Changes to home/house...will he be able to... - PSP Association

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Changes to home/house...will he be able to cope with upheaval? Any advice?


Hi all, I don't know if anyone can help with this as each case is so different, and every family situation different as well. Dad (79)has PSP, diagnosed last summer. He is currently still very mobile (touch wood), but balance is an issue on transfers and steps. Word finding is becoming an obvious issue and he would need assistance with things like the tablets, organising himself etc. Mum (78) is his carer. Myself (only child) and my husband live an hour away but are currently looking at houses in the town Mum and Dad live in.

Another option we have is to extend onto my parents home (whilst also doing the adaptions that are needed for Dad in the future), and live with them. For this to be an option, we would need to create our own space so we are not living in each others pockets. We've explained to them that we would be doing this to help them, and if it is not something they want to let us know. They have said it is something they would like, I think Mum would like the company as well as the help, and I think she would like herself and Dad to have something new to look forward to amongst all the PSP "stuff". However, in order to achieve the remodel of the home, the architect has advised that they would probably have to move out of their home for 4-6 months.

Mum is now excited about the prospect of it but I'm fearful of what a temporary move to unfamiliar environment for those months might do for Dad? If it were this starting this week I feel it would be ok, but it might be another few months until we are at the moving out point, and we don't know how Dad will be by then. If something were to happen, would we/I feel guilty for making him move out? So hard to make a decision on an unknown. I can picture the end product helping them, but just not sure if it is worth all that has to change in the meantime?

Cat xx

17 Replies

Cat what a lovely thing to do for your parents. I think if you had a place for your dad and mum to move into which would have the facilities for your dad, I can’t really see a problem, as long as it was safe for him. If he can still get about, I am sure he will be ok, he has still got his mind, if he saying that is what he want then go for it. Your mum sounds excited about it all, will give your dad something else to think about, your mum something to look forward to. Sending you a big hug, lovely daughter xxxxx

Thanks Yvonne, I'm not great with decisions at the best of times, never mind big ones based on the unknown, bit of a procrastinator. But I guess if we make decisions for what we think is the best at that time, on the knowledge we have, then that will always justify it to ourselves?

Thats the only way to make decisions, Catherine.

No-one knows how quickly it will progress. We can only do our best. Must keep hope alive - it could progress slowly. The worst thing for everyone is sitting waiting for the worst.

I assume you get on well with your mother and could envisage eventually sharing with her alone ?

Good luck. Keep us posted.

Love, Jean

Thanks Jean, yep I get on really well with her. At the mo we're both trying to protect the other as much as we can. Alan gets on with her a lot too - I think he's even starting to steal my no 1 spot! I suppose even if we hold off now we will face this decision again when Mum needs help. I'd like to think that having this new living arrangement when complete, would make it easier for her at this stage in her life, and help her enjoy it as much as she can.

sounds great !!

How are you doing Jean?

As well as can be expected. Like you our family is very close and supportive, although I am now living on my own. I am fortunate to have excellent health for my age !

I am still bereft and grieving but will start new things in the spring.

The memories you are still making help sustain this stage .

Love from Jean xx

Hi Cat, I think what you and your husband are doing is fantastic. Your husband is very supportive agreeing to uproot his family for yours. It will certainly take a lot of pressure and worry off your Mum and I think your Dad will be happy where ever he is surrounded by his family who are taking such good care of him. A new adventure for all of you, a distraction from PSP for a while. Wish you the very best of luck, you are a great girl doing this for your parents. A credit to them.


Cat, I’m in the exact same situation except I am my mom’s carer and we’re making the changes to our home so she can live with us. Oh, and it’s an 8-month move out and my mom sounds and to be a good deal further along than your dad. She’s 77 and was diagnosed 2 years ago. Finding a place to rent that is accessible for her and big enough for my husband and 2 energetic boys has proven challenging, but I try to keep my eye on the prize - her being able to live the remainder of her life in our home rather than an institution (which she’d consider a last resort). Our experiences have involved sudden and unpredictable declines, so I’ve learned not to get attached to any assumptions about this disease! I just hope we make it back in the house (my nighttime fears involve her dying before we get back in) - the rest is part of this wild ride called PSP. Good luck! You can make it work out, I’m sure of it!

catherine_h in reply to NHGrace

thanks Grace, it definitely is unpredictable when u read everyone's stories. if we got refurbishment done incident and relatively stress free u imagine the end product/environment would b worth it, d other option is to leave their house as is with minor adaptions for dad and live close by. that way the upheaval for them isn't required. when do u think ull get to move back in? much love to u,it mum and ur family xx

True, but it seems like short term discomfort for long term stability, no? What if your mom someday needs help as well? If you like their home and there’s enough space, it seems to me you're in a fortunate situation! Will you now need to commute an hour or will you and your hubby be able to telecommute or work locally? I know for us, knowing that my mom gets social stimulation (too much some days maybe with my boys!) was worth it. In your case, your mom would also benefit socially as emotionally (I’m sure) from having you there. We do not have the luxury of a distinct space for my family - but at least my hubby can stop sleeping on the couch! And we’ll have an upper floor my mom probably won’t use with a deck, so that’s something.

We haven’t moved out yet - looking for accessible rentals in Cambridge, MA has proven daunting! Plan to be out as of 3/1.

