Memories

Wednesday we had the Memorial Mass and Graveside Service for Mom and it was nice. At the cemetery I had a pretty substantial feeling of heaviness in my chest because standing there so close to the house she loved so much I could not believe she was under all of that dirt. As an adult I know that all that is really there is a shell and the person that she was, her spirit and her soul had moved on, but for some reason the child in me could not grab on to that spirit.

Instead I wanted to be next to my Mom in her sundress working with her roses, watching TV while she works on her needlework, sitting at the dining room table having sugar cookies and hot tea while solving the worlds problems, watching her eat and sincerely enjoy that un-toasted white bread with only cinnamon on it that a 5 yr old Jennifer made and called cinnamon toast. I never remember my Mom really being mad at me but she had this magical, subliminal way of letting me know she was disappointed in me. I remember Bunni and I came home from Bunni's Senior party very drunk. She did not say anything but the next morning she made us do some serious housework knowing that we did not feel very good at all. Of course we could not say we felt bad or she might know ... in hindsight though she knew and we got the message she was not happy with us!!

I miss calling my Mom for advice ... it was ALWAYS good and it ALWAYS worked. Back then it never occurred to me that I would not be able to call her right up until the end and get that same advice. In the last months I did talk to her about stuff because I started to believe she understood more than we had believed. And then I searched her expression and my memories for the answers.

And then there are the letters from the places she got retirement from. They go something like this ...

"Dear Ms. Shorter,

We are very sorry for your loss. We send our sincere condolences.

But she does not get any more money so if some shows up in the bank have them send it back."

Oh I get it but I kind of wish they would have left off the niceties. The bluntness kind of discounted the niceness. ;)

Overall I am doing pretty good ... my slumps do not last as long but the bedroom is still a work in progress. I often wear one of her shirts or headbands or robes ... it makes me feel close to her. Love you Mom!

Sense of Purpose

I miss my Mom ... alot!

I think it might be compared to the phantom limb people experience when they lose a limb. I keep having this feeling I need to go in to check on her, or I need to turn the TV down as she is napping, or I need to keep my voice down as I walk by her room.

This is the first time I have ever wished her room had not been the master bedroom because had it been just another room I could shut the door and sort through her stuff later ... much later! When I go into her room now I am weighted down in the shoulders, I cannot bring myself to make any changes because I feel like she might think I am discarding her and her memory. But I also believe that when people go to Heaven they do not think about us like that. They are in a joyous place and I believe that all of the pain and strife going on in this world is not conducive to a Heavenly experience and so God does not allow them to have an awareness of those things. So I guess it is the her I carry in my heart that I worry about offending.

And why do I miss her, honestly I really believed I was going to be stoic, rejoicing in her being able to start a new journey, so happy, so at peace. I was not going to be a whiney butt, going around feeling like woe is me. But I miss her eyes, the way she would stare at me so intently, trying so hard to get her message across. Sometimes I got it ... sometimes she was using expression to show annoyance, but that was rare, usually it looked like sincere gratitude, or sometimes love, or sometimes I think she was saying she was very proud of me, or sometimes it was a very apologetic look if she felt like she had hurt my feelings, or sometimes it was that look that said she was on my side no matter what when I cried because I felt like I was failing her in my efforts to learn.

I think my Mom and I "talked" more in the last 2 yrs than we talked in my whole life. I am so thankful for the gift of taking care of her!

I miss her soft hands, her periodic moments of sarcastic wit, her smile, her way of letting it be known what she liked or did not like without apology.

And maybe I also miss her because she was my sense of purpose, the reason I woke up, I am in a funk. I am more bothered by this "empty nestiness" than I was when the kids left. I am sure it will be better every day ... the bedroom door is closed and eventually I will get to it!

Celebrating Mom- December 2011

Mom's Eulogy

Mom's Eulogy written by her Granddaughter (my niece) Dana and read by her daughter (my sister) Laverne.

sugar

veg oil

vanilla

lemon extract

eggs

flour

Mix wet ingredients. Add dry. Drop heaping tsp of batter on ungreased cooking sheet. Flatten with buttered bottom of small glass dipped in sugar. Bake 400 degress 8-10 min “Watch ‘em so they don’t burn”

Who didn’t love Grandmother’s cooking? Her sugar cookies are a legacy themselves. It’s amazing when looking through all the memories sent in by Grandmother’s children, grandchildren, cousin’s and friends, how many of us talked about her special cooking. In my house when I cook something that tastes really good, I say, “You know why it’s so good? Because I put LOVE in it.”

Grandmother was not the touchy feeling kind of grandmother, she didn’t give big hugs or constantly tell you how much she loved you, but she LOVED you and we felt it in many ways. Her cooking, her sewing, her story telling, her community involvement, and her presence all evoked the essence of her love and the importance of family and heritage. I remember her tours of Matador and Whiteflat, making sure we knew our Texas roots.

I loved her cheesecake so much she made me one for my 10th birthday. And I loved that she always loved and welcomed my Dad, Don Wittler, even though he and Mom were divorced.

Her love for her oldest son, Ray, is elicited in his memories of their weekly phone calls after the family moved back to the Texas where Grandmother grew up. They would discuss hopes and dreams, problems and solutions.

Steve values how supportive Grandmother was regardless of what latest idea he was sharing, whatever adventure he was planning to embark upon. He never felt that she ever had anything less than total belief in him. He appreciated that she never smothered him with over protectiveness, giving him great freedom to explore his the neighborhood at a young age, even if it meant letting him wander for hours, through woods, across creeks, the shores of ponds and lakes, stores and shopping centers.

Lamar knew Grandmother loved him when she forgot his birthday and then apologized profusely the next day. And as a school bus driver he is reminded of her tone of voice that commanded respect when he finds himself speaking in that same tone on the school bus.

Over the years Beverly has collected particular philosophies of Grandmother.

On kids: “Never say no unless it is morally wrong or will do physical harm.”

On serenity: “They cannot get your goat if you do not tell them where it is tied.”

On integrity: “If you cannot say anything nice do not say anything at all.”

On life: “Live and let live.”

Grandmother showed her love for Julian by letting him rock out in the basement during his high school years! When Julian wanted to play in the Foose Ball Tournament in Lubbock, Dad said no. Julian pleaded his case; always coming home on time, doing chores. Dad said no. Julian retaliated. If I can’t play in the tournament, I’m not playing football and went to his room. Moments later Mom tells him Dad had decided he could play in the tournament. In first grade she walked him to the corner, then waited till he crossed the street and walked inside the building. On one such day after Christmas and Julian lost his brand new scarf, they walked up and down the street looking for it.

As a child, in awe of my teenage Aunt Bunni, I was able to witness Grandmother’s love graced upon her in many ways. The one that stands out the most is the puffy quilt she made for her college dorm. The fabric selected for the quilt represented many of the outfits she had made for Bunni during her grade school and high school years. Bunni and her children also loved Grandmother’s cookies, macaroni and cheese and her Galumpki.

How awesome is it that our Grandmother made Galumpki one of her signature meals. Our family ancestry was so important for her that she made sure we knew our heritage on both the Texas side and the Polish side.

Grandmother loved all of her grandchildren and great grandchildren. Some of us were fortunate enough to know her more because we lived in Texas. Others received her love through baby quilts, special embroidered napkins, pillowcases or table cloths; through family recipes and stories passed down by our parents; or through the philosophies instilled in her own children and passed down to us.

The following memories of Grandmother from her grandchildren reflect this love.

