When your friends and family don't understand!!!

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Well I have been burned out for a while as I have been the SOLE...n I mean SOLE (no family and new state) caregiver for my mom for 8 years... What I want to say today has to do with when I do TRY to talk to friends about how hard emotionally this is and how desperate I am for a break two things happen:
1. The typical response is: Oh i know excatly what u mean, my kids drain me with their shenanigins, etc.... Then I have to point out but they are kids being kids growing and learning, bringing joy n happiness into your life....Imagine the opposite, There is no joy in the decline of your loved one...I am slowly being tortured by watching my Mother dissintergrate in front of me, and there is nothing I can do to help her....besides doing the best I can to care for her. My only Joy is that I am there for her but it is double edged cuz I gave up everything in my life to do that...can't work or socialize, etc....
2. They offer to help.....I have been told on several occasions "would love to help give me a break, just let them know and they will take mom for a day" But everytime I am in need, they back out! I did actually do it once and it turned into a nitemare....they were calling me couple hours in saying had to come get her cuz something came up and they gotta go, was total BS...if u knew the details, Stressed me out so bad, had to cancel all my plans n go get her! So I haven't tried again!
Thanks for the vent!!!


Been there and done that except in my case, I am raising 2 children besides taking care of my husband. It has gotten to the point that I do not expect but I suggest you call ur council on aging to see if they can provide a respite caregiver for a month or 2 so that you can get that breath of fresh air. I Imagine the stress your going thru is real bad. I suggest you look into respite caregiving or an adult daycare center so you can relax long enough to plan your next step. I give you courage for realizing that other ppl will never understand what we sacrifice and the burden it is to look after the very ones we love when no else will. What about siblings or family members...still the same then do not give up stick your foot in their asses or whatever you have to do get a chance to be you. One check on council of aging in your state and start looking for a respite caregiver and two look for an adult daycare center where there are professional ppl who can relate and also help your mom socialize. NO matter what happens be glad that you did this because were only given what we can handle but it can be overwhelming. Once you have ur information establish take care of yourself first before the next step. I will be praying for you.
well nobody can understand until they walk a mile in our shoes....it's sad to think but really in this day and age most people think of themselves and lack the empathy...I've changed in that if those, including my sibling, ever find themselves in a tough place I will not be there to bail them out
It is all a arosy picture to family..."gee you get to sit home and watch TV all day"...1) I am not a TV watcher, 2) I am chief cook, laundress, lifter and diaper changer. Yes, I am blessed with a maid every week and a few hours of relief a week to run errands; however, I am constantly watching the time to get home. 24/7 means 24/7 no matter what relief you have. Caregiving and its responsbility never goes away.
As the sole family caregiver for 93-year old mother who is afflicted with Alzheimer's disease, I have been abandoned by family and friends. No one calls, visits, or offers to help in any way. This angers and disappoints me.If, on the rare occasion someone does inquire, it is only to find out how mom is doing. No one ever asks how I'm doing. Caregivers as a group are taken for granted are largely invisible. No one other than another caregiver understands or appreciates the burdens of caring for a beloved family member with Alzheimer's. I won' forget those who abandoned me.I will probably harbor my resentments for the rest of my life.
Try not to harbor resentment to those who do not help you it will only make you a bitter person-if you can just put those people out of your mind for now.
Family is quick to discount the choices we make and to criticize what they themselves couldn't accomplish in a quality manner. They are good at claiming credit for all they do, even if the involvement is minimal.

Talk is cheap. The hunger for power and control is suffocating to those of us doing all we can to make a better end-of-live quality for our family member. Their willingness to help has to be "convenient" for them, and the fantasy would soon lose its luster when reality sets in. Some are so good at delegating to others, they just want to acquire power over others, and take the glory of "accomplishment" for themselves.

Those who are most easily bored are the first to demand, and the first to take what suits their needs, much like a temperamental toddler lacking self-control, but not short on lung power to solicit sympathy.

This forum gives us a chance to share our experiences, frustrations, and successes, if not face-to-face support.
It is hard to not be frustrated when some family members are so rudely intrusive so frequently, and so manipulative. The "poor me, she's picking on me" victimization is one of the ploys to fill the black hole of neediness by encouraging sympathy and support from others who have similar agendas.
I know the feeling. I am the sole caregiver for my parents. People don't "get it". Those kids they are referring to ARE learning. My mom is UN-learning. I tell her 100 times a day (easily) to stop pulling her oxygen tubing. She ends up with a big pile that we all trip on, including her. She twists it and crimps it. 2 seconds later after telling her not to, and why not to, she is doing it again. I repeat and repeat and even though she seems to get it when I say it, she forgets 2 seconds later. It is EVERYTHING we do all day that way. "Please don't pull your diaper up until i have washed you..." "Ok." 2 seconds later.."Please don't pull your diaper up until i have washed you..." "Ok." Sometimes I laugh, some times I cry, sometimes I want to rip my hair out!! Yep, until they have been there WITH a LOVED ONE, they will never know. I worked in Geriatrics for years, worked in the locked units, etc. Nothing prepares you for doing with your own parents! I admitted to myself I don't have a mother any more. I have a woman who I love despite driving me crazy, but my mom is gone. That is something that people don't get.

I hate it when you run into someone you know... they mean well... "how are your parents?" I know they don't mean harm, but I just say, "about the same" because I know they don't want to hear how they REALLY are.... and to really get it they would have to LIVE her for a month... only then would they start to get it. I have siblings, but they DON'T get it... and they hate me for this???

I completely get what you are saying. I am afraid of what happens when this is done. My siblings won't help me get onto MY feet. I have lost my house, job, touch with reality!! I have my car. I don't know where I will go, or what I will do. I have put everything on hold to care for my parents. I thank God that I can trust him to take care of me, cause no one else will.
Its hard. I balance a work week with relieving my brother when I can. He knows he can call a respite service; as I can only come in a few hours per week. I receive manipulation but I don't have to give it to that, either. He is in charge
of my mother's healthcare decisions (all not to keen on all of them) but I set my boundaries, too. Its a job and he choose to be in control, not me.
From my experience and observing what's happening to my friends, as caregivers, we need to create a network of family, friends, volunteers, and profession to help us share the care. At times, caregiving can feel like a thankless and under appreciated job. Here are some tips that worked for us.

If your family members are unwilling to help with the tasks, ask them to contribute financially and show them how the money is spent. My mom use to send an out-of-pocket email to our family members and close friends on a monthly basis on what she was spending for grandpa. Eventually, family members started contributing financially due to guilt.

One thing that we did that was very successful was to create a list of people who can help for certain tasks or activities. We created an actionable 'to-do list' that helped us with many tasks. So, whenever someone would ask "What can I do?", we would have them pick something from the list. Some examples are

1. Janet will help with housecleaning on Wednesday
2. Bill will do grocery shopping on Friday
3. Mary will take grandpa to church on Sunday

As mentioned by other posters, links to organizations that can help you form that network to share the care.

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