My mum has a rare genetic mutation that has grown as she's gotten older. She's only 56 but can't walk without assistance and has grown deaf during her decrease of mobility.
As I live at home, I am expected to be a caregiver so that my dad can still work and pay bills.
Being a caregiver has seriously affected me -I don't have a social life outside of work, and I have to have special permission to keep my phone nearby in case she falls and needs assistance, which can jeapodize my role as phones are usually forbidden on site.
What's hardest is her arguing with me and my dad about what she should be doing and what we should do for her.
Her physiotherapist has given her exercises to do in order to retain her strength, but she refuses to do them and has now got to a point where she can't even dress herself.
She calls me the bad guy because I won't help her until she tries on her own.
My dad spent a lot of money to get her a specialized bed to help her get up but she doesn't use it in that way, it's down to us to get her up and be ready at her beck and call to do the tiniest things for her.
She's also had 2 strokes in the past year (one before Covid, one during) and I can't help but feel happy when she's in the hospital because I don't have the pressure of caring for her
I get so frustrated because this isn't the mum I grew up with, isn't the mum I started being a carer for, but I know that I should just do what I can for her, right?
I picked this out as I see how big this could be. Is this expectation coming from yourself, Dad, Mum or all of you?
What if you had a heart to heart with both your folks. Explained you care deeply but need to also make steps forward in your own life plans.
Can you work together to get a new plan with more caregivers to lighten your load?
If they are reasonable parents they will see that this problem does have other solutions. Finding out what care options Mum qualifies for would be a start. Many families get stuck in the *only family* rut but it's just not true.
Your Mum's care needs have increased & will increase more. So the care plan needs to adapt & increase too.
Covid has made it harder to organise care because her usual checkups have been halted so she can't get a proper assessment, especially with the current UK system of no household mixing
Would it be fair to say that at present, you’re doing TWO full time jobs, one of them unpaid? Is your mom left alone when you and your father are working? Is she able to manage to some degree when left by herself?
Would it be fair to observe that you are expected to serve as an adult when caring for your mom, but are treated as a naughty child? From experience, I will tell you that negotiating the restructuring from being the child to being co-adults, especially when a parent is ill, can be VERY tough, and sometimes, doesn’t ever happen.
You don’t say how old you are, or what your REAL job is, or any of your personal LIFE aspirations, and they’re SO important in the design of your future, and I’d love to know who YOU ARE.
In the interim, consider- she did not “make” you to be an unhappy servant, but that’s what you became as she grew sicker and more dependent. If she argues with you, what can you do to feel less stress YOURSELF when that happens. What will she do if you say “I’m going to choose not to argue with you about (whatever) and walk away from her.
At some point you will need to get your message across to both her and your dad, that the present system IS NOT working for you. Would it be possible for you to pre-plan any aspects of her daily routine, so that you can leave them for her to do?Can you ask her therapist if there is anything you can do to decrease fall risks or increase HER ability to deal with them?
Sometimes, habit and routine can actually overtake necessity and benefit, to the detriment of all involved. are there small ways in which the three of you could develop a better system? Even if you can’t implement new management methods, JUST considering A NEW WAY, however small, can be helpful
Come back and let us know how it’s going......
She can read, work the television, and go to the loo by herself, but we have to make sure that she has enough food and drink available, and she has an emergency call button if she falls
I do feel like a child, but she doesn't feel like a mother any more. A lot of our interaction is one-way. When I want to talk or discuss she conveniently can't hear me
I'm 22, have been caring since high school, and currently work in a specialist school. I am engaged but my fiancé still lives with his toxic parents, who won't let him visit while we're in lockdown. We're trying to save for our own place but it also feels wrong to want to move out when I'm being relied upon
If I walk away when we argue she'll just shout and scream until it's done her way, even if I'm delaying a request from her while I go to the bathroom
Are you in the UK?
As for yourself - you can't put your life on hold indefinitely and it is unfair for your parents to put that burden on you. Many of us have jumped in during a crisis only to find out the crisis never ended and at some point we have to change from crisis mode to long term planning, it sounds as though it's past time for you family to make that step.
I see what you mean, but at the same time it's like I'm trying to marry up the version of her that was, with the version of her that is.
Covid definitely hasn't helped, because household mixing is restricted. If we already had a carer that would be fine as a support bubble, but as we don't we're highly limited in whether we'll be able to set one up or not
No FOG or fluff but common sense! Said well.
Thankyou muchly for this light globe moment of clarity 💡💡
I have copied & pasted this into my pile of advice to read to myself as it suits my situation too ☺️
More importantly I worry about your choices. "I am expected to" just doesn't work. I am sorry. This is your one life. Unless I am wrong you aren't getting another. And you have a right to your own life. You must assert that right or CHOOSE to become a sacrifice to your Mother's disease. Her disease isn't her fault. Neither should it be your life sentence.
I suggest you get professional help. You are going to have to understand that, no matter the repercussions for your parents in their having to access the system (such as it is) ongoing, you will have now to live your own life.
I wish you luck. This will not be easy. Will you GRIEVE this choice (try to use that word ongoing rather than guilt; you aren't a felon)? Yes. Will you often be sad about what life has visited upon you ALL? Yes, is it not worth sadness, this dreadful prognosis? Of course it is.
Please seek help; please live your own life going forth.
This is your one life!
What an encouragement to all!
