Wife with advanced Parkinson’s + dementia + episodes of delirium + other problems. We have paid for carers in 3 days + 3 nights per week. I established a while ago that if the professionals could no longer cope, it would be time to move my wife into a care home. We hit that point earlier this week and she is now in hospital. I am researching care homes to find one suitable but my question is how do we persuade her that it is no longer safe for her to live at home once she comes out of hospital.
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Hi @Noddir … I don’t have any answers but I have thought about this as my husband also has advanced Parkinson’s and dementia. We are currently managing at home… my 19 year old has stepped up and we share the care. Like you, I have said that if professionals carers (who come in and 5 mornings a week and 3 lunchtimes) say they can’ t do it anymore, which would mean that they and us are unable to move my husband, a care home would be necessary (currently he needs help to stand up and he furniture hops to get around)
I’ve thought that I would just say that we can’t manage - the carers can’t move you anymore and we don’t have room in the flat for a hoist. And I would get PD nurse and other hospital people to say the same thing and that it wasn’t safe for him to come back home.
I think it’s easier if you can get the social worker or medical people to assess that it’s unsafe for your wife to return home and that she won’t be allowed to. It will be hard but if it’s not safe for her to return home she can’t.
Kind lies may be the answer. A temporary admission that becomes permanent?
Hi Noddir
A personal opinion based on how we talked with Dad
Share the truth - You love her, but for her safety and ALSO for your safety, what you have at home - the set up, the support, the routine - is too much for you to handle now, even with carers, because even those carers cannot provide the love, care and attention she needs to be safe, healthy and cared for at home now. The situation has shifted and you’re no longer able to provide what she needs and you can’t physically mentally do this anymore. (I know this confession/vulnerability may seem like surrendering or giving in or whatever other guilt thing we feel but remember this is not only about us, it’s about her safety too)
Highlight the mental stress and exhaustion you’re feeling trying to coordinate all of this at home
Also highlight the reality that if you find a care home, that you will make sure is comfortable and appropriate you can BOTH finally share quality time together, and she can also see other family/friends more easily
the reality of the impact all this is having on you can most often, get through the delirium if you can calmly with space and slowly share this with her…Often dementia patients have lost their orientation of space and time and imagine everything is fine…because let’s face it - you HAVE been making sure she’s ok with the carers and it all will look seamless
sharing the hard truths of how much you’re worn down isn’t being mean or nasty, it’s the truth…
hopefully this way, you can reclaim some time as husband and wife
If communication isn’t being understood, then unfortunately perhaps if things are that bad, the time or point of needing to persuade, or get agreement from her, has passed. If you have power of attorney they you need to act in her best interests, regardless of what she says or how she acts in the moments of relocation…once she’s safe in the new place, she may not remember the upheaval.
You need to conserve your energy on finding an appropriate place first though…We’re here to support.
I hope this helps, but please feel free to ignore these thoughts every situation is different.
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Wow! Great advice Victoria. I think you’ve really hit the nail on the head.
Not sure she will understand/ agree but as you say, if not then I must exercise my POA and do what’s right for her safety and my sanity.
Thanks again.
Richard.
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Remember you were given POA exactly for this sort of eventuality, trusted to do the right thing more than anyone else.
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Hi @Noddir
Maybe discharged into respite would be an option to get her used to the idea of having 24/7 care.
It’s really tough. My husband has just gone into a home after numerous periods of hospitalizations. I was dreading having the conversation about moving into a care home, but to my surprise he agreed. We are both still in a period of adjustment and I still feel guilty! Nothings easy!
Take care
Am I doing the right thing?? The decision has as been made to move my wife to a care home but I know she is going to hate it. She’s still in hospital although medically fit for discharge. I keep thinking that I have failed her and that I should have tried harder to keep her at home with 24 hour care, live in carers etc. The hospital have deemed it unsafe for her to return home for her own safety but I am still conflicted.
Do I go with my heart and try again at home or go with my head & find a care home. My youngest son has moved in to help but he too has problems and the strain of coping with the dementia/ delirium has severely affected his mental health also.
I think I have probably answered my own question but would welcome some feedback.
Yes you are doing the right thing. It’s really hard but once someone with advanced Parkinsons has reached a stage where the medical professionals say it is unsafe, it is time to do the care home.
I am going to be in the same position as you at some point as my partner has Advanced Parkinsons and Parkinson’s dementia - myself and my 19 year old son are coping now but I am aware if it gets to a stage where he is unable to move at all OR the dementia gets alot worse we will have to do a care home because it won’t be safe for him and it will be too much on me and our son.
Please contact your Parkinson’s nurse - you should be entitled to some palliative care… that isn’t the same of end of life care but it helps you work through options, gives you and your son access to counselling and support particularly through this difficult transition.
@Noddir PLEASE PLEASE PLEASE do NOT have your wife at home.
I hear you and it is completely normal to feel everything you are feeling. Sending big hugs and support.
There is guilt, and heart wrenching love being torn - BUT this is about medical safety of her AND you AND your son.
We tend to think we can appease our emotions or get rid of the difficult, painful things but honestly we can’t and it’s not the way to do it having her home.
