We put my hubby into a care facility today. He was teary eyed going to bed at home last night knowing it's possibly his last night ever spent here. I too had a big cry before I went to sleep. I know it's better for both of us. It was hard to admitt to myself that I cannot provide the care he needs. I felt bad taking him in there in the shape he is in... black and blue hips, legs, arm and hands. His one elbow has several sutures in it (hit it on the counter on the way to the floor). I don't know where all the marks came from, but many of them were falls when I was here, so who knows what happened when he was alone. I completely understand that he woud prefer to be home, I likely would too. I don't actually feel guilty as I thought I may, but that could still come. I just feel sooo sad. This disease just takes and takes and takes. It takes from it's victims, their families, and caregivers. I have heard good things about this facility, it's only temporary (30 km or 35km away) until they can place him in the continuing care in our town. My heart feels heavy, and I'm sure his does too. It's been a hard day, I'm sure there will be more!
joan
Written by
laroux
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Hello Joan I've sat quite some time wondering what to write that might lighten your sadness and realise that nothing I say can really help but please know that someone out there shares your despair with this wretched disease. If there is any comfort to be gained from your husband's move to a care facility it is that it could ease his physical pain through fewer falls, but it's small compensation for the loss of a loved ones company.
Take good care of yourself and I hope your husband's move to your home town happens soon. Kind regards from a former carer.
hi laroux im very sorry about your dilemma mate but do not feel to sad mate because your hubby would understand im sure even if he was a bit teary eyed that's to be expected its not a nice situation for either one of you but someone has to make the decisions now and it looks looks you have you have it. I know its not an easy road but you must stay strong for both your sakes I am sure he well and truly understands the situation that you find yourself in
dear joan please do not feel sad about the situation you find yourself in mate im sure your husband would understand just by the amount of bruising he has on hes body he will know \
that its not possible for him to stay at home mate he probably is aware its to hard for you to get him up anymore without injuring yourself anyway mate do not blame yourself now or later on he will be in the best place for hes health and safety my heart goes out to you all the best take care and no looking back peter jones queensland Australia psp sufferer
I went through this with my husband in mid-September when I put him in a private care home because I could no longer provide him good care. We both cried when the day came, and at first he refused to go. We talked again and again about the need for this move and he reluctantly got up (with help) and let us take him. Everyday for several weeks he asked me to take him home. It broke my heart over and over again. But slowly he got used to the new place and grew to love his caretaker, Barney. Now I think he would be reluctant to come home. He is safe and secure and so well-cared for. I think I was being so selfish in retrospect to want to keep him where he was in constant danger from falls and from my inability to keep his medicines (not for the PSP) straight. Now we see that he is in the best place for him. Try to look at it this way. Perhaps it will work to make you both feel better.
Carolinesimmons im so glad i read your post .im in the same position right now with my hubby although they first thought it might have been psp they dx him with lewybody dementia with parkinsons ooohh such a terrible disease whe i resesearched it and now lived with it for 3yrs .violent outburst blames me for every thing says its me making him ill . Well because i cant look after him to my best standards now as im ill myself he has been put in interim care for assessment on his mental capacity to which ive been told he probably will stay there .ive been crying every day and like you he keeps wanting to come home but he keeps saying ive always wanted him in the nuthouse to which i replied if you keep saying that i wont come and see you .then he gets very apologetic and says he wont but it really hurts he likes it there and the govener he said gets well looked after food wise tablet wise and all the care he needs yet i feel so guilty i cant eat properly sleep properly all i want to do is talk about him to MY family i think they may get fed up with me really . So thankyou for your post its encouraged me to think differently as i feel now i was being selfish trying to keep him with me but now hes got more aggressive i know (i hope ) im doing the right thing so thankyou gillian
You are in my prayers tonight. May you be assured even in the sadness that this move will help you be a better caregiver for him in the coming days.
I know what you are going through and it was exactly the same when I had to do the same for mum as I was exhausted and she too was black and Blue from trying to manage the commode in the night. I couldn't be in her room all night as well and she did need the safety of someone there 24/7. She knew that I wasn't abandoning her and I was still with her every day even though she went through a confused phase of wanting to get the front door and let me in when I wasn't actually there. Her progression was so fast it was only a matter of time before she got used to it and when she went through a night wakeful patch there was always someone happy to give her a shower or cup of tea at 3am and whatever she wished. So just remember that there are some good things about it as well as your peace of mind. It's not easy. Just make the most of what does work for you both. Take care. X Dianne x
Dear Joan. I am thinking of you. There really is so little one can say to give comfort but please know that SO many people will be understanding how you feel. I wish you all the best and you will be able to care even better when YOU are rested
I too was so sad to read your post about your husband. We had to do the same thing in 2012 with my dad who had PSP. I just wanted you to know that someone out there knows how you feel and understands all the mixed emotions that come with making a decision such as the one you have had to make. My thoughts are with you and I agree wholeheartedly that PSP takes and takes and takes, it is beyond cruel. I truly hope your husband receives the excellent care he deserves. We made it our mission to ensure my dad did and I have no doubt from what you have said about caring for your husband you will do the same.
Hi Joan. I totally understand and feel your emotions. The day we put Gerry into the home was a Friday and they have Happy Hour and Entertainment every Friday. I couldn't stop crying while everyone was clapping and singing along. Play that forward to today and I love Fridays at the care home and often sing with the Entertainment now. I so hope you have a good transition and get your hubby situated. I had not lived by myself since I was young with roommates and I found it quite unsettling in the beginning. I have since settled in and it's not so bad now. Be strong and accept the support around you. I'm sure you will be happy with the care and assurance that he is safe from those dreadful falls. We are all behind you and wish you both the best ahead.
Dear Joan. I don't often reply to posts on this site but your story jumped out at me as I know exactly how you feel. I had to make a similar decision in July last year as I was finding it so difficult to cope with my lovely hubby as well as battling with chemotherapy for my lung cancer. It is an awful feeling knowing that you won't be under the same roof each night, but I'm sure given time, you will find it is totally the right decision for you both. My hubby has now settled well and seems to have accepted the situation. The nursing home can provide him with a very high standard of care which at the moment (or for the foreseeable future) I am unable to do. As we all know PSP strips sufferers of lots of their emotions, but your love for each other will, I'm sure, always be there. Good luck and I hope you will soon come to realise that you have made the right decision.
Its so nice to see you back on this site, but I was saddened to hear your news about your health as well as your hubby. Life does seem to have away of kicking when you are down and then kicking you again.
It must be some relief knowing your husband is being well cared for in the nursing home, but PSP does rob everyone in the family and at a time when you too could do with a lot of support, which I hope you are receiving.
Dear Joan, I to had to put my dad in a nursing home as it was unsafe for him to be left home alone. It tore my heart out the day we took him there. He cried, I cried and my husband cried. I felt guilty and dad also put the guilt trip on me aswell. It took at least three months for him to settle in and he now understands that I did it for him. He has declined in the last few months so im not sure how much longer he has but I know hes well cared for, better than I could have done and I feel at ease knowing he has someone there 24/7. PSP is a cruel disease that keeps on taking and taking but know that you are doing the best you can and have made the right choice for your hubby.
Hello, do not feel guilty. I had to do the same thing with my mom one year ago. 2013 was very stressful because of the change of her routine in her home, the loss of seeing her friends every day, and adjusting to a new environment. But it was the right thing to do for her care needs. Although it made us sad, we knew it was the right decision. You will get through this.
I feel for you reading your journey. Just remember one thing-you did the very best you could for as long as you could and that is all that you could have done. Sending love and light to you xxx
My relative in care too . I know the anguish you feel but he has not had one fall since he has been in Nursing Home and was constantly falling at home. (10 months now). It is so hard to adjust but although he has retained his house he says he feels safer in the Nursing Home and they are doing everything to make his life as comfortable as they can and I visit as much and whatever time I like and am made welcome. It is such an overwhelming disease . We are all doing the best we can . Lots of love and stay strong .Pollyannajo
I too went through exactly what you are--- it is horrible-- that was three years ago. At first I felt such guilt because as time went on I felt such a relief that the responsibility of being his sole caregiver was lifted. I started sleeping better and could resume some of my life as normal. I could enjoy my adult children and grandchildren without being torn away to care for my mate. For all these reasons and many more, I felt I was being selfish and not responding as I should. Over the years I realize now that this was the right thing to do. As his condition worsen I have been there for him everyday to give quality time and support, being better rested and feeling the support of a staff who genuinely care for him and me! It has been God sent!! Our relationship has grown closer because I can give him the love and support he needs emotionally, spiritually etc. I think I was so concerned about his physical needs that I was spent when he was home even though I felt we were doing just fine. (He needed round the clock care)
I know that living in a facility is never as good as being home but we both realized that this was the best for him and he consented and accepted it so well. This disease is not kind. I'm finding that I have had to make decisions I never thought I could and I'm not finished!
