36Hour Day... Dad wont accept help with Mom...audible Eye Rolls and more fun in the life of Alz.

LMSnOH

I am Lisa. I am 54, so not too wet behind the ears, but needing to vent, question, commiserate, seek help and all the other mundane needs of a caregiver to an Alz LO. My mom is turning 78 this year. My dad is 80. They will have been married 59 years in March. They have never dated others, have never lived apart, have never lived in another home than the one they just celebrated 50 years in. They built the house, literally, from the ground up, in what was a cornfield. Across the street is the original highschool my mom attended many moons ago. I recently found out that she wants to live there. Keep in mind, the rooms have been turned into study halls and offices for the most part, and the kids can get to be a bit much, but she can stay in her part of the house until the kids leave and then relax. She doesnt like how much the backyard has changed... but, adding 2 softball fields, a fieldhouse, an entirely new (large) white school building--those would make most backyards look a little different over the years. Mom has spent 50 years looking at that 'house' so it no longer makes me wonder why she thinks she lives there. Perhaps when we go to that house, and look across the street, she will recognize her 'other' house. Thats the one Dad lives in. He is her jailer. She hates him most of the time, because he wont let her talk to people and talks about her with my sister behind her back, or ignores her when they are around the table. I thought her calling my dad a Putz was going to bother him.. nope, he views it as a term of endearment, based on a movie they watched a few years ago. I didnt tell him that she added the F-bomb before the word Putz. Somethings Dad does NOT need to know. I have tried to get him to read the book The 36Hour Day. I cried when I read the book, because 'mom' was in the very first few pages, and by the end, she was everyone and Dad was everyone and I was sobbhing, realizing what life has been like, is like, and will be like for my parents. Mom hates to hear dad make his heavy SIGH... usually right after she does something different from what she said she wanted to do or started to do. She'll turn on him in a flash, and mention that he may not like her actions but keep his opinion to himself. I tell him he makes an audible eyeroll and he needs to stop. Mom smiles and laughs a lot when we are together--I work hard each visit to make things seem silly or remind her/dad of things from my childhood. It isnt hard to remember stuff, as that house is the only one I know, and the school across the street--sorry, the house--was my middle school. But to hear my dad say during one of my visits, that he has seen mom smile and laugh more in the past 2 hours than in the past 2 months... How do you support your parent(s)? How do you help them find themselves when their partner of nearly 60 years cant think of the words to say, doesnt solve puzzles or read books anymore. When she is more childlike than her grandchildren on occasion. And then there's dad. He doesnt golf anymore. He never had hobbies other than that, and he and mom always did things together. He has left her with me twice in the past four months. He feels he is responsible for her and needs to be there for her. How do you get your caregiving parent to go out and DO things?

Fairyland

Hi Lisa, 

Just came to say hi.  I don’t have another parent anymore to deal with, and haven’t yet read the 36 hour day but I have read a lot, and after going through months of dreading all the inevitable catastrophes, I realised that ALL of the bad things are not necessarily going to happen in the future. Some will and some won’t and no one has a crystal ball. You really only have to deal with now, only, and save tomorrow for when you can manage that. If I do read it, I will pick and choose the needed sections, not treat it as a personal timeline.

I have moved in for nearly a year with my mom, and though she is less advanced, and I am in my late 50s and healthy, I am lately too shattered to do much extra. It’s mental even more than physical exhaustion. Maybe your dad feels that way too? If someone baby sat my mom, which no one has ever offered or thought of, so you are very cool!, I would probably do some “fun” chores like throw out some of her junk or expired cans behind her back, working out how to hide it so she doesn’t get it back out of the garbage, then have a nap. 

Another thing to be aware of is showtiming or hostess mode. When the PWD get to see someone who is NOT the caretaker, like favourite relative or doctor, they often perk up and smile etc. a lot for a while.  This is nice to see even for the caretaker, except for the fact that it makes the caretaker look incompetent, a liar or worse. If you stay 24/7 for a while, you may see a different picture.

