I'm 57 and moved in with my parents at the end of Dec. 2012 when I lost my job and home. Since then I have somehow taken on the task of Caregiver. My dad is 84, almost completely deaf, can hardly walk and gets frustrated and inpatient all the time. Which I would expect being he's in pain all the time. However, my mother on the other hand is really testing our patience. She wouldn't let anyone come to the house to help out as she feels she and I could do what needs to be done. My brother finally convinced her to get maid service. He said he would pay for it. Before you say have my brother talk to her, he is not one to listen to a sibling and chews me out.
Mom suffers with severe back pain and gets epidural shots. However, they don't work because she is supposed to take it easy for a few days but she goes straight to work picking up heavy items and running errands all over the place. Then she gets upset and starts crying because it hurts her to do the smallest task. I started having physical problems after I moved in here. I've had a knee replaced in 2015, a hip replaced in 2016 and now I'm having injections in my back to stop the pain in my upper thighs stemming from the nerves in my back. When I had my hip surgery, I wasn't able to fully recuperate like I should have as she made me feel guilty that she was having to do the chores around the house. So I got out of bed and started trying to do things which only aggravated my hip. In April 2017, I was scheduled to have an epidural when a couple of days before I found I couldn't move my right leg without screaming in pain. I literally couldn't walk on it. I believe it was from doing too much for my mom. She is starting to get confused and mixing up paying her bills to the wrong companies and losing paperwork I give her. She says things and then tells me I'm losing it when I tell her she never told me. I'm considering filing for disability benefits for myself and moving out.
My brother has a lot of money. Maybe he can convince her to get a Caregiver. I don't know what to do. I'm confused because my dad doesn't want me to leave but he sees how mom is treating both of us. I told him it usually takes 24 months to get benefits if any so he shouldn't worry. I think this is his last year with us. But mom who thinks more of how things look rather than care about the person told him to make his bed because she doesn't like how the maids do it. Who cares? He can't do it. If the edges aren't tucked in nice and neat who gives a flip. I care more for my dad then that stupid bed. Needless to say, I made the bed with a heavy mattress. My mom is so messed up with her priorities. As you can tell, I'm so stressed out I don't know if I'm coming or going. What do you think I should do? Should I file for disability benefits to move out which would take a year or two so I'll be here for dad or stop doing heavy jobs and if she chooses to do them then she pays the price? Which I think would be mean of me, but I can't do them and she won't accept help. She has me moving all my stuff into storage because it's just sitting there and she wants her place clean. I practically have moved everything out and feel unwelcomed unless she needs me. Please any suggestions will be more than welcomed.
Start making plans to move out on your own.
Very often it isn't about impressing the neighbors- it's about control. And more than likely, the more your mother loses control of your fathers health, her ability to move furniture and the loss of her own mind - she will become more and more obsessed with cleaning and folding etc. So fasten your seatbelt and get going on getting out. As you've said - gaining disability benefits takes time - so you'll likely be able to spare your father some grief via The Cleaning Nazi and spend time with him now. But don't forget to protect yourself as well. Practice saying "No, mom. I'm not going to risk further injury to my back".
Also what you are describing to me sounds like the behavior of someone who just feels comfortable having her home maintained a certain way. It is really hard not to be able to do things the way you want to, as you undoubtedly know from your injury. I would try to cut your mom a little slack. Reading between the lines, it doesn't sound like your caregiving has been a one way street. It sounds like your parents were there for you when you needed them, both in terms of providing you with a home (and storage) as well as care after your surgeries. Do you think maybe your mom is worn out and just wants to feel like she has her own home back?
In just a little while from now:
1) Your Dad will need to be placed
2) You will need to call APS on your way out the door, to get help for Mom, and save yourself.
This is just one person's opinion. Others will have much better advice, I am sure.
Will be checking back in with you in about 3 months.
While you are still living there, here are some suggestions:
*Try to take over all the bills and whatnot - put the paperwork somewhere that she will not find them. If you have DPOA, try to get the billing addressed to YOU.
* Moving stuff around - if she is moving them to clean, try to use the cleaning service - have her make a list of things she wants to move.
* Gently remind her that as painful as it is for her to move things, it is for you as well.
* Do NOT argue with anything she says - this is not easy, but just agree, say you forgot, even though perhaps she never said it, and ask her to remind you again or write down what she wants/needs done. If she has early dementia, you CANNOT reason with her and it is pointless to argue - this only exacerbates the issues and accomplishes nothing.
* Bring in additional help if needed, but just say it is a friend you have asked to help YOU not her... little white lies...
* Attempt to redirect focus to something else if at all possible, hopefully there is *something* she enjoys that you can focus on....
Please don't think all of her behavior is a reflection on you. People with early stages of dementia do not realize what they are doing or saying and can forget it in an instant. Again, it is painful and hurtful sometimes, but if you can learn to not react, it will lessen the stress for you. None of us lived with or had mother live with us, and I had already told my brothers that I could not do that - she was also previously somewhat negative, opinionated and could *really* get my goat, but getting advise from the personal aide service on how to deal with this, and my own research into dementia has helped me tremendously to understand and not be provoked or irritated by her behavior and/or words. This was also useful later when it became more obvious to my brothers, allowing me to share the things I learned.