I feel for you making this big decision. Give yourself time to adjust to the new arrangement. A facility really close to your home is ideal. In my case I can be there in 7 minutes. Hopefully you have found a good and caring place. Friends and family make such a difference in helping to visit and keeping your loved one "in the loop" sort of speak.
I wish every success in your journey -- just know you are not alone.
I can only imagine what you must be feeling. When my husband goes into respite care every couple of months, I feel very guilty and lonely as I drive away from the nursing home. These emotions occur, even though I know he is only away for a week.
I have heard others say, that after being a full time carer one of the things that happens is you are able to be a wife again and have better quality time together. I can see how this can happen, some nights when I am exhausted at the end of the day from caring I feel it quite hard to be a loving wife. I just so hate this condition and how the two of us have been robbed of time together in early retirement.
I hope your husband settles to his new care and you get him a permanent place close to home soon.
Those of us who have had to make the decision know just how you feel and I hope it will not be long before you are able to accept that your hubby is in a good place - hopefully soon nearer to you. We were lucky in that Tony had been going for respite one day a week to the Care Home, so he felt he was among friends already.
Look forward to the day you feel more rested yourself and never, ever feel "guilty" - you did what you could at the time. You'll find new ideas to cheer him up and if you can help with things like feeding, you will still feel "useful" in the old way. You will still be part of the team looking after your hubby.
My thoughts are with you. My mother went into a nursing home September 2013. My brother had been nursing her at home but she was waking every couple of hours and he had no outside help other me two afternoons per week. Like you I didn't feel as guilty as I thought I might as I know in my heart it was the right thing to do. It took a while for things to settle but when you visit you will be able to enjoy your time together rather than fretting about the next fall or the many other needs this awful disease creates. Chrissie
Joan, Count yourself as one of our heroes. He will be better off in the facility although it is traumatic at the moment it happens. This PSP is merciless on us all. There is no giving within it's path. I don't fear death and in the early days of PSP I told my wife "If I could remove PSP from you and put it on me, I would". I meant every word of that. My wife is starting to slip this past week and I can't even tell her sons verbally what is going on. I have to email them. Too many tears come if I try to discuss the situation. You are doing what you think best and that is all we can do with this terrible disease. Hang in there, visit him often, be sure friends drop by often for you both.
A caregiver I met said the following which I find helpful. She said "You should only feel guilty if you do something to someone on purpose to hurt them". There are little bumps along the caregiver road and we must not feel guilty for how we handle or react to them as long as we aren't doing it to deliberately hurt the person.
I know how difficult it is and my heart goes out to you.We placed my mother in law in a care home in September 2013 she went into restbite care for a week while we were on holiday as my father in law needed a rest.I knew in my heart that when we came back she would have hurt herself through a fall and probably would not come home.She fractured her pelvis and when we came to take her home had other complications.She was then placed in further rest bite care we found a good care home and transfered her.Should we blame ourselves for going on holiday? I have asked myself this question many times in the last few months.We were struggling to meet her care needs then.We visit daily between my father in law husband and myself often twice daily.I know she is well cared for and her needs are being met.We try to take her out weekly depending on her condition and the UK weather I know it would be unrealistic to care for her now but I wish we were today she asked me when she will get better? What do you say to that I think she's in final stages sleeping 18 hours a day she's lost a lot of weight can not speak clearly has major mood swings puts herself on the floor daily refuses to take medication is often incontinent has to be fed so sad.We just keep smiling in front of her and encouraging her while crying as we leave her.Sorry if this sounds sad but we have great memories of how she was and focus on them when were with her.You must enjoy as much quality time together as you can.
Dear Joan, We had to put my husband into a home in November after 10 days in hospital with aspiration pneu monia. He is only 59 and has psp since 2007. He has had 3 chest infections since going into the care facility but manages to fight back. I am overwhelmed with guilt at times but know deep down its for the best. I visit him almost every day and feel bad when I miss a day. Im sure that it will take a fair amount of time for the guilty feelings to lessen. In the meantime I have our four older children to care for knowing their Dad is in safe hands. All the best, Cassie. X
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