Follow
Share

Back again. I had posted two previous topics in the last months about my mom suddenly coming down with what seemed like dementia/another stroke (after having had one in 2012, paralyzed entire left side of her body) and me, and practically only me, having been her caretaker 24/7 the past 5 years.


Finally got her to the hospital and sorted out, got her to a rehab center. Everything went/was going well, even the whole having to be there for Christmas issue. Most of my family showed up and spent a few hours with her to the point she got so overwhelmed after about 2 hours she said we could go and she wanted to get some rest (completely unlike her, normally she'd be bargaining with some of us to stay/get her out) so it went a lot better than expected and thought she was getting more comfortable there. Plus it probably helped that I've been there pretty much every single day/night until around 9 - 10pm since she's been in this condition/recovery.


Fast-forward about a week ago, she's gotten significantly better but still seems like she can't stand or sit up on her own properly (she did this stuff perfectly before she got sick, was even able to transfer herself from bed to chair and such half the time.) According to her worker a lot of the more demanding therapy (the stuff that would get her to stand and such again) she was refusing to do so they discontinued it, and said she's still on RNA (bed-related therapy) but believe she's gotten as good as/far as she can with it.


Case worker wants to discharge her in the next month but the question is where. Right now we're weighing our options, talking to family, and deciding if it's going to be home or in some facility. Obviously, the initial plan and what we wanted was to get her home but if she can't stand or do even half the things she did before I don't know how I can. I honestly don't know if I can still lift/help her up at the point (I'm worried and guessing it's most likely a no, since the nurses seem to have a hard time doing it as a group) I was at my limits taking care of her on my own before with her slight independence, I have no idea how I'll be able to with her still current weakness and being in bed majority of the time, I'm not even strong even to turn her on my own to make sure she doesn't get any bed-related illness if that is the case.


And now it seems like it's all coming down to me, basically an ultimatum from everyone including my family: Well if you want to try and take care of her in this condition (me, by myself) then she can go home otherwise no.


I don't know what to do and am emotionally and mentally destroyed by it all, of course I'd want to take her home but not if my ability to take care of her is now severely limited. On top of it I went to see a Dr for my chronic, daily back pain where I wake up in excruciating pain every morning (had it about 3 years now, finally had the time to go with her currently in PT) and I haven't gone to see any specialist to confirm but it doesn't sound good, including no lifting over 20lbs while this all gets sorted as to not risk further damage.


I've never wanted her to be unhappy or in a home, that's why I've given up my entire life thus far to take care of her, but it seems like it's gotten to a point that I PHYSICALLY cannot do it anymore. I haven't and don't know how I'd even begin to tell her I can't take care of her anymore. The affect it's having on my health is no help, constant anxiety/feeling like I'm going to have panic attack when I even consider it, wanting to turn to drinking (never been a drinker, have barely ever touched alcohol in my life) just to get some kind of escape from the horrific emotion and mental toll it's taking on me. I feel like I'm going absolutely insane, and we (or I guess I) haven't even come to a decision yet.


I don't understand how anyone is able to come/make this decision, how they're able to handle it, because I haven't even made it yet and feels like it's already about to cause my death.

ExtremelyTired -

You are feeling guilt. Understandable. Most of us here have that same guilt, too.

Take a moment and think whether your mother feels any guilt for ruining your life, for manipulating you into becoming her caregiver since you were a TEEN. Any parent who is worth that title will tell you it's the parent's job to raise the kids until they can fly the coop to become independent healthy adults.

Do you think she feels any guilt? I doubt she ever stops and gives a thought about your life. It's all about her and how you can serve her.

Your mother has been cannibalizing her young so she can live. She'll keep doing that until you drop dead.

And you feel guilt?
Helpful Answer (18)
Reply to polarbear
Report
Shell38314 Jan 16, 2019
Couldn't have said it better!!!
(6)
Report
See 1 more reply
Extremely Tired; at what point will you EVER be able to give up the physical care of your mom? What if your back trouble is bad? Surgery? (God forbid!). What if she gets suddenly worse? Is incontinent?

If your family is in agreement right now on getting her more help than you can do for her, isn't that a really good time to do it?

If your mom moves to a nice place where there are round the clock people awake and able to help her with her physical needs, you could come and visit and be the daughter/friend again; how does that sound?
Helpful Answer (13)
Reply to mally1
Report

First of all, sit somewhere upright but comfortable, feet flat on the floor, rest your hands on your knees, breathe in through your nose and then blow out, with positive pressure but not hard as if you were blowing out candles, through your mouth. In for a slow count of four, out through a slow count of six. Rest. Sit still without thinking about anything except the counts.

