Hi AC Forum,
I feel like I run the gamut of emotions on a weekly basis. I think that is a difficult side of this caregiving. Not being able to fully satisfy - or not being able to satisfy for what should be a normnal period of time. And on the same token know that each day you go down this path you just running to the finish line.
It's the craziest and horrible life as I am not able to live my life, yet I have a hard time thinking of my mom living with less. Also not being the face of which she says to at first seeing her and asking her how she is, "Better now that I see you!" Knowing that you are the comfort in their sight. Yet what it takes from one feels enormous - emotionally, monetarily, physically.
How are you doing?
LastOne
One thing I really dislike is when I go out and someone asks me how my mother is. Most don't even know my mother and are just making polite conversation. But really, can I never get out of the caregiver role? I really don't want to talk about her when I'm out.
Sometimes we have to remind ourselves how worthy of respect we are and that we are equally important to the people we care for. smikulick, I wish you could get back those final years with your husband. I know you would have done things differently if you knew what was going to happen. I am so sorry.
Hang in there! I know it feels like forever and emotions can run the gamut. With my mom passing in 2010 and my dad passing just over a year ago, I have enough time and space to be able to look back and feel good that their wishes were fulfilled, that they wanted to live their lives out in their only home.
I'll always have a bit of regret, guilt and/or remorse that I didn't do enough for them, but at the time, I did my best. I got some help and support, which made it easier, and with the small amount of experience I got from my mom's long battle with cancer, I did a better job at asking for help earlier when it came to my dad and his remaining years, months, and days.
Even though I felt like I was stealing time from taking care of my dad in order to do something fun for myself, it was critical and saved me from totally losing my marbles. And yeah, it's okay to lose it once in awhile, melting down to the core and regrouping once again.
Lean on your friends, lean on us...
'little' opportunity that arises to get 'out' or away. Right now, after a decade (and my mother getting older @ 87), I made a very huge and quick decision to go to Europe (soon) with a tour group (because the opportunity came up)... Sure I feel scared now that my mother will be left for 11 days without me, but I've tried to 'cover' all my basis with the neighbors, friends, etc. to take care of her while I'm away... Then, I plan to call (absorbent calling costs to the US) every day and talk with her to see if she's ok...and, how things are going... My stomach/heart is always heavy but I know if I don't 'try' to 'be' myself, I will only spiral downward. Our birthright is to live 'our' lives and be happy just like anyone else.
It takes help and support from others to get ourselves on a better track, to learn better ways, etc. NO one can do it entirely alone, much less for years at a stretch without respite.
Unfortunately, our systems, and the good-hearts who work for those, too often MISS signs and symptoms of caregiver burn-out, and offer Nothing to help; in fact, too often those agencies and helping organizations, fail to help, and often make things worse by piffling off the caregiver's calls for help.
Far too many people are falling through cracks in our systems.
Aging Care here is a great help. It has literally helped pull both of us back from the brink of the proverbial cliff. We've both lost a LOT of ground, health wise, but, at least we didn't fall Off that cliff!
Here might be another useful help:
It's a support site for those w/ anxiety and depression.
Some might think this is Not the right approach for stressed-out caregivers, BUT, it MIGHT BE!
Caregivers are too often depressed to start with. 24/7 caregiving under the same roof as their charge, or even caregiving one who's in a different home, can be deadly to the caregiver.
Apparently, this site offers an online diary? If it does, MAYBE that could help some caregivers in their task to keep a diary to help protect themselves legally, and, help themselves track what's going on how often, to help put things in a better [?] perspective.
http://www.adaa.org/finding-help/getting-support/support-groups/online-phone
Anxiety Social Net Website: anxietysocialnet
Details: Social anxiety support; free: LIVE CHAT; Anxiety Q&A; DIARY; SUPPORT GROUPS; Media Sharing; Anxiety Blog
Hope this might be helpful for others!
We even added 'unlimited long distance calling' to her phone plan for 4 months - she has a regular phone - and she never called anyone the entire 4 months. I know, I pay the bill! I reminded her that she had the free calling and that she should call her friends - at that time her BEST friend for over 60 years was still living - and would CALL HER every month - but she would never call her back.
So, I am not sure it is all about not having anything to talk about. There are always good times from the past to talk about............ a good book you've read ..........a crazy TV show you've seen. Anything. But, I think it is just 'easier' not to bother.
DO REACH OUT to others - I know it is hard. I find it easier to do it via email and do that every day at least once.
I am so tempted to tell one of my neighbors who talks down at me that if he can't address me with respect, then don't talk to me at all. If he were not a friend of my mother's, I would. I keep my mouth closed out of respect for her.
Sometimes, taking charge of your physical environment can lead to better emotional health. (From my own personal experience and doctor's advice).
Take some care today, then plan to follow-up in the next few days....
Explanation needed, then 'they' won't hear or agree with:
He can hear, takes 1-2x to get his attention, delayed response, repeat yourself, like a xyz parrot!!! Then, he may or may not act like you even said anything, or more like you don't exist.
Since others don't live with him 24/7, he is extra focused for a short period of time on what they say. Have given up trying to explain aspergers to others who don't live it. Still, a challenge. Anyone try repeating self 3x or more when it is a habititual response for the person you are trying to communicate with says: "WHAT?"
Good for you! Joining the support group is a good move. Stay strong.
I hear people telling me how wonderful I am for being a caregiver but I too wonder what they are really thinking, and I think it is usually, " I'm glad it isn't me"......