not that I am ashamed of membership, but rather, that I wish to keep as many aspects of life, relationships and thought processes, as simple as possible.

JSAFGA 

EMOTIONAL DIMENSIONS

Today, I am minded that our friend dementia, is the bearer of the gift of exaggerated emotion.

As we are now well and truly in the run up to Christmas and more than halfway through Advent, the season of emotional highs and lows advances at a rapid rate. The coming together of family and friends at different stages of the Christmas season, is one to be viewed with a mixture of emotional value including Bon Ami and greetings of exagerated depth. Of course this is balanced by genuine expressions of love, warmth and hospitality between givers and receivers. So, I ask myself what is my problem with it all? I say my problem, as I acknowledge that like so many issues that annoy or result in an adverse reaction from me these days, my reaction to others, cannot in general be blamed on them, but rather, how I now respond to them.

In a similar manner to the exaggerated emotional festive responses referred to above, I find the ability to assimilate and accept the in genuine aspects, far more difficult to tolerate, than previously. I succumb more readily now to taking the less understanding and benevolent approach to such individuals and situations.
Why is this, one may reasonably ask? I think it is associated with my now perceived necessity and therefore efforts, to minimise confusion, by increasingly needing to focus on what I consider to be reality. A more black and white approach to relationships, I now find more easy to deal with. This of course conflicts with the complexity of normal human personality and relationships. These of course require great flexibility and understanding of persons and situations, in order to maintain stability and the avoidance of misunderstandings.
However, this of itself is conflictual from my perspective, if confusion is to be reduced.

I am, today, further minded that dementia appears to lead to exaggeration of certain pre-existing psychological /emotional facets. Just as Christmas often leads to heightened emotional states, I am conscious that a number of my own personality traits are also being increased with intensity as time progresses. It is possible therefore, that dementia has a particular facet that not only diminishes things like memory, but also extends /exaggerates some pre-existing traits. For example, a person like myself with a generally outgoing personalty, on occasions, finds that, in certain situations, the gregarious nature pervades even more than it did of old. The extension of these boundaries, beyond their previous limits, can be problematical not only for myself, but more importantly for others in whose company I am present. So far, no lasting damage has been done, as far as I am aware! However, this is obviously an extra burden for my wife, my carer, to have to cope with, less about the recipient.

Another example of the above, where the exaggerated personality trait being increasingly heightened, in a similar manner, is that of straight talking, "calling a spade a spade and not a dustpan"! This increase has led to a diminuation of my diplomacy and tact. Now, what needs to be understood by the reader, is that this is not an intentional act and it is often only when someone expresses their concern or hurt, that one sometimes accepts or understands that one has overstepped an acceptable boundary line. Even though at the time it did not seem to be the case.

NB. In view of the above, is it any wonder that we are eventually admitted to specialised residential care?!! It takes an enormous amount of love, care, persistence, determination and understanding, on the part of our carer, to cope with the increasing complexity of the challenges we present.

My final thought for this blog is that, as Christmas approaches, we dementiates should look forward to enjoying as many aspects of the season as possible, firmly in the knowledge, that in spite of our varying degrees of eccentricity, there is an enormous amount of Love, Good Will and Understanding around us.

JSAFGA

A HELPFUL TECHNIQUE

I share with you a technique that I find helpful, particularly when having difficulty remembering someones name during a conversation. Not necessarily the name of the person to whom I am speaking, but usually the name of someone else to whom I wish to refer. This technique is probably more easily adopted in a small village community of about 100 people, like that where I live, rather than in a town. However, even there, it may have it's uses for communicating about a person who lives in the same road or vicinity.

What I do, in instances when I cannot recall the name of someone about whom I want to refer during a conversation, is I may refer to their trade. For example I will sometimes refer to the farmer who lives in  the farmhouse at the top of the lane on the bend. The person to whom I am speaking will invariably know who I mean and will refer to them by their name. This allows the conversation to continue, fairly, unimpeded. Once the individual with whom  I am conversing has understood that sometimes they will be required to provide reminder links of this nature, all is well for both parties. It comes as a bit of a shock for them on the first couple of occasions, but from then on, they are usually happy to oblige in this manner. The initial shock for the other party is when they know that you know the other individual well, to whom you are referring and whose name you cannot remember. They therefore wonder why you are communicating in this form of
descriptive manner. On the second occasion, I usually come clean and state that I sometimes have memory recall difficulties. This I find the simplest and most straightforward approach and the least stressful for all concerned. It is like anything else, once one knows the extent of a problem then one can easier deal with it.

JSAFGA

TAKE THE RISK - HAVE YOUR VOICE HEARD

On a good day and when necessary, I seek to take opportunities to take charge of events either at home or in the company of others, including suggestion of solutions to problematic situations. My wife has increasingly supported me in doing so, in the four years since I was diagnosed.

Now, of course, sometimes the above can be tricky. One has to try to be sure that you have totally understood the situation, before proffering one's guidance. However, for an increased degree of personal respect / credence, I believe it a risk worth taking. In these situations, I hope that I have not misunderstood what has been said or misread the situation. There again, don't non dementing people, frequently, do that? Of course they do!

So I say to my fellow dementing brothers and sisters, have courage, speak out when you think it appropriate, offer advice and a view, when you think it is warranted. You may get a worried look or bemused response from aquaintances who think they know you, but really don't. However, let them have their own moment of confusion to deal with, we have enough of our own! In that golden moment of clear thinking, be brave, seize the opportunity, make the statement, offer the advice, demonstrate your knowledge and understanding of the situation, whatever it might be. Take the opportunity to build up / repair any damaged self worth, or lost confidence. Let others see the positive aspect of your hidden depths, dispel for some the myth that, having dementia means that you do not, anymore, have the potential to provide a degree of leadership, insight and
understanding.

Take the risk!

A TRICKY WINDY PATH

Here we go again, an expression of thoughts and inner feelings / emotions that are around on a daily basis. Some more pronounced than others, on days in question, dependent upon the circumstances.

It is a tricky, winding path this journey is currently following. Moments of great fun, laughter and joy. Others of  bitter frustration and anger when misunderstood, ignored, or intentionally avoided and sidelined. Those one or two who avoid me, I think, mainly do so out of a feared concern regarding their lack of ability to cope with / handle my possible response to them. There is a wealth of misunderstanding, some no doubt on my part, which I suppose is understandable, in relation to the manner of social communication with the likes of myself, at this stage of the dementia journey. Fortunately my wife and carer understands my current need for simplicity and straight talking when dealing with others. Unfortunately not everyone else can.

The above may seem a bit of a self centred approach / rant. It is to a certain extent, yet this perceived need for simple straight forward communication is a NEED, to minimise confusion. Confusion leads to frustration and misuderstanding and the consequence of this sometimes leads to others being offended by my  reaction.

I hope that any fellow travellers on this journey, be they carers or fellow dementiates, who may read this blog, get some comfort from knowing that, if they are experiencing these irritations or the consequences of the same, they are not travelling alone!

JSAFGA 

FOG THE LEVELLER

This morning's early morning walk down the valley in thick fog, ironically, proved to be another opportunity for a degree of possible alternative enlightenment and reflection.

Firstly, ahead of me I noticed that Blossom, my Springer Spaniel, had lay down in a submissive manner on the ground. I then noticed in the mists, what appeared to be the outline of a large cow. In the normal way, Blossom would not react in this manner, at the sight of a cow. She is familiar with the local cattle, as are  they with her and their presence never upsets the other. However, as I got within 20 yards of the shape, I could make out the outline, not of a cow, but of two men and a couple of dogs, hence, my own dog staying laid down. The people concerned had waited, as they had obviously seen my figure looming out of the fog as I approached and they too were not sure as to whether or not I was an approaching beast. When we all came within distance of positive sighting and identification of each other, noting all was well, we exchanged greetings and carried on our respective travels.

