Marge. Sept 24, 1935- March 22, 2016

Alzheimer's won. It was a predictable outcome. There is no cure. The pain of my mom's death this week was overwhelming. With life comes loss and sorrow but man this is something I've never felt before. Her fall I wrote about in my last post did something to her: She never recovered. Never walked again. Never really spoke again. Just went downhill so fast her passing really took us all by surprise, including the care givers.

Watching her die over the last two weeks was brutal. It hurt so bad every time I saw her. Emotions ran deep; hurt, regret, remorse, anger, shock, pity, mercy. It ultimately had an outcome I didn't expect: I spiritual awakening and message from God that absolutely blew me away. Sure, in moments of extreme grieving we tend to turn to God and prayer. I did, many times. And I believe He answered my prayers and at the same time accomplished his mission: draw me closer.

So many things happened during her final days, the days leading up to the funeral, at the funeral and after her burial. ALL those events could take up many new posts. But needless to say, when you see your loved one suffer, die, and laying there in a casket, most people with any heart try to believe there is an afterlife. I chose heaven. I either had to believe she went back to a piece of dirt with no soul or her years of believing and helping the church she attended and her telling me not too long ago she believed in God and Jesus, were about to pay off.

The image I had as I laid in bed the moment before the phone rang with my sister telling me she just died was one of miracles: I saw her face and she said "Everything is ok now." Spirit and soul released from her decaying and now lifeless body. Taken to heaven to rejoice with God and other souls. For me, this was the path I chose and continue to embrace the past 6 days. I've been a believer of God. I've been wishy washy on Jesus. And I always hoped heaven is real and that one day I'd go there. Most people believe this.

I'm all in today, Easter 2016. Jesus Has Risen. My mom is in heaven. My story ends.

=================================
Eulogy I presented during her funeral-

Thanks everybody for coming today. It’s been a stressful couple of weeks for our family but we all came together and with the many prayers and words of encouragement from so many people we have arrived together to both mourn and now celebrate my mom’s life. Imagine the celebration right now going on in Heaven as she’s been made whole again and is with all the people who have passed through this world to eternal life.

Her Christian faith was renewed when she met my stepfather LeRoy and became active members at Christ the Servant Lutheran Church here in Waukesha, involved in Sunday school and she was an usher. and Joy Community Church in Arizona, choir, Sunday school teacher. She had true faith in God and Jesus Christ.

I did a bit of research on how Lutheran’s approach dying and funerals and put together the following biblical readings and prayers:

Romans 6:3-5

3 Know ye not, that so many of us as were baptized into Jesus Christ were baptized into his death?

4 Therefore we are buried with him by baptism into death: that like as Christ was raised up from the dead by the glory of the Father, even so we also should walk in newness of life.

5 For if we have been planted together in the likeness of his death, we shall be also in the likeness of his resurrection.

23rd Psalm

The Lord is my shepherd; I shall not want.

2 He maketh me to lie down in green pastures: he leadeth me beside the still waters.

3 He restoreth my soul: he leadeth me in the paths of righteousness for his name's sake.

4 Yea, though I walk through the valley of the shadow of death, I will fear no evil: for thou art with me; thy rod and thy staff they comfort me.

5 Thou preparest a table before me in the presence of mine enemies: thou anointest my head with oil; my cup runneth over.

6 Surely goodness and mercy shall follow me all the days of my life: and I will dwell in the house of the Lord for ever. Amen

Revelation 21:1-7

21 And I saw a new heaven and a new earth: for the first heaven and the first earth were passed away; and there was no more sea.

2 And I John saw the holy city, new Jerusalem, coming down from God out of heaven, prepared as a bride adorned for her husband.

3 And I heard a great voice out of heaven saying, Behold, the tabernacle of God is with men, and he will dwell with them, and they shall be his people, and God himself shall be with them, and be their God.

4 And God shall wipe away all tears from their eyes; and there shall be no more death, neither sorrow, nor crying, neither shall there be any more pain: for the former things are passed away.

