Long-Term Care but Still a Caregiver | Lewy Body Dementia Association LBDA

Long-Term Care but Still a Caregiver

by Ginnie Horst Burkholder

February’s days have blurred together into a collage of images, emotions, and new experiences. On Tuesday, January 26, I was on the walking path with a friend when my cell phone rang. It was a long-term care facility offering a bed for Nelson on Wednesday or Thursday. We had been in touch with them as our second-choice facility.

The next day, my sister Micki helped me label Nelson’s clothes, and on Thursday we moved him in with his new roommate, George. So many things had led up to making this seem like the right time that I felt very peaceful about the decision. When I talked with Nelson about it, he offered no resistance. It was hard to know how much he understood, but his lack of objection added to the sense of timeliness for me.

Now three weeks into the experience, I have to keep reminding myself of all the things that fell into place to make it happen and feel so right. I knew intellectually that the transition would be hard, but I didn’t know what that meant experientially. I am finding out.

Minding the gaps

My friend who has walked this road ahead of me told me that I wouldn’t stop being a caregiver when Nelson went into a nursing home. She was right. And I’m fortunate to have Micki’s help. Together we try to manage the quality of his life. That means seeing the gaps in his care and doing what we can to fill them. While I knew that he was not going to get one-on-one care, I wasn’t prepared for just how many gaps there would be.

Nelson, who loves ice cream, missed the ice cream social. What happened? Another day he was wearing his roommate’s clothes. Does it matter? He told me he wasn’t sure if this was his toothbrush. What to do about it? We’d asked that someone remind him to rest after lunch, but no one did. Now what? Multiple combs have disappeared and been replaced. What’s the solution? He struggles to feed himself. Will anyone step in to help? I walked into his shared bathroom one day to see him drinking water from a denture cup. He doesn’t wear dentures. We brought a familiar cup from home and marked his name on it with nail polish. Will that work? I walked in one day to see him sitting all alone in the lobby and looking very sad. He was feeling the losses related to this change, but he needed help to express it. What if I hadn’t come?

We need to keep communicating with staff as we try to assure adequate care. Meanwhile, Nelson and I are both dealing with feelings of loss and trying to adapt emotionally. It’s another phase of letting go in what Nancy Reagan called “the long goodbye.” I did my best, but now the time has come for full-time care, and my heart still says, “Why?” I wonder if he will forget all about me if I don’t come in often enough. Will his other caregivers replace me? Does he feel abandoned?

A perpetual state of letting go

Then, there are the memories. The snow that has fallen during three snowstorms has turned into wet, heavy, perfect-for-building-igloos snow. I’m reminded of the huge gap between what Nelson was and what he is now. The Nelson I once knew would be out there right now with me and some borrowed grandkids, building a snowman or making an igloo. I grieve again the loss of years of my own vitality and health while I focus on surviving caregiving. I wonder what I have to look forward to as I live in a perpetual state of letting go.

Nelson’s move to long-term care seems to have created longer lasting swings into lower function. Will managing his care change that, or do we assume that it is all due to disease progression? Social person that he is, when he has a bit of higher function he may be pushing himself beyond endurance because he enjoys the people who are always around. We’ve scheduled in more naps and that has helped.

There’s a lot of trial and error. Now we try to monitor his need for rest and encourage naps. We can watch for the infamous urinary tract infection that can throw him into lower function. We can keep a close eye on things and go back to what we did all along – our best. We just keep on with the caregiving, attempting to meet his needs, as well as our own, as best as we can. That’s what caregivers do.

© 2010 Ginnie Horst Burkholder

To e-mail Ginnie about this story, click here.