PSP Association
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What to do?

After being in hospital,- Palliative Care for weeks, B is now in a wonderful nursing home. Twice, he has struggled to keep going, once, my son and I stayed overnight, as we thought he would not survive until the morning. The care and nursing that he received pulled B. through.

He did want to come home at first and probably still does, but we know that at home , there is no way that he will get the instant response to his needs that he gets in the home. The nurses are mainly trained by our local Hospice. The doctor whose practice the home uses, is an expert in palliative care and used to work at the Hospice. I spend hours each day with my husband and he has a lot of visitors. More, I feel, than he would get at home, as people can pop in to the home because it is nearer to the centre of townsite.

If I bring B. home and we cannot get such high quality care, I may not be able to get him back into the nursing home.

Its a nightmare. I feel guilty, thinking I cannot carry on as I was before, because of my own physical problems and the fact that it is not easy to get good quality caring and nursing at home.

The Home that B. is in is superb. His pain and many needs are managed well. The staff are friendly and caring.

My only worry is , am I doing the right thing keeping him there instead of him being at home, when we do not know how long he has left?

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For what my opinion is worth, you shouldn't feel guilty at all. You found him a place with excellent care, where people can visit and where you can concentrate on loving him, without wearing yourself to bits managing his physical needs. It sounds wonderful to me, ideal. However, there is a question only you can answer: do you attach absolute value to his dying at home?

I wish I could say something that would help you make your decision without the guilty feelings. Have you discussed this with the hospice service? They might be able to provide a good perspective. Ours provided a counselor for me, too. It can help to work this through with someone who has seen all this before and understands what you are going through.

Whatever you decide, you mustn't let this be something that burdens you ever after. Whatever you decide will be the best decision you could make.

Hugs to you, Robbo. I do know how hard this is.

Love, Sarah

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Thank you Sarah. I think I will talk it over with someone, that's a good idea.

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Good words , ec!

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Robbo please don't feel guilty. You are not well yourself, and you are not superwoman. I agree with what Sarah has said. However at the end if the day it has to be your decision.

I felt guilty that G died in hospital but I have to say the care was not good. Had he been in a Nursing Home with the expertise B is receiving I would have been very much happier.

Do as Sarah says and talk to your doctor or Hospice. Be aware however we all feel guilty in the end. We feel guilty because we can't turn things around and make our loved ones well again. We just have to learn to forgive ourselves and realise we did our best.

It seems to me that you have got B into an excellent Nursing Home with very good staff, and you are able to be with him as are your family and friends. You also have a doctor who knows what he is doing? Now that sounds like a place most of us would want to end our days.

Big hugs to you and be kinder to yourself. You have done amazingly well. Love to you and to B and family.

Marie x

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You have made a wise choice, you are not well, so at least he is in a marvellous nursing home, you can visit whenever you like. Sending you a big hug . Yvonne xxxx

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Thank you Yvonne. X

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Thank you Marie, common sense tells me that he is in the best place, but he has always said, even after returning from a good holiday, "East, West, home is best". The other day he managed to convey to my daughter, his fear that he was not going to leave the home.

He is at present on a permanent low dose antibiotic to try to prevent the recurring pneumonia that almost killed him the other weekend, when my son and I spent the night with him fearing that he wouldn't make the dawn.

I also fear that by moving him, the disruption to all that the Home has put into place for his health and comfort could be detrimental to his condition.

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That is the crux of it. Would he want to be at home even if it shortens his life? Could you bear it if that were to happen? Or is a longer life in the nursing home better? If you take him home, can you get help from hospice that will keep him comfortable and prevent you from being worn down further? What sort of story will you be telling yourself later? You need to know you did your best. Either way you go, it will surely, I mean it, *surely* be true, but it is how you feel that will ultimately matter.

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so true Marie!!!

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Boy howdy that is such a hard question.But I feel you have already answered it.

You are doing the right thing allowing his needs to be met by a facility who is able to meet those needs. As painful as it is; as distant and even as guilty as it feels; you are being a good wife and making the right decision. It's not what you want to do! you want him home making plans for the new year...but alas here is the plan; helping him be as safe and comfortable as he can be.

One lady on this site recently had to make the same decision and she was grateful as she could now spend time being a wife and friend and not just a nurse. She could read to him and not fear him falling or choking . She worked very hard to be what her husband needed and when his needs could no longer be met by her at home, she allowed the facility to meet them and she "became his wife again" I believe was what she said. That just takes so much strength and self reassurance.

