Share your stories about caring for elderly parents.

In My Humble Opinion
21

Getting my Grandpa & Granny to accept carers for Grandpa took a few Councils of Elrond with the family. He couldn’t get around anymore, and it was getting very difficult for Granny to get him dressed and help him in the loo. The sad thing was that having to take care of him made her bitter and angry, so she was just vile to him all the time. She would constantly berate him for trying to get up by himself, or embarrass him when he was confused by making him say what the date was, or the names of his grandchildren.

Before the carers I had been going over every week. Trying to get Grandpa to wear his leg brace. Granny refused to do it because it was too much hassle, Grandpa couldn’t find his own knee, let alone the hinge in the brace. Coming over every week didn’t cut it anymore.

At least the carers infuriated them both, so they both complained about and she left him alone. The carers were fantastic: attentive, remembered everything, tried to make conversation about Grandpa’s interests. They went above and beyond consistently, always remembering to do extra little things like closing the windows, helping with the dogs. They always left the kitchen immaculate. Terry was my favourite. He was the loveliest guy, though shooting, fishing and real tennis were clearly not his thing, he would chatter away to my Grandpa about rifles and things.

In return they got no gratitude from my grandparents. They would call me to tell me what the carers had done now, I would call the carers to thank them & tell them to take no notice if my grandparents complained. It’s just hard to have people in your house, they do things differently and when you’re 85, different is wrong.

Grandpa was always so active, it was really hard for him to be stuck in a chair. He said to me once ‘gracer, if I were a dog you would take me up the back, give me a pat and shoot me gently between the eyes’.

It was a relief when he died, though I really miss him. The last thing he said to my Granny was “darling, I’ve put a glass of wine out on the riverbank”. So it was good, I think. He finally wasn’t constrained by his failing body anymore.

Granny is still going strong, though she’s aged a lot since his death. She’ll be ok for a while yet.

22

If I were a good granddaughter, this is what I should’ve done:

I would’ve taken my Grandpa to Wern Pennant one last time. We would wait up after everyone else had gone to bed. It would be the night before my birthday: always the first night of snow. We’d step outside, smell the snow in the air. We’d set off up the back, the dogs at our heels, eager for a midnight walk. As we’d set off it would begin to snow. I’d support Grandpa on our way up, but he would find the strength for a last walk. As we’d clime we’d pause to look out over the valley. The twinkling lights of Wern Pennant down below. We’re walking away from civilisation, out into the Berwyns. The snow picks up, and as we get higher the temperature drops. The snow reflects the light, so it’s easy walking. I’d help Grandpa up the last slope, perhaps take him on my back. When we get to the top of Cadair Bronwen we’d sit with our backs against the cairn and take in the views. There would be snow covering the world, making everything soft. I would kiss Grandpa on the cheek. Then turn to go back, leaving Grandpa sitting against the cairn. The dogs would hesitate for a second, then turn to go home, understanding what we came here for. As a snow storm picks up, I’d look back one last time. I’d already barely see Grandpa sitting there, looking out over his favourite place in the world.

That’s what he really would’ve wanted. I wish I could’ve done that for him. His other alternative was “you could just push my chair into the Spey”.

23

Jesus Christ. I’m crying. With happiness, I think.

gracer, write more.

24

I am going to go ahead and agree with this, wholeheartedly. My parents retired to the pacific northwest, but as their circle of friends started dying off and moving away, they decided to move to a warmer climate - Florida. They spend a few years there and hated it - especially mom, who knew no one and was going thru cancer treatments. Finally, perhaps they saw the end coming for mom, and decided to relocate again nearby me and my family. Mom was happy to see me and the grandkids a few more times, but she was in very poor health by that point, and about 3 months later she was gone. She was miserable that she was not able to be near familiar places and faces. She complained to me about not knowing anyone or anything about the place she was living. Dad decided to take her ashes to the last place they lived happy lives - the pacific northwest, near the town they lived, and we scattered her in the water there.

Dad lived as I described in my above post, on his own, and did the best he could. As his health started to decline over the next three years, he would confide in me his regrets about moving around during his lifetime - about every 5-8 years. He regretted ever leaving what he considered his, and our family’s “homeland” of Long Island, NY. But it was too late to go home. After he was gone, it fell to me to decide what to do. And I decided to take him to where mom is, and I put his ashes in the same place, so they would be together there again.

