Purple

There seems to be purple everywhere these days... 

I bought a purple scarf today, because purple is my mother's favorite color. There was a time when she might have argued that it's lavender but to me its purple. She likes purple flowers, she has a favorite purple suit, she painted her bedroom purple. They have purple towels and purple rugs in the bathroom. You get the idea. I have never been fond of purple. The only thing I ever remember owning is a long plaid wool coat with a velvet purple collar. My mom liked that coat. 

It's kind of cool that the color that represents Alzheimer's disease is purple. Now that I can't communicate very well with mom with words, I try to communicate with her with color. I bring her favorite color to her, in blankets, clothes, in flowers, balloons, decorations on cupcakes etc. In the last few months, I have found myself buying items that are purple. At first, it was so I had something to wear on Alzheimer Awareness Day, but now I wear purple to my visits. It's a way to remember Mom's preferences and honor her. It's funny that I now like purple if only because my mom does. I am finding the color comforting.  I'm looking forward to wearing my purple scarf to my Christmas visit with my mom.

Christmas visit 2012

Holidays

The day after Thanksgiving 2011

Holidays are a wonderful time of year when we get to gather the family. I don't live close to family, so I really look forward to these special times.  My parents and my family have made too many trips to count spending time together at the holidays.  When Mom got to the point that she couldn't travel anymore, it was hard to not have them with us. So we started a new routine/tradition; siblings would celebrate separately and then gather the day after at my parents. This left my parents alone but together.  Last year my dad called and asked, "What are we doing for Thanksgiving?" He really wanted to spend it with us.  Since it was my year to work (duties of a nurse- Thanksgiving was going to be crazy) I said that we would come the day after. I knew he was disappointed to miss the big gathering. I felt like it was important for him to stay and be with Mom. We could have gotten him for several days to visit but it didn't feel right for Mom to be alone on a holiday. We did this at Christmas too, gathering the day after. There have been times throughout the year that we go and get Dad and bring him to our home for several days to a week. My concern was that if he left Mom for long, when he returned she wouldn't know him anymore. We know that this could happen at anytime. But so far, each time, she lights up when he returns. It seems she has no concept of time so we think she doesn't miss him when he's gone. She doesn't know what holidays are anymore. Each day runs into the next and is pretty much the same. 
This year Dad is celebrating Thanksgiving at my house. My sister and her family are coming. Ours kids and grandkids will be here. There will be crowds and chaos and Dad will love it.  
Mom will be alone for Thanksgiving and, although hard, we have let go of the need for Dad to stay with her on holidays . As a caregiver, Dad needs to have a break and live life and enjoy holidays sometimes just like they used to. So I'll drive up on Tuesday. I'll spend some time with Mom, get in a few hugs and bring Dad home with me. My sister will take him back on Sunday. It will be good to have him here.  We'll miss Mom but know she is well cared for and her smile will be waiting for Dad when he gets back. Here's to being thankful for all that God has given us!

Thanksgiving 2012, sending love to Kris in New Zealand

A job well done

This post was written by my sister

I am a fourth generation teacher. My great-grandmother was a teacher, my grandfather was a teacher, both of my parents were teachers. It is a rich educational heritage. Last Saturday evening my parents were honored and recognized for their career commitment to special education by the alumni association of their college. My dad taught for 38 years. My memories of his teaching career are mostly from the time he taught in the city of Hartford. He taught in a school that housed special needs students. He taught young men life skills and they taught him about survival in the city. My mom taught preschoolers. She had a reputation for working miracles with difficult children and their parents. I wonder how many children are successful today because she saw the potential in them when no one else could? She taught for over 20 years, giving structure, hope and love to the children in her classroom. She became a sought-after consultant by many in the field of early childhood education.

They touched the lives of so many families as they were involved with parent organizations, church activities, and mission trips all revolving around special education. They invested themselves professionally and personally in the lives of others: loving them, encouraging them and meeting physical needs.

My sister, my daughter and I  accompanied my dad to the banquet where Mom and Dad were honored, receiving recognition for their commitment to special education throughout their careers. My dad accepted the award on behalf of both of them to a standing ovation and some teary eyes. We wished my mom had been able to be a part of the evening. It was bittersweet, yet doesn't diminish the impact they have had on others.

Here's to you Mom and Dad! A job well done. Congratulations!

