“Here I am.”

I often find it hard to write because I feel like those that have been around my Mom will find my stories unbelievable or figments of my imagination brought about by my strong desire to "believe" my Mom is not as "gone" as some might think.

Do not get me wrong, sometimes I find myself telling myself to get a grip, Mom's brain is like the one in the picture I posted here early on. "No it is NOT", I say as I stomp my foot because Mom responds to so many things appropriately whether it is a couple of words or a smile or a shake of her head to convey disbelief or a smirk to tell me she thinks I am silly! She just cannot put sentences together. It is like the filament in a light bulb ... when the filament breaks the bulb goes out but that does not mean there is no electricity to feed the bulb it is just that the filament broke! In Mom's case that piece of "filament" that ensures that Mom's thoughts get to her vocal chords has broken. So imagine the frustration for Mom as she tries so hard to tell me something that I can tell is so important to her and I do not have a clue what she is saying. I can see the pain in her eyes and hear it in her voice. To really get Mom you have to be able to read her aura. Aura has been described as a map of the thoughts and feelings surrounding a person. And to really read that map it helps to know a person's history and personality before the disease. And you have to be in tune with their rhythm and the only way to do that is to be with them day in and day out. Just being around someone in bursts of small doses will leave you feeling as if there is nothing there but let me tell you there is! She will sometimes be interested and engaged in you and sometimes she will not. If she is not it is just because she is just not interested ... it does not mean that she is missing in action!

Just got Mom in bed. Before that she was sitting in her recliner and I said, "Mom are you ready to go to bed? Are you tired?" She said "No". I said "I know, you are so comfortable and enjoying the movie huh?" She said meekly, "Yea". I said, "I know but it is bedtime" Sounding defeated she said, "Okay". Louis goes to get her up and in defiance she goes stiff which makes her impossible to move. I said "Mom I need to get you up out of this chair while Louis is here because I cannot do it by myself". "Ok" she said and worked with him. You see she gets it, she understands what is going on! And one thing about Mom is if I approach things in a way that she is helping me she will comply.

We have talked about how having Mom here now is not much different than when she would visit years ago. She was always quiet, never talked much, and was a wonderful listener. Just like she did when we would sit around the dining room table in RS and I would be talking to Dad about some thing and she never talked much but she would look at me and listen and her eyes told me how proud she was of me. It is the same now ... when there are conversations going on she will listen so intently and I will catch her looking at me, smiling, sometimes as if to say you are so funny and other times you are so smart.

So if you hear Mom chattering she has a reason. Maybe she is cold ... maybe she is wondering where we are ... maybe she does not like that the people in the movie are arguing ... maybe she is watching Sunday Mass and we are being too loud or talking ... maybe the dogs are being too rowdy! But anyway 95% of the time she has a reason and it is not just jabbering. The other 5% of the time we have become quite skilled at tuning it out! ; )

I was glad to see my thoughts verbalized in this book.

“Much of our loved one’s suffering is invisible, at least to the outside world. Sometimes we’re the only one who knows the pain is there, where it comes from and how severe it is. We try to explain it to others, but they aren’t around to witness it, day in and day out, the way we are. We stand alone along side our loved ones as the vessel holding in all the fear and sorrow and hurt.

We are the “holy watchers,” the keeper of the flame of love. Some day, just being there as caring witnesses is the most important gift we give.

Be with me dear God, as I say to my dear one, “Here I am.”

Pat Samples - Comfort and Be Comforted: Reflections for Caregivers