Later stages dementia - care at home?

[Amy]

Bruce,
So could you not get carers in to give care at home? Don't get me wrong, I am not questioning what you are doing. With mum I just have this nagging voice that says I could have given up work; we could have employed nursing care; then there is the other part of me that knows how tired and exhausted dad was, getting up several times a night, stuggling to get mum to the loo, dressed and undressed, on his own etc. You saying

therefore my advice to you is - if you are able - do it, for your sake and for hers.

has unsettled me; I was always told "there's no such word as can't", so have we really done enough?Mum is no problem to care for, just totally physically dependent; at the nursing home yesterday the manageress said "she's such a gracious lady" - she can't speak or do anything, but she will smile. But the idea of dad having to take the load again, and me living in fear of the phone ringing, I just would not want to go there again. I know dad is lonely, but he is coping. I hate the idea of mum being alone (we have insisted that she spends most of her time in the main lounge, because she does watch things around her, though what she sees we don't know, but the care staff talk to her as they pass.) As you said on another thread Bruce, the final stages could be another 5 or 10 years, or it could end tomorrow; I don't think (no, I know that)neither dad or I could take another 5 years of caring at home. Sorry, this has all come out a bit mixed up, but your comment threw me a bit.
Amy

 

[Brucie]

but your comment threw me a bit.

Good grief! Sorry about that.

My comment was addressed to Robert's message, in reassurance of what he was wishing to do. Not what I would do, but what he says he would like to be able to do.

If he truly feels that a particular road is the one to take, then if he doesn't try it at least, he will always wonder whether he should have. There are enough regrets in all this without actively making more.

But then I know that I couldn't have arranged care for Jan at home, given her condition. Mind you, this was 5-6 years ago now and perhaps there has been a miraculous change. I couldn't even get people in to sit with her during the day, or respite care, or a place at a day centre, and the local PCT had to be told about NHS Continuing Care within a nursng home - so how could I expect to get full time caring, funds to change a totally inappropriate house, and funds for the care.

So I tried every route I could for Jan, but eventually realised my active caring role at home was over and so I can live with that.

It is very easy to have noble ideas of what we can do, but circumstance and reality put the kibosh on it so often.

Reading your messages, I do believe that you have done all you can. You have come to the same solution as I have, and there's no guilt in that. Of course we wish so hard we could have done things differently, but in the end we do have other lives - including our own - to consider.

Please don't let my post to Robert upset you!!!!!!!

she can't speak or do anything, but she will smile

Even people with advanced dementia don't smile if they are unhappy. Jan has lost the ability to smile now, but I sometimes get a twitch of her lip and I know that's the new smile language for her.

 

[noelphobic]

When I join her I end up on the mattress beside her so I can speak directly into her ear - her brain has difficulty differentiating noises from many directions at once [this was an early symptom].

Hi Bruce

My mum is often distracted by other people's conversations and will frequently answer their questions when they are not talking to her or even in her company. She spent 8 weeks in hospital late last year and for quite a few of these weeks had the same lady in the next bed to her We would be trying to have a conversation with my mum and she would be answering Mary's visitors questions! We used to joke that we should go and sit with Mary and ask her the questions that we wanted mum to answer!

 

[Amy]

Hiya Robert,
Sorry I went off on a bit of a tangent earlier, now I'm thinking straight.
1) I fully understand you wanting to care for your wife at home, especially if she is nolonger aggressive.
2) I know how you feel about having to find care staff in the ch. One thing I find quite difficult with mum now, is having to get others to do those tasks that I am used to doing myself. Almost having to seek permission to do things for my mum.
3) I don't know what age you and your wife are, but if she is unable to weight bear, do you think that you will be able to cope with toileting and transfers between chairs and bed etc?
4) Will you require 24 hour assistance, and how do you feel about a third party being constantly present in your home?
5) You acknowledge that there will be added tiredness and stress. At present you say you spend what I presume is 5 hours of quality time with your wife. Do you think that you will still be able to give this if your wife is at home?
Despite these reservations, if you think that you can do it, and you really want to give it a go, then I would say "Give it a shot." If it works out well, then you were right, if it doesn't at least you will know that you did what you could.
I really did not want my mum to go into a Nursing Home, and as is apparent from other postings I do struggle with it at times, but dad and I know that we cannot cope any longer. I think even if we had had more care in, mentally we had both reached our limits. We have done our best; and being honest, I think that mum is more relaxed and probably looks less strained than she did when she was at home at times;dad thinks the same.
Whatever you decide Robert, we will be here to support you.
With love,
Amy

