My husband had younger-onset Alzheimer’s disease. The hardest thing for me during the duration of his illness was that I lost my companion. He was the person I made important decisions with. The person I went to movies with, ate dinner with, had interesting conversations with, traveled with, and shared delight with over the accomplishments of our children. He was the one I could complain to if I had a headache, stomach ache, or sore throat, without worrying about being called a hypochondriac or a baby. He was also the person who always cheered me on when I succeeded in achieving my goals.
When it came time to make the decision to move him to a memory care home, I especially missed having him help me decide on which room he’d live in, what type of furniture to buy, and the mattress he would sleep on. When it came time to bury him, it was agonizing for me to choose the plot of land where he would be laid to rest, and where I will be eventually interred.
During my many years of caregiving, I would often hide behind a mask of cheerfulness. It helped. I didn’t feel like a prisoner because I hired people to take my husband out to see a movie. Several of his friends kindly took him to lunch on a regular basis. It takes an effort to maintain friends and to stay socially involved, especially if you no longer work outside the home.
I promised myself that I wouldn’t let my husband’s disease ruin my life. I kept an active calendar filled with dance classes, lunches with friends, and even pursued a certificate in nutrition–all the while he was ill.
But it took planning and some might think I was a bit selfish. But when you look at the grand picture of caregiving, taking care of your personal needs is anything but being selfish. Studies show that 40 to 70 percent of family caregivers experience symptoms of clinical depression. One of the reasons, besides the daily stress, is isolation and loneliness.
Now for the lecture part: If you are a caregiver it is vital that you maintain a social network. Here are some ideas:
- Stay connected with friends and family either through Facebook or another social media outlet, or by telephone or email, etc.
- Make a lunch date with a friend at least once a week.
- Many places of worship offer support for caregivers and families, including social events.
- Go to a class—any kind of class: knitting, dance, weight training.
- Join a support group—The Alzheimer’s Association offers classes and workshops for caregivers and for the person with memory loss.
- Ask your friends and family for respite care. Have someone come over for a couple of hours a week so you can at least get out for a walk or go grocery shopping.
- Go to the movies with a friend. It’s a great way to escape into another world for a few hours.
- Call a best friend who is happy to talk; call someone who makes you laugh–laughter is truly the best medicine.
- Bring your loved one to a Memory Cafe/Alzheimer’s Cafe. The challenges of living with memory loss can sever social connection at a time when it is needed most. Throughout the US and Europe, this casual social meeting is for caregivers and their care partner (the person they are caring for). Memory Cafes offer a way to socialize, explore art, music, poetry and listen to discussions and presentations. A Dutch psychologist opened the firs Memory Cafe in Holland. today there are about 200 Memory Cafes in the U.S.
- Chat online with other caregivers. The Alzheimer’s Association offers chat rooms and so does the American Cancer Society. Check Elder Care Online for chat room and caregiver forum links. ElderCare Online’s Caregiver Support Network brings together online resources, groups and experts to create a virtual community dedicated to improving quality of life for you and your loved ones.
Really great article! That is probably one of the things that scare me the most – to progressively lose my partner through Alzheimer disease. It must really be a hard experience. You were strong and took care of yourself the best way possible and that’s really admirable!
Sending love to you
Thank you, Claudia. xo
Thanks so much, Claudia. Wishing you well.