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In the middle of October 2023, I was in the Redwood City Kaiser hospital to treat some fluid retention issues. I’ve had heart issues for years, including several surgeries, so being in the hospital was nothing new. I thought this visit was fairly routine as well, but I was surprised by an official diagnosis of severe chronic heart failure. There soon followed a visit from both the Redwood City Kaiser palliative care team and the hospice care team. I was to be released from the hospital into home hospice care.
I was stunned. Hospice was a very grim diagnosis. Let me tell you what it’s meant for me.
The first big change was at my house. My second-floor bedroom was now unnecessary. My house was quickly crowded with an adjustable hospital bed in my living room, multiple oxygen tanks and respirators, a wheelchair, a walker, a stool for showering and a portable commode. All provided for free by the hospice even though, fortunately, I haven’t yet needed most of it.
Secondly, I found a well-moderated and helpful chronic heart failure group on FaceBook that showed that “hospice” did not mean a looming death sentence. This info was a nice confirmation of what the hospital’s care team had also said. Some people had been in hospice for quite a long time. Some had even been in hospice and done so well and been stable for so long that they “graduated” out of hospice. My fears of not making it to Thanksgiving were gone.
Suddenly, I had a full hospice team at my beck and call. There was a 24/7/365 phone number I could call if I needed help, had a significant question, or needed to speak to my recently-assigned hospice nurse. Over the months I have had to call several times and it was always a helpful experience.
The hospice nurse assigned to me makes weekly visits, and when she is here (or one of her substitutes), she frequently contacts the hospice doctor with questions about medications, various treatment options, and general queries. If the doctor is unavailable, the nurse contacts them later and gets back to me—usually the same day.
The doctor took charge of all my medications, whether they were related to the heart failure or not. I found that to be true of hospice in general: I didn’t have to make more than one phone call or send one text to get a resolution to my situation.
And I decided early after my diagnosis not to give up. I have made lifestyle changes. I have to monitor my fluids and sodium intake. But I refuse to spend my days sitting in a chair or lying in my hospital bed watching TV. Certainly, I’ve had to make some adjustments. For example, I don’t drive anymore. But I do everything I can to stay active and involved. I still go out for coffee, to lunch with friends or my wife, to buy groceries or other things, etc. In the past six months, I have read several Elizabethan plays and taken online courses on Shakespeare, Greek Mythology and Ancient Egyptian History, and I intend to keep learning. So many parts of the world are still fully accessible to me, and I want to explore them. I have a positive attitude, and in many ways, my life is better than it was for a long time before my diagnosis.
There are probably differences in hospices from place to place, but I found that “hospice” is more than the doom and gloom the word traditionally conjures. It’s not what it is shown on TV or what it used to mean. It can be a positive, long-lasting process for a significant medical situation. Judging by the hospice care team at Redwood City Kaiser, it makes a difficult situation so much easier.
Douglas MacGowan is a 24-year resident of Redwood City and has been a part-time freelance writer since 1994, when his first article was published. Over the years he has written books and articles about 19th-century British history, abnormal psychology and his latest book, “The Irish Sky,” is a picture book he published with his sister about Irish Mythology.
He has blogged for Pulse previously and is happy to be back!
