My grandmother has just turned 80 years old. She lives with my grandfather — also 80 — and me (F, 26). They have three sons (63, 55, 40), one of whom is my father. The eldest son lives almost two hours away, we're not in contact with my father, and the youngest son lives several states away and is dealing with raising a small daughter.
I moved here to escape my parents' house, after being my father's part-time caregiver for years. It was unbeknownst to the family how intensive my grandmother's health needs have become. She is on at least 16 different medications and supplements, and has changed primary doctors twice in the last year, because "they don't know what they're talking about." She keeps all of her meds in a drawer, including expired meds, empty bottles, and meds she no longer takes, and has extreme difficulty keeping it organized even if we work on it together and put bottles into categories and organizer bins labeled by the time of day they're taken at.
When she was in and out of the hospital (at least 8 ER visits last year for UTIs and related symptons due to being on Farxiga), I managed her pill box, stayed with her during hospital visits, brought the notebook of information to all of the doctor visits, and acted as her advocate when her UTIs made her so delirious she didn't recognize what was and was not food. (One day she asked me what she was holding, and it was a jalapeno pepper, and those are her favorite kind of peppers; we grow them in the garden every single year.) She was bedbound last year from all the UTIs and hospitalizations and lost a lot of muscle mass, and she's doing a lot better this year and slowly gaining strength, but she pushes herself very hard and will fall, get heatsick outside, or almost pass out in the house.
I worry she's dealing with cognitive decline, as she and I have the same or very similar conversations almost every day, she goes in and out of having trouble reading phone numbers and typing them in appropriately, she forgets to wear her glasses because she forgets she HAS glasses and then is upset and confused as to why she feels sick when wearing the glasses (she never keeps them on for more than a few minutes, and her prescription has changed).
I've been able to keep her drinking water by getting her a big bottle with a straw with her name on the bottle and flavoring the water with Liquid IV packets, and she goes in and out of wanting to use her rollater (she's said before she doesn't like using the rollater because "I don't want to look like some sick, old person").
I had to leave my job because of how much energy it was taking to take care of her and navigate the constantly changing needs of what she's going through. She has a heart condition that requires her to be on diuretics, she has difficulty with interoception and — for exmaple — frequently cannot tell me if her stomachache is gas pain, cramping, or hunger, or can't tell when she needs to urinate unless she's a few seconds away from a bathroom accident. She varies with her ability to walk day to day. She varies between able to handle her meds and make her own appointments to not having any idea what she's taking and will double up or omit medications if not watched.
And the worst part is that it doesn't seem like she's aware of her difficulties. I can't tell if she's in denial or just truly can't tell. Every day I explain to her how her TV remote works. Almost every day I walk her through the process of logging into her bank account so she can check what she's got, and she'll be confused and upset by the number on the screen because she doesn't remember that she paid the house note just a few days before.
I guess I'm just wondering if there's a way for me to do this without a full-time job. My grandfather's burnout, not helpful, and has his own health problems. And my grandmother has fired our in-home health aides before. I'm losing steam; it's only been 1.5 years. I'm in therapy, I'm doing self-care, but I'm alone.
You have always gravitated toward caregiving roles and caregiving jobs because either they expected it or you did not feel safe as a child unless you were taking care of them (parents, grandparents, etc).
Imagine if you spent as much time and energy you as spending on them — on yourself. Imagine if you woke up thinking about how you could make your OWN life better in the million and one ways that you spend on theirs. That is what you should be doing. You have your whole life in front of you.
Sad to say but your grandparents are going to decline no matter WHAT you do.
I have a son only a little older than you and I am 100% firm that I would never allow him to sacrifice his life for his grandparents or for me or my husband.
Put yourself front and center.
Nevertheless, keep caring.
You need to help her liquidate Her and your grandfathers Assets and get both into care so you can focus with your job and earn your own way for your future care. If you become homeless if you depend on your family’s assets, contact a local county social worker to help you.
Why have you allowed this to fall on to you and what is your plan for getting out of this untenable situation?
You are young, and inexperienced, as I can tell from your description of events.
First, does she have Medicaid? Will she qualify for Medicaid? (Low income, and no assets) Either she has to resources to pay for in home caregiving, or Medicaid will pay for this. They can even pay you as her full time caregiver, if that is the direction you want to go. I had to quit my job to stay home with my husband full time, so being paid as his caregiver helped make up for my lost income.
