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.

Memory Care Here I Come

The day arrived as any other day would. It's summer. Beautiful blue sky, warm temps. It's July. Or is it August. What day is it? What city are we in? What planet do we live on? That last question was posed to my mom. Her answer....the United States. So it is with Stage 6-7 Dementia. That flavor of Alzheimer's that hits you hard. And takes away the only thing that makes up your life: memories.

It's been about 5 years to the month since I first started this blog. Hell, I forgot to post many of the most important stories. But today is a big day. I'm moving Mom to the memory care area at Harbour Village in Glendale, Wisconsin. I can honestly say I don't think she'll live 5 more years.

My mother-in-law stayed at Harbour House, which is the quaint name for memory care at Harbour Village. I think it's one of the best in our area. With an entry price of $4900 per month, I believe it's reasonable. I didn't shop around. I heard what many others are paying. Just the other day a friend of mine said his mother is in a place in Chicago at a whopping $10,000 per month! Now, she needs advanced medical services too, which are extra, no matter where you go. At Harbour my mom's bill will be $500 extra per month for medical services. But at what price, life? For our family, we have the money to go the distance, whether that's good or bad, I don't know.

When you see some of the residents, I'd say it's not living; it's existing. Waiting to die. Many don't even know it. Their brains are so deteriorated from the disease they don't even have the cognitive reasoning to know they're dying. But hey, let's spend thousands of dollars a month so we can watch you wither away in front of our eyes. Because that's the right thing to do? Memory care. If you have no memory, what are they caring for? The more I write, the more it makes me wonder what the hell am I doing?

I asked my mom what she would want me to do if she reached the advanced stages of dementia. She said, "Kill me." And while I agree it could be a merciful thing to do, I have to let God make that decision. Plus, would I have the balls to actually do it? Her suffering isn't that great, yet.

A friend of mine, his wife and I moved my mom out of her two bedroom apartment into the "room". It's a studio, with a toilet room, a closet and a window. The exit doors are locked. Code access only with assist from the staff. Family does not get the code. Residents don't get to go outside unassisted. The courtyard is fenced, with no gates. It's kinda like a fancy prison. With Dementia as the warden. You don't even need to misbehave to receive more quarantine punishment. The disease will take care of that all by itself.

So, we're all situated now. New mattress pad to soak up the pee. Smaller bed. 1/10 of your clothes. Memories will be made at your new home, Mom. The finality of it all hits you: This is where you will die. Call it cruel or morbid thinking. But it's true.

Early Arrival

My daughter was involved in her school concert this past weekend. My mom was going to come to hear her sing. Over the course of the last week, she asked me, and I told her about three or four times that is was Sunday and to show up at my house around 3pm. She called on Saturday morning to confirm, again, what time she was supposed to come over.

The weather was pretty nice for March 20th, so I went for a walk in the early afternoon. When I was coming up the street I noticed my mom's car in the driveway. What was she doing......here? I quickly surmised she got her days wrong and was here on Saturday instead of Sunday. When I came in the house she was very apologetic, saying she could leave and calling herself stupid over and over.

Of course she stayed. In fact, for some reason she brought a suitcase for an overnight stay. The plan was to go to the concert and then go home before it got too dark (she doesn't like driving after dark). It all worked out, all of us went out for a nice Italian dinner and came home for some NCAA March Madness. At least I enjoyed that part!

On Sunday, I cooked up some French Toast and then her and I decided she should try her hand at oil painting. Not bad for a first time artist. She was able to stay focused through the whole one hour event, and it felt good for me to see her do this. After we got done, I paused and got a bit choked up thinking that there won't be many more times I will be able to share a moment like that.

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.

On the Road Again

Today, I invited Mom out to the house for dinner. The challenge was if she could find her way by herself...given my directions. Hurray! She did it. One small step for man, one giant leap for Mom! And she made it back home without incident. It made me feel good, I hope she felt the same.

Earlier in the week I went over to finish doing some decorating and she informed me she stopped using the Exelon patch and that she didn't have a memory problem. She also said she started having the side affect of diarrehea, which can be common with these drugs. I told her it had been almost two months on the patch without that problem and it was just something she ate. The bottom line is she stopped using it. I insisted she call her old doctor and let her know what was going on. She did and has been prescribed with an alternate medication, I can't remember the name of it.

Big week ahead with her 75th birthday party next Saturday and her 85 yr old aunt coming in from Portland OR.

Day Threeteenth

My mom got back from a long 4th of July weekend with my sister. She called me to say she has the Exelon patch on and she has a terrible headache. She accepted the fact this is a side effect. I'm hoping this is the extent of it.

She remembered several events of the weekend, but couldn't easily recall who was all there. She did remember an event from last week (5 days ago) that involved my daugther, Adrianne. In detail she brought up the TV show she was watching that Mom didn't approve of. I told her things have really changed since she was a kid, and cable TV gets away with a lot more stuff that borders on "adult content". She felt it was inappropriate. Good: at least she still has morals!

Day Twoteenth

I'll have to fill in the history gaps as I go. My hunch is this will be a long and painful journey.

My mom had finally decided to go to her doctor for an evaluation. We had been asking her to do it for weeks, but no luck. Last week she told me she woke up and didn't know where she was and was scared. Magically, the next day she made the appt with her Dr. During that app't the doc ran a quick memory test and concluded there were some signs of mild to moderate Alzheimers. She will be going in for a CT and blood work next week.

The dr had prescribed Exelon patch. I only found that out because mom said that "nothing's wrong and my memory problems are mild." I didn't buy it so I called the dr directly. The nurse told me about the Exelon script, of which mom mentioned nothing. When I saw her next I asked about what scripts were written at the appt. She did not remember Exelon. When I mentioned this, it jogged her memory and she did say she remembered something about that. I asked her not to get mad at me for calling her dr. I told her I'm just trying to look out for her own good...and said I love her.

She left my house to go home and then called to say there was no Exelon script sitting there to be filled. I called the dr back and found out it was called in directly to the pharmacy...and mom was supposed to go pick it up. During the call she also mentioned that she felt mom was borderline MODERATE, not mild. It took about a minute or so, but I felt this wave of anger and sadness sweep over me. I pounded on the car and felt like crying. I know what's coming. I've seen people die from this. My daughter was with me so I held back the tears. Shit this sucks!

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...