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Hello All,
Im 26, froze my life in TX and drove 1,000mi to come stay with my Grandfather for what I planned 4 weeks. His caretakers said he hasn't been eating much, and he was declining. He was getting out of the hospital with COVID, and I was eager to spend the holidays with him, as this could be our last. I was thinking on getting a day job to help my mental, but I don't think he wants me here, or is it my anxiety?
My Grandfather is bed bound for maybe 5 years now, He lives by himself and still "mentally capable to make his own decisions," yet he's such a curmudgeon who refuses care left and right, mainly when it comes to changing him. He has vertigo, so turning to his right side is a pain.. and chooses how much he'd like to assist. Been let-go by every home care agency in town due to incompetent behavior, so we're low on care givers.
I know he's lonely, has a poor quality of life but I believe he also likes his alone time. Changing him has become a 2 person job, yet he's sleeping so so often we can only change him once a day. He's on antidepressants/anxiety, (I'm not and I was 6mo ago, last time I was here and vow'd I could stay with him). And I feel like I'm in his space.
He told me I have a calming presence and should "wait until things aren't in balance"? Yet, I'm "stupid and don't know what I'm doing".. I understand this is him and aging, but at what point do I stay and make sure he's not neglected or can I return back to my home? Just visit more often? If he wants to be in bed then so be, right?



Thanks in advance, rant over for now.

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Go home. Dont become grandpa's live in caregiver. You need to work and support yourself financially.

You are only 26. Are you willing to give up 5 or more years of your life taking care of him?
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Jennerator219 Dec 2022
I thought he was going downhill a bit faster to be honest, so I thought this may be it, but he seems to be back to normal now. I thought I was up for the challenge, but with the way he is - I don't think its worth it.. I have to remember that he got himself into this situation.. Thank you!
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I’m not sure he’s capable of making his own decisions, especially if he’s the one telling you that. He’s been bedbound for years and declining. Please leave and make tracks back home! If you stay, your life will be miserable. Oh, and when you get back to Texas, call hospice where he lives and ask for their evaluation. It might be very revealing.
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Jennerator219 Dec 2022
He recently got let go by his PCP bc she switched companies? So we are on the hunt for a new company, hopefully hear back today. He needs palliative care. Thank you for your response!
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Regarding the current situation..

I'm a stranger & so can view your situation (as you described it) without any emotional attachment. Hope you are OK if I am blunt..

The facts seem to be;
- Grandfather lives alone
- He is bed-bound
- He is very dependant on his support workers (or family) for all his care needs
- He cannot arrange his own care
- He refuses some care eg turning & changing
- He has insufficient 'staff' coming to look after him

So taking from that info - an elderly person, unable to self-care or arrange his own care staff is in real danger of neglect.

Thoughts?

Regarding your question "wait for normal programming" I am not sure I follow.

Do you mean awaiting Grandfather to stop declining? Or were you here for the final curtain, but it appears he still has more scenes left.. ?
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Jennerator219 Dec 2022
I wanted to be here for the final curtain, but he appears he still has more scenes left, yes. I'd love to spend time with him but he is not the grandfather I know. You can't really spend time with him. I wanted to come be of some assistance in the house, now not sure its really too necessary. The caretakers seem to have it under control, as guilty as I feel for them.
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Regarding whether to stay or go...

"but at what point do I stay and make sure he's not neglected or can I return back to my home?"

Question time: who, what, where, when, where?

Q1 Who is in charge of ensuring Grandfather has adequate care? Yourself?

If so, keep reading. If not, report Grandfather's condition to that person with authority for his care & leave.

Q2 What is his prognosis? Has he had a recent medical check? Eval for Palliative Care/Hospice? Refusing changing/rolling could be PAIN related. I would want that looked at. But, also is typical dementia behaviour - not understanding why changing/rolling is required.

Q3 Where will it be best for Grandfather to be cared for going forward? His home? Or moved into care? If moved,

Q4 When? ASAP? Or only if caregivers/staff fail to show?

Q5. Where? Where would he go if if there is insufficient care at home?
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Jennerator219 Dec 2022
To stay or go:

Q1: My cousin is POA, she's younger than I with her hands full so she asked me for assistance with him.

