Parents Caring for Parents Support Thread (Part 2)

I think that is an awful lot of it – for a lot of 70-somethings, moving into under 85, there’s nothing spectacularly wrong so you feel like you have a little more time. And then Something Happens and there’s no time for getting things in order to relocate or downsize. Or you lose daily living skills slowly, so slowly you don’t think it matters.

The part that makes me scream is the “we’ve decided” part. ■■■ is that? You don’t “decide” anything – you have a stroke, you have a fall, you are dx with something awful, you are less and less capable of good decisions, you can’t remember if you ate lunch today or yesterday…you can’t do stairs, you can’t take a shower, you tell yourself it doesn’t matter. None of us “decide” anything. We take what the world gives us and we are either prepared or not.

And there’s this notion that it is some sort of character flaw if you don’t stay in your original home till the bitter end, I cannot even. What a terrible thing to do to our children.

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This may sound a bit harsh but to me I see it sort of as “making decisions based on living “ and “making decisions based on dying”. A frame of mind of sorts.

Ideally people land somewhere in the middle. Making plans for both without leaning too far one way or another assuming that current conditions don’t lean one way or another.

And families/relationships differ. Some people really focus on the “stuff” - clearing out homes so their kids won’t have to. Some people focus on affairs - making kids aware of all their personal affairs - and some NOT wanting to share personal affairs at all.

I admit that I have a spouse who doesn’t think about making things easier for our kids. Doesnt think about our life or health changing at any time. I am more the motivator to get things done. But our household does NOT have plans and placards in place to the degree that many CC’ers do - and we do not have the desire to make solid decisions on some of the aging aspects.

We will not make things complicated for our kids - but I also think - to a degree - that going through the stages of closing an estate is part of the “letting go/grieving” process.

I think your neighbors are leaning more towards “making decisions to live” - maybe more than they should.

These are choices and I think we have to respect either side of the spectrum.

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My brother and I went through this with our dad and his (third) wife this past June. They felt “young” right up until they had concurrent health events that put them in the hospital simultaneously and were then released home without the ability to care for each other. The wife SOS’d me and my brother to help them because they would “die here if we can’t get help soon.” We flew out and got them into AL while they were repeatedly saying, “How could this happen to us?” and “How did we get so old so fast?” When I asked them what their plans were for such a time as this, my dad said, “We didn’t think this could happen.” I replied, “Why not? Because the laws of aging cease to exist under your roof? Wishful thinking is not a plan, so here we are.”

My dad recovered, the wife is still in decline, and they moved themselves back into their house in November against all advice. My brother and I were clear with them that because neither of them is mentally impaired, they are free to make their own decisions, but moving back to the house is a suicide move. They are simply waiting for the next “event” to cause another crisis which they will need to manage themselves whatever that looks like. They are fine with this because they never want to go back to “one of those places” (a resort that was basically a land yacht with every amenity imaginable) and prefer to die at home whenever/however that happens. Case closed.

Unlike many of you, neither my brother nor I give their situation another thought because this is what they want. They are both 90, my dad is still driving, and how they manage is up to them. It is likely she will die first (she has multiple co-morbidities and is under palliative care but will not accept hospice), and my dad can decide what he wants to do then. All of their paperwork is in order, and my brother and I (co-executors) have access to it and will handle the disposition of the house when the time comes. We don’t care if they do the Swedish Death Cleaning or leave it to us. I understand and sympathize with those of you who have a parent(s) with cognitive disabilities, but my dad is not impaired, so I have no authority or responsibility to intervene in how he wants to live or die.

DH and I will move ourselves into a CCRC-type living arrangement before our check-engine lights come on, but we have made it clear to our son that he has no responsibility for his aging parents as we will be leaving just as he is getting into his prime and does not need to be encumbered with anything to do with our care. Our paperwork is all in order, he inherits everything, and there is enough money to shield him from our decline.

@abasket said it better than I did.

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Also noting that @deb922 neighbors are 79 and 81 - maybe they should be thinking differently than a household of 66 year olds?

