Caregiver Stories

The following are true stories sent in by today's caregivers.

10/14/02

I am currently taking care of my grandparents who are living down near Sarasota, FL. I live in Boston, so it has been hard for me to be by their side and address their problems of aging as the years go by. One of the biggest problems they are facing is prescription drug bills. They don't have health insurance and take 19 medications between the two of them for arthritis, blood pressure, cholesterol, breast cancer, etc. It has been very difficult for my sister and me to help them pay for the medications. However, we just started using a company called Canadian Discount Drugs to get their medications cheaper from Canada. The company requires a prescription and the prices were about 50 percent less every three months. I had heard of getting medications from Canada but I had never tried it...but the cost was just getting too high. The people were real nice and the medications arrived in the mail with all of the proper labeling. This has been a true blessing for us and I recommend it anyone else in our situation.

Alvin Cornell
alvincornell@yahoo.com

10/6/02

My 78 year-old mother has had 4 or 5 undiagnosed and untreated strokes over the last several years. My father explained all of the symptoms as old age. Last year she had a stroke while in my company and I took her to the hospital. My father was angry and has remained so. She was discharged to hospice care. After 6 months she was dropped due to her improvement. It turns out that my father had been and continues to withhold treatment and rehab services for her based on a medical power of attorney. I am unable to discuss the situation with her physician on Dad's orders. He often comments if she were 70 instead of 80, he might allow her to receive treatment. By sheer force, I have ascertained her diagnosis and disabilities to be stroke related. She feels she would like to try some rehab but my father is adamant. I find it impossible to have a conversation with my father as he becomes angry and says it is none of my business. I spend 2 days a week with my mother and even the fact that we seem to enjoy our time together laughing and talking (I seem to have more success communicating with her) makes Dad angry. While I have no illusions that my mother will experience more than a modest recovery, it breaks my heart to wonder if she might not benefit from some language and occupational therapies, taking some of the pressure off Dad and making the time she has left more enjoyable for everyone. Has anyone any suggestions for breaking through this wall of anger and stubbornness?

Debby Acuna
dka50@juno.com

10/2/02

My 75-year-old mother is suffering from clinical depression. It started three years ago after a diagnosis of high blood pressure and subsequent medication. I thought the depression was a side effect of that medication but after two changes in meds and six different types of antidepressant medication (she is currently on Effexor and Wellbutrin), there has been no change. She and my dad have just moved in with us because we were worried about the effect her condition is having on Dad. I don't think her psychiatrist has been very helpful and she refuses to go to counseling. While she has always been a "glass half empty" kind of person, she always had interests in hobbies, traveling and keeping up with far-flung family doings. Now she cries a lot, has insomnia, can't stay focused, is all doom and gloom, doesn't know why she is still alive, etc., etc. Any tips would be welcome.

Loretta
colcwarner@msn.com

9/25/02

My mom has always been unusually sharp and aware of her environment, although she has always had a distinct lack of skepticism. She has lately developed a notion that there is a man "spying" on her and that he has installed secret cameras in the house. She is especially concerned that he is watching her bathe, dress and go to the bathroom. In every other respect, she seems as sharp and "normal" as usual. I haven't been able to get her to go to the doctor to be assessed for dementia, as she truly believes this is happening. I feel frustrated and helpless. Any suggestions would be welcome.

Alissa Maddren
amaddren@charter.net

9/23/02

I am an only child with elderly parents living in England. They are very lonely and long to end their days being near me. I am consumed with worry and guilt about caring for them. Does anyone out there know how I would begin to get them here to be near me? What is the first step I take? How do I get health coverage for them? I'm grateful for ANY suggestions.

Susan E. Kane
bobnsue@usa.com

9/21/02

My mother is 74, lives alone, and recently lost her eyesight (90%). I am trying to convince her that an assisted living setting would help her more than the limited time I can provide her with. I left my job of teaching (12 years) to stay home and care for her, but must maintain a part-time job that helps with bills. What is a good way to handle this? Any advice would be good. I need to tread lightly.

Andrea Cabral
anjbabe64@yahoo.com

9/21/02

My father is 86 in failing health. My brother and I are the main caregivers of Dad. I am the primary caregiver and my brother relieves me on the weekends.

Mary Ann Fazakerley
smafazakerley@att.net

9/19/02

My mom is 85 and owes over $18,000 in credit cards and two $20,000 second mortgages on her house. She is addicted to pain pills and cannot be alone. I live 4 hours away. I am trying to keep her from losing her house because of her debts. And get her into assistant living.

