Saying Goodbye

So, what could be harder than saying goodbye to your Mom.

Actually, thinking that you can make it through and that you'll be ok when the time comes.

My mother passed away on June 12, 2006, 9:00am. Pretty much, we knew it was coming to that, she had reached a point in her life and health where Hospice needed to come in and take over care. From that point on, you know that loved one is on their way out. But out could be days, weeks, months. It doesn't always mean tomorrow or even right away. It just means, that their condition has reached a point to where there is nothing more the medical team can do for them, or that the dr can do. No other treatment that can be given that could or would make a difference in their recovery. Why? Because they won't recover.

Mom had reached that point. And as much as I knew it was coming, thought I was going to be ok when it happened, thought I was ready, .... I was not.

I had just arrived at work, settled in, turned on my computer when the phone rang. Caller ID just kind of throws at you who is calling. I saw the Hospice Center name and knew within me, this was the call. It was too early for the nurse to be calling me with a routine update. I answered only to hear the nurse say she had some sad news for me, my mother has passed away in her sleep that morning. She had not suffered any pain.

It was like a shot in the heart. What happened to all that strength I said I had, that I told my mother I had, that I had told God I had and would hold onto?

Where was it now? All I could do was think about how I can to get to her, I had to say goodbye. I "needed" to say goodbye.

I called my husband, fell into an emotional mess on the phone, sent a one line email to my dept that I was leaving, then left. One gal walked me out and it was all I could do to keep from just falling apart completely.

I felt numb, hurt, devastated, confused, scared, lost, left alone. I had my family, a loving husband, three great kids, and five of the most wonderful grandchildren, one sister, yet I felt absolutely alone, like I had no one now.

My dad had died when I was three, now my mother was gone. I was alone.

I knew she was so happy now. Her health had been restored, she standing at the feet of Jesus and was reunited with the love of her life. But my heart was broken. Broken into so many pieces. I just wanted to cuddle up in some big easy chair and not get up till all the sadness passed. Could I do that? Could I just sit till it all went away? Why not? Because life goes on and I had to go on with it.

The heartbreak was so painful. Saying goodbye was so hard.

But.... I promised my mother I'd be ok. That I could be ok because she had taught me to be strong and I would make it through the loss, but I would never forget how much I loved her and missed her.

Memory of Mom

I’ve started a journal of Memories of Mom. Something I wanted to so I would never forget anything about her or the times we shared together.

In the midst of this, an entry – a dream I had, July 13, 2006.
A little background – on the one month anniversary of Mom’s passing away, July 12th, I had cried a river of tears, prayed for her to be back where I could hug her and she hug me. Although I didn’t want her to be back to where she was, I wanted her healthy and back to the mom that I remembered, that I could talk to, laugh with.
Thursday night, I had this dream. Mom came back. We were at this big house, atop of a cliff overlooking the ocean. It was big, I think two stories. I don’t know about the weather only that it was not hot, but not cold. It wasn’t cloudy. It was clear.
Mom and I hugged and kissed and then I proceeded to take her around to see everyone, (although I have no idea who “everyone” was). She was happy, smiled shook their hands.
All these people seemed to be just as happy to see her and she was to see them, welcoming her home.
The room was all wood, walls, floors. People were gathered on the outer edges, some standing, some sitting. There were a lot of people. Everyone was so happy.
Mom had her hair done, no oxygen tube, no wheelchair, was walking just fine all by herself. Suddenly we were at my home, just coming into the house. I turned to John and said we needed to go get some more Flintstone vitamins, because my Mom was back. Then I commented that I didn’t know how we going to cover the cost, I had discontinued Mom’s Social Security because she had died.
(Shocker – reality hit!) As I said those words, John looked at me waiting to see how I was going to react. I looked at him repeating, my mom died. But she’s back, she came back. I turned around and there was no one there. I started wondering if I was losing my mind, seriously.
At that moment I was transported back to the “big house”. I was standing outside with a card in my hand to mail to mom. It was quiet; there was no one else around, no noise coming from inside the house. The awesome foam capped waves were falling up against the rocks below the cliff.
I was thinking, where should I mail this to? Oregon? I didn’t have anywhere to mail it to. There was no address for mom. She was gone. She had passed away. Holding the card up, it took flight and it was gone. A breeze just swept it away.

