I'm dreading Friday

[dumpygirl]

It is some time since I have posted on TP but feel I want to write down my feelings and may be someone will come along to reassure me that all will eventually be well and that I am doing the right thing.
My husband was diagnosed with alzheimers about three years ago which is when I joined TP, I have been popping in and out of TP most evenings since then but not actually started a new thread.

Unfortunately things have reached crisis point now and I felt, along with my very supportive family, that I needed to look for a good care home as I could no longer give him the care he needed.
I would have liked him to go into the Care Home where he has attended for day care but the waiting list was very long and no hope of a vacancy in the near future.
My Social Worker found a very nice care home which she thought would be suitable for him and I went and had a look and liked what I saw and felt confident that it would be the right place for him to be. SO next Friday morning my two daughters and myself are going to take him there and we are not looking forward to it. He has been in respite several times and always been difficult when going in and made us feel really guilty but the carers tell us that after a short time he does settle. But this is different because it will be permanent.
We are going to the care home on Thursday evening and have bought a lovely Welsh Duvet Cover and matching curtains as he is very proud of his Welsh routes. We will also put up pictures and some treasured ornaments and of course his television set.
We will go for coffee and leave just before lunch. I just don't know what to say to him as I feel sure he will object very strongly when we leave.
Anyone any tips for how to go about this.
For now this is all that I am worrying about but next week they are sending a Benefits Officer to do an assessment and then make a decision as to how much I will have to contribute towards his care (I am not self funding) and whether or not I can get pension credit. I only have the very basic pension and will really have to budget like I have never done before. But one thing at a time and I will cross that bridge when I come to it.
Thank you for reading this.

 

[stanleypj]

Dumpygirl. I really feel for you. This is a situation that everyone finds difficult. I'm glad you have your two daughters standing by you. I'm sure other TP members who have had experience of this will be along soon to share their thoughts and feelings. I imagine it's something that is very hard to contemplate but perhaps, like every other stage in the journey, you will learn to cope.

Have you thought of contacting the Society helpline? I know many people have found this very helpful. Here's the information about it:

http://www.alzheimers.org.uk/helpline

 

[Izzy]

Hello Dumpy Girl.

I'm so sad to read your post, my heart goes out to you. I have no experience to help but as Stanley says others will be able to share their experience with you.

Thinking of you and your family. x


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[betsie]

So you don't come back to an empty house on Friday, could you stay with one of your daughters for the weekend or have them stay with you?

I took my dad to the care home and felt so awful. I think what ever anyone says it will be hard. As I have read many times, it is because we love them that we know they need better care than we can give them at home. It doesn't mean we have failed or love them less.

It is a new chapter and I am sure it will take time for you to get used to. You will have to adjust to having time for yourself again.

 

[LadyA]

Of course you are dreading it. Why wouldn't you? And yes, it will be terrible - probably one of the hardest things you will ever do. And for a while after, the Guilt Monster will be whispering in your ear that maybe you could have gone on managing after all. Maybe, things would have been ok. But that's what my friend used to call "magical thinking". What I would advise you to do, with your family, is to write down now all the things that have brought you to this point, to this decision. Because you will need to be reminded of them in the weeks to come. You've said it in your post - "I could no longer give him the care he needed."

I'm like a broken record, or a cd with a scratch on it, stuck on repeat on TP, saying this over and over, but I'm going to say it again: Often in caring for a loved one with dementia, there comes a point when making sure they have the very best care means we have to let go and let someone else do the day to day work of care. It often becomes too big a job for one person to do alone. And too often, the support - the amount of practical, physical, hands on support - needed, simply isn't there.

My husband has been in a nursing home now for the last ten months. Yes, it was awful for the first several weeks. But he did settle - and to see him even during those early weeks thrive physically because he was now eating & drinking properly, which he refused to do at home, because he was clean & washed, which he refused to allow at home - to see him look around with interested eyes at goings on around him - he would not engage with anything at home. Hard as it was, all these things confirmed that the decision was the right one for him at the time. And once he settled, he felt so much more secure there - always someone around to help him, even in the middle of the night! He couldn't get lost - there was always someone around! At home, I couldn't be awake and alert 24 hours a day, and he was only sleeping 1 1/2 to 2 hours at a stretch.

And once he settled, visits are so pleasant - he's always glad to see me, and we can have some good quality time together. I'm not exhausted and stressed, and neither is he. Transferring to full time care is never what we want - but when it is necessary, then it can be a positive thing for you both.

Hope it goes well. xx

 

[dumpygirl]

thank you

Of course you are dreading it. Why wouldn't you? And yes, it will be terrible - probably one of the hardest things you will ever do. And for a while after, the Guilt Monster will be whispering in your ear that maybe you could have gone on managing after all. Maybe, things would have been ok. But that's what my friend used to call "magical thinking". What I would advise you to do, with your family, is to write down now all the things that have brought you to this point, to this decision. Because you will need to be reminded of them in the weeks to come. You've said it in your post - "I could no longer give him the care he needed."

