And so it goes on...

[Roseleigh]

That is something to hold on to thank you G. Both our husbands have gone from the heights of their powers to the lows of the end of life and you are right, that’s waiting for all of us, and theirs just happened to be loss of brain power.

I too have had big fat tears rolling down my cheeks today @Linton it overwhelms you at times, alternating with exasperation, it’s an emotional roller coaster. He is going to the care home where he went in May next week and the assessment was this morning carried out by one of the ladies who knew him from then and he did seem to recognise her, or at least said that he did but he does love to please. The four month gap shows up his deterioration starkly but I think it will be beneficial for both of us. I do worry about his lack of stimulation at home especially when I see him brightening up with the care lady interacting with him. She seems well trained for dementia care. I am feeling mentally and emotionally exhausted, not so much physically. I am fortunate that I can arrange it for when I had planned a holiday for us both, so it’s painful and not entirely welcome, because I shall miss the old him so much, as I have been doing just lately, futile I know. Take care and keep hold of good memories for both of you x

My OH is being assessed tomorrow for a first respite break at the end of the month. I feel worn out by his insomnia and restlessness. Like you I think its lack of stimulation, now he no longer gets much pleasure from TV, and reading ended months ago...

 

[Grahamstown]

My OH is being assessed tomorrow for a first respite break at the end of the month. I feel worn out by his insomnia and restlessness. Like you I think its lack of stimulation, now he no longer gets much pleasure from TV, and reading ended months ago...

It’s impossible for one person to do what it takes a team to do but at the same time I know that he is contented when he is on his bed in his room surrounded by his familiar things. It’s like a womb for him. The care lady yesterday was asking for items to stimulate his conversation, making suggestions as people are prone to do and it made me feel both inadequate and stubborn. Inadequate because it’s impossible for me to meet his needs 24/7 and stubborn because why should I have to at the expense of my well being. As if I haven’t been trying to do any of this at all, which I have. Duh...

 

[DesperateofDevon]

Yesterday there was a garden party for the development where we live. He ‘knows’ many of the people and a young woman who is fond of him came to our door with her mother whom he also knows and said are you coming for some food. I signalled to take him and they shepherded him a few yards and sat him between them with some sandwiches and a glass of something. People came up and spoke to him and he seemed to enjoy it. When he was sitting having his lunch today he actually said that there had been a lovely party yesterday so that memory was still there, which I found astonishing. If you are honest with people and allow them to help then some will step forward to help I have found. I was able to move about talking to people as he was taken care of.

Today for the first time I prepared his lunch and whizzed it up with some milk and took it to him in his bedroom where he sat on his small balcony and enjoyed it with no difficulty swallowing. Banana, a supplement milkshake and a smoothie to follow and that was all much easier. I felt quite gutted when he said that he would really like to take me out for lunch or dinner, as we sat there no longer able to enjoy a meal together because he is unable to eat properly and so weak. I am constantly being caught this way because watching him shuffle off between the two women yesterday, a shadow of the strong vigorous engaging man he was, though still able to charm people, really choked me up. I think that’s the hardest part of caring for him, the mismatch between his illusions and my reality. I live alone in the house with him but I am not lonely because people are kind, but it’s not HIM, and I feel that loss acutely.

I am thinking of you @Sarahdun and how you are coping without your partner in the same house as you. To be quite honest, I don’t think that matters, what matters is what is best for his well-being and yours. I think @kindred led the way recently in finding a way to do this without feeling ‘guilty’, having not wanted to do it at all because it’s not an easy thing to do. I understand perfectly about the cost, and I am very aware of how much it will be when I can no longer cope. The home care that has just started will keep us going for a bit longer, but when he is too weak to get out of bed and walk, I don’t think I can.

Doing the best interest for you loved one is one of the hardest things for everyone, but heartbreaking when it’s your life partner/ husband/ wife. ( apologies I’m trying to be politically correct, & probably failing & insulting more people than if I didn’t try!)
I admire & am in awe of those dealing with this daily for their loved one.
Ladies, gentlemen, carers on the this forum who are 24/7 carers you are everyday superhumans, & I am truly humbled & privileged to read your life experiences on this forum.
Thank you for being so honest & open about your lives & life experiences. You really are awesome!

 

[Grahamstown]

TP is always there to help when things are bad, and we can carry on for a while without logging on or posting when things are relatively stable. I feel grateful for that. It’s been very up and down lately after a period of sameness, for want of a better word.

