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.