Dealing with Dad (dementia is a b*tch, advice welcome)

In My Humble Opinion
41

I’m living with my mother, who has a form of Dementia (actually the effect of NPH), she hallucinates and thinks that the TV is people actually in the living room, and photos in newspapers/magazines are guests in the house.

Sometimes it’s funny, most of the time it’s not, especially when she starts wanting me to cater meals for these people, and gets all Holy Mary on my ass and tells me I’m going to burn in hell for all eternity and my grandmother will be turning in her grave in horror and other assorted threats and hysteria. Sometimes she thinks that someone is running a brothel in the basement (we don’t have a basement) due to the number of photos of women in the papers/magazines.

She demands that I let her walk into town - she can’t walk properly, she shuffles and she falls. If I try to explain she gets pissed off at me for trying to keep her in jail, threatens to call the Gardaí, or my psycho brother, about it.

She never knows what day of the week it is and generally thinks it’s Thursday or Sunday. She gets very angry if I correct her.

I have to be very careful what she watches on TV, we used to be able to watch cookery programmes, home makeover shows and soaps. Not any more. Mostly she watches the sports channels. She will tolerate Mythbusters, and American Pickers.

I can only leave her alone to go shopping - if I leave her alone while I go to the toilet, or to do some chores - she gets hysterical.

She’s stopped it now, but a few years ago she’d tell people she hadn’t seen me all day as I was in the pub. People believed her.

I don’t drink.

I have a problem with my jaw on account of my grinding my teeth and/or clenching my jaw. I have other assorted aches and pains in my shoulders, elbows and back from having to pick her up when she falls, or helping her to get around the house.

I had a nurse (who thank frank retired) who was as much use as a chocolate teapot. I should have had Daycare [for mother] 12 weeks Respite per year and a Home Help some hours a week. I had nothing until about 18 months ago when a new nurse arrived on the scene and was horrified that I was trying to cope with my mother on my own.

She now goes to Daycare once a week (after a fight), and Respite every 6 weeks (again only after a major fight), I don’t get a Home Help though as the gubment cutbacks mean you can’t have a Home Help unless you are completely incapacitated - which she isn’t.

I’d love to be able to put her in full time residential care, but the law here is that you ask the person and if they say “no”, then they don’t go.
I’m available for exchange of war stories/advice any time you need!

42

My mother has Alzheimer’s, and she’s in a facility. On occasion there are guilty feelings about it (she is constantly asking when she can go home), but it’s the best for everyone and we get reminders of that on occasion.

I attribute a lot of the dementia meanness to frustration - when my mother is with it she knows she’s got the disease and knows she can’t be independent any more, and like you said, the residual frustration and anger carries over to when she’s not with it (and adds a big heap of paranoia). But the funny thing is because of the way she was brought up she’s sweetness and light to everyone but family. If she lived with any of us all of our lives would be a living hell of anger and frustration, but living in a facility where she’s nice to the staff she can be a lot calmer and relaxed (until we come to visit, then she lays into us).

43

Devil’s Grandmother and Cat Whisperer, you have, I think, hit on the crux of the issue with my mom. She is overworked, chronically short on sleep, and her own health is at risk (she’s non-insulin dependent diabetic). Her sister has really pushed for a nursing home, and Mom has really resisted it. I’ve brought up several times that I think Dad is showing signs of clinical depression (I should know), and that dementia or no dementia, it should be treated. She’s resisting that.

She is overwhelmed. She wants my brothers and I to be protected (which is impossible), and she’s determined to make all the decisions (which is highly improbable). She is terrified of spending the last chunk of her life poor.

We are going to go to the next available support meeting, but we just missed out the big cluster of monthly ones. She’s too tired to go to church on the Sundays she doesn’t work. I guess I need to see if there are any late or evening services. She always works Wednesdays, so mid week doesn’t work. She worries about me having a support network, and she has nothing at all. sigh

The loss of the wallet is a huge, huge obstacle. Everything was in there - his driver’s license, his military ID, his Medicare and Social Security cards, the credit card, and probably every membership or ID card from everything he’s done in the last ten years. To top it off, we can’t find his birth certificate. The credit card doesn’t matter. There haven’t been any charges to it. At first, we thought he’d dropped it or hid it. Now, I think someone picked it up, took the cash, and threw it away.