Now I was alone, kind of in awe, a little sad, but more in awe of the whole thing.

When I woke, my first thought was I wanted to go back to sleep, back to my dream where my mom was. Then God showed me this –
He had just given me what I had asked for, time with Mom. Time with the mom I remembered, her health restored, back to how she used to be and surrounded by people that loved her. People that were so happy she was home, were so glad to see her, all the family and friends that had long passed away and were waiting for her in heaven.
This is where mom is, how mom is, and how loving God is.

Sparkle Girl pays mom a visit

This past weekend, we were watching two of our grandkids, StM and LB. StM is five and a half and LB is three.
On Saturday, my husband and I had to go to a memorial service, so a friend of my daughter's watched the youngin's for us.
After we got home, my husband dropped mom and I off then went to pick up the kids. when they got home, got in the house, my husband announces there is a Princess here. LB comes in wearing this blue, sleeveless, sparkling dress over her shirt and pants.
She informs me she is Sparkle Girl! putting sparkles everywhere. And trust me, she was not without truth. Because everywhere she went, everything she touched, ended up with sparkles; the floor, my clothes, the blankets, Grandpa's recliner........everything and everyone.
I was in the kitchen cleaning and she came in and hugged me again to get sparkles all over me. I asked her to go hug Grandma Curtis and give her sparkles.
(now this part is the main part of the story)
She goes over to my mom, who is sitting in her rocker as always, kind of dazed, she reaches over to give her a hug and my mom wraps her arms around LB and hugs her back, ever so sweetly. As LB lets go, I show mom there are now sparkles on her clothes. Mom looks down to see sparkles all over her pants and starts to smile. She liked all those sparkles on her and loved that hug LB gave her.
The visit from Miss Sparkle (or "the Sparkle Girl"), definitely made mom's light shine. I hope she'll come back and see mom again.

The Dollie Girl

Years ago, when mom was more mobil, able to get around without assistance and respond to questions and such, we would go shopping.
Sometimes, we would go shopping for her, to buy some new clothes. It was so much fun, cause Mom would let me pick out all kinds of things for her to try on. And even if she did not like something (which she would tell me after she tried it on), she would try it on. It was like having my own real live doll.
One day, we were looking for a Christmas outfit for her to wear to the Women's Gift Exchange at church. Oh we were having a grand time, her tyrying on all kinds of pretty holiday outfits. I told her, she was my dollie girl. Letting me try all these pretty things on her and her never complaining.
We ended up buying this real pretty black velvet skirt with a matching black velvet print sweater with the top sewn in. The outline of the print was in silver, so we bought her some silver earrings, a silver necklace and some pretty black dollie shoes. We got her hair done for the event. And I tell you, my mama was the prettiest woman there. truly. She just looked like a million bucks.
Well, just the other day, we had to go out so I dressed mom all up in purple; purple pants, a long sleeved lavendar turtle neck pullover, a beautiful purple, beaded button down cardigan, lavendar socks, purple bracelet made by her grandchildren and gold earrings. She looked so pretty. Oh, and real clean white tennies.
I have to say, my mama just looked so pretty. Even her nail polish was lavendar. She outdressed me, I can tell you. And I'm the one who dressed her!!! LOL!
She truly is my dollie girl. And I love dressing her up and taking her out. And although she is not real mobil anymore, her head is down mostly, and she kind of looks right through you for the most part, she is as beautiful a woman as they come. Mom has an inner beauty that shines right through, especially when she smiles. It's like magic. When she smiles, you can't help but smile too.
Gonna have to take a picture one day soon, of my dollie girl. Then ya all can see......just how pretty a mama I have.