The above event reminded me that, there are occasions when clarity of thought and speech are being joined by others in whose company I am present, while at the same time, I have become conscious that I am struggling with aspects of fogginess of thought and communication. However, this morning's fog provided what I considered was a "level playing field" for all concerned. The other two people present and their dogs, were just as unsure and unclear as myself and Blossom. They were evidently reassured when Blossom came with me up the other side of the valley. I sat for a while in the fog and felt a strange degree of satisfaction, that those two people had briefly experienced an aspect of the practical reality of the lack of internal clarity and the fogginess similar to which I regularly experience, even on sunny days. 

One cannot reasonably expect, empathy and understanding of one's confusion, memory loss and episodes of  frustrated verbal aggression. One certainly doesn't want sympathy, as that does NOT help at all. However, in the quiet safety of this blog, I am able to give external expression, which I find helpful, to some internal analysis of my onward journey through what is in general a "Good Life With Dementia".

JSAFGA

RESPECT

Today's fog and mists have not clouded the thought processes, I am pleased to say. Out walking, I pondered the different responses I get from various individuals in the community in which I live, when I communicate with them and they with me. I am aware that what I say, or my reactions to what others say to me, will automatically influence their response and their view of me, as is the normal human response in the communication process.

The most significant issue of all, in the often complicated situation of communication, as far as I am currently concerned, is that of "respect". Respect is the basic ingredient with which every human being, of what ever age or state, has the right to be treated. This is of course a two way process. One cannot expect to be respected or treated with respect, unless one accords the same to others. However, I do appreciate that this is not always as easy to do, as one would hope. This is the case, whether dealing with young or old whether one is well or has some form of illness.

Unless an individual knows you well or knows about your current state, whatever that might be, there is the likelihood that their respect for you may be jeopardised by your statements, actions, or reactions, to them and / or situations in which they are involved with you. These may be social, professional contacts, or as members of the public in the course of day to day contacts. These reactions may be viewed as understandable / reasonable. However, they do still pose difficulties in respect of their affect on the degree of trust that one has in others and they in you. This in turn may affect the future quality of relationship and communication between the persons concerned.

Dementia adds an additional aspect of potential risk to the breakdown of respect between dementi and others. It's associated behavioural and social issues, may understandably lead to false opinions / assumptions regarding the person concerned. They may be considered to be less desirable, than previously, in social gatherings and often induce a perceived, if not real, patronising response from others. One has to admit, that this response is not surprising and probably not unreasonable. However, it does pose a serious risk to one's confidence and self respect. This, in turn, risks a desire for the protection of  increased isolation. I suspect that this scenario applies just as much in the daycare or residential care settings, as it does for individuals still living in the community.

So, what is the solution to the issues I raise in this blog. Firstly, I do not think there is a "one fits all" solution. The situation is complex, as are the responses and interactions between all parties involved. However, on further reflection, it certainly could help, if people like myself, with dementia, made as great an effort as possible, while we are still able, to behave in such a way that the frequency of occurrence of these problems are minimised. In addition, it could also be helpful, if the general public, carers, both formal and informal, health care professionals and social care professionals, were better educated in aspects of this topic. This could then lead to a greater understanding of the benefits to all concerned of the importance and significance of "respect".   

JSAFGA

A SILENT FRIEND

The advantages and benefits of close friendships are numerous. However, I also greatly appreciate the benefit of having a loyal, trusted, yet, silent friend. One who listens, who is always there. One who usually responds to requests / directions, without explanation. One who always defends in times of potential danger, whether real or perceived. One who trusts you to have done and to do, whatever is required. One who does not need to check to see whether or not you have taken your tablets or whether you have left something on the cooker. One who does not have to worry whether something you say, in company, may offend. One who is not concerned if you stay out for an extra hour or so, when walking in the meadows. One who does not proffer unsolicited, although possibly well meaning, advice. The silent friend to whom I refer, of course, is Blossom, our Springer Spaniel.

Now, I appreciate that it is easy for a dog to provide uncomplicated companionship. As an animal, she has few needs to be met and is easily pleased. Yet she is a significant member our family unit. The many hours I spend each day out walking the hills, are enhanced significantly by the attendant company of Blossom. To watch her running in the meadows, as I walk, leaping walls, chasing rabbits and other wildlife, springing pheasant etc, provides an extraordinary amount of pleasure and mental stimuli. Whatever the weather conditions, the fun and joy of these daily walks are greatly appreciated and are to be savoured. It is hoped that at some far distant date, when they cannot be undertaken, the memories of the joy our "Silent Friend" brought, will never be forgotten.

JSAFGA  

UNFORSEEN BENEFITS OF SHUTTING DOWN

This foggy, late autumn day, has inspired today's blog. The meadows and surrounding hills have been shrouded in a thick blanket of fog all day. The walk with Blossom this morning had a different dimension to it, with cows and sheep appearing and disappearing in and out of the mists as we passed.

 Knowing what would normally be visible in the different areas, yet could not be seen today, it struck me that in a similar way, the memory and thought processes and even conversations, nowadays, sometimes take on aspects of vision, both internal and expressed externally, which may cloud what is really meant  to be said and what is sometimes lost, if only temporarily.

In a positive vein, the vagueness and sometimes foggy thought process can possibly be beneficial, if accepted as a benefit. This can happen, if one can overcome the often immediate associated response of
frustration, sufficiently, to stop and let the brain take the time out it is apparently asking for, rather than making it continue to frustratingly struggle. Once cerebral equilibrium has been established, new and totally unassociated thought processes can emerge that take one on a comletely different cerebral journey. The clouds of the mind slowly lift and reveal beautiful new horizons, some of which you had not previously seen, or viewed in this new way.

The above experience, is similar to the way that the fog and mists of today, shut out the normally beautiful views. Yet at the same time, it helped inspire thoughts about the opportunities and potential benefits of giving the brain, temporary shut down / recovery time, which can then facilitate the development of further new inspirations.

I should point out that the words "inspire" and "inspiration" are used advisedly. I am mindful that the personal illuminations described and their resulting expression, will possibly only serve to create a thick fog / mist and even blurred understanding / misunderstanding for those not sharing the dementing process.

JSAFGA

HELPING YOUR CARER NOT TO WORRY

I choose this blog title today, as it is topical to me and my wife's (my carer) current situation. She goes into hospital tomorrow morning for an exploratory procedure that is usually undertaken on a day case basis, although the hospital have warned her that, as she is undergoing a general anaesthetic, she may have to remain in overnight. However, in view of her being my carer, she has been put first on the list, so they are hopeful she will be sufficiently recovered to come home later in the day. A good friend, who we jokingly refer to as "the carer's carer", is taking her and bringing her home. She is also meant to be keeping a watchful eye over my well being, while my wife is away.

This situation has highlighted a few issues posed from my perspective, regarding the acceptance / acknowledgement of the need to have someone officially nominated as my carer and the fact that it is considered that when they are temporarily unavailable, that someone else has to deputise. I know that logically this should be the case. However, logic does not always concur with raw emotion. To have to acknowledge that this type of watching cover is necessary, is not that easy to deal with in reality. The only reason I am trying my hardest to outwardly accept the arrangements made, is purely for my wife's sake, so that she will not be worried about me while she is in hospital, even if only for 24hours.

Of course I know and will acknowledge, when being completely honest, the risk elements that exist and make the necessity for this type of caring cover to be provided - Leaving pans on the cooker unattended and forgotten about, forgetting to take medication, dealing, sometimes inappropriately, with other people and upsetting them, difficulties sometimes experienced in dealing with phone calls. These are, unfortunately, some of the issues that make the arrangements above, necessary. The most important one of all, trying to relieve the burden of additional worry that my wife would otherwise  incur.

One of the most baffling aspects of dementia to me is that I can happily write a blog of this nature and many other pieces of writing, without any problem, while at the same time experiencing the above issues!

