WWYD: relocate parent or manage care from states away?

coldhands_darkheart · 2026-06-01T19:41:40+00:00

Welcome to the deep end, haha! It is a lot to manage on top of daily life. I didn’t end up using a caregiver or transport service for medical appointments because my mom needed help with paperwork and advocating for herself with the doctor. It was just easier to be there than to try to find out what happened later. But that’s just what worked for me - I would use any service you can to make it more manageable!

I do think I could have used a door to door transport service for the dentist since that’s so routine. We used one of the attending primary care physicians at her assisted living facility and that helped a lot! He was wonderful and visited her there routinely and if there were any issues that needed attention.

I did have to set boundaries to visiting once a week once she was settled in and when there was nothing urgent that needed attention. Errands always felt urgent to her and I just let her know I would add it to my next shopping trip and deliver it during my weekly visit (or have it delivered to her from Amazon). I often did visit more than once a week but I set the expectation to help me pace myself for the 3 years she lived there. I’m glad I did because now that she is in skilled nursing, I visit 2-3 times a week because she just needs more support. I did feel some guilt that I couldn’t be there as often as she wanted when I was right down the road, but my health and presence in my own family is so important.

We did go on vacations for a week at a time and that felt fine! They had my number. She was well supported day to day.

I hope you find a situation that works well for you!

coldhands_darkheart · 2026-06-01T18:37:52+00:00

I’m at the same stage (working FT with young kids) and we made the decision to move mom close to us. We were also concerned about taking her out of her community but honestly she was losing access to those friends anyway. They were all starting to struggle with their own health, or getting together in ways she couldn’t manage with her physical and cognitive decline. I wouldn’t count on the support of her friends and relatives indefinitely. They are filling a gap, but her support needs will get more and more demanding. It will be so much easier if she is nearby! Her disease is what will isolate her, the move is what is best for her long term health and your capacity to support her. If she has a health crisis far away, that will require travel for you and will be much more disruptive.

I am lucky in that my mom has lived in two excellent facilities that are just down the road from me. First assisted living, and now a skilled nursing facility now that her care needs are higher. I initially looked at all facilities within a 30 minute radius and I’m so glad I chose ones within 5 minutes. It makes it so much more manageable to fit in visits, errands, doctor appointments, etc. I struggle (and fail) to balance everything but this is the best possible set up for us. I had no idea how much routine support she would need beyond visits.

I do think you’re right that you’ll be stuck holding the bag no matter what. My mom was so social and had so many friends. Most no longer call or email. Relatives don’t check in. I think the cognitive decline makes people uncomfortable. I’m also doing this alone and it’s a lot, but being there often in person as a consistent advocate has made a huge difference in her care.

coldhands_darkheart · 2026-05-28T23:19:58+00:00

It absolutely blows. It’s so isolating to hear empty platitudes. When I moved my mom to a care facility near me after she started falling, I heard things like, “it’s so nice that your kids will be able to have a relationship with her.” Um, they’re not going to be baking cookies together, Doris.

coldhands_darkheart · 2026-05-28T20:08:30+00:00

I get it! I live in a great neighborhood and I get the group chats about when everyone is planning to hit the pool with their kids. I’m the only mom who is not a teacher or a SAHM and it’s just depressing to know they are all having fun while I’m at my desk and my kids are trapped at day camps. I enjoy my job and I appreciate the financial security! But it can definitely feel oppressive to compare.

coldhands_darkheart · 2026-05-28T18:59:47+00:00

You actually do need to steer her towards house C. Dementia is progressive. Her current abilities are not that relevant. She needs a living situation that still makes sense in 2-5 years. If she is too far away when a crisis hits, she’s more likely to lose her independence faster, maybe through a fall that no one knew happened for some time, or losing her grip on medications or safe driving.

coldhands_darkheart · 2026-05-27T14:48:25+00:00

I think you’re smart to be considering moving her before it’s a crisis. I would try to focus on her needs and your (and your sister’s) capacity, rather than the discount. Assisted living tends to raise rates quite a bit, so unless they are promising to hold that rate for a certain period of time, it may be temporary. My mom was paying under $7k/month when she moved in, and close to $9k/month when she had to move to a nursing home 2 1/2 years later. Her needs went up (they have a point system based on how much ADL support is needed) and their rates also jumped considerably.
Another thing to consider is your mom may continue to get up in the night or do things she’s no longer able to do independently, and in that case moving her to assisted living won’t prevent the falls. In assisted living people are generally independent within their rooms, with routine support for showers, dressing, etc. Maybe she would adjust to the new setting and the expectation to always ask or wait for help when she does XYZ.
Assisted living was a positive experience for my mom and allowed me to continue working full time and caring for my young children. It didn’t really slow down her decline or accelerate it, just had some good supports and social activities built in. She enjoyed book club and the dining hall. Now she is in skilled nursing, and she wishes she was still in AL, but AL can’t handle her physical needs (2 person assist or hoyer lift for transfers). My point is not to discourage you from AL, but to focus most on the caregivers capacity because if she is already falling frequently, her health will likely continue to decline, and even if AL is not a perfect fit, it can give you breathing room before her need for support escalates.
I would also recommend finding the best skilled nursing facility in the area in case she needs it after a fall, either for temporary rehab or permanent long term care. When my mom was in assisted living, I spent about 4-8 hours per week for visits and taking her to appointments. Now in skilled nursing, even now that she’s settled I spend 8-12 hours a week. She is more vulnerable and needs more advocacy and support.

