For the past 1.5 years I become the primary caregiver for my mom who has vascular dementia (she wasn't taking her hypertension meds) and has incontinence. In the beginning after rehab, it was on weekends. After going to rehab again, it became clear that she can not live on her own. Although there are other siblings who live afar, it was placed on me, the youngest. I have lived alone for almost 30 years so this is a very big change.
I found somoene who I knew who is retired nurses asst, who worked in long term care when she came to live with me. Things started out great. However, they are bad. Mom verbally mistreats this person as she has done many other home health workers (therapists, RNs, etc) when she had home therapy. I feel that this person will quit soon (can't blame her) and I do not want to deal with an agency. I told mom that if this doesn't work then alternate living arrangements would need to be made (hoping this would work- which it hasn't). With all that I already have to deal with, I should not have to put up with this. I am giving my time, my energy, and my finances for her with no other help. If I can I am to the point where I would be willing to make her a ward of the state, since no one is power of attorney nor guardian just to get out of this. Although I don't think she would last in a facility, she is requiring more and more care.
I feel helpless and like my life is slowly going down the toilet. Has anyone else dealt with something like this?
You're not helpless. Find out more about possible facilities before you decide they're not an option.
Do not threaten to move your mother out but rather start researching facilities, tour them by yourself or with a trusted friend, choose two to tour with your mother, pick one, and set a move date. Meanwhile, stand up for the aide the next time your mother is verbally abusive with a swift: "Mother, you will not talk to NAME that way!" Perhaps that will make the aide feel appreciated enough to stick around until your mother moves out.
And knowing this, You shouldn’t BE putting up with this.
My whole family thought my mother wouldn’t last in residential care, but instead, she lived 5 1/2 of the BEST years of her last 30.
Start investigating your LEGAL responsibilities if you decide to make her a state ward. JUST GOOGLING will be empowering and fortifying to you as you make your way through the process of caring for your mother AND FOR YOURSELF.
Your image of “life is slowly going down the toilet” is tragically apt. When MY mother’s care pushed me to that point in our lives, I referred to that as “spinning”.
I was drowning myself at the time in all the “what ifs”, and they’d circle me and strangle me and leave me feeling there was no way out. BUT THERE WAS!
Do your research, find the best residential placement accessible to her, and MOVE FORWARD. You will make a respectful decision regarding your mother’s care, and your life will resume a pattern more like what it was previously.
And you RICHLY DESERVE IT.
We are not all Caregivers. I agree, start looking for LTC facilities and get her placed with Medicaid footing the bill.
Remember: this wasn't placed on you. You accepted it. Now you can change it -- and not feel guilty. May you have peace in your heart!
There is another way. You maintain POA and stay in charge of her health care decisions and her finances. Hire a few caregivers to work in shifts to cover the 24 hour day. This way no one has to live with her and the abusive behavior will be limited. Multiple caregivers will handle it better than just one.
I had a elderly homecare client with LBD. In the beginning I was the only caregiver because her husband was still living and was able to do for her at night. When he passed away she needed to have a caregiver there 24 hours a day since by then she was unable to walk or stand, was totally incontinent and diaper dependent. So, I brought in two others and one who stayed and did the whole week-end. All of us did not get the same pay either, because all the work wasn't the same. I brought in the 3rd shift worker for 'sleep pay'. All she had to do was go to bed at 11pm when she arrived and then check on the client a few times in the overnight and do a diaper change if it was necessary. Her pay was low. The 2nd shifter pretty much only did feeding, some pre-arranged meds, supper, and companionship. She earned a little more. I made the most because I was the 1st shift and had to handle all of her daytime care along with all of her medications, the housekeeping, laundry and making sure the house was stocked with groceries and the supplies we used for her care. This worked well for several years.
The client's behavior was impossible when I was the only caregiver. I was able to handle it because I didn't have to live there. I went home at night and didn't work week-ends. When 24-hour care becomes necessary for a difficult client, I don't recommend a family rely on only one caregiver who lives with the person. It sounds to me like your situation is high-risk for potential elder abuse. You've had your home and your life taken over. No one can maintain the patience level necessary to properly and safely care for someone in your mother's condition and not be able to go home, because your situation is home. You've got caregiver burnout, my friend. In cases like yours elder abuse happens easily. Like a backhand across the face if the elder gets too mouthy or fussy. Or a rough shove when they won't shower. Or leaving them in a soiled diaper because you just can't bring yourself to change them one more time. All this can happen fast when it's you 24/7 and there's nowhere to go.
Hiring a few caregivers could be a real possibility for you that could work. Look for potential caregivers on a 'care' website (you know which one I'm talking about). Or there are agencies that us caregivers use to find private assignments. How those work is that the caregiver pays a finder's fee to the agency, and that's where the agency's involvement ends. Maybe this would work for you and your mom too.
There also the option of placing her in a nursing home/LTC. You can do it. The state doesn't have to be involved. Talk to your siblings. If they're not willing to help, there's always the option of an ER dump and the hospital will place her in LTC.
My 96 yr old Dad has his and a very short term memory like 5 minutes.
He will have outbursts but it's usually because of a Caregiver's action. Like hurrying him when he's eating because he takes up to an hour and he feeds himself and always ask what do I do next which all you have to say is get some food, put it in your mouth, chew and swallow. I've seen them grab tge spoon out of his hand and put food on it then shove the utensil back in my Dad's hand and it bothers my Dad when all the Caregiver needs to do is just sit at the table and tell him what to do and let him take his time.
My 96 yr old Dad has very dry and thin skin that will itch so I have tgen put coconut oil on him once a day but some of the Caregivers are very rough with him and rub him way too hard and fast.