I'm like a broken record, or a cd with a scratch on it, stuck on repeat on TP, saying this over and over, but I'm going to say it again: Often in caring for a loved one with dementia, there comes a point when making sure they have the very best care means we have to let go and let someone else do the day to day work of care. It often becomes too big a job for one person to do alone. And too often, the support - the amount of practical, physical, hands on support - needed, simply isn't there.

My husband has been in a nursing home now for the last ten months. Yes, it was awful for the first several weeks. But he did settle - and to see him even during those early weeks thrive physically because he was now eating & drinking properly, which he refused to do at home, because he was clean & washed, which he refused to allow at home - to see him look around with interested eyes at goings on around him - he would not engage with anything at home. Hard as it was, all these things confirmed that the decision was the right one for him at the time. And once he settled, he felt so much more secure there - always someone around to help him, even in the middle of the night! He couldn't get lost - there was always someone around! At home, I couldn't be awake and alert 24 hours a day, and he was only sleeping 1 1/2 to 2 hours at a stretch.

And once he settled, visits are so pleasant - he's always glad to see me, and we can have some good quality time together. I'm not exhausted and stressed, and neither is he. Transferring to full time care is never what we want - but when it is necessary, then it can be a positive thing for you both.

Hope it goes well. xx

Thank you everyone who has already replied to my post. I really did not expect anyone to contact me at this late hour but I am so grateful. It is really helping me to read your posts and although I am dreading Friday - it will pass - and hopefully all will be well in due course.

 

[2jays]

It is really helping me to read your posts and although I am dreading Friday - it will pass - and hopefully all will be well in due course.

Hi Dumpygirl

All will be well - in due course xx

Please make sure you contact someone outside of social services as regards to your own finances before you meet with the financial bod who is letting you know what your options are financially. Sadly I have read too many times on here of the "wrong" information being given by the social services financial department as they do not necessarily have the full information on your financial rights, only on your husbands side of things.

I wish I could give you links to the information that would help you, but I'm sure someone from AgeUk, or the Alzheimer's society or even CAB, will know exactly what you need to know and will help you prepare for the meeting next week.

There are advocates who can support you at meeting like these, and those mentioned above, will also know how to contact one in your area.

Good to see you posting. Sad that you have the need

It's hard moving someone into care emotionally for yourself. I never had a good relationship with my mum before she went into care, but I still found it very hard to move her there, I think my guilt monster went into overdrive but with the support from TP it doesn't rear its ugly head so much. I hope you too find the support I have found on here.

I don't think your OH needs to ever know it's permanent, only that it's a respite - white lies are ok, tho not always nice to say. Its not going to be easy for you to answer the question of when am I coming home, but suggest you use a white lie of something like.... When they have sorted your tablets or something that is appropriate for your situation that he will "accept"

An awful time for you. Thinking of you xx



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[Grannie G]

I feel for you dumpy girl. I was in the same position over five years ago.

I told my husband the home was a convalescent home and the doctor wanted him to stay to build his strength up. Deep down he must have realised he was failing because he accepted this excuse. After a very short time he settled well and became as contented as I could have wished.

The house was empty but at least I was able to sleep and knew he was safe. It was a relief others were sharing the caring.

I visited every other day and had better times with him than I had had for 10 years.

I hope this helps.

 

[LYN T]

Of course you are dreading it. Why wouldn't you? And yes, it will be terrible - probably one of the hardest things you will ever do. And for a while after, the Guilt Monster will be whispering in your ear that maybe you could have gone on managing after all.

Dumpygirl, please remember these words! Lady A has stated very clearly how so many of us feel. I remember when my OH went to a CH he was pleasant, co-operative and had a smile on his face. I even posted on this Forum that he had gone to a CH far too soon-I even considered bringing him home. Others, more wiser than I was, advised differently. How right they were! I had blanked out the aggression/agitation and unwillingness to agree to personal care. Pete was doubly incontinent and could stay awake for 48 hours at a time. All those things somehow seemed to fade once I could sleep for a few hours at night.

Your OH needs more care than one person can give him; let others step in now. It's no failure to admit you have come to the end of your tether. You will still be his Carer/wife/champion.

Good luck to you

Love

Lyn T XX

 

[Saffie]

Hi Dumpy girl. So good to see your name come up but so sad to see the reason for your post.

I remember the chats in Launde last year so clearly. You have done the very best you can for your husband for as long as you are able and now it is time for you to hand over just some of his care to others. Not all of it by any means as you will still be doing a lot of 'caring' when you visit and in consultations when it comes to his health and welfare within the care home. I know you will probably think me a bit hypocritical saying this as I never really accepted Dave being in a nursing home but I did accept that the staff probably coped better than I would have done.

As regards the permanency of the move, just never say it. I suppose it was easier for me to say that the NH was a convalescent stay until he was stronger as Dave went there after 8 months in hospital but it's worth a try. The word ' soon' can bring hope though I did feel so sad having to say it knowing that soon would never come.

