Planning for care

[Ruffner]

Looking for advice from those who have been at this a while. We are very conflicted about how to plan for future care. Currently, we live in our own home, no mortgage and although it is one floor living it does not have adequate hallways, doorways for a wheelchair and the bathrooms are very small. We are managing fine now but I worry about the future when wheelchair might be needed along with nursing care. We would like to avoid assisted living since, in the United States, it is not covered by government insurance. Do most people with MSA live out their lives at home? Any advice, experiences, etc. would be greatly appreciated.

[Jud11]

HiMy husband has been suffering with MSA for around 4 years now. We decided around 20 months ago to sell our house and move into a wheelchair friendly retirement village. His condition at the time of the move was not too bad but he has deteriorated a lot in the past 12 months. The apartment has wide doorways and a wet room with grab rails, which has been a godsend. Although he is not yet using a wheelchair, his balance is awful and he now requires a rollator to support him around the apartment, the wide doorways enable him to get around safely. We feel it was the best decision we have ever made, although it was an awful wrench to leave our house, a home we had enjoyed for nearly 40 years.

I wish you all the best of luck and hope our experience has been some help.

Regards

[Hidden]

Hello I think it varies, because it comes down to what level of support is available. We did keep my dad at home with the help of lot of professional carers, but needed to move house to do that. The alternative was that he would have to sleep/be cared for in the lounge room with no access to a bathroom or to be able to leave the house. Great idea for you to be thinking ahead. With MSA, basic things like having a wet room/wide doors/ramp can really increase the person's quality of life, as their world becomes more limited. One challenge we had was it took much longer to sell the house and move than we had planned, as the housing market was slow. So I would say go for it and do it now, if that's what you decide. Also before your caregiving role increases and takes up lots more of your time. Kx

[writerinlimbo]

We moved to a single storey house and changed the bathroom to a wet room, widened doorways and knocked two rooms into one for open plan living - to make it accessible for him. When we moved here, he was using a rollator, a few months later he was in a wheelchair, a few months after that and unable to move himself, he was in a tilt-in-space day chair provided by the OT, which I wheeled from bedroom to sitting room. The OT fitted a ceiling track hoist in his bedroom, provided a tilting shower chair and I was able to care for him for the rest of his time at home. Latterly, with help from professional carers.

Unfortunately, his MSA progressed extremely rapidly and 15 months after we moved here (just 19 months after his diagnosis) he died. However, if this hideous disease had not raced through him, I am sure he could have remained living comfortably at home. It is of course physically and mentally exhausting, but moving to a nursing home would have been his idea of hell and I was determined not to lose the remaining time we had together.

I would suggest you do whatever is possible, while your husband is still well enough to cope. But ultimately, trust your instincts. So sorry you are both going through this and wishing you strength.

[Ruffner in reply to writerinlimbo]

Your stories are heartbreaking but also inspirational to me as we try to come to grips with this disease. You have given me a lot to think about. I'm going to visit a retirement community today just to get some basic information and to see if there is a wait list. Modifying our existing home doesn't seem feasible so if we decide to do this at home we will need to move. My husband doesn't want to do anything as each option is overwhelming for him. He wants to take a day at a time approach. I've tried to explain to him that, at the very least, we need a plan. Thanks to each of you for taking the time to tell your story and offer suggestions.

[Lenosa]

I live in the US. My husband was diagnosed with PD IN 2019. We moved closer to our daughter and found new Dr. He diagnosed my husband with MSA. Our house has a step down in dining room and small bathrooms as we were downsizing. We are currently looking for an independent living community with no steps, wide doors and easy access shower. My husband thinks he is fine and is still in denial about this disease, but I am determined.

[Ruffner]

Hello Lenosa, Your story sounds familiar to ours. I looked at a independent living community today - long wait list, very expensive option for us. I think I'm leaning toward modifying our existing home and hiring nursing help when it becomes necessary. We own our home, free and clear, and live in an area where there are lots of community services available. My husband is very much in denial and hoping he has been misdiagnosed. It is possible, at this early stage, that he has PD with autonomic failure but his MDS is staying with the MSA-P diagnosis. No matter the diagnosis, he is deteriorating much more rapidly than I am (with IPD). Is your husband having significant cognitive issues? This has been a problem for us - not dementia - but slow processing, memory deficits and at times confusion. He does not drive, and doesn't leave home except for doctor appts. He still walks our dog a few blocks but this activity leaves him windy and woozy. Thank you for responding - I would like to stay in touch. Lori

[TK-67]

I'd agree with everyone else, a plan is good, MSA is very unpredictable sadly.

