Guilt v. Helping Loved Ones - fear of being tied down

[CaliKid]

We have one of our parent's here locally near us. There is another child locally but they are not as equipped (financially or emotionally) to help with that parent. Parent is in their 70's and moderately healthy. We do not want to stay here and be the caretaker but we both feel guilty about it. Well, some days feel guilty and some days want to leave quickly, and move to another state, before we become the full time caretaker. We will end up financially caring for this parent because they didn't save any money and that's fine. Is what it is. However, we don't want the emotional toll/time suck of being the physical caretaker. It feels wrong as I type it. I suppose my question is if any of you ended up in long term caretaker situations and you resent it, are happy you did it, or other!? I have a cousin who has ended up as caretaker for their mom who is over 100 and I can tell they resent it a little bit. Love it at times but get tired of it at times. I suppose I am feeling selfish but I want to live my life. Would love to hear of your experiences.

 

[gwraigty]

You'll find some interesting perspectives in http://www.early-retirement.org/forums/f26/giving-it-all-up-to-be-with-the-old-mum-97993.html

I've been involved in various caregiving scenarios starting in my childhood/teenage years. The most notable one was caring for my mother. The situation was extra complicated due to her mental illness, drug addiction, and general refusal to care for herself in any way, shape, or form. She took pleasure in making life miserable for most everyone and didn't care that she was a burden on my grandparents. When I was 16, she was diagnosed with cancer, right when I started working full-time. After paying for my car and insurance, every last cent went towards paying her bills. She was initially given 6 months to live. She died 11 years later. Yes, I resented the financial and emotional toll it took on me. She insisted on staying at home, which placed me and my grandparents in the role of caregivers, which we weren't in any way qualified to handle. Because of her, I didn't have a life until after she died. Pardon my bluntness, but it's true.

As for relatives that didn't deliberately try to be difficult, I was involved in helping out with a great-grandmother and a step-great-grandfather. (Not married to each other.) Both were dearly loved, but it was still tough. My great-grandmother declined due to dementia and became totally unable to care for herself. She should have been placed in a nursing home long before she eventually wound up there, but her husband wouldn't hear of it. Eventually, circumstances arose that took matters out of his hands. I know that my grandmother came to resent her step-father for dragging her into such a strenuous caregiving role instead of getting my great-grandmother the professional help that she'd needed for so long. It really took a toll on her.

My step-great-grandfather came to live with us for about a year. The last 3 months were difficult. He went from getting around well with a walker to needing to use a potty chair bedside. He remained of sound mind until nearly the end. Near the end, he would stay awake all night making noise. I loved him dearly, but I remember waking up crying because I worked all day and was becoming exhausted because of him making noise all night. He died just short of 101.

Trust me. Leave the caregiving of the dying and/or elderly to the professionals.

 

[CindyBlue]

I'm going through the same thing... you couldn't have said it better.
I am struggling with the guilt of not wanting to be tied down again just as we are finally retiring, and the pull of responsibility as my dad and his wife decline in their mental health. We really only finally figured out their decline in mental condition last December, and have since been frantically trying to put the financial pieces back together ever since - we think we might finally have gotten a tentative handle on it. But they have no money, which makes us financially responsible, and, right or wrong, I resent that I might have to spend my dearly and carefully saved retirement money (just enough, no extra) to take care of them. We are dealing with their health issues, too, and their driving issues. And they do all sorts of things that undermine many of the things that we are trying to take care of for them. They have proven the they can't take care of these things themselves, but they think they can, and get resentful when we have to do it.
I keep looking online at house properties at least two states away. I am feeling sorry for myself, and trapped, and feel terribly guilty about feeing that way. I'm hoping that the stresses of retiring, with all the doubts I'm having about doing so, will ease up when I actually do retire in about two weeks, and maybe help my anxious feelings about the parent situation to ease up, too.
Meanwhile, it felt good to finally be able to say this "out loud" - thank you, CaliKid, for bringing up this topic.

 

[youbet]

The "help arrow" can point in the other direction too....... Or in both generational directions for that matter.......