 

[Claire D]

For all the people who care

I have not visited the site for some time - which is good for me as I realise I have found my own strategies (through the great wealth of knowledge and support from the members of the site) to begin deal, as a daughter, taking on the responsibility of my Mum's Alzheimer's and my Dad's intransigence to get any form of care at home - having decided that there is no way she is going into another home (she now thinks her own home that she has lived in for 53 years is "a home" but not hers!) - and consequently doing everything himself - through guilt, being the "man of the house" or whatever else is driving him.
They are both 80 this year - and my Dad has now had a fall and also put his back out which meant that I completely "lost the plot" at home this week and burst into tears....... believe me this was the best thing that could happen. Dad realised how upset I was (and not as strong as I think he always believed), has agreed to go to the Doctors about his own back problems and also to get someone from the Carer's Association home to evaluate the situation.
I know this is just the beginning of another long journey but sometimes showing your own vunerability in these situations instigates the most amazing breakthroughs.
Bruce's words about entering their world (but not encouraging or denying it) - just being in the moment with my Mum has brought about some amazing times which have been funny, sad, emotional and illuminating all at the same time. I think, in a strange way, Mum and I have never been so close.
I now know she also worries about Dad (or the man who rushes about doing everything as she refers to him) and that has also helped me have some conversations with Dad about how she would be happy for someone to come in once a week to help him. Strange but true!!
It's almost been a reversal of information for me to hear and helped in my conversations with Dad. I think he relishes the fact that Mum and I now talk about almost everything where for all of my 50 years we have normally spoken about nothing that is important. Once again the "child/parent" scenario is playing itself out but the other way round. I hope that makes sense!!
You are all amazing caring, sharing and vital people taking time out to worry and be involved with your loved ones. Be proud, be sad, be happy but most of all don't ever give up hope of trying different ways of approaching this illness.
I have signed up to do the Nile Cycle Trek next year for the Society - still waiting to hear if I have a place............ the website has some incredible opportunities to raise awareness and be part of a charity which provides so much support and solace to those who are involved (in whatever way) supporting, caring and loving those who are close to us.

 

[janey]

'I have not visited the site for some time - which is good for me as I realise I have found my own strategies (through the great wealth of knowledge and support from the members of the site) to begin deal, as a daughter, taking on the responsibility of my Mum's Alzheimer's and my Dad's intransigence to get any form of care at home'
I'm very glad for you Claire.
'I completely "lost the plot" at home this week and burst into tears....... believe me this was the best thing that could happen. Dad realised how upset I was (and not as strong as I think he always believed)'
He sounds very much like my Dad - I think mine is just so wrapped up in Mum that it didn't occur to him that I wasn't coping as well as he thought - I too 'went to pieces' a few months ago, and have had fantastic support from my GP to enable me to find my feet again and deal much better with the situation.
'I know this is just the beginning of another long journey'
Best of luck with it.
'just being in the moment with my Mum has brought about some amazing times which have been funny, sad, emotional and illuminating all at the same time. I think, in a strange way, Mum and I have never been so close. '
This could have been me talking Claire!
'I now know she also worries about Dad (or the man who rushes about doing everything as she refers to him) and that has also helped me have some conversations with Dad about how she would be happy for someone to come in once a week to help him. Strange but true!!'
When my Mum could still regularly speak intelligibly she asked me all the time 'is he all right?' She worried about Dad a alot, and probably still does.
'Once again the "child/parent" scenario is playing itself out but the other way round. I hope that makes sense!!' Totally!
'I have signed up to do the Nile Cycle Trek next year for the Society - still waiting to hear if I have a place............'
Very best of luck - hope you get a place and that you enjoy it!

 

[janey]

For Amy

Hi Amy
I've sent you a message but you need to clear your inbox to receive it.

 

[maria29al]

Todays the Day....

,,,,that my Dad moves from the hospital to a Nursing Home.

