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.

Day Oneteenth

It hit me today as I was driving to work. I should try to diary the experience I'm about to embark on: dealing with my Mom and Alzheimer's. I saw the exercise posted as an activity for those who've been diagnosed, but I don't know how the hell they'll keep up when they forget how to type or don't know their name. So why not me? I'll keep the diary, a blog for today's times.

My wife's mother went through it- for 13 years, and died last year. Both my grandparents on my mom's side went through it, and both died from complications of it. Close friends parents have died from it or are going through it now. It's all around me, and now it's upon me.

It's been a year now since myself and my family first starting noticing a problem with mom's memory. It was a few of those funny forgetful moments that we all laughed about. "What are you talking about?" was the typical comment from us. I guess I need to provide a little history about her, her life leading up to this moment, and where we are today.

She'll turn 75 this year and is in pretty good health and a bit overweight. She takes what looks to be the typical dose of meds as prescribed by a myriad of physicians and her own volition: heart, thyroid, tylenol, vision, vitamins. Two years ago she ended up in the ER with a bowel obstruction and upon further review, cancerous polyps were found and surgically removed. So far, no other events since then. She's still good about monitoring pill dosages and remembering when she takes them and how many she took.

She lived in Arizona for the past 18 years with my stepdad, but he died three years ago and now she's decided to move back to Wisconsin permanently. This is her second summer back here and will be her first winter here in quite a long time (20 yrs?). It's the Summer of 2010, the grass is green, the days are wonderfully long. Mom lives alone in a condo about an hour from my house. My sister was close by, but recently moved about 30 minutes North. Her grandson moved into my sister's house, so he's still close. Other than him and his wife, we're all in the "bothersome" driving range to go to her house on a regular basis. Isn't it funny how parents become bothersome as we get older? Wonder what I was like at say, at 14...