I believe our kids WANT to be involved in the last stages of our life, as both flew down from their respective places to be with my folks as well as my SisIL. It was important for them to be there and that was what they chose.
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It sounds to me like your mother, although in assisted living, really needed skilled nursing. All the things you mention (wound care, colostomy care, etc.) would have been handled by a skilled nursing facility.
When my father was in an assisted living facility he was sent to the ER many times. I was never with him (too far away to get there in time). The assisted living sent the information on the patient with them (including detailed paperwork) and I was frequently called and asked questions. Hospitals do not depend on elderly patients being able to communicate their issues.
Skilled nursing has varying degrees of helpfulness. Ours was OK but not as good as we had hoped. That’s why we visited daily.
@kiddie yes some of my efforts were to prevent transfer to a nursing home. My mother had been in assisted living for 7 years, the staff and other residents knew her and cared about her, and she suffered extreme disorientation when moved. But the main obstacle honestly to good care in AL was that residents were "tenants: and so my mother could refuse help. As her daughter I could force her to accept help from me, and eventually hospice could force her (gently but firmly) to shower or clean up, since then she was a “patient.” Memory care would have helped but the facility kept people in AL despite my constant requests. The nursing homes around here are horrible.
Some posters have more trust in the medical system than I do. (Having a kid with type 1 diabetes will do that to you.) I maintain my presence was necessary for my mother in the ER or hospital. Diagnosis and treatment could sometimes require more complex information than the AL provided. Once she was admitted for dehydration but the IV pole stood in the corner for two hours while I tried to get someone to hook it up. Once her eGFR was 17 (serious kidney value) and she was given a cup of water: I transferred her. Many times MD’s wanted to take her off blood thinners for suspected GI bleed but she had had a stroke when blood thinners were stopped for a procedure and they were clearly horrified when I told them and kept her on (and there was no GI bleed anyway). I helped her refuse useless CT’s which would have required hours more in the ER. I listened to discharge instructions and then passed them on to the AL nurse. I also had to be present to evaluate surgery vs hospice.
@kiddie your experience was very different. Did your father have dementia? @ChoatieMom clearly your parents didn’t. My kids are also in their 30’s (33, 35 and 39) and as long as I keep my marbles, I would aim, like you @ChoatieMom, to spare them any burden. If I do lose my marbles, unfortunately, that will be a different story. I won’t be in a condition to choose. The main reason I had to be so involved was my mother’s dementia and unless you have been down that road, it might be hard to understand.
Here’s to cognitive health for us and freedom for our kids!
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Agree, both my parents had/have dementia, and that also informs my outlook. @compmom talks about decisions when a loved one needs a lot of care, but there are issues that come up long before that. Who takes the keys away when driving is no longer safe (which can be LONG before a guardianship is considered)? Who stops the loved one from being scammed? (I had to unwind a $25,000 contract for a totally unnecessarybathroom renovation my mother signed up for which was adjacent to my father’s deathbed). And also – who petitions the court for guardianship anyway?
Other things to think about: how will your son feel, @ChoatieMom if he disagrees with what the guardian, or health proxy decides? How will he feel if the fees paid to the Guardian etc deplete your estate? (Understanding that no one should count on an inheritance. . . But that it might be hard to see $$$$ go to strangers when it otherwise would have gone to him).
You may have thought of and discussed all this already; I raise it in case you haven’t.
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This thread is about our own search for communities but I think this is relevant: there should be no need for a guardian, however timing is of the essence. I had an MD sign a one page form activating the proxy, which then activated the POA. The trick is having the person sign the POA and proxy while still competent, and then when they aren’t competent anymore, the documents can be activated. Legally, I WAS my mother. So that also had ramifications for involvement level. I gave permission for treatment on site, for instance.
@cinnamon1212 makes a good point. The slide in cognition can be gradual and our involvement also increases step by step. Paying bills was one of the first things: I discovered many were overdue, and then I discovered an extra zero on a check!
I am assuming I will stop driving at some point. I am not buying another car. Another reason for either city or CCRC. I convinced my mother that in order to prove her ability to drive, she should get tested at a rehab. Very manipulative! She failed miserably and the rehab took her license away on the spot.
Again, if there is a spouse, things may be different. If there is no dementia, things may be different. My support groups consisted mostly of spouses dealing with a spouse who was either infirm or had dementia, but they were still living at home. These communities have a lot of single women, divorced or widowed or unpartnered.
My memory is still “normal for my age” and I hope to keep it that way, but who knows.
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All this planning would be so much easier with a crystal ball!
I agree that dementia adds its own layer of complication for patient and family. And I 100% agree with the posters that say it’s gradual and that all kinds of things need to happen long before there is a need for a care community.
I also agree that you certainly can have a court appointed guardian if that’s preferable to family. I had a friend who did that for many years. She was kind and caring. Where it got tricky was for hospitalizations or if suddenly there was more of a skilled need, etc…. She used to say that it was easier for family to push back on the issues that weren’t quite so black and white than a legal guardian.
I’m still hoping that the death with dignity laws become more encompassing before I need them and we can really spell out what we want for ourselves, including if dementia sets in.
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My 90-year-old dad should not be driving, but I have no right to take away his keys and wouldn’t try.
No way I can prevent that unless I’m consulted in advance about the scam.
