Grandparents health and cognition declining, need advice on how to get assistance?

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My grandparents are 85 and 86. My grandmother receives SSI and Medicare my grandfather is an Army veteran and receives some retirement from the state and Medicare. They both have dementia, grandmother has had it longer and has taken meds to help with the symptoms (Aricept) but now my grandfather is showing symptoms of dementia/confusion and it progressing very fast. They both have health issues (high blood pressure, diabetes, anemia, heart disease, etc.) and have to take medication and of course watch their diet. With this last instance my grandmother went into the hospital (bilateral pulmonary embolism) my grandfather seemed to get even more confused and distracted (which we assume due to my grandmother being ill). My grandfather is the primary caregiver of my grandmother. She's not very mobile, he cooks, cleans, reminds her to take her meds, take her to her appointments, etc. I will help with appointments and go home every weekend so that he can have a break and clean, cook and run errands for them. Now I don't trust that he can care for the both of them as safely as he did just months ago.

In short, sorry for the long message; I want to know what can we do? I want to make sure they get their meals, medications are taken and managed, get to all their appointments, and of course are safe in their home (i.e. forgetting to leave the stove on, etc.). I live and work an hour and 1/2 away. My mom, aunt and uncle live close by but don't visit them as often or consistently. Do you know of any resources that I should seek out to get them assistance. I'm afraid they won't be able to live at home (alone) for much longer, safely with out having someone come in to assist them, me quitting my job and moving back home, or moving them into an assisted living facility (which is not a welcome option for either of them at this time).

Is there anyone else who has experienced this?

This is very overwhelming and I don't know what to do, but am afraid to do anything for fear of making a bad decision or making their situation even worse.

