Family

Hi doggiemom, Alvas on vacation

Hi Alva, I am ok. It is hard to get a job, ugh but I have to remember it has only been three weeks. I have begun therapy so that helps. I am reconnecting with old friends. Mark is still on the hospital as his dialysis has been upped 4 times a week. He is bleeding now when they put the IV so they might need to do a fistula. They are running every scan known to man right now.

Robert is going to let Mark know he will need LTC as his needs are beyond what home health can provide. Mark is a lot weaker and can't carry on too much conversation. I know he wasn't himself as I was w/o a phone for 3 days and he didn't even know.

Way, Wow how did I forget that one!

Let's not forget that sometimes the reason the children can not get along and work together is because the parent is manipulating, pitting children against each other . It's an effective shame, blame, guilt tactic for a parent to get things their way, especially if they identify , and orchestrate and groom the roles each child would play .

My sister told me that my mother recognized I was "the soft one", therefore i was groomed to be the caregiver.

Personally I think this caregiving stuff messes everyone's head up so badly, for so many reasons. Some bail just because they have there own issues, or health issues.

Some bail because the the poa takes over acts controlling or other reasons the can't get along with the POA

Some people are just not ment to be caregivers.

Some have to many resentments towards the person they are caregiving.

It's just so sad why people can't get along. I've been annoyed with my sister for bailing, now I get why she did.

Some might be hiding there secrets and don't want anyone to know

Often family's at this time are just a HUGE mess!

Yes. The caretaking role for my elderly widowed Dad fell to my husband and me. I am so grateful to have my husband's support. My sister has basically written off our father since he was placed in an ALF. Even before that she did the minimum and rarely visited him saying it costs too much and I hate FL. Now we believe she is just waiting for him to pass and collect her inheritance. I no longer have any love for her in my heart. She is selfish. She has been off to Europe this year, the coast of Maine and the Galapagos Islands. We have been spending our time visiting my Dad, bringing him home for dinners every week, taking him to MD appts. and seeing to his needs in addition to clearing out his home and getting it listed and sold. You can't just put someone in assisted living and forget about them which is what my sister has done - washed her hands of things saying he is safe in ALF. I update her with what is going on with him but I do not exchange pleasantries with her. She has shown us no support or help. I suspect my father knows this as well.

Thanks for the update, DoggieMom. Thinking of you and wishing you luck. This is a huge change you have negotiated and I think you did it well. You should give yourself a pat on the back for this.

@Shirley, yes, I would say you are right. One person DOES almost always end up doing "it all" and in all truth, when there are lots of participants it almost always ends up looking more like warfare among themselve than like support in a tough situation. I always wonder why anyone thinks that we would, as countries, get along, when none of us can even manage it in our own families.
I so agree with Beatty that there are complex answers about why it almost always falls to one.

It almost ALWAYS BOILS DOWN TO ONE PERSON AND ALL THE REST OF THE FAMILY DOES IS B**CH!!!!!

Hi Alva, I am doing okay still seeking employment which is a longer process than you’d expect. I am transferring my TX teaching license to NM. I am getting therapy and primary care doctor appointments set up.

Mark is still in the ICU. He is having bleeding problems and his dialysis upped to 4 times a week. Robert is trying to find LTC for Mark since he has complex needs. They are doing a bunch of tests on him.

Doggiemom, how are you doing?
How are Mark and nephew managing?

I think it is a rare situation when the entire family pitches in to be caregivers. I can’t speak for outside the U.S., but families tend to be smaller and more spread out these days. Many families carry abuse, resentment, or lack of money and resources as well. Even a big family is no guarantee of help. Mark has three siblings who are living and there were seven kids. That means a lot of nieces and nephews, but I was the sole caregiver for 3 years.

It seems to me after many years on this Forum that one child often ends up with the care.
It is often the child that tacitly agrees to end up with the care, imho. I was an RN. It was clear to me just doing my career that my limitations would preclude my ever even THINKING About attempting to do long term care for my loved one. I don't know how anyone manages it; to me it would unimaginable.
There are a million and one reasons why one sibling may do care while others don't and they involve everything from loving relationship (or not), expectations, personality, location, job, family and etc.

I find that when siblings do attempt long term care together it often ends in very hard feelings. There is one thread on AC right now, page I, that's pretty much a nightmare in which cops, social workers and attorneys are all called to the fore.

So just my humble opinion offhand.

