OK, so you’ve come to Caregivers Community and you ask to yourself….
“So…who is this person to talk to me about being a caregiver?”
Well, here’s my story: It’s a little long….feel free to read it in
sections using the links below
I am the youngest of three, and the
only girl. My parents were both born and raised in Europe. My mother,
Olia (“Maman” to us kids) is Russian, but was raised in France. My
father, Peter (“Papa”) was Hungarian, raised in what is now the Slovak
republic. They came to the U.S. in 1954. My brothers and I grew
up surrounded by foreign languages, and we all spoke French before we
spoke English. French still remains the “family” language. (My husband
refers to our family as the “United Nations!”) Maman was the librarian
at the French Trade Office in New York City. Papa was an Internist. He
was the old-time country doctor in the middle of New York City. Yes, he
even made house-calls!
Maman, had me when she was 47, which in
1964 pretty much freaked out the entire medical establishment! In fact,
the doctor did so many tests before confirming her pregnancy that Maman
was sure he was going to tell her she had some terminal illness! But
no…it was just me! Frankly, with two sons ages 8 and 13 at home, Maman
wasn’t thrilled to be back into diapers again…and cloth ones at that!
Mom ("Maman") in 1949
I was lucky though, Maman was always very “young-at-heart” and although
we did have the normal generational differences, on the whole we got
along well. We lived in a great apartment in New York City. (My parents
had moved in the day JFK got shot in 1963). Growing up there was a
blast. It definitely helped form me into the person I am today. You
learn to be pretty fearless when you start taking the subway alone as a
pre-teen…yeah, today that would probably be seen as child-neglect, but
it was pretty normal back then. The whole city was my playground! And
I’m so glad to have experienced that.
We were also lucky enough to have a small country house in upstate New
York where we all spent weekends and summers. It’s a beautiful spot,
with a gorgeous mountain view and it was always Maman’s dream to retire
That never happened.
By 1994 Maman was a vibrant,
active 78 year old empty-nester. She was always on the move. Never
bored. She had even audited Political Science classes at Columbia
University! She was neither overweight nor a smoker nor did she have
high blood pressure….
Just before midnight on November 17th 1994,
I got a call from
Papa. They were upstate:
“There’s a problem with Maman, come quickly. The ambulance just got
here. I’ll meet you at the hospital.”
Maman had suffered a massive hemorrhagic stroke.
Just as they were ready to make the permanent move upstate from the
To me that’s one of the great injustices of this whole situation. Maman
spent her whole life working and just as she was about to fulfill her
dream, it’s taken away from her.
Even before the stroke, 1994 had brought some significant changes to my
life as well. I had turned 30 in August. And, in September, I had quit
my steady job as a radio copywriter for a small northern New Jersey
radio station to strike out on my own as a freelancer. I felt as if I
was just starting a new phase in my life and I was really excited.
Suddenly, I found myself barreling up the New York Thruway in the
middle of the night with no one but the truckers to keep me company,
trying to see though the tears as I floored it toward Benedictine
Hospital in Kingston, NY.
I’ll never forget what I found. My mother on a stretcher in the
Emergency Room…writhing in pain…in restraints so that she didn’t fall
off…totally oblivious to the world around her. Yeah, it was bad. No one
gave her much of a chance. After looking at the CAT scan the
neurologist told us she had about a 30% chance of survival. He didn’t
She spent six-weeks at Benedictine. Then the social worker told me she
had to be transferred to a rehab facility. I was handed a list and told
to pick one!
This was where I first realized the importance of being an advocate for
my mother and of forming relationships with people who could help her.
I chose the Rusk Institute in New York City. It wasn’t going to be easy
to get her in, but I wanted her there for two reasons: it was in the
City which would mean that I could be there everyday, and they had a
“Horticulture Therapy” program which I knew Maman would love. She’s a
I managed to strike up a relationship with the Admitting Nurse and we
found out that we had several things in common. Her father was a doctor
– so was mine. AND she had grown up in the Kingston area and was
familiar with Benedictine Hospital. In Rusk’s view, Maman was
“borderline.” She was older and not given a great chance of recovery.
But because of the relationship we had developed, the admitting nurse
accepted her. YAY!
December 31st, 1994,
Maman was transferred from Benedictine to Rusk Happy New Year!