Dunno. :thinking:

Even as a “making more decisions to live” person, I think in 10 years I may think differently.

Which may be why @deb922 led off with their ages!

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Our neighbors are in their 70s. The H recently retired from his job as a professor at the state university but has done some consulting research. They recently traded in their nearly new Lexus hybrid for a brand new one. They also recently both were treated for respective cancers and also got very ill (including temporarily losing their hearing from infections) while on an international trip. They abruptly decided instead of aging in place that they’re selling their home & buying a co-op in nyc so they can live near their D and watch their grandson grow up (he’s a toddler). Their other grandkids (from other D) are starting college and live in CA.

They’ve been wrestling with what to do about aging for some time and were on waiting list for the CCRC where my folks lived the last years of their lives but then decided they didn’t want that & got their deposit back. We will miss them—they’ve been good neighbors & we’ve gotten to know them better in the last few years.

They’re going to have an open house of their place in late April. I hope the new neighbors are good.

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What my inlaws want is not realistic, so we are not able to join you in the “not give it another thought” club. What my father wanted turned all of our lives upside down and terrified my mother during the last year of his life. We were helpless to stop him and he would not be dissuaded. But he (mostly) got what he wanted.

My DiL’s mother aged in place alright – she died, alone, in the house, and was not discovered until a doctor sent the state police to do a wellness check. The chaos and financial problems were many. Even with a will. But it was what she wanted.

Everyone’s situation is going to be different, but the unifying thread is aging people either are thinking about themselves, or they are thinking about the people they leave behind. People have lots of plans for death, and plans for life, but we all need a plan for the time BEFORE we die, which is different than the entire rest of our lives.

My inlaws believe that my BIL and DH will just hire someone to clean out their house and 6 acres of sheds, garden equipment, tractors (this is a residential property, not a farm) in their spare time. Both BiL and DH are working full time. They believe that they will always drive effortlessly. (FIL often remarks how other cars drive too fast. MIL gets lost everywhere. They won’t buy a new car because they can’t process the dash. But they “are fine to drive”) It’s fine to say “well that’s their choice” and it is…but when FIL has a heart attack and she calls DH to say she needs a ride to the hospital, or has gotten lost trying to do it herself, what is to be done? When one of them falls and then has mobility issues in a contemporary home with zero access without multiple stairs, what then? BIL/DH have literally begged them to move and they just laugh it off.

Sorry, this is a hotbutton issue in our house. We see the disaster coming and wince. Bless my momma for deciding herself that she needed more help on the daily than was reasonable to think Local could provide, and just picked an AL place. She did that for us.

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Amen!

I think most of you know that I was widowed last May. H and I were fairly organized and it still has been a lot of work for me. A lot. I am thankful that we had a good estate plan in place, left me a password list , etc. It’s very, very hard to deal with this stuff when you are grieving.

I am thinking of my kids. They have busy lives and I want them to have as few issues/problems as possible when I die. I know I have mentioned on CC that I have written up as many instructions, lists, etc as possible and those are on my laptop with copies in my home safe and in D’s home safe. I want them to have space to mourn as well as live their own lives.

One of the greatest gifts my mom gave us was being willing to move to AL after my dad died. She knew that her dementia was getting worse and it was not good for her to live at home anymore.

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I did put my friend’s age as she is in the middle between myself and the parents who’s care we have been through in the past couple of years.

My friend also said that they were on a journey to decide their next steps. The next steps are basically to do nothing different. I wonder if my friend will decide after her husband is gone (he has some health issues and is increasingly not very mobile) that she might decide to move somewhere

I’m afraid though as a person who is quite subservient to her husband, that this ladybird deed has the effect of making a decision for her, it felt that way to me as she was describing it. Her husband wants to leave the house to his children. I know that she can change her mind, but will she think that she is fulfilling her obligations by staying and giving the house according to what her husband wants.