[Lenosa]

We are visiting independent communities with villas farther from where we live -next week. What we have seen in the immediate area has not been impressive. My husband does does not have visible cognitive issues. He still wants to wait for looking as he does quite well now. He exercises daily for an hour and dr said this is best way to combat progression. But as You mentioned, there are waiting lists. We tried CCRCs but deposits are huge. We are currently looking at a different option. You pay a small deposit and then a monthly rent. If you run out of money - they kick you out, unless they have a smaller option available. The rent goes up every year and that is worrisome- but I think we can manage. It includes housekeeping, meal and there are numerous social and physical activities, which would be beneficial as we are new to the area and have been unable to make friends. It will be stressful to move as we went through it 2 years ago- but if we take our time packing and preparing - I think it will be better in the long run.

[Ruffner in reply to Lenosa]

Good luck with your search. It's so difficult to sort all of this out and make plans for an uncertain future. I think that getting on a wait list is a good idea. The place we looked at asked for a small deposit and if you aren't ready to move when your turn comes up, you remain at the top of the list. Thinking about doing both - setting up home for in-home care and getting on a wait list. It's wonderful that your husband exercises for an hour daily!

[Lenosa]

I can't do anything to this house and would not want to spend the money. We are not in a big rush. My husband can walk without assistance, has trouble getting out of chair and walks and talks slow- but physically he does fine. He did fall once but it was his medicine that needed tweaking. I just don't want to be surprised by something and then be in dire need. Are you in the US?

[Ruffner]

Yes, we are in Ohio. A year ago, when we suspected atypical PD but did not have a diagnosis we thought we had plenty of time to get our planning done. Now, my husband is no longer able to help me with any of this (planning or physically making the move). I wish I had acted sooner.

[CanAmK]

We too are in the US (Virginia). We have chosen to remain in our current home with modifications as that is my husband's desire. We live right next to where he grew up and this makes him feel more comfortable. I do feel like a smaller home would be more manageable and less stressful but this is the plan for now at least. We remodeled our bathroom with a roll-in shower, bidet/toilet combo cupboard for supply storage and lots of grab bars. We did choose to put in two overhead shower heads and two hand held sprayers to allow for him to have continuous warm water while i am spraying him off on specific sites. I feel as though it is difficult to find appropriate housing and building is very expensive compared to pre-Covid. appreciate the difficulties you are going through.

[Lenosa]

We put our name on a list for a house in a independent living facility. There was one available, but husband said it was too soon. It is one hour from our current home. Recent dr visit said husband’s MSA is slow progressing. So after visiting friend in the area where place we like is, she suggested a newer home in 55+ community. I am not on board with that, as it buys you all the home maintenance issues that we have now. My husband can’t communicate very well, so I would be in charge. I have a realtor looking for us now, but just the thought of roofs, appliance failure, painting and inspections is not something I feel I can endure.Independent facility is expensive and we could run out of money- but we could also see his progression accelerate ( dr said if he got Covid or any virus). Lots of ifs and buts. I am still siding on independent living with assisted living facilities where food and cleaning and utilities are included.

We shall see

[Ruffner in reply to Lenosa]

It must have been music to your ears when you heard "slow progressing." My husband's progression has also been slow giving us more time to plan. I understand your concerns about the maintenance issues involved with condo living. I intend to respond to Derkie54 next but I like his way of thinking. We haven't made much progress with this issue beyond talking. Take care.

[Lenosa in reply to Ruffner]

There is no way I could help my husband with any of the things derkie54 is doing. My husband is 6'5" and I have osteoporosis. We might take a look at some 55+ communities, where outside maintenance is included.

More later

[Derkie54]

Hello Ruffner,

It's a very good question.

Everyone has a different journey and outlook.

My wife would not want to move out of our home and prefers to be cared by me.

Her MSA is now at a point where she has no mobility at all.

We use the wheelchair in the home as well as outside, no wide doorways unfortunately but we manage.

She cannot get in the bathroom or kitchen anymore but we manage.

MSA is a unpredictable disease, as things change we adjust to our new normal.

There are lots of things we would love to do but now we just accept the things we can't.

We are considering changing the bathroom into a wet room but for now inflatable washbasins on the bed for hair washing and wash downs are the order of the day.

This may not have helped you much but we're just trying to say you've just got to do the best you can with the resources and finance you have available.

Take care, and keep smiling when you can.

Derek

[Ruffner]

Thank you for taking the time to share your wisdom. Perhaps I am overthinking this. You are right about adapting to and managing the challenges as they come along. I'm going to give your response a lot of thought and see if we can find creative solutions to the issues if and when they surface. My best to you and your wife.