Always and Forever

"Your Mother is always with you.

She's the whisper of the leaves as you walk down the street.

She's the smell of certain foods you remember,

flowers you pick, the fragrence of life itself.

She's the cool hand on your brow when you're not feeling well.

She's the breath in the air on a cold winter's day.

She is the sound of the rain that lulls you to sleep, the colors of the rainbow, she is Christmas morning.

Your mother lives inside your laughter.

She's the place you came from, your first home, and she's the map you follow with every step you take.

She's your first love, your first friend, even your first enemy, but nothing on earth can separate you; not time, not space...

not even death."

-Unknown



Nearing Home

Mom is nearing home. A process that we thought may take months, looks like it may take just days or possibly a week. Today mom no longer responded. The hospice nurses came several times today and told dad it would most likely be just a few more days. I'm in a stupor; wandering around the house not knowing what to do with myself. I vacillate between fight or flight; one moment ready to hit something and the next minute I want to run away to "someplace" safe. I'm just being honest here. I believe those thoughts and feelings to be part of the normal grieving process. Where I need to arrive at is surrender. My brain  knows that and my faith in God leads me there, but that selfish human part of me does not. As I said in the last post, this is what I want for her. I just did not realize how much it would hurt. But then Christ was intimately acquainted with that too. When Christ got to the home of his friends Mary, Martha and Lazarus and Lazarus had died the Bible says, "Jesus wept." According to the dictionary the term 'weep' means, "to express grief, sorrow or any overpowering emotion by shedding tears." Check. Did that today too. A dear friend "held me" over the phone while I wept.

In the previous post, I eluded to the "cocoon of Alzheimer's". That arose out of a desperate attempt to explain to my youngest daughter, Lexis then 9, what was happening to her Nanny and what would continue to happen. I explained that Nanny was a caterpillar and that Alzheimer's was like the cocoon that the caterpillar weaves before it can be transformed into a butterfly. I told her how Nanny's mind would become darker and darker until finally when the cocoon was complete that Nanny would no longer be able to talk and would just lie there. I believe that day was today. Then, at the moment that Nanny saw Jesus, she would emerge from the cocoon and be better and more beautiful than ever.  She would know how much she loved and how much she was loved. She would be changed and what we thought to be the end would actually be just the beginning; the beginning of her life eternal. Little did I know that several years ago, mom had discovered a Monarch butterfly just emerging from it's cocoon and showed both Lexis and Landon and patiently explained the miracle that was happening. The beautiful person who shared that with me yesterday had no way of knowing that I've always equated this process with the Monarch or how precisely I had explained it to Lexis. Amazing. God is amazing how he works and weaves this all together.

Last Saturday I got the wonderful privilege of spending some time with mom. Before I left, I went back into her room.  What propelled me there remains a "mystery", but obviously it was a prompting from the Spirit. Dad had started a CD of hymns and she seemed restless in her wheelchair.  I went toward her and put my arm around her. She laid her head against my chest and I just held her, stroked her hair and face and told her how much I loved her. The Old Rugged Cross was the hymn that was playing and I started singing to her. When the verse was over I asked her if she was ready for her crown and ready to see her mom and hold her baby girl. I could attest that it seemed like she nodded her head yes, but I truly have no idea if she did or not. But she was in the mood to cuddle. It was probably only a few moments that I stood there holding her, and it reminded me of a book that I used to read to my children. "I'll love you for forever, I'll like you for always, as long as I'm living my mommy you'll be." I used to tear up reading that to them, knowing that some day that would come true. Saturday that was my reality; and it was beautiful. I am blessed.

On a hill far away stood an old rugged cross,
The emblem of suffering and shame;
And I love that old cross where the dearest and best,
For a world of lost sinners was slain.
So I'll cherish the old rugged cross,
Till my trophies at last I lay down,
I will cling to the old rugged cross,
And exchange it someday for a crown.

It's Been Awhile.....

It's certainly been awhile since I've been here. Almost 2 1/2 years to be exact. Many things have happened since then; job changes, kids that have grown and changed and are now about to leave home, babies have been born and my mom has slipped into total darkness.  The cocoon that is Alzheimer's Disease has nearly finished spinning and enclosing her mind. 

I miss her. 

Part of not writing was the craziness that is my life with three children in about as many activities as you can imagine, but a bigger part still was that it simply became too painful to chronicle her deterioration into near total and complete darkness. On March 11, 2014 papers were signed and my momma was placed on hospice. She is nearing the end of her battle and will soon shed her cocoon.  This is what I want for her after all.... I think. I just don't look forward to the separation from her earthly body until we are reunited someday. That sounds really selfish as I type that. I don't want to hold her here, but I will miss holding her hand, rubbing her back and kissing her forehead. 

I have probably not mentioned enough about my dad. The man is worthy of sainthood, in my opinion. I believe most people go their entire lives without witnessing the type of love that my dad has displayed toward my mom in the last few years. It has been a thing of beauty to watch. What a blessing and a privilege to have a father who loves my mother so much that he would care for her like a parent cares for an infant; to the point that he was sacrificing his own health. Until January of this year, he cared for her in their home. After her second trip to the emergency department in less than a month it was time. As daughters, we thought the time had come long before that, but we wanted to respect his wishes to care for the love of his life as long as he could. It was so hard for him to realize that she would never occupy their home again and it broke our hearts as well. But mostly, I was relieved. She has had absolutely wonderful care and we are so thankful. We are also thankful that our parents had the foresight to obtain long-term care insurance. While still expensive, I cannot imagine how people do it without that. 

Daily, and sometimes multiple times a day, he goes to sit with her. She doesn't know who he is, but he knows who she is. He has tried so hard to encourage her to eat, but she no longer identifies food as a thing of pleasure and I believe her mind is no longer able to interpret hunger signals from her stomach. Chewing and swallowing is difficult and this is all a part of the end-stages of Alzheimer's. On hospice, we no longer have to feel the pressure to get her to eat. Food is, of course, still offered, but if she closes her mouth and refuses to eat, it's okay. She doesn't have to eat.  The hospice nurse has been wonderful; visiting several times a week to bring comfort, honor and dignity to mom and where she is in her life process. Gently they lead my dad through the process of saying good-bye. 

