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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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Nielle, you've been given excellent advice on overall actions and perspectives. so I'm only going to address the more day-to-day issues.

For meals, find out if they're eligible to get heart health meals through the local Meals on Wheels program. You could contact the local Area Agency on Aging to find out which agency runs the program. You can also cook ahead of time and package individual meals for the two of them. Get them some microwaveable containers to heat up the meals. It's easier, quicker and safer than cooking.

If your mother and other relatives aren't hands-on caregivers, as you intimate in your post, they could at least help with meal prep, something they can do right at home.

Chores: The Area Agency on Aging runs a program called Same Address and another called Safe Home. The former provides assistance for chore service through a turnkey operation. They locate contractors and make arrangements for help; you pay them the bill directly.

This has its drawbacks, but it might be something to consider for exterior home maintenance. I've also called local Senior Centers to get lists (if they have them) of contractors who want to provide services to seniors and sometimes get discounts.

One of your parents' doctors may script for limited home care. If so, ask for an OT to provide an assessment. This would include the need for grab bars, methods of safely moving in the house and while doing limited chores, etc.

Check with the local public transit agency, or one in a nearby larger city, to inquire about point to point transportation for medical appointments. Some have paratransit service as well. In my area point to point service is $1.00 per ride, but the limits are 10 miles from the pick-up point (my house.)

Some senior centers have good activity programs to provide social interaction. Check those out as well.


There are a lot of issues on the table in your individual and family planning. If other family members aren't hands-on participants, they could do the research, assuming they have computer skills.

I would spend some time creating what are known in project management as WBS - Work Breakdown Structures, listing the goals and tasks, then try to get the family to commit to specific tasks.

An example of a simple one would be the goal of consistently available meals. The elements could be (a) develop a heart healthy diet plan (b) research that if necessary (c) ask for family members to commit to preparing freezer meals, perhaps on an alternating basis (d) arrange for delivery (e) contact Meals on Wheels to see what arrangements could be made, (f) ask family members to remind or call your grandparents (if necessary) around mealtime to ensure that they're thawing and cooking their meals, and (g) perhaps follow-up with a call to ensure that the meals actually were enjoyed, and if not, eliminate those from the menu.

This sounds very basic, and quite tedious, but as master coordinator, it helps you to ensure that your areas of concern are addressed and that (hopefully) the rest of the family will participate.
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Agree with all the above. How lucky for your grandparents to have you! Thank you for being you. Also, your grandparent's doctor can order Hospice to begin. This does not mean they are dying,it is to make the quality of their life better. This would happen immediately and would be no cost - Medicare is billed. The Hospice person usually a CNA or RN assigned will stop in once or twice a day - Am & PM if needed to help with feeding, hygiene and checking meds. Sometimes they assist with light housework. This can give you time to have meetings with family on what other areas of help might be needed. I am a palliative care physician and also used Hospice for my husband ( for 8 years) Although the doctor needs to write the orders every six months - it is the very best way to get things rolling and to keep outside resources involved - Hospice will also get a Social Worker in to discuss options with your family. Good luck to you and once again - Thanks for being there for your grandparents. Doc
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You are in a very difficult position. However, you are not alone as family members often want to turn a blind eye to a situation like the one you described. As other suggested call a family meeting and do tell them what it it about beforehand. Don't set your expectations too high, given their past behavior, what I mean is don;t count on them to step up to the plate and be a regular source of support for your grandparents.
As others said, do not quit your job. If you are in a mid-large size dity, then you might consider finding a geriatric care manager, If they were regular church goers then you might approach the minister of their church to see what he suggests in terms of community resources,
At their ages and those conditions, your grandparents need in-home assistance by a trusted reliable home health aid, which can be hard to find.
You also need to understand their financial situation. You should findout whether your grandfather is eligible for the VA Aid and Assistance; there is an overview on this site. It's benefits are generous, but the application process is frustrating and the determination period can be quite long.
You also need to find out if they have a Power of Attorney, medical directives and a will. Find a local eldercare attorney to help them with these documents--if they don't have them already.
Other posters have made good suggestions about family meetings. However I am the resident pessimist about families cooperating in a situation like this.
If you try to be there every weekend, you are likely to burn out from the additional work and stress of caring for them every weekend. While is is a highly worthwhile goal, you must stay healthy and not jepordize your health and your job. Although you may feel gulity, you need to recognize that you can not do everything yourself.
Please keep posting as the situation progresses. There are so many wise and experienced persons here to help you. Best!
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I agree with the others: start by discussing with the rest of your family and be very careful about quitting your job.