Dealing with these issues / frustrations as calmly as possible is an essential requirement, to ensure that both patient and carer experience "A Good Life With Dementia"!

JSAFGA     

CARER TRUST

Today, I went to hospital with my wife (my Carer), as she was having a pre- operative appointment, in anticipation of her undergoing an investigative procedure, under general anaesthetic, on Thursday. I was delighted that she agreed to me accompanying her into the consultation. Understandably, at my suggestion, it was on the understanding that I say nothing when she was with the specialist nurse. My wife did however say to me that if there was something I thought important that she might have omitted to say, then I should do so. This was a tremendous demonstration of trust and faith on her part, that she was prepared to risk my being present. (I use the word "risk" advisably, as I acknowledge, there was an element of risk involved on her part) However, I am delighted to report that the consultation proceeded without a hitch and I was even able to assist, when asked by my wife to confirm some information that was required.

Now, one may ask why did the above mean so much to you? Well, it demonstrated to me that in a potentially risky situation, my wife was still able to place her trust in me that I would be able to behave as agreed.  The fact that I did so was a relief to her and to me! Unfortunately, these days, I cannot accurately predict what my response will be in different sets of circumstances and so this was a very special and morale boosting ocassion.  On Thursday, when my wife goes to the hospital for the, day case, procedure to be carried out, a friend of hers will be taking her and bringing her home. I will be at home walking the hills with Blossom, our Springer Spaniel, eagerly awaiting her return.

Coincidentally, on the early morning TV news programme today, there was a gentleman with Alzheimer's, who was in the studio with his carer wife. They were being interviewed live regarding how he had been diagnosed and how they managed the disease. It was good to see this gentleman describing, quite clearly, some aspects of issues involved re the circumstances surrounding events which eventually resulted in his diagnosis and the involvement / lack of involvement of health professionals. Anyway, seeing him gave me added encouragement and incentive to accompany my wife to the clinic today.

So I hope, that in the same way, these blogs may be not just a beneficial expressive release for myself, but possibly, also, a use full / helpful insight and encouragement for others on the dementia journey, their carers and maybe even health professionals with an interest in the subject.

JSAFGA   

TRYING TO AVOID THOSE WHO BRING THE WORST OUT IN YOU

One of the benefits of leading a more seclusive lifestyle, is minimising the opportunity for confrontational situations. There are of course issues that adopting this strategy presents. You may be viewed as isolationist by some in the community. You may also be viewed as a bit odd by some. However, maybe this is the lesser of two evils, namely, better that they view you this way, rather than they insist on making contact that is likely to result in confrontation and upset.

At this stage of the dementing process, while still living at home, the above avoidance is relatively easy for me to organise. In general, I have the freedom and ability to decide whether or not I come into with  individuals. However, for the dementing person in residential care or even attending day-care, it is not so easy for those persons to avoid contact with certain members of professional staff responsible for their care, who may have a similar affect on them. This is something that, unpalatable as it may be, caring professional staff, both medical and nursing, should consider.

It will not be easy for most doctors or nurses to be able accept that, in spite of their professional qualifications and experience, because of how they present themselves as individuals to the patient concerned, they will, in some instances, be more of a hinderance to the patient's well being, than help. I recall when my late father, an Alzheimer patient, was in the nursing home, shortly after admission, he used to react particularly badly in the presence of one senior nurse, namely the nursing home's Matron. She was just as caring as any other members of the nursing staff. However, possibly it was her accent and her voice, as opposed to what she said, that for whatever reason, he used to find disturbing. Fortunately, she quickly realised that this was the case. However, rather than letting any professional dignity or personal  pride stand in the way, she minimised her personal contact with my father, while at the same time keeping a very close watch on the provision of his care by the nursing staff responsible for his care. This was of course the correct action for her to take.

Increasingly, I experience situations where, for no apparent reason, I find it difficult to be able to put up with people, without reacting, sometimes inappropriately. However, I am able to try and avoid such situations, or people with whom I react badly. People who are receiving residential care, are not able to do so. An understanding and empathetic approach by the health professionals providing their care, is therefore essential. They should be made aware as part of their basic and ongoing professional education, that specifically with dementia patients, the scenario that something as simple as their accent, may possibly be the catalyst to unwittingly cause distress to their patient. When this is suspected, appropriate staff changes should be made.

A patient's well being must always take priority over a health professionals pride!

JSAFGA

ENJOY THE COMPANY OF THOSE WHOSE COMPANY YOU ENJOY

Yesterday we had a pre-arranged visit from a longstanding friend, who together with Lynne, his now deceased wife, had been friends of my wife and myself since our teenage years. Lynne had been a bridesmaid at our wedding 42 years ago. We arrange to meet up about three times a year. These meetings were always in the past joyous and fun filled days and now continue to be with Clive, even though Lynne is no longer with us.

I mention the above, as these visits have always been for me, what I can only describe as "safe". Now what do I mean by "safe"? Safe in so far as there is no feeling of anxiety prior or during our time together. I consider them to be times of complete acceptance of each individual present, treating each other as we always have done, with openness,honesty and loving care. This is not to say that when other people visit some of those elements will not also be present, to a greater or lesser degree. However, we have always been able to accept each other as we are at the time on the day in question - no judgements , no directions, just acceptance of how we are and where we are at on that particular day. This make the company of these people joyous, non judgemental and non stress inducing.

I find it is now best to have, what I consider, a small number of quality friends, rather than a large number of friends. This may be a bit of an isolationist approach, however, it is one with which I consider most fulfilling. This does not of course rule out the acquaintanceship of other people either in the community where one lives or elsewhere. However, the problem I find with interaction with this category of person, is that there is a far greater risk of upsetting them and misunderstandings arising - not necessarily their fault, sometimes mine, nevertheless, problematical all the same.

So, today, I am definitely of the opinion that, for me, and possibly for others, the safest and most productive way forward, is to enjoy the company of those, whose company I enjoy.

JSAFGA 

A SMALL TRIUMPH MEANS A LOT

The title of today's blog is born of an incident that occurred yesterday, when using some former skills I was able to resolve a problem.

We had been having a problem with our sky TV and the intermittent loss of our broadband Internet connection. This has been the case for a week and in spite of several calls by my wife and carrying out verbal instructions via the telephone, the problem was not being resolved. The fifth call yesterday morning to yet another different respondent, resulted in my having to speak to the person concerned. The full details of the telephone call  I am unable to recall. However, I am able to say that I managed to stay calm and adopted a communication technique, used on many occasions during my former professional life, which resulted in the individual concerned taking the necessary action that resulted in an engineer visiting our premises this morning and quickly repairing the faulty connections.

The small triumph referred to above therefore, was not only the satisfactory outcome in relation to getting the connection problems resolved, but on a personal level to have the satisfaction of having been able to satisfactorily use a former communication technique to good effect. A relatively small triumph of this nature, may not seem much to the reader. However, it has given me a psychological boost as it is refreshing to be able to enjoy what I consider a minor triumph, as opposed to the numerous minor, yet mainly untoward, incidents in which I have been involved.

It is always good to be able to have some positive aspects to focus on as opposed to negative.

JSAFGA 

PEOPLE WITH DEMENTIA ARE NORMAL

People who have dementia are not special. We are normal individuals whose brain is degenerating at a greater pace and in some cases earlier, than most other people. I make the point about normality, as I think too greater emphasis is often placed on the differences between people with the disease and those without it. It is far easier and for some, a great defence mechanism, to emphasise the differences, rather than acknowledge similarities with someone or something one doesn't fully understand or feel comfortable with.

