Lack of independence

*Ollie*

How do you deal with you LO lack of independence?   My mom relies on us for everything and the only thing she will do on her own in watch tv (she lives with us).  She's open to do some things but everything must be initiated by me or my husband.  While I know that apathy is part of dementia, I still get so frustrated by this and find it exhausting.  Why is this so difficult for me?  I'm finding this the hardest part of taking care of her.

Iris L.

*Ollie* wrote:

 the only thing she will do on her own in watch tv .  

Perhaps you can rephrase it as "the only thing she CAN do on her own is watch tv".  

PWDs lose iniative.  Inertia is a part of dementia.  You or someone will have to start her off on an activity or sit alongside her in doing activities.  Have you considered adult day care?  There are activities on her level.  Too much TV can cause problems.

Iris

dayn2nite2

I think it's more than "apathy" - it is actually the inability to spontaneously engage in activity or conversation and that is definitely part of the disease.  At some point you have to accept that she just can't initiate anything herself and either assist or give up and let her watch TV all day.

I understand it's frustrating.  Perhaps going to a support group (either in-person or online) might help to cope with it or even possibly seeking some counseling to assist in coping?

GuitarGirlLaura

I'm going through this with my mom too. All she wants to do is watch TV all day. We hired a caregiver two days a week to do things with her but she's not liking it and is kinda mad at me. As I'm reading other's post here I know I need to realize that maybe that's all she CAN do...because of her dementia. It is exhausting. I took my mom to play Bingo at her senior center and it moved too fast for her. She didn't understand how to play it. I have to realize these things are not fun for her. It's very hard to watch and I get sad alot.   Hang in there. I feel for you!

​fesk

We were lucky that for many years the decline, while steady, was gradual. I always tried to let my mother continue to do as much as she possibly could. We modified activities along the way as needed.

There did come a time when she could not initiate an activity on her own, but she was still capable of many things. You just need to see what still interests her and what she can still do. 

Sometimes I think the frustration comes from watching our loved ones consistently lose ability. We want them to be the same, but they aren't - and it's not their fault.

GuitarGirlLaura, mentioned taking her mother out for Bingo which wasn't successful. I wonder though if she wouldn't enjoy playing Bingo at home at a slower pace. My mother enjoyed playing Bingo at home. Much easier without distraction and pressure.

Maybe you can get an aide to come a few times a week and try to engage your mom. She might enjoy the company and will take some pressure off you. Also, you may want to have your mom evaluated for depression. An antidepressant may be needed.

*Ollie*

Iris,  she is not interested in adult day centers, I've tried.   We do have someone who comes in for a few hours a week so beyond that, all of the interacting/care falls on my husband and I.  She's still pretty physically healthy so it's been difficult to find caregivers who are up for engaging with her.

*Ollie*

My post is more that I recognize she is how she is because of the disease and yet I still find myself feeling exhausted and frustrated.   I understand that I need to be the one to get the activities going and to do them with her but what I'm trying to express is that I don't want to!  It's exhausting.    I am reaching out to get some counseling for myself.  This is way, way more stressful than I realized.

Iris L.

Ollie, from what I've learned, when you are feeling exhausted and frustrated, you need respite.  You MUST have someone come in to give you a break!  I may have mislead you earlier.  By adult day care, I meant a care center specifically for PWDs.  They would have slow activities appropriate for your mom, even if it is sitting by a window watching birds.  I did not mean a regular senior center.

Nevertheless, if your mom is resistant to leaving the home, you must get someone in for your sake.  You are important!  Your needs are important! You must make the effort to attend to your needs.

Iris

harshedbuzz

*Ollie*

The difficulty you are having is dementia's unholy trinity of inertia, apathy and poor working memory that will prevent her from entertaining herself independently. She doesn't have the executive function piece to plan and initiate an activity for herself. She's probably lost the drive to entertain herself and she no longer has the working memory to hold a thought long enough to engage in more complex hobbies she might have had- sewing, knitting, gardening, puzzles.

At best, you might land on something she could do for a short time once you set her up with it. Pairing socks, puzzles, folding towels, sorting buttons or coins might occupy her for a time. I used to send my aunt adult coloring books (she was that doting aunt who would color with us for hours and always had a fresh box of Crayola 64s on hand) that had vintage womens fashions and landscapes from places she'd been. My friend's mom did a lot of puzzles when she could no longer knit-- they started with 500s and were down to 49s that last time I saw her. 

It would be great if you could find an aide who clicked. Unfortunately, most of the better HHAs want close to full time and someone who only needs 10-16 hours a week might have trouble getting and keeping a really talented person. If you're working with an agency, they seem to send "first available" to their newer clients. (We went through some duds (a thief who made off with some of mom's jewelry) and a couple lovely people whose accents made them impossible for dad to understand)

My friend lucked out on an agency aide because she offered 5- 6 hours shifts and there was an older HHA who liked that. This woman even spoke German with her mom. They went for walks, they puttered in the garden, did mom's laundry. They generally cooked or baked together most days.

