Parents caring for the parent support thread (Part 1)

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@compmom don’t do it :wink:

We installed all sorts of helpful stuff for my mother, in our home, we had to tear out a bathtub and put in a walk in shower. She lived with us a decade, but once the dementia was undeniable, it became quite an overwhelming lifestyle. When she died, it was just a few months before my self imposed deadline as to how long I could keep doing that. It’s been nearly a year and I am still venting, slowly, residual feelings-mostly anger at all the siblings who could have even 10% more than they did and made her life (and mine) a little easier. I did not have time to whine, much, when it was all unfolding. It was a round the clock obligation, though, yes, I would sometimes leave her for an hour or so a day. And, yes, sometimes she fell then, but she often fell with a houseful of people, so it was a sanity measure.

What about a board and care home where she could get more individualized attention?

Does the drinking make her unsteady? Fall more? Angry? If it was just relaxing and not overdone, I would not fight it, but if it was dangerous, yah, that’s not good. What about giving her tonic water mixed with something to emulate the flavor?

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We own our place. We had mom at our house for two weeks. We never felt comfortable leaving alone—thought she might feel abandoned or roam or who knows what.

She’s been at my sister’s now for several months but we take turns helping by taking her out all day. She’s never been a drinker but did have a very rare glass of celebratory champagne when my sister took her out one night (it was on the house).

Several of my siblings have stairs in their homes. She has learned to climb up and down them ok.

As a landlord, I wouldn’t want a tenant making changes—liability issues. Modifications can also be costly and may not be that attractive to subsequent tenants.

I agree that a board and care set up may work better and be more “home-like” that can be the best of all worlds. It really depends on the owners and staffing, so do your research carefully. My friend has her mom in one and has been thrilled by the care and meals her mom receives.

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It’s always a godsend when she is horrible to me over the phone. Really makes me think!

Today I was talking about stairs and she informed me that she could still play tennis and that she felt so sorry for all the people around her who have trouble walking (she has a walker). My brother is finally coming with me to visit her (first time since mid-March, but everyone does what they are able to do) and I told him to bring his racket!

She can handle 2 oz gin martini (her preference at the pub before it closed in her AL) and a glass of wine. But if she is out of there for a visit (before COVID) she has her one drink and wants another and causes a scene. My brother endured this and was literally shaking. I had left earlier and had to check on HIM by phone. She wanted more, more more. The AL sent her to detox a few years back.

At one point, before her dementia was a little better, I tried dilution, substitution, bring her nips instead of a big bottle etc. etc. I tried everything. She told me she would disinherit me if I didn’t bring her a bigger bottle etc. etc. and I said “okay.” The AL sent her to the detox but left me to limit her. A year of rage. Then her dementia helped me out because I could say I would buy some gin and then she would forget. I also took her to stores to “get gin” but I knew the stores didn’t carry it.

You can see this could be a problem. In her mind, she returns to previous stages of her life (tennis) and would return to cocktail hour and would probably invite some men over!!!

I talked with another daughter of a resident with whom I have become close friends. I think that this separation is just the way it is going to be. COVID isn’t going anywhere, and neither is my mother.

I just signed up for some classes. Since I can’t see her, I might try to finish some training and work. Almost 70 but what the heck.

ps no board and care homes here and colostomy might be an issue; after COVID I have located a nursing home with only 10 residents with price comparable to AL

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do they stay on the first floor?
Yes. We moved my H out of his home office, painted, bought a bed, brought dressers down from a kid’s room, and bought a cube thing with some fabric drawers for my mom.

Do you have a shower on the first floor?
No. At first, she was able to do stairs with me following close behind. For 3-4 years now, she hasn’t been able to do stairs, so I have had to give her sponge baths and wash her hair in the first floor bathroom.

hand rails?
I added grab bars in the bathroom on the side and in front of the toilet. I also added a grab bar in the garage and smaller handles in the door frames of the front door and garage door.

Do you cook every meal for them?
Yes, for seven years. She could grab yogurt and a banana the first year or so, until she got worse.

Disable the stove when not cooking yourself?
In the beginning, yes. I removed the knobs.

How do they react to that?
She was still mostly independent when she came here to live. She was unhappy, mean, confrontational, stubborn. She thought (wrongly) that she could still do many things that she could not.