5 And he that sat upon the throne said, Behold, I make all things new. And he said unto me, Write: for these words are true and faithful.

6 And he said unto me, It is done. I am Alpha and Omega, the beginning and the end. I will give unto him that is athirst of the fountain of the water of life freely.

7 He that overcometh shall inherit all things; and I will be his God, and he shall be my son.

APOSTLE’S CREED

I believe in God, the Father Almighty, Creator of Heaven and earth;

and in Jesus Christ, His only Son Our Lord, Who was conceived by the Holy Spirit, born of the Virgin Mary, suffered under Pontius Pilate, was crucified, died, and was buried.

He descended into Hell; the third day He rose again from the dead;

He ascended into Heaven, and sitteth at the right hand of God, the Father almighty; from thence He shall come to judge the living and the dead. I believe in the Holy Spirit, the communion of saints, the forgiveness of sins, the resurrection of the body and life everlasting.

Amen.

THE LORD’S PRAYER

-------------------------------------------------------------------------

Memories of Mom

My mom will be remembered for many things. And I can’t think of one that isn’t good. I can surely remember certain times way back when where certain people did certain things that didn’t quite meet my mom’s approval and that certain person usually was taught a lesson about how my mom viewed the world. Funny thing, mom’s are always right. She was a simple woman, uncomplicated, who enjoyed the basic pleasures of life, family, laughing and was pure in her thoughts. I’ve asked God to take away my rough edges and make me a smooth stone like my mom.

Let’s lighten things up a bit. Let’s celebrate and compare notes and memories....

Chocolate & Ice Cream

• If you haven’t indulged in the chocolate treats, please do. Go slow. And savor the sweetness of life as it melts away into your body.
• Custard at Kopps was always a viable alternative to any “real meal”. Because of the gene pool it’s rare I can go one day without some type of ice cream treat. My daughter Adrianne has the same gene passed down from her grandma.

Desert sunsets & Palm Trees

• Maybe it was being born in California that drew her back to the Valley of the Sun, but Mom and LeRoy spent many years in Sun City Arizona. One of my best memories is when I went down there to pack her up and move back to Wisconsin. After a busy day, we went out on her patio and watched the sun go down. It was a beautiful hot desert night. The palm trees were quiet. We sat there for at least an hour or two talking about our lives. It was really a special time together.

Homemade waffles the old-fashioned way

• Christmas morning was what I can remember when Mom would cook these up. She was old school---Bisquik, eggs, milk with Crisco.
• While I didn’t use Bisquik, Adrianne and I just had homemade waffles the other day. The tradition lives on.

Mom’s special meat loaf, baked potato and corn

• I remember having to run home from school to put the meatloaf dish in the oven she had made up in that morning. 350 for 1 hour.

Uncooked chocolate chip cookie dough- licked fresh off the beaters

• Amazingly, my sister and I are still here and I can’t remember ever getting food poisoning. So much for food warnings!

Steamed broccoli with mayo

• Not sure where this came from but we still eat it this way at home and Laura likes it.

Great tuna fish sandwich with diced pickles, mayo and yellow mustard

• Does this need any more explanation?

Her bad back, days in the hospital with “traction” weights hooked up to her

• The Estes Park trip in colorado that ended up with her in the ER when her back gave out.

P.s. Thanks again for the genes as both me and my sister have chronic back problems

She paid attention to the little details

• Her house was always spotless and I think LeRoy was a big driver for keeping the house organized

In the morning, sitting quietly in a chair with a hot cup of coffee

• I like mine pretty strong and I usually had to dial it back a bit for her when I made it.
• You know Mom I’m a coffee snob and never really approved of the K-cups

She was a medical transcriptionist for years at Waukesha Memorial Hospital and could spell words like

Sphenopalatine ganglioneuralgia

P.s. this is the name of an ice cream headache

Last but surely not least---

Happiness found with LeRoy. Re-united once again in heaven... with our Lord Jesus Christ.

