ALS: This Disease Really Stinks

One year and four months after diagnosis.

It's hard to believe how quickly this time has flown by, and yet at the same time it feels as if we've been bogged down with this disease for a very long time.  I look at pictures of my mother from one year ago, and she was still using a cane.  She is now totally bed or power wheel chair bound.  She still has movement through her trunk and neck and very limited movement of her left arm.  She has lost her voice.  We use a hoyer lift to move her.  She has an eye gaze computer called a Tobii Dynavox to communicate, but Medicare doesn't allow this until speech is pretty much gone.  This is unfortunate because training and instruction would have been a lot easier for her if she had still been able to answer questions.

I have caregivers in the house from 8am - 5pm and then dad takes over.  He's not doing that great.  He is very depressed and has nerve damage in his neck, which I don't doubt is from lifting mom.  He needs surgery but will need to wait until mom leaves us.  Mom stays in positive spirits and everyone who meets her talks about the light that shines from within her.  I'm so proud of how she handles this and I aspire to be more like her every day.  This is a difficult journey for all of us.  Mom is on hospice now and I think that the biggest danger at this point is that she aspirates a liquid (she gets all of her food from her feeding tube but still drinks some liquids) and develops pneumonia.  Otherwise, she will eventually lose the muscles in her diaphragm and no longer be able to breathe.  She has decided not to get a tracheotomy.  Our family supports this decision.  My sister has taken a break from the corporate world and is a caregiver for mom (and Visiting Angels) two days a week.  This time is so important for them.  

It's not all doom and gloom; at this point mom can still get out and about in her power chair to shop, ride on smooth trails, go to the park, and come to my office to visit.  She also has lots of visitors.  She gets tired quickly and easily, so we have to do a bit of scheduling.  We just try to spend as much time as we can and laugh as often as possible.  

I have such a strong support team between family, friends, and my wonderful co-workers.  My husband and son are the absolute best.  I don't know how anyone could get through this on their own.  My husband gave me a "gratitude journal" for Christmas and I make it a point to record the things that I'm thankful for every day, which has helped tremendously.  It may be something as simple as, "I received an unsolicited hug from my 10-year-old" or "we got really tickled at work today about ____," but it really is helpful to remind myself that every day, good things still happen.  

Much love and many prayers out to anyone dealing with a disease process in your life, be it yourself or a family member.  I hope that you have a support system and are able to take some time for yourself.  Contact your local Visiting Angels agency and arrange for some help or respite care; it is more valuable that you can imagine!
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