Help Me. I've Fallen and I Won't Ever Get Up or Walk Again

So long since my last post, why bother. To the point: my mom is days away from dying. Alzheimer's Stage 7 is one ugly way to die. She has progressed down this unstoppable slope with speed and velocity even her caregivers are shocked at.

When I saw her yesterday I fell to my knees, pounded on the concrete floor and started crying. 8 days ago I visited her at Harbour House Memory Care in Milwaukee. She'd been here since last September. That day was a warm February day, so we ventured out on to their 2nd floor balcony. She was walking fine with the walker. She was alert, talking the best she could. I could understand her and she knew who I was. We sat in the sun, warmed by the hopes of Spring. She told me to listen to the wind. I was a great moment for us. For me, really, as this was a chance to look at her with her eyes closed, nothing really left but trying to breathe in life for what it was: air blowing past her nostrils.

The next morning I got a call from my sister at 5:30am saying Mom had fallen and hit her head. That of course means an automatic trip to the ER. Stiches. CT scan. All the tests to see if there was a stroke or something else to tell us why she might have fallen. But, right then, at that time, I was ice fishing so no point in me packing up and going back home to sit in the ER. I didn't make it to the hospital that night either. You know, I'm too busy with me. It's called selfishness.

I did make it to the hospital the next day, though. And my God what the hell happened! There she was in bed with that fucking "dementia stare". That deep, blank, distant gaze into nowhere. With eyes half closed, hair matted down, no words really to be spoken, this was a major downturn. I hadn't seen this coming. And the last time I'd seen this look was in my mother-in-law who died from this disease 8 years ago. My sister and niece were bedside and I fought to hold back the tears and emotions. This was bad. The fall had done something to her. I'll be damned if I was just going to sit there and watch her fall to pieces. "Mom, let's get up and take a walk." She said "sure, let's do that".

So, with my sister we got her to the edge of the bed and managed to get her up and positioned with the walker. Barely able to put one foot in front of the other...muscle memory fading...from just two days ago...she shuffled her feet for about 20 steps. We turned around and got her back to the bed and Jesus, just to get her to turn around and drop into bed was a major task. Every little thing we all take for granted, like putting your foot on the ground and then lifting it to start walking, was almost gone. She was just walking fine three days ago! Fuck this!!!!!!!!!

I just sat on the edge of the bed in disbelief. My sister was crying. She's a hospice nurse and was calling a colleague to start hospice watch. What? That means you think she's going to die in the next couple days. Based on how she looked I had to agree. But this was a decline of absolute stunning proportions.

To make things worse, Harbour House was now saying they weren't sure she could come back there to live. At this point she needed 2 person assist, which means no go at this facility. It's not a nursing home. Now I have to make a snap business decision of where to go. My sister knew of a place closer to her, The Woods of Caledonia. We had already ordered an assessment several weeks ago, but had no clue this would come to fruition so quickly. What TWC did was a great gesture to help us make a difficult decision: we had to move her to what most likely would now be the place where she dies. Life to death caring. We made the decision and signed paperwork that was constructed late into the evening. Quite a different approach to what I was getting from Harbour House, which deserves it's own post to talk about how NOT to handle this situation.

It's 8 days later now. My sister picked mom up from the hospital and somehow got her into her SUV and brought her to TWC. I had to go out of town on a business trip that day. I combined three more days for a mini vacation with my wife and daughter. I talked to my sister and she said mom was ok but not doing much better. I got down to the new place hoping to see her recovering from the fall, able to get back to using the walker and start seeing some progress.

When I started walking down the hall, I could see my sister had just got there and was right in front of me. "Hey, Cyn". That's short for Cindy. It's what I've called her all my life. There's mom, in a wheelchair straight ahead. There's mom, slouched over, with this almost stroke-like mouth droop combined with sick distortion. She's mumbling, pulling at her clothes. Eyes closed. Head drastically leaning left. This is the face of dementia. Full blown Alzheimer's disease sucking the life out of a human brain with intense fury. And this is God's Will?

I was crushed with grief. This is very close to the end. In the wheelchair with no hope of ever walking again, with no hope of speaking cohesive sentences again, she said "I've got to get out of this trap." Her voice was a whisper. I pulled as close as I could to hear. I cried and swore. I told her I loved her. I asked her "Do you know who I am?" Yes, you're Mike. I asked what's my name? And in an instant she said "Michael James Pintar". This is so fucking miserable, the pain, the hurt, the grief. This cliff she's fallen off. Yes, she's fallen and will never get up or walk again.

May God have mercy over these next few weeks. I called the funeral home today to make plans for what will happen to all of us: We die. Mom will die soon.

We're All Going to Die Sometime

Such profound words from a woman with Stage 6 Dementia. The crippled mind can still associate human emotions with consequences, even if they're not the result of immediate actions. Today we met with the caregivers at Harbor Village. The time is quickly approaching when we have to make that tough decision about moving Mom to memory care.

It's been months, maybe a year since my last post to this blog. Life just flashes by; who's got time to write about memories. Especially on a blog that so few know about. But, so many are in the same boat. With Alzheimer's and dementia cases climbing at astronomical rates, lots of families will be impacted. For me, at 58, chances are I'll be diagnosed at some point. And when we reach this point where you can't take care of yourself, and your actions are viewed as "dangerous", the family is left with a choice: what to do with the patient. Remember caregiver, that's my mom (or dad).

So cold and seemingly matter of fact was the discussion.My sister is an RN and works with people who are dying: so close to death they can taste it. And they surely resemble it with their outward appearance. It's interesting when you see someone at the end of their life and think "they look like they're going to die." At least, that's the way I think.

"Mom, nobody's going to die." Those were my calming words. Even though, strangely enough, this move, this place, memory care, is about getting ready to succumb to the disease. For my mother-in-law it took 8 years of getting ready: Physically strong, mentally wasting away, it was brutal to watch this person remain alive with advanced Alzheimer's.

Closing up Phoenix- Leaving these Memories Behind

Traveled with mom down to her condo in Sun City last week. Our goal was to clean the place out and put it on the market. Determined that this was the first time since I was about 17 that I spent an entire 5 whole days with her! From sun up to sun down. Learned lots of things about her, and me, and Alzheimer's.

While we got a lot done, there were lots of teachable moments for me regarding patience and the power of forgetfulness. In the end we had lots of great times down there and I felt much closer to my mom than I've felt in a long time. We never know when our parents are going to leave us: In this case mentally may precede physically.

Doctor Visit

This is a late post. Hey, I forgot! Last week I went with my mom and sister to my mom's doctor. This was the follow-up visit to discuss test results. My fears were confirmed: early-mid stage Alzheimer's. Dementia is another word for Alzheimer's.

So we went through different scenarios. I posed a lot of questions and Mom dropped the "S" bomb when discussing how she would deal with possibly moving to assisted care. S as in suicide. Right the to doctor's face. The doc was very surprised. And of course, she asked if mom was depressed and she had some pills for that too. Shit, I was depressed and I didn't even get the diagnosis. Too many pill pushin' dr's out there.

We talked through that and I think Mom was convinced in the end that we are looking out for her and this is what loving children do for their parents. Her diet was addressed, living in the condo and response to Exelon. I had to push a little bit and talk about things that have been glossed over before. Plus I got to sit there and hear it right from the dr's mouth about the prognosis.

And so it's confirmed by one doctor: Alzheimer's.