I’m sure better people than me will come along to be helpful, but welcome, and sorry about that, to here.

dayn2nite2

Your father is probably exhausted, but if he doesn't want help you will probably have to wait for the inevitable emergency to get some help for him.

Please ask him where their legal documents are and find out whether you are listed as a secondary POA on any - because he may have a medical emergency and you'll need to know where these documents are.  If they don't have them, make an appointment for both to see an attorney to get those documents done.  That would be the most immediate help they need.

I found the 36-hour Day far milder than the reality of dealing with someone with dementia.  Like a sanitized version.

harshedbuzz

LMSnOH wrote:

I am Lisa. I am 54, so not too wet behind the ears, but needing to vent, question, commiserate, seek help and all the other mundane needs of a caregiver to an Alz LO. My mom is turning 78 this year. My dad is 80. They will have been married 59 years in March. They have never dated others, have never lived apart, have never lived in another home than the one they just celebrated 50 years in. They built the house, literally, from the ground up, in what was a cornfield.

Hi.

Vent away.

I can appreciate your concern about dad as a caregiver if only based on his age. I mean, would anyone in their right mind hire an 80 year old for the position of sole, 24/7 caregiver?

Across the street is the original highschool my mom attended many moons ago. I recently found out that she wants to live there. Keep in mind, the rooms have been turned into study halls and offices for the most part, and the kids can get to be a bit much, but she can stay in her part of the house until the kids leave and then relax. She doesnt like how much the backyard has changed... but, adding 2 softball fields, a fieldhouse, an entirely new (large) white school building--those would make most backyards look a little different over the years. Mom has spent 50 years looking at that 'house' so it no longer makes me wonder why she thinks she lives there. Perhaps when we go to that house, and look across the street, she will recognize her 'other' house. Thats the one Dad lives in.

Many PWD get confused about "home". Sometimes my dad believed he had multiple houses in his neighborhood and that woke up in one, had breakfast in another, dinner in a third and so on. Sometimes he believed he owned properties in states he'd never been to. For other PWD who want to "go home", home is more a sense of security and things as they used to be rather than a physical place. I wonder if your mom's confusion is a bit of the latter- wanting to be as she used to be. If she's one who recognize herself as elderly and impaired, she may feel school is where she should be. 

He is her jailer. She hates him most of the time, because he wont let her talk to people and talks about her with my sister behind her back, or ignores her when they are around the table. I thought her calling my dad a Putz was going to bother him.. nope, he views it as a term of endearment, based on a movie they watched a few years ago. I didnt tell him that she added the F-bomb before the word Putz. Somethings Dad does NOT need to know.

Are her accusations true? Does he not allow her to talk to others when she's out and about? Does he vent to family about her when she's in earshot? I wonder if getting her out into a day program and him into an IRL support group would be useful. 

I have tried to get him to read the book The 36Hour Day. I cried when I read the book, because 'mom' was in the very first few pages, and by the end, she was everyone and Dad was everyone and I was sobbhing, realizing what life has been like, is like, and will be like for my parents.

I hear it's a great book, but when you are in the thick of it, who has time to read? Plus, your dad might feel as though he already knows what's in the book. If it's the former, perhaps he'd be more open to this piece which is shorter- and free.

12 pt Understanding the Dementia Experience (dementiacarestrategies.com)

Mom hates to hear dad make his heavy SIGH... usually right after she does something different from what she said she wanted to do or started to do. She'll turn on him in a flash, and mention that he may not like her actions but keep his opinion to himself. I tell him he makes an audible eyeroll and he needs to stop.

Alas, emotional intelligence remains well into the progression of the disease. Your mom is able to parse his annoyance with her behaviors. But telling him to stop- coming from you- may not be the kindest approach either. I found my mom resisted my suggestions around caregiving because I didn't have any skin in the hands-on game. She did take to heart the very same suggestions when made by the men and women at her support group who were caring for their spouses.