I doubt if you've taken a decent breath for five years.

Right. When I had to deal with this crossroads decision, which God help me is coming up for four years ago to my utter disbelief, I was fifty and (apart from mentally) in pretty good shape. I had access to training in basic techniques, and I had a hospital variable pressure air bed and Hoyer lift supplied to my home to add to all the equipment we'd amassed during the previous two to three years. The discharge from rehab to home was conditional on four visits per day of two health care assistants; and the fact that this didn't happen - not even close - doesn't alter the official assessment of what was required to care for my mother, viz. between eight and sixteen hours of trained care to be provided by a team of three (including me).

You, by contrast, have already broken your back; and you do not have the NHS; and you do not have the amazing friends, neighbours, GP, district nurses and HHAs I was so lucky be supported by.

I think your situation, in strictly practical terms, is a no-brainer. If your back gives way mid-transfer, not only you but your mother too will be right up a gum tree. There is no way you can be the sole caregiver for a person as disabled she is. It would be irresponsible. Would you, for example, let them discharge her to any facility where her only caregiver would be someone like you? Come on! There isn't a real choice, here, is there.

From the practical to the feelings, which are actually the bigger issue. How do you detach from the terror your mother is expressing when she fights as she does.

Don't be angry with her. The expectation that she would work as hard as she'd have needed to with the therapists was probably not realistic, any more than her wish that she'd be fine at home and you and she should go and hole up in some secret den and all will be well.

She is very ill, has been for a long time, and she and you are entering on another stage. It needn't be end of life, I wouldn't guess, not yet; but even if it does turn out to be so it is still important to make her remaining time as good as it can be.

At the moment she is lashing out fighting a prospect she dreads; and she is hanging on to you by her nails, and it hurts. You can't solve reality for her, and you can't change how she feels about it. What you can do is look ahead and work on making that as good as you can.

I'm going to stop now, come back and say more if you'd like to. I can't tell you how much I feel for you.
Helpful Answer (13)
Reply to Countrymouse
Report

You tell her that you love her and want her to have the best care possible. You are no longer able to be that care, however you will visit and be her loving daughter and your relationship will actually improve because you will not be in excruciating pain all the time.

It is a hard thing to do, no doubt. But it's not the worst thing that could happen. You could injure yourself to a degree that would make visiting her impossible or worse yet, you could die and then who would be her advocate and daughter?

Guilt implies wrong doing, you are doing nothing wrong by protecting yourself and getting her the professional help she needs.

I didn't even have a relationship with my dad and I bawled like a baby, but I knew it was the best solution for all of us.
Helpful Answer (12)
Reply to Isthisrealyreal
Report
NeedHelpWithMom Jan 15, 2019
So true! Well said.
(2)
Report
Copying this because very wise words.
Guilt implies wrong doing, you are doing nothing wrong by protecting yourself and getting her the professional help she needs. 

You are caring for her by putting her in expert hands. Sometimes, you have to detach, in order to do right by and for. That is what I have found, anyway.
Helpful Answer (11)
Reply to Segoline
Report
Erinm60 Jan 15, 2019
Your reply has helped me tremendously. Thank you
(2)
Report
Word of warning - once you take her in, it is close to impossible to relocate her. Stand your ground while she is in a facility to move her to another FACILITY. Otherwise you are doomed to suffer the never ending caretaker prison.
Helpful Answer (11)
Reply to Dolciani
Report
enderby Jan 17, 2019
This is so true and is the most important advice for the immediate short term. Tell them now that you will not take her home at discharge! It may seem cruel, but you do not have to tell her it is your decision, and the facility is obligated to find some placement. Even temporary placement will help buy time. They must provide a discharge plan and may help find some additional resources.
If you are their discharge plan that will not happen, and you will need to figure it out on your own later.
I have been through this four times.
(2)
Report
See 1 more reply
Tired - you can't do it anymore. That is no reflection on anyone -just a physical fact. I think you feel overly responsible for your mum's happiness and welfare. At your age your should be building a life for yourself. I read recently that a child that is abused or neglected by its parents does not stop loving its parents, it stops loving itself. Please get some help to make the right decision. This is a crossroads for you.
Helpful Answer (10)
Reply to golden23
Report

Well that changes things significantly.
I think both your parents are a piece of work, no matter how needy and alone your mother felt at the time it was not OK for her to lean so heavily on her 12 year old child, and your father has clearly never stepped up to his obligation to support you either. (I'm going to give your siblings a pass for now since they grew up in this dysfunction too, they may not know any better) I don't know how, but you need to find a mentor or a counsellor who can help you see yourself as a separate person from your mother and the rest of your family, at 26 the world is still open to you and there is no reason you can't find your place in it. You CAN do it.
Helpful Answer (9)
Reply to cwillie
Report
Isthisrealyreal Jan 16, 2019
Is it any wonder they ran away.

