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
Thursday, 20 October 2011
Tuesday, 18 October 2011
"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
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
Friday, 7 October 2011
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
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
Tuesday, 27 September 2011
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
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
Saturday, 10 September 2011
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.
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.
Friday, 9 September 2011
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
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
Thursday, 1 September 2011
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
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
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