Health Hero: Vivian and Bernard Pinkowitz

Even in the final stages of Alzheimer's disease, Bernard Pinkowitz lit up when he saw the woman who had been his sweetheart for nearly 70 years. After his passing, his wife, Vivian, reflects back on how his diagnosis of Alzheimer's changed their lives but not their love.

When this all started nine years ago, it seemed like it came on very suddenly.

My husband, Bernard Pinkowitz, whom we call Pinky, and I were living in a little house in Florida when he started showing signs of Alzheimer's disease. Originally, the doctors said it was depression. I kept insisting that it couldn't be depression, but for a year, that's what he was treated for. Of course, it got no better.

We finally realized it was Alzheimer's when we came to visit family in New Jersey. My son, Lonny, and his wife, Jackie, did not believe the doctor had diagnosed him correctly; so we set up an appointment with a wonderful neurologist who had treated Jackie's dad.

The neurologist gave Pinky the Mini Mental State Examination (MMSE), a test commonly used to diagnosis memory problems. This neurologist was the first doctor who suspected Pinky had dementia. He gave me the name of a neurologist to consult with down in Florida.

The experience taught me that you have to be proactive. You can't just take the word of one doctor. If that doctor's advice isn't helping, you can't hide your head in the sand and assume it'll get better, because it doesn't.

Returning to Florida

Once we returned home, the doctor took an MRI of Pinky's brain and did all types of tests. We went to the neurologist every month. We knew then that it was Alzheimer's.

When I learned of his diagnosis, I felt devastated, but I figured nobody was going to take his life from me. He was going to live the best life he could. And I was going to be right there to help.

In Florida, we had a routine. Every morning after breakfast, we would play cards. In the afternoon, we would take out books of pictures and go through them. In the evenings, my friends would join us, and we would play dominoes or other games to stimulate his mind.

But those first six years in Florida were hard. I felt like I was drowning. Even though my friends were wonderful, they could only offer so much support and help.

Moving Closer to Family

Eventually, we sold our home in Florida and moved closer to our family in New Jersey. We used the assets from the house to pay for assisted living and moved into a condo in a adult community called the Chelsea. But even then, we knew that Pinky would eventually need more support.

I was very fortunate because I could take Pinky to my daughter-in-law Jackie's neurologist after we had moved. He, in turn, told me about another doctor, who would be the internist. So it wasn't a case of moving somewhere new and trying to find someone.

At first, we both lived in the assisted-living condo, and Pinky went regularly to an adult daycare program. That worked for about a year, until he needed more assistance.

It was incredibly difficult to decide what to do next. I couldn't ever say I was unable to take care of him, even though I understood that I couldn't. It would come to a point where we'd both be in trouble. It was so hard. My heart told me one thing, and my brain was telling something else.

As a spouse, there's so much up and down emotion, even though you think you know what's going on and you think you're doing the right thing.

Finding an Alzheimer's Home

I knew Pinky needed more help than I could offer, and I was ripping myself to shreds over the next steps. The primary care doctor told me that he had met other couples like us, who had been together their whole lives. He said that our love now had to move in a new direction, toward what Pinky needed for good care.

We found a small Alzheimer's home that was much easier for Pinky. There were only 11 residents with nursing staff and aides around the clock. I would visit him all the time while continuing to live at the Chelsea.

It was hard when he was taken away, though. I felt like my life was being taken away. It felt like a constant struggle. One minute I'd say, "I can't do this anymore." Five minutes later, I'd say, "What are you talking about? If the roles were reversed, he'd be there with you every second." It's so hard on caregivers.

The Right Care, the Right Time, the Right Place

Pinky lived in the Alzheimer's home for 13 months, but the decline was continuous. Eventually he reached a tipping point where he had to be hospitalized with a severe systemic infection. We realized he could no longer live in that Alzheimer's home, and he was transferred to a beautiful skilled nursing facility.

Thankfully, I have long-term care insurance for both of us. When I took out the insurance, I was only 60 and my husband was 62; a lot of people said they thought I was insane, too young. But this was always something that I worried about. Our insurance only covered nursing homes, and we were adamant that he would go to a skilled nursing facility only if and when he needed that level of care.

During the three years we lived in New Jersey, we tried to apply the right care at the right time and right place for him. And we've done it all as a team. What's helped me through this is knowing that even if it's not what I want, it's what he needs.

I let my daughter-in-law Jackie lead the way because she'd gone through this process with her mother. She knew what to look for and what to anticipate. When you're coming into something like this, it's like going into a foreign land. Everything is strange, and I was scared.

Family Support

At first, some family members didn't want to believe Pinky had a problem. I think it was denial, which is normal, but they've accepted it in time.

It's important to keep the lines of communication open because the family is so dispersed. I thank God every day for my wonderful family. They have given me so much love and caring.

I'm in constant touch with his sisters in Philadelphia, his brother in Arizona , and our daughter in Hawaii. They're always calling and wishing they could do something. I tell them that even just calling and talking is a help.

We also have a lot of nieces and nephews, and you'd be surprised at the calls I get. They all love their uncle. He was their angel.

Understanding the Disease

Alzheimer's is a difficult disease to comprehend. It's even harder for the family to understand as the disease progresses. Caregivers carry the entire burden.

Doctors spend so much time telling you about the memory loss and how your loved one is not going to remember your name. They don't spend enough time helping families understand all the physical changes that are going to take place and all the physiological things that happen as the brain cells deteriorate. Memory is so unimportant at this stage. It's what happens to the person that is so devastating.

One thing that really sustains me is knowing that Pinky did not experiencing any physical pain. This is the one area where everyone else in the family carried the burden but he did not. And that's such a help.

Sweethearts

I had a wonderful husband whom I adore. We had a marvelous life together, and no one can take that away. I was 16 when I met Pinky, I married him at 18, and I consider myself so lucky, even with this diagnosis. I'm fortunate that I met him when we were so young, and the two of us knew we were meant for each other.

When I looked at Pinky my eyes saw him, but deep down inside, I saw him as he once was. And when I went to visit him, a part of him lit up.

I remember visiting him one day. I walked over to him, and he said, "Oh, my sweetheart," and grabbed my hand. So even though he didn't know my name, he knew me. He may not have known who I was, but he knew I was a part of his life.

Vivian Pinkowitz's Tips for Caregivers

Think ahead. Look into long-term care insurance before you need it. Think about planning financially for your own future as well as for your parents.
Don't pull away from your friends. They may not understand the disease or sickness, but your true friends will be there to help you. My friends helped keep me sane while we were living in Florida. You need to know that you have somebody you can talk to; even if they can't do anything for you, they can help you relieve your heart a little bit.
Don't be ashamed of the illness. Remember how wonderful your loved one was before the disease. They haven't changed; it's just the illness.
Read as much as you can. This will help you to realize you're not alone. I read whatever I can get my hands on pertaining to Alzheimer's. I read because I want to know as much as possible about the disease. I know that I can't do anything to change it, but it helps me understand.
Gather the old pictures of times you had together. Look at them. Remember the good things. It's helping me.