When we saw the ALS doctor at the first of Jan, he said now is the time to begin Hospice. There is no time frame except that we know it is short, whether that be three – six months or a year. So, on January 24th we signed papers to begin Jon on Hospice. It was just six days short of a year from hearing those words in the doctors office “I think you have ALS”, and Feb 14th marks the one year confirmation of his diagnosis. Jon has signed DNR and DNI papers (Do Not Resuscitate and Do Not Intubate) and now sports a silver bracelet to identify his wishes.
Talking and starting Hospice was very emotional for both of us. Hospice heightened the sense of finality. It makes things even “more real”. It’s been a struggle to adapt to a new normal. We now have a flow of traffic in and out of our home on a consistent basis. The aid to help give Jon additional showers, the nurse, the Chaplin, and the social worker. The massage therapist who comes to work on Jon’s arms and legs to help try and alleviate some of the pain and cramps. Then there’s the respiratory therapist that comes monthly to check on the machines and bring supplies. I have forgotten what it feels like for life to “be normal”. We just keep adapting to the new things this disease brings with it.
When you are living with someone you love that is dying, it changes so much of you. Your senses become heightened, listening to every cough and sound your loved one makes when you are in another room. Making sure that sound is not something in need of emergency care. Checking on them every time their sleeping; watching their chest to see if it’s rising and falling, praying that life isn’t gone yet. Watching their physical body failing at things that were once so easy. Trying not to feel guilty that you so easily can still do those things. Battling your thoughts and trying to take one day at a time. Not dwelling on the fact that someday soon you’ll be a widow. Daily reigning in the fears and uncertainties of your future. Then there is that struggle of feeling so alone.
I can’t imagine how people deal with things like this without Christ. It’s through verses of His scripture, Christian songs, and encouragement of His people that I am able to press on. Knowing that God has a purpose and a plan. There are days that I questioned that, but I KNOW deep in my heart that He is good, that He is working on me, that He has a special plan for my life. Like every believer, I struggle, I fail, I sin, I miss the mark of what He wants me to be. But, Philippians 3:13-14 tells me to “forget those things which are behind and reach forth unto those things which are before, I PRESS toward the mark for the prize of the high calling of God in Christ Jesus“. And I put my trust in Jeremiah 29:11 “For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.”
God is working in both of us. We travel this journey together knowing that God will use both of us in different ways. Be encouraged today dear Christian. No matter what YOU are going through, God IS working His perfect plan for your life. No matter how you can’t see it, think you don’t deserve it, or don’t believe it. JUST PRESS ON!!!