Through the Wild Woods

Where do I start today? It's funny, you think you know it all, where you are, where life will lead you, what your purpose is, what the plan is and all that, then......all of the sudden someone takes all the knots out of your rope!
You feel as though you are hanging on for dear life, to the very last knot, and one more move and it's going to unravel you will fall or....your hand will slip and fall...or....but for whatever reason, God never lets you go beyond that last knot.

(this all does relate to life with mom, bear with me)

Mom's dementia seems to be progressing at a rate that I'm sure I was ready for. Although I knew it was coming, I just didn't see the physical personal challenge that was ahead. For mom, her biggest challenge is getting up in the morning, getting from point A to point B, eating (getting her to eat), staying awake.....ok, so you can see she has many "biggest challenges".
It is much harder and takes much more effort for her to get around the house. Even the short walk from the living room, through our very small spare room to my bathroom....you might as well be asking her to walk around the block.
While our front bathroom has been under construction, we have needed to devert her to using our bathroom. Each day is a little harder for her. Her legs just don't want to move. I find myself doing much more lifting with her, out of her chair, off the toilet, out onto the front porch, getting into bed.
We have found her several times now, on the floor in the mornings, beside her bed. Unable to tell if she fell, slipped off, or just decided her bed was no longer comfortable. In any case, she could not get up and I could not lift her from that point, straight up from the floor.
Now I'm researching hospital beds, headrests for her wheelchair, ramps for the front porch, even wheelchair access equipped mini vans ( I know, this may be over doing it, but I like to take her out of the house and down to the marina sometimes, or to the mall or to church...) Now it is very hard for her to walk just from the front door to my car which is parked right in front, on the street. I'm growing tired, weary, and mom just keeps on going. She may not be dancing on tables, or doing the jig, but she is living the best she can.

And so this is where I feel God is taking me on a journey with my mom, through the WildWoods.
Where will it end? When will it end? I have not an answer to either. Perhaps when God believes I am ready to handle what is at the end. I've thought many times I was ready, but anytime Mom gets sick or something, I find myself is a pool of tears as I see myself having to say goodbye to her. So, maybe I'm not ready.
I JUST DON'T KNOW!!! I don't, I don't , I don't.

One day, I will pass through these woods.....but not today. One day we will both, my mom and I, pass through these woods.

Looking through the mirror

Years ago, when mom was first diagnosed with dementia, I really felt it was my calling, my place to take care of her till the end. My family and I, including my sister, went through a lot of uphills and downhills trying to work out the details and arrange in-home care while I work.
Today, I can't say the challenges are non-existant, but I have gotten a little help. Help that was always there, I just had a hard time asking for. Still do somewhat, but I'm doing better.
Which brings me to this story I read on the www.alz.org website today. It is so me and my husband. Obviously I'm not the oldest nor was there five of us. But the personality of this gal, is kinda like me (referring to the stubborn trait). I won't elaborate on that. I'm sure my husband, my sister, my daughter, my sons.....will all want to though. LOL!!
I pray calling for help will not always be a hard thing for me, or any caregiver.
Enjoy.

Asking for help

Caregivers do not always ask for help. Sometimes it takes another person in the family to take that first step.

“I don’t know what I’m going to do,” Jim* says to the Alzheimer’s Association care consultant. He and his wife, Jeanne, moved her father into their home after he was diagnosed with Alzheimer’s disease five years ago.

Her father has always been an easy-going guy. But lately, he has refused to put on his pajamas and go to sleep. Jim thinks his wife is overwhelmed with caregiving responsibilities, but refuses to accept that she might need help. He is concerned about her emotional state as she cares for her father and their three school-aged children.

“Jeanne is the oldest of five children,” Jim says. “She was always in charge, and I think she likes it that way. But this time, her stubborn refusal to get help is going to be the end of her. She is tired, depressed and cries all the time. What can I do to help her?”

Next steps

The care consultant found out that Jeanne’s brothers lived nearby, but that they do not know how difficult things have become because she hasn’t told them. Jim said his wife believes it is her job alone to take care of their dad.

