This weekend I have to decide whether Keith needs to go into permanent care, all the tools have been put in place (very quickly!) by CHC and the district nurse. She says she is very worried about me and that it's too much for me to cope with!
This is the hardest decision of my life and I just don't know what to do, one minute I'm thinking I can cope and then something awful happens and I'm back to I can't do this any more! I had to use the standing hoist on my own last night, Keith had gone to bed early as he was very tired and after two hours wanted to get up again as he'd had an accident in his pants. Don't ask how I did it, I really don't know, but I managed to get him standing and clean.
I'm thinking that I need to have a family get together and discuss it with our children, the two boys have already accepted that this is inevitable, I daren't even mention it to Emma, she's struggling to cope with her Dads illness as all of them are, this is just so horrible, I feel sick all the time, can't stop crying and can't sleep properly!
What on this earth am I to do?
Pat....xx
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Oh, Pat, I've been worried about you, too. If the place is a good one, just think how lovely it will be when all your time with Keith is good time, not a lonely struggle, but happy visits. He will be safe and clean and fed, you will be rested and in less physical pain yourself. Not to minimize the grief of the decision, but why put it off until you have done yourself irreparable harm? Sometimes being protective of yourself is the wisest and, in the long run, most generous course. Love, ec
Thanks ec, CHC have agreed to him going to the place he went for respite, it's just over the road from us and is really lovely and the staff are so kind. I've fought for all this help and now it's here it's so hard for me to accept!
Thanks for your concern it's really appreciated....
Aww Pat, what a awful decision to have to make and soooo very heartbreaking!! However airing on the sensible side, you have to think of your own welfare and health and state of mind as well as Keith's wellbeing and safety! Unfortunately I think a home may be the best decision but obviously only you and your children can make this decision! I'm sending you lots of love strength and hugs at this most distressing time!! X
Sounds inevitable, Pat, but that doesn't make it easier.
Hope your children support you so you can let things move on without guilt. You have struggled valiantly and need to rest so you can spend quality time with Keith.
Pat, I just wrote a tome and pressed cancel instead of Submit...so here goes maybe this time I can be more succinct!
I so know what you are going through, Pat...I too am facing change in our lives...I spent yesterday crying. Today I have a more positive attitude and I am ready (?) to embrace the new normal...ready but not easy....But my husband voiced his desires and I am thankful for that!
Pat your husband voiced his desires! So Praise God and drop the guilt!!.....like ec said don't put this off till you have done irreparable damage to your own body , and then you HAVE to make that decision. It's a place that both you and your husband know and like . at the end of the day you will know he is safe and comfortable...Your kids will know that both of their parents are safe and comfortable....It's a hard decision .Your love for him will not be lost because of a few km's ....Take a deep breath ...like one other said here , You KNOW what to do....and so does Keith!
Love you sending big hugs of support
AVB
ps...believe it or not this was more succinct! LOL
Dear Pat, I really feel for you, as you know, I am only a step behind you. So I can't give any advise. I know it's only going to be weeks, if not days, before I will be in exactly the same place. Just had another weeks respite, S comes home tomorrow. I am starting to dread it, as I know I can't cope any longer.
I suppose, like we have done through out this journey, we have to put our loved ones best interest into the equation. Where will he be the safest? who will be able to provide the best complex care that he needs? We both know the answer to both questions! Certainly it's not me. But how can I put the love of my life into a care home. I am still working on the premise, rightly or wrongly, while its still a hard decision, I am not ready. But as each day goes past, the thought is starting the gather momentum.
Can you not have a lot more respite, say every two to three weeks? Or have things progressed too far for that to work? That's the route I am working on, they have increased my breaks to every six weeks now, although I only lasted three weeks, before he had to go in this week.
Please try and get your children involved to help relieve some of the pressure on you. It might even help your daughter, as I suspect a lot of her problem is she just doesn't know how to help you. With her Dad in a home, there will be nothing for her to do, therefore it will ease the guilt. I have the same problem with S's son.
You're right this is the hardest decision we will ever have to make, but it's one that we have no choice in, PSP has already decided and taken over.
