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Koala58 Asked June 2021

Does anybody have an elderly parent refusing outside care?

My mother has dementia and just recently started refusing to take her meds and allow help with her showers. She's starting to smell bad. I am afraid it could interfere with her health. The caregiving company is complaining to us about it and threatening to call adult services. We have an appointment set up for a new caregiving agency. What else can I do?

Tandemfun4us Jul 2021
My mom did the same thing and it caught up with her….she ended up being aggressive at church and they called 911. My sister refused to take her home because mom wasn’t right so they transported her to the psych unit. Best thing that happened to her. They stabilized her and we picked her up and lived with her for 7 months. If we had found a AL, we would have had the hospital transfer her there. Then mom started up again with refusing. So, since my husband and I are not going to be co-dependents. We told mom that the agreement for living with her was: she eat 2 meals a day and take ensure for one, she take her medications and not ask what they are for (she had a tendency to not take medications due to the written side effects), she drink 32 oz of water a day and go to bed every evening and rest-even if she wasn’t sleeping (according to her), and she go to doctors appointments and do what the doctor says. She agreed and did it. Sometimes it was a fight because she didn’t remember well. We told her we would have to call Adult protective services if she refused because we were not going to argue with her. Then, we told her where we went, she would go (we had family in other states). We did a shake down trip a couple of hours away and after a week, she said leave me here. We found a wonderful AL and she loves it. It was supposed to be temporary but since she is living alone in her own little apartment with food served, laundry done, and housekeeping….she is in bliss. So, while it is hard…not being a co-dependent was the best way to handle a woman who wanted what she wanted and was unable to care for herself.

Beatty Jul 2021
Oh yes. Sigh.

I remember one poster used humour. Told her Mother she smelled like an elephant & she would need to move to the zoo! Got a chuckle & she gave in.

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Geaton777 Jul 2021
I'm a little shocked that the agency doesn't know how to handle this, nor seem to have an aid that is qualified to do this task. I would change agencies if they are this lame, since your mother's needs will only increase and so will the qualifications of the people who come help her (like being a fall risk, or administering meds -- both require someone who is more than just a companion-level caregiver).

The showering thing is a very common challenge with LOs w/dementia. Make sure the bathroom is warm, senior-friendly and safe, almost "spa-like" with nice smells and maybe even candles, etc. You can try telling your mom a "therapeutic fib" that she has an appointment or some such thing and therefore needs to get ready. Reasoning usually won't work, but try asking her questions to bring her around to compliance so she gets a sense of choice or control: "Would you like to be pampered at the spa?" "Have you seen the nice changes we've made to your bathroom?" etc. whatever you think will motivate her, and it will be an ever-changing, ever-challenging effort. You can start off with just sponge bathing, something less invasive into her privacy.

My 99-yr old aunt with mod/adv dementia has a daily caregiver but we have a separate woman (a neighbor who is a part-time caregiver) come in on Mondays to give her a shower. My aunt is mostly compliant every Monday and has been for the past 2 years this neighbor has been showering her. Now we have started to have this same woman also coming in on Thursdays to give her a second shower and my aunt screams and carries on like she's being murdered by a stranger. Go figure. So, she gets a sponge bath, and not happily. Creativity and pre-emptive thinking is just part of being a caregiver.
BurntCaregiver Jul 2021
Geaton777,

