I am new to be a caregiver. I’m a 35 year old male who works full-time and I’m still trying to make decisions for my future and I have been thrown into caregiving. My father had a stroke 9 years ago and his health has been spiraling since. He started dialysis the following year and is in year 8 of his dialysis treatment. My father is extremely stubborn and always wants to be the boss, but now he is need of so much help and I provide it, but I often feel shafted. I have a stepmother who is handicapped, as she is hard of hearing and a sister who are no help at all. My stepmom wants to help, but because of her handicap, I have to retrace all of her steps often and circle back with providers and I always find out, she only has 20% of the conversation and the biggest and most dire details are missed. My sister does not help at all and I’m honestly not sure why.
My father, due to gangrene had one of his legs amputated two months ago and has given no effort to his physical therapy, but calls me everyday to tell me he is ready to come home from the nursing facility that he is in. This is the 4th facility he has been too, as he gets into a facility, a medical complication occurs and he is moved to a hospital for treatment, but stays so long, that he loses his spot and I have have to start the process of placement all over again. He cannot go to just any facility, as he has dialysis 3 days a week and finding nursing facilities with on site dialysis and physical therapy, that accepts his insurance is very difficult. The facility that he really like did not have on site dialysis and left me spending $600 a week to have him transported by ambulance 3 times a week to and from dialysis.
My issue is, on top of being the only person capable of handling his affairs, my father and stepmother call me with complaints about every facility he visits. He calls me everyday to say he wants to come home and it breaks my heart to the point that I literally cry daily.
From my family to the facilities to the providers, I have no time to date and I barely get in any sleep. I feel like I have put my entire life on hold to make sure my father is good, but no one is looking out for me.
My father is getting progressively worse and I am the only one in my immediate family working right now, so I recently started saving for and planning for his funeral because there is no insurance and I know that I cannot withstand the shock of his passing and try to figure out how to pay for it.
I’m very new to being a caregiver and never thought I would be here at 35.
I feel like I’m on an island alone. I find myself resenting my father, stepmother, sister and my entire extended family.
My father is starting to show signs of dementia and gets fixated and obsessive over things and constantly calls and asks the same things multiple times a day and the days following. I screamed at my father in frustration for the first time in my life over the phone today and I know that I hurt his feelings and I’ve been feeling guilty about it for hours
I’m trying to be strong for my family but everyone is ungrateful and brings me complaint after complaint after complaint. I don’t know if I’m doing a good job or if I am failing my father.
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Please don't use your money to pay for your dads care. If he has no money he has to go on medicaid, end of story. His care can only be dictated by what he can afford - not you funding him.
It sounds like your dad is going to continue on a slow spiral until he dies. Sad but it is the truth. If he loses his spot at a facility let the hospital take over finding him placement in a new one that meets his needs. You can't do it all at this point because you are only one person.
You are doing a good job and the best you can under these difficult circumstances.
Try not to feel too guilty for being human and yelling......we've ALL been there with a difficult loved one, myself included. You're in a particularly stressful situation and blew up out of frustration. Give yourself some grace, apologize, and move past it.
Question: If dad is in such a dire health situation, why has hospice not been suggested or discussed? Or perhaps it has and dad is unwilling to stop life saving measures being taken to prolong his life? Dialysis, btw, only works for SO long so he may not be able to continue with it much longer anyway, which would lead to the need for hospice care.
I realize dad is only 66. My sister in law was 64 when she passed away with diabetes that led to a foot amputation, liver and kidney disease, etc.
For now, I suggest you consult with and perhaps hire a Geriatric Care Manager to help you navigate the medical crises your father keeps having. And to help you find permanent placement for him in a Skilled Nursing facility. He doesn't have to love it.....he just has to realize you cannot devote your entire life to his care and management. Period. Love ya dad, but I have to make a living and have a life too.
I'm so sorry you're going thru such a stressful scenario with your father. May God help you find the answers you need to solve this dilemma. Welcome to the forum.
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For me? I think your sister may be the wise one, and I guess I would be speaking with her about how and in what ways you can pull back from all of this. Your father is and has been in care. YOU, unless you are his acting POA, aren't responsible for finding him a facility that can manage his dialysis treatment.
Worse, you are spending your own money. What will happen when you reach this age? Trust me that it takes a lifetime to save money for care needs in your OWN future. Will YOU be this burden on your own progeny?
