Hi all,
I've been living with and taking care of my mom for about 7 years now. I initially moved in for my own benefit (to save money for a year or two), but throughout that time, she's dealt with a lot of health issues and declined steadily. She stopped driving, she became dependent on a walker, and she's on dialysis. She's had a few injuries and other health issues over the last few years. During that time, my dad also spent about 8 months with some major health issues, so I was pulling double duty for a while. The last few years, since about 2018, have been especially difficult. I've given up any type of social life I had, I cut way back on work hours, I've canceled trips, etc.
Last year, my mom started to decline mentally a bit. I blame COVID mostly, because with all of her health issues, she hasn't been able to go anywhere and she's been on the verge of major depression and anxiety since she started dialysis. But then she developed a problem with her legs and ended up in the hospital for over a week. She came home unable to walk. That was seven months ago. At first, she refused physical therapy and in-home health. My dad and I have been providing all of her care. But then she started having another health issue and has been in and out of the hospital 8 times, in part, because she won't go to all of her follow-up appointments. I finally convinced her to go to some, but it continues to be an uphill battle. She has a nurse come in, but she makes me re-do her bandages after they leave. She has a physical therapist, but she doesn't try at all with it. We bought her a lift chair, but she said she can't use it. The PT even tried to help her figure it out but she wouldn't listen.
The reason I'm here is - I'm supposed to go out of town in a couple of weeks. Leaving the country. It's a trip I've spent thousands of dollars on and had planned for two years. I had to postpone last year because of COVID. I was supposed to go in April of this year, but my mom cried and begged and pleaded with me to postpone it until June so she'd have more time to prepare. So, I did. It cost thousands more dollars, and the friend who I'm traveling with was not amused because she had to rearrange her life, but we made it work.
We have a relative who will help during the weekends and evenings, but my mom is refusing professional help for the mornings and dialysis trips. She says my dad can do it, but he can't. She's finally come around to realizing she needs someone, but now the home health care agency we use doesn't have any aides available. I've contacted Visiting Angels, but I'm not sure I can afford that now because I've missed so much work over all of this.
But the worst part of it all is she treats me so badly now. She curses at me and threatens me and calls me names and told me she was kicking me out of her house. She keeps talking about how I'm abandoning her and she never thought I'd do that and she can only rely on herself now. She's also doing risky things - like she's not supposed to go down the ramp in her wheelchair solo because she nearly flips it over, but she does it anyway. I just don't know what to do. I'm gonna be miserable if I go and miserable if I don't. I haven't had a single break in years, and I'm experiencing major burnout. We've always had a good close relationship, but I can't stand to be around her now and all she does is berate me when we are. I don't know what to do.
Go on your trip. Leave the contact information for all the "help" with your dad and let him manage mom's moods.
In your shoes, I would get mom to a geriatric psychiatrist for evaluation. She needs meds for her agitation, anxiety and depression.
I think going to see a therapist would be a GREAT idea for you. You need to learn how to set some healthy boundaries.
I've always hated for her to be mad at me, so this definitely something I need to work on. But I am also to a point where she wakes me up every morning to go to the bathroom. I have to stay up and wait for her to go to the bathroom at night for the last time, and then I have to work before I can go to bed because I don't have time to get it all done during the day. And we go to dialysis at 4 a.m., so I can't get the sleep I need beforehand. I just feel like I have no control over my own life. My dad told me he felt the same way yesterday. It's just tough.
Go have some fun. Go spend time with people you own age. Go see, feel, do something new & exciting.
Work out an action plan with Dad before you go (eg neighbour/friend for minor, EMS for major). Then you can have more trust & hopefully resist checking your phone a lot while away.
Physical distance & time away can be the BEST remedy. Give a fresh perspective when you return too.
Your Mom can tantrum as she will. Her feelings are HERS to feel. Go anyway.
"I just feel like I have no control over my own life. My Dad told me he felt the same way yesterday".
Aging, illness, pain are things out of your Mom's control.
Some mellow personalities just go with the flow in their old age or illness, maybe get described as *gracious*.
Others try to keep control of their life, which can spill into trying to control the people in their life too. Maybe called *fiesty*. But sometimes you have to call it how it is *selfish*. Their world shrinks to just their own needs. Sounds like that is where your Mom is.
When you are ready, start thinking about how much you want to do. Then the task of setting a whole lot of new boundaries can begin.
She is intentionally being manipulative and you need to stop buying into it.
If she injures herself with her antics, she did it. She will be in the hospital and dad will get a break as well.
Walk away when she starts her bull. She is behaving like a spoiled child and should not be entertained when she is acting out.
But overall it does seem to me that you are looking either to BE the 24/7 caregiver or you are looking at the need of placement of your folks, or a move out and encouraging their independence rather than their dependence. This has likely been coming for a long time, and now is on the doorstep. I know that you know there is no easy answer, no answer that will be without grief and without a lot of work and worry on your part, but the decisions on how to move forward now really don't belong to your Mom and Dad IF they are unable to be without 24/7 care as you describe them.
I am so sorry. It is probably the trip that has brought to a head the fact that this has come on your so fast you didn't really understand where it all stood. There just is no easy fixit to this. You have decisions to make whether you can arrange care while you go on this trip or not. Those decisions will be waiting for you on your return.
Even the sacrifice of years ahead is not going to make this go well. I fear you are looking at placement or sacrificing your own life. If you feel you need professional advice to comb out the options going forward do consider licensed Social Worker trained specifically in counseling on life transitions. I wish you the best of luck.
