This is my first time to request comments, though I have commented a lot in the past.
My 84 year mom was diagnosed with vascular dementia in early 2020, though her symptoms began years before. She lives in an assisted living facility that I think does a good job. When doing the recent Level of Care plan (she did not attend, and I am her medical POA), I realized how much I was treating her as if she was a 5 year old, and wanted to include her, yet if she has been present, she would want everyone to just leave her alone. She doesn’t care (realize?) a whit if she wears the same clothes for a week, never washes her hair, has gained 35 pounds in the past year, I believe b/c she hasn’t moved in the past year while under Covid lockdown and has been drinking sugary lemonade 4-5x’s each day.
My response for the past few years as I am “looking out” for her has been more of a bossy drill sergeant (at least that’s how I feel. My nickname is Nurse Rachett). I do not have guardianship of her. Because of the lockdown, I had no idea her apartment looked like a cluttered rat’s nest, and her appearance was awful, with dirty hair, unchanged clothes, and dry, scaley skin. Over Christmas, she came down with Covid, was in the hospital for almost a month, and came home for 3 days. The facility could not handle her needs to have eyes on her 24/7 to make sure she kept the O2 cannula in her nose and help her walk to the bathroom each time she needed to go. So they allowed me to stay with her for that 3 day period before I was able to get her into a rehab facility for the next month. Boy did I get an eyeball full! After a month in rehab, she is home again, hence the new LOC plan.
Luckily, we (Mom & I) have not gotten into any power struggles (yet) over her care, which I’d sure like to avoid. I’ve been very direct, yet fair I believe, with hospital, rehab and now her AL facility about what I want FOR her. I am however, very concerned, when the AL facility tries to implement the LOC plan, we may have a tiger on our hands in my mom. These are simple things (to me) such as standby in another room when she showers twice a week, and changing her clothes every day. These are things Mom simply doesn’t care about anymore and she doesn’t realize are a problem (for me).
Sorry this is so lengthy; I’d so appreciate any ideas.
I am a FT caregive to my Mom. She joined my Army a few years ago. This drill Sargent makes sure of all her daily needs including hygiene. Since I have been assisting with her bathing... guess what ? No more UTI's that landed us in the hospital about 5 times a year... yep that bad.
Due to covid I have had to learn also hair care and have become quite the beautician. Mom loves the attention and gives me space to also telework.
The bottom line is... when a person no longer cares... its that they want this life to be over. There is no purpose. However, I find that no matter what stage a person's dementia is ... my Mom is around 5... they do have a purpose and it is our challenge to find this out in our own self growth.
I do wish the best for you and your Mom. God bless, Cecilia
It's not fun having someone make you change your clothes a certain time every day and make you take a shower more than once or twice a week whenever they day rather you want to or not.
Most Senior Homes are understaffed which leaves them without enough time in the day to do for your lived ones so they're always in a hurry to get stuff done so therefore, your loved ones have to hurry to shower and that can start as early as 5:30 in the morning just so they can get all the Seniors bathed and changed.
Lover ones are hurried to shower, hurried to change clothes and hurried to eat then sit around all day with nothing to do.
And all this is even worse on the ones with dementia because they can't tell anyone if a employee is mistreating them.
Also, if you give them any trouble, they'll just have the Dr medicate you.
Does that sound fun to you?
If you have to put a Love One in a Senior Home, you should deffiently find one that will allow you to install a camera.
For my 96 yr old dad that has 24 7 Caregivers in his own home, I had my son install Nest Camers so I can make sure I can see how he's doing at any time.
And yes, the cameras give me peace of mind.
The Caregivers stories can be different than my Dad's with dementia but Cameras don't like.
I can sleep more comfortable with the Caregivers knowing they are being watched.
And yes, I have had to speak with different ones about things they did and didn't do.
Prayers
What a good way to put it.
I suppose it will be giving choices (from reasonable, available options) & picking your battles.
In rehab my Mother would refuse to bathe & try to continue wearing dirty clothes. It seemed to be a mixture of keeping *control*, maybe faulty *memory* (not knowing when the last shower was) & *pride* (hated needing help).
Compromise helped: Showers on set days. Hair washed on set days. Change clothes on set days.
