http://www.aarp.org/relationships/caregiving/info-04-2010/your_parents_too.html
There was a discussion in the caregiving forum on AARP that received many comments.
Here is an excerpt:
I personally get fed up with hearing all about his bowel movements, or lack of
them. I am tired of hearing about his diapers. I am tired of every week or two,
him brining out another Rx bottle saying he needs a refill. I have asked him to
not eat in his bedroom, as we live in a semi rural setting and are prone to mice.
He continues to eat in his bedroom. He hides cookies in his room, so eat can
"sneak" food.
It does not seem fair. My wife and I can not go out to dinner, go on a vacation,
or even go to friends, because he will have a "spell"...When we were kids, our
parents went out without taking us kids along as it was for the "adults".....now
that we are adults, seems like we are "trapped".
If anyone has ideas or suggestions we are open!
Reply:
CNYPaul, I truly know how you feel. In 1985, my mother came to live with me after
suffering a mild stroke and having a adrenal gland tumor removed. When the drs said she
could no longer live alone, I offered her my home as a residence and home as long as she
wanted. At that time, she was in a state of early moderate Alzheimer's disease, suffered
from severe high blood pressure. had lost her sense of time. For awhile, I was able to keep
working at a job I loved. I hired women to come in and be with her while I was gone. They
would also serve her the food I had prepared for her the night before, or anything else she
wanted to eat. (No housework, just visit with Mom and give care.) While Mom's short-
term memory was very poor, her long-term memory was great. Her earlier memories
remained with her until her death while her short term memory disappeared altogether.
She remembered very clearly things that happened in her life from childhood until about
1948. She also loved to talk about her early life.
Everyone in the family had heard these stories hundreds of times and most did not want
to hear them again. However, with the momma-sitters, she had new people to tell her
memories to. She started looking forward to these 'visits'.
As time progressed, it became too expensive to hire someone for 12 to 14 hours a day, 5
days a week. I was able to change my working hours to 3 days a week for awhile.
Finally, I decided to retire so I could be home with her all the time.
In our county, the county government provided a free class for caregivers. It was held
one afternoon a month in a neighboring town. When you signed up, they provided a
worker to be with the person you were caring for in your own home so that you could
attend the class. That class was a life saver in more ways than one. The very first class
told us about the special needs the CARETAKER has under these conditions. They
pointed out the there needs to be a break at least each week for the caretaker to be
away from the family member and for the family member to be away from the
caretaker! Perhaps a day to go have lunch with friends, go shopping, or just go to a
movie you wanted to see. That day was YOURS (and hers) and had nothing do do with
the caretaking situation. Each month, they had another useful topic: nutrition, how to
identify the problem causing a patient to stop eating and what to do about it, watching
for signs of depression and how to keep the patient interested in life, legal aspects, both
while giving care and after death, patient exercise (especially when they don't want to),
skin care to prevent sores or bed sores, or infections. Yes, they even spoke about death
and dying.
There were sessions on making the home safer for the mobile person. One session was
on the resources availabe to a caregiver. Some of these services cost a little and many
were free to residents in the county, such as support groups. Throughout the 8 months
of sessions, the emphasis was on the mental and physical health of both the patient and
the caregiver.
When I started attending these classes, my stress level decreased substantially. Perhaps
you should check with community services, social services, Catholic services or your FIL's
primary physician to find out if there is something like this in your area.
What I learned in those classes prepared me for most of the changes Mom would go
through and helped me deal with the changes. As time passed, she had problems with
her vision, gradually developing into a state of legal blindness, then worse. She started
losing her vocabulary. When she refered to a 'bird', she might actually mean a mosquito,
a plane or a helicopter, or anything that flies She could no longer crochet or knit. She
could not follow a program on TV, or understand anything on the radio. Five years
before her death, I purchased a cocker spaniel puppy(Casey) for her. From the moment I
brought Casey home, the two were inseparable. She loved him and she came out of the
depression.. My mother, who believed dogs should not be in the house, even ended up
sleeping with the dog in her bed!
My mother died Aug. 13, 2009 after a short stay in the hospital. She was 96. In spite of
all the problems that developed, I am thankful we were together those 15 years.
Oh yes, If you decide to hire someone for an occasional day, I strongly urge you to check
out the caregiver companies, such as Comfort Keepers. They may cost a little more than
just hiring someone, but the people they send have been trained to deal with 'shut-ins'
and have gone through background checks. They are also there on time, and if for some
reason they cannot come, the company will make sure to have someone there on time.
Additionally, the occasional changes in caretakers was great for Mom's state of mind.
She had someone new to tell her stories to.
More blogs about caregiving…
Caregiver—Like a Frog in Slowly Boiling Water:
http://www.theglobeandmail.com/life/health/dementia/the-caregiver-like-a-frog-in-
slowly-boiling-water/article1715793/ (article)
Francine Russo Article: http://www.thirdage.com/caregiving/when-elder-care-brings-
back-sibling-tensions-0
Eldercare and end-of-life debates often hit families after decades of negotiating nothing
more serious than where to spend Thanksgiving. We can be grownups with successful
careers and kids of our own, yet all the old stuff ambushes us: sibling rivalry, entrenched
roles and resentments, the way our family talked or didn't talk about important things.
I was stuck in my adolescent role as the aloof achiever, defending myself from my
judgmental mother and other family craziness. As always, I deflected my sister's digs
about my not being around more — and I didn't hear her rising desperation. It wasn't
until my mom's funeral, watching my dad and sister cling to each other and weep, that I
got a hint of their long ordeal — and how badly I'd screwed up.
“Like being put down with your siblings in the center of a nuclear reactor and being
told—FIGURE IT OUT!”
As siblings who are often separated geographically and emotionally, we are having to
come together to decide such thorny issues as where Mom and Dad should live and
where they should be buried. "It's like being put down with your siblings in the center of
a nuclear reactor and being told, 'Figure it out,' " says University of Colorado
geropsychologist Sara Honn Qualls.
Read more:
http://www.time.com/time/magazine/article/0,9171,1955601,00.html#ixzz10POARPbd
Tradition of Caring: This video is about a family (one sibling has a heart condition, the
other cancer). Son talks about how as dementia progresses more and more energy is
required and they will not have that energy. Also, mother speaks another language—and
they are asked, “Do you want to have someone who speaks her language or someone
who knows about dementia?” Son says that should not be the choice we have to make.
http://www.theglobeandmail.com/life/health/dementia/a-tradition-of-
caring/article1709993/?from=1715793
Precious Time: daughter talking about her father (in his 50s) with dementia and the
daily challenges.
http://www.theglobeandmail.com/life/health/dementia/precious-
time/article1709991/?from=1715793