It would be helpful, for all concerned, if greater emphasis was placed on the similarities between patients, carers and health professionals, rather than the differences. This is not to deny that the dementia sufferer presents for others a number of specific issues / difficulties. Similarly, dementing individuals also have to cope, in a different way, with aspects that these issues present for them. In many respects therefore, this is the same for everyone else. In society, everyone has to adapt and make allowance for others in their personal and professional lives. To progress, in situations, the most successful outcome is achieved when differences, although acknowledged, are not the focus, the emphasis being on the areas of shared interest and mutual benefit.

Not withstanding the above, my observations, are, possibly, prompted by the slight frustration of having to accept the difficulty, that one's response to certain situations, is not what one would "normally" have had a few years ago. In spite of this, the good aspects of each day usually far outweigh the less desirable.

JSAFGA

ADAPTABILITY HELPS

Events that occurred today have prompted this blog.

In recent days we have had a new batch of young cows come into the field at the back of the converted barn in which we (my wife and I) live. They are particularly inquisitive and have taken to not only peering in through the windows that overlook the field, but also to noisily licking the window frames and the glass. This has been particularly annoying for our Springer spaniel, who dislikes the look of the huge bovine head peering in at her. Events went a stage further today when as a result of the satelite television signal being lost we have been unable to watch any TV. On inspection of the wiring outside, I found a large section of cabling had been chewed by our friends( the cows)! We will now be without TV for a couple of days before the TV company can send some one to make a repair.

In view of the above, we have had to adapt to the new circumstances the cows have inflicted on us. My wife is still able to watch DVDs and I am enjoying listening to music Cd's. So a whole new way of entertainment has had to be found to temporarily replace the former.

The changed circumstances and the need for adaptability in the situation has strong links to the provision of a "Good Life With Dementia". The necessity for one and one's carer to be able to adapt readily to changing circumstances is of great benefit. However, strangely, I now find it increasingly more difficult to adapt to changing circumstances and arrangements. Certainty is now the main provider of solace and peace. The necessary adaptability that uuncertainty or changed plans required was something on which I used to thrive, both in my professional and personal life. Not so, today though, I am afraid. However, this temporary enforced loss of TV entertainment will be an interesting test in adaptability!

JSAFGA

A GOOD WEEK

This past week has once more been a good one. What constitutes a good week for me? As far as I am concerned it is when the positive aspects outnumber the less positive. This criteria is possibly applied by most people when assessing the type of week they have had. The possible variable is what each individual considers to be  "good".

A good week for me, is one where I have managed, as far as I aware, not unreasonably, caused any offence to anyone with what I have said. I say unreasonably, as there are times when I consider that something has to be said, or a point made, which can upset the recipient, even though this is not the intention. I find that, increasingly, this is becoming an unfortunate aspect of my life.

What is the alternative? Not be true to how you feel or perceive things? I do not think so! That would be totally alien to me both the person I am now and also the person I have been all my adult life. I find it increasingly difficult to be diplomatic, as opposed to being direct and truthful about how I feel. Anything less than an open and direct approach, presents the risk of confusion and increased frustration.

There were a couple of incidents this week, when, as far as I am concerned, what I said was reasonable in the circumstances. One of the recipients no doubt will not think so and the other will probably not care or be too concerned.

On balance, a good week has been enjoyed.

JSAFGA

KEEPING A POSITIVE OUTLOOK

There are many differing strategies people adopt in order to try and stay positive to help survive all sorts of situations life throws at them. Many people cope with situations on their own, or through the help of family, friends or health professionals. However, although they manage to cope, this does not necessarily mean to say that they consider they have a "Good Life". There are many people who, unfortunately for them, are not able to enjoy the benefits of a positive outlook when dealing with adversity. If anyone reads my blog who is in this category, I should point out that, although I am one of the lucky ones who has an innate positive attitude to life, I appreciate that many individuals who although they would possibly like to be able to adopt a positive attitude to adversity, find it extremely difficult, if not impossible.

An approach I find helpful in maintaining a positive attitude, is to avoid focusing on aspects of life that I am no longer able to undertake, or to take part in. Instead, I now focus on what I can do and look for opportunities to try and increase their variety and range. This does not always have to be something physical. It is often an inspirational thought process resulting from a quiet moment listening to a piece of classical music. The writing of a letter to a politician or sometimes royalty or other a world leader, expressing my thoughts on issues. To some this may seem a strange thing to do. However, my attitude is, if I find it helpful, I DO IT! 

Another aspect to retaining a positive attitude and enjoying a good life, in spite of the dementing process, is to be able to maintain a sense of humour. When possible have a laugh at yourself, particularly about issues that were not amusing at the time and which possibly involved a stressful situation for both yourself and for others, as a result of your action. The following incident last week caused a considerable degree of stress for myself  and both stress and embarrassment for my wife and a visitor to our home. However, now, a few days later, a description of the incident to visitors by both my wife and myself, enabled us to see the funny side of the incident and on my part, acceptance that, although there was a logical reason for my reaction at the time, on reflection, I acknowledge that had a similar occurrence happened a few years ago, I would have dealt with the situation in a far more diplomatic manner.

To be able to look back on incidents, as above, and to be able to see the funny side ( if not viewed as funny at the time) is another major contributory factor to helping keep a positive attitude.

JSAFGA 

CARING FOR YOUR CARER

While having my evening meal, I was mind full of the opportunities that are presented daily to provide my carer, in my case, my wife, reciprocol elements of care for her. Maybe it is the fact that I have always been less than useful in the cooking department that inspired such thoughts. This issue, (not the inability to cook) may also resonate with some fellow members of the "dementia club" and their carers.

No doubt, the majority of us greatly appreciate how our carer and others, support us on this weird and sometimes, wonderful or less wonderful journey. Even those in a more advanced stage of the illness, who unfortunately are no longer able to communicate with their carer, may well still be aware that they are being cared for, even though they may not necessarily always be able to indicate that they know who it is that is looking after them.  

I do not know, but maybe in cases where one's carer is a loved one, possibly it is more likely that one will be more inclined to seek opportunities to lighten their burden, than would otherwise be the case with a professional carer, be it at home or in a residential setting. Sometimes, I will do so without thinking. For example, undertaking simple tasks that my wife would otherwise have to undertake. This is of course easier to do some days than others, dependent on my state of mind and confidence to feel able to carry out the task successfully. In my case failure to deliver the goods, results in a considerable disappointment and resulting loss of confidence. Unfortunately, this impacts on the willingness to attempt the same task again, at a future date. There will sometimes be a willingness to try again, but then, when venturing further to carry it out, a sense of anxiety can pervade, resulting in an inability to undertake the task concerned.

An instance of the above that I experience, is the use of the telephone. For example to ring up to make an appointment, is an area where I now rarely get involved. The reason being, if the person concerned on the other end of the line needs more than a couple of items of information from me, then unfortunately, this, increasingly, has me floundering and I will have to call my wife to bail  me out. Therefore all the well intentioned thoughts of assisting her, by making the call in the first place, have not produced the desired result and have in fact only added to her burden.  So now, unless I am feeling supremely confident on the day concerned, I avoid making telephone calls. Having reached this point, I think it more productive for both myself and my wife, that I don't beat myself up about the issue, but move on to find other areas where I can be of real assistance. Fortunately, I am relatively well, physically, thanks to the aid of medication. I therefore seek out physical jobs to undertake that need doing and that will be of help. Some of these are simple daily routine items and others are less frequent, yet equally important.

In trying to achieve a good life with dementia, those of us who are able, can continually search for ways of assisting this process for both ourselves and our carers. However, should we attempt new ways, or re-try old ones and fail, try not to become too despondent, find something new to ACHIEVE.

JSAFGA      

TRUST IN OTHERS UNDERSTANDING

As one becomes gradually less patient and amiable in many situations, one has to increasingly rely on the good nature / understanding of those who know you and others you meet. It is not a right to expect them to be good natured or understanding in relation to what may be perceived by the recipient as an unreasonable or less than diplomatic remark or comment.

