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