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.
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.
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.
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!
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!
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.
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.
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.
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