Staying local to help an adult child with his/her special needs child can be as confining as being responsible for a declining parent. We'd prefer to live in another area but leaving a physically/cognitively challenged grandchild behind hasn't been possible emotionally for us. But we make the best of it and as an extended family, I think we're doing a good job of sharing the ups and downs of the situation.

We were also part of the "squeeze generation" while MIL spent 4+ years in a local NH causing us to split time between her and our special needs grandchild. MIL's situation involved many hours of planning and visiting but we were able to avoid too much financial involvement or having her live with us.

Everyone has to make their own decisions and take responsibility for their involvement (or lack of involvement) in these situations. But, no doubt, talking about it can be helpful.

 

[anethum]

I Fire'd 7 years ago. I live 10 minutes from my parents, as does my brother. My dad's vascular dementia began 2 years before I Fire'd when he turned 90. My mom was still in great shape and started doing most of the things that my dad used to do, with help from me. When my dad turned 94, he had a serious stroke and needed skilled nursing care 24/7 but remained at home where he died 8 months later.

I had a very brief window after settling my dad's estate and death-related matters before my mom's dementia began. She started to phone me every single evening (up to 5 times) because she couldn't find my dad. I was going crazy. I'd sometimes get calls or texts from her next-door neighbor because she saw my mom in the yard looking for my dad in the dark. My mom never called my brother, because she knew he'd just yell at her. My mom wouldn't accept any help at home. My brother, who did nothing whatsoever to help, nonetheless was against her moving. Nearly 18 months of hell later, my mom fell and fractured her pelvis & a wrist. I found her on the floor. (My brother didn't see any reason for her to go to the ER!) 24 days later after coming home from the hospital and rehabilitation, she had to accept home care.

She's now had 24/7 home care for nearly 2 1/2 years. Mom is 97 and no longer walks well. She sleeps more and more, but she has no known underlying health issues. Her dementia has gradually gotten worse. My parents LBYM'd so there is still money to pay for this homecare for a few more years. I have to handle all the finances, buy all of her food and household items, prepare her dinners (I'll make enough for a week's dinners and put things in her freezer), pay the caregivers, pick up her drugs, take her to doctor appts, fix things in her home or arrange for someone to fix them, and on and on.

Am I resentful? Very resentful toward my brother and his wife who don't do a damn thing and are nasty about it. You wouldn't believe the stories I could tell. Both of my parents did so much to help them, as well as me.

Lately, I've begun to get a bit resentful toward my mom for never considering moving out of the house, which she's lived in for over 60 years. However, I had great parents. Both were supportive, loving, and just plain good people. Fortunately, neither of my parents got angry or nasty as their dementia worsened. Mom is appreciative and thankful for what I do, but she's more and more confused. I tell myself that if it gets to the point where she no longer recognizes me, then it will be time for a nursing home. Will I be willing to do that? I hope I don't have to make that decision.

 

[ivinsfan]

I'm going through the same thing... you couldn't have said it better.
I am struggling with the guilt of not wanting to be tied down again just as we are finally retiring, and the pull of responsibility as my dad and his wife decline in their mental health. We really only finally figured out their decline in mental condition last December, and have since been frantically trying to put the financial pieces back together ever since - we think we might finally have gotten a tentative handle on it. But they have no money, which makes us financially responsible, and, right or wrong, I resent that I might have to spend my dearly and carefully saved retirement money (just enough, no extra) to take care of them. We are dealing with their health issues, too, and their driving issues. And they do all sorts of things that undermine many of the things that we are trying to take care of for them. They have proven the they can't take care of these things themselves, but they think they can, and get resentful when we have to do it.
I keep looking online at house properties at least two states away. I am feeling sorry for myself, and trapped, and feel terribly guilty about feeing that way. I'm hoping that the stresses of retiring, with all the doubts I'm having about doing so, will ease up when I actually do retire in about two weeks, and maybe help my anxious feelings about the parent situation to ease up, too.
Meanwhile, it felt good to finally be able to say this "out loud" - thank you, CaliKid, for bringing up this topic.

