Living better with Niagara Hospice

I recently spent eight days in ENH due to pneumonia and was sent home with a bottle of oxygen. Once I arrived home, I had an in home oxygen generator delivered and set up. I was now virtually house bound due to my difficulty in going up and down the steps to get into my home. I was limited in the amount of time I could be away from my home due to needing oxygen bottles whenever I went out.

My best friend suggested I call Niagara Hospice. It was a hard decision. I hesitated calling them because I thought that meant I was giving up. I would never give up!

My last experience with Hospice was when my father in law passed away from cancer. Since then, Niagara Hospice has changed their focus. Niagara Hospice has evolved since then to meet the increasing needs of the seriously ill and their families. Their goal is to prevent and ease suffering, reduce hospitalizations and trips to the ER, all while improving quality of life. All this is provided at no additional costs to eligible patients

Honestly, the only reason I even considered it was to help make my care easier for my wife. I thought by having someone else helping with my care, she could take it a little bit easier.

There are several criteria for Hospice to provide palliative care. They include cancer, whether or not the patient is undergoing active treatment with radiation or chemotherapy, chronic obstructive pulmonary disease (COPD), congestive heart failure (CHF), progressive neurological disorders, advanced Alzheimer’s disease or other dementia, repeated hospitalizations or emergency room visits, breathing problems, depression and exhaustion, sleeping problems or fatigue and late-stage illnesses. I qualified with my COPD, cancer and repeated emergency room visits.

I first called Hospice on Tuesday morning, January 21st. By that afternoon a social worker and an intake nurse arrived at my home. We talked and they evaluated me for their program. By that afternoon they called to tell me I was eligible. That Friday my assigned nurse came over for meet and greet and to get a baseline assessment.

During the first week, a United States military veteran appeared at my door. He brought me a nice, framed certificate from Hospice thanking me for my service. We swapped war stories for a while before he left. A spiritual care counselor also came over to discuss any religious issues or life concerns

On January 28th, an aide showed up to help me with my personal care. She now comes twice a week to assist me with that.

On Wednesday, January 29th I called Hospice because I thought I had a Deep Vein Thrombosis. I have had these before and knew how they felt. Hospice called Buffalo Ultrasound and by noon they showed up with a portable Doppler machine. They verified my suspicion. A script was called in that day and I was started on blood thinners.

On January 30th, I woke up very early in the morning and something just didn’t feel right. I was restless and couldn’t sleep. I felt the oxygen coming out of the nose piece was less than usual. Donna, my wife traced the hose looking for problems. She found a hose that was kinked on the tank that put humidity into the oxygen stream. I had her unkink it and the proper flow was recovered. Because it was 4:30 in the morning I had her wrap the hose with painter’s tape to strengthen it and prevent another kink. Due to the fact it was so early and we had temporarily solved the problem, I waited till later to call. In the morning, we called Hospice to tell them the problem. My nurse contacted the oxygen concentrator company and they arrived later that morning to replace the hose.

That afternoon, being a Thursday, my nurse came for her regularly assigned visit. She tried to flush my port but had difficulty. After 2 tries, she called her office to schedule “the expert”. The next day, another nurse came over and was successful.

Over that weekend, I developed a rash on my leg. I called my nurse on Monday and she came right out to look at it. She called my primary care physician who also came over after his office hours to diagnose the problem. It was decided it was a reaction to some medication. Steroids were called into my pharmacy to combat this reaction. It seems to me that every “cure” comes with it’s own set of problems.

I am now visited by a regularly scheduled social worker who comes over to check on me and see if I have any concerns.

Each and every Hospice representative I met was helpful, respectful and sensitive to my needs and wants. I truly appreciate their attitude and concern. They always have a smile on their face and are very responsive when we call. It seems to me that they are working for Hospice because they really are concerned and it is not just a job. They seem like friends we have had for a long time.