"My mom and dad both have dementia. I am all alone taking care of them since my sister passed away. I have no one to help me. I get sad and frustrated with them both. How do I deal with my feelings?"
These are powerful words from one AgingCare.com forum participant. It is a cry that is all too familiar for many family caregivers and one which will touch the hearts of most readers. Many of us feel alone when we are trying to care for our aging parents and there are no siblings to help, or our siblings won't help. When we have one parent who has this disease, it is hard. When we have two, it is often nearly unbearable.
An Overlooked Impact of Dementia Care
There are many different kinds of dementia. My dad's condition resulted from surgery, while Mom's developed more subtly—the type they used to call "senile dementia." Now it is called "organic brain disease." Whatever the type, Alzheimer's disease, vascular, Pick's disease, Parkinson's-related or just plain "organic brain syndrome," it is painful for the caregiver. Sometimes the pain is so raw and isolating that the caregivers become more ill than those they are caring for.
Statistics vary, but upward of thirty percent of caregivers die before the people they are caring for. Some of those are adult children, lonely, depressed, isolated, frustrated and often torn by guilt. These caregivers can develop cancer, commit suicide, or have heart problems and other ill health that can likely be traced to the stress of caring for their loved ones.
For a while, my mom's disease consisted of minor memory loss, and she was able to be a fairly active part of my dad's care team after his surgery left him demented. However, as is to be expected, her condition worsened and I was soon coping with both of my parents' odd and forgetful behaviors.
For example, their wedding anniversary was the day after Christmas. I would always bring to the nursing home tiny bottles of champagne and their 25th anniversary champagne glasses. I would also bring other treats and we would have a party. I also brought cards for them to give to each other.
I would sign Dad's card to Mom, since he was unable to and didn't really know what it was. Mom would sign her card herslef, but soon after she would forget what it was for. I would then pile the things into Mom's walker bag and take her down the hallway to Dad's room. (They each had a private room on the same floor.)
Generally, I'd have to drag Dad out of foggy sleep, sit him up and, with a big smile on my face, give them each their cards to one another, explain what they were for, read them with gusto, pour champagne, explain again what they were doing, let Dad fall back to sleep in his chair, and then bring Mom back to her room. Like a puppeteer, I would arrange bodies, move limbs, orchestrate a production. Each time I left for home feeling exhausted.
Why did I do this? Because I didn't want to have to lie a week later when Mom become aware that their anniversary had passed, when she happened to be looking at her new calendar I brought for her wall.
I knew I would hear, "We missed our anniversary! Why didn't you…?" I'd hear this whether we "celebrated," or not. So, I did it. It felt like a sham, but I did it. How did I cope? After I got home, I cried. I cried for them. I cried for me. Pain, frustration, anger, exhaustion, pity, for them and myself, sorry to say, it was all there. The seeming futility of the production was more draining than the activity itself.
Facing Reality and Asking for Help
So, how are we caregivers supposed to cope with such frustration? Much of it stems from grief, and even anger. It is okay to say that. In the case of our fellow caregiver from the forum, her sister died and left her with two demented parents. She is all alone. Logic tells us that her sister did not do this "to her" on purpose. But caregiving is rarely based on pure logic. This about her feelings, and these feelings are human and justified.
Aside from the emotional aspect, how are we to cope with caregiving itself? The simple answer is to seek help. Get support from people like those on this site. Get support from caregivers who have felt what you are feeling and will not judge you for it. Get professional help caring for your parents by calling your local Area Agency on Aging and beginning a search for in-home care, assisted living, memory care, or nursing home care. Lastly, please see a doctor for yourself. Your health is important to begin with, but now two other people's welfare depends on you. Neglecting your own needs to see to theirs does not benefit your parents in the long run. Emotional support from a professional may be necessary as well, and, in some cases, medication may be needed.
You do not want to be a statistic. You need and deserve a life. Know that you are not alone and seek out these resources. And please keep coming back to talk with us. Sometimes everything we do for those who cannot remember our efforts can seem worthless, but it's not. Fellow caregivers understand this better than anyone else. In the end, you will be glad you did your personal best, whatever that may be. That is all you can do.