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

[Bamaman]

There have been so many good stories here. I am so sorry that there are so many negative stories about dealing with the elderly.

When they are no longer capable of taking care of themselves, we children sometimes have to read them the riot act--and make the.best decisions for their well being. My cousin and I had to move out aunt 2 hours into assisted living in her home town. Had she not been compliant, we would have taken her into Circuit Court. She ended up telling every person she came in contact with that her nephews kidnapped her and brought her to this awful place--her home town. Our aunt lasted 12 years--3 years in full nursing home care and was 99 3/4 years old. We were thankful she was fiscally independent and left a substantial estate that made retirement easy for us.

My mother had the perfect retirement with great friends, the lake life and a great CCRC for her last 2 years. She had 24/7/365 help watching after her and she had no idea she was down to her last $5,000 when she suddenly passed at age 91.

 

[Teacher Terry]

I actually disagree with forcing people to move. My mom wasn’t as safe as she would have been in a home but much happier. Now if someone has bad dementia that’s different. We told my mom to keep her cell phone in her pocket at all times in case she fell. She didn’t and laid for 24 hours until her sister went into her apartment and found her. Went to hospice and died a week later. None of us lived in town but her sister lived across the hall and saw her daily. My sister lived a hour away and called daily. She fell in between the calls.

 

[ivinsfan]

There have been so many good stories here. I am so sorry that there are so many negative stories about dealing with the elderly.

When they are no longer capable of taking care of themselves, we children sometimes have to read them the riot act--and make the.best decisions for their well being. My cousin and I had to move out aunt 2 hours into assisted living in her home town. Had she not been compliant, we would have taken her into Circuit Court. She ended up telling every person she came in contact with that her nephews kidnapped her and brought her to this awful place--her home town. Our aunt lasted 12 years--3 years in full nursing home care and was 99 3/4 years old. We were thankful she was fiscally independent and left a substantial estate that made retirement easy for us.

My mother had the perfect retirement with great friends, the lake life and a great CCRC for her last 2 years. She had 24/7/365 help watching after her and she had no idea she was down to her last $5,000 when she suddenly passed at age 91.

Go into circuit court, not been compliant, I guess she did feel like you kidnapped her. It's such a fine line as to telling someone how they should live their end days. We've lost all four parents and inlaws and for 3 of them this was a very real struggle. Even if it's "for their own good" when is it OK take over another person's life? Was she a danger to others? If they are only a danger to themselves and insist on living in their home, what do you do?

 

[ivinsfan]

I actually disagree with forcing people to move. My mom wasn’t as safe as she would have been in a home but much happier. Now if someone has bad dementia that’s different. We told my mom to keep her cell phone in her pocket at all times in case she fell. She didn’t and laid for 24 hours until her sister went into her apartment and found her. Went to hospice and died a week later. None of us lived in town but her sister lived across the hall and saw her daily. My sister lived a hour away and called daily. She fell in between the calls.

I'm with you TT, now a bigger issue is when they are still a couple and the aliments or needs of one very negatively impact the life of the caretaker spouse. that one is a little harder.

 

[robnplunder]

DW had dimentia and I was forced to move her into an assisted living place. I still felt really bad about it although the move was very successful - DW health improved, she liked the place, etc..

 

[ivinsfan]

DW had dimentia and I was forced to move her into an assisted living place. I still felt really bad about it although the move was very successful - DW health improved, she liked the place, etc..

Your spouse, so sorry you both went through that. I feel if you are part of couple in this situation it's hard for the caretaking spouse to make this decision. It must have difficult for a lot of reasons and you must be satisfied you DS is safe, well cared for and doing better,

 

[jIMOh]

Off-topic, but a broad brush statement there. My husband has been an engineer in Ohio, employed by the same company for over 32 years. They're always seeking engineers and sometimes have trouble filling job postings. Maybe it depends on the type of engineering?

Correct, engineering is a highly specialized field, so with my background, I need to be where they build cars. I can promote myself to project manager and move back to Ohio with a paycut, or stay in MI where automotive pays well above what engineers make elsewhere.

