Housing options for my Mother-in-Law who was just diagnosed:(

[kaylseyum]

Hey all, this is actually my second post since my mother-in-law's (MIL) ALS diagnosis earlier this month. This diagnosis, as you all know, is devastating. On top of it all, her housing situation is not ideal and we are trying to figure out the best option for where to move her...


She currently lives in a house with many stairs, a puppy, and with her "less than nice" husband who has said that he "just wants his life back." Yeah, don't we all. So, that leaves my fiance and I as my future MIL's only support (I call her "MIL" for ease and lazy typing more than anything). She wants to move out (but they will stayed married so she can keep insurance) and we want to help her in whatever way we can. My hubby-to-be has severe dyslexia so his ability to navigate the convoluted world of healthcare and insurance, taking notes, keeping dates, names and phone numbers straight, etc is minimal, so it is more me than anyone. I would love to be able to devote 100% to helping her, but I am a nursing student in an accelerated entry-level Master's program (hard to explain but the best I can do is to tell you all that it is two years of school condensed into 11 months followed by another year and a half for the Master in Nursing portion). Uhh, I digress.

She had bulbar onset. As of now, her symptoms are minimal to no speech, lots of weight loss (mostly from not eating due to difficulty swallowing and depression). Her muscles are only showing early stages of ALS (the LMN portion), but she has two injured shoulders (one is torn), a bad hip and a bad knee (all on the same side). So she has some difficulty walking, has fallen a couple times (really worries me!), but is kind of stubborn (!) and not wanting any walking assistance devices yet except a knee brace and the occasional cane use...

Anyway, we are trying to figure out the best housing option for her. We are on the path to getting her SSD so that she no longer has to be dependent on her husband's income, but our house is too small for her to live with us and she has said that she doesn't want to live in "an old folks home."

I am wondering if you all think it is plausible for her to live alone? If so, how long? Will she eventually need one-on-one 24/7 nursing care? At what point? I am still kind of confused by the timeline since everyone is so different, and what things can be done by loved ones vs. an outside caregiver vs. a nurse's aid vs a skilled nurse? I am feeling very lost with all this which is completely out of my element as I am usually the one who everyone goes to for answers and support and research.

 

[sadiemae]

Living alone for the long term is not an option How old is your MIL? Would she be open to having a roommate that would live there for room and board in exchange for helping to care for her, maybe a student. If she will be getting SSDI, It will be six months before she gets a check. If a roommate is out of the question, she is going to need a care team, people that will stop in to help her for an hour, 5 or 6 times a day.

 

[cervus]

I agree with Sadiemae's post but would think that even more time would be required. It gets to be a 24 hour care program. She would definitely not fare on her own. Yasmin.

 

[sadiemae]

Agreed, My husband could survive 12 hours alone, with good and drinks and per bottle by his side, but I would be a nervous wreck. He is unable to get out of bed, which is a good thing. Falls are the biggest danger of living alone with ALS. Also, is her puppy going with her.

 

[momap53]

Stubbornness seems to be a trait many of us PALS share

Please encourage her to use assistive devices. Falls can be fatal or cause severe disability that we're unable to recover from. They can result in increased disability long before Lou comes into play.

At some point she will need a PWC, with a need for wider doorways, and thresholds, and rooms that will accommodate it. They can be quite large, mine weighs 414 pounds. She'll also need room to accommodate a Hoyer Lift, and a roll in shower. She may be unable to do independent transfers for toileting.

With her swallowing issues and weight loss, one of the first recommendations that will be made is for a PEG to be placed. She may need someone to prepare and administer the tube feedings for her if her hands and arms are affected. Dressing and all ADLs will be compromised as limbs become involved.

I would not want to be living alone. I'm so grateful that my daughter was able to join me.
There's just no telling how fast any losses will come on. Best to prepare from the start so that you're not caught off guard.

 

[kaylseyum]

Thank you all so much for your input, everyone. I had a feeling that her living alone would not be a viable option. We are planning to eventually live with her once our lease is up but that isn't for 6 months and the rate things are going, we want her out of her current house YESTERDAY. Our home is only about 900 square feet. There's no way she could fit in our home. I've thought about asking our landlords to get out early. If this isn't a reasonable excuse I don't know what is! The issue is that she also probably won't get her SSDI until then, and there's no way for us To afford the size of house we will need for the three of us. Plus, we are in no position to buy (I'm a student, my fiance is just about to start a new job), so all of the amenities (roll in shower, wider doorways, etc) you mentioned will have to already be in whatever we rent. She really doesn't want to love in an apartment but unless we miraculously find a house to rent with these specs already in place, an ADA accessible apartment might be our only option?

