Young Onset Alzheimer's Disease: Love and Family
“Inspire, empower, engage.”
I was contemplating what I would write about this month and I struggled terribly with Maria Shriver's motto. As a caregiver for a loved one with Alzheimer’s Disease, I felt it quite difficult to inspire and empower no matter how hard I tried.
This time of year has always been difficult for me and as my husband’s health has declined, so has my often infectious positivity. The truth of the matter is, when you’re caring for a loved one (no matter what the illness), this time of year is always difficult.
With some help from my daughter and a few re-writes later, I hope I’ve been able to share my thoughts in a positive way and give some advice as I trudge ahead through this holiday season.
I will not sugarcoat or lie: being a caregiver around the holidays is anything but easy. This time of year has always been my most difficult for many reasons. Because my husband was so young at diagnosis (he was 36) and my children were so little (7 and 9), I learned the true meaning of Christmas early on. Christmas is not about gifts; it’s about love and family.
I will share with you a few personal hurdles, some memories, and some advice.
My husband’s health has declined each year, and each decline has brought new obstacles. The year after he was diagnosed, when he still had his thoughts about him, he suggested we get a pre-lit artificial tree on sale after Christmas. He thought ahead to know that with two little children, it would be hard for me to shop for and set up a real tree by myself. We got a great tree for a great price, but have used it maybe only three times. I never expected it to weigh a hundred pounds and come in so many heavy pieces – it was more difficult to get it down from the attic than it was to put up a real tree. While it was a wonderful idea at the time, it didn’t quite go as we planned.
Needless to say, we usually get a real tree every year.
Next comes Christmas shopping. During the first few years following my husband’s diagnosis, I was able to drive my husband and kids to the store. The kids would get a kick out of picking out my gifts (I happen to be unfortunate to have a birthday a few days before Christmas, so they would shop for that as well) and helping their dad pay for them. I had always done most of my shopping online, since I couldn’t really leave my husband with the kids for long periods. Yet, even at a young age, the kids noticed that they and my husband would have many presents, and I would only have the one or two they bought when I took them to the store. This didn’t matter to me, but they would feel bad for me. This allowed me the opportunity to discuss with them what Christmas is all about, and explain that it really is better to give than to receive.
Still, I struggle each and every year with “celebrating” Christmas, but then I remember how much Mike loves it and how the kids look forward to it. I often wonder, if it were just my husband and I, if I would even decorate. Caregiving is so time consuming in and of itself, so add to that all the stresses of Christmas and you have the potential for disaster. I am grateful that I have my FAITH and the knowledge that Christmas is my husband’s favorite holiday. I do my best to decorate, shop, and prepare with the time I have and allow myself the permission to accept we will never be Norman Rockwell perfect.
One Christmas in particular will be impossible for our family to ever forget. The kids and I had just gotten back from Mass. We were lucky to have an aide that day who was able to get my husband ready in the morning while we were out, and he had just gotten Mike dressed and in his chair when we got home. All of a sudden, Mike began breathing very heavily. I had never seen him like this –- it was as though he couldn’t get air. We called an ambulance and when he arrived at the hospital, the doctors had to lay him down to do a CAT scan. He was struggling just to breathe. I was crying for them to stop, but the test needed to be done to find out the problem. Result: Mike’s lung had collapsed. My daughter and I stayed with him until the procedure to re-inflate his lung was completed and he was asleep for the night. We got home close to 11 PM that night, and the kids opened their presents then.
When you experience Christmases like that, it’s hard not to be thankful for each and every one thereafter.
Two years later, in 2008, Mike was placed on hospice. We now celebrate each year by wondering if it will be our last Christmas together. It’s very difficult for me to be open to the joy of the season when my husband is so ill. Listening to friends and co-workers plans, even watching commercials becomes very emotional for me. As strong as I am, Christmas still seems to weaken me.
Some of you may know a caregiver who is struggling at this time of year. If you would like to be a support to them, here's some advice:
1. If there are young children in the home, ask if you can take them shopping for gifts. They may not have a way to get out otherwise.
2. Most caregivers can’t –- or won’t –- leave their loved ones alone. Ask if you can stop by for a quick hello, maybe bring some homemade cookies. This will make them feel less isolated and more “normal.”
3. If they would like to get to Mass or other religious celebrations, offer to stay with their loved one while they go out.
4. Ask if they need to go out shopping and offer to stay with their loved one.
5. Offer to help put up their tree, or help bring decorations down from the attic or up from the basement.
If I can end on any positive note, it would be this: Alzheimer’s Disease has forced my family to truly and completely realize how short life is. As difficult as the holidays are, we cherish each and every one of them and make the most of each one. As nice as gifts may be, they will NEVER take the place of family and the love we share with one another.
I wish you ALL a wonderful holiday (no matter what you may celebrate) and a New Year of dreams fulfilled.
Follow Karen Henley's journey...read her past blogs here.
Karen Henley is a legal assistant for a real estate attorney as well as a full time caregiver to her husband. She is an advocate for Alzheimer's disease research and awareness, especially for Young Onset Alzheimer's. She lives in Westbury NY with her husband and two children. She's the author of the blog, Follow You, Follow Me: A Young Family's Journey with Young-Onset Alzheimer's Disease.