Mom smiles and laughs a lot when we are together--I work hard each visit to make things seem silly or remind her/dad of things from my childhood. It isnt hard to remember stuff, as that house is the only one I know, and the school across the street--sorry, the house--was my middle school. But to hear my dad say during one of my visits, that he has seen mom smile and laugh more in the past 2 hours than in the past 2 months...

Fairyland's explanation of showtiming/hostess mode is the likely scenario here. Plus, it's pretty easy to be the be the perfect caregiver when you only do it for 2 hours a few times a week on a full night's sleep in your 50s. Another piece is that sometimes a PWD reserves their worst behavior for the one closest to them- much like a toddler does. My own dad was a beast for my mom but much better behaved for me- and it wasn't because we had some sort of deep connection- we never got along and I was never his favorite. 

Is there any way you could commit to a full day weekly so dad could go out and have a real break? 

How do you support your parent(s)?

I managed the logistics for my mom which freed her up to just focus on dad's care. I took dad to most of his doctor appointments to allow her some free time. I visited about 4 times a week and spent hours listening to her vent. I found her a psychiatrist, therapist and support group. I crafted a Plan B in case I needed to take over his care because of her death or disability. And I advocated for her needs whenever a doctor started to put dad's foremost. 

How do you help them find themselves when their partner of nearly 60 years cant think of the words to say, doesnt solve puzzles or read books anymore. When she is more childlike than her grandchildren on occasion.

You provide him with support and companionship. Give him a real break he can look forward to weekly. Validate what he's going through. And give him permission for placement if that would be best. 

And then there's dad. He doesnt golf anymore. He never had hobbies other than that, and he and mom always did things together.

He must really miss the old her. I wonder if you could interest him in 9 holes of golf or even just hitting the driving range.

He has left her with me twice in the past four months. He feels he is responsible for her and needs to be there for her. How do you get your caregiving parent to go out and DO things?

One strategy that worked for me was to ask my mom what her plan was for a time when she could no longer provide care- if she were sick or died first. I needed to be looped in in order to provide the kind of care she would want for dad. It also helped to remind her that while I had accepted the loss of one parent to dementia, I wasn't going to sacrifice the other as well. YMMV. 

Good luck.

HB

MN Chickadee

I'm wondering if your mom is stage 5 on the Tam Cummings stages? We have discussed here before how stage 5 can be the hardest one, filled with suspicion, unhappiness, edginess, complaining. Having one foot in pre-dementia life and one in the next phase of not knowing what is going on. If that is the case it will pass. It will take time but she will move on from it. It's hard, I know. Happiness can be very elusive for the PWD. Usually wanting to go home is not a place, it is a feeling, a sensation, a feeling of comfort, wanting their parents wanting things to make sense again. Often even if we take the person to the place they think is home or a childhood home that's not home either. Just go along with what she says, don't try to reason with her or convince her. Smile and nod, validate feelings, ask what she misses about home. Say whatever brings comfort. 

 Do you and your family have a plan for what comes next? When it's too much for dad (incontinence, wandering, and being awake at night are just about guaranteed and are often what does a caregiver in.) I'm sure your dad is exhausted. My parents were in a similar situation, with dad as the primary caregiver and they had been married more than 50 years. There was a fair amount of denial for a while about mom's condition, and it took him a while to face reality. There is a level of grief that happens. Grief for what his wife is becoming, for their relationship, for all that is being lost. My dad didn't want to do things either. As much as I thought he should he had to handle this in his own way, and his sadness and grief came out in just not wanting to go out and live his life. After my mother moved to memory care facility due to the aforementioned care needs making it necessary he slowly started to rebound and get out in the world again but it took a good year after she moved. Your dad will have to do things at his own pace. Keep offering to give him some respite by entertaining mom so he can have a break. Make inroads and gently nudge where you can. Are their legal documents in order like POA?