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.
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?
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.
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.
You have EARNED that name! You have done so much already. You can’t risk an injury to your back. Then you won’t even be able to take care of yourself, let alone your mother.
Just the the fact that you are agonizing over this tells me how deeply you care for her. She is blessed to have such a loving daughter.
I don’t think you have any other choice but to seek outside help. It must devastating to be in your position. Take comfort in knowing that you are doing the very best that you can. Vent anytime. We are here to listen and hopefully help in some capacity.
Find a facility that has happy residents and caregivers, and place your mom there, that's my suggestion. And think of it in a positive light instead of as a 'bad thing' you're doing.........you are actually doing her a FAVOR! Focus on your own health & well being so you can ditch the horrific emotional & mental toll you've been suffering. You deserve to!!
Best of luck!
I've tried everything to detach but it just doesn't work, at the end of the day when she starts bawling, begging to be taken home and saying things like "I knew I should've never gone to the hospital that night and should've stayed in bed until I died." It kills me, I can't even stay in the room.
Part of me is even resentful/angry at her (trying to use that to my advantage) that SHE refused the more rigorous/harder therapy, simply because she didn't want to do it, that it's her fault that I can't take her home and don't get the oh so wonderful opportunity of continuing to sacrifice and take care of her because she didn't do everything she could/was supposed to to get her there, but it doesn't last for long.
A major issue is she seems to think I'm superman, like I can somehow manage to do things no one else can. As if I'm capable of doing something that an entire staff of nurses has admitted is tough even for them to do. Sometimes she acts so stubborn it's like she doesn't comprehend or care that attempting to do this will literally kill me, as long as she gets to be/do what she wants.
As for trying to explain it to her, that is never going to work. I know she is going to fight tooth and nail, cry, yell and use guilt trips. The other day she was saying things like "my family doesn't love me anymore, they want me dead" etc. What's more is I know a lot of it is crocodile tears because she can be very manipulative when she wants to be, but even telling myself that doesn't seem to help. She was so desperate she actually suggested I take her, by myself and we move out to this tiny property we bought like 15 years ago that has nothing on it but an old 1 bedroom apartment-sized dilapidated shack with missing windows, half the roof gone, mold, and infested with God knows what animals.
I honestly think this might have to be one of those "just keep fibbing to her" situations. Where I'm going to have to make excuses for why she's in a facility, and reassure her that she's only there temporarily while I sort things out and she'll "go home soon" even knowing she most likely never will. It's what I did when she was in the first rehab after her first stroke (we had no idea at the time if she was going to be able to return home) she was in that one for about 4 - 5 months and it was just non-stop lying to her on my part to try and keep her content.
Even that is taxing because it's not like she'll be okay with it and just ride it out, every single day she'll call dozens of times every minute I'm not there and when I am there to ask/beg to go home.
Get out NOW. You have nothing to feel guilty about. Nothing. She needs a level of care that you can not provide. Sounds like you already have been pushed beyond your limit. Physically and emotionally. I know the feeling, like she is sucking the life right out of you, right ?
Its time to put your own life first. You were not born to be a caretaker for your mom. Be clear with case managers where she is inpatient now that you will not take her home. As for other relatives, unless they want to take over (unlikely) then their say doesn't count.
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.
What about your happiness? Isn't it about time to put yourself first. I went to a Rabbi recently because I have allot of false guilt that keeps me taking care of others needs before mine. Right now..its my mothers.As a survivor of domestic abuse he recommended i get some counseling. Which I have started. Do you have hobbies? How is your social life? Maybe now is the time to join a book club or start projects like cleaning out the house. And you can always visit her at the Assisted Living Facility where she will be getting more help. You will be happier in the long run because your back will be happier too. I hope this helps. And I hope u can let go of the guilt and find serenity in that you were a fabulous caregiver who went up and above for someone else.A noble duty. Hugs
The last time I went out or did anything "fun" was 3 years ago my sister visited from Colorado with her family and we all (including my mom who I brought along) went to Disneyland. Which meant I didn't really get to do anything anyways except exhaust myself pushing my mom all around the park and being the one sitting on the sideline watching my mom (and their kids if they weren't age appropriate for the ride/activity) while my family did all the stuff there is to do.
I haven't gone out or done anything since, while taking care of my mom my "enjoyment" is either watching TV, videos, or movies on my computer or maybe playing a video game for a few minutes. I guess those would be considered my only hobbies. I've had a couple of old friends try to reach out and invite me places but I've always had to turn them down because I couldn't leave my mom.
My daily routine would consist of taking care of any and all needs for her, and if there were errands like needing to go shopping that's the only time I'd get out, once in a while my dad would "watch" her (basically just be a set of eyes and ears so she doesn't die or hurt herself) and I'd get to run those errands on my own giving me about an hour of time to myself whilst running them.