In terms of what you and your family is facing: given what you describe with your grandparents, there are three major types of work that need to be done and your family will have to work out a plan for addressing them.

1. Someone will have to become the surrogate medical decision maker, and surrogate the financial decision maker. This is sometimes the same person but doesn't have to be. If your grandparents are not too far along in dementia then they should be able to designate this with a durable power of attorney (DPOA) for health, and then for financial/general. If they are already too far along with dementia and they have not designated anyone to take over, then you will have difficulty, especially with anything that is related to finances. (Families sometimes have to go to court to get guardianship in this case.) So making sure your family has the necessary DPOA documents should be a high priority.

2. Someone will have to oversee and coordinate everything (healthcare, home services, transport) going on with your grandparents. People with money sometimes hire a professional care manager to do this. Otherwise, a family needs to designate someone to do this, and some families have people take turns because this role can be a lot of work. Ideally the coordinator can delegate some specific tasks to others, like finding out what additional services might be available from the VA and so forth.

3. Someone -- or sometimes several people -- will have to help out with hands-on tasks in the home, and possibly supervision. Sometimes these are family members, friends, church volunteers, or others who are unpaid. Sometimes they are paid home aides. Sometimes these services can be provided by Medicaid or by the VA or occasionally by long-term care insurance. But usually people pay out of pocket or family members pitch in.

I have never seen a family address everything in a single meeting and frankly I don't think it's possible! Plan to have several meetings to hash things out (and your grandparents should be involved in some of them) and then it's ideal to plan on regular meetings.

Your grandparents are lucky to have you looking out for them. Good luck!
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if for some unfortunately reason your parents cant step up,contact your state dept of the aging or the county dept in which they live and request a home check. I think that would be the fasts way to get help.
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Requesting a family meeting (without your grandparents the first time) could be a good idea. Find out where everyone else in the family is in terms of their concerns about your grandparents, what they are willing to do to assist them, etc. It would be helpful to know if your grandparents have their legal paperwork in order - General Power of Attorney, Power of Attorney for Healthcare, will, Advanced Directives, etc. These are important documents which are very helpful to have in place.

What is the financial situation of your grandparents? They may or may not qualify for Medicaid. Assisted Living is expensive so you will have to see what they could afford, the veteran's benefits for which they may be eligible, etc. If they have the funds available, they could pay a caregiver to come to the home a certain number of hours per week.

Almost no one wants to be told that they cannot take care of themselves and that they need to move from their home and be more dependent on others. Sometimes it takes more than one conversation to convince people. Sometimes families wait too long and their loved one resists making changes and may not even be competent to sign legal paperwork. It is almost always better to raise these issues earlier than later.
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Sounds like time for a family meeting, without your grandparents there, to see what would be the next step in their caring. Your grandparents children need to step up to the plate and see what type of care is needed. Have someone check out veterans benefits. Have someone check out Medicaid. Have someone check out Assisted Living and the cost of same.

Whatever you do, do NOT quit your job to take care of your mother's parents. It is up to your mother, her sister and brother to make the plans, and for them to deal with any fall out if their parents refuse any type of care. Your grandparents could be at the stage of dementia where they can no longer make good choices for their own future.

I know you want to help your grandparents, but don't give up your future. Your grandparents could live another ten years, and that would be ten years of you being out of work and not adding to your own social security and Medicare. If you want to help, maybe pick Saturday or Sunday and come help your grandparents to give your mother, her sister and brother a break.
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