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I am afraid that soon after mom moves in to memory care she willl drive them nuts and they will ignore her. She constantly needs a tissue, her pillow adjusted, to go to the bathroom, a cracker, a tooth pick…it never ends. She is in AL but she is forgetting steps in simple routines and they think it is beyond MCI and now dementia; so do I. I have been propping her up but can no longer. How do caregivers in MC deal if one person needs too much? She is just starting on Seroquel so maybe that will help?

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No, MC has limited aides too. They will not be at Moms beck and call. Same with Longterm care. There is no one on one.
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My mother is a GIGANTIC handful; just her continuous need for tissues alone is enough to drive anyone to drink. She lives in Memory Care AL too, since June of 2019, and she's doing fine and the aides are doing fine WITH her, too. They give her tissues and she puts them up her sleeve and/or in her bra! If your mother needs her pillow adjusted, she'll have to pull the cord or alert the staff in whatever manner they use at her MC, and then wait for a staff member to answer the call, EACH time she has this 'need'. That may miraculously cut down her 'needs' or else she'll just learn to wait for her needs to be met.

They put the residents on a toileting routing, normally, in MC. So they'll ask your mother every 2 hours if she needs to use the bathroom? They will establish their OWN routine with her, as they have with my difficult mother, and that is a lot of what the HUGE monthly cost is for! Don't worry too much; they put up with A LOT in MC, trust me. My mother is the equivalent of 3 residents with her nonsense and they put up with her willingly! I always thank the staff PROFUSELY whenever I go over there, too, b/c I know what they have to deal with. ((((Eyeroll))) The staff does not ignore my mother, either........what they do with the residents is they get them up and dressed by 9:30 am and into the activity room for the majority of the day; that's where they eat, socialize, watch movies, do activities, etc. The aides help all the residents (23 in total, for the most part) and it's easier that way. If a resident is on hospice, then they can stay in bed all day, o/w, they stay in the activity room.

BTW, toothpicks are a no-no in my mother's MC. Nothing pointed, sharp or potentially dangerous is allowed in MC. My mother had a meltdown over that rule, too, b/c she loooooooves her toothpicks. She got over it. You'll get a list of what they CANNOT have in their rooms once she moves in.

Wishing you the best of luck letting go of your worries and letting the staff deal with your mother!
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HHS4Pat Dec 2021
Thank you so much. So appreciate your input!
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The aides in MC do an amazing job at handling all types.

When my mother was still at home, she went through about four boxes of tissues a week. At night, she'd grab one from the bedside table, dab her nose once, then squirrel it under the pillow. My dad would find 20-30 of them under the pillow every morning, and I found at least 200 of them under the bed at one time.

When I moved Mom to MC in 2019, I brought along a Costco size package of a dozen boxes of Kleenex hoping it'd last two weeks or so. I didn't spend much time in Mom's room, so I kind of forgot about it or figured they were supplying her Kleenex habit.

When we were cleaning out her things after she died, there was the unopened package of twelve boxes right there in her closet where I'd left them. They simply didn't have them available, so the obsession with tissues was broken.

Ideally MC will keep your mom occupied with other things so she too will break those habits. She'll be in different surroundings which also tends to stop some of that OCD behavior, so don't worry that she'll be too high maintenance -- they've seen it ALL.
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BurntCaregiver Dec 2021
MJ,

That's pretty sad that your mother's tissues were found unopened in the closet.
What did they do for her nose in MC? Just let her have snot all over the place? Or sit picking her nose all day because there's no tissues?
That's bad.
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It is true that nursing homes, memory care, whatever do not have the staff to cater to a person's every whim. Your mother will not be getting individualized attention in MC. It will be hard for her and a period of adjusting, but she will adapt because there's no other choice.
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Forgive the tangent - what IS it with little old ladies and flipping Kleenexes? Why the overwhelming need to have one in hand the WHOLE time?

We currently have one client who has to use a stand-aid to get up from her riser-recliner and even then has great difficulty, needs two people to assist, but the one thing that really does make me want to tear my hair out is that every single time she reaches first for a tissue and clutches it in her palm. We gently remind her that she needs both hands free to grip the rail. She won't let us hold it for her, but has to tuck it in to her watch strap, where it doesn't fit because the strap is already too tight (she won't let us alter that, either). IT TAKES ALL FLIPPING NIGHT!!! Aaaaaarrrrggghhhh..!
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MJ1929 Dec 2021
I confess I've been tucking a Kleenex into my sleeve like an old lady since I was in my thirties! 😄
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I hate to tell you this but from first hand experience, your mom is going to be totally miserable and will decline fast.
The places are all understaffed and if you need help doing anything, you won't get it.

