By Ashley Horst
Fundraising & Marketing Coordinator

It seems appropriate that today, Independence Day, we talk about freedom and independence – and in the story below, how that is impacted by aging.

People with serious illnesses often lose their independence. Depending on the illness, this may happen suddenly—like when a stroke occurs—or gradually as the symptoms of the disease worsen. For those with Alzheimer’s or dementia, it may start with no longer being able to take care of one’s own finances and progress to being unable to walk, talk and care for one’s self. For those with heart or lung disease, their disease may keep them from doing the things that they enjoy because even short walks leave them out of breath and gasping for air.

Not only does this loss of independence affect the person with the illness but it often impacts their caregivers’ independence, too.

Looking back, I know now that I didn’t recognize that this was happening to my grandfather when my grandmother was ill in the early 2000s.

My grandmother had heart disease and dementia. I wish at the time I had understood what was happening. Because my grandfather was a very independent man who was absolutely devoted to my grandmother, I don’t think many in the family—aside from my mom and her sisters—really understood that she was coming toward the end of her life. I’m not even sure that he understood what the severity of her illness meant.

I had only been working for Hospice of the Panhandle for three weeks when she passed away. If I had known then what I know now, I would have tried my best to get my grandfather to accept help from Hospice of the Panhandle. I can’t say that I would have been successful. One of my cousins worked for a hospice on the eastern shore at the time and had suggested hospice, but my grandfather—independent to a fault—wouldn’t accept the help. After my grandmother passed, I began to see how hard the last years had been on my grandfather and on one of my aunts, who had taken on a lot of the caregiving.

My grandmother’s heart disease made it difficult for her to maintain her independence. She could no longer go to the grocery store or even make a sandwich for lunch. Then she couldn’t get out of bed on her own and walking short distances became difficult. Finally, she lost her ability to provide much of her own personal care and was pretty much bedbound. Through all of this though, she maintained an attitude of grace and cheer—part of this was just her personality and part of it was because of the dementia. Either way, I’m glad that it didn’t bother her.

Her limitations though became my grandfather’s limitations.

He and my aunt provided most of her personal care. He didn’t feel comfortable leaving her alone so he only left the house if someone could come and stay with her. And, in my perception, he was unprepared for the day that my grandmother passed which, I believe, increased his grief and accelerated the dementia that he developed after her death.

Having seen and talked to many families who have gone through similar situations, I can see how things may have been different if my grandmother had received hospice care. My grandmother’s personal care could have been provided by hospice aides who are trained to provide that type of care. Volunteers could have come and sat with my grandmother to give my grandfather a break. Not only would she have loved the company, but it would have given him back a little bit of independence to go to the store or the barber, to go fishing at Poorhouse Farm for an hour or so, or just run to Burger King and get a Whopper, which was one of his favorites.

A hospice nurse would have explained what my grandmother would experience as her illness worsened and we’d have understood how serious her condition really was. My grandfather would have been better prepared for the day that she died and already connected to a grief counselor who could provide support to him throughout the end stages of her illness. And, while I know that he still would have grieved, maybe his grief would have been different if he’d been more prepared.

Losing your independence is a concern of many of aging adults and those who have chronic or progressive illnesses.

The hidden cost of chronic and progressive diseases though is the loss of independence for their caregivers.

Most who are on the outside looking in don’t recognize how restricted and isolated their worlds become when their day-to-day lives are consumed with providing care for their loved ones.

Hospice care can help restore some of this independence. When a caregiver can turn over some of the personal care tasks to a hospice aide, that frees the caregiver up to drink a cup of coffee and complete a crossword puzzle or even get some work done for those who are working from home while caring for their loved one. Respite visits can be provided by volunteers (all of whom have passed a background check and completed a very thorough training program) so that caregivers can leave the home for a couple of hours.

And the education that can be provided by the hospice nurses and social workers can give independence by allowing the patient and his or her caregiver the ability to make informed decisions regarding this last stage of their lives together.

I wish this had been my family’s experience through my grandmother’s illness and her passing. I feel like we missed out on a lot because she didn’t have hospice care.

If you or a loved one are going through a similar situation, please don’t hesitate to reach out to Hospice of the Panhandle for help.

Hospice’s trained staff and volunteers are available to any eligible person in Berkeley, Hampshire, Jefferson or Morgan counties.

Hospice of the Panhandle provides professional medical care and volunteer support to individuals and their families in the last phases of illness. For those who aren’t eligible for hospice care, Hospice of the Panhandle also offers a program called Panhandle Palliative Services to the residents of Berkeley and Jefferson County. Panhandle Palliative Services offers support to any individual who is struggling to manage one or more chronic illness.

For more information about hospice care or Panhandle Palliative Services, please call (304) 264-0406 or go to hospiceotp.org.

Ashley Horst is the fundraising and marketing coordinator with Hospice of the Panhandle. She has worked for the agency for the past 14 years.