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I facilitate a men's caregiving support group. Twice a month 5 to 10 male caregivers gather around a table finding support in one another at a time when it can feel like no one understands. It is here they find companionship when isolation can be a problem. The men listen and learn from one another.
I remember Joe. Joe had been a caregiver for his wife in their own home since her diagnosis of Alzheimer's disease. Joe frequently looked to the men in the group for answers to the difficult situations that impact all caregivers. I imagine Joe was apprehensive at first, as are many men.
He was a quiet and reserved gentleman and probably felt most comfortable handling his affairs privately. But somehow Joe found his way to the group and continued to come for several years.
I clearly recall valuable lessons that Joe taught all of us. He reminded us that to care for a person with dementia meant helping them to maintain their personal identity and sense of dignity. I remember Joe telling the group that when it came time for him to help his wife with her hair, makeup, and clothing, it was important that he do it 'just right' because his wife was always particular about that sort of thing.
And when Joe started looking at day programs for her to attend so he could have a break, he looked for a place that was "pretty" because Joe said his wife always liked the things around her to be pretty. For Joe, caring for his wife meant respecting her for the person she had been and the person she was at any given time.
What I valued most in my time with Joe was observing the transformation that took place within him. Over time, he learned something very important in the lives of caregivers. Joe accepted that asking for help and support was not the same thing as being needy or dependent.
He recognized that it was only by asking for help and making use of available resources that he could provide his wife the best possible care. Joe is a reminder of the humble and caring act of accepting help.
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You are an angel to your mother. My mother suffered a fall injuring her shoulder at 86 years old. I took it upon myself to help her with her dr. appt. and food shopping for 2-1/2 years. During that time, I would call or text my sister and brother to let them know if mom fell again, her Dr. appts., etc. I kept them uptodate on her condition. Not once did they offer to come be with her so that we could talk to her about an assisted living arrangement. They did want her to come to their homes, but she insisted that she stay in her own home, which meant I would continue to come to see how she was doing, etc. at least twice a week if not more. Then it happened. She hurt her shoulder again and wanted to get x-rays. We went to the hospital at which time I thought maybe she would be admitted. She had congestive heart failure, but was doing well and didn't even have a cold for the years I was taking her to the drs. etc. We used to laugh about it and she would say I was taking good care of her. I did not confine her to her home which has a porch and she could sit outside on nice days to talk with the neighbors. I believe she was frightened and knew her age was catching up with her. After Valentine's Day when I asked my brother to go see her (he was her favorite child), I had to call him 2 days later after having not heard from him about his visit. Oh, she is fine, he said. And then he began to talk about himself and how wonderful a cook he is. What about mother
Laurie, my husband is 75 and I am 44 .....welcome to my world. Age also has never mattered, at least not to him or I. Some people have no idea the things we go through, the comments like " is your dad ok ? why does your dad do the things he does ? , well my comment is this> He is not my dad, but he is my husband and I love him more now than the day I married him.He definitely is not the same man I married 11 years ago , but I still love him. This disease has robbed him or better yet, both of us , from living the life we had planned, yet I will not leave him. There are days that come and go when I do want to say the H... with it but I can't leave. Marriage is for the good as well as bad. Thank God we have a child together, because our son is MY future and my HOPE. Life will go on and hopefully someday this disease will have a cure. Peace to all the caregivers out there, you are angels to your loved ones. Continue on and fight for the dignity and respect that we all deserve as well as our loved ones too.
THIS IS A DEVASTATING DISEASE. I HAVE BEEN TAKING CARE OF MY MOM FOR ABOUT SIX MONTHS. I HAVE ONE SISTER BUT SHE DOES NOT OFFER TO HELP WITH MOM AT ALL. SHE ALWAYS MAKES EXCUSES ABOUT WHY SHE CANT HELP. SHE HAS STAYED AT THE HOSPITAL WITH HER TWO NIGHTS IN THE PAST SIX MONTHS.MY CHILDREN HAVE THEIR OWN FAMILIES SO THEY DONT GET TO HELP VERY MUCH.I FEEL LIKE I AM ALL ALONE WITH THIS DISEASE. NONE OF MY GRANDCHILDREN WANTS TO BE AROUND HER BECAUSE SOMETIMES SHE CAN SAY MEAN THINGS TO THEM. SO THAT CUTS ME OFF FROM MY PRECIOUS GRANDKIDS. SOME DAYS I FEEL LIKE I CANT GO ON MUCH LONGER LIKE THIS, BUT I DO.HER DISEASE CONTINUES TO GET WORSE. I PRAY EVERYDAY THAT I WILL NOT COME TO RESENT HER FOR CHANGING MY LIFE DO DRASTICLY. MY HUSBAND HAS BEEN WONDERFUL AND VERY SUPPORTIVE FROM THE BEGINNING. I JUST DONT SEE ANY CHANGE IN MY SITUATION IN THE NEAR FUTURE. IF ANYONE HAS ANY ADVICE I WOULD GLADLY ACCEPT IT.
my husband is much older than me almost 83 i'm 51. when we met 17 years ago there was no age difference. i knew what i was getting into but i love him very much. now with his "alzheimer type dementia" i feel very alone. i have no support. i wait on him constantly & do everything. i'm burnt out, lonely.
Shelly, good for you. Karma is a wonderful thing! I'm not the main care giver for my father but I visit as often as I can physically and mentally travel the 3 hrs. I want to give mom as much support and time off as I can. I have fibromyalgia, have had surgery for herniated disk in my neck and have bulging disk in my back. I also work full time at a stressful job. So I feel your pain literally. What do you do to separate from it all?
Dear support group and Joe's story. My mother has dementia. It truly is the most hardess crisis to deal with. I truly beleieve we all have history to our life that should be known. all of the many love ones deserve the utmost dignity and respect still be treated as a human being not just some person that won't remember from minute to minute to hour to hour day to day. I have 2 siblings both in there late fifties that don't even care about mom. They don't call visit or really even know if she's still living. Shame on them. I believe in karma. All they think about is themslves there integrity there position in life as an executive's. I am the youngest and am permanently disabled for the last 8 years and to take care of my mother. I suffer from severe migraine headaches lasting 4 days at a time vomiting and basically live in a black out room. amoungst that I've had 2 major back surgeries and also have a disease of the cervical spine called cervical mylopathy. My whole family knows of my disablites yet never bother to help. relieve me. All I get is calls to tell me when and were there are going vacation. I beleive my mother gave her life for me and I sure would do everything and anything for her. She's as beautiful now as ever. I feel for us all that we do as caregiver's but most people don't whats it's if they haven't experienced it even in the smallest way. I need help now with mom but don't have the finance's it takes today in this world.
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