 

[hotwired]

Our daughter

Obviously I can't tell you what to do anymore than anyone else, but I will tell you this. My wife and I regularly remind our Daughter that we do not want her giving up her path in life to take care of us when we get older. Now we're a little different because we have some resources, but I have felt that twinge of guilt with my own mother and her impending old age, and I have absolutely no intention of being her caretaker or allowing her to live with us because of her personality. I will feel guilty about that probably for the rest of my life but that's my final answer so to speak.

 

[elisap]

It seems that in cultures that value caring for an elderly parent, it is expected that the parent go live with the caregiver. In the US, however, it seems like the aging parent often expects to age in their own home, maintaining their current lifestyle as best possible, and is unwilling to move/change to accommodate their caregiver. This often sets up an impossible situation.

Back in their day their parents / grandparents often had many kids and the wives were stay at home and they didn't move far. DH grandparents had 8 kids, all stayed within a 10 mi radius, then they each had 3-4-5 kids, at this point they started moving further but many didn't. Yes, we are expected to continue this tradition but without the means to do it.

Would I do it again, yes. I'll explain in my next post.

 

[elisap]

OP, ask yourself, if your parents died tomorrow would you wish you could go back in time to at least give caregiving a try? When my mom first became ill I felt all the feelings you feel and as if my life was over and in a sense it was for awhile. I did manage to go away once a year and when relaxing, I realized that one day I'll be able to travel as planned but then will wish I was back with mom. So I went all in, taking care of mom. This thinking helped me though. Just a warning though, it is emotionally draining to see your parents ill. We took care of her at her house for 3 years, then when it got too dangerous she suggested going into a nursing home (thank you mom, I was exhausted). Between my brothers and I she always had visitors. No one wants to feel like they are forgotten.

Well that time has come, mom passed 3 months ago, this is forever, I'm an orphan now and I miss both of my parents so much. Now I can travel as planned but I wish I was back in time with mom (of course I wish I could go back in time when both mom and dad were healthy). What ever you decide and when times get tough remember no one wants to be dependent on their kids or unhealthy). I hope this helps.

 

[isisdave]

How about going now, when it's relatively easy? Ask the other sibling to step up; who knows, he or she might have enough emotional stamina to do it , or might grow into it. Hire help if appropriate. You can contribute financially, of course. Skype relative and sibling often.

If relative gets worse and this no longer works, you can always return. You'll have had at least a little fun and independence. Remember, you or your spouse could get sick tomorrow -- so "go go go" while you still can can can.

Oh -- also -- if parent needs more care later, you can move him/her to your current community. Don't be shy about this. Parent has some claim to your attention later in life, but not to all of it.

 

[HI Bill]

...His will/trust states I have POA AFTER his Dr signs a letter stating dad is no longer competent.

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.

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.

My understanding is that in most states, doctors are reluctant/unwilling to sign a letter stating that someone is no longer mentally competent, and that the court may have to step in to do so. This is expensive, and time-consuming. I'd try to get the father to sign a current medical and financial POAs. Get all of his recurring bills put on bill pay. Take away his checks. I know none of this is easy...just finished Round 1 of 2 last year. No need to feel guilty for feeling resentful, IMHO.

 

[HI Bill]

I actually disagree with forcing people to move. My mom wasn’t as safe as she would have been in a home but much happier. Now if someone has bad dementia that’s different. We told my mom to keep her cell phone in her pocket at all times in case she fell. She didn’t and laid for 24 hours until her sister went into her apartment and found her. Went to hospice and died a week later. None of us lived in town but her sister lived across the hall and saw her daily. My sister lived a hour away and called daily. She fell in between the calls.

As a care facility administrator told me year before last: "There's no right time. It's either too early, or too late". In my mom's case, it was too late. She fell and broke her pelvis, then moved to the care facility after the hospital and 2 weeks in rehab, dying just 6 weeks later. If I had been able to convince her to move 4 months earlier, she'd probably still be alive and doing well. She did have advance dementia, and was increasingly weak and unsteady. All that said, she never wanted to leave her home. Was the path taken best for her?

