Should I do more?

Grahamstown

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Jan 12, 2018
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I have been enquiring about day care and dementia cafés because my husband has declined to the point of sleeping, sitting in his chair, having little walks in our adjacent nature walk, watching television but unable to concentrate and generally doing nothing. He eats small amounts regularly and can make a cup of coffee or tea but then forgets to drink it. He would also forget to eat. He can still get himself up, dress of a sort and shower with me reminding him, and he can still go to the toilet alone. He has started not wanting to come with me to visit our friends who have all been very supportive. I wondered if I should push him to do more which would entail a huge amount of effort and pressure from me. I had a very helpful conversation with the manager of a day centre and he suggested that I seek more advice and I thought where better than TP. He is also very happy and contented and can be left alone still for short periods only in the mornings when he is better. I simply don’t know what to do for the best, let him be, happy in his own world or push him to do more with suitable support and give myself plenty of grief. For a start I would have to get him up in the mornings to go, and he has started lying in until mid to late morning.
 

Beate

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May 21, 2014
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London
If he is happy and content, I would leave him be. Not everyone likes to socialise, and maybe crowds of people and noise now frighten him. In my opinion it is a myth that people with dementia need constant stimulation for their own good. On the contrary - often they just need peace and quiet.
 

Prudencecat

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Dec 21, 2018
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I would leave him be if he is settled and you are coping. My mum likes things to be quiet and calm any change in her routine makes her agitated. Sometimes I think just because it isn't a life I would want to lead it doesn't mean she isn't happy in her bubble.
 

karaokePete

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Jul 23, 2017
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N Ireland
It is supposed to be true that activity and social interaction is a means to keeping the brain as healthy as possible for as long as possible and so I encourage my wife to be more active. However, I don't push her so her main activities are often sleeping and watching TV.

I have found that pushing my wife creates unhappiness for both of us so I don't see the point of going beyond gentle encouragement.
 

Beate

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May 21, 2014
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London
That is certainly true if you don't have dementia, but I think once you do have it, nothing much can stop the deterioration, and different rules start to apply. PWDs can get overwhelmed by social situations so I think it's best not to force them.
 

Grahamstown

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Jan 12, 2018
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Thank you for your advice which is very reassuring. I feel that too but well meaning people do keep suggesting activities to stimulate him and it makes me feel as if I should be doing more. When I looked at the other activities as part of my searching, the photos show smiling people engaged in all the usual things but it struck me that he would struggle. He is contented, life has closed in over the year since diagnosis and even 3 months ago he would enjoy social life with me. I am going to carry on because I am managing and still able to have a limited life myself. I organise it to accommodate his needs and he is very accepting, never aggressive always loving. I know what to do now, say that I have taken advice and because he is contented there is no need to push him to do any more.

Just to add that it’s the obsessions and aberrant behaviours of this illness that is so difficult for me, not the nothingness of his life following a full successful one. It breaks your heart doesn’t it?
 

marionq

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Apr 24, 2013
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Scotland
Different approaches for different stages I think. At the start I thought I could fend off decline with lots of involvement in Alz groups, trips to beauty spots, walks in the woods, visits to theatre and cinema. Some worked for a while but nothing worked for long. Over the last six or seven years I have constantly adjusted my approach and this now accepts that my husband wants to be warm and comfortable and not have his routine disturbed.

He is currently in hospital and has settled into their routine too most of the time. Any upsets have happened when he is taken unawares or been asked to do something he doesn’t want to do or doesn’t understand. I’d let your husband be at ease with himself.
 

Grahamstown

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Jan 12, 2018
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At the start I thought I could fend off decline with lots of involvement in Alz groups, trips to beauty spots, walks in the woods, visits to theatre and cinema. Some worked for a while but nothing worked for long.
You are so right, the first few months were full of such activities and it’s since just before Christmas that this phase set in. I shall leave him be. I have found a lovely lady to do home manicure and pedicure and she is coming today. He looks at his photos a lot and says how much he would like to go on a cruise again. I booked one last year for May, feeling positive, and I shall aim to go realising that we shall be very limited.

I think I am shell shocked by the speed of it all. I have not had to endure years of this disease, but I have no idea how long it will last and don’t think about it.
 

Grahamstown

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Jan 12, 2018
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I have looked at one of the suggestions, Dementia Compass, and I thought that I would love doing all those things but it would be nothing to him, and would be an ordeal. That has been the problem all along, people can’t imagine living such a life and try to make suggestions of things they would like to do.
 

Grahamstown

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Jan 12, 2018
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I guess I have my answer now, I have had a great struggle to get him up, dressed and breakfasted for the pedicure at 11am. I cannot imagine having to do it to go to a day centre. He can’t do it to go to friends for coffee. Thank you all for helping me to decide the best decision for now.
 

AliceA

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May 27, 2016
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I was thinking the very same thing Grahamstown this morning, our husband's are at a similar stage.

