Caregivers for their parents ...

Linda of Visalia, CA:
I have been taking care of my dad for two years now 24/7 without having 24 hours off as of yet, I feel so burnt out, but I will not give up. I feel I have a lot of selfish family members who could help me but refuse to and say they are too busy. I have always been close to my dad and have sacraficed a lot of my life for him; why I do it is still a big question for me to answer. The doctors say he should have been gone a year ago, but for my care he is still here.

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:
In 1998 my mother was diagnosed with primary brain lymphoma, terminal brain cancer. My father had died 10 years ago so my mother was alone. There was no question in my mind that she would not go to a nursing home. I was fortunate that my husband agreed. So, we fixed up a room in our home for her. After completion of full head radiation and the typical therapies, there were no other "treatment" options. It was a matter of time and her physical and cognitive skills would deteriorate. I was working part time, doing volunteer work, and caring for my mother. As her condition changed I arranged for some day care for her as she was unable to be home alone.

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:
The most important thing you can possibly do, for yourself and your loved one who is suffering with Alzheimer's, is to embrace each moment as if it is independent of any and all others. Celebrate the instant. Find surprise in the fact that the moment before was not the last. Figure out a way to learn something about the person you love at every turn. You will discover a new level of love within yourself. And it may relieve a lot of your stress.

Cynthia of Cleveland:
I take care of a father and brother that both need 24-hour care. I had to leave my job so I put an ad in the paper to find work at home. I did that for 3 years but now I'm out of a job again. I've done everything I can think of to find work at home again but nothing. I'm being buried alive and scared. if anyone know of anything that might help me please let me know.

Becky of Douglas, GA:
I am responsible for the total care of my elderly mother, who is 81 years old and permanently disabled (in a wheelchair). For this reason, I have found it difficult to work a full-time job. I am currently going to school, but that will have to stop after the holidays because of my mothers condition. I need to be home 24-7 to monitor and help her with daily tasks.

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:
I have an aging parent that I care for because she can no longer stay alone. There are 4 of us children, but no one has time, so I have no help there. I'm not working at this time because of this. My mother has her own income and I have requested from probate court to be paid for a caregiver because I have bills to pay and I'm trying to keep her out of a nursing home as long as possible. Probate has allowed a caregiver service to be paid $18 per hr. and I'm now requesting half of what the caregiver services charge, but probate won't allow me to be paid because I am a relative. Soon I will have to go back to work and will have to put her in a nursing home because of no income coming in. Isn't there something that can be done where I can get paid as a caregiver -- this is a 24 hr., 7 day a week job?

Margaret of Springfield, IL:
I used my Mother's assets to care for her in her own home for 3 years. It was very costly as she had to have 24 hour a day caregivers. Some were LPN's and CNA's and others were just good folk I trained myself with home visits of health nurses and therapists. I also took them to Mother's doctor appointments and had the physicians instruct them on certain aspects of her care. She did thrive and I was the substitute in case of illness and resignation.

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:
I've been taking care of my mother since her stroke almost four years ago. Originally I was helping my father but he wore out and passed away early in 2000. When he decided to bring my mother home, I quit my job and promised to help. I had seen the nursing home she had been in, and cannot let her go back to such a place.

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:
My mother was the light of my life. We were best friends, and had always lived together. When she was stricken with esphogeal cancer at the age of 76, we both knew she could fight it and beat it. And, theoretically, she did.

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:
Your program just aired and I watched in tears. I was a caregiver of my Alheizher's mother for 12 years. The memories flooded back but what I am feeling right now is just missing her so much.My mother died 4 years ago. As good as the program was, until you have been in the caregivers shoes, you can't imiagne what you go through. After it's all over, there is such a void in your life. The part of your story that got to me was the grandchildren helping with the care of their grandfather.That was like looking in a mirror at my own children. WOW.....the emotions I am going through right now! Thank you for speaking out for our elderly!

Sam of Simpsonville, SC:
I was mesmerized by the program tonight! For the past year I have been solely taking care of my parents ... Mom who is 80 and has lung cancer, and Dad who is 86 and is just OLD! My only sister offers no help what-so-ever, even though her work hours are less than mine, and her work load at home is not as heavy (has a husband to do help around the house). I'm doing all of the caring for the folks, plus running a business full-time, running all the household operations, am active in my church and civic organizations, and now am totally concerned as to what happens if "burnout" occurs ... or worse!? The care I can give my parents is only as good as the care I give myself. So, tomorrow, I begin taking better care of me too!

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