 

[steveark]

The simple truth is few elderly people survive more than two years in nursing homes or more than four in assisted living. I gladly cared for mine, my brother was too far away. But there was no financial issue, my parents left both me and my brother seven figure inheritances. And it was an honor to care for them at the end as they cared for us in the beginning. It may well have been the best thing I ever did.

 

[NXR7]

I went through this with my father. 80's, a WW II vet and dementia. A couple of things I learned:

As noted, NO ONE is financially responsible for a parent's debts unless that person signed a contract, co-signed or something similar. DO NOT UNDER ANY CIRCUMSTANCES SIGN A DOC SAYING YOU ARE FINANCIALLY RESPONSIBLE. In Ohio requiring it is illegal and maybe also nationally but they still try to get you to sign voluntarily.

Signing to be the person's representative for assisted living or a nursing home is OK if you carefully read and understand the contracts. I actually never signed the nursing home agreements for my dad at all. Why? The paperwork said I was provided with and agreeing to certain documents that they did not provide and no one could ever provide. Every time they asked me to sign I asked for those docs. They finally stopped asking.

DO NOT USE YOUR OWN MONEY TO PAY THEIR BILLS NO MATTER HOW MUCH YOU WANT TO. Companies always build in a bad debt reserve so if you pay their bills with your money you're just making the companies richer. I used to work for a bank and saw countless cases where the kids paid out tens of thousands of dollars so mom and/or dad could keep their home. In the end it made no difference and the kids lost everything they paid out.

An eldercare attorney can be expensive. One friend paid $10,000 for assistance and for structuring everything properly. He told me it paid the family back many, many times over so it definitely was worth it and not "expensive".

In Ohio there is a program called a "Medicaid Waiver" which is a Medicaid program to keep people in assisted living and out of nursing homes. It worked for my dad until he contracted MRSA and could not go back to assisted living. The transition to full Medicaid and a nursing home took less than a day because that program had already set it up. Perhaps California has something similar.

Check with the social worker at local nursing homes and see if they offer consulting services or know of anyone who does. Turned out there were a couple of small companies that acted as placement services. We met with one, he gave us all of the options locally for assisted living and he got paid by the assisted living facility for the referral, not by us.

On an equally important note, how are you protecting your own family from this happening to you? Do you have a full durable power of attorney in place, perhaps with a clause saying it only goes into effect if you are determined to be incompetent? Have you considered moving your assets to a trust? Certain trusts (I think it's an irrevocable one but I have not done this yet) can protect you from the Medicaid "look back" period of five years.

If your assets are in the trust for a full five years then Medicaid deems you to have no assets that need to be used up to pay for your care and they will start paying immediately. If the trust has been in effect for three years, then the look back period is only two years etc. This can help you protect yourself and the things you want to leave to your family, otherwise it all needs to be spent on your care before you qualify for Medicaid. If your parents are still competent get them to consider it after you talk to an eldercare attorney.

When my mom was dying of cancer but still competent, all the way to the end in fact, I told her she had two choices: sign a durable power of attorney or I was not going to help her at all. I told her I was not going to be put through all of the stuff needlessly. About six months from the end she agreed and I neatly filed it away. When she was in hospice I pulled it out and used it to gain online access to her accounts. Several had no beneficiaries so I added the kids equally. Her will was so old it was about useless so we had an attorney draft a new one in hospice. She was never going to drive again so I transferred her car to myself to make it easier to sell. She already had a Transfer On Death deed for her condo. After she passed we never had to open the will and because of the car transfer, the condo deed and beneficiaries on all accounts we never had to go to probate court.

An elder care attorney is your best bet, not Internet forums. Everyone's circumstances are different to some degree.

Ray

 

[NXR7]

The simple truth is few elderly people survive more than two years in nursing homes or more than four in assisted living.

Each nursing home facility we talked to said the same thing. Every one told us that long term care insurance was a really bad move because people rarely live long enough to recoup the premiums. Perhaps that's why those policies are barely selling nowadays.

