I am trapped in caregiving, how do I get out?
I love my grandmother, and I wanted to step up and help as much as possible, but it quickly turned into myself being primary caregiver. She’s a difficult Alzheimer’s case with behaviors, and as much as she wants to go back to her own house, I still can’t figure out how to make that happen safely. I’m only 29, I planned to get married this year, finish my masters next year, and start my own family after that. Now I can’t have any of that. My grandma has yet to accept any outside help, not have we really found a person that can handle her. My mom and aunt that would be willing to help have both gotten chronically sick and can’t help as much anymore, and my own sisters and cousins have no interest in helping. My mom and aunt that are sick desperately do not want my grandma placed in a home because it’s highly likely she would go downhill fast, it costs too much, and I don’t really have a say in the matter anyway. If I don’t keep helping, my mom will try to do it all on her own without taking care of herself and it will likely kill her. She will go to adult day care but so far staying any longer than 4 hours hasn’t worked, as I get calls to come pick her up because she’s agitated and trying to leave. I need help with ideas on how I can have my life without sacrificing hers or my mom and aunts lives.
While grandma doesnt want outside help from a professional, this would better for both of you. Maybe talk to your family about arranging outside help. Start her slowly to get use to it.
What are Grandma's resources? That's what pays for her care.
The other thing you might look into is having her assessed by a geriatric psychiatrist. Meds for anxiety and agitation can be a Godsend.
My daughter is almost exactly your age, and at a similar life stage. The very *idea* that she might stall her entire life to indulge the preferences - they're preferences, they're not needs or principles, even - of her grandmother..!
Over my dead body that would happen.
I'm very sorry that your mother and aunt have developed health difficulties of their own. Nevertheless. Your mother is an adult capable of making her own decisions. What she does about her mother's care is up to her. Her choice is not limited to #1 you look after grandma or #2 she looks after grandma and kills herself in the process.
Where is your grandmother living at the moment? You say you are aiming to get her back to her own house (this, believe me, is not going to work but that's another issue) so where is she right now?
I repeat that I am sorry that they are ill, but your mother and aunt need to wake up to the realities of Alzheimers Disease and come to terms with the fact that your grandmother will sooner or later need 24/7 care in a secure unit. The sooner that's accepted, the better the chances of her settling well into a community and enjoying a decent quality of life for as long as the disease allows.
There is an enormous volume of reading material about Living with Alzheimers for both people with the disease and those who care for them. The Alzheimers Association is a good place to start. Get some professional allies - your grandmother's doctor, local social workers, caregivers' groups - on your side and start working on a more realistic plan to put to your mother.
Just know that in my experience, getting an agitated dementia patient seen by a geriatric psychiatrist is the single most worthwhile thing you can do!
And the idea that GM will "rapidly decline if placed" is just wrong. Sorry, not my experience. Professional care is what is needed at this point.
Get Grandmother evaluated and learn what resources are available to her.
Get her to a geriatric psychiatrist.
You don't know whether GM is going to go downhill fast or not, and if/when she does it will be because that is the progression of her disease, not because of where she is living. Start learning how to help a loved one settle into a care environment and stop thinking you can predict what will happen there.
You sound like a very sensible young woman with a good head on her shoulders. I'm sure you are a wonderful person, but you are not SuperGirl. Grandmother needs professional attention, and not getting it for her is a big disservice.
It is not realistic to think Grandma is ever going to go safely home. Her preferences do not override your, or your mother's or your aunt's real needs. This is a case where clear thinking is needed, not a muddle of emotional guilt.
I thought if it was possible to set up 24/7 care at then she could go back to her home in Virginia. We also worry about my aunt passing before my grandma gets to see her again. Even though grandma has her fair share of confusion and memory loss, she still has plenty of lucid times where she’s understanding the situation.
I love that y’all answer so quickly and have smart and supportive things to say. I feel if I could push my mom and aunt agreeing to a memory care home here in California, I would go visit my grandma multiple times a week and been fine with that knowing that if I ever cannot come, she would still be taken care of. I think my mom and aunt biggest problem is the finances. My grandma doesn’t have much of anything (and for other complicated reasons, selling her house isn’t an option) but yet she still gets just a little bit too much in social security to qualify for Medicaid. Additionally, she doesn’t need any “skilled nursing.”
I want to try the geriatric psychiatrist, what exactly do they do? Can they help sort out medicaitions and help treat my grandma’s depression and anxiety?
Yes, that’s what a geriatric psychiatrist does. They are hard to find but worth the search.
You need to see a certified Elder attorney in Virginia if that is where you want GM in the memory care. Someone who understands the Medicaid laws for the state where she will be a resident. If you and mom are likely to manage her care then California would be the place to start. There is something called a Miller Trust that makes it possible to qualify for Medicaid when one needs to divert a portion of regular income in order to qualify for Medicaid. You can also contact the Area agency on Aging to come evaluate your GM for services. Also know that GM house could be exempt under certain circumstances. That’s why you need to see an elder attorney.