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Nielle: It's your parents' responsibility to take care of their parents, not yours, whichever set they belong to-maternal or paternal. God bless you for doing it, but really your parents MUST step up! Good grief, I can't imagine why they haven't!
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Nielle: By all means, DO NOT quit your job! That would be a mistake.
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I wish you luck working this all out. I can't add much to the helpful advice here, except to say there is a Community Medicaid program for which the financial and look-back requirements aren't as stringent. It covers some home care, not nursing home care.
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Moecam, I totally agree, except that I am pretty sure you cant get compensated after someone died. You have to get compensated while they are alive. Or they could make you beneficiary of a small insurance policy. But once they die the first claims to get paid are things like mortgages, taxes, probate cost, funeral expenses. If there is Medicaid there might not be anything left over to pay this granddaughter. My own family has had bad experience with this problem-- now my own dad is elderly, he knew about how the carers get "stuck" with all the work and none of the pay, so he went out (on his own, years ago) and bought a small policy and put my name on it. It is also true he could use that money for himself and I might never see it (perhaps if Medicaid eligible). But dont advise anyone to expect payment after death. And the family heirs arent likely to shell out money for past care either!
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The onus should be on your mom, aunt & uncle not you - it doesn't jump a generation so you need to actually back off & make them step forward otherwise you need to get the P.O.A. -
If you need to change or transfer your job to relocate but do so reluctantly & if there is a monitary penalty keep track of that so when your grandparent pass then those who didn't step up should not benefit from your sacrifice but rather you should be compensated - I know it's not about the money but also any sacrifice you make should be acknowledged
If there is little money left then you will not gain much but mom, auntie, uncka who couldn't get off their butts to help will/should not gain from your sacrifice
It sounds like you are a young caring person but you need to realize that you also have a commitment to yourself to have a life, have a family etc don't become the family doormat so take on these duties reluctantly & if you do then stand up to others who will question nearly everything by saying .. ' you don't like what I'm doing then you are welcome to take over otherwise BACK OFF'
Keep a stiff backbone & good luck
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Its wonderful that this granddaughter is so involved with her gp's. However agencies, financial institutions, doctors and home health people won't really legally be able to do anything for gp's at their granddaughter's request, unless she is POA for both Finances and Medical. Unfortunately the most the grandaughter can do is call that family meeting-- at which time she needs to clearly identify that it is not her responsibility. If the gp's explicitly were to name granddaughter to do all of this, then and only then can she make decisions on behalf of them. If other family will not step up, g-daughter could file for Guardianship (but that needs lawyer and money). Usually Guardianship is ordered to closer geographics than 90 mins away.
Another note, I am surprised the hospital d/c's the gmo home to be cared for by the gfa, if he is in dementia? Maybe it wasnt as far progressed at that point. But sounds like gfa is not good to drive a car either.
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I agree with a lot of the others on here. Time for a family meeting without the grandparents.
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I agree, this is your Mom's and siblings responsibility. You can help when you can. If you want to do some research, call Medicaid and ask what services you can get for GMom who is on Medicaid and maybe for Gdad. As a Vet he may get services thru them. Office aging in your county maybe able to help or give you info.
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Having been through this for both my parents...and eventually having to use my POA to force my Dad into a Memory Care Unit, and then force my Mom to have caregivers come into the home for her, once she was diagnosed with Alzheimer's and was not to drive anymore, to then, after Dad died, force Mom to put the house up for sale, and move up here by me, into Assisted Living, because she had no family in the town where she lived and was needing more caregivers to keep her safe at home.....this is my advice based on experience..... If your grandparents do not yet have all this end of life paperwork in place....Powers of Attorney for financial and for health care, Health Care directives, like whether or not they want to be coded and have certain things done to keep them alive if they go to the hospital....and also, their wills and funeral plans arranged....these need to be done if they are able to do so. You would need an elder care attorney to do these things. Yes, it will cost money, and it should be the grandparents money that is used. An eldercare attorney is very helpful for leading a family and a couple through all these decisions, with having a consideration towards the eventual help they will likely need from Medicaid and VA and other government help. If it's done wrong....it takes much longer to get approved for other monies down the road. If families start using their own money, it makes the process harder, because some things the money is used for are credits towards the application processes....so it's better if its the grandparents money that pays for it all. It gets them qualified for help faster, is what I am trying to say. Now....even with all this done (My parents had all these things all done and I thought when I had to step in, because they had done all the basics, they would understand and cooperate when they needed help to stay home....but they did NOT!!)....plan that when you or other family approach your grandparents to say they need more help, your grandparents WILL refuse and say they are just fine. They need NO help and they are NOT leaving their home ever..... This is common with elderly who start to need help. They cannot see what you see and they refuse to give up any control.....so it comes down to HOW you offer help and choices!! I couldn't convince my parents, until there had to be police called in for welfare checks, or for fighting between them or other bad things starting to happen....my Mom fell...my Dad didn't know what to do....and no family close to help for example. I had to call police in. In the end, I told my parents that if THEY wanted to choose what kind of help, they needed to have a plan in place with a home health agency that was acceptable to doctors, lawyer, family etc, because if Adult Protective Service got called in by the police or a neighbor, then APS would be deciding who stayed in the home, or who had to leave and where they would go or what kind of help they needed and neither my parents or myself or other family members would be in control of any decisions then! THAT convinced them to accept a caregiver coming in part time to help out, through a home health agency. The only other way to get help into the home, if they do not cooperate, is to wait until one of them is hospitalized, and then to tell the hospital social worker or case manager, that the person cannot be discharged without a home care plan or admission into a nursing home or assisted living etc....to be safe. Family has to be firm, that all of them are unable to take in the grandparents, or go live with them to take care of the problems. That way, the hospital people, will have to get involved with having the doctor order home care assessments and make a plan to keep one or both of them safe. Most elderly want to stay home as long as possible. Places family can check to get free or paid for home help is your local council on aging, your local alzheimer's organization, since it appears dementia is part of the problem, your grandparents doctors to ask them to make recommendations or do medical testings for dementia or alzheimer's etc so you know exactly what you are dealing with. As someone else said, if they are members of a church, that church may have volunteer resources to help. The Council on Aging often has volunteers who will come do yard work, or wash windows, or other home maintanance for free or for donations. They can get you in touch with Meals on Wheels, that will bring in free or low cost meals for elderly who cannot or should not be cooking in their home anymore. They also sit and visit a little bit and report unsafe situations. You could get a home monitor system put in their house, so you are sure they are safe or can get help fast if they fall or are sick.....There are a lot of resources like that, but again, I say, someone in the family needs power of attorney to handle their money and pay their bills, so that the grandparents own money can be use
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I'm not sure how to reply but I want to thank everyone for your suggestions. I family meeting will be a great start. I talked with the department on aging they would be willing to help facilitate a family meeting.

I never thought about hospice because they're not terminal but that's a great idea.

I feel much more relieved. I'll keep you posted on the progress.
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