Savoring the moments is where I am these days.  When I rub her arm or hold her hand I try to memorize what it looks like and how it feels. Those hands who were so busy all her life and now sit idly. I had such an intimate moment with her a couple weeks ago, that I can't even speak of it here. For just  a moment God granted my mom clarify of mind, I believe, to tell me everything she would have told me (and all of us) if she had a mind that was well and two minutes to say everything she wanted. And then she gave me some instructions.  Instructions I will never forget and I was able to make her a promise. And then she was gone...back into the darkness of Alzheimer's. I was the recipient of a precious miracle from God and I will carry it with me always. 

I love her. 

We don't know how many weeks or months we have until her earthly body leaves us. But it's alright, because I know the One who does know. He preordained every one of her days before even one of them came to be. God loves her more than we ever could and He will gather her to Himself at the perfect moment and in the perfect way. It will be bittersweet. She has a daughter that she has never held and a mother she has not seen since she was 11. Parents, grandparents, aunts, uncles, cousins and friends will greet her there and what a joyous reunion that will be.  But first, she will be welcomed into Heaven by her Savior, Jesus Christ. The one who paid a debt He did not owe because we all owe a debt we cannot pay and that it is only through His death, burial and resurrection that we can have eternal life. As wonderful as my mother was and for all the "good works" that she performed here on earth, they could never be enough. We cannot "work" our way into heaven or just hope to gain entry because we did more "good" than "bad". It's gift that is offered to us if we just accept it; our faults and all. She would want you to know that. 

The Lady Who Runs the Restroom...

Laughter is the best medicine. Of that, there is no doubt. In the midst my my mom's declining mental capacity there have been, believe it or not, moments that have literally left us doubled-over with laughter; although often accompanied by tears. Recently, Sue and I decided that someday we would enjoy remembering some of the lighter moments during this journey. I hope you will smile, laugh and see the woman we all know tucked away in so many of these wonderful quips.


While showing me some scraps of material in the closet, "These have been here since I started working here.  I think I'm going to look for a new job." I told her when she found one to let me know, as I might want to work there too. Then we both laughed and laughed.


"I was talking to 'that lady'.  You know, the one that runs the restroom.  I told her that my grandchildren were here.  She didn't say anything, but she smiled and smiled at me." She said this when we were at the lake one day this summer. Just a week or two later while she and dad were picking Deb up at the airport she said something to this effect; "I just cannot believe that the same lady that runs our bathroom works here too!"


About her caregiver when dad goes to the farm; Beth - "It's so nice that she comes to help you." Mom - "I don't think she wants to help. She wants to be in charge."


A recurring theme for her is all the men that come to eat and how 'busy' she is making all this food. She conveyed to me that she was concerned that they would come for 'dinner' while she and I were gone. I said, "Mom, you know, I told dad that you are 82 years-old and you don't need to be doing all that cooking anymore. There are plenty of places to eat in town. They just need to go out." She replied, "Well yes, I suppose they could do that, but they like to come here because it's free."


To my sister Sue while they were getting in the car and driving; "Every time, I get in the car there is this old lady who is always watching me right outside my door here. (As she pointed to the passenger side mirror.)  If I smile at her, she will smile at me.  If I wave, she will wave back. Your dad always is telling me to quit waving at her!" Sue said, "Oh mom, that sounds just like something dad would say." Mom burst out laughing and so did Sue. They agreed that was certainly dad to a "T".


About accepting new things, "You know, I just have to decide that it will be okay and then I can adjust."


One day my sister Jean was scrubbing the kitchen floor. My mom said, "Oh, you can't do that! The lady that cleans does that and she will be so disappointed if you do it." Jean replied, "Oh I talked to her and she said I could do it today." Quickly mom shot back, "You're lying. She doesn't talk."


Whenever she sees her youngest Grandson, Landon; "You know, he is just the neatest guy! Here in the last year or so, whenever we come somewhere, he always comes to the door to meet me and helps me find my way. He is just so polite. You are just doing such a fantastic job with him."


Thanks, Mom. That means more than you could know. 


Enjoy the pictures of what was probably mom's 'last' Grandparent's Day with my kids at their school.

We love you Nanny! (Bailey, Lexis, Landon)

What was it like when...

Nanny and Lexis

Prayers Answered...And I'm Okay With That, Right?

Yesterday, my dad turned 81. Forty-two years ago yesterday, my grandmother (his mother) passed away after a long struggle with Rheumatoid Arthritis.  It just also happened to be my mother's due date - with me! It took another 10 days before I would arrive on the scene and they would give me the name that had also been hers; Elizabeth. She was so certain that I was a boy. But none-the-less, I'm sure she would have loved it that we share a name. Wish I could have met her.  Wish she could have held on long enough for someone to lay me in her arms, even just once.  Guess I just have to wait for Heaven.

Alas, I digress...So today, we went to one of dad's favorite restraunts for dinner to celebrate. It was wonderful to be together and celebrate. I think he really enjoys getting out and being with family. He gives more verbal indications of that, than he would have even a few months ago. I would imagine that it's rather lonely living with someone who now often does not seem like person you had lived with for almost 60 years.  Mom is declining. It feels sometimes like it is going way to fast.

One of the peculiar things about diseases like Alzheimer's is that you see a change and you adjust.  Then that starts to feel 'normal' and you find yourself thinking, "This isn't so bad. We can do this."  About that time, another big change occurs and once again sends your world into a tail-spin.  You fight to regain your balance and then the cycle begins again.  Right now we are in the tail-spin part of that cycle. Prayer answered.