Tuesday Wednesday and Thursday are easier with a bit of help. It’s a couple of hours each day but it does make a difference not having to interact with him myself all the time. I think it’s good for him too because he does have more mental stimulation.

 

[Linton]

Gently suggested yesterday to my OH about possibly him going to a center for an hour once a week to perhaps get chance to talk to other people and have something interesting to do instead of being at home all the time.... Didn't go down well.. And this morning still complaing that 'that woman' had suggested it to him.... Have to keep trying for my sanity.. And tho possibly of having helpers coming I. too.. up and dressed at 4 this morning... Gonna be a long day....... Love to all going through this xx

 

[canary]

I know that he is contented when he is on his bed in his room surrounded by his familiar things. It’s like a womb for him.

He has got FTD, right? This is really common with FTD. They get stimulus overload and like peace, routine, familiarity and often dim lighting. If he was in a care home he would probably want to do the same there.
If you can get him out doing other things, thats a bonus.

The care lady yesterday was asking for items to stimulate his conversation, making suggestions as people are prone to do and it made me feel both inadequate and stubborn.

And Id lay money that she is thinking of things that will help Alzheimers.
I expect that he is losing language and this is why he doesnt talk much

 

[Grahamstown]

Gosh @canary that is really interesting. His original diagnosis was mild late onset Alzheimer’s with mixed dementia but it’s been far from mild and I wonder if you are right. I shall look it up and I seem to remember someone else, maybe you, last year suggesting FTD. It would explain the way his situation has developed. At the end of the day, it’s catering to the symptoms that matters and the care home are aware of his bed fixation and do not push him to do things he doesn’t want to do. That makes me feel better because I am responding to his behaviour and trying to keep him comfortable and contented. Sometimes you do question yourself.

Today was a wonderful two hour break and lunch with an old friend. The carer who came today is the motherly one who got him up, dressed and fed and then sat and chatted to him about his past life that meant a lot to him. So far, so good and I think my little mental crisis is fading.

 

[canary]

It might have been me that suggested FTD - I cant remember.
I dont know why, but Ive got it in my head that he had been diagnosed with FTD. Certainly all his symptoms sound like FTD. As you say, though, you have to respond to their behaviour, irrespective of the actual diagnosis.

Im glad you are feeling better today. I think we all regularly question ourselves

 

[kindred]

It’s impossible for one person to do what it takes a team to do but at the same time I know that he is contented when he is on his bed in his room surrounded by his familiar things. It’s like a womb for him. The care lady yesterday was asking for items to stimulate his conversation, making suggestions as people are prone to do and it made me feel both inadequate and stubborn. Inadequate because it’s impossible for me to meet his needs 24/7 and stubborn because why should I have to at the expense of my well being. As if I haven’t been trying to do any of this at all, which I have. Duh...

There is always this focus on stimulation and activity ... In my new life as voluntary actovity coordinator I see this all the time. I see so many residents who will join in one activity with great gusto and then they have given their all and just want to go back to their rooms or sleep. Keith was happy with a small amount of activity but so often we kind of get pressured to be a bit manic and active all the time. It's not realistic or appropriate. With you all the way"
With love and best. Geraldine xxxxx

 

[Grahamstown]

Thanks to you both, very helpful. Looking at FTD I don’t think he has typical symptoms of that but may have some involvement of those areas of the brain. What you say @kindred chimes with my observation, especially the appropriate bit. I sometimes get into this loop of questioning, usually in response to something someone has said to me, but I always come back to the ‘experts’, those with 24/7 experience of living with it, and that calms me down. Love all round xx

 

[AliceA]

Hi, there I hope you are feeling better, even good things bring a stress of their own. Like the planning before the holiday, however welcome it brings its own pressures.
Sometimes I wonder whether labels are that helpful, so much depends on personality and environment inner and outer. I studied the person centred approach, many years ago, this is what we 24/7ers are doing.
We respond individually to the person and situation at the time. Reflecting and balancing, responding fully in the moment.
It is tiring to say the least, but easier than resisting because we have prejudged another's needs.
This is the trouble with advice isn't?
Someone said music would help my husband I thought well come and play some!
What do they think we do! Mine likes it sometimes, but bed and his room has become a haven too.
Kindred is so right some do like an activity, but then they fizzle out.
We must not comply then fizzle out ourselves. You take care, xxx

 

[Grahamstown]

Very wise words @AliceA thank you especially as you struggle away with your efforts to get support for your own dear husband. It’s easy enough for a few words to get to you when coping with this disease.