We definitely have, especially as he’s watched us navigate these waters with his grandpa.
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I am hoping self-driving cars become commonplace by the time I have to stop driving!
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There is a difference between having a child have responsibility for our care and having them visit and relieve the loneliness that comes with poor health. Also, no matter how good the place is, having someone check in on whether things are going well is very helpful. My FIL was in a wonderful continuing care community with a communal lunch each day. However, he lived far enough away from his kids that it was a plane trip or a long car ride to visit. In his last years of life, he did not get many visits from them. We lived on the opposite coast but my DH went every few months. My two SILs did not visit their dad at all in his last year of life, until the very end. That made me want to live within visiting distance of at least one of my kids when I am very old (he was in his 90s). But I would not want my kids to be burdened with day-to-day care or any guilt. My parents lived close enough that I was able to do their marketing, visit regularly and bring them over for meals. I did not, however, go every day or want them to move in with me. There are no easy answer.
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I am considering moving to a community (CCRC) that has independent living with ability to move to assisted, skilled nursing or memory care with little increase in fee. This is a Type A contract. These communities have a lot of activities and amenities and are technically 62+ but most are late 70’s early 80’s. The residents seem very active and engaged.
If I wait until a community is needed, I could 1) get screened out or 2) have to pay a lot more. Of course direct entry assisted living around here is very expensive. Also waiting until needed may mean having less choice in where I go.
If I had a house and a spouse, I might be thinking differently, though at every tour there are a lot of couples in their early 70’s.
I have done support groups and education on dementia and hope the idea of medical assistance in dying does not become a common response. People with dementia still can have quality of life and deserve dignity and good services.
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@ChoatieMom so who will actually stop your father from driving if you don’t? It takes a lot of advocacy to get that done: doctors rarely seem to do it, sometimes police get involved, but often, until an accident happens, the very elderly just keep driving. Again, cognitive status matters, but reflexes slow for all of us at that age.
As the parent of a kid who almost died after being hit by a car (and still has disabilities), my mother’s situation motivated me to be do anything to get the keys and license away from my mother.
Back to communities: driving is no longer needed there. They have shuttles that go to grocery stores, general stores on campus, meals are provided once a day and so on. In the city there are Uber and Lyft. Uber has a service for the elderly and disabled. You can look up gogograndparent.com No smartphone needed!
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Some states have evaluations for drivers as they age.
Florida has confidential teporting law to allow unsafe driver to be medically reviewed.
2. How to Report the Unsafe Driver to the Florida DMV
Florida Statutes Section 322.126 provides that “any physician, person or agency having knowledge [of an unsafe driver] may report by providing the full name, date of birth, and a description of the alleged disability having mental or physical disorders that could affect his or her driving ability.”
This reporting can be done anonymously using Florida Highway Safety and Motor Vehicles Form 72190. When Form 72190 is submitted, if a panel determines if a medical review is necessary. If so, the driver is notified inwriting that they have 45 days to provide medical information from their doctor. Florida law requires the Florida Highway Safety and Motor Vehicles make a decision within 90 days of receipt of all requested medical information.
If driving privileges are revoked, the driver may, at any time, provide updated medical information for reconsideration.
New York also allows anonymous reporting. There are driver assessment programs too, so that it isn’t a son/daughter’s opinion of an elder’s driving skills. Sometimes they are called Driver Rehabilitation Services.
My mom’s neurologist told her it was time to stop driving. He told her she could kill someone and what if it was her grandchild. She literally handed me her keys. My dad sold the car immediately so she wouldn’t make a mistake a try to drive. She never once tried to drive his car.
Thankfully transportation options for seniors has gotten much better than even 12 years ago.
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I didn’t mean to start a tangent on driving! Glad to hear some states are addressing this.
Back to communities. I am looking at another one tomorrow, in NH. I see my options as 1) CCRC or other type of community 2) city with “village” type involvement 3) some type of 55+ housing with elevator 4) small cottage somewhere with walkability in town 5) wait for a crisis and enter assisted living!
I believe most CC members are married. I am divorced, probably older than most, and have maybe more health issues. At 74 I am told I am looking early but at the same time am being told that entering early is the best approach.
At some point, if it’s helpful, I will use my Google Doc on all these visits (12?) to summarize the variations and nuances here in this thread. A lot like college visits! I’ll analyze and then go with my gut.
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I love that you are being proactive and making a decision that works for you.
At my mom’s first CCRC there was a “younger” woman who moved in. I think she was in her late 60’s.
Mom said that she was a widow, wanted to make her own path, I think she didn’t have children but I can’t remember. She had a ball. No housekeeping, no meals to make. She had tons of friends in the community. Seemed to me a win.
I’m interested to hear if you are considering touring the community in center city Philadelphia. That option also sounds intriguing.
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The people we know that made the best transition to their CCRC were all younger. It gave them time to find their people, get a routine, and the staff got to know them when they were healthy and well so really knew them as they started to really need more care.
IMO, I think @compmom ‘s instincts to start looking now and make the transition sooner rather than later are spot on!
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My dad’s DL expires this month (AZ requires renewal every five years after 65) so, technically, he’ll need to appear at the DMV. What they decide is up to them, but my dad does not think the rules apply to him, so he’ll keep on driving regardless of the status of his DL. This is not my issue.
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