Mom (92) mod/sev dementia … suggestions PLEASE

sfilsin

hello …

mom (92) has lived with us for 10years but there’s been a gradual decline up until maybe the last year or so … it has gotten worse. i work out of the home so i am pretty much available to her for whatever she needs & at this point i am providing (or assisting/reminding) everything.
my husband /my self … our 3boys (16/13/11) & my adult daughter we all live together in our home.
so comes the suggestions/ help needed …

1. the boys are very aware of what is going on… but sometimes are frustrated by the confusion and repetition HOW can i help them to understand it better.
2. mom has had several falls and should be using her walker but refuses … her last time she thought it was nighttime before bed (when it was actually 5am) & fell in the shower (needless to say she NO longer takes showers alone) HOW can i “enforce” her using her walker.
3. obsessed with “her” … our cat … she rescued him, but he’s been part of our home since he was one (now 15) HOW do we navigate cat care and her wondering around the house … “i can’t find the cat” … “i don’t know where he is” … “i want him with me” … “i miss him” (even if he’s just been with her) i do have complete control over his care
4. need suggestions regarding daily needs … is there a way to organize ADLs

thank you … sue f

Damiross

• I can speak to item 1. I hate to say this but the only thing that can be done is to have patience. I'm 68 years old and am still trying have patience with the same question asked multiple times in a short period of time.

sfilsin

thank you for responding… yes patience is the most valuable & yes it is extremely difficult to keep it … take care …

SDianeL

read the book “The 36 Hour Day” and discuss appropriate sections with the children. Tell them that her brain is sick and her thinker isn’t working. You can’t reason with someone whose reasoner is broken. She should not be left alone. Late stage dementia patients are a fall risk. Falls are unavoidable even with 24/7 care. Her memory is gone so she will no longer remember to use her walker or know how to use her walker. She needs help walking. As you said she needs help showering. Many PWDs have obsessions with animals. It may be caused by her anxiety. I doubt you can change that behavior. If it’s anxiety related you could talk to her doctor about anti anxiety meds. Keep cat food put away so she can’t feed the cat or eat the cat food herself. I doubt you can organize ADLs unless you hire 24/7 care. Again it’s because she won’t remember or know how to do them by herself. PWDs lose the ability to initiate tasks. It’s best to help with ADLs when the PWD is at their calmest. I found right after breakfast worked for my DH. You can also search for dementia caregiving videos online by Tam Cummings and Teepa Snow.

towhee

The 36 hour day is a very good resource. If you look under "Groups" on this site you will see one called New Caregiver Help. It has some good resources including one called "understanding the dementia experience" and info on the stages of dementia. These will be valuable for you and maybe for the 16 year old. There are resources for younger children, but not so many for the teen age group. You might look at some youdtube videos from the channel dementia careblazers, specifically search for "dementia careblazers repetition" and there are also resources on alz.org. Teach yourself and the children to breath for stress relief when in frustrating repetitive situations.

About the walker, if saying the doctor said to and just constant reminders does not help, you might try to make sure she has good sturdy furniture she can grab if necessary in her usual walking path.

the cat- that might be boredom and/or anxiety. Try saying something like cat is taking a nap, could you help me with "activity".

I am not quite sure what you mean by organize ADLs. As the previous poster said she will lose her ability to self start, and you will have to direct at least some of these. Check out the alz.org site, look for info on ''care plan".

In general, PWD will need start to need short simple slower conversations and a structured environment. They will need more of your time and attention. If you want to continue with in home care you should look into adult day care and/or having help at home during the day.

H1235

This is a short article that may be helpful.

understanding-the-dementia-experience 4.pdf

harshedbuzz

This is a difficult situation.

I'm sure there are books and therapists that could be used to educate your sons on the impact of dementia, but knowledge isn't going to change the fact that their grandmother is sucking all the oxygen out of the household leaving their mother frustrated and frazzled.

You don't get this time back with them. Perhaps it's time for a MCF for her which would allow you to focus on raising your children and being a daughter to your mom instead of trying to do it all.

HB

sfilsin

https://alzconnected.org/discussion/comment/256699#Comment_256699

thank you so much for all of this insight … we have much of this in place … she lives with us and i am home basically 24/7 … if not i make arrangements to have someone in the home …

i have the book you are referring to and have actually just started reading it …

Gratefully

sfilsin

https://alzconnected.org/discussion/comment/256699#Comment_256699

thank you … all information is helpful

sfilsin

I basically meant a care plan so that I can be more organized and helpful.
thank you

sfilsin

thank you for the link

sfilsin

I hear you … however any outside “help” a or “placement” is not possible at this time & yes $$ is a lot of the consideration

Chammer

You might try a Joy for All robotic cat to see if that helps with the cat seeking behavior. At 15, your kittie may or may not be around for much longer and if your mom is able to connect to a replacement kitty it could ease that transition and give her something that doesn't scurry off when it needs a break!

sandwichone123

In my opinion, your top priority should be protecting the kids. They need to have safe spaces where they can get away from the chaos. It is admirable that you are modeling caring for family, but they also need care and a safe place to develop and grow. Optimally they should be able to have friends over in a protected place, but that is not required.