They will totally ignore your call button.

Your mom will not get help going to the bathroom which means, she will fall trying to do it herself or she will lay in her own urine and feces for up to an hour or longer.

If mom is labeled trouble, they will put her on medication and she will end up zombie like.

The Best place for mom is at her own place with Caregivers or living with a loved one and have Caregiver help.

I hate to say this but she'll be gone in 6 months.

If your Dad was in the Military, you could get up to 30 hrs a week Care help.

Prayers

If mom is labeled a trouble maker
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scrabblequeen Dec 2021
WOW... you must have had experience with a horrible facility. "BEST" place is NOT always with family. The memory care unit my mother is in will do everything and anything, and I expect to pay extra for that attention.
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That won’t be a problem. They’ll keep her sedated so she sleeps all the time. At least that’s been my personal experience. And it sucks.
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MJ1929 Dec 2021
Utterly untrue.
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Don't worry. Your mother's behavior is no unique. The MC staff have seen it all and they are familiar with every case of dementia. Rest asure that they will be able to handle your mother's case.
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Your mom's "high maintenance" may actually be anxiety. She feels anxious and wants people near here all the time to make her feel more comfortable. Giver her medications some time to work.
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HHS4Pat Dec 2021
Absolutely anxiety. She has confirmed that. You are right.
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I guess I may be a bit in the fog here. You say she is in AL with dementia as is my sister. But when I moved her into AL, the information they gave me was that AL even with memory issues still depended on the resident being somewhat self sufficient in personal needs like bathroom, showers. Maybe I am asking a question here about AL versus NH. When the resident becomes dependent for personal needs at my sisters' AL, they have told me that they may ask for her to be moved out or to a NH. Maybe she has become used to her routine of over indulgence under your care. But at any rate, you can only try and see how it goes but in my experience if she can't be in her own apartment in AL, get her own tissues and adjust her pillow, she wouldn't be able to stay in AL where I have my sister. Even with dementia, she has her own small apartment, small refrigerator, TV, bathroom with shower and control of the heat and a/c. Maybe others have a difference experience but assisted living is just that, assisted and not total daily routine care like getting her own tissue.
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I find this so sad, that when one gets old and has memory problems, they are sent to a "home". What has happened to family taking care of the elderly? Having in my past worked in nursing homes, they are all understaffed, the aides paid poorly, and therefore could care less about the residents. (Perhaps a small percentage actually care). The best for anyone is being in their home, with aides, nurses whatever they need given in their own home. I am so thankful my parents both were taken care of in their home, yes, it cost to hire around the clock help, but they were happy.
Sorry, I have seen abuse, lack of care, and now to add to the problems, the threat of covid. Please think about home care, you can use her money, am sure she must have her own SS money coming in and perhaps other money, Mother paid for all her help,
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Flowerhouse1952 Dec 2021
I don't think you understand that not every family is equipped to care for family members. Some don't live close, some have health issues if their own, some deal with their own disabled children or other family members, some don't have the patience, mental capabilities or know how to care for someone. Some are forced to work because they need to live, some can't get family leave, some don't get along with the family member needing care, now with covid, it's very hard if next to impossible to find live in help or for just a few hours a day. Especially living in rural areas. You have an exceptional situation where your mom could find and pay for help in her home. Please don't judge others. Families are doing the best they can.
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When my client had to be moved to MC her sitters went with her for the 9 hours 7 days a week she was up. She goes to bed early so staff takes over then. Of course she pays the extra for the tier3 level shes on. I,am sorry to say she WILL NOT get he care for for those kind of things she is used too. Good luck.
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Like anything else some of it depends on the MC you choose, there are of course those that give them a bad name but I doubt there will less attentiveness than she is getting in AL. More to your question however, this obsessive behavior seems common and is probably another sign of dementia. Unwittingly you are probably feeding it by attending to her every need actually and the staff at any decent MC (short staffed or not) will know how to minimize this. Out of sight out of mind really does help in my experience as does distraction and I would take this move/transition as an opportunity to reset, as MJ suggests remove the tissue box and crackers. Maybe remove yourself too from her “space” visit in the communal spaces if you can at least at first, it occurs to me that maybe one of her obsessions is asking you do do things for her. It’s so hard to remember and to judge for us because it’s hard to remember their brains aren’t operating the way we are used to. Removing these things from her awareness probably won’t deprive her the way you feel it will. But even if it does at first the main thing of importance is she needs to be where she is safe and cared for properly, it sounds like that is Memory Care. If they only knew but thank goodness they don’t, the emotional turmoil we go through for them often making it all harder on us in many ways. Just keep loving her.
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Riley2166 Dec 2021
I live in assisted living and while I am a fish out of water 100% high functioning and do l00% of it all myself (I can't walk due to spinal issues), I assure you most of the people here in A.L. have some level of dementia. Some people need more attention than others. The care provided is based on the level they are in and how much help they need. Do not be concerned. They are trained in what and how to do things.
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I live in assisted living where there is memory care. From what I observe the memory care caretakers are well trained and capable of dealing with the never-ending "needs" of the patients. Do not worry - she will be taken care of and you can have peace. Trust me on this issue. Now take care of yourself and tend to YOUR needs.
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And here I thought that my mother was alone in her random obsessions with toothpicks, Kleenex tissues and brushing her teeth. She's a handful to say the least, calling my name continuously - wanting something - all.day.long. I'm taking it day by day and trying not to let myself get overwhelmed by coddling her and running to every beck and call - which I used to do and it only served to make her more spoiled and me more burned out. Some days it's like I'm Sisyphus, rolling a boulder up a hill only for it to roll down every time it's near the top.
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Wishiwashiking Dec 2021
Not alone! Feels so good to know.
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Answered Oct 12, 2021
Memory Care - experiences /advice?
Until nursing home assisted living make their facilities safety has or will change I would not recommend seniors to go there. For the reason listed below.
COVID-19 tore through long-term care facilities across the country, accounting for a third of coronavirus deaths during the first year of the pandemic. Tragic tales of deaths due to problems with testing, personal protective equipment and infection control emerged at state veterans’ homes in Massachusetts, New Jersey, and Texas.
The inspector general’s report on the VA Illiana Health Care System in Danville is the first to publicly detail extensive breakdowns at a facility operated by the U.S. Department of Veterans Affairs. The agency runs a system of 134 nursing homes that serve roughly 9,000 veterans a day across 46 states, the District of Columbia and Puerto Rico.
An examination by the Government Accountability Office in June found there were 3,944 cases and 327 deaths among residents of VA nursing homes from March 2020 through mid-February. The cumulative case rate among residents was 17% and the death rate was 1%.
Those numbers are miniscule compared to nursing homes nationwide, where researchers estimate there were 592,629 cases and 118,335 deaths last year. The death rate among long-term care residents as of March was 8%, according to the COVID Tracking Project.
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PeggySue2020 Dec 2021
Yeah, and now they aren't, because over 98 percent of them are FULLY VACCINATED and most are getting boosters. The ones eating horse paste and your kind of cure are the ones at risk of dying most and SHOULD be isolated from any socialization that goes on at the home. Including with unvaccinated family.