But I also wonder is if I’m going to change as I get older. It’s great to say in my 60’s that I will make that decision to put my children’s lives ahead of mine. And move to that luxury complex as I age. It’s like a nice resort, my husband and I are so impressed with how nice these new independent living places are.

That’s why I asked about motivation.

Or I wonder, has my generation changed how they approach aging? From one who thinks about how it affects me to ones who think about how it impacts my children.

The same as holidays and the expectation that children went to their parents on holidays and vacations.

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I can only speak for myself in that my personal plans for aging have been greatly shaped by what I experienced with my own parents. I had one parent die after a 10+ year battle with Alzheimer’s and one who died peacefully in his sleep at home three months later. Thankfully they had their wills and estate plans but there were still a lot of loose ends after my dad died because it was so unexpected. (It was 48 hours before I called the police to do a well check because he never returned calls so we weren’t worried at first.)

If I had a crystal ball and knew that I would die in my sleep with all my faculties I would certainly be making plans to age in place. We had a house keeper for my dad who would come weekly, clean, do laundry, and run errands/help with groceries. Plus he had a much younger sibling who lived nearby and came to visit every single week and stayed 2-3 days at a time. He had downsized to their snow bird condo, all on one level, very convenient to what he needed, and in a community with free transportation for seniors to MD appointments. It worked.

But, I saw first hand the degenerative nature and the cognitive decline of my mother, starting when she was in her mid 60s. There was so much resistance to having help and the decision to move her to a memory care unit two years before she died came much too late. It was incredibly awful for me trying to juggle caring for my own family (my D was only 8 when my mom started having symptoms) and all the demands of my parents (who lived 5 miles away). I ended up in therapy for quite some time trying to set a semblance boundaries. In the last 3 years before the move to memory care there were frequent hospitalizations, middle of the night emergencies, wanderings where we were close to having to call police for silver alerts, plus all the day to day help with ADLs. It took a huge toll on me mentally and physically, and put a strain on my marriage. I NEVER EVER EVER want to put my daughter in that position.

As such, we always have our financial and estate plans updated (D has copies and knows where everything is in the house), we will downsize after H retires in 10 yrs or so (we are only in our mid 50s so younger than most participating in this thread), and then if either of us starts to have any signs of cognitive or physical decline, we will move to a CCRC somewhere near our D so it’s easy for her to visit but not be responsible for any of the day to day. We’ve already told her that if we ever balk at that, she knows that we are cognitively compromised and she should be guilt free in moving us to somewhere appropriate for our needs.

I guess it’s possible that I could change as I get older but I doubt it and we’ve been communicating this plan for years.

We have one parent left between H and I who is now in his mid 80s and in great health mentally and physically. He and his wife are looking at CCRCs now and we are grateful that we aren’t needing to push or plead.

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We have already set these boundaries, no begging. My brother and I have been clear with my dad and his wife that we already did the work of flying out to the rescue and moving them into AL. When they decided to move back home, we were clear that we wouldn’t do this work again. THEY have chosen to be on their own, and this means they are choosing to die in the house unassisted, and it will not be pretty. When they need help (and we were clear this would all happen again), they would need to call 911 and make their own decisions from there; we wouldn’t step in again. My brother lives in another state, and DH and I are 80 miles away when we’re in AZ, otherwise, we’re in Maine. In no case can we help with any day-to-day, and they understand that.

But there are a couple of differences here. Once we all sat down and had this very blunt conversation, the boundaries were set, no one was confused, and it freed us to “not give it another thought.” This doesn’t mean I don’t talk to my dad or go out to visit every few weeks, take them to lunch, etc. But it does mean that I am not the one they will be calling when the next emergency occurs. The second is that I am generally a hardass and refuse to be a victim of what I determine is their nonsense or what I cannot control, so it’s easy for me to not give their situation another thought.

ETA: Similar situation with DH’s parents, both in their 90’s, MIL with dementia. After a month, they fired the in-home care the sibs set up for them. FIL cannot care for MIL, but he thinks he can and has POA, so DH’s family has had the same conversation with them – they are on their own.

