My husband has dementia and my goal is for him is to stay home as long as possible. Yet, after four years of living with the behaviors and chaos involved, there are days when it seems as if I just can’t be his care giver or provider one minute longer. The quick answer is “don’t take it personally, it’s the disease” but that’s easier said than done – this is a wearing, discouraging, and overwhelming journey many days. But yes, I could answer the same questions, remind him over and over, and listen to the same stories thirty and forty times.
Then, the coronavirus arrived and the stresses tripled. He doesn’t understand the virus, he is home with nothing to do, he can’t go anywhere, and he is unable to have company. He asks even more questions and doesn’t remember what is said from moment to moment. I am more fortunate than many caregivers, though. My family is supportive, money is not an issue, we have a lovely home, we are physically healthy, he takes care of his personal needs, and he is with me.
I was allowing the discouraged feelings to be; not trying to get rid of or manage them, and that was fairly effective. When I was particularly discouraged it helped to ask “what do I need right now?” and then meet that need be it taking a walk, talking to a friend, or playing the piano. The bottom line was to do something for me. However, after eight weeks of sheltering in place with no breaks, those strategies were no longer effective.The truth is:
1. My values won’t let me place him in a care facility.
2. Neither of us want to live in a retirement community.
3. Neither of us want a home care provider coming in to provide respite care.
4. I don’t want to be a caregiver; yet, I am choosing to do so for various reasons.
5. Having him home is overwhelming at times and yet he is doing okay. His short and long term are poor, but he tries and does his best at all times.
6. My coping skills are no longer enough.
Obviously, then, if I am to continue keeping him home, my personal care plan has to be adjusted. With this in mind, I am making six changes.
The first change is to ask family members to do things with him to give me a break as we did prior to the shelter in place order.
The second change is to do more things that make me happy: shopping online, having my nails done, and getting the carpet cleaned.
The third change is to let go of certain expectations about his capabilities and what he can accomplish.
The fourth change is to take charge – tell him what to do and how to do it rather than give him choices and let him figure out how to do something because he does better with that structure.
The fifth change is to give myself permission to work on my projects for periods of time.
Finally, I am researching helpful tips on line, challenging my perceptions, monitoring my self-talk, and improving my attitude.
I am experimenting with this new plan and will alter it as needed. Because despite the frustration and discouragement, my goal remains the same: having him stay home as long as he is safe and hurting no one
The person you care for may not have dementia but a chronic, debilitating or fatal illness. However, the issues remain the same – how to live well while caring for another. What suggestions might you have?