Beyond E-R

[Rianne]

We are LTC self insured. My DM used less than 6 months of her LTC insurance. The family paid many years into it. In-laws, parents and grandparents never used LTC insurance and did not need to. According to Firecalc, our spending maximum covers decent long term care facilities, yet we can’t help but explore many different scenarios of situations we could face. Or maybe we could both get hit by a bus. If our assets continue to grow as they’ve been for the last 10 years (7.2% per year) we should be ok.

There are many threads about CCRC and costs in different states. I’m asking for experience or forward thinking advice about years beyond healthy living. Are family members involved or would you rely on outside facilities or helpers? We are pretty healthy now. To what extent would you call for help taking care of yourself on a daily basis? Our discussion ranged from paying close, trusted family members to check in on us or one of us. I’d prefer to stay in our home and family live in the same community we live.

We focus our entire lives looking forward to E-R, enjoying life, traveling, free from hovering bosses and customers. We’ve not spent much time thinking about the need for help. I guess we’re focused on being self reliant. My thoughts are $75K/per year per person. That’s only if it gets so serious we are completely unable to live on our own. If it gets to the point of a 24/7 nursing care situation, I’m offing myself.

 

[REWahoo]

If it gets to the point of a 24/7 nursing care situation, I’m offing myself.

This is frequently stated as the 'final solution' to declining health and increased need for care. Unfortunately, by the time you reach that point it is highly unlikely that you will have the resources and/or the mental capacity to act.

IOW, it's not a viable plan.

 

[Out of Steam]

There are many threads about CCRC and costs in different states. I’m asking for experience or forward thinking advice about years beyond healthy living. Are family members involved or would you rely on outside facilities or helpers? We are pretty healthy now. To what extent would you call for help taking care of yourself on a daily basis? Our discussion ranged from paying close, trusted family members to check in on us or one of us. I’d prefer to stay in our home and family live in the same community we live.

My belief is that the caregiver should call in some paid assistance soon enough to get a respite, maintain some social outlets, and not burn out. Men caring for disabled wives seem especially prone to getting sick and dying before their partner.

Like you, we're on a self-pay basis for long-term care. Policies paying 1/3 or more of the maximum benefit amount in premiums are very unattractive. Buying a longevity annuity starting payments at about age 80 comes to my mind these days.

 

[MichaelB]

This is frequently stated as the 'final solution' to declining health and increased need for care. Unfortunately, by the time you reach that point it is highly unlikely that you will have the resources and/or the mental capacity to act.

IOW, it's not a viable plan.

I think this is important and under appreciated. I would add, in addition to resources and mental capacity, one may not even have the opportunity, with people such as caregivers, family members and health care professionals always around and creating an environment that makes it too difficult to act independently.

 

[Aerides]

An acquaintance of mine recently became - unexpectedly - a full time caregiver to her elderly mother.

Her mom and dad saved well and were comfortable, but shunned the idea of assisted living in their planning. Dad died, and Mom quickly went downhill, requiring round-the-clock care (not major medical intervention, but help walking, bathing, daily tasks, and some loss of mental capacity.

The time to sit down and carefully discuss options was lost. My friend has help and brings in nurses for most of the day, but her entire life - at 54 - is now tethered to her mother's care.

I wouldn't wish that on anyone. Neither would she. She is now planning for assisted living when her time comes. She has lost so much. No taking a week's vacation - maybe a day here and there. No more managing her small business. She and her DH had to basically move into Mom's home (it was bigger than their condo). It's been 3 years so far.

Planning for nearby family to help out means planning to burden them. I think it's the responsibility of those of us with means to make sure you don't make one of your family members become an unexpected and involuntary full time caregiver, who gives up their life out of their love for you.

 

[aja8888]

Every situation is different. I see all kinds of situations with neighbors in my 55+ neighborhood of 437 single family homes as we have been here 7+ years. What I have seen:

Neighbor drop dead in the home (94 old lady, but living independently).

Neighbors selling their homes for funds to move into a nearby assisted living facility (Not a full fledged CCRC).

Neighbors selling their homes to move into senior apartments (thought is on my mind).

Neighbors hiring daily home health care for 2+ years (expensive).

Neighbors with part time home health care.

Most people who died here that I know of, lived at home with a caregiver spouse with family help until the passing of the ill person (like my DW recently).

My golf partner, who was healthy, had a stroke last year and hung on for 6 months in a assisted living facility.

I really have not met anyone in this neighborhood with LTC insurance but I am sure there are some. From what I can tell, aging folks want to stay at home, if all possible, until they have to move into skilled care. My DW was only in skilled care for 2 weeks before she passed and all costs were covered by Medicare.

 

[Rianne]

An acquaintance of mine recently became - unexpectedly - a full time caregiver to her elderly mother.

