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.
Thank you! - I feel better for getting that off my chest :)
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.
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. :-)
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.
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 :~)
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