Progression

This is a nasty disease.  It just plain sucks.  We are progressing into a not-so-very-fun stage.

When this disease began we thought, Well Les is slurring his words a bit - we can handle that!  When he could barely talk we thought, Well, he can still talk with texting and we can understand some words.  At least he is mobile and very active!

When he had his first trach surgery we thought, Well at least he is mobile and he can talk with texting.  He was pretty miserable because he couldn't eat, but he was mobile and active!

After his second surgery which removed his larynx, we were so thankful he could eat a bit again!  He was mobile and could talk with texting.  He started losing a bit of strength in his right hand and left leg, but otherwise was doing good physically.  He could still give himself his meds and was walking!

When Les started using a walker we thought, Well he can still get around.  He can get in and out of the car, he can get himself to bed, he can get himself on the toilet.  And he could still talk with texting!

When Les couldn't walk anymore or use his right hand at all we thought, Well he can still talk with texting using his left hand!  He could still stand upright so I could get him from the recliner to the wheelchair, and from the wheelchair to the toilet.  He couldn't give himself his meds anymore, but I learned all that and did it myself.  He could still feed himself.

But now Les can't get himself up and I can't pull him up by myself.  He is losing strength in his left hand; he can barely hold his phone to text (to talk).  He is losing strength to swallow; he can only eat foods that have been thinned enough to feed through a syringe.  We have some of his very dear friends coming every evening to get him on and off the toilet, and into the recliner for bed (he prefers sleeping in the recliner).  We recently hired a gal, Kelli, to come in three mornings a week to get him up and washed.  Kelli also does a bit of stretching with his legs and arms.  The other mornings, either our son Kris or a friend gets Les up.  Les has to make a decision in the morning if he wants to spend the day in the recliner or his wheelchair.  Most days it's the wheelchair; he can get outside on the deck and putz around the house a bit.  He also uses a cough assist several times a day to pull up mucus (like our snot) from his stoma opening.

We have been with Hospice for a month now.  We LOVE nurse Carren and we LOVE the bath aide Sheila.  These gals are so kind and compassionate!  Carren comes once a week - she brings meds and cans of liquid food,  she changes the catheter, she does a quick physical check up.  Sheila comes twice a week to give Les a shower in the bathtub - we use a transfer chair.  Les has also tried acupuncture through Hospice - he's had Robin come once and will probably continue weekly.  She also did a bit of massage, which he loved!

We are currently trying to learn how to use a Hoyer lift and a different version of that lift.  When Les can't bear ANY weight on his own, we will need to use this lift.  He is not happy about it.  It's not a very nice way to be transferred.  But, it will be a necessity and we need to be prepared.

Not a very uplifting post, I realize.  But we are in a very difficult stage.  It's exhausting for me and for Les.  We covet your prayers - we need them.