It doesn't surprise me that a care agency doesn't know how to handle a situation involving clients who are non-compliant with care. Doesn't surprise me at all.
Care agencies know how to collect payment. Their end is to send someone willing to do a client's care. They don't have to guarantee that the care gets done though because it gets paid for anyway.
BurntCaregiver Jul 2021
You say that your mother's refusal to take her meds and accept hygiene care is a new behavior.
How's her relationship with the caregiver or caregivers the agency has sent so far?
Did she normally get along with them and like them?
Is there more than one coming to her house?
Do they send the same people all the time, or is it different ones each week?
I have to ask this question, so please don't get the wrong idea. Elderly people often don't think like younger people and have different opinions about some things.
Are the agency caregivers a different race from her?
A lot of times elderly people will not be agreeable to caregivers who are a different race from themselves or if they have an accent of some kind too.
I worked in elder homecare for a long time and can tell you for a fact that caregiving for a senior is complicated situation in of itself.
When it is not structured and does not remain exactly the same every day with exactly the same people, it will get very complicated indeed. Elderly people do not adapt well to change, especially when there's a level of dementia. They can also turn on their caregivers for no reason that makes sense to us.
I worked for an elderly woman who had moderate dementia for years and we got along fine. She very suddenly turned on me and refused to be compliant with care. No one could understand why.
Her family and I finally figured out what her problem was.
I had changed my hairstyle and the color. This was enough of a disruption in the care structure to make her non-compliant.
I don't know how advanced your mother's dementia is. If she is still lucid enough to comprehend what she's being told then tell her that if she is unwilling to wash up, take her meds, and work with the help that she's getting, she will be put into a nursing home. Tell her that it won't be her decision because the state will be the one who does it. This may be something you will have to tell her regularly.
Many times the threat of a nursing home is all it takes to make a person care compliant.
As for the care agency threatening to call APS about it, well drop them like a bad habit. Do not use their service anymore. There are homecare agencies on every street corner these days, so it's not like they're hard to come by.
Your mother's dementia may be advanced to the point now where she will have to be placed in a care facility. Make an appointment with her doctor and he can assess how advanced her dementia is now. Good luck.

NicoleAnn Jul 2021
Hi. This situation reminds a lot of my mother. She is 89. She is mobile, has dementia, numerous falls, osteoporosis, stage III kidney disease. She has refused outside help, also.

Recently, she lost 22 pounds and fell (wasn’t hurt this time). She now weighs 99 pounds.

When her weight dropped more, I had a very high-anxiety weekend. I made up my mind something had to change. (This was a long time in coming, but when I feel adamant about something for mr there is no going back, no changing my mind). I decided she would either qualify for hospice or go into a nursing home. She needed much more help (medically and health-wise) than I was able to give her. I was fine with doing some housework and taking food over - she lives in her own home with my brother, he works full time. Anyway, I gave neither one a choice. I told them this is what we are doing.

Mom qualified for hospice. She is able to stay in her own home for now. She blames me for everything and thinks she needs no help. After ten years of doing this I am mentally and physically exhausted. I am POA and have received very little help.

I hope your situation gets better. Some times a professional can look at a situation and give clearer advice. You need to take care of yourself.

Best wishes.
KristineB Jul 2021
My mother was exactly the same.
Her attorney assisted me (POA) in placing her in a very high end facility.
She hated me anyways so nothing really changed in our relationship.
Denial is inevitable with dementia.
Save yourself and place her~ 💜☮️💪🏼🦋☀️
Kelkel Jul 2021
The caregiving company is threatening to call adult services because their patient with dementia is refusing things? Hmm something is being left out here or the company is lousy with dementia because that is part of it. My mother started refusing showers 4+ years ago. It’s fine believe it or not. I attached a bidet to the toilet (Lowe’s has them) & just use a no rinse shampoo for her hair. A warm sudsy wash rag can do the rest only as needed. Peace, contentment & calm routine is the key so no need to overdo it. I agree I would also get rid of that company & find a new one. Also, your mother even with dementia is in the lead. If you attempt specialized care several times with different caregivers & she refuses them depending on what it is, you have to possibly let it go. My mother stopped seeing her eye doctor probably 5 yrs ago. I get new prescriptions for her off her last one, it’s close enough. There’s no way she could tell them how well her eyes are seeing each slide, plus the doctor was not patient or kind to her. She also stopped going to the dentist about a year ago due to yelling, not cooperating much & wasn’t getting anything out of it anymore. Recently she had to stop the podiatrist due to 2 falls that have her bedridden this last month. Dementia will advance & we just have to adjust care as time passes. I never force anything on my mother. This has always been detrimental for her dementia. She always told me as a kid “kindness counts”.
TouchMatters Jul 2021
Not only compassionate and well said, extremely useful information shared. Thank you.

