And so it goes on...
- Thread starter Grahamstown
- Start date
The calender I bought, which holds all information regarding appointments etc on easy to read pages, has gone walk about. I keep it on a shelf under the coffee table where he can easily see what is happening today. It's not there and I have searched high and low.
Thank goodness I backed everything up in my diary.
Thank goodness I backed everything up in my diary.
How odd, I have just had a double dose of ‘what day is it today’ and ‘are we doing anything today’ in quick succession. I am beyond exhausted by all the nonsense and him trying to make out that he could climb a mountain, metaphorically of course. Perhaps I should write ‘nothing on today’ on the white board which has become quite effective. Patience at a low point today.
If that works @Grahamstown I will get one of those white boards. I've had "what day is it today" and "are we doing anything today" a dozen times already and it's not even 8.30 yet. This happens every day. Sometimes I get the same questions in the evening. It's almost as if he feels it's something he has to ask, pre-programmed. Boy is it exhausting!
I have set it up today with NO APPOINTMENTS printed on and propped up right in front of him and when he starts asking today I shall say in as neutral a voice as I can manage, have a little look at your white board. I got it for £2 at one of those small shops which sell everything for office and school. It’s bigger than A4Pen supplied which will rub the writing off but and I use anything like a tissue, cloth.
He has already had a bad start to the day, got up half an hour ago, wobbled into the kitchen and asking in a quavering voice if I would get his tea. When I took it to him he was sitting happily in his chair, legs up, scrolling through his iPad meaninglessly and said I love having my tea brought to me. Since I have been up, doing the clothes, washing up, fixing the filters on the cleaner, heaving myself on and off the floor, for ages, I was not impressed, in fact I nearly hit the roof. So he was instructed to get off his chair, carry on getting his breakfast which I had started and have it! If he goes on like this he will lose the use of his legs, he has trouble getting up and down the stairs now and is so thin it hurts me to look at him. He is now back in his chair and said brightly, no appointments today as he read the board. Result!
I have started the third module of the Understanding Dementia course with U Tasmania which is all about the person suffering from it, and all the parts are person centred. In other words they try to show the way individuals differ in their symptoms from one to another with the same disease and from one type of dementia to another. I have already picked up a few tips about symptoms, why they do them and how to handle them. I have tried again today and so far my exasperation levels have been low. It’s just so hard to accept that you have this damaged stranger who once was your husband. When they describe the correct responses of the staff to all these symptoms, I think that I am running a care home for one where there is only one member of staff, me.
I can manage my care home for one with just me for staff for just so long, and then I start losing patience because it’s time for me to ‘go off duty’ but I can’t because there are no other staff. The sundowning evenings get quite difficult and I am tired. Still I have managed to be patient today and tomorrow we go on holiday. He really is deteriorating in every way but still can just about function. I have packed all our stuff and now just hope the arrangements for tomorrow work out, the most difficult being to get him up, dressed and fed ready to go. The white board is printed up with the schedule for tomorrow and he keeps repeating it. If I get a chance I shall post our travel experience.
Hope it all goes well with the holiday and you get a chance to actually be off duty some of the time.
I'd be interested in any tips you pick up as my SiL and I are taking mum away in June and I know it doesn't take much for her to have a meltdown
I'd be interested in any tips you pick up as my SiL and I are taking mum away in June and I know it doesn't take much for her to have a meltdown
Things have moved on in the past five weeks. The holiday was in the nick of time because he has deteriorated physically and cognitively and he is no longer fit to do the traveling necessary for our holiday in three weeks time partly because of the flying whereas we went from Southampton in March. So I am arranging respite for him and for me, an emotional roller coaster but I have had another thought. I think he needs a break from me. It is quite unnatural this two of us together all the time with me directing his life because he can’t do it himself even though he thinks he can. That’s an experiment I cannot think of doing. I really do think that his dependency is becoming unhealthy for him let alone for me and I have read other posts describing that feeling of imprisonment. It is so unlike our previous lives when he did everything he needed to for work including leaving me to hold the fort while he went off for days at a time as well as his weekend golf. So I carved a life of my own and now that has gone and I am finding myself becoming paralysed by this disease too. I do feel trapped and I am making a small effort to make a change to help carry on. Time will tell but at the moment it really does go on and on...
He was up and dressed making his tea at 8am before me! Now he is getting his own breakfast, amazing. Before I could get too carried away I have been trying to help him fill in the “About Me” book given to me by the care home. We started yesterday evening but it was hopeless so I thought I would try and help him again while he was fresh this morning. The extent of his memory loss is shocking, profound and painful. He has been able to say one or two things from long ago, but otherwise it has all gone apart from his date of birth. The only things that he can say give him pleasure are being here with me and lying on his bed. That is in fact the extent of his life now and I am sorry to say that it makes me feel suffocated. I feel very despondent and it is too great a burden to bear but when I write this I think of those of you who are in a similar position. It is destructive to my health and well-being and I have little choice but a bad choice, for a couple of weeks respite all arranged now.