With moderate dementia, are they ever left alone for an hour or two or three?
In the beginning, I could leave her alone for an hour or so. She could still walk (no walker), understood the basics of getting in and out of the house - and when that might be warranted. Now, I only leave her when my husband is home, in the mornings when she is still asleep. Of course, since January, I only leave the house every 10 or more days for a quick trip to the store. H grocery shops on alternate weeks.

My mom doesn’t drink, never has.

rent rather than own? No, we own.

I’ve never used an aide or nurse, so far. I was close to feeling ready to place my mom in a SNF when covid broke out. I have mixed feelings now. Glad I get to see her. Glad that her risk of catching covid is small due to our precautions. Sad that we have no visitors and she feels isolated and lonely (as do we). Sad that Zoom overwhelms and confuses her. Trapped that I’m not able to safely place her (guilt that she might get sick or be banned from visitors). Depressed that nothing may change for the better in many months or a year.

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Thanks to all for the thorough responses.

I think the key factor here is that we would be renting, and a new apartment, since I am now in a very small one bedroom.

It seems that not that many CC folks are renting :slight_smile:

It seems I will revisit this every 6 weeks or so. It is a cycle that just reflects the struggle so many of us with parents in facilities are going through. Kind of Kubler-Ross thing.

I am sorry that elderly parents are also feeling lonely and isolated while living with family. (And that you are too.) In some ways, that lets me know that the grass isn’t always greener. My mother probably interacts with more people in a day, and has more freedom to move around, sit in the garden and so on, in the facility than she would if she lived with me.

Every single night she calls and asks to live with me. It is understandable that she wants to escape. I am going to try to see this as an expression of an emotion, a rejection of rules she doesn’t understand but are keeping her safe.

Very often she expresses an emotion in interesting ways- a longing to play tennis, to handle her check book, to get rid of her colostomy, to leave the facility- that may seem irrational but make perfect sense if I consider the emotion behind it.

I always appreciate reminders that my needs count too :slight_smile:

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@compmom long ago I recommended that you join this thread. I am so glad it has been helpful. It was to me in so many ways when I was dealing with the care, decline and death of my father and stepmother in 2014.

I am so, so grateful that I am not dealing with a pandemic on top of the oh-so-complicated and emotionally taxing needs of my father and stepmother, just as I am so, so grateful that my daughter is grown and flown, rather than a young child stuck in the house with me. It seems that even in the best of times, the decisions we make are compromises, and much more so now. You definitely need to take care of yourself: the old trope about the oxygen mask on the airplane with a child is doubly so with an old, needy parent. And it sounds like the social benefits of your mother staying where she is are good for her and good for you, now that you finally solved the colostomy problem. It may pay to use the fact that you hear her tell you she wants you to move her every day, but it’s not like she’s counting the days she tells you. If only we could clean out our memory banks (selectively of course) the way those with that aspect of dementia do.

As for your apartment situation, it sounds like if you can afford it, it may be a good idea to look for a place with a little more elbow room so that you can feel less worried about whatever may come up, not just with your mother but also with your children. But if you can’t, you can’t.

(((((hugs)))))

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Thanks @oldmom4896. I hope my posts are helpful to others :slight_smile: Lots of people dealing with the same issues.

My one bedroom has a tiny extra room that my daughter squeezed into from Feb. to May and she is now in an apartment with peers, with less worry about infecting mom.

I wish I had a bigger space but it is what it is. Downsizing is fashionable but with the housing costs in the Northeast, actually necessary for many.

Take care and stay well all!

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What type of doctor manages dementia or similar conditions for your parent?

My mom had a stroke that caused a lot of cognitive issues. She saw a neurologist in the hospital and once afterwards and I am probably overdue to take her again, except the last visit he mostly checked her reflexes and asked about more physical things. (In truth, she would not be able to answer a lot of other question - “who is the president, remember these 3 items etc”)

As I have mentioned here before, she is exhibiting some behavioral issues now. Besides arguing with dad, I was told that today she is being rude to and kicking at other residents. The doctor in house saw her and is asking for a UTI test and another psych consult.

I am praying it is just a UTI. But she has seen the psych twice in the last month - I guess I am used to a psychiatrist working WITH the patient, who is aware of her problems. Maybe the PCP thinks it is time to move to Depakote or Risperdal or some other psychiatric Rx to help her. I am not opposed to that. I don’t want to, nor do I think I could handle, moving her to another place. (Where do dementia patients who are behaviorally inappropriate live? I don’t think I want to know . . .)