Reflection and contemplation are good things for us to engage in, especially in times like these. Losing your mother or anybody you love teaches us about our own life here on Earth. We ask ourselves what we could have done different; mainly looking at our shortcomings. But, we’re all human and fall short of the glory of God. Jesus said it.

My mom dying has helped me become a better person. I feel God’s will was done so he could draw me closer to Him. Acouple weeks ago I asked my mom if she believed in God and Jesus. She looked right at me and said yes. I believe there is a place called Heaven. I believe my mom is now in heaven.

What is heaven like? Here are some biblical facts about heaven. It is …

• God's dwelling place (Psalms 33:13).
• Where Christ is today (Acts 1:11).
• Where Christians go when they die (Philippians 1:21-23).
• The Father's house (John 14:2).
• A city designed and built by God (Hebrews 11:10).
• A better country (Hebrews 11:16).
• Paradise (Luke 23:43).

What the heck are we going to do when we get to heaven?

Here are five things that will occupy us in heaven. We will …

• Worship without distraction.
• Serve without exhaustion.
• Fellowship without fear.
• Learn without fatigue.
• Rest without boredom.

My mom believed in Jesus and knew the only way to God and heaven was through Him. I believe her spirit and soul will live for eternity in heaven.

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.

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.

Christmas memories

It's hard to remember to update this blog! And to think it's primarily about my mother who has Dementia and Alzheimers. Its her memory that's fading. Whatever.

It's Christmas 2012. My mom is still an active part of the family get-together. She can still interact with everybody. She doesn't remember everybody's name all the time, but she did pretty good this year. Her biggest concern was if I/she remembered to hand out the Christmas cards/money gifts to the 5 grandkids. I did remember, and that means she remembered.

She still eats good, can still laugh at things, though she takes my dry sense of humor to heart and thinks I'm serious when I'm just trying to be funny. She misses my stepdad who died 5 years ago. She says Christmas is the toughest time. I think most people share this emotion when the loss of a loved one is magnified.

It's all about family. Trying to remember to be "there" more often than I might like. I think most families are a bit dysfunctional in their own special way. Lots of stories are always shared about how this person does this, or that cousin did that, and how "I'll just figure out how to suck it up for a couple hours when we're over at __________ house. (Fill in the blank with the obnoxious family members). But when you're laying in that box (or urn) dead to this physical world, who do you think is going to be at your funeral? Probably the only people that matter: Your family. Accept it's too late to say you're sorry or wish you would have said "I love you" more, to your mother, father, spouse, child...

Christmas is full of memories and traditions. Savor the moments.

Another Day Gone By

Imagine not knowing what day it is?

When I go on vacation I really want to forget what day it is and just relax. Unfortunately I have to remember when it's time to pack and go back home. Now that sucks!

So many things we take for granted: Like waking up and knowing what day of the week it is, what month we're in, and the year. My mom is having a really hard time with that. Stage 4 Dementia. She has a big printed calendar on her kitchen counter...but she doesn't know what day it is when she looks at it.

So we bought her a digital clock that has a calendar feature; day/month/year. Just for today, she can look at it and know, not remember, what day today is. She puts an X on her printed calendar marking another day gone by and knowing that she is losing her memory.

It's Monday, October 22. I know that for sure because my computer calendar shows that. I guess it's right. The TV news told me that too. For the working world, Monday's suck. As fast as time goes by right now, Monday is great. I've got a second job interview this morning. It could be a really great Monday, October 22, 2012. Do you remember what you did last Monday? You probably have to go to your calendar to jog that memory....

Losing It

Many days pass. Today Mom called me and said "she doesn't want to lose her mind." What a sobering thought: Losing it. She works with a therapist to help her with cognitive issues. Simple things like word recognition, association, counting, memory. The things we all take for granted every day when we wake up and the wheels start to turn. We all seem to have days when it feels like we're losing it. It's a common phrase. Those bad days when everything is coming at us at full speed and our minds are on overload...and we forget a couple things, or misplace our keys, or just feel overwhelmed with life. And then, tomorrow comes.