Never Take It Personally

The purpose of this post was to write a disclaimer to all my family and friends. Please do not take anything I write personally.  I have been trying to filter my feelings so I don't hurt anyone else's.  However, the thing about words on paper that are written and not spoke orally is that sometimes, as I teach my students, the tone in which you hear the words in your head is not the way in which I say them in my head as I write them.  So please, do not take anything I say personally.

Speaking of taking things personally..........

The first thing you learn as a caregiver of someone with Alzheimer's Disease is that you are not suppose to take their abnormal behavior to heart.  This means that no matter how many times the patient tells you that she has not seen you in ages, your son stole money from her, you never ever visit or help out, don't take it personally.  These are signs that something is definitely amiss. Before my mom's diagnosis, she would often call me and tell me all about the things that her grandchildren did wrong at her house.

My mom and dad's dream house!  Built in 1977 

They didn't have the towels up properly on the towel rack.  They went to visit but left a huge mess for her to clean up.  They were borrowing things and never returning the.  The biggest red flag of all was when my mom called to tell me that my son had taken her vacuum and brought it out to the woods and now she could not find it.  Ironically, my mom at that time, only had a central vac and had no other vacuum. In later years we did buy her a regular upright vacuum but that had nothing to do with the one she thought was somewhere out in the woods.  Needless to say, it was frustrating. My mom would offer to let my daughter borrow her car to get to school as long as she (my mom) had the car back to go bowling on Friday nights.  No sooner would my daughter be out of the driveway, my mom would be calling me and asking me when her car was going to be returned. This became increasingly frustrated to me.

I guess the actual 'straw that broke the camel's back' or the thing that pushed me to say something is definitely wrong or we are going to have to move was the day she drove to my house and told me that my kids could not swim in her pool anymore because they left wet towels in her laundry.  The thing was, if you knew my mom, she was a fanatic about perfectly hung up towels and in now way were you to hang a towel on the fence.  It was rainy and windy that day.  The towels needed to be washed.  My son did put them in the laundry but my mom was not happy.  I remember that day clearly.  She came to my house.  Yelled at me about the kids and I had to calmly say to her that from that point forward, both me and my kids would not be going over to her house any more.  Something seemed to register with her and she looked at me and then started to cry.  At that moment, we both knew something was wrong, really really wrong.  I also knew that she didn't want to hurt her grandchildren!

My mom sat down.  I made coffee us both coffee. Together we made a plan. We called her doctor and made an appointment that we could both go to together.

Dave (6), Dan (5 months), and Jess (3) at Ma's in her kitchen

I knew with my brain that my mom was not acting like this to hurt us.  I knew she loved us and we were her world.  However, my heart was broken to think my children were going to think their grandmother didn't like them and thought they were being mean to her.

For a long, long time, I worried about how my children would be effected by events such as this. Unfortunately, my mom didn't have anything that could be fixed with pills or surgery.  She had a disease that she would not overcome. I can only hope that they remember all of the wonderful times that their "Ma" was devoted to them unconditionally because, after all, she was the best grandma that she knew how to be!

Time Doesn't Last Forever

Walking to my car after yesterday's visit, wiping away tears as I approached my car door, I realized that I now understand my mom. The strangest thing happened when I left her yesterday. My mom never looked at me or acknowledged I was there.  Yet, when I went to leave and I said my goodbyes, I reached out to hug her. She hugged me back and squeezed me harder than ever.  The whole ride home I was thinking about how stupid I had been for not 'figuring her out' before now or how I always gave more patience to everyone else but to her. As soon as I got home and began the evening chores, I was kicking myself for never realizing fully until that moment. I was also upset because I couldn't find hardly any pictures of just the two of us.

My mom and me on my wedding day! 6-6-1981

Yesterday when I got there, my mom was sleeping with her head on the arm of a recliner, but awoke as I was settling down to just 'be' with her. She looked at me, got up, and started walking around. I followed her to a chair in the hall and convinced her to sit with me. As the two of us sat alone, I tried to tell her about what was new with her grandchildren. Looking into her vacant eyes, I searched for just small glimmer of hope that she was listening to me tell her about what was going on in my life and my kids lives. I told her about how hard school is right now trying to adjust to new students.  I even told her about my adventures in the blogging world. Yet, every time I looked closely at her, I didn't see my mom.  I saw someone with no sparkle like she always had.  I truly became scared for the first time. The end stages of this dreaded disease are taking its toll on my mom. Looking around I could see now that the disease itself was winning.  It used to be that although she was in the nursing home and at times couldn't remember anything, she still looked like my mom.  She still laughed like my mom.  She listened to me like my mom.

Almost ten years ago, I wrote a letter to husband's mother thanking her for being the best mother in law anyone could ever have.  I told her about all of the things I loved about her.  The letter was written because we knew her time was to be short on this earth and I wanted to tell her these things while I still had the chance.  That's the funny thing about time.  We always think we have so much time. It was almost a gift to know that there was that last opportunity to tell her what was in my heart.  Two years ago I did the same thing with my aunt.  I sent her a card thanking her for being the best aunt that anyone could have ever had. So, why didn't I do that for my mom?

