Mark's ILLNESS

Here is my youngest daughter and my son. They came by on Friday night to see their Dad. Mark cannot hardly see now and so he keeps his eyes closed because he said he feels like he is in a fog when he opens them. He is still pretty funny and can remember things we can't! It is amazing.

So I have kept a journal of sorts on Facebook to share what is going on with my husband and our walk through Glioblastoma or brain cancer (always fatal) I know some of you have asked to see some of my days and so I am putting from of the posts here.
The post below is what happened today Friday April 25,2014

The doorbell ran at 7:45 today and I was off and running (the lawn kid was here to mow) . Grabbed my clothes, ran a brush through my hair, took out the garbage etc.

Cleaned and picked up, washed the checked on Mark again and went back to putting laundry in and folding the clean stuff. 

Nine o'clock hit and Mike came (he usually brings breakfast for Mark on Fridays). This Friday was different because our friend Craig Goodwin came to baptise Mark (adult). Mark was worried about not having an adult baptism so Craig baptised him with Mike, Shelbi, Janelle (daughter in law) and me watching. Since Mark was afraid when he had the dream about the church not letting him in, Craig addressed this and was loving and patient and compassionate. 

I quickly grabbed some colors catchers and threw the beautiful car quilt in the wash with a couple of prayers to go along with it. It came out lovely and clean and I folded it until Mark had clean bedding again.
Right after this happened, Edith, the Hospice bath lady came. WHAT an angel! She shaved Mark first, then bathed him, then changed the bedding and showed us how to do all of this. It was wonderful because she was so kind to him and so wonderful to us in showing us what to do.

Last night I was trying to change him and it was a comedy if it wasn't so sad. Mark who can barely move was trying to help me because he could see I wasn't doing it right. I told him I was sorry and that I did a good job with "our babies". Last night he had dreams of someone stealing his p-nuts and I told him it was the squirrels in the backyard and I was going down to buy more...he was more relaxed then. Then came a dream about some contract. I ended up giving him some medicine and he was ok then. Phew.
So Edith left and then Mark's Mother came to visit and stayed in the bedroom with him for about an hour. She said to me "call me when he is awake and I will come back. I smiled to myself because if I did that he would be asleep by the time she got here. He is awake very little and it is the kids that can get him to open his eyes and share.. Janelle baked cookies and cleaned up and then left. 

Then Nurse Cathy came and we talked about Mark'status and she shared how her son age 14 was killed. I cried. It felt good though her story was so tragic. I gave thanks I did not have to go through anything like this with our kids. NO wonder she is so wonderful as a Hospice nurse!

Cathy left and then all three of my kids showed up and sat around Mark. Jason fed him and Mark had a trip to Seattle planned for everyone to see his brother Rich in Seattle. They planned a golf trip and Mark said he would drive the cart. It was fun hearing them laugh and plan. Mark promptly shut his eyes again and fell back asleep. The kids went upstairs and talked about the day and how much we all love Mark and how funny he still can be. He had us all laughing. It is a sad/happy time. Mark has one foot in heaven and one foot in our bedroom. We are loving this final time we can all be together. Life is good and God has certainly blessed us.

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YESTERDAY 4/24

Mary Lou Donahue Weidman

Yesterday

A new day and a new experience. Well, last night I was up most of the night with Mark has he was agitated and still having his fitful dreams. He settle down this morning as I had to get up for the day. Mark's sister came over and I could barely get him to wake up for breakfast and I basically just MADE him wake up. I had oatmeal and fruit and cinnamon rolls (costco I am sorry to say, not homemade). Lindsay helped him eat as today he did not do well with a fork or a spoon. He is weaker still. After breakfast we realized he was wet so I got Lindsay and his friend Steve who came to visit ) out of the room as Mark is embarrased. I tried to stand him up (lifting 170 pounds. and tried to get him to stand....so hard and not much luck. I did get his under[ants off and some wipes to clean him. Then I tried sitting him down and got the t-shirt off which was wet in the back. If it was so sad it was a comedy sketch. He was slumped over and I could not lift him back into place and I needed him off the bed to change it. I called for Steve and he helped. I am sure he was surprised at how hard it is to move him as it is dead weight when he cannot help you in any way. We got Mark into the wheel chair and then I got the bedding and his sister wiped down the mattress and offered to take the BIG bedding home to wash. I got clean sheets and got the bottom sheet on and Steve helped get him back in bed and he did alot of lifting and shifting and re-positioning. PHEW. Steve prompty left to go and do errands and I am sure was surprised at the change in his friend. Lindsay and I chatted and then it was time to take more pills downstairs to Mark and he would not open his eyes and was half asleep. I talked to him and pushed the two pills in with a little piece of cinnamon roll as a chaser. He loves those and it works.
He slept HARD until about 20 minutes ago when Jason came to see him. Jason is helping him eat and soon I will give him three pills and see how he does tonight. I am praying he does well so I can get some sleep. Tomorrow morning Edith the shower lady comes to bathe him...hooray! The nurse said the time is coming closer and to be prepared...can one ever be prepared? I will be surprised at the moment he passes because that just seems what we would do...don't you think? Hugging him, washing his face, talking about God's love and making him feel comfortable makes me feel better. I remember someone said to me once "would you rather have your feet washed or wash someone's feet?" I clearly like washing his feet and am thankful it wasn't the other way around. I do feel fortunate. Love you friend.

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Day before yesterday- 4/23
I have already learned so much from Hospice and tonight Mark has had horrible nightmares that made him cry out to me. He said the church will not let him come in. I guess it is worry about something he doesn't need to worry about. But he has cried the last three times this evening. So sad. I finally got some lorasepan out of the Hospice kit, called them and asked to give it to him. I gave him half of it and he calmed down and then I gave him half of a "peacock" cookie and he was so sweet. I told him that God was right there in the room with us and holding his hand even if he didn't feel it. His eyes were closed and he gave a gentle smile and went to sleep. I hope that is it until he needs the bathroom. It is so hard to see the daily changes and when someone worries about God's love for us. It made me so sad. I said "God loves you inifinitely more than we will ever know and He would always let you in the church, you know that. He looked so relieved. This disease takes even the most beautiful things in our lives and changes them. It makes my heart more fond of him than ever and it reminds me of when my son was so ill and needed extra love, prayers said out loud and a cookie. We really don't change that much as we get older. LOVE is the key.
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I have been writing this journal for quite awhile and if you would like to see all of it you can join me as a friend on Facebook- 
Mary Lou Donahue Weidman
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Thank you dear friends who have sent prayers, cards, post cards, letters, money and LOVE...I consider myself the luckiest quilter in the world today and thank God for YOU.