It has been a hell of a time the last 3 months. He had a fall at home in December due to becoming confused during a UTI. He was taken by ambulance to hospital and has been there for the last 3 months. Both my other sisters have continually blamed me (I was at my parents house when Dad fell) for the fact that he is in hospital and I have received no support from them regarding Dad or Mum (who also has Alzheimers and has been struggling along without Dad at home)

My sisters seem to think that I wanted Dad in a Nursing Home...which is so untrue..and my youngest sister wanted to care for Dad at home. But she is not responsible enough to do this and I had to step in and object...she hasnt visited him in hospital as she says it upsets her too much and she wont help Mum in any way even tho she lives 5 mins walk away from her. I feel so bad that Dad is at this stage now and cant beleive the change in him over the last 3 months. I have had to work (I am a chef so work split shifts) and look after Mum, sort her medication and shopping etc and also look after my own kids. I am exhausted. The doctors said that Mum would not be able to cope with Dad at home as she would not have any night time care for him. We have found a lovely place for him to be now but I am wracked with guilt and sadness. I have received nothing but verbal abuse from my sisters to the point of having to ask BT to barr all calls from them....but there are still the emails! Has anyone else had anything similar with family members? It is breaking my heart to move Dad today but I realise it will be for the best for both him and Mum. I just feel so alone.

Sorry for whingeing on...but its so good to know I am talking to people who understand.
Thanks

 

[janey]

Hello Maria
First of all, you're not alone - we're all here for you. I'm sorry things are so bad at the moment - I can't offer you any real advice, although I'm sure other members will read your post who can help you. It sounds to me as if you've done the best thing possible for your Dad - he will be cared for and safe. Have you contacted your local Alzheimers Society branch? They may be able to help you sort some things out for your Mum. It sounds as if it might help if she had someone (other than you) visiting on a regular basis, or doing her shopping/cleaning? Have you talked to her GP/social services?
As for your sisters - it doesn't help to stop the abusive e-mails, but I'm wondering if they're on guilt trips too, and taking it out on you? Is there anyone, maybe a family member or friend of the family, who could be present (just to stop things getting out of hand) if you set up a meeting between you and your sisters? Your youngest sister may not be reliable enough to care for your Dad at home, but maybe she could do Mum's shopping?
Thinking of you...

 

[janey]

Robert

Hello Robert
I've read your posts and have been pondering your situation, which sounds so like my Dad's. My Dad has just heard that he's to go into hospital on Monday for essential spinal surgery - if that had happened when he was caring for Mum at home he would have simply cancelled the operation, putting his own health at risk (I know, because he already did so with his hip replacement, which he only agreed to on the third call, when Mum had already gone into the nursing home and he was only months/weeks away from becoming totally immobile). At the time he couldn't see that he was not only putting himself at risk, but Mum too. Fate intervened that time when Mum had a serious fall and was taken into hospital herself, from where we at least had time to find a good nursing home for her. If Dad had become immobile when Mum was still at home, well, I don't want to think about it! Perhaps unforeseen threats to your own health, and what would result, is one more thing to include in your deliberations.
Its helped me to look at things from your point of view as a husband - hope I can help you by giving a daughter's perspective! Very best wishes to you, whatever you decide to do.

 

[Amy]

Hiya Maria,
I hope that the move has gone well today, and that dad is nicely settled in. It is good that you have found a lovely place for him. It is such a difficult thing, accepting that you cannot care for your parents; I think we feel that we ought to be able to do it, and that we are letting them down. But as someone said to me, you are loving and caring for your dad, by ensuring that he gets the 24 hour care that he needs in a safe and pleasant environment.
It must be difficult not having the suport of your siblings. Maybe I shouldn't say this, but it struck me that if it was too painful for your sister to visit dad in hospital, then you are right, caring for him at home would be beyond her - you have to be able to put your own pain to one side, and see what is best for your loved one.
Hey don't apologise for whingeing, cos if you do I'll have to start posting apologies on all sorts of threads! You're not anyway, you are sharing your thoughts and feelings and fears, and that is what we all do. I echo what Jane said, you are not alone, switch your computer on and you have a whole host of friends who want to support you.
Let us know how today has gone. Take care.
Amy

 

[maria29al]

Hi

Thanks for the replies.
The move went smoothly and I went to visit Dad today and was totally amazed. For the last month in hospital he was bed ridden and asleep...today he was sat in a chair, dressed, eyes open, and moving his legs and almost pushing himself up in his chair. He was trying to speak and seemed aware of what was going on around him. he had eaten a full breakfast and the carer said he had a really good appetite!!!!!!...truly amazing!

Will let you know how he goes.

I am so glad I founbf this forum..has really helped me in the short time I have been on here...thank you all so much.

