Welcome

This blog is intended to be a part of my personal journey as I watch my mother journey through Alzheimer's disease. I am writing to help me work through the grief of this long disease, and I hope that my thoughts might help you also.

Friday, October 18, 2013

Tangled

Tangled.  That is Mother's mind.  Like a thin, gold chain, some days the knots and twists in her mind are impossible to get beyond. Just when you think you have identified all the twists, another wraps itself around the chain and pulls tightly. Tangled.  And the chain will not give in to even the gentlest probing; the knots only tighten and become unyielding.

Now the tangles are taking Mother's speech.  On good days, she can say a word or short phrase understandably and loudly enough to be heard.  On bad days, she only blinks her eyes, or nods her head or points with her chin;  there are no words.  But the worst days are when she whispers.  She hisses and slurs words so softly I can't make them out.  She becomes frustrated because I can't understand. I become helpless before the tangle of sounds unable to respond to her requests, only guessing what she might be trying to say.

The tangles in her mind and the small stroke from a year ago are  taking her body.  The clenched and contracted hand no longer responds to therapy.  Her shoulder and arm are beginning to contract. On some days her legs work, and she can shuffle along, but now she occasionally must use a wheelchair.  The tangles might be in her brain, but they have long tentacles that reach to all of her body slowly wrapping it up in their tight bundles.  And I have no tool to untangle the knots in her mind and body.  I can only sit and hold her hand and watch.

 

Thursday, October 3, 2013

The Thing Is . . .

Guilt.  It has plagued me since we first moved Mother to assisted living and then to the nursing home.  I am not a guilt prone person.  It has always been something I avoided or rationalized away.  But for the last five years, I have felt guilty almost every day.  I've felt guilty when we had to take Mother away from her beloved home.  I've felt guilty when I could only stay a few minutes to visit her.  I've felt guilty if I couldn't go see her.  I've felt guilty when there was a family celebration and she couldn't be there because she was in the nursing home.

None of this guilt makes rational sense.  I can't control the Alzheimer's disease. I can't spend all of my time at the home with Mother.  I can't ignore the rest of the family.  I have to take care of my own health. Yet, the guilt persisted.

But I am beginning to learn to let the guilt go.  After being either in the hospital or confined to my own bed for two weeks, I had time to think.  Guilt does me no good.  Guilt does Mother no good.  
 I am trying to let go of the guilt of not seeing her every day and to replace that guilt with gratitude for the times I can visit her.  I am trying to learn to let the visits be a part of my life instead of letting the visits drive my life.  The thing is . . . this is difficult.  

So today I had the time to visit Mother.  Yet, I still feel the need to let my body recoup from my recent illness.  I had to balance the choice.  I had to consider.  The guilt started.  I looked at the situation rationally.  I stayed home.  But then again, there is time later today . . .