This is a question for UK-based people who may have some advice or direction for me!
My Dad is declining. After much exploration, we feel we have exhausted many options around possible adaptions to the house (renovate bathroom to wet room, etc) and concluded that the house will simply not be suitable for Dad once he is less mobile.
The challenge is that my Mum is in great shape and could go another 20 years. She doesn't want to sell up their home, which they own outright, because she wants to stay there when Dad is gone, and they don't quite have enough 'cash' (who does!?) to buy an extra care/accessible apartment without selling their place.
We thought we might be able to rent an apartment that they could either both live in (and rent their own home out for a while) or just Dad could live in.
This is proving really difficult as all the places with supported care I have spoken to so far are saying that they will effectively be means tested, and ie, they will have too many assets.
This is such an unfair position for my Mum to be in, on top of all she is dealing with as Dad's primary carer she now faces losing her home and being forced to move into accommodation she doesnt want or feels ready for.
Has anyone else been in this situation and found a solution? Within reason my husband and I can help out in the short term financially if this would assist. But we are not really sure how to proceed.
Thank you x
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Koalagal
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A difficult one for you and I hope others can advise in some useful way. One thought..trying to be creative here :).apply for CHC funding ( do lots of prep and search this site for chc info, there's lots especially from Kevin1 and don't focus on personal cate needs but on mobility, cognition, behaviour etc . If you are successful you can get care at home and you can source a rented apartment that's accessible friendly - wet room, level access, open plan etc, at a level appropriate to needs, Many modern flats have this type of spec and don't need to be specialist complexes, We have care 6 days week with someone with my husband through the day and care can increase as needs do eg night care, live in (so suggest a 3 bed). Many people just accept a few hrs care visits thats offered which of course may be all that's needed to start with but you can and must push for more. If chc is granted they have to meet all care needs so if falls etc are a major hazzard or impulsive behaviour is common etc having someone for day or night is needed. This way you aren't reliant on supported housing which may not provide care needed in future anyway. Hope this might help in some small way xx
I am so sorry that you find yourself in this situation. I was in a similar situation when our home was no longer suitable for my husband and we did have to move to a bungalow. Sadly I could find nowhere locally and near enough to our home so we had to move 14 miles away but it was such a good move for him and he loved it and it is really suitable for me now that my own mobility is not as good. The only problem is that my car now drives back to our old village on auto pilot as I am still involved with so much there ! However a year later a friend in a similar situation did find a bungalow locally and the move has been a good one for both her and her husband. They put an advert in the local post office and paper asking if anyone in a bungalow wanted to move into a bigger home and there was a family who wanted to move into a house and have Mum live with them instead of on her own in the bungalow so they basically house swapped. I know that this is maybe a one off but it's worth a try. I will say, however, that I do not regret the move I had to make because my stress levels about falls and safety and coping with the situation etc were greatly reduced and it meant that I could still have him at home. Also my husband so enjoyed the bungalow because it had french windows and he could watch his beloved bird population almost as if he was outside, instead of being stuck upstairs, and that made me happy too. All the best AliBee
I have a husband with advanced stage PSP age 63. I’m 62 and also could have another 20 or 30 years left. He has progressed rapidly. We discussed moving closer to family last year but it would now be impossible to move anywhere as my husband is almost bed bound and we have a medical support network established.
We moved the hospital bed and my single bed into the lounge so I can see my husband at all times even if in the kitchen as he can’t be left alone. He can watch Tv from bed and I can do other things in the same room.
I can transfer hum from bed to chair with equipment in the lounge but it doesn’t fit into the downstairs loo so I have a commode I use and we bed bath as he can’t stand in a shower even if he could access one.
Six months ago he could walk around a large field, walk upstairs etc so be aware that progression changes things so unpredictably. Your dad will not be able to live alone as he progresses and he may end up in bed 24/7
So hard to plan ahead even xxx
We was in the same position only my husband lost him mobility we put our house on the market & I looked at bungalows but knew I didn’t want to go so we decided to stay & the OT sorted out plans to adapt our home so now my husband is downstairs & plans have gone in with no cost to us we have done things ours self also but we feel staying is the best thing for us , I’m also fit & younger than my husband so didn’t want to move away from family & friends. Hope you can make the right decision what helps you both . It’s definitely not easy getting Whatever you do don’t do it In haste. I’m the sole carer for my husband for now but I’m looking long term. Good luck on this journey.