It does get to me, and brings me to the point of crippling depression sometimes but what can/could I do? Can't very well just leave her alone and hope nothing bad happens to her while I'm gone. Sometimes I get jealous of my now 18 yo niece because she's lived ten times more of a life in her short years than I have in my 26. Hell, my 11 yo nephew has lived more of a life than me.
Though, this is because up until the stroke I was still taking care of my mom. Before then she had a serious knee jury from the time I was around 12, and even though she could walk and such she needed help with a lot of things so I've been her "helper" since I was 12. I could never escape or get a way for similar reason to right now such as guilt and my family not providing any support/help for me to get away. She had the stroke, when she went to the hospital I finally got out then for about a year or 18 mo. I stayed with one of my other sisters and her husband, got a job, friends, etc. My life was finally beginning. My family took my mom out of a facility she was in and dropped her off on my dad (yes, my brother, who no longer lives in state, and one of my sisters (not one I lived with) actually went and took her out of a facility she was in, and then pawned her off on my dad.) I could tell physically just looking at him it was killing him, so I moved in to help take some of the load off and somehow within a few short weeks ended up being sucked into being her 24/7 care giver. It kind of just escalated slowly to me doing more for her, my dad doing less and less, until it got to a point he was doing almost nothing and I was doing literally everything. That was about 4 - 5 years ago.
The irony of the entire situation is had that brother and sister not taken her out of that facility all those years ago she would probably still be there and well gotten used to it by now, and we'd all be living our lives.
That same brother and sister are the ones who advocate and make it seem like the weight is all on my shoulders and it's my job to make these mentally and emotionally draining decisions about her life or be the one to take care of her. When they took her out they tried to drop her off on me, I still remember a text from them stating "we're getting mom out, you have to take care of her." Which I refused, said it's their job if they want to take her away from safe care, and the sister I was living with and her husband supported/backed my decision which caused a huge rift/argument between those siblings for over a year.
Is that her plan, for you to live your life as her handmaiden? What are you supposed to do when she dies?
She needs to be in a facility where she can get the care she needs and deserves. And you, dear girl, need to finish your education and get employed.
Trust me, I know, and there isn't a day I haven't thought about it/feared it. I only have minor work experience from 3 short jobs (one volunteer.) No education outside of graduating HS. Once this happens, if it happens, I guess it has to..I'm gonna be in for a rough one and have to figure out what to do ASAP, as my dad has talked about moving back to Kansas soon after selling this house (where my mom used to/I currently live) meaning I'll be out of a home with no source of income. I should be looking for jobs right now, not being the sole bearer of the responsibility of keeping my family "updated" on my mom's situation and trying to take care of/make all these decisions on whether if I can care for her or not because it's obvious I can't, no matter how much I hate it or fight it.
And I'm a male, which has only made caring for my mom even harder. I can't tell you all the times I've gotten dirty looks and what not for having to take her into the mens restrooms when out in public, or basically doing anything I need to do for her female-wise that a boy shouldn't be involved in.
I'm just hoping this mess with my back gets sorted otherwise I don't know how I'll be able to get any sort of physical labor based jobs. This whole caregiving situation has really put my life at rock bottom, and yet, I'm still trying to do everything I can to continue devastate my life to continue caring for her.
Sometimes I feel like my only purpose for being put on this planet was to care for her and that was it, and when that time was over I'd somehow coincidentally pass away.
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.
Unfortunate that 2 of them felt it was their place to remove her from the 1st facility.
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.
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.
You are a wonderful son and have done so much more than most children(especially sons) would have done for your mom! It is your RIGHT to have your own life. It always has been, and bless your heart for giving it up so far. Think of all of the things you want for your life. You are still young enough to have them all. Your mom probably will be unhappy in a facility, for a while, but most people do adjust and even get a feeling of security that someone is there and capable of handling anything that comes up 24/7. She will adjust.
And if a family is in your dreams, I'm sure finding a partner who would LOVE to meet someone with your level of caring and compassion would be a piece of cake!!!
Please don't let mom manipulate you into taking her home. It is a good parents job to raise their children to be independent and fly! I have 3 daughters and not for one minute would I expect any of them to sacrifice their life and happiness for mine.
Please let us know what you decide. Try talking to a therapist or counselor. It often helps to talk with someone who is completely objective and has no personal stake in the outcome. Hugs and support to you!!!
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!
What's the story with your father? Is he still married to your mother? Years ago, he allowed you to become her caregiver. And now he wants to sell the house out from under you?
If the rest of your family wants your mother in a facility, let it happen. You can still be a loving son and visit your mother in the facility. You do NOT owe her any more than that.
Please, please, put yourself first from now on.
This is the new reality add there's nothing to be guilty about. She had a medical incident n and b this is the outcome.
You and your family have to figure out together what to do moving forward.
You have said so in so many ways, and we believe you.
So sorry I accidentally referred to you in an earlier post as female (daughter to your mom). My goof!