When she goes to the care home it’s going to be difficult and emotional but considering what COULD happen if she were at home…believe me there is a LOT of risk, falls, for all 3 of you…then what would happen if something happened to you/your son…
Reality is painful BUT I’m impressed the hospital have decided she needs to go to a home…this objectivity doesn’t always happen…which tells you something else…she MUST really need a care home setting. They do NOT deem these things necessary on a whim
She will hate it, you will all have tough times…so psych yourself up for standing your ground and making things happen practically AND THEN you can plan a nice long visit with her, with some nice food bits, music etc and you can BOTH have quality time together…instead of you trying to plan, avoid, risks and organise 24/7 care at home!!!
I hope this helps…sorry if I’m being very direct, but we just about survived caring for Dad…just.
If the medics deem it unsafe to have her home - this means you won’t have the traumatic events & lasting images of those in your mind…
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@Noddir
I feel for you.
Similar happened to me when my late husbands consultant wouldn’t allow him home home for his own safeguarding and mine. Broke my heart.
It took a while for him to settle and for my family and myself to adjust.
He had vascular dementia strokes and other health issues. The delirium was dreadful.
However we somehow managed to adjust, and realised it was for the best. His needs were paramount.
At first he used to say " come on we better get going for home". My reply was never you can’t go home again, but we can’t yet as the Dr has to sort out your medication and discharge notes, Somehow he accepted this from me. I learnt to be one step ahead about many things. I suspect you will too.
I’m sure this isn’t much comfort to you at the moment but I hope it helps a little
@Noddir - look at it another way, if you went against the hospital advice and had her back home and something happened to her - how would you feel then?
You cared for at home as kind as you possibly could. The decision has been made for you. The care she needs now requires a team of people.
Your caring role is now to support her with this change, help her to settle and pass on your expertise to the nursing home staff.
Make her room a lovely place for her to be. Have photos and trinkets that give staff a glimpse of what she was like before her ill health.
Visit her, keep an eye on the care she is having, go home and rest and develop your new routine - knowing she now has a team of people giving her the care she need.
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I felt a huge sense of relief when mum went into residential care. I’d been juggling her needs and those of my family, including my brain damaged son, since 1976! I wasn’t redundant though, still caring for her, picking the flowers she loved from her own garden, buying extra nighties, soothing hand cream, etc when I went shopping next. Her nursing home was on my direct route to my supermarket. At first expect a huge wave of mixed emotions, and tiredness as you gradually relax, then gradually they will settle. A new life will gradually develop. Make your own list of what you like doing, trips out, a weekend away, perhaps?
I have now found a care home which she can go to in 3 days time. We haven’t broached the subject yet. I think if we did she would dig her heels in and refuse to go. I’m having nightmares about how to transfer her from hospital & into the home so that she doesn’t completely reject the idea and make such a fuss that the care home won’t keep her. I’ve seen the idea that there should be someone with her at all times during the first 72 hours. Alternatively that it is better to get her in there but not visit for a few days to allow her to settle. Any comments?
It would be better to have an ambulance transfer. If possible you want her to think it’s being arranged by the hospital, not you, maybe for convalescence as she needs to get better?
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@Noddir I agree with @bowlingbun ambulance transfer
I’ve never been in your position, so please take this as hypotheticals from me
To your question - my gut instinct is for you to trust yours…how good is she at orienting herself in time and space? a few days may seem like a month…Also to BBs point I’m not sure if she thinks she’s there to ‘get better’ will she keep asking you when her ‘jailors’ will let her come home?!?
I’ve tried to use simple truths but not to dwell on them and then distract - This is for your and our safety…do you understand that we want the best for you…and then I had nice food, or a tv programme / music or talked about nostalgic things or people…
Sorry - that may seem simplistic and it was never smooth…but nothing ever is, and you can’t expect yourself do find a perfect solution…the thing is none of this ever is BUT it is a safe comfortable path forward for her and you…
Whatever you decide or do IS right - there was a comment recently on an article I read she wrote ‘just know you can’t do this wrong’
We second guess ourselves all the time. Nothing is good, easy or the best…but you’re acting in her best interests…and yours!
Take care - keep us posted. Sending some strength over
The hospital have said it’s not safe for her to come home, according to your earlier post. You are helping her to have the best care home. What she NEEDS but not wants. Your role will change, a different kind of caring.
I have to say that this forum has been an invaluable help and I am eternally grateful for all the help and advice. Thank you so much.
Ok next question. Once we have got her into the care home tomorrow, I am anticipating that Jan, my wife is going to be asking all the time, ‘why can’t we go home ?’ social services & hospital have deemed it unsafe for her to return home and that she lacks mental capacity to make her own decisions. Other than saying that it isn’t safe, which I am sure she will challenge, what other excuses could I use to pacify her?
You need a “stock phrase”.
Something like “It’s not up to me, it’s up to the doctors now” and “we have to wait and see”.
Keep using the same phrase over and over again.
The important thing is that you deflect responsibility away from you.
By saying “doctors” plural, it means that it’s not just one responsible".
Noddir, I would have a few stock answers prepared and then distract her e.g ‘until the doctor says you can go home; now would you like … / shall we …’ etc