“I would have only considered residential placement for Bill after he was so far gone that it wouldn’t matter where he was. It didn’t come to that and I’m glad. Bill had a bad heart and he died when his pacemaker quit working. Now I’m learning that perhaps entry into a long term care facility is better sooner than later. That if a person has enough social skills left to interact with others in their new home, they will be happier in the long run. I would never have considered that. I always thought that if residential placement had to happen, the later the better. That it was better to keep him at home as long as I possibly could."
This very common view does not take into account the fact that emotions last much longer than thinking and memory. It takes a certain amount of social skill to adapt to a new home and feel emotionally connected with it. Wait too long, and it just won’t happen. With LBD, there will always be periods of better awareness and functioning. During those times, a person who entered long term care with few remaining social skills is likely to feel very lost, scared and lonely during those times of awareness.
When you first place your loved one into LTC, your job is to help him adapt. Left alone, he’ll likely stay in his room. Even if his social skills are still present, they are seldom up to taking the initiative. That’s your job. As you go out and visit, join in the activities and such, he will follow. As he begins to feel more comfortable, he will be able to participate more.
You may want to stay with him most of the time but you need to have time away during the day. He needs this too. It will be difficult at first, but these hour or two absences are the way he learns that you aren’t deserting him—that you will return. LBD erodes the ability to learn; if you wait too long, he will continue to feel deserted every time you leave. It takes most people about six repetitions to learn a new phone number—or a new task. Expect your loved one to take twice that long—or more.
Your loved one picks up on your emotions and so the better you can feel about the move, the easier it will be for him to adapt. Choose the best LTC you can, but a less attractive one close to home is better than an excellent one too far away. You need to be able to easily divide your time between home and the LTC. Also, this will be closer to your other activities, such as church. You will be able to slip away for a quick nap at home, or errands or lunch with friends and return, revived.
You are your loved one’s advocate and the expert on what he likes and doesn’t like. It is a proven fact that people who have family in regular attendance get better care than those who don’t. Working with staff to make sure your loved one’s needs are met is a skill in itself. While the staff may be generally caring and concerned about their patients, your loved one is one of many for them. Your job is to make sure he doesn’t get lost in the cracks of bureaucracy without alienating the staff.
You continue to be your loved one’s emotional support. One of the reasons caregivers wait to move their loved one to LTC is that they feel they will lose some of the closeness they have at home. In our just published book, Managing Cognitive Issues in Parkinson’s and Other Lewy Body Disorders, Nancy, a surviving LBD spouse, explains how it worked just the opposite for her:
I wish I’d placed Del in LTC sooner. I was still with him every day, but I went home in the evening and actually slept well at night and so I was more rested—and patient. With the staff doing all the heavy lifting and hard work, my role became one of wife and companion again. We both loved the change.
If Nancy had waited much longer, Del’s social skills might have declined so that he would not have been able to adjust and enjoy the change.
Read A Caregiver's Guide to Lewy Body Dementia, available at LBDtools.com, for more suggestions about caregiving.