I think it is important to let someone have some control over something like their location, even if they acknowledge that they need help, and may need to move into a place where help is more available. It’s a good point to let him stay local if at all possible - he will be happier.

For me, having mom and/or dad move in with us was not an option, as it would have destroyed my marriage and family. I was fortunate that they had enough resources to take care of themselves all the way to their end.

25

My Dad hated nursing homes, & moved back into an investment condo in the building I live in.
I helped a lot.

If you go this route, beware of your loved one lying to you.
About eat, cleaning, & taking his/her meds.

26

You mean lying on purpose? Not forgetting?

27

Skald, I’m still worried about the chance of fire until you and your family have made different arrangements for your father. Something similar to this happened with my grandmother when I was a kid. Immediately afterward (this was decades ago), she was moved by her children into a nursing home. (That’s what we called it then. I’m not sure what it would be called now.) :frowning:

28

Oh, yes. If the goal is to avoid doctors, avoid new (or any) pills and treatments, avoid tests with needles and uncomfortable scans, and avoid being moved into a skilled nursing facility, a lot of old people will lie. Lie like a silverback grizzly bear rug.

29

You bet.

30

That’s sad, and tough to deal with I imagine.

With Grandpa he would misrepresent the situation with doctors, but that was generational I think: not allowed to complain. And of course I would come in, say "Have you taken your pills?, he would say yes I look at pillbox, sigh “no, you haven’t taken your pills Grandpa”.

The only thing he would try to lie about was sneaking down the steps to the wine cellar. “Grandpa, where did you get this Margaux '85 from?” - “Ooh, I uhm…asked your grandmother to get it for me…” - Yeah, right Grandpa :dubious:

31

Does he have a microwave and toaster oven? For right now you could just unplug the stove; hopefully it’s too heavy or awkward to pull out and replug.

32

Or if the goal is to deny reality…

We were lied to by my in-laws when my MIL was getting sicker and sicker. She forbade FIL from telling us how badly she was doing. Turned out she has multiple myeloma.

We were lied to - REPEATEDLY - about their finances.

33

"Crap. The fucking stove is BROKEN. Won’t work at all!! ".

Just sayin’…

(that said, some cookware should be dried by heating on the stove, specifically cast iron and carbon steel; those will rust if not dried thoroughly).

Do you think this might have served as a wakeup call for your father?

34

I have some experience with this - my mother has Alzehimer’s and is now in a long-term care facility since the diseased progressed so far that my father could no longer care for her in their house (long story - essentially the disease caused her take out all of her frustrations on my dad and she would not let him care for her anymore).

My MIL has moderate dementia and is getting steadily worse. My FIL realizes this but his solution is to go to the casino every day to get some time away from his wife. My husband and his brothers and sisters have tried talking to their dad about care for my MIL, but FIL insists that everything is fine. We are concerned that they are going to run out of money soon because they eat out all the time (they can no longer cook) and because of the casino trips. There is no family around to help out on a daily basis. I’ve come to the conclusion that there is nothing we can do right now, but to be prepared for a crisis.

I have two elementary school-age kids, and it is so much harder dealing with elderly parents than with kids. With kids, you are the authority figure. You tell them what to do and they do it (well, most of the time anyway!) With parents, they don’t see you as an authority figure, so you can’t just tell them what to do. You have to try to convince them, even when they might not be able to understand and make rational decisions. With my mom & dad, things got really bad because my father kept trying to go along with what she wanted (example: she didn’t want to go see a doctor) instead of what she needed.

It’s really hard to figure out what is the right course of action, especially if the parent opposes what you think is the right thing to do. Skald, I would recommend getting in touch with the Elder Care services in your area and getting some advice on how to possibly keep your dad safe in his home. If you and the family can swing enough in-home care to keep him safe, that could be a good solution. Right before my mom went into long-term care, she had 24/7 in-home care and the caregivers were amazing.

35

My inlaws went through this with my husband’s grandmother. She was completely unable to care for herself, a small scratch on her leg turned into a several month long ordeal with visiting nurses and trips to the ER just because she didn’t take care of it. She absolutely refused to leave the apartment she had lived in for 30 years with her husband.

