Dear Carol: My mother, who was in her early 80s, was doing well except for arthritis and high blood pressure. Then she fell and broke her hip. After surgery, she seemed not just foggy but completely irrational. The doctor said that this wasn’t unusual for someone her age considering what she’d been through and that she’d get better. Mom spent several days in the hospital and was then moved to a nursing home to recover and receive physical therapy. The staff was terrific with Mom. When I asked them if Mom would recover mentally, they were non-committal. They didn’t want to say that she wouldn’t but they seemed less sure than the doctor. As the weeks went by she didn’t improve mentally, though she was doing okay physically. The, five weeks after the surgery, she suddenly died. It’s hard to accept. How common is this? – Terri
...Now her parents are getting frail. Nancy had been through a lot of therapy so she could learn to cope with her childhood issues. She's come to terms with the fact that her father did what he thought he was supposed to do. She rightly felt, as a child, that he should recognize and stop the abuse her mother was doling out. Through therapy, she has learned to forgive her father for his lack of involvement and the fact that he didn't stop the abuse.
She's learned that he likely didn't know about a lot of it. She's also learned that he probably was in denial about what he did suspect, because he really didn't know what to do. He was wrong, but she's managed to forgive him for what he didn't know, and for what he didn't do about what he did know. Part of this is that her father recognizes where he failed. As he ages – and he's the one who is showing the need for care at this point – she feels she is capable of caring for him, in some "hands-on" capacity.
As caregivers, the first thing to go is the time, or even the energy and desire, to maintain friendships. Even maintaining friendships that go back years can seem like just one more thing to do when a caregiver is so swamped with demands. So, caregivers stop seeing friends, hence friends stop asking them to do anything fun. Friends get tired of being turned down. And caregivers forget that life was once fun. They are too busy giving care to everyone else to even notice the loss.
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?
One of the positive parts of being a family caregiver is the opportunity for emotional growth. We can develop increased compassion, patience, and tolerance, as well as humor. Yes, we often shed tears over our loved one’s illness and often over our feelings of powerlessness. But humor may be the saving grace that keeps us from drowning in sorrow. Some situations, of course, leave no room for laughter. But some tough times can offer moments of levity if we choose to recognize them. My sister, Beth, and I experienced what to some people may be a rather macabre situation during the three days our mother was going through the death process. If we hadn’t maintained our senses of humor, I’m not sure how we would have handled those sad, seemingly endless days.
The stories in this fine book showed us how others have gone through similar things with their families and that is somehow reassuring. There are some helpful suggestions but mostly there is the recognition that others went through the same thing. All we can do is our best. That is greatly reassuring during these difficult emotional times. If you are a caregiver, this is a must read. - Delores Edwards
Millions of aging boomers wonder if their memory lapses are from normal aging, or a sign that they are developing Alzheimer’s. There’s some basis for the worry. According to the Alzheimer’s Association, more than 5 million people in the U.S. are living with it. One in three seniors will die with Alzheimer’s or another type of dementia.
While these statistics are scary, you shouldn't let them cloud the reality that many of us will age normally and will not develop AD, or any other type of dementia. Certainly, we will have some memory changes as we age. Improvements in our lifestyle may help mitigate some of those. Other changes we’ll just have to live with. So what is normal memory loss and when should we worry?
A frequent problem expressed among adult children is that their parents aren't truthful with their doctors. While the parent may complain at home of pain, exhibit memory problems and accuse the family of theft when he or she can't locate a commonly used item, the moment the parent faces their doctor a change occurs. Like an actor on stage, the person sitting in front of the doctor becomes animated and charming. My mom was a supreme example.
You're close with your parents and you see them needing help. You've watched their decline, but so far you've handled it and they've stayed in their home. You've hired out the yard work and much of the housework. But it's time now for something different. Dad's often confused and Mom's diabetes isn't being cared for properly. You are wondering, should they move in with you? Years back, having one or both parents move in with the family was relatively common. My grandmother moved in with our family when my brother and I were teens and our little sister was a toddler. My parents built a new home that could accommodate privacy for Grandma as well as a family with teenagers and a toddler. It worked.
An amazing book of stories that will touch your heart and encourage you, especially if you are a caregiver. Carol Bradley Bursack also has an excellent web site devoted to the elderly and their caregivers. - Carol Heilman
Dear Readers: As you know, I rarely use guest posts, but this is one of my exceptions. Financial aid for caregivers is needed. Please forward to other caregivers who may want to apply. - Carol
In 2015, Kathi Koll started a foundation to help caregivers in need. The issue was a personal one for her. A little more than 10 years before, her husband had suffered a massive stroke that left him paralyzed from the neck down. Kathi became Don's caregiver for six and half years before his passing in 2011 and learned firsthand about the many challenges of caregiving, including the emotional ups and downs, the changes to one's relationship, and all sorts of new practical matters she needed to address.
By suddenly becoming a caregiver, Kathi dealt with intense anxiety and grief and had to completely reorient her life. But through that process, she also learned how to embrace a new normal, nurture love, and handle her many new life stresses in a way that also made those years filled with fond memories despite the catastrophic change that had occurred.
Even after Don died, caregiving has remained a large part of Kathi's world through her work with the Kathi Koll Foundation, which she created to help other caregivers who were struggling.
Her organization provides small subsidies, ranging from $500 to $1,500 to caregivers in need. In addition, the foundation offers guidance to caregivers who may be struggling with the many new demands on them.
For the small grants, applications are available at http://www.kathikollfoundation.org/caregivers/kathi's_caregivers. Assistance can be provided for specific items, such as rent, utility bills, grocery cards, or a wheelchair. To qualify, an applicant's income must be less than $28,000 for an individual caregiver or $34,000 for someone with minor dependent children.
In addition, the website provides helpful articles and videos about issues caregivers often face, and the foundation offers community outreach. For example, speakers can share insights with groups about many caregiving issues, such as living life after a stroke, the immense anxiety that accompanies a catastrophic event, how to manage the expectations of loved ones, coping with the continuum of grief, readjusting to a new life, working toward new, simpler goals, how to improve a patient's emotional care, finding happiness and learning how to love life again.
The idea is to help as many caregivers as possible as they endeavor to address their loved ones' needs.
People with Alzheimer's disease and other types of dementia often live in an altered reality that doesn't mesh with ours; yet their perceptions are as real to them as our perceptions are to us. That's a tough concept for many adult children and spouses of people with dementia to absorb. Validation of our loved one's reality is very often the kindest, most respectful response to their altered world that we can provide. In order to offer that validation without coming across as condescending, we need to understand the reason behind "therapeutic fibbing"—as validation therapy is sometimes called.