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| Karen and Her Mom |
Karen
and I met somehow in the Alzheimer's caregiver blogging world. She would write on my blog and I would
write on hers. She always seemed so lovely and was willing to let me interview
her.
Carol:
How long did your mother have Alzheimer’s and how did you come to live with
your mom?
Karen:
In total I believe that Mom had Alzheimer’s ten years or more while we lived
with her. I was 4 months pregnant with my son when my dad died and she went
right into baby-sitting. I got a divorce when my son was 4. Mom babysat for me
while I worked and my son loved her so when I divorced we got our own place but
my son wanted to stay with Mom. I figured why pay rent! Why not stay with mom
all the time! So we moved in with her. She told me once that my son saved her
life. She said she would have died without my son to care for! Mom and I were
best friends. It was perfect. I did not date until after my son was in college.
I just was so content with our life.
I drove a School bus and worked in the school kitchen when my
son started school, so we would have the same hours. He rode a different bus
than mine and Mom would be on the front porch at 3:00 waiting for him everyday.
When he started middle school, I started driving a transit bus full-time for
more money. I did that for three years. That is when mom‘s Alzheimer’s started.
As she got worse, my son would come home from school and find
her walking down the street or at a neighbor’s house and not really remembering
why she was there. As he got older she was not eating, not bathing and hoarding
stuff in her room. She called my brother and sister all day and me at work over
and over. My sis worked nights but she started coming over to care for her in
the day while I was at work.
Anyway she got worse and worse. After months and months and years
of decline she would not get up to go to restroom or do anything for herself. I
would get up at 4 am to have her ready for my sis to come in after work to care
for her. Then I would go to work. That
was not working for anybody. So I went back to being a part-time School Bus Aid. It just got worse. My sis was wearing down working nights
and here during day and I was too from being here the rest of the time and
working. My brother helped when we asked and he tried hard, but he is a guy and
he felt awkward with Mom’s personal needs. He had to work too. Finally I gave
up and became her full-time caregiver.
Carol:
So the caregiving role just developed over time and anyway you were living with
your mom. Your relationship with your mom seemed so mellow.
Karen:
The reason our relationship was so mellow is that I am the baby of the family
and my dad was a truck driver—we were used to each other and my sis and brother
were grown and gone seems like forever and it was just she and I. We were best
friends. I wanted to be with her more than with my girlfriends.
Carol: As the situation
changed with the Alzheimer’s entering the picture was it hard to maintain the
mother/daughter relationship?
Karen: Over time I
lost the daughter mom dynamics. I went from daughter to caregiver. I regret
that. I bossed her around so often and now I try to remember if I gave her any
loving and did I talk to her in her last stages? Or, did I just go through our routine of
sleeping, eating, bathing, getting out of bed?
Carol:
How long did you take care of her full-time after you quit work?
Karen:
About four years at the end of her life.
Carol:
You didn’t seem to have much of a break in your caregiving from what I can tell
on your blog. Was it stressful?
Karen: I
remember sometimes I would be so stressed I would get in bed with her and lie
beside her and just cry--wanting some love from my mom. But I don’t' think I
gave her enough love.
Carol:
Why
do you say that?
Karen: Mom
became like a child, and then a nothing--she was just there. NO words--never
moved. I had to do everything. I hope your husband stays hard to handle because
that means he is still “in there”. Hard on you, Carol, but better than his not
responding to you anymore, I think. Your
husband might be hard to handle but he still argues and talks back to you a
little so you know he still is thinking about stuff.
Carol:
I
am still fortunate after five years. We do talk and he tells me he loves me and
I tell him I love him. Our routines are getting past the stubbornness. He is
really not hard to handle, and I do have a volunteer caregiver neighbor who
helps out when he can.
Carol:
What
was it like—switching roles?
Karen: At
first she was very independent as far as paying bills and handling her money.
She wanted to keep taking care of money matters, but she was writing checks wrong
and not keeping up with the bills or losing them. So that was hard. I had to
ask her, Mom, do you want me to write the
checks for you? And at first it was no then later not now and
then she would say later for like months. Then she got to where she
would say yes. She always had to have lots of cash in her purse but was
losing it. She would want to get $500 out of bank every month but not take care
of it. She could not drive. Never did so and that was a blessing because
someone would have to take her to the bank. We finally talked her into just getting
$200 out. Very slowly she would give in to letting me do more. As the disease got worse, the more I could do
for her.
