Follow
Share

I feel bad and yet I also don't feel bad for thinking this... I'm the only child of a very, very slowly aging mother. My father expired in 2007 and since then, I've been my mother's full-time caregiver. My father's expiration was of different circumstances and just weeks before his death, he was nearly independent. However, my mother's health has been a sloooow and steady decline and it's so just hard to watch. I love her so, so much but there is no upside to her condition. She doesn't have dementia (yet) but she has a slew of other issues that require her to need round-the-clock care. I don't communicate with my "former" friends because they're either not in a caregiver role, or they've put their loved ones in a facility, or they're loved ones are still healthy and independent. And I don't want to hear from my former crew all the same judgements any caregiver has already heard; "You're such a good daughter...Your mother is very lucky to have you (and you don't have anyone - because you don't have time to meet someone or a potential guy/girl doesn't want the added responsibility of a 70-plus year-old child)...God will reward you for your sacrifice (I hope so - I hope I die quickly and painlessly in my sleep so I don't live when I've lost my independence)...You should put your mother in a group home so you can have a life (when the staff will just stick her in front of the television all day at nearly 5K a month?!)...Glad I'm not in your shoes because I wouldn't know what to do (You're already planning to write a fat check to a care facility that serves Mystery Meat Mondays and Jello Salad Surprise)...You're going to die alone if you don't put your mother in a home so you can meet someone to take care of you. (Thanks for making me feel more alone than I already do. You should've just punched in face - it would've been less painful! )...Oh, you have so it easy not having to worry about working in a 'real job' (Umm, excuse me - I work my ass off - I'm on-call 24-hours a day!! No mindless watercooler break over here!!)..." And the list goes on. My personal favorite: "So, what do you do? I'm my mother's caregiver. Oh..."(Awkward response with crickets chirping in the background). There's no societal respect of being a caregiver. I'm not trying to be a martyr or be nominated for Best Daughter That Was Ever Born but there are times when I just feel my role is so unworthy and flat-out unappreciated. I'm CEO - of my mother! Before my parents became ill, I had a successful career, plenty of friends, lots of activities going on. I dropped everything when they needed me - and I'm glad I did it because I experienced a tremendous amount of personal growth that I never would've have before their journey into their last years. The changes that occurred within me has made me a better person and I'll always be thankful for this. I want to do things with my mother before she passes away, but unfortunately her medical issues don't really give me an option. I'll always love her but when she can't participate in life and is just existing in a body, then what is the point of living is where I was going with my discussion headline. Thanks for letting me blow some steam.

This question has been closed for answers. Ask a New Question.
Find Care & Housing
Great decision & well done for making it! Wishing you all the best for your You time .
Helpful Answer (1)
Report

Thank you to all who've had the courage - or frustration :-) - to let me know how you feel. Like many of you, I won't be dancing on the tables when Mom finally passes. I'll be so sad and alone as she's the last blood relative. I'm on my own. No one to share The Holidays with, no one to share my successes with, no one to give me that parental support, comfort, and guidance from years of wisdom and experience. I have to figure it out all by myself. But I hope/pray when she does pass, it'll be quick and painless because the thought of her suffering like my father did just makes my stomach churn with torture. I vicariously lived through is suffering. Really, it was a mess what happened to him. One of the meanest things a "former" friend commented in a random discussion we were having about elders, she said "Well, my parents love me and that's why they got long-term care..." Initially, I was so shocked - and then I got f*!king mad at her - because my mother doesn't qualify for long-term care due to a pre-existing condition!! And this "friend" was someone I've known for more than twenty years so it wasn't like she was a sudden acquaintance. It's a cliche but so true: You really know who your true friends are in times of a crisis. I love Mom so much but this is getting ridiculous as she could easily live another five to ten years in a continuing and steady decline - while I'm just her caregiver. I recently decided it's time for me to take steps to get on with my life. I'll still make sure Mom's needs are met and she'll be safe, etc. But I need to do something for myself - for once in a VERY long time. My father would be so, so sad that I've lost my drive and my happiness. I used to be a fun, vibrant, full-of-life. Now I'm stressed, irritated, worried, bitter, etc. And packing on the pounds from drinking wine to keep me sane doesn't help with my self-image! Before my parents became ill and needed my help full-time, I was a technology consultant with Deloitte and Touche with ambition of moving up the management ranks. Yes, I have a brain! I'm not just a "caregiver"!! Technology is a wonderful and flexible high-paying position - if you keep your skills marketable - and I wasn't given this chance. Trying to get back in now at my age is a joke. Because of what I've been though, I'm changing career goals and I'm working towards getting this accomplished in the next year. And I'm getting some more in-home help, just another few hours a week, so I can do fun stuff, like go to the museum, ride my bike in the park, take an arts and crafts class, learn how to play chess, join a bookclub, meet new friends(!), etc. When I'm on my deathbed - I don't want to regret that I didn't at least try to carve a life for myself while I cared for Mom. Now is my time and I'm just riding it for as long as I can. Have a great night everyone!
Helpful Answer (4)
Report