Sending you a huge hug across the ether, know all of our shoulders are only a click away
I'm like you, I've been thinking about it for the last few weeks, it's slowly built up to the point of no return now, I just can't go on any longer! Keith's well being and my sanity are completely on the edge of meltdown now, I have to make this decision I know, I'm going to have a heart to heart with our family this weekend, thanks for your hug and you shoulder!
You always make such sensible comments and its all so true.Think we are getting to that stage before long but guilt invades ones mind.Hubby back tomorrow after a weeks respitebut i cant wait another 12 weeksfor it,going to aim for 6 weeks in between.xxx
Yes, reframing the discussion would be key to developing positive attitudes going forward. And we all need that! None of us is free of this, well or ill, we are all getting older and most will need help! Love, ec
You are right EC. We all need to change our attitudes to old age and dying. In the UK, we are treated like we are a burden on society, we are not allowed to get ill, claim our pensions, use the hospital and as for dying, well that's just plain rude. For goodness sake, it's the only thing in life that you can guarantee, yet the subject is strictly forbidden!
Dear Pat, I have recently had to make that decision as you know, and yes, the hardest most painful thing I have ever done, but like Keith, hubby knew it had to be and agreed to it. It still breaks my heart to leave him there, I spend lots of time every day with him, usually tuck him up in bed but I cry every time I leave but I can see that the decision was the right one because he is deteriorating fast and I feel so glad that I am not doing the nursing side as I remember too well the grief we went through every hour of every day, now, we spend special time together, I take him out to the park most days and weekends he comes to spend time at my daughters home and I am myself again and stronger.
The home is lovely and a few minutes by car away which means I can pop in anytime as you will too.
I'm thinking of you and just know it really has to be. Sending love and hugs xx
Yes I know how upsetting it was for you, I could tell at our last catchup, I never realised though how difficult a decision it was until I've been put in the same situation myself!
Events last night have made me realise I am not strong enough to deal with both the emotional and physical side of PSP, all I want is for it to go away but that's never going to happen I know that now.
I've spoken to both my sons and my daughter this afternoon, I think they realise now what this illness is doing to me as well as their Dad!
We must meet up soon Shirley, I need a shoulder 😔....xx
Dear Pat, I know this is such a hard decision to have to make. Believe me that I know, as I had to make the same decision at the beginning of August. It is made particularly hard by all the negative publicity there is about residential care. Because of that, we are all imbued with a sense of guilt and an overwhelming feeling of failure that we haven't been able to 'cope' and look after our loved one until the end. I am sure you are probably like me and fully expected, in my naivety, at the beginning of this journey that I would be able to do that, after all 'how hard can it be.......!' Well we all know how hard it is!
It is unfortunate that residential care has such bad connotations. Some places are really excellent. We have been lucky and D went in to a lovely nursing home about 10 minutes drive from us about 6 weeks ago. Everyone there has been so kind, both to him and to me, and they have all made so much effort to understand the condition and how to look after him. Many of the replies you have had have emphasised how important it is to look after yourself and, of course, that is important but I can honestly say that I think D is better looked after at the nursing home than he was at home. He is not left alone unless he wants to be and there is always something going on and the sound of voices. The carers and nurses are cheerful and often make him laugh. He has enjoyed sitting outside in the sun almost every day since he has been there. There are always two carers available to hoist him from bed to chair or take him outside whenever he fancies it instead of him having to wait for visiting carers to come as he was having to do at home.
I would also say that it is not as though you are going to 'put him in the home' and abandon him there. If it is just across the road from you, I'm sure you will be visiting all the time. I spend most of the day with D but come home for the evening and an unbroken night. It makes all the difference getting a good night's sleep. It is still hard work spending a lot of time with someone who cannot communicate with you and my time is certainly not my own, BUT the responsibility is shared and the bottom line is that there is always someone there for him if I cannot be for any reason.
This week has been particularly hard as it is obvious that D is reaching the end of his life now. I am very sad but also very grateful for the support we are getting from the nursing home. Like you, our three children were not unanimously in favour of it, but even the one who was not keen can now see how impossible it would have been to give him the care he is getting now at home.
I have been meaning to post about how we are getting on since going for the residential care option, but have felt unable to do so recently but your post Pat made me determined to try to put something down. Please don't worry and above all don't feel guilty. It will be better for Keith and you can go back to being a wife and companion, leaving the horrid bits to someone else!
