Wrong care facility??

NUMber2 · February 10

My LO has always been overly sensitive and that seems to be getting worse as the disease progresses.

She can't hear so the caregivers speak loudly. (She tells me that they yell at her all of the time)

She's not always cognitively aware so the caregivers speak loudly to try to guide her. (She tells me that they yell at her all of the time)

She's in a supportive living (SL) environment, not staffed for people in her condition, so I'm guessing the caregivers might do some loud talking because she's draining. (She tells me that they yell at her all of the time)

I did put a camera in her living room for a week. The caregivers aren't as attentive as she needs/ desires, but they don't yell. Each caregiver's approach is different.

We want to move her to an AL facility that might offer more attentive care and more activities geared toward patients with dementia but they don't exist in my town. Our town offers: nice SL facilities and very expensive MC facilities.

She could move back to her home in SC near my brother to an AL facility but the same problems could exist there. All of her friends and her familiar surroundings are back there. She's 1000 miles away from her home, just so she can be by me. (Her request, not mine) And it isnt working for her here, on many levels.

She's going to HAVE to move regardless. I wish I had a crystal ball.

Marta · February 10

Hello and welcome. Wish you didn’t have to be here.

Your LO (is it your Mom?) likely needs a higher level of care. What stage would you say she is in, on the 7 stage model? If not familiar with stages, Google Tam Cummings to see where your loved one fits.

M1 · February 10

I think Marta is right, it's not necessarily that the facility is wrong, but she likely needs memory care rather than assisted living. This is pretty common, we all tend to overestimate our LO's level of functioning.

If you meet with the staff, definitely bring up the hearing issue. They should have a strategy for dealing with it, it can't be the first time. Keeping track of hearing aids in facilities is quite difficult.

Quilting brings calm · February 10

In my state, supportive living is the low income version of assisted living- and can include dementia care. Your state may differ.

I would suggest making a comparison list of what her SL provides vs what AL in your state or SC would provide. If there’s no real differences in services, then you might need to do a list of what MCs would provide.

There’s also a possibility that she’s being provided enough services but just isn’t capable of being content.

.

harshedbuzz · February 10

I agree that it's time for a move to an actual MCF ideally near the person who POA.

Over time familiar surrounds become unrecognizable to PWD; many a caregiver reports their loved one begging to go home while standing in the residence that's been home for decades. Home is more of a feeling of security and relief from confusion than a place. Over time, family and friends will drift away from PWD as they become less capable of maintaining their side of the relationship. At the end of the day, it's best for her if the POA can meet the ambulance as it pulls in when the PWD has a fall.

A crystal ball would be useful to us all but the dementia train only goes in one direction. There's an old saw here that by a time a family is willing to even consider AL, that ship has sailed and MC is needed.

I would pick MC for a number of reasons. Staff there should be trained and have experience in dementia-care. The design of the space and all activities will be dementia-informed to make the PWD feel capable in the space. And the staff will be people who have chosen dementia as their specialty rather than just being assigned there.

HB

Anonymousjpl123 · February 12

I can attest to others: by the time we considered AL my mom was close to needing MC. I gasped at the price tag (though I knew it was eventual, so chose an AL facility with an MC close to our price range). It’s definitely sticker shock. But SO worth it. I found my mom was lost and increasingly disoriented and disconnected in AL, which was a problem eventually. I also learned having her in an apartment with a part time aid was even more expensive than MC.

I can’t remember if your SL had memory care? If so, I would check it out - or maybe visit a few. when I went it was nothing like what I feared or expected - and I’m not even sure what I expected.

In terms of location, who has more time to visit and deal, who has POA, who needs to be close? That should drive the decision, not the facilities. I hope this helps.

NUMber2 · February 13

Brother has POA

I have more time, but it's killing me and my relationship with my husband.

Anonymousjpl123 · February 13

If your brother will take on the responsibility, she should move closer to him (will also make it so much easier if he has POA). You could also then switch her to memory care near him. You can do SO MUCH to help remotely, and by visiting when you can. I am so sorry you are going through this. I can honestly say I did and would have done as much as I’m doing now if my mom had stayed with SIL about 500 miles from me. Most important thing is that if she moves again, wherever it is, there is the right level of care for what she needs. That will make the difference for everyone

NUMber2 · February 13

https://alzconnected.org/discussion/comment/198101#Comment_198101

I'm almost there! I really hate spending any amount of time with her! I do so because I feel obligated and because I feel sorry for her. There's such a small part of me that remembers her with tenderness. It's all so very sad!!!

Anonymousjpl123 · February 15

@NUMber2 i totally get it. I have my mother near me now, and it is so hard in ways I can’t describe. It makes sense because I’m POA, but the truth is I would have felt just as helpful to support from a distance. It comes down being able to pitch in how YOU feel comfortable and in a way that makes the most sense. I feel guilty for not visiting more, being freaked out by her progression, that our family isn’t closer so she would have a wider network, etc etc. But the truth is making sure she is safe and cared for is love. If you have an obligation, that is it. There’s nothing you can do to change the disease, and making your life at all worse is NOT helpful. I hope this helps you and your family decide where she ends up.

NUMber2 · February 16

The place that my LO is at right now, could go for some new caregivers!!! They aren't nice and they certainly aren't caring for someone in my LO's condition!! We pay extra money, a great deal extra, for them to administer her meds. The caregiver tonight handed my LO her pill and just left her alone because my LO couldn't swallow the pill- it was too big- and that caregiver was too busy to stick around to help my mom. NOT COOL!!

My LO cut the pill in half to try to take it, but the caregiver just left her anyway. The caregiver said she couldn't help my LO because the facility isn't AL. (That lousy human doesn't even know what type of facility she works in. )

Wrong care facility??

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