When remarks or comments are made, as referred to above, at the time the comment is made, I consider it reasonable in the circumstances. Unfortunately, this is apparently not always the case and it is in those circumstances, that one has had to trust in the understanding nature of the recipient. My poor wife has had to develop an inordinate increase in diplomatic skills in order to quickly heal any wounds inflicted on the unfortunate recipients.

The strange dichotomy dementia has provided me, has been the opening up of a greatly broadened view on many issues, some of which I would have previously had a much narrower / dogmatic view. On the other hand, I increasingly rely on quite detailed specific information / instructions on a number of daily issues, without which confusion reigns. The development of a freedom of the mind to explore all sorts of thoughts and methods of expression on the one hand, yet a reliance on virtual hand holding in respect of a number of matters / issues, previously undertaken for years without any requirement for support. It is not easily understood!

The above leads to the option of more seclusion and the safety of the limited number of persons I consider I can rely on to trust in their understanding.

JSAFGA      

"I WAS GOING TO MAKE YOU REMEMBER IT!"

A well meaning, yet, as far as I am concerned, misguided, in fact, though not her fault, totally unguided, yet well intentioned, new neighbour, who is a relatively now friend of my wife's, knocked at our door two days ago. Our dog Blossom, did her usual protective routine of barking a warning. This she usually does until I say;" it is alright it is only,(then I name the person) and let them in. Blossom then knows all is well and settles down. On this occasion, I couldn't remember the neighbour's name and called to her to remind me of her name. However, she did not respond and so I had to open the door and let her in anyway. When she had come, in I recalled her name. I told her that I was asking her to remind me of her name because I had forgotten it. To which she replied; "I know you had and I was going to make you remember it".  I let her know in no uncertain terms (only a few minor expletives) that doing that was of no help whatsoever and never to do it again. I further pointed out that if I asked for assistance to recall her name, I needed it, as didn't do it for the fun of it.

I have a feeling that having got to know this well intentioned, though as far as I am concerned unhelpful, individual,sufficiently well, that she will still consider she was being helpful and is likely to carry on regardless. If this is the case, then in a similar situation, the door will remain unopened with her on the other side!!

Now, as mentioned above, I am sure the lady's intentions were honourable and that she genuinely thought she was being of  help. In the situation I find myself in, with this condition, I am not prepared to be used by some well meaning, yet, to me, dangerous individual, as the object of their experimentation to try and cure my memory problems. I have detected from previous conversations and in getting to know, as well as observe, the individual concerned, that she is of the "I can fix anything" category of person. In order to avoid potential conflict when she visits our home, having exchanged pleasantries, I now take my leave and seek the refuge of my apartment / relaxation room.

As certain aspects of my mental condition slowly change, I am aware that I seem to be becoming more frequently involved in conflictual and stress inducing and creating situations with others. These are usually as a result of my response, (seemingly to me reasonable at the time)  to what others say or do.

Wishing to avoid the above and to minimise unsavoury incidents and resulting cause of hurt to others and myself, I spend an increasing amount of time out walking with Blossom our dog and limiting the amount of time spent in others company indoors. Interestingly, on reflection, I find it better to converse with individuals in the open air in the village, rather than in an enclosed environment, e.g. home, church, pub, etc. Thank God, from my perspective, I am at my most peaceful and relaxed when in the haven of our home, alone with my wife and Blossom, or when out walking alone or with Blossom.

JSAFGA   

APOLOGISING FOR PAIN CAUSED

Recent experienced the pain of the realisation of the depth of pain and insult that one has, potentially, caused when unreasonably giving a short, yet unnecessaryy verbally abusive outburst. I delivered an unsolicited,humble, apology at the first opportunity the following day. It was only then on reflection that it dawned on me that what I had said was totally unreasonable. The problem is that at the time of these occurrences, one reacts instantaneously and without considered thought. This unfortunately is an increasing happening and at the time seems a reasonable knee jerk reaction. It is only on reflection that one is mortified by what one has said. Fortunately, the victim of the unreasonable tirade accepted the apology instantaneously and gave the gracious /  consoling response of "that's fine, forget about it". Of course one knows, on reflection, that what one had said was most unreasonable.

The above has been an increasing phenomenon, particularly with my ever loving carer, my wife. Fortunately we are so close and she is so understanding, that I am almost instantly aware of  the inappropriateness of what I have said and readily apologise very quickly.

Apologies, although releasing, also have a pain full aspect, namely the realisation of the inappropriateness, unreasonableness and hurt caused by what has been said. The reflection on the situation is a constant reminder of the creeping and ever developing affects that Dementia brings.

The result of the above incidents is to make one less inclined to wish to socialise and become more isolationist, for fear of the hurt and chaos that inappropriate responses / outbursts cause. This is a tricky phase of this disorder. I say disorder rather than disease, as the state that it brings is one of increasing disorder for the owner of the condition and possibly even more so for the carer and friends.

This blog is entitled "A Good Life with Dementia" and yes in spite of the condition / disorder, life in general is Good. However, I cannot forget that while 90% of the time this is the case, the occasions of unreasonableness do not provide a good life for my wife, family, friends and even casual acquaintances. Those who are aware of the proximity of the condition are on their guard and to them certain behaviour / verbals do not come as a surprise and they appear to cope with them.

People are very kind and understanding. My wife and carer is an Angel.

JSAFGA

DONT FIGHT THE JOY OF PEACE

It occured to me today, when out over the meadows with Bloss my Springer Spaniel, in the warm autumn sunshine, that the peace resulting from letting the mind go it's own way, in total peace and relaxation, should not be resisted. This regular feeling of  peace, is something I have increasingly experienced in the past couple of years, as dementia has progressed. Whether it because the increasing feeling of nothing much matters, or, possibly, that one's priorities have altered and become more relaxed and less complicated / complex. It is also probably assisted by the fact that my wife, of necessity, has had to take over the ultimate responsibility for affairs that, previously, would have been mine.

Keeping things simple and straightforward, while proving to be increasingly necessary to assist my understanding, is, I believe, having the knock on, yet beneficial, affect of removing the dross that might previously have made the contemplation of things, more complex than necessary. The mind currently thrives on the simple and straight forward, and yet at the same time, is opened up to many moments of quiet contemplation that result in, what appear to be, straight forward and simple insights into a variety of issues. This, in turn, provides a considerable degree of inner peace. I am of a mindset that why should one fight the joy of the peace that a simple and straightforward, yet insightful, approach to the contemplation of issues brings. In other words, keep it simple.

This season of autumn ties in quite nicely as to where I am in the normal life span and possibly in relation to my intellect. It has been an earlier intellectual autumn than I was anticipating, with the dwindling and reducing mental resources in relation to memory, understanding. However, these reduced faculties have, I believe, been  compensated by the development of new creative, insightful, peaceful, contemplative, abilities, that, as far as I am aware, have developed.

To those fellow sharers in the world of dementia, might I respectfully suggest you try not to fight the joy of the peace you may, at times, experience. Yes, you cant do what you did. Yes, you cant be the way you were before. Yes, you have your moments of frustration and annoyance at your state. Yes, you have feelings of sorrow and helplessness. Yes, you are annoyed and frustrated that you have to be reliant on your loving carer. Yes, you may fear the potential results of the strain on your carer, that carrying out their support of you may bring. However, examine the potential benefits for yourself and your carer that periods of mind clearing peace will have. Then seek opportunities to facilitate it - Good Luck and Happy Hunting - IT WILL BE Worth IT!

JSAFGA

INTERTWINING THE PAST WITH THE PRESENT

Where we are today has been intertwined with our past influences, be it by people, places and a miriad of life experiences. It is therefore now great to be able to let them all come together in a gentle mix. This for me, is helping create many joyful periods and times, when alone in various places and settings, I draw on the past and blend it into today and this greatly enhances the experience and views of the past and present.

