Show #331 Airing Sunday, February 12, 2006
“Til death do us part.” That’s the commitment we make in our marriage vows. But what can a loving spouse do when Alzheimer’s has seemingly taken away our partner during life? Here to share her personal journey and offer advice is Kathy Doberstyn, resident services coordinator for Arden Courts of Parma.
Question: Kathy, I know that this is a topic that is close and personal to you. Can you take a minute to explain?
Answer: My husband Gary was diagnosed with familial early-onset Alzheimer’s disease when he was 44 years old. The early-onset disease progresses more quickly than traditional Alzheimer’s. After 18 months, he already could not communicate, speak, or express his needs. Our world came crashing down. I became a full-time caregiver, mom, was working, etc.
Question: You had mentioned to me earlier that Alzheimer’s is a very lonely disease. .What did you mean by that?
Answer: It’s a very lonely disease for both the diagnosed and their spouse. For the person with Alzheimer’s, they can’t process or understand what is happening to them, nor explain what they need. Therefore, they turn inward and become quiet and reclusive. They may sit in a chair all day and find nothing that they enjoy.
The spouse is also very lonely because much of the burden and the responsibility falls to them, and they are not getting the love and the support that they used to from their spouse who is sick. They can’t divide up the tasks they used to as couples, such as finances, yard work, etc. The spouse is becoming the caregiver—helping their husband or wife bathe or brush their teeth—yet not getting their own needs emotionally or physically met.
Question: Besides loneliness, what other feelings might one experience if a spouse has Alzheimer’s?
Answer: Depression is very common among spouses of those with Alzheimer’s. The spouse may start to feel resentful towards the diagnosed, and that’s often followed by feelings of guilt.
Question: How can a spouse navigate through these feelings?
Answer: What really needs to happen is that you have to let go of your expectations as a married couple and redefine your relationship. And I do want to give spouse’s hope, because I found that I was able to do that through my husband’s illness. This was my husband, this is what God gave us, and we were going to make the best of it.
For example, while my husband was in the nursing home, I was attending nursing school. After I did well on a test, I would rush in and tell him about it. I wanted a kiss and a smile, but he was unable to express that to me, and that would leave a hole in my heart . However, I decided that if I wanted a hug, I would hug him myself.
Another thing to remember is to treasure and cherish the little gifts—and there are some. By our 21st anniversary, my husband had already not spoken for years. As I was leaving him that day, I commented about it being “21 years.” He looked at me and said, very clearly, “Really?” That was my anniversary present, and is a moment I cherished.
Question: Where can spouse’s turn for help?
Answer: Very often, depression occurs because the spouse has isolated themselves. Reach out to friends. When my husband was at the nursing home, other spouses and I would go out to dinner together. This all helps fill a void.
Contact a support group, and ask for one geared towards spouses. The Alzheimer’s Association has them. We’ll tell you how to reach another one in a moment.
If your spouse has Alzheimer’s Disease, it’s easy to feel alone. But you don’t have to be by yourself. Arden Courts offers information support groups and will be putting on an informative seminar this week. Call the number up next to learn more or for a fact sheet. My thanks to Kathy Doberstyn.