Oh @Grahamstown - it can be a wonderful break - go enjoy it and replenish yourself !! BTW my husband manages better with carers without me !! It’s true - 
And I have a new plan for myself and luckily a niece who wants casual work - she calls in and my OH is totally at home with her. I am planning a night away - half a night one week as a trial- then full night the next week - (showering is an issue - but if he doesn’t change I don’t mind !) ! The big plan is a night away for me each month - bliss. - maybe sometime I too will have a whole week !! I think I can manage anything given time off !!
And I have a new plan for myself and luckily a niece who wants casual work - she calls in and my OH is totally at home with her. I am planning a night away - half a night one week as a trial- then full night the next week - (showering is an issue - but if he doesn’t change I don’t mind !) ! The big plan is a night away for me each month - bliss. -
maybe sometime I too will have a whole week !! I think I can manage anything given time off !!
Dear @Mudgee Joy thank you for your encouragement because I need it and I think you are right and he does need other input now. His dependency is becoming oppressive and I sometimes think he wants me to become dependent too. This may be nonsense but sometimes I think he senses his dependence, tries to make out that he can function perfectly well which really gets to me, and then tries to bring me down to his level. Yes it IS nonsense but I need some respite to re establish my sense of self which has started to be eroded since he got worse. I have always been mentally tough but this disease makes even the strongest person crumble. It’s not going to be an easy first step but I must stay firm. I am very happy to hear that some more help is coming your way and I shall be keen to hear how it goes. I have some carer contacts via a friend and that is my next step. I have managed all this time but now I need it xx Sue
This is one of the more honest articles about Alzheimer’s disease in recent months and chimes with the information on the Understanding Dementia course.
The young are now key to the battle with dementia
http://www.thetimes.co.uk/article/87998122-6838-11e9-adc2-05e1b87efaea
The young are now key to the battle with dementia
http://www.thetimes.co.uk/article/87998122-6838-11e9-adc2-05e1b87efaea
A very interesting article.
Of course we all know we are going to die, but few accept it and make the most of what they have in the present moment. This brave lady has had more warning than many, so is really living.
I think there are often warnings about the onset of a dementia type illnesses that are ignored, many of us have had had many years between mentioning concerns and the crisis that has led to diagnosis.
Yet in so many cases with hindsight I think it is possible that a pattern could be recognised, questions that need to be asked and answered. In vascular dementia the signs of small vessel disease were there in the extremities long before. Is this a clue? Are observations of those living closely listened to?
Equally is society supportive of those making sensible plans for the latter part of a lifespan?
The origins of sheltered housing were eroded when wardens were replaced with house managers.
Is downsizing supported in the area people want to stay within. Is society supporting independent living.
Some countries as shown on the Real Marigold hotel series provided centres to keep older people engaged and fit with free accessible activities. Our governments have cut accessibility and isolated people by axing transport and services.
Lack of a social care policy with a possible cap has prevented people making realistic plans. Had a policy been in place I am sure insurance firms would have spread the actual cost as they do with other policy solutions such as house insurance.
Of course we all know we are going to die, but few accept it and make the most of what they have in the present moment. This brave lady has had more warning than many, so is really living.
I think there are often warnings about the onset of a dementia type illnesses that are ignored, many of us have had had many years between mentioning concerns and the crisis that has led to diagnosis.
Yet in so many cases with hindsight I think it is possible that a pattern could be recognised, questions that need to be asked and answered. In vascular dementia the signs of small vessel disease were there in the extremities long before. Is this a clue? Are observations of those living closely listened to?
Equally is society supportive of those making sensible plans for the latter part of a lifespan?
The origins of sheltered housing were eroded when wardens were replaced with house managers.
Is downsizing supported in the area people want to stay within. Is society supporting independent living.
Some countries as shown on the Real Marigold hotel series provided centres to keep older people engaged and fit with free accessible activities. Our governments have cut accessibility and isolated people by axing transport and services.
Lack of a social care policy with a possible cap has prevented people making realistic plans. Had a policy been in place I am sure insurance firms would have spread the actual cost as they do with other policy solutions such as house insurance.
I absolutely agree with you @AliceA and mourn the failure of David Cameron’s 2012 initiative which died in the flames of austerity and what followed. This care home I have fixed on, even though it costs more than many it’s not that much more in the great scheme of things, has double rooms, and there are both non dementia and dementia people so a mixed community with shared public rooms when appropriate. In fact when we have been for coffee and lunch we have chatted to other people living there as if on a cruise I may say! I say a cruise because people tend to be chatty unlike hotels. I sometimes think I should sell up, get an annuity and check us both in! The only snag is that I wouldn’t want to share the bedroom.