You are one of the most compassionate sons I’ve ever seen! My brothers do nothing to help with my mom. It’s all on my shoulders, a heavy weight indeed.
Breaks my heart that you are so young and have missed out on so much of your life! There has to be an answer or solution to your really tough situation. You’ve received a variety of advice here.
It’s not easy but get your life back. If anyone deserves it, you do. You’ve paid your dues and then some.
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?
Long story short - we went to a marriage counselor who confirmed I needed to start making decisions based on my needs instead of moms. I talked to my doctor about increasing my antidepressants to get through what was going to be a very rough situation and placed mom in an assisted living facility. She was incredibly mad at me, she cried for months, she reminded me every visit how I promised to take care of her. She refused to participate in activities at the assisted living. I cried everytime I saw her - the guilt was overwhelming at times. My husband actually yelled at mom once that SHE was the mom and he couldn't understand why was her happiness worth more to her than her daughters health. (I am 47 years old - so having 2 major back surgeries in under 2 years was disconcerting.)
It's been a year since we moved mom. I had my second back surgery 4 months after we moved her. Although I would not recommend surgery, it did actually help the situation because I was completely out of commission for 6 weeks and couldn't physically do anything for her care wise for over 3 months. She HAD to rely on the staff at the assisted living. Amazingly, she has done really well and the things she can do independently has increased. I was able to find a place that offered "enhanced assisted living" since she does require extra cares.
I see her every other day - she still pushes for every day. Once in a while I still get tears from her which absolutely breaks my heart - and always will. My guilt is still there (and strong), however taking care of myself, my marriage, my kids etc is now equally as strong which makes day to day easier.
My advice to you is...take care of you...as hard and as wrong as that will feel.
So now it just feels like it's always going to be a burdening guilt, that she always has the option to go home (and she knows it) and the only reason she isn't is because I'm saying no. And I'm not even aware when or if they're going to tell her that they're placing her because I know that is an impending storm to deal with when she finds out.
A lot of the problem is the issue of all of this being placed on me, I'm expected to deal with it all on my own. If a decision or something needs to be made the case workers, nurses, doctors, whoever, always want to talk to me. If anything needs to be done relating to mom someone has to talk to me. Like I'm her representative or POA or something, which I've never had those responsibilities. For 3 days I actually muted my phone and refused to use/look at it, because I couldn't breathe, sleep or relax with all this anxiety and pressure. When I finally did look at my phone this morning I almost had a hospital-trip worthy panic attack seeing I had dozens of messages, texts and literally hundreds of missed calls. All from either family members telling me what I should be doing or from people trying to contact me about stuff about her potential placement, and of course no shortage of missed calls from my mom trying to get ahold of me from the facility to do what she does to try and get out.
I feel like I'm in a situation where this is going to end up killing me or hospitalizing me whether I took her home or not. I've actually had serious considerations of just disappearing, leaving and going somewhere where none of my family know where I am or can reach me for fear of what I'm going to do if I don't relieve some of this stress and anxiety.
I don't think there's been a single hour since this all began that I haven't felt extreme anxiety and/or depression, it's like a constant ongoing panic attack that has no end in sight.
Couple that with all the regret and guilt and it's like a never ending nightmare, and aside from this forum there's absolutely no one to talk to about it. Being a caregiver, I guess essentially all my life, has left me with no friends or close acquaintances to talk or vent to. I actually went sat at an AA meeting the other night just because I wanted to be around people, and there's not really any other types of groups to go to out here.
your mom, which sounds like could be the case.
What you're going through is so typical, people just try and pass the buck onto whoever is the primary caregiver, because it's so tidy. And then it's on
to the next. Try and not take it personally. Family members and friends can
do the same thing because again, it's easier. You've been doing everything
and . they have no idea apparently how insanely tough that is.
Hold your ground and have her receive appropriate care. Not only can't you
do it for your own health reasons, you'll being risking your mom's well being
and safety by attempting unsafe transfers. There Is No Way for you to keep
doing this. I'd emphasize that it's unsafe for your Mom as much as you'd like
to help (NOT!! lol, but I'd keep that under your hat)
Again, good luck!!!!
Listen. You can change one thing that might help.
The case worker might be the person to have this conversation with, but if she isn't she'll know who is.
This is the conversation you need to have. You need to tell the person that, in spite of all you have achieved over the last years as your mother's primary caregiver and advocate, it is killing you and you are too young to cope with it.
They're not handing you these decisions and responsibilities because you're the only person who can deal with them. They are respecting your *right* to act for your mother, because they believe that that is what you and she want.
And they believe that because that is what you have been doing. You're always there. You always step up. You love your mother and you care for her wellbeing.
Yes, all of that is true. But enough now. You need to stop before you break. TELL THEM SO.
PS The "you can always change your mind" shtick is merely an antidote to the person's feeling that they're giving up their freedom for ever. Sure, you *can*. But you're not gonna. Hugs again.