Play stupid games, win stupid prizes.
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Maybe she asks too much because she gets results and attention.The nursing home my mom's (dementia/anxiety) in is always doing something with the residence to help get them out of themself .Mom also has a lot of people to communicate with other than me if she wants to.They are well use to handling people of all levels so I wouldn't be too concerned about her driving them nuts. And from what I see they know pretty much where everyone is at all times and are always communicating with them
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HHS4Pat: Imho, perhaps the patient's physician needs to make a visit to her for a recommendation on medication(s), et al. In re the facial tissue request, she gets more than a solo tissue each time.
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My mom was in AL a few months before she moved to a senior apt near me. She was extremely demanding and high maintenance. They were blunt in telling her to get her own tissues and encouraged her to do for herself. It took her a month or so to get with their program.
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Hi all, Thank you so much for your replies. At first I thanked everyone individually but can’t due to time. I will say, though, I am constantly amazed by the fantastic wealth of knowledge this group provides! Your thoughtful and insightful words are so appreciated! Thank you for taking the time to support us with what you have learned along this journey. You have blessed me.
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Llamalover47 Dec 2021
HHS4Pat: Thank you for your post.
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Pat,

If your mom's "high maintenance" is fueled by anxiety, Seroquel will probably help. It certainly helped my mom. Still, memory care will be an adjustment for her. Make sure her needs are met, but don't worry about the endless wants; the crackers, the toothpicks, etc. etc. The staff will know what to do. That's what you're paying them for!
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I suspect they will deal with needs and wants will soon get sussed out and not pandered to or as you put it ignored. There is a big difference between real needs and attention wants. They well be used to people being like this and will deal with accordingly - unless she becomes violent in which case they may require her removal and placement in a more secure unit.
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One of my clients takes Seroquel.
This is to be discussed with your mom's MD and do your research.
It may take some experimentation to know the right dosage, and possibly adding other medications. I cannot emphasize enough to research these drugs yourself and discuss with medical professionals you trust.

