Many people ask us if our Mom gets a chance to rest and get away. She has help 5 or 6 nights a week so she can sleep, and twice a week she gets away for 4 hours to run errands and attend events. This weekend she is gone up north for 3 three days with Gerrit, Sarah and the kids. Sarah and I are taking care of things at home while she is gone. We are hoping she has a wonderful weekend even though its cool, and that she can be refreshed and relaxed for a few days. She works so hard and so faithfully taking care of Dad. The next two weeks will mark 2 milestones for the family. On August 20th, Mom and Dad share their 38th wedding anniversary, and on August 28th Mom will celebrate her 60th birthday!
As I look around the house I see so much evidence of the continued love and support of my parents' friends, family and church community. There is a casserole on the stove from a niece who faitfhullly brings meals and comes weekly to do physio exercises on Dad.
There is a book and a printed email on a table that a retired Pastor and his wife dropped off to encourage my parents. Every week several people drop by for a coffee and a chat. Since Dad can not talk any more, the house can be very quiet and Mom really enjoys these visits.
There is a beautiful card propped up on the dining table with a sweet reminder that they are not alone on this journey...
I found Mom's notes of what her regular visitors take in their coffee so she doesnt have to ask every time how they take it :)
Some leftover pulled pork and buns from a pig roast that Mom couldn't attend. She was not forgotten though...
McDonalds coffee cards, from all the coffees a brother-in-law and sister drop off!
Some new plants to brighten up an area, that faithful friends maintain every week when they come for a visit.
The shower installed by a loving team, is used every day and so convienient.
A comfy sheep skin, given by someone who also had a loved one with ALS and found this helpful.
The bird feeder, hung and maintained by my uncle... provides something to look at; life on display right by Dads chair. The grandkids love it too! The middle one often has gold finches on it.
This is how we communicate with Dad now that he can no longer use his head controlled computer. We point to the row (yellow) first , he blinks if the letter is in that row, then we go across the blue and he blinks when he wants to select that letter. We spell out each word letter by letter - it works, but its slow and frustrating. Conversations with Dad are now usually 1-3 words long. This is the hardest part of the disease without question.
This is the feeding system used for Dad. He gets 2 cans of meal replacement in the clear bag, followed by a bag of water, twice a day. Its takes 1-2 hours to complete a feed. The food goes directly into a port in his stomach, as well as his meds which can be injected with a large plastic syringe into that port.
Have a wonderful weekend,
love Joni and family