To get any of the cards replaced, we have to have a picture ID of his. The only ID we can replace without another picture ID is his military ID, because - thank Og, I love the military - he’s in the system with a picture. But we do need his birth certificate and discharge papers. The latter we have, the former we don’t. So, I’ve had to order them over the Internet, as there’s no walking into the county office of vital statistics in Oklahoma. It’ll take at least five more days to get the birth certificates (multiple copies this time). Then we can get the military ID, then replace the others. He doesn’t get a driver’s license again, but the state can issue him and ID card. Not that he’ll go into a DMV office willingly.

In the meantime, Mom’s gotten a letter from the doctor declaring Dad incompetent to make financial or health decisions. That’s a big deal. It means she can change the bank accounts to protect them. It means she can take over making decisions for his treatment.

Me? I’m the first person Dad lashes out at and the last one he smiles at. When bro came upstairs to tell me he was taking Dad to lunch, Dad yelled “SHE’S NOT INVITED!”. I understand it’s the disease. It doesn’t make it any easier.

Corcaigh, one thing we’ve learned over the last week: do not argue with the insane person. Mom wants to cater lunch for the voices, you say “Oh, okay, Mom. I’ll take care of that.” Mom wants to walk to town, you say “Sure, Mom, but can you hang on a second while I finish this chore?” Mom says it’s Thursday, you say “sure is, Mom.” When my dad is actually speaking to me, it’s the only way there can be a conversation.

So, I’m off to find out how to replace the Social Security and Medicare cards.

44

Mr. S, who works as a nursing assistant on the locked dementia unit at our nearest state veterans’ home, says absolutely the VA is your friend. Your father’s behaviors are something he and his colleagues handle on a daily basis.

You sure didn’t need the extra obstacle of the lost wallet, but we’re 42nd-ing the advice to find out how the VA (state or fed) can help you. He’s earned that benefit.

Best wishes.

45

You have my sympathies. Two years ago my husband and I moved his mildly demented mother from her home two states away to a nursing home near us. We dealt with a lot of the same issues, including family members who weren’t really ready to face the situation. When it looked like we might have to qualify her for Medicaid, the nursing home recommended a wonderful agency to help us get things in order. Not lawyers, but a group of social workers specializing in eldercare issues. They weren’t cheap but they weren’t as expensive as lawyers for handling the smaller stuff and their suggestions and advice were invaluable and saved us time, trouble, and money. (Save the lawyers for when/if you really need them). Maybe the Alzheimer’s association in your area could suggest something similar? Hang in there.

46

Another encouragement to “hang in there, phouka.”

I had a long post prepared, but it digressed into the problems my sister and I faced with our own Dad developing dementia. You don’t need to hear about those; you face many of the same problems anyway. So let me just say that I hope that the VA or other agencies can offer some help. Certainly, explore them as you can.

Our Dad is now in a nursing home, and while it was a struggle to get him there, it offers great peace of mind. Dad is not wandering away from home any more, he’s not flagging cabs to meet imaginary people at places where no meeting was scheduled anyway. He is not eating frozen dinners and canned soup and crackers, which is all he could remember how to prepare. He is not inviting strangers into his house, just to have somebody to talk to. No, now, he is eating healthily. He still fusses and wonders when he is going home, but he is safe. And apparently, he loves to talk with the female nurses and aides, who find him to be a pleasant, if somewhat flirtatious, gentleman. In short, he is in the best place he could be, given his condition; and Sis and I are breathing sighs of relief.

Again, hang in there, phouka. Things may get difficult before they get better, but they will get better.

47

That was heart-breaking with Jim’s grandpa - he had no short-term memory at all, and he kept asking us where he was, and when he could go home (when he was in his room at the nursing home). He wasn’t angry or anything, just so bewildered. “No, Grandpa, you live here now.” “I do? What am I doing here?” There just wasn’t anything we could do for him, except tell him over and over again and re-assure him.