Unfortunate that 2 of them felt it was their place to remove her from the 1st facility.
(2)
Report
Tired---

You are where I was (to a degree) almost 50 years ago. Somehow, in families, there seems to be one kid who gets the role of caregiver and it sticks. At the age of 10-12, how in the world was I supposed to be responsible for my 3 younger sibs? Plus step into the role off and on of "mom", complete with all that goes along with that.

Every so often, she'd emerge from her "cave" and act like a mom. Then w/o warning she'd have a meltdown and lock herself in her room and I was "in charge". By the age of 19 my dad simply asked me to quit college and stay home and run the house, mom was so checked out. I did quit my job, but only cut back my hours at school---and lived as a mom to a 17, 14, and 10 yo. It was HORRIBLE. (2 older sibs were were no-shows)

Getting married (too young, but luckily to a great man) got me out of that sick dynamic, but only NOW am I seeing the long range ramifications of not being allowed to finish college, or travel, or have a LIFE b/c I had to take care of mother. And my younger sibs.

So much anger.

You, wonderful soul--need to say "no". Kindly and lovingly. No is a complete sentence.

Your mom could go on for years and years and one day you'll be a "widower"....with nothing to show for it.

Get your sibs on your plate with this. Move mom to an AL. She'd probably grow to love it. Baby steps. Enroll in Community College and get started on your personal life.

IF dad won't help you out,financially (what's his deal, anyway?) get jobs and live close to the bone. Push to have YOUR life, which you richly deserve.

My heart aches for you. Having been there, done that---I would wish for you to have the COURAGE to stand up and be tough, yet loving. I can't think you'd be anything but.

26 is still very young....you have a life to live. You're not ditching mom--you're supporting her in her life and hopefully she can have hers too.

And as far as being depressed--I bet you are. You can deal with that also. Re-create who you are, it's not just possible, it's IMPORTANT!!

YOU have no reason to feel guilty. I know my mom worked a number on me--guiltwise and I am still working this love/hate relationship out in therapy.

Be tough--come back. We care.

{{Hugs}}

And your story of having to sit out all the rides at Disneyland broke my heart!!! I have a bad back, too, but thanks to pain pills, was able to ride EVERYTHING there with grandkids. Yeah, it hurt, but I had the ulitmate JOY of watching my 5 yo grands screaming their heads off on "Soaring" and "Galaxy Quest"....Stop sitting on the outside, looking in. Come in. You sound like a real sweetie.
Helpful Answer (9)
Reply to Midkid58
Report
NeedHelpWithMom Jan 16, 2019
Your advice was great! You truly understand. Thanks for sharing your story with him. God bless you.
(1)
Report
You have gotten a lot of good advice here but if I may offer my thoughts.

I am afraid you are at a point in your life that your decision will affect the rest of your life. You are 26 yrs old if you were to take mom home and care for her the next thing you know you will be 36 yrs old than in your 40's and wondering what the heck happened? Time moves very quickly!

Your body is telling you that you can not do this anymore! The fact that your family has laid the care of your mom on you is/was selfish and inconsiderate. You need to take care of you because no one else will! Believe me; no one will fight for you but you!

I know a lot of people don't believe in Chiropractic care, but I was in a bad car accident 06/06/06 and lived in pain for 6 yrs. It's funny that I never realize it was all 6's! Any who, I was not able to do much of anything until I found the right Chiropractor, now I have my life back! For forty dollars a vist was so worth it. May I suggest to you find one before your back gets worse!?
You really need to let go of the feelings of letting your mom and yourself down, after all you are not superman you are just a young man who desevers to have a life. Any mother worth her salt would not want her child to live this way! There are mothers here who are taking care of a parent who now are putting things together so they don't do the same to their kids.

You need to get a job, find a place to to live and if I may offer take a few classes at your community college. You'll be surprised at how fast your life will pick up!

You cannot keep living this way! Your mom deserves more and better care and you deserve a life. And if no one told you that you are worth more, and I am proud of you for doing what had to be done with your mom, now it is your turn!

Just my 2 cents!
God bless you!
Helpful Answer (9)
Reply to Shell38314
Report

See All Answers

Ask a Question

Subscribe to
Our Newsletter