Family members who are contributing very little seem to think this is not so difficult, and I'm just dramatizing. Or they imply I'm not efficient enough (juggling work + caregiving), or they say my negative outlook is the problem etc. They offer suggestions that are impractical because they have no clue of the actual situation here. I try to limit my contact and seek support elsewhere, but that's not always practical as there has to be some contact with family members. It's triggering every single time. Yet outsiders (friends, coworkers etc) are very supportive, validating, and encouraging. I look forward to the day I can walk away from family completely, after my father is gone. Sad but true. Are my family dynamics unique?
My experience is like many others. At the start everyone is "I'll help any time, I will be there for you". Then, silence..... I thought growing up we were a pretty normal family aside from a few issues. Then once mom died the egg cracked. Mom was the glue for the family. One sibling was always wanting to be an only child, the other the boss. I got to take dad in many miles away from friends and family. I'm on my own taking care of dad except for a few times he visited my sibling for a short stay. I have asked for respite time and in 8 years got it once.
The Er visits, the surgeries, the home health care, the rehab stays, the cleaning up of human waste from my floors and bathroom, the dr visits, the rehab visits, the dealing with cars, then damage to cars, taking away his driving privileges, giving him almost half my house to live in, paying all the living expenses. He pays his health care and a few of his bills and uses the rest of his money to go out to lunches and dinners with his GF all while I have to deal with the rest.
I begged and pleaded to have some help but all that gets done is paying for a cell phone once a month.
He came with no assets except a truck and a small SSI check. I get blamed for giving away all his things when the house had to be cleaned out.
In the past 10 years, I have dealt with 3 family deaths, 2 hospice situations, long-distance health care (across the country) 3 estates, Lawyers, accountants, and doctors, and funeral directors and property dissolutions.
I am tired of doing this all on my own so I feel your pain. When I call I get told what to do or nothing. Mostly nothing as there is no communication.
I understand what you are going through, I wish I had an answer for you, I am still looking for my own answer.
My younger brother and his wife have made only tiny attempts to help. It angers me so much, however I have reached a point of feeling indifferent. I don’t wish them harm in anyway, but I am not initiating contact either. It took several years to reach this state.
Younger brother and his wife rarely visit mom. They rarely call, offer to help her (age 90) or bring anything to brighten her day yet they always have an excuse for not helping. They live approximately 20 minutes away and say there is not an easy way to drive to get to mom’s. They both work full time but do not have children at home. In my mind, it is absolutely awful that they treat mom this way. It hurts mom emotionally. She has always been good to them and even allowed them to live rent free for almost two years as they saved for a house. (Evidently, they have forgotten about this.)
My point is some times our families are difficult and as adults we can some times finally see their true personalities. I always thought my family would be here for me. In truth, they abandoned me and left me with all the stress and responsibility involved in 11 years of mom’s care. They do not care about mom or me. I find this extremely sad.
I hope and pray you find a way of coping with your situation. If you need to distance from your family for your own benefit then I encourage you to do that.
Best wishes.
It's concerning that you are in a "very dark place." Tell us more...how was it that YOU were left the responsibility of being your father's 24/7/365 caregiver? Do you live with your father, or does he live with you?
How many siblings do you have? how old is your father? What kinds of caregiving do you do for him?
You have every right to refuse to get involved, just as your siblings have done. And as far as your father refusing outside help? Why does he get to call all the shots?
I suggest trying not to let their opinions get to you so much (easier said than done I know) instead turn it back on them, “I haven’t been able to make that work maybe it’s me, could you come stay with him for a day or two and see if you can get that to work”? Something like that anyway, call them out on their ideas of what would work and challenge them, without actually challenging, to experience what you do. If you get anyone to take you up on that great but don’t expect it. Still even when they don’t take you up on it you have taken the power back for yourself, maybe even take some wind out of their sails but the really important person here is you. By not saying anything and letting them make you feel criticized, angry, frustrated your giving them the power. Try not to do that, find a way to turn the tables at least in your mind without arguing or trying to convince the other person, you are the one that knows best and you are the person who decides what help ideas etc might be worth a try, remember that.
After dad died close to eight years ago, my mom didn't want to let me out of her sight. I am now 66 years old and have been on disability for years. So after I left my job years ago, I have been living trying to take care of my incredibly dysfunctional father, who passed away close to 8 years ago, only to find myself trying to care for my mother. She was a stubborn woman to begin with, but things really reveved up as she grew older and more controlling.. She would not let me downsize and move out of the house. She refused to look at brochures for assisted living.
