In those first weeks and months after a loved one has received an Alzheimer's disease (AD) diagnosis, caregivers often have many questions, fears, and concerns about upcoming changes to expect in their own lives as well as in the lives of their loved ones. Even for those caregivers who may not be surprised with an AD diagnosis, the official diagnosis is still a sobering wake-up call. In my situation, I had been observing signs of what I had suspected to be symptoms of early/young onset Alzheimer's in my wife for several years prior to her diagnosis, so her formal diagnosis in 2009 came as no surprise. However, confirmation of my suspicions did not make it any easier to receive the diagnosis that she had a terminal degenerative disease. How should I prepare for what was to come? What could I do to help Clare maintain a high quality of life for as long as possible?
I wanted Clare to be in a support group, thinking that she would benefit from weekly meetings with others facing similar challenges. However, it is not easy to find local caregiver support groups, especially for those with early onset AD. The Alzheimer's Association provided more than thirty different caregiver groups on Long Island at the time, but none were for early onset, none specifically for people with early stage AD, and none that met weekly. Most of their groups met only once a month and were for mixed groups of caregivers, not for people with AD.
I did find a support group for Clare at the Long Island Alzheimer's Foundation (LIAF). This group met every Tuesday afternoon and whereas Clare was the youngest and only one with early onset AD, everyone in that group was dealing with early to moderate stage AD. After an initial screening by the social worker who led this group, Clare was accepted into the group and prepared to attend their next meeting the following week.
I brought Clare to her LIAF meeting with a newspaper under my arm, expecting to sit in the lobby while she attended her first meeting. Clare, however, suggested that I join the spouse caregiver support group that was meeting in another room at the same time. Never a fan of group meetings and unaware of any personal need for a support group, I said that I was perfectly content to wait in the lobby and read the newspaper. But Clare pleaded with me to attend that spousal group meeting, promising that she wouldn't ask me to do so again if I didn't want to go back next week. To avoid an argument, I reluctantly said okay and at the designated time we both left for our meeting rooms.
My decision to listen to Clare and attend that spouse caregiver support group meeting turned out to be a lifesaver. I felt completely comfortable sharing "my story" with the other spouse caregivers and soon realized that, regardless of age or gender, everyone "got it" in this group. Our individual situations were all different, but we were all dealing with many of the same behaviors on a daily basis. It was very helpful to learn about strategies that others were using to handle those behaviors.
My take-away from that first meeting was that all of these spouse caregivers were swimming in the same lake that I now found myself in. We were paddling in different boats, and at different speeds, but we were all simply trying to stay afloat in Lake Alzheimer's.
In the coming weeks and months I absorbed a great deal of helpful advice as we shared and discussed new and worsening behaviors, helpful strategies to deal with our spouses, medications, doctors, and many other topics. Sometimes we laughed, sometimes we cried, but always we knew we could say whatever was on our minds in a totally non-judgmental environment. As some of our spouses declined more quickly, those whose spouses remained in earlier stages still listened attentively, knowing that we might have to deal with similar issues in the future. We also offered emotional support and suggestions. And over the course of months and years as those whose loved ones in early stages advanced to intermediate stages, we were able to share our collective wisdom with the "early stage newbies" who joined our group.
After Clare's diagnosis, I thought that she would benefit from joining a weekly support group. She did find socialization opportunities, but little else. She didn't seem to learn better coping skills from her fellow group members. It turned out that I, as her caregiver, was the one who really needed to be in a support group. I was the one who learned coping skills and how to be a better caregiver.
Doctors must become more aware of how much their patients' caregivers, if not their patients themselves, can benefit from being in support groups. Doctors must understand how important it is for their patients' caregivers to have a place where they can talk openly about their feelings, fears, and concerns while receiving emotional support along with helpful suggestions and advice from others "who get it." Caregivers should not have to "go it alone" when their loved ones continue to decline from an incurable disease.
Clare and I saw an internist, a neurologist, and two geriatric psychiatrists, yet none of them mentioned anything to either of us about joining a support group. Only one spouse in my support group had been referred to LIAF by a doctor; everyone else learned about LIAF's support groups through the internet or word of mouth. This is a practice that must change!
For caregivers currently not in support groups, I would strongly recommend that you find out if an appropriate group is meeting nearby and, if so, that you attend a few meetings to see if you can learn as much from your group as I have learned from mine. If that is not an option, consider joining an online support group.
My particular group forged such close bonds that many of us still continue to "meet" weekly ... only instead of meeting weekly as a formal group at LIAF as we did for three or four years, we now meet together each week for lunch in a nice restaurant. All of us now are either widowed or have spouses in advanced stages of AD, but we are still helping each other and providing emotional support.
If you would like me to respond to questions or comments about this article, please email me directly at acvann@optonline.net. All of my columns on The Huffington Post may be accessed at www.huffingtonpost.com/allan-s-vann. You can learn more about my journey with Alzheimer's and read my articles published in caregiver magazines, medical journals, and in major newspapers at www.allansvann.blogspot.com.
My next blog post will be in 2 weeks. Tentative title ... "Alzheimer's and Driving"