Water is on my mind. Not the surge of spring rains that make a swamp of my lawn. But the streams and lakes which mirror the flood of emotions set loose by dementia. The storms of this disease feel as vast and deep as the waters of Noah’s flood.
If each caregiver built an ark and invited pairs of friends in, two by two, their boat might still feel empty. People — even many we love — treat the disease like today’s version of leprosy. No one’s getting in that ark unless they’re forced. They prefer to swim alone.
My plan is to make a nice raft. They’re easy to build, and the sun can shine down on each delusion and fit. The raft will be made of all the laughter I’ve shared with my mom: buoyant, silly times when she used the wrong word and somehow spoke better truth. Those moments would be lined up vertically and woven through with dark days which tested our patience and made us strong. The posts of the raft will be lashed with love, hugs looped in and out around each edge. Nothing could hold us more tightly together. What is love if not a tie that binds?
Pontoons go below, to give us hope and keep our heads above water as waves of madness hit. We’ll float and paddle ‘til we’re shoved off to stranger currents. I’ll need a rope to haul myself back when Mom finally gets pulled to the other shore. Charon will throw his hood back and call her to his boat.
I can’t go with her yet. The raft is where I’ll stay. But alone, the waves of life will never feel the same. These treacherous tides have taught me far too much. And that love between the seams is something I won’t travel without.
This special spring weekend marks the time when many families will be celebrating Easter and Passover. It’s a time when traditions and memories unite people with a shared history. But for those with dementia it can also be a time of difficulty due to changes in routine and feelings of agitation.
It’s not easy to merge those segments of the family who love taking this break to do something out of the ordinary — and those we need extra structure. Some of us enjoy hauling out the old recipes and spending hours preparing foods we enjoyed during childhood. But getting tied up in the kitchen might mean taking a lot of time away from loved ones who are used to getting our full attention. It’s not easy to involve them in holiday preparations but figuring out how to do it can help them — and might improve the quality of family gatherings.
My mother’s Adult Day program sent our family a list of recommendations that help minimize holiday agitation for dementia patients. Here are a few suggestions that may help your family, too:
- Prepare your loved one for visitors. Sometimes you have to say it a hundred times, but just making sure they know there will be different people around can help to minimize their confusion.
- If possible, show them pictures before people arrive or ask people to wear name tags. Some people may think it’s a little strange, but I did it when some of my mom’s old friends came to visit her and it made things a bit easier.
- Keep one quiet area in the house where the person with memory loss can retreat if things get too hectic.
- Reminisce about past holidays. Sometimes these conversations trigger memories or pleasant feelings that can calm them and bring them a greater sense of joy.
- Recognize that its common for caregivers to experience feelings of anger, frustration and grief around holiday times. Be prepared for some extra stress and plan some downtime into the end of the day so you can unwind.
Although my mother is very impaired, I know many people who lost a parent before they had the chance to really know them. I feel fortunate to have my mom with me and I try to squeeze all the joy I can from our holiday get togethers. There are no guarantees in life, so it seems wise to choose happiness on those occasions when it’s offered.