Exasperated and frustrated is totally OK! And frankly so is a little angry. Sending big hugs!
The crummy thing is that we are left to pick up the pieces.
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There are a lot of variables in everybody’s future. I think it’s ok to not have an exact plan plotted out as long as there is an awareness about need for flexibility / responsiveness down the road. And yea, a bathrooom/shower on the main floor of the house is helpful. (We have one, but the shower is dinky).
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Our showers are both dinky and our house is only 1250 square feet, but it works for us at this time. The entire house is one story with a step up from street to the house. I think it will not be that difficult to hire help. I guess we will find out when we find out. I don’t want us to be a burden on our kids.
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This is the best summation of the problem I have read yet. 100%
It’s our experience that an additional problem with the “we have only the basics of a plan” is that by the time we need the plan, we are unable to execute it. Maybe it’s finances, maybe it’s health, maybe it’s cognitive decline.
My FIL asked if DH & I were to downsize, what would we be giving up? And I looked him in the eye and said I can read a book anywhere, but after all we went through with [various other elders] I don’t want my kids to be angry at me when we die for leaving them a mess to cope with. That is what I GAIN in having a plan. It’s no longer about me, it’s about them. I could see him struggle with the concept.
FIL is now shopping for another oncologist, bc he doesn’t like the one he has had for the past 8 years. Why? His chemo was painful, and he doesn’t think it should be so he wants a new doctor. I can’t even.
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My MIL turned 99 Sunday. She announced her intention of having a big party for her 100th. She will likely live at least that long. Her broken pelvis last summer seems to have sparked a change in her. She is off all meds other than Tylenol, and she told us yesterday that for the first time in years, her back doesn’t hurt. She still has lots of issues, but she is better than she has been in several years. Again, she’s not in “good” health, but it’s all relative.
The problem is that she is in an AL facility that doesn’t provide what she needs (mainly due to staffing issues). I spent the afternoon yesterday scrubbing disgustingness from bathroom surfaces. BIL, who (like me) is the in-law, sees no reason to move her … and he won’t make demands because people are getting kicked out with 30 days notice when they complain (or so he says). He says she has not had UTIs recently, so her care is adequate in his eyes. SIL just does what her H wants, and she says that the facility is “convenient” for them. She had aides, but they quit. BIL keeps talking about hiring more, but he doesn’t do anything about that.
H is not local, so while he has voiced concerns, he can’t really do much more than that. His mom isn’t in danger, so he has to accept that the local is doing her best. It’s tough.
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I think about this thread often. Much of it is pertinent to my current life. We’ve just come from a 2 week crisis with my parents, 84 and 83. They live in a large, rural, stuffed house with 3 acres. They have/had no aging plans other than “die in this house”. They refused installation of shower grab bars “because they don’t need them”.
We went last week to sign POAs at the law office. My dad took it to review. My mom didn’t even do that….she doesn’t want anyone to have the power “to control” her. That sums up her life motto well.
They have the funds to hire help. They need it for yard work, cooking, etc. My mom refuses to allow hiring of any of this.
I’m stepping back, as all other offers are rebuffed. I guess we’ll just go from crisis to crisis. I’ve told them for years this limits options, but it’s fallen on deaf ears.
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My dad had his surgery yesterday. It was successful (they got the entire mass removed, the surgeon said it presented as a “typical meningioma” and Dad was stable throughout).
He was “feisty” (their words) when they brought him out of sedation, hurt a nurse and ripped his IV out. They sedated him again, put him in soft restraints and after an hour, slowly reduced the amount of sedation so they could do a cognitive eval. They seemed satisfied with how he did (followed commands, squeezed fingers, wiggled toes, was able to state his name, date of birth, what year it was…knew he was in the hospital, but not the name of it (but he knew the city it was in). He remained sedated the rest of the time I was there (seemed asleep), but when I went to leave I told him I was leaving he asked “did it go well?”, (meaning the surgery), which I took as a good sign that he knows what is going on.
The update from the ICU staff this morning was that he was stable all night, had been awake for a bit this morning, was still agitated, but not overly so and they were able to remove the restraints.
Sitting waiting with my mom for so many hours gave us ample time to talk about things. I expressed the thoughts that I wrote about in my last post. The fact is, my mom is not the problem, my dad is. My mom is all for adding a shower to the 1st floor bathroom, but he won’t have it. He is very controlling and stubborn, always has been and there has always been a terrible power imbalance in their relationship. That’s not likely to change, so I guess we just muster on with the situation that we’re in, until something forces a change. She told me if she outlives him, she has no problem selling the house and moving to a one-story living situation.
Anyway, that’s the update. Thanks for listening/reading 
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That’s a tough situation.
Bit of a brainstorm - Could you add a bidet toilet seat in downstairs bathroom? Not as good as a shower, but perhaps helpful for keeping cleaner midbody parts. (If they want heated water, would require outlet or when in use an extension cord.)
I’m so glad this went as well as could be hoped for. I think that the elderly, like children, tend to react to anesthesia more strongly thanother demographics. it’s good he knew the basics of the situation.
What a plus to speak with your mom. I hope you find solace in knowing you are doing everything you can to help, when they will let you. It’s so hard.
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that’s an interesting thought, and something I’ll keep in mind. I imagine that is something that could be put in place quickly in an as-needed situation, rather than battling with him to do it proactively. thank you!
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I am currently visiting my mother in memory care. One of the other residents told me he would see his mother this Sunday, and asked me to guess her age: 102! And this was verified by the aide sitting behind him. What a situation!