The care consultant discussed several ways Jim could help his wife including arranging a family meeting so that they can tell her siblings what is really going on with their father. Such a meeting can help family members learn how important it is to share caregiving responsibilities and make decisions together.

“I feel so much better after talking to you,” Jim says. “ I’m going to do whatever it takes to get Jeanne to call your Helpline. Wait a minute, my wife just walked into the room. I told her I am talking to the Alzheimer’s Association. Do you think you could talk with her, too?”

The care consultant was more than happy to talk with Jeanne and thanked Jim for calling. Out of concern for his wife’s well-being, Jim reached out first, now making it possible for his wife to ask for the family’s help in caring for her father.

* The names of callers have been changed to protect their privacy.

Make the first call
1.800.272.3900

Memory Walk 2005 - My Reason to Hope

October 22, 2005 - The Annual Memory Walk for Alzheimer's.

This year was a year of giving, totally. I started my campaign with a prayer and one thought in mind, raising money to help further the research in finding a cure for Alzheimers. It is on behalf of my mom that I participate in this event.

The day of the walk was gloomy, drizzly. My husband and I wrapped my mom with three jackets and a blanket, and a hat, and pushed her the 3miles in her wheelchair round the Hollywood Park Race track. My daughter and her three kids joined on this walk. It was awesome. Mom was fine with it, smiling, no complaints, loved the coffee (didn't like the hot dogs).

It's amazing how giving people are, especially when the cause hits close to home; a mom, dad, grandparent, other relative, close friend. And what's more, doors open. Doors to avenues of support and sharing. Sharing with others your experiences, hearing theirs, gaining ideas for dealing and coping with the challenges of caring for a person who has this disease.

I have a friend who I met through an Alzheimer's forum. I can't tell you how much it has helped me in talking with her, as she went through years of this disease with her Dad.

After someone finds out you have someone who is fighting that disease, it is like they are drawn to you and you to them. Suddenly, you are no longer going through this alone. You have others who are going through the same or have been. Just having that listening ear, that support and understanding was enough. But there are bonuses because each has their own ideas or ways in which they have dealt with certain challenges. By sharing these, we help each other.

But the giving - which is what I wanted to note here, knocked my socks off. I prayed for God's leading in this event prior to sending all my emails asking for support. Let me tell you, he brought the multitudes.

Oh ye (me) of little faith, I started my campaign with a goal of $800. By the day of the event, I had raised my goal twice and raised over $1300. This may seem like a drop in the bucket, but it was such a great accomplishment for me and overwhelmed me at how people responded. I expected nothing when I sent the emails, except that those who were called to give, would.

Mom is my reason to hope. And although at the stage she is at in her dementia, there is no turning back, ....there is hope for others. And her heart for caring for others, lives in us, her family. And for that reason, we continue to hope and support and move forward in our fight for a cure.

What IS "life with mom"?

