Tips for caregivers, families of people with dementia
Dear Cari: As my husband’s caregiver, I have days when I wake up and don’t want to move. I just want to cry. He’s gone mentally, but he’s still here physically.
A: Give yourself the freedom to grieve. You may have lost your best friend, partner, supporter and helper. Your loved one may be causing you problems new to you. You are saddled with all the decision-making, which can easily cause anxiety. Of course this is depressing!
Seek help. Medical providers have counseling and therapy for folks like us. Take advantage of the programs and websites through the Alzheimer’s Association and other nonprofit agencies.
I’ll share what I’m no longer embarrassed to admit. I give myself a “pity party.” I hide myself away from anyone and grab a box of tissues and cry. I feel sorry for myself: for being stuck as a caretaker, for being lost as to what to do, for gradually losing my husband and for staring down the bleak unknown future. After I let it all out, and my tears have subsided, I take a deep breath and make a cup of tea and feel much better.
Dear Cari: My wife has been diagnosed with macular degeneration in her eyes. Is this caused by her dementia? I don’t think she sees well at all, but she pretends it’s nothing. Tell me what this is.
A: I have read that macular degeneration is the leading cause of vision loss for those over 50. Nothing can presently be done to stop this serious ailment, but your ophthalmologist may suggest vitamin and mineral supplements to help.
My husband also has this disease. His macular — the very back of the eye’s retina — has begun to thin, and tiny yellow deposits cause his vision to become blurry and dark in the center of sight.
A friend of mine was driving across the bridge and noticed the light poles were not vertical but appeared to bend inward toward the road. He knew this warping was a sign of the disease and got his vision checked immediately. He’s now undergoing treatment.
Some devices may be helpful to your wife, including lighted reader screens. It’s encouraging that many studies of this disease are currently underway. Trust your ophthalmologist for a full explanation of her diagnosis and help that is available.
Dear Cari: I’m exhausted spending so much energy trying to come up with activities for my sister with dementia. Outside caregivers cost a lot, so I’m all she has to keep her busy.
A: There are so many possibilities, which you may have already tried. Here are a few starters, and readers may have more to suggest.
Besides the obvious activity of puzzles, have you tried simple card games? The card game War is a favorite; it’s easy and good for recognition. If she is still capable of counting, try blackjack — with or without pennies or poker chips.
Look into her past childhood games for favorites. Checkers is an easy classic.
If she’s physically able and the weather allows, look for bocce ball courts in your area. Rolling a ball is an easy, age-old game.
Does she have the ability to help you cook? She may enjoy feeling useful if she can mix, chop, scrub or peel alongside you.
If her vision is not impaired, get a book featuring two photos where you have to spot the changes from one photo to another. These books feature every topic from old-time scenes to animals to antique cars. If you have any family photo albums, that’s another great way to spend happy hours.
Depending on where you live, there may be drop-in day care centers at reasonable rates. They organize activities; your sister may make new friends; and you take a break. More suggestions are at alz.org/help-support/caregiving/caregiver-health/caregiver-stress.
Dear Cari: Grandpa, my 92-year-old father-in-law with dementia, wanders. He is very confused and thinks his mother needs him. She died when he was little. Grandpa sneaks out and stands on the street with his straw hat on and his thumb out. He often gets lost in the neighborhood looking for his old house. Besides locking him in, what can I do?
A: First, get Grandpa a bracelet ID or one that can be put into his shoe. An ID for his wallet or pocket is good but may get misplaced. Alert your local police that he does wander. They are usually ready to help. Can you drape your exterior door, place a table in front of it or paint it to camouflage it? The idea is to make him unable to find it.
Since Grandpa is frustrated that he cannot get to where he is going, play into his confusion by offering him a map. Saying something like, “Show this map to the people who give you a ride to take you where you want to go.” He may think this is a fine idea, even if he can’t read the map! Attach a big label to the map, noting “Alzheimer’s patient. Please do not transport more than three blocks. Call this number and his family will come get him.” When Grandpa shows this map to any driver who stops to give him a ride, they will realize the situation. When you get the call to go fetch him, open the door to the back seat for him and make sure the child locks are on.
Cari Lynn Pace cares for her husband, who was diagnosed with dementia. Helpful ideas like these are commonly discussed in caregiver support groups. Medical professionals must be consulted for any medical issues. Contact Pace at PaceReports100@gmail.com.