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I just hope that when I need some real help my kids or someone else will actually help and give me the benefit of the doubt. That not everyone will cross me out as that “crotchety old lady” or “I told you so years ago” or "what were you thinking " (even if it was magical thinking).

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My mother in law was promised by her local child that she would never have to live anywhere but her house. Frankly, it was not a promise that should have been made. Yes, she is in her home…all the time…because there is absolutely nothing she can do for herself, and to go out is a big to do. Local sibling has her over for dinner every other week or so. It was every week, but became increasingly more challenging.

The rest of the siblings help out when they can, but no one else lives local. And most of the outlaws (spouses) think this woman is not safe in this house even with 24/7 caregivers. It’s just not the best plan.

She will be 94, and the doctor says her heart is strong. I say…that’s not good news because nothing else is working well.

But…she will stay in the house…because that’s what local sibling promised.

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A home can become unsafe pretty quickly, especially if it’s not designed for aging in place. People should not make promises that may become difficult to keep. I’m sorry for those grappling with on this. It’s very tough.

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So is she happy with that decision? It may not look ideal to outsiders for a thousand reasons but how does SHE feel about it?

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Are you asking about how local sibling feels? If so…she is overwhelmed. She wants the rest of the siblings to come and help…but no one else lives nearby. We did convince local sibling that with 24/7 caregivers, local sibling did not need to do the laundry, cleaning or grocery shopping. Finally. But her claim is that this is what her mother wants to do so…that’s that. Let’s just say, the rest of the siblings help out when or if they can.

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Understood. That seems like a good resolution for all of you.

My Dad had a folder with all information we needed but hadn’t anticipated his mental decline – clearly unwell to us, just a little “off” to the rest of the world. My mom just handed everything over to us and continues to think (too much) about her impact. There has to be a happy medium :slight_smile:

We could never have a conversation as you describe with my inlaws. Lord knows everyone has tried. We tried laid back, we tried direct, we tried ignoring it all. They simply will not tolerate any discussion of “what would you want to have happen if , say, one of you got sick?” But I guarantee that despite that, when one of them gets sick, they will call BIL or DH up and want help. Even if they previously swore they would never need it. When we are there, we offer to help – move a rolled up carpet blocking the outside stairs, for example, where they left it for the winter “because we’ll get to it later”. Won’t hear of moving it “you just think we can’t”. We are further away geographically, but BIL is 90 minutes away so for the past 4-5 yrs they have less and less contact with DH and BIL is enabling. DH has had a good relationship with his parents his whole life, but this is shredding that little by little. When his parents die, he will have a significant amount of anger, and I know that’s not what they actually want – but they can’t or won’t change.

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It turned out about the best way it could for my parents (who died at age 64/dad in 1995, and at age 77/mom in 2010) and DH’s parents (who died at age 92/dad in 2020 and at age 92/mom in 2021). ‘Best way’ ended up being manageable. Dad died in hospital after having phlebitis in one leg (but aggressive cancer which the one chemo available did nothing to stop it), admitted Friday and died in the hospital the following Friday of the cancer that took over his chest (in-patient hospice bed/room at the hospital on Wednesday and family only with visitors). My dad, who normally is not one to talk but a minute on the phone, was on the phone with me for an hour Friday evening after hospital admission in a very upbeat and happy mood/physically comfortable - just the most wonderful gift for me. He died 2 days before Father’s Day which also would have been his 64th birthday; my DH, My 1 YO DD and I last saw him Mother’s Day weekend, and as we left the house I looked back and in my mind I thought this was the last time I am going to see my dad, and it was. We were flying up for Father’s Day, and not knowing to rush and move up our flight plan did keep our initial flight for Saturday - we were called the evening before our flight about his death – we then extended our tickets for return as we remained through his funeral the following Friday. It was manageable for my mother to remain in her home (had live in cook/housekeeper once it was needed). Once she had exhibited a big physical decline - I informed my brother to check into local hospice – evaluation was going into the hospital via ER and getting evaluated by 3 MDs; they determined she was hospice ready but also had a gall bladder infection so she was on IV antibiotics in the hospital from Mon - Thurs; went home to a hospital bed Thursday and died on the following Monday; local brother and sister who traveled four hours by car at bedside.