All on me. After my dad died a sudden unexpected death it caused my mom's dementia to excel fast. Comprehension of the simplest of things became very apparent. I thought it was compounded by depression. They were married 60 years. I have a half sister from Dad's first brief marriage. I am my moms only child.. She has 3 siblings one of which lived in the same state. She came to stay with my mom shortly after losing dad but within days she left. Has not been back. My dad's sisters and a cousin have been to visit. But extended family on her side do not speak to me at all since my dad died. Two of her siblings treat me with distrust and act as though I don't know how to function. I've lived on my own for nearly 45 years. Aside from a 5 year marriage those 45 years was living alone. Put myself thru college, bought my first home at 24. Suddenly uncle calls to tell me that my folks don't me a f*****g dime. Never said they did. I hung up. Half sister stopped talking to me but bad mouthing me. Wow I'm the only one here. In fact I've moved her in with me 6 months ago. This is by far the hardest and loneliest time I've ever experienced. I had my power shut off last week and had to reach out to a local charity. Totally embarrassing. This is really tough. I now have her house on the market. I busted ass painting, scrubbing, shampooing, packing, hauling and my realtor reminds me of the boxes in the garage or the lock needs replacing, Dad's shop is filthy, on and on. She saw the place but made the decision to list before I could finish it all. When I shared that selling the place is sentimental, it was Father's day weekend and when she talks about working hard to sell that house but it stinks like dog urine. She doesn't know hard work till she's cleaning thar up every day and smelling it when the throw rugs are saturated. I've been doing that and so much more for 3 years. Now my own house stinks. No one can possibly understand the physically, mentally and financially exhausting it is to manage your mother's life. No life insurance. 2 mortgages on her home. I had to find out things along the way that was never shared with me while both were alive and healthy. Now my mom is near deaf, has lost over 60 lbs, anemic. Repeats herself and questions. Has delusions and false memories. I can't even reminisce about things or speak of certain friends or family because she doesn't remember. This is beyond exhausting. It's beyond overwhelming. When my dog gets out and I'm chasing her down the road and crying, actually reduced to tears because my full grown pup discovered she can jump the fence. It's one more thing to stress me out. Sometimes it seems as though every day brings about another piece of doo-doo drops on me. My mom has lost her ability to empathize. But she expects me to do everything for her. It's all about her. It amazes me when I'm weedeating in the yard and she's yelling for me from the couch. She messed up the remote and wanted me to un-mess it. OMG you're kidding me. There is not going to be anyone who gets it. People don't want to deal with it nor hear it. Online support groups or a help book after Mom goes to bed. It's all there is. I have no life. No hopes, no friends to have lunch with. It sucks. But at the end of the day...this is my mom,

PS I have been on both sides now.
Being the solo & asking for help & also being rostered against my will. I see there are complex reasons why it does seem to eventually fall to one.

Tiredniece, wow. If there is a prize for the most Non-Stick 'Carer' - your Cousin wins - hands down!

I had some in the running..

A SIL.. I'm making a roster. I can add you & DH. Oh? What about yourself? Me? Oh no, I work. (Nevermind OUR jobs, kids & other committments!)

To her credit, she saw how F.O.G had temporarily blinded her (once pointed out).

A BIL however told me "family helps family". A lovely value. But not HIM helping, no. Nor his wife, or her or her or him etc... Just ME.

I arced up both times. To point out what I considered obvious - I am a woman but I not everybody's work horse.

Now I am so over it I am no longer speaking up.

Grey Rocks! 🪨

Mariavictoria, "my father is a good man and took care of everyone he doesn’t deserve this treatment."
😢💔 I feel the same.
(((Hugs))) to you both

LOL. They (family) tried with me. They really did. Cousin called me. I live five hours away, she lives 45 minutes away from aunt. Fine. She says, "Cousin, aunt needs help. WE have to work out a schedule. But I can only come one day a week for an hour. Can you stay a week or longer? I have work and I am trying to balance family, also" Huh? What? I don't work? So, I come out to help aunt as best as I can. Cousin comes by checking on things. "Why is this? Did you do that? Are you cooking for her? Did you help her with her taxes? Are you putting her in the shower?Oh. Can you possibly stay longer? I have to go to work." Again. I don't work, too?
No one was sacrificing themselves but me. Guess who walked away?

Way,

Isn it ridiculous that your siblings behaved that way at your mom’s funeral?

Critics always think that they know best, when in reality they don’t have a clue. It’s always unnerving to see this.

I have a brother who can’t handle seeing people who are dying.

The hospice nurse said not to try and force him to visit my mom any more than he could. I told my other brothers to ease up on him.

At my mother’s funeral , one of my siblings that did absolutely nothing other than armchair criticize from 3 hours away , spoke about how “ We “ took care of Mom. Infuriating to say the least .

Another sibling for some odd reason got it in his head that he visited often . In reality he didn’t visit for 5 years straight . And he only called occassionally when he wife forced him to . The wife told me that my brother could not watch his parents decline .

That’s fine. I never asked for help , nor did I ask them to call or visit , but don’t make up stories after the funeral either was my thought .