Her mom and dad saved well and were comfortable, but shunned the idea of assisted living in their planning. Dad died, and Mom quickly went downhill, requiring round-the-clock care (not major medical intervention, but help walking, bathing, daily tasks, and some loss of mental capacity.

The time to sit down and carefully discuss options was lost. My friend has help and brings in nurses for most of the day, but her entire life - at 54 - is now tethered to her mother's care.

I wouldn't wish that on anyone. Neither would she. She is now planning for assisted living when her time comes. She has lost so much. No taking a week's vacation - maybe a day here and there. No more managing her small business. She and her DH had to basically move into Mom's home (it was bigger than their condo). It's been 3 years so far.

Planning for nearby family to help out means planning to burden them. I think it's the responsibility of those of us with means to make sure you don't make one of your family members become an unexpected and involuntary full time caregiver, who gives up their life out of their love for you.

I cared for my mom for about 4 months with paid in home care 8-12 hours/day while DH/me worked. It was fine until it was not and she was in a 24/7 nursing home for less than 2 weeks. Honestly, a very nice well staffed nursing home but sent chills up my spine. I guess I’m trying to get feedback before it gets to that extreme. When there’s still some semblance of independence and a good mental facilities.

 

[Midpack]

From what I can tell, aging folks want to stay at home, if all possible, until they have to more into skilled care.

I am sure that's almost universally true. Losing ones independence late in life is one of life's cruel inevitabilities for many. My Mom finally started down the dementia path at 92, but she passed way about 6-9 months into it in her sleep at 93, well before she was too hard to care for at home. My Dad lived to 96, resenting his loss of independence was evident every day. With so little quality of life and without his life partner for 3 years, he took his own life via OD - not OK, but it was not a complete surprise, he was miserable. My sister lived with them for their last 4 years so they could stay at home.

 

[harllee]

My mom age 90 is in an independent living apartment at a CCRC and has loved it, she has been there about 10 years. Recently she has fallen twice and has some short term memory loss. We have hired caregivers from the CCRC to come in in the morning and evening and that seems to be working OK so my mom can stay in her apartment. She has some LTC insurance and we will start claiming it if and when she moves to a higher level of care. She has paid more in premiums for the LTC insurance than she will ever get back.

 

[aja8888]

I am sure that's almost universally true. Losing ones independence late in life is one of life's cruel inevitabilities for many. My Mom finally started down the dementia path at 92, but she passed way about 6-9 months into it in her sleep at 93, well before she was too hard to care for at home. My Dad lived to 96, resenting his loss of independence was evident every day. With so little quality of life and without his life partner for 3 years, he took his own life via OD - not OK, but it was not a complete surprise, he was miserable. My sister lived with them for their last 4 years so they could stay at home.

Quite common at those ages. Down the street from me is a 99 year old guy who still gets around pretty well and mentally seems mostly there. His bride of 70 years is about 90 and in and in and out of skilled care a few times per year. She is wheelchair bound. I'm not sure if they have paid home health care on a regular basis.

Their two daughters (retired and in their late 60's) are at the house frequently to help. One daughter and I were talking on a dog walk one day and I asked her how Dad and Mom were doing. She said they were "enjoying their golden years where most of the gold is gone now".

 

[TripleLindy]

I’m asking for experience or forward thinking advice about years beyond healthy living. Are family members involved or would you rely on outside facilities or helpers?

My mom and stepdad had good LTC insurance that they purchased before LTC insurance became crazy expensive or had limited coverage. They were in LTC for about 1.5 years and my stepdad was in Memory Care for about 6 months. Costs were around $8k/month, 100% covered by insurance. I’ve had the conversation with my financial advisor and our finances are such that we can afford to self-insure, should the situation arise, even if costs double. My parents were in a very nice place, but the care isn’t what you’d expect. The staff, while nice enough, were not nurses. I’d say their skills were more in line with hospitality or custodial services, so while it’s nice that there are people around, those people are not healthcare workers, IMO.

Like you, I do not want to be in that situation nor would I want to put my kids under that kind of burden. Even with LTC, there’s still quite a bit of assistance needed from the family to have any type of quality of life.

 

[latexman]

Many years ago in my 30's or 40's . . . GM had passed, and GF was living with Mom and Dad. One time I asked GF how he was doing, he said, "I'm just waiting to die". I never asked again.

 

[pacergal]

My siblings and myself cared for our Dad after Mom died. The first few years he was still independent, the last 2 he required more care, was in rehab facilities for 3 months twice. Each time we brought him home and all of us siblings took turns caring for him
He had kidney and heart failure and was getting more frail. The last ER visit, he was ready for hospice and told us so. We did hospice at home and he passed within 48 hours.
They had the finances for a CCRC/LTC , would have done well, but desired to stay in their current home.
We never bought LTC policy, we plan to self pay if necessary. DH abhors the thought of CCRC/apt living/care center,, so that is not a discussion he wants when I bring it up. I would be OK with asst. living apartment if/when needed.