I have tried for day centres to no avail and I am thinking we are now past the need.
My husband's needs have changed. Could I get him out on time with all the anxious anticipation?

The advantage would have been I would have had some free time but with no transport could not have gone further than the village. Unfortunately for me he cannot be left alone at all.
So what to do? Any ideas?
I have interests so use time when he sleeps to fulfill these. Early today I snuggled down to listen to a talk, unfortunately dropped to sleep, fortunately it is on the iPad so I can try again. Sometimes I put on earphones while he watches TV also with earphones, if it is a match he does not need me but likes to know where I am.

Our volunteer drivers for medical appointments have sometimes proved a source of a good conversation, my guardian angel works overtime! Today a friend is calling. I email people. Sometimes Phone calls are more difficult. My husband double guesses the conversation.

Should we do more? Yes, for ourselves, our own wellbeing.
That I think reflects back to those we care for more than anything. We cannot act lovingly if we are ground down. I know I have to tackle life in the morning as by evening I am like a zombie too tired to read.
Monday was a prime example, I spent virtually all day on the phone trying to arrange transport at short notice. By evening I exhausted and not so patient, I was a bit short and hurried. This rebounded back, my husband became more anxious and not so easy.
So the simple quiet life has its own blessings. I think I shall spend more on flowers and home treats, the manicure for him sounds a great idea. Easy meals, more garden time when the weather is clement.
I am excited by a smal Valentine blanket I have designed, some mentioned Bags of Love on TP, it incorporates all the family names around a heart. I hope I will not be disappointed. It is on its way, I will not keep it for the 14th. In my book any day can be any date I want. We once threw a surprise 'unbirthday' cake candles the lot to show appreciation.

Perhaps those of us 24/7s need to be more generous with ourselves, my motto is cheaper than a care home.
Not that things need to be expensive to give a bit of wellbeing.
Perhaps we should all treat ourselves to a bottle of perfume, flowers, a book.

Like you , I shall say The Advice now is .................................. to the clueless who for their sake I hope never have to be as clued up as we have to be on here.
 

Grahamstown

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Jan 12, 2018
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I agree with all you say @AliceA and realise that I am the one who needs a bit extra. The young lady who comes to attend to his hands and feet is lovely and I found her through Nextdoor the neighbourhood online group. I was on it when we lived in the village and transferred to our local area in town. There is an app and I have sourced several local services through it. I suddenly had the idea to ask her if she knew anyone who would do caring for my husband, making sure that he eats and drinks so that I could stay out without worrying. She said she would love to do it herself but she is going to work in Ibiza for the summer but will ask her friends. She would probably help when she gets back and he really likes her. The conversation was priceless, personal questions he would never have dreamed of asking like why isn’t she married. Actually it’s quite illuminating listening to the conversation which gives me an insight into how his mind is working. It’s not the same with me. She took it all very well and clearly is good at her job and works at the hospital too as a personal trainer. I am also listening to programmes on the BBC Sounds app and follow several interesting things.
 

PalSal

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Dec 4, 2011
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Pratteln Switzerland
I agree with all you say @AliceA and realise that I am the one who needs a bit extra. The young lady who comes to attend to his hands and feet is lovely and I found her through Nextdoor the neighbourhood online group. I was on it when we lived in the village and transferred to our local area in town. There is an app and I have sourced several local services through it. I suddenly had the idea to ask her if she knew anyone who would do caring for my husband, making sure that he eats and drinks so that I could stay out without worrying. She said she would love to do it herself but she is going to work in Ibiza for the summer but will ask her friends. She would probably help when she gets back and he really likes her. The conversation was priceless, personal questions he would never have dreamed of asking like why isn’t she married. Actually it’s quite illuminating listening to the conversation which gives me an insight into how his mind is working. It’s not the same with me. She took it all very well and clearly is good at her job and works at the hospital too as a personal trainer. I am also listening to programmes on the BBC Sounds app and follow several interesting things.
Hi @Grahamstown.
I agree with everything people have said about peace quiet and routine. My husband loves all those things. But it was the long haul for us....I am glad I kept him going out and walking daily. Now the daycare two days a week gives me two eight hour slots of freedom. I have a full life still, singing classical music, attending concerts and art exhibitions, and singing in my rock band. Even if it is just to be at home alone. (I am very fond of time alone with no one watching my every move, and activity).
I was once criticized on talking point by someone for insisting he dress in something for something for an event we were attending. I have no regrets about these choices I made, and the efforts to keep him presentable. He is always clean and well dressed...and I think he still makes a good first impression which is worth something. But it would be easier not to keep him well...let him look a mess. But he was and is still a handsome man, and always wore lovely clothes and dressed well. I think it is what he wants.
I understand if you are too tired to make arrangements for him, that is quite a different matter. Especially if he is resisting. As long as it makes you happy to have a very quiet life and stay at home, fine, but if it is because you are too tired to get him prepared for a daycare....hummm . That sounds to me like you could really use the daycare...but what do I know.
It is the balance and the scales, swings and roundabouts, how much is it worth? I think the time may come for me that it is just not worth it.....but for now I still try and get out a few times each week.
Good luck.
 