I see ‘estate sales’ around my area and know there are a number of companies that do a very good job of it. For my parents - my brother hired a good family run estate group to run the estate sale. I know that estate family group business thought it was dumb that I had to purchase so much stuff through the sale instead of buying prior, but I was not local and I was physically weak – I had my last IV treatment for cancer a few months before the estate sale but was on oral medication for 10 years (with side effects that I managed because the side effects was a better option than the risk of cancer recurring – some women call that medication ‘oral chemo’ due to the side effects). I told my older brother by phone (who lives in Anchorage) as soon as I returned from Mother’s Day that if he wanted to see dad alive, he needed to get home ASAP. He was going to travel - notified about dad’s decline and showed up at the airport a day earlier for flight changes. Mom and dad had trustee documents that mom wouldn’t sign because she didn’t want to ‘lose control’ - but she would listen to older brother. As soon as he got to dad’s bedside Tues/Wed, learned that trust was not signed off - he got mom to agree to sign the papers, and he got the lawyers going - very forcefully about the imminent death, lawyer came to hospital bedside the day before dad died, Thursday (my brother was very urgent with the lawyers as well) - they had dad sign the most important papers first. Dad was so weak at that point. The hospital chaplain, a good family friend, said my dad’s decline in one day was like a typical cancer patient one-month decline. My mom signed everything. We would have had a mess w/o the trust in place.

DH made an independent decision to retire at age 64 1/2 because his non-engineer plant manager boss was unduly stressing DH at work and DH saw we could afford to retire a year before we had planned (which was when I turned 65 eleven months later) based on our retirement assets. A month later, his father ended up in the hospital with Covid - and we think he could have survived and had been able to continue at his skilled care facility if treated for Covid. MD talked him into ‘comfort care’ which we don’t think he had full understanding of what that actually entailed - so no further treatment including fluids stopped. I chalk that up to him not feeling well, being depressed with limited contact at skilled care, his arrogance or pride to make a serious decision w/o a family member present (it was certainly presented very lightly, and on the surface ‘comfort care’ sounds like it will be comfortable - Uh, not). Local BIL was having cataract surgery that morning so not at the hospital room when the MD Hospitalist presented a ‘choice’, and I don’t even know if BIL knew about his dad transfer to the hospital until after FIL’s fateful decision was made. DH packed quickly and drove straight there, 850 miles - and he was bedside in the hospital room with his dad while at the hospital. DH fully garbed for Covid and could not leave the room. DD1 was able to get a priest at bedside for last rites (the hospital was very reluctant about allowing the priest in – DD1 as a VA hospital nurse was able to use finesse on the phone). Days later FIL was transferred to skilled care, unresponsive but living. This occurred/concluded about 10 days before Christmas, which included FIL’s death.