Don't be alarmed by 2jay's words about the financial assessment. (no offence 2jays!) I know that some SWs can give misleading information but, unless the Financial Assessor is very new, she should know her what she is talking about and the FA's task is only to assess and advise not to make the decisions. I can only speak from my own experience but I found the LA financial assessment fine and the lady lovely and very helpful. She/he will have no right to interest herself in your capital but she will be able to advise you on the best way for you to manage. I only had the married woman' s element of the state pension but she worked out whether I would be better off accepting half of Dave's teacher's pension or foregoing that and applying for Pension Credit. You do know you are entitled to half your husband's private or occupational pension I expect but the FA will tell you anyway.
As it happens I was better off with half of Dave's pension, especially as I had some savings which reduced the amount of Pension credit I would have received. I know someone else on TP opted for the pension credit. Either way, you will receive advice and of course the house is safe. It's not easy managing but it's do-able and practice for what will be an eventual way of life- for me anyway.
However, you are not responsible for paying the care home fees in any way unless there is a cheaper place which is perfectly suited to your husband's needs.

It's a sad and emotional time I know and to have to deal with all the financial stuff at the same time is a nightmare though I hope you're more sensible than I was and aren't having to sort out Deputyship as well!
Just try to take things, practical as well as emotional, one step at a time DG and you will be ok, eventually.
Do PM if you ever want to. Love and understanding . xxx



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[Scarlett123]

Hi Dumpygirl, and my thoughts are with you. When John went into a Care Home, I told him he was going to a very nice hotel, for a little while, as the could look after him better than I could. For the first couple of months he asked when he would be coming home, but that eventually stopped.

It's the toughest decision I've had to make, but we all know when the time is right. xxx

 

[dumpygirl]

Hi Dumpygirl, and my thoughts are with you. When John went into a Care Home, I told him he was going to a very nice hotel, for a little while, as the could look after him better than I could. For the first couple of months he asked when he would be coming home, but that eventually stopped.

It's the toughest decision I've had to make, but we all know when the time is right. xxx

Have just switched on my computer and logged into TP and was delighted to receive so many pieces of useful information, especially from some of you whom I had met at Launde Abbey, Thank you all so much. I have spent the day with one of my daughters labelling Grahame's clothes and feel really tired now but relieved that it is all done and ready to take to the care home tomorrow evening (the night before he goes in). The Welsh Duvet Cover has washed and ironed a treat and I am sure he will love it. Have decided not to use the curtains which were included with the duvet because for one thing they are very very long and for another they are not lined so will stick with the ones which are provided.
My lovely CPN came today to do the cognitive assessment with Grahame but as she said it is just red tape as she knew how he would score. I was relieved that it was someone I knew and felt very relaxed about it with her
I liked Betsie's idea of staying with my daughter for the weekend. She has in fact invited me but I do have my son living with me so I will not be alone. I may decide to stay with her. It all depends how I feel when we leave the home!!!
Once again thank you all so much for responding to my post. I really value your input and will take on board everything that you have said.

 

[pony-mad]

I hope all goes well on Friday. I would imagine there will be a lot of mixed emotions. As you say, the advice that you receive here on TP will be invaluable in the days to come- from people that have walked the road and can hold your hand!! Best wishes G


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[Saffie]

Gosh DG, you are well organised.
I hope Friday won't be as difficult as expected but it will be a very emotional day. I will be thinking of you.

Dave had 2 welsh blankets which he had on his bed and special electronic chair to cover his lap and he loved them.

A good idea to spend Friday night with your daughter as at home the day will be playing on your mind I'm sure.
All best wishes - it will get easier. x

 

[dumpygirl]

Dumpygirl. I really feel for you. This is a situation that everyone finds difficult. I'm glad you have your two daughters standing by you. I'm sure other TP members who have had experience of this will be along soon to share their thoughts and feelings. I imagine it's something that is very hard to contemplate but perhaps, like every other stage in the journey, you will learn to cope.

Have you thought of contacting the Society helpline? I know many people have found this very helpful. Here's the information about it:

http://www.alzheimers.org.uk/helpline

thank you for pointing me towards the alzheimers helpline re benefits. I have read it and printed a copy off. It is very informative and will help a lot.

 

[2jays]

Hoping today isn't/hasn't been too hard for you.

Thinking of you xx


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[Saffie]

Yes, me too, not an easy day.
I remember the day dave moved from hospital to nursing home so vividly but it must be so much worse from home.
Keep strong. It will become a little easier.
Good that you have your son living at home so you won't be alone but it will be very different.
love and empathy. xxx

 

[Izzy]

Hope you're OK DG. x

 

[canary]

When you get home pour yourself a large glass of wine (or whatever your favourite tipple is), sit down and dont worry about anything else.
Maybe have a take away.
You are going to be feeling very emotional, so dont feel that you have to be strong.

 

[Scarlett123]

Hope today went smoothly for you all xxx