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!


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 there. 

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….

But…

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 City.

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 know Maman!

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!

OK….!?

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 plant fanatic!

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!

• Transferring:
• Wheelchair to bed…and back
• Wheelchair to commode…and back
• Wheelchair to bathtub chair….and back
• Wheelchair into car…and out again
• Bathing
• 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 routine going.

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
Check 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….

Happy New Year…again.
This was the second new-year in a row that one of my parents was in the hospital.

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 19th, 1996.


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 stroke.

OK…..

So, my father was in the hospital again and there was no way that I could leave Maman at the house alone.

So…

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 father.

I needed help.

I found it in the form of a Medical Adult Day Care Center now run by Christian Health Care and a Home Health Aide

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 could work.

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 Facility: Arden 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 me if you really want the gory details.

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, when?”



Maman





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 sane.

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 YEARS!

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 didn't.
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.

UPDATE:
It has been a while since I have updated this site. A lot has changed since 2010. Including, as often happens, a divorce. But it's all OK.

Life goes on, and I have kept this site up as it still seems to offer value.

I plan on giving it a complete overhaul in 2019, so please be patient, as it has always been a labor of love.

I stepped away from anything "caregiver" related for the past 8 years as I built my voiceover career. I'm ready to slowly be of service - as I have been in private to may friends - in a more public manner.

Thanks for stopping by, and feel free to keep in touch!

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