Really??? How could that be an answered prayer, you may ask?  Months ago, I began praying that my mom would be able to attend and thoroughly enjoy my nephew's wedding in July.  In fact, I enlisted a small army of people to pray.  My mom came through with flying colors for the big weekend! It was such a joy to watch her that weekend, but yet bittersweet. The next "big" life event to occur will be my own daughter graduating from high-school. My dear, sweet mother may be with us still in body, but she will not be aware of that event in just under 3 years. I know that with all my being. I've struggled and mostly come to accept that, but it doesn't mean that I like it.

In my prayers I specifically petitioned God that she be able to be as "present" as possible for the wedding and after that?  I would lay down any selfish desires that I had concerning my mom and trust God. It's now been just a little over a month since the wedding and mom has changed significantly in that month.  It breaks my heart. It breaks all our hearts. My dad's heart is, I think, lying shattered everywhere.

Last week we got to spend some time at their house. My sister brought her grandbaby who is now almost two. After dinner, my mom was talking with her. Or more like, she was talking to mom in her own pseudo-language of half English and half toddler.  I watched from across the table as my mom used an empty plastic glass as a make-shift hat. She would put it on her head and then when it would slide off, they would both laugh and laugh. Over and over she did this and never did the trick become old to either of them. Tears filled my eyes as I watched her play with the baby just like she would have with any of her grandchildren and for those moments, she was my mom. More tears came and come again now as I realized I would never be able to watch her play with my grandchildren like that. Such a cruel disease.

So, God answered my prayers! Yay, right? I think so, I guess. Maybe I'm wondering if I can get a 'take back'? Maybe I'm not ok with this? Maybe I'll never be okay with this? I don't honestly know today. Perhaps tomorrow will be better or it may come with more change, still. Daily, Jesus asks me to lay my requests at his feet and to trust him.  I'm great at talking about that and I can even lay my requests before him. But, can I leave them there? That's a little more complicated, requires a lot more faith and a strong dose of dying to my own wants and desires.  I guess I am still working on that one...or perhaps God is still working on me.

Yesterday, Tim Tebow, my daughter's #1 hero had this verse on his Facebook status.  Jeremiah 26:14: "As for me, behold, I am in your hands; do with me whatever you think is good and right." Mom is in His hands. I know He is way bigger than this disease. Prayers were answered. I don't think I would ask for a "do-over" or a "take-back", even if I could.

10 x 6 = 60

Yesterday, June 5, was my parent's 60th wedding anniversary.  As my son would say, "That's a long time!" And indeed it is.  In 21st century standards, it is almost unheard of. What does it take to make a marriage last 60 years? Better yet, what does it take to make a GOOD marriage for 60 years? Maybe the answer is in the word 'good', minus an 'o' and capitalize the 'g'.  GOD. I'm not sure how you make a marriage 'good' without God. I mean let's think about it; 60 years with the same person through all kinds of trials, struggles, disappointments with some really good times thrown in the mix.  It's hard work to be married, yet my parents have always made it look incredibly easy. They had a few things going for them to begin with; such as almost identical socio-economic and religious backgrounds. They each had parents who loved and cared for one another, and they had a strong community of support through friends and relatives.

But I think for them it's more than that.  Marriage is probably one of the most self-less things you will ever do; if you do it right. I believe my parents have always put the other's needs before their own.  This seems to work particularly well, when both parties are doing it. It's often disasterous when one spouse abides by this principle and the other is slightly narcissistic! My dad has always been more concerned about my mom's happiness than his own and my mom has always been more concerned about my dad's happiness than her own.  Therefore, their lives have blended together in this beautiful harmony that has filled countless other lives with beauty. Hmmmm...it gives me pause to just sit and contemplate the blessing that has been in my life and potentially for generations to come. So far out of their seven grand-children, four have already chosen their marriage partners and I don't believe they could have possibly chosen any better than they have.  I can only hope and pray that my children will chose as wisely. Of course, while there is never a guarantee of success, it always helps to start with a good recipe.

This last week one of my very best friends lost her mother at the young age of 66.  No time to say good-bye.  No "I love you's" could be spoken.  She just went to her job in the morning and within a couple of hours she was gone.  I wrestle with the long, painful good-bye that we are all saying with my mom, but I can't imagine NOT saying good-bye.  Maybe in the end, it's just hard either way.  We don't get to choose the way we exit this life and very few of us will get to exit the way we would want. (For me, that would be napping on the beach at about age 95, having walked to the beach.)  Bottom line?  We don't know when our last conversation will be with those we love so we need to continue to appreciate the moments, because in the end they are all we have. Perhaps not many of us will have 60 years with our spouse. Maybe we can learn a few things from dad and mom. Putting others before ourselves results in some very beautiful moments, indeed.

School's Out...Oh No!!!

Yesterday was the first official day of summer break for me, for my kids and most of the city in which we live. Yikes! Why does this time always scare me so much?  And then why am I always so sad to see it end? Chores have been assigned, schedules are set and vacation time is planned. Many fun times will be shared this summer, yet for those of us who either choose to or have to work, the next couple of months evoke enough fear and guilt to send many of us over the edge; or at least to the wine cellar. It's been almost five months since I've blogged.  Can't believe it.  For the last several months, the guilt of not having blogged, kept me away from blogging longer still. Crazy!

Winter has passed, (thankfully) and spring is almost to a close. I planted tulips last fall and they came up beautifully! I was forced to smile each time I gazed upon them. Such a promise of new life and for me the signaling of the end of cold weather. I love warmer weather.  Don't get me wrong; I can do without 95 degrees with 95 percent humidity.  But give me 75 during the day and cool, crisp nights and I think I could live in those conditions for the remainder of my days.  Alas, I live in Nebraska and if we get a half-dozen of those days all year (without a 40 mile an hour wind) we consider ourselves lucky. Thankfully, I have been able to exercise outside pretty consistently the last month or so. Man, how I love that! But I'm never too caught up in my exercise to stop and listen to a Cardinal.  Cardinals absolutely fascinate me. I remember my dad pointing them out to me when I was a child. I can remembering him standing at the window looking for the beautiful red-feathered creature, with it's most distinct call. Were they a rarity 35 years ago? Or was he just fascinated with them too? I also gawk at the yards and landscapings of the beautiful homes I pass by.  Sometimes to the point where I nearly trip over uneven sidewalks! Today I stopped by a pond and just watched the water for a bit. Drink in the moments...

