Options for Living Alone - Newly Diagnosed

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bassy77

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My mother was diagnosed with ALS last fall. She just turned 70 last month and is doing pretty well. Still walking with the help of leg braces and a cane, seems to have good hand and arm strength and so far no issues talking or swallowing. She lives in NC and has lived on her own for the last 16 years or so. She has a fantastic support system of friends in NC, but is feeling like she wants/ needs to move here (MA) to be closer to my family (as well as my sister who lives in NYC). She has a partner in NC, but they have lived separately during the course of their 15 years together. She doesn’t want to be a burden to him and he isn’t the type to step up and tell her to move in with him.

So we have been looking at options for her to move here. We have the opportunity to build a small house directly beside our house. It could be accessible and incorporate items that would be needed as the disease progresses. How realistic is it to think that we could find care for her given that she’ll be living alone? She does have long term care insurance that appears to cover some in-home care. Alternatively, should we be looking at assisted living facilities? She would like to build the house to move into, but I want to make sure that financially and logistically it is the best decision for her.

It is difficult to plan given that the rate of progression varies so much from patient to patient, but so far hers appears to be fairly slow to progress. But would just be interested to hear your thoughts.
 

Nikki J

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I have often wished for a crystal ball.

Sooner or later she will need someone round the clock and that someone will have to be willing and able to perform physical care pretty intensively. If you hire people it would certainly be good to be close by to supervise.

How hard it is to hire will depend on where you are located. The pool gets smaller here if you are not accessible by public transportation. Being near a nursing school would be a plus as you might get students. Are you willing to hire privately and do the paperwork,get insurance, deal with no shows? The alternative is agency which is more expensive and quality can be uneven.

Building sounds great but would take time, might not work out if you can’t get staffing and what do you do with it after?

Are you in a location where she could rent nearby?

How much time can you give to making this work?

As you can see I have no answers. Just giving ideas to think about
 

affected

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If you can build something really practical and quite fast I think that could be a great option.
As Nikki says the right answers are hard to find as there are so many factors. However, at some point the care will be high and we can't tell for how long.
Does she have a preference on buying or renting?
 

KimT

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If finances permit, I think a very small house right beside yours would be a great choice. This is a conversation you need to have with your mom and it needs to include all the expectations and financial issues.

As Nikki said, at some point she will require full-time care.

As a PALS who was on my own, I had to figure it all out for myself. None of my relatives were willing to step up or offer any kind of help. Your mom is fortunate to have you.

Some other thoughts: After your mom passes, will you be able to rent the house or sell it? Can you find reliable help? Are other members in your family able to pitch in (financially or physically) when your Mom's ALS gets advanced? Can she quickly sell the home she is in now? Will her significant other of 15 years provide any assistance (financial or physical?) How fast can the house be constructed?

It's a big decision and I think everyone needs to be brought into the conversation.

Let us know how we can help with information.
 

bassy77

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Thanks for all of the feedback. In our market, year round rentals are few and far between. Her existing house is paid for and should sell quickly and will pay for the new construction. We're looking at available condos for sale as well, but I feel like the money required to renovate a condo to be more accessible will end up costing as much as building new. The timeline is the biggest hurdle. Mom feels like she'll be ready to leave NC next by next April, but I feel like she is going to need quite a bit of help before then and how long will she be able to live in the new house before needing to move on to a nursing facility (or maybe she can live out her life in the house)...as all have mentioned there are just too many unknowns. I guess if what she wants is to build next to us and feels most excited and happy with that option then we will probably go for it and figure out how to make it work as long as possible. Weighing the options, it seems to be the best way to have her close to family and keep her invovled in our lives as much as possible.

It seems there are definitely PALS that live alone for a long time with in-home care.
Thanks again
 

nona

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It seems there are definitely PALS that live alone for a long time with in-home care
For what it's worth, I am in that category, except for 11 months of living with my sister and her family in Arizona. I found that living with (loving, supportive) family was not worth leaving my home of 20 years that was rich in friends, weather, and other familiar, comforting factors. My world shrunk considerably when I moved and that was harder than I expected. My experience may be unique to me but I wish I had tried it for a month or two before selling my house and investing in a new place (my house proceeds went into renovating her house for my needs), only to leave a year later. I think there's an emotional need that for some people is as important as a physical one.

This is a complicated, challenging path, full of unknowns and forks in the road. Having a plan is great, but having flexibility and a plan b is important too.
 

KimT

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I ended up selling my condo and my best friend of 30 years sold his house at the same time. He always wanted to live on the beach (we were about a 15 minute drive from it in the same development) so we went in 50/50 on a large beachside condo. It was perfect because I've made many friends here, it is much more convenient, grocery story and Walgreens both deliver but are less than 1/4 mile away, beautiful dog park 1/2 mile away, parking on the floor you live and accessible ramps to get to social room, library and other areas. Two heated pools. It was a win/win for both of us. Worst part is that our places both sold in less than a month so we were here for the entire remodel. We pretty much gutted it and got new windows, too. The whole process, including the new windows, took nearly a year but most of it was done the first six months.

Sadly, there is no predicting this disease and how fast it will take us.
 

bassy77

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For what it's worth, I am in that category, except for 11 months of living with my sister and her family in Arizona. I found that living with (loving, supportive) family was not worth leaving my home of 20 years that was rich in friends, weather, and other familiar, comforting factors. My world shrunk considerably when I moved and that was harder than I expected. My experience may be unique to me but I wish I had tried it for a month or two before selling my house and investing in a new place (my house proceeds went into renovating her house for my needs), only to leave a year later. I think there's an emotional need that for some people is as important as a physical one.