Both of our kids have said they would support us moving with them and DH and I have looked at some Multi-Gen new homes built around here. That may be a consideration.

My sister and DBiL just purchased a newly built home with a Multi generation plan (two masters, living space up and down). Their daughter, SiL, grandson are moving in with them.
Both of the men have had/recovering from different types of cancer, so it will be a positive support system for all I think. And the new house is less than a couple blocks from their other child and his wife.

 

[Rianne]

It seems most people fight for independence. It’s to the point I’m exploring many memories of people/friends/family I knew who did everything they could to be self reliant. A disabled friend of my DB came to mind. His disability was dramatic but his attitude, positivity, and desire to be independent was quite amazing. He lived alone but belonged to a church. The members checked in on him, but he refused help that put anyone out. He accepted simple kind gestures but that was all. He did pass with that disability, I’m not sure what the disease was, I was young.

 

[aja8888]

It seems most people fight for independence.

That's it in a nutshell (most).

 

[Sojourner]

Planning for nearby family to help out means planning to burden them. I think it's the responsibility of those of us with means to make sure you don't make one of your family members become an unexpected and involuntary full time caregiver, who gives up their life out of their love for you.

+1

I am seeing this firsthand with my elderly DF who is now firmly in the grips of mid/late stage dementia. As much as we all love and care for him, my siblings and I (along with his domestic partner) are feeling the "burden" of 24/7 caretaking more and more each day. I cannot imagine creating a plan for my final years that involves imposing this kind of grievous responsibility on any of my family members.

 

[Midpack]

We are self insured for LTC, but I do reconsider at least once a year...

 

[anethum]

My parents chose to self-insure thanks to my dad's pension with partial survivor benefits. They wanted to remain in their home.

My dad's vascular dementia began at age 90. It was a gentle decline until he had a serious stroke at age 94. He began 24/7 skilled nursing care at home, dying 8 months later. My mom had continued to maintain the home with help from me. I live 10 minutes away. I had already been handling their finances, at their request.

I had wanted to convince my mom to move to a nearby well-run, upscale CCRC where a friend of hers lived. Alas, just a few months after dad died, my mom's dementia began. She would no longer have been accepted at the CCRC, even if she had been willing to move there.

The next 18 months were hellish for me, because my mom would experience "sundowning" every evening. While she was functional during the daytime, in the evening she would forget that her husband of 65 years had died. She phoned me as many as 5 times every single evening because she couldn't find my dad. I would sometimes get calls and texts from her next-door neighbor when she saw my mom wandering around in the dark looking for dad. In desperation, I taped my dad's obituary to mom's kitchen table. My mom said to me, "But what will he think when he sees it in the morning?". Sometimes you have to laugh.

After 18 months of that hell, I found my mom on the floor one morning. She had fallen and broken her pelvis and one wrist. After hospitalization and rehab, she was walking again, initially with a walker, then a cane, then didn't even need a cane. But she now had 24/7 caregivers at home. And that is still the situation 6+ years later. Mom is now 101. She has had 2 more falls. One broke a vertebrae in her neck. 2 years ago, she broke her hip.

She's wheelchair bound now. Hip fractures are usually the beginning of the end for the elderly, and she began home hospice care (in addition to her paid caregivers). 6 months later, she was discharged from hospice care because she had stabilized and had supposedly gained a little weight based on measuring her arm circumferance.

Beginning early last year, she stopped calling me by my name. Based on some other behaviors, I think she still knows me, but I'm not certain. She rarely speaks now and sleeps all night and part of the day.

I have been doing the following for the last 7 years: With her funds, I buy her food, household, and medical items. I cook her dinners and put it in her freezer. I pay her bills including the caregivers, utilities, insurance, home repairs, & property tax. I do her income taxes and handle her finances to pay all of her expenses.

My sibling & their spouse also live just 10 minutes from mom, but they refuse to do anything whatsoever. We no longer speak. My parents were both wonderful people. I sometime suspect my sibling was switched with another baby at the hospital.

I had to fire 3 caregivers for various reasons. (I discovered that one was planning a financial scam.) The 4 women there now are trustworthy, work together well, and treat my mom well. I try to treat them well. They have all been there for at least 4 years.

The caregiving expenses for my dad and for 6+ years for mom have already totaled over $1.1 million. That doesn't include the rest of the household expenses: food, utilities, insurance, repairs, & property tax. Her survivor pension & Social Security pay a bit over 25% of her expenses. The savings are dwindling but given mom's life expectancy, I don't think they will run out. However, if it appears the savings might go below a sum where a decent nursing home wouldn't accept her, I'd move her at that point.