In your case, I think you would benefit from having a trained caregiver, and even a nurse come to the home to help with her and to educate you about her condition.
You are going to have to change your and your grandmother's routine to adapt to her changing needs. You can't explain the TV remote to her. Or online banking. You will need to be her TV remote, and you should try and get POA to help with her finances. It's ok for her to try and be involved, as she still sees herself as capable and independent, but she can not handle things like bill payments on her own! It will take a LOT of time and patience from you to help her with EVERYTHING! And, it will help for you to learn her capabilities and how to manage the things she needs help with.
This may be too much for you. You need to consider how much you are willing and able to do for her, and whether to go back to work and let a team of full time caregivers manage her care.
When you face a new challenge, or have questions about anything, you can always reach out here and get great advice and information from people who have been there!
I'm sorry you feel so alone. We all know about the isolation of taking care of a failing family member. We all have lost connection with friends, family members, and our community. But, you do have a community of supportive friends here, online, to reach out to when you need!
Is there a reason why grandpa cannot be her carer or supervise her medications? If he cannot or will not. She needs LTC. This is where you contact her doctors and tell them you cannot take care of her full time. This is where you begin to call APS to start a record and offer suggestions on where grandma and grandpa need to be
It really is wild how long this has gone on. When I moved in, I hadn't known how intense her health needs had become. She was an RN for decades and always managed her healthcare fabulously, and whenever we'd visit she'd (what I now realize looking back) would mask so hard we couldn't tell, and my grandfather is so stoic that he'd never talk about how difficult things were getting.
The amount of time I've spent as a caregiver has been almost my whole life, every college major I was interested in was a caregiving field because I'd hoped the knowledge would help make it easier for me to do it. I eventually settled on veterinary medicine because it seemed distant enough from the human aspect but enough to still feel like I was doing good in the world. But I left after my sophomore year due to some wild family drama that ate up a large part of the money for the next school year, and because I was afraid of the family drama happening again while I was moved far away and unable to assist. I still don't know what field I should go into because everything I've ever chosen has been caregiving in some way- vet med, psychiatry, funeral directing, hospice, etc.
I will go back to school soon, counselor and I have been working on it, but I'm in a lot of debt from my old school loans and from the time I lived with my parents (I bought their appliances, handled the vet bills, did my best to fix broken things around the house.) So I'm hoping to lower the debt I have before taking on more and more.
Thank you everyone for your words. It's a lot right now. It's never not been a lot.
I think your family takes advantage of you. You were a student . Why should you have gone into extra debt supporting their household ?
I suggest you set boundaries and focus on you , rather than family drama etc .
In fact , move 1,000 miles away if you can from all family . Find a roommate .
The fact that at such a young age you had caregiving in your mind strongly suggests that you have been groomed to be a caregiver for your parents as well .
Stop right there...you are too good and not for your own good. You don't want to go from the frying pan into the fire. You stated you left one caregiver position to another, was that for housing?
Everything has a currency but at 26 educate yourself, work at a campus have them pay for your schooling, get a roommate and make a plan for yourself.
Make an appointment with a Social Worker at a hospital, an Elder Attorney and if needed sell the house your grandparents live in and place them in a 5-tier facility--independent living (IL), assisted living(AL), memory care, nursing home, hospice.
If grandfather was in the military, contact the VA. The IL you can bring services in and meals with be provided. There are physical therapists, occupational therapist, a hairdresser and house calls will come into the facility. There is a call-button, etc.
Your situation takes a Village. I know you love your grandparents but you are too young to take this on. At your age I was studying in Ireland, buying clothes, going out Irish set dancing.
I know apartments are expensive and sometimes in life it's the lesser of two evils but it doesn't mean if you don't live-in with your grandparents you can't still have a say in their care and visit them and tell them what is going on in your life.
Usually when there is dementia, the caregiver has more concerns than the patient. They may be worried about running out of marmalade as is the case with my mother, when all I do is deal with insurance companies. But, I am much older with a work-history, good education, traveled a bit, etc. to take on what I have but I don't recommend it for you at 26.
There are Seasons in everyone's life. When my father passed while I was in Grad School, I stepped to the plate. But I kept my job and "paused" my Master's program knowing that dad was an only child and his mother was left behind.