Danielle said “Every time I make grilled cheese I think of her making it extra good by putting a tin can on to melt the cheese and give it a nice crispy ring on the white bread. I also learned my sweeping the floor techniques from her. And , I remember the pageant dress she made for me which had a cowgirl look to it.”

Donnie recalled, “I remember her always cooking, sewing or baking those famous sugar cookies. I’ve never had any others that can compete with hers.”

DJ remembers most her home. “Year end and year out it was always the center of the universe in Roaring Springs. Everything revolved around that house in where she kept her family tight, close knit and in communication. It was tidy and warm and never changed. It was home base for the Zabielski’s.”

Jennifer also remembers Grandmother’s house, so homey. “I felt like nothing in the world could be wrong. I felt safe. I remember her having toast with butter waiting on me when I woke up. I remember in her eyes that I could do no wrong.”

Stevie Lynn said, “Grandma Grace was a strong and beautiful woman who truly had a graceful presence. She had a lovely smile that would light up the room.

Megan remembers that Grandmother was the epitome of class and style. “She dressed well, carried herself well, and you listened when she spoke.”

Our cousin, Lamar Tilson writes that she was his favorite aunt, a gentle soul. He loved visiting her home. It was so peaceful.”

And finally, my brother Johnny shares from Ecclesiastes 3. For everything there is an appointed time, even a time for every affair under the heavens: a time for birth and a time to die; a time to plant and a time to uproot what is planted; a time to weep and a time to laugh; . . . what advantage is there for the doer in what he/she is working at? . . . I have come to know that there is nothing better for them then to rejoice and to do good during one’s life; and also that every man/woman should eat and indeed drink and see good for all his/her hard work. It is the gift of God. Johnny adds, “My point in quoting these verses is what is mentioned in the last sentence. It is the gift of God. I did not know Grandmother that well but I do know all of the amazing people that she raised on this earth and I see all the good for her hard work. She has raised an amazing family and I am sure it was not easy, but worth every bit of work, and this is the gift of God that was given to all of us through Grandmother. You are all beautiful people and reflect the amazing qualities of Grace Laverne Tilson Zabielski.

The Funeral

Mom passed away on December 14, 2011 and we had her funeral yesterday December 17th in Matador, TX which is in the county where she was born and raised as Grace Laverne Tilson. She was born on January 13, 1927 and raised in Whiteflat, TX which is down the highway about 10 miles. It is what you would call a ghost town now, not really anything left there but dilapidated buildings. It was quite the little town in its hey day though based on the historical marker on the highway! Here is the text of that marker. My Mom's Granddad, my great Granddad, is the W.R. Tilson mentioned. The buildings in the picture are the old Whiteflat school and the early day Methodist parsonage.

Whiteflat
This area of Motley County was first called "White Flat" due to the tall white needlegrass which covered the flat prairie land. A post office, named Whiteflat, was established for the rural settlement in 1890 at the request of W.R. Tilson.
At its height, the community boasted four grocery stores, three service stations, three garages, two cafes, a hardware store, two gins, and three churches. A school, first housed in a one-room schoolhouse built by volunteers, opened in 1890. It was replaced by a four-room school in 1908, and in 1922 a new two-story brick structure was erected. It also served as a community gathering place.

Dependent on an economy based on agriculture and small family farms, the community began to decline as a result of the depression and dust bowl years of the 1930s. The Whiteflat school closed in 1946, when it was consolidated with Matador schools. The local churches disbanded in the 1960s; the post office closed in 1966 following the death of the last postmaster, Ida Morris; and the last remaining retail business, a grocery store and service station closed in 1968.

Mom was so happy to move back to Motley County, she felt like it had such good Christian and small town values. In a small town you are never alone. So I was sad and disappointed that not many showed up for her, but I was very thankful for those that did. Over the years I have noticed that those people have always epitomized the Christian and small town values Mom loved so much. You know who you are and I love you!

All seven of her kids traveled many, many miles combined to be here and that I am sure made her so happy. We had a wonderful time catching up and sharing stories about Mom.

We had the funeral at the Methodist Church in Matador and Pastor Bill did an excellent job on her service even though he did not know Mom. She had been sick and out of circulation too long for him to have had a chance to meet her. I was so happy that he was the one God put in our path when we were unable to get the Catholic Diocese to find us a Priest. Mom was raised Methodist anyway plus having the service there we were able to make it more personal, something we cannot really do in the Catholic Church so I was happy.

Annette Hollingsworth read the poem in my previous post and my sister Laverne read the Eulogy that her daughter Dana wrote. I will post it in the next post as a separate entry.

I've lived a life that's full. I've traveled each and every highway;But more, much more than this, I did it my way. - Elvis

Today I did not leave Mom’s side, I both sat with her and held her hand or I lay in bed with her. I watched her breathing patterns change exactly the way the nurse told me they would, the final one being what they call “fish out of water”. I prayed with her, I sang some, talked about what it was going to be like when she got to Heaven, and then I leaned over and whispered, “Tell Dad I love him and miss him and I love you.” She took a couple of more breaths and she peacefully slipped away. It was 1:15pm but the “legal” time is 2:22pm because we had to wait until the nurse got here to pronounce her.

From Mom to her Kids - Epilogue to My Life

Don’t waste your time in sorrow,
for you’re not meant to stay.
And linger in emotion that breaks
your heart this way.

Rejoice and celebrate,
the life that once was mine.
The moments that were shared
and what I’ve left behind.

Remember times of laughter –
of joyful moments shared.
Of casual conversation,
and meals we prepared.

Remember all the times together,
the laughter and the tears.
The times we spent together
over all these years.

A blessing God had given me,
to raise you as my own.
But the gift that God did give to me,
was never mine alone.

Strong men and strong women,
you grew up to be.
To touch the lives of others,
and grow our family tree.

I am so very thankful,
in all that you’ve become.
No one could feel prouder
of each daughter, of each son.

Mistakes, yes we all will make them
But that’s just how we learn.
Don’t look back upon them
with any measure of concern.

I did what I knew best,
though mistakes, I made them too.
It was all part of this journey,
you learned from me, I learned from you.

Don’t think of any memory now
Of one that you regret.
Instead be glad, as I am,
that it was time well spent.

With each moment we’ve come to know,
a different part of who we are.
And ever you were dear to me,
whether near or far.

You may not ever know,
how your impact was so great.
Of what your lives did mean to me,
as I sit now, at heaven’s gate.

Because of each of you,
I spread my wings to fly.
And when my wings were broken,
you wiped away the tears I cried.

Who you remember me to be,
comes from all that I have known.
The good times and the bad times,
led me to the place, I now call Home.

I sing with angels, dance in heaven,
I sit at Jesus’ feet.
I’m at peace, no pain, I’m restful,
I am a masterpiece complete.


Written by my brother Ray's friend, Tracy Lynn Schiro Vokac, for Mom to her kids. Thank you Tracy ... you nailed it!

The Chair

I had company today and I talked about one of the things I miss the most was Mom not being able to sit in her chair in the living room. It always took me back to Roaring Springs and her in her chair. It created the same feelings of "going home" to see Mom and Dad and the way they made me feel so "taken care of". When I was in Mom's house in Roaring Springs it did not matter what was going on in my life, for that few days I did not have a care in the world! So when Mom was in her recliner in my living room all was right in my world, I so looked forward to the evenings. Now I feel out of sorts. I told Leann that while my Mom was never super affectionate there was never a time I did not feel very loved by her!

