These are powerful words. It's a "cry from the wild" which will touch the heart of most caregivers. Many of us feel alone when we are trying to care for our aging parents and there are no siblings to help, or if siblings won't help with caregiving. When we have one parent who has dementia, it is hard. When we have two, it is often nearly unbearable.
My dad had dementia from surgery. There are many kinds of dementia. Mom developed a more subtle type of dementia, the type they used to call "senile dementia." Now it's called "organic brain disease." Whatever the type – Alzheimer's disease, vascular dementia, Pick's disease, dementia due to Parkinson's or just plain "organic brain disease," which sort of applies to them all - it's 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 those they are caring for. Some of those are adult children, lonely and depressed, isolated and frustrated, 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 awhile, my mom's dementia was just some minor memory loss and she was able to be a fairly active part of my dad's care team after his brain surgery left him demented. However, her dementia worsened and I was soon coping with both of my parents' demented behavior.
One scenario: 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'd also bring other treats and we'd have a party. Oh, yeah. I'd also bring cards for them to give to each other.
I would sign Dad's card to Mom, as he couldn't and didn't really know what it was. Mom would sign her card to him, but soon after would generally forget what it was for. I would then pile the things into Mom's walker bag and take her down the nursing home 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 - big smile on my face - give them each their cards for the other, 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, then bring Mom back to her room. Like a puppeteer, I'd arranged bodies, moved limbs, orchestrate a production. I'd go home exhausted.
Why did I do this, you ask? Because I didn't want to have to lie a week later when Mom become aware that their anniversary had passed, because she happened to be looking at her new calendar I brought for her wall.
I knew I'd 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 my self, sorry to say, it was all there. The seeming futility of the production was more draining than the actual activity.
So, my friend, you ask how do you cope with your frustration? You are a better person than I if you don't have times when you wonder why you do a lot of the things you do. Much of your frustration is grief, and even anger. Yes, anger. It's okay to say that. Your sister died and she left you with two demented parents. You are all alone. Logic tells you your sister didn't do this "to you" on purpose. But this isn't about logic. It's about your feelings and your feelings are human, painful and justified.
How do you cope with caregiving? Get support from people like those on this site. Get support from caregivers who feel what you are feeling and won't judge you for it. Get professional help, both with the care of your parents, by calling your Alzheimer's Association, and going online to your state's Web site. On the site, under "aging services" or some such phrasing, you will find "The Family Caregivers Support Program." They may have another name for it in your state, but they will have a form of the program because it's federally funded. They will help you find support. Lastly, please see a doctor for yourself. Emotional support from a professional may be needed. Medication may be needed.
You don't want to be a statistic. You need a life. Know that you aren't alone and seek out these resources. And please keep coming back to talk with us. Sometimes everything we do for those who can't remember what we did can seem worthless. But it's not. Other caregivers understand this. In the end, you be glad you did your best, whatever that is. And that's all you can do.
