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.

Is anybody out there?

Yesterday was quite a frustrating day. I scheduled a dinner at Harbour Village for Mom. The coordinator said they were having an event after dinner at which she could attend and meet a couple of people. So I called Mom and told her to meet me there.

I gave her specific directions which I thought would make for a simple trip; once on the freeway, exactly 1 turn into complex. She called me back before she left to review the directions. It sounded like she was clear.

I was wrong. 30 minutes late, an hour late, 1.5 hours late. Now I was worried. I called her cell phone, house phone, my house, my nephew (she had previously scheduled meeting him, but changed those plans to meet me) to no avail. Cell went right to voicemail, so she probably had it turned off. Nothing made sense. Where in the hell was she!!

I was sitting in the driveway of Harbour Village with my car pointing at the street, hoping I would see her drive by. After 90 minutes, a security guard came up to me to ask what was going on. I told him the story so we went inside because he thought she was in there. She wasn't. Not knowing what else to do, I got back in my car and decided to drive to her house on the route she was supposed to take. I envisioned the worse: her car piled up in an accident. I asked God for help and please don't show me something I don't want to see.

I called my wife, Laura, to let her know what was up and what I was doing. In frustration to what she was telling me to do, I cut that call short. About halfway to moms' house, Laura called me to say Mom had just pulled in the driveway! This was 2 hours after we were supposed to meet. I could hear her in the background saying "I shouldn't ever leave her somewhere and not show up." I told Laura I didn't want to get into it and I'd be home in awhile.

I pulled off the freeway and ate dinner at McDonald's. I was relieved she was safe and knew I had to get this going faster than ever. I had to get her moved into a safe environment ASAP. I was done with this chasing around, driving around, trying to believe she could still drive from point A to point B to meet me places. This was a big revelation for me and for her: Life was about to end as we knew it.