TLG&TLTA Part 3-Hospice

DustyMark's Journey 3 Comments

May 30th 2022

We talked about hospice maybe once. I had learned that you do not have to be on deaths door to call them in. They can be involved in palliative care for a while. I really was quite naive when it came to hospice. I pictured a hospital set up at your house…a nurse there to care for him…me just taking time to hold his hand and talk to him…a very peaceful comforting time. That is not what we got.

We did arrive home before the ambulance and were able to settle a little. It was weird to see a bed in my living room, the reality of it was very sad. When the ambulance arrived the two lady EMT’s got him as far as the steps but they were unable to get the gurney up the stairs and so they were going lift his bedsheet and carry him across the concrete pad and up 5 stairs, hammock style. This was the issue I had brought up in the last post…I had zero confidence those two women (all of 5′ and the other lanky and thin) could get Mark up the stairs safely and comfortably. If a 300 pound man trapped was in his car or on a 3rd story floor….and these two ladies showed in the ambulance…they would not be able to help him. They cannot complete their job and they should not be doing it. I asked Karson to come out and between the 4 of us we were able to use the sheets and get him up into the house and into his bed. I didn’t like that at all. It seemed very unprofessional.

The next day and half was crazy. I was to administer meds orally through a syringe every few hours. He needed liquid morphine and an anti-nausea. That seemed simple enough but it got complicated. Family members came over…Mark’s sister and family I remember for sure but the rest for Monday is a blur. The hospice nurse came and “checked him” into hospice care and did a quick overall assessment of him. I was concerned about the medication since he had been on xtampa 24 hours and this just didn’t seem like enough. She called the doctor and he immediently upped the dosage and that is what I administered to him until the next morning. He still wanted to keep getting up…sitting up and moving around. He wasn’t comfortable. He was still in alot of pain. Monday night Karson and Abby were there with their puppy, and Felicity stayed with the baby as well. We put on a movie and we all stayed in the living room with Mark. I stayed up for a second night…maybe dozing a bit on the sofa…I don’t really remember. I know I woke once and he had gotten to the bedroom. It was frustrating that I couldn’t keep him still and comfortable. I got up and made coffee and it was quiet so I opened his Bible to where he had been reading and read aloud to him. It was Romans 12 I believe.

Tuesday there was alot going on around me but I was very much in Mark mode so I didn’t notice alot of it. The hospice nurse came by 9am and she did an assessment and then called the doctor. When she came in she apologized to me for UofM dong a terrible job with his pain managment. They sent him home on way too low of a dosage and that I was going to have to play catch up until he is comfortable. To me….thats the ONE thing you get right in this situation. You are sending a man home to die in the comfort of his home. Make sure he is comfortable. I’ve been doing the math since all of this and the amount of morphine I was giving him never added up to the oxycodone MLs for MLs, however they are different drugs. The nurses witnessed him trying to get up, wanting to walk to the sofa, wanting to lay on his belly etc. They said he for sure wasn’t comfortable and that we needed to change that. Also the anti-nausea he was on tends to make one anxious so I asked for them to change that to one more calming. We completely changed the dosage of his meds and I was to administer them every hour. People were there…moving from front porch to back porch, some lingering in the kitchen. Mark got up and wanted to go to the porch but I didn’t want him to, however, he was insistant. Its not like he can over power anyone but you also want to help him do what he wanted. We had to get a chair for him but it wasn’t 2 minutes and he needed to come back in. We would get him settled in his bed and he would start grabbing at the side bars again…wanting to get up. He was on the sofa for a while…Justice was sitting next to him. I remember that. I know Justice wanted to see him and thank him. I think the words were hard though and its not like it was very private. I know he was able to talk to him and hug him at some point and so that was good. He didn’t say much to anyone except “let me up”. There really wasn’t any meaningful conversation. His sister sat at his side for a long time, reminiscing about childhood. His cousin came and held his hand and he looked at her and said her name. He knew she was there. Pastor Chris came and visited…when he left he came and read scripture and prayed for him. Mark wanted to get up again and it was becoming harder and harder for him to do it on his own. I told Chris I think he wanted to hug you…and he did. He then sat back down.

I should have done this earlier…I’m not remembering details. I know that emotionally and mentally it was very hard. Everytime I would get him comfortable he would get back up. He kept reaching for his recliner button to raise and lower the bed. At one point (or many) I wished I had just kept the recliner in the house instead of the bed and then at least he would have felt at home and be able to raise and lower his head and feet at will. I don’t know how to explain it. It was draining. I didn’t know how I was going to do keep doing all of it. Administering medicine…assessing pain…making him comfortable… convincing him to just stay in bed (I was afraid he would fall) and getting him all shifted up in his bed only for him to ask to sit up again. It was non-stop and I thought this “comfort” at home was a load of crap. His feet were leaking. Since he had such fluid build up it had gotten to a point that his feet and legs were so swollen that it just ends up leaking out. Everytime he got out of bed or shifted too much I had to make sure his feet went back on the pads so his bed didn’t get all wet. I also struggled with the fact that his body needed dialysis but I was told to not do that and so I was withholding care from him. The biggest thing for me was that I felt like I was drugging him to death. The truth was…I was. I was drugging him to his death and that was really hard to handle. I didn’t want that responsiblity.

