I thought about writing this blog post because I was asked what the difference was between a typical hospice where you are an inpatient and home hospice. Having had no experience with the typical inpatient setting there is not much I can say about it. I did, however, visit two traditional hospices in my area not too long ago to check them out in order to give my husband a brief respite. This is what I discovered.
The first hospice was the Hock Family Pavilion run by Duke University Health Systems. It was not easy from the outside to recognize it as a hospice. The outside looked like an older style home setting in Durham. I liked that it was set back quite a bit from the main road. When my husband and I visited, we did so without an appointment. We were greeted by a volunteer who was sitting at the front desk. She took us to see a typical patient’s room which was vacant. I immediately fell in love with the soothing yellow color scheme. The sun was shining through the window which gave me a welcoming and homey feeling. The room was large and had a sofa for visitors. The bathroom/shower area looked like it would be a tight fit for bathing with an aide. The room we were shown happened to be located adjacent the nurses’ station. A nurse was summoned and she readily answered all of our questions.
The downside to the Hock Family Pavilion is that you cannot schedule your stay. The facility only has 12 rooms available for patients. There is a waiting list for the five-day respite period. You literally are called the day before a room becomes available. I found a video on YouTube that I feel gives a good depiction of the Hock Family Pavilion and you can view it by clicking here
The second hospice we visited that day was located in Raleigh, a bit further from my home. This facility was run by Transitions Lifecare. We had used Transitions when I received palliative care. Their services at that time were excellent.
When we arrived at the Transitions facility there was no one at the front desk to greet us when we arrived. After a while a volunteer coordinator showed up and she took us back to see a room. As I passed through the door separating the front entrance area from the rest of the facility, that little voice in my head was shouting nursing home. The only difference was that unlike other nursing homes I have been in, there were no patients out in the hallways. But this was a hospice so I would presume that patients do not typically congregate in the hallways. There was a huge nursing station which appeared to be the hub for the three or four hallways jutting out from the station.
The room we were shown depressed me. It was dark without a speck of sunlight to brighten up the room. Perhaps a twist of the window shade might have made a huge difference, but the volunteer did not make a move to do so. There was no one else associated with the facility who was available to speak to us at that time and the volunteer was unable to answer many of our questions. I was not motivated to spend any time in their facility. I was not able to find a video depicting the inside of the facility that would be equivalent to the Hock video.
Hospice at home is the other side of the coin toss. Reading comments on Facebook, it appears that not everyone has the same in-home experience. But this is my blog, so, it will be my experience you read about.
While both facilities seemed competent, my husband and I decided to go with Duke Home and Hospice for reasons of our own which included the fact that they cover most of my medications, work closely with the Duke ALS Clinic, have personnel with actual experience with persons living with ALS (PALS), use the durable medical equipment company and therapist that is at the clinic, and will defer to my doctor on all decisions that deal with my ALS. There was no chance that I would be willing to give up my doctor, a man who has dedicated his entire career to me! (I like to believe that is true, but, in fact, his career in neurology has been devoted to ALS.)
Hospice at home means that I can see a second medical team devoted to me. I can also travel to the ALS Clinic for quarterly appointments as long as I am able to do so. I have a nurse manager who visits weekly and oversees the care I receive. I also have hospice aides who assist with bathing or range of motion exercises to keep my joints from freezing up. Other pluses are that there is a hospice chaplain, social worker, and volunteer whose services I can also utilize. Of course, bereavement services are available as well.
My volunteer is wonderful and I always feel better when she is here. She has a cheerful disposition and leaves me feeling better. Right now we are sorting through photos for my memorial video. If I don’t feel up to the task, we watch TV (we like the same shows!) or do something else.
The social worker helps find resources for the things I want to do while I still can. No matter if it is selling jewelry or planning a trip, she always finds an answer for me.
Now do not misunderstand me, when we initially made our decision to go with the Duke Hospice we had a tough time getting the administration to work with us. We were receiving phone calls for all kinds of services, but we had a difficult time getting a nurse manager assigned to me. My husband finally worked it out. The nurse who was ultimately assigned is very caring and professional. Don’t get me wrong, the nurses I saw previously were equally as competent, caring and professional, but the first had handed in her resignation two weeks earlier, the second had no ALS experience, and the third was an intake nurse and had not been involved with patient care for quite some time. We have not been able to figure out how to get the hospice aides here before noontime, so once a week I have a long morning in bed. It works out okay unless I have to be somewhere that day.
To sum it all up, hospice at home can work for you if you have the right caregiver at home. My husband is my caregiver, best friend and ALS advocate. We are not perfect, and my husband deals with a lot of ALS bullshit, especially because of my issue with pseudo-bulbar affect (PBA). But he’s still here. We do not like the idea that we were given an estimate of six months left for me. That six months could come right on time to coincidence with the holidays. So in the meantime, we deal with the Beast the best we can. We hope to soar past the end of 2018.
If you are reading this, you may know that I have amyotrophic lateral sclerosis (ALS) also referred to as Lou Gehrig’s Disease. I had my first telemedicine visit with my doctor last month. Telemedicine allows patients to stay at home and still visit their doctor. I had my visit using my iPad. The connection and setup are facilitated before the visit by technicians working with the Duke ALS Clinic. It’s not possible, of course, to see the multitude of other specialists that I would usually see during a visit to the clinic, but it does help to have an awesome doctor like mine.
ALS and ME 