This is a sad and familiar story. But you are not required to take care of them financially , even though that what you think right now. Maybe put food in the fridge and contact senior ride share services for trips to the doctor. Start looking into possible low cost senior housing or assisted living. I believe older people without mental impairment and some funds should to able to determine the course of their final years. When mental impairment and poverty are in the picture, bring in the government programs and let them work.

After you retire spend a few bucks on and eldercare attorney who will help you navigate the ins and outs. Every time you start to feel guilty stop and tell yourself, I can't impoverish myself or ruin my health both physical and mental over this issue. The correct solution has to work for everyone not just the aging.

If you doubt my comments just read post 2 ,3 and 5...notice dementia is a very common thread and in my personal experience dementia patients do better in a controlled setting with same type of constant and calm supervision. Is it perfect. no but IMO better then the alternative .

 

[ivinsfan]

anethum, so you actually have another full time job..except...you don't get paid, you are on call 24/7, since you care for a person with dementia no interaction is really pleasant (some are less stressful then others)…

you also have a family estrangement that probably won't improve after the death of your parent. Your last comment about waiting until she doesn't recognize you to relocate her is misguided IMO. Although she may not express happiness about moving right now, getting her into a place while she can still interact with people, become familiar with the routine and have you there visiting and assuring her you love her and she will be safe and happy here, is a better way to go FOR BOTH OF YOU...

 

[SumDay]

If you're not wired and/or willing to perform this daunting task, it will take a great toll on you - mentally, physically and financially. And you'll never feel like you did enough or that what you did do was right. It's an impossible situation, and you need to do what you know you can handle. It may not make you feel great about yourself, but it may be what preserves your sanity. I say all this speaking from experience.

 

[Mr._Graybeard]

This is a sad and familiar story. But you are not required to take care of them financially , even though that what you think right now. Maybe put food in the fridge and contact senior ride share services for trips to the doctor. Start looking into possible low cost senior housing or assisted living. I believe older people without mental impairment and some funds should to able to determine the course of their final years. When mental impairment and poverty are in the picture, bring in the government programs and let them work.

After you retire spend a few bucks on and eldercare attorney who will help you navigate the ins and outs. Every time you start to feel guilty stop and tell yourself, I can't impoverish myself or ruin my health both physical and mental over this issue. The correct solution has to work for everyone not just the aging.

If you doubt my comments just read post 2 ,3 and 5...notice dementia is a very common thread and in my personal experience dementia patients do better in a controlled setting with same type of constant and calm supervision. Is it perfect. no but IMO better then the alternative .

Yes. When my mom was failing she told my sister and me that she and Dad had agreed that they did not want to burden us in their final years. I think most parents would agree with their position if they were thinking clearly. Of course you can't turn your back on them, but you can't place their well-being above your own.

If the OP is prepared to support this parent financially, which is quite generous of him/her, I would think a continuing-care facility would be the answer. Enter while living independently and receive extra care as needs increase. The parent may not need it yet, buy now may be the time to start shopping around.

 

[ivinsfan]

Sumday, if a person doesn't feel some guilt in this situation they aren't human. It's fricking hard. That's a sign you care about the people in your life, it's a good thing. Don't let those feelings prevent you from realizing you are important to yourself and to the other people in your life.

I think a local support group or even individual counseling can help people accept this. I wish I had explored this when the wheels came off with both my DM and MIL within 12 months.

 

[Mdlerth]

Fate worse than death

This thread resonates with me, too. May all you other posters find the strength and wisdom you need to make the right decisions.

My own parents are like a really dark Grimm's fairy tale in which a happy, married couple find a magic talisman that grants them a wish. They wish to live together forever.

But it turns out to be a curse, as they grow older and weaker and sicker but keep lingering.

They live out of state from any of their children, but it hardly matters because they are so far beyond the ability of amateurs to care for them. Before they slipped past the point of no return, I offered to have them move in with me, but they refused, angrily. "We're fine," was their standard response, even though they were not fine at all.

Whether through deception or dementia, they always neglected to mention their constant trips to the local emergency room. Falls, dehydration, bouncing blood sugar, randomly taking medications... they couldn't begin to take care of themselves.