Also a bit of sneakiness! Do you want to be CLEAN? Worked better than Do you want a shower? Win/win. She could control her outcome & get what she needed!
Otherwise she would still be in that same outfit from 2017. She has no judgement left about such things.
But Vascular Dementia has already been dx here. In my experience this is a tricky one as drugs cannot restore judgement or planning (biggest probs with VD).
The "I'm fine" when filthy & "I eat well" when either dehydrated/losing weight/ overeating.
If home alone, or even living with others or in an AL setting it can spiral into self-neglect.
Those FOUR grandparents all bedbound with the bed in the middle of the room? That poor overworked Mother who worked nights in the laundry?
Please don't be her 😱😭🤪🤗
I told them not to give Mom coffee. It caused problems, if u know what I mean. She did have hot tea. I was there one day during mealtime and an new aide offered her coffee. I said, no, she is not suppose to have coffee. The look I got! I spoke to the RN in charge. She told me that there was a list of what residents were not allowed so she would tell the aide. But I needed to realize if Mom demanded coffee they would have to give it to her. I said OK but your aides will have to deal with the mess it causes.
So, fellow Army Nurse, some things here are good things. I know you worry about the weight gain; my bro sure had that at FIRST. Three meals a day, treats all the time, and he got spoiled to death food-wise at his great ALF. Not to death, but to some added on pounds. I say, let them enjoy it unless it becomes a real problem. You know, our loved ones, they can now control so little. They have so little say. It is good we remember that the loss of dignity and choice is dreadful, and that we can give a bit on how many showers a week are really "necessary".
I am impressed at your working so hard with care plan, and with your facility. I would say you have good insight into yourself, and I think I hear some determination to begin to let go a little bit. I say you are doing just fine. Carry on. Keep up informed!
The staff at the AL should know how to handle Mom. There are ways of getting them to do what they should. One of my observations was that they ask "would you like to get a bath now" of course my Mom said No. I told an aide once don't ask just tell. "Time for a shower" or "come on Mrs S time for a nice shower". My daughter worked in NH/Rehabs for 20 years. She says you make them feel like they made the decision. "Oh Mrs S, wouldn't you feel lots better with a nice bath and clean clothes. All nice and fresh." Then the resident says yes because it was their decision.
No one likes someone else telling them what to do. But when Dementia is involved, that person can no longer be reasoned with or make informed decisions. They do get like a small child. Self-centered and lacking empathy. You become the adult and them the child. No, you don't want to treat them like a child but that is their mindset now. So, once you realize that u are dealing more with a childs mind than an adult mind you look at things differently.
I would ask my daughter what should I complain about and what shouldn't I. Your Mom will never be cared for the way you would like her to be. I felt my Mom had Dementia so she deserved her hair brushed correctly (never happened in the AL or NH) and her clothes to match. So, I washed her clothes. I put them on hangers as sets, tops matching slacks. She had fine hair and last thing aides worry about or really need to is style it. So, I carried around a brush and small bottle of hairspray and did her hair when I got there. It was what I could control and what I felt I could do for her.
Allow the AL staff to do their jobs. That means allowing Mom to depend on them. Keep watch, there will be things you need to complain about but u will need to pick ur battles. You want the staff as friends. Mom would not stay seated at dinner if the food was not right in front of her. So, I started going just before dinner. I would sit with her until the aide said OK and then I took her to her table.
We had a poster who complained about his wifes jewelry not being put on daily. I explained to him the morning schedule of an aide and why that was not a valid complaint. Facilities have schedules. Aides have more than one resident in their care. Mom needed to wear her cotton bra because if she got skin on skin she would get a yeast rash. I complained to my daughter that there were days Mom was braless. Daughter asked me where the bras were. I said in the drawer with her socks. That was the problem. Aides dress top to bottom. By the time they saw the bras, Mom was fully dressed. So, I started putting the bras on the same hanger as the "sets". No problem after that.
ALs and NHs have their own routine. Thats how they get things done, thats how it works for them and residents and families need to adjust to that.
You may find that an AL is not the right fit. AL means just that, they assist. There is only so much they can do so there comes a time that skilled nursing is needed.