I could have written your post, Careisgiving, particularly the platitudes coming from friends and neighbors. I too have heard the crickets chirping when someone asks what I do for work. It makes me feel undervalued, like a lesser person and invisible. No one who hasn't waled in our Manolo's will ever understand. My neighbor who is generally a kind and thoughtful person tells me she understands because she was a CNA 20 years ago. No, no you don't understand the difference between going to work, doing this hard job for strangers, clocking out, grabbing your paycheck and enjoying the rest of your days and two days off a week. Oh, and you're able to sleep as well so no, you don't understand. Another friend constantly complains about everything's nh despit having a mother who is still ambulatory, in possession of her mental faculties and having a nursing home policy. Plus, he's able to work the last fifteen years I haven't, has a nice retirement fund, great health insurance and money to travel. He too told me to throw my dad in a NH. Yes I could have done that if I could live with my conscience and didn't mind me and my brother living in a cardboard box down by the river. Easy for them to spew when they've never lived our lives. My dad is near the end as he's being sent home tomorrow on hospice and I can see the signs how fast he's gone downhill. I want his and our suffering over because Alzheimer's and small strokes have robbed a once vibrant and wonderful father of his quality of life for almost 12 years. My Brother and I are heartbroken, exhausted and guilty how hard it's been on all three of us, but he'd be 93 next month and he deserves to rest and be free of his broken down body. I can't imagine him not in my life and I, scared and angry and sad but he deserves to go gently and be free. So your post really resonates with me at this particular time.
Helpful Answer (2)
Report

Thank you Careisgiving your posts have absolutely lifted my spirits and saved me an expensive trip to the dentist from teeth gnashing. I was having such an incredibly lousy day and feeling like the worst carer in the history of carers in the universe!
Now I know I'm a regular overworked, overtired carer in great company on this forum.
I'm so very sorry for your Mum, I have a lot of ailments of my own and it is frustrating being dependent on others and scary knowing the outcome.
Bless you for your compassion & insight. Your right in that horrific as dementia is, there is also that peace when you've passed the cognotive barrier and no longer have to be aware.
I know this personally from my brief interludes of "losing my marbles" downside is the hell on finding them again & knowing what happened :~(
I'm a carer for widowed BIL and get many of the same stupid remarks (when that is they're not talking over my head to ask my care support things grrrrr).
I'm so sorry you're in this position and that people in your life make such crass remarks.
It is vital that you make sure Mums safe and get quality time for you. Remember how your Dad wanted this for you!
It's not being selfish to have You time, it makes you a better carer.
Be good to yourself and keep up the inspiring rants :~)
Helpful Answer (1)
Report

You're certainly not alone in wanting to gnash your teeth at some of the crass things people say and the judgements they make, my goodness me no. I am currently collecting "I couldn't do what you do" type comments, and awarding myself a small gold star every time I refrain from retorting "oh really? Why not?" Couldn't, my eye - these people are no more or less able bodied and capable than I am. What they mean is, they are making different choices. Which I'm totally cool with until they get hypocritical about it. But the falsehood of this 'oo you're such a saint' bit when they then go on to portray you as a sentimental mug gets right up my nose.

Thank you! - I feel better for getting that off my chest :)
Helpful Answer (3)
Report

Careisgiving, yes, care is giving, but one of the things that will comfort your mom in her decline is to see you thrive and go on to live well. If you can take care of her at home it will be a great blessing, I wished I could have too. But, do get any and all help you can to do it - you could use a little more respite than the once a week - and no, feeling like it will be good when it is all over is totally normal, and yes, some things about your life will be better even though you will miss her.

I REALLY admire the attempt to get Mom out for any experiences she can still enjoy - we did that with my mom quite a few times and they are very sweet memories now. We adapted a Scion Xb to be her wheelchair taxi, which was pricey but also a lot less than a standard van arrangement. We had to keep expectations low and realize that there was only so much that was going to be worth it. (Mostly it was going out for pizza :-). My husband and I just went on a tour of Rome and a cruise for our 40th anniversary and there were a few folks very dependent and in poor health on the ship; they could not do as much as most people, and to be honest my husband could not do some of the things he wanted to, but we enjoyed what we could and I went off and did a few things on my own when I knew he was safe and happy doing something else.
Helpful Answer (2)
Report

Oh no, no. Sorry, I didn't clarify: I can leave her for a few hours but I only leave her for one hour once a week so I can do the grocery shopping.

