Change of living arrangements

cog123

Hi all, first time posting on one of these discussion boards but hoping for some help to support my partner as she navigate’s her grandmother’s dementia. Grandma (in her late 80s) has had several strokes which have accelerated dementia symptoms. Until recently she had been able to live somewhat independently in her own home but a couple of falls and micro-strokes have since occurred and she’s been in and out of the hospital. The family has not been in agreement on how to handle her long-term care and for a while were using a non-medical live-in caregiver to help with daily tasks so that grandma could stay in her familiar environment. Recently though she’s had another bad fall and her children (my partner’s aunts, uncles, and mother) decided to move grandma into a rehab and nursing facility. They say it’s just for a few months but the situation seems like it may be indefinite. My partner is still navigating the transition as it’s been quite stressful for everyone involved. She’s really struggling when grandma calls her and asks to go home. Grandma isn’t coherent enough to remember what she did yesterday or who she talked to, but she knows she’s not at home and is feeling very out-of-sorts with her new living arrangement. So what do you tell your loved one when they ask to “go home?” I know generally you’re supposed to meet them on their level and not correct them/share upsetting details but I don’t know how we can straight up lie to her and tell her something we don’t know the answer to. If we tell her she’s going home “later,” she’s still able to understand what that means and it doesn’t seem fair to promise her something we can’t fulfill. Second bonus question, how do you deal with a circumstance where you don’t necessarily agree with your family’s choices for care but don’t have any actual control over it? My partner doesn’t think the facility where grandma is living meets her needs, but grandma’s children are making those decisions and they don’t exactly have the best ways of communicating the reasoning behind their actions.

SusanB-dil

Hi cog123 - welcome to 'here', but sorry for the reason.

MIL has vasc and alz, the most common duality. She's had one really major stroke, and the doctor said another is probably on the horizon due to her condition. The vascular does sometimes cause TIA's (mini-strokes), and yes, after these happen, there is another decline in already decreasing cognition.

Grandma's living arrangement would depend the most on who holds the POA. Unfortunately, even if you don't agree, that's who you would have to defer to. Sorry they aren't communicating well, as to why she is in that particular facility, but you may just have to let it go and deal with it as-is. Your partner can still visit and see how she's doing, though. However, depending on how long she's been in her new place, you may have to 'not visit' for a period of time. Let her get adjusted. A lot of times, that actually helps, although other than wanting to go home (not uncommon), it does sound like she is pretty much adjusting.

Most of us here call it 'fiblets', as far as telling her to having to stay there long-term. "The doctor says you can't go home quite yet until they are sure you are doing better." (and actually, that's a truth). Repeat as necessary.

Sorry your family is dealing with 'this'.

terei

I agree with SusanB….just blame any placement on ‘doctor’s orders’….repeat, repeat, repeat

Emily 123

Hello,

It’s hard to adjust to what the disease requires. The goal here is to tell grandma something soothing in the moment, since she’s unlikely to recall information for very long. Fibbing, or not having answers, might make your partner feel bad, but (eye on the prize) telling grandma something that makes sense to her, no matter how briefly, will help her.
Usually people won’t feel comfortable fibbing at first. It may help to understand that, each time grandma asks, she likely thinks it’s the first time she’s done so. The frequent requests may be triggered by looking around and seeing an unfamiliar environment rather than being able to retain the information and trying to persistently arrange for a change.

As you say, the future is very much up in the air. It may be that she stays at a facility. You could tell her that she had a fall and she’s rehabbing to get stronger, and it’s up to the doctor. That’s truthful and open-ended.

Without knowing the whole situation or why your partner thinks the facility isn’t a good fit it’s hard to weigh in. Usually there’s a lot of angst around placement, and people do their best with the options available to them. Anything that seems like second-guessing might not be well received, but an offer of support and help will be noted, and sometimes a new person to vent to is very welcome, and she might get more backstory then.
If her grandmother discharged from the hospital to a rehab, then there’s often a limited amount of time in which to choose a facility… first choices may not have a room available. Our hospital discharge planner linked me to the Medicare website that rated local available rehab facilities and told me to choose within 48 hours. Too, family resources may dictate the facility--a place with an ok reputation but near to family who can visit might get chosen over a facility that’s not nearby but with a better reputation. A rehab facility is an intermediate step in the process where the patient is given intensive OT/PT to build up their strength and give everyone a better idea of how well they can function, as that will determine what level of care they’ll need when they leave rehab. It may be that once her grandmother has progressed with her rehab as much as she can, then decisions will be made regarding whether or not she’s a better candidate for memory care or skilled nursing,or going home with assistance in place (and if it’s skilled nursing, would they want to keep her where she is).

harshedbuzz

@cog123

Hi and welcome. I am sorry for the reason you are here, but pleased you found this place.

A couple of thoughts—

Why are you reaching out on behalf of your partner instead of her taking the initiative to ask questions and educate herself on best practices? She might be more comfortable with the decisions being made for her grandmother if she understood all of the ways it impacts those with the condition and the steps that need to be taken to ensure her safety. Spoiler alert— memory loss is just the tip of the iceberg. Has your partner done any reading on dementia? The 36-Hour-Day is a great comprehensive book that explains the progression and care needs associated with the disease.

Credit should be given to the sibling group who arranged for in-home care for any period of time. This is a lot more work for family members to make happen and one of the financially more costlier ways to provide the level of care needed for a PWD. Unfortunately, sometimes this kind of arrangement isn't sustainable— funding might be an issue, finding quality caregivers a challenge or perhaps grandmom needs to be in a place where care comes to her for the most part.

You mention "non-medical caregivers". This would be typical. Unless a PWD has some acute medical need like insulin monitoring or wound care, a companion-housekeeping type person provides the care. FWIW, most of us who were/are hands-on family caregivers have no medical training beyond OJT.

Another concept that might be in play in this situation is showtiming. This is when a PWD is able to temporarily hold it together enough to appear less impaired than their actual baseline. Often, this with-it-ness is reserved for doctors, family friends and second tier relatives such as your partner. This quirk of the disease can lead to a whole lot of frustration and discord in families.

You said: "I know generally you’re supposed to meet them on their level and not correct them/share upsetting details but I don’t know how we can straight up lie to her and tell her something we don’t know the answer to. If we tell her she’s going home “later,” she’s still able to understand what that means and it doesn’t seem fair to promise her something we can’t fulfill"

Honesty is over-rated in dementia. Saying the kinder thing in this kind of situation is always the right thing. That said, if your partner isn't a decision-maker in this scenario, it would be fine for her to state that she would like grandma to come home soon but that it isn't her decision to make. Rinse and repeat. Validation of grandma's feelings can help her process where she is now.

If the phone calls are upsetting or coming at inconvenient times, your partner can let them go to voicemail. Some PWD really abuse the phone because of their short-term memory issues and the lack of empathy/social filter that is typical of the disease. The POA might consider disappearing grandma's phone.

If the rehab/SNF stay came after a qualifying hospitalization, it could be that the POA is using this time to figure out next steps. It could be they may be trying to get her accepted into a AL/MCF which would be considerably less expensive than a SNF if paying out-of-pocket. If grandma is on Medicaid to fund her stay at the SNF, she may live in a state (like mine) where institutional Medicaid cannot be used for MC— only a SNF.

HB