When you tried adult day programs, were they more generalized senior center programs or was it something specifically geared towards PWD? If it was the former perhaps the latter would be a better fit given that the activities would be dementia-informed. Perhaps she'd respond to attending as a "volunteer".

And this. When dad's dementia was making me want to pull my hair out, I always revisited this piece as a reminder of the experience from his side. This allowed me to reframe so I could be empathetic and more effective in dealing with things.

understanding-the-dementia-experience.pdf (alzconnected.org)

The other piece is that dementia care requires a village at times. Not all PWD are easy and settled at home and not all spouses, adult children or siblings are capable of providing quality 24/7 care that would normally be provided by a team in a MCF. 

HB

May flowers

Ollie, I can relate to your feelings. The stage you describe was very hard on me too,. The inertia and trying to keep my FIL engaged  was exhausting. He either wanted to walk for hours on end, or sit, stare, and do nothing. He could not follow TV anymore either. I could not get him interested in anything. 

It was hard enough that I told DH we needed to get help, a caregiver, day care or memory care. He made the call to do memory care as he didn’t think my FIL would do well with caregivers - so that’s where he was from May of last year to January of this year. I was pleasantly surprised that FIL improved there - he didn’t necessarily participate in activities but there was always something going on and he enjoyed being part of the group looking on. He made friends - a coffee/meal buddy and a walking partner.

 Things went south - long story - and he is home now, immobile and in stage 7. His care now is not as exhausting because I am not having to follow him around the neighborhood for 5 hours or be hyper vigilant that he won’t run off, but it a different kind of hard and sad. I do have caregivers helping now, especially with cleaning and transfers, and he does not mind. He is in his own world most of the time now.

*Ollie*

Thanks for sharing your experiences and ideas.  It's much appreciated!

The adult day center was mostly PWD or other cognitive issues.  My mom does not see that she is incapacitated which made her set against going to this place.  Plus, the activities they were doing (cooking, crosswords, puzzles) none of those are interesting to her.  That's really the only one around me.  The local senior center is not appropriate for her as she is not independent enough to do their activities.   I haven't seen any memory care that is also day care.  Those places seem to be connected to live-in facilities.  

We would have help for longer hours but I honestly don't know what we'd have them do.  3 or 4 hours seems perfect.   My mom lives with us and so we take care of her laundry (which is minimal), medication, meals and all those kind of things.   And my husband works from home.  

Anyway, it's helpful to share and know that others have been in this spot.   We have recently decided to start looking for a memory care facility for my mom.  Now that's a transition that's going to be rough!  I'll be searching this site for how others have pulled it off.  

terei

I would try the adult daycare again.  Maybe frame it differently for her: “ This organization

called and really need your help there. “. Tell them what you have explained to her + have them give her a job to do(whether she does it or not) 

Honestly, you need to get out from under the pressure of her constant needs.   It’s not just about what she ‘wants’.    If she is not thrilled with the daycare, so what?    You needs are as important as hers.  It’s a hard concept for someone to accept sometimes.  As long as she is safe at daycare + not acting out about it, you need some time without her

​fesk

I can't get a good idea of where your mother is in her progression. You said the senior center wouldn't work because she couldn't do the activities independently. Would she be able to go with the aide? My mother attended a senior center for years with an aide and enjoyed the exercise classes, bingo (while she could), the socials and made some nice friends. It was also something for her to do with the aide. They got out every day, brought lunch there, etc. There was also a nice area to walk there which got my mom out in the sunlight and walking.

jfkoc

"I don'twant to". Understood. 

If your mother is content watching TV then so be it. Sit and watch with her a bit, ask her is she would like to help with dinner or something else. If she says no then let it be.

mommyandme (m&m)

I feel your pain! My mother isn’t physically challenging, except for making sure she’s clean and not getting pressure sores.  Mentally, I am often very sad and tired of caring for her.  I must get others in to sit with her or I dont make it.  The new realization that mom is home bound AND bed bound hits me where it hurts.  I don’t think I can even take her outside any longer.  It just feels so wrong…because…well it just is.  Trying to engage her is challenging.  Understanding her is worse although she does love to have deep talks about something, always has.  That’s one reason I know she’s still in there because of her “conversations”. I so wish I could understand her.  

Mom has just been watching TV for quite awhile.  I think we have every streaming platform possible along with many purchased shows/movies. I try to change it up for her and ask the help to change it up too although sometimes they don’t/won’t, not sure. The Love Boat has been a fun one recently.  She seems to like to see people in loving relationships . Mom will fidget with things. If she’s not fidgeting with a thing she’ll pick her skin til it bleeds.   Yesterday I gave her some of her necklaces and she messed with them almost all day.  Sometimes she’ll look at a book, usually the same page for a very long time.  She’ll accept being read to sometimes.  Some playing cards with only images on them went over well one day.  The next time I tried, nope.  Strings are a fave.  The fidget blankets, fail.  Button sorting and folding are a no go.  I think she might think of those as a chore and isn’t having any of that anymore.  Her stuffies are her fidget staple, she can talk to them, love them and pick at them to her heart’s content.   

