Find Senior Care (City or Zip)
Join Now Log In
E
Ema325 Asked January 2018

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.

Countrymouse Jan 2018
Read your post. Read the response. I've nearly stopped spluttering now so I'll begin.

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.

BarbBrooklyn Jan 2018
My dear, it's not your sisters who need to step up. You all need to step back. The professionals need to take over. Contact the local authorities and get a professional assessment. And then find the professional resources that will care for GM.

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. 

ADVERTISEMENT


BarbBrooklyn Jan 2018
Contact the local Area Agency on Aging. Get a professional needs assessment and find out what services Grandma qualifies to receive.

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.

talkey Jan 2018
I agree that it's time to look into professional care, a facility if that's the best fit. Grandma can have a fine quality of life in a good facility, and she's not going to get any easier to care for. My dad was in one, and I'm telling you the ladies there were a hoot! So much like high school, gathering in little groups and chattering, albeit nonsense :) And the men were just like young boys ...they sat in a row along the wall and watched the women. I loved watching all of them. Do yourself a favor and Grandma too and at least check into a few, schedule some tours, and give yourself both a chance at a good life.

jeannegibbs Jan 2018
You are not responsible for your sisters' decisions. You have no control over you mother's decisions. You have no control over Grandma's behavior. But you are 100% responsible for the decisions you make, and putting your life on hold at this point in order to live up to other people's expectations is a very bad decision.

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.

rovana Jan 2018
Please listen to advice above. Jeanne Gibbs is right on target. The disease is what it is, progressive, sometimes years of slow decline. It makes no sense to sacrifice your life when professional care would be better for Grandma. Care by professionals can actually add years to life - I've seen it happen! I'm wondering if your mom and aunt are responding to the idea "what would the world think if Grandma was in a facility? People like us don't do that" etc. etc. The kind of stupid silliness I've seen along these lines is unbelievable.
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.

Lvnsm1836 Jan 2018
Your sisters need to step up and help. Yes they dont want to put their life on hold either, but it is too much for one person. You need to have your life too. 
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.

SueC1957 Jan 2018
Ema,
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.

Lvnsm1836 Jan 2018
Barb, you're right , and you  make  good points

Ema325 Jan 2018
Countrymouse, My grandma was living in Virginia at her house next door to my aunt, who was her primary caregiver with the help of my cousin. My aunt was diagnosed with cancer, so my cousin has taken over caring for her and we didn’t know what to do with my grandma except to move her out here to California into our house. My mom has lung issues and gets chronic pneumonia type infections but she still does as much as she physically can, but when my grandma is trying to leave the house, run around without her walker, spitting out meds and refusing to eat, my mom cannot keep up.
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?

See All Answers

ADVERTISEMENT

Ask a Question

Subscribe to
Our Newsletter