For the past month or so I have been told by both my GP and people worried about me caring alone for my husband, that the time has come for me to seriously consider a care home for him. Although he goes to a daycentre 4 days a week, he is now extremely unstable on his feet and will fall now when using his walker. Due to the fact that there is little he can do now his sleep needs are minimal and he often wants to get up at 3am. He says he sees me as the person who has to look after him and keep him safe, the empathy went about 18 months ago, its the hardest symptom to deal with for me.
I don't have family helping me and my friends live miles away, the people that live in our complex are helpful but all have their own issues. Finally on Sunday the penny dropped that I was not able to keep myself safe here anymore, started doing stupid things and realised I was beyond tired. My husband is not able to do much for himself at home, including getting up from the sofa for any reason. I had a serious medical situation some years ago that has left me with poor stomach muscles and being very slight lifting him is causing me pain. We recently got the ok for him to have a powered wheelchair, great, but how do I get him from that onto the toilet etc, its going to take more than I can do.
I have, very reluctantly, talked to him about his care elsewhere and he surprised me by saying 'I don't want to go, but you can't do this forever.' We have a lovely home just down the road from us and I am visiting later this week before taking him down there. If we can get him into this home I am convinced our relationship will change for the better as he can't possibly see me as only his carer. However I do feel that I have failed him so much, besides lots of you continue to the end, I question what is wrong with me and have been in floods of tears since making the decision. Now thinking I should carry on with him at home for a while longer
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GillJan
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Thank you so much. It's such a hard decision to make and even when made harder to live with. I just hope that people are right that if someone else is doing the care our own relationship could well change for the better. AT least the home is dog friendly and in walking distance. I trust in the end I will make the right decision for hi.
Hi hun the only way i manage these days is with the carers comeing in morning and night oh and of course plenty of equipment.
Without the equipment not even the carers would be able to transfer Brian from chair to toilet etc. We have things like a rotastand (hoist for bad days) rise and recline chair... wheeled comode (fits over the toilet) hospital bed just to name a few things. If you haven't got the equipment it will be hard for you. You need to have an occupational therapists come and see you to see what is available for you.
Have you considered home care. With people comeing in to help with the major work it will be easier for you.
It sounds like it is not you that is failing but you have not been offered the help and support you need so it is the system that is failing you.
Unfortunately it would be difficult to get more equipment into our bathroom. As we live in a retirement village we do have the security of the emergency pullcord system. There is a manager on site weekdays 8-4 buy after that it is usually a 999 call even if pull the alert cord. Because I am having to rely on what social services will pay for and provide there is a limit set for when it is cheaper to go the care home route. Also they are worried that my husband has a lot of frustration that can make him hit out and I have been hurt on three occasions, the last one they wanted to come and remove him as an emergency, but I wanted to continue. I have considered going on a little longer, but not sure I will be doing either of us any favours. I cannot have night help as we only have the one bedroom. Thanks for your advice and thoughts, very much appreciated.
I manage because I have night carers 6 nights a week so I can sleep. I also have a house full of equipment and aids and lots of friends and family ready to help. I'm also reasonably young, 65 and in good help, apart from a dodgy back at times. You can't do this alone and you haven't failed. Are you in touch with a hospice? They provide practical help and advice as well as setting things in motion. Don't go it alone. If it does come to residential care, don't feel too guilty, although I know I would to start with, but start living again and building back the relationship you had with your husband.
Like you NannaB I am youngish at 62 but having suffered cancer at an earlier age I get knock on problems from time to time and lifting is a huge task for me at the best of times.
I do not have family close enough and besides those that perhaps should have shunned the situation. I have fabulous friends all scattered around the country and am blessed with the support they are able to give - mainly in keeping me sane - but it is so obvious it is upsetting to them that they live so far away and not able to be of assistance.
The local hospice, I'm afraid, were of no help whatsoever, he did go there once a week at first (but now at a lovely daycentre, that will have to finish if care becomes the answer) but they didn't know anything or seem interested in looking into the condition of PSP and really only deal with cancer patients. They tried to get him to do activities and complained to me that he was non-responsive. He has an eye condition that causes 25% sight only in his left eye and double vision through the PSP, they were giving him things to do that involved a lot of reading etc and if they had bothered they would know that wasn't the right way. They also told me that they thought I was using the place as respite for me!!!! and that is not what they were for. So naturally I stopped him going there and did my own research finding the wonderful daycentre who are now caring for both my husband and a recently diagnosed patient who goes once a week and lives close by. They understand him and what his limitations are - this isn't going to make going into care easy as he has to hope they will learn about him and he keeps asking me to make sure I don't put him somewhere they are slap happy!!
