Many adults sit by the side of their dying loved ones, sometimes for days, working on accepting the loss of their physical presence and what this loss means in their lives. Then, a spouse, parent, child or friend suddenly rallies, becomes more stable and in some cases wants to talk. We grasp at what seems to be a turnaround and sigh with relief. They are going to hang on for a while; or are they?
Dear Carol: My mother lives in an assisted living facility. She has arthritic pain and is in the early stages of Alzheimer’s, but she usually does well with the support that she has. When I visited her last Saturday evening she seemed upset and confused and she told me that she didn’t feel well. I suggested that she rest and reminded her that I’d see her in the chapel the next day for services. The next morning it seemed like a lot of the residents in the chapel were disgruntled, including Mom, who hadn’t improved overnight. We’d had a huge air pressure change in the last day, and I began to wonder if weather causing problems with health is myth or fact. I even mentioned it to one of the nurses after I escorted Mom back to the common room. The nurse nodded her head and said, “Oh, yes. We sure see it here.” She said that a full moon affects the residents, too. Now I'm beginning to wonder if there is something to this idea. What do you think? Jen
Wouldn't it be nice to be a caregiver who had only loving thoughts every moment of the caregiving day? Maybe there are caregivers like that. If you are one of them, I truly congratulate you. Most of us who have been through years of caregiving will not fall into that category. Here's a sampling of caregiver thoughts that I've heard people talk about. You'll likely feel better just reading them.
As a longtime family caregiver who provided, and continues to provide, differing levels of care for loved ones with illnesses, I can attest to the fact that caregiving can be unimaginably stressful. For dementia caregivers, the stress is even more extreme. Only lately have we seen the results of studies that have followed family caregivers. One of the most scientific, in that it uses hard physical evidence, was published last spring. The study, by Ohio State University in conjunction with the National Institute on Aging, showed that caregivers may have their life span shortened by four to eight years.
Dear Carol: My mom passed away a month ago from a major stroke. Since her death, I seem to either be in a fog or collapsing into tears. My sister, Carolyn, had been caring for mom until two years ago, but then Carolyn had a sudden heart attack and died. She was only 43. Mom then came to live with us. Mom had COPD and heart disease. My husband has always been a rock of support and love and my two kids have handled Mom's death well. They are trying to help me even though they, too, are grieving their aunt and their grandma. I’m the one who is a mess. I miss my mom more than I ever thought possible. My grief seems to be more consuming than that of other caregivers who’ve lost a parent. I’m not sure what to do with my overwhelming feelings. I’m not even sure what I’m asking for except that I need guidance. SC
Our culture is steeped in language that makes accepting the terminal diagnosis of ourselves or a loved one more difficult to accept than it needs to be. Doctors say, “I’m sorry, there’s nothing more we can do. You might want to look into hospice care.” Patients tell their doctors that they want “aggressive treatment,” until there is nothing else that can be done, then they will go on hospice care.The crux of these conversations is that medicine will do everything possible and then when you give up you will go on hospice care.
It seems shocking to hear people ask whether dementia, particularly Alzheimer’s since it’s the best known, is as hard on the caregiver as it is on the person with the disease. After all, developing dementia of any kind is one of our greatest fears, even overtaking cancer. A caregiver who asks this question must be incredibly heartless and selfish, right? Yet, people who've never been a caregiver for someone with dementia need to think this through. When a loved one develops dementia, both the care receiver and the caregiver have entered an incredibly challenging time of their lives.
Many dementia caregivers feel as though they are treading water just to avoid sinking under the often exhausting pressures associated with dementia care. But consciously changing your attitude can, with practice, significantly change how your days, and those of your loved one, unfold. Here are some tips to get started.
You’re 76 and are having memory problems beyond the occasional slip. Last month, you drove in circles for an hour because you forgot how to get home from the same grocery store where you’ve shopped for three decades...You’re 57 and still rising in your career. At least you were rising up until the last six months when you were told that you are upsetting clients because you’ve become short tempered.
Of course, we don't always make the right call regarding every circumstance. But we do our best. I'd hazard a guess that the most painful decision for most of us to make is whether or not it's in our loved one's best interests to place him or her in a nursing home. If it is also in our best interest, then the guilt looms even larger.