It’s hit or miss daily, hourly… this is so hard and frustrating.  Ollie, you put into words exactly how Im feeling.  Thanks for sharing.  

GuitarGirlLaura, I completely understand. Been there now and always. I’m very sorry. Thanks for coming to this forum.  Keep coming back. 

Thanks to all of you wise and caring folks! 

*Ollie*

​fesk - My mom is between Stage 4 and 5.   Having someone go with her to a senior center is a great idea and one that I'll have her caregiver try with her.   

terei - Great point about not wanting to be under the pressure of her needs.  We need regular breaks for her being here and not getting them is taking its toll.   It kinda sneaks up on you, though.   There's a struggle within me as far as obligation to take care of her and how much space it's taking in my life.   I know I have needs but with her living with us, it's hard to keep that balance.  

jfkoc  - I wish I could accept her tv watching.  There's no way that can be good for her.  

(m&m) -  Who do you get to take over when you need a break?  Does your mom live with you?  I relate to you feeling sad and tired.   It's just tough and there are moments when it feels lighter, and then it's back to being tough.   I hope you find some relief and lightness.

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mommyandme (m&m)

Ollie, 

We moved mom to my state and into the house directly behind mine.  Technically we don’t live together but Im there most of the time and sleep there every night. We have hired help that comes in to give me respite.  I do all the dirty work though.   I’m lucky enough that I can leave her house and walk across our back yards to mine.  During the day hours when away from mom I’m usually taking care of my grandchild(ren) but babies are way more fun.  I understand them better and they are usually enthused about our activities.  Smaller diapers to change too. 

As far as TV watching, yes it feels wasteful at times, although I don’t feel it’s bad for her.  Boring…maybe?  She’s always enjoyed it.  When I was a child she’d make a special night of it for us with trays and TV dinners to watch a showing of one of the musicals like Wizard of Oz, Oklahoma, Sound of Music, holiday specials etc…We’d also go to ballets and plays and movie theaters. Very fond memories for me.  We don’t watch news, that’s for sure!  I find ballets and musicals that might even bring her joy from her past. Symphony concerts and plays.  Lots of animal shows and things with cute children.  We watch mostly things I know she will enjoy or has in the past.  She even likes competitions like American Ninja Warrior.  Although no more basketball which she was obsessed with years ago.  We’re not watching weird contrived reality shows they have now or chaotic things and for me… no commercials if possible.  Although I’m pretty sure she doesn’t mind them so much, just more variety in her viewing pleasure. We can “talk”, eat and do “activities” even when it’s on.  Definitely a different experiment than with children.  

I hope you find some solutions that are comfortable for both of you.  This is just blechy! 

harshedbuzz

*Ollie* wrote:

jfkoc  - I wish I could accept her tv watching.  There's no way that can be good for her.  

I get that it's hard to watch a parent lose the ability to entertain themselves and regress to such passive activity, but unless the TV is agitating* her, I would let her be. 

She her a terminal disease getting through the day as gently as possible become the goal. "Good for her" becomes moot at a certain point. Things like a balanced diet eventually give way to ice cream if it means "calories in" with bonus points if you can slip medications in it. Fastidious grooming gives way to less than daily showers and clothing that's easily slipped on and maybe slept in. Enriching pastimes that were once a defining part of who they are do fade and become replaced by simpler things.

Whatever dad's faults, he was a bright and handsome individual. He'd been meticulously groomed and dressed (when I was in high school, we often camped for the summer and dad found room in the tiny closet for 2 dinner jackets) his entire life until dementia when he might wear the same food encrusted tee for days because he believed he'd already showered and dressed for the day and wouldn't cooperate with my mom when she offered a change of clothing or a nice hot shower. He was well educated and well read, so watching him devolve into someone glued to the sofa watching "Daniel Tiger" or "Ancient Aliens" was painful. The alternative, when he'd had a go at rewiring the TV or remote until they didn't function, was staring at the ceiling. 

* I did have to put parental controls on dad's TV. He sometimes purchased random pay-per-view packages and would confuse plots on mom's crime dramas with real life. He was also upset by news and weather. This meant he believed kidnappers and storms were always outside the door. Once I asked him how he was doing and he told me he'd "been murdered by the bad guys earlier". 

HB

DaveL

Ollie -

The point I'm always reminded of is that sometimes what you think isn't what's important. My mother is doing something similar in that she has many things around her that used to be fun and important to her, but she rarely does anything without someone asking her to do it except constantly move the things that she sees around her space. 

Take the time to find out what TV she's watching and try different channels if it bothers you. I agree that watching cable news - no matter which channel it is - isn't the healthiest for most people so check out the other channels to find something that your LO likes. And if it turns out to be re-runs of old tv shows it might spark something but might not.

And if all that screen time isn't good in your opinion switch it to something that you probably would approve of - digitized family movies and pictures and let her rewatch the family history - that always seems to be a parent pleaser.