Yes, she won't give the two-year old lab puppy up so he will be going with her wherever she goes. I don't blame her at all for this, it just seems too dangerous to have a big, untrained puppy around. He's already been the cause of two of her falls, through no fault of his own except being a puppy! We would take him but "no dogs allowed" in the current home. We are trying to get him into some obedience school but time is lacking these days...

It's starting to look like we might just have to find a way for her current place to work for at least the next 6 months...I can't see any other option. Our current home is too small, even if we get out of our lease early, with her SSDI being approved yet, we wot be able to afford a big enough place for the three of us and the option of getting her a love in roommate (which I love so thank you!), is also not financially possible, right now at least.

Would an ADA apartment/home suffice for the needs of a PALS? Or is it even more specialized?

 

[kaylseyum]

Sorry these posts are so long! Writing it all out helps me sort out the issues and possible solutions so much better than spinning these thoughts in my head. You all are such a wealth of knowledge and support, thank you!

 

[momap53]

Accessible can be interpreted so many ways. We've found that even in the hospital and medical office building where we go to Clinic the accessibility varies from one restroom to the next. One bathroom has a lovely scanner, just wave your hand and the door opens, great for someone in a power chair (if you're able to wave your hand) You could rollup to the sink just fine and the dispensers and water were automatic. The one handicapped stall was adequately equipped with hand rails and an automatic flusher, but there was no way to get into it with a small transfer chair and attendant much less a power chair. The only way to know for sure is to physically check it out. Take your measuring tape with you.

 

[HelenL]

I would consider leaving her where she is for 6 months, perhaps with a student/caregiver in an extra room so hubby can "have his life back"... Obviously not if there's any danger to her from him. If she's in a multi-bedroom home, accommodations can possibly be made in the short term for toileting/stairs, while you focus on finding the right place for the 3 of you (and puppy too). For insyance, I just this year stopped using the stairs/bathrooms and now use a pwc, slideboard and commode. You may have a little time for planning, depending on her progression. But you also need to address if she's going to have a Peg if she's already having issues eating.

See if your state has any programs to help keep disabled folks in their homes. For instance here in Mass., there's multiple programs I've applied for to help install a handicap bathroom, some from a grant, some from a no-interest, no payment loan program that puts a lien on the house. If she moves out of her house, will hubby buy her out so she can buy something? Probably not from the sounds of it, but their house is half hers...

Good luck with everything, and be sure to see if ALSA or MDA have any recommendations... at least talk to one of their social workers regarding her situation.

 

[Katie C]

Suggestion... if you go the route of a live in assistant (which I think is a great option. As you've started to realize, living alone is just not an option, because changes happen quickly), perhaps you could pay her a little extra to start putting some manners on the pup? Labs are big goofy pups until 3 or 4 but they thrive on training and are pretty easy to exercise with a tennis ball and some space to to toss it! If you want to pm me I can send you some info on clicker training, which your MIL might actually be good for her too... keep her mentally engaged.

 

[kaylseyum]

Great suggestions, all! I think clicker training sounds like a great idea I'd love the info! I can't begin to express how helpful everyone has been! I went to an ALSA support group last month alone (before her official diagnosis) just to see what it was like (hoping for the best, preparing for the worst). Everyone was super nice and I am planning to call the head woman in charge to talk about options and take my MIL to the next one with my fiance as well. Because she is bulbar onset, I really want to look into what AAC devices they have in the loan locker. I am also wanting to look into maybe getting her dog trained as a guide/companion dog. Has anyone gone through this process? What was it like? Like I said, I wish I could devote 100% of my time to her care...there seems to be so much (too much) to do, especially as a student, commuting 3 1/2 to 4 hours a day...