In the event you may wonder, what is this "life with mom blog" all about? What is the big deal?
Well, it isn't a big deal, it is just a place to store the memories of my life with my mom. My mom, who at 90 years of age, is in the severe stage of dementia.
My mom, who used to sing, play piano, galavant all over the city, take care of my great aunt when she was bidridden, who used to watch my kids, crochet, knit, cook the best fried chicken and mashed potatoes I've ever had in my life.
My mom, who wouldn't miss taking us to church on Sunday or any other church event that had to do with family or kids. My mom, her life was us, my sister and I.
My sister and I still have those memories, and mom does too, but they are locked up tight somewhere in her mind where she can't get to them at any given moment.
Other things are locked up there too. Things like....how do I eat with a fork, how I manage the bathroom routine, how do I wash my hair, how do I write my name, what is my granddaughter's name? Who is that nice man that helps get me into bed when I can't get do it myself (her grandson Nathan)? Who are all these kids and their kids, faces I recall, but names I can't remember.
Where is my husband? Where is my home, I need to go there.
This is life with mom. A life where we have changed places, changed roles. A life where mom no longer takes care of us, but we take care of her and help her to make it through another day of being with us, making memories.
This place, this point of logging stories and experiences in sharing this part of Mom's life........that is what this is all about.
And it's about all the love. All the love she has brought into our loves, unconditional, never ending, always giving.
Even now, in a moment of realization, she'll often whimper with words of sorrow for all I do in helping her, or other family for taking care of her. She can't understand that we do it because we want to, because we love her and it's her turn. Her turn to be taken care of.
And it's hard, it's hard and heart wrenching for my sister who can't be with her often, because we live miles apart and mom isn't really up to traveling anymore.
But you know, that is the miracle memory part of mom. Sometimes, when I talk to her about Shari, she'll say she doesn't remember her. I'll remind her who she is and that she probably just doesn't remember for the moment because Shari is not here.
Mom will say....yes, it's probably because I don't see her all the time. See, once in awhile, God will give her loving recall.
She'll never forget us, really. Sometimes it is just hard for her to weave through the files of her heart felt memories and bring them out.
So for this, I have, .....we have.....the Life with Mom blogspot.

A Smile Goes a Long Way

It's amazing what a natural smile can do. I'm sure you've heard all those sayings about giving a smile away, sharing a smile with someone, etc....I have to tell you, today, it happened to me. I was the one who received the smile and it has totally put me above the clouds.
I had to get mom up early this morning to go in for a chest x-ray (another story, another time). She was so sound asleep, I hated to wake her. It was cold all through the house, as is when you have hardwood floors, and she was snuggled up in her blankets and you could tell, was not ready to start morning.
However, I had to do what I had to do, and waking her up was the task at hand.
So, I pulled back the window cover and called to her. After several efforts, with no welcome response, I was beginning to rethink the whole idea of taking her in today for this x-ray. Went to the other room to mull over the idea of putting it off till Wednesday, just when I heard her talking.
Went back to her room , to find her working hard to get herself into a sitting position and get out of bed. I was like, "ok then, let's go!" She looked up at me, smiled and the first thing she said was how pretty my skirt was. (since when does she notice what I'm wearing). Well, she did today, and the floral print caught her eye and I caught her smile. We did the whole bathroom routine, got her dressed, were on our way, and she was as spry as a.....well, you know.
At the hospital, we went through the whole routine, signing in, going down to x-ray, more registering, then into the x-ray room. Having to take off her nice warm pullover and put on a gown, position her in front of a hard plastic board, and try to get her to understand she pretty much needed to make that board her friend and hug it...hehe...then a sideview, then we were done.
No complaints from her, no whining. She was an absolute doll. I stopped to put fuel in my car on the way back home, with another sidetrip to the carwash.
She was still ok. Stopped for coffee, then went home.
She was so "with it" this morning. And if you know my mom, you know being "with it", doesn't happen all that often anymore.
At home, we changed her top to something a little bit cooler (the sun was starting to show signs of a plan to be out all day), helped her to her favorite rocker, then gave her that loved cup of hot coffee. There was no tearing it away from the death grip she had on it either. Too heck with the lemon cake I bought her to go with it.
I kissed her goodbye, as I had to work. She still had that smile. And I felt it all the way through my soul. I didn't my vente latte full of caffeine to be up today, mom had already lifted me there with her smile.
About my mom, truly, it doesn't matter how old she gets, my mom has the beautiful, warming, loving smile you've ever seen.
And today.........................that smile is going a very long way............God love her!