So may I just reassure you , you are doing the right thing for your man. Enjoy him; continue to make memories by welcoming visitors and discovering things that they knew about B, that maybe ...you did not ;) haaha! And most importantly during this time, take care of yourself . No worrying if you did the right thing, you did, . No losing sleep, eat well, drink water, smile, do the things that make you happy knowing that he is safe and comfortable.....

((with many hugs))

Andrea

"So do not worry about tomorrow; for tomorrow will care for itself. Each day has enough trouble of its own. Matthew 6:34

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Thank you for the wise words Andrea.X

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It sounds that you have made the best choice.The home sounds great. I think you know best. You have made the best choice for your circumstances. Try not to second guess your choice. Every one is where they are meant to be. Just relax and play the role of being his wife. This will serve both of you best. Prayers for peace.

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Bless you Novella, thank you. X

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Sorry, Noella.x

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Aww Robbo the million dollar question!!!!!

My view is this, if the nursing home is excellent and the care is second to none then stick with it!! You HAVE to consider your own health needs!!!

I understand the guilt completely!!

As you also say B receives more visitors at the home.

Also his care needs can be met in an instant in the nursing home this is impossible at home.

Hope this helps.....

The guilt won’t go though (it is a constant niggle day in day out)! But Psp is a very complex illness for us untrained loved ones to always manage....

X

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Thank you Satt, you are so right. X

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Right at the start of PSP Colin asked me to promise not to put him in a home. He wanted to die in the home we had lived in for over 40 years. I told him I would promise to keep him at home as long as I was physically and mentally able to look after him how he deserved to be looked after but could not promise if I was unable to do so. When I hurt my back he had to go into a home for a fortnight but I thank God from then on I had good health and his wish to die at home was granted. I know if I wasn’t 100% fit I could not have coped so please don’t feel guilty. If you aren’t able to care for him and can’t get appropriate help in, will he be better where he is? I think most people would rather die with the privacy home brings but sometimes circumstances make this difficult. If you can get the help you need that would be good but if you can’t, carry on as you are and try and relax knowing you are doing the best you can for him.

XxxX

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Thank you NannaB, wise words as usual.

I also worry that if B.came home got another infection or similar, he would be carted off to hospital again as has happened three times in the last year, and then he lays on a trolley bed for 10 or more hours while checks are done and a bed is found for him. He does not want to go into hospital again, neither do I want him to. The Home know this and have what is needed in place, for any eventuality. X

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It sounds as if he is in the right place.

Lots of love

XxxX

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I was prepared, with the support of his doctor, once I brought him home the last time from the hospice care unit a month before he died, not to take him to the hospital for any reason, and not to treat him at all for pneumonia. Sepsis being a terrible way to go, we were trying to treat a urinary tract infection in his last weeks and I'm afraid the awfulness of getting those meds into him triggered his decision to reject food and water. I regret that so much. However, his death was inevitable, and I'm grateful he was able to take charge of it, a last expression of his courageous will.

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Sounds as if you have found a wonderful home for him, that sort of care and training of the staff isn't the norm I'm sure. With B getting such good care will help to take away a lot of the guilt but I'm sure it will never leave you completely, guilt can play havoc and often is totally unnecessary. Enjoy being his wife and let them do the nursing. There is no perfect answer to your dilemma so it has to be your decision but keeping him at such a caring nursing home will make that decision a lot easier. Ben has said he doesn't want to go into a home and has stated on his Advanced Care Plan that he wants to be at home or in a hospice when the end comes, he has also stated no hospital or intravenous treatment to prolong his life. He is now a very poorly man and I am getting anxious about what is in front of us and hope I can keep him at home but never say never.

Love and warmth

Kate xxx

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Kate I’m sorry Ben’s situation is getting worse.

Sending lots of love

XxxX

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xxx

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Sending a big hug, Kate. X

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Absolutely.

I agree with nannsB that I was able to keep Chris at home as I was fully fit. I always knew that if the circumstances changed then it would not be possible.

How lucky to have such a wonderful place. When he is home there is always stress about when to ask the experts - even though I had a 24 hour phone support its not the same as just having a nurse at hand to talk it through with.

Focus on the advantages and remember its not perfect for anyone.

Lots of love from Jean xxx

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Reading your words my thought was that the only person you need to convince is yourself - we all know you’ve made the right choice.