I at 81 can assure you that it comes in the blink of an eye.
You have taken on ALL OF THIS. Your thanks for that will be to take on the care also of your mother, who is, apparently at an early age if your Dad's age is any indication, sinking into dementia.
I think that you have taken on too much. This is, to my mind the very definition of throwing yourself upon the funeral pyre of your parents. It's one of my favorite expressions. The thanks we get for doing everything is that people EXPECT us to do everything. And are furious when we resign from that. Sainthood, maybe, but a bad job description there to be certain.
I think you should contact a good therapist and I think the therapist should be a licensed social worker who can guide you toward giving your parent's care and future care into the hands of people trained for it and paid for it. They are very ill. You didn't cause it and you can't fix it but you CAN give up your entire life to it.
I think at 35 you may be looking at the last years in which you can build your own family and your own life. I think you should ask your Sister for some guidance and if there is a way you can provide your failing parents with the help of your State for guardianship or help.
I don't see how this is to be survived to be frank. I think if you continue on you will get exactly what you are getting here, which is sympathy of all (and you can add my sympathy to the pile to be sure), reassurance that none of this is your fault, reassurance that your reactions are normal, reassurance that you are a good son. Meanwhile this 10th Circle of Hades will continue like a merry-go-round, endless as you approach 40, 45, 50, 55.
I am so sorry. I understand fully how negative I sound and will add to my negativity to tell you only that dating or no, you will not find a woman who is smart buying into this cycle; and if one does, she will leave. But only after enormous pain for you both.
This is tragic. Please get help and guidance to let a therapist know you are overwhelmed and cannot continue in this manner. And whatever ELSE you do, do NOT move in or allow them to move in with you. Start telling social workers and care residences that you cannot help them, have no idea what to do. And most of all, stop paying.
No guilt. You didn't break this and you can't "fix" it. The day I realized that there were no "good" solutions to my mom's medical/dementia problems was the day I regained a whole bunch of my mental health.
Dad needs you more than you need him-I'm sorry to be blunt. But I think a bit of tough love is in order here. When Dad complains, I might say "I'll look into that" or "I can't fix that, Dad, that's just the way it is.".
Don't get dragged into endlessly looping conversations. It's okay to leave, or hang up saying "oops, gotta go, Dad."
And forget about nagging your sister. If she wanted to get mired down in all this, she would have by now. She may be better at setting boundaries than you are; hard to know what to think with so many parts of the story missing.
Thirty-five is FAR too young to be doing what you are doing. You have become “the solution,” and getting yourself out of it is going to take guts and determination…whew.
Medicaid. Nursing home. Visit occasionally. Let the stepmother’s children, if any, fool with her.
If anyone has an obligation to be involved in all this, it is his wife, your stepmother. Not you. It’s up to her to get hearing aides so that she knows what’s going on. Being ‘hard of hearing’ is a cop-out for not having to be on top of it all – and dumping it on you.
Stop trying to be 'strong for the family' and be strong for yourself. You never know, someone else might step up! Alternatively, you could arrange the hire of a Geriatric Care Manager, paid for by Dad and stepmother, as suggested by lealonnie. Or you could just walk away from the care issues, and turn yourself into a normal son who makes social visits. When Dad comes ‘home’ again, you could back off (take a holiday away?) and inform APS if you feel that he will not be adequately cared for.
In all honesty, if there is no-one except you to ‘manage’ this, it sounds as though your father really should become a ward of the state. You certainly should not be spending your own money for dialysis transport - the state can do that once they are responsible.
Your dad is facing his mortality. You haven’t failed your dad. His expectations of you are too high.
As far as your sister goes, she’s dodging a bullet. Just as you know that this is too much for you to handle, I am sure that she is aware that it’s too much for her to handle as well.
I understand your frustration. I cared for my parents too. It’s tough dealing with everything all on your own.
You feel like you have put your life on hold because it is on hold. You’re stressed out to the max waiting for the other shoe to drop.
News flash, the shoe dropped a long time ago! It’s time to make other arrangements for your dad so that you can live a life of your own.
Your father is not going to become well. This isn’t just a bump in the road. It’s a major health crisis and I would inquire about what options are available for him. I love Lea’s suggestion of speaking to a geriatric care manager.