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When my Dad was first diagnosed with dementia/Alzheimer’s he spent two weeks in a psych facility (referred by a psychiatrist he saw at the hospital after a fall). He saw a psychiatrist and a neurologist. He went from the psych hospital to Memory Care. Now he sees a group that specializes in geriatrics (they go to his facility). He sees the physician, the regular PA and the psychiatric PA ( or maybe they are NPs, I am not sure).

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Well my 91 y/o mother was out of the hospital for a week and now back in the last few days. Tearing of skin on one leg and not sure why and a scab off a hematoma on the other leg. Staying a few days then they will release her. She is so sick of going back and forth. We are talking more about a facility for her but keeping her at home will be preferable, of course. My oldest sister is the one that goes there at 1:00 am to have the paramedics take her. Last week it was her blood pressure not being controlled. I think it was cross medication and they took her off like 3 meds and actually doing great until the spontaneous skin tear. Since on blood thinner she just started bleeding like alot…oy! Well shes in good spirits at least today.

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@Knowstuff what blood thinner is she on? My mom was going to the ER with bleeding skin tears (bedroom looked like crime scene, skin tear was tiny). We got her INR range changed to 2.0-2.5 and it has helped. I ask the Coumadin Clinic to call me every week and at this point, remind them of skin tear and nosebleed problems, and almost tell them what to do. If it is a different blood thinner, I don’t know much about them. But for a long time I did not know we could restrict the INR range.

Curious why it feels better to have her at home versus facility. Of course the sales departments will tell you otherwise :slight_smile: But that is a question many of us are facing and sometimes people thrive once in assisted living.

@surfcity did your mother have dementia before the stroke? How long ago was the stroke? Both my mother and ex-husband had strokes. My mother lost word-retrieval which improved some over time. My husband had violent impulses followed by flatness and a permanent personality change . But over time he stopped sleeping 22 hours a day. My mother’s own partner had a stroke, was a lovely man, was paralyzed and had trouble speaking except for swearing.

All three did have quite a bit of improvement over time, but with some permanent effects.

My brothers thought my mother’s word-retrieval issues were dementia, and that she was not longer cognitively competent. But I could see that she was still very intelligent and that it was just a small part of her brain.

I guess my point is, whatever is going on is clearly part of the stroke effects, but is it also dementia? Strokes can cause disinhibition. So can dementia. How are they teasing out the distinction, just curious.

I don’t think it makes any difference and I may be dancing on the head of a pin, but maybe medications choices would be different.

My mother suffers from both post-stroke issues and dementia but I find it easy enough to distinguish because her stroke effects were so specific, and she did not have dementia yet when it happened.

Tough situation!

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My favorite medical professional for my mom was actually the NP of the memory care unit who specialized in geriatrics. She was much more knowledgable about drug interactions in the elderly, what worked best for ALZ/dementia patients, and had the best bed side manner of any medical professional we worked with. There was an MD supervisor but she was way better and my mom adored her.

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Thx. She’s on Eliques so can’t go by that. It’s new to her since she had double lung clots like a year ago.

She /rather her be home. No memory issues except for being 91… Lol. She doesn’t cook as much but of course wants to be in her own home. We want her there as long as possible. We have seen relatives deteriorate quickly once in a home. But she loved playing bingo when in a rehabilitation place that also had living care with it. She was actually doing well and feeling fine. She’s just frustrated also. Like each doctor tells her something different… Agh…

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@Knowsstuff - I some how missed the post about your mom. I hope she’s continuing to feel fine and is able to get back home.

So, I haven’t been able reach my dad in the last 48 hours. 24 hours is not too unusual. 48 hours is. No one has heard from him and the neighbors haven’t seen him in the building either. I called the police department to ask for a wellness check. Praying it’s something stupid like his phone not working and the cell phone not charged. I haven’t been able to see him since my mom died in March. Trying not to panic or get ahead of myself. Could use some positive thoughts and prayers.

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Hoping for the best, @momofsenior1 . Thinking of you, and sending a fervent prayer.

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Yikes—scary when we can’t reach elders @momofsenior1 — hope it’s an innocuous situation.

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Praying, @momofsenior1. Keep us posted.

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Oh my, @momofsenior1 . Hoping for the best!

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@momofsenior1, any news? Praying it’s just the phone.

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My dad died. I’m in shock… I can’t believe he’s gone.