48

That sort of thing doesn’t work with my mother, if I pretend to get some food for her guests, she wants to see the food. I tried pretending they’d gone to a restaurant, she refused to believe me. I pretended I’d gone for takeaway, she wanted to see the boxes the food comes in… she won’t accept anything I tell her.

One time she wanted me to take someone to the hospital because she thought this guy (photo in paper of a man with his arms folded, grim expression on his face) had broken his arm. She put her coat and shoes on and was screaming her head off at me because I wouldn’t take them to the hospital! I threw the paper away and told her he’d gone in an ambulance, she nearly split my head open for not going with him. I just can’t win!

49

Damn, Coraigh, that’s awful. The cardinal rule we have right now is that if Dad becomes physically violent, we call the police. It’s the dementia, but we didn’t sign on for abuse. The police are paid to deal with it. Dad responds very well to them the couple of times we’ve called.

Yesterday was a rough day. Dad refuses to talk to me and will not stay in the same room when I enter. Once Mom got home, he came up and announced that he would be leaving today to go live on my brother-in-law’s boat. With no cash, no ID, no ATM card, no credit card, and no checkbook. Not to mention the fact that the boat is only used for excursions and isn’t equipped for someone to stay there.

After that, Mom agreed that placement would be best. This morning, she’s backing off of that, worried about the cost and ignoring how many times I’ve said that Dad is eligible for VA benefits, which include nursing home care. Everything is compared to what happened to her sister, who was practically a worst-case scenario with Alzheimer’s, diabetes, morbid obesity in a nursing home, completely non-responsive to care, and it took a protracted fight with the nursing home to discontinue treatment and let nature take its course. She was in a nearly vegetative state for years.

Considering how quickly Dad’s dementia has progressed in the past two weeks - from manageable to completely unpredictable and hostile - I am beginning to believe that he’s not going to see another birthday.

I’m also finding myself looking ahead rather desperately. I can’t take care of him anymore, so I might as well go find a full-time job doing something. Anything. When we finally place him, hey, I can have a bedroom to myself again, I’ll be able to start practicing on the piano, I can finally start fixing things around the house and maybe even fixing them up. All of these have been impossible because Dad would get upset. It’s not that I want him gone. It’s that he is gone, and the body that’s still here, in his place, is becoming impossible to live with.

sigh

Time for me to go get him some lunch and run errands.

50

That’s a totally understandable attitude, phouka. Made perfect sense to me, anyway. Good luck with it all.

51

I swear the people who make these rules have never cared for an aging relative with dementia. Harsh as it sounds, caring for sweetie’s mom got easier after she lost her ability to walk (which was tenuous before that; she was hemiplegic from a long-ago stroke). Before that, there was the risk she’d fall, that she’d wander over and turn on the stove for no reason, that she’d dump stuff in the toilet and flush it till she flooded most of the upstairs before we caught her (she did this one. Twice.) After she was confined to a wheelchair, none of those things were a concern.

It’s a hard thing to deal with, that your life has gotten better - because your loved one has gotten worse.

52

That’s exactly what’s on my mind, Jenaroph. I can’t spend time downstairs, because Dad can’t stand having me around. I’ve spent the last three years making sure he eats, takes his medicines, recording his blood pressure, taking him to the ER when he has a crisis, going without a social life, giving up on keeping a career of any sort, and being constantly broke and financially dependent on my parents because I don’t work.

And it’s all been worth it. Up until this last week. Now, it’s not even about my relationship with my dad anymore. My dad doesn’t really exist. It’s that the ruin that is left of him is outside any effort of mine to help, to make a difference. I can’t help. I can’t make anything better. It looks like nothing is going to help him or make him better.

So, if it’s going to be that way, why can’t we put him in the care of professionals who will treat him with compassion and dignity? We will still do everything necessary to protect him, to ensure his care, to make him comfortable and as happy as possible. But we’re coming to the end of a phase - a hell of a lot faster and more horribly than I’d have ever predicted, but still - and I want my life back.