Eventually the state Social Services intervened, placing them in the local nursing home in their town. If not for round-the-clock medical supervision, they'd already have crossed the river Styx.

But I can no more fix what's wrong with them than I can control the weather. All I can do is hope and pray it doesn't last much longer.

 

[Souschef]

My heart goes out to all of you. Fortunately, my mom had all her marbles until a week before she died. I live on the West Coast, my sis is in NY, and mom was in Florida.
We arranged to have 24 hr coverage for her until her money ran out
My sis and BIL bless their hearts, did most of the heavy lifting as far as managing her finances and visiting her a couple times a year.
She was finally moved to a SNF, and we both came down for her 102nd birthday. I think she was waiting to see us one last time, as she passed away 2 days later,

 

[nhcycling]

I cared for both my dad and mom as their health declined. There are 5 of us kids, all local. First with my dad, I helped my mom a great deal over a few years, he had COPD, congestive heart failure, kidney failure along with a number of other physical ailments but completely mentally competent and pleasant. The last 6 months I took a leave from my job and that was tough financially as I had 2 in college to support and a sole provider for them. None of my siblings stepped up to help. I would do it again for my dad but wasn’t so pleased with siblings at the time. My mom had dementia that seemed to progress quickly, lived at home for a couple years and two of my brothers stepped up during that time with me to handle the care. She eventually went to a dementia unit and nursing home and it was up to me then handle everything, my siblings just stepped away completely for months until I called them the night before she died and told them it was time to say their last goodbyes. This I found most stressful and was resentful of my siblings. I’d go every single day for hours to visit, I wanted mom to know that someone was there for her and she was not forgotten. I’d do it again.

 

[kgtest]

I struggle with this and folks are 68 and fairly competent. I am executor. I give monthly updates on NW although DF is literally lieing to himself. He's a multi-millionaire but for instance the other day he was talking about re-doing his kitchen. He is going to do it himself and said to me "I suppose if I were a millionaire I would hire this out." What, dad, you ARE a millionaire LMAO...I sent him a screenshot of the balances to remind him.

Sooo, guess who is going to help resurface the cabinets...and listen to Mom complain while it takes forever and looks like crap. Yepp, dad's favorite son. AND, if I don't help, guess who's character gets assassinated throughout the family gossip tree, yepp you guessed it, yours truly.

This happens every summer. Really frustrating since I have kids 2 and 4 just trying to do the best to raise them and have fun when they are little ones but damned if my folks priorities don't get in our way.

FIL literally never asks for his sons help. Maybe to life a heavy object from time to time.

Mom has COPD and sleeps half the day, Dad has failing knee and hobbles around refusing to rest. :facepalm I digress. Yeah the future looks awesome lol.

 

[Spock]

Dear old Dad has had two parking lot accidents in 6 months causing 5K of damage, has double vision, and no depth perception, but he is still allowed to drive.


When in the hospital for a skull fracture from a fall, Dear old Dad knows the acronym "AMA - Against Medical Advice"... he didn't understand that he needed to be moved to another hospital to be evaluated before treatment could start... he refused and discharged himself AMA.

His will/trust states I have POA AFTER his Dr signs a letter stating dad is no longer competent... how ever the hospital dr, hospital case worker, AND his PCP all state:
"He is still making decisions, they are just bad decisions".


Meanwhile he "donates" 40% of his income to scam charities and elderly targeted fear mongering (he gets 2 inches of junk mail per DAY asking for money... a list that grows as he responds to ALL of it)... yet expects me to do everything for free (I'm involuntarily unemployed, not retired). Sometimes he sends the same "charity" multiple checks per week because he forgot he already sent them one.

As part of his bad memory is he makes up stuff to fill the missing gaps, and what he makes up is "YOU did it!"... or worse he hallucinates memories of assaults that never happened.

Our lives are on hold... next month I will miss my 40th high school reunion because I have to be here to help him. He and I were never close, so the resentment is strong. He's 84 and the thought that this could go on (and only get worse) for another 10+ years is depressing. Yet the guilt for being resentful is equally as strong.

