The challenge of living with Alzheimer’s
More than 5 million Americans live with Alzheimer’s disease, and that means there are challenges among many families this holiday season. Whether it’s the person with this most common dementia or his or her loved ones, holidays may look nothing like they once did.
While this wondrous time of year can be difficult when Alzheimer’s is in the picture, it’s possible to enjoy the season. It is, however, different.
Far-flung family members may not be aware of just where their loved one is now in terms of the disease’s progression. If you are the primary caregiver, you need to start by making visitors aware of changes before any holiday gathering. Advise them not to be offended about such things as when an Alzheimer’s patient doesn’t remember them.
Trust me, I was taken aback the first time my beloved wife, Elaine, mistook me for her father (we’ve been married 55 years), or when she didn’t remember or recognize one of our four children. It’s been nearly 10 years since her diagnosis, and every day is a surprise.
When interacting, keep your eyes open to what makes your loved one happy, join his or her world rather than holding firm to traditions and expectations. It helps to recognize the calming effect of simplicity, especially at such a hustle-and-bustle time of year.
Music often is one of those simple beauties. It may trigger happy memories and leads to smiles in situations that may otherwise be stressful. During the holidays, have a family sing-along or listen to Christmas carols. Likewise, if your loved one enjoys flowers, bring some to your family gathering or go on a group excursion to a horticultural center — or even the floral department of a craft store. You’d be surprised at how long a single flower or blooming plant may hold the attention of someone with Alzheimer’s.
If there are young children in your family, encourage them to not be afraid of your loved one. Coloring together is a great activity for everyone to do. Think about what a special keepsake it would be years from now if a grandchild had a picture that they colored with grandma or grandpa.
The Alzheimer’s Association, which I credit for my physical and emotional health, reminds us that holiday gifts are appreciated but are different from what you may have chosen in the past. Consider photo albums with loved ones, audio recordings of favorite music and videos.
Equally as important is to remember caregivers during the hurried holidays. In 2015, 15.9 million family and friends provided 18.1 billion hours of unpaid care for those with Alzheimer’s and other dementias. That care, according to the Alzheimer’s Association, has an economic value of $221.3 billion.
Time and attention are two of the most treasured things you may give a caregiver. Create a hand-made “gift card” that promises to spend time with the person with dementia so that the caregiver can get some respite time. The gift may also be “good for one trip to the grocery store” simply to help lighten the burden of everyday chores. You may offer to take the caregiver for coffee or a walk so he or she may openly share the complicated emotions of caring for someone with Alzheimer’s. Caregivers want to be validated, to have someone else know the challenge they face.
It helps tremendously when you realize that the more you understand Alzheimer’s, the more you can look for and find moments of joy. Accept that there may be times when things get tense, but know that when you argue with someone who has dementia, you are really arguing with the disease — and that’s an argument you unfortunately cannot win. It helps to be as positive as you can muster for yourself, your family and your friend or loved one with Alzheimer’s. You’ll appreciate the peace it brings to your home during the holidays and every day.