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I play mahjong at the senior center on Monday
The person who runs the senior center tripped at work and broker her hip. She brings her mom who’s in her 90’s to the center every day.
You wonder, who takes care of your parent when you are taking care of them and have an injury. Or a disability of your own.
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There was a mother/daughter duo who shared a room at my in laws’ assisted living facility. The mom was 100 when her D passed away rather suddenly. Thank goodness the mom was already happily settled in the AL facility.
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At least 50% of the time family caregivers predecease the people they are caring for. It’s exhausting!
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There is a chain of Assisted Living facilities that has where the spouse lives for no extra charge in the shared space. To me, it is a good selling point. I imagine they had a similar arrangement.
Yes, it is good that the mother was happily settled.
When I worked for skilled care/rehab, we had a lady that was 100 - and she easily could have lived with a relative IMHO - she was very easy to care for, and few medical conditions relative to her age.
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Can you discuss with the social worker/discharge team or the MD in charge of his care regarding the home situation for his care along with your aging mother situation? You can make inquiries with the nursing staff.
I would document what his behaviors have been post-surgery (as you described for us), how the discussion went with your mom. The power imbalance. What could help coming from MD/discharge staff/social worker on conditions needed at home for discharge to home? What they may be willing and able to do to help have the home situation be better and not the battlefront with your mom and you w/o a say until a further disaster happens. It could be as little as a free home review by some senior agency in your area that assesses that a downstairs shower is needed (for example, and any other recommendations). IDK if your mom would like to have a program like Meals on Wheels deliver some meals (if that is available in your community).
My MIL did sign up for Meals on Wheels, and the nice lady that brought her meals actually was a senior that was being paid by the agency (which she needed to help supplement her SS and savings). By this time MIL had reluctantly stopped driving. MIL worked up a ‘deal’ with this lady Jeanne to be paid directly by MIL to be her caretaker who did shopping, light housekeeping, personal care (helping MIL with her shower) - so Jeanne quit the agency (with notice) and worked for MIL. This worked out great initially (although MIL needed someone coming in daily during MIL’s decline over time, MIL was stubborn and only wanted Jeanne - but it worked out well enough) until Jeanne had a stroke, and when Jeanne was home from the hospital had another stroke and died. Recently retired DH filled in the gap with his mom (staying there extended periods of time as our home is 850 miles away), tag-team a little with his brother and niece, until the family shared with MIL the inevitable for MIL to go to skilled care. By that time, his mom needed FT care 24/7. DH kept her bed clean/dry (got her to the bathroom and took care of all her personal needs) - he slept on the couch in the next room with the doors open from the downstairs addition BR, 3/4 bath with large walk-in shower. MIL either rolled or fell out of bed trying to get up by herself (it turns out she had a UTI) and DH couldn’t get her up off the floor, the EMTs came and the one worker had been to the house before - MIL was hospital admit. DH came home for respite until his brother asked him to come back about a week later. The sons agreed their mom needed to go to skilled care (she got the same room her husband had - he died a few months prior). She made a good transition to skilled care, but about a week later, her meds stopped working for her hypertensive heart disease - as soon as we knew about that medical turn, DH went again. We told his brother in TN he needed to go ASAP if he wanted to see her before she died. They thought because she looked so good on their call a few days earlier that they could delay. She died the night before this son got there, but he had seen her a few months earlier in person. DH was at bedside until his brother 5 hours away came and spent a day with her - and then the 3 brothers coordinated with being with her. She died in her sleep (what Catholics pray for!). Local BIL (near local - lives about an hour away) is a pharmacist and familiar with her meds/care/local situation.
We just got a call about BIL in TN being in the hospital. His health is not good. Co-morbidity situation, diabetic, morbidly obese, etc. at age 70. Their only child does live in same town. Wife is obese but not quite as bad shape as he is. She has needed to help him shower for example. They are facing changes that are going to be hard - their home doesn’t work for them anymore, but not sure what decisions they will make on it.
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At my monthly lunch, we had a discussion about caring for elderly parents. One person mentioned a family where the elders had made their own decision about not moving from their home and not allowing any caregivers. Their kids didn’t feel these decisions were good ones and were thinking about seeking conservatorship.
One of the folks at the table is a lawyer. And I did a conservatorship with my mom (probably the most difficult decision I had to ever make in my life). We both asked if the parents were capable of making decisions, and the answer was YES, but that they weren’t good decisions. The lawyer explained…conservatorship is done when the person is not able to make decisions…not just because the decisions made aren’t good ones. The elder parents will be assigned an impartial lawyer who will interview them. If they are capable of making decisions…it’s not likely a conservatorship will be granted.
It’s very hard when someone knows the decisions aren’t the best ones for the elders…but elders are allowed to make their own decisions…if they are capable of doing so.
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What does “not able to make a decision” look like from a practical standpoint? I think most of us have experienced elders making bad decisions, but as you point out, that’s not always legally actionable.
In my experience, the impartial lawyer interviewed the parent. It was very clear that they were unable to make decisions (advanced dementia…had no idea why the lawyer was even talking about). This was a parent who refused to do a POA for anything…and that’s one reason why a conservatorship had to be done. I needed to be able to make decisions…because my parent was not capable of doing so…
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The bar is set for people to maintain their own autonomy. If people are oriented x3, and managing their ADLs, it’s very hard to declare them incompetent and appoint a guardian/conservator. Easier if there is a dementia dx but still would not happen until further into the disease.
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