MIL had continued to live at home but was on mental and physical decline. During FIL’s crisis/death, MIL’s caregiver (lady in her 70’s but very active - would come in to do light housekeeping, grocery, companionship, personal care, often coming but not every day as MIL really needed) had a stroke - and while recovering at home had another stroke and died. Niece took MIL over the Christmas/New Year’s to her OOS home, and her dad (DH’s brother) returned with his mother to her home. During the break at niece’s home, MIL actually also was hospitalized for Covid - and MIL thought it was a UTI because she didn’t feel any worse than a UTI. Niece’s husband and two children lived in MIL’s home with her during Jan - May, as niece had military deployment out of the country - niece’s mother and father in close proximity to her grandmother’s home. Grandma was 2nd mother to this niece. DH spent a lot of time there as live-in caregiver for his mom who had physically declined to being long past needing to go to skilled care. She would have a UTI and get hospitalized - DH found her on the floor at the side of her bed after hearing the ‘thump’ (DH couldn’t lift her - but EMTs could) - DH was sent home to have ‘respite’ before returning. All the brothers agreed that their mom needed to move to skilled care, and she got the same room her DH had. (DH’s mother’s solution was for DH to continue to be her 24/7 caregiver….) The caregivers in skilled care/nursing home were very caring, attentive to dietary choices (the soft foods she liked and was able to eat w/o teeth/dentures) and she settled in nicely. But a week later, her medications stopped working for her hypertensive heart disease, and her body was shutting down - so DH went up to be at bedside for the last time. His brother that lives 5 hours away spent another day at her bedside when she was not responsive. Other brother OOS didn’t make arrangements quick enough and she died the night before his arrival - but this brother had seen her a few months before. He and his wife didn’t believe me to not delay coming (his brother was a store manager and should have trusted his people - he had good assistant managers….). DH’s dad has longevity in his family, but the circumstances were what they were. Mom’s sisters had all had some kind of heart issues, but most lived into their 90’s - and her parents lived into their 80’s too. The small-town home of DH’s parents is still in the family, owned by the niece, DH, and DH’s one brother (the other two brothers have sold their share) - it is nice to have the gathering place.

We will see how things go for SIL’s parents and for us. We intend to move near DD1/SIL/grandkids, but it may be a year or two – first thing is for SIL’s work transition out of military and into a job that is a good career situation for him in that city. We know what it takes to get our home ready, and all the stuff to get rid of.

SIL’s parents will be moving into AL near his brother’s place - and in some ways they have been dragging their feet. The dad has Parkinson’s and they are at the tail end of his abilities w/o being in AL. But their stuff has been downsized thanks to the trips SIL/DD1 made (DD1 doing a lot of coordination by phone for two of the three trips) - they had 2 storage units and one they had not even visited in 7 - 10 years. Storage stuff is gone. Garage is decluttered. They know what they can take to AL and know what they will take. SIL’s brother/family will be the involved ones when they are at AL - DD1/SIL live 6 hours away from there. IDK if they will get the house sold before or after move to AL, but they have to accept the AL spot when it does come - they have no other plan. DD1 is on the email list for the AL contact regarding a spot. They passed up a spot already. It makes DD1 nervous, but fate may have uncharted waters, and it is not in DD1/SIL’s hands.

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My mom has had a couple pretty bad days, mentally. I don’t even know how to explain succinctly. Peak panic was reached yesterday afternoon, when I called her and she was telling me, sobbing, hyperventilating, that a whole bunch of people came to her room and asked her questions because she killed a bunch of people overnight and where is Local and she missed her appointment and that’s because Local must be dead and nobody has told her and we are ALL dead and nobody told her.

I told her no, this is a nightmare she had and Local will be there in about 45 minutes, and just stayed on the phone with her until they got there. The dr did do xrays and added a month of prednisone to her meds. He doesn’t want to add more or different pain meds because she will basically sleep 24/7. Not super helpful, but otoh there’s always a point at which there’s nothing left to do. I am thinking a lot about Atul Gatawande’s book Being Mortal these days.

Local is pragmatic but says he always is worried someone will suggest she needs specialized dementia AL (we’d have to move her, which will precipitate a hard conversation) . Preferred is in denial, believes all this is just from the tramadol and she’s not so bad. I don’t know if it matters either way what the cause is, although I’d like us to agree that it’s dementia. We did agree that telling her about appointments is not something we will continue to do.

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That sounds so scary for everyone involved. (((hugs)))

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Yikes. Sorry you face those challenges. Any chance that UTI is making demention symptoms worse? (My father’s nightmares when hospitalized for UTI / bp issues this winter were ever so crazy!)

Atul Gatawande’s book Being Mortal - I often have thought about that book for my mother (now gone), father, BIL (now gone) and myself (for future planning). Posting link to the description for those who might have interest. Being Mortal | Atul Gawande

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