Parents caring for the parent support thread (Part 2)

I think everyone needs to make their own choices.

I will and have told my husband and children that if I can not take care of myself that they have my permission to let me go into a facility if that’s the best decision for all of us.

I won’t guilt my family into saying never. But I know many elders who took care of their parents and want the same for themselves. I’m in my 60’s now, my mom and mil may have another 10-15 years. It’s very different than the life span of my grandparents.

My mom fell over the holidays. She couldn’t get out of bed to use the restroom. I could not physically get her out of her bed. She has all of her mental abilities. She knew a rehab facility was the only choice. I’m so happy she understood.

Her roommate when she got there was extremely unhappy being in the facility. She took care of her parents, she wanted out and wanted the same care.

Except instead of having 6 brothers and sisters to take care of her, she had one son and an elderly sister. She couldn’t even get out of the chair to toilet herself. The facility tried and tried to get her to stay. I think her son was still working and so wasn’t able to be there all the time. But home she went. Unable to take care of herself and not much of a support system.

I’m so relieved that my mom has been cooperative.

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I think the word “facility” is a little triggering. I think we might instead call assisted living or even memory care a “residence”! My mother’s assisted living did not really feel like a “facility.” I am sure this varies, but terminology has a lot of emotional weight.

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As to meds–If you have meds that are 3-4 times a day ask the pharmacist if there are alternatives to get whatever you can down to twice daily so you have just morning and evening.
And while some are specified “every 6 or 8 hours” for example see if it’s okay to focus them around meals–breakfast, lunch, dinner, bedtime.

We got most of my dad’s meds down to twice daily and made it breakfast and dinner. Then we left the container on the kitchen table so it was easy to remember. (the extra 3 weekly containers were left in the kitchen).

We bought pill containers from Walmart (they make them twice daily up to 4 times daily) to last one month. By filling the containers for a month it was a one time thing to keep them filled and easy to know when refills would be due. Most pharmacies will do auto refills and they’ll call you to pick up the prescriptions.

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I’ve been really struggling with what to call where my mom is.

My mil is an RN who worked for years at a rehab/nursing center. She always called it the facility. So that’s what I’ve been going with.

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I’m glad my dad had the resources to live in a really nice place. His apartment is awesome. The facility reminds me of a cruise ship, ha. The food is incredible. Dad is a very proud man, and he is so happy to be there. He is making friends left and right, goes to lots of events, and even gives lectures on structural failures. The main comment I’ve heard from other residents is that they wish they had moved there sooner.

It’s funny, because Mom wrote out a statement years ago that she understood we might need to put her in a facility one day, but Dad wouldn’t do that! Mom ended up passing two weeks before they were supposed to move to independent living.

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To my mom, we called her facility “her house.” It was a resort style, multi level of care, senior living community. Honestly it looked like a nice resort with a swimming pool, multiple gyms, fancy restaurants, high end decor, gardens, etc… For the independent living folks, they had cocktail hour every night with live music. It was nicer than their condo.

Honestly I could see moving to a place like that myself and we also told our daughter, an only child, that she shouldn’t feel guilty if that’s where we need to be (even if we say ‘no’ at the time). Our only requests are that it’s a nice place and it’s near where she is living so she can come visit regularly.

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We are having a backup generator installed at my parents’ this coming week, arranged by Preferred Sibling, paid for by my parents after the umpteenth power failure at their house. We told them they get a backup or we start looking for somewhere else for them to live. Local sib and I think they need to move anyway; preferred sib says lets give them some more time.

My inlaws (saw them over the holidays) are still solidly in denial. In their early 80’s, they live in a home that has stairs on every single level, and since they like the modern look, no railings. She has trouble remembering simple things, he is out of breath after one flight, hard of hearing, 50lbs overweight and their main hobby is going to auctions and buying heaps of useless stuff. DH and BiL have made it clear they want to talk about moving,(my inlaws are hours from all family) but FiL keeps saying he needs to “make the house high end” but just bought (not kidding) 36 giant ornaments to hang from the cathedral ceilings. “Where you gonna put those” we asked. “Well something has happened to shed #6 and that stuff is ruined so maybe in shed #5”. BiL got into an argument about buying things you cannot store and MiL just laughed. We asked, well, can we clean out shed #6 and FiL got super defensive about how some of it is not ruined,he’ll need to look at it “when summer comes”

Anyway.