Somedays Just Aren't

Mom is such a lover really. She means never to anger you , hurt you, or make things harder on anyone else. She'd take care of your every need if you would let her and ........if she could.
She is as sweet and giving as mamas come.
There are somedays, where there aren't any funny stories to blog, silly things that mom did or smiley moments to ponder on. Somedays are rough and challenging for both of us.
Days when she can bearly move to walk from her chair to the dining table, can hardly lift her head so I can see her face. Some days she can bearly stand up straight enough to see the rest of the world that goes on around her.
During these times, it seems it is harder to get her to eat, to simply open her mouth up enough so I can get the food in. At times she'll attempt to feed herself, but even that doesn't last long. It is like she just gets tired of the whole ordeal or loses interests or even forgets. Yes, forgets that she is supposed to eating. That the plate in front of her, is FOR her, filled with food that we HOPE she will enjoy.
Then of course, here I come, in all my bratty glory and scold her for something simply because I have lost all patience and her tears start to flow. Oh Lord, how that quickly brings me back to a softening tone, a kinder heart and back to the place where my mama needs me. That place where I always need to be for her. A place of understanding, compassion, love constant and without conditions or limitations.
That part of me is always and forever there for her, just on somedays, my evil twin gets lose and I allow myself to become challenged and overwhelmed with the care involved in taking care of mom.
And why am I sharing all this with you................who knows.............maybe it's cause I ran out of wet noodles to hit myself over the head with.
Any maybe, beyond the "Somedays", I still have my mama's smile. I might have to bend down to see it, but she does have a sunshine smile full of love despite what might have happened earlier in the "someday".

Off to Day Care

Today is Mom's first offical day at Adult Health Day Care.

The original plan for getting mom to and from daycare, was for me to take her there, and for the facility to arrange a ride home.
Well, somehow the request got slightly modified, and while I was just finishing putting mom in the car, Secure Transportation arrived to pick her up.
It was an actual blessing in disguise as I was running late (this being a whole new schedule for me now). So we unloaded the wheelchair, oxygen tanks, backpack and mom. Put mom in the chair, snapped on the backpack to the chair, handed the extra tank to the driver and she was ready to go.

The driver wheeled her onto the liftgate then into the van. With safety straps he anchored down her chair in the front and back, then anchored her down. The only thing missing was the orange jumpsuit and the armed guard............hehehe. I watched till they pulled away. It was like sending my little girl off to school for the first time.

She had gone last week for her accessment, but this was the real, official, "on a schedule now" day. They will bring her home around 2pm. I told her to have lots of fun and that she could call me at work when she got home and let me know how much fun she had. Not that she will remember that, but I wanted her to know, at least for that moment, that I wasn't shipping her off to Buffalo and going to forget about her. She had a personal chauffer with her own limosine, that was going to take her to the center where she could play and have fun all day!

And off they went. Mom with her backpack that held a change of clothes, her wheelchair, oxygen tanks and all.

I've rescheduled for Secure Transportation to pick up and return home Mom from Day Care. I'll still get to see her off and wish her a good day as they will be there before 8am. I think this will work best for both of us.

You Oughta Be In Pictures!

Laugh till you cry they say.

On most days, it is very hard for Mom to stand up straight, to raise her head above her shoulders taking into view the rest of the world and all who love her. She is a vision of a loving little lady, bent over, working to advance from one place to another.
I nag her somewhat to stand up straight and lift her head, as I miss seeing her face and a couple of times I have bopped her in the head with my elbow when putting her pants on.
See her head is down, she is sitting, I'm reaching down in front of her pulling her pants on, leg by leg....you get the picture right..my elbow comes up and BOP! Hey, she smiles right after saying ouch, letting me know she felt that whack on the forehead.
Last night, sitting on the edge of her bed so I could get her into her pajamas, I asked her again, to please try hard to sit up straight and put her head up. I wanted to see her face and I very much wanted her to be able to see me. She would never see my face again, unless she lifted hers up.
Well, I guess she took my request literally and with much emphasis as just then, she raised up her face, framed with her fingers in an L shape on each side. Hysterical! Yes, I could not contain my joy and laughter. She was holding her head up and showing me her face alright! Even framing it for me so that I wouldn't miss it!
I couldn't stop laughing. My face hurt when I went to bed from smiling so long.
Leave it to my mama to elaborate on a simple request like "please lift up your head." It was a Kodak moment!