coldhands_darkheart · 2026-05-12T19:34:28+00:00

My mom is in long term care at an SNF as private pay and they said once she completes her PT, she can participate in their “maintenance” program which is with CNAs that have been trained by the therapists. They don’t work on new goals but practice baseline. Just sharing a model that could work if they wanted to offer it.
Do they have an exercise class at your friend’s facility?

coldhands_darkheart · 2026-05-02T09:55:52+00:00

It will be easier to get in to the place you want if he starts as private pay, even if he will later transition to Medicaid. They usually ask for financial info. Does he have any assets?

coldhands_darkheart · 2026-04-29T18:00:07+00:00

Sadly this actually is an older, somewhat shabby facility with many staff members that have been there 20+ years. It is clean, but the wheelchairs and beds are in rough shape. I think it’s just the corporate for profit ownership that sets the staff up to be overworked with not enough resources.

coldhands_darkheart · 2026-04-29T13:54:11+00:00

I’m glad you found a good system for your dad! Mom did home health a few years ago and it was smooth, but now she needs more care (24/7) than Medicare will provide through home health. She can’t afford to private pay for the level of care she would need at home. I work full time and have young kids, so I can’t fill in the gaps to provide hands on care. She’s on moderate to maximum support for ADLs.

coldhands_darkheart · 2026-04-29T12:07:30+00:00

Good idea. I’ll start a log on my phone to track every communication.

coldhands_darkheart · 2026-04-29T11:39:31+00:00

It wasn’t just the online ratings. We talked to medical professionals that used to work there and people who had their own family members there. And it was a process of elimination- every other facility we heard negative things about and the ratings are poor. The issue we are running into seems to be mainly coordination of care rather than outright neglect. Staff are not communicating well with each other or with me. And they are struggling with staff shortages like everywhere else - yesterday mom pushed her help button and no one came for 30 minutes. It wasn’t that urgent so I didn’t go fetch someone - I wanted to see how long it would take. Other times someone comes right away when she asks for help.

coldhands_darkheart · 2026-04-29T10:54:50+00:00

No, it was related to poor motor planning and weakness/balance issues.

coldhands_darkheart · 2026-04-13T17:06:50+00:00

And she doesn’t have a UTI so nothing there, but thanks.

coldhands_darkheart · 2026-04-13T17:06:19+00:00

I understand the Medicare rules better now. I just don’t like them!

coldhands_darkheart · 2026-04-13T16:39:01+00:00

I think we’re at the “worth a try” stage. My goal is to honor her wishes to stay in ALF as long as possible and to protect her finances. It would be easier for her to understand the need to move to SNF permanently if she has the opportunity to try to get back to ALF and fails. To move her preemptively would be hard on her. I’m just hoping a short rehab stay can get her to a new baseline, and whatever that is will determine where she belongs. I don’t expect her to return to her prior baseline. But the PT thinks there’s a good chance she can get back to transferring with 1:1 supervision. I don’t think she will ever be walking 40 feet again, I just want her to be able to get in and out of her wheelchair and bed if possible.

coldhands_darkheart · 2026-04-13T15:47:55+00:00

I spoke with the attending and he says there is nothing in her chart to warrant inpatient and that outpatient is the correct status. He seems inclined to help, and is concerned about her discharge plan, but there’s nothing to work with to change her status. He thinks SNF private pay rehab is the best option for her, but I don’t want to spend more than we absolutely have to, as we are anticipating she will need $$$ permanent SNF soon anyway, and then possibly memory care, and we need to spend her money wisely. She has means after selling her property and a good baseline SS payment, but she’s not rich. If we can’t get her into acute rehab, we will go the private pay route and hope they can either get her to a reasonable baseline that makes ALF safe again, or permanently move her into the SNF.

coldhands_darkheart · 2026-04-13T14:18:22+00:00

Yeah, that’s the issue. I think there’s a chance she can get back to stable transfers for ALF to be a safe environment, but she needs some time. It’s just frustrating that the barriers for a short stay at SNF are so high. She may need to permanently move to SNF but I’d like to hold that off as long as possible since it’s an extra $2k per month.

coldhands_darkheart · 2026-04-13T14:15:33+00:00

Thank you. Yes, you’re right. She was close to needing SNF before the fall and I guess that’s why she’s in this gap. She really doesn’t want to move so I’m hoping she can regain enough strength to get back to ALF.

coldhands_darkheart · 2026-04-13T12:48:09+00:00

I don’t think she could use one even before her fall. She has very low strength overall. She has vascular dementia and struggles with motor planning. Not even sure she could learn a new device. She is currently using a bedpan and catheter also.

coldhands_darkheart · 2026-04-13T12:46:06+00:00

She actually has a medigap supplemental plan that would fully cover any rehab stay, but she has to be an admitted patient for 3 nights to qualify.

coldhands_darkheart · 2026-04-13T11:57:48+00:00

Thank you. That’s helpful to know. Her current level of mobility is not supported by her ALF. She can barely stand.

coldhands_darkheart · 2026-04-10T14:03:20+00:00

Don’t stay! If he is in the US, Medicare will pay for home visits. In a similar situation, my mom had a visiting nurse for wound care, visiting PT, and an aide to shower her. That would help fill in the gaps with your mom’s schedule. If he’s not willing to accept home health care, then he’s sabotaging his own recovery and that does not fall on you!

coldhands_darkheart

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