Grahamstown

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Jan 12, 2018
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and the efforts to keep him presentable. He is always clean and well dressed...and I think he still makes a good first impression which is worth something. But it would be easier not to keep him well...let him look a mess. But he was and is still a handsome man, and always wore lovely clothes and dressed well. I think it is what he wants.
I do the same and make sure he is shaved and presentable, I take him to the barber every now and again for a proper shave and haircut, together with the hands and feet, things easily taken care of before. He has lost a lot of weight and his trousers are loose so if we are going out I have to use better fitting but less manageable ones. He is going out less and less though. If I could find a carer in the home that would be a great help but they are like gold.
 

Grahamstown

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Jan 12, 2018
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Early today I snuggled down to listen to a talk, unfortunately dropped to sleep, fortunately it is on the iPad so I can try again
I have just had to listen to a programme three times to manage to get through it. I shall even listen a fourth time to catch everything!
 

Lawson58

Registered User
Aug 1, 2014
4,398
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Victoria, Australia
I am very aware that my husband is very different to just about all the other PWD on TP and the way he presents creates a different set of problems.

He was an ardent bridge player prior to his diagnosis and has continued to play bridge up to the present time, becoming Individual Club Champion last year. So he happily goes off to the bridge club four times a week which blissfully gives me time for myself, not necessarily to do things but time for me just to sit, watch a program that I know he hates, have a Nana nap, go for a prowl around my favorite nursery, see a friend for coffee.

You would think that if he can play bridge which requires a particular type of memory, then he would be fine in other areas. Not so. In 2004, we decided to relocate to a Spanish speaking country so spent some time learning basic Spanish. There was a set of CDs and some books and we diligently practiced every night.
When we arrived there we were surprised to find that the locals spoke a heavy dialect, so bad that native Spanish speakers couldn't understand them. In spite of this my husband was determined to 'master' Spanish.

So we relocated to Australia in 2007, but my husband has persisted in continuing on with the Spanish. Believe me, hearing the same Spanish CDs for 15 years is enough to drive me nuts. Obviously he enjoys the routine and may even enjoy the sounds and familiar voice of the instructor and just as obviously is finding it difficult to progress. I purchased a different set of CDs just so I didn't have to listen to the repeats but that was a total fail because he believed he was doing very well on the old ones.

He has no memory of his childhood and growing up. The first memory he has is of meeting his wife and the early days of his marriage and his two boys. Now, he finds it difficult to follow a simple instruction, cannot use a mobile phone or drive, gets confused about times and days, asks me weird things about myself and so on it goes. There are other gaps in memory over the years but his short term memory has only deteriorated in the last few months.

I know there is all this stuff around about retraining the brain but I have to wonder about how successful it can be with advancing dementia patients. My husband obviously gets plenty of mental stimulation and social interaction but it has not prevented loss of cognitive function in all other areas. I feel that his brain works a bit like tunnel vision where everything else gets blocked out except for his focus on bridge. I asked him once why he persisted with the Spanish and he replied that he enjoyed learning the language. It is apparent that real learning has not happened except that I have learned how to avoid hearing it over and over again.

Current thinking is all about 'using it or losing it' but I suspect that might be because they still don't much else to suggest. My husband is using it but is definitely losing it, perhaps a little more slowly than most.



I
 

Chrissie B

Registered User
Jan 15, 2019
97
0
North Yorkshire
Thank you for your advice which is very reassuring. I feel that too but well meaning people do keep suggesting activities to stimulate him and it makes me feel as if I should be doing more. When I looked at the other activities as part of my searching, the photos show smiling people engaged in all the usual things but it struck me that he would struggle. He is contented, life has closed in over the year since diagnosis and even 3 months ago he would enjoy social life with me. I am going to carry on because I am managing and still able to have a limited life myself. I organise it to accommodate his needs and he is very accepting, never aggressive always loving. I know what to do now, say that I have taken advice and because he is contented there is no need to push him to do any more.

Just to add that it’s the obsessions and aberrant behaviours of this illness that is so difficult for me, not the nothingness of his life following a full successful one. It breaks your heart doesn’t it?
Why do I get the feeling that your friends don't really mean you aren't doing enough for your husband, but they are trying to tell you that you are overdoing things, but that you are too kind to think about yourself?
The day center my mum goes to has a sitting service. What happens is that in cases of what you do, in that you are a full-time carer who doesn't get paid, they offer a sitting service. They charge £2 an hour for this service. Someone comes in to your house, sits with your husband or in a room of your choice and you get to have some time either socializing or shopping in peace without worrying because if there was a problem they would ring you.
In answer to your question should you be doing more? I would say yes, but only for yourself, sounds like you deserve to have some youtime.