It took a long while to get a diagnosis for my spouse but after he had a stroke at Christmas his dementia was a lot worse and I have a diagnosis of Alzheimer's and Vascular Dementia. It is very hard going some days with the constant repetitive questions and the inability to retain anything new. He finds it impossible to do jigsaws or to read books as he used to do. I did try a diary to help him keep track of what day it is but he doesn't like it, preferring to ask me. I find that it is better not to mention upcoming appointments or visits as he only worries about them. He gets anxious and needs constant reassurance. When he asks me over and over about things I find it hard to answer nicely and he picks up straight away that I am stressed. He needs me to be happy and asks me if I am happy and tells me he loves me and wants to please me. It is so hard to keep cheerful when you are under the pressure of the constant asking of the same questions. Somewhere on the alzheimers site there is some useful advice which I remind myself of - don't reason, argue or confront and don't remind them they forget nor question recent memory. Go with the flow. You can't control memory loss only your reaction to it . It's not always easy to follow these guidelines but when I do, we have a much better day. So I keep my chin(s) up and take one day at a time.
Keeping my chin up
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Therein lies the secret. Day to day. And an awareness that one's own 'logical' feelings or behaviour are anathema to dementia. And yes, body language or tone of voice, or any sense of 'stress' is picked up by the Alzheimer's mind, like a hawk. ' Repetition' can be exhausting, but once you come to terms with it as a 'norm', then it becomes part and parcel of the daily regime. As carers WE are the ones who have to adapt and in so doing adapt our thinking also, so as not to approach whatever befalls us with a precognition. Not to think in 'compos mentis' world, but 'dementia' world. Thereby we reduce angst, expectation and constant disillusionment.
The elderly gentleman says "I've been in town, played darts at the local and need to catch my bus home". "Very well, XX. I'll check out the times and let you know when the next bus arrives. Meanwhile how about a cup of tea?" The elderly gentleman is seated in the Care Home lounge and has been there all morning since getting out of bed. In entering 'his world' and accomodating his havng 'been in town' and needing to catch a bus, there is no actual conflict, but a continuity of 'his world'. This is slightly simplistic owing to the variants in any situation which arises and the individual concerned. But the principle is sound. The chin can be thus held up more confidently, accepting that none of this is at all easy - but neither is it hopeless.
Is this the link you're thinking of?
https://forum.alzheimers.org.uk/threads/compassionate-communication-with-the-memory-impaired.30801/
This could be a description of my spouse too and I have wrestled with these problems for several months now. I too try to be patient and use the compassionate communication guidelines but not always successfully. I do get frustrated and irritated but try to vent my feelings on the TP forums, again not always successfully because I get cross with him sometimes. I have posted my experiences on my threads as well as on other threads if relevant. I do try to carry on with normal activities as far as is possible within his abilities. He gets very tired and wants to be on his bed quite a lot between activities so I try to balance the two. I have had so much support from others on this website with hints and tips to cope with various situations. Do keep reading and posting and I would echo the advice to go with the flow day by day. I do plan ahead but try to make it flexible to meet his needs. That’s a great title for your thread, so keep your chin up and I am with you on that, trying to keep going too.
I have started to use a blackboard for mom, putting the day at the top and then the chores when they are completed, and other important things for the day, including where in the world my younger brother is. Then come pm the board gets wiped ready for the evening, which is when I tend to get stressed with the constant questions about electric blankets, beds, and pyjamas....anybody else looking at the board would think I had gone mad, but I find it works to a degree.
It is hard to keep your chin up and keep smiling, in my case it's the "me time" that I don't get, it seems that I am on the go from 5am till 9pm, but I will carry on smiling.
Thank you for your response to my thread. Coming to terms with it as a 'norm' is not easy at first but I'm getting there. You have helped me see that I need to enter into his world more rather than tell him the reality of the particular situation.
Thank you for your response to my thread. It does help to share our experiences so we don't feel so alone with the problems that dementia brings into our lives. I miss the banter and discussions that my husband and I used to have. Now he just needs me to agree with him and reassure him of all that is going on. Occasionally he will surprise me with something humorous which reminds me of his old self. Keep your chin up too.
