Marialake Asked April 2014
What is the one thing that bothers you the most about caregiving?
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I guess I'll go first with this one.
The thing that stands out the most for me about MIL with alzheimers.......
Everything is ALL ABOUT HER. I could cut my arm off and be bleeding on the floor right beside her and she would worry about who was going to bring her a cookie.
I am treated as" a nothing" in her world.
Then I feel guilty for thinking she's an old battleaxe.
Well that's my confession.
How about yours?
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I am jealous of people who can be caregivers and be kind and calm and confident at the same time.
Now I fear growing old and disabled on my own. It's awful, awful, awful. Nothing to look forward to except eventual decay and death.
My issue now is the never ending dealing with Medicaid which now my fathers inheritance from
my mother requires more dealing with Medicaid and the nursing home. I am waiting for some awful shoe to drop. I have a lot of anxiety. I am so damn angry at my parents for not doing any financial planning when they should have. I am so damn miserable about this mess. My mother always wanted to break me. Well she succeeded. I’m going on year two dealing with this crap. I hate them.
2. Loss of identity
3. De-railed retirement
4. Sense of being held hostage by an aging parent
5. Watching other friends and family-members travel
6. Sense of isolation
7. Living a life that was not truly mine (at times, it felt like indentured slavery)
8. How easy it was to fall into the role of caregiving (due to my proximity, at the time, and Mom’s immediate needs)
Those were the things that bothered me the most about caregiving. I am still processing having recently had my 94-year old mother move to LTC in another city with my sibling close by. I am relieved to be out of it, and quite certain that I never want to be a primary caregiver again.
I did it for 10 years: it changed me.
Now my time is winding down, as he will go into a state run facility. I turn 65 in a week. My savings are down to zero, I had to give my job up to provide the ever increasing care required by my father. My future is a bit grim. But I will be OK.
It is hard to imagine how I will keep a strong relationship with my siblings. They threw me under the bus. Then again, what did we actually have, if this is the best they could do for a loving brother?
And after that we should exercise, do hobbies, get enough sleep, eat right.
Yeah, right.
And how overall there is no recognition for caregivers who do several jobs, modern slavery of 24/7.
My beloved mom just passed last Monday, (I moved home to care for first my dad, who passed in Feb. 2020, and then my mom.) I promised her that I would do whatever I could to keep her at home until the end, and I busted my ass to do it. I managed to hold it together and go hard for the first few years, but after we made it through COVID, the hits just kept coming. Our house flooded from Hurricane Ian, my mom was diagnosed with breast cancer, and then after going through that treatment for that, she had a major heart attack, and then her body just continued to shut down. Through most of it, I barely kept it together, (dealing with contractors and insurance for flood repairs, cooking, cleaning, yard work, her care, doctor appts., financial stuff, errands, etc.). Still, in the last year, the burnout started setting in and I started to feel a bit unhinged, both mentally and physically. And, even when we signed up with hospice, I was still responsible for most of it and I would beg for respite, telling the nurse that I was overwhelmed, that I was exhausted, etc., yet I wasn't feeling heard. I would cry to my friends, saying that I felt like I was losing my mind, I was suffering from such physical fatigue that most days I had to call on every bit of strength I had to care for my mom, and all I ever heard from everyone was "Hang in There" "Eldercare is Hard" "You're Doing Great". I even lost two longtime "friends" because they couldn't fathom what I was going through, said they felt neglected, and that our friendship had become one-sided.
And even now that my mom is gone, I haven't had time to grieve or to honor her properly or to treat myself to a proper haircut, because I have no money and the insurance company is taking their sweet time paying my modest death benefit. So after five years of giving everything I had to give, (literally) still, I'm left to deal with a house with an underwater reverse mortgage and 40 years of memories and things to sort through, sell, donate, etc. with only 30 days (I've asked for an extension but I don't think I'll get one), I have to find a place to live and figure out how to make a living after five years out of the workforce (AND I'm almost 60). And on top of it all, I'm suffering from such debilitating post-caregiver fatigue that I can hardly function.
