Aging in Place: Thoughts from "1st responder caregivers."

[Anonymous]

Curious to hear from other people who are what i call the "first-responder caregivers" for parents aging in place. I don't mean the people who get to visit a few times a year and call occasionally. I mean those of us nearby enough that we show up and deal with a lot and we see the reality.

So here are my thoughts and curious to hear from others.

1.) It may work for those who age gracefully, but it can turn into a nightmare when things like Alzheimer's set in.

2.) You need to think about things like steps and bathroom safety and living walking distance from physicians when you are still capable.

3.) I think it can put a huge amount of stress on "first-responders" when people insist on aging in place without learning how and taking actions to do so safely BEFORE major age related issues set in.

I did try to have the difficult conversations with my parents before all this and they refused to face reality. I think because they ate healthy and exercised they assumed they would be immune to aging and I think because they were not "first-responders" for their own parents they chose to be blissfully ignorant and tune out their siblings. Not everyone has options, but they did and chose to live in denial.

[Anonymous]

I spent about 10 years of my life being the first responder, even though mom moved to assisted living/nursing home five years before she died. She was still out of town and I had to drop everything and go when she was hospitalized or needed a visit. My sister went once a year for two weeks and considered that her contribution. We were both working. It was hell. In retrospect I should have moved mom here, taken over her finances and locked up her valuables (sister took everything she could get her hands on, often without permission).

[Anonymous]

Anonymous wrote:I spent about 10 years of my life being the first responder, even though mom moved to assisted living/nursing home five years before she died. She was still out of town and I had to drop everything and go when she was hospitalized or needed a visit. My sister went once a year for two weeks and considered that her contribution. We were both working. It was hell. In retrospect I should have moved mom here, taken over her finances and locked up her valuables (sister took everything she could get her hands on, often without permission).

I am so sorry you had to deal with that. How awful!!

[Anonymous]

I forgot a really basic one that is so important..


If you plan to age in place, you must be willing to have a nurse or aide in your home at some point down the line. Common sense and yet at least for my own parents they will not let anyone in the house. Believe me I have tried everything.

[Anonymous]

My piece of advice: Adult children and their parents need to discuss medical and durable POAs when the parents are still competent. If a parent starts to decline, especially with dementia, it's generally too late to get POA; you then would need to go through the guardianship route, which is much more complicated and has a larger burden of proof. A lot of the time, dementia causes paranoia and hallucinations, so the elderly person may not want to have anything to do with their children, who may have only their best interests at heart. This leaves the situation ripe for scammers, and unscrupulous relatives to swoop in and take advantage of the situation for their own benefit.

Just because there is a POA, it doesn't mean it takes effect once the papers are drawn up. They generally can't be implemented until the elderly parent is deemed incompetent (usually by two doctors). I think there is a fear by elderly parents that once a POA is created, they have no control over their own lives. Talking with parents (and the attorney who draws up the papers) should help to allay that fear.

Also, think about having backup POA and even a second back up added to the document when it is created. If an elderly person designates their spouse or sibling as their POA, maybe by the time they start to decline and need help making decisions, their POA is either deceased or has dementia themselves.

[Anonymous]

I had to drop everything and go when she was hospitalized or needed a visit

You felt an obligation. And that was very nice of you. But not everyone has someone. Hospitals arrange the discharge, the discarge to somewhere. You choose to do these things. It was a very humane decision but you didn't have t.

[Anonymous]

Good point about allowing help in the home. Mom and I need to have this conversation asap. Just saw her today and she can barely get around on her own two legs.

[Anonymous]

I wouldn't feel inclined to enable a parent to stay in a bad/inappropriate living situation. If they want to age in place - fine. But they need to be able to figure out how they are going to make that happen.

Expecting their adult children to drop everything and rush to their side at a moment's notice, multiple times a week is too much. Even if you don't mind doing that what happens if you or one of your kids are sick? What if your car is in the shop? What if you have to travel out of town for business or want to take a vacation or just go away overnight with your spouse?

You have to give yourself permission to say "no" to this kind of roller coaster. If your parent isn't capable of living independently then they need to move to a more suitable environment. Period.

[Anonymous]

My parents did everything wrong. They made a blanket statement: “we are staying here.”
They did absolutely nothing else to prepare. Mom said “our friends will help us.” They outlived most of their friends (who all had local children to help them). When the crisis came and they were forced to move to a more supportive environment, they refused to sell their house and left it sitting full of the “hoard” until two years later (after they had forgotten to pay the property taxes) they decided to sell it and called me to clean it out.
What should have been their golden years of walking the beach and playing golf turned into isolation in their own clutter filled home, eating rotisserie chickens because they were easy. Guess that’s what they wanted.

[Anonymous]

I think you need to stay out of it in less you are planning to really do something. No one needs your opinion when you have no experience in it. Its easy to give advice, much harder to do.

[Anonymous]

The case for moving to a retirement community (or any sort) vs aging in place is social. My parents would have more social interaction each day by merely walking down the hall than they had during an entire week living in their own house.

[Anonymous]

My mom moved to a retirement community. It was worse than middle school. The cattiness, gossip and cliques were unbelievable. It was really hurtful but she bought into "life care" and couldn't get out without losing her investment.

Most of them have guest suites that are furnished. Try them out for a month before you commit.

[Anonymous]

My mom redid her apartment so she could age in place, including widening the doors so a wheelchair could get through and completely redoing the bathroom to put in grip handles and a ledge where a future CNA could sit to help bathe her.

At the time we thought it was a fabulous idea. She had money and a nice apartment (you know the building) she wanted to stay in.

In retrospect, not so much. Although she started acting bizarrely, she refused to get help even just in the mornings to get her oriented. My sister and I dragged her to her doctor to get him to tell her to get a CNA, because we thought she’d listen to him. He ordered an MRI and we expected to find a stroke, but it turned out to be brain cancer. A week later she had the operation and never got out of bed again (although she did have 24/7 CNAs).

Learn from our mistake: don’t make modifications to the house until you’re sure your parent will use them.

That said, there are some cool things out there. Like runway lights to the bathroom at night. And a refrigerator that calls you if your parent doesn’t open it by a set time each morning.