Wishing you all the best with making your decision and the inevitable short term challenges it not doubt will involve. Once it’s behind you, I’m sure you’ll all feel better for it.


catherine_h in reply to NHGrace

thanks Grace,guess ur saying what I'm thinking. best of luck. we are in Ireland near Dublin where rental market has gone crazy, it will b a challenge!!!!! But what's another layer to get through!!!!

Marie_14 in reply to catherine_h


How is the house hunting going? I was wondering if you were Irish. Just some of the words you use! 😊 I have lived in England for many years but was born and raised in Dublin.

I know what you mean about the house prices taking off again! Wish I still had our old family home as my brother and I would willing rent to you. Sadly we sold it though.

So where do you want to live in Dublin? Or where do your Mum and Dad live? Can't think of anyone renting at present. Everyone seems to be making provision for their kids if they don't already own a house. It would be cheaper outside of Dublin?

Marie x

catherine_h in reply to Marie_14

Hi Marie,

Lovely to hear from you - didn't realise the typed word gave so much away! That would have been a lovely offer. Mum and Dad are actually in Drogheda about 40mins north of Dublin. It's quite commutable to Dublin so house prices have sky rocketed too. Unfortunately, the building on option isn't a runner anymore as in reflection I don't think Dad was quite up to it, but I'm so glad he voiced his concerns, and at least then decision kinda got made without actually having to make it. But now I feel guilty (good old irish guilt) because I know Mum was so excited about possibility of something new, company and is now worried about how she'll cope. Feel like I've let them down, but it would've been too hard to move in the house as it is. So now we are looking to buy our own place in Drogheda close by.....

How are you doing? Do you find Spring coming helps? Do you get back to Ireland at all?

Marie_14 in reply to catherine_h

Catherine yes it is funny but certain words do give you away. In fact even the way we compose sentences do too. Living in England the first thing I learnt was to stop using certain words. I am not sure I am there even now! 😊 I sound like a cross between Irish and English I think. I tell people I have an Irish Sea accent!

I know Drogheda. It was one of the first places I visited when I was a little girl. A long time ago!

The guilt you feel has nothing to do with nationality. We all go through it no matter where we come from. We feel guilty because we think we haven't done enough. That will stay with you even when your Dad has gone. Eventually you learn to be more forgiving to yourself. We all do the best we can and nobody can do more than that?

Your Mum will find it very difficult to take care of your Dad as he progresses. Some people have managed it but they are the exception rather than the rule.

I hope you find a place near your parents as they will need you.

I haven't been to Dublin for almost 5 years now. I had no real reason to go. My brother lost his wife just over 5 years ago and he moved to Spain within 3 months. So now I hardly see him. I have a niece there and cousins. Most of them older than I am, so I never had much in common with them anyway but I did go to see some of them. I keep thinking maybe I will go for a holiday but then think I should go to see my brother. I think I will have to toss a coin! 😊

Hugs to you.

Marie x


Can you rent/buy nearby? My husband and i moved from New Jersey to Texas to be closer to care for my sister. Altho' she lives in assisted apartment with 24/7 care by aides, there are times when an aide is delayed or not arriving or on vacation, and i will be there with my sister. I live only four minutes from my sister. It is a lot of work to care for her as it seems she is in more advance decline than your Dad. It does take a toll on the caregiver and their spouse. My husband is a wonderful caregiver himself to her but there are times when he cannot do the feminine duties that my sister needs. And, when she was still able to come to our house for weekend or day visits, it took a toll on us. I felt that she was in my care and all else had to stop while she was with us. My husband is very patient but meals did not get prepared or it was interrupted, plans had to be changed, etc. I'm not complaining but once you live with your parents, you will find that your life will change and the relationship between your parents and your husband and you may become strained. I vote for you not to live with them but find your own space with your husband. Live nearby. You can make daily visits. Your parents may want to live by themselves to spend their last years together.

Hi Cat, I’m curious to the outcome to your attempts to get closer to your parents? Did you move? Is it working out? Was it a good choice for you? What are the positives? Negatives?

When my my own mom was at the point of needing extended family involvement, I tried to get her to remodel her home for the ability to care for her in place, but the condition had already rendered her ability to plan/accept the future difficult - and she didn’t want to (couldn’t) deal with it. (She did not have a spouse.) Her decision was to have my sister move in and be her caretaker - which lasted 10 months before my sister unexpectedly died.

We moved Mom to an assisted care facility because I had my mother’s and sister’s businesses to run (property management), my mother’s affairs and my sister’s estate - it was easier to hire out the care taking as the business involvement was complex. (I’ve since finished my sister’s estate, liquidated her business and possessions including selling three houses) I still manage my mother’s business and personal affairs and ended up selling my house and moving into hers because selling hers would have been more complicated. In retrospect, because her house was not remodeled and she detorated rapidly once she started needing help (now is fully bed ridden), moving to the facility that was designed for wheelchairs and Hoyer lifts was the best because we couldn’t have anticipated (or easily have created space in her smallish house) for all of her needs now.

The condition affects us all in far reaching ways - moving is exhausting, I’m physically wrecked after moving contents of and selling 4 houses in the past year and a half. And I sit in a much smaller house now with boxes of unpacked stuff everywhere. Though my sister’s death wasn’t the result of CBD (though the strain of caretaking didn’t help), most everything else (the massive upheaval in our lives) was/is.

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