Be aware that as dementia progresses, the sufferer often becomes aggressive or abusive to one or more of the children. Please be on the lookout and remember that there is nothing you can do to change your mother's outcome, but protecting your kids will set them up for a lifetime.

Maru

https://alzconnected.org/discussion/74418/mom-92-mod-sev-dementia-suggestions-please

Sounds like you need help. I assume that your mother is on Medicare. Medicare may cover some help if you ask her doctor for referral for an in home evaluation for physical therapy. Physical therapy does a whole lot of things besides actual physical therapy. At the very least they may be more successful in getting your mom to use her walker.

harshedbuzz

https://alzconnected.org/discussion/comment/256741#Comment_256741

Have you spoken to an elder law attorney? If money for hired help isn't available, she may qualify for Medicaid with some structuring of her assets into a trust. Please don't rely on hearsay legal advice from friends or family. Medicaid does provide some in-home care or even placement in a facility (Institutional Medicaid).

Also, if she has traditional Medicare, she may qualify for some hours of care via the GUIDE Program in some places.

HB

sfilsin

https://alzconnected.org/discussion/comment/256916#Comment_256916

understood however even though we have had physical therapy a couple times still refusing the walker … MORE LIKE … forgets the walker … she needs to be prompted… even if walker is in sight she will not “think” to utilize it …

Daisy4U

I found "The Caregiver's Script" (book one of the Sandwich Generation Series), by Rutha Powers, to be invaluable. It's section on helping Kids cope with such challenges was so helpful to me and my family. I got it on Amazon.

MN Chickadee

I had little kids as mom's Alzheimers started progressing. Your arrangement may be working well enough now, but that doesn't mean it will in a few months. I would have a plan B and plan C in place because your children must come first. They only get one childhood, one mom, and deserve to come first. My mother was an elementary teacher and special ed teacher and she loved kids. Not so much with Alzheimers. She became aggressive with my kids. It got to the point where it wasn't fair to them and I couldn't have them alone together. If I were you I would meet with an elder law attorney and learn what it will take to get her on Medicaid long term care and have some places chosen that have Medicaid beds in case you get into a crisis mode. Crisis mode is not the time to be doing research. Things can change very quickly with dementia. Fine one day, crisis mode tomorrow. She may suddenly have a steep drop off with behavior, some people can suddenly become combative or violent. Things like covid/flu/UTI or a fall can send them into a tailspin and the physical needs may suddenly skyrocket. Waking at night and incontinence are nearly inevitable with dementia, and that takes a toll on caregivers in a way that may literally not leave enough of you to go around, and again, kids come first. If you manage til the end at home then great, but please have a back up plan in case you need it. Changing diapers, cleaning feces off the bathroom when they try to do things themselves, washing the bedding ever day plus not sleeping at night - this is literally what caused us to have to move my mom to memory care. I was glad to have done my research, vetting, and touring facilities because the need to move her came really suddenly. With all respect to PWD, it becomes like having an enormous toddler except they can't learn anything new and they regress instead of grow up so it's harder. We had to babyproof the house for mom.

Falls are inevitable. PWD forget their limitations and we can't have hands on them 24/7 and it only takes a second to go down. Eventually a fall will probably be bad and have large implications. My mother could not remember to use her walker. Once she declined a bit and could no longer get out of a chair alone it was easier because I'd just put the walker in front of her, but up until then she would forget, and then fall. We also struggled with a cat obsession. We had to lock the cat food up but then she started feeding it all kinds of weird stuff that made it sick. I still chuckle about the cat turning her nose up at a bowl of hot salsa with Hersheys syrup sprinkled over it. Eventually the cat died of old age and we did not get a new one while mom was still at home, because it was such a point of anxiety and made all of us crazy to have her constantly obsessed with it. We got her a Joy for All cat and she took to that. They are eerily life-like.

A care plan or lists may help some days, but probably will be useless some days. Being flexible is the name of the game, just getting through the day is the goal. I used to say I was the mayor of Crazy Town, trying to get mom to do basic ADLs and raise my kids and wrangle everyone and put out fires everywhere (figuratively and literally. She was a nightmare in the kitchen if I took my eyes off her for 5 minutes.) I can't over state level to which life felt insane and tenuous. Some days all I could do is laugh.