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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 […]

November 18th, 2015|Blog|

A Sweater Stitched with Memories

Crafted from fine cotton yarn, the black cardigan sweater became a staple in my spring wardrobe after my mother bought it for me 10 years ago. Rediscovering it in the back of my closet last week, I suddenly recalled a happier memory of Mom—a time when I wasn’t overwhelmed by what social workers describe as “caregiver burnout.” And then came an unexpected flood of tears.

It’s not like me to fall apart over a sweater while I’m reorganizing my closet for a new season. But then again, my mother hasn’t been herself for several seasons, either. Things began to unravel after my son left for college—just when my husband and I were starting to enjoy the freedom of our newly emptied nest.

First, we noticed Mom was showing up at family gatherings with burns and bruises she couldn’t explain. Then her friends would call to report that she’d forgotten to show up for club meetings and lunch dates. She’d drive herself to the ER during her panic attacks, which started occurring with alarming frequency. Not long afterward, her doctors told me to confiscate her car keys. Mom was 79 and had been widowed for 16 years when she was officially diagnosed with vascular dementia. She was also battling heart disease and severe hearing loss. As her only child, I was handed full responsibility of her medical care along with a checklist outlining her worrisome diagnosis.

At the time, Mom lived alone in a condo near my house. She refused to consider any type of senior housing, regardless of the fact that she’d been in and out of the hospital half a dozen times, and averaged 45 medical visits annually. But no matter how tactfully I approached the topic of assisted living—and offered to schedule tours of the best facilities—she’d look at me […]

November 17th, 2015|Blog|

My Last Gift…

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 […]

November 16th, 2015|Blog|

Caring is a Team Effort

I’ve been a caregiver for my husband since about 2001 when he began having angina. My caregiving responsibilities have progressively increased and his health has progressively declined since he had triple heart bypass surgery in 2003. After the surgery, he had atrial fibrillation, which stayed. In addition to heart problems, he developed COPD from years of smoking. These are the biggies, but through the years there have been numerous diagnoses added from arthritis to gout and several hospital stays. He’s had several strokes as well.

Our marriage was one of those May-December marriages. My husband is 38 years older than I am. We’ve been married for 22 years and have one daughter together. Our daughter is now grown, but she was only eight years old when he had heart surgery. Trying to raise her and preserve some semblance of normalcy amidst a multitude of healthcare crises through the years was challenging. In her teen years, she helped with many caregiving responsibilities as we had limited outside support from friends or family.

Besides being a spouse and mother, I’m a nurse, so caregiving responsibilities have always naturally fallen to me in the family. I’ve mainly always worked in nursing less than part time, so I could be a family caregiver. In addition to being the primary caregiver for my spouse, I’ve done long distance caregiving for my mother and grandmother at times. I keep my eyes and ears open as there is always something new to learn on this caregiving journey and every time it seems I’ve got things figured out, something else seems to happen.

Last year after my husband fell and got a compound fracture, as well as his heart function had decreased (not related to the fall, just happened), we had to learn to be willing to accept outside help. […]

November 12th, 2015|Blog|

The Fearless Caregiver

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 […]

November 11th, 2015|Blog|

James Patterson and his Wife

Caregiver stories: James Patterson and his wife
I became a caregiver on January 1, 2005 after my wife was hospitalized with complications from chronic obstructive pulmonary disease (COPD). When she first got COPD, the first few months weren’t too bad, but then her condition deteriorated. She had to be placed on oxygen, but had a 50-foot tube connecting her to the oxygen concentrator that allowed her some mobility.

At first, she only needed help with more significant daily activities, but then over the years it became difficult for her to eat. Eventually, she needed more and more basic assistance and required a wheelchair. My wife and I have always been there for each other through 50 odd years of marriage, and this meant taking care of each other too. But, once she became ill, the balance just seemed to shift from being 50-50 to 60-40 to 70-30, and so on. Now I take care of all that I need to do plus what she needs done. It’s a very long process, becoming a caregiver, and you never realize you’ve begun until you have a chance to reflect. I have now been a caregiver for five years.

Being a caregiver is a big responsibility and it can be isolating. My wife and I used to be active in our community and enjoyed volunteering and social events. Now there’s too much to do and she can’t get out, so we stay at home-that’s a big change.

I think men, in particular, tend to think they can handle everything themselves and are not as comfortable asking for help. That’s a mistake – it’s important to get help when you need it and have support structures in place. Every day, I help my wife get in her wheelchair, dress and bath her, prepare meals and help her […]

November 5th, 2015|Blog|

Don’t hide behind the disease

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.”

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 […]

November 4th, 2015|Blog|

“Hello, I must be going…”

In celebration of National Care Givers Month, we’ll be sharing some caregiver stories that express the wide range of thoughts and emotions, some happy and some sad, that can come with being a caretaker. Sometimes being a caretaker can be an extremely challenging and thankless job, but other times, it can also be extremely rewarding and teach us life lessons that we would never have otherwise learned. But mostly, these people are sharing their stories, caregivers and care receivers alike, so that others like them can know that they’re not alone.

Today’s story comes from Caregiver.org and is told by Michaele O’Leary-Reiff

“Hello, I must be going…”

“Hello, I must be going …” read the note addressed to me and taped to the door of Allan Reiff’s office in the Philosophy/Humanities Department at our local community college. The year was 1983, and little did I know then, the dark truth hidden in those seemingly light-hearted words; the man I would eventually marry would be taken from me all too soon by the ravages of Alzheimer’s disease.

We had met the year before. I had  returned to school to get my license as a registered nurse. I needed some electives so enrolled in Allan’s philosophy class, which had been highly recommended. On the first day I was riveted to his words, when he said the world would be a more peaceful and equitable place if governments were run by Romanian gypsies and ballet dancers rather than politicians and dictators. Soon we were talking after class, meeting for coffee, and having long conversations about movies, books, politics, our children, and the meaning of life.

Ours was a mid-life relationship, both of us having been previously married. Between us we had six children, his two and my four. It was an exciting time for us. In 1988, we decided to […]

November 3rd, 2015|Blog|

Celebrating November as Home Care & Hospice Month

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 […]

November 2nd, 2015|Blog|

Learning the Unfamiliar Language of Home Care

GIVEN the tens of millions of people in retirement or about to enter it, it’s surprising how few plan for something most of them will eventually need: help doing basic tasks at home. But perhaps it is not so surprising: It’s like learning a difficult new language late in life.
Only about 1 percent of those aged 65 to 74 live in nursing homes, the Census Bureau reports. Most retirees continue to live at home as they age, even though many do not have relatives nearby to assist them as it becomes harder to handle daily activities because of declining health, mobility or cognitive difficulties.
Of those who need the help most, many won’t admit they need it or obtain assistance willingly on their own. They fear loss of independence and becoming a burden to their families. This is an issue I’m facing in my own family and it’s difficult to navigate.

For most older people, it is far preferable to stay at home rather than enter a nursing home. But it isn’t easy to make it work. Just ask Coleen Wagner, who lives in Saratoga, Calif., and has helped several relatives find home care. That includes, most recently, her mother-in-law, who was 85 and had dementia at the time. She has since died.
Home care, often referred to as caregiving or nonmedical in-home services, provides help with the activities of daily living. Professionals who perform these services may not need licensing or certification, although many are certified nursing assistants. Requirements vary from state to state.
“Home care is about quality of life and ensures that chronic conditions are being addressed and gives family caregivers peace of mind that their loved ones are safe at home,” said Phil Bongiorno, executive director of the Home Care Association of America, a trade group. “A lot of […]

October 28th, 2015|Blog|