You really should get some in-home assistance with your father. Again, lie to mom and just say you needed a "friends'" help - she does not need to know it is hired help (but get them on board with the situation!). Just an hour or so per day to assist with getting him up, bathed, dressed - any of the physical help and even to work with him. Our mom if deaf in one ear, has trouble in the other even with the hearing aid. It may take multiple attempts to find the *right* person or people for this task, but it will be worth it.
Back to what seems to be OCD behavior - if she is just moving things around to move them, not for cleaning, this could also be signs of dementia. In particular if this occurs later in the day, like late afternoon or early evening, no question. But, although our mother did not seem to display this OCD, she did develop what is called "sun-downing". We had cameras in place and observed her brand of OCD, which was to check the door lock, the sidelights, the kitchen, the LR - the camera does not extend into the kitchen area or the LR, so it was not until older brother was up for a visit that we discovered it was the DISHWASHER she was checking in the kitchen (it puzzled me for a long time!). This started out a few times a week per night and eventually became a marathon hour to hour and a half of the checking, over and over - I had to turn the sound off on my phone because I would get two alerts for each trip (one camera trip, one email after the short record) - AUGH - it would drive me nuts! Drove my older brother nuts too, and he would call her - I had to coach him on this - it does not help because she does not know she is doing this! TURN.OFF.THE.PHONE.SOUND!!! My phone would still make a light bzzt bzzt sound, that I might or might not hear, but it was only at night, for that period and the bzzt would let me know she's still up and about!
So, hopefully you can figure out what is really going on, and perhaps try some of the tricks. Certainly do some more research to see if this really is signs of dementia. Apply for the disability yourself, and perhaps THAT will pay for services to come in to help you and you can just tell mom YOU need the help. If there are any senior services in your area, see if there are any suggestions or help they can suggest and/or provide.
So you have back issues, and you're the Daughter Slave doing your mother's bidding. Stop! Don't you care about your own health?
I do understand the desire to just do what your mother wants to shut her up and prevent verbal abuse. I do this sometimes, and I'm only around my mother a few times a week (sometimes only once a week). But I will not do any of her housekeeping, and I will never help her with personal hygiene. It's the little obsessive orders that I struggle with sometimes.
I understand it's all about loss of control. My mother's world has narrowed greatly. (She's going to be 91 this summer, can't see out of one eye, has bad balance issues, neuropathy, atrial fibrillation. She lives alone. She has yet to hire a housekeeper.) I just don't like being dragged into her narrowed world. And I'm the only one of four siblings who is expected to share her world.
My grandparents were incredibly stubborn. As their needs increased, the work did too, but the conflict lessened. Sometimes you just have to wait till they "tire out" and see for themselves that they need help. We had more success when we phrased things like "It would really help us if you let this lady come over and help around the house." But that only works so many times and we weren't living with them. It does kind of consume you and it gets to be hard to see your own life functioning in a "normal" way. If you think this could go for years, maybe it's a good idea to look into getting out so that you can at least see if you'd feel better on your own. Stress is terrible for chronic pain.
I am sorry again.
Dementia is frustrating, priorities are out the window, fixating on stuff that does not matter or is critical ✅ driving anyone within earshot nuts until these things are done ✅ confusion with bills and critical thinking ✅ stubborness with change and getting outside help ✅ all these things are pretty typical and that is just a fraction of other fun things that come with dementia.
Try to resist hurting yourself no matter how she goes on and on about what she needs, you need to tell her you are not willing to compromise your own physical well being just so she can have her perfect hospital corner tucked bed. Ask her if that matters more than your own health and recovery. You may have to say that same sentence over and over but resist. I know it's hard, believe me, but I have a bad back and when I let her passive aggressively nag me into doing things that will aggravate my lower back, I always end up in pain for days. The difference is, she lives "next to me in an inlaw unit", I am not under the same roof 24/7 or I would be divorced and most likely in the looney bin. I have an escape place even though she is only steps away from me.
I know a little of what you are going through. I'm disabled and have been the sole caregiver of my dad for the last 10 years. (He has 2 other kids) A surgery on my neck (after a wreck) made my problems so bad I had to quit work. Still suffering with neck and back issues 17 yrs later. At 42 yrs of age I had to quit work and apply for disability. Unless regulations changed, you only have 2 years after you quit your job to apply. Be ready for a long drawn out process. I was denied 4 times. I hired an attorney that handles nothing but disability claims. I quit work in 2001 and got my first disability payment in 2006! Had to go before a judge and an occupational expert but I was found to be 100% permanently disabled. I worked in a very good industry for 24 years and a high paying job the last 10 years and I'm getting the max allowed under disability but it would be tough to live on solely. I want you to have this info because applying for disability while being the sole caregiver will no doubt double your anxiety, frustration, patience and test your limits.
So get an attorney (that handles only disability claims) and let them do all the leg work for you. Then talk to your parents doctor and get info on as many resources as you can for you parents. Get your siblings involved. Just because you are living there now, doesn't mean you automatically win the title of caregiver forever!! Good luck and let me know if you have questions.
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