Over the years, one thing that I have truly enjoyed is being a Justice of the Peace. It’s a wonderful experience to be a part of such a joyous day in the lives of two people as they start on their journey of life together. Unfortunately, my job as a dementia care specialist often deals more with these couples closer to the end of their journey and that is an equally emotional time but for very different reasons.
As the Officiant that has asked couples to swear before God and witnesses to care for each other “in sickness and in health, until death do you part,” I understand how difficult it is for a significant other to let go and “place” their loved one when being at home is no longer appropriate. The guilt they feel is enormous but they need to remember that caring for someone with dementia wasn’t part of that equation. If you are an at home caregiver you need to always remember that it’s a well know fact that “when guilt becomes a dominant motive in caregiving, help is clearly indicated.” That is help for you and not your loved one.
I want to share a personal story. As is often the case, my advice is a confession. After 61 years of marriage, my Aunt realized that she could no longer care for my Uncle in the house they literally built together. She tried but nearly ended up in the hospital herself. He was a fall risk, he could barely get around and with his dementia, he became more and more confused. Although, after she collaborated with her very supportive children, she decided to “place” my Uncle, the guilt she was experiencing was overwhelming. My wife (also a Master Trainer of Alzheimer’s care) and I made the decision to visit her and help her with this critical time of adjustment. One of the first questions I asked her was, “Do you think he would want you putting yourself in jeopardy for him? The second question was, doesn’t he deserve to be where he is safe and getting the care and attention he needs and deserves? The answer was obvious. He would have jumped out of a window at the thought of putting her in harms way. Yes, it took some time to adjust but for the first time in a long time she could rejoin The Woman’s Fellowship at her Church, enjoy a book and go out with friends and not have to worry if he was OK. He would have wanted that for her as well.
Here are some reminders to help you or someone you know deal with guilt.
1. You are in a “no win” situation. The disease will worsen in spite of your efforts.
2. Take pride in offering care and comfort as there is no cure.
3. Accept your limitations. You can’t be a perfectionist.
4. Don’t lose your sense of humor.
5. Remember, exercise reduces stress.
6. Don’t go it alone. Feel free to “vent” with family and/or friends.
7. Take a break and enlist help on a regular basis.
8. Remember, your loved one needs a physical and emotionally strong caregiver. Take care of yourself.
I was at a conference once where the speaker said if you ask many a caregiver how they’re doing they’ll say “FINE.” Translated it means “Frustrated Isolated Neglected and Exhausted. That doesn’t have to be the case.
If you have any questions please email me at firstname.lastname@example.org and I’ll answer them directly or in a future post. Meanwhile, remember to Join the Journey.