One of my friends posted this on Facebook today and I thought it was perfect!

Snoring? Yea, that works!

Mom had a big decline this weekend. Things just did not seem right on Friday, so much so that I cancelled her shower because I was afraid of trying to get her very "out of it" self into the shower chair. Then Saturday morning she was very congested ... it seemed like it must be very hard to breathe but really she did not seem to be too bothered by it. The hospice nurse was concerned but also said it was an expected part of the process. She had a name for it but just saying it makes tears well up in my eyes so I will call it snoring. Actually there is a story behind that ... calling it snoring.

I gave the family an update as to her status which included calling Jennifer and of course, even though I told her she did not have to, she wanted to come see Grandma. And of course that meant explaining to the kids why they were going back to Ft. Worth again, not that they were complaining but they had just been. Well Matthew is the one that HAS to fully understand everything ... there is no glazing over things with him. So when Jennifer talks about Grandma Grace not doing well he starts to quiz her about what happens when Grandma Grace dies. Jennifer says "Matthew, don't say dies, say passes away". He says, "Okay". There is a period of silence and Jennifer says she can tell Matthew is really pondering the whole concept. Finally he says, "So when Grandma Grace passes out then what happens?" Passes out ... out of the mouths of babes, right?

When they get to our house Matthew comes to Grandma Grace's door with such trepidation. I look up at him from her bed and feel immediate panic. How do you handle this situation? I know with kids this is such a scary thing. Have you ever noticed how kids are often a little afraid of the elderly. Is it that they look different or is it that the elderly represent end of life and dying? They seem to be a little afraid of getting too close, as if they are afraid they might end up on the slippery slope with the elderly person and "die" too. How do I make this process more palatable to a 9 yr old?

Matthew is not sure what to do, do I walk over there? Do I turn around and leave? I say, "Come on over here, Grandma Grace and I were just talking about all of the people she is going to see in Heaven ... Grandpa Ray, her Mom and Dad, her brothers and sisters" ... He off handedly acknowledges what I am saying but I can tell he seems most concerned about her breathing. I say, "I know, she snores very loud huh? It is hard for me to take a nap with her because she snores so loud." He smiles and says, "Yea!" and leaves. Most importantly I think he is okay with the process for now.

Saturday we ended up with Julian and Shari, Bunni and Jamie, Megan, Jennifer and the kids, all here to see Mom. It was a great day ... Mom is still bringing the family together whether she realizes it or not! ; )

FYI, Mom is on oxygen now so her room has the steady hum of the oxygen machine ... feels so "hospital-ly". I thought about saying no because it seemed unnatural but it does make Mom more comfortable ... and that is my goal, to make her comfortable.

Faith

Faith is a belief in things unseen. I believe in God, Jesus and the Holy Spirit not because I have had them over for dinner, or because the Bible tells me I should, or because I have seen the sick healed or the dead come back to life. I believe because of all of the intangible miracles there have been in my life. The answers to prayers that some will claim are coincidence or luck but I believe are just one of my life's many little miracles because I prayed, put one foot in front of the other, did my best, and then turned it over and let Jesus take the wheel.

Well I heard a song by the Booth Brothers, "She Still Remembers Jesus' Name", and it has made me realize that maybe I am living in the midst of a miracle right now. I had never thought about it but Mom cannot place me as her daughter, and she does not appear to have any clue who Dad is or her kids are in pictures because there is no change in her face whatsoever when I show her. But when I have showed her a picture of Jesus, or talked about her teddy bear that says "Jesus Loves Me" her face softens and her eyes brighten. To me that just seems miraculous because based on what Alzheimer's does to a persons brain and memory, except for God's intervention and a miracle, I do not see how she does not seem to remember the faces of those she lived for since she was 19 yrs old but she so clearly seems to know Jesus.

Mom does seem to have recognized the voices of her kids as familiar and they seemed soothing to her but I do not know that she put it together that it is one of her kids and with her aphasia it is not really possible to ask her.

On another note Mom is really out of it the last several days. Sleeps almost constantly and her gagging is getting worse when I feed her. I am constantly vacillating between feeling like I need to lay down with her so she is not lonely to feeling like she has absolutely no use for or interest in me and I am bugging her. I have to work hard not to feel sad about that by reminding myself it is part of the process.

Between Heaven and Earth?

Sometimes I wonder what Mom dreams about. More and more often when she is asleep and I wake her up the look on her face reflects such peace. She looks at me as if I am someone that has gone on to heaven that she has not seen in a very long time and she is so relieved that they have finally showed up to get her. But then in a little bit she seems to realize it is just me, the peace drains from her face, and life goes on. In the info I have read it says that it is common for people in transition to see people that have gone before them so maybe that is what she is doing.

At least I like to think it is that because that is easier to swallow for me than to think she is laying there thinking, "Oh man, I hope I get a different person coming to work today to take care of me, I am so tired of looking at that same woman all the time." Then when I come around the side of the bed, she looks with such anticipation, squeezes her eyes shut really hard a few times to focus, sees it is STILL me and thinks, "Oh my goodness it is STILL her!" ; )

Really though it was a pretty surreal moment this evening when I went to wake her up. For a few seconds it felt like that in that space I was sharing a moment in a place between Heaven and Earth. The lights in her room were low, her Christmas lights were on which make the star over her nativity scene really sparkle, and when I come to that side of the bed to wake her that is all behind me so maybe I might have had more of a glow. As I bent down over her bed to wake her, she opened her eyes and the look on her face was so amazing, she was so happy and so at peace, she reached up to touch my face (remember, normally she has very little use of or control of her arms), I took her hand and started to talk to her, after about 30 seconds she seemed to realize it was just me and she had not yet "slipped the surly bonds of Earth" -John Magee, and her face lost the glow it had. I kind of feel bad for her when I see that disappointment to the point that I do not want to ever wake her up but then if I don't she might not ever really wake up but rather just sleep. I think now I am going to be more consistent in turning on the light and puttering around her room to see if she will wake on her own so I do not have to wake her and create that kind of disappointment again.

Just random stuff ...

It has been nice having Mom here during the holidays. She was pretty alert on Thanksgiving day, seemed to enjoy the hustle and bustle of all the kids and grandkids buzzing around. I can tell that, not because she was Miss personality during it, but because not once did she fuss at the kids for being too loud! With Mom her silence speaks a thousand words! ;) And she even made that sound of clicking with her tongue while talking to the pups! That was a pretty big deal ... she is always very focused on the dogs but that is the first time she actually "talked" to them.

When I was getting her dressed for the day on Thanksgiving I changed up the order in which I do things so it did not go very smoothly, so much so that she fussed at me saying, "WHAT ARE YOU DOING?" I love when she is passionate like that (even if it means getting yelled out) because it makes her seem so much more alive!

Julian and Shari came over Sunday and her face really lit up when she saw Julian. She seemed to sleep through the visit but I know she enjoyed listening to his voice because she rested with such a look of content on her face. I may have been imagining things but after he left she seemed mad AT ME for a while ... like it was my fault he left!! ;)

Today the Priest came and prayed with Mom, it was nice for her to get that blessing. When I told her he was coming she seemed excited but I think she forgot to put on her hospitable hat when he got here because she was not very friendly, at least she was respectful while he said the prayers though.

I am looking forward to Mom sitting in the recliner with us at Christmas. She seems to like the tree alot. It just feels so homey in the living room with her sitting there. I might have mentioned this before but we are pretty sure Mom believes she is in her house and we are the servants ... but I like that she feels that way, she deserves servants!