She could hardly walk but wanted me to drive her for errands, a d if I wanted to get away for awhile, say to look in a craft store or garden nursery, she wantrd to a accompany me and either wait in the car or enter a store immediately needing a seat.
All these outings were accompanied by a growl from her for me not to take all day browsing. I desperately tried to THROW myself into creative type hobbies like going to art stores and garden nurseries. I needed some diversion and pleasure in my life.
She took none of my suggestions that she needed more than the cane she was using ussteadily. When I mentioned a wheelchair or even a rollater with a seat that she already had, she refused. She repeatedly accused me of not being encouraging to her, even though I did not think she was safe with only the cane. Multiple falls, balance problems.
Finally she fell at home in April 2020, and was disagnosrd with vascular dementia, became unable to stand or walk and became totally incontinent. 8
All but one cousin basically Aliented us from the family..
We went through bs snf's for "REHAB" WHEN THERE WAS NOTHING THEY COIULD FEASIBLY DO... THE PALLIATIVE CARE NURSE AT THE HOSPITAL REFUSED HOSPICE..... SAYING IT WAS NORMAL AGING... I called back to complain when I saw the diagnosis of vascular dementia.
A terminal illness.. I got apologies and the palliative care nurse felt terrible that she wasn't able to do a proper workuo
CUOMO WAS HAVING A LOT OF HOSPITALIZED PATIENTS TRANS FERRED TO NURSING HOMES AND MY MO.M WAS ONE OF THEM.
IT has been a GRUESOME SAGA SINCE APRIL 2020 UNTIL SHE DIED IN MARCH 2021 0N HOME HOSPICE. I CHANGED DIAPERS, TRIRD TO FEED AND DRESS HER.
I HARDLY HEARD FROM ALL BUT ONE COUSIN...... WHEN SHE DIED TWO OF MY COUSINS SENT TEXT CONDOLENCES. ONLY.
AS FAR AS HER FRIENDS, WHEN SHE WAS ALIVE SAID. HOW ARE YOU GOING TO MANAGE AS. CAREGIVER? AS FAR AS HELP. ONE FRIEND SAID....
HELP NOT US..
EVERYTHING WAS DOOM... LISTENING TO BIZARREE DELISIONS, HALLUCINATIONS AND ILLUSIONS.
THR SECOND HOSPICE DID HELP OUT BY MAKING SURE I HAD LORAZRPAM AND MORPHIN TO TRY TO EASE HER HORRENDOUS TRANSITION.
AS FAR AS A BRIEF CALL FROM. ONE COUSIN IN A BLUE MOON.
IT WAS ALWAYS CUT SHORT BY THE USUAL I HAVE TO PICK UP MY SON..
WHEN I NEEDED JUST TO TALK, MY MOM'S FIRST COUSIN SNAPPED I AM Faraway. WHY DO YOU LAY THIS ON ME...?
WHY DIDN'T YOU CALL ONE OF MY FIRST COUSINS INSTEAD.... IT'S MY BED TIME AND MY HUSBAND IS CALLING ME...
. GIVE THAT IT WAS TWO HOURS EARLIER AS SHE WAS IN COLORADO AND I LIVE IN NY.
CAREGIVING WAS HARD BUT ONE NIGHT WHEN MY MOM DEVELOPED C DIFFICILE DIARRHEA.. I COULD NOT KEEP UP WITH DIAPER CHANGING AND CLEANLINESS. I CALLED 911 AND WAS MET WITH BITTER NASTY SOCIAL WORKERS AND AN UnCARING ATTENDING.
THE EMOTIONAL AND PHYSICAL AND FINANCIAL COSTS WERE STAGGERING..
FINALLY SHE WAS FORCED TO GO TO. ANOTHER NURSING HOME THE COST OF WHICH WAS EXORBITANT AS THE FIRST SNF USED UP ALL HER REHAB DAYS.
I PULLuD HER OUT AFTER A FEW WEEKS AND GOT A REFUND FOR DAYS NOT USED.
SO I GOT HER HOME On a different hOME HOSPICE AND CHANGED DIAPERS WATCHED HER DYING PROCESS ETC.
