This is My First Post

Christina

This is My First Post

Christina
(Editor's Note: Today we welcome a new blogger, Christina, who cares for her husband. You can connect with her on her profile page: @doug1234.)

tree-219714_640Things are changing. Infusions every week, shower chair and Doug often needs help showering, walking with a cane for balance. He is very weak. Sleeps all day most days. A good day is when he is able to let someone take him to his doctor appointments.

This week we received an oxygen concentrator for the house. I'm beyond trying to get him to eat healthy. He won't eat anything I cook. Just no appetite. Strawberry pies and chocolate milkshakes from McDonald's are all he eats. I figure it's calories. At this point let him eat whatever he will. He's only 52. This week I received a hospice ad in the mail. I wasn't ready for that.

We are going on a bus tour this week. There will be lots of walking in the heat. I know he will not be able to do this but he is trying to take all these trips with me all of a sudden. He wants to go river rafting. He is in no shape for rafting.

I believe I'm in stage 2 of the stages list. I have no one in which to talk to. Dysautonomia is rare. But, I figure here we all share the process.

In 1995 he was told he had 8 to 10 years to live. I just recently found this out. Borrowed time.

He can feed himself and potty just fine. He even tries to help around the house a little.

That's all for now.

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Christina

The only backup plan we have is calling a taxi. It will slow down the group if Doug wants me to stay with them. If we do the taxi, I will go with him. Likely we will find ourselves sitting on a hot bus. I just hope there is an immediate care facility in the area. He seems excited, but, he is running a fever. He hasn't begun to get packed.

Denise

Hi Christina! I am so glad you started blogging! It's a great way to talk out what's going on. And, no matter what's going on, we're here to listen and support.\r\n\r\nSo many changes and so many bring heartache. When do you have a chance to cry and let it out?\r\n\r\nI hope the bus tour goes okay. Can you both discuss a back-up plan just in case it becomes too much for Doug?\r\n\r\nPlease keep us posted on how you're doing. We're always here. :)