My client exhibited, while not officially diagnosed, throughout her life a narcissistic personality disorder. During the transition from her home to memory care, she physically fought with staff. She had to be restrained. Some of this was medication and some of this behavior is 'who she is.'

This is a transitional time for your mom. Do keep in close contact with dept heads, social worker, and MDs caring for your mom.

From my perspective as a care manager, I was informed of this client's personality and befriended her accordingly, i.e.,

1) I acknowledged her feelings.
2) I did not argue - if anything, I would agree with her.
3) I would (and still do) tell her how important she is and valuable in the group (memory care unit), helping the staff with her input.
- While your mom may not need or want this kind of interaction, it certainly help(ed)(s) my client to know she has me 'in her corner'. She trusts me. And, she remembers me (I see her weekly as family live out of state.)

In my situation, the family had to provide a 'sitter' within the memory care unit (to be with her in her room) for a few weeks until she was able to be managed w the regular staff. The staff, while well trained (and super heros to me) are experienced with this type of behavior, they cannot give one person all the attention when they are dealing with 10-15 people in a group setting. Although I believe they check in on her every two hours throughout the night. Memory care aides/staff have 'seen it all.' This doesn't mean its easy.

Even while I intentionally established a trust with this client from the beginning of my working with her (about a month or so before she transitioned into a hospital and then transferred to memory care), I can do 'just' so much, depending on her mood and other factors (how much sleep she got the night before, the hallucinations she believes are real (= she gets very angry), if meds need to be adjusted (again), or if she has a pain and doesn't express physical pain.
- In some situations, she needs to be separated from the group setting.
- She may need someone to sit with her in her room (a 'time out').
- Other individuals may need to be physically restrained. Attempting to or hitting a caregiver or staff is not acceptable. Nor it is acceptable to hit another resident.
Each person is different.
* When you speak with her, listen and acknowledge how she says she feels.
REMEMBER, SHE IS FRIGHTENED / FEARFUL / CONFUSED. She doesn't understand what is happening to her.
- When this client was first in a hospital and at times, restrained, she was on different meds-with varying responses (ie screaming and physical fighting with staff and a sitter = a 24/7 caregiver in the hosp room. I walked in and asked her quietly "are you hungry?" . . . tell me what you want. Within moments she fell asleep. A part of her realized I was listening and acknowledging her - and her feelings. Even with dementia, a person gets compassion and caring - places in the brain and energy fields.

She may 'strike out' to protect herself as she deems necessary for survival and how meds affect an individual. We really do not know what her brain chemistry is telling her.

If you can, give hold or give her a hand massage. Touch, gentle touch is very important. Often it is impossible to verbally talk / communicate. They 'get it' with compassionate, gentle touch.

* Never ever argue. As they believe they are always right, this is what needs to be reinforced.
* Take care of yourself. You need time outs. We all do. Even 45 minute meditations a day will help you.

Gena / Touch Matters
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HHS4Pat Dec 2021
Thank you, Gena.
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MC facilities have larger ratio of caregivers per resident and they are trained for that sort of needs. In memory care they will evaluate her and set her up with the appropriate care level she needs. In MC there are more caregivers per residents for that specific reason. Important things for you to ask the facility is what is the ratio resident to caregivers, the more the better. Please keep it in mind that currently it is really difficult to find and keep caregivers, it is a low paying job and any and all facilities are dealing with constant training and turnover.


Seroquel is good and it did help my dad but as the cognitive decline is a constant it is going to be an upward struggle.

Best wishes to you and your family.
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My mom is high maintenance because my father has made her that way.
Occasionally he calls to complain about it but I tell him he made his bed ....
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hug!!

“How do caregivers in MC deal if one person needs too much?”

like you said, sometimes by ignoring.

where i live, the more “trouble” the elderly person creates in a facility, the more they’ll be neglected by staff.

(pressing the call button often, etc., wanting this/that).

also the more the family watches, and asks for this/that, the more the staff will neglect the person.

i’m just talking about where i live. the facilities here are awful.

of course there are places in the world with kind, caring facilities.
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