It was also really hot on Tuesday and our brilliant plan to not put AC in the house didn’t seem so brilliant. We insulated with foam and since we are surrounded by trees we figured it was stay pretty cool. However, the trees at this point did not have leaves yet and it got hot fast and we felt it. My brother in law ran and got an stand up unit for me and that helped to cool it down. I had three offers from people to stay over night with me but I turned them all down since I had three grown daughters and a grown son and really we needed alone time with him, even if he wasn’t really responding. By evening he could no longer pull himself up but that didn’t keep him from trying to grab the bars and making attempts. He still wasn’t comforable. I ended up calling Julie and having her come over. Cora and Aly stayed on the sofa and I made a spot on the end of the bed to sit. I think by 12am both Julie and I were concerned because he seemed like he was trying to talk but we couldn’t understand him anymore and he wanted to get up but couldn’t. He would get tired mid attempt and then we would have to get his feet back up onto the bed. I called the nurse and talked to her and she ended up coming out. She had to drive from Big Rapids and so it was an hour before she arrived. By then the attempt to talk was less but he was moaning and I didn’t know if he needed something or he was hurting. She went over the meds with me and we had to give max dosage every hour (plus breakthroughs) and it even seemed like it got to every 30 mins. Eventually she left and his moaning got quieter. They told me he got sick fast and that he would probably pass fast. I was grateful for that but also had hoped for something much more peaceful. I will never forget the moaning from him with every breath. The helplessness I felt along with the fear that the end was near all bundled together with frustration. I was finally able to lay down beside him. Julie assured me she would wake me for meds. She was a night owl. I recited the scripture I had memorized in the hospital into his ear….I told him he was an awesome husband and that I didn’t want him to go…but he had many great things waiting for him and he could.. I told him I’d be alright. I fell asleep talking to him and at 4am Julie woke me to give him meds. I layed right back down….and 10 mins later she woke me again and told me that he wasn’t breathing the same. I woke Aly and Cora so they could say goodbye and Julie got Felicity and Hatcher. I think he passed away by 4:15. I called Karson first and he arrived right away. Julie called hospice for me and that same poor nurse had to come back out. They do everything for you as far as contacting funeral home etc. I didn’t have to do anything. We all sat on the sofa in another session of awkward sadness and crying… waiting. When she arrived she delcared his time of death and then she needed me to help her undress and redress him so he was clean. The kids went downstairs to lay down. This is also not a part they tell you about and something you are not prepared to do, help dress your husband’s body. I did it because I needed to and it had to be done…but something I didn’t want to do and something that probably will just hang with you for a lifetime. She thanked me for helping but in my mind I was just still caring for him. The funeral home came quickly and he was taken from our home. Watching them cover him and take him away was very hard. It was all hard. At this point I contacted his sisters and my brothers and then decided to I really needed to sleep before I called my mom and his close friends. If people knew they would flood my house and I would never sleep. When I woke my phone was exploding with messages. This was very upsetting to me. I had not told anyone, nor did my kids. My mother found out on FB as well as many close friends. Social media can be very powerful in positives way…but also it can go the other way. Be sensative to peoples situations. I just did not handle it well and was not something I was prepared for. We did ask people to stay away for that day (in a nice way) so that we could just be alone. We needed to process the last 48 hours. It was a whirlwind and there were alot of emotions. Pastor Ken and Trevor did come…and that was okay. They were to the ones who put the general message out to everyone to give us space. Someone asked me how I managed to keep people away. I told them we just said “stay away”. I think that night Will and Emmy came to suppotr the kids…and their daughter was a joy to have at our house.

More food came…some friends stopped by…flowers came.

I really didn’t know what I was suppose to do next.

The following day we were at the funeral home and we starting knocking things off the list. Karson was a rock through this, helping me do what I needed to do. I wanted a good amount of time to plan Mark’s funeral becasue it was really important to me to make sure his life was represented well. By Friday I wrote the body of the obituary…also not something I was prepared to do but didn’t want a stranger doing it. They didn’t know him. The funeral home was really good to work with. They were so helpful and patient (we used McKinley in Newaygo which is not McKinley anymore but that’s how I know them)

We started going through photos and the kids started preparing what they were going to say. Mark and I had talked about funerals several times in our marriage and I knew he wanted someone to sing Be Thou My Vision a capella—and they had to be good. I guess when Hatcher was 12 years old, Mark asked him to sing it at his funeral. I was not going to put that on Hatcher but Hatcher said he wanted to and so it was.

His funeral was planned for May 17th.

Comments 3

  1. You have been through an ugly war, Dusty, and you served heroically. Mark could not have had a better advocate, nurse, friend, or wife. May the Father bring you to a place of peace and rest.

  2. I agree with what Jeff said. Thank you for walking us through it even if you did it for your memory.
    Praying for the Holy Spirit to minister to your grief and to help you know you didn’t fail Mark. Anything but. You think you were weak; you were a rock and advocated well for Mark.

  3. You are an amazing woman and so strong, I pray for you and your family as time heals. It’s a slow never ending process and I’m so sad for you all. God bless you and thank you for sharing, these are the things people don’t talk about that should be talked about. It helps heal wounds. Hugs. XO Kelly Lantzer

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