I'm at a loss.

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Ladyfayone68 Asked October 2023

I'm at a loss.

My mom was diagnosed with Dementia (moderate, but I question that) and colon cancer final stage, and shes bedbound, and is fighting everyone tooth and nail with her care,for one thing she refuses to believe she is ill but Hospice is involved because she has less than 6 months to live, and everytime nurses show up to clean/bathe her,she refuses it,sometimes profanely, there are times she won't even let me touch her and just lays in her own filth for days, yes I had a Cognitive Eval done on her and the Hospital said out of 30 she was 15 and was able to make her own decisions, that was over a month ago, I'm at my wits end, I try to keep her clean as possible, and even mentioned long term care,...well she either blows up or agrees, it depends on her mood, and whats worse she already ran off a in home care agency cause she was difficult and they turned her in to APS (Adult Protective Services) for self neglect, and they are still involved trying to get her in a home, but getting my mom to do an assesment for Medicaid is proving even more difficult, it was suggested that I try to get Guardianship, (medical) which is fine, but I fear that she may be given the "all clear" once again, I'm just at a loss as what to do, the rest of her family could care less and I'm an only child so I have no siblings to turn to.

Alzheimer's & Dementia Dementia Behaviors Home Care Hospice Refusing Care

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score 2 · Answer 1

As you might guess, I’m having trouble posting – double or nothing!

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score 2 · Answer 2

Just about calming meds, and I’m not an expert, just experienced. Meds can be ‘slow release’ or not. If they are ‘slow release’ and you crush them up, the full force hits immediately and this isn’t good. If they aren’t ‘slow release’, you can just crush them up and put them into something strong tasting. Then taking them is the same as swallowing the tablet whole. A common example is ‘osteo-panadol’. It’s slow release over 8 hours, but the paracetamol is identical to the ‘one-hit’ Tylenol tablets (except for the price and if the mgs of paracetamol are the same). It always says if they are ‘slow release’ on the packet.

So it might be worth checking for calming meds that aren’t slow release, and putting them in her food.

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score 0 · Answer 3

Just about calming meds, and I’m not an expert, just experienced. Meds can be ‘slow release’ or not. If they are ‘slow release’ and you crush them up, the full force hits immediately and this isn’t good. If they aren’t ‘slow release’, you can just crush them up and put them into something strong tasting. Then taking them is the same as swallowing the tablet whole. A common example is ‘osteo-panadol’. It’s slow release over 8 hours, but the paracetamol is identical to the ‘one-hit’ Tylenol tablets (except for the price and if the mgs of paracetamol are the same). It always says if they are ‘slow release’ on the packet.

So it might be worth checking for calming meds that aren’t slow release, and putting them in her food.

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score 0 · Answer 4

Just about calming meds, and I’m not an expert, just experienced. Meds can be ‘slow release’ or not. If they are ‘slow release’ and you crush them up, the full force hits immediately and this can be a problem. If they aren’t ‘slow release’, you can just crush them up and put them into something strong tasting. Then taking them is the same as swallowing the tablet whole. A common example is ‘osteo-panadol’. It’s slow release over 8 hours, but the paracetamol is identical to the ‘one-hit’ Tylenol tablets (except for the price and if the mgs of paracetamol are the same). It always says if they are ‘slow release’ on the packet.

So it might be worth checking for calming meds that aren’t slow release, and putting them in her food.

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score 0 · Answer 5

ooo

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score 2 · Answer 6

I’m truly baffled why your mother is not being given meds to calm her anxiety. It’s a standard part of hospice care and would truly be a kindness to her. I’d be demanding this daily

Helpful Answer (2)

I thought of that too and assumed hospice was trying , but maybe the mother is refusing . My mother with dementia still knew her pills and wouldn’t take one that looked new or different .

(1)

score 1 · Answer 7

I looked up obtaining guardianship, and it can be very expensive depending on the state where you live. Where my aunt is, it's very expensive. Someone had suggested it to try and get a loved on into a facility, since they won't go willingly. There's also no guarantee that the judge would side with you to get them into a facility. It's a long lengthy process.

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score 5 · Answer 8

Since hospice is involved, why on earth would they not have put her on calming meds immediately? That makes no sense. Allowing her to lie in her own filth for days is neglect.

A score of 15 on a MoCA test indicates moderate dementia......under 10 indicates severe dementia. Your mother cannot be left alone at all AND is not able to make sound decisions for herself!