This is a complicated, challenging path, full of unknowns and forks in the road. Having a plan is great, but having flexibility and a plan b is important too.
I have had this exact conversation with her on several occasions. I'm very worried that her world will shrink (my wording exactly as well) too much, but she feels like she really wants to make this move. The same situation happened with her father. He moved to assisted living in the town she was living in and within 6mos he moved back to Florida, so she is very aware that it is something to consider. I think she feels like she'll have time to make a community for herself here quickly, but I'm not sure how realistic that is. Her world is already changing, however, as many close friend begin to move or at least travel for extended periods of time to be closer to their kids and grandchildren.

We visited a very nice condo today that could be renovated relatively easily to be fairly accessible that is a 5min drive from our house, so we'll discuss it as an option.
 

swalker

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You have received some good advice from others. I will add some of my thoughts for your consideration.

Having a house built, even a small one, will likely require you to devote substantial time and energy for the project. You will be meeting with architects and builders, dealing with permits, and facing the inevitable delays. Many people enjoy these challenges, but when simultaneously dealing with a PALS, I think you could find the situation to be a bit overwhelming. Do not underestimate the burden you will encounter as your PALS progresses.

Every minute you spend on the new house project is a minute you cannot spend with your mother. Those moments can never be reclaimed and I would not want to spend them on a house project when I could be spending quality time with a PALS.

Where I live, building even a small house or cottage takes at least a year and more likely 18 to 24 months. I see that you are from Cape Cod, so would not be surprised if you face similar timeframes for building. Will your mother even be in a position to use the house after it is completed?

When she needs full time care (which is almost inevitable), will the house accommodate it, or will that be the trigger that causes you to transition her to some kind of care facility? If someone is going to be living with her, be sure the house is big enough to support that. Also, make sure it is big enough for power wheelchair, hoyer lift, and other assorted equipment. You may be surprised at just how big of a house that results in.

In my experience, when designing the house, you need a disabled person to review the house to see if it is really accessible. Friends who are older, but not yet disabled, had an architect design their accessible house. They were surprised to see some of the limitations I encountered when trying to navigate through it in my wheelchair. Validate the design before moving forward with construction!

You said your mother is 70. In my limited experience watching forum members here, folks who are diagnosed when they are older seem to progress more rapidly. Whether it is because of age or some other factor, I cannot say. But, based on that experience, I would be hesitant to be making plans for living arrangements that could likely be a year or more away.

Steve
 

Nikki J

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I agree with Steve and I did not realize you were on the Cape. I suspect getting reliable help round the clock would be difficult. You might want to call Ccals. It is a private charity that provides some patient support. They are based in Falmouth and may be able to give you some idea of what resources would be in your specific town. They don’t themselves provide home care on a day to day basis but they would be knowledgeable. Google CCALS Falmouth
 

bassy77

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Thanks. We have met with Ron from CCALS. They have been helpful and I'm sure will be more helpful once Mom is here. Fortunately, he has a few patients that live alone locally, so we'll have some sources to draw from.

Also, I'm an Architect, so planning, managing construction etc is not particularly daunting, but no doubt is a considerable effort beyond or typical workload. We've had the opportunity to design fully accessible houses in the past (albiet for MS, so different needs). She won't be living here for a while (at least that is her hope), so all design and most of the construction will take place before she is local anyway as construction will take 9-10 months. But it is certainly reasonable to ask how long she'll even be able to use the house. I have brought this up, and I'm not sure she is quite ready to consider it from this point of view. Certainly the overall cost and timeline is the biggest concern.

Thanks for all of the feedback.
 

lgelb

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I have to agree that building new seems like a time sink given the competing demands of supporting your mom. It would be more important for her to be close to you than to have the perfect place. Many of us make do with "non-ADA" homes so long as a wheelchair can be used. Older age at dx is indeed a greater likelihood of a faster course. The proposed 9-10 month delay in her moving based on the data in this graphic seems problematic.

But given her "fantastic friends" in NC, and the prospect of at least some presence, I presume, of her longtime partner, I would have another stress-test-the-plan conversation. There is no substitute for what she would be leaving and it would not be possible to recreate, at root. Are you/your sister able to travel to see her regularly if she stays? Would you be able to be with her when the time comes? Maybe she thinks you would not or should not have to. Get your/her assumptions out in the open.

Best,
Laurie
 
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bassy77

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She has always planned on moving here at some point and this just sped up the time table. The difference being is had she moved here in good health, there would be more opportunities to develop connections here.
 

KarenNWendyn

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We visited a very nice condo today that could be renovated relatively easily to be fairly accessible that is a 5min drive from our house, so we'll discuss it as an option.
If she insists on moving, renovating the condo sounds like the best option to me in terms of less time and money than building a house from scratch.

Is adding on to and modifying your home an option?
 

bassy77

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Unfortunately, our house is can't be added onto because of conservation and zoning restrictions. It would be great if we could add an in-law accessory apartment, but our house is too restricted. I've looked at buying a bigger house that could offer a bedroom or in-law apartment, but the options are extremely limited and would cost as much (after renovations) as the combined total of our house and buying/ building something small. From a longer term estate planning stand point, it just doesn't make financial sense.
 
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