My MIL had a degenerative neurological disorder that robbed her of her ability to walk, talk, toilet herself, bathe herself, dress herself, feed herself, etc. Not once did she behave as does your mother. My MIL did her exercises every single day. She was patient with those who helped her. She handled her illness with grace and aplomb until the day she died.
What you are expected to do and what you *choose* to do are two different things. Your mother is not helping herself by refusing to use the special bed and not doing her exercises.
Your mother's needs are only going to increase. You are much too young to be enabling your parents to pretend that she can go on living at home. What your father chooses to do for his wife should not affect you to the point of it affecting your job and your future plans.
Both you and your fiancé must learn to be adults and establish healthy boundaries with your parents before getting married. Most religions offer marriage preparation courses. I urge you and your intended to stop focusing on what your respective parents want and start focusing on what you want. Good luck to you.
My dad's great about it. He is always willing to discuss me moving out and it very firm that my life is my own, but I'm not currently in a position to be able to afford a house, and my fiancé can't save because of the high rent his parents charge him to live at home and use the large car parking area they have.
I think that's a good idea, but I've not heard of it in my area, and we're not religious so a church based one isn't going to be the most comfortable for us
Quoting "To Kill a Mockingbird": Atticus said "you never know a man until you stand in his shoes and walk about in them"
Anyway, you don't know what your Mom really feels inside. Maybe she has given up.
We as caregivers need to do what we feel is right and what we are comfortable with. I take care of my elderly Mom and most of the time I feel good about it. Sure, caregiving is not an easy job and I would be lying if I said that everyday was a good one because it's not. There are days I would like to run away but those days pass and the next day is a good one. I know to take care of myself and give myself breaks.
This is a great forum to vent and let out those feelings.
Hang in there okay?
Jenna
I get what you mean - I did study to kill a mockingbird - but if I were in her shoes I'd still try you know?
I've had depression for a long time but I still take care of myself and do my job, alongside caring for her. Sometimes taking care of myself is just the bare basics (using mouthwash instead of brushing my teeth) but I still try, which is probably why I can't just accept that she is unable to do certain things nowadays
Strokes can (not always, but often) do a number on a person's altruistic and empathic abilities, ad on their judgment as well. If the person had little or none in the first place, well, those abilities are not likely to get any better, only worse.
Whether this is your mum's fault or completely caused by strokes - it does NOT mean you must give into the selfishness - not one bitty-bit. What it DOES mean, is that boundaries *must* be laid *and* enforced.
This actually helps your mum. If she'd formerly been altruistic and empathetic, this may (but only may) help her to regain those abilities to some degree. If she'd always been lacking, boundaries are still essential for you to coexist (if only during visits).
If your dad cannot, or will not, back you up - well, then - at age 22 you need to build your own life, in a space of your own.
If you are able to do this, it may prompt your dad to seek alternative solutions, such as residential placement (where she'll also have opportunities to socialize and do activities with others), or in-home care aides.
Wishing you the best!
She does sleep a lot more than she used to, sometimes until noon, but I'm not allowed that luxury. If she's up, I have to be up.
I think you may be right on the empathy thing though. She's not displayed a lot over the years, failing to validate my feelings when I would talk to her. Now the first words she normally says to me are "I need you to...." Or "can you...". No please, or anything about me or my day. If she asks about me it's normally along the lines of "Are you here or at [fiancés]?". This morning I didn't even get a Merry Christmas, just a series of demands.
Residential seems the way to go, but Covid has put a lot of strain on them. They'll definitely be something to look into in the future
Although I know it will be impossible for your dad to fully embrace YOUR NEEDS without placing himself in an emotionally vulnerable situation, laden with guilt for being unable to fully deal with your mom’s needs OR YOURS, you need to be able to talk your issues through with him, NOT as “daddy’s little girl” but as a young woman who is not able to juggle everything that she (SHE) feels expected to do.
If you are careful about picking your time (unfortunately NOT during the so-called holiday season), this could be good for you and for dad as well. Establish with him how much you miss the days when Mom was well and active in your life- most likely he has similar painful feelings.
Are you able to evaluate (for yourself) objectively how you and dad together an come up with a plan to give you SOME freedom away from caregiving?
Your PHONE thing, being perpetually tethered to potential catastrophic news.....just so terrible for you. Without any idea of the cost of emergency answering services in your part of the world, could that be considered for at least PART of your work day, so that you’d have a tiny little bit of freedom from THAT responsibility?
Little things, little freedoms, little pleasantries for yourself- they can add up to becoming something a little better than where you are now, AND YOU DESERVE THEM.
Oh, and this- since you KNOW your mom isn’t who she once was, it’s not only OK to compartmentalize unkind things she says, AND MENTALLY DISMISS THEM. Simply doing so can be very freeing. You have to work at it a bit, but you can DO IT. YOU know all you do for her, and for YOUR peace of mi pin d, focus on that rather than what she says.
Post again when you can.........
Dad's great to talk to but mum is always a touchy subject because while we do discuss we don't come up with a solution except for equipment to cater to her needs - specialised bed, stairlift, mobility scooters, help-me-up chair etc. Etc. I think he wants her to stay at home, where she at least does certain things herself, and she definitely wants to be at home because she's so resistant to going anywhere, especially hospital.
I know you're right but I've always been affected by people's comments towards me - I'm a people pleaser because I don't know how else to be