by Caregiver, Olga Sowchuk

The word ‘never,’ by definition, means in no way, not again, at no time, in no case. Never. Its a word that those of you who are brain injury survivors or caregivers of a brain injured loved one, have heard at some point. Was it in the beginning of this adventure, when your loved one lay in a coma and the doctors said he/she would never regain consciousness? Was it once your loved one entered therapy, and someone told you that he/she would never walk, talk, see, eat, feel, laugh? Was it further along when you were told that your loved one would never live at home, never be able to do anything on his or her own, or that things would never be the same?

Never is a long, long time. When my domestic partner, Al Calabrese, had his head-on collision on August11, 1995, the ER doctor said hed never make it to the NICU. When he made it to the NICU, the trauma physician said hed never make it to tomorrow. When tomorrow came, he said over and over, that Al would never be anything more than a vegetable, lying in a bed hooked to a feeding tube. He knew this because he had seen a thousand―no 2,000―cases like Als . . . there was no hope. Well, to me, never meant only one thing: never blindly believe the doctors and never give up. I didnt and neither did Al.

He sustained severe brain damage. Although his brain never swelled, as is often the case, he was leaking brain fluid through his ears, so this wasnt a good sign, they said. He had brain stem damage, occipital lobe damage, a broken throat, collapsed lung, and other areas of brain damage that at the time I was […]

Almost eight years ago, I was a divorced woman living in the house I had owned since 1989. However, I had become unemployed about 6 months before my husband left me. I was given alimony for eighteen months, was allowed to keep the house, for which we had already fallen behind in paying the mortgage, and my ex was given all of the bills we had. Unfortunately, he was diagnosed with cancer, and all debts and obligations were then turned back to me. . . . In the time I was unemployed I was trying to get a business idea going—in upholstery. My husband had been instrumental in helping get business, but I still managed to bring in some of my own . . . just not enough to save my house, and it was foreclosed in February 2008, at which time my parents took me in and gave me a home to live in.

At that time, they were both in good health, but were still glad to have me here, as they were nearing their eighties and could use some help and other company around the house. Since I moved in here, my parents have been hospitalized several times—three for Mom, and my Dad, four. At this point, they are 82 and 87 respectively. Mom has Parkinson’s and Mild Cognitive Disorder, and takes meds for blood pressure, depression, bone density loss, etc., and at 5’6″ only weighs 87 pounds. Dad has mobility issues and hearing loss. He’s 87, so you know there is some memory loss for him as well, although not near the scope of Mom’s; just normal aging, and maybe a selective memory.

I am one of five adult children in our family, but the only one without a spouse. I have a son and daughter, and […]

This year, 2013, has been a significant one for me and my family. On 18th May, we commemorated the 25th anniversary of my father’s home-going, memorializing his life with ads in our local papers. On 3rd October, and for the remainder of that month, we celebrated my mother’s 90th birthday. My status as their only child guaranteed my other status as the primary caregiver for both—for a period of 25 years.

Prior to this period, and oftentimes from great distances, I watched, learned, and assisted both my school-teacher mother and postal-worker father, together with their siblings, in the care for each set of their parents prior to their respective deaths between 1977 and 1992. During each of these periods, I was in different parts of the country and world: New York, Ghana, California, Botswana, and Florida. That knowledge of how to give care to aging parents was indeed powerful! Knowledge is power and I will add: “But, it is the application of that knowledge that empowers.”

Thus, it was not until I applied that knowledge that I became empowered in this “new” role. I learned not to take “NO” for an answer (from them at times and also from their medical providers). I demanded and received help from a variety of sources (our church, extended family, friends, colleagues, and social services agencies), and knew and understood the significance of taking care of myself first— through prayer and expanding my life-long relationship with God, knowing “I can do all things through Christ who strengthens me,” and also through my practice of Transcendental Meditation, a physical exercise program—all while volunteering, writing, public speaking, and spending as much time outdoors with friends and family as possible.

On Wednesday May 18th, 1988, as my father lay dying from the devastation of Metastatic Colon Cancer, floating in […]

Today’s caregiver story comes from Leonard and Kathryn Romney. When dealing with Alzheimer’s disease Leonard’s advice: “… talk about [what you’re going through] with others who can help refer you to resources and be part of your support team. Also, be open. Don’t hide behind the disease.”

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Caregiver stories: Leonard and Kathryn Romney
Interviewed October 29, 2010

I became a caregiver in August 2009 for my wife, Kathryn. After a series of tests Kathryn was diagnosed with early-stage Alzheimer’s disease. Kathryn and I have always taken care of each other. I’m not a caregiver because Kathryn has this disease. I’m a caregiver because I’m her husband.

We’re lucky. We’re both still healthy and active. Kathryn’s progression has been slow over the years. And while I’ve had to take on more responsibilities, she’s still able to do many things on her own–like being an active runner.

Her condition is still in the early stages, but I am worried about the future. I feel stressed sometimes when I read about the path this disease is going to take us. In order to prepare for the future we have taken several steps. First, we are building relationships with friends we have met through a local support group and by Kathryn’s being an Alzheimer’s Association Early-Stage Advisor. Second we have also talked with our children about what happens to mom if I pass away first. Next, we have also looked at our finances and made arrangements for long-term care.

A big frustration I have is dealing with my own shortcomings as a caregiver. For example, I can lose my patience when she asks about our schedule many times during the day. What that means to me is that I haven’t accepted what this disease is all about. So sometimes I struggle to handle this disease in a kind and […]

During November, the National Association for Home Care & Hospice (NAHC) will honor the home care and hospice community, including the millions of nurses, home care aides, therapists, and social workers who make a remarkable difference for the patients and families they serve. These heroic caregivers play a central role in our health care system and in homes across the nation. To recognize their efforts, NAHC calls upon all Americans to commemorate the power of caring by celebrating November as Home Care & Hospice Month.
NAHC honors this year’s National Home Care & Hospice Month with the following theme: Home Care and Hospice Delivers Freedom.

In the coming weeks NAHC will release new studies that show the increasing role of home care and hospice in health care. Whether measured in dollars spent or miles driven, the value of home care and hospice is vast and astonishing.

Home Care Aide Week takes place this year on November 8-14. For over 15 years, NAHC has used the second full week in November to highlight the many aides whose contributions are second to none as they bring personal warmth to the daily work of giving personal care. They play an invaluable role for their patients as caregivers, companions, and friends.

November is the perfect time to connect with your elected officials. Scheduling a meeting with your elected officials is one of the best ways to be a home health advocate, while also building positive relationships with your lawmakers. Face-to-face meetings give you the opportunity to ask lawmakers to support home care and hospice in-person, and from the perspective of the community that they represent. It is particularly important that we communicate NAHC’s priority issues.

“It is highly appropriate in November that we celebrate the nurses, therapists, aides, and other providers who choose to use their lives to serve our […]