ALS: This Disease Really Stinks

Week One

My mom was given her ALS diagnosis on Thursday, February 1, 2018.  Her symptoms manifested in Spring of 2017 with two falls, followed a couple of months later by drop foot.  She had loss of appetite and lost around forty pounds in 2017.  She started showing signs of fatigue and confusion, depression, and symptoms of dementia.  I had suspected for months that we might be dealing with ALS; however, when the diagnosis came, it was still a shock.  I’ve never so desperately wanted to be wrong.

A very large part of why my husband and I became part of the Visiting Angels franchise is because of the experience of aging within our own families.  My maternal grandmother passed from Alzheimer’s disease, and my paternal grandfather passed from Parkinson’s disease.  Because my natural father passed from cancer when I was six months old, my “step” family is as much my family as my birth family, and my step-grandmother lived her last nine years with my parents in our family home; that experience almost killed my mom, because unfortunately that fine lady was a much better grandmother than a mother-in-law.  My husband’s mother sadly passed from cancer under hospice care shortly before we met.  Kevin and I felt a strong tie to this business model and thought that we had something to say and contribute.

Daily I experience with families the pain of making decisions about care for their loved ones.  I always knew that this would, in no way, prepare me for when it came time to start making those decisions when it came to my own parents.  Even though in my heart I knew that my mom had ALS, I was still shocked upon receiving the official word of it.  I liken this hospice care:  when counseling caregivers going into a hospice situation, I remind them how sensitive we must be.  It doesn’t matter  how long the client has been ill; when they come home from the hospital for the last time and start hospice, the family is so confused and frightened.  They don’t know what is going to happen, who is supposed to do what, how they’re going to take care of everything, what role the hospice company plays, what Visiting Angels does, etc.  I train my caregivers that in addition to the role of taking care of the client, we are the gatekeepers for the family – we must take the stress from them, let them nap when they can nap, keep the refrigerator cleaned out from all of the well-meaning friends and church members, answer the phones, and even tell people that they need to come back at another time if everyone is finally sleeping.  That’s kind of how I feel now – I feel like I need someone to run interference for me, because I feel very fragile and very volatile right now.  When I was with my family today, I was able to speak frankly about things that need to be done:  appointments at Emory, DNRs, medical powers of attorney, drug trials, and financial considerations.  Then, in the next moment, I looked across the table at my mother, my sweetest, most wonderful person in the world, and wept.  It is surreal.  We are all grieving while she is still alive.

Then she started to give things away.  “I want to see you enjoy them,” she said.  My sister and I just looked at each other with tears in our eyes, as Dad cried and told us to do what she wanted.  He’d already talked to me about selling the house when she’s gone because he won’t be able to stay there.  The house that we all grew up in.  I can understand, but things are moving too quickly.  Our swing-set is still in the backyard with our hand and foot prints in the cement, and not too far away is the family pet burial ground.  My heart aches.  The house smells as it always has.  I still know my home phone number.  I feel as if I can’t breathe.  I can’t imagine how my dad feels.  I just held him for so long today.  He is so pitiful and doesn’t want to outlive her.  If he does, he will not do well on his own.  In my professional experience, this is often the case.

So, our next stop is Emory.  I confirmed on Friday that they have received the referral from mom’s neurologist.  Dr. Glass, the head of the ALS clinic, reviews the information and then they contact the patient for scheduling information.  Unfortunately (or fortunately, depending on one’s point of view), mom seems to be progressing rapidly.  She wants to fight and take part in whatever clinical trials that she can, if not to benefit herself, then to benefit others.  I love my momma.  I will back this completely unless it starts to interfere with her quality of life, and she agrees.  We should hear from Emory by next Thursday, February 8, with scheduling information.  Thank God, we live so close to a good center.  Thank God, I can take care of my mother.  My parents would not be able to afford this otherwise.  Thank you, Lord, for leading me down this path – as always, you knew what you were doing.

Each Visiting Angels agency is a franchise that is independently owned and operated. The Franchisor, Living Assistance Services Inc., does not control or manage the day to day business operations of any Visiting Angels franchised agency.