Sorry this is such an epic - I've made up for the last six weeks of not posting all in one go!!
Thank you for your wise words Vicki, all of what you said makes sense to me, I just need to make it real in my situation, easier said than done though!
The guilt feeling is probably the worse thing to deal with isn't it? I feel as though I am letting him down and abandoning him when in actual fact I'm trying to look after his best interests and mine too.
I'll keep posting to let everyone know the outcome, thanks for your support!
Pat I know you already know what you have to do, it is hard work, and you have been at breaking point quite a few times over the last 6 months, if the nursing home is over the road, you can visit whenever you want, so the best of both worlds. I was going to say what about a living career? George has also been hard work lately, but we have a live in career, not sure if CHC will let us keep her, but the career company saw how I was struggling and suggested a live in career, doing away with the double ups, and the waking nights, I am still tired but it is much better, knowing I can go shopping and not have to wait to get one of the children in, and I get respite, and the career has two hours break a day, don't get me wrong I am still struggling with PSP but some how things are a bit easier, just praying CHC will let me carry on with living career. I don't have to ask them for respite, because I have the living career, and the children help out if I want to go away. Just a thought pat? Sending you a massive hug. Yvonne xxxxxxx
Just do it Pat. We were in same position 2 months ago and all has worked out much better than expected. She is well cared for and happy there and I am more or less back to my normal self. Also liking a good night's sleep and a lie in. Peter.
Pat I think you know what the right decision is? You have to do what you think is right. I just wrote a really long post and it has disappeared. You have had a hard time over the last 6 months, you have been at breaking point so many times, you need to look after yourself, and the care home is over the road, so you have the best of both worlds. Also what about a live in career? We have a live in career, not sure if CHC will let us keep her, the care company saw how I was struggling, and they came up with a live in career, doing away with the double ups the live in career is the double up, we also done away with waking night sits. If George is agitated up in the night, I will get up with him, and sleep in the morning, while live in career takes care of George, it works very well, I am still very tired but it is easier. I don't have to ask CHC for respite, because I have a live in Career, if I go away the children step in, the live in career has a 2 hour break a day, which also works for me, at least I can go out and not be stuck in all day. Yvonne xxxxx
Do what is best for you Pat. As the home is so close to you, you will be able to visit often. It's a very hard decision to make but it sounds as if you are ready to make the decision and the time is right. If your daughter doesn't agree, suggest she looks after him while you have respite. A similar situation happened with my son's in laws. One sibling disagreed with the decision and said she would take mum instead of sending her away. She did but it lasted weeks before she couldn't cope any more and couldn't wait for another care home place to be found. Only you know what it is like caring full time. Don't feel guilty (easier said than done I know) but know that you have done your very best for Keith and are thinking of his and your well being.
After reading all the replies to my post I think I'm beginning to realise that it's for the best, both for Keith and myself. At the very least I've managed to secure a place in a lovely newly built care home just over the road from us, I'll be able to spend a lot of time with him like I did when he was there for respite.
I wish I was as strong as you are NannaB but I don't think I ever will be although I have tried my hardest!
Believe me Pat, I also have my "I can't do this anymore" moments but so far they have passed very quickly. There is nothing to say in the future that they won't pass though. Colin asked me to promise to keep him at home. I've promised him I will keep him at home for as long as I am physically and mentally able to but I also said if I ever get to the stage when it would be better for him if someone else did the caring, that would be the time I would have to consider residential care. Of course I hope it will never come to that but if it does I hope we find somewhere as close as you will be to Keith.
I can't talk because I can't even put my wife into respite but having seen your posts over the last few months it seems to me that it is time to put your health and well being first .
You are going to feel all sorts of emotions: guilt, loss, loneliness, tired, weepiness. Well I did when I reached the same stage with M at Easter this year. My sons, M's sister and mother did not help by saying I should have done it earlier but they were and are all supportive.
I assuaged the guilt by going in to see her twice daily, a couple of hours or four in midday to feed her (she has a PEG) and take her for a walk on the prom or for a drive if raining. I also go for a half hour or hour at 7pm to settle her for the night. The routine can vary slightly if I tell her a number of times. I am taking my first break (going to see brother and sister in London and Surrey this week) I feel guilt but need the break.