I have really gotten tuned into her to the point that when she grumbles or tries to talk I can figure out what she does not like based on what I know she likes or by the differences in the way she "tells" me. Once in a while I do not necessarily ever figure out what is bothering her but she gets so tired of me messing with her and talking in that high pitched voice like I would with a baby that she just shuts her eyes and pretends she is asleep!

If I knew then what I know now ...

Okay so I had an email today from someone thinking that my last blog was discouraging nursing homes and assisted living places. That could not be farther from the truth and anyone that says anything to me about having Mom live here will also say I say that as much as I think having a parent with you is great, I do not question the decision to use a facility. I believe we all do the best we can based on the information and resources we have at the time and if you have to work or want to have a career, that is what you do. I do not so I choose this path but if this situation became more than I could handle Mom would go to a NH. With that said, this blog is my story, my journey, it is not a "how to" or a "you should", etc.

In the Fall of 2010 Mom was in the nursing home in Matador and my brother was moving to take a job. I had been staying in Roaring Springs to be close to Mom but it was not feasible anymore. That would leave Mom out there with none of us close by and I struggled with that. It was about that time there was a program about "The Disposable Generation" on TV and at that point Louis and I knew we had to try to move Mom to a place closer to us so that I could visit regularly ... I mean it was the right thing to do and I was a dutiful daughter.

So we moved her. I sure did not like doing that visiting thing much, it was boring, I had a million other things to do, she did not know me, she seemed to not care that I was there, and really maybe it seemed like kind of a waste of time. But as time went on I began to realize how my brother Julian was right. When she stayed with him in Roaring Springs he so wanted people to make more of an effort to come see Mom. He would say that it does not seem like it when you only see her for an hour or two once in a while, but that there is so much more to Mom than we gave her credit for. I am not sure how I really felt about his analysis of Mom but I did know that she did not seem to know me when I went to RS, although she did seem glad to see me, she did not talk much. I never felt like it mattered that I was there and Julian would say, "No, she likes having company". I just thought he was bound and determined to make her something she was not.

So now that Mom and I have gotten so close, I ache some for Julian because now I know how he must have felt, how frustrating it was to try to make people believe more in Mom ... to believe that it is not about us but about our Mom. Yes sometimes it is uncomfortable and it may not fit into our schedules but really ... who is this about ... It is about Mom. And I guarantee you my Mom has more going on behind those eyes than you may think. Julian was right!

So in my last blog, the first paragraph represents me before I understood the elderly, and more importantly my Mom, and the second paragraph is me becoming more enlightened to the elderly, and more importantly my Mom. If you take anything away from it, learn from it, have a light bulb moment, that is great but if not that is okay, it is my journey so most certainly do not be offended.

The disposable generation?

It is a disposable era - disposable diapers, disposable bottles, disposable cameras, even disposable cell phones ... hmmmm ... disposable family members? Think again. It's already here. The elderly ... I mean the elderly person has nothing more to offer, right?

I don't look at them as disposable. I view them as human souls, ready and willing to make a difference given the chance. Love them. It seems simple enough, but it becomes more of a doing when they cannot really communicate and when they do it is gibberish. That's when love has to kick in. Be ready to give them the attention they need, make a conscious desire to love your people unconditionally. They may not be able to exactly place who you are but they do know they know you, they know that for one reason or another your presence brings a good energy to them, and it feels good to them to know you made it important to make time for them. At this time in their lives this is ALL they have to live for ... they live for that energy.

(Derived in part from an article by William J. Brown)

On Disciplining Kids according to Mom

My Mom maintained a philosophy when raising her kids and she passed it on to me when I had kids. At first I thought there is no way that it can apply to every situation but really it does.

"Unless it is morally wrong or will do physical harm never say No" - Mom

You see, if you think about it ... how often do you say No because that is the first thing that comes to your mind? It is lazy parenting because you do not want to put any thought into what your child is asking/doing or maybe it is just not convenient for you. My Mom felt that if you say No too often for no good reason your kids will not respect you, they will stop listening. You probably start sounding like Charlie Brown's teacher ... WAH WAH WAH WAH WAH!

You do not want your kids to stop listening to you! I have told this story in an earlier blog but it is one of my favorites.

Mom tells of how she was just a very little girl and she was walking the path from the house to the barn. Her Mother looked out the kitchen window and saw a rattlesnake right in front of her in the path. Grandmother yelled, "Grace Laverne Tilson you stop right where you are!" Because my Grandmother was not the type to rattle off "No" at the drop of a hat without good reason my Mother respected her and knew she always had her best interests at heart ... so she stopped dead in her tracks She did not move until Granddaddy came and killed the snake. I am willing to bet there are many young kids these days that would have gotten bit by that snake.

What a rebel I am!

So we tried going along with the hospice nurse and Mom stayed in bed from Friday PM until this morning and it was the most depressing thing. I do not think Mom liked it either. It was unbelievable the battle that was going on inside of me, it consumed me all day Saturday and so all I did was lay around either on the couch or in the bed next to Mom. Every time I went in her room I kept searching her eyes for something that would tell me that she was relieved that we were not making her get up and that she was very content just laying there in her room. It was not there ... all I saw in her eyes, that seemed to have tears in them, was confusion. I do not think she understood why everything changed. She seemed so sad. So this morning I made an executive decision ... I believe if Mom does not want to get up she will tell me, so Louis and I came up with a new schedule so that we are not shuffling her as much but she ends up being with us the same amount of time.

I get her up around noon, do the morning routine of fixing her hair, washing her face and brushing her teeth, if she will open her mouth! I think she is afraid the toothpaste is a form of nourishment I am trying to trick her into eating! ; ) Then we go to the kitchen and I mix up her pudding concoction of medicine, hold it up to her mouth a few times, trying to get her to take it, and it ends up in the garbage disposal. Then I fix her cereal with banana, hold a bite up to her mouth and discuss the value of food to convince her to unclench her teeth, and then it ends up in the garbage disposal. Then I fix her something to drink and maaaaaybe she will drink it or maybe I will put it in the sink too. It may all seem like a waste of time but I do not think it is and I think she likes the routine.

Then Mom watches Mass. After that Louis puts her in the recliner and there she sits until the evening. She seems so happy and content when she is there because she is where the action is. She does sleep a lot but I still think she is engaged in what we are doing and when we are talking. When I asked her earlier if she was ready to go get ready for bed she said "No" so I let her hang out longer until she agreed she was ready.

I believe that when Mom is ready to go and God is ready for her she will go but I just cannot see letting her lay in that bed waiting to die. And so unless she takes a drastic turn for the worse she will be up with us during the day just hanging out. I cannot bear the thought of her laying in that bed while we are having Holiday celebrations, hopefully she will stay healthy enough that we can still get her up when that time comes. Today was a very happy day!!

Here is a picture of Mom and Megan. And a picture of Mom watching the Cowboys play today ... she tunes in to the sports!

Things Mom taught me ...

My brother Ray made this card and sent it to me. It is a picture of my Mom with one of her philosophies. It has probably been my number one survival tactic since junior high when I went to her about a bully of sorts in my class and she gave me these words of wisdom. It worked for me then and it has worked for me many times since! I have learned so many things like this from my Mom. I will post them as I think of them!

And I love that my brother summed it up with the word Serenity because we should all hope and strive to be in a state of serenity but to be there you cannot let other people get to you.

Looking back ...

