“Today was a difficult day…tomorrow will be better.” This is my mantra. It usually does not pan out that way but it gives me a sense of calm in moments when I need it most. To say that things are progressing with Lissa is an understatement as ALS has now robbed her of her vital movements - walking, eating, typing, brushing her hair, touching her face and now talking.
ALS always has another cruel surprise when you think it has done its worst. It’s a real motherf#%#er! Just living up to my swearing Jack reputation that ALS has endowed
me with.
I could write volumes of intimate details of Lissa’s struggles and my seemingly futile attempts to heal, assuage, comfort, cure, protect, provide and keep her safe but I will leave that to Lissa and her eloquent writings. With the help of her eye gaze computer, she can still give voice to her thoughts and feelings. She is still present, opinionated and funny as ever. Full of ruminations as she feels her way through the process of looking at her life which includes all of you – past and present.
So I will stick to filling you in on where things are at for us and try to give you the latest nuts and bolts of what is happening.
Eating- Lissa now has a feeding tube through which she receives 100% of her nutrition. All meds, supplements and hydration are also delivered this way. She decided to have this operation just in time as swallowing has become extremely difficult causing choking fits and robbing her of the pleasure of enjoying a good rib eye steak. Still having a very small amount of pureed soups on occasion. I’m finding it difficult to adjust to shopping and cooking for myself. So any prepared lunches or meals are always welcome.
Communication - Very difficult to understand her so we are relying on the Tobii computer which has eye gaze technology. She can write on a keyboard with her eyes and talk to me in the room, email and even text. It is an arduous process and she can only tolerate a few hours a day so don’t expect any timely responses. But hearing from you and keeping her connected to the world is very important. Pictures are always welcome.
Mobility - We are now using a Hoyer lift for all transfers. Once you get over the humiliation of the process and settle into a routine it becomes a little less traumatic and a lot safer. The Van has been a vital tool in getting Lissa to doctors’ appointments, dentist, barn and back yard visits. THANK YOU ALL!
Sleeping - We are no longer getting up 8 times a night to adjust her when she gets uncomfortable, cramps, chokes or is in pain. 2-4 times a night is the new average since acquiring a hospital bed and alternating pressure air mattress topper. Last night we only had to get up once to move her. It was like a vacation. …. Fingers crossed.
Respiration - Since getting the feeding tube (abdomen placement) and the Hoyer lift her breathing plateaued for a while but recently is getting a bit shallower. Aspirating on food has become really hazardous. The cough assist, suction and ventilator machines are now daily players in her care. Some days more than others. In concert, they give her diaphragm a break and help with decreasing CO2 build up in her body.
Infections - Lissa has successfully battled Chronic Lymphocytic Leukemia for 15 years. Unfortunately that disease has now caused Hypogammaglobolominia (very low IgG’s), which has weakened her immune system. And now ALS has joined the assault. We have successfully dodged the COVID virus and need to keep protocols in place for her safety. She is presently fighting two infections, but this morning is showing signs of recovery. I’m optimistic we can get back out in the world safely again soon.
Mind and Body - We are still doing daily PT. The limbs have to be manipulated to keep fluids from building up and maintain flexibility. We are meeting monthly on zoom with with MPTF (Motion Picture Television Fund) to discuss issues with a therapist, chaplain and palliative doctor. Amazing loving people!
They are our guides in the labyrinth we find our selves in. After a very scary Aspiration event over July fourth weekend, we are in deeper conversations with them about future needs.
We realize that having a plan will give Lissa control over her wishes and is paramount going forward.
Lissa and I pray sometimes and worry a lot, mostly about each other as we both understand the toll this has taken on us as a couple and as individuals. Even in our darkest moments we still love each other and find time to hold hands, kiss and rub noses…..a little touch to remind us we are in this together.
Bill