Guidelines for visiting the nursing home

Guidelines for visiting my mom... and/or visiting anyone in a Nursing Home

Visiting a nursing home can be both difficult and sad. When my mom was younger, she was really good at it. She knew what to say and what to do. Not everybody does. Visiting pushes many people out of their comfort zone. I'm hoping this list might relieve some anxiety:

1. Take the children; the residents love seeing children, as they are noticeably lacking in a nursing home setting. When we were kids, Mom often took us to visit nursing homes. It's a good thing she didn't let me sing, but my siblings did a fine job. So take the kids, but remove unruly or screaming children ASAP.
2. Animals. Check with the administration, but usually many kinds of pets are allowed to visit. Mom loves seeing dogs. We don't have a dog but there are residents in the independent area that visit regularly with theirs. If we see a dog making the rounds, we make sure Mom gets time to pet it and see it for a few minutes.
3. Smile.
4. Interact with others. You have no idea how long it may have been since someone said hello.
5. Bring flowers; family members should provide a vase that stays there.  We try to keep fresh flowers in Mom’s room.  Water plants or change water in the vase as needed. Throw away dead or wilted flowers, and rinse the vase.
6. Give your loved one a drink. Of course, you need to know about any restrictions on food or drink as some older people have restrictions and/or have trouble swallowing. When in doubt, ask first.  My mom is often thirsty but she can't/doesn't make her needs known. We have been told that she doesn't drink enough. Her labs confirm this. Instead of asking Mom if she wants a drink (she'll often say no or doesn't respond), I get her a drink with a straw and place it at her mouth. Since I have been doing this, the response is great. She'll smile, lick her lips and gesture for more. She takes in several small cups over the course of a visit.
7. After making sure the person is not on restrictions or a special diet, give them something to eat. The home where my mom is living has cookies or a snack for the residents in the afternoon but they have to come to the common area in order to get it. They use this practice to entice them out of their rooms. While well intentioned, this didn't work with my mother. They now have snack carts for family members to get snacks for their loved ones. While providing a snack for my mom, on this past visit I got a drink and snack for her roommate. It was the first time she talked and interacted with us.
8. Read something. The family should have some things available: a Bible, devotional book, a children's Bible story book, a favorite children’s book. Recently we left an old “Child's First Bible” in the room. The stories are about a minute long. My mom taught Sunday School, Children's Church and Kids for Missions until she was 81. She had a fantastic career as a diagnostic preschool teacher. One of her favorite books was Brown Bear, Brown Bear. Her great granddaughter read it to her on her last visit. We also have a photo album that is labeled with all her family's names.
9. Make them comfortable. Sometimes we find Mom’s room is too cold or too warm.  Let staff know if you change the temperature. Knowing a person's preferences is helpful. Share these with the staff. A simple thing like closing the blinds on a bright sunny day can be welcomed. Mom can't asked someone to do this and she can't do it herself so we have found her under her covers on a sunny day.
10. Make effort to interact with staff.
11. Visit in lounge or garden with children. Give them a change of scenery if possible.
12. Touch them. Hold their hand, hug them. Mom loves a good hug.
13. Don't feel like you need to stay too long.
14. Tell them you love them.

15. Try not to cry but if you do, it's OK.
16. Come again soon. 
17. Know that the families of every patient appreciate all you do.

Living with Alzheimer's vs Dying of Alzheimer's

There are many forms of dementia; not all are considered Alzheimer's Disease. Yet Alzheimer's manifests differently in different people. My father's sister has the disease, and we would describe her as living with Alzheimer's. She is stable, happy, compliant and is able, with dedicated, amazing caregivers, to continue to live alone independently. Her short term memory is almost non- existent, but in the moment she is there. She has a great sense of humor and is quite aware that she forgets. She likely won't remember our visits but, again, does very well in the moment. She can retrieve who we are and engage in spontaneous conversation. After a few minutes though, she will forget and repeat the question or statement. She has been in this mode for about eight years.

This summer we took Dad to Maine to see his sister. It was a gift from God, as it was the best visit that we had with her in about six years. She repeated herself only once. She is so pleasant and funny. She was able to start numerous sponstaneous conversations with her brother and her nieces. She asked appropriate questions about other family members. It was a wonderful day.