Your profile says you work long shifts full time. Who's caring for mom while you're working?

Get her calmed down significantly with medication and THEN get her assessed for Medicaid. If you have POA, you can place her against her wishes, with a diagnosis of dementia, which she has.

Good luck.

Helpful Answer (5)

My Step-dad is with her all the time, but he cannot give her the proper care as hes nearly 80,uses a walker, he makes sure she eats,drinks,gets her meds, and yeah, its a crap situation, no thanks to the person in the hospital who did the MoCA and deemed her capable to make decisions, trust me I'm NOT happy, I'm doing everything, Hospice is trying their best,but when she can call the shots and say when they can come to the house and care for her (then she'll complain no ones doing their job and caring for her)and usually she will tell them "no" it makes it difficult for everyone,I have told her if you want the care quit shutting Hospice down, and of course she tells me "I don't do that" *sigh* thats the Dementia, so...I'm about to do the guardianship and if it makes her mad, well I can't help that, I also can't have her making decisions that aren't healthy..am I wrong?

(2)

score 1 · Answer 9

Does your mother live with you?
Or
Do you live with your mother?

If your mother lives with you APS needs to assist you in finding placement for her; she is diagnosed.

If you live with her you need to give over her care to the State since you are in no control of her, and by allowing her to be in her own filth while you live with her or her with you may be considered neglect. As there is already a case opened by APS you need to participate with them in getting Mom into care and medicated.

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I'm staying w/her and my Stepdad, unfortunately the State of Oregon doesn't work that way APS is involved cause she has been turned in for self neglect, they just put it on my lap

(1)

score 2 · Answer 10

Ask the Hospice Nurse or her doctor about anxiety meds.

Helpful Answer (2)

They tried that, my mom won't take them

(1)

score 2 · Answer 11

I’m so sorry that you are going through this. I hope that you will be able to find a viable solution soon. I’m sure that you are completely overwhelmed and exhausted.

What happened when APS came out?

Wishing you peace.

Helpful Answer (2)

APS in my state (Oregon) is garbage, they put it all on me,so I'm just doin what I can

(1)

score 1 · Answer 12

just hang tight… keep a journal.. ( ya, like I do 😕)

do your best….

Adult wipes… get areas clean fast… maybe not as you’d like… better than nothing..

get meds evaluated…
calming tea, etc…

she is scared and frustrated… she knows she’s not as good as she used to be… love her for who she is…
Reassure her.

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score 1 · Answer 13

I'm certainly not in your situation, however, my parent can be extremely difficult covertly. He triangulates and as much as he tells me he loves me, he can throw me under a bus in a New York minute.
I had to make the decision between my sibling's ranting and my parent's need to rant and control, that I'm first. My tactic is to answer both of them simply, directly, and without reservation as to what I will and will not put up with.
I know you said your mother has dementia, however, you have some personal decisions to make concerning your own mental health and well being. From what you said, your mother needs more help than you can provide for her. AND - with APS being involved, there's a legal aspect that is no longer within your control. Acceptance is key in your situation and it seems to be what's needed. What you may want to do, is to speak to an attorney and find out EXACTLY what can be done. As far as your mother's behavior, there's nothing you can do about that except to be simple and direct (nicely of course). But if she's been given only 6 months, it may surprise you that none of this will even matter within the coming weeks/months as her situation will change and can do so quickly.
Try also getting some support and seek out some groups in your area for aging/care giving. That will also help more than you know.
Love and Luck,
Tired62

Helpful Answer (1)

Yeah my mental/overall health, this whole thing is taking its toll on me, and I'm no spring chicken, I've jumped through so many hoops, trying to care for her, do right by her, and getting nowhere, I have Epilepsy,High BP both of which I do take med's for, but even med's have their limits and thats what I'm afraid of

(2)

score 1 · Answer 14

What a difficult situation. I’m so sorry for you. I don’t know much about guardianship , but some other members do. There is one in particular who answers questions frequently about this . So keep checking back.

You already have APS involved. I don’t know if your local Agency of Aging would be able to do anything more but it could be worth a try . Hopefully others will have ideas .

I doubt she would be going to the hospital since she is on hospice. But if she does, tell them the situation . Maybe they can help you get mom placed in a facility .

Good luck .

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I'm at a loss.

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