 

[youbet]

Much of this discussion reminds me of why I'm 100% OK with the caregiver child receiving all or most of any inheritance or being compensated very generously during the caregiving period. Siblings who feel shorted when the caregiving child is "taken care of" in the final bequest or through compensation should have been more available to help.

 

[gwraigty]

Really frustrating since I have kids 2 and 4 just trying to do the best to raise them and have fun when they are little ones but damned if my folks priorities don't get in our way.

You reminded me of my last caregiving episode that I neglected to mention in post #2.

My daughter had just turned 3 a couple of weeks before my grandfather died in 1998. My son was 7 months old. That night, my grandmother was in shock and a big mistake was made, IMO. Her son and DIL immediately told her that she would be living with them from now on. They whisked her away from the house, my childhood home, almost as soon as my grandfather had been whisked away in a body bag, from what I was told. No time for her to think or process anything. I only learned of everything the next morning.

Immediately the conflicts started between them. After hearing of the squabbles for several weeks and relating them to my husband, he suggested that we give them all a break and have grandma come to stay with us on the weekends. My grandparents, besides raising me (because of said mother's condition per post #2), had been an integral part of my kids' lives since birth. It seemed like a win-win!

Nope. Over the next few years, the squabbles between her and her son/DIL continued and escalated to the point that she was spending more time at our house than theirs. She started becoming hostile with me. She was continually angry and complaining. She lost interest in the kids. I was concerned about her behavior, especially in front of them. Having her was becoming unbearable. This was not any way I'd ever expected to feel about her. She became a totally different person from the woman I'd always known. I'll leave out other complicated details, but...

Fast forward to a heart attack, a trip to the hospital, and the next thing I knew, I was charged by the hospital staff with picking out a nursing home for her with less than a day's notice! I got the call in the afternoon and they wanted to discharge her to a nursing home the next morning! Somehow, I did it, with my 4 year old underfoot.

She was greeted by the nursing home staff so warmly when she arrived. Within a few weeks, there was a definite chill when the staff came into her room. She'd been becoming as difficult, angry, hostile, with them as she'd been with us. After she was in the nursing home for a few months, they said she had dementia. That explained her personality change.

Sadly, eventually, I had to walk away. Yes, I felt guilty. I had to bring my son with me on the visits and her unrelenting hostility towards me was evident. This was not the woman who'd lovingly sacrificed to raise me. She'd become a stranger. Ironically, when she was dragged into becoming caregiver to her mother so many decades earlier, she'd said how fortunate it was that her mother hadn't become an angry or violent person, because sometimes that happens. If she could have foreseen it would happen to her decades later, she would have been appalled.

 

[CindyBlue]

This is a sad and familiar story. But you are not required to take care of them financially , even though that what you think right now. Maybe put food in the fridge and contact senior ride share services for trips to the doctor. Start looking into possible low cost senior housing or assisted living. I believe older people without mental impairment and some funds should to able to determine the course of their final years. When mental impairment and poverty are in the picture, bring in the government programs and let them work.

After you retire spend a few bucks on and eldercare attorney who will help you navigate the ins and outs. Every time you start to feel guilty stop and tell yourself, I can't impoverish myself or ruin my health both physical and mental over this issue. The correct solution has to work for everyone not just the aging.

If you doubt my comments just read post 2 ,3 and 5...notice dementia is a very common thread and in my personal experience dementia patients do better in a controlled setting with same type of constant and calm supervision. Is it perfect. no but IMO better then the alternative .

Thank you for your thoughtful post.
My biggest issue is that they have no money. How can they afford to go into an assisted living place, or get home health care, if all they have is their social security, and that's not much? Who pays? Is it me? And if I do, my retirement funds will be seriously if not totally depleted. What do people DO in this situation?

 

[Spock]

Thank you for your thoughtful post.
My biggest issue is that they have no money. How can they afford to go into an assisted living place, or get home health care, if all they have is their social security, and that's not much? Who pays? Is it me? And if I do, my retirement funds will be seriously if not totally depleted. What do people DO in this situation?

