The Patience of Job

It has been awhile.
Had to get mother moved in with me and situated.
Took care of some of her major health problems. HAAAA
Major. What is a major health problem really when you have...
ALZHEIMER'S?

Shall I offer you her correct diagnosis? Yes indeedy. She has Alzheimer's. Unfortunately, she is at a decent Stage V. She has Vascular Dementia according to her CT Scans and MRIs. Oh, and let us not forget the Normal Pressure Hydrocephalus. After viewing her scans with her neurosurgeon and neurologist, I see where each of these diseases is located in the brain, what formations they make, and except for the Alzheimer's, I understand why she has them. The Alzheimer's threw me for a loop.

Mom is 70 years old. 71 actually. She had a birthday recently. You wouldn't know that. She acts like a five-year old trying to act fourteen.  It is so bizarre and hard to get used to. She had shunt surgery recently for Normal Pressure Hydrocephalus, which she does indeed have, however the Alzheimer's seems to be worse. New doctors and many more opinions to come.

Becoming a caretaker is not something I ever thought much about. Our family has always taken care of the elders. Living with multi-generations is natural. Nursing homes and long-term care facilities were never part of our family culture. Having said that, I look back over the family history and realize that multi-generations living together was done with our grandparents and those prior who did not have Alzheimer's or Dementia.

Having my own fourteen-year old at home as well my 71-year-old five-year-old fourteen-year old, I am not quite sure how this will play out on any of us. Mother for the most part lives in a mental state of another level. Never lucid. "Present" on a rare occasion. When new people come over, or she goes out in public and chats it up, I see she can be somewhat present for them. Returning to her smart, witty, well-educated monologues and exchanges of conversation. People, doctors included, look at us like we are nuts when they hear me talk about her memory issues; NPH, Alzheimer's, et al. Honestly. Her doctors are so new to her, they do not know her as lucid. Ever. So they see this almost phony present mother. It is incomprehensible. Literally.

Everyday is a new day. In some of her more present moments we actually have meaningful conversations. She cries and tells me she doesn't want to live in a perpetual state of forgetfulness, rage, (that is common with Alz.) depression, and all the other ugliness that comes along with it. BUT the bright side of that, as she continually reminds me is that she can't remember any of it. So it rarely pains her anymore to not remember things. She has no idea if she asked the question thirty-six times in as many minutes. She has no idea that she has read the same page in her book over and over since May. May!! May, for god-sakes. So that is her relief. Maybe. I guess I have to believe her. But that is p-a-i-n-f-u-l to watch. Watch her walk around in complete oblivion. When she is present for a moment she says, "Don't worry about me. I don't know it."

I do worry though. Maybe it isn't worry as much as utter heartbreak. What are you going to do...? Just keep remembering that she is the one suffering. She doesn't want this memory loss. She doesn't want to miss her grand-kids growing up. She doesn't want to walk around acting like a five-year old trying to be a fourteen year old. She wants to read. She wants a productive life with her friends. She wants to drive again. Or hop on the jitney and head to the library, the track, or the market without feeling like a prisoner in her own mind.

It is tiring to see. Sadness takes over sometimes. It is unbearable and this is not the worst apparently. A few people have told me I have the patience of Job. Coming from a spiritual, non-traditional religious upbringing, I'll have to read up on Job. Job. Patience. We all have it. Some just have patience mixed with a larger dose of empathy and love. I just try to show respect for her so she won't feel a lack of dignity somewhere in that haywire brain.  Is that the patience of Job?

All caretakers need the patience of Job, if that is the case.

"Simplicity, patience, compassion. These are your greatest treasures."
~ Lao Tzu

 

"Adopt the pace of nature: her secret is patience."
~ Ralph Waldo Emerson

"Humility is attentive patience."
~ Simone Weil