I had heard of hospice before but never palliative care. We had been informed by the doctor that the hospital staff in charge of outpatient care would be here soon to explain the differences and what our options were. My mom had spent the last week in the hospital and she had improved enough to be sent home. She started this journey in the ER after Lisa and her sister insisted they get her an ambulance. Her health had deteriorated rapidly overnight and at almost 96, you don’t wait to see if they improve. The symptoms started the day after getting a seasonal flu shot. Achy, feverish, and tired with a deep cough and shallow breathing. When you live with someone old or at least see them on a daily basis, the changes you experience are more subtle than when your visits have more time between them. Thats why it was so shocking to watch her fade so dramatically from one day to the next and why the ambulance was called.

Our plans were changing quickly. We were to be hosting an intimate wedding in our condo for the eldest sister (the one helping Lisa get their mom to the hospital) in less than a week. Our condo was logical because mom lives in the same building as Lisa and I so travel is not a problem for someone with limited abilities. Walker or wheelchair, ride the elevator and “Boom” you’re there! This situation changed everything. There was no way she would be out of the hospital in time and even if she was, she wouldn’t have the strength to participate. The dinner and venue were cancelled and guests that were flying in were called. Thing is the wedding still needed to happen. This was special and mom was the guest of honor. She had been waiting 50 years for her oldest daughter to marry and to make it even more extraordinary, the groom was her high-school sweetheart. We started a conversation with the hospital and the administration. Could we use the newly refurbished chapel to hold this wedding? The answer was “Absolutely!” The minister was the easy part, she was a long time friend of the bride and very flexible. Our youngest son and his partner provided the stunning flowers. The most difficult part was getting mom to the wedding. They brought in a hoist with a sling to cradle her and lift her out of her hospital bed and into a wheelchair. Her face showed the extreme pain but her desire to go to a wedding won out. Lisa brought the attire she requested and was dressed after being moved to the ‘chair. The parade began. I followed carrying a beautiful arrangement that was massive and quite heavy. Flowers in a hospital are not uncommon but displays like this certainly are I think. Including the minister, there were 10 of us. It was beautiful. Hospital chapels are not usually a happy place but often one of sadness and or grief so we felt blessed. We left the flowers in the chapel for others to enjoy.

We decided on palliative care because we believed (hoped) with the right care she would gain enough strength to go home. It wouldn’t be the same as before but at least she’d be home. The hospital gave us some information about care centers available to her. In hindsight we should have questioned them about insurance coverage, or more specifically, what coverage her insurance actually covered. That painful truth came later the next day. We (Lisa, her sister and me) had started the search with the names provided by the hospital and compared it with recommendations made by friends and other family. The centers suggested by the hospital were never mentioned. We quickly found a care center to our liking and more importantly, would suit our mom. After the tour of the facility we learned the painful fact that her insurance wouldn’t pay for this. She had Medicare supplemental insurance that provided a lot of fluff but nothing helpful in our situation. Collectively the decision was made to pay out of pocket so as to provide the right environment for healing and improvement. The supervisor wanted to make one point very clear, the maximum time she could stay was 100 days, however, if she didn’t show positive improvement within the first two-weeks, we really needed to address the real possibility of hospice instead. On the way home Lisa insisted we visit one of the approved care centers. OMG! It was shocking to see the difference between them. Loud, overcrowded and not particularly clean looking. Scary how a fragile old person would be able to cope.

I won’t belabor it, she tried “a little” to improve her mobility but she has run out of gas and will never improve. Before sharing this truth with her we met with a hospice specialist that explained how it works. Hospice is to provide comfort and ease pain and suffering when possible but offers no curative options. It is end of life. We knew this but wasn’t sure how mom would react. Would she be angry? Would she argue with everyone and be defiant? She surprised us all and accepted it. While arrangements were being made to transport her home the more difficult challenge was in finding her 24 hour care. Lisa did an amazing job sorting this out. Fortunately because we had care givers attending to her daily needs already it made the process much quicker than we expected and were able to have it in place within a weekend.

Lisa and I knew we were in it for the long haul and hadn’t had a break so we decided to take a quick trip to Miami. Who am I kidding? This all fell on her shoulders not mine so all I could hope to do was be supportive. Plans were made and reservations set. We would leave two days after New Years Day. We were apprehensive but wanted a break before hand because we had no idea how long it would be. On New Years Day, Lisa and I went down to see her. Note: mom lives on the 2nd floor and we live on the 8th. It was surreal. She wouldn’t eat or drink and was hallucinating wildly. New Years Day is my birthday and we had friends and family coming over to help celebrate and all I could think of was she was dying. Lisa and I acknowledged we couldn’t leave her now. It made no sense to get on a plane and turn right around a fly back to plan a funeral. Plans were cancelled. Family was called to inform them of the dramatic changes so if they wanted to say their good-byes now was the time. It was hard on our kids to see her like this. She has helped raise them and is an integral part of their lives. Within two days she and I were starting to review her funeral program. She had planned in out in great detail in May of 2020 so I had a pretty good blueprint to work from. We are currently on revision number 5.

It has been over a month now and while she will never fully recover she has decided she can’t die until she (we) finish her program. I have explained to her that I am in no hurry to complete it if when I do she will die. We have learned several valuable lessons. The most important one is that because we are so close and basically live together, we won’t be as affected by her death as other members of the family that she her less frequently. That is bullshit! We will be every bit as devastated when she goes. The other thought is to get your Medicare right when your time comes. Find a competent insurance advisor that speaks the truth about your Medicare options. Finally, enjoy every day you have!