Hoping you have found peace in your decision with the kind words and sage advice from the above posted comments. - it really is the best thing for all.

Virtual hugs to you.

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Thank you Ettavb. I especially needed the hugs! X

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I know just how you feel but when you have found such a perfect care facility for your loved one it’s got to be welcomed with open arms, Horace has been in nursing home for almost a year, he has one to one care 24 hours a day, I visit almost everyday and for the first few months felt guilty just like you said, but then driving home after visiting one evening I realised it was only me being selfish to want him home, his needs were being attended to much better than I could manage at home, I take him out in a wheelchair Taxi and they even let me take a career with us, he has the same three ladies caring for him all the time on a three day rolling rota and we are now all good friends and get on like a house on fire, I even feel now he would miss there company and feel more isolated if back at home, I would not have the energy to take him out daily in his wheelchair if I had e everything else to do for him, so all in all I think we both have the best that we possibly can whilst dealing with this dreaded disease . I have embraced the home and am working together with other residents relatives to raise money for a sensory garden for everyone to enjoy so get involved with your husbands new home it helps you feel so much more a part of it all and also the new friends you make there help with the loneliness felt by letting others take care of your loved one , only you can make the decision but I know I made the right one for both of us we can now have fun when I visit instead of the exhausted feeling I had day in day out when Horace was at home, all my best wishes to you, whatever you decide will be right for you both

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That's all very good to hear, Chrissmitch. Nice to know such a place exists!

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Thank you very much, that is really a good outcome.

Sadly, B. is not well enough to go out, in fact he stayed in bed today. He is constantly fending off pneumonia with the good nursing and the use of antibiotics. He is weak and very tired.

I love the idea of the scented garden, something for me to think about in the future. X

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I had read someone on this site had said it's time to be his wife,that had really stuck with me,you have been the caregiver and done the best you can do,no more guilt,if possible enjoy the time you have with B.

Dee

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There are two things that your husband needs now. One is 24 hour care, the other is his wife holding him and telling him she loves him. The first one, anybody can do. Only YOU can do the second and most important thing. After everything PSP as done to you both, you deserve this very precious time together. Please, please don't waste it, feeling guilty. By B being in a nursing home, you now will have the time to hold him, cuddle him, tell him you love him. That's all he needs now. A very precious gift. Feel proud, not guilty!

Sending big hug and much love

Lots of love

Anne

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Thank you so much Anne. I appreciate your message and your hug!

I learnt today that if he came home B. would be kept comfortable and hopefully pain free, but they would not nebulise him or give chest/back physio . In the Home he gets these plus other nursing needs.

Their physio. has made B some lovely cream with lavender and other healing herbs. I massaged his right hand with it , as it droops, the fingers are curled up tightly, he cannot use it and it gives him pain.

He had six other visitors popping in today, as,well as me and seemed to be a little more cheerful when I left.

I hope you are doing well and managing to keep focused on the happy times that you both had together. Love Rx

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Listen to Anne. What you will think about after he is gone is the intimacy. It will never be enough so make the most of it.

lots of love, Jean xx

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Thank you Jean, I will try to focus on that. X

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Hi Robbo1

I see you have many good replies, but I wanted to wish you both the very best at this horrible time.

Do be kind to yourself.

Warmly

Kevin

xx

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Thank you Kevin .

I think B.is cross with me because he is not at home , although he indicated that he was not. My daughter who lives near, feels that he is annoyed with her too. He will laugh and josh with the carers but not with us.

Unfortunately he had a bad night and was very agitated. Now, he is constantly sleeping. Last time, he slept for three and a half days.

With all the nursing care he gets, they are keeping him going. In hospital, we know from experience, that the staff and care that he gets here, would not be readily available.

If he was at home, he would have had to go into hospital, but here, in the Home, they are experts at Palliative care.

All these good reasons for his being here do not make me feel less guilty however.

How are you Kevin? I am sending my best wishes to you both. X

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Hi Robbo

What you describe about B sounds very similar to Liz.

We're getting by. Liz is determined to move to another home, which I have found is nowhere near as good. So I am playing for time a bit as she will not accept the fact. She hates being in the home, but there is just no way I could care for her at home, even with carers, because her passive aggression toward me is too frequent to cope with. An example of that is that she presses a bell for assistance every ten minutes and if I go put of earshot at all I will come back to find her on the floor, or something. It is very wilful.

Things are much better now she is in a Nursing Home... the guilt is diminishing.

Best

Kevin

x

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