 

[joesxm3]

I had planned to have DM in LTC and she went in (maybe too early) in December 2019 after an incident. At that point she was probably a rehab candidate, but he husband was not able to care for her. I was worried about not being able to get her into a decent place, so I got her approved for Medicaid and switched to LTC.

I went over there at least twice a day and felt guilty that she was there. I was working on a plan where I would take her to my house during the day and back to LTC at night. That was when covid hit. She was in lockdown all of March and quality of life drastically reduced during that time. In April covid ripped through her hallway and I barely got her out in time. Eleven residents died that week.

I have been single handedly taking care of her since then, coming up on 3 years. The comments about it taking over your life are spot on. I probably would have hunkered down due to covid anyway, so it is not that much of a social loss, but I do spend 6 to 8 hours a day caring for her, cooking, and waiting for her to finish eating, etc.

I know she is much happier here than in LTC and I bring her husband to stay here for a week a couple times a month. He is borderline not able to live alone as well.

So far I seem to be holding up, but I am aware of the comments about caregiver burnout. I am 66 and can imagine what doing this at 86 is like. The main danger is that at this point I am a single point of failure. I do have three nurse friends that are my emergency backup, but still dicey.

I am single with no kids, so I need to make some plan for my care.

 

[harllee]

I feel so sorry for those of you having to single handedly take care of an aging parent. You are having to pay an awful price for the decisions made by your parents. I am so grateful my mother moved to a nice CCRC at age 80 and now at 90 is doing well with help there. I am her POA and still spend quite a bit of time on her finances, I could not handle 24/7 caregiving. My husband and I are on a waiting list for a nice CCRC and hope to move there some time this year.

 

[badatmath]

I think this is important and under appreciated. I would add, in addition to resources and mental capacity, one may not even have the opportunity, with people such as caregivers, family members and health care professionals always around and creating an environment that makes it too difficult to act independently.

Tip: It is really hard to strangle yourself with a bed sheet when you are in hospital partially paralyzed after a major stroke. My friend's father tried this when we were kids.

 

[audreyh1]

+1

I am seeing this firsthand with my elderly DF who is now firmly in the grips of mid/late stage dementia. As much as we all love and care for him, my siblings and I (along with his domestic partner) are feeling the "burden" of 24/7 caretaking more and more each day. I cannot imagine creating a plan for my final years that involves imposing this kind of grievous responsibility on any of my family members.

Yeah that’s what it comes down to.

DF’s attitude was quite different. He knew he couldn’t stay out on the farm once he wasn’t comfortable driving anymore. Family had already discussed several options over the years so he made his choices. He absolutely did not want to be a care burden to family. I still had to manage his farm and finances, but that was a lot easier than managing taking care of him living in the old house. It just would not have been tenable as none of us lived near his small town.

 

[Rianne]

I can think of a couple of ways to make my exit relatively easy. Without being graphic, I offer the CIA spy method of a poison pill. I also saw this example on the recent Vikings Valhalla series. One of the characters knew she was dying a painful death and created a poison pill with plant materials she knew were fatal.

I didn’t mean to make this a focus of my post. I’m really trying to get suggestions or advice on making the older, older years easier.

 

[Octogirl]

Similar experience. My mom moved to a nice CCRC at age 80 and is now 94, with declining health. She has been in the AL unit for help with meals and showers for about a year. I am her health POA and brother is Financial POA. We are spending down her finances, and her accountant thinks her funds will last another 4 years (depending on the market).

DH and I are self insured for LTC but we know those funds could get spent down quickly (we have enough for about 2 years) and that the remaining spouse will need help.
I plan to see an attorney in the next 1-2 years to review trust options.

 

[Teacher Terry]

When I was 25 and my parents 59 we bought the house next door. We had 3 kids and all got along well. 6 months later my dad had a big stroke and my mom cared for him with my help. When my youngest went to school I started college and my mom helped. We had many good years living close. 14 years later we had to move for our careers. My dad had just died. My 2 siblings never helped.

The last 10 years of my mom’s life she had 4 bouts of cancer. I would always fly back to help using my vacation and sick leave. My 2 older siblings that lived much closer also helped. The last 2 years she battled cancer and my siblings were retired. Occasionally my mom needed someone to stay with her for 2-4 weeks. Being retired my siblings did more than me. I didn’t feel guilty as I still went to help and if I had been local I have no doubt that they would have let the responsibility fall on me just like with my dad. I am happy that I could help both my parents.

My younger son said since he can work from anywhere if I needed help he would move in with me. I told him if I had dementia to sell the condo and put me in a home. Most of the people in my family stayed independent except for short periods of time. Hoping I am in that situation.