I would like to think that summertime will allow for more peaceful times to drink in moments, but like always, I'm sure we'll be going crazy after this week when there seems to be a lull between school and summer schedules.  We've got two on basketball teams this summer and next week they will play 6 games in three nights. I will "go" to work most days, even though "going" consists of padding over to my home office; which I have found to be both a blessing and a curse. Perhaps the bottom line is that I'm afraid that my "moments" with my kids are slipping away too fast. So when summer comes I get scared that I will miss the moments because of obligations to my job, laundry, cooking and activity schedules. Maybe that is why I am always scared to see it come, but sorry to see it end. Here we go...

Holidays, Hope & Healing...

Well, it is official; the last celebration has occured, the decorations are packed and back in the attic, the Christmas cookies that were not eaten, have been tossed and I'm back to listening to smooth jazz.  The holidays are over. Good times, good friends, great food even in the midst of chaos.  This morning as I write I am sitting directly across from the couch where my daughter has spent most of the last nine weeks. Still no improvement.  The medication that we all thought would "cure" her has only resulted in side-effects that have made her weaker, feeling sicker and definately skinnier! Now even getting up the stairs to go to bed leaves her legs aching.  Nausea is her constant companion. Somehow she weathered the holidays with relatively good spirits, but now the tears come more frequently.  She is so frustrated, so depleted, so very much out of sync for what a girl her age should be experiencing. What comes next I do not know. Right now we are awaiting word from Mayo Clinic to find out if we will head up to the "great white north" or if they will simply make recommendations for the doctors here and/or in Omaha to carry out more locally.
My sweet mother is constantly worried about her (as are many others) and being the positive person that she is, will continually look for any positive sign that she can see; be that a smile, a twinkle in Bailey's eye or that she is eating something. The holidays with mom were bittersweet. I was often wondering what the next set of holidays would be like. Namenda, the medication that my mom is now on, seems to be helping some and without the ugly side-effects of the Aricept that we spent the first six months trying to make work.  Her ability to converse seems to come easier. Some of the things that she remembers just blow me away.  People and events from two weeks ago; a period in her memory that I think would not exist at all are often able to be recalled. I have learned that her quick wit is actually a hallmark sign of Alzheimer's.  I wish I could remember exactly what she said at our Christmas celebration last week, but I stood up, went over to her and told her that she was the cutest thing ever.  She seemed to like that; as it brought a huge smile to her face and even a little giggle.  We hugged, she gave me a kiss and told me she loved me. It was my favorite gift.
One gentle and beautiful reminder that this woman is still the one I have known for 41 years, was stationed just like they always have been above her kitchen sink.  Strangely absent for the past several months, her index cards with Bible verses once again occupied their familiar position.  The first at the front of the stack was from Ephesians 5; "Do not be anxious about anything, but in everything, by prayer and petition submit your requests to God. And the peace of God which transcends all understanding will guard your hearts and minds in Christ Jesus."  Little could anyone have known that Bailey and I had just had a discussion about that verse just a day or two prior. I love that verse because it contains a command, but it also contains a promise.  Notice that it says to not be anxious about ANYTHING.  It doesn't say some things or little things.  It says, DO NOT be anxious about ANYTHING.  Why?  Because with anything and everything, we can take it to God and lay it at His feet.  Then comes the promise...PEACE. And not just any peace, but the peace that transcends ALL understanding.  It's being calm in the midst of life's storms.  Notice that the verse does not promise that it will be easy or that it will be over.  It promises PEACE. Bailey and I decided that we knew we could rest in God's promises regarding her health.  We could claim and receive peace in the midst of the frustration, weakness, dizziness and chaos of her situation. Seeing that same verse above my mother's kitchen sink assured me that God's love for her and all of us is at work. I and my entire family can have peace about mom as well. The reading of the Christmas story, the singing of carols; all familiar to her seem to come so naturally and easily. The fact that mom did not participate in the preparation of the meal is just really a detail. She was there.  She was there laughing, smiling and no doubt thanking God for her family and for sending His Son, Jesus.  "Sleep, in heavenly peace."

Where has it gone?

Where has it gone?  Time, that is.  it's been almost two months since I've been able to take the time to write.  I would like to write a little, even a few sentences each and every day.  I've got books that I would like to start writing and of course there is this blog.  However, with both reading and writing I find myself easily caught up in it to the point where nothing else gets done, so unfortunately I put it off until I think everything else is "done", which of course it never is so ergo, the long pause between posts.  Another good resolution to add to the list!

The view from inside the sandwich has been an interesting one the past 8 or so weeks. I've enjoyed eight beautiful days in Hawaii with my husband celebrating our 20th anniversary, I've decorated, shopped, baked, wrapped and cooked for the holidays and I've spent way too many weeks with my beautiful 14 year old daughter on the couch with illness.  She first spent 2 1/2 weeks with a very odd virus and then since December 2 has been suffering from vertigo. It's been challenging for both of us and she has handled it much better than I would have. 

We finally ended up at Children's Hospital yesterday and today where they confirmed this mother's suspicion that there was an inflammatory process going on deep inside her ear and prescribed oral steroids to bring down the inflammation.  I would have traveled to the ends of the earth and would have even hung her upside down from atop the Empire State Building if I would have thought it would "fix" her.  Repeatedly I asked the physicians treating her here in Lincoln to prescribe steroids and each time they told me "no".  So we use how many healthcare resources to learn that a $4.13 prescription should take care of it??? My dear, precious (and very intelligent) friend and Nurse Practitioner, Amy, is the one who first asked me about steroids only days after she first became ill with vertigo- gosh what would I ever do without her! And researching it only confirmed what she thought.  After all, if it is protocol for Mayo Clinic to use with their patients suffering from Labrynthitis I thought it should be good enough for my daughter!

