Tuesday, January 3, 2017

Happy New Year?

I don't know about you, but the last two weeks have been trying. For the record, I love my husband. The knowledge that I am losing him in the near future will never extinguish that love. The responsibilities that I've taken on to ensure that my husband gets through each day will not interfere with that vow of love I gave my husband.

That said, I can honestly say that ALS sucks. It has been a rough two weeks for me,

I'm sleep-deprived and depressed and angry at our situation. It started when Bill caught my cold. His days and nights were filled with "phlegm" issues. During this time, we were up at all hours of the night, several times a night. His swallowing was affected as well, and worsened as the weeks went on. I was afraid he would have to be rushed to ER to help him breathe as well as put the feeding tube in STAT. He could no longer swallow his pills, and I ended up emailing his doctors and calling the 24/7 nurse. It was a sleepless time.

Once the cold was gone, his eating and sleeping improved, but the amount of time I spend getting things for him, driving him to appointments, taking his calls, crushing his pills, helping him from here to there - It seems that I just don't have time for me. Since he can no longer take care of the dog by himself, my daughter and I can never go out together. I am the designated driver, of course, but Bill rarely goes out now.
To put icing on the cake, the contractors aren't finished yet.
Our house is being worked on to make it handicap-accessible. While we now have a working bathroom, the bedrooms are still off limits. We're waiting on flooring. I am getting mighty tired of sleeping on the basement floor on an air mattress. On bad nights I sleep on it upstairs in the living room to be closer to where Bill is sleeping. He has the only bed in the house at this time so he can sleep propped up. He also has a BiPAP machine to help his breathing while sleeping. It's like a CPAP for people with apnea, but it not only pushes the air in, it pulls it out. 

I feel like I'm hanging onto an inner tube in the middle of the ocean.
I'm just floating along, waiting for a boat (finished construction) to rescue me. My life is on hold for now.
This may be what you are or have been going through yourself. So I know I can vent and it won't make you think less of me (at least it shouldn't). It may be whining, but it's whining without losing the commitment to "love, honor and cherish through sickness and in health."
So there, I've typed what I can manage to put into words. I do feel a little better, and in an hour or so I'm taking Bill out to watch a movie. My only regret is that all three of us can't go because someone has to stay home with Wilson. 
But I'll take what I can get. Thanks for "listening." Spouses and family members who are playing the role of caretakers, hang in there. 
Take it day by day. 
Meditate, do yoga or tai chi, or just plain take a deep breath. 
Check out your local park district or community college. 
Google Yoga routines, Tai Chi routines, Meditation and it will take you to videos you can follow at home. I've linked a sample of each.
Call for backup. Another family member. a friend (yours or your loved one's), a home health aide.  
Find a hobby or activity, like knitting, scrapbooking or water colors, and give yourself time each week to focus on what you're doing. Focusing on these activities keeps you from angsting over the road ahead of you. I like to create cards, canvases and altered art. My crafting blog helps me destress, although with the construction my craft room has become an overstuffed closet.
Take care of yourself so that you can take care of him or her. Your health is essential to his.
Finally, grab those moments when life is smiling at you and spend time with your loved one since that time is limited. 
Going to the movies now! Namaste!

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