Nana was in her 90's and I knew she didn't have long. But, I went to work everyday. My mother and I visited Nana in person and provided any little whim but she lived at a beautiful place which now is run down but in it's day it was a Godsend for the position I was in. All her needs were met and after Nana passed I continued with my schooling. She only lasted not even a year.
But what are you doing for medical, dental, prescription, eyecare, pension, paid time off, etc. Get all of the schooling you can while you're young when you have that energy to go-go-go as I did in my younger day. Now at my age I am in bed by 9PM--lights out, say my prayers and put my jammies on.
You have a right to have a life. The other people in the family will let you take this on while they live their life. But, you are so young, you need someone to talk to and I think everyone here on this thread is saying to themself if you were our baby sister we would all agree, "We want better for you"!
Take that notebook out again and have a section of how you want your life to be. There is plenty of scholarship money available out there and the Community Colleges have a lot of good programs. Start today...Amen Sister!
It is commendable what you have accomplished but you need to get out now. At 26 you should be working, studying, having fun with friends etc.
Get another full time job. Once you have the job send out a group text oro email to Grandpa and two of the sons (not your Dad.) Tell them you've taken a full time job to pay the bills and to further your education. You've treasured the time helping Grandma but you can no longer do the work. You feel like Grandma needs a much higher level of care that you can provide or that anyone can provide in the house and that you don't think Grandma is safe in the house. I'd try to let the three men figure out the next steps.
Find a place to live even if it is a roommate situation.
Your therapist should also be able to guide you on a plan to get out of the house.
You can’t do this and work full time . Your grandparents need to be in a care facility , and you need your life back . You need money , your own place to live , and a social life . Maybe get a roomate if necessary to afford rent . You are way too young to be stuck in this situation , missing out on your own life . You should not be a care slave .
IMO in general , When the elderly refuse, or fire hired caregivers , keeping a family member as the only caregiver , game over . To a facility they go .
Let us assume you are willing to Saint-like, sacrifice your life by jumping directly onto the burning funeral pyres of your grandparents, and having no life of your own at all.
Let us assume that is your choice, and you accept that as your self-sacrifice until they die.
EVEN THEN this is not sustainable in any way.
You already recognize that as your own job skills, savings, entire life is on the sacrificial altar and you are in therapy seeking an answer.
There IS only ONE answer, and it isn't talking this out over and over again while a therapist collects 100 dollar bills from you.
The answer is this:
Your grandparents now need the care of not ONE family member, but of an entire MEDICAL TEAM that has several shifts of caregivers to care for complex problems. They need their meals, their medications, and everything else monitored and seen to.
Unless you can chop yourself into about 10 other people, what you are attempting is hopeless and endless.
I am rather surprised, if you have a good cognitive therapist, that this hasn't been said to you. Perhaps read her/him my answer to your post, and see if they have so input. Ask them "How do you FEEL about this?" (because that is the worthless question-game that a lot of inept "talk-therapy" therapists practice.)
I am sorry that the others are nowhere near, but it is up to one of the CHILDREN to take this on. If they cannot, call APS and say that your grands now need guardianship of the state.
And go have a life. Sorry to be brutal about this, but you need to KNOW that what you are doing is not under any circumstances, doable. I wish you the very best.
I use four 7 day pill boxes that get refilled every Saturday.
Early morning box - for her thyroid pill
Breakfast box - for half the meds
Dinner box - for other half of meds & supplements
Bedtime box - for dementia meds
This eliminates her having to fiddle with pill bottles.
And it gives me a chance to see when refills need called in, in plenty of time.
I also keep an excel spreadsheet that lists all her meds and supp's, each row is a consumable and then columns for what, how, why, which pill box it goes in and notes. It's a huge help refilling the boxes and at Dr. visits when they go over the med list 3 times just hand them the landscape printed spreadsheet.
Also I hire a home care company to come in and stay with her for a few hours every day M-F while I go to work.
Does Grandmother think this? Grandfather? How about yourself?
The simple truth is is when care needs exceed what a spouse or family members can do - then NON-family help must be added.
A bigger care team is needed.
You need to work out how you get a home of your own to take a step back from caring for two people who are in need of more than you will be able to provide.
You cannot provide 24/7, if you continue to try they will outlive you. From your description of their conditions they need more than you have the skills or time to devote. My aunt was admitted to nursing care in the UK with one quarter of the issues your grandparents have. Please look at the options for support in your area, whether it be voluntary or private/state funded.
Good luck, I will pray you find a solution 🙏