She spent six weeks at Rusk and made more progress than anyone
expected. I was there everyday. I was involved in her physical,
occupational and her speech therapy.
I left her to own devices at the horticulture therapy! Plants and
I don’t get along!
Then it was time to go home….great, now what?
I had to learn so many new skills, I felt like I was on the fast-track
to nursing school!
- Wheelchair to bed…and back
- Wheelchair to commode…and back
- Wheelchair to bathtub chair….and back
- Wheelchair into car…and out again
- Dispensing medications
- Wound care
- Dressing…I learned it really is totally different
dressing yourself and dressing someone who’s in a wheelchair and unable
to move the entire right side of their body.
But I learned. And Maman learned. It wasn’t always easy, but we got a
I took over my parents’ finances, since Maman was the one who always
handled them and Papa had no clue! I took over the day to day
interaction with the Doctors and therapists.
Slowly Maman was recovering.
Then…within a year of Maman’s stroke,
Papa started showing signs of Alzheimer’s. He was 76.
Dad ("Papa") in 1957
out the phone!
It was official – I was now the caregiver to both my parents.
At first the signs were hard to read. We couldn’t tell whether it was
“just” depression or something even worse. Luckily, one of my older
brothers is a Psychiatrist, board certified in Geriatric Psychiatry, so
I was able to pick his brain. But we couldn’t tell for sure. We started
with medications. None helped. “Talk Therapy” was not helpful either as
Papa had a hard time expressing his emotions.
In December of 1995, he had taken such a turn for the worse that I had
to place him in the hospital. Yeah, I’m being euphemistic….
At 31, I
had to admit my 76 year old father to a locked psychiatric unit….
This was the second new-year in a row that one of my parents was in the
At this point serious
decisions had to be made. The first of which was…where were my parents
going to live?
The New York City neighborhood we lived in was becoming “chic.” Prices
were going up dramatically as yuppies moved in. Although my parents had
been wise enough (and had been able to borrow enough!) to buy their
apartment, the monthly charges were becoming too expensive. It was time
to sell the home that I grew up in.
30+ years of “stuff” had to be gone through….Papa was a pack-rat! I
interviewed seven real estate brokers and finally found one who
understood my situation and neither low-balled nor over-valued the
apartment. Our apartment went on the market in February 1996. With the
help of friends I was able to clear out what I could. I put the rest in
storage. In April 1996 I moved my parents to our house upstate. Maman
was thrilled!!! In May 1996, the apartment was sold.
As I said before, the town our – now primary – home was in was small.
The nearest grocery store was 15 minute drive away. A world away for
two elderly people without a car. But we managed to make it all work.
I found a wonderful woman to take care of Maman during the weekdays,
and even found a male aide to come in and take Papa out a few times a
week. For the first time in 18-months I was able to at least
partially go back to my life.
I had been offered a full-time job that I needed to take since I had
not worked in over a year and I had no savings left. My boyfriend Brian
had asked me to marry him and we were – amid all this – planning our
small wedding. Yes, he knew what he was getting into, and I thank God
for him everyday.
During the week I was home in our one-bedroom condo with Brian and our
two cats. On weekends I drove the two hours up to my parents’ house. I
did the shopping, laundry, made and froze microwave meals, wrote up
menus, paid the bills… Basically, tried to make sure everything was
running as smoothly as possible.
Everything seemed to be going OK.
Brian and I got married on October
On October 26th, Papa became non-responsive and I had to re-admit him
to the hospital. The same hospital Maman had been admitted to after her
So, my father was in the hospital again and there was no way that I
could leave Maman at the house alone.
a week after our wedding, my husband moved back in with his parents,
who luckily lived only a mile from our condo – and I moved my mother
into our condo. She got the bed, I got the couch!
I was working full time and now had the added daily responsibility of
my mother again, as well as the long-distance responsibility of my
I needed help.
I found it in the form of a Medical
Day Care Center now run by Christian Health Care
and a Home Health
I was very lucky that new Adult Day Care Center had just opened in
Wayne, the next town over from us. It’s a God-send – I realize that now
– but at first it was really tough for me. The first time I went and
dropped off Maman at the Sterling Center, I sat in the parking lot for
a half-hour and cried. I felt as if I had abandoned Maman. I felt
guilty and it took all I had not to rush in and take her home. But I
didn’t. And it has turned out to be a wonderful experience for her.