You’ll get through this. (((Hugs)))

Thank you everyone for your life stories and advice! I think my profile says that my dad is still living with me he is not though he has been in a skilled nursing home for three years. I am his medical and financial power of attorney and am visiting all the time and doing doctors appointments and care plan meetings . I don’t mind doing all of this I love my father deeply but I still feel a great sense of resentment towards one of my brothers and my fathers immediate family for never coming around and never asking about him even though they all live 30 mins away from him. This is hard to shake no matter how many times I try to reason with it and I’ve just come to the conclusion that I love my dad so much that is it truly insulting that these people don’t care and that’s ok. They’re allowed not to care certainly but I don’t have to be happy about it and they don’t have to have access to my life to know about what’s going on with me it is their choice to not be around and I respect that I’ve stopped inviting them to come see him (because either they don’t answer me or they come up with an excuse last minute not to come) and I’ve stopped asking them to call him because they never do. I feel so terribly that they treat him like this he deserves to have family around and I’m sorry that they are not better people. A good friend of mine always says that I am enough in terms of visiting and being around and calling but my heart breaks for him my father is a good man and took care of everyone he doesn’t deserve this treatment.

In my situation, I have two siblings. I live on the West Coast. Parents and siblings live in NYC. My one sister was so angry with my mother who had gotten nasty with her and threw her walker at her that she decided right then and there not to help anymore. That's when caregiving fell on my other sister who was getting burned out. Between doctor appointments, dealing with health and house crises it became too much. I retired and began spending every other month in NYC so she could have a life. I thought I'd be done with this chapter of my life, but three years have come and gone and they are still here at age 96 and not in a good way. Both are now thankfully in a SNF.

It is up to each individual member of any family to decide how much they are willing to put into caregiving an elder.
I spent my career as an RN. I loved it. 3 days a week, 12 days ill time, 12 days personal and holidays, 5 weeks vacation. Doesn't get better than that. But even at THAT I would not ever have been capable of 24/7 caregiving for anyone. I had the best mom and dad, the best brother in the world, but I would not have moved from daughter/sister to caregiver for all the world.

Many of our Forum members had cruel, even negligent parents, who expect their children to sacrifice their own lives on their burning funeral pyres. I feel dreadfully sorry for those who accept such assignations.

Caregiving, and what you do about it is an INDIVIDUAL decision. As individual as whether you will mask or you will not. Whether you will vote democratic or republican. Whether you will keep a gun or you will not. It is not the business of anyone else, including family.

That's how I feel about it. I think that any parent who expects a child to sacrifice themselves and their own family, their own lives is selfish. The obligation of parenthood is played forward, imho, not backward. I served as POA and Trustee for my brother. He did not expect (or actually want) to move in with me and my family; he chose his own ALF. I helped him all I could. And there was no one to pick up any slack I may have experienced in attempting to do what I could for him.

Again, as I have already said to one caregiver today. It is up to you to decide for yourself. Picking up judgement, squabbling, angst, anger about a sibling is a waste of time when there is already so much on the plate you chose.

I am sorry to be so brusk about it, but we simply cannot make life decisions for others, nor know their reasons. That's my personal opinion. It isn't our business. That's my personal opinion.

I was that one until the POA told myself & others how & when he wanted things done.

I stepped aside & let him handle everything from then on.

Don’t do any caregiving unless you’re the one with medical & financial POA.

I did 95% of the work for both my parents . And my husband and I did all the work for my father in law .

It does seem from other threads here that it mostly falls on one person.

If there are families out there able to share the work , we may not be hearing much about it , could be they aren’t coming to this Forum burnt .

The only way you could divide caregiving equitably would be to rotate through tasks either by moving the person cared for or by taking turns at their residence, and that is seldom practical or sustainable. Splitting the actual physical care from the administrative work might lighten the load for the hands on caregiver but the two tasks are not equal.
I did it all but other than feeling that my sib just didn't get it I was not really resentful because I owned my choice, my mom could have gone into the nursing home 5 years sooner but I chose to keep her home. That's not to say I didn't burn out and am deeply scarred by my choice because I am, but none of that is anyone's fault, it just that I had no idea how incredibly physically and mentally difficult caregiving would become and like the frog in the boiling water I didn't immediately recognize when I'd reached my limits. 🤷‍♀️

It generally falls on one person - either literally - or by way of coordinating.

In our case - it was by default - because SIL and her DH moved in with FIL a number of years before he actually needed care (because they found themselves in a bad place and needed a roof over their heads) and because they were already there 24/7 and we were an hour away - the bulk of the hands on care fell to them - and to SIL primary because he was her father and because her DH was gone during the day to work outside of the home and she wasn't.