My mother's disease, however, progressed much more rapidly and she is now in a nursing home. Eight years ago she didn't have any symptoms at all.  We noticed the first symptoms about 5 1/2 years ago, and she has only had the official diagnosis for about three years. Now she only knows our dad. She speaks very little, no longer walks and now has to be put in a lift for transfers. She spends most of her time in bed. When describing our mom, it seems sadly that she is no longer living with Alzheimer's, but dying of it.

Dad with his sister

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.

Taking a break...

Sometimes, life doesn't let you take a break...but once in a while it does and it's such a gift! Breaks are good. I am on a break right now.  Time off from work, time off from regular life. Although I love caring for my grandkids, it's a break from that, too. I miss them a lot, Skyping has helped some.  My husband and I are on a ski vacation.  Today is a rainy day which actually makes a good day for knees to recover and to catch up with stuff. The weather has been outstanding and the snow awesome. The music festival has been a total treat as one of our favorites was here - Michael Franti.  It's been good to catch up on sleep, read, exercise and really relax. It's comforting to know my sister and brother are checking in on Mom and Dad and the girls are helping each other out with babysitting while I'm gone. It's wonderful to be with my best friend 24/7 doing what we love to do together - ski.

Confabulation

con·fab·u·la·tion (kn-fby-lshn) n. The unconscious filling of gaps in one's memory by fabrications that one accepts as facts.

It was five years ago when I first heard the word confabulation. I was sitting in a psychology lecture in nursing school. My instructor was explaining that confabulation happens when someone fills in the blank of a missing memory and believes it to be true. It is different than lying. I remember calling my sister and saying that we have a word for what mom does. It had been months, if not years, that my mother covered her memory issues. She covered very well for a very long time. My mom has a Masters degree in education, a smart women who could use logic to fill in her gaps. There were subtle things - things that didn't make sense or just mixed messages - the appearence  of lying.  My sister and I would compare stories and discover things that Mom said we did or said we said had not, in fact, happened. Her friends hadn't figured out that anything was wrong. Even mom's doctor didn't believe her memory issues were anything but age related. It was the discovery of confabulation that made us realize that something was really, really wrong with mom.

Bunny rabbits....

There was a time that my my mom was a repeater. She would repeat stories over and over.  And I mean over and over.  Once they moved to their current residence, (a progressive care/assisted living facility), an old story became a new "repeat". When I was 4, my mother dressed me up like a bunny and took me to this very same nursing home to visit the residents. She would go on and on about me hopping around. It was a sweet memory for her. A bit embarrassing for me to be the topic of her rambling story in which she would just interject in a normal conversation. My mother was losing the ability to have spontaneous conversation so she used her files of stories as conversation. Some fit but most were out of context of the conversation. Each story was told exactly the same. Some were true, some were made up with mixed information.

So there we were celebrating my parents 60th Anniversary, two days before Easter. My daughter and grandchildren had made the trip with me. So what did we do? We let them hop around the nursing home wearing bunny ears, bringing smiles to my mom and the other residents. Just like she did with me and my brother. A good investment of time. It was amazing how much old people enjoy seeing the children. Good memories. Who knows? Maybe it will be a story that I repeat. 

                                                              Four generations

Growing old together...

I hope to grow old with my husband, Paul. There are no guarantees. It's an amazing accomplishment when marriages last, 25, 30, 40, 50 and 60 years. My parents celebrate 60 years of marriage on April 6, 2012. They have had a good and loving marriage. Although Alzheimer's has taken so much from my mother, it has yet to take her love for my father. She lights up when he enters the room and pucker ups for a kiss. She likes to hold his hand. They have grown old together and it's good.  Happy 60th Anniversary Mom and Dad.

Swiss cheese

A friend of mine, whose mother had Alzheimer's disease, told me that Alzheimer's is like swiss cheese. She explained that sometimes or some days they are on the cheese and seem fine but then other times or days they are in the holes. As the disease progresses, they spend more and more time in the holes, and less time on the cheese. We found this illustration to be true. My mother's disease has progressed to the point that now, she spends most of her time in the holes.

Do we have a daughter named Lynda?

As the disease progressed, I knew the day would come when my mother wouldn't know me.  I didn't like testing her, so often, I would enter the room and say "hi mom, it's me, Lynda, I'm your daughter". She usually would smile and seem pleased to see me and make a comment like it's so nice to see you. She sometimes called me by name. When quized, she could sometimes figure it out. Many times she would refer to my sister and I as her sisters. It wasn't till later that we realized she had just lost the word daughter and was susbstituting the word daughter for sister.

Then one day, it happened.. I knelt next to her, and I said, (I remember it so clearly), " hi mom, it's me, Lynda, I am your daughter". She looked at my father and asked, "Do we have a daughter named Lynda?" He looked at me and said "yes, we do". Then my mom looked at me, smiled and said "ok". She was satisfied with his answer. I smiled and tried not to cry. All along and  even still, my mother has looked to my father for re-assurance and confirmation during her illness. He has been absolutely wonderful with her. She trusts him. The one thing you need when you have Alzheimer's is someone you can trust.  That was a very sad day for me. I cried most of the way home. I am so glad that even months later, mom still knows Dad.

Heritage, the good, the bad, the ugly....

I grew up in a home where my parents strived to obey God and love Jesus. I too, love Jesus and strive to obey God and attempted to pass that along to my kids and grandchildren. I have a wonderful heritage where my family passed on their love for God. That's been a good thing. My dad can trace family all the way back to the Mayflower. 

Not so good stuff, that we have passed along is over eating. My mom has struggled with her weight her whole adult life. Me too, always striving to get to that healthy weight. I'm not talking about that skinny , perfect weight but a healthy weight.  Poor eating habits were passed to my kids and grand kids :( This makes me so sad. I'm working to change that by example, of living a healthy lifestyle now.
Diseases seen in our family are  ovarian cancer, testicular cancer, hypertension, high cholesterol, diabetes and now Alzheimer's.  Alzheimer's is by far the most devastating.  It is a disease that kills the mind while allowing the body to remain alive. 

Fear

I have fear. Fear, that I will also get Alzheimer's . My sibling share this fear. I have two close friends whom mothers also have had Alzheimer's. They share this fear. My sister gave me the news that someone with a mother with Alzheimer's Disease is 40% more likely to get it. I haven't looked it up, I hope she is wrong. We've often joked that we could all be together in one home, but the sad thing is, we won't know each other. That, at least would make visiting easier, beacause visiting is hard. 

So what to do to be proactive and preventative ..... 
"They" say that learning something new later in life helps, so I'm hoping that nursing school qualifies for that. Exercising mind and body helps, so I have recently lost weight and try to exercise every day. I play words with friends with my sister in the morning and at night. We usually have 10+ games going. Healthy eating helps, so I have just completed a nutrition course. Treating  depression aggressively is supposed to help and any one with Alzheimer's probably is pretty depressed over it.  One friend just saw a study that says nicotine improves cognitive abilities, so we all might go out and get the patch and give it a try or not.... Being social helps, so we do enjoy being social!  Alzheimer's is not so much painful physically but it very painful emotionally. It affects relationships like no other disease.

My mom doesn't know me anymore...

My mother has Alzheimer's disease. It is a terrible disease. It's sad and heart breaking. Relationships are hurt. It was during the earlier stages when my mother was angry and difficult, that I first had this thought that I should write a book to myself on what I should do if I get Alzheimer's. I felt like there should be guidelines for living with this disease. I want to make it easier for my children if we have to deal with this disease again. There have been times that are pretty funny, and people would say " you could write a book"...now if I can just remember those stories...haha, I hope to write them down. Well, instead of a book, journal or whatever, I'm starting with a private blog. I don't know where to begin so I'm going to list some subjects and use it as a start
Confabulation
Denial
Driving or not
Anger
Confusion
Enjoy what you can
Living with Alzheimer's
Dying of Alzheimer's
List for me
Cruises
Poop and pee
Falls
Getting lost - sitting in a stranger's apt
missing
repeat, triggers.this is delicious, can I have the recipe?
unrealisic expectations, ie Florida, Colorado
Do we have a daughter named Lynda?
Holidays
Progressive care
Long term care
Diapers/Depends
Dentures missing/broken
Braless
Aides
Crying on the Merritt
Brown Bear
Lack of support from doctors and mom's friends
Losing words- daughter
Looking for me
Acceptance
Content and pleasant
Two thoughts, bed or bathroom
Sparkle, hugs like she loves me, I love you too
Missing mom
Caring for dad
Fear