This past year I was struggling with a comment made to me about someone I love. At yoga one afternoon, my yoga instructor noticed that I was sad and we talked about it.  She told me to just put it out there in the universe and let it go. Sometimes of course it is easier to say than do. However, I did it. I made a general comment through Facebook and put it behind me. I woke up this morning before my alarm and knew that I had to do the same thing with my letter to my mom.  Just like I wrote the letter to my mother in law and the note to my aunt.

End of August 2017

Before I could finish this blog post, I had to leave for school. As I sat down to finish this blog post by adding a letter, my phone rang.  It was my mom's hospice nurse. We talked about the fact my mom isn't eating again and isn't drinking again.  They can no longer get her to take her medicine.  We made the decision to stop her meds and make sure that she has her morphine at night for now. She will have pain meds and anxiety meds as she needs them but no more of anything else.

The letter, I will write it.  I will bring it with me to our next visit.  I will sit with her and read it to her. I will hug her and hope that she hugs me back. Right now, I need a little time to process the past two days.  Sigh.........

Pieces of My Heart and the Guilt in My Brain!

There are many times when I leave after visiting my mom and I cry all the way home.  Today was no different.  My mom looks no longer like the mom that I knew for so long. She looks tired.  She looks very very tired.  As I sat with her today, I was looking for the sparkle she once had as she busily worked so hard to create beautiful memories for all of us. It is very ironic that those memories that she helped to create in my mind are probably the ones she has forgotten.
                           

My mom and my Aunt Karen are probably the strongest, most resilient, and most influential women that I have had for role models in my life. At one time my mom had so much love for us was so devoted to her grandchildren that she would work really hard to make sure that we had the best holidays.  When I was looking through pictures this morning, I came across this one of my aunt and my mom getting ready for Easter dinner one Easter Sunday.  My mom would make Easter baskets for every single person coming to dinner.  Not only did she have dinner perfectly prepared for us but on some occasions she would celebrate my birthday since my birthday often falls on or around Easter.  These two women are pieces in my heart that will remain there forever.  Today my heart feels like a puzzle with mixed up pieces.  I am missing these two women. Aunt Karen passed away two years ago but I still hear her voice in my head talking to me.  My mom, although still here on earth physically, is starting to move into those end stages that come with Alzheimer's.

I try to live my life so that I don't have regrets.  I try to make sure to avoid guilt because let's face it. Guilt drives us crazy and causes us so much stress it eventually causes health problems.  I've learned over the years to deal with guilt.
I was doing pretty good with tabling the guilt feelings for a long time.  However, today, I just wanted to sit with her longer.  I wanted so much to stay there and encourage her to nap while I stayed and held her hand or worked on my blanket. But, I had to leave because I have to go back to work.  Open House is tonight. Life sometimes just gets so busy.  I can't get there as often as I want and I can't do anything to help her more than I have been doing. Now's the time I wish I had visited her more when she was home.  I wish I had told her I loved her more when she was aware. For now, I will pick up the pieces of my heart, try my best to shake the guilt from my brain, and just finish my day.

Give Me a "T"!

Up until about three to four years ago, my mom could still recite all of her cheers that she had to learn in the late 50's when she was a cheerleader for Tunkhannock High School in Tunkhannock, PA.  I am so thankful to my Aunt Ann for taking my mom in during her teens years and making sure she made it through high school. My mom used to tell me she joined cheering so she could get out on school nights because if it was a school night and she wasn't involved in a school activity, she had better keep her you know what home!  My mom was a social butterfly back in her day for sure!  If you were to see her 1958 Senior Yearbook, you would agree as there are no pages unsigned by any of her classmates.  Well, maybe a few by a few females but not many!  My mom knew everyone and cherished being friends with all.  She never missed a class reunion either.  My mom would mark them on her calendar and was probably the first one to send back her RSVP to the planning committee.

The first time my mom attended her reunion after her diagnosis, I drove her to Pennsylvania so she could attend. My Aunt Karen took both my mom and myself to the reunion.  I was hesitant but it was just at the beginning of her diagnosis so I let my mom go to her reunion by herself.  We dropped her off at the door with instructions to meet us when it was over in the same spot.  Secretly I had contacted one of her classmates who agreed to help keep an eye on her so that my mom could enjoy her time but still be safe. My aunt and I went out to supper ourselves and visited until it was time to pick my mom up.

I remember my emotions during that trip.  I was so worried for my mom.  Yet, I was so happy for her at the same time.  Then I would be sad and cry while my aunt consoled me because I knew that this was would be the last reunion my mom could attend.  I knew that given the fact of her diagnosis and its development, she would not be attending her next reunion in five years.  

