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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.

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Imho, insist that she bathes and washes her hair. Prayers sent.
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Reply to Llamalover47
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How well you describe your mother's situation! If you like this AL facility and the staff, what do they tell you about how they handle resistance on the part of residents? The facility should want its residents to be healthy and clean. Do they provide help at higher levels of care or do you hire your own?
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Reply to RedVanAnnie
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Oh My ! That is a lot for the both of you. OK Drill Sargent your Mom has just joined your Army of taking care of her daily cleaning hygiene. No buts, if's and not's. She's got to do this in order to live a life of dignity. Twice a week bathing ? not caring for herself properly ? living in a mess? those are not good signs and she is screaming for help in her behavior. Your Mom needs better daily care. If she cant get it where she is ... find a place that will do it for her.

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
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Reply to Cecimerce
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I sure feel for you and kinda in the same boat so to say. My question is she lives in an AL facility and her apartment and her physical hygiene is that bad. The places that I've spoke to they clean the apartment, take out the garbage additional personal needs do cost extra though. Why is it up to you to take care of her they're suppose to have around the clock care there for there residents is my understanding isn't that part of the exasperate costs? My Mom has LBD as far as we know it started 5 years ago maybe longer. Her memory is horrible she can't even carry on a conversation anymore. I hope that you find the help you need with your Mom good luck to you.
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RedVanAnnie Feb 25, 2021
In an AL facility the amount of "around the clock care" is determined by the Level of Care Plan that grlover is currently wanting to upgrade.
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I know you’ll get alot of advice here, my observation I want to add is think about it, if she drinks sugary drinks 5 times a day, having unwashed hair and wearing the same clothes every day, not assisting her with her needs, I’m missing the “assisted” part your paying for in the assisted living- it doesn’t sound like the assisted living is doing such a great job
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If she does absolutely nothing but sit around, she really only needs to bathe and change her clothes once or twice a week.

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
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Chris52 Feb 25, 2021
You express your own agenda well. I think this poster’s concern is quite different from yours.
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"Finding the happy medium"...

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.
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Catherine1109 Feb 24, 2021
I put a white board calendar on fridge with things too do. My mom's had dementia for two years now every day new. Please read The Power Of NOW by Eckhart Tolle it will give you immediate peace of mind. I listen on audio tapes daily We're all struggling 😩 I feel your pain! involving her with calendar will give peace ✌ go easy on yourself I know I've been crying for so long
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My suggestion would be to think of and tread the new LOC plan as part of her transition back home. As I’m understanding it she’s still in IL apartment but patients just out of rehab are rarely sent home without visiting nurse eval and care, family care etc so present it that way to her if she complains. These are the recommendations or requirements from rehab/medical team for her or all patients like her after evaluation and or stay. Just like leaving the hospital you are sent home with restrictions and needs patients are sent home after a month in rehab (which is often a step down from hospital) with another “step down” of care. When she meets certain milestones and criteria (judged by medical professionals) she can be released from this extra care. Now we know that may never happen but if it’s just an adjustment on the road to baseline in her mind she may simply adjust and accept it as part of life eventually but just as important it isn’t coming from you it’s coming from the standard of care for patients with her issues. You know best wether letting her know upfront or just answering the objections as they come is the better way to present the info since, in my experience anyway, that’s not just an individual thing but can be a day to day thing and takes those that know her best to read.
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Reply to Lymie61
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If your mother can not/will not bathe, change her clothes or allow others to clean her place, I would suggest talking to her primary care doctor. These are symptoms of depression and possibly anxiety. Your primary care doctor should give her and evaluation for a geriatric psychiatrist. He/she can suggest behavior modification practices - written as doctor's orders - and most likely psychoactive medications which may lift her mood as well as alleviate some of her anxiety.
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Beatty Feb 24, 2021
True, if anxious, drugs may certainly help to be less resistant to care or lift mood.

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.
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There's a big difference between giving our LO's what they want and what they need. Often times the elderly behave the same way as children do. Kids don't want to take a shower or change their clothes, or eat their vegetables, or do their homework. We make them do it because they NEED to. The same with elderly. Lots of kids will get angry and throw a tantrum when they don't get their own way about something. So will elderly. You deal with both the same way. If mom isn't supposed to be having 5 sugary lemonades a day, then don't let there be that much kept in the house for her. Her LOC has changed and so she needs more care. A home/health aide coming in to make her wash up and change her clothes daily and to make her shower a couple days a week. One who will also take care of basic housekeeping too. There's no choice about it for her. Make her understand that she will be placed in a nursing home instead of AL if she refuses to comply with the new care plan and cooperate with the help.
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Reply to BurntCaregiver
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In my state AL is for residents who need assistance with their daily activities and/or reminders to do things, like it’s time for lunch or let me help you with your bath. But, if the resident is resistant to assistance or too forgetful to take care of things, then, the AL will notify you. Have they done an assessment to see if their services will meet your mothers’s needs? If her needs are too great, it will be obvious and you’ll get daily calls from the facility about the issues. That’s when Memory Care may be required. There, each resident gets much closer attention. They ensure the resident is cared for with direct supervision and personal care. While my LO was resistant to care and a handful at AL, she did great at MC. They tried a few things and soon she was very content.
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LittleOrchid Feb 25, 2021
So true. In the state where we now live there are distinct differences between Assisted Living and a couple of levels of Nursing Care. In Assisted Living, basic housekeeping and meals are provided. There are reminders and some assistance, but residents are expected to get themselves to and from meals and take care of their own personal hygiene and take their own medication. When more care is required, there is a move to nursing care (often staying in the same room, but for a higher fee which reflects the cost of the higher level of care). These are legal definitions, often with additions by the care facility. Most of us who are not involved call them all Assisted Living. I think that is because we do not want to associate these friendly residences with the more sterile and impersonal "nursing homes" of the '50's and '60's. Most of the mid-level AL facilities here seem more like apartment buildings with a dining room than the old-fashioned nursing homes.
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I worked so hard to help get my MIL into a nice facility while on Medicaid. Then she decided she didn't want to ever get out of bed. And they can't make her. We went through all sorts of efforts to coax her out, to no avail. The saddest part is there is nothing else wrong with her health or body so she is bed-bound for no reason. She is 85 and her own grandmother was bed bound for 20 years and passed at 103. I cannot allow myself to think on this. The way I have handled dealing with the 4 seniors under my care is to try not to have any expectations. I had an expectation that MIL would really enjoy the great care community. Then she just decided to never get out of bed. Oh well.
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Beatty Feb 24, 2021
Remember the original Willy Wonka & the Chocolate Factory film?

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 😱😭🤪🤗
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Actually sweets become one of the only things they can taste well. Its instant gratification. I would too watch the weight. I may ask that she not be given lots of sugary drinks. May something made with a sweetner. Actually, their diets should be balanced. But then there is the parties for birthdays and holidays. Like Alva said, let her enjoy.

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.
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I love that you have such insight into yourself. You seem to understand that some of this is your own control issues. I think you are well on your way to letting loose of some of the "perfectionism" where you can. I identify strongly with you. I was a good nurse (the one thing in my life I am proud I did a stellar job at), and a kind and loyal nurse (often hating days off because I couldn't watch over a very ill patient), but I was a bit of a Rachet at worst, as you describe yourself. I had one patient say to me "You know I love you, but can I ask? Were you an ARMY nurse?"
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!
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Reply to AlvaDeer
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Now she is in an AL you and they have more "control" if you want to look at it that way. You don't need guardianship, that would not really give you "control" over what she will not do. Actually, its against the law to "make" someone do what they don't want to even those with a Dementia.

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.
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