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.
Tell the facility your father is currently in that he is an unsafe discharge because there's no one at home who can handle his care needs.
No, this is not what he wants but it is what he needs. It's for his own good.
Your father and step-mother belong in assisted living. There are AL's that they can live in together who can meet both of their care needs.
There are AL's that also offer nursing home care and memory care in a separate part of their facilities so spouses can still be together.
There are choices. Your father and step-mother will not even consider one if you're meeting their every need and demand.
I know it's hard because you love your dad and you want what's best for him and his wife. This is why you have to be honest with them and speak plainly. I will tell you something and this comes from 25 years of working as a caregiver.
Neediness and stubbornness cannot be paired together. Never tolerate stubbornness from any person who relies on you for their needs or care.
Caregiving is only successful if it's done on the caregiver's terms.
Not the care recipient's.
So set your terms here.
Tell them that you will not be available for their needs or every complaint. That it's impossible for you to manage all of their needs while also working a full-time job and managing your own life.
Let them know that you love them and do want to help within reason but will not be made a slave to neediness and stubbornness. Either they will be reasonable or you will not help them at all and will let the chips fall where they may. This is how it has to be because the stubbornness has to be broken and discarded for any positive changes to be made.
My friend I have told countless needy seniors and their families a hard but simple truth.
Nothing gets a senior a one-way ticket to a nursing home faster than being stubborn.
Take my advice because I've seen many, many situations like yours. In fact, I let myself get trapped in one with my mother.
Stay strong and stop letting your father's stubbornness make decisions for your life.
If you keep doing things for them, they think they are getting along just fine.
Your parents rely on u because you allow it. I am 74 and no way would I expect my girls, one 38, to be responsible for their Dad. Ur Mom is responsible for Dads care. If SHE cannot handle that care, then he does not come home.
The calls, they have to stop. Tell them complaining to you will not solve the problem. The problem is Dad. Sorry, its what it is. He is a diabetic. My GF was a juvenile diabetic. Serious heart attack in her 50s. Leg amputation because of a sore on her foot that would not heal and gangrene set in. Kidney failure, veins could not take reg dialysis so had to do peritoneal dialysis. This only gave her sometime time. Hospice was brought in, no more dialysis. She passed at 63. When u receive a call, don't answer. My family was not allowed to call me at work unless it was an emergency. Tell them both, stop the complaining. Its what it is and they both have to except that. Tell them the truth that they are driving you crazy.
Inform Dad and Mom that POA does not mean your at their beck and call. That Mom can handle Dads care. Read your POA. Its probably only in effect when Dad is found incompetent. So for now, its Dad and Mom who handle things. You or Sister should never have been made to feel that you were to do everything for Dad. 9 yrs ago your parents weren't even 60. Again, care for Dad was her responsibility.
Its time for boundaries because this is only to get worse. You should not be paying for anything. I think if you can prove to Medicare that a transport is medically needed, they pay for it. I would check with dialysis to find out if they offer anything if found you need this again. And again, you get the information together and give it to Mom and have her make arrangements. There are special phones out there for the deaf.
Might want to read the book Boundaries by Townsend and Cloud. My Mantra...I am here to help people find a way, not be the way.
People like you also respect their kids and their lives. That is a great and wonderful thing.
If only every person my age and younger had parents like you. Neither of my parents had the slighest respect for any of us. My father wasn't petty and unkind like my mother is.
Both of them actually believed all of my life that of course their adult kids would happily be enslaved to their future care needs for as long as they live. They have both said that their kids would take care of them in their old age.
My father died in a nursing home. He was too bad off the last months of his life for homecare to have been an option.
My mother has homecare. If her needs go past what homecare can provide she will also be placed.
So that’s a long ‘tradition’, but nothing like the stress that is being put on younger people like you today. My own grandmother (I get the generations mixed up because I never met the older people) was stuck with being the daughter at home until her own parents died and she could marry at age 40. By then my grandfather was well enough established to marry her, but/and I am sure that the finances on each side were part of it.
So this is the reality behind ‘family always cares’ in our family/ culture.
Just to put more flesh on the bones, my grandfather was born in England when there was compulsory education but you could leave school when you passed the examinations for reading and arithmetic. He passed them aged 8, left school and went to work. His father was the local drunk, his mother made lace all night to sell in the local market. He grew up before radio, and remember songs from one visit to a music hall. My mother remembers getting pressed with bread and fat when they visited his mother, because she thought all children were always hungry.
For you: Don’t get dragged down by (very partial) ‘history’. Thank the lord that we are past it. Do what works best NOW.
We witness our own family dynamics and of course stories are passed down.
I have been working on my genealogy tree for years. The majority of my ancestry is British.
It’s fascinating to see how our ancestors lived.
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.
Since he has an amputation and is not doing well with PT, I doubt he will ever come home. As long as he is in a decent facility, just let the complaining go in one ear and out the other. There are no good solutions in this lousy situation. He's never going to be happy and that's his choice and it's got to be ok. But don't let him take you down with him.
I would get a hospice evaluation. I didn't know people could be on dialysis this long. Does he have a living will? Does he want extraordinary measures taken or is he accepting of the fact that no one lives forever?
I'd get him evaluated for dementia which his constant calls and repetitive questions remind me of from my mom. I understand your frustration. Think of it that your dad's brain is broken. You have to set up ways to protect yourself and your mental/physical health. Expect him to be the way he is and try to not get too frustrated (though I do know it's hard!!!). My mom has dementia and it can be really difficult to deal with but I don't get as frustrated as I used to due to changing my expectations.
Best of luck.
STOP using your money for transportation to dialysis . Who will take care of Dad if he leaves the facility and comes home ?
Sounds like he needs permanent placement in a skilled nursing facility with dialysis . I would push for that.
You are not responsible for paying his funeral either .
Let the phone calls go to message . Listen later and only call back when necessary. You do not have to respond to all the messages .
You are not the complaint department. Decide how many times you want to talk with either or both of them a day and then block their calls for the rest of the day.
You need boundaries. They can and will suck you dry and destroy your life in the process. You don’t deserve that.
You can’t sit by and watch your chance of having a spouse and family pass you by. These are your prime years.
As for a funeral, since he is most likely at the end of his life, he gets a cremation at a low cost facility and a service maybe at a church. 5k tops. It’s not your fault he didn’t care about this.
On second thought, his funeral would be for your stepmother to handle and pay for.
You also need 8-9 hours of quality uninterrupted sleep.
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.
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.
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.
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.
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.
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.
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.
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."
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.