Who have you currently spoken with about your dad’s future care? Social worker? His doctors? Hospice providers?
Once you put a new plan into place, you can relax a bit. It’s still going to be tough emotionally, but things won’t be as bad as it is now.
It’s heart wrenching to watch our parents decline. I feel your pain. We have all been there.
I know that you feel badly about yelling at your dad. You’re human and there is a limit to how much you can tolerate before losing it.
My father had a stroke too. He had bladder cancer, heart disease, diabetes, high blood pressure and so on. When it rains, it pours.
I was fortunate that my father wasn’t one to complain and he was appreciative of my help. I’m sorry that your dad is making things harder for you than they already are.
I don’t know if you are interested in this but you can donate your father’s body to science if you cannot afford to pay for a funeral. Please don’t spend more than you can afford if you do have a funeral. Cremation is a less expensive option.
Wishing you peace as you sort this difficult situation out.
Don't beat yourself up. You're doing the best you can and I know it seems unappreciative, but it's all you can do.
Remember also that you come first. YOU come first. Like others have said, and I have told myself and cousins, we didn't cause the illness, and we cannot cure it. All we can do is our best. Don't beat yourself up if you feel like you're letting dad down. You're doing your best. One day at a time. I do understand how you feel. Like others have told me. This didn't come to stay. It came to pass. One step at a time.
I came across a wonderful NZ health website once. (I am not NZ & will have mucked this up - huge apologies & I hope one day someone can enlighten me.) This is my own take...
We all have our canoe to paddle. It's a symbol of our life, travelling along I guess. When life gets hard, we rely on the forces that sustain us: our physical strength/health, our mental health/cognition, our family, our community. If one pillar/corner goes down, we rely on the others.
Your Dad's physical health is poor. Stroke, kidneys, now possible mental decline. Foggy thinking (or dementia symptoms) are very common post stroke & also nearly always when dialysis treatment can no longer keep kidney disease at bay. He may have both.
Dad's physical health corner is in the water. His mental/cognitive health dipping down there too. His community is a constant change of medical staff, care workers & his wife that has her own dificulties. Barely afloat.
In is family corner is you - StressedOut and no wonder! You are doing it all!
No canoe can stay above water with half or more submerged. (See where this is going..)
It appears the health side of things cannot really be improved, so paddling furiously won't keep the canoe afloat. Just wear you out. Time to head for help.
More 'community' would be my aim. Social Worker, Geriatrician, faith leader (if he has one) & yes, Hospice.
We will all wear out one day.
Whether your Dad's time is near or not, you want to survive this to paddle on as you are young yet & have much river ahead.
I am so sorry you are going through this.
Yes, you are doing everything right - except looking out for yourself. I know - it's easy to hear, hard to do - especially when everything and everyone is leaning on you. Anxiety, lack of sleep, and resentment for family not helping you are absolutely normal, and of course make everything more dire and exhausting.
A lot of good advice from others that I will echo:
- Keep your job - do NOT leave it for caregiving. That can be your rock and escape, and give you stability.
- If feasible, please arrange talking with a therapist to cope and learn new strategies in talking to and dealing with Dad's situation. Or talk to some good friends if possible. You definitely need help letting go of the guilt and pressure of taking care of everything. Dad may fight you, but sometimes we have to put our foot down and say "you might not be happy, but this is what's happening and is what I can manage for you" and leave it be.
Try to limit your phone calls when they get too much - even if it's a lie or distraction to cut off those triggering conversations - "...oh! OH DAD I have to go! Getting an important call, let me call you back a different day..."
I highly recommend limiting their phone calls.
- Definitely contact a geriatric care manager or your state's elderly care options. I have found even talking to people who work at the hospitals and facilities to point me in the right direction when I was too exhausted and overwhelmed to do research on my own and had no idea where to start.
Dad needs permanent in-home or in-facility professional care, maybe hospice. I worry for your finances - it sounds like they don't have much and you are footing it? This is not feasible for you. Can they qualify for medicaid or some other help that *DOES NOT* detract from your own hard earned money?
S.O., you're doing the best you can. Forgive yourself.
Not a long-term solution, but I have found placing my phone on DND at certain times and certain days (and drawing boundaries and reiterating them about the days and times I will actually be free for draining phone calls) helpful.
Best of luck to you.