Monday, January 6, 2014

Day 37 of Home Hospice...Live, Love & Learning

Two weeks ago Dad decided he couldn't safely drive any longer because of his waves of fatigue. Today he finally came to the conclusion that he could not live independently. My Dad is a very proud man and each of these steps of lost independence have been so very difficult for him and a sad realization for Dad's time on earth is coming to an end.  As his children we had come to these conclusions much earlier than him but I wait for him to choose to talk about them.  With the help of my siblings we have created Dad's home hospice which is what is keeping him in his home, warm, safe and as comfortable as possible. I have given up working to live with my Dad from Sunday to Friday, Friday through Sunday afternoon is handled by my siblings to give me a much needed break.

Today as I watched Dad move in what seemed to be slow motion, so unlike the man I remember...I knew in my heart that it is another step in his declining condition.  He slept a lot today as he now does most days and we are again struggling with bodily systems that seem to be slowing down or stopping.  Sometimes he has a blank look on his face and other times he walks to the bathroom or kitchen and then just seems to get stuck in time...he just stands there looking at the room...maybe not sure what he wanted or just too tired to go any further.  After a while...he begins to move again but he is often frustrated or flushed. Taking a shower today again seemed to fatigue him.  Still the hardest times are when he comes to the conclusion about his decline like he did today. It is like watching the life drain out of him as he discusses these things with me.

He still perks up and talks at times for short periods or will watch a show until his head begins to drop again. To add to all of this we had a water main break in front of the house in these frigid conditions. The first one was on Sunday and we did not get water until later in the day.  The third and fourth was on Monday and we have been told that if we have another one they will have to bring in a special crew to dig up the road and replace the whole system and we would be without water for days.  Trying to look at our options if this becomes a reality. I have filled up buckets and the bathtub just in case...but with Dad continuing to decline I will also talk to the hospice nurse to see if hospice would provide temporary housing and care for Dad until we have water again.

Because Dad is sleeping so much I'm trying to distract myself by reading the Bible, books from Danielle, Facebook and focusing on my families needs.  Today I made yearly physical appointments for Jeff and I, vision appointments for Ben, Danielle, Jeff and I, dentist appt. for Ben, yearly appts. for me and coordinated the hip x-ray orders from Baltimore Sam will need done while he is under sedation for dental work in March. I then decided to research a vehicle that would accomodate Sam's scooter and required lift.

And yet with all the scheduling and water main drama I still found it hard to keep my mind distracted. I did feel relieved when I watched the TV and saw quite a few commercials about nursing home abuse and knew that at least my Dad wasn't experiencing that.  Thanks to my God given sarcastic sense of humor I am getting through.  Yes, even some things about home hospice can make you chuckle.  I know this concept is hard for some people...I first encountered this as I became friends with other parents of children with special needs...some like me could laugh about things that our children said or did and others would just cry...I think it is a coping mechanism and I am thankful for it.  I also think that it is an accetance of our child for the person they are and not the person we were hoping they would be.  And that got me thinking...what happened to taking care of our elderly or disabled...when did putting people in nursing homes become the standard procedure.  For me...this has been yet another character building experience, defining my belief that every person is worth caring for and deserves loving treatment from family.  I know some will debate that they have to because of work and circumstances...and I'm sure that is true for some...but how many just decide to take the easier route.  I recently read an interesting article that I will share a link to here:

Take the time to read the article and think about it.  I especially like the last paragraph:

This is why traditional cultures value even the most fragile, disoriented elder, why the Navajo carry "Grandmother's bones" with such reverent attention. Even as you grapple with the logistical and psychological stress of eldercare, there will be moments when you find yourself on the "blessing path." Rather than a long day's journey into night, you'll feel yourself making a long night's journey into day: through fear and confusion to courage and wisdom. Receive this gift, the final one your parents can offer before they take off their shoes, jump out the window, and fly home.

1 comment:

  1. It is good to remember the last line - Death is peaceful for your Dad. But it still hurts for the people missing him. Sue, I am so sorry for your loss. Jeanne