So yes, I, too, feel abandoned and unseen and have felt that throughout the entire caregiver process. So much so, that I've vowed to myself, that if I somehow manage to make it through the last leg of this journey, I would start a non-profit organization dedicated solely to CARING FOR CAREGIVERS....something that will provide people like us with TANGIBLE services (massage, chiropractic, acupuncture, nutrition assistance, haircare, mani-pedis, talk therapy, house cleaning, pet care, yard work, clothing donations, errands, etc.) through both monetary and in-kind (contributions of goods and services) donations. I don't know when it will be, because right now I can barely find the energy to take a shower, but I will make it happen.
Until then, I won't tell you to hang in there, or any of that other crap. Just know that I SEE YOU. And I feel your pain.
I have looked (for 2 years) for assistance (physical and financial) from many sources (without getting into the details): siblings, veterans, doctors, etc. I'm slowly drowning.
DH: I think I’ll make a cup of coffee. (He can’t; he doesn’t know how.)
Me: Ok, but can you wait until I finish wrapping this last present on the counter so you don’t get them wet?
DH: I guess I’ll have to….you're so helpless.
First is the Emergency Room Honeymoon. Husband is stoic to a fault; by the time he consents to go, he tries to convince everyone there he's fine! Slows down diagnosis & treatment, of which he's convinced will be terminal.
Then comes Hospital Honeymoon. After discharge in bed-bound condition, his relief at being home rests on his lingering need for constant bustling attention, no-delay requests, and resumption of things the medical team forbid he ever have or do again.
Home Health Care Honeymoon is the most protracted. Too many visits, too few, playing PT bed-exercise assignment hookey, and the struggle for him to plug his own elusive initiative back in. For all the real life-saving help he's gotten, though, and his own gradual weaning from helplessness and fatigue, I'm eternally grateful.
I just fantasize at times what it would be like to have those medical Honeymoons include automatic inclusion and coverage of solo at-home caregivers, too. Ha ha!
But, it's all worth it when we start the slow dance back toward whatever level of restoration may be possible each time. My celebration today: husband made the oxygen-assisted walker-journey from bed to the bathroom for the first time in 4+ months after having rare (incurably mutating) double pneumonia and severe anemia! His health is stable & improving for now and meds are helping keeping the bugs at bay. So, for me, Post Honeymoon bliss is the Best!! 🎉
Why are WE the Ones who end up being the sole Caregiver? Because-think back to a time -say-when you first met your now disabled spouse. You may not have known his past History -but his Family-So encouraging of the "relationship" with you , did , and saw a lot of "potential" in YOU -what a "good wife" you could make . Values such as Loyalty and Kindness could serve them well.
Another factor that points to You as Caregiver, particularly over the care of a parent, is your position among your siblings in a Family. Eldest, Middle Child, Youngest, whichever was held most responsible for Family Unity, even back to childhood , Bingo-their IT. Or, as you grow much older, the Care can fall ,without question, on the Younger ones. It often falls, too, on the healthiest ones , which is supposed to serve as your big reward for living well. "No good deed goes unpunished" .
Finally -I just accept it and realize I still wouldn't trade places with anyone. This is My journey.
I miss them and I am so grateful that I was able to take care of them the best that I could and I would do it all over again.
RIP Momma and Daddy
PS: I am now a caregiver for a wonderful, smart woman who reminds me so much of my mother. Also, I was a caregiver for a sensitive, caring man who passed away last year.
It is a blessing to have known him and his beautiful family and a blessing to work as a caregiver...I guess it's all about one's mindset.
She has made my life and my parent's life a living hell for the past 25 years, and though we've done everything in our power to help her so many times, she's squandered and trashed everything she's ever been given.
So, yeah, I have a caring heart too, but I'm beyond depleted and I have absolutely nothing left to give. I've given it all to my beautiful, amazing parents who would now want me take care of me and take this time to "refill my well". (my mom's words)
So, I'll probably have to pack up all her shit myself (which I've done twice before) and have a huge blowout, but then once this house is sold, I'm getting in the car and driving away from this town, this state, and my sister with my effing hair on fire.