My beautiful Mom ...

The hospice nurse was here today to look at Mom's hand. Over her knuckles it was swollen up like a balloon, scary looking! Brenda is Mom's nurse and she is also the Owner/Administrator of the Hospice service I use. She is wonderful ... she drove probably 2 hrs out of her way to see Mom. But not just for that reason, she is just super nice and caring and knowledgeable! She feels like we probably need to start limiting the amount of time we are getting Mom in and out of bed. Since Mom is so limp and not willing to help when we try to move her she said not only is that her trying to tell us to let her be but it raises the risk of her or us getting hurt. Plus since Mom just sleeps in the recliner now and does not interact it is probably more comfortable for her to stay in her world (her room).

She also said the swelling is normal at this time due to the circulation starting to slow down and so the swelling will pop up in different places at different times. She sees all of these "signs" that say Mom is declining but I am definitely in a state of denial if she is. I see what Brenda sees but if I get one smile or one answer to a question from Mom I convince myself she is on the rebound.

Brenda really bragged on the environment I have created for her in her room ... she said she just wished all of her patients could have it so nice. That made me feel good. I cannot imagine doing it any other way but Brenda said what I do is way above and beyond what she sees for other patients. She said no matter what happens I should never doubt for a minute that I have done everything and more for Mom and the rest is just part of the natural process. I am sure the memory of what Brenda and the other nurses and aides tell me will be nice to refer back to if I ever find myself doing the woulda, coulda, shoulda!

Mom and Laverne

Mom and Ray

Mom and I

Mom, Julian, Bunni (the baby) and I

Mom, Dad and Lamar

Mom, Dad and Steve (with Stevie Lynn)

She is so funny ...

Mom not eating much at all, drinking, or taking her medicine, is obviously not taking the spunk out of her. I was getting her ready for bed and I had an unusual situation that I guess did not fit into the time she has allotted me for that because when it went on and on she said "Okay, Okay, Okay!" And then when I was adjusting her pj's I explained that I was trying to make sure she was comfortable. I said, "I have to make sure you are comfortable because you are the Queen in this house huh?" And she said "Yea" with a tone that would make you think of a teenager saying "DUH"! She is such a joy to have here! I cherish this time with her so much.

I went shopping for warmer clothes for her today and when I told her I was going to do that she lit up like a light bulb and said "Yeah, Okay!" I mean, HELLO, when you are a fashion maven and always have been like Mom, something as silly as being a little forgetful is not going to change that!!

The hardest stage ...

They say that the hardest time for a caregiver is when their person will not eat or drink. When I learned that while researching the process I thought unemotionally, "Come on people (the ones that say it is a hard stage) it is part of the process, stop being so emotional, deal with it, it will be fine!"

Then today I was walking to the garage, thinking about how Mom will not eat or drink and I felt so overwhelmed, "What if this is not part of the process, what if I am doing something wrong, what if she does not like my cooking, what if she is miserable, and I am calmly attributing it to the dreaded "process"." And then immediately I realized I am the "people" I mentioned above. I hate it when my Mom's voice rings in my ear, "Don't criticize someone if you have not walked a mile in their moccasins."

So yes this is a very difficult stage, most difficult I will now have to concur because this is the only stage where I am not able to fix it, work through it knowing I am doing my best, or make it better. I am supposed to be taking care of her! Isn't food and water a pretty important thing and I cannot even do that! All I can do is sit by and watch ... this stage can definitely bring about feelings of sadness that I have never had before.

I keep asking her if she is hungry, usually she says nothing, sometimes she says No, but she never says Yes.

And there is the sleep ... yes part of the process! I still have her on her same schedule, getting her up throughout the day, but all she does is sleep in her wheelchair or her recliner. I do ask her if she wants to get up and she usually says yes but if she says no I let her stay in bed longer. I do not let her stay long though because she will get too stiff. And then there is the issue of the bedsores! No eating, no protein, no healing, so more risk of bedsores. So can't let her lay around too much!! "No acting like a teenager Mom, get up, get up!" ;)

Last there is the detachment, she is very withdrawn ... hospice says they are letting go, doing business with God, they cannot focus on where they are going until they start letting go of what they are leaving behind. So I don't know what to think, I mean who really knows, right?

The Journey

The last couple of days Mom has been sleeping almost constantly. She will not eat or drink ... most of the time I cannot get her to take her medicine as it would require her to open her mouth. She is not sick, no fever or infection. My hospice info tells me these are signs of the end of her journey but I am not convinced because she smiled some today so we will see!

Not much new here!

Well I have not written much because all has been pretty uneventful. We are on a good schedule, Mom is very much at home. She has been a little grumpy today. :) I asked her if she was mad at me and she very sternly said "Yes I is!" Five minutes later I asked her if she was still mad at me and she got the most confused look on her face, like she was saying, "Why would I be mad at you?"

We are watching the Rangers play, Mom is very tuned into sports and Sunday Mass on TV. Anything else she seems pretty oblivious.

I liked this picture ... it made me think of my Dad. Ya know I think my Dad would have really liked Facebook! All of you who knew him, don't ya know he would have loved getting on it to see what was up with his friends so he could comment on it next time he saw them. And of course posting his thoughts on things ... oh yeah!

Ventured out ...

Tuesday we both had to go with Jennifer so I got a sitter for Mom and we were gone for SEVEN hours! I liked the sitter, and she was highly recommended by Mom's nurse so I did not worry a bit while were gone but it was like coming home to a new baby the first time you leave them with a sitter. I came in the door and first thing I said is "Where is Mom?" I went to greet her and it was weird how much I really had missed her.

Wednesday I went to do some errands while Mom took a nap. I had a feeling I should have left right when she laid down but then I figured Louis would handle it okay, and if he really needed me he would call. Well sure enough she woke up and my phone rang. Louis asked, "When your Mom wakes up does she usually like a drink?" I hesitated, confused by the question, and he said "Well because I tried and she did not want any". So I thought to myself, well then I guess she does not like a drink when she wakes up. MEN! So I told him I was almost finished and I would be on my way home. I thought about it after we hung up and since I know Louis here is what I think went on in his head:

Mom wakes up ... he thinks, "Oh NO, now what do I do?" ... "I know, I will call Beverly and let her know" ... "Oh no I cannot do that, it is already too hard to get her to go do something, if I stress her out she won't go again" ... "But that still leaves me here with Grace and she is awake and I have not been properly trained in the 'wake-up from a nap' routine." ... "Oh okay, I know, I will just call and calmly ask her a question while mentioning that she is up. And she will come home without me even asking, I know because I read her like a book!!".

LOL ... and Louis I read you like a book! ;) Thanks though for making this adventure so easy for me every single day!

Wednesday and all day Thursday into Friday morning Mom would not eat, drink or take her medicine. And she was in the worst mood, literally clamping her jaw shut so I could not even hope to get anything in her mouth! I know it is okay if she does not eat or take meds once in awhile but it is so hard to shift gears from being the person who makes all of her decisions for her, thinking I know what is best for her, to letting her have a day to make her own decisions!

Friday was great, kids here, Mom is engaged and interested while we played Pictionary. Although I told Bunni, I was not sure if it was an engaged and interested, having a good time kind of mood or if it was an engaged and interested, you better not break anything kind of mood! Bunni said she was probably saying that it could be worse ... they could be playing charades, jumping up and down screaming!