Carol: I
have taken clues from others. I happened in our case that when I retired from
full-time teaching, my husband fortunately turned finances over to me because
he would work for another year. I still compliment him for the fine budget
spreadsheet he set up that I follow. He caught me on-line banking and so I
write very few checks. At times he asks to be informed. Also taking clues from
others in the blogging community, my husband still has a wallet, a driver’s
license that he doesn’t use and a key to our car.
At one time you placed your mother in a nursing home. What
happened to bring her home?
Karen: We
could not pay for another placement. She had too many assets according to DHS and
not Medicaid to pay for bills--just Medicare. We lived paycheck to paycheck but
she had two houses and they had to be out of her name for 5 years before she
would be able to get Medicaid. If she had only had the one home I think she
could have gotten it. But one house was rented and so we would have had to sell
it and use up all that money before help. She did not want to sell it. It is a
long story but she gave it to my sis. And she gave her house to me. But not on
paper--just in the will. First thing we did wrong was not to get the titles
transferred officially. It is hard but you need to explain to your parents that
everything has to be out of their names and in yours for over 5 year now for
them to get any government help. And if you are not rich, you will need help or
have to live paycheck to paycheck like us. I cashed in my IRA and teachers
retirement to pay off any outstanding bills and we used her and my savings as
we went along when her Social Security check was not enough.
Carol:
Name some extraordinary stress you encountered living this way.
Karen: She
got so hard to care for that I bought a van with a wheelchair ramp and took her
into see doctor for years, She would yell and scream and it got harder and
harder. They put her on Alzheimer’s meds to slow it down and she was in the early
stages for years with slow changes. The
mid stages were about 3 to 5 years. The
last stages were around 2 more years. But it was awful. We had to do every
thing for her she did not help to do anything anymore. My cousin said to ask
for Hospice to come to house. I said, No,
she is not ready to die. My cousin said they would come if her doctor
agrees with it and she does not need to be near death. Well I asked her doctor
and they called Hospice.
To keep Hospice there has to be a decline in a patient every 3
months. Well it was slow but she did decline some. And hospice was so nice and
wanted to keep coming. They paid for everything--all her needs. All I had to do
was buy food. Thank goodness for them. It was great. They did take her off
blood pressure and Alzheimer’s meds but she was never in pain--they made sure
of that. She had Arthritis really bad so they kept her pain free. They came
twice to 3 times a week depending on her condition. She would have a bad day or
week and they would ask me if I wanted them to take her to hospice, but she would come out of it. This happen at
least 3 times in the almost 2 years they were coming. But then she got Aspiration Pneumonia.
Everything she ate or drank went in her lungs. She was choking on everything.
They gave me options to take her to Hospital and she might get better but she
would no longer be on Hospice or I could send her to Hospice and they would
make her comfortable and let her go peacefully. I gave in and we took her to
Hospice. It was awful. She was so sick. And I was so tired. I just needed sleep.
The first night at Hospice I sleep on sofa all night. First all night sleep I
had in years! The next day they said she coughed all night and I told them I
did not hear her cough once. Can you believe it! I slept though her coughing all night. Not
good.
When she went to Hospice she had no pressure sores. I worked so
hard to keep her turned and clean. I was so proud. That is the only thing I am
proud of. I was not nice enough to her, I felt—it was just so hard. I just
changed her diapers got her up, dressed, and fed her like a robot . We had a routine and it never
changed except on the days the Hospice Aid or Nurse would come.
Carol:
Looking back, what advice would you give someone taking care of his/her parent
with dementia?
Karen:
If you are going to care for a love one fulltime, have the
finances in order. Call an Elder Attorney. Ask for help. Get all the info you
can get. And if you can, try not to be the fulltime caregiver. Be the daughter or son and let someone else be
the caregiver. I believe if she had been in a nice assisted living home, I
would have loved to come visit her as a daughter--never a caregiver. It would have been wonderful to have someone
able to care for her at home while I worked. We could all be her kids and she
our mom. I missed all the years we could have had in the later years because I
was her caregiver and not her daughter. You can't get them back.
Carol:
Since your mother died, was it hard to get back into the work force?
Karen: I
used my recent experience. After she died I went to Lifestyles to work. It was
working with people who have disabilities. All ages. I just helped them live on
their own. I took them shopping and out on the town. I helped them with chores or just ran
errands. I did that for the first year, but I needed to get away from
caregiving all together. I am a Courier now. I am driving again. I love to do
that. I run in and out of clinics and banks picking up and dropping off stuff
to them. Love it.
Carol:
What a pleasure it has been to hear your story! You were an awesome daughter
and maybe didn’t give yourself enough credit for the difficult job you had.
Your advice is timely for others who read this blog. Thanks so much, Karen!
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| One of Karen's Favorites of Her Parents |
