I'm scared of the consequences, but I am literally option-less in this case.
Sunday was better. Our friend Andy ended up coming and staying Sat night with us, which honestly even made *me* sleep better. I just felt I could relax a bit more knowing there was someone else in the house if Wash got up to trouble, or sleepwalking or some such. Thankfully for us all, he did not. Slept through the night just fine.
I made the boys breakfast on Sunday and after Andy left, one of the Hospice Volunteers came over for a few afternoon hours with Wash. They played some games or watched a movie, I can't even recall. We had SR come by after the HV left and my (step)dad came to take me out of the house for about an hour, to do an errand and just breathe. I needed it. I have not had but about one chance for a 10 min cry so since this whole thing started. And it's some emotionally heavy shit. Wash hates seeing me cry though, he can't understand anymore and just sees me in pain, and usually draws the conclusion he caused the hurt. So he feels bad too! Horrid cycle! So, I try not to cry around him.
We had enough time in the evening for a nap for him and a shower for me, then we gussied ourselves up for our Mad Men ses 5 party. Which rocked. I cannot wait to complete my new BINGO charts for next week.
Unfortunately, this means I cannot 'bother' him about the Urn right now. He needs a little time away from his thoughts this weekend and the idea of his own end.
It's hard to keep him distracted, try to keep him cheered and happy, to convince him to just keep living. It's selfish, I'm personally not ready for him to die. I have to hope at some point I will be, I'll be able to make peace with it, but not right now. Now, he still has life left in him, just sadly some very bad days too.
Monday we had the Hospice parade through, nurses, social workers, our Chaplain. Poor Wash! I think he was much more tired than he let on, or else his steroids might be bothering him. He's still asleep this morning, 35 minutes so far that I've been able to write and work on my own. I'll have to check him soon, make sure he's breathing ok.
I have so many fears, so many anxieties. I worry for my own future, is it coming at the price of his? Am I hurting myself very very badly over long term for staying, for putting his needs first, for being public?
I get so scared.
I need to hear good news today, or else have a lack of bad news. My husband is 27 years old and dying. I'm his only caregiver, and fulltime to boot. I have to do what is right and best for him, and I will have to face my own consequences.
I wish it did not have to be this complicated or painful. Being an "Adult" is not easy.
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Aye, not easy at all. Thinking of you both. Tashi, I'm glad you're getting even small breaks, though I wish you had more, and it helps me a lot to read what you're writing. I have a friend who has brain cancer, and it can be so confusing, for everyone involved. You are both big damn heroes.
ReplyDeleteTashi--you don't know me; I found you through Head Nurse and have been following your and Wash's story. I just want to chime in today: there is nothing easy or simple about what you are going through. You already know that, but I want you to hear from someone truly 'outside' of your situation that it makes sense that you're feeling everything you are. I am so glad you have hospice support; they are wonderful.
ReplyDeleteFor what it's worth, there are many of us out here thinking of you and holding you in the light. All my best, Kim
Hi Tashi,
ReplyDeleteThis came to mind as I was reading. Just wanted to share some peaceful words. Hope you have a peaceful week. Keeping you both in my prayers. -- @BohoBear
(from http://www.cyberhymnal.org/htm/i/t/i/itiswell.htm)
It Is Well, by Horatio G. Spafford, 1873. This hymn was written after two major traumas in Spafford’s life. The first was the great Chicago Fire of October 1871, which ruined him financially (he had been a wealthy businessman). Shortly after, while crossing the Atlantic, all four of Spafford’s daughters died in a collision with another ship. Spafford’s wife Anna survived and sent him the now famous telegram, “Saved alone.” Several weeks later, as Spafford’s own ship passed near the spot where his daughters died, the Holy Spirit inspired these words. They speak to the eternal hope that all believers have, no matter what pain and grief befall them on earth.
When peace, like a river, attendeth my way,
When sorrows like sea billows roll;
Whatever my lot, Thou has taught me to say,
It is well, it is well, with my soul.
It is well, with my soul,
It is well, with my soul,
It is well, it is well, with my soul.
Though Satan should buffet, though trials should come,
Let this blest assurance control,
That Christ has regarded my helpless estate,
And hath shed His own blood for my soul.
My sin, oh, the bliss of this glorious thought!
My sin, not in part but the whole,
Is nailed to the cross, and I bear it no more,
Praise the Lord, praise the Lord, O my soul!
For me, be it Christ, be it Christ hence to live:
If Jordan above me shall roll,
No pang shall be mine, for in death as in life
Thou wilt whisper Thy peace to my soul.
But, Lord, ‘tis for Thee, for Thy coming we wait,
The sky, not the grave, is our goal;
Oh trump of the angel! Oh voice of the Lord!
Blessèd hope, blessèd rest of my soul!
And Lord, haste the day when my faith shall be sight,
The clouds be rolled back as a scroll;
The trump shall resound, and the Lord shall descend,
Even so, it is well with my soul.
You are doing everything that can be done. You will never have to look back with regret. Never allow yourself to forget how much you give, and how amazing your marriage is. You two are closer than almost anyone else could ever be, and it is thanks to your love and generosity.
ReplyDeleteBut you must also take care of yourself. What would it require to give yourself a regular time out? Do you know what you would want to do? Be alone? Sleep? Take a restful walk? Hang out with friends or family?
If you know of a way to find time for you, is there a way you can communicate that? I hesitate to put my email address here, but would be pleased to communicate with you & try to figure out ways we could help. Should I just mail a note to your PO Box?
Hi Tashi, another stranger. I'm out here in Canada tweeting & doing my best to share your story, get your message & raise funds for you as best I can. I lost both parents to Cancer. I was my mom's primary caregiver 24/7 with no respite. She didn't have brain cancer, but she did have demyelination - fun for a while when we'd have to search to find the teapot in the freezer, but very troublesome as time went on. I know what it did to me as time went on, so although I worry about Wash's plight, I'm also very worried about you. It sounds like you've got a great family & friends network in person around you, but please remember to eat, sleep, shower, breathe & all of those basic things most people take for granted whenever you get a minute, ok? I was the queen of the 2 minute shower at 3am every 3 days! Please stay conscious of your own needs so that you can stay strong for him. You want to be 'present' every moment with him right now, ya know? *hugs* Jacquie aka Jezziebezzie
ReplyDelete