Saturday Mom got up a little earlier than usual probably because of all the activity. She is in a good mood today though, very talkative and responsive! In this picture Jennifer just got finished painting her nails a very pretty red and was telling her how beautiful she is! Mom looked all embarrassed while at the same time loving the compliment with a slight smile and said "Oh I don't know".

“Here I am.”

I often find it hard to write because I feel like those that have been around my Mom will find my stories unbelievable or figments of my imagination brought about by my strong desire to "believe" my Mom is not as "gone" as some might think.

Do not get me wrong, sometimes I find myself telling myself to get a grip, Mom's brain is like the one in the picture I posted here early on. "No it is NOT", I say as I stomp my foot because Mom responds to so many things appropriately whether it is a couple of words or a smile or a shake of her head to convey disbelief or a smirk to tell me she thinks I am silly! She just cannot put sentences together. It is like the filament in a light bulb ... when the filament breaks the bulb goes out but that does not mean there is no electricity to feed the bulb it is just that the filament broke! In Mom's case that piece of "filament" that ensures that Mom's thoughts get to her vocal chords has broken. So imagine the frustration for Mom as she tries so hard to tell me something that I can tell is so important to her and I do not have a clue what she is saying. I can see the pain in her eyes and hear it in her voice. To really get Mom you have to be able to read her aura. Aura has been described as a map of the thoughts and feelings surrounding a person. And to really read that map it helps to know a person's history and personality before the disease. And you have to be in tune with their rhythm and the only way to do that is to be with them day in and day out. Just being around someone in bursts of small doses will leave you feeling as if there is nothing there but let me tell you there is! She will sometimes be interested and engaged in you and sometimes she will not. If she is not it is just because she is just not interested ... it does not mean that she is missing in action!

Just got Mom in bed. Before that she was sitting in her recliner and I said, "Mom are you ready to go to bed? Are you tired?" She said "No". I said "I know, you are so comfortable and enjoying the movie huh?" She said meekly, "Yea". I said, "I know but it is bedtime" Sounding defeated she said, "Okay". Louis goes to get her up and in defiance she goes stiff which makes her impossible to move. I said "Mom I need to get you up out of this chair while Louis is here because I cannot do it by myself". "Ok" she said and worked with him. You see she gets it, she understands what is going on! And one thing about Mom is if I approach things in a way that she is helping me she will comply.

We have talked about how having Mom here now is not much different than when she would visit years ago. She was always quiet, never talked much, and was a wonderful listener. Just like she did when we would sit around the dining room table in RS and I would be talking to Dad about some thing and she never talked much but she would look at me and listen and her eyes told me how proud she was of me. It is the same now ... when there are conversations going on she will listen so intently and I will catch her looking at me, smiling, sometimes as if to say you are so funny and other times you are so smart.

So if you hear Mom chattering she has a reason. Maybe she is cold ... maybe she is wondering where we are ... maybe she does not like that the people in the movie are arguing ... maybe she is watching Sunday Mass and we are being too loud or talking ... maybe the dogs are being too rowdy! But anyway 95% of the time she has a reason and it is not just jabbering. The other 5% of the time we have become quite skilled at tuning it out! ; )

I was glad to see my thoughts verbalized in this book.

“Much of our loved one’s suffering is invisible, at least to the outside world. Sometimes we’re the only one who knows the pain is there, where it comes from and how severe it is. We try to explain it to others, but they aren’t around to witness it, day in and day out, the way we are. We stand alone along side our loved ones as the vessel holding in all the fear and sorrow and hurt.

We are the “holy watchers,” the keeper of the flame of love. Some day, just being there as caring witnesses is the most important gift we give.

Be with me dear God, as I say to my dear one, “Here I am.”

Pat Samples - Comfort and Be Comforted: Reflections for Caregivers

What does Alzheimer's take from you?

Everything you ever owned, everything you ever thought you would get, and things you never even thought about. It's a long, slow slide into darkness, with no hope of stopping.

A beautiful statue, left out in the elements, worn away, until it’s only the shape of a person but not really the person that once was. Alzheimer's ...it wears away the edges that made my Mom who she was, one who lived for her kids, her animals, and her rosebushes, and turned her into a person with a sometimes confused and sometimes fearful stare.

I often wonder what she is thinking about when she is staring off into space. It is not a blank or empty stare, it is a stare that is so full it makes me look up to just be sure I cannot see anything too. But as always all I see is a blank wall. I ask her sometimes, "What do you see?" or "What are you thinking?" and sometimes she will look at me so intently, it sometimes seems like she is trying to force whatever she is thinking into my brain. Other times it is as if she is saying that as much as she would like to tell me, she cannot. Maybe she is doing her personal business with God and so it is confidential.

Anyway, even though Alzheimer's is what it is I do feel like Mom is so much better then she was a couple of months ago. I don't know why! I have been researching her medication and so consequently decreasing some and eliminating some which may be helping. I do notify the Dr. with each change, he is very tolerant of me researching what works.

Or maybe it is that she not only feels at home, I often think she believes this is her home and we are just hanging out for awhile. There is an air about her that is hard to explain but even the dogs respond to her sometimes as if she is the pack leader. It is a regalness that is my Mom that she always had in the Roaring Springs house. I think it is that recliner ... it is the best seat in the house, it is the hub and she knows it is hers ... she has the power!

So stinkin' cute!

My Mom is so stinkin' cute! When I first started being my Mom's person almost 2 years ago I looked forward to the day when she knew I was her person and I do think it is here for sure. I have felt it for a long time but now it is different because I know that she knows it too.

Our relationship with me as her person started with the look that said ...
I will be polite but do not start acting like we really know each other.

And then it goes like this ...
Ok, you look familiar and best I can remember you were nice enough last time I saw you.

We advance to this ...
I am having issues, you may be my last hope!

Then finally ...
Oh there you are, all is right in my world!

There is something about the peace that comes over her face when I come into view that is ahhh-mazing! There is just no way I can feel frustrated with her for anything when I see that look! (And as we know she can be a toot sometimes) I am still not positive she remembers from time to time that I am her daughter but that is ok!

I do have a hard time when she gets into the chattering a lot! MOST of the time, as long as she is using her inside voice, I am okay with it, because I think she is talking in her own way. But sometimes it goes on and on and on, thank goodness not often though. Most of the time it starts in her sleep as if she is having a dream!

Mom is doing pretty well overall. We have conversations ... granted all she can give are one word, maybe two word, responses. But she totally follows what is being talked about. She has opinions, she enjoys the dogs but she does not hesitate to fuss at them when they get rowdy. Or tonight when I was telling her I would get her medicine and then we would get ready for bed. I wait for a response, I like to keep her participating in the conversations. OK? I said, silence ... OK? silence ... I am going to get your pudding and then we will go to bed, OK? Finally she said with sarcasm, OOOOOOOKAAAAAY! Some things never change right? Sometimes I have doubts if Mom even has Alzheimer's and her aphasia is being mistaken as ALZ. Or maybe it is because usually she is only in her room at night, the rest of the time she is up and about with us. Maybe that is keeping her from zoning out. It is so hard to tell! If she could talk I think her diagnosis would be different.

Birthday Party weekend!

We had a good weekend celebrating Louis and Jennifer's birthdays. Megan, John, Jennifer, Allison, Matthew, Braeden, Lexy, and Carissa were all here. Mom really seemed to enjoy the company and probably most of all some different faces.

