Ha ha on the pants. A daughter I know was having lunch with her mother in the assisted living, and saw a woman walk by wearing her mother’s clothing. It happens a lot!
I hope they get power soon!
Question: are folks in assisted living allowed to leave at any time, even if they have dementia? An in-law’s 86 yo dad snuck out of the building (during COVID lockdown) with his bags at 4 am, walked two miles to a gas station and got a ride 30 miles to his adult child’s house. Did it again two days later. Was sent to ER for a psych eval and short stay, and they largely blew it off.
The facility has him in memory care for now, mainly so he can’t escape, but said they may let him return to AL when COVID restrictions loosen.
Now that he knows he can slip out the stairwell or a window, he’s not likely to stop trying to escape. It’s dangerous as all get out for him, but returning to live with his D is NOT an option. Trust me. He’s not safe to live alone, either. He refuses to pay the upcharge for memory care.
I’m trying to come up with suggestions and can’t wrap my head around this.
My parents are in MC now, but when they were in the AL side, there were residents that had bracelets or anklets that would set off an alarm if they went out any of the doors. This seems like the perfect situation for that.
Residents could leave AL when they wanted but they needed to sign out and let the front desk know where they were going.
As far as refusing to pay for the upcharge to MC, at some point the facility may require him to move, if they are unable to safely care for him in AL. Face it, no one “wants” to move to MC. We told my mom it was a short stay for rehab and that was a year ago. She has stopped asking now.
At my mom’s facility, the only section that had movement restrictions was in MC. If AL residents started to leave, they just had to sign out. If residents started to wander in the middle of the night, the families were asked to moved their loved ones to MC or to private hire a night time aide…
I need some advice, but it’s not actually about caring for parents, it’s about support for someone caring for a spouse.
My sister and husband are young, just turned 50 and live many states away. Right as COVID hit, my BIL began experiencing some very frightening symptoms. Long story short, he had Guilllain-Barre syndrome. He was hospitalized for over 5 weeks and nearly died. Because he has no health insurance (self employed and said he couldn’t afford the premiums), no rehab facility would take him after hospital discharge. He absolutely needs rehab as he is so weak he can’t get up, so you can imagine that situation. He is a very big guy, and sis is a tiny person. She is completely overwhelmed, has gotten a little help in, but they are financially a mess, so it’s very sporadic. Our families are not close-long story also. But I’m trying to help, have arranged for their mortgage to be paid for the near future, family members and various friends are sending gift cards for food and bills, etc. BIL was the primary breadwinner as sis stayed home to home school all the kids.
Sis is experiencing extreme stress and burnout related to caring for a very big husband who seems to be experiencing some cognitive deficits (very intelligent Ph.D who needs a sound mind to work), trying to get bills paid, kids educated, and attending to husband’s very extensive physical needs. A social worker is trying to help her with resources, etc. However, sis has started to resent DH, says they argue and scream at other, and the kids are freaking out. I know it’s illogical to be mad at someone for declining cognitively, as he certainly can’t help it. He was quite intelligent and their family is very traditional/conservative Christian and follow a very" “Dad is the main breadwinner/spiritual leader of the family type” of model. He took care of all the finances, even cooked dinner every night and sis handled the house and kids.She didn’t even know the most basic details about their mortgage. And now he cannot lead. I am worried about how this could play out.
What she really needs as well as the other things I mentioned is a support group. With COVID, I don’t think that’s happening, at least for in person support. Do any of you know of a really good message forum, one set up like CC that provides chat, links to helpful resources, etc. for young spouses of sick/disabled people? I think the chat alone with others going through what she is experiencing could really help.
I’m sure something like this exists, but my first attempts to find something with a great format with lots of traffic has not come up with anything. If anyone knows about such a place, it will be the folks here at CC.
Thanks in advance for any help.
@CountingDown my Dad is in Memory Care and it is locked. I am not sure what the rules are for assisted living and senior living. For him, Memory Care is about the same price as Assisted Living, because he has a smaller room, without a kitchen, etc… I have seen residents from AL or SL moved to Memory Care when they started wandered at all hours.
@Nrdsb4 oh, my gosh, I’m so sorry to hear about your sister and BIL. That’s heartbreaking. I have no advice, but I will keep the whole family in my prayers. It’s wonderful that everyone is pitching in to help.
I’m sorry @Nrdsb4 to hear about your sister. Can they get a Covid19 mortgage forebearance? That would leave any monies helping with the mortage to help with other things.
If they are now without income, any chance they qualify for Medicaid for his bills? Perhaps via SS-disability?
Maybe Bogleheads forum would have financial advice for this situation?
There are a lot of caregiver support groups for dementia, usually older people, but sometimes young and painful to read. Try looking for Facebook groups, too. I was on some Lewy Body FB groups when caring for my mother, as it was such a weird disease, it truly helped to hear about other’s stories.
We had a family member disabled in their 50s and it was a good thing is was the smaller woman and not the larger man, as he cared for her for decades, but she could not have helped him the same way. Scary to be faced with that.
@somemom, thanks. She has applied for some kind of mortgage help, but was told her file would be evaluated in August (inundated with COVID-affected folks).
She said they were not eligible for Medicaid (guessing because of the asset of the home)?
She is on a FB group for G-B patients/families, but that’s not anonymous, and I think it would benefit her to be able to blow off steam with others without compromising her or her DH’s privacy.
They are sort of in a weird situation, with them being on the young side to be reaching out.
