Caring for a loved one with dementia can be exhausting and frustrating. Nancy’s House guests who have been taking care of parents or spouses with Alzheimer’s Disease (AD) or other dementias have been, without question, the most physically, emotionally, and financially exhausted.
One difficult element of dementia is its unpredictability. Good moments turn, in a heartbeat, into anger, possibly without seeming provocation.
Another problem is the “flipped clock” . Our loved one may not sleep at night. As a result, we may not sleep at night. That leads to many of the emotional and physical problems common to caregivers – poor memory, irritability, slower response times, increased mistakes. All of these, along with that unpredictability, create an unpleasant combination.
Another huge piece is losing the connection with that loved one. They look like the person you always loved, but they may not recognize you. Or, they may be totally in their own world now, and you have no way in.
Here are some steps you can take, for yourself and your loved one with dementia:
Creating or looking at art creates a real change. “Case studies and several small trials suggest that art therapy engages attention, provides pleasure, and improves neuropsychiatric symptoms, social behavior, and self-esteem.” according to an article by University of Pennsylvania researchers. No prior experience is needed, and you can do it together.
Find the old memory. Looking through old photos can help connect fragmented memories. Smell, a primal sense, can tap memories. Use vanilla, favorite perfume, rose water, etc. on cotton balls to trigger happier memories. One guest, whose mother loved baking, lit an apple pie scented candle and gave her mom a bowl of flour to stir. The physical memory of baking created a calm, happy activity. All of these maintain your connection with the person you love.
Keep expectations small and plan for extra support. The nature of dementia is that your loved one may become difficult, especially toward the end of the day (known as “sundowning”). Have a friend, family member, or paid caregiver with you who can help.
Stay connected with people who matter to you. It is easy for friendships to slip in this time, but now is when you need that support. Ask your friends to call or come have coffee. Regularly. Perhaps use some of that time for them to visit with your loved one while you pay bills or take a walk.
Practice forgiveness – for yourself as well as your loved one. Letting go can be a big relief.
Plan to get some sleep – somewhere else. Use home care, residential respite, or another family member to spend the night periodically so you can go to a hotel or friend’s house and get some solid sleep.
Meditate. Just 12 minutes a day makes a difference. Count your breaths.
Remember, you need to take care of yourself if you are going to be there for your loved one.