She’s safe there, and I get a break. The center has since changed
hands, but the staff is still wonderful and Maman has made many friends.
Papa finally got out of the hospital in December. He moved in with my
in-laws and my husband, while I was still with Maman at the condo. In
January of 1997 Maman and I moved in to my in-laws’ since they had gone
to Florida. Papa joined Maman at the Center during the day so that I
I also hired a home health aide to take over some of Maman’s the
day-to-day care. Tasks such as giving her a bath and picking both her
and Papa up at the Center in the afternoon and staying with them till I
got home. Her name is Pat, and she has been with us since 1997. I
couldn’t be as effective a caregiver without her.
Now it was time to find a house the four
of us could move into permanently. After looking at over 50 houses we
finally found a house that met all our needs…YAY!
Maman, Papa, Brian and I moved in to our new home in May of 1997. Just
about a year to the day that I moved my parents out of New York City.
In the following three years, Papa was hospitalized two more times.
Maman had another mini-stroke, which pretty much stopped any progress
she had made in terms of a physical recovery.
Then….One day in November of
2001, I came home to a melted ceramic teapot.
Papa had been getting progressively worse. Getting more and more
forgetful and unable to handle basic instructions. I didn’t feel safe
leaving him alone with Maman anymore. Now, he had forgotten that he had
put the teapot on to boil and it had melted to the stove. He was in the
next room and had never noticed anything. Luckily it didn’t set the
house on fire, but now dangerous situations were creeping in to the mix.
I knew what I had to do….but I didn’t want to do it.
On November 19th, 2001 I placed Papa in an Alzheimer’s Assisted Living
Courts at Wayne
It was the hardest decision I have ever had to make.
Again, I was lucky that Arden Courts had just recently opened and we
were able to place him there very quickly. The staff was wonderful, and
since it was only ten minutes away from our house, Pat took Maman to
see him every day.
In the beginning of 2003, Papa stopped eating, and as he got
weaker, he fell out of bed and was rushed to the emergency room. Once
again, after a few days, I was given a list of rehab facilities and
told to pick one.
I wasn’t as lucky with the choice that I made this time. It was a
hell-hole. I won’t give the name here but email
if you really want the gory
I knew that we were nearing the end. But I didn’t want him to die in
those horrid conditions. I finally got him moved to a wonderful
facility in Wanaque where he died peacefully on January 30th, 2003
After that, life went on.
After nine years with the same company, I got laid-off in May of 2005.
I had always wanted to go out on my own, so I thought “if not now,
So I started this website.
However I soon realized that LIVING the caregiving journey and WORKING
the caregiving journey was a recipe for major depression.
I needed a creative outlet and so I went back to my love of voiceover
It has been awesome! Loving my "work" while being a caregiver kept me
So....Maman, Brian and I continued on the path we were on, with
me as a voiceover artist and being a caregiver advocate
For the most part, Maman & I got along fine, but at
times the stress got to both of us. This is not how she envisioned the
last years of her life, and it’s certainly not how I envisioned my
first years of marriage! But we took it one day at a time, and we tried
to laugh as much as we could.
In 2008 Maman took a turn for the worse. It was time for Hospice to be
called in. What an amazing group of people.
I can truly say that they are angels on earth.
But...just as when she had her stroke....Maman was not ready to give
up! She broke all records because she ended up being on Hospice for TWO
June 24th is Maman's name day. In the Russian Orthodox tradition, this
day is more important than your birthday. As that day approached in
2010, I had a feeling she was waiting for that day to come.
I was right.
So, after over 15 years in that wheelchair, Maman was released.
People ask me whether I cried.
I had done my share of crying before her passing.
Now I know she's with Papa and her many friends hosting the best dinner
parties Heaven has ever seen!
I love her and miss her...as she was...but I know she's fine now.
So here I am.
I’m a former family caregiver.
Starting the next phase of my life.
What's interesting is that many of my friends are now just starting on
the caregiving path and have come to me for advice.
All I can do is listen and speak to my experience and hope it helps.
I know that as a caregiver I needed more fun in my life, and I know
other caregivers do too, so I have kept this website going.
It has been quite a ride, and I'm ready to help in any way I can.
Thanks for stopping by, and feel free to keep in touch!
hamming it up
on the ski slopes!