MAMA LOVE: She's almost there. She's there.

Editor: Alzheimer’s Dementia is a terminal disease that takes its toll on the Personhood of someone living with the increasingly dismaying progressions of the disease. A family member, either a spouse or an adult child, becomes despairing caregiver to the disappearing personality. At the End, dementia overcomes the organism so it abandons its shell. 

Caregivers have final obligations over time: deciding when to begin in-home hospice and palliative care, then watching the body leave the caregiver’s home for the last time. 

Time. That’s all we have after that neurologist fills out that form “dementia of the Alzheimer’s type.” Time is what we have. 

Today’s Guest Columnist, Nicki De Necochea, updates her February 16, 2021 column (link). That was a time three months and 27 days past. Every minute of every day, caregivers live with the disease. Before today, De Necochea was able to end her column recalling a sparkling moment lucidity:
My favorite thing she still does when hugging me is when she says, “you’re beautiful mija”.  My mother not only is communicating, expressing her love, but she knows at moment who I am to her.  Gratitude; I take nothing for granted.  

MAMA LOVE: She's almost there. 

Nicki De Necochea 

My viejita has for a time maintained her status, as stable as we could possibly expect, for where she is in in her Alzheimer's disease and trajectory. This has included hospice care for the last two months. 

Weaker and thinner, but still sitting up, standing for long enough to sit her in her transport chair, responding to simple questions and hugs and I-love-Yous as recent as this Thursday, and amazingly, remaining part of her daily "being," until this last Friday. 

Something changed and it was dramatic. A seizure of sorts, glazed eyes and she is in another realm, and no longer responsive. No muscle tone, and her body now just weight. Taking nourishment and hydrating has been consistently less, and has now, as of two days ago been replaced with inability to do these as well. 

Her transition is noisy, part of the Alzheimer’s which includes involuntary groaning and moans, distressing because that's what we as humans do when we're in pain. I've used an eyedropper to give her her anti anxiety med/and pain med, just so I feel better in case she does have pain or discomfort, and she's not "drinking" so the drops make it more able for her to swallow. 

I'll let the nurses take over tomorrow should she need something stronger. Some of the stuff we do is so we feel better as caregivers, right? 

I lie next to her and speak to her just to tell her I love her, that I’m here, that she’s not alone. I’ve read our hearing is the last sense to go, so I reassure her as best I can that I am right here, we are together and she can rest. That I'm not going anywhere. She quiets when I do that. Music is on, Pandora sweet stuff. 

Yesterday was the marked big change, and a sign that she's working hard to make that transition. This is the hardest part, for her; but also, for us. It’s hard to feel powerless. 

I’m list making, cleaning, fidgeting and doing all the keep-me-busy things, I can think of. Lists…like I'll Up the nursing visits to daily starting tomorrow. Place the order for the hospital bed not needed until now. 

Figure out what to dress her in when she passes; ask for hospice to have someone come to help me bathe and dress her when she does pass; be sure I know who to call if she does; because my brother is out of town as of Wednesday and I'll be on my own if that happens sooner…shit like that. All the just in case/just in time stuff. 

And my expectation is that these hospice “angels” will help us with the acceptance part, with less anxiety, and a better idea of what my gut says is the reality, and imminent. 

Why am I sharing this? Well, because it helps me process, and face the truth; and maybe one day will help one of you know what to expect in a similar circumstance. And because I think discussing such a huge family milestone should not be a quiet thing. Just as important as the births, birthdays, Mothers Days, anniversaries; family celebrations and the lot....maybe more so. It should be spoken, felt, shared and laid down. 

I am so grateful for these past 7 years with her under the same roof; both of us helping each other adjust to the coming of this very time, this exit, this reality that she has given us her all, and we too have given her all we have been able to, and willingly gave to make these years just the absolute best. Thank you to each of you who have given me so much strength, support, encouragement and shown your humanity in your caring. 

She was a force! 

We are also fortunate to have that force of family and community caring and the openly shared concern and affection. Thank you from my heart. 06.12.21

6.14.21 There

My mamacita passed this morning with me at her side, peacefully in her sleep. 

We stayed up together until about 2 a.m., me doing all the talking, and listening to music. She was gone by 5 a.m. So a very heavy day, with a lead weight for heart. 

Just now, my first chance to get to take a deep breath, the house too quiet, the bed empty and not a thing that needs doing. What now. She's gone....and her body too. Too much reality is so painful. I'm calling up the chingona in me to get me to keep me moving into the next steps. 

The hardest, hardest part of this journey was not the work, or the selflessness, or the sadness of watching the disapearance of who she was. The hardest part was watching strangers roll her body. All zipped up and removing her physically from me. Cabrones! 

Then, a gutteral wail from the depths; oh, and then I threw up. So indelicate.

Interestingly, when she passed, I opened every window, the bedroom door to the outside patio, and I saged her and my house. The open door and windows symbolic of allowing her soul to take flight. 

I couldn't believe how calm I was. I went out to the patio, to call my niece and as we were talking, a hummingbird came within 2 feet of my face, and just hovered for what seemed a message. Symbolic and reassuring.