Just wrapped up an amazing weekend here at Casa de Sullivan. I'm struggling to express how blessed we are with some of the great family,friends and co-workers in our lives.
Our house has been transformed into a a place of deep love and warmth these past two days.
What a whirlwind of activity these few days...Howard Burkeen finished our ramp and bathroom projects last Tuesday,one Wednesday we officially entered hospice care and I took delivery of Lori's bed and then sprinted out to buy two mattress covers and sets of fitted sheets. I made it home in time to see Lori arrive by ambulance.
After getting her inside and making her comfortable...the hospice intake nurse and social worker came by for a chat. They told us all supplies will be provided by them from now on. We will have a aide come three times a week and a nurse will stop by once a week to change Lori's dressings on her port and g-tube. They will show me how to change the g-tube dressing this week.
The next chore was the house,it was not only cluttered but messy...and I had to learn a lesson here. Lori and I had the same goal in mind but different views on how to get there. I wanted to move things out of the house,to free up room so I can work better. I was getting frustrated because I felt all I was doing was moving one chair from one room into another. Lori was upset because she felt maybe I was trying to downsize before was she gone. That wasn't the case but taking a look back,I can understand her point. We are planning a big yard sale in June and everything going into garage was being sectioned off for the sale. I had to reassure her that I wasn't having a "fire sale",I only wanted to have room. She was feeling down when our friend Cheryl came over so I let the two talk while I started to build a shelving unit for our supplies.
I'm sharing this private moment because that is the nature of a serious illness,its not all harps and swelling music. Cancer takes a serious chunk of a unwary caretaker/giver's heart. You're watching your soulmate die very slowly and there is not a damn thing you can do...feeling her getting weaker,lighter each time you lift her up to change the sheets that are covered with waste,eating less,losing muscle mass...the hands that squeezed mine in joy at our wedding,now squeezing because of the pain. You as a caretaker have NO control,which is why you find yourself insisting that the easy chair go into the living room despite your spouse asking it be put in the dining room. Then realizing what does it matter,just shut up and do what she wants...because its also her only control as well. Talking to the social worker,we're very proud of us...we are as united and loving as a couple she has seen at such a young age handling this. A lot of couples don't make it...as the illness gets worse and the results become more evident of what is coming,many folks crack and break under the pressure of watching a loved die so slowly and painfully. It doesn't mean they are weak or don't love their spouse anymore,its almost a act of self-defense,to save your heart. I can promise you,that has never ever crossed my mind...the one thing I am working hard at in keeping my feet nailed to the ground because like I shared with brother,I don't want to stay here without Lori. But I know I will...I have a duty to keep her life and memory alive,of sharing with people just how an amazing spirit she has.
As Cheryl worked inside,Deb (Lori's best friend) and her boyfriend Michael showed up ready to help. Soon the house was a beehive of activity as we all cleaned,scrubbed,sorted and yes,moved out to the garage at Lori's direction,a lot of stuff.
I had to change Lori so she sent Cheryl on a grocery run...and then her brother Brian and his wife Brenda drove in. Deb and Michael went upstairs to work on getting the guest room ready,it was clean but the bed was full of clothes and hangers.As I changed and washed Lori,her brother standing aside just watching me (he could only me and not what I was doing). I got her dressed and comfy and went back to work. He said "How do you do it?" Its pretty easy actually...you do it out of love. There is nothing heroic or superhuman in taking care of someone you love...
Brenda brought a ton of food and started cooking as I went to get ready for work. Howard Burkeen came by and finished putting the final touches down on the ramp as well as take measurements for the small ramp on the doorwell in the front door.
Cheryl came back and for 45 minutes it was like a party,laughter,good food cooking,Derek being super friendly and furniture being moved.
Before I left,I had to go over the Meds list with Brian. Early Saturday morning before all the excitement and fun got started,we had a pain crisis that had me calling the on call hospice nurse. The problem is she can longer really sit in a chair or a couch..if she does,it can cause much pain and on Friday night she over did it.
The on call nurse came out and showed me what hospice intake had left in my fridge,a emergency "comfort kit" of which one of the items was liquid morphine. The nurse broke the seal and gave Lori 3 small doses of morphine. This settled her pain level down greatly and the nurse contacted the doctor who then authorized me to administer the morphine should the need arise again.
I explained this to Brian,on what to do and how to do it....he looked highly nervous. Once I went over it slowly,he was fine and off to work I went.
My work has been absolutely been awesome in dealing with me about this illness. As I mentioned,my manager is a cancer survivor,two ladies have lost their husbands to this monster and one left her alive when she went to bed only to dicover he had passed away during the night. One of the women who lost her husband,Linda,has really charged forward to arranging for cards to be sent to Lori,our head cashier,Pam,gave us a huge basket of personal items that we need but just don't have the time to get....soaps,dishwasher soap,toothbrushes,etc. When resources are thin,small things like that mean a huge difference. Other folks have started to help with drinks and dinners. Its so amazing....when good people hurt,its so easy to see what you can do to help..and more then once someone has said that since we have been kind people,this is God's way of helping us. That may be true but I rather have my wife back for another 30 years....
My co-workers struck again last night...I have only entrusted two folks with this blog from my work,Dianne and Susan. They know that Lori is now home and in hospice care this week. So when I checked in,people were amazed. "You don't need to be here" and "You need to be home"...I would like nothing more then to do that but I also have a duty to any company who employs me. We are so short staffed now and sadly,people tend to call off far too much still. When this happens,it affects our bottom line and puts crazy stress on those who have to pick up the freight. Up to recently,I had never missed a day until Lori's cancer got really bad. I am of that fact...I could care for my wife and still work to help pay our mountain of bills.
As I was at my station when two wonderful people got really upset that I had to be there...they called the manager on duty and insisted I be allowed to go home that night and one of them volunteered to do my work as well..So they basically "kicked" me home...I got to spend a quality night with my family as Lori dozed and we watched the Tigers play. Before I left,my new department head,a lady named Kathy,baked some of the best muffins I have ever ate. I shared them with my family for breakfast. What a wonderful gesture that was...
Sunday saw me back at work and this time I worked my shift training a new employee.
Got home and had lunch with Brian and Brenda. We talked about the yard sale and Lori said how she wanted to sell Comet but it needed some work. Brian decided that he would drive the car back to his place,get it fixed and sell it,he felt he would be to sell it more quickly then we could. His friend is a good mechanic and would be willing to help. I admit,I was pretty sad seeing her car leave...just another symbol of her not being with me...but with hospice costing 5,000.00,we need the help...isn't it something that dying costs so damn much in this country?
Lori got a beautiful card from the lovely actress/talk radio hostess/author Lisa Ann Walter over the weekend. Lori remembered her from "Shall We Dance?" which she had seen in New York with Deb. But since Brian and Brenda didn't know her,we found "Bruce Almighty" on cable and watched it. Brian commented on how beautiful she is and asked how did she know us. Well.....that is a story that I have shared before in this blog so if you want to know....but Lisa Ann,thank you so very much.
Its now 7:25 pm on Monday night
Lori is resting easy,her team from Lane Bryant have come by the last two days for great visits. It has really perked her up...we had hoped to go on a outing but just quite aren't ready as of yet. But we are going to try and get her using a walker as soon as I post this. So off I go....
Thank you all so very much for your kind words,thoughts and deeds. It has made our journey that much more meaningful. To those of you who know us in real life,please reach out and contact us,its okay..we would love to see you.