Thanks for your response to my thread. Well done for carrying on smiling, sounds like you're getting no time to yourself at all. We all work out how to deal with the problems dementia poses in different ways and if the blackboard works for you that's fine. At first if my husband kept asking me the same question I would write down the answer and when he asked me yet again I would show him the answer but that just annoyed him, as it was telling him he had forgotten. These days the chores have to wait a little longer to get done. Hope you can get some respite.
Yes, it is am unfortunate element in all of this that our 'reality' is not that of those inhabiting 'dementia world'. One soon learns, at some cost, that to ignore that principle only exacerbates the situation and fuels potential anger or worse. Another tactic is to look upon everything in a positive light. That means that one's 'thinking' remains positive, come what may. The emptying of cupboards, the repeated question, the belief that you might have taken an item and hidden it, or perhaps that 'Uncle Bill' who passed away twenty years ago, has just walked across the garden lawn ..... all of this and more, is taken as read and NOT as always contrary to one's thinking, simply due to the fact that it is NOT factual. If that does not sound too obscure? Of course whatever tactics or approach we adopt, does not eradicate the sheer level of commitment and the physical and mental demands upon the carer. This can be a very tough road and a seemingly endless journey. But we are all of us different and human and we share a common challenge. The truly good thing about this forum is that one can 'debate' a situation with many others, without needing to step outside your abode. One of the 'positives' related to the electronic revolution - of which there are not too many I fear?
I agree with you @Hazara8 and I have written elsewhere of the through the looking glass world I live in. Everything is topsy turvey and I have no control over it but just have to keep nodding, saying ‘um’ to the same things over and over again. I guess we all get exasperated at times!
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Yes, we do. We are all human and one would need to be exceptional not to fall victim to exasperation at times.
My own perspective based upon my journey with dementia and my late mother, was that I knew that one day, it would all come to an end and she would no longer be here. Like when I was a young man, digging a trench all day and seemingly an endless, physically demanding task - would eventually come to an end and the aching muscles and fatigue, would abate. But I was still here, perhaps a little stronger and fitter. With dementia, the task is far, far greater and much much deeper than that inanimate trench and when the task is over, you remain in many ways fatigued, certainly . And yet I feel, stronger for all that and above all, much more capable of meeting life with all its varied challenges. And the fact that your loved one is no longer there to care for in that very special way which dementia demands, seems to temper everything that you do or indeed think. And I believe the fundamental reason behind that state, is that you touched upon those things which truly matter in life, both demanding and traumatic and loving and compassionate, each and every single day and night of that 'dementia' journey. You became aware of the fact that the loved one concerned was an innocent, despite the behaviour, the anger and the apparent contempt for all that you gave and gave so willingly from the bottom of your heart. Dementia was the enemy, for both of us.
And when you step into the empty silent bedroom -- still adorned with the all so familiar things which were part of an earlier, 'normal' life, the little pictures, that age-old hairbrush, the dressing gown hanging on the door, the slightly battered old slippers ... and all the rest of it, and all the sounds, the happenings, the scent of a person, the profound 'presence' of that person who was your own dear mother -- when that 'journey' has come to an end, you reflect on that journey, with all its ever so demanding content, the moments which seemed unbearable, uncontrollable, painful beyond words. And those other cherished moments, the gentle and loving smile, the sparkling eyes which told, without a single word being uttered, that the true meaning of love was unbreakable and impossible to eradicate, despite everything - then a little exasperation, or that moment you could not stifle a cry of despair, the endless changing of bed sheets, the night calls, the sheer sense of utter helplessness and isolation and 'when will this ever end!' --- all of that, like an album of images in your mind's eye, as you stand there, alone, in a deathly silent bedroom, informs you in a deeply meaningful way, that it was a journey which gave you much, much more than a genuine sense of worth, it endorsed the abiding truthfulness of your humanity, the essence of which, alike love, never dies. And it embraces you in a way which cannot be expressed in mere words.