The other hard part about Alzheimer's is that I became the worried parent of a teenager basically.  I was the one that was wondering how she was doing.  Was anyone talking to her?  Did she even remember people?  My mom had always had such a fantastic memory.  Was she safe and having fun?  I remember my relief when we arrived to pick her up and one of her high school friends made sure to deliver to safely to us then she slipped me her email and phone number.

Five years after this, the invitation to the reunion was sent to my house instead of my mom's. I opened it to find that the planning committee had written notes inside asking how my mom was and letting me know they were thinking about her.  I never showed my mom because by then she wouldn't even be able to fathom what it was.  

Sometimes Life Gets in the Way

It has been my intention to write more than I have been this past week.  However, like the title says, sometimes life gets in the way. Starting back to school this year hasn't been as easy as in the past.  So many things to be worrying about and so many things have kept me from getting organized, leading to everyday feeling like I start out behind as soon as I open my eyes.  Over the past few months we've had an unexpected death in our family which means learning how to deal with the feelings that come along with someone passing too soon, medical concerns/conditions to worry about, a washing machine to replace, and I've had longtime bout with sinusitis/allergies etc to get over, which is still lingering even after six weeks. (And I never get sick so this is a real strange event for me!) I've been so tired that I pick up my knitting and hold it in my lap to start working on it and either fall asleep with it there or just hold it until it is time to go to bed.

Yet, I believe in thinking of the positive as much as possible so while all of these things have happened, there have been so many wonderful and fun times too.   We had a wonderful family vacation in August, shared with extended family at my favorite place in Maine.  My husband and I spent a weekend at Foxwoods and enjoyed three days of thinking we were in a far away resort. My second grandson started Kindergarten.  I spent a day at the PGA Dell Technologies Golf Tournament with my husband, daughter and her significant other. Many more weekend activities are already booked throughout the next couple months to continue enjoying times with family.

Through all of these times, the good and the not so good, nothing changes the fact that my mom won't understand any of it. Alzheimer's has taken away her concept of time. When I cannot visit her because of 'life getting in the way', she is unaware....or I hope she is anyway.  When I go visit her after not seeing her for a week, she doesn't appear to even know that I have not been to see her. My intention is to see her a couple times a week but sometimes it just doesn't work out that way.

So for now, life at this moment or this weekend is going to be about getting back on track so life stops getting in the way. It's time to make a path. Sorting through the laundry to finally get to wash, getting school lessons organized for the next week or two, cleaning the piles of stuff around the house, and hopefully visiting my mom. Because even though she doesn't know I have been there, I do, and she is not something that gets in my way. I just hope she knows it.

For now, I will forge a path and hopefully life won't get in the way next week!

"I'm a Survivor!"

My mom coins many phrases.  One of them she would say over and over was "Oh dear, bread and beer.  If I were married I wouldn't be here!".  She even had her nurse saying it with her.  Another one was in her own words. She would say, "I don't care.  I'll let Cindy worry about that!" (oh and how true that became.) I won't even go into how many times she would say, "Well, take me out back and shoot me!"  Her latest and most recent, before she stopped really talking with me, was to tell me , "I'm a survior."

As I start writing about topics, I carefully choose, something else usually pops into my head and I realize it has to be put in writing.  Yesterday, I visited my mom after school. When I got there she was eating an ice cream cone and enjoying it in her own little world. I got a cup of coffee and tried to tell her about the start of my new school year.  I told her all about the fact Ryan (her great-grandson) started 2nd grade this week.  I told her how his brother, Hendrik, was at his open house for Kindergarten.  She looked at me a couple of times but continued with her ice cream cone and then the 'twiddle pad' in front of her.  I tried to tell her that I haven't visited much because I have been sick. Eventually, I turned my attention to the other residents in the room and looked around realizing that almost all of the people in the day room were not there when my mom moved in.  My mom has made 'friends' who have come and gone.

I took some time this morning to look through some more pictures to match up with my future posts. My intention was to locate the pictures from Hurricane Agnes as I watch the news of the devastation in Texas from Harvey.  What I realized, as I looked through more pictures, is that my mom is truly a survivor.
There are pictures of her with lifelong friends. Friends whom are no longer with us here on earth.  There are pictures of difficult times that she lived through. There are pictures that remind me of how she struggled to give me the best of everything.  There are pictures of her, before this terrible disease changed the relationship she had with so many people.

Recently I met with her Care Team.  One of the comments that the director of the facility said was, "I don't know how she is still walking around!"  She had found my mom sleeping standing up while leaning on the end of the bed. At one time she wasn't eating or drinking. I received the phone call that she was going to be placed in hospice.  We discussed end of life care.  I cried everytime I got in the shower so no one could hear.  That was over a year ago. My mom has now started to eat more and drink more. Her physical heatlh is good, it's just her brain that is not. While she didn't understand what I was telling her yesterday, one thing is true. I do understand that with this disease all bets are off and she could decline at any moment....but for now......my mom is a survivor.  She most definitely is!