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NamelessVirtue Asked December 2020

My Mum is deteriorating fast, am I wrong to blame her?

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?

Daughterof1930 Dec 2020
Your mother needs caregiver help other than you. Her needs are too much for you to do it all. It’s not your fault that this is true. Be honest with your parents about this, they need to get more help for her. And you need to go back to being their adult child, not the help
Beatty Dec 2020
Your reply should be a permanent resource on the forum.

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 ☺️
AnnReid Dec 2020
I’m not sure that what you’re doing is “the best” for your mom, and it’s pretty obvious that it definitely isn’t “the best” for you.

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......
NamelessVirtue Dec 2020
I think it would be fair to say that. She is, but my Dad only works part-time to minimize the time she's alone, and takes extra shifts at the weekend when I'm not working.

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

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cwillie Dec 2020
You don't say what your mom's disease is or the prognosis but it sounds as though it is something progressive that she isn't likely to recover from. Perhaps she would be better if she would make the choice to fight, but sometimes when we've been kicked so low the battle seems pointless and impossible, especially if in the end you are only buying time. Personally I get a little bit ticked off at all the attention paid to those individuals who do "extraordinary" things despite their extreme age or physical or mental limitations, they can become an accusation to the "ordinary" people who don't measure up.

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.
NamelessVirtue Dec 2020
It's called M.E.R.R.F (mitochondrial epilepsy with red ragged fibers) she used to have lots of fits when she was younger. Because of the fibers, her mitochondria don't use/create energy the way that they should, a lot of it gets dispersed beforehand.

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
AlvaDeer Dec 2020
How your mother chooses to address, handle the chronic (I am guessing) depression of a debilitating disease that will take her down lower and lower until she is robbed of everything, must be her own choices.
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.
Sendhelp Dec 2020
You are right Alva.

This is your one life!

What an encouragement to all!
Beatty Dec 2020
"I am expected.."

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.
NamelessVirtue Dec 2020
Mostly Mum (like 9/10), but a small part from Dad and myself especially when he's at work on the weekends.

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
NYDaughterInLaw Dec 2020
I don't believe you are wrong for blaming your mother for her rapid deterioration.
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.
NamelessVirtue Dec 2020
Your MIL sounds like a good patient to have. I'm lucky if I get thanked, let alone apologised to, if what I'm doing has to be interrupted. This has included Zoom classes this year during my apprenticeship (which I have now completed)

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
Countrymouse Dec 2020
No. Not right.

Are you in the UK?
NamelessVirtue Dec 2020
Yes UK
JennaRose Dec 2020
I can only talk about my own personal experience when I had chronic lyme disease which was not my fault. If anyone blamed me for getting sick that was their problem not mine. Years later I became better with no help from anyone since they didn't know what to say or do. Maybe I had a better attitude compared to your Mom, I don't know. I just know that I had to find answers to my illness and after 5 years I did. My husband at that time blamed me for getting sick and I ended up kicking him out as he caused me more stress which I didn't need.

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
NamelessVirtue Dec 2020
Thank you, I think that's what I need to do a lot of, just vent.
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
cwillie Dec 2020
Good morning NV, I hope that you and your family can find at least a little bit of joy on this special day. It is so very difficult to have to "parent" our parents, to be the responsible ones, and to have to experience this at such a young age must be doubly difficult. Looking back at my own experiences I think that constantly trying to swim upstream trying to make things work and happen that everyone else resists was just not worth it in the long run - if your mom isn't willing/able to do it for herself then no amount of effort from you is going to matter, it's just going to wear you down. Give yourself permission to stop policing her actions, just do what is easiest. And then set boundaries for yourself, you shouldn't be at her beck and call, if she is unwilling to attempt any independence then she needs to accept the care you can give in the way and on the schedule that you set, because her choices, whether voluntary or not, have consequences. 🤗🤗🤗

Confounded Dec 2020
You mention your mum had 2 strokes.

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!
NamelessVirtue Dec 2020
Her personality hasn't changed that much - her siblings don't mention any change and she can hold a conversation like she used to, ableit with lots of "I can't hear you" etc.

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
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