My DiL’s mother was inconsistent with meds. Refused help, office of aging, social services, met at the property line with threats of lawsuits if they came closer. Refused to speak to her daughter, her neighbors (they were all “trying to make me do things”). Retreated to the house. And not even 80, she died alone in the house, undiscovered until her doctors called the police. My DiL is so traumatized by the past 3-4 yrs and this outcome…

Hugs to everyone who feels helpless. Keep doing what you can, even when they don’t understand it is necessary.

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@deb922 at assisted livings, residents are tenants, not patients, so that influences me. Of course the tenant status caused all kinds of problems since my mother with dementia refused help and as a tenant had that right!

One other point: family involvement is still high as AL’s and MC’s, often daily, but the person is safe when you drive away and get some sleep!

Well, Day One of Operation MawMaw went OK. Just got off the phone with her and texted with my sister.

My sister has not spent the night in that house with my mom so didn’t realize my mother thinks she’s a hothouse orchid and keeps the temperature at night at 84. That meant her asthma flared up and she only slept four hours. It’ll be a learning curve for her.

Then my brother got on top of the meds situation, but he told my mom to take double the dose of an OTC med because that’s what his wife’s doctor told her to do. Well, my SIL weighs 250 if she weighs a pound, and my mom is 115 so I told my brother to back off that recommendation. But at least they finally are monitoring the meds.

If I had my way, mom would come here. Dh is so patient and good with her, and I am kinder than my sister. But that’s not going to happen so no use spending energy on that. We are a pretty functional group even though we are wildly different (well, I’m different than my sibs). I know everyone wants the best for her, even if we disagree on what that looks like.

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I loved my MIL’s AL community for her. It was her own space (she lived independently in half a duplex), but she was right down the street from my SIL and her family. There was no maintenance, and she could call to have someone change a lightbulb or whatever. I think my mom would LOVE that kind of setup as she could have meals in what we affectionately called “the big house” and play Bingo and whatever. My mom is so energetic, and I think she’d appreciate the mental stimulation. Right now she spends a lot of time watching the GameShowNetwork.

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Same happened with my grandfather. He became agitated and aggressive at times and it wasn’t safe for my grandmother. He was in a nursing facility for about ten years. My dad and his siblings had to go to court to get guardianship over him to force his placement. I remember how distraught my dad was.

With my mom, one day she just stopped sitting up and standing, even with my assistance and her gait belt, making it very difficult to move her to change her. Then she added screaming to the mix and it was impossible. You can’t honor “Don’t touch me!” and also keep the person clean and properly cared for.

I have two people working from home here so bringing in outside help would have been disruptive for them, especially as her screaming increased. It’s shocking to hear “You’re hurting me!” when you are standing two feet away and not touching the person!

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No railings?!?!?

That’s going to be some fall down the stairs someday!

And it’s a code violation. I wonder how the house got an occupancy permit?

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My father had very high needs at the end of his life: deaf, couldn’t walk, incontinent and dementia. I was adamant that I wouldn’t put him in a nursing home, and his set up allowed for that. I got a 24/7 live in aide, plus hospice support. He was quite content in a familiar setting, with his dog, and my mother, and help available any time he wanted to move from say, couch to table. In a nursing home he wouldn’t have gotten one on one care.

Now that my father has passed away, my mother is desperate to move to assisted living and I’m doing everything I can to make it happen asap. She feels isolated and wantsxa lot of people around all the time. Plus she’s high functioning so doesn’t need physical care, yet. Plus, she’s delusional and verbally abusive, especially to me. So, assisted living, here we come!

One thing to consider is the role of dementia. What @MaineLonghorn describes is fantastic if you are cognitively sound. I have found a facility that follows The Greenhouse Project model of dementia care, and think it’s a much better fit for my mom. She can’t participate in a book discussion group, but she would love to join the walking group, eg. Something to look into if anyone’s caring for someone with dementia.

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Yes, I know the situation will change if Dad deteriorates mentally. His place has a good reputation for independent living, but not so much for more advanced care. I guess we’ll worry about that if/when the time comes. It’s good to hear about that model of care, I will look it up.

the steepest stairs are 8 steps, with a broadly defined “railing” that is 14" wide (so you can technically use the far edge as a rail, if you can make leaning over work) Stair treads are so narrow my husband goes down sideways (got a size 12 foot)

Railing in the central, open staircase, is a wire.