Q2: Hes just old and giving up. He has vertigo so changing him makes him nauseous. We're waiting to hear back from a new company with home health care, that itself has been difficult. He has no PCP as of right now.

Q3: we're lucky he went to the hospital a few weeks ago for treatment, but Im pretty sure that He wants to die in his bed. He refuses to go to a community, as beneficial it may be to him. Or he could get kicked out.

>> Is there a point to where he would legally have to leave his home?

Q4: I don't think he'd agree to go anywhere, he's pretty set on being at home. On days where there's no staff, those are the days I wish I was here.
Although, God sent me an DoorDash guy who's wife is now use to visiting him and helping feed..

Thankful for care.com and all you angels out there.
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If grandpa does not have a dementia diagnosis, a Scopolamine patch behind his ear can be of great help with chronic vertigo. My elderly mother suffered from very debilitating vertigo for a few years and the patch was the only real relief she got.....but it worsened her dementia so it had to be discontinued. It also causes dry mouth so Xylimelt mints are good relief for that situation. He'd need a doctor to prescribe the patches. Just a heads up.

Good luck to you
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Jennerator219 Dec 2022
As soon as we get him a PCP, I shall mention it. Thanks for that!
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Call Hospice and go Home .
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Jen,

Don’t call yourself stupid. You’re a sensitive young woman who cares about her grandfather.

I would call hospice as soon as possible. Do not feel obligated to do this job. Your grandfather will understand that you have a life to live. I am sure that he was glad to see you but your cousin called for your help not him.

Where are his children? Are they helping at all or making any sorts of arrangements for your grandfather?

Plans should be made according to his needs, not his wants.

Wishing you and your family all the best.
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Jennerator219 Dec 2022
I appreciate that! He was the one calling me stupid. Both of his children are passed away and his wife as well, unfortunately we're next in line.
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Your grandfather is 24/7 care. Because of him not being cooperative he needs to be in LTC (Longterm care). What you and your cousin need to do is contact APS. Have them evaluate the situation. Tell them you need to return home and cousin is too young for this kind of responsibility especially when the person is not cooperating. Yes, by doing this he will be placed in a NH. I would allow the State to become his guardian. This overrides a POA.

"Nothing will get an elder a one-way ticket to a nursing home faster than being stubborn". BurntCaregiver-Aging Care
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Jennerator219 Dec 2022
Outside evaluation, definitely. We should be getting a PCP soon.. You've basically nailed what my options boil down to.. thank you!
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Jenn, I would call a Hospice company as well, they may get eyes on Grandpa more quickly.

I think you should plan to return home soon. Grandpa is telling you to leave.
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Jennerator219 Dec 2022
We've been told he doesn't qualify for hospice bc he doesn't have a terminal illness, but hopefully when we get his new PCP in a few weeks, she can help with palliative care.

but yes, I hear him loud and clear now. :)
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You’re beyond a kind and caring granddaughter to be in such a difficult place with your grandfather. If he can’t or won’t tell you, I will, he’s blessed to have you. It’s a sad fact that his caregiving needs are past your abilities to sustainably provide, no one’s fault, just true. Call Adult Protective Services and report the situation, he will get care, it may not follow his exact demands but he will be cared for, and you will return to your life. A healthy, whole grandfather would want exactly that for you
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Jennerator219 Dec 2022
You're spot on with your words. I know he loves me. His caregivers are spoiled and burnt out; not a new thing to have new care come and go. But the search will remain, no matter what state I'm in, lol.
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Thank you so so much everyone, for your kind words, advice and encouragement!

He has caregivers, and things have been handled just fine for years. When I told him I was leaving, he stared off into space for a bit but ultimately long story short had a glow in his eyes like he was proud of me for finally standing up for myself. He asked me if I was a plod.. (the second term I've learned this week from him..that is the Grandpa I know :)
So yes, Im glad I came to check on things. I'm leaving tomorrow to be home by NYE. I know I'll make it back again to visit him again soon, with my siblings. But everything else is out of my control. Love from a far, and not grow resentment. I know he wants me to take care of myself, first.
Thanks again, everyone! <3
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