Yes I enjoy, no I LOVE, being right.  It's probably one of the more satisfying emotions for me. But that's not why I am upset, angry and just plain ticked off that no one listened to me. My daughter has lost 7 weeks of 2010; about 15% of her year!  She missed 1/2 a quarter of school!  She is weak and severely deconditioned.  She has missed making memories with her precious friends and basketball team. The risk/benefit ratio was certainly in our favor with this medication, but instead my mind was fed a steady diet of such dreaded diagnoses as MS, cancer, vascularitis and others. Ahhh...who am I kidding?  I certainly would not want the responsibility, risk or exposure that physicians have. I know they have to be so very careful in this litigious society in which we live...but that doesn't allow my daughter to go back and sing in the concert for my mom, or participate in the dynamic fellowship of a Christian basketball team, enjoy Christmas shopping or time with her friends.

Time can never be replaced and once its gone...well you know how that sentence ends. What if it had been cancer? What if tomorrow the phone rings and a life is suddenly over? What if tomorrow is the day you find out that your life will be changed and different forever? Will you, will I, regret how we have spent our time? With tomorrow bringing the close to 2010, what will I vow to do differently in 2011? Will I steward my time more effectively?  I sure hope so. Tonight I sat on the couch and held that 14 year old girl. With only 3 1/2 years until she goes away to college how many more times will I have the opportunity to just hold her? Treasure your times before they're gone...

View From the Fog

Today gives me pause to stop and wonder...What would it be like to literally crawl inside the mind of an Alzheimer's patient for even a hour?  What is it that goes on in there?  I think it would help me so much to understand the world from their viewpoint.  I might know better what to say, do, feel.  Mom is slipping from us so quickly.  She has frequent delusions which she can remember for weeks! What's with that anyways, but she cannot remember where she put her clothes?  The mind is a strange, wonderful, complex and poorly understood entity.  Yesterday, mom told my sister how she was so amazed that my sister was related to that man they had breakfast with.  My sister replied, "You mean Dad?" "Well, that's what you keep calling him.  He such a nice man and he has helped me so much through all of this."  Praise Jesus that she is not afraid of him.  I pray that would continue.

Last week I spent the day with Mom and Dad helping them do some fall baking.  It was a very nice day.  Mom enjoyed the activity, but I was amazing at the lack of initiation she showed to become involved.  She had to be cued to do something very basic, but in a minute had to be 're-cued'. So many typical "alzheimer" type of things were going on.  She put the produce from their shopping trip the day before into the freezer, she couldn't stop ruminating about the leftover apples in the bowl on the counter.  She just wanted to figure out what they would do with them.  Well, we had spent 10 minutes looking for the lid to that bowl, but to no avail.  Finally I put some plastic wrap on the bowl and stuck in the fridge.  She never brought it up again.  "Out of sight, out of mind." She pulled me into the bedroom to recount for me the little boys that had been there weeks before (Her delusion).  She said that they were handicapped and did not respond to her, but if she sang to the one little boy he would smile.  If she truly did that, I really wished I could have seen it.  I bet she sang "Jesus Loves Me".  But perhaps it was just in her mind.  But now, "They tell me they are gone."  she says.  The only thing I knew to say was, "Well, it's so nice you don't have to worry about that any more."

I used her beautiful old (and I mean OLD) Singer sewing machine while I was there to do some quick mending.  (Us 'sandwich' folks, don't often have sewing machines.)  I, of course, couldn't remember exactly how old it was and I asked her if she got it when they got married almost 60 years ago.  She said a few things that did not necessarily make sense to me, but then said that her mother-in-law had given it to her as a gift with some inheritance money she had received. Oh, the hours that she has spent at the beautiful old machine.  Each one of the famous "Nanny Blankets" were made while sitting at that machine.  Four daughters were taught to sew and I know my children were taught by her on that machine as well. They would make pillows and other beautiful creations to bring home after a day of "spoiling" at Nanny's house. It reminded me of the beautiful quilts that she has made.  Perhaps a few pieced quilts, but mostly either needle work or plain off-white with the most beautiful, intricate patterns that you could possibly imagine.  She could stitch 11 or more stitches to the inch; which in quilting terms is nothing short of amazing.  Each stitch was perfect and uniform.  Gorgeous.  I have an incredible quilt that I will try to post a picture of.  My children each have a quilt along with their Nanny blankets.  I remember telling my husband that someday I would take out those beautiful works of love and cry.  And I will...

This coming weekend Mom will meet her fourth great-grandchild for the first time. They are coming for a visit.  Four generations of girls....how cool is that? I hope many, many pictures are taken.  I hope that Jen gets a video of Mom singing "Jesus Loves Me" to baby Elena.  Jesus does love Mom, just as He does us.  He has not forgotten or forsaken her or any of us.  And none of us...I mean NOT ONE, could ever go through this if she herself had not equipped us so perfectly for  it.  She is the one who taught us compassion, humility, caring, sacrifice, remaining positive and always look for something that can be brought out of the situation to help someone or strengthen oneself. And perhaps most importantly that God can be trusted in ALL things.

Jesus love me....even through the fog.

It Was A Good Day

Each morning had a certain crispness in the air.  The sun shown bright while the gentle breeze blew each day, the same as the one before it.  Odd for Nebraska.  I often called this the "make-up fall".  The one preceeding it was trecherous; cold, nasty and unrelenting. (We won't even bring up Winter!) On this beautiful October day, I found myself driving to my hometown to spend time with my mom and then bring her back to Lincoln to watch my oldest daughter, Bailey, play volleyball. When I arrived, Mom was standing in the garage waiting for my impending arrival.  I called her when I was about 30 minutes away.  She had remembered I was coming, but was uncertain of the time. Since I am often running late, it is the perfect excuse to let her know that I will always call her when I am on the way. We headed over to a local fast food restaurant.  Knowing she likes soup, I told her what they were serving.  "Oh yes, I'll have that!" she said when I said they were serving chili.  Never one to ever appear to have a strong opinion about such things, I found it humorous that she would be so bold with her choice.  She loved it and devoured ever last bit. She is so thin.  Even thinner than she was in her prime.  She once said to me, "I weigh every once in awhile and if I weigh less that 113, I just have to eat like mad."  Wow, what a problem to have!  Often, now we fear that she forgets to eat, especially when dad has been gone in the field for harvest.