 

[Gladys1946]

Gently suggested yesterday to my OH about possibly him going to a center for an hour once a week to perhaps get chance to talk to other people and have something interesting to do instead of being at home all the time.... Didn't go down well.. And this morning still complaing that 'that woman' had suggested it to him.... Have to keep trying for my sanity.. And tho possibly of having helpers coming I. too.. up and dressed at 4 this morning... Gonna be a long day....... Love to all going through this xx

Gently suggested yesterday to my OH about possibly him going to a center for an hour once a week to perhaps get chance to talk to other people and have something interesting to do instead of being at home all the time.... Didn't go down well.. And this morning still complaing that 'that woman' had suggested it to him.... Have to keep trying for my sanity.. And tho possibly of having helpers coming I. too.. up and dressed at 4 this morning... Gonna be a long day....... Love to all going through this xx

I took my OH to a Day Centre yesterday for a taster session. He was furious. I ended up in floods of tears. Staff told me to go and leave him. I did but felt so guilty. DD picked me up and when we both went to pick him up he was sitting eating rice pudding and happy as Larry! It's just like taking a child to nursery. I will take him again next week and a fellow carer has said ignore their grumbling, just do it. I'm desperate for a bit of peace.

 

[AliceA]

Very wise words @AliceA thank you especially as you struggle away with your efforts to get support for your own dear husband. It’s easy enough for a few words to get to you when coping with this disease.

X

 

[DesperateofDevon]

I took my OH to a Day Centre yesterday for a taster session. He was furious. I ended up in floods of tears. Staff told me to go and leave him. I did but felt so guilty. DD picked me up and when we both went to pick him up he was sitting eating rice pudding and happy as Larry! It's just like taking a child to nursery. I will take him again next week and a fellow carer has said ignore their grumbling, just do it. I'm desperate for a bit of peace.

It’s just like the toddlers but in adult form with a bank account!! Mood swings, attention span, accidents etc. Cruel disease but I did smile at the “eating rice pudding & happy as Larry “.

 

[Linton]

Hi gladis 1946..you've given me some hope..I'll keep trying.. Must remember that he can't make decisions.. As you say..like a child who needs help... As do I..... Xx

 

[Grahamstown]

Carer’s health needs don’t rank very high in the great scheme of things to do with dementia. I finally booked a hearing test as being the least troublesome and told him I was going, upon which I foolishly got into an argument about mode of transport, him insisting I drove. So that’s another love lie to say, yes I’ll drive, because he can’t accept walking or bus. He couldn’t come anyway so I fed him, tucked him up in his bed and set off furious with myself for being drawn into his crazy world. I do need some help with my hearing and have returned, the proud possessor of a pair of hearing aids. So far I am getting used to them and I walked! Naturally he didn’t ask, hasn’t noticed them as they are very discreet. I pondered on the amazing NHS, which can afford a fortune for me for a one off item.

 

[canary]

Im glad youve managed to get your hearing aids and hopefully it will make life easier for you

furious with myself for being drawn into his crazy world.

Dont be cross with yourself. Its the only way to survive - you cant bring him back into the real world. Much easier for all concerned if you just agree and then do your own thing anyway.
xx

 

[DesperateofDevon]

Carer’s health needs don’t rank very high in the great scheme of things to do with dementia. I finally booked a hearing test as being the least troublesome and told him I was going, upon which I foolishly got into an argument about mode of transport, him insisting I drove. So that’s another love lie to say, yes I’ll drive, because he can’t accept walking or bus. He couldn’t come anyway so I fed him, tucked him up in his bed and set off furious with myself for being drawn into his crazy world. I do need some help with my hearing and have returned, the proud possessor of a pair of hearing aids. So far I am getting used to them and I walked! Naturally he didn’t ask, hasn’t noticed them as they are very discreet. I pondered on the amazing NHS, which can afford a fortune for me for a one off item.

I hope it was as lovely weather for your walk as it was here. The simplicity of putting one foot infront of the other, a rhythmic movement done at your own speed. Simple action, but not appreciated in full until you care for someone who struggles to do that.

 

[Spamar]

Or you can’t do it yourself!