Things have changed a lot for us and it's happened pretty suddenly. Michael's tumor has begun growing again and is now in the temporal and frontal lobes. He has a catheter (because of incontinence combined with a frightfully unsteady gait and weakness). Since then (8/20), he's gotten so weak that he is in a wheelchair all the time, unless he's in bed or in a chair. Steps are out of the question. He needs help with just about everything, except that he still feeds himself.
He had a grand mal seizure on Friday, so now he's on anti-seizure medicine. His blood sugar was very high, so now I test his sugars and give him insulin shots. That's from the steroid that he takes to keep his brain swelling down.
His spirits are good, but he can't communicate on his own very well. He does well with yes/no questions. He still enjoys things (like when we went to the Indy Zoo today!) but then can't tell what we did. He sleeps from 8 at night till 9 in the morning, and then naps in the afternoon.
Caring for him is easy and fun, since I love him so. He is quite well-mannered, cooperative, and sweet, just as he always has been. :)
We decided not to proceed with further treatment and to let Hospice into our lives. They come 3x a week to bathe him, and we have other visits too. They are going to be a very good thing for us, and enable me to keep him at home, rather than having to put him someplace else.
Michael won't be returning to Tucson. It would just be too scary for me to try to take him now, because there is just too much of a risk that he would die on the trip, and I would much rather he die here than in Oklahoma or something. I will go when I can, when he dies and I'm ready to travel.
I wish that I had cheerier news, but .. that's what's going on.
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Janee there is no way to think of today's trip as other then 'AWESOME & INCREDIBLE.'
ReplyDeleteBest Wishes,
Patsy & Jim
Janee, I have come to see the two of you as strong and fortunate, and an inspiration in the truest sense of the term. Don't forget to take care of yourself, too. May Got bless you both as Michael goes on the ultimate journey.
ReplyDeleteLynell
Hi Janee!
ReplyDeleteDon't let the wheel chair slow the two of you down.
When my mother was alive, one of the things I would do is wheel her to bingo and she loved it. Granted, she wasn't capable of keeping up with her cards and of course it didn't matter. What mattered was that she was happy just being there.
Bonnie
Sis:
ReplyDeleteGlad you are posting some in the journal. We love you. I might come down this weekend for a little visit if you are up for it. Probably on Saturday...won't stay long, just a visit. :-* I think that is a kiss...that is what it was supposed to be. Give M a hug from us. Love, Sis.
Each time I read your journal, I share your entry with Bob. We think of both you and Michael frequently. I cannot begin to explain how amazing we find you both. Take care of yourself as much as you can, Janee.
ReplyDeleteAnne
Janee, you continue to inspire us with your strength, dedication and love. Your journal has been a gift to all of us who care about you and Michael. Thank you.
ReplyDeleteThe offer to bring in dinner is still open.
Kathryn and Dan
Janee, I felt I had to leave a comment. Sitting here with tears rolling down my cheeks. I only 'know' you from your PS tutorials but you have opened up a new door in my life.
ReplyDeleteThe way your are coping is amazing, your finest hour. Your love comes across so strong, we all love you in return.
Remember the hospice people are there to help you as well as Michael. Let them share the weight on your shoulders.
Love to you both.
God bless.
Mick (Dusty)
Janee,
ReplyDeleteI may be the oddball in this saddened, inspired crowd, since I learned of you through Michael, as a long-time patient of his, instead of the other way around. He is an extraordinary doctor, “well-mannered, cooperative, and sweet,” (as you describe him now) and also funny, collegial, thorough, and thoughtful. He managed, in the course of a medical appointment, to tell delightful stories about the poodles, about Maddy's milestones, about amusing things you said. His love for you and his pride in your accomplishments lit up his face . . . and during all this, he never lost his medical focus or failed to respond completely to any health question. His patients will not find his equal in this lifetime, but how fortunate we all have been.
Blessings,
Janie the 'blader
I don't know anything about your faith, but I read your posts and see a lot of faith in your love for your husband. It is an insperation to all of us. I will remember you both in my prayers for a peaceful death and continued strenght for you. Hospice is the greatest thing they have going now for those in your situation.
ReplyDeleteA fellow FHTV resident Arlene
I am sorry you are going through this but I can honestly say I know exactly how you feel and will feel through the coming days and months.
ReplyDeleteI was 20 when I met Keith. He and I were unseparable and I loved being with him....brain tumor and all. He was in remission when we met and I hoped and prayed the cancer wouldn't return........but it did two years after we met. AFter that, we(he) battled the chemo, radiation and all the side effects that come with it. My heart aches to this day--11 years later.
As I look back, my experience has helped me become the woman I am today.
May God bless you and the days to come.