Dear Carol: My husband developed Parkinson’s disease years ago, but I was able to care for him at home. Once he began to experience hallucinations and other mental symptoms, he was diagnosed with dementia with Lewy bodies. By then, I knew these challenges, along with his physical decline, were more than I could handle long-term. Our kids had wanted me to place him in a care facility for years and I refused, but last month I did just that.
Thankfully, my husband’s content with his care and I am, too. I spend a couple of hours with him each day and then return for supper most evenings. I’m also trying to do things to slowly restart my own life, but I still feel guilty about his placement. It doesn’t help that some of my friends who have never been in such a situation think that I should feel devastated by having to “give up.” I miss him terribly and placing him was awful, but after all these years I’m worn out. How do I stop feeling guilty that I also feel relieved? — AT.
Dear AT: My heart goes out to you as you make your way through this caregiver dilemma.
Let me remind you that you’ve been nothing less than heroic. Having now made the difficult decision to place your husband in a home that can provide him with safer care than you can alone is compassionate and correct. You’ve indicated in your letter how difficult this decision was to make, though just considering how long you’ve provided care, you’ve been making that point for years.
What you’ve done is face reality. You can’t destroy your health completely in an effort to prove to anyone, including yourself, that you are a loyal caregiver. By placing your husband in a good care home, you could be extending your own life. That means that you can continue to be his advocate and helpmate, which is vital for his well-being. Your task is to accept in your heart that you did the right thing for him.
If these “friends” don’t make an effort to enhance their shortsighted views and truly support you, limit the time you spend with them. If necessary, don’t see them at all for the time being. Move forward at your own pace, expanding your own life in a way that feels comfortable. Soak up the positives of what you and your husband have gained from this change. Remain an active part of his life.
Most of all, understand that while caregivers seem to carry tons of guilt, 99 percent of it is unearned. Society does this to us. We do it to ourselves, as well.
It’s time to let this go and take care of yourself while you continue to take care of your husband in a way that works under current circumstances. The fact that this also allows you to develop interests of your own is a benefit for you both and no reason to feel guilty.
Carol Bradley Bursack is a veteran caregiver and an established columnist. She is also a blogger, and the author of “Minding Our Elders: Caregivers Share Their Personal Stories.” Bradley Bursack hosts a website supporting caregivers and elders at www.mindingourelders.com. She can be reached through the contact form on her website.