Ray

 

[Teacher Terry]

Bill, with advanced dementia she is better off dead. I think most people would prefer that.

 

[someday soon]

Mmmm...so many difficult choices and gut wrenching stories in this thread.
Thanks to OP CaliKid for raising some real life circumstances that are so so so tough to navigate. It's fun to kick around ideas about the best golf course on the west coast, or killer investment ideas... but this forum really shines when we write with honesty, lean on each other a bit, point out some new possibilities, and maybe find a little hope. Y'all are quite awesome if you hadn't noticed. I suspect I speak for lots of infrequent posters when I say it's great to be here.

 

[blueskyk]

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!?

My first husband was severely brain damaged in an accident after we had been married for 18 months. He was 23, I was 27. I cared for him at home for 8 years and then moved him to various shelter care and nursing homes where he lived for the next 24 years, which included 7 years on hospice. So, I was his caregiver and managed his care (weekly visits, doctor appts, various activities, etc.) for 34 years.

In the middle of all that, I got divorced and later met my current husband who accepted my commitment to care for my first husband. It wasn’t until my first husband died that we could move and retire.

Caregiving is a tough go - it’s really a hero’s journey that starts out with with the loss of whatever else you had planned.

“And the sun set, and all the journeying ways were darkened.” (The Odyssey)

In my situation, I also had to navigate my way through complicated grief for decades. Resentment is an indignant bitterness at being treated unfairly, a sense of entitlement that life owed you something you didn’t receive and I struggled with it as well. It took a long, long time but eventually I came to peace with all of it. No one ever wants to be the worst thing that happens to someone else.

It’s been 4 years since my first husband died and, looking back, caring for him was the formative experience of my life. It taught me everything I now know about sorrow and suffering and love, compassion and sacrifice, beauty and joy. Tragedy, well used, is a master teacher.

My greatest fear in life was that it all would be trivial and meaningless - that there wouldn’t be anything deeply noble or true or good I could count myself part of. That fear is gone.

If you choose to engage as a caregiver, you’re going to need a tribe of wise counsel to help you craft the balance you need - the caregiver’s life (and dreams and hopes) is just as important as
the one receiving care. I am forever grateful for all the help I received from therapists, social workers, attorneys, accountants, grief counselors, doctors, patient care workers, financial planners, chaplains, and all the incredible caregivers and their loved ones I met.

If you choose not to be a caregiver, you’ll need help as well to ensure any regrets are resolved. Otherwise, you won’t really be free.

Not a single day goes by that I am not grateful for the ease of my current life. I know everything can change in a moment. So, I keep my copy of The Odyssey at hand to remember the journey of life is perilous and well, non-trivial.

 

[footenote]

Wow - thank you, blueskyk. We get what we work to take from every situation and you have put in monumental effort to grow through your challenges. What an inspiring story.

 

[ivinsfan]

blueskyk….what a testament to you and the joys/sorrows of caregiving. If my math is right you are about 38 years into what was the formative experience of your life.


To those of you beginning the journey or in the thick of it, it's really hard to see the forest for the trees. When you wonder how you'll get through the day, it's hard to imagine what tomorrow, next month, next year might be like.

If I can echo one thing from Blue to would be to recognize that as a caretaker your well being is just as important as the well being of the one you care for. Know your limits, ask for help and most of all actually accept what are feeling and don't call any of those feelings wrong or selfish.

Another comment would be know the person you are caring for. If they have always been a little difficult or selfish don't expect them to suddenly become easy and grateful to you. It doesn't work that way. I wish it did for the sake of caregivers everywhere.

 

[Moemg]

blueskyk , What a powerful post ! You are a wonderful person .

 

[Mdlerth]

My jaw dropped so far it bonked my knee

Blueskyk, yours is a story of such courage and love it left me speechless with awe.

If ever a place in heaven came with an express entrance, it's the one you're destined for.

 

[Teacher Terry]

Blue, what a awesome person you are! I love that you went on with your life but kept your commitment to your first husband also.

 

[CaliKid]

Blue, what a awesome person you are! I love that you went on with your life but kept your commitment to your first husband also.

+1