Lost and Found

Mom pushing her great granddaughter in her walker. 7/09

Mom being pushed in her wheelchair by her great granddaughters. 7/11

At some point most people with Alzheimer's Disease have problems with wandering or getting lost. Unfortunately, it can end badly. However, some of these stories, however troubling, are a bit amusing. They can be the red flags that signal a new look at keeping the person safe.  There was a time when my mother was able to follow a routine. On Friday mornings at 9:30, my father would go to the store to grocery shop or do errands. At 10:00, my mother would walk to get her hair done.

As her memory issues progressed and physically had more trouble, she needed a prompt to go at the right time and the assistance of an escort. She moved from walking, to the use of a walker, to use of a wheelchair. She got scolded several times for sitting in her walker and scooting along.  She had trouble remembering not to sit and scoot, so someone decided to take the seat off. But then she would forget and sit in it anyway. This was not a good thing.  In order for dad to continue his routine we hired an escort for mom. The aide would make sure mom safely got to her appointment on time. My father would pick her up after her appointment and walk with her back to the apartment.

Then on one day my father returned from the store to learn that mom was missing. When the aide went to get her, she was not in the apartment. She must have remembered to go to the hairdresser after my father left but had forgotten to wait for the escort. She never made it to the hairdresser. Eventually, a couple came home to their apartment to find my mother sitting in their living room and called the assisted living line. Mom was sitting on a couch in a stranger's apartment. She must have gotten lost,  got tired,  found an unlocked door,  went in and sat down. Once she was sitting on the couch, she couldn't get up. (She was at that time using a lift/recliner chair in their apt).  I'm not sure mom ever understood that she got lost. It didn't seem to upset her. It ended fine. Everyone made adjustments, including the couple who left their door unlocked.

It wasn't long after this that mom fell, broke her ankle and ended up in rehab and, ultimately, a permanent placement in the nursing home part of the complex. She has had an extremely hard time finding her room so she was often found in other people's bathrooms or beds - so much so they nicknamed her Goldilocks. It seems that after about a year this happens less frequently but there were months that went by that every time we came to visit mom, she was missing. This was a really upsetting phase but this, too, has seemed to pass. There was one evening when my dad came to visit and, not finding mom, they put out an alert for her. Security even went to dad's apartment to look for her in case she had made it up there. She was finally found in a staff bathroom. After that, she wore a sensor  for about six months. She doesn't try to escape as some do. She basically  has two thoughts:  "I want to lay down so my back feels better" or "I have to go to the bathroom". Now, we mostly find her sleeping in bed. Perhaps there will be GPS attachments for missing patients in the future.

Taking the keys away...

As my mother got older, she started to self-restrict her driving:
1. Drive only in good weather.
2. Drive only during daylight.
3. Stay close to home.

When we got to the point of no more long trips, which meant no more driving to my house 4+ hours away, my parents started to feel the restraint. My dad hadn't been driving for about five years when my mother stopped driving. He stopped driving because he kept getting lost. He got to the point that he couldn't find his way home. Before he stopped driving, he was the main driver. Taking on all the driving was a big challenge for Mom. She was comfortable as co- pilot. She was always good with directions so she would give Dad directions as he drove. Now she had to do it all, as Dad couldn't help with directions. Mom broke her ankle late in life which created lots of issues with her ankles so she was now wearing braces on both feet. My parents lived with my sister and near to my brother so they observed her driving and we tried to keep an eye on her driving ability.

It all started when my dad talked with my husband and really confessed that he had been keeping track of her driving mishaps, like hitting the curb, weaving, not staying in her lane, not stopping at a stop sign or stop light, close accidents. So, my husband talked to me and then, I talked with my dad, and then to my mom, and then to my siblings. We saw it coming and had done nothing. Now, it was time for Mom to stop driving but, "How do we do that?"

Of course, in front of my mom, my dad backed down and said she was a good driver. My mother was in complete denial. We asked her to talk to her doctor. He was no help, he told my sister that if they can see and walk then they can drive. He continually assured my mother that her memory issues were all age-related and that she was fine. No one wanted to take the keys away but my mother had no intention to stop driving. We decided to go through the Motor Vehicle Dept. We figured she couldn't pass the driving test so that would take care of it, but then what if she did? It was clear to me that in spite of possibly passing she was a hazard on the road and needed to stop driving. As it turned out, it takes months to set this up and there are forms to fill out by the doctor.  This was such a slow process that we acted before they did.

It took awhile before all the siblings were in agreement that this was the right decision. We happened to all be together planning my sister's wedding. The Alzheimer's was progressing, although no physician had actually said those words to Mom. She would make a decision and then change her mind, so less than two months from the wedding nothing had been finalized,  We got together and delegated everything. We tried very hard to honor her preferences. It was at this gathering, that we decided to take the keys away - together, as a family. We believed that my mother was a danger on the road, to herself, to her passengers, who by this time was only my father because no one else would drive with her. If she was with someone else who could drive, she didn't drive. She had the potential to have an accident in which someone could die, and this could affect another family, not just ours. We could no longer stand on the sidelines and let that happen. We had to stop it.

It was a God thing that we were all together. It felt like an intervention, and in some ways it was. Lots of tears by all, but we were able to communicate our concerns(again). She got upset and said, "So what do you want me to do?" and we answered with,"Stop driving and give Rick your keys".  She never drove again. It was really hard. She had a lot of anger towards me. Even though we all were there, it felt like she only saw me. It feels awful to have your mom angry with you. She stayed upset with me for a long time. It was a really difficult adjustment for my parents, one they struggled with and which precipitated their move to a progressive care retirement home.

It was clearly the right decision to take away the keys. We don't regret it but we do regret how hard it was on everyone. This situation above all others likely motivated me to write about living with Alzheimer's. I don't want my family to go through this. So when two people, my husband and/or two of my children decide the time is right, I will stop driving. This is for me. This is what I have decided. This is my guideline for when I will stop driving. This post is for me. This post if for my children.

About two years after this happened and with lots of open conversations with my father-in-law, at age 92, he decided on his own to stop driving. He knew the time was coming and he independently decided for himself that the time was right. That's the way to do it. He has adjusted very well and at age 93 continues to live in his own home. And I am so proud of him. I'm also thankful for the support of family around him who drive him to appointments and outings, making it possible for him to stay in his own home.

Happy 84th Birthday

Happy 84th Birthday Mom

My mom turns 84 today. She doesn't know it. Last week we gathered to celebrate. We had to think about what was her favorite dessert. It took the grandkids to remember. They recalled her asking after dinner, "anyone want ice cream?" and then, "anyone want ice cream with strawberries?" I don't remember her favorites anymore, well except for the color purple. My mother loves the color purple or as she called it, lavender. 


We celebrated with vanilla ice cream and strawberries. She fed herself and ate every bite! I think I'll try to bring strawberries all summer!  It's always good to see her, just sad. My Dad had been here visiting for a few days. She still knew him when we brought him back, for which we are so thankful. I got a smile, a hug and a "I love you too", which I absolutely cherish. The staff has put a Happy Birthday sign by her door. Maybe she'll get a few more smiles or a few more social interactions. Dad took her to the "Big Party" where all the May Birthdays and Anniversaries are celebrated on Friday. She had more ice cream and a cupcake. One cool discovery was that she can still read. She was able to read her birthday cards. We are pretty sure she doesn't comprehend what she reads, but she could still read.


Hope your day is happy, I miss you!

Happy's Mother's Day

This picture was taken 3 years ago when my mom was still able to travel to my house. She can't travel anymore. My mom is alone this Mother's Day. We used to make sure Dad stayed with her for holidays and special days.  Due to the progression of her Alzheimers, she doesn't know that it is Mother's Day.

It actually worked out to have my Dad visit for a few days. My sister visited mom and brought her flowers on Friday, when she picked Dad up. She won't miss us and she probably won't notice that Dad is gone. I sent her a card. I put this picture in it. I labeled everyone so if someone opens her card for her and reads it, they can point us out. She won't know who we are and she won't even recognize herself, but maybe she'll feel some love. It may lay unopened until we visit on Tuesday. We miss you mom so very much. We wish you were here today and I can't wait to give you a hug on Tuesday.

Too Little

 This post is written by my niece.

     Being the youngest grandchild has its pros and cons. Exclusive snuggling rights (that is, until the great-grandkids started coming), extra candy, free ice cream, and permission to cheat (ahem, “be helped”) on those tough family games. The downsides I usually complain about are the material ones—that the older kids got more years of presents, better trips, and so on. No one is paying for my college textbooks or cross-cultural experiences. When it's time for me to have kids, I'm not getting a new stroller from Nana and Papa. I'm not getting anything.

     But the worst part is that I missed out on the good memories. It's not all gone. I remember trips and events. I have some mental snapshots from Storyland and Sturbridge Village. Once we checked into a hotel just to use the swimming pool. I didn't get in trouble when I let the dog sleep in my bed. She called me her “little ray of sunshine”. But the memories that I have of my grandmother are experiences—trips and activities and an excessive amount of stuffed animals. They are more like pictures I've seen or stories I've been told more than anything else. I never got to know her, not who she was as a person. I don't remember deep conversations with her. I didn't get to learn from her like everyone else did. Mom says I did but I mean the bigger lessons, the life lessons that I couldn't understand then. I never asked her what it was like to play basketball in college, or how she met Papa, or what it was like to be a stay-at-home missionary. I don't know what she accomplished in her career, her political views, the funniest joke she told or her favorite food.

     My grandparents moved into my house while I was in high school. At this point, the early stages of Alzheimer's were starting to show, though it wasn't official yet. My brother and sister were away at school so they missed it—missed it as day by day it became more clear that something was wrong. Missed the blame games and the harsh words and seeing my mom in tears because her own mother accused her of lying straight to her face, and my father wanting so badly to give support to something he could not change. Out of all the things to miss out on, I would have chosen this piece of the story.

     But I didn't get to choose. Instead, I am stuck with all the bad memories. Like the time Mom made turkey cutlets and stuffing for my birthday. Nana asked for the delicious chicken recipe. That was so hard for my mother to hear because it was one of Nana's signature meals, and she should know better that it was turkey, not chicken. Mom said that Nana always used to make it for me because it was my favorite. It was so important to her that Nana knew it was turkey. I didn't have the heart to tell my mom that I only had a half a memory of Nana making it one time—I didn't know it was my favorite of her cooking. And I certainly couldn't tell the difference between turkey and chicken.

     The bad memories. Like the time Nana tried to make frozen French toast but really put garlic bread in the toaster and almost started a fire. And then ate the blackened pieces with syrup like nothing was wrong. Or the time there was a family intervention to take the car keys away. Or the time Papa said he was going to get a tape recorder so she could hear how crazy she sounded. Or the time she bleached my tie-dyed t-shirt because she thought it was dirty and apologized that she couldn't get the stains out. Those kinds of memories.

     I couldn't tell you exactly why I don't like going to visit my grandmother. Maybe it's because I don't see a point—she hasn't recognized me for awhile and she has no idea if we visit or not. Maybe it's because nursing homes are sad places and I have to realize that soon I could be going through this with my own parents, and eventually putting my family through it. I already feel bad for my future husband because I feel like this, this is asking too much of him. He shouldn't have to go through something like this. I am praying, at 20 years old, to die of cancer before I get this disease.

     But honestly, a lot of it is because it brings on the pain that I didn't know her like the rest of my family. I can't sit around the kitchen table or in the family room and talk about how great she was, and that makes me feel more isolated than anything. I guess I should be grateful that I'm spared most of the pain of saying goodbye to her, but I never got the joy of truly saying hello. I hate that I know she did so much for me, and I don't remember any of it. I guess that's one thing she and I have in common now—I don't remember who she used to be either.

Being a grandmother...

 

Mykayla with Great Nana

 I love, love, love being a grandma. My mom has been an awesome grandmother and great-grandmother. She is known as "Nana" or "Great Nana". She has inspired me to be a good grandma.  I am known as "Nonnie" which is what my first grandchild named me or "Grandma". We share something sweet, that we, pretty much, would rather hang out with our grand kids than anyone.  I like having tea parties, playing with play dough, building legos, doing puzzles, reading books and having sleepovers with them. I even do "Grandma Camp" in the summer.

 I can't get enough of them. When my kids were young, my mom couldn't get enough of them. Sometimes this annoyed me. I didn't get it then, but I do now. My mom invested in my kids lives. She believed in them and saw the best in them. My children have enjoyed a wonderful relationship with their grandparents. My parents spent time with my kids, they also attended dedications, sport games, concerts, plays, Grandparents Days, and lots of Graduations. They took the kids on vacation with them. They also "Kid-Sat" so I could go on trips with my husband. And they did this long distance as we live 4+ hours away. They also invested in their other grand kids, grand-nieces, nephews, church kids and missionary kids. My parents were both educators by profession, my dad in special education and my mom as a preschool diagnostic teacher. Investing in children has always been their passion and continued during their retirement years. My mom taught "Kids for Missions" at their church until age 81 when they moved away. Her grand kids and great grand kids have brought her great joy. My grand kids bring me great joy too. I am glad that I am like her in this way. It is a true blessing to have my kids and grand kids living nearby.

here's the gang minus one...

Four generations...

My Monday boys!

My Wednesday morning walking buddies!

Easter Lily

This post is written by my sister. I'm hoping this is the beginning of many guest posts.

We all have had pivotal moments in our lives when we have an awakening. Situations can be so obvious in some ways and other times life has to hit you in the face. Alzheimer's has a way of catching you off guard sometimes.

I have been very allergic to various flowers all my life, especially Easter lilies. Spring brings with it beautiful lilacs, flowering trees and bushes, and Easter lilies. I spend weeks sneezing and avoiding the fragrances of spring.

Several years ago I arrived home to find a huge beautiful Easter lily on my kitchen table with a card leaning up against it. I asked my husband where it came from with thoughts that I needed to get it out of my house as soon as possible. He shook his head with a little bit of regret and told me to open the card. My mind was searching for who would send me such a gift as ANYONE who has known me knows of my allergies.

 "Well it has to be some one who doesn't know me!" I opened the card and was confused when I saw it was from my mom and started to cry, realizing right away, like a slap, that all our fears about her were true.

 I went to thank her (they were living in our in-law apt at the time.) I thanked her for the beautiful lily and ended with "I don't know if I can keep it in the house." With a confused look, she asked "Why?" I answered with "because of my allergies."  Her flat response; "I never knew you had allergies." For years my mom had always bought me purple tulips at Easter (her favorite color.)

Over the years I have planted them and each spring I am reminded of the mother, my mother, that knew I was allergic to Easter lilies.