My mom used to say "It isn't what you say, its how you say it." I'm still working on this one at almost 70 !

Gena / Touch Matters
NeedHelpWithMom Jul 2021
I am sorry that she isn’t cooperating with the caregiver. I think that you need to call her doctor and explain her behavior to him/her. See if she needs a change in her meds.

As far as switching agencies, your mom could repeat the same behavior. I do understand that you cannot do the caregiving yourself. Can you look into an assisted living facility, memory care or a nursing home? Your mom may need to leave independent living if she is requiring more care now. How far along is her ALZ?

Wishing you and your mom all the best.

Taarna Jul 2021
Home health aides can not administer medications, that is a function of nurses. The aides can encourage and "remind" clients to take their medications but that is as far as they are allowed to go with this issue. Also, clients do have the right to refuse treatment if they are mentally competent. It appears your mom is no longer mentally competent. If she can not be managed at home, your next best option is a memory care unit.
TouchMatters Jul 2021
Aids can give meds if they are in a pill container, not the prescription container although this may vary from state to state.
For my client, I had to PREPARE the M-F Sat/Sun pill container for the care providers from an agency. It is a legal matter.
There are several levels of care in-between home/caregivers - assisted living - and memory care. Read Kelkel below you here.
TouchMatters Jul 2021
* APS actually may be able to help you network with government agencies (County Elder Services) that could help although if an agency is threatening this, it sounds to me that your mom's behavior (and lack of needed hygiene) has been going on for some time, not 'just starting' - ?
- Better yet, call APS yourself and tell them the situation and ask for referrals to help you address the issue.
- Smelling bad could be addressed with lavender wipes or something like that. While it is covering up needing cleaning, some fragrance may help - in the interim.
* Your mom's behavior is not unusual. Although you do not give us details with what kind of dementia or other behaviors - and how long.
* Not allowing help w/showers could be an embarrassment issue.
* Have you discussed this situation with her MD? Although many MDs are not trained (well) to handle dementia behavioral issues, ask if an anti-depressant is needed.
* While changing the care agency might help you, professional support/ intervention is needed who understand dementia behavior, i.e., a social worker, county elder services. Although you likely need a caregiver with more experience - this could be through another agency or an independent hire.
- Find a CNA - certified nursing assistant. They are trained whereas caregivers through an agency just 'sign up'. You don't know what experience they have unless you check references. CNAs - I believe is a six month training program. A person with more experience hopefully will help you.
- Your mom may be more amenable to a person's help if she relates well to the person offering the help (i.e., bathing. Even a sponge bath. Don't call it a bath. Perhaps call it a massage (if she likes to be touched) - with a wash cloth.
* Key is you learning how to manage / work with your mother as is possible. She may continue to resist. In some situations, unfortunately, nothing can be done until an injury occurs and the person is transported to a hospital for an Emergency. Your mother has rights, even with dementia (often surprises me to the degree of self-responsibly considering the degree of dementia).
- Explaining to your mom that you are concerned about her skin condition and potential 'serious' itching due to non-bathing may not register in her mind - I don't know.

Reason and logic is often 'out the windows' along with the (immediate) forgetting. This is WHY the forum is here. To help us deal with the non-sensical and lack of reason which is due to the brain changing. Be compassionate and continue to reach out to us here. There is never anything some of us haven't been through, no matter what it is or how bizarre it may sound. Gena / Touch Matters

Thirteenyrs Jul 2021
That doesn't sound right? Whether it's private or through an agency they are there to help and not give up or threaten. So, it sounds like you need to get her out of that caregiving company as you are and look elsewhere or do private care. If you or someone in your family can help with washing her up that might make her not resist. Obviously the key is finding someone who she is very comfortable with who can do these things that she needs. Even a dementia specialty company or someone who has experience with mild to severe cases of dementia would be ideal... In the meantime hygiene is obviously super important along with her meds... The key is finding someone who can take care of these things by family or company sooner than later. You can also call your local Alzheimer's Association or call the 1800 number and they can give you resources. Hang in there...

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