HORRIBLE BUT BETTER THAN THE FOR PROFIT NURSING HOMES.
TWO BRIEF TEXTS FROM TWO FIRST COUSINS AFTER SHE DIED....
Your family dynamics are, sadly, very common. I have heard, but now know first hand, that no matter how many children in a family, it will be ONE that becomes the main caregiver. Mom has been with me for over a year and I have long stopped wondering when things would become fair.
I have one sister. I retired a year early to bring mom to my home to take care of her. It was in the middle of COVID, and I was told by a doctor that she had "given up." I was afraid she would die alone in the facility where she was living. And yes, I often tell myself that it was me who decided to do this so I should not complain or expect help from my sister. Our relationship was already strained at the time I moved mom in because even at that time, I felt the burden of watching after mom while she lived in the facility.
My sister worked full time at the time I moved mom in with me so I could not expect much from her. Because I asked, she agreed to take mom every other weekend. She picked mom up around 6:00 - 7:00 on Friday after work and brought her back on Sunday evening around the same time. Now she is retired and has no plans to do more than she is already doing. Anything she does is because I ask - she offers nothing.
At one point I told her I needed more help and her response was to put her back in the facility.
We used to be very close but this has put such a wedge between us that once mom is gone, I feel no need to continue a relationship with her.
My emotions are all over the place: anger, resentment, anxiety, sadness, guilt...
I am now in therapy to sort through all this.
I know that God sees what we caregivers are doing - we're doing His work. We're doing what we are asked to do - serving others.
God Bless you. We can't control what others do. We will only answer for our actions.
agreed!! :)
but i must say, i wish for justice already now.
The credit union called me.
Since my mother was in the car, they had to give it to her.
That triggered another probate hearing and the judge cut her off, 💯.
That’s how much help she was.
Theres the “giver,” and the “greedy”.
One does it all, the others criticize as they wait for the WILL to be read.
My sisters lawyer called the second I walked in the door after she died!
The greediest one ☝️
I was so angry, I gave him my probate attorneys number.
He told him, “good luck getting paid by the sister.”
Not unique.
Family dynamics show who they are, at death.
There is one good son or daughter doing all the work while the rest are free loaders. The only time they call is when they want money.
Personally I do not get support from outsiders either. They offer stupid comment like she is old and set in her ways or oh you are exaggerating, she is a good ol girl or boy. They have no concept of the living hell most of us go through every day
This is a good site to come to for support.
i agree with what you write.
I was in the same situation - also from a large family.
My parents had raised me (and all of us, actually) to take care of family first, so I found myself suffering -when I was going through my biggest nightmare of losing my parents- and my siblings appeared uncaring.
For me the situation got even uglier after my parents passed.
Some people believe forgiving brings peace, but that does not apply to all circumstances.
Even Norman Rockwell had to “stage” those perfect family moments he painted.
When we face life’s greatest challenges, that may be when we learn who our true friends really are . . . And that may be a silver lining - to help guide our future allocation of our own most precious resource - time.
Dont think of your family as dysfunctional - think of those individuals as dysfunctional —even though these are difficult times for you, you are functioning impressively.
Who you regard as your true “family” may change as you go through this life transition.
Embrace help from those kind friends who are brave enough to fly into the eye of the hurricane. You are one of those friends yourself.
When you reflect on these relationships you may learn that these people that are disappointing you were never really there for you before. You may have put them on a pedestal of which, it turns out, they weren’t worthy.
Many of us have been there.
(If people criticize you, they probably recognize that they fall into that other category!)
Nothing like a parent being diagnosed with dementia to compound any dysfunction that there is in a family.
I had to completely detach from mine, the only was I was able to survive. And I still have triggers that send me into a frenzy and irrational thoughts that keep repeating in my brain. I believe in caregiver PTSD. I am sure that is what this is.
I cared for mom for four years and she passed four years ago and I am still recovering from the family dysfunction, which by the was was the hardest part of the caregiving. Good luck, it is the hardest thing I have ever done.
I know this is only hurting me. That I could let them have it with both barrels and they would probably not have a clue what I'm talking about. I resent that as well. I feel nothing but resentment towards my siblings now and I would like to get past it. Not sure how to do that though.
I find myself wanting to even type on this forum every little nasty, uncaring thing they did. Would doing this help? Probably not. But I need to find a way to get this out.
Sorry, forgive my gallows humor....