That doesn't mean we didn't help. And the reality is that before they moved in - when he did need help - we did the lion's share of the helping. Once they were living there, we did as much as we possibly could for two adults still working full time and with a family at home who still needed us, including my own mother and grandmother.

So while I have never been "the person" - my mom has and my SIL has and I have done everything in my power to take as much weight off of their shoulders as I possibly could.

BUT I will also say this - weight is rarely distributed. AND I also believe that children do not have to be the ones to carry all of the weight. If caregiving for a parent or loved one is simply too much (or even something you just can't do) there is literally no shame in not doing or finding someone else to do it in your place.

With medical science making it easier for people to LIVE longer, but not yet having any way to stop the impact of cognition degradation or improve the actual QUALITY of that life, and many seniors either not choosing to invest in LTD insurance or having the ability to invest in it, families are finding themselves more and more on the hook for longer and longer to care for aging family members when they themselves are at an age when they would qualify to be cared for. You add in deep set mindsets, stubbornness, long held instilled guilt, feelings of failing the parent, etc - and it makes for a really nasty situation where the adult children may feel trapped.

My own mom - who is 77 - spent nearly 10 years caregiving for my dad when they should have been able to enjoy their well earned retirement years. Dad passed away almost 7 years ago and mom thought she might be able to get her feet under her again and get some time to travel and enjoy her golden years. COVID hit, yadda yadda. Three years ago she ended up moving in with my grandmother "temporarily". She hasn't moved back out.

My grandmother is 98 and has enough LTD insurance to cover herself, my mother and probably ME for rest of our lives. But she refuses to use a penny of it. She and my grandfather have been paying for it for YEARS. But she won't use it because she won't let anyone help her but my mother. She won't even let me help. So a SNF is out of the question and mom won't push. So mom is drained mentally and physically -and it makes me incredibly angry - because while I love my grandmother- it is absolutely NOT fair to my mother - who could have every resource available to help them both but my grandmother won't allow it.

So yes, I think there is always one responsible - but I can also see both sides, why siblings may balk at helping because they know what will happen when everyone starts propping the parents up, and hope that if they don't help the last sibling standing might be forced to get help outside by default. I don't know- it rarely works and the last sibling just takes it all. But that may be why the others run too.

My siblings came up with all types of excuses not to caretake my younger sister. Their excuses were; we have families, we have to work or just plain ignoring me and the entire situation. I remember they were taking trips with dad and his new wife to Disney World and traveling while I was left home struggling with a full time job, classes, mountains of housework and the care of my sister and my daughter. My older sister didn't want me in the house after mom died and started making up all sorts of lies on me. She was calling APS pretending to be my younger sister saying that I was starving her to death. When I confronted older sister about this, of course she lied. She said the stepmother did it, and another time said an old ex of mine called to get off the hook. Older sister had stopped paying her rent because I was still in the family home, and she wanted to move in too. In all due honesty, she was more of a problem to me than my diasabled sister. After awhile, I got tired of the nonsense from that entire family and moved after placement of my sister. It was the best for everyone involved.

Yes it does, but after being burntout, and lost it, my older brother is helping alot, goes at night to moms watches Hallmark with her, 3 or 4 nights a week.

He told me he is even starting to like Hallmark movies lol

But my other brother does do stuff , but he 2 very busy jobs, and some major health stuff. What bugs me is he tells everyone he does it all! And he tells everyone, I do this, I do that, goes on and on. But never wonders who is doing this and that when he is gone for months a year.

I get why my sister doesn't come around, I totally get it. I think some of my resentments to her where jealousy, if anything.

When she does show and help once in a while, I've learned to be greatfull, of that one day I didn't have to worry, I do really wish it was a bit more consistent, once a month, and especially when my brother is off on one of his many trips but any help is help now. I really do wish my sister would stop calling mom, dumping her issues on her. That makes me angry. But it is what it is.

I've learned not to be angry at her. I do get angry at my brother that tells the world he does everything.

Caregiving usually falls on One person . I had to go to the Chiropractor several times and my chiropractor would Know and he said " From what I have Noticed caregiving always falls on one person . "

I think you know the answer to your question.

Of course, there is usually one person in the family that does the majority, if not all, of the caregiving.

It’s extremely frustrating to be the primary caregiver.

I am sure that you know that you have absolutely no control over your siblings’ lives. It’s futile to dwell on the lack of help from your siblings.

Start focusing on what will help you now and in the future.

Know your limitations. Don’t neglect your own needs. How can you continue to care for your dad if you become overwhelmed or in need of care for yourself?

Your profile says that you are caring for your father who has Alzheimer’s disease in your home.

I cared for my mother in my home, so I understand how challenging it is to be a caregiver.

Have you considered placing your dad in a facility? Do you have any outside help?

Wishing you peace as you continue on your caregiving journey.