The above experience, is not to deny the times of past unhappiness or trauma, but rather, not to feel the need to have them as a focus. Not to let them be a distraction from the beauty of each present day and the opportunities it presents to appreciate the overwhelming good memories of times past, both many years ago and also recent. The absent mindeness and occassional difficulties in verbal communications, maybe, lead to enhanced focus on the positive aspect of the many things I can do, rather than longing for the enhancement of past abilities.

Much appreciation and pleasure is gained from regularly visiting areas of the town where I was born and revisiting areas in the town centre. Although it has changed considerably from how it was in the 1950/60s, nevertheless there are some significant features that are unchanged and that have been splendidly blended in with the relatively modern buildings. It provides an excellent, gentle, eclectic mix of the past and the present, the yesteryear and the now. I find a regular couple of hours amble alone through the streets of the town centre, to be a most calming and rewarding experience. Seeing the people of today and at the same time enjoying thoughts of people I knew and well known characters of the town from times gone by, is a most enjoyable experience.

So the  D is seeming not only to be slowing aspects down, but more importantly, providing  enhancment of other mental facets.  

PATIENT INVOLVEMENT IN EDUCATING HEALTH PROFESSIONALS

Today's blog has been prompted by a feature I read this week in a local newspaper, regarding the advances in Dementia care at a specialist unit.

The above feature stated; "Staff even leave dusters lying around the wards so that patients can assert their independence and feel useful by polishing the furniture." If and when I have to go into one of these units, I hope that supportive developments in the field of specialist pschotherapeutic support for Dementia patients will have moved on considerably, from the stated practice of  leaving dusters lying around for me to do a bit of dusting! I see this as a degrading and from my perspective can be described as lazy and unimaginative provision of care.

Apparently, the specialist caring innovations include: "Other ways to sooth patients include giving them pieces of cloth covered in buttons, zips and a variety of textured fabrics with which they can fiddle." I can think of nothing more agitating, than being presented with a load of buttons on a cloth, together with zips to attempt to undo. Having witnessed my late father, who had Alzheimer's, anxiously struggling with his key case and knowing that with it's removal, he became less anxious, I am extremely concerned if the above kind of  "specialist care" awaits me.

Interestingly / disturbingly, no reference was made to the difference in the provision of services for those in the relatively early stages of the disease's development and people who are suffering it's advanced stage.

I am in two minds as to whether to contact the nurse in charge of the unit to offer her a relatively early stage dementia, patient's insight / observations. One reason I hesitate to offer my observations, is that, it is possible, should my observations be seen as threatening and unwelcome, my reaction ccould be unproductive. One of the byproducts of the condition, that I have been increasingly aware of this past year, is that, increasingly, I can no longer confidently predict my response to people and situations.

As I write, I am now increasingly of the opinion, that it might be safer, for all concerned, if I were to forward my observations in writing to the unit.

Another frightening omission from the newspaper feature, was the total lack of reference of the necessity to maintain a patient's dignity and self respect. For people to be treated with dignity and to be able to maintain their self respect, I believe, is essential in any health care setting.

Rather than dusting, patients should be offered the opportunity to commence blogging!

JSAFGA

HUMOUR CAN BE A MASSIVE SUPPORT

Humour can be an incredible support for people in general and likewise with dementia.

Yes, you do run a risk that people will be laughing at you, rather than with you and that this can be a more of a behind the hand snigger rather than laughter of an appreciative nature at the real humour in situations. However, I believe this is a risk worth taking and whatever others views, may or may not be, dont let this aprehension stultify the growth and increased happiness / sustinence, that humour and laughter can bring.
So what if some really dont find the comment or situation amusing? - that is their right. However, it is also your right to maximise the enjoyment of the humour, provided it is not at another's expense.

I am moved to write this blog, following an incident that occured earlier today, as detailed below:-

My wife was out visiting a neighbour when the phone rang. This is of significance as she will normally answer the phone if she is at home, mainly because I often have difficulty communicating fluently on the phone for any length of time and find it a strain.

On saying hello, the caller asked is it was Mr A, too which I replied "yes". He asked the same question again and at this point I thought I recognised the voice as that of a good friend from Wales. At this point, thinking it was my friend, I therefore replied in an oriental accent that it was the local village Chinese Laundry and that all white items of laundry should be kept seperately from coloured items. I then asked the caller did he want to place an order and if he didnt to stop wasting my time and get off the line. At this point, there was a deafening silence, so I then asked in my normal voice if it was my friend Geoff. At this point the person on the other end of the line said;" Mr A, it is Dr H your GP here". When I confirmed to him that it was and that I had thought it was a friend ringing, he said "thank goodness for that, I thought you had gone really bonkers".

Ironically, my GP had rung to let me know that, following my request during a recent consultation with him that he enquire about the possibility of attending counselling sessions, if I considered that they might be helpful at some time, he was reporting progress. This had therefore been the purpose of the phone call from him to confirm that the local mental health team would be available if and when I wished to be referred for a counselling session. We were then both able to enjoy the joke re the identity mix up. However, I think he may now be relieved that he has made contact with the mental health team regarding myself!!

Interestingly, for my own protection, although I am anonymously prepared to share this event via this blog, I would not risk anyone, other than family, being made aware of the above event, as  it would be likely, in my opinion, to further colour their perception of my mental state.
 
JSAFGA
      

TODAY'S OPPORTUNITIES V THE REDUCTION IN YESTERDAY'S ABILITIES

One way to deal with reduced abilities is, rather than focusing on their loss, to find ways of creating new skills. This may or may not require new physical or mental agility or both. Where possible, try and counteract each loss, by creating a gain.
One aspect of the slowly increasing dementing state, of which I am conscious and have also been made aware by others, is that of increased insensitivity in relation to others, which on occasions, understandably causes offence / upset. At the time of the incidents, the issue of others sensitivities is not considered a priority. A point has to be made or matter clarified, at that time. Sometimes, it is only on reflection and /or it being discussed calmly, at a later time, that recognition / acceptance of the inappropriateness of one's behaviour, occurs. What is the relevance of this in relation to the observation in the above paragraph? This is given below:-

The loosening up of one's sensitivity / verbal inhibitions, while disturbing to others, can sometimes be channeled positively. I have tried to do so recently through writing a couple of short children's stories. Though not great literary pieces, they have proved to be a method of using the simplest of subjects, i.e.wildlife, to develop / maintain the creative side of my personality, that in the past was channelled into my professional working life. These stories have facilitated the ideal combination of the factual and the fanciful. This combination of aspects currently dominates my thought processes and to a greater or lesser degree must be influencing my behaviour towards and response to others. I lay great emphasis on individuals "keeping it real" talking straight and not  wrapping things up in fanciful unreal language. The reason I require this to be so, is to enable me to, readily understand what is being said, as I now find it increasingly difficult to concentrate on trying to establish and listen to the "music behind the words".

The loss of the ability to focus and fully absorb what is being said, is now being superseded by the attempt to counteract it through the development, however feebly, by this occasional writing of short stories for young children.

JSAFGA   

VALUABLE v VIABLE

Comments increasingly heard, among non medical, as well as medical persons, in relation to other human beings, both born and unborn, is whether or not these individuals are considered viable.

What one considers viable may depend on the value one attaches to the person concerned. Viability and value may be very closely linked, dependent upon the circumstances that necessitate or lead to the viewpoint  being expressed, or the subject being considered. These considerations are undoubtedly going to tax the minds of our politicians and other decision makers in decades to come, particularly, as a result of the projected ageing population in the UK. We will all have to fight our own corner, as long as we are capable of doing so, either individually, or collectively, or probably a combination of both.

Will we be considered a drain on the community's resources, when we can no longer provide what is considered a valuable input into society? Will our viability be questioned by the decision makers of the day? Will the value of the input we made into society during our lives, when we were considered to be vital and valuable, as well as viable, be considered when our future is questioned / considered?

