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
Sunday, 30 October 2011
Saturday, 29 October 2011
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
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
Tuesday, 25 October 2011
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
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
Friday, 21 October 2011
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
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
Thursday, 20 October 2011
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
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
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
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