After lunch we set off for the pumpkin patch.  She had made it quite clear that she did not have any desire to have those things sitting around her house.  But I remember the days when she would buy dozens of them and paint them all sorts of colors and characters.  Clowns, sad faces, funny faces, scary faces....they were precious. Many people with Alzheimer's tend to hoard their possessions.  Not my mom!  The opposite would be quite true.  Most of the time we can't find many towels in the house and while she has never been one to have clutter standing around or anything on her kitchen counters, this now seems to be even more exaggerated.  I bought some pumpkins for our home and she really seemed to enjoy browsing through the Christmas shop.  We drank some apple cider while we looked at the various snowmen, angels and manger scenes.


We headed toward the game and it was wonderful to visit with her as we drove. She seemed to do so well; especially if I was directing the conversation and asking her questions.  She talked about her daughter Joyce and her growing up in the depression.  One thing that she said to me that I had never heard before was that shortly after they lost this daughter, someone had said to her, "Well, at least she wasn't a real person yet, she probably didn't look like much yet."  Mom said that this was the thing that probably hurt her the most "during that time".  However, anytime the conversation went idle, she would begin to talk about the "men" in the house.


She so enjoyed watching Bailey play.  She seems to do well in that environment and always knows to cheer at the right time and of course, thinks her granddaughter is so very special. It hurts me so much to think that she will most likely not see her get married.  She will not hold her children or sing "Jesus Loves Me" to them.


But you know what?  THAT was a good day.  I cherish the good days and will continue to do so for as long as the Lord would see fit.  I believe we will let Bailey provide the next blog entry.  She wrote a beautiful speech for a class about her "Nanny".  I hope she will share it along with her special thoughts. :)

So What's Between the Bread, Anyways?

I guess I am whatever is inside this sandwich.  An interesting thought to ponder, I guess.  Midlife crisis?  Maybe. I've been a nurse now for going on nearly two decades. What do I want to be doing for the next 20 or 30 years? My heart yearns toward writing and speaking, yet I very much enjoy my job which gives me extensive flexibility and a stable paycheck. Do you really ever know if you are at a crossroads until you have passed it? What I do know is that I was certainly called by God to be a mother.  That has to continue to remain the number one priority.  Secondly, I have been put in a position to minister to my parents.  What an honor and a privilege it is to help the very people who gave so much for me.  But what about that third piece of the pie? (Or in this case, sandwich!) What is that supposed to be right now? Continue as I have been?  Add the writing and speaking piece in addition? It would be so nice if God would use email to convey his will!  But I know that part of the maturing and growing is going through the process to discover what his will is in our lives.

I do think that there are a lot of opportunities that exist to help educate people about this disease and how to best help those suffering from its effects, but are still able to be out and in the community.  I do believe that since many people don't know what to do or how to do it, they just choose to do nothing at all.  Their fear of doing or saying the wrong thing causes them to not do anything at all.  Those closest to the Alzheimer's patient often confuse their ignorance (and I'm using that term as it is defined; please do not confuse it with stupidity) with insensitivity. 

Yesterday I received a wonderful book in the mail.  It is titled, Creating Moments of Joy by Jolene Brackey. I was unable to locate it at my local bookstore, but was able to order it through Amazon.com. I was completely hooked after just a few pages.  I wish that today I had the time to just sit down and devour the book in its entireity.  It is nothing short of amazing.  It is humorous, light-hearted and REAL.  It gives practical insite into how to best bring joy to the Alzheimer's patient and subsequently those closest to them. If you know ANYONE who has suffered from this disease, it is a must read.  I am so thankful to the family who recommended it to me.  Up until this point, I became nauseated everytime I even picked up a book on the subject of Alzheimers.  This book is different and leaves you yearning for more. 

Last night my nine-year-old daughter asked me if Nanny would be able to come to her wedding.  I had to answer her that I did not think Nanny would be able to do that, but that perhaps when we are in Heaven, God allows us to have glimpses of those we love when they are so happy.  She burst into tears and exclaimed that she wanted Nanny to see her in her wedding dress!  I just held her tight and she cried while I prayed; for her, for my mom, for wisdom in how to guide my children through this.  I absolutely hate it when kids bring up things for which you have NO ANSWER and can't even give them anything that makes any logical sense to you, let alone their little minds. Finally, I settled on sharing with her that my sister Joyce, who was premature and passed away the same day she was born, needed a turn with Nanny. I shared with her how we have had Nanny all these years and Joyce would get to have her for a few years before we all got there and had an eternity to spend together. This brought a huge smile to her face.  "I never thought about it like that", she said.

This brings me back to the half of the sandwich that remains my number one responsibility; my children. The part of the sandwich that remains in between the slices of bread is still evolving, changing and growing.  Stay tuned...

Why is Parenting Scary?

Many of you would reply to the title of this post with something about parenting being scary because kids are scary!  Well, I would probably give you that one.  Sometimes my children scare me to death! I remember like it was yesterday and they were five, three and an infant.  It was so much work; diapers, potty training, teaching them to control their bodies AND their mouths made it exhausting.  Specifically, I remember wanting that stage to be over and for all of them to be able to tie their own shoes and go to school ALL DAY! Fast forward almost a decade and I'm suddenly wishing it to slow down! I realize that I have but a short three and one-half years with my oldest and she will be off to college. My days of significant influence in her life is probably over for awhile, at least.  Yes, my influence is still there, but she more likely now looks to her peers, mentors and teachers whom she admires. (Thankfully she has very Godly role models or this would be even scarier!)

