The Lemon Bar Queen ūüćč The Book

Blog followers,

The Lemon Bar Queen, my memoir about my mom’s memory loss, is finally here. It dawned on me last week that I hadn’t let my blog followers know that it had been published. I’m very excited to share it with you.

This has been a two year labor of love. I’m so proud of how it turned out! We had the book launch the beginning of October and I’ve had two fun book signings at my hometown Dairy Queen and Caribou Coffee near my home in Plymouth.

I’ve had a wonderful response and I’m on my second printing. I’ve also met the nicest people in this process. I love hearing your own stories about my mom and about your own loved one. Yesterday, at my Caribou event, I met the sweetest woman. Her mother has been taking care of her dad in Texas. Her mom is struggling with his memory loss and the daughter is so far away. I completely understood her feelings. It’s hard not to get teary.

All your kind messages are saved in my “Thank You” folder. I’m so glad you’ve connected with the book.

If you’d like to order it, it’s currently on Amazon, Barnes and Noble, Kindle and Itasca Books of Minneapolis. I’m open to events and book clubs. I have seven book clubs on my calendar and I’m so excited to meet fellow readers.

Thank you for following along the last six years. Many of you have kept me afloat as I hope I’ve done the same for your journey.

If you have any questions or comments about the book, please reach out to me. I’d love to hear from you! ‚ô•ÔłŹ

Jodi

The Tree

I am hijacking my mom’s space just for today and I am writing about my dad. On Friday he will be gone ten long years. He would be 91 if he were still alive today. There is hardly a day, like my mom, that I don’t think about him.

After my dad died, my neighbors generously gave us a gift certificate and Steve and I purchased a beautiful flaming red, maple tree from Bachman’s. The three of us found the right spot in the yard and we planted and watered it and watched it grow for ten years. Steve and I argue on many occasions of the need for it to be pruned. I cringe of the thought of it being cut back, as if it were actually human. I finally allowed him to have a company prune it last year and admittedly, it looks much better. It is called, Papa’s Tree. ¬†On the base of the tree is this:

Now that I look at the tree, I realize that it sits perfectly¬†outside of the girls room. Looking over them with its long, hardy branches. It’s stood the test of bugs, windy days, pouring rain and our beagle, always wanting to urinate at the tree base. It’s a beauty and it reminds me of my dad everytime I look out the window or read on the deck. In the past few weeks, a cardinal has sat on its branches and watched me read. Not singing, but just watching.

It is hard to believe he left us ten years ago. I feel like he just walked me down the aisle, cradled Sophia in his arms and told Steve naughty jokes. There is a piece of him in my heart that will forever be imbedded. Right beside my mom.

I think that when we think of our loves ones we mostly think about the good things and there were many. My dad was also a complex man with many faults that we ourselves share in this complex world. No one is perfect. What I want to remember him for is this…

He once drove four hours round trip to deal with an unsavory car dealer who felt he was taking advantage of me. He was correct, I know now as an adult.

He also drove four hours round trip to help me change a tire on my tan escort that I drove into the ground as a young adult. I’m sorry about that Dad.

When he knew I was not making the wisest decision, he would type me a letter on his old, green typewriter. Tap Tap Tap. I can picture him at his old desk, coffee brewing near by, Pall Mall sitting in an ashtray.

He loved being a Papa, but only getting to watch Sophia grow to be four. Emme not getting to know my dad or his fierce love I can imagine he would have for his girls.

I remember after a long day, working in the farm fields, he’d get out of his tractor and shoot hoops with me on the basket attached to our garage. He loved watching me play sports, at times yelling things at me, like only a father will do. “Go Tiger!” I can imagine that he has a special spot, right above the clouds, watching his girls play their games. I sometimes wonder if I can hear him from up above.

I loved how fiercely he protected Mom, so concerned about her even though he knew he was dying of cancer right before our eyes. He was well aware of her memory issues.

I loved that he walked me down the aisle to marry his favorite son-in-law two weeks after he had open heart surgery. He left early but still was present and beaming that someone finally married me. Oh, Dad.

I was reminded of him weeks ago when a man I take care of hugged me goodbye. I could smell Aqua Velva on him and immediately thought of my Dad. Such a nostalgic smell.

I grew to understand his politics that we didn’t always share. I remember when we had a mock election for a president when I was in elementary school and I came home so happy that the man I voted for, won the school election. Jimmy Carter. He looked at me and didn’t say a word but I could tell on his face he was disappointed and upset. I wonder what he would think of our crazy world now.

I love that he picked me to be his girl. Out of all of the babies, he picked the fattest, two month old screamer with the big brown eyes.

I don’t miss his banging a cup for the waitress to bring him more coffee. I think that is the only thing I don’t miss. Tap, Tap, Tap. Just like the typewriter.

I hope he and mom are up there, where Emme thinks they are at. High above the clouds, finally together. I hope he watched me take care of Mom and was proud.

Miss you, Dad. xoxo

Jodi

 

 

 

 

The Second Year

It’s hard to believe that on Saturday, my mom has been gone two years. I have been consciously trying to not talk about her as much. The next two weeks will be difficult for me. In the span of the upcoming two weeks, it was her birthday (April 26th), anniversary of her death (May 6th), and Mothers’ Day (May 14th).

I was at Target today picking up things and there is a whole section of Mothers Day cards, spanning the whole row. I don’t necessarily think of cards or gifts for me, I think naturally of them for my mom. And the books I would buy her. I honestly hope the weeks go by fast.

In memory of her birthday this year, we again celebrated the day by giving away 100 free Blizzards and cones in our home town of Starbuck. She loved her Dairy Queen and in her confusion, she still remembered that it was a special place to her. The DQ is smaller, family owned and was voted WCCO viewers Best of Minnesota. They did discontinue the Snicker’s Blizzard, her favorite, but you can’t beat this special place. Thank you to all of you who came and to Carrie and staff who helped run everything. All tips went to respite care for families that could use a break in caregiving. Both of my parents would have loved this idea and its our second year putting it on.

On my off days and weekends, I have started to formulate my writings and timeline of the events that led up, starting with my dad’s death, the assisted living and finally her move to memory care. In this blog, I write a little about the past but mainly of  the days she spent in memory care. It has been very difficult to put it all down and to include all the factors that led up to it. I have boxes and boxes of papers, files, doctor orders, bank statements, cards and receipts that my husband would love for me to get rid of. It just sits there waiting for me to go through it all again, like I don’t remember how hard it was before. Its like ripping the scab off a wound and reliving the pain again. It brings up such sadness, anger, occasional hope, frustration, joy, grief and pain. I get frustrated with my writing and feel it is hardly good enough to be put out there. I am not a writer. My boss gave me a CD to listen to on writing and I know I make a lot of errors just listening to the CD. But I still keep going. I have about 65 pages completed, pre-memory care with much of it surrounding her beautiful home town and the help she received. Hence, the free Dairy Queens.

Grief.

I have come to believe that some sort of grief lives in everyone’s heart. Sometimes the space it occupies is just a tiny speck that you can hardly see or feel. It’s there but you don’t notice it. Other times, I feel the weight of grief taking up all the residence in my heart. Just sitting there. Heavy. I know it’s there and there are days I can’t shake it. It can occur at a stoplight, at a game, when I see a Client who may look like my parents, at the grocery store or especially writing. It’s hard to have both of your parents forever gone. I can’t bounce anything off of them or call them for advice. There are days that I need my dad and days that I need my mom. I feel like I need my mom more, just to answer my parenting questions or show me one last thing.

How did she always get merengue to turn out so well?

How did she turn out to be such a good parent when I constantly feel I miss the mark?

How did she know what was best for me and what would she do differently?

Did she worry all the time like I do? Did she care what other people thought about her or worried that a group of moms that maybe didn’t like her?

How did she keep so many balls in the air and how did she keep them from falling?

What was the key to her being so organized?

How did she know how I was feeling before I even knew it?

How did she deal with mean or unkind people?

Daughter questions I can’t ask her now. I wish I knew the answer to some of these.

I think that we will always be linked by love. A strong link.

It was love that started us off by both of them choosing to adopt me. Saving me.

It was love that kept us going through my elementary and high school years. We both survived and came out of it somewhat unscathed.

It was love watching me become a nurse, marry Steve, have her favorite girls and watch her grow old.

It was love watching me from her chair or bed but not quite knowing who I was most days. The Girl.

It was love saying goodbye to me and her family on that Wednesday morning at 4 am.

I miss her but it’s not like the The First Year.

“When you are sorrowful, look in your heart and you shall see that in truth, you are weeping for that which has been your delight.”

Kahlil Gibran

 

Jodi ‚̧ԳŹ

 

 

 

 

 

 

The Happy Tomorrow

While I was organizing my desk in my home office, I looked on my board where I keep special notes. Many are from friends with words of encouragement, special pictures and notes that I treasure. As I was moving something I saw my dad’s special note to me, half hanging off the board.

It’s worn, stained and proof that it has moved with me over the years. When my dad would write to me, I could tell what kind of advice I would get by just opening the envelope. If he was disappointed or upset with me, he would hand write a letter in his blocked, neat as a pin hand writing. He would let me know something of great importance and made sure I knew¬†his opinion. In all actuality, I most likely did a stupid thing and he was letting me know.

If I received a typewritten note, I knew that I was getting fatherly advice. I can picture him right now, setting at his very old typewriter with a steaming cup of coffee and a Pall Mall cigarette hanging half out of his mouth. I can see him with two fingers plunking at the keys, formulating a letter that would spell out his fatherly advice for me.

Many years after he died and we cleaned out Mom’s house, I looked for that typewriter. I knew it was in our attic but¬†it¬†was mistakenly thrown out.¬†Besides his bowling trophy, that is one thing I wish I had of his. All those letters typed on that old and dusty,¬†green¬†antique.

Below is the letter he typed. I know what he was talking about. I was 23 years old at the time. I was not in a great relationship, working nights while I went to nursing school, tired, having car problems, worried about things I could not control and we had a screaming match on the phone one night. I was frustrated with him not understanding what I was going through.

And then came the letter in the mail. I could tell it was typewritten through the envelope, but still apprehensive opening it. Here is what it said:

20170102_091739.jpg

Boy, do I miss him, even with¬†his handwritten letters.¬†It’s¬†wonderful advice¬†for the New Year 2017. Lets all have some happy tomorrows.

Jodi

 

The Piano Player

It’s been a long time since I’ve wanted to share a story. I know I wrote my last post in May and at that time,¬†it had been a year since my mom’s death and now it has been another six months without her. Time moves on.

Over the last few years I have been writing about her, I have shared stories about the holidays and many of the issues we went through. For many people, it is a time for family, being around our friends, good food and parties, faith and traditions. For others, it is a hard time mixed with sadness, grief and a sense of nostalgic meaning.

I have a fairly new hospice case, a sweet gentleman with a shy grin and a constant baseball cap on. This week it is a U of M cap, slightly tilted off to the side with a smudge of dirt on the front of it.

He is happy to see me and pats me on the back. I know we aren’t supposed to have favorites but in all honesty, I love coming to see him. Our banter has been the same over the past few weeks.

He: “You are here to set up my rat poison, I see.”

Me: “I see that you haven’t used your oxygen all week!”

I enter his warm kitchen and we sit down at the table. We talk a little and I start to set up his meds. I can tell he is watching me, just like my mom used to do. I can tell he is a little winded and he is telling me about riding a bike at the Y today. I warn him that he needs to keep that quiet or he will be kicked off of hospice. He gives me a mischievous grin. I grin right back.

I finish the medications and he is quiet. I know he has gone through a lot this year. It’s been hard for him and at times I know he struggles with family issues. Same issues I struggle with.

He confesses he is not excited about the holiday. I want to agree with him but I don’t. I just listen. He talks and I listen some more.

At the end of our visit he stands up and like he always does, goes to his beautiful baby grand piano. I have heard the story of the piano before.  After many years of admiring it at the home of one of his customers , he bartered a job for him and the customer let him have it. Unbeknownst to him, he got it home and it was built the same year he was born. He felt this was a sign and I agree.

He asks what I am in the mood for and I respond…holiday music. He starts to play, no sheet music and eyes shut. He plays a jazzy version of a song I can’t name but I recognize,¬†and then he¬†plays¬†Silent Night. I wish I could explain how beautiful it sounded. He is now breathless from playing but still refusing the oxygen I have encouraged. I could listen to him play all day, he is that good.

We get to the door, I am running behind on my¬†visits and need to go. I remind him I will be back the day after Christmas and he pauses. “That’s my anniversary!” I know he has been missing his wife, she has¬†been gone for a few years. He gives me a look that I recognize and he gives me a hug. I know how hard this is for him and all of us at the holidays. Loss, grief, longing and his own mortality.

He wishes me a Merry Christmas and I yell back to him…”Wear your oxygen!” He laughs.

The Piano Man almost moved me to tears on his snowy, cold sidewalk.

I have had friends lose their mother and their father this year. Friends have also lost their brothers and their sisters. Grandparents, neighbors, Aunts, Uncles. Thinking of all you who have lost a loved one this year.

Merry Christmas and Happy Holidays.

Jodi

 

 

 

The Healer

Last month, I bought a groupon for a massage/healer. Its the first groupon I have ever purchased and I love to get a massage, yet I wasn’t quite sure about the “healer” part of it. After a few emails back and forth with Kimberly, we set our appointment and I found out it was very close to my work. There is nothing better than a massage and I was excited to get one.

I had a morning appointment and I was a little apprehensive because I wasn’t quite sure where I was going. Her office¬†is shared with another office (a therapist) and I wasn’t sure if I was in the right place or not. I was starting to get a little nervous for some reason, almost worrying that I was the victim of a scam.

After waiting for about ten minutes, Kimberly came out and introduced herself. Her office was warm, inviting and smelled softly of¬† lavender. I was nervous and did not know what to expect but she put me at ease. She asked¬† if I would lie on the table and I could stay fully dressed. Huh? I didn’t need to get into a robe or crawl under the sheets?

She started to gently touch my feet and they suddenly became very warm. Actually, I became really warm all over. She was doing some reflexology on my feet and it felt really good. If you have every had your feet massaged, you know the feeling. In the mean time she put something in my hands to hold, almost like a small upright weight. I’m sure she told me what they were, but I don’t remember. Almost like a tuning fork?

I’m now wondering what kind of groupon I have purchased but yet her rubbing my feet is pure¬†heaven. Kimberly starts by saying, “When you walked in, so did a small, older woman with permed hair”. She asked if my mom had died recently and I told her she has been gone since May of last year.

“You are not your mother’s child”. I am confused. I said that I was my mother’s child and then I remembered (duh) that I am adopted. Its not something that I always carry with me or think about. She is quiet for a while and started to talk about the cosmic world and energy. “Did it take a long time for¬†your parents to adopt¬†you?” I answered that she tried for twenty years to have children but was not successful. She said that her being unsuccessful was meant to be and her adopting my brother and I was the cosmic universal¬†plan. I was trying to take all of this in…trying to believe¬†but having a very confusing conversation in my head. Do I believe this? She went on to say that it was meant to be that she brought you up and loved you¬†in this world and that you helped her¬†gracefully¬†leave this world. She asked if I knew what this meant.

I did.

Now she has my attention.

All this time she is gently touching my hip bones, my ear lobes, my forehead…I feel like my body is floating. I was trying to tell Steve that I was light as a feather. No pun intended. It was like whatever she was doing, my sadness and worry¬†was leaving. Its very hard to articulate.

She also stated that my mom likes to sit in Emme’s chair at night. Now I’m a little scared. My last story that I wrote about was Emme’s chair. For the past few months she has been having bad dreams. For a week straight, she woke up in the middle of the night scared. I’m not sure of what is causing her¬†distress. Its been hard for her and I wasn’t going to tell¬†Kimberly anything but I shared with her Emme’s issue with her room. She told me that your mom, Emme’s Grandma, watches out for her and that she also loves your kitchen. I told her, that would make sense, my mom was a baker/cook her whole life and loved our kitchen. Kimberly stated that I could talk to my mom and to tell her to visit during the day vs the night, if it is scaring Emme. She feels that Emme is very sensitive to things we can not see. Super. Like that doesn’t freak me out at all.

“Your mom also sends you love.” And then I can feel that warm tears are starting to flow. She told me that she has crossed over and that she has a very important job. Her job is to take care of a big, beautiful¬†garden and that she is the “greeter” for people that have crossed over. She waits in a tunnel and greets family and friends. Wow, that is a lot to take in.

She knew that my dad¬†has been¬†gone for a while and that his job was to help all of the vets cross over. She also asked if our lights go on and off. Ok…that freaked me out. I’ve shared with a few of you that our sun room lights go on and off on command. This thoroughly freaks out¬†only one person in our family. Me.

She laughed a little and said that he is a character (indeed) and that if it bothers you, he will stop. That was absolutely crazy that she knew that. I’m ok with it. If my family doesn’t mind, I guess he can continue.

We talked about other things; she picked up that I help people cross over. I laughed a little because I hoped she didn’t think that I really “cross” people over. She also laughed and said that I knew what she meant. She wanted to be sure that people didn’t attach themselves to me. Ok, I’m freaked out again.

Finally, our visit of¬†over an¬†hour, was over. I’d like to think of myself as very neutral thinking when it comes to healing, psychic things and the unknown. I think all nurses have seen their fair share of strange, unexplainable things. Myself included.

I think she lifted my soul a little, made me more peaceful and I kept thinking of her conversation. Sure, its easy to read about someone, maybe she read parts of my blog but some things I do not talk about. She described my mom to a tee and stated she is always around. That I still could talk to her and she would hear me. That gave me peace.

So we have talked since then. I asked her not to sit in Emme’s chair at night¬†but to still watch out for her. I told her its ok to hang in our kitchen, I like that image. I told my dad that my girls think its funny, I will get used to his playfulness. Someday. Well, not really.

In the end, I never got a “massage” but had a bit of healing that was unexpected.¬† If you need her card, let me know. She was a healer.

Jodi

 

 

The Roommate

Just for today, I’m not writing about Mom…I’m writing about her roommate.

I have just come back from a beautiful break with my family and I have not talked to my mom in over a week. I know that she is well cared for and I have not worried about her, though I have missed our banter back and forth.

So today after work, I had headed to Mom’s to bring her a treat. The good thing about memory loss is that I don’t think she even remembered I was gone. She gave me a big smile and I told her that we went to the lake and I showed her the video of Sophia getting up on water skis. She needed to get to bed and so we went.

I opened up her bedroom door and waved to her roommate and I did not get a response. I brought Mom to her chair and I went over to say hello to her. I could tell right away she had a stroke and I wiped the drool from her face. Half of her face gave me a smile and I know the nurse could not tell me much. There was a lone chair sitting by her bed and I know that someone had most likely used it today.

I don’t know much about Mom’s roommate but I know that she is beautiful, sweet, well dressed and always worried about Mom, especially when she came back from the hospital. Always worried about her and telling me about her cough.

I love to see her pictures on the wall of a much different looking woman, cheeks heavier, hair high and very blonde and with her handsome husband. I know that her sister has faithfully taken her out for lunch every Thursday. Her life, like Mom’s vastly different than it used to be.

My girls quickly formed a pact that they pretended to be her grandchildren. They would come in her room, shout a hello to her and Sophia would sit in her chair while she was in bed and they would discuss Mom. I loved that little relationship that they formed with her. I think children are always a highlight for the elderly. Remembering days that have long passed and how much noise they make, especially my girls.

I think Mom could not have found a better roommate and I also have enjoyed my time with her. I always gave her a mini snicker of Mom’s and she would make a basket with the wrapper. Twice, I have watched her fall while I was in the room. She was a sneaky one, transferring herself into bed when she should have waited. One time, she would have broken her wrist but I saw her out of the corner of my eye and picked her up right away, knowing it is sometimes an instinct to help when I shouldn’t at Mom’s place. I scold her kindly and tell her she has to wait! No more falls.

Now, her face is pale, her beautiful face drooping and she is coughing and no one is around. It reminds me of my nursing home days and wanting to be every where as a nurse and not being able to. I went to get her nurse and they helped her get comfortable, my Mom not even realizing what is going on. For a brief moment, I get to hold her hand. It’s always hard for me when family is not there and you are the only person with them. Knowing that her time is limited, I hope that she gets comfortable quickly.

Life changes so quickly…eight days ago my girls saw their grandma before vacation and got to talk to their grandma’s roommate. A kind and gentle woman that I hope finds peace and finds her handsome husband soon.

Jodi

The Words

Today, we decided as a family to visit Mom in her new room. It’s hard with our busy schedules to figure out the time for all four of us to come and visit. Each of the girls are bringing in something for Mom and I am excited to show them her new room and have her meet her sweet roommate.

When we arrive, she is in the bathroom with an aide and I can tell that she is not having a good day. The aide is very gentle and sweet with her and I can see a worried expression on her face. She quietly mouths to me, “Your Mom wants to die!”. Mom is sweaty, nervous and scratching her back. She is out of sorts.

When I moved Mom on Thursday, everything went very well, no problems with the move and it was great relief for me. As I was leaving that day, the woman from the beauty shop stopped me and asked if everything was alright with mom. I told her she was doing well and told her about her move. She told me that while fixing Mom’s hair, she kept stating, “I just want to die”. She told me it  really bothered her and she even told the nurses she was concerned about her. Mom was normally very funny, a little sarcastic and never made a fuss getting her hair done.

I actually had forgotten about the comment until today. She is now out of the bathroom and playing with Matilda, her stuffed dog and she has forgotten the girls names. I gently remind her and she seems a little better. Its getting time for supper and my family heads down the hallway. Mom decides she needs to go back to the bathroom and I take her. While we are in there, again she states, “Why won’t God just take me?” and “I just want to die”. She is quiet and I can tell the fog of this disease comes over her. She is even confused about why I am there. I slip into nursing mode and ask her questions that she can’t answer. Do you hurt? Are you hungry? Did you take a nap today? None of the questions she can answer. As she sits there, she looks at me and pats my face and gives me the biggest sigh.

Those words are very powerful. Anyone that you have deeply loved so very much, you really are never prepared for those words. I can completely understand the statement 100%. I was telling Steve when we got home, what does she have to live for? I don’t mean to be insensitive about that but look at our own lives and if you can remember her own. Family, my dad, our activities, church, choir, gardening and her beloved grandchildren. There was never a time she wasn’t doing something. Thursday, the activity aide came into her room, inviting her to attend a “Cooking From Scratch” class. I encouraged mom to go, since this is what she did best. Cooking. Again, she said no, she would rather stay in her room. Life for her has slowed down to a crawl, or even stopped. It is hard for me to accept and in a way, she is even more accepting of it because she has forgotten.

We leave her room, and she is confused about supper and where it is. I walk with her and I feel so sad. Really sad. We get to her chair after moving people around and she is so very quiet. My kids have kissed her goodbye and I can tell the visitor is watching me across the table. She is a sister to a woman that sits with mom and I don’t want to converse with her. She watches as warm tears are coming down my face and I am mortified they have started. I kiss Mom goodbye and walk out to the desk. I catch Lisa, the nurse and ask her to watch over Mom tonight. Again, I cry in front of her and my family. I am more of a mess than my mother.

We get home tonight and there is a message to call my aunt, Mom’s sister. She is a comfort and we talk about not having Mom come to Easter and that I will most likely just go there. We talk about what Mom keeps telling me and how hard it is to hear.

I think that God is not ready for her just yet. I try and find the best in my days with her but today…this has been a really hard day. If you can send her good thoughts and prayers, I would be grateful.

The Smacker

Today, I had the best laugh. I arrived at Mom’s today, loaded with banana’s, a large Snicker bag and some new nylons. I have arrived at lunch time and she is surprised to see me. “Oh, its you!”. She looks nice and cozy, her hair looking lovely and she is banging her cup softly for some coffee. My Dad used to do the same thing and I how it mortified Ross, Mom and I when he did that. I reminded her that she can ask and not bang her cup. I feel like I am now the mother.

When I get up to leave to organize her room, she smacks me in the butt. She has been doing this lately and we both laugh, since it was a pretty hard smack. The nurse on duty catches me in the hallway and lets me know that she has been doing that to other residents. I’m somewhat surprised at this, since I know she would not hurt a fly. The nurse is not scolding, she is just concerned that another resident may think the gesture is not ok and may hit her. I know that some of her aides have enjoyed her small tap but the nurse is correct in thinking this may trigger something bigger.

As I come back to the table, Mom’s tablemate is just sitting down and I catch Mom reaching over to smack Janet on the arm. And it is a strong wind-up. I catch her and remind Mom, she needs to be gentle. Janet is much younger than my Mom and said she doesn’t mind but Janet’s mood also changes on a dime. She continues to pat Janet’s arm, harder than I would like.

After Mom is done with her meal, I sit down with her and try to explain to her this smacking business. Again, I feel I am in the wrong role. I don’t really want to have this conversation with her, but I am. It goes something like this:

Me: Mom, you have to be careful when you grab, slap, smack people. They may not know that you are just being friendly.

Mom: Where is my coffee?

Me: Did you hear me? It’s ok to smack me on the butt but try and not do it to someone else. (And I’m thinking, how is she going to know who is staff and who is a resident?)

Mom: Well, its time for me to get to bed. (It’s now 12:30 pm)

Me: Mom, don’t smack Janet, OK? You know who Janet is, she sits right by you.

Mom: Is that applesauce?

Me: Oh boy, this went well.

Keep in mind, the nurse was just concerned, as am I. In Mom’s building, there are many men and some very strong women. When she first arrived, someone pulled her down to the floor. I wasn’t upset, that is sometimes how things go. I am guessing it was on accident. My visit today is short, I’ve got so many errands to run.

As I get up to hug her she pinches my chin. I can tell she notes my surprise. She said, “You said I can’t hit you!”.

Oh, Mom…how I love you.

The List of Fifty

My reflections over the past week…both of us have had an¬†up and down last few weeks. I’m sure I could come up with fifty more.

1. Does today count? What you do today counts, no matter the memory or lack thereof.

2. When they do not recognize you, know that you are still in their brain history but as hard as it is, you may be lost, just for this day.

3. There is a silver lining to the disease, you just need to find it. My time with her is my silver lining.

4. Look at your loved ones hands and know how much they have accomplished in their lives.

5. God is always with Mom. She was/is a devoted Lutheran and I always catch her singing softly during their services.

6. I hate this disease.

7. When I am sad, I think of my Mom in her bikini top, picking raspberries in our garden and just enjoying her life.

8. Today was not a good day with Mom’s roommates’ daughter. I might need a glass of wine. No more on that subject.

9. Even if they don’t remember your visit, know that you made the effort to go. Mom told someone she hasn’t seen me in months!

10. Ask someone how they are doing. Many of us have parents with Parkinson’s, Alzheimer’s, Cancer or just parents that are getting older. To inquire means that you care.

11. It’s ok to cry. There are moments when I am sad and it will just hit me. Most times its in the parking lot and no one can see.

12. No day will be the same. Today, Mom was cranky even though I brought her sister to see her. We ate in a different dining room, which threw her and added to her confusion.

13. I am so proud we have raised over $20,000 for our Alzheimer’s Walk. All of you have made a difference and I hope a cure is in our future.

14. Find a neurologist who you connect with and trust. I love Mom’s doctor.

15.Your loved one is still here. I think that is so important.

16. Know that things will disappear in the memory care unit. I have talked about her remote, her toothpaste, her clothes and today it was her hand soap. These things will happen. Remember the story I wrote about when another resident was wearing Mom’s clothes?

17. Try to pick your battles. My battle right now is Medical Assistance and understanding all of it. I never will.

18. Medical Assistance denied Mom this week. Go back to #17.

19. I will never understand how the brain works. She can answer a Wheel of Fortune puzzle but can’t remember her love of cooking or Sophia’s name.

20. Always be nice to the caregivers. There may be issues but they have the hardest job. I did the same thing for four years, before becoming a nurse.

21. The Alzheimer’s Association is a great place to ask questions. I have used them for many things.

22. We brought our new dog over to see her and she wasn’t thrilled. She loves her two stuffed dogs and I except that.

23.Trust that you are doing the best that you know how. I struggle with this on a weekly basis.

24. My mom is still “Super Mom” and I honor her for those days by being good to her right now.

25. You will find yourself bringing her stuffed animals on your travels. Some day I will find this funny, now I just worry about them getting lost.

26. Bring your children to see your loved one. My girls totally understand Mom’s loss and I hope this understanding will serve them well. They are also very patient with her, even when¬†she doesn’t remember their names.

27. Laugh, even though it really isn’t funny.

28. Sometimes I hate to go…and I know other people feel the same way.

29. Bingo in a memory care unit is, by far, the best event. False alarm bingo’s, missed numbers and overall craziness.

30. She always enjoys getting cards. Please keep continuing to send them. She really does love the connection still.

31. Snickers and coffee have never killed anyone. Well, I’m not 100% positive, but I’m pretty sure.

32. Anger. You are totally allowed to have this feeling.

33. Never state, “Do you remember when or this?”. I know how I feel when I don’t remember something, imagine their memory loss and not being able to keep up.

34. I have a love/hate relationship with the drug companies. They state it’s not a “cure all” medication but they almost make you feel guilty if you don’t have your loved one on them. Mom has been on Namenda and Aricept over the years and I haven’t seen one ounce of difference with her memory. But yet, I keep her on them. I am scared to take her off of them. And boy, do they make money.

35. She can forget who I am, but what bothers me the most of her loss, is her love of reading. Scrabble, word puzzles, books and writing letters. I hate that her love of reading is almost gone. She did read her devotional today, but it was slow reading.

36. If you are worried about your loved one driving, please have them tested. I think she still thinks she can drive.

37. We misplace the remote five times a week. Where does that thing go?

38. Holidays are hard and Easter is coming. She gets overwhelmed with the people and not knowing where she is at. This year, sadly, I may just celebrate with her at Clare Bridge. I hate that because holidays were her favorite time to cook and entertain.

39. She doesn’t cook any more. That almost bothers me as much as reading. Those of you that know her, know how much she could cook and bake.

40. You feel guilty about everything. It’s almost as bad as my kids. Am I completely screwing up her bills, taxes, paperwork or her life? I don’t think that ever goes away.

41. Remember, they had a busy life before their loss happened. I was looking through her 35 mm pictures this week, finishing a project. She looked so beautiful in her bathing suit, holding a stringer of fish. There were over 1,000 pictures of their happy life, before kids. I have sent the pictures away to be placed on a CD for her to look at.

42. Sometimes a hug just helps. When she is so confused and not having a great day, I just hug her and she calms down. We could all benefit from a hug, I think.

43. Have patience…some days are better than others regarding that.

44. When people come to see her, I try and tell her their names first. That way she is not embarrassed that she doesn’t remember their names.

45. Coffee, and in large amounts.

46. When you have a large network of friends and family, you have hit the jackpot. I am very thankful for the people that help my mother and I on a daily basis.

47. I become unglued when I order her briefs from Amazon and know how much they cost. Why didn’t I think of¬†and market adult briefs?

48. Never steal from a vulnerable adult…if you do, I will run you over with my car.

49. Tell her that you love her, even if you know she can’t understand or hear you.

50. Pray for a cure for this evil disease.

Jodi