What a shame the Hospice was so unhelpful. When C started going he could walk in holding my hand but like your husband, couldn't join in any activities. 2 years later he is almost unresponsive but he has reflexology and goes to the little service they hold. I spoke to staff last week and said as he can't do anything, if they need the space for someone who they feel would benefit more, let me know. Their reply was that they would keep him as long as I felt the benefit of him being there for 5 hours. One added, " You need the break". A totally different attitude to the one you spoke to.
I hope you get things sorted soon. You have to look after yourself.
Thanks NannaB. Yes our hospice is so different. You can be referred there by your GP but for a maximum of 8 weeks only if its a terminal condition but not cancer, so what the point is I don't know
My husband was booked in for 12 weeks and then he had 12 weeks off. He was then given another 12 weeks and when he was due to have the next break they said he could carry on going. He has been continuously since 2014. Even 8 weeks would give you a break but I'm sure it wouldn't end there. Ours also gives the carer complementary massages and reflexology as well as counselling. I don't use these services as I'm too busy meeting with friends or going to my art class on Fridays. Take whatever is offered from whoever offers it as you can always say no if it doesn't work out.
Hi Spiralsparkle, jump in as much as you like. I'm in the UK and have been very fortunate to have been granted continual health care for my husband from the NHS. Within days of it being granted, night care was awarded and the CHC arranged it. In the UK there are lots of care companies that employ people to sit at night but if self funded it is expensive. After two and a half years with an average of 3 hours sleep a night, it came just in time.
So pleased you were able to obtain what you so needed with chc & night sits. I'm in UK & just starting journey off of arranging care plan after hospital discharge of Mum. Night sits and CHC have though been more or less said you won't get it already. I've had to request CHC initial checklist assessment as social worker wasn't going to do it. She doesn't think we will get it at the moment and doesn't seem that keen on helping full stop. I do wonder why some of these so called health and care professionals are in the job as seem so cold.
Keep notes of everything your mum does connected to PSP. I scribbled down when and why I had to get up with/ for my husband every night for months. I also did a five bar gate note of all his "nearly falls" where I had saved him and dates of actual falls. Start collecting evidence that will come in useful in the future. If you can still leave your mum for short periods you wouldn't get CHC as the name implies, it's continual, but if you can't it's worth making notes now. Jot down if she does risky things as the safety of the one living with PSP, and the harm they may do to the carer (falling on them etc) is an important part of the assessment. It's much easier to read from notes when bombarded with questions and show them the evidence than try to remember.
Hi not just a night diary, note all chokes, falls, incontenance and moments when you have to help with dropped items etc. Remember to cover all symptoms of PSP and if social services or district nurses ask always refer to the bad days not the good ones. If he falls and cannot get up call the ambulance it provides a log for professionals to consider.
NannaB, I have been doing the same thing with recording everything. In the past 3 weeks my husband has been going down hill in the evenings. He is like a zombie after 7 PM. He will not eat, take his meds., stand to be transferred, etc.... I am about ready to request the hoist from hospice. I have to call neighbors to help me lift him into bed. Did your husband go down hill that quick, or was it granule.
GillJan, I could not take care of my husband if it were not for hospice getting me the help and equipment that I need. I do not think hospice is suppose to treat you like that, even if you live in the UK. They told me the same thing about time limits, but they said they extend the times all the time. We have had their help for about a year now. Can you reach out to another hospice company?
Hi mthteach, my husband does both. In some thing it is a gradual decline like eating but in others it's sudden. Before Christmas he was standing straight and firm using a standing hoist and then the day after Boxing Day his legs gave way and he hadn't been able to put weight on them since. Urine infections can cause sudden dips that can improve once the infection has cleared but if it's a PSP dip, my husband hadn't come back from it.