Mom is on Hospice care now but that does not mean she is at deaths door by any means. Hospice is a higher level of care and attention than Home Health but with Hospice we let God's will be done without intervening except what is needed to make sure she is comfortable and not in pain. The philosophy of it is really not any different than what I was working from but being on Hospice care gets her an Aide out here 3x a week and a Nurse 2x a week. On Home Health she does not get near that much attention. They say that often times on Hospice, patients do better and live longer because they are not constantly poked and prodded! Plus when the time comes for Mom to complete this journey I am not required to call an ambulance to come get her, take her to the hospital where she will sit until ... On hospice I will call the RN who will come right out and Mom will be able to complete her journey and start a new one in her room with her stuff and her family close. How much nicer is that for her. When the Nurse was telling me about how Hospice works and to let her know if I was interested I said, "Ya know I feel like I must have missed something because I cannot see why I would not want this for Mom, why would I have to think about it?" And so it is ...

Mom sure has ups and downs ... sometimes she goes for days and will not eat or drink, barely wakes up, until I get to where I am thinking the end is imminent. I get all misty eyed when I am around her, she looks at me with a furrowed brow as if to say "Don't be sad, it is okay". And just about the time I start to consider calling everyone I wake her up the next morning and she is bright eyed and bushy tailed, hungry, cannot wait to get up, talking as much as she is capable of, smiling ... oh yes smiling as if to say, "Ha, I fooled ya, I am just fine!". And the cycle starts again, she will be wonderful for 2 or 3 days, so much so that I want to think SHE IS HEALED ... she is the first one in history to have reversed this terrible disease! And then once again she deteriorates and the strange behavior begins again like it did tonight! I am getting her ready for bed and she is yelling and fussing and so I start to sing. As usual that calms her but tonight only for a while. In a bit she is slapping the air in my direction saying "Shut-up, Shut-up, Shut-up!" That was so different for her. First of all when we were kids shut-up was as bad as any cuss word and second my singing always calms her. Hmmm maybe I was just really off key tonight! ; ) So we will see what tomorrow brings!

This is Mom dressed up for our company!

What insightful questions from such young boys!

My Grandsons Matthew and Braeden got here last night. They are 9 and 8 and when Mom has her Sundowner's chattering and yelling it makes them a little uncomfortable but they are getting much more used to it. So much so that they are asking questions and I like that, it shows so much maturity that such young boys would care to ask. When Mom started Matthew came in and said "Is she singing?". I said No. I am so disappointed that I did not say yes because I think it kind of scares Matthew and I think what he was trying to do is make it okay by confirming it was just her singing, very much out of tune but singing nonetheless. I mean Matthew is used to hearing singing out of tune from all of us! I did explain that what happens sometimes is when people get old they get a disease that affects their brain and so even though they can think something they cannot get it from their brain to their mouth and so it comes out like that. Braeden, without missing a beat said, "Does SHE know what she is saying?" I said yes. What insightful questions I thought! Maybe when she does it again I will say ya know Matthew, I think you are right, I think she is singing!

"Well why are you yelling?"

I hear Mom yelling and chattering and it has to be pretty loud for me to hear her in the office! So I go in there and get right up to her face and say "Mom, what is wrong?". She stops and says "Nothing". I say, "Well why are you yelling?". And in the most innocent and serious tone she says, "I'm not". I just buried my head in her chest laughing! She is so stinking cute sometimes!

“She doesn’t know me, but I still know who she is.”

It was a busy morning, approximately 8:30 am, when an elderly gentleman, in his 80′s, arrived to have stitches removed from his thumb. He stated that he was in a hurry as he had an appointment at 9:00 am. I took his vital signs and had him take a seat, knowing it would be over an hour before someone would to able to see him.

I saw him looking at his watch and decided, since I was not busy with another patient, I would evaluate his wound. On exam, it was well healed, so I talked to one of the doctors, got the needed supplies to remove his sutures and redress his wound.

While taking care of his wound, we began to engage in conversation. I asked him if he had a doctor’s appointment this morning, as he was in such a hurry. The gentleman told me no, that he needed to go to the nursing home to eat breakfast with his wife. I then inquired as to her health. He told me that she had been there for a while and that she was a victim of Alzheimer Disease.

As we talked, and I finished dressing his wound, I asked if she would be worried if he was a bit late. He replied that she no longer knew who he was, that she had not recognized him in five years now.

I was surprised, and asked him. “And you still go every morning, even though she doesn’t know who you are?”

He smiled as he patted my hand and said. “She doesn’t know me, but I still know who she is.” Author Unknown

I remember you with my heart ...

Jennifer and Mom




I wonder who decided that a person's worth was measured by what they do and not who they are. Maybe nobody did, maybe this is just some rule we impose on ourselves. Or maybe this is something I have imposed on myself. Most of the time I am ruled by my heart and when I do that I feel like taking care of my Mom is a valuable thing. But then there are times, not often but none the less overwhelming, when I let my head do the ruling. It is those times that I put too much value on what a person does out there ... in the world, in the workplace, instead of what you do in the home and with your family. And so then my self esteem plummets and I do the ugly cry and I tell Louis I feel like I do not have anything to contribute to the conversation because all I do is change diapers all day. And he says I do not think that, we have conversations, you stay connected to the news and you read, we have things to talk about. He is right I know ...

One thing that I do notice is how caught up I get in Mom and the little things she does and says, the things she says with her eyes. But those things are hard to share with people that do not have a similar experience. When we talk about things in the workplace pretty much anyone can relate at some level, have something to compare it to. I compare talking about my Mom to talking about workplace issues with someone who has never worked outside the home, or talking about your new baby with someone who has never had kids.

If you are around my Mom for less than 72 hours or you have never cared for someone with Alzheimers it will be pretty hard for you to buy into my stories about her. It will be easy for you to think, "There is no way, I have been around Grace, there is nothing there, she is out of it, she does not have the cognitive ability to understand that." I can totally understand my brother's frustration now when he took care of my Mom. He had these experiences with her and he wanted so badly for family to believe that there was a lot more to Mom than meets the eyes. I was guilty of sometimes feeling like he wanted so badly for that to be the case that he imagined her having moments of such clarity and humor. I have learned that he was right because she still has those moments, there is so much behind those eyes if you look deep enough. And she is much farther along in the disease now than she was then.

I posted a poem earlier in the blog and here it is again. I love it because it so clearly says what I believe is in Mom's eyes when family comes around. I have always told people that she may not remember who you are but I think she remembers that you represent a good feeling and a good memory. I was just not talented enough to put it in a poem.

I remember you with my heart.
My mind can't say your name.
I can’t recall where I knew you,
or who you are,
or who I am.
Maybe I grew up with you.
Maybe we were family together.
Did we walk together yesterday?
There’s something wrong -
with my memory.
But I do know you.
I know I know you.
I know I love you.
I know how you made me feel.
I remember the feelings -
we had together.
My heart remembers.
It cries out in loneliness for you.
For the feelings you give me now.
Today, I’m happy that you have come.
When you leave -
my mind will not remember -
that you were here.
But my heart still remembers.
Remembers the feeling of warmth
and love returned.
Remembers that I am less lonely -
and happier today -
because you have come.
Please, please don’t forget me.
Please don’t stay away just
because of how my mind works.
I can still feel you.
I can still remember you with my heart.
A Memory of the heart is really -
the most important memory of all.

Author Unknown

Love Letter August 9, 1944 - Before E-Mail there was V-Mail

Laverne: Dad always spoke Polish when talking to his ma on the telephone.

