Tips for Facing Alzheimer’s Disease in Your Family
Today’s post is courtesy of Jennifer Buckley – a volunteer for the MA/NH Alzheimer’s Association.
In 2002 I lost my grandfather to Alzheimer’s Disease. He was a wonderful and loving “granddaddy” who had a thick southern accent and deeply tanned skin. My memories of summers spent in Florida playing in his backyard pool are filled with love and laughter. I particularly loved his homemade fish fry dinners served around his big kitchen table. I’ve never had a fish dinner better than granddad’s.
After the loss of granddad, I became an active volunteer with the MA/NH Chapter of the Alzheimer’s Association. They are an amazing national organization that offers education and support services and much needed guidance for families.
I got involved not only in his memory but because I also saw first hand the impact that this disease has on families. Alzheimer’s is difficult and sad. There’s just no way around it. As a mother of two young children in elementary school, I also know the incredible impact it has on the “sandwich generation”. Trying to be a good parent is already a tough job, but when you add in the time and emotional strain of caring for an elderly family member with Alzheimer’s, the stress can be immense. Over the years I have talked to many friends and families that struggle with the diagnosis and the journey that follows.
Here are a few tips I always share that will hopefully help in managing that journey and finding peace along the way.
5 Tips for Coping with Alzheimer’s in Your Family
1. Use the resources of the Alzheimer’s Association. I can’t stress this enough. They have an amazing amount of information and resources and professional referrals. If you are a primary caregiver for someone with Alzheimer’s, they can refer you to a local support group. It’s a great way to connect with those going through the same thing. Knowing what to expect is incredibly helpful, as is the opportunity to commiserate and get emotional support.
2. Make a family pact. I’ve seen so many situations where the stress of the situation breeds discord, especially among siblings of a parent who has Alzheimer’s. When possible, share responsibility, stick together to support each other, and make the best decisions you can. It’s a trying and emotional time. Anxiety can be at an all time high for everyone. If you work to stay connected, it will help a lot.
3. Seek help and don’t be afraid to take it! Caring for an Alzheimer’s patient is exhausting. Make adjustments to your own life (help with cooking, cleaning, child care, parent care) as much as can to get the support you need. You can’t do it all yourself. Just as is the case in parenting, you can burn out fast. Take help when it’s offered and make some time (even if it’s just quiet time or a night out or family day) to recharge as best you can.
4. Be clear with your kids. Kids have a wonderful talent for keying into energy around them. They know when something stressful is going on. Be clear and direct when explaining Alzheimer’s. Help them understand that the behaviors they are seeing in a family member that are odd or scary or even embarrassing are because of the disease, not the person. The Association has great videos for helping kids and teens understand the disease.
5. Set (and adjust) your expectations and stay positive. Again, just as with our kids, we can’t expect Alzheimer’s patients to understand and navigate the world as we do. Alzheimer’s is not something, unfortunately, that can be overcome. The personality changes that you experience in your loved one are about the disease, not their feelings towards you. That will be very hard. But try to be patient and keep your interactions as positive and reassuring as you can. They are living in a confusing and altered world. If you emote love and compassion, they will pick up on that energy – just like our children do.
On last suggestion – read Still Alice. This novel was written by best-selling author (and Ph.D in Neuroscience) Lisa Genova. The book is true to the disease and written from the perspective of Alice, a professor who is diagnosed with Alzheimer’s. The book is a great read – it also offers glimpses of connection and hope – and will definitely leave you with a better understanding of the disease.
During one of the last visits I had with my grandfather, we were sitting around a table at lunch. He was in the end stages of the disease at that point and he couldn’t walk on his own or speak. But on that day I watched him as he sat in his wheelchair and reached for the wallet I’d put down on the table in front of me. He began to play with the zipper on it and he flipped it over and over. I think he liked the smooth feel of it, and was smiling. When I reached over and started to play with the zipper too his eyes sparkled with happiness. I knew he knew I was there and I wanted to play too. It was a small moment but it was definitely a connection. The only one that he was really capable of. And I’m glad I didn’t miss it.
Editor’s Note: Caring for a loved one with Alzheimer’s disease can be challenging and emotional for families. Bright Horizons and BrightStar Care recently hosted a webinar “Caring for a Loved One with Alzheimer’s” to share strategies and tips to help you support your loved one and your family throughout the caregiving process.
Jennifer Buckley is a freelance writer in the Boston area and mother of two. For the past 13 years she has been a volunteer for the MA/NH Alzheimer’s Association. She has been involved in many events, the annual Walk to End Alzheimer’s.