However, something my pastor pointed out on Sunday was that the scariest moments in his "pastoring career" came with the realization that someone was actually LISTENING!  The responsibility that brings is tremendous and scary!  Someday, as Pastor Clark said, I will have to stand before God and give an account for anything I said in representation of Him! Yikes! Could it be that is what scares me the most about parenting?  That they actually ARE listening? And are they only listening when I don't really want them to be listening? When I am handling disappointment or frustration what are they hearing? Are they hearing that I trust God to take care of me or are they hearing that I think my problem is too big for God to handle?

What if they are really listening? Perhaps that is also where some of my frustration lies?  They are listening and therefore when they do not handle situations as I would like it may be only because they are doing exactly what I do? Scary, indeed. 


What if much of my fear lies in the brevity of it all?  Will she be ready to be out on her own? Let me tell you, my kids think I am a "mean" mom.  I believe that it is my job to allow them to do as much for themselves as possible.  By the time they are somewhere into their senior year of high school, my goal is that they are governing themselves, doing their own laundry, able to prepare a meal, balance their checking account and set their own curfew.  I don't know if I will succeed in all that and I am certain that even if I do I will fail in other areas.  But it remains a goal I have for my kids.  I don't want to send them out with no ability to handle themselves.


Parenting is without a doubt the scariest, most wonderful, most frustrating, most incredible thing I have ever participated in.  One of my favorite sayings is: (And I have absolutely no idea where it came from) "Kids turn out despite us, not because of us."

Times Are Changing Fast

It is interesting that once I started writing about my mother and this disease, I suddenly began to think more critically of what was happening around me; in the present and in the past. I've come to realize that my mother has actually been suffering from Alzheimers for probably four years or possibly more.  I remember the time several years ago when she was unable to orient herself enough in a department store to find the exit.  I remember the time when she suddenly did not remember how to sew together a baby blanket and my sister had to show her.  These moments were transient, however, and the rest of the time she seemed like "mom". Even as a nurse myself I was under the false assumption that without a change in personality, it couldn't possibly be Alzheimer's.  It was so easy to explain away these momentary lapses in memory or as we call it in the medical field, "executive functioning". Then there was the day in May of 2009 when she had an accident just outside of the town where they live.  She was inches from disaster.  Fortunately the only injury was to the car itself.  Was that the disease?  Or was it just a normal lapse in judgement or eyesight that so many of us have ourselves experienced?

Now, it seems that with every passing month there is a new symptom; something else that mom can no longer do like she used to. However, her personality still continues to remain largely intact. I have decided that I am glad that we did not know it was Alzheimer's before we did.  We went about life very normally with her.  We didn't spend the last three or so years with an "elephant" in the room.  We just enjoyed our times together. But it would also explain why now the disease seems to move rather quickly through the various stages. It does worry me that my father and my children have not had enough time to prepare.

She often resorts back to what she has always done best, which is take care of others.  Two recurrent themes seem to come up time after time as of late; taking care of the "men" and having children in her home. Interestingly enough the men are all of differing ages and stages of life and seem to go and do whatever my dad is doing.  The man who made the coffee one morning last week she described as "quite a talker" and "almost like a grandfather figure to me".  Undoubtably it must be my dad as he is now.  This lead me to ponder the idea further and I honestly believe in my heart that all the "men" are my dad in the various stages of life as she remembers him.  It is beautiful and heart breaking all at the same time. We have definately come to realize that for her own safety, mom can no longer be left alone.  This is going to be a tough transition for everyone, but with community resources that are available along with numerous friends and family I know that she will be well cared for.  But of course this leads to me feeling guilty that I cannot do more for her.  But I also know that she would just "crown me" (Those are the words she would use.) if I would come and care for her when I should be doing things for my own kids.  Ah yes, back to that whole sandwhich thing. How do I organize my life efficiently enough to allow the maximum time possible with her?  Especially when there are times that I really just want to run away from all of it? I don't pretend to have all the answers.  I'm searching, like so many of us are searching; for balance, for sanity, for the peace that comes with having no regrets.

I believe the most beautiful moment of my entire relationship with my mother came the day after her "diagnosis" in March 2010. We had just spent a wonderful day together as daughters and parents.  There were no husbands or children that day.  The six of us were simply gathered at my parents home where we visited and just enjoyed being with each other. We did not even talk that much about the "diagnosis". That evening when I left, my mom was standing at the kitchen sink doing some dishes.  She stopped, dried her hands and suddenly I found myself in the most meaningful and memorable embrace of my lifetime. We stood holding each other, and she just kept repeating to me that she loved me, loved my family and that I was so special to her.  "I love you so much, oh so much", she said to me. "I love you so much, mom", I said several times.  I don't know how long the embrace lasted for sure, but it just does not really matter.  I drove to my home with tears streaming down my cheeks knowing that I had just experienced one of the most important moments in my life and that I had been given a gift like no other. So many people are hurting, alone, without ever knowing that kind of love.  If my mom had gone home to be with the Lord that night I would have been at peace knowing that she knew how much I loved her and I most certainly knew how much she loved me. No regrets...

Why do we wait? Why do we wait for a diagnosis or tragedy to tell those most important to us how much we care?  How much we love them? I am most certainly guilty of this as well.  We so often get so caught up in the business of life that we forget what life is really supposed to be about. Will that "to-do" list matter if tomorrow you are diagnosed with a terminal disease or are in a car accident? The type of gift I was given by my mother that evening cannot possibly have a price tag associated with it - it was too precious to even begin to assign it a monetary value. Yet it was free. We all possess within us those same valuable gifts that we can give to others. It will cost us nothing, but a moment of our time, but it can remain with them for a lifetime.

Leaves...

Today while out for my run/walk I just could not help but notice the intense beauty of the leaves this fall.  I honestly cannot remember a fall more beautiful.  Day after day the weather is the same.  Cool in the evening and morning with bright, sunny, warm afternoons.  It's becoming so routine that I barely have to watch the weather anymore, and that is rare indeed for this part of the country where if you don't like the weather just stick around for a day and it will surely change.