Hi. My mum has CBD but a similar situation. As others have said, the conditions are unpredictable and my mum went from walking unaided to needing a hoist for transfers and a wheelchair within two months.
If you’re able to get an occupational therapist to assess the house, there is loads of equipment available that we know nothing about, but that can help keep people in their own home for as long as possible.
Please don’t try alone and ask for help from the professionals. Even though they don’t fully understand the condition, they can look at the symptoms as they present and help with aids to make life easier.
Yes, I would see what you can do at home. My mum uses a wheelchair commode, she has a recliner in the conservatory and we have converted a downstairs room into a bedroom. When she becomes totally bed-bound we will move her bed into the lounge so she can still be part of things. We have carers coming in 4x daily, often doubling up as she can still just about walk from room to room (about 40 steps) with two people supporting her. Not sure how long she'll be able to do that though. The carers buy in her food and prep as she's on pureed only. We're constantly re-arranging furniture and getting rid of things that are in the way - occasional tables, extra chairs, rugs on the floor etc. She hasn't been able to have a shower for probably a year so the carers wash her every day on her commode wheelchair and they also manage to wash her hair. It's not great for her partner who is finding his home becoming more and more like a hospital but there's no way around it. Mum did try a care home for three weeks but was left in her room most days, not walked and not fed so it was hopeless and more expensive than paying for the carers. We have been awarded CHC but no-one local to provide the care so we're looking at the PHB and using the carers we have in place. Hope some of that helps.
Your mum will not have to move if she does not want to. My mum has PSP in a nursing home and dad in another care home.
They were self funding until they reached the threshold.
The house has been empty for two years as mum has been wanting to go home but we have been unable to fund the care that she needs and social services funding isn't enough to cover what she needs.
They are going to place the fees from the home on deferred payments on the house which will be taken whenever the house is sold.
If one person remains in the house as your mum wants to, they can not make her sell if privately owned, this would be her choice.
Hi. Ive got PSP, and I have my home in a trust fund, this means the government can't take it into consideration if i need help or go into care. I really don't want my daughters to lose out on their inheritance when I've gone. It's definitely worth investigating.
As someone who sold my Mums house and bought an extra care flat in Kent. If I had my time over I wouldn’t have. Extra care is having a warden on site - they don’t pick you up or physically do anything except if you fall call an ambulance or next of kin.
But Mums place does have a restaurant on site, hairdresser, some social life and carers working on site who you can pay for.
Have you had a social care assessment? As they can go through options but if money isn’t available you don’t have the sell your house for funding your dads care. The other thing to keep in mind, your Dad might progress quicker/slower than you need and your Mum may not be able to care for him all the time.
I'll echo whats been said already - some creativity might help - and make sure to ask for the various assessments or funding they can apply for. I think it's important to accept the unpredictable and complex nature of needs when it comes to PSP. Extra care /supported living might not fill the needs - or not for long - so I would try to avoid an irreversible decision.
As the younger wife of a PSP patient I appreciate the concerns for your mother. Any move or big financial decision needs to suit the needs of both partners.
In our case, we spent a full year finding a suitable house (bungalow) and moved out of our old house before we had found the new one - close enough to family and work, and with enough space on a single level. It was quite stressful as I worried we might see a huge change in my husband's condition while we were "between houses".
I believe we can now cater for most of my husband's needs here. Living in a supportive village community is priceless.
Self funding adaptations, vehicles, physio and carers have a large impact on finances in the short term. Eventually needs will change - and CHC will kick in - so if you are able to help your parents manage the cash flow in the short term, even as a loan, that might make all the difference.
Hi, so sorry you are in this awful ‘club’ too. My dad has PSP and we went through the same agony last year. My dad declined rapidly after his diagnosis last year, and by September he had decided that he needed more care than we could provide at home. My parents had to make the heartbreaking decision to live separately and my dad moved into a nursing home just before their 56th wedding anniversary. My mum stayed in the house until July this year and has now moved into a rented retirement apartment while we try to sell their house. I secured CHC funding for my dad, and if your mum stays in the house no one can force its sale. Although a hard decision, it’s been best for both of them. My mum visits him several times a week, but can still join in things at her complex, and my dad takes part in lots of activities within his ability at the home. He is not affected mentally, just physically (speech, movement, swallowing) so he was fully involved in all decisions. It’s not easy but you’re not alone in this situation.
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