PSP Association
5,302 members7,303 posts

When is it time?

When is it time to place your loved one in a facility? I am thinking he would get better care somewhere else as I am no longer able to gently help him into bed and sometimes have to get a little rough. Is this fair to him and me? He is suffering abusive moves and I am suffering guilt. I am putting him at risk everytime I take him out the door as I am not strong enough to hold him up therefore I don't take him out as much as I should. I don't have the room nor the facilities to make things easier. All I am offering is familiarity. I am not offering safety or comfort. Who is gaining from this?

9 Replies

If he is not safe, if you are not safe, you must consider the alternatives. Do you have a social worker or a facilitator to guide you in this matter? I'm sorry I cannot remember his you use a "swing" to get him into bed and on the toilet? Is he able to communicate ? B does not get out much though we do some things together. but he still uses the walker and "talks" to me; is able to take care of his bathroom needs with help . He is not ready. Your husband may not be able to take care of any of his needs: eating; bathing, toileting, communication, any type of independent movement with or without assistance. Talk to your family, talke to your health care provider....If you have a nursing home in mind, you might ask them their daily objectives for their patients....speech ot , pt etc?

Folliot, I have no answers for you . This is the hardest decision. Do you have many people coming in to help w daily needs? Maybe home bound people coming in and helping you . And don't be too hard on yourself. I am not sure what you mean by abusive moves , but trying to help him is not abusive.

All I can do is to pray for you and leave you with the comfort of a scripture.....

He gives power to the faint; and to them that have not might he increases strength

Isaiah 40:29

Come unto me all ye that labour and are heavy laden, and I will give you rest.

Matthew 11:28

I believe you will find the answers, and they will be good.


1 like

Thank you Abirke. Your response is the same as family, OT, Physio, friends. I do most everything, feeding, toileting, transporting etc. He has limited mobility and can communicate but sometimes either doesn't want to or unable to respond to simple questions. He is unable to move about without transport chair or extreme supervision and direction with a walker. He is very cognitive and understands and can respond with time but sometimes I think just can't be bothered. Needs a lot of prompting. Clings to bars to the point of having to pry from them. He can stand for extended periods with support but unable to bend and sit without a lot of force and prompting, sometimes up to 10 min. other times easily with support and pressure. Sleeps most of the day and all night.

1 like

Hi, you sound very, very tired! Please, when your husband is asleep, so should you be! Have you enough care coming in?

As to the 64,000,000 dollar question? I have no idea. Wouldn't life be grand, if there was a simple answer. I suppose, when you REALLY can't cope anymore. Get the social services involved TODAY, I'm sure, any lacking in help, will materialise, rather than take him into care.

I can relate to your post, S can be exactly the same. I ask a question, he totally ignores me. Never sure if he can't understand, doesn't want to respond, can't be bothered or even occasionally, actually thinks he has! Either way, it's very hard to come to terms with. The physical side I can cope with, just!!! But this non communication is certainly very trying!!! There just doesn't seem to be anything that you can do, to help. The speech therapy is useless and doesn't seem relevant! I know the physcial exercises S does, his speech goes down hill, if he misses a couple of classes. But nobody can suggest anything to help simulate the speech part of the brain.

How I hate this disease!!!!

Sending you lots of love and hugs



When you are burned out, it is definitely time. When you feel as you do, it is time. You will still feel the guilt but your loved one is being cared for by many who will always do their best to help him. Start the contacting now; you can always say no when his name is called but unless you start the assessment now you will have a big delay.


Thanks Gad42. I have already done all that but the last step is going to be the hardest.


Are you in the UK? If so, have you told the social services you need help. Have you considered carers to get your husband undressed and into bed in the evening and out of bed, dressed, showered shaved etc in the morning? The decision to move a loved one to a care home is a very hard decision to make but considerations will be different for everyone. If someone knows they can't cope with caring any longer and have had enough of trying then it is probably better for the loved one to be cared for elsewhere. If they can't cope because they are doing everything themselves, carers or other help may mean the decision can be put off for longer. When my husband could speak he asked me to promise not to ever put him in a home. I told him I can't promise that but I did promise to keep him at home for as long as I possibly can. If I didn't get the help I do and get time off each week to have a bit of fun, I know that awful decision would be made a lot earlier.

I hope you make the decision that is best for both of you.



I agree with NannaB. My mum didn't want to go into a home and with support from social services/continuing care, carers, Crossroads, District Nurses and family, dad was able to care for mum at home until her last days, when she went to the hospice.

Dad still got to breaking point several times, and wouldn't have been able to care for mum without all the support, and time for himself (a few hours a week). You need to do what's right for both of you and, if support isn't available, think hard about how you will cope in the long term, and your own needs. If you are burnt out you won't be able to care for your loved one.

Thinking of you


Like many others I get to a breaking point sometime or other each day but I take a deep breath go in a corner and stamp my feet and then I am ok .

we are all different though including the sufferers of Parkinsons , a lot depends on their nature in the first place .

as far as not answering I can relate to that and because of the blank face it's difficult to cope with , Sometime if you ask a question using different words they can answer straight away. not being able to release their grip is another symptom , they are not being stubborn , afraid of falling maybe but generall it's because they cannot let go .

Follett Sounds like my John was me having to push to get him started or raise and he wee be able then not able .

he has become worse but I am now finding a lot of things easier because we have the hoists lifts commodes in place now .


Beautifully asked for such a difficult question, seems like I could have written your post

No answers, I'm sorry. I am just about in the same boat. You are not alone.


You may also like...