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.
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.
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!
We are not all Caregivers. I agree, start looking for LTC facilities and get her placed with Medicaid footing the bill.
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.
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