Alzheimer's blog

An Alzheimer's caregiver shares her family's story

By Angela Lunde September 18, 2013

At some point, many caregivers speak of their lives entering a "new normal." I believe what they're referring to is entering a time when normal refers to uncertainty, unpredictably and transitions — lots of them.

Transitions are developments triggered by change — a change that must then be incorporated into one's life. For caregivers, this transition might be the addition of a new responsibility, loss of personal time and independence, or a change in a relationship that once offered security.

Carol is a beautiful woman I know. She's creative, intelligent and ambitious. She's a passionate advocate for enhancing the lives of Minnesota families impacted by Alzheimer's. During a recent conversation, Carol shared with me that the most difficult thing about being a caregiver to her husband with young-onset Alzheimer's is all of the transitions you go through.

"Even though you can be mentally prepared and realize that the change is coming, you're never emotionally prepared when it happens. Every time a big transition occurs I cry, mourn the loss, and then roll up my sleeves and figure out what changes I need to make for the new normal," Carol said.

She described how some transitions are predictable, while others are unforeseen and likely to go unnoticed by those not directly walking this journey. What follows are some of the transitions Carol experienced. If you're a caregiver, I suspect a couple of these will resonate deeply with you.

The changes before the diagnosis
It's not very often that we think of a momentous transition happening before a diagnosis of Alzheimer's is made. Yet, when dementia symptoms have entered the lives and homes of a family, significant change are already taking place. And in fact, not knowing may be one of the most stressful and painful times.

Carol said, "Dealing with Alan's anxiety and personality changes was a very difficult time, and made even more challenging because we didn't understand what was going on. Alan became very verbally abusive, which was totally out of character for him. Our immediate family thought it was stress caused by working in a family business. My daughter feared for my safety and even suggested I think about divorce."

The secret
After a diagnosis is made, families will deal with the news in their own way. Some may meet the diagnosis with disbelief, some with fear or overwhelming sadness. For others, there may be a sense of relief in uncovering the demon that has gone unnamed for some time. In some families, such as Carol's, the new diagnosis is a secret within the immediate family.

"Early on," said Carol, "Alan's diagnosis was kept secret. This was a really tough time for me as a caregiver because I couldn't get the necessary support I needed."

The reveal
Over time, most families will begin to share the diagnosis with others and disclose what's been going on. Often, those that are told have been suspicious and are not surprised by the news.

Carol said, "Once the cat was out of the bag it was much easier for me. However, it became harder for Alan because he couldn't hide his secret any longer. He was terrified of the "A" word. He hated when people asked him how he was doing. But he also resented people who ignored him completely."

The demise of the career
Some people receive a diagnosis of Alzheimer's years after they have retired, but for others, symptoms due to dementia may be the catalyst for premature job and career loss. This loss profoundly affects not only the individual living with dementia, but the entire family.

"We were bought out of the family business," Carol said. "I couldn't convince Alan that he wasn't fired. It was an incredibly stressful transition for both of us. I had to meet with lawyers, accountants and financial advisors to work on the terms of the buyout and the worth of the company. At the same time, I had to work with insurance companies on disability and long-term care policies. We were lucky to have these, but it took me over a year to coordinate."

The not so good wonderful times
Despite Alzheimer's and all its implications, "Ordinary life still goes on," said Carol. "My husband has a devastating disease and my son was getting married. I helped plan an out of town wedding, and although wonderful, it definitely added to the stress and seemed overwhelming.

"As caregivers, we're so focused on the person with the disease, that anything added to our plate (even the good stuff) can feel like a burden and be thoroughly exhausting."

The full-time role
The amount of time spent in caregiving tasks slowly creeps up. Spouses will sometimes share that as time goes by the scales tip and they feel less like a partner in a marriage and more like a parent, a nurse, a director — a full time caregiver.

"I had some companion help for Alan, but I was also still able to leave him for short periods of time. One evening I ran out to do an errand and left Alan home alone. When I returned home Alan was frantic because he couldn't find me. He was afraid to go to a neighbor's house and he didn't remember how to use the phone to call me. One of the hardest transitions comes when you realize that your caregiving role has become 24-7."

The heart-wrenching move
Changes that occur over the course of Alzheimer's make it almost certain that additional care, including residential care, will be needed. This transition is often the most heart wrenching for families.

"Thinking about Alan living somewhere else was a terrible and difficult decision for me. I had his name on a list at the home I had chosen. When I got the call that there was a room available I cried for hours. I had already declined the opening twice before when the call came. But this time, I knew in my head it was time ... and yet, I was totally unprepared emotionally."

To be continued.

Sep. 18, 2013