53

I wish you the best of luck.

Both of my parents have dementia. They refuse to leave their home for a safer place, but their doctor wants them out of there — which may very well require a guardianship, which I cannot assume because the state they live in requires the guardian to live in the same state. They have no other relatives in the state who can assume this duty. This means we’ll probably have to spend a good bit of their assets on an appointed guardian, plus taking them to court, etc. Yeah, this is going to be lots of fun …

54

I haven’t resorted to calling the emergency services (999 as it is here in Ireland), I’ve been very tempted to! Fortunately she’s never gotten violent, she has yelled at me to get out of the house and I’ve replied, “I’ll take you up to the Home first” which instantly shuts her up!

There is a state run Home here that was for years called the County Home and it was the dreaded place that all the elderly feared having to go into. And once upon a time it was a dire place, but it’s been renovated considerably in the last 10-15 years and has proper dementia care wards etc. My mother goes in there for Respite every 6 weeks, so she’s seen that it’s not some Victorian workhouse of horror. But I’m happy to let her think it is!

Don’t beat yourself up about it, you do the best you can in the circumstances, sadly society doesn’t give a flying rat’s arse about people who are caring for someone “oh god must think you’re a very special person” and “oh that’s a very rewarding thing to be doing” etc. so you have to struggle on as best you can.

My father went more or less blind, as well as having a type of Dementia (not Alzheimer’s) before he passed away - he was ‘easy’ to deal with, he slept most of the time, and when he was awake he thought he was in a WWII hospital having been shot in the leg, so it was no bother keeping him placated pretending that yes, he was in a WWII hospital having been shot.

True dat. There’s a politician in Ireland who is Carer to a ‘special needs’ adult son, and she’s fought to have Carers recognised as part of the workforce and be treated as a state employee with proper wages and working conditions (currently you get a social welfare payment with ‘extras’ - but you only get those if you pursue them down long dark winding corridors)

I have an awful feeling that she became embroiled in some scandal or other and has lost her [political] seat and we’ve lost our best advocate :frowning:

Yup, like my father, his care became much easier when he was bedridden and too addlepated to know he was practically blind and ‘gone in the head’ :frowning:

It’s the extreme cruelty of dementia that the person you used to know becomes a completely different person - my father mellowed out somewhat, my mother was always an ‘aul waggon’ but these days she amuses herself talking to her ‘guests’ instead of roaring and bawling at me every five minutes.

Society seems to believe that caring for the elderly (or anyone who needs full time care) is a sacred duty of the family, and they need no assistance or consideration given to their situation whatsoever other than the occasional (highly insulting) platitude as mentioned above. I swear people think all you need to do is sit the oldster down, put a cup of tea in one hand, the TV remote in the other and leave them sit there all day! The reality is somewhat different. Bed sores, incontinence, violent behaviour, in some cases sexual assault, the danger of the [elder] person causing injury to themselves if they start wandering, or try to cook or light a fire (I lock the kitchen door at all times!)

sigh

You have my sympathies RP, that is not an easy road to walk.

55

Watching your parents fall victim to dementia is terrible. It is hard to deal with the role reversal. It is hard to be authoritative with your parents. A part of us is angry or frustrated and another is sad. I’m truly sorry to hear about what you are going through. I have been there with my mother. She is in a home, and I am carrying less burden but I can’t say it gets easier. I’d like to share these books on elderly care. Coping With Your Difficult Older Parent: A Guide for Stressed-Out Children was helpful for me. I was having a difficult time coping with the changes and pain. This book helped me to relax a little and offered a fresh perspective.

56 
   Sorry to hear from you about your dad. One of my friend's family is passed though this stages, at that stage they move to take the services of Mashomecare is well known for [nursing care plan for dementia patient](http://mashomecare.com/alzheimers-and-dementia-care2/get-prepared-with-a-dementia-care-plan/). Now there is no trouble in their family.

I hope all is well in your family too if you have any query then may also search about them.