Today I stopped and stood underneath one of the most beautiful Oak trees I have ever seen.  Within the tree was various shades of green, gold, red and orange.  In fact, upon further inspection some of the leaves themselves held all four of those colors within them.  The tree across the street had already lost all of it's leaves, others were almost "raining" leaves on me as I passed underneath and still other held all their leaves still green and gently swaying in the wind.  As I pondered this, I wondered why is it that given the same weather and location why would some trees be completely bare while others had not even began to change color? Then I further wondered why some 81 year-old people are still active and engaged in their lives and the lives of others, while others have already passed away and still others, like my mom, remain with us but yet not as she once was.

It would seem that it is God's order of things. Some things within his creation last but for a day.  Some for months or years and others for a decades or more than a century.  And perhaps it is the combination of all those things that add such beauty. What a wonder to gaze upon a hill full of trees at this time of year (Ohio comes to mind) with the beautiful display of color; green, red, orange, yellow...all mixed together. What a beautiful representation of a family where within the generations are green, red, orange, all together composing God's masterpiece and each completing their mission of time of earth.  Ecclesiastes 3:1 "There is a time for everything, and a season for every activity under heaven."

Knowing Mom...

The following post was acutally written in June of 2010, but I thought it would be extremely effective to help you get to know my mom if you didn't already.

Today’s date: June 4, 2010. One day before my parents will celebrate their 59^th wedding anniversary. Such a rarity these days to see two people as much in love now as they were then. I say as much in love, but yet it is a different type of love. Their love is so real; the way they care for each other, the way my mom looks to my dad for reassurance, for him to fill in the blanks when her memory fails her for a name, a date or a place. The way he helps her in the kitchen, buys groceries and has even learned to make a cake or yeast bread from scratch. Together they work through the daily tasks of life at 80 young years-of-age. One’s memory is failing and the other’s heart is breaking as he watches the love of his life slowly start to slip away. My mother has Alzheimers.

  

When my Dad and Mom were 38 and 39 respectively, and in early 1969, they learned that they would be expecting their fifth child. At the time they had 3 living daughters; Sue 15, Deb 13, and Jean 9. There had been one other daughter born between Deb and Jean. She had been quite premature and died shortly after birth. Her name was Joyce. You can imagine the shock when they learned that one more was on the way and on September 8, 1969, Elizabeth (Beth) Ann was born. Elizabeth for my grandmother who had passed away just 10 days prior and Ann for my other grandmother who had passed when my mother was 11. My dad always said that they could have had 10 kids and they would all have been girls. Some would have considered him cursed to be a farmer with all daughters, but he never considered it to be. Many people thought they would be upset about my impending arrival, but he always said, "We didn’t plan her, but we plan to love her."

My dad had a moderate sized farm and my mother was a homemaker and volunteer extrordinaire. She had a fruit and vegetable garden that was at least two acres in size. There was a strawberry patch that yielded at least 150 quarts of berries every year. There were potatoes which were always planted on Good Friday, peas, beans, sweet corn, pumpkins, cucumbers for eating and pickling, radishes, onions, lettuce, tomatoes and an entire row of fruit trees; cherries, apples, peaches, apricots and all of these delectable morsels were canned, frozen or otherwise eaten. Oh, and one cannot forget the beautiful roses that my mother grew. The entire house would be filled with one bud vase after the other with the beautiful, fragrant flowers.

If all that wasn’t enough there were acres of grass to be mowed, house to clean, fence to paint, and meals to cook; three squares a day plus morning and afternoon "lunch", as it was called. Cakes, cookies, bread, melt-in-your mouth pastries, and everything baked from scratch and with butter. Of course, laundry, ironing, visiting the sick or elderly relatives, family gatherings, spear-heading our 4-H club for as many years as I can remember, sewing, quilting…well, I think you get the picture. This lady could, without a doubt get more done by 9 o’clock in the morning than most people could accomplish all day; perhaps even in a week. She ran on coffee, leftovers, a good attitude, and a very long "to-do" list.  She was Superwoman to me!

The Beginning...

My beautiful mother, Ellen, was born on September 15, 1929 on the eve of the Great Depression. She grew up near Beatrice, Nebraska during a time when nothing was wasted. It was hot, dusty and money was scarce. She walked a quarter of a mile to the one-room school house where she first learned to speak English.  On a good day, she got beans inside her sandwich instead of lard.  She was the third of four daughers and when she was just 11, her mother succumbed to an infection and died. Raised largely by her older sister Martha, this event marked her life and made her who she is; a deeply caring, compassionate woman who always puts others before herself.  On June 5, 1951 she married her childhood sweetheart.  My name is Elizabeth (Beth) and I am the youngest of five daughters.  I have three living sisters and three beautiful children of my own who at this writing are 14, 12 and 9.  I proudly wear the label "Sandwich Generation".  I am raising and caring for my own children while simultaneously watching and sometimes caring for my 81 year-old mother who suffers from Alzheimer's Disease.  For several years, we were able to successfully dismiss her "forgetfulness" as normal aging. However soon we realized that this was more than just normal aging.  However, convincing my parents of that was a different story. Finally in March 2010 we received the diagnosis of Alzheimer's Disease. Her tolerance of the medications tried so far has been dismal and her descent into the "chrysalis" or cocoon of Alzheimer's Disease is occurring faster than we ever anticipated. Meanwhile, my oldest child's launch into High School has occurred simultaneously and I find myself in the busiest decade of my life.  Being born when my parents were 40, I would often joke that they would have to come to my high school graduation in wheelchairs.  Fast forward more than 20 years post-graduation and I have all my children all still at home.  My older sisters (15, 13 and 10 years older) are all grandmothers and all empty-nesters.  Their reflections of this journey will undoubtably be different from my own.  I hope to have them "guest blog" often to lend a different perspective.

Coming blogs will feature her story; the story of the woman she was and still is beneath the disease that now ravages her mind and robs us of this amazing woman. They will also chronicle our journey thus far and take a glimpse into this journey from my children's perspective.