Yeah, they live in a multi-level home, and her husband is willing to set up the downstairs for her for the interim. He is very resistant to having a caregiver in the home (why is beyond me since, according to her, he complains so much about how much he has to help her...). I think she will be relatively safe for the time being, at least in the short term, but I honestly worry about her living there. She told me that she fell down, sent him a text message that she had fallen (she can no longer speak), and it took him AN HOUR to come to her...that is just appalling to me. I am really hoping there is more to this story (he didn't have his phone on him, etc, etc). I doubt he will buy her out of the home, he owned it before they got married... At one point he offered to pay rent for her to live somewhere else, but has since revoked that offer. Maybe I will ask him again (I really try to avoid conversing with him but I don't think I can avoid it any longer).

I think the PWC, slideboard and commode (once needed) sounds like a great option! Thanks for the suggestion! At what point would you recommend getting a walker? PWC? Etc. I have heard it echoed again and again to get it before you need it...but how far in advance? I don't want to overwhelm her but also want to make sure that she has everything she will need available as soon as she needs it. PALS and CALS, how do you facilitate conversations around this? I feel like she would benefit from a walker (and maybe even a wheelchair) sooner rather than later, but I have a hard enough time just getting her to use her cane correctly. Her provider brought of the peg option, but as of now her weight has stabilized (hopefully it will stay that way for awhile!).

 

[tmackenzie]

with my mom, she was able to walk just fine. With the huge amount of weight she lost, she was actually walking faster than before. She too has the bulbar palsy. She can barely talk and barely eat/drink at times. They did the PEG right away and now tell us not to allow her to walk without a walker. When she tries to go grocery shopping, she must use a wheel chair even though sometiems she does not want to. Just the walking alone labors her breathing, and she feels exhausted. I definately agree with the others, get her PEG right away. She can still eat solid food, but if it's not enough, the PEG with supplement. I am learning that things can change day to day. I was counting on months, maybe a year or two, but now I am grateful I have her today. The best advice I received on here was get the equipment you will need now. With all the changes coming your way, it's best to be prepared.

 

[notme]

You've really answered your own question, in a way. She won't use assistive devices and she's already falling. You are a nursing student. The answer seems pretty clear that she's going to need some help, sooner rather than later.

First, if she decides to live alone, get life alert or something similar with constant monitoring available. Falling and not being able to get back up are a real possibility.

I can't get up if I fall, and I'm not as frail as she sounds, I don't have the arm strength to pull myself up. I wouldn't live alone on a bet.

Has she considered a PEG so she can keep some weight on? There are all kinds of communication means available for PALS with no voice of their own any longer.

I'm sorry you are all going through this. Perhaps her doc can explain better to her the hazards of falling. Perhaps you might be able to find a live-in CNA if she's agreeable to that. Much depends on her wishes, though, if she's of sound mind.

 

[TeamDom]

I understand your situation. My father's girlfriend of 10 years kicked him out because she couldn't deal so my sister had to take family medical leave and live with him in a handicap accessible hotel room for 2 months! (My house isn't accessible either.) Thankfully, he has the monetary resources and he's a veteran so the VA can provide many things for his needs. He is now living in an independent living facility (very expensive) and has a caregiver with him 24/7. It's hard to find truly handicapped accessible apartments in the county we live in. It's so true what Deb said - Accessible can be interpreted in so many ways.

It's hard when a patient is stubborn. My dad fell a couple times so my sister bought a walker and said, "look what I got you!" What choice did we have? He actually started using it and felt so much more secure. Maybe you could try that? The worse that could happen is that she doesn't use it but at least you tried. Falls can cause so many other issues and can be fatal.

Maybe you can call the local ALS chapter in her area and ask them if there's a social worker that can help with your MIL's situation. I agree that she needs to get out of her current home and in a safe, accessible home/apartment sooner than later.

Also, yes, she will eventually need someone with her 24/7. You can start off with a CNA, but eventually there are complicated medical needs that only a skilled medical professional like an LPN or RN can provide. We just hired an LPN and a recent RN grad. Do background checks if you go the private route. We've used craigslist and care.com to find help.

Hope this helps!

Karen

 

[NotALS!]

You really need to locate an ALS treatment center near you. I'm lucky to have one only 1/2 hour away that has a large inpatient care facility with 180 beds. I would prefer to die at home but if my husband can't handle all the responsibility, I know I have a place to go. They also have social workers that can give financial advice so your family doesn't have to lose everything because of the illness. I am a young and still have kids to send to college.

The puppy has to go. I have a little papillon and I can't even take care of her. It breaks my heart!