As we lie in the nursing home or hospital bed, hopefully, there will be someone around who will be in a position to point out to the young fit decision makers, that the person they see lying, silently, there is the same person others remember for his/her contribution to society, no matter how great or small it was. He /she is still a member of the human race. God considered him/her a valuable creation, whether born or unborn.

The above is possibly for the future. What about today? The object will be to ensure that, while one can, one maximises one's ability to provide a valuable role for one's family and leave concerns regarding the judgement of one's value, to God, who I believe is not interested in one's potential viability!

JSAFGA

A TRUSTED, PROFESSIONAL EAR CAN ASSIST

Having experienced the development of a, less than tranquil transitional period, during the past few weeks, I  considered it necessary to arrange an extended appointment, for a one to one discussion, with my GP the other day. It was the first appointment I have arranged with him, specifically, to discuss the dementing state, outside of my annual, general health, review.

It was a satisfactory consultation from my point of view. He did all the listening! It provided an important opportunity to update the GP on developments, from my perspective. Arrangements for professional counselling sessions, should I consider it appropriate at anytime, are now being undertaken. This backup facility, I have been considering requesting for sometime. Knowing that it will be available, should I wish to avail of it, is a great help. 

There has been an increasing sense of an erosion of independence and reduction in one's ability to be in charge of one's destiny. Some of this has been real and some has, possibly, been more perception than reality. Being independent and even more importantly, in charge of one's destiny, is extremely important. I wish the same to apply, as far as is practically possible, at all the remaining developmental stages of my life. This is possible even within the confines of a residential care facility. Although not always the case, in these establishments, the emphasis should be on ascertaining and as far as possible, meeting, the needs of the cared for, as opposed to the needs / convenience of the organisation.

A sense of being misunderstood and misunderstanding others, is a complicated business, with which one has to deal. It is a challenging and complex business, under normal circumstances, yet even more complex now, at a time when keeping things uncomplicated and clear are essential to maximising function ability. In order to avoid the dangers of complexity, it is necessary to seek out individuals who have the ability and adaptability to "talk straight" and who I can know of you that you will "say what you mean and mean what you say". This is far more important now, than it was a couple of years ago. There is a risk, of which there have been a couple, of unfortunate incidents, where I have considered it necessary to tell individuals to do so. In social situations, this understandly, from their "normal" perspective, is considered "ungracious". Yes, that may be the case. However, I no longer, always receive or perceive things that people say and do, in the same way as I may have in the past. This applies to family, friends and strangers and therefore it is not that one group is singled out for special treatment, be it good or bad!

HOW TO DEAL WITH THIS IN A POSITIVE, PROBLEM SOLVING, MANNER?

a. Avoid, as far as practically possible, people (the number seems to increase) who you know seem to present such difficulties.

b. Find one or two individuals (they may be small in number) who you know do not present these problems.

c. Try and develop strategies for dealing with such situations, without causing offence.

d. Try and remind yourself that there was a time in the past when these individuals would not have seemed to present such difficulties for you. It is not that they who have changed - Accept, it is you that has changed! Nevertheless, don't beat yourself up about it. If the battery is losing it's power, you cant expect the light to shine so brightly!

JSAFGA
          

THREATS - PERCEIVED OR OTHERWISE

Seems like have sailed into choppy waters this weekend, as when sailing in an area of wind against tide. Know the conditions will change, either the wind will shift direction and even if it doesn't, the tide will, eventually, turn.

Today, being a Sunday, maybe is a good day to consider the issue of Threats - Perceived or Otherwise.

What threats am I talking about? Well these come in many shapes and sizes and it is now becoming more difficult to differentiate between those that are perceived and those that are actual. There is a danger in getting them mixed up, as they are so significantly different in outcome, yet they can seem equally ominous, until unravelled. The difficulty is unravelling them!

What are the areas concerned?

a. Credibility  b. Integrity  c. Reduced ability to understand / assimilate d. Others' perceptions of oneself 
e. Isolation

However, in the darkness of the moment, has come a ray of light from one of the village community, who, I consider to be a lighthouse / safe haven, the only one, apart from my wife, that is. A simple request for me to help him and his family in a small, yet meaningful manner. It is a major boost to one's confidence, self esteem (not to be confused with ego), at such times, when one is acknowledged as being someone who can be of assistance. This is even more uplifting, when you know that they are aware of your having dementia.

One cannot expect people to understand the complexities of the situation, when they are not experiencing it and when one does not fully understand it oneself.

In spite of the few current issues referred to above, LIFE IS GOOD!

JSAFGA  

TIME LOST - TIME GAINED

I have just noted that these blogs commenced on the 4th July - Independence Day.

I am amazed that it is therefore only approximately six weeks since this journey commenced. If it had been indicated that my first offering had been made three or four months ago, that would have seemed reasonable - but six weeks, I find truly amazing. Is this of significance? Well yes to me it is, I am not sure why. A period of time that should be is not. A period of time that apparently has been, doesn't seem to be correct. This has just created a degree of uncertainty for me, that I am currently NOW working through. There is a cloudy confusion at this moment that I am sharing and one that I know will lift at some stage, maybe in seconds, minutes, or hours, I do not know. How do I cope with this, what to do - keep calm enjoy the classical music that is playing, ironically entitled "Classical Chillout". I don't feel chilled out, there is an anxiety re confused time awareness. Sorry this has happened while blogging, but always have to go with the flow in trust that all will be well. The Beatles song "We Can Work It Out" springs to mind. As I carry on writing the significance of what it was that presented this issue is subsiding and although I recall it was about time lost and gained, I am managing to let it dissipate and a tranquility / normality is returning.

The theme of Independence is one I will now focus on, possibly briefly, who knows!!
The significance of independence is, I consider major. To be able to be as independent as possible, is an aim I focus on each day, being constantly reminded by my actions and reactions to people / situations, that like the memory etc, it has started, to ever so slowly ebb away. I will fight and am being lovingly supported by my wife, to retain as much independence as I can, for as long as I can. There are increasingly, more areas of life where I have to, unhappily, admit to not being able to cope with as independently as had always been the case in the past. I know what they are and don't intend to list them!! Why should I?

There are now different daily responsibilities that I hold on to and cherish, relatively minor as they may be compared to the responsibilities and drivers of my former professional life. However, in this life of NOW, they are, as I like to think and as my wife tells me, a significant contribution to our life. They are my daily drivers in to trying to maximise the use of the slowly dying wind that used to billow my sails and enable me to enjoy making the most of sailing close to the wind, both metaphorically and literally, in connection with work and when relaxing sailing.

Independence, self respect and dignity are very closely interlinked. They are interdependent to a large extent and the diminution of one has an automatic knock on effect on the others. Start to lose independence and self respect diminishes. If one's dignity is threatened, whether perceived or actual, then self respect is also at risk.
However, independence is retained at a price. One has to be constantly as focused as possible, so that one does not undertake or fails to remember to undertake, what is reasonably expected of one. This is a concern, when one knows from experience, that certain aspects of failed memory, or mildly unreasonable behaviour, demonstrated in either speech or acts, understandably, undermine the faith others can place in and the degree of independent latitude that should be afforded to you.

IS THIS A COMPLEX STATE ? YES

ARE WE PROBLEM SOLVERS? YES!

WILL WE MAXIMISE THE USE OF OUR RESOURCES TO DEAL WITH THESE ISSUES? YES!

JSAFGA 

NO, ONE FITS ALL SOLOUTION, IN DEMENTIA

I do not prepare these blogs in advance and only give thought to what the content will be as the "New Post" sign comes up on the screen. This "go with the flow" approach, I find more inspirational and less mental blocking / stultifying than struggling with a planned /detailed offering. That form of approach now, I find can be quite frustrating, as the reduced concentration span in planned, formalised writing now, is stress inducing and stultifying and therefore not productive.  Having spent my former professional life in necessary detailed planning as an essential feature, this alternative approach is proving to be the most satisfactory. However, although this approach suits me, it would obviously not be the case for others.