Love
Marion
x

 

[Robert]

Hello Janey, Amy, Brucie (and all who have posted on this thread started by Janey) thank you for your responses and words of encouragement.

I've read all 30 posts (to date) several times, and printed and highlighted all the relevant parts. I have been deliberating the possibility of bringing my wife home (from the EMI home) on and off for several months, wihout coming to any conclusion. There are so many factors to take into account that I aim to complie a list against which I can note how each aspect could be accomodated. Although 71 years old and my wife is 69, I'm fortunately fit and do not have any medical problems, but as noted in several posts, health can nose dive suddenly or even terminate, so what to do in that event is an important factor and will be No. 1 on the list.

The 5-6 hrs or so (plus 1-2 hrs preparation) I spend at the ch each day, are usually shared between caring type activities and quality time spent with my wife, which would simply be transferred fom the ch to our own home. With my wife's changed circumstances, ie not being able to stand, walk or feed herself, increasingly I assist the carers (with their acceptance) in these matters, including pad changes and helping my wife to bed at night, so have gained a lot of experience. Night time routines, turning my wife every 2 hrs etc will be new to me, but as I already seem to rouse 2/3 times during the night, I can practice beforehand.

I hadn't anticipated needing 24 hr assistance, but wouldn't rule it out if it proved necessary. I'm not expecting to need help getting my wife up, washed and dressed in the am. When caring for my wife before she entered the ch, I had just started buying-in a sitters time, which will required again.

My interests are a lifelong love of cycling and in recent years sailing, both of which would be curtailed, as they had to be during my previous time as a carer. Because my wife would be 100% dependant on me, I realize how important it is for a carer to have a little break each day if possible, to maintan sanity and hopefully a cheerful outlook. So that's another one for the list.

I'm under no illusion that however much I plan to make it possible to bring my wife home, circumstances will change as the disease progresses.

It's going to take some time to reach a decision (and probably have to allow for more bought-in help than indicated above) but when I do, I'll post it.

Take care,

Robert

 

[janey]

Do keep in touch Robert, and let us know how you're getting on. Take care.

 

[keepsmiling]

Caring at home

Hi Janey and all others

I may be jumping into this discussion a little too late and maybe inappropriately - I apologise as I have only just discovered this forum and have only had time to skim read the posts here - so apologies if I have missed the point.

But it seemed to me that the option of 24/7 care at home had not come up. And I am a bit of an advocate of it, because it seems that a lot of people don't realise that the possibility exists.

My mother is in the later stages of vascular dementia now, but continues to live in her own home with the support of full-time carers. In practical terms this means that the carer comes to live in her house and look after her (one on one) 24/7. Depending on the circumstances there is usually a regular 'team' of carers (two or maybe three) who will each live-in for 'shifts' of typically two or three weeks at a time, although longer periods (ie 6 weeks or so) are possible if the workload (and stress load) is not too intense.

I originally discovered this type of care existed when realising what my mother needed was something akin to the old fashioned 'companion' idea - someone in the house to help my mother, but not interfere with her living her own life as best she could. So initially the carer was little more than a sort of housekeeper and safety net.

Over the years my mother's condition has of course gradually deteriorated so that now the carer is responsible all aspects of my mothers care - just as a nursing home would be - except, of course, that the beauty of it is that my mother is still able to live in her own home, eating the food she prefers and the care is one on one.

It takes a special sort of person to want to go and live in someone else's home and give this type of full time care and over the years I have been consistantly delighted by the lovely, caring people who have taken such a personal interest in welfare of my mother. And of course because they are just caring for her, they not only 'feed her and wipe her bum' but also have time to spend to with her as a companion, assisting her to enjoy life and stimulating her.

I am very lucky that this has been possible in my mother's case, especially as it leaves me with the time and emotional energy to spend quality time with my mother and try to do the 'add value' bits.

However, I find that most people are unaware that this type of care is not only possible but widely available and more importantly not as inhibitively expensive as people might think. In fact, the cost of the carer is very similar to the cost of a nursing home place.

I am have missed the point Janey, but if your parent's home has room to accomodate a full-time carer, this might be a solution to your father's wishes, enabling him to spend his time with her, but without the day to day responsibility of tending to all her needs.

Please do feel free to email me if you would like to know more.

And if it isn't suitable in your situation, well hopefully it will draw other peoples attention to the fact that this is a possibility.

best wishes
Cathy