She couldn’t get out of the apartment because there was a long flight of external stairs and she couldn’t make the walk down or up them by herself. It was horrendous, made worse by the fact that she lived in Montreal and the rest of the family was in Toronto or points west.

The entire family tried everything but what finally saved her life was her landlord dying. His sons were selling the house so she’d have to move and she finally was willing to consider a nursing home near my inlaws. They had already sold their place in BC and moved back to Ontario so they wouldn’t be so far away.

The moral is, you can’t make him do anything and most agencies have their hands tied the same way. Whatever idea you come up with he’s got to agree or it’s going to be 10x as hard so put on your salesman hat.

36

Only thing is, what if he calls an appliance repair service?

37

I’m again in agreement with Mama Zappa. Both my parents with-held information about their health from me; I do not think they were lying. I think they did not want me to worry. I never really had a clear picture of what was going on until I attended a few doctor visits with my mom, and then my dad. I was asked what prescriptions he was taking by his doctor (queue deer-in headlights look). When I finally had the list, I had no idea he was on so many meds, for so many conditions.

Skald, there are some good bits of advice so far in this thread. What are your thoughts for your situation? Does any of this advice help you?

38

When my mother became too weak and half-blind to live on her own (a combination of cancer and chemotherapy) I stayed in her apartment as her live-in caretaker for the last year+ of her life just generally taking care of her. Helping her to and from the bathroom when she needed it, shopping for her & cooking her meals and so forth (my brother helped with the money at the time so I could do this). I slept on the couch across from her bedroom door so she could easily wake me up if she needed help. This continued until she started bleeding internally one day and died.

39

I’m lucky enough to have my mother living with me and she is well enough to get along with just a little supervision and help; my husband and kids have been incredible about providing this when I can’t be there. But I worry about the future, and I feel for everyone who has to find a way to keep an elder with dementia out of a nursing home and safe.

40

Well, I probably would never have shared this to start with, but I had to submit a first person narrative for rhetoric class, and found it to be somewhat cathartic. So I share again.

Decisions
When I type dementia into an online dictionary, I am told that it is “a state of serious emotional and mental deterioration, of organic or functional origin”. True enough for an outsider, but I have a much more personal definition. Dementia is a monster. It wraps a loved one in binding shrouds that allows only glimpses of its victim. Then it turns on those who care. It slashes with painful talons, infecting us with fear and doubt. Then it chases us into claustrophobic corners and forces decisions. And, decisions must be lived with.
Decisions can be simple, or they can cause guilt and resentment. Our mother’s dementia had been an increasing worry for some time. My brother lived in the home with her and I lived across the street, delaying the requirement for decisions. Two years ago, hiring someone to sit with mother while my brother was at work was an easy decision for us, and mother’s protests were slight. But, as the New Year approached, we knew that a new decision loomed. Her deteriorating sleep patterns raised concern of what she might do while my brother was sleeping. And, the episodes of mother believing she was not home and not recognizing us were becoming more frequent and taking longer to subside.
Misplaced thoughts are sad, but people act on what they believe. Sans episode, this frail octogenarian was exhausted by the trip from bed to kitchen table. But, frustration and agitation begets adrenaline, and she could spend hours trying to escape the home that had become her prison. For a while, allowing a supervised “escape” into the yard or driving her a few miles to deliver her back home would satisfy her. Then, one day in February, it did not.
The better part of that day had been spent trying to bring her back from an event of delusion. She was sitting in the car, refusing to get out. “This is not my home”, “Tommy (not my name), tell that man to go away (referring to my brother)”, “I need to leave this place”, etc. It was dusk. My brother and I were at wit’s end. The only thing I knew to do was drive her to the hospital for professional help, even though the voice in my head said “this is going to require a terrible decision”.
In the emergency room, the doctors made it clear that there was nothing that could be done for the dementia, and that a “care facility” was probably in her best interest, given our situation. We were aware of both facts, but the mind turns away unpleasant truths for as long as possible. Mother had a brief spell of lucidity while in that room; and I had to witness sadness overwhelm her when she realized that a decision had been made. I think now that it broke something inside her, because her condition deteriorated rapidly. Less than two months after entering the nursing home, mother passed away on April 4th. And I must live with the decision.