A neighbor/friend had G-B last year. She spent a few weeks in the hospital but is in very good shape now. Her husband was the primary breadwinner so they did not have the same financial concerns. But, it is a scary syndrome that seemed to come out of nowhere. Best of luck to the family!
@Nrdsb4, what a difficult situation with your sister and her husband! Has she found the website, https://dailycaring.com/ ? They have many helpful articles and resources, including links for online support groups https://dailycaring.com/category/caregiver-wellness/support-groups/
@Nrdsb4 so sorry to hear this. My aunt had GB and I know another young person in our town who had it. As you know, it can take a long time to recover from - possibly a year or more.
If he is also affected cognitively, that is another complicating issue. I would really hope she can find a person or therapist who can help her navigate that because it is not easy to live with, even if you know objectively that the person cannot help his behavior.
I don’t know of any groups I am sure you googled yourself. Does their church offer any resources?
He desperately needs rehab and home care, but with no insurance, sister says they just can’t cover it. This is the frustrating part of insurance being tied to employment.
I’ve suggested therapy- I get the “I can barely pay my utility bills, there’s no money for therapy.” Can’t really argue with that.
Church might be a resource for them.
I’m worried that he may never really recover after missing the boat on early and aggressive rehab. I’m helping where I can, but I can’t finance everything they need.
I suggested Go Fund Me, but they utilized that when their son was in a bad accident and needed medical care, so she feels the well has probably run dry.
@Nrdsb4 can you tell us what state? I assume no Medicaid expansion there?
GA
Ugh, I KNOW how hard it is to be self-employed (we’ve been doing it for 21 years as of this month), but we did everything we had to in order to have health insurance (even during the Great Recession), including borrowing from our home equity line of credit. We’ve told our adult kids they cannot live here without paying for health insurance. How can you have a family and not get health insurance? 
I know it’s too late in this case, but we have to get this lesson through to our kids.
@CountingDown, in normal times, assisted living residents can come and go. Doors are usually locked at 8 or 9pm but you can still get back in by pressing a button to summon staff.
With COVID residents are more restricted. At the facility I am familiar with, they can walk around on the grounds but if they go out with family, they are quaratined for 14 days.
Wandering is the main reason for memory care. A 4 am trip out would be concerning. There are many people in assisted living who have dementia, but if they don’t wander, they tend to stay in AL at the facility I know well.
It is true that often MC can cost the same as AL since the rooms are small. I would imagine that the in-law’s dad will be required to be in memory care now that this has happened. The gizmo suggested by @surfcity sounds interesting…
I hate to say it but liability concerns tend to drive the facility administrators moving folks to MC, not so much the need for services. At least that’s my view.
Wandering, frequent falls, and sometimes stress on staff (for instance an AL resident who has trouble being alone and constantly visits staff offices)- all tend to land residents in MC. The 4am factor is really important.
@Nrdsb4 I would live on the streets before letting anyone in my family go without health insurance. I don’t want to say anymore on that except that I hope at some point this story can be shared so people understand the consequences.
I assume Georgia does not have expanded Medicaid. In our state, assets are not counted.
I assume he also didn’t pay for disability insurance, which rescued us when my husband had a stroke.
I wonder if you could access help from students in a PT or OT department (avoid those who focus on sports related therapy, perhaps). Or even a wellness type center. A friend of mine runs one and students need people to practice on, for a low fee or no charge. Ditto chiropractors, acupuncurists, a variety of practitioners. PT would be the priority.
Very sorry for the situation. Does he have a neurologist? Do they give any estimated time for recovery? Do they have an suggestions for resources? This would be a specialized PT: does the neuro or the FB group have a referral to someone who is good with GB? Can you call a rehab and get a name?
If someone could give you a plan, maybe you could carry some of it out at home. Or with a personal trainer. You could pay privately for a PT evaluation, at the rehab or elsewhere, by an experienced person, and then do exercises at home, with or without a student PT.
One of my kids had a brain injury and although PT was covered, to be honest, we did most therapy at home and had to be creative to customize. We did purchase some equipment, not expensive in our case.
@Nrdsb4, do take care of yourself and your family’s needs, too. I’m so sorry.
Georgia didn’t approve Medicaid expansion. The rules for Medicaid eligibility are, shall we say, draconian.
My brother was diagnosed with stage 4b inoperable cancer, was approved for SS disability benefits within six weeks under Compassionate Allowance, and still didn’t qualify. No income, no medical coverage. His treatment was done as charity until Medicare kicked in 24 months after SSDI approval.
Among my family and friends in that state, if you don’t have coverage, you beg a doctor for charity.
We have also always insisted my kids and H and I always have good health insurance. It’s a challenge and a mess with our US healthcare system as it is, but provides options and our family has been very fortunate we could always see a healthcare provider and get the treatments recommended.
We have a friend who got Gillian-Barre diagnosed after several incorrect diagnoses. He was under 60 and working full time. Years later, his thinking still isn’t as sharp and clear as it was prior to GB; his wife notices the difference He did take some time off from his job as a grade school teacher—unfortunately he was still providing varying amounts of caregiving for his 90ish year old folks who live at home, so that stress hindered and continues to hinder his recovery.
Regardless of how unreasonable the premiums were, we’ve never gone without health insurance and hope we’ve impressed that upon our kids. But I’ve also wondered how people without our resources negotiate getting insurance (if you’re self-employed or unemployed) and then paying for it.