This is dementia. It's not just a memory problem.
What you read in this blog is purely my own personal experience in dealing with Lewy Body Dementia every day.

This is not meant to offer any medical or legal advise.
I have no professional training in care giving or experiences in formal writing.
I'm just a woman that loves her husband deeply and wants to provide him with the best quality of life he can and chooses to have.
My prayer though this is "Lord, What am I learning from this; how can I use it help someone else and to glorify You?"
If just one person finds comfort in this public blog. I will feel like it was a success.

Thursday, January 30, 2014

Respite, the acquired acceptance

Respite is something I had to learn to do. I know that sounds funny but it's true.

Respite #3 was excitedly anticipated. I had made a heart connection to the people from an on line support group at. I wanted so much to meet them and this was my chance to do so.
You know, taking a cruise hasn't really been on my “things to do” list. I don't like to ride in boats and this body doesn't like to swim. But I figured I could suck it up about the boat and avoid the water by choice so I never gave it too much more thought and stayed focused on meeting my friends.

When that day finally arrived all I can say is that my cup of joy runneth over!! Squeals of joy escaped my mouth when my caregiver “sister” Trish, who blogs about caregiving for her brother at Robert's Sister, rounded the corner and we made that personal connection! Then one by one or two by two, caregivers were added to our joyful union and quite frankly I am surprised we weren't asked to tone it down or go to our rooms.
In hind site there may have been a suggestion to do just that when the waitress spilled water on me removing my focus from the group and the group and I stopped laughing all of maybe 5 seconds. (snicker) That was Nov, this is Jan I'm just now getting the hint. The entire experience seemed surreal to me in the best possible way.

There are challenges that come with respite.
First your head and heart need to work together to do it. Even if you can get your heart on board for a little while, that's so much better than nothing.
I've said before, there is nobody, nobody at all, even if you had a twin, that will care for your loved one the way you do. From personal attention to throwing away the trash. It just wont happen and I had to accept that. Since this was my third respite I found it much easier to accept, so after making all the arrangements for Hubby's care, I left feeling confidant I had done everything I could, now it was up to the others to fullfill their part.

Respite one I stayed close to home and the phone in case I was needed, I called every day to check on Hubby. You can read the daily blogs about that here.

Respite two ,I took 2 weeks away, I called all but 2 days this time.

And Respite three would find me in the middle of the ocean with limited contact and no way to get off a ship. I did buy an international calling plan for the travel with strict instructions to my my family that I was only to be contacted in emergency and I would call as I could. I had faith in what I had set up for Hubby's care and I stepped out on it.

And it was tested.

Our first night out at sea, my phone alerts me! I had a missed call? WHAT?!!! Don't panic, Kathy!
Then I immediately got a text message from oldest daughter explaining that Hubby had a very anxious day, had gotten upset and anxiety meds were going to be ordered for him. All was well but she wanted me to know because even though she was listed as contact, the Respite facility told her they tried to call me first. For a while my brain was in overdrive. Praying, praying, praying without ceasing. The situation was completely out of my hands and I knew there was nothing I could physically do. I had a choice though, I could continue to have faith that Hubby's needs were being met by the team I put in place and finish my respite OR I could fall apart and dwell on the fact I couldn't be there while Hubby's needs were being met by the team I put in place and finish the respite. No matter what I chose, I couldn't leave where I was so I went for option 1. And I am so glad I did.

So much has happened here lately that I don't have time to go into all the details other than to say I had a glorious time but the BEST time, was in the evenings, sitting around the dinner table with my friends, the people whom “get it”, laughing so hard there were, tears, snorts, spewing beverages, hurting sides and stomachs (I'm sure that part had nothing to do with the 3 desserts that were ordered by one caregiver but I wont mention any namesrichard as to not embarrass anyone) .

I can't imagine another respite without this group of people and the addition of those that didn't get to come but made it a point to meet up and say bon voyage. I would happily travel anywhere with them!

1 comment:

  1. You are the Bravest, sweetest, beautiful,giving woman I know!!!!!
    Marsha (heart sister)


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