A Son’s Journey Into Hospice Care

 

There are many blogs that pertain to hospice care, but there are very few that talk about the scary side of hospice care. It is my desire to talk about what one can expect when you have a loved one that transitions quickly into what is called "imminent." Allow me to paint for you the beautiful to scary parts of hospice that you might not always hear.

There has to be an understanding that hospice care means so much to so many different people. For some, it can last a long time, and for others, just a short amount of time. As long as a person is digressing, the person can stay in the care of hospice. There comes a point where the person can no longer step on a scale, and so the medical professionals will resort to measuring arm circumference. The hospice staff resorted to that quickly after it became a lot for my dad to get out of bed.

The journey began for my father over a month ago when the medical staff did all they could for him. The joy of hospice care (and Medicare) is that the person receives regular in-home visits from the medical staff. All of my dad's supplies came at no cost. The social worker and nurse were fantastic people to work with. They always made it a priority to treat my dad with the utmost respect and dignity. Up until Thursday, August 27th, my dad would take a walk down the hall to do one load of laundry and maybe grab his mail. That all changed on the 28th when he could no longer get out of bed. Again, this blog will go into detail regarding what a person will deal with as a loved one goes into hospice care. I realize every story is different, but so many of them have similarities.

When my dad first moved to Waupaca in 2019, I would call him every other day. Many times it was every day. During the fall of 2022, I noticed a spot on the back of my dad's blue jeans, and that is when the downward spiral began. At this point, I was taking dad almost daily to his medical appointments and called every day. After wound care and other medical officials did all they could, I reminded my dad that he could move in with us. On the 28th, I came in to visit him that morning, and due to the fact he couldn't get out of bed, he ended up having an accident in the bed. It was at that moment the nurse showed up and changed him, etc. It sent me into a bit of a shock not knowing what to do, so I watched what they did. I learned that day that you can change a bed without having a person leave the bed. All CNAs and nurses already know this, but I never knew.

This went on for another day, and then my dad finally told his nurse, "I am moving in with my son." I was honored, scared, and more. It was at that moment we began to move Emma out of her bedroom and into a makeshift room in our basement. On Tuesday, August 1st, the hospital bed, commode, and bedside table were delivered to my house. The very next day, we moved my dad in. Gold Cross Ambulance came after I attempted to move him myself by getting him into a wheelchair and into the mobility taxi per the nurse's suggestion. My attempt failed, which is why we brought in Gold Cross. They could not get the gurney into his bedroom, so they used what looked like a big tarp with handles on it. They carried him out that way and put him onto the gurney. The same tactic was used to get him into his new bedroom at my house. This was very emotional to see, but I knew it had to be done.

The first night he was at our house on Wednesday, August 2nd I had a school board meeting to be at. Dad was comfortable in his room and ate just a little bit. His appetite changed drastically. I had to place his meds in his mouth and hold the bottle of water with a straw so that he could drink. That wasn’t the only bottle I had to hold. When someone is in hospice care, ready or not you are going to do things you may have never thought you would do and this was one of those times. My dad had to urinate and because he was so weak and slipping mentally, I held the urinal bottle for him so that he could relieve himself. Shortly there after he dirtied his adult pull-up and so I had to spring into action to change him. I was a wreck that night after doing all of that and fell asleep in tears and completely shocked. Nonetheless he is my dad and I was happy to do it. 

On Thursday morning, I had to leave to do some job training. I was thankful a hospice nurse came in to check in on dad and change him. Due to his size, my wife stepped in to help. Again, what a saint that I married. She also dressed his wounds before hospice. Given these wounds were on his backside, it made things very uncomfortable but my wife stepped right in to do it. Throughout the day we had his TV going and he was able to catch up on the Mandalorian series to help him engage his brain and get it off of his condition. 

On Thursday my wife made some homemade waffles and my dad only ate a small amount. His attitude changed as well. I asked him if he wanted to eat more but he said he is having a hard time swallowing which is typical of those in hospice care but I could not believe we were already there. We talked for quite awhile that night and he was very open. In between fading in and out with sleeping I asked him if he wants to keep fighting this. He said “Yes! I am going to keep on fighting”. He was indifferent on many different questions but still had strong opinions on other topics. That night I changed him, applied barrier cream to his butt, changed his bedding and said goodnight to him. I want to mention that when someone is bed ridden, you can expect to wash sheets every day. You don’t make a big deal out of it…you just do it. There is a smell in the air from said accidents but you just keep going on. We had a air purifier in his room and ran the A/C on low because at this point he was very warm. 

When Friday morning arrived, it was clear that my dad's condition had worsened. Although he could still talk a little, he had a severely dry throat and could barely swallow. The hospice nurse arrived and helped me change him and the bedding. It's important to utilize all the supplies provided by hospice, such as chucks pads, which are incredibly useful at this stage. 

During this time, we noticed that when my dad opened his eyes to speak a few words, he couldn't focus and his eyes appeared glassy. The nurse offered him his medication in a gentle manner, and he struggled to swallow the first pill. What happened with the next pill is something I will never forget. The nurse placed the pill in his mouth, he took a drink, and started to choke. Unable to cough, we adjusted the bed to help him clear his airway. It was at that moment that my father started tearing up while the nurse cradled his head and held his hand. She reassured him that we would prioritize his comfort and not administer any more pills. I noticed that his fingers were turning ashy in color, which concerned both the nurse and me. 

After the nurse finished her tasks and left, I checked on my dad five minutes later and found him asleep, breathing shallowly. I let him rest while I attended to some tasks around the house. Later on, I sat by his side, held his hand, and spoke heartfelt words to him. I reminded him of my love and gratitude for everything he had done. As his breaths became shallower and quicker, I witnessed him slowly open his eyes wide before closing them and passing away. I held his hand and called out to him, realizing that he had indeed left us. I immediately contacted the hospice nurse, who was shocked to hear about his rapid decline. Another hospice nurse later informed me that people tend to pass away more quickly when they feel comfortable in their surroundings. I truly believe that this was the case with my dad, as he knew he was surrounded by love and care in my home. Even little Noah, my son, would ask to say hi to grandpa, and my dad always responded to him. 

Being involved in home hospice care is messy, smelly, and it pushes you to do things you never imagined. However, as I told my wife, the initial fear quickly faded and became a normal part of life. I am grateful that I didn't miss out on the blessing of being there for my dad, just as he had always been there for me. As for how the kids and my wife handled it, I will save that for another blog. I must mention that my wife was incredibly supportive and rushed home from work to be by my side. 

I thought the emotional trauma of witnessing my dad's passing was over, but then the funeral home arrived, and everything started all over again. I won't mention specific names, but the handling of this part was less than professional. One lady brought a gurney, but due to the narrow hallways and tight corners in our ranch-style home, she brought in a smaller device that would have left my dad's legs and head hanging. Then she brought in a longer, more rigid device, and as she moved him back and forth, I will never forget the look on his face as his head flopped towards me. I started to panic and began rubbing my head, which caught the attention of the hospice nurse, who asked me to leave the room. We were both shocked by the lack of care. 

There came a point when the two ladies were struggling to lift my dad, so I had to step in and help. Eventually, my cousin arrived and also provided assistance. The whole experience was incredibly traumatic, and I don't say that lightly. Finally, my dad was loaded into the vehicle and taken to the local funeral home. 

All of these things I shared is not draw attention but rather prepare a person for what is to come when someone chooses home hospice. Again, it is mentally…emotionally and physically draining but I would not have had it any other way. I love my dad and am finding great peace in knowing he is in the arms of his Savior.