In the caregiver support groups that we attend, how to care for a loved one is always a topic. Pat Snyder, author of Treasures in the Darkness, has opted for home care, with adult day care and full time assistance when her husband, John, is home. The daycare gives him some social exposure and Pat some alone time. The additional caregivers make it safe for Pat to keep John in a home, which incidentally they renovated to be very, very accessible.
About the full-time caregivers, she says, “Yes, they sit a lot. But my health is in jeopardy if I try to lift him or if I am up all night when Lewy appears. And with Lewy's isolation issue, it is actually nice to have company more here at the house. They are good people. So my bit of wisdom is this: The money that was to be there for me later is being used now to keep me in good enough health to have a chance for a life after Lewy. Also John is calmer, less stressed with fewer symptoms with one-on-one care, and I am able to rest and not be constantly traumatized by Lewy's demands.” You can read more about Pat and John’s journey here.
Sue, wanted to take care of her father at home but eventually opted for residential. “We made the decision together. During a Good Time, a time of more alertness, I told him they could offer him things I couldn’t—and it was true. Mainly, I was afraid for his safety and what would happen if he fell—again. I’m glad we made the move when we did—when it was “we” and not just me, making the decision. I think it really made a difference in his acceptance of his new home. He actually seems to like it there! He doesn’t always know their names but there is something about certain ones that he seems to relate to. Maybe it is the feelings they generate. Feelings don’t disappear like memory does and the staff there really are very caring people.
Andrea is doing home care but she is exploring her options. My husband is very mobile, she says, but he’s not very steady and he can’t remember anything. I have to tell him how to sit and stand and eat and, well, everything. And he has to be watched every minute cause he does stuff like pouring milk in the sugar or worse. And his clock is all wrong. He is up much of the night and wants to sleep for hours during the day. I’m getting really tired. Maybe I should consider residential.” The group suggests that if she isn’t ready to go the whole residential route yet, maybe daycare is the answer. The added stimulation of being around more people and activities might even help him regulate his clock so that he’d sleep better.
Joy says that’s what she is doing. She is still trying to care for her husband, Bill, at home alone but she now takes him to day care a few times a week. “It does help. I feel more rested now. She has also arranged for him to get his showers there. “It was getting awfully hard for me to do and so just the shower has been a wonderful help for me—and he doesn’t fight them the way he does me,” she adds. Joy is leaning towards residential care too—maybe in the next few months. She sees the visits to day care as paving the way for this move. Bill will already know the place and some of the people.
Every caregiver has to deal with these decisions. And every situation is different. What was yours like?
Read more caregiver stories in our books, the Award Winning A Caregiver’s Guide to Lewy Body Dementia and our just released Managing Cognitive Issues in Parkinson’s and Other Lewy Body Disorders. These books and Pat Snyder’s Treasures in the Darkness are all available on www.lbdtools.com.