Caregivers for their parents ...
Linda of Visalia, CA:
I don't know how long my health is going to hold up, but I don't have time to think about that, also having no medical insurance is very scary if I did get sick. I just don't have time to think of those things though. I get 16 hours a month respite care which I feel is not near enough. I am very peticular about my dad's care and go way above and beyond his care needs. My story is way too long to write about maybe someone, somewhere will understand my story. thanks for listening for now.
Anita of St. Paul, MN:
By the second year, I was quite exhausted. I was awakened 5-6 times during the night to assist her, and trying to keep up with my other responsibilities. We were able to obtain some Hospice services. That allowed us to get a hospital bed, and some other equipment, at no cost. I was frustrated that we could not receive more assistance through Medicare.
As my mother's condition deteriorated I was becoming more exhausted and frustrated. Finally, on Mother's Day 2000, I did the most thorough introspection and realized that while I had been providing my mother with a home and family, my time with her was primarily caregiving. We had minimal quality time. I did what I should have done much sooner. I took a leave of absence from work.
It was the best decision I could have made. It provided me with some time to take care of myself, and time to take my mother on walks to the park or a coffee shop, spend time with her watching a favorite show, and I was more relaxed when I provided her cares, whether it was putting on lotion or fixing her hair. She died the following September. I would do it again without question. I think that our priorities as a country have become twisted, selfish, and at times obscene, and contradictory. At the same time we cry "pro-life" we are willing to hide people away in institutions who are elderly, sick or have disabilities.
As the weeks turned to months, my 3 month leave of absence from my job was upon me. I was unable to give a date for my return. How could I predict when my mother would die? It could be a week, two weeks or a month. By that time I had become so comfortable and at peace with the decision I had made, there was no question what I would do. I stayed by my mother's side the last weeks. Quit my job. When she could no longer get out of bed, spent most of her time sleeping or with her eyes closed, my husband and I set up a table in my mother's room and ate our meals with her. We turned the TV to her favorite programs or played soft music. I slept in her room, held her hand, invited over friends that were unsure what to do. I am forever thankful for this part of my life experience.
Wendy of Santa Monica, CA:
Cynthia of Cleveland:
Becky of Douglas, GA:
My question is this-how can I get financial help for the money I am losing by not working? She does earn some money from Social Security and Retirement. I have tried some government and state resources -- they tell me she brings in too much income to qualify for help. How can $17,100 support two grown adults, especially since one has a lot of medical expenses? It can't be done.
"L" of Detroit:
Margaret of Springfield, IL:
But in April of 2001 her funds were very low and I was forced to place her in a nursing home. She has been a resident in 6 since that time and I can tell you they are all bad -- mostly due to understaffing or poor managment by administration. Our beloved family member has to experience abuse, neglect and horrible indignities that are intolerable and epidemic.
My advice is, if your loved one has any assets use them for home care. There is no reason for a mobile individual to be in a nursing facility. And the immobile will be grossly neglected. Bedsores, poor diet, no exercise and lack of activites is just the tip of the iceberg. The worst tragedy is the lack of respect and compassion.
Michael of Charlotte, NC:
Even though I come from a large family (five sons), only one helps. To the rest, and to most people, we might as well be lepers. People with young children do not visit anymore, even older friends, who certainly have their own problems, seem afraid of 'catching' a stroke. I knew I was in for a tough job, but was surprised at the attitude of others.
Denise of Southampton, PA:
But the chemo, the radiation and the surgery left her extremely debilitated. Her osteoporosis worsened exponentially, and her gastic system (from the surgery to remove part of her esophagus) was never normal again. Chronic and acute pain were her constant companions through the day, and through the night, when she wasn't sleeping. Tube feedings, diarrhea, vomiting, fainting spells, spontanous fractures, dangerously low blood pressure and blood sugar, respiratory degeneration, arhythmic heart, depression, anxiety, and pain, always the pain. All were the legacy of the treatment that cured the cancer. Ultimately, she developed vascular dementia, which, although similar to Alzheimer's, is much less understood, and has a much more difficult progression to predict.
Still, Mom's greatest fear was that I would put her in a "home." Fortunately, with the exception of two brief (2-3 week periods), I never had to. It was difficult, but I was able to get her into home-based alternatives, state funded, both in Texas, where we lived in the beginning of her illness, and later in Pennsylvania, where I had relocated for a career opportunity. Ultimately, when the availability of health-care workers dried up, and her condition worsened to a degree that the end was in sight, I resigned my job to become a full-time caretaker.
Mom died June 10, 2001. It was the hardest day of my life, and the pain lingers daily in my heart. But I have taken some comfort in knowing that she was at home, where she would have wanted to be. (In the end, she didn't really know where she was. Or, for that matter, who I was.)
I hope eventually to be able to bring the level of care that I tried to give my mother to others through elder care law reform. I am currently in law school, with elder care as my ultimate goal.
My prayers are with everyone who has a loved one in declining health. People used to tell me that I was an ideal daughter to care for my mother the way I did. What they failed to understand, despite my efforts to explain it, is that it was my joy and my honor to care for this woman who had given so much to me.
Marilyn of Rock Hill, SC:
Sam of Simpsonville, SC: