Caregiving: I’m frustrated and exhausted.
My post tonight is nothing but venting and a bit of poor me. I'm caring for my husband with Parkinson's and Lewy body dementia. His daily care demands are exhausting some days besides taking care of our home, bills etc. and attempting to take care of myself which I'm not really doing very well. If I would have the listened to the nurse of 37 years(meaning me) I would have advised myself to go to the emergency room after being sob of breath and having chest pressure but no I needed to make supper, do meds, blood sugars, help him to the bathroom and be at his beck and call. I do feel better now but am so tired and I know he will call me at least twice tonight to help him. I know this sounds pretty mixed up but I just need to vent. Unless your living this no one really wants to listen. Including my own kids. It's impossible to even carry on friendships anymore, I'm unavailable when I'm invited which is becoming less frequent all the time
I don't leave him anymore unless it's to run a short errand. I had breast cancer and treatment last summer, I never skipped a beat. The day after surgery I resumed my daily care routine, drove 40 miles one way for radiation and still cared for him. I had carpal tunnel surgery in may, came home and took care of him. Like I said there is a bit of poor me involved tonight..i better quit for now. Thanks for letting me vent.
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@kimspr3 I am out of town, and on the road. I have been deleting posts the last two days and not responding/liking anything. But this thread really speaks to me, so please allow me to ramble. Years ago I was involved with someone, whose brother had rapidly progressing prostrate cancer. His wife wanted nothing to do with him, from daily caretaking to doctors appointments to future concerns. It was a terrible thing to demonstrate to their young daughter. I did his caretaking, in addition to a regular full-time job. I was very grateful that he allowed me to, as he was such a gentle soul and such a wealth of Life wisdom. Everyday I was grateful and thanked him for allowing me the privilege of caretaking. Because it was a privilege. He never failed to say thank you. That meant more to me than any thing else. So, to @debiobrien and @vickys know that those we care for may not always say it right out loud, a look, or smile of gratitude, goes a long way.
Ginger
Yes ginger you are so right. My mom and aunt are very grateful for everything i do for them they never stop thanking me and sending me beautiful cards in the mail. I have taken care of other family members that never said thank you in fact they were abusive towards me but i still did the best i could to care for them until their passing. but you are correct just a simple thank you, i love you is all i ever wanted... just to know they appreciate me and care that i am there taking care of them as they did when raising me as a child. its my turn now. unfortunately my brother or sister or cousins do not feel the same a si do but its ok i am all my mom and aunt need we are good. some people care caretakers and some are not.
These messages have made me think, too.
We have both been saying thank you, and you’re welcome, more in the past week, and we have both been different. Cause and effect? Chicken and egg? I don’t know...
I’m in the 4th year of caregiving, for MSA-c and advanced prostate cancer. I learn something new about myself and my circumstances almost every day I think.
Hi @kimspr3 Wonderful to get your perspective here! It is invaluable! As a caregiver I rarely thought to look at my efforts through the lens of my wife's eyes. And I should have! You speak well of this situation and I envy you for that!
I hope others chime in from their perspective as patient! It is super valuable!
I know I often wondered if what I was doing was enough, good enough, or if it was appreciated. You have given me some validation on my efforts and how my wife may have viewed them
I cannot thank you enough! How are you doing these days?
Thank you, @vickys I will have to look that book up! Sounds like a very valuable viewpoint and I look forward to reading it!
Thank you again!
It’s a chapter in life.
We’re, many of us, going through this earlier in life than many our friends and other family members will. Some may never. But we will forever be different for it.
And for those of us who are married and providing care for our spouses: well, of course we do.
And I should add, the same is true for those of us who are caring for parents, siblings, friends. We do it because it needs to be done and because we can. And we are different for it!
we are forever different and i will always carry it in my heart knowing i did all i could for my mom and aunt once they pass. no one else in the family is helping but i know i did what was right and what i wanted to do for my mom and aunt. sold my home and gave up friends and everything to move here by them to watch over them and take care of them. I know they would have done the same for me.
Hello Vicky, We do become different and learn from it. But at times hurt. Years ago a friend had Leukemia. She's good now! My choice, He mother was so frighted she would loose her daughter. Husband and I listened, became close, I loved her so much. Spent time with her. So was upset over her family arguing over my friends care. With her permission I called American Cancer Society, how to help them. With her permission they contacted the family. I'm telling this for a reason. My friend the daughter asked me to put makeup on her we had fun. I did the laundry for her children, helped with the dog, had her children for dinner. Hospital is in NYC so a friend and I drove there twice a week. She has a great sense of humor, it helped a lot!! I took care because I wanted to no one asked me. After she was in remission, still is, Her brother gave her a Hugh 50th Birthday Party. Friend and brother called people up to thank them, I was never called. It hurt me a lot, I got over it. My husband was lived but calmed down. I know I did the right thing and NO ONE can take that away from me. If it were not for my friends health I would never have gotten so close to her Mother. I called her my second mom. When she passed away I lost that extra special person in my life. We stayed friends but not in the same way. No accolades, a hug.
I think it's in our DNA. I don't know if you read what I said, chosen one in the family. There is always that one family member that takes on the responsibility of caring for a loved one and not so loving loved one. My family did not help me with my mother including my daughter. I guess the me and I generation. Wishing you a good evening.