A New Normal at Mom and Dad's by Joni

Things look different at my Mom and Dad's house these days.  Here are just a few of the changes you see when you come there: 

Hand Sanitizer at the door with a note for all visitors to use it upon entering... a cold or the flu would be very hard for my Dad to handle at this point. My mom is trying to get him to stop shaking people's hands but that is a difficult habit to break. (especially after 21 years in the consistory where they do a whole lot of hand shaking!)

The wheelchair lift from the garage into the house, the portable wheelchair parked in the garage, the power wheelchair plugged in and charging up - ready to roll!

The handicapped parking sticker on the van...

There is a bar on the side of the bed now to help Dad sit up at night. He can often only get half way up while pulling on this bar and then my Mom has to help him pull up the rest of the way. The physiotherapist began training her in some lifting techniques today to help protect her back. Dad is often not able to assist much and is "dead weight" which can make it very difficult for Mom to manoeuvre him.

The bipap machine,which is becoming essential for Dad to sleep, sits on his night table.

We may soon need to install a lift system because they have already had one situation where Dad fell in the night on the floor and Mom could not get him up on her own - she had to call Goran for help in the night.

There is a lot of education needed for our whole family in equipment and lifting techniques/ exercises etc. as the disease progresses. Most of Dad's care is falling on Mom right now, and she is happy to do it, but we are ready to step in and help out as she requires more help and Dad requires more care.

Dad's button that hangs around his neck and starts a call sequence to Mom and his children in case he would fall and need help and no one was home.

A large "doorbell" ringer - if Dad hits the big yellow button an electronic doorbell sound will ring in the house and he can summon help if he doesn't have the strength to project his voice.

Daily vitamins/ pills.

The HUGE stack of cards which encourage my Mom and Dad so much - they treasure every email and card sent to them.

Dad is really enjoying the Ipad. Turning the thin pages of the Bible and other old books is difficult - reading the large clear font of the Ipad, and turning pages with a simple swipe of his finger has been a real blessing.  The daily inbox - always full of encouragement and thought provoking things to read.

The computer has become a vital part of Dads life - both in his personal devotional life and in his contact with the outside world. As his physical world becomes very small (from the armchair to the bed and back) he is still able to stay very much in touch with the world around him through the blessing of technology.

The physiotherapist showing us some new exercises we can do on Dad.  They have provided him with some relief from the cramping at night, as well as increasing his hand mobility, making it easier for him to use a fork and spoon again.

Joni doing physio which helps to open up Dad's chest allowing him to breathe deeper and easier.  The ALS is causing his muscles to curl up - his hands, his feet, his chest, his head - they are all returning to a fetal position. The goal is to open up his arms, his legs and his chest to allow him to breathe deeper, and prevent cramping and loss of motion (which can be permanent if not regularly exercised). The stretching routine takes about an hour to do and seems to be showing real results which is very encouraging. Mom enjoys some time alone to run errands, get a haircut or go for a walk and we get a chance to have some one-on-one with Dad which is a treasured time.

Dad pretty much lives in this chair.

He likes to have it elevated - it makes breathing more comfortable and it is much easier for him to get out of the chair with it in an upright position. We are thankful that he is still able to use the walker a little bit in the house.

Mom and Ella hanging out on the walker.


When Dad was first diagnosed with ALS, somedays we could still forget that he had it, but it seems harder to do that now. His voice is different, his arms are weak, and the reminders of his ALS are everywhere in their home now. I was reading about sanctity of life Sunday and thinking about how our world devalues life.... Starting with the preborn, then the handicapped and then the elderly and the terminally ill... so many gifts from God can be revealed through difficult situations. Dad still has so much to offer and just being with him is such a blessing. We look forward to every visit with both of our parents and value their counsel. 

I was speaking with a friend who lost her mom to cancer and she was sharing how she just longed to share one more cup of coffee with her mom even if her mom was so radically changed by the disease. She treasured those moments as the gift they were. There is something about knowing you will lose someone that heightens the relationship to a point you didn't know was possible - it brings a sweet intensity, honesty and transparency of your feelings that helps bring the rest of your life into a proper perspective. Anne Voskamp, in her blog www.aholyexperience.com writes of walking by the beach with her mother, aware that they won't do this forever, that she will one day lose her mom, and she says:

When you wake to losing someone, you win love. When you realize that what you have, you will lose - you will win real eyes. You win grateful joy....it's only when you realize everyone you love will one day leave you - that you really begin to love. Close your eyes and imagine a day without sight. And you open them to a brighter light. Imagine no water. And the next glass quenches like desert rain. Envision life without the loveliness of those you love - and you see how much you love. There's a way to wake up and not to live numb. The way to love life is to imagine losing it. He who loses his life shall find it.

Treasuring these days we are still together, and comforted knowing this world is not all there is, but we will one day be together with Jesus,

Joni