Your starting point now or when you come back from this trip is a complete assessment of your Mom and Dad, their mental and physical health and if they can or cannot be alone. At this point you cannot even know how much of this is real disability and how much of it is the fact that they have been enabled to be completely dependent on you. There is lots of work to do to find out what's going on.
I have no energy and a lot less time to do the things I planned to do before I go out of town (I was going to clean some things, mow the lawn, clean the pool, etc. so they wouldn't have to worry about them while I was gone), my dad is now getting depressed (with physical symptoms), and my mom, while she has calmed a little, continues to make snide rude comments about how much I'm hurting her and how I'll regret it one day and she'll probably die while I'm gone and how her life has been so bad and I'm the one person she thought would never abandon her and so on... This is so not my mom's personality. I've never seen her so hateful, and it's so hard not to take it personally, but it's bordering on mental abuse at this point.
Thanks to your advice and after talking to some friends, I am going to go on the trip, and I'm just hoping I can enjoy myself. I've lined up more neighbors and relatives to help out, and I'm hoping I can get Visiting Angels in for her morning bathroom time - that should cover most everything. I don't know how they work exactly, and I can't seem to stop playing phone tag with them this weekend. My dad will be in charge of most everything - he just can't lift her on his own and can't seem to reason with her nasty attitude lately either.
As for moving out of their house, that's already on the agenda for when I return, though I'm just moving next door. It was actually supposed to happen in 2019, but the house I was buying fell through when the owners decided not to sell. The house I'm moving into needs a lot of work, so I hope to start on that in July/August.
I did ask my mom if she'd be willing to see someone about her mental health when I get back into town, and she said maybe...but later she got mad at me and told me I was the one who needed to go to a psychiatrist. Sigh. I just hope she calms down some when we get it all situated. I am trying not to talk to her about the trip, but she brings it up or my dad does and all heck breaks loose.
I've dedicated a large portion of my 30s to taking care of her, and now I'm in my late 30s and I'd still like to have a family and things like that...if I don't get moving, I'll run out of time. I just wish she could see this as clearly as she did even a year ago.
Anyway, thanks again!
You can’t change your parents. You can decide what is acceptable and what is not. Implementing new stipulations in your relationship will help enormously.
Best wishes to you and your family.
Of course, all of this ‘talk’ came from people that NEVER cared for their parents. When I was polite and said nothing back to them, I thought to myself that they were ignorant and extremely annoying! If I did say something to them, I was told that I ought to be ashamed of myself for feeling as I did.
I was burned out like you are. No one knows how you feel unless they have done caregiving themselves. Honestly, they don’t have a freaking clue! The truth is that none of us realize how hard caregiving will eventually become in a long term situation. We can get through most things if we know it’s only temporary. When we don’t see an end in sight we feel overwhelmed.
Trust me, I feel your pain and it really is necessary to have regular breaks when caregiving. I agree with Alva, it sounds as if your mom needs more care than she has now and I don’t know how much more you can give. You’re stretching your time now. It’s not working out for any of you.
Start researching what else is available. Call Council on Aging or a social worker to help you plan for her future care. I know that you want to save money but find another way to save. There was a time in my youth that I worked two jobs and had three roommates in order to pay for rent and school. It wasn’t easy but I made it work.
It’s really depressing when you are doing all that you can and a parent feels like you don’t deserve any time for yourself. I think that the more we do, the more dependent on us they become. When we are in the middle of it all, we don’t always think clearly. We don’t realize how much we are contributing to the problem.
It took a therapist to help me see what I was doing in my life that actually hurt not only myself and my family (husband and children) but also my mom because I taught her to rely solely on me. She developed anxiety and depression. She became fearful of the unknown. I regret how I handled it but due to unexpected circumstances, I took her in or she would have been homeless. I should have made it a temporary solution though instead of a permanent one.
Underneath it all, she truly did not want to be a burden on me. I felt responsible for her. Many of us become confused about what we should do in trying circumstances. It’s emotionally and physically draining.
We don’t want to see the possibility of things getting worse, and they will always get worse when a parent has serious health issues. As you say, even if we have a good relationship with happy memories, it all changes when we become a full time caregiver and trying to live our lives too. It’s just too much for anyone to handle.
Have you considered an assisted living facility for respite care? It’s not cheap. I don’t know what your parent’s budget is but they have shuttle buses that take residents to appointments. Our Council on Aging also has shuttle buses that transport the elderly to appointments.
I hope you get to take your trip and I am sorry that your mom is mistreating you. She might not even realize it. People always take out their frustrations on the ones closest to them. They wouldn’t dare treat a stranger that way. She feels safe with you. I am not saying that this behavior is right or that you should tolerate it. You have to decide what you will and will not accept from her. There are some things that you may decide to give her a free pass on and other things that you are not willing to accept at all.
Wishing you and your family peace during this stressful time in your lives.
You sound like a very kind, compliant, overly involved adult/child who has taken on a situation that was manageable and actually mutually somewhat beneficial earlier on, but now is definitely not.
As often happens, the more dependence we allow someone to assume, the more they may sink into that dependence themselves.
Since you’re now in the “….damned if I do and damned if I don’t….” hole, it’s time to at least temporarily go ahead and put yourself first.
Your “nap story” illustrates the fact that you yourself are falling into the caregiving “sacrifice ALL for a moment of peace” rut.
You needed a nap because you only get two hours of sleep the night before dialysis but your mother gave you an order and called you names so that…… on and on and on and on and……..vicious cycle.
YOU COUNT. Successful caregiving ALWAYS requires an awareness that BALANCE is a part of it.
For starters, can you start doing the FIFTEEN. MINUTE WALK AWAY? NO, You can’t do that? Then how about Ten? Seven?
I repeat- YOU COUNT.
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