Our Journey Raising Two Children with Special Needs

This blog chronicles our life raising two children, Nicholas 15, diagnosed with Prader-Willi Syndrome and Weston 18, diagnosed with Autism/Asperger's/ADHD. It's the ups, the downs, the joys, the sorrows and most importantly, the beauty of living a life less perfect, a life more meaningful.

Friday, October 14, 2011

More of My Mother's Pain

My father passed away twelve years ago. Shortly afterwards, my mother was diagnosed with dementia. Since then, I have watched her slowly deteriorate mentally, emotionally and physically.

One of her ailments is spinal deterioration which causes her to be in pain. We treat this pain by visiting with an anesthesiologist at a Pain Management Clinic. Massachusetts law dictates that we must physically pick up narcotics prescriptions at the physician's office every month. Thankfully, her doctor agrees to give her two months at a time so we see him every other month. And while the treatment plan is indeed helping to manage my mother's pain, getting her there is another story.

She has difficulty walking now so I transport her by wheelchair. The wheelchair is heavy. I lift it in and out of my vehicle several times during our trip. I also must remember to bring her afternoon anxiety medications.

This week....I forgot.

As I maneuver her into the Pain Clinic, we discover that the doctor is behind schedule. This is a problem for me since I must transport my mother back to the assisted living facility and be back in time to pick up my children from school. As I mentioned, I have also forgotten Mom's anxiety meds so waiting in an office will no doubt start to upset her. This is not good.

After about an hour, the doctor sees her. He has his back toward us and is entering Mom's information into the computer. My Mom is now very anxious. She starts to develop some disturbing shaking movements. I can only describe them as Parkinsonian-like. Her left leg starts to shake uncontrollably, her right arm starts to flail. She can't stop it and she begins to cry.

"What's wrong Mom?" I ask.

"I  can't stop it." she says with tears now streaming from her eyes.

"Has this happened before?" I ask her.

"Yes," she replies.

"Do you remember when?" I ask.

"I can't remember," she answers and I am not surprised since dementia causes memory loss. And yet, despite her difficulty remembering things, she is acutely aware of this disturbing new ailment.

I think maybe if I stand her up, this involuntary movement may stop. I try to help her to her feet, but she drops immediately back into her wheelchair.

The doctor, still with his back toward us, is completely unaware of what is going on. He finally turns around and is confused why my mother is crying. I explain what happened and he tells me I need to bring her to her primary doctor. Once again, this is not good.

Mom's shaking and crying continues. I try to get out of there as soon as possible. I feel helpless and angry, unable to comfort my mother and soothe her pain. I am powerless and sad. I am angry at the doctor and his indifference. I do not want to cry and upset my mother even further but inside I am sobbing, questioning God why he is doing this? What purpose can this possibly serve? Why must my mother suffer like this?

I try to whisk her out of the office, but she tells me she needs to go to the bathroom. We have just gone 5 minutes ago and I wonder if this is a side effect of the tremors. We get to the bathroom and I notice she smells like urine. I believe she has lost control of her bladder during the episode. I help her to wash.

When we finish, I hurry her into the vehicle and back to her room as quickly as possible. I am running out of time and need to go pick up Weston and Nicholas.

As I wheel her into the facility she says,

"It feels like I have been away for a year,"

"Well, after what we went through, it is no wonder you feel that way," I whisper to her.

"Oh, why what happened?" she asks and for the first time in twelve years, I am thankful for her memory loss.

I leave the assisted living facility but not before informing the staff of her shaking episode. I ask them to observe her and watch for any more tremors.

I pick up both of my children from school and return home to call my mother's psychiatrist. I describe the tremors and accompanying incontinence. We carefully review my mother's medications. She explains to me that this episode is not a side effect of her medications. It is yet another symptom of her dementia. Parkinsonian-type tremors can occur in patients diagnosed with this illness. Or, she may be developing Parkinson's Disease itself. She explained that it may worsen over time. She suggested we see a Neurologist.

I am not ready to hear this. My mother has been suffering for so long. She does not need any more pain or another diagnosis. I realize at this moment, that I am forgetting who my mother was before her illness and I am saddened even more.

Just then, my husband Pete comes home from work. He places his hands around my waist, gives me a warm and tender kiss and says,

"Happy 15th wedding anniversary my darling wife."

I am overcome with emotion....and start to sob.

Mom and Dad newly married


Elizabeth said...

This has made me weep, too. I am so sorry. How terrible it must be for you to see your mother like this -- how difficult to become the caretaker of the person who cared for you. You sound so amazingly compassionate and strong, although I know it must be excruciatingly difficult. Take care.

Anonymous said...

That is a beautiful picture of you parents. I know how hard and painful this time is for you. I will be sending positive thoughts and energy your way.

The Henrys said...

I love that picture of your parents. They look like two movie stars, standing there.

I can only imagine how hard this is for you and your mother. Please know that you are an amazing woman, daughter, wife and mother. You do incredible and loving things for your whole family.

Hugs and thinking of you...

Lisa said...

Thank you all for your words of comfort and support. You have given me the strength to endure this difficult time and for that I am very grateful.

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