You’ve made the decision to place your loved one in residential care. You know it’s time. You did the research and you know you’ve chosen the best place you can afford. You made the move, painful as it was, and now, your loved one and you have different homes. For many of you this will be the first time in decades that this is so. Others, such as adult children, may have committed to caring for a loved one to the end. For most caregivers, no matter what the relationship, the transition from full care to sharing the load with residential staff can be traumatic.
You may feel loss, as though you had lost a job…a job you may not have wanted in the first place, but still, one that has taken most of your attention, energy and time for a long time. And as you go from being overburdened with too many tasks to surprisingly long periods of free time, you may feel lost and not know what to do with it all. You may go from feeling needed to feeling left out of the loop. You may feel guilty, as though you reneged on a job you committed to do. All of this is very normal.
You may know, intellectually that your job isn’t done. Last week’s blog was all how your loved one still needs you to provide emotional and social care, coordination of services, and general overseeing. However, it may take a while to “get” this emotionally. As with any loss, you may go through phases of feeling guilt, anger and depression before you get to a place of acceptance where you can pick up and move on, in this new situation. Give yourself permission to feel these. Trying to stifle them simply makes them last longer.
Guilt can often make a caregiver super critical of the way the staff cares for their loved one. The underlying feeling (often, unrecognized, of course) is that if I can’t do anything personally, I can at least try to control how others are doing it. This is seldom helpful. While it is true that no one is going to do the physical care like you did, most care staff do a pretty good job. Naturally, if there really is a problem, you should to address it. But pick your battles! Don’t criticize unless there’s a real need. They may not do it just your way, but if it works, accept it. Instead, look for things to like, and compliment, compliment, compliment. It really will improve your loved one’s care!
Then there’s the depression…As you caregiving job changes, your whole feeling about yourself may change. You have been so invested in caregiving for so long that that’s how you defined yourself. Now, you ask, “Who am I?” Yes, you are still a caregiver, but even that has changed so much you really don’t know who you are anymore. Now is the time to think back to what made you happy “bc”…before caregiver. One spouse had always been good at “fixing things.” His daughter got him involved with Habitat for Humanity. Now the family has to make an appointment to see him, he is so involved!
Donna commented, “I just put my husband in memory care and now, I’m lost. I don’t know what to do, or even what I should be doing. I don’t know what I can do for him. I don’t know what to do with all the time I seem to have now.” We talked about how her husband still needs her, about the supportive care she still needed to provide. But then, I added, “Now is the time to start some of that self-care you haven’t had time or energy for in the past.” It turned out Donna liked to travel but of course, hadn’t been able to do for years. She has children in the area who are willing to stand in for her in the memory care center so that she can be gone for several weeks. She’s getting excited about planning her trip, “I know I’ll miss my husband, but the kids are there for him and they will keep me in the loop.”
You may not want to do something as involved as Habitat for Humanity or as drastic as a long trip, but this is still the time to do something just for you. Do you have hobby you miss? Friends you haven’t connected with for a long time, or only minimally? A book you’d like to read, if only you could find an uninterrupted hour? Or even a full night’s sleep? None of this is selfish…it will improve your physical and emotional health and make you a better caregiver. Go for it!
For information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body
Helen and James Whitworth are not doctors. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a physician's advice.