Failed? No no no!!! If there is a good home nearby, then you will have succeeded in providing for him the care and safety he needs, and are being wise for you both!! I told a social worker that my plan was to keep my guy home until the end, but I saw her eyes flicker. Later I asked what she thought was likely to happen, and she said that everyone goes into it with that intention, but there comes a time for almost everyone when that becomes impossible. You need help, that's for sure, and finding it now, either at home or down the road, is the kindest and wisest and bravest thing you can do. Be gentle to yourself. And don't compare with others to your detriment. Everyone's situation is unique. You are doing your best, and that is enough heroism for anyone. Love and peace and good luck. Easterncedar
Thank you. I am hoping that if we do go for the care now - or when there is a vacancy at a place of his choice that our relationship will become more normal and he will see me as who I am and not just his carer. Down the road is a wonderful home and the back of the manor opens onto a courtyard with views across our local canal and woodland beyond. It is also pet friendly so I can take our Saxon down regularly to see him.
Your post could have been written by me last September. Please listen to all those people who have concerns for you, they also care about your husband and what is best for both of you. I have said before in other posts that the right thing to do is rarely the easiest !
Please think seriously about the future for you both, I listened to the advice I was given and things are better now. I spend "quality time" every day with P now and although the situation is not what either of us would have chosen, it is the reality, here and now and I would say it is the best solution for us.
P has been in a nursing home since late October and has not had a single fall in that time whereas he fell almost daily at home and to say I was running on empty was a huge understatement. We had carers, day care, equipment everywhere at home yet he has been safer in the nursing home.
The guilt has not gone away and maybe never will, but I know I did the sensible thing - the right thing for us. I don`t pretend it was an easy thing to do, I shed buckets of tears - and still do sometimes - but deep down you will know when it is the answer for you too. I really envy those people who say "I`ll never let *** go into care" and manage to keep their loved ones at home until the end, I respect them and we would all love to be able to do that but sometimes we can`t.
Hi GillJan, I'm at a similar stage myself at the moment with my mum.. I too feel like I'm a rubbish carer as after almost two years I feel I can't do it anymore, and I get 6/7 nights cover a week now! If you are in social housing you can apply to move for care need reasons, mum was in a one bed flat when I took over her care and after 3 months she got granted a 2 bed bungalow, sooooo much better! (And I no longer had to sleep on the lounge floor!) you can also get carers virtually 24/7 in the home for your loved one if you go about it the right way, they can't force anyone into a home. That being said as I sadly think that as eastern cedar said that for most a home will be the only option at some point .. So it's whether to do it sooner rather than later.. I'm looking to hand over all of mums care within the home and to go back to being a daughter who cares not a carer that's a daughter. And if Im Honest I can't wait to get some of my own life back although feel terribly guilty that it will be against the wishes of my mum. You know in your heart what you can cope with and when you have to say you've done your best, which you have! And act on those feelings, hopefully that will make you happier and healthier and so you can go back to being a loving supportive wife rather than a worn out frustrated carer. Love and thoughts are with you xx
Oh Gilljan you have been on this site nearly as long as I. You have done and are doing everything you can for your man. Like I said in another post , Don't feel guilty keeping your husband safe, even if it's at another facility. Your husband cannot be safe if YOU have fallen and can't get up. My post is just an echo of what everyone else has said all the equipment in the world isn't going to help unless you can use it! Get some manpower at night and get him in a day facility...or if a nursing home is better equipped....go there! I see my husbands future...I'm scared too...but I'll do what it takes to make him safe and comfortable.....
Thanks, I can't get night care as only a one bed flat. Moved here because we have the emergency pull cords. I have all the equipment, except the wheelchair which is an in-progress thing, that I am allowed. We are not allowed to put in hoists here so lifting is purely by my strength which is zapping fast.
Yikes, without the stomach muscles lifting is hard...I do hope you can take advantage of what others have said on this post.....you might have some alternatives that will help both you and your husband! I make B get up on his knees before helping him up....unfortunately he is forgetting how to do this...so I don't know what I'll do!
Yes my hubby knows if we can get him on his knees its easier to get him up. In the bedroom we try to get him close to the bed to use as a lever, elsewhere I get his walker which helps, but when he falls on his back in tight spaces, such as beside the bed it is almost impossible to get him up now.