I grew up in an usual situation. My father was my mother's caregiver for the entire duration of their marriage. My mother was born with some significant health challenges, so growing up, my father worked full-time in his profession, then come home to another full-time job, taking care of my mother and raising me. He was the ultimate Mr. Mom. :-) Because of my mother's illnesses, I grew up with a lot of responsibility but my father insisted he care for my mother and to not have me worry about her. And because of our unique family story (which is an Oscar-winner. Seriously!), I'm not overwhelmed by the amount of responsibility, I'm just more frustrated from watching the very, very slow decline of my mother. It's really painful to watch. And she fully understands the slowing of her body and this is also painful. Sometimes, honestly, I wish she had dementia/no memory of her circumstances because I'm thinking she must feel so scared knowing her future is not a good one. Yes, we're all living longer but that doesn't necessarily mean that we'll have quality of life. It's just so hard to see her like she is. My car is equipped with a device that runs on the car battery and will transport her from her wheelchair to the passenger side of my car (my crappy 2000 VW wagon that I hate so much - but it's a h*ll of a lot cheaper than a wheelchair van!) so I can take her outside - which I gladly do - but because of her ongoing urination issue, we can only leave the home for a few hours. Again, it's just hard to watch her in this manner. I don't pass judgement on anyone who wants to place their aged loved one in a home - it's not an easy decision and I totally understand the pain of doing this but don't pass judgement on me (all from my former crew) that I've made the decision to not put my mother in a home. I also struggle with the pain of the sacrifice I've made, with the time I've lost in building a career, having a family of my own, traveling, etc. Thank goodness for you all who can relate to what I'm going through. I don't so feel so alone. :-)
Helpful Answer (2)
Report

Caregiving, it's nice that you really want to be your mom's full time caregiver and are happy about it. I do understand why others may caution you and worry about you giving up your life to care for your mom, but it's a personal decision and entirely up to you. It's a good idea to hire help and get out a bit to charge your batteries. I still wonder about overload based on your responsibilities.

I noticed you say that your mom is bedbound, but that you can leave her alone a few hours during the day. I would revisit that decision. Did I read it correctly? If there is an emergency or fire, she could not get out of the house.
Helpful Answer (2)
Report

Thank for your support. I do have someone come in once a week for a few hours - and I so relish this me time. My mother can be left a lone for a few hours a day because she's lost her mobility (from side effect of decades of medications for a medical condition). I have a Hoyer Lift in her room to get her out of the bed and into her chair. But she also has severe urinary incontinence from medication-induced kidney damage, so her undergarment needs to be changed every 1 to 2 hours. Because of another health issue, she's not eligible for the catheter on the surface of the bladder, the kind where urine can be easily drained. Her only other option is the catheter in the "private area" with the urine bag. Her doctor would prefer not to do this catheter option because of the high-risk infection, damage from changing out the catheter. Her overnight urine out is the worst - nearly 1.5 liters! Seriously. It's like 1.5 bottles of Gatorade. I put a booster pad in her undergarment for the overnight use and it's very heavily saturated by the time I wake up to change her. I was in my early 30's when my parents suddenly needed my help full-time. Now, I'm in my early 40's and I just want the opportunity to do things for me. Last night, actually, I decided I'm going to get someone else to come in for another few more hours so I can do some things for me, like going to the museum, to the art gallery so I don't let the resentfulness eat me alive. I, like all of you, love our aged loved one but we're human. We deserve to have good and bad days. When I'm feeling really down, I just think about what it would be like to put my mother in a home - and then I snap out of it and realize her living with me is the best thing for both of us. Because, frankly, I would be at the group home - all the time - to make sure my mother's needs are being met and to keep her company. She's not very communicative since her stroke (2006) so she should would just be in her room all day long in front a television - at nearly 5K a month for a single room or nearly 3K month with a complete stranger for a roommate. Ugh...I don't want this for my mother. Years ago, a hospice nurse told me the hardest job on the planet is being a caregiver. And she said I'll have no regrets and feel good that I did this for my parents. She's right. I'm glad I had the opportunity to make sure my father had the best quality of life in last years. And after my mother passes (Soon, please!! LOL), then I'll come full circle. Have a great day!
Helpful Answer (0)
Report

Do you have any kind of outside help coming in to give you some respite time? Can your mom be left alone at all? I've found that physical exercise has been a huge stress reliever for me, so I'm glad you've found hot yoga - be sure to go!

I've been caring for my mom and dad together for 9 years and now my mom for an additional 4 years (13 years in total). Mine isn't a 24/7 role like yours is, but at 95, my mom needs a LOT of help from me. I have days where I'm very resentful (luckily those only happen once a month or so) and days where I don't mind the burden. But it IS a burden for both of us. My mom has been ready to go for some time, but as I tell her, we don't control that part of life. So we do the best we can.

So hugs to you - you're doing noble work, as we all are. I, too, hope there's some karmic benefit down the road. But even if there isn't, I know I've done the right thing by my parents and you have too.
Helpful Answer (1)
Report

Thank you so much for your reply. What I didn't mention in my tirade is that I'm first-generation American. My parents immigrated here from India, where it's culturally expected that family care for aging elders - but there's usually many immediate and extended family to assist. Although I'm pretty much all-American, I do some things out of respect for culture and tradition. It's just hard caring for Mom all alone. I have to believe everything that I've ever wanted out of life will happen but I need to survive this difficult time to appreciate the light at the end of the tunnel. I recently joined a gym with a hot yoga studio and a sauna - I'm definitely going to do these to help me relax! I deserve some me time. :-)
Helpful Answer (4)
Report

That's a very good rant. Anyone going through the long decline of elders is lying if they say they never want to just get it over with. Particularly when the quality of life is gone. We all wonder at times, how much longer will this go on...............
Helpful Answer (9)
Report

This question has been closed for answers. Ask a New Question.