Peggy Mertz
dpmertz@cox.net

9/18/02

My mother is 60 years old. In 1985 she was diagnosed with a brain tumor. For her first surgery, she picked a real quack to do the surgery. Because he was drunk, he only removed half the tumor; a year later it was back bigger than before. The second surgery went very well, thanks to the wonderful doctor. But because of the first butcher job, my mother was left with some problems (double vision, slight paralysis, tendency to sleep for days at a time).

I was 15 when she had her first surgery; from that time on I had to learn to do for myself, which was fine. As the years went by, the problems got worse, but she was still able to somewhat care for herself, although she could not drive and handle some household chores. My dad was there but he worked a lot, had to meet the medical bills, etc. My only brother was killed in 1992 by a drunk driver. Of course this took a toll on both my parents. I only thank God for my son (born in 1990) who became their will to live. In late 1997 early 1998 things were rapidly changing.

It has been almost two years now that I have been caring for her. My husband is wonderful; he helps me as much as he can and I have a sitter that comes in 5 hours a day, Monday - Friday, which is a huge help. But since she needs round-the-clock care, it get rough; add a new baby girl to the picture (born in April) and three boys, 8-12, and it gets downright tiring. I need a long vacation. If anyone has any suggestions or knows of any agencies that can help, please e-mail me. I take comfort in the fact that I'm not alone in my dilemma. Thank you for sharing your stories.

Julie
nawlinslady1970@aol.com

9/15/02

I am 45 years old and take care of my 79-year-old mother who has been diagnosed with vascular dementia and also has macular degeneration. There has been memory loss for the past three years, but only last year did things get worse. On January 1 of this year, she no longer knew where she lived, and most of the time doesn't know who I am. I get so frustrated being the only child. I never know if what I am doing is right for my mother. I tried to get her to go to day care a few days a week so I could do things I need to do, but she would have none of it. Now I have an aide who comes five days week for two hours. At least I am able to get out. It helps. The only problem is that my mother seems to be worse when I come back. I know things will only get worse and I dread that day when I will have to put my mother somewhere.

Thank you for hearing my story. It helps to write about it.

Nancy Page
chefnp@aol.com

9/14/02

Well I'm the granddaughter; both my parents have passed away from cancer leaving my Grandmother to me. I love this woman with all my heart and moved her into my
home with my husband and children fully expecting that
there would be some problems as she is quite
independent and resented being moved after my mother
died.

Three years later she has managed to reek havoc in
my home. She drinks every day. We do not supply it and
have forbid it in our home, so if she doesn't have a
caregiver take her out, she calls a cab and goes by herself. I have gone through several agencies and dozens of
caregivers. I have told them all that they are not to
take her out; they do it anyway. My gram is very quick-witted and could talk a snake out of its rattle.

Tonight when I got home, she was not here. I didn't know
where she had gone. At 7 pm, the door opens, and a very drunk gram and an angry Taxi cab driver come in. He has
the nerve to lecture me about LETTING her go out. By
the way, did I mention she is in a wheelchair and has
epilepsy. I don't know what to do. Everyone says put her
in a home. I can't afford to put her in a retirement
home; she doesn't have enough income to pay for anything
and I was told that if I go to court to take custody
of her or have her made a ward of the state that I
will become responsible for her considerable debts,
which I can't do. Plus that's not the future I want for
her.

She is 87 years old and all I have left. I want
what's best, but she is destroying all relationships
within in the family nobody wants to even talk to her
this makes me so sad. Also she has become a danger to
herself and my family because she has set two fires in
my house while drunk. The first caused no damage; the
second one, my 16-year-old daughter found and put out with the hose but not before burning a hole in the floor
and scorching the walls, all the while she was unaware
on her bedroom floor. If anyone has any suggestion, it
would be greatly appreciated.

Cindy Schalles
goneballooning@yahoo.com

9/11/02

When Mom divorced, there was no such thing as child daycare as we know it, so we moved into her parents' house so she could return to work. Because we lived there, I wound up as one of my grandmother's primary caregivers for 7 years after a stroke in her late 80s, while I was in my teens. That was way before people thought about caregivers' support groups, and I was left with a high level of resentment in losing all those carefree years, when my cousins didn't lift a finger to help and rarely visited. For years, I jokingly told my Mom that I'd pay whatever it took for her to be in a good facility, if or when she needed it, but that I couldn't deal with her moving in with me, which she totally understood and we both laughed about. Unfortunately, when Mom's cancer spread earlier this year, it was just a "given" that the elderly sister who moved in with her upon becoming widowed, would move to my house. Neither my Aunt's step children or grandchildren, or my cousins, offered to help out during the move.

My Mom's passing left me with enough of a nest egg to retire from work, and I fully intended to relocate to a less expensive, more laid back shore area; those plans are now on "hold" because my Aunt doesn't want to be near the shore and as a cancer survivor herself has too many medical ties to this area to want to move.

