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?
BUT it's a problem. We've upped her anti anxiety meds and her Seroquel in the evenings and I'm still getting the aggressive with staff comment weekly. She's fine most of the day, it's the whole personal hygiene at wake up and shower is the issue, and it's gotten worse as her balance and mobility have worsened.
I don't know what the answer is; I don't want anyone to be hurt(she scratches and has pinched an aide in nose!), but neither to I want her so drugged into compliance, so she has no quality of life the rest of the day. Which is fine, she watches and participates in the activities, eats and socializes some. It's like Jeykl and Hyde, sweet and smiling ; or a scared calling Help! at the top of her lungs/swearing/biting/scratching surprisingly strong fighter.
I have had suggested to me a CBD patch, to mellow her out, but I have no experience with those products and haven't really checked it out yet.
I’ve had issues from the beginning with trying to first meet my mother’s needs when her dementia first became apparent. It got to the point where I was being held accountable for the state she was in, even though I had no power to change things because my father was in charge. I turned to their PCP and he said he would make himself available whenever I needed him because he knew of their stubbornness in refusing care.
Now, it’s my father’s turn. I actually had a sheriff turn up at my house investigating a complaint of possible elder abuse. While he was with me, his partner was interviewing my dad. The case was dropped immediately and I called my siblings and told them, “I QUIT!”
For the first time, we started having regular sibling conferences by phone, problem solving and making sure that not only his needs are being met but also mine. Our first step was a consultation with an elder care attorney and we now have plans in place.
I’m continuing on being his main caregiver since I am the designated health care surrogate, but my brother is now the POA. It has been helpful having him deal with the bills and all that goes with it.
We have an agency who supplies his care on a daily basis, in addition to a nurse that I’ve hired on privately who makes monthly visits for assessments. Since he’s nearing 100, blind and frail, I’ve found a healthcare agency which sends a nurse practitioner out to check on him and write scripts for his medication, so I don’t have to take him out for doctor visits.
But, Koala, I want you to know that my best defense was in my documentation. I’ve always written notes for reminders, and to keep track of what’s been going on with my parents and the healthcare suppliers. When the sheriff asked for proof that I’ve not been negligent, I had copies of every invoice that I paid and my log of events. As I tried handing them over to the sheriff for his perusal, he smiled at me and said it wasn’t necessary.
“What’s a little stink?” had become a family joke when he said it years ago, but the situation deteriorated and it was unsafe for him and surprisingly, me!
So, for your sake, listen to the great advice of the other writers and please, keep a log, not only to keep track of events but for your own protection. Hugs
I would make sure this new agency clearly understands the situation and has employees who know how to work with dementia clients. Meanwhile, it might be a good idea to start checking out MC facilities.
My limited experience with an agency wasn't great - it was less than 2 months mom refused to let them in**. They really weren't even doing anything yet, other than checking on her and pointing out missed meds that day! Only 1 hr/day. The plan was to increase time and duties as needed, but mom thwarted that plan! My observation was that ONE of the aides was worth hiring. She not only showed up for her shift, she would take on floor sweeping, cleaning the bathroom, etc, just because! The others not so much. I was also a bit displeased that they didn't schedule these "visits" consistently, aka the same time of day. Mornings would have been best, but they were all over the place.
Make sure you grill this new company - if the people sent to help can't do the job, then work on getting her into a facility.
**Yes, to answer the question in the title, my mother refused the care. When hiring the agency, they sent a nurse first to do a test and make assessment. She'd told mom could have qualified for some care to be paid by Medicare (relates to being homebound and needing personal care) IF she would accept assistance, such as with bathing. Nope, wouldn't agree to that! She didn't really need help with that anyway. But, I needed someone there daily to check on her (90+ with dementia, 1.5 hrs away, often didn't hear the phone) and to point out her meds if she missed them that day. This was only 1 hr/day, and they could just shoot the breeze with her if that's what worked! This lasted less than 2 months, and she refused to let them in.
Well. If we had a client diagnosed with dementia who lived alone and, despite our best efforts, had begun consistently declining support with medication and personal care, and we reported it to the family and nothing changed, then as mandatory reporters we would share the information with adult social care. Certainly we would. No choice in the matter. Basic duty of care to our client.
Are you sure you're not just shooting the messenger, here? How long had the caregiving company been visiting your mother?
If the elder lives alone, it can be the turning point from Safely Living Alone to Requiring Supervision.
Mine has *reduced* the home care support but not fully cancelled & although sometimes hard to motivate, is always co-operative so still on the 'safer side' (for now anyway..).
- 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
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.
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
If one agency is not able to help call another. Mostly the shower thing is they are afraid of falling, or embarrassment with having someone help them with a personal matter.
Tell her the Doctor ordered the shower/bath person to come out. Most of an older generation see the Dr. as authority person and will comply with what they say.
It is hard because you are now the person in charge instead of Mom - kind of goes against upbringing, but that's just the way it has to be.
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.
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~ 💜☮️💪🏼🦋☀️
When your mom dies, you will never see her again.
It has no bearing on what others can do.
The fact that someone will die some day has no connection to what care I can or cannot provide.
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.
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.
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.
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.
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.