Looked at the home just down the road from us, it is a small unit and is totally dog friendly. They have a resident greyhound and I met a gentleman who has as terrier living with him, so I am pleased I can take our Saxon to visit as that is something that would have been very hard for hubby not to have in his life anymore. The home has an old manor type part and a new part that has been added and I was thrilled to see all the activities they do every afternoon. Also they are happy for him to trial the home for a week as respite and am planning that whilst I am going away at the end of June - a friend is insisting I go up to Yorkshire for her to spoil me, bless. During that week they have a band coming in that will do 50/60's music and will be right up hubby's street. Every window looks out on the ground or the canal at the bottom of the land so it really is cheerful. Hubby needs to be assessed by their manger (who was off) so hoping to do that end of next week when we will know more from social services too.
We aren't here in an endurance competition. It would be sad if the fact that others keep their loved one at home meant anyone who didn't is a failure.
You have clearly battled against the odds and , if your heart is telling you to listen to others then do so. Please don't feel guilty. Guilt never helps anyone. It is more important to make the best of where you are now.
How lucky to have a lovely, convenient Home close by.
If you feel stronger you will be able to support your husband. Remember caring changes us as well, and you will be able to be the " you " you were before all this nightmare.
Thanks Jean. Once I made the decision, I became very tearful and emotional and it lasted a good few days, by Thursday this week I was feeling more positive and less tearful. I am finally not beating myself up over the decision I have made. His sitter talked to him yesterday about it all and he said he is ok with the decision, whilst he would love to stay at home, he doesn't want me to continue and end up ill myself and him having to be put wherever there is a bed at the time, this way he can be sure of things and yes the home is literally a 3 minute walk away and from the home we can go out a gate at the bottom of the land onto the canal path for walks with Saxon, so I guess it was meant to be when we found this retirement village. x
Your husband will receive better care, be safer and have a better quality of life in the home - you know it is a good one - with you strong and healthy. By keeping yourself fit and rested, you will have the energy to devote to him right to the end. If you allow yourself to get ill, you will lose control of the situation and put him at risk.
Your poor husband may have many months of struggle ahead of him. He needs you to keep strong, so you can advocate for him, ensure he gets the best possible care and squeeze happiness out of every minute you have together.
Thank you. Yes it does seem that he has deteriorated at quite a rate over the past 4 months. I think the main reason for my doubts and questioning of my decision is that he is only 69 - granted he actually looks 10 years older due to this darn condition, but his rationale and mind are still very good most of the time and I was upset at the thought of him being in a home with people so much older than him. We will go with the respite week in June and hopefully things will be alright and fall into place. At least after a week away I should be more rested and in a more positive place, although I believe I am getting my head together now.
S can look very young for his 71 years, but he looks totally at home with all the other residents, when he was in for respite recently! He was almost the youngest, most are over 80. Not good for making friends,but that's impossible now, anyway!
Is he going into the same home for his respite? If so, I'm sure it will help, when the final move is made, for both of you.
GilJan. Don’t ever ever ever think you have failed in any way. PSP is an absolute b****** of an illness which effects so much more than just those with the illness. We have finally said goodbye to dad after a very quick in deed frighteningly quick decline. If you have any chance whatsoever of help both in the home or in a care home then please please take it up. PSP has a very nasty habit of sneaking up and suddenly everything is in reactive mode rather than planning and preparing for ‘the next step’. From experience the sooner you can get help the better and it really does give you chance to become the partner again and not just the cater. Mum tried to look after dad on her own even near the end and once help was in place now she freely admits it was the best decision she could have made. She too wanted to just keep on for a while longer eve though we could see it was getting almost impossible and we were able to also prevent mum hurling herself physically helping dad. Take everything that is offered and don’t ever ever ever think you have failed in any way
You’re still by his side. That’s how much you love him and how much you’ve achieved in the PSP road together.
Take care of you and let others take the relentless task of caring for your husband.
I reacted to the comment about lack of empathy. I thought that it was just happening to us. It was shocking to me that that was lost in my husband's brain. My spouse too has lost much of his core strength and rising and especially lowering himself into a chair is extremely difficult. I do have adult children who live with us to help but its almost getting beyond that.
So I know what you're going through and am sending you emotional support because don't we all need it!
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