Garage railing is inaccesible due to the pile up of objects leaning against it.

Back staircase (onto outside deck) is so unstable my BiL demo’d the bottom 3 treads and nailed a babygate across the top until it can be fixed. This is a very large,very upscale home that they can no longer keepup with.

I agree, whoever approved the permit or did the alterations should be ashamed. But here we are.

Both my parents are gone, and I still visit this thread! Partially because I hope to gather information on how we can better navigate this part of life for us and our children. Hopefully if I learned anything not already stated by others, I’ll share as well.

Two bits of advice given to me on my past journey:

  1. When my father was diagnosed with a neuroligical disorder, I called the local (very active and helpful) aging council, hoping to find resources and advice to move him into my home. Their advice? Don’t. That was totally unexpected. They shared that while it might seem the prudent and loving decision in the beginning, it takes a tremendous toll on your family & job long term, especially as the parent’s disease progresses. Perhaps with unlimited financial support and an assistant, it might be possible.

  2. A dear friend explained that her decision to find a facility for her mother, enabled her to be a full-time daughter, rather than a full-time caregiver, which she knew was not good for either of them. I think ultimately, it was the best decision for them.

Despite common threads, each journey is also different. One common theme I read is the feeling of “guilt” for the temporary lapses in patience. I’ve been there too, but a family member reminded me that no one can be 100%. 80% (90%?) is pretty darn good!!!

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I haven’t posted here in a while. My 91 yr old father, who lives in an assisted living, has been in the hospital for about a month now (had an infection - one of several this year and his 10th hospitalization this year). I had already been working with his lawyer (an elder care specialist) about getting him out of the assisted living. He is almost out of money to pay for that and his needs have increased (they do not have an affiliated nursing home). Because of their limited medical resources, any slight fever or low oxygen level means a 911 call and a hospital stay.

He is ready to be released but he needs rehab as his current condition is beyond the care of the assisted living facility. So, the new plan is to hopefully get him into the rehab section of the nursing home where we were already looking to having him stay long term (they will accept Medicaid when he very soon runs out of money). This should mean only one move (instead of 2-3).

As usual it has been a bit of a roller coaster. This stay required a nasal feeding tube for a few days, which triggered calls from hospice about stomach feeding tubes and end of life decisions. None of which was needed as he was able to eat again after a few days (so they just worried and scared me before the holidays). He is a terrible patient, pulls out his breathing tube and catheter, so they tie his hands etc. to keep him from doing this.

I know that he will be unhappy in the rehab and the long term facility (basically at this point he will be unhappy anywhere). However, I think he will get much better care at the long term facility (they have PT, OT, & physicians on staff) and hopefully will stay out of the hospital. One plus is that the place we are looking at is closer to my home.

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Is your father able to communicate? Why do you think he is pulling out the tubes?

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Your strategy is a good one. I hope the facility close to your home meets all the criteria you have.

I worked at Skilled Care/Rehab the last 5 years as a RN/BSN before I retired at 65. I worked for a facility that started as one facility and grew to a lot in our state and 5 in each of 3 surrounding states (that model worked for them with the growth - they had a regional manager over 5 facilities). I first worked in skilled care, and later as an admissions nurse on the rehab side.

A facility that is part of a ‘network’ may be the place to start looking. They can keep up with all the rules/regulations and a decent standard of care.

Hospitals often have a list with ratings of local rehab facilities - ours was usually the top or tied for the top of the listing. I would talk to hospital social services and find out where to check from them.

I would pop in at both the rehab and the skilled care side for a general look around - you need to go through their front office (Administrator/staff). Do get up front information and if they have bed availability for his situation. When hospital is ready for discharge, make sure he does go to the rehab with the skilled care/nursing home facility he can go to so when he does make the transition to Medicaid payments, he can stay at the chosen facility. Do make sure that once his rehab days are over, that they can have a bed on skilled care (they may be able to have him be skilled care while waiting on the rehab side for a bed). Our rehab facility was all private rooms - and our skilled care had a mix of private rooms and two person rooms.

The rehab side of our facility was very warm, home like. Rooms more upscale. Skilled care - one has to put in their own TV and pay for cable for example.

As you say, he is not going to be ‘happy’ but hopefully he will adjust and find the new normal satisfactory. He needs that new level of care, and that can be the focus.