You are very correct in deciding a masters, a marriage and a family would be difficult if you decide you are going to spend the most productive years of your life caretaking GM and mom. But managing their care, while a challenge, is possible. When you have things a bit more manageable your sisters might be more willing to participate.
Life presents us with such heartbreaking situations! I know all too well about that.
I understand very well your mom and aunt’s fear -and also guilt even if not said- about the possibility of placing your grandma in an outside care facility.
That’s one of the most difficult realizations caregivers eventually have to get to:
We are not necessarily the best caregivers for our loved ones!
No one will possibly love them as we do, no question!..Therefore we need to LOVE them ENOUGH to place them in a situation, including a location, where they receive the best possible care...accepting that -with Alzheimer’s patients specially-, the best care is normally not be the one we can give them!
In your family’s case, it’s obvious the best care is NOT the one comíng from either one of you:
Your mom (she accepts her own health makes it impossible to handle it), your aunt (severely ill), your cousin (has the right to devote all the energy to care for your aunt! and it is not fair nor feasible to expect him/her to care for your grandma too...which leaves us you Emma, full of good intentions, but not knowledge to properly care for her. Same applies to rest of the family even if they wanted to care for her. The key word here is knowledge.
It’s time to be realistic! Please seat down and explain to your mom and aunt that getting outside care IS loving her. I highly doubt she’d decline faster as they fear...but even if so, your family has no choice. You can only do your very best...the point is to understand that even if you were to devote your entire life to her...that very likely would not be the very best for her!
Also Emma, im sorry to have to remind you that with your mom’s frail health you might find yourself with another caring situation in your hands too, sooner than you expect! And I’m sure you’ll want to care for your mother the best you can as well. I’d plan for that too. Don’t let life happen to you!
Also, think carefully about where to place grandma, if in VA or in CA. If you ever have to care for your mom, do you think you’ll do it where she lives in VA or bring her to CA? that’s your long term realistic horizon, so try to plan it to be as easy as possible for you. Both should be in the same geographical location eventually. I wouldn’t count on your siblings to help even with your mom, so plan smart.
Lastly all the practical advice you have gotten here is amazing (geriatric psychiatric, geriatric lawyer, All professional help possible! Etc)..Use All that information! This website is a blessing for guidance. My answer is more towards analyzing your situation and addressing the moral aspects of it and attempting to remind you of the realistic aspects, so you give yourself permission to do what is right!
Notice I haven’t even mentioned anything about YOUR life, your plans and hopes. All I’m recommending is about your grandma receiving the best possible care so you and everyone else is at peace. But I’m sure Emma, your grandma wouldn’t want you to sacrifice your life for her, especially if it’s not the best for her own well-being!
A big hug to you, as I know this situation is heartbreaking in so many levels. Get organized, get people on board, don’t doubt you’re doing exactly THE RIGHT THING!
God bless you!
Do NOT ruin your chances to get your masters degree, get married and have children because your family has guilted you into caring for grandma.
It's bad enough that we old farts have the worry and caregiving for our parents falling on us. But it is unthinkable for you to have no job, no husband and no kids because you are taking care of a demented grandmother. You will become resentful and angry that caring for her has robbed you of your life. When she dies, it may be too late to get the masters degree, the fiancé will have fled for greener pastures and you'll be biologically too old to make babies.
Read other posters on this board in your shoes. They are not happy.
Your gma will only continue to need MORE care. She won't go backwards. She won't ever be able to go back home alone again.
Apply to Medicaid for her. She will need the care of a memory facility at some point. Better now when she can settle in. Do not break your back nor your spirit solely caring for her.
There are plenty of seniors "living" in facilities, it's not a death sentence.
Be all you can be. You sound like you have great potential. Turn the responsibility of decision making of your granny over to your mother and aunt. The choice for her care is really on them.
I know this is all new territory for you; but to us old timers your family has fallen prey to one of the classic beasts of elder care: What Happens When The Primary Caregiver Drops Out. There is even a classic statistic to go with it, that up to one in three caregivers dies before the person he or she cares for. Your aunt's diagnosis, apart from being miserable news on its own account, has crashed the whole system.
What a nightmare for you all.
I hope that you'll be able to find good professional advice locally to help you come up with a long term care placement for grandma. Keep being a squeaky wheel; just be clear in your own mind, and to anyone who's asking, that your becoming grandma's full-time caregiver is not among the options.
" That’s one of the most difficult realizations caregivers eventually have to get to:
We are not necessarily the best caregivers for our loved ones! "
This is so true.