While she's alert and keeps track of her finances, she's extremely hard of hearing, and has "used" that for years as an acceptable way to have Mom and now me act as intermediary for her with doctors, stock brokers, banks, etc. As she has significant assets, that can be a time-consuming job.

My biggest problem is that she sees herself as more self-sufficient than she really is, and is unwilling to make many accommodations that would lessen the burden on me.

For example, her expenses are minimal compared to her income, making her an excellent candidate for long-term nontaxable investments, but she has dozens of short-term investments which require research and bank trips to have them renewed or changed upon maturity. She likes "doing" that, but I'm really the one who actually does everything.

She "complains" that I do everything for her, and that she wants to help around the house, but everything she touches manages to break or not to work, something Mom complained about since her sister moved in with her. I know she means well, but other than saying I don't mind doing things, I don't know what to say without hurting her feelings. I can't afford to be fixing plumbing and buying new appliances, just so she can feel useful!

I also find it very frustrating that she doesn't want to deal with the reality of her aging and death; which God bless her, my Mom took care of when her doctor told her she had little time left. My Aunt's will lists her now-deceased two younger sisters as executrix and back-up, and describes bequests differently from how she's explained them to me verbally, but after urgency of handling every family loss, she buries her head in the sand again. I thought having my own will updated after Mom's death, so my Aunt could meet our estate attorney, would at least get her to update the executors, but she already put the "mess" of settling another sister's estate out of her mind and declined to update her will.

I also resent that her will leaves 80% of her estate to her late husband's grandchildren, although they haven't made any attempt to visit or help her, since she lost two sisters within a 6-month period. Since she had no children of her own, she likes to think of them as her own grandchildren, although her husband's kids were grown by the time she married him. Since one child is married to an accountant who's done her taxes for years, they're well aware of her net worth, and I have little doubt if it weren't for that they wouldn't even bother to write to her periodically.

I don't want to treat my Aunt like a child, although laying down "rules" for living in my house , i.e. having two living executors named in her will and a medical directive in place would make my life easier. If I hadn't felt under-the-gun time-wise during Mom's final illness, the intelligent thing would have been to discuss the options and costs for my Aunt to move into a senior- or assisted-living facility; she currently gives me the same amount she gave Mom for "room and board," which is less than 1/4 what her expenses would be in a facility. Even a suggestion of her moving to a facility now, without her requiring additional care wouldn't be taken well by anyone in the family. I don't doubt they'd all expect me to bring in nursing help, rather than move her to a facility, if it came to that, which I'm not prepared to do.

I'm really not coping well with these issues, and am getting tired of unloading my resentment on friends who'll listen. The one caregivers' support group I've seen advertised is at the other end of the county, so I'm hoping to find something closer to home or on-line for support.

Eve R. Hershkowitz
HershkowitzE@aol.com

9/9/02

Wow! Where to start? We had to put daddy in assisted living last January. He has Level 6 dementia and is going through the "anger" phase now. But we are getting into a familiar routine now. Some days are better than others. I just take it one day at a time. And remember God is in control. Some days I forget that. I am writing a journal to help me deal with my feelings and hope to share it with others some day.

Thanks for listening.

Mary Ann
mmtillman@mo-net.com

9/8/02

My mother was diagnosed with Alzheimer's 2 years ago. I live in Illinois; she lives in Colorado. So far, the worse part of all this is the distance between us. My step dad is the main caregiver. He is 81 years old. I have a lot of frustration at this point in time as I have set up different types of care, i.e. home care and day care, but my step dad is reluctant to use these agencies. He assumes my mother will not like the day care and he is not yet interested in home care. My mother is beginning to wake up in the middle of the night and stay up for a few hours in an agitated state which creates less sleep for my step dad. He has called me in a panic saying he will transport my Mother to me and I can find a home for her, then he calls again settled down saying, don't worry I will take care of her. It is so hard to help him 1,000 miles away. He has only gone to one support group meeting and isn't really interested in more.

Steph
Larsteph70@aol.com

9/8/02

My mother is 96. She has dementia, she will not let anyone come into the home to help her. She has been told by the doctor she can't live alone. We have tried to get her to go into assisted living. She will not leave her home. She does not eat; she weighs 80 pounds. She is disorientated, tells stories we know are not true. She thinks everyone is out to get her. We live a long way away from her. We have found no help. The doctor won't or can't put her in a home. She calls about lost objects. She can't care for her money. We need help from anyone who can or will give advice. We have durable power of attorneys. We are told we can't use them. Our greatest concern is for her safety.

Cynthia Drieth
Cadrieth@aol.com

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