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.

Monday, August 22, 2011

The Pain of Elderly Care

As most of you know, my mother has been diagnosed with dementia. I have posted about how caring for an aging and ill parent is a lot like raising children with special needs. Physicians do not understand the unusual effects dementia has on its patients. Certain illnesses and medications can create depression, anxiety and even rage inside the minds of individuals diagnosed with this disease.

My Mom is taking a variety of psychotropic medications prescribed to help keep her in a balanced state of mind and to help control the crippling effects of memory loss, panic and paranoia. She also suffers from scoliosis and severe back degeneration. She has become hunched forward and struggles to walk. But for me, it is her constant state of pain that is just too heartbreaking to bear. Because of her short term memory loss, she asks for aspirin over and over again and if left unattended, would consume an entire bottle.

For several years, I have been taking her to a pain clinic where they work with me to try to help control her symptoms of pain. Left untreated, any kind of pain in an affected individual can increase the symptoms of dementia. Folks diagnosed with dementia have difficulty articulating where they feel pain. So, the anesthesiologist and I must communicate well with each other to play a kind of medical detective role in diagnosing and treating my mother's pain.

As I mentioned, Mom is already on many medications, many of which can have unusual side effects unique to patients diagnosed with dementia. Because of this, physicians are wary of adding or prescribing more meds. I, of course, agree since some of the side effects are as severe as causing cardiac arrest and even death. This limits our treatment options.

The anesthesiologist described a technique we could try that uses cortisol injections placed into the hip joints to help alleviate swelling and nerve pressure. It is effective at treating pain but once again comes with some possible side effects. Since it is a steroid, if used excessively, it can further increase bone brittleness thereby increasing her back degeneration. In some patients, it can also cause behavioral changes. After much discussion with my brothers and sister, we decide to go ahead with the treatment.

Last week, I picked my mother up from the assisted living facility, placed her wheelchair in the back of my truck and brought her to the pain clinic. She was unusually happy and mentally clear. For a patient, having dementia is a lot like becoming a lion, one day you're as docile as a kitty cat, the next day you're as ferocious as a beast. Today, she was a kitty and I thanked God for this gift.

We arrive at the clinic, where she is treated with loving care. (another prayer answered by God). She is a trooper and tolerates the long day and tricky procedure well. (They must take an x-ray while giving her the shot to ensure they hit the correct location.)

I transport her and wheelchair back to her home. I head back to my home to collapse. I am exhausted from such an emotionally and physically exhausting day but am anxious and hopeful to see my mother finally pain free.

The next day,  I receive a call from Heather, the Director of the Memory Support Unit where my mother resides.

"Lisa, your mother is not quite herself," she explains.

"Yeah, Heather, we had a pretty busy day yesterday, she may be tired." I explain.

"No, you don't understand," says Heather, "she has become "The Hulk!"

"What?" I respond, stunned. It is difficult to imagine my mother, who is about 4 foot 9 inches tall, becoming hostile."

"She is not happy," Heather explains, "She did not sleep at all last night. She has packed up all her things and has started to throw some of them. Usually, I am able to calm her down, but today she looked at me with hate, darkness and rage in her eyes." Heather's voice begins to waiver as she describes how my mother has become a vulnerable hostage to a terrible side effect of the steroid.

After a lengthy discussion, Heather and I put a plan in place. She calls the pain clinic, I call my brothers and sister to see if one of us can visit with my mother to help soothe her emotions. Thankfully, the clinic explains that she should see some relief from the hostile emotions within 24 hours.

The next day my mother does improve, I am thankful but also very sad.

I am sad for my mother since her pain treatment options are now even fewer.

I am sad for me and my siblings. It is so difficult to watch our mother attacked mercilessly by the effects of dementia and pain. And when we try to help, we sometimes make things worse. She is suffering and there is not much left that we can do for her.

For us, it is like living in hell. For her, it is even worse.


The Henrys said...

Oh Lisa, huge hugs to you. I am so sorry that you, your siblings, and your poor mother are going through this. It's just not fair is it? I remember thinking when my grandmother was dying, that she had worked hard her whole life and she didn't deserve to suffer. No one does. My grandma passed quickly and I can't imagine how hard this is on you having to watch this for long term. Again, huge hugs to you. Thinking of you...

Lisa said...

Thank you for the hugs Debbi..and your friendship.

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