The Longest Day 2018
Home | News | Events | Press | Contact  

About UseNewsletterMessage BoardsAction CenterAdvocateWalk to End Alzheimer’sShopDonate

Find your chapter:

search by state

Nancy's Story
Text Size controlsNormal font sizeMedium font sizeLarge font size


My husband was diagnosed with Alzheimer's disease at the age of 55. He had shown signs of the disease for at least a year prior to that. His sister finally convinced him to see a doctor even though there was no family history of the disease.

Once diagnosed, he went into a period of denial and refused to admit that this disease was going to "beat him." Taking the car keys eventually was very difficult because he really believed that he could drive. I used to have to hide them when I went to work. I had to keep my part-time job and could not stay home with him because that job provided our family's health insurance.

Our daughter lived and worked in another state, and our son was finishing up his college degree. I was determined not to let this interrupt their lives. I had to close down our dwindling business; it was impossible to keep going because my husband's many years of experience were what the business was founded on. There was no pension or retirement because he was self-employed.

There never were any notes to remind him of things because early on he lost the ability to read and write. He couldn't dial a phone, either. He also lost the ability to speak clearly, although I knew what he wanted to say. After being married for 26 years, I could read the frustration and anger on his face because he wanted to say something but just couldn't come up with the words.

He would wander at all times of the day and night, and the only way I could make sure he was safe was to follow him. Trying to redirect him usually didn't work. He was still very strong physically and very strong willed, and there was no way I could stop him. There were times when he would sleep for 48 hours straight, and there were times that he would be awake for 48 hours straight. I always slept with one eye open.

I had been working for a major hospital chain in the emergency room on third shift, hoping that he would sleep most of the night and not wander off or burn the house down. Eventually, I needed to change because nighttime and darkness seemed more dangerous than daytime. The employer was no help at all, and even though the entire department had been changed around, I was given two choices: full-time nights or part-time nights. The only way I could obtain a daytime job was to change departments, and finally that was what I did.

I also hired a wonderful young lady to come and stay with my husband while I went to work, although it cost me almost as much as I was making. I was literally working through all of this just to keep our health insurance.

Many people don't know that there is absolutely no help from county, state or federal programs for people under the age of 60. Thankfully, he qualified for Social Security disability without a fight because by that time, I had no fight left in me. After two years of waiting, the Alzheimer’s Association came through with $170 a month to help with the cost of his sitter.

Eventually that sitter left; she was afraid of him because he had become increasingly combative. I started to take him to a local nursing home for their day care, but he was asked to leave because of fear for the other residents. It was suggested that I have a geriatric psychiatrist see my husband to adjust medications for behavior, but that same hospital system that I work for refused to see him. That kind of care was only available to people over the age of 64. Once again, I felt that he was faced with age discrimination.

After living with this situation for almost five years I decided I couldn't do it anymore. Even with the help of my son, who had finished college, and an agency aid that was a big, strong man, I had to place him in a nursing home. A geriatric psychiatrist that I was paying out of pocket for (because she was not on our insurance plan) convinced me that this is what I needed to do.

There was only one nursing home that would take him. They had a behavioral unit. It was a 40-mile drive from home, but no one else wanted him. I was forced to admit him first to a geriatric psychiatric unit of another hospital (one that our insurance plan would not pay for) because age didn't matter to them. There, they would medicate him and have him adjust to being away from home. He never made it there, though; in their ER, I found out that his blood count was critically low. No wonder he had become so weak: His hemoglobin was 20, and his hematocrit was 6.8. The cause was terminal lung cancer.

While at the hospital before the diagnosis was determined, they also noticed a foreign object in his stomach on an X-ray. It turned out to be a magnet off the refrigerator at home that he had swallowed. No one will ever know when. Perhaps it was the same day that he drank the Pine-Sol that I had left out on the counter.

He spent 17 days in the hospital and then was discharged to the only nursing home that would accept him. After a week they threw him out. They didn't care where he went, they just threw him out.

He spent another five days at a hospital way across town that our insurance company arranged and finally agreed to pay for. After experimenting with various medications that didn't change anything, the doctor told me that there is no medication that would change his behavior. He was confused and was just naturally defending himself. So I brought him home with the help of hospice and the male aid that had worked for us that summer.

It was my last wish that he live long enough to make it home; by then that was all that mattered. He smiled and petted our dog in the driveway that beautiful day. After being away for a month, he realized where he was; he was home. My husband died nine days later.

As I write, this tears flow down my face, and my heart goes out to all the other loved ones of Alzheimer's victims. I want so much to help them, but I do not have any strength left.

As I look back, I feel that my husband's death was a blessing. He never would have wanted to live under those circumstances, and I thank God that he finally called him home.



Alzheimer's Association

Our vision: A world without Alzheimer's disease®.
Formed in 1980, the Alzheimer's Association is the leading voluntary health organization in Alzheimer's care, support and research.