People with Dementia need to be told what is going to happen before and while it's happening, not just have someone grab at them to make them sit down or grab at a hand to make them stop doing something, ect.
My Dad can't remember what happens to be able to tell on a Caregiver and I would see bruises that were always said my Dad did it to himself.
My Dad doesn't eat much like old people and will ask for a snack every couple hours which they would just ignore him and not even answer him.
Anyway, I had Nest Cameras installed in my Dad's house and can watch 24 7 so now I know what really goes on and can be an Advocate for my Dad.
I can sleep better now since I'm able to call the Caregivers on things I see them doing and not doing and people do a little better when they know their are cameras.
Care giving is hard and you will get burned out unless you have help.
Speak with your mom and Caregiver and let your mom fully understand that if you lose the Caregiver that helps then she will have to go to a home to live.
You should get the Nest Cameras and put in areas where your mom usually is.
They are not hard to install.
Prayers
We go through a care company for aides and some weeks we have as many as 5 different care givers. She cannot remember any of their names if they are away from her more then 2 days which is all but one of them.
With her dementia, she forgets a question many times before she can answer it. I get so frustrated because she cries many hours a day, but when I ask what is wrong, she doesn't reply. I try multiple yes/no questions to no avail.
She also is bipolar and she has never had any reasoning ability as when she would "go to the store" and be gone for hours on end. I would ask her how she would feel if I did the same thing, she would reply " I don't know because I know you wouldn't do that to me". I still don't know if she doesn't answer my questions because she can comprehend what I am saying or just to get under my collar.
Dementia is a terrible disease as is any mental disorder, because it is impossible to understand how their mind is working(or not working).
I try to be patient with her, but sometime it is very haard to accept what is happening to her.
She no longer has a say in her care.
If she did not have dementia you could explain to her that she has to treat the caregivers with some respect and not abuse them or you would have no option but to place her in Memory Care. BUT she can not reason, she can not understand "Actions = Consequences"
Many caregivers that care for people with dementia understand the outbursts and can deal. BUT when it is one caregiver in your home it is difficult to "get away" for a break. In a facility there are many caregivers so they can take turns.
I am wondering is your m om on any antianxiety medications that might help her deal with a caregiver more easily? If not it might be something that you would want to talk to her doctor about.
I would have a family meeting, preferably with an Eldercare Attorney and discuss your wanting to make her ward of the state. There might be another sibling that would want to take on Guardianship.
All of this should not be on you alone.
She's either chased off or fired all CG's..none of whom lasted a single 'shift'.
Sadly, she's now in the position that she really cannot live alone. DH is her POA and he really should look into having that enacted and placing her in a facility. He won't. not ever, so poor SIL is running to MIL's on basically a full time basis. She's burning out--quickly. The other day she told me she's just 'waiting' for the fall that puts her back in the hospital and then they can go from there. The opportunity to place her last year coincided with COVID--so she had to go home.
SIL reports she can barely walk and has chairs and such in a pattern around her house so she can 'walk' between those and the kitchen counter. She is supposed to use a walker, but thinks it makes her look old. (She's 90, she IS old) and so she just creeps around all day. Falling is just a certainty.
DH said after his next trip (6 weeks) he is going to her house and putting up grab bars all over the place. That will look lovely, right?
He won't but that was his response when I mentioned to him I was worried about his SISTER.
It's a sad. cautionary tale. Don't chase off all the people in your life who would come to your aid when you need them. She has literally 2 neighbors who check on her, but they're lesbians so she won't answer the door to them. (Ugh. That's a whole other deal--her bigotry!)
She takes Valium, as needed, but it makes her dopey and a fall risk, so we're stuck between a rock and a hard place.
Most people who have worked in longterm care understand this type of personality. More than likely she has rhino hide by now and just ignores the comments. Apologize, in front of mom, for mom's nasty behavior. You might even say, in front of mom, you can't understand why she wants to be so mean to the only people who are trying to help her stay in her home. As I said before, if this is because of dementia or other ailment, it's useless to say these things or to correct her because you're dealing with a broken brain. And CG has certainly seen that before
Important to realize that reactions are from:
* Fear
* Confusion
* Depression
* Embarrassment
* Anxiety / stressors
* Dementia
- Best to tell the caregiver that this may / will happen (and not take it personally)
- Some, if not many, experienced caregivers are familiar with this behavior. Truth is, some can handle it, some have to (for income, as I did), and some don't want to deal with it, and some do not have to (they can find another position / job with a more congenial client).
- Tell the caregiver how much YOU APPRECIATE her and support her emotionally to realize what a service she is doing to a vulnerable, frightened woman, who doesn't realize what she is saying / doing.
This certainly is not an easy position / situation to be in. If a care provider can understand it is BRAIN CHEMISTRY and not the person talking, knowing they cannot help it, compassion kicks in and overrides the client's behavior - and reactions. I worked at a residential retirement home and had a couple of heart-to-heart talks with the social worker - to help me figure out how to deal with it (the rage, the vile rage - which my client felt towards herself and her disabilities; I was the closest person to this client so got both barrels almost daily 4-5 days/week. I ended up giving her 'time-outs' which actually helped - from 10 minutes to the rest of the day. If I just went out in the hallway and talked to someone to shift my feelings, it helped. I realize your caregiver cannot simply leave (although perhaps they could). I often had to take a short break and my professionalism and ethics would kick in and I would go back. This was my 101 boot camp caregiving training. I've never experienced anything like it since (over the last 6-8+ years). As well, I've learned more so how to deal with it.
Try to look on it objectively not guiltily - it is not a case of not doing what is best for her, or not caring / loving, it is a case of unfortunate need, and that means need for you both. Hugs to you - be fair to yourself - this illness goes through stages, the only thing it doesn't do is get any better.