The nursing home staff are happy for me to come any time and do as much or as little as I want other than actual mobilisation or toileting. They are also ones who told me to get some break. They also will need your input about what Keith wants and needs as they are learning about him and the dreaded PSP. they also said that regular visits at about the same time helps patients with neurological conditions settle.
Pat you must accept that you have not failed and that this is just another stage on the PSP road.
Thank you Tim that means a lot to me, I felt your sadness too when M went to the nursing home, I've never ever experienced anything so hard as this, all I can do is cry, I'm a wreck! 😥 xx
You will be a wreck for a few days it is like bereavement it is natural but the more you do with Kieth in the home will help as well as giving you time to rest and then rebuild your own life.
Best wishes it does good to weep let it out breath and start again. Tim
This was me - a year ago - I also described it as the most difficult decision of my life. It was definitely the hardest thing I have ever had to do, but I know it was the right one.
I cried for 2 weeks after P was admitted to the nursing home and anyone who knows me would tell you that they have never seen me cry ! Anyhow, a year on and I visit P every day (my choice) and he is well cared for, safe and settled (although very occasionally he will ask to come home with me !) All his needs are met with care and without fuss, so he is calm and unstressed. We have the `quality time` that the GP and Community Matron promised so our relationship has improved since the stressful days of me trying to do it all myself.
It is not what we would have chosen or how we expected our lives to be, but we have to deal with the situation we are given. My heart goes out to you but be strong now for both of you.
This site and all the lovely people on it are a tower of strength to me, especially now, I know it's the sensible thing to do and every time something happens (which is quite often!) I convince myself it's for the best but then the guilt creeps up on me and I only have to look at Keith and I start crying!
Thanks for your kind words NanBabs, they've helped me a lot....xx
When you love someone who is dependent on you It makes for very hard decisions. I think it will be much easier for him to adjust to the care home with you by his side and able to visit frequently. If you became ill and hospitalised he would have to go suddenly without you being there to help with the transition. We all know and I think you do too that your decision will be the right one. I also struggle with a similar one. My husband would have to go 100 kilometers from here and I am not always able to drive. I may have to move closer once I know where he will be placed. That is holding me back. The uncertainty of where he will be placed. I should follow my own advice. Hugs
Pat, last night I sent you a post but it seems to have vanished! I noticed you had that problem too. I know what you are going through as my husband is in a Care Home but it was only meant to be for respite...at the beginning of September. I don't know what on earth to do. I want him home but don't know if I can cope.
Like you my son has been supportive of whatever I decide but my daughter thinks I am doing it for me! She seems to think I can have a good time then. It makes me want to keep and I do every day. I wish she could understand just a little.
What a life for us all? You are damned if you do and damned if you don't? I know how you feel as I feel I have abandoned him. Bloody stupid in my saner moments, as I won't be any good if I hurt myself? It's the other moments that get to you though?
Take care of yourself and cry when you want to Pat.
Thank you Marie, your kind words mean a lot to me, it's awful isn't it, to suddenly be on your own and feeling like you want to bring them back home all the time! I hate leaving him, I feel so sad for us all....
Yes it is awful and made harder by family. On Sunday he asked me what had I done for my /our Anniversary. I told him it wasn't until this Wednesday 19th and he sobbed his heart out. He thought I hadn't gone to see him! Think he thought it was last Thursday or Friday? He is getting so confused I just don't know what to do anymore.
I cry all the time! It's so lonely without him. I don't drive and have to get a lift every time I go to see him. He is about 30 mins drive away on a good traffic day. I asked him if he would come closer to home but he said not. He just wants to come home.
My heart goes out to you. I am just getting used to the 'new normal' as my wife was diagnosed a few months ago. It's not easy, but it has been nothing compared to what so many of you have been through. Fortunately you are all indirectly coaching me on what lies ahead, and how to deal with it with grace, dignity and practicality. The advice I have been getting is nothing short of brilliant, and I am very grateful for it. So listen to the folks on here: Trust me as a man...your husband doesn't want you to hurt yourself physically, trying to take care of him. But he does want to spend quality time with you. Put him in the hands of the carers at the home and spend as much quality time with him as you can. The home is nearby, so there should be no issues with the family visiting, and you will have more energy and less stress than you have now. He has given you his opinion. Take it.
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