As the title of this blog indicates, each individual has to find their own best way of approaching issues. However, it is also the case that although one particular approach to situations may prove to be satisfactory one day, the same will not be the case on another day. One then has to try and adapt accordingly. In other words, flexibility has to be the name of the game.

Now, the above necessity for flexibility is all well and good for the dementiate. However, this does present difficulties for the carer. As there is no guaranteed, fixed pattern of behaviour or approach to issues, my wife has to be equally flexible in her response. A carer's lot is not always a happy one!

A frustration, I find, sometimes, is being aware that I am not always able to be consistent in many ways, yet am unable to revert to type at that time. A high degree of self awareness, can be both a blessing and a curse at these times.

So, in summary, there is not a "one fits all solution" to many similar issues, even though the circumstances may seem to be the same. Unfortunately, one's response to situations cannot be reliably predicted.       

JSAFGA

LINKING THE PAST WITH TODAY

A couple of weeks ago, I joined a mass protest of 10,000 citizens in support of saving the Railway Company that is a major industrial employer in the area and is under threat of closure, with the loss of thousands of jobs.

The above event rekindled a multiplicity memories of times in the 1970s, when  I was employed for three years at the company concerned. At that time in the UK, a million people were unemployed, inflation was rampant and  many more jobs were under threat throughout the country. Rolls Royce the world famous aero engine and motor car manufacturing, also based in the town, was about to go into receivership. It was only through mass protests and local cross party political pressure and support, that the government of the day finally reversed it's decision to let the company collapse and nationalised it. After not many years Rolls Royce was once more returned to private ownership and ultimately went on to become the world leading company it is today.

At the recent protest march, on seeing the banner of the trades union I belonged to 40 years ago, I was immediately drawn to walk in solidarity behind it, as in days of yore. I experienced a feeling of solidarity and comradeship, not only with those whose jobs are under threat today, but also in solidarity with the memory of former colleagues, many of whom are no longer alive, or too aged to attend, but who, had they been able, would have turned out to support the industrial family of Railway Employees in Derby.

The whole experience was a very moving and inspirational occasion, rekindling the comradeship and togetherness that a cause of such significance to so many peoples lives in the city engenders. It was as though the industrial relations battles of the 1970s, the government's mismanagement and resulting social injustices of the time, were once more having to be addressed, some 40 years later.

The above is a personal personal insight, NOT a political statement.

The day rekindled the flame of passion for a cause and the joy of solidarity.

I have increasingly found that the linking of the past with the present, whenever possible, helps to make better sense of each. This I do best, when out walking over the hills with Blossom, my dog or when writing.

WE DO NOT HAVE TO RELY ON MEMORY TO ENJOY TODAY

Forget what you went in to the pantry for? Oh yes frequently! Did you eventually remember what you were going there for? Oh yes after a while. How do you eventually remember what you were going there for? I retrace my steps to where I first started and then rather than struggling to remember, say a couple of unrepeatable expletives to myself, although all this does is release a bit of tension. Waiting there for a few quiet moments thinking of something else entirely, invariably frees up the mental block and I remember the reason for going to the pantry. The secret then, is to set off post haste and get there before you forget again why you are there!!
Is the above frustrating? Yes and upsetting, on the first few occasions. Can it be embarrassing? Yes, particularly if it is in connection with getting something for a visitor who does not know about your condition. Can you overcome the frustration and upset? Yes after a few occasions, if one conditions oneself to see it as a small rather than another big obstacle to undertaking daily routines. The challenge is to not let such events disturb one's equilibrium or knock one off course. Always remember, (no pun intended) that sooner or later you will invariably recall the forgotten thought.

Now, one can, rightly, argue that it is all well and good saying "chill you will eventually remember what it is you are looking after" etc. However, in many circumstances, these lapses of memory are extremely inconvenient and may have potentially serious implications / repercussions. Yes this is true, like the time when, for no apparent reason, I put a pan of water on the stove and went off to church, having left it on the stove. Fortunately, on nearing the church,(maybe Divine intervention!) I realised I had left my spectacles at home, so I went back for them. On entering the kitchen, I saw the pan of water bubbling away with just a small amount of water left in it!! While turning it off, I could recall lighting it, but to this day, I still don't know why I put it on in the first place!!

Apart from the extreme type of memory lapse, referred to above, I now find that many of the lapses I experience, can be best managed in as calm and philosophical manner as possible. I am now at the stage, maybe dangerously so, of  viewing such occasions as an opportunity to "move on", thinking of something else, not to dwell on the wrong note played by one instrument, but rather listening to the orchestra complete the piece. This "moving on" I find helps prevent getting bogged down by the stultifying frustrations
of dwelling on what one has missed. Rather, I try and look for the next opportunity for the brain to focus on assisting with something positive / creative. This can be a reflection on happy memories of times past, the appreciation of the beauty of the present moment, or the anticipation that, for every major / minor slip up, there is still always another opportunity to broaden one's horizon.

WE DO NOT HAVE TO RELY ON MEMORY TO ENJOY TODAY!

JSAFGA.

MAKING THE MOST OF THE NOW

The uncertainty of a long-term progressive condition, of indeterminable length and an unquantifiable speed of progression, presents one with the necessity to consider various options on how to deal with the situation. In my case, I was fortunate that dementia was diagnosed, as far as I can recall, only a few weeks before my wife and I were due to leave Wales, to move to our current home in the Peak District in England. We had, only a few months prior, decided to move away from the area, where we had spent nearly 30 years of our professional working lives. Now we were going back to our roots, nearer to the area we had left in 1977.

We had agreed that, under the circumstances, we would sooner make the enforced fresh start of early retirement in the countryside, in a village where we were not known to anyone. This move has proved to have been most beneficial for a  number of reasons. These include the initial anonimity, which avoided the stress associated with necessarily coming into contact with former colleagues and other persons from our respective professional and social circle and endless explanations as to the why and wherefore that our lives had changed so dramatically plus the well meant, yet unhelpful, comiserations.

We have been able, during this past four years, to settle in as members of a small village community, without the stresses and expectations of us, associated with life in Wales. We managed to do this initially by not informing anyone we were leaving and then only informing three or four close friends on the morning we departed. We new that from here on in we had to put ourselves first and that any upset that others might have, at not being informed we were moving or where we were going to, would have to be for them to deal with, as we had our own issues with which to cope!!

This was the start of the Making the Most of the Now. We now had to focus on dealing with this new phase in our life and having only recently received this latest item of medical luggage, we couldn't and were not prepared, to fit items of anyone else's in our Life's suitcase at that time. There are one or two individuals who still consider it was unreasonable that we did not say goodbye. However, I view that as their problem and hopefully, one day, they may resolve it, for themselves!!

When living on the coast in Wales, among the hobbies I particularly enjoyed were, sailing and fishing. Both these activities were governed by the changing tides. In analogous terms, I associate my dementia with the tide. High water was the day prior to diagnosis and fortunately, as far as my mental capacity at that time was concerned, it was a Spring tide, i.e. the highest of the year. It has, during the past few years, turned and is slowly retreating.

Often, when fishing from the shore, the largest fish are caught just as the tide turns and starts to go out. I am making the most of this exciting time, undertaking mental fishing, mainly through writing and meditation, and exercise, while out walking with Blossom over the meadows. I thank God that I have been given the opportunity to be able to undertake these pursuits, that are enabling me to "MAKE THE MOST OF THE NOW".

I am, as with other dementiates, only able to be "MAKING THE MOST OF THE NOW", because I have a loving, supportive, caring, wife on whom to rely.

JSAFGA