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