Me: In this letter Dad talks about V-Mail being so informal as compared to the handwritten letter. He was wise beyond his time, he knew how detrimental it could be to become reliant on V-Mail, an earlier form of E-Mail.

V-mail, short for Victory Mail, is a hybrid mail process used during the Second World War in America as the primary and secure method to correspond with soldiers stationed abroad. To reduce the logistics of transferring an original letter across the military postal system, a V-mail letter would be censored, copied to film, and printed back to paper upon arrival at its destination.

The picture above is of my Grandmother Zabielski. My Dad was always so respectful of his Ma. They say you can tell a lot about a man by the way he treats his mother. I remember when Grandmother got old and senile (that is what they called it back then) and she came to live with Mom and Dad. Mom took care of her because Dad worked. That played an important part in my decision to have Mom come here to live. I felt like she earned some pennies from Heaven for taking care of Grandmother and so she deserved a chance to cash them in.


9 August 1944
India

Dearest Grace,

I received your letter dated July 16 and I sure did find it a very welcome and interesting letter.

I started to write you a letter last night on V-mail, but it seemed to me very informal to write in V-mail. In the second place, half way finished with your letter I ran out of ink so I postponed it till today.

They had some Sunken Gardens up at San Angelo and I really thought they were beautiful. I know what you mean when you describe those at San Antonio.

I know that Lt’s are wolfs also, and now that incident that you mentioned convinces me that I was right.

Last night after work I went to see our Squadron play the M.P.’s baseball team. We won the game 2 to 1. After that I started to write you a letter but could not finish it. I’m sorry. After that I went to a show. Had a little trouble cause they announced all men in overalls would have to leave the show and so all the men in overalls left and the guys who were dressed in Khakis left also. The guys in khaki uniforms did not go back until they allowed the guys in overalls in. They finally let every one in.

They guys were sure mad cause they didn’t mind dressing up in their dress clothes in public cause then you are living up to the standards of our Army, but when they made us dress in dress clothes in the field where no public is allowed sure made the men angry.

Nothing more to say only that I am well and healthy and I sure do miss you. I wish that you were here so I could hug and squeeze you till you say stop. Honey, do you miss me as much as I miss you?

How is every one at home? Well and happy, I hope. Did you hear from W.R. lately?

So, honey, I’ll close with love and yours, always,
Ray

P.S. Enclosed is a clipping on why I am now overseas.

Times like these ...

Times like this make it all worth it!

It does not happen often that Mom is affectionate but when she is she reaches out her hand. Life with Mom is a roller coaster of emotions. Here is how today went and you will see what I mean. This is a pretty typical day.

This morning I was in tears because once in awhile I get overwhelmed with the feeling that I do not take very good care of Mom. I know I am good with her mentally and emotionally but physically it seems to be one thing after another. Bunni convinced me that moving her here was still the best thing for her ... then we laughed about whatever it is we laugh at (only we think we are funny) and then I moved on to the business at hand.

Mom was not in a great mood this AM, actually she was a handful! She was watching her movie and yelling at it ... I kept telling her, "It is okay, it is just a movie." I think she was upset because Gus was talking to another woman! Finally I said, "Mom I think you need to watch some church!" Louis busted out laughing from the office! I turned it to my pre-recorded Sunday Mass and the first thing that is said is "... acknowledge your sins and ask forgiveness ... " I laughed and said "See Mom!" She totally calmed and tuned in to that Mass. I know those familiar prayers were a comfort to her.

Then it was shower time, it went as well as can be expected so when we were finished I asked her, "Mom are you mad at me?" And she loudly, without hesitation said, "YES!"

Needless to say, WE were now both ready for a nap! When she woke up she had the sweetest smile on her face and when I asked her if she was ready to get up she so sweetly said, "Yea!" Hmmmm ... I wonder ... where is that woman I put in this bed? She is no where to be found.

We sit down to dinner and at one point she starts trying to get involved in the conversation, she stammers, "uh uh uh, ah ah ah, one one one, two two two, ah ah ah", and then with such pain in her eyes she manages to say, "I I I caaaaant s s s ay i i t. And I just want to cry, I say "I know Mom, I hate that aphasia, because I know you have so much you want to say". I can only imagine the wonderful conversations we could have, it breaks my heart. I talk to her but half the time she looks at me like she is thinking, "You are such a dork", or "You sure do talk a lot". ; )

Then we go for our walk and she is responsive and enthusiastic about it. She loves being outside so after our walk we always sit on the porch and watch the sunset. This is when she reaches out her hand.

Finally we come in and she sits in the big chair while I blog. Periodically she has a sundowner spell where I have to say, "Mom! Use your inside voice!" LOL!

I cannot underestimate how much taking care of an elderly parent with alzheimers is like taking care of a baby. Think of everything you do or did with a baby and that is what I do with Mom right down to tip-toeing into her room when she is asleep, where I have a small lamp on, and I check on her. And when she is so still, just to be sure, I watch for the rise and fall of her chest to make sure she is still breathing, just like I did with my daughters.

I frequent a page on Facebook for folks that take care of their parents. So many of them take their parents anger and ugliness personal. Ya know I have never done that because I know my Mom, she has never been angry at her kids, she was and I believe still is, so wonderful at unconditional love. That does not mean I do not have to speak up at times. I do sometimes say, "whatever Mom, you do not get to treat me like that", and I leave the room. I feel so sure she understands and feels remorse for it because there has not ever been a time that she has not been sweet and cooperative when I return.

And then it is bedtime, time to rest up, she says, so I can toy with you again tomorrow! Well no, she does not really say that but she is probably thinking it!

Same old, Same old ...

Well I have not written much lately because nothing has changed much, we are falling into a pretty good routine. The weather has been great so we have been able to go outside more and even take a walk up the road and back. Mom loves going outside, she does not want to come in.

She loves watching Lonesome Dove, it calms her almost as much as my singing does! I think she has a crush on Gus! The bad part about that is, while she is watching that I should do other things but I love that movie so I end up having a hard time working anywhere but the living room where the TV just so happens to be. The living room stays very clean though! If you have not seen it you must see it ... and you need to watch it at least twice because the second time you pick up on so much that you missed the first time.

I have been letting her call the shots more in regards to her schedule. I let her sleep later in the AM because she seems to be easier to work with than when she gets up early. To all my siblings, if we thought Mom was a morning person she was faking it! She is not a morning person!! Also, I am not stressing so much if she does not take her medicine right on time. Eventually she will work with me!

Well she is watching her movie so back to work ... let me see is there anything that needs to be done here in the living room ... hmmmmmm!

What Alzheimers does ...

This poem totally explains what I believe Mom feels.

I remember you with my heart.
My mind can't say your name.
I can’t recall where I knew you,
or who you are,
or who I am.
Maybe I grew up with you.
Maybe we were family together.
Did we walk together yesterday?
There’s something wrong -
with my memory.
But I do know you.
I know I know you.
I know I love you.
I know how you made me feel.
I remember the feelings -
we had together.
My heart remembers.
It cries out in loneliness for you.
For the feelings you give me now.
Today, I’m happy that you have come.
When you leave -
my mind will not remember -
that you were here.
But my heart still remembers.
Remembers the feeling of warmth
and love returned.
Remembers that I am less lonely -
and happier today -
because you have come.
Please, please don’t forget me.
Please don’t stay away just
because of how my mind works.
I can still feel you.
I can still remember you with my heart.
A Memory of the heart is really -
the most important memory of all.

(Original Author Unknown – named, revised and edited by Stan Berg 5/6/2008.)