Check out medicaid (not medicare) facilities.
https://www.medicaid.gov/medicaid/ltss/institutional/nursing/index.html

 

[CindyBlue]

Thank you...I've been reading about that too. I've also read that many assisted living places are not accepting Medicaid patients any more, because they don't get paid enough by the government to accept them. I'll have to sell their home to pay for it, which I can't do until they leave for an assisted living place...which means "good luck to me" getting them to go. I don't want to leave them without help but it's getting to be more than I can provide, andthey won't even consider going to assisted living. How do you, God forbid, "force" them to go?

 

[ivinsfan]

Much of this discussion reminds me of why I'm 100% OK with the caregiver child receiving all or most of any inheritance or being compensated very generously during the caregiving period. Siblings who feel shorted when the caregiving child is "taken care of" in the final bequest or through compensation should have been more available to help.

That's a nice thought but in a dire situation the caretaker doesn't give a chap about how much they will get after you die. Instead take the child or two that you feel is most like you and give them all the medical and legal power necessary to make decisions on your behalf. Tell them I trust you and even if I complain about these decisions just do it and know that I trust you to do best for BOTH of us.

 

[ivinsfan]

Thank you for your thoughtful post.
My biggest issue is that they have no money. How can they afford to go into an assisted living place, or get home health care, if all they have is their social security, and that's not much? Who pays? Is it me? And if I do, my retirement funds will be seriously if not totally depleted. What do people DO in this situation?

Do you have a few bucks for an eldercare attorney? Spend it and they will start guiding you through this process. The government expects all their money to go to their care. It does not expect your money to go to their care...unless they have given you cash gifts in the last five years....please call an attorney, eldercare attorneys are a special breed IMO...

Having the R and R's spelled out for you at the beginning of this journey is of great value.

 

[ivinsfan]

Thank you...I've been reading about that too. I've also read that many assisted living places are not accepting Medicaid patients any more, because they don't get paid enough by the government to accept them. I'll have to sell their home to pay for it, which I can't do until they leave for an assisted living place...which means "good luck to me" getting them to go. I don't want to leave them without help but it's getting to be more than I can provide, andthey won't even consider going to assisted living. How do you, God forbid, "force" them to go?

Cindy you are jumping ahead here. one step at a time, otherwise it's absolutely overwhelming. Don't read stuff on the net, just call an eldercare attorney.

 

[Spock]

Thank you...I've been reading about that too. I've also read that many assisted living places are not accepting Medicaid patients any more, because they don't get paid enough by the government to accept them. I'll have to sell their home to pay for it, which I can't do until they leave for an assisted living place...which means "good luck to me" getting them to go. I don't want to leave them without help but it's getting to be more than I can provide, andthey won't even consider going to assisted living. How do you, God forbid, "force" them to go?

It does reduce your selection, but there are facilities out there. Start with finding facilities that accept it, and then work through those to find out which have open beds.
https://www.medicare.gov/nursinghomecompare/search.html?
https://www.medicaidplanningassistance.org/find-medicaid-nursing-homes

I am unclear as to medicaid and assisted living, I've only looked at it from a skilled nursing facility stand point.


As far as how to get them to into the facility, that will depend on individual circumstance. At this point, I'm stuck with getting them declared legally incompetent first before I can do anything. There are stories of those who have tricked parents into going... others have been able to take them on a tour of a facility or a "try it you'll like it" stay. But I haven't figured out a way to get a uncooperative parent into a safer environment against their will.

 

[youbet]

That's a nice thought but in a dire situation the caretaker doesn't give a chap about how much they will get after you die. Instead take the child or two that you feel is most like you and give them all the medical and legal power necessary to make decisions on your behalf. Tell them I trust you and even if I complain about these decisions just do it and know that I trust you to do best for BOTH of us.

Huh? Your comment sounds as though you're referring to some post other than mine........ Or you're reading something into my post that isn't there.

I'm simply saying that I'm completely OK with it when I hear about a caregiver child being compensated at the time, or later via an unequally divided inheritance, to the detriment of siblings who chose not to participate in caregiving.