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Progression

As my sisters and I have stated previously, we so wish that we had better documented stages and events since Mom’s diagnosis.  This is our advice to you if you are dealing with this disease or something similar. Dad says he doesn’t want to document it– doesn’t want to remember.  

I found some old notes about Mom that give some indication of the progression of her PCA over the years.

July 2013 Mom was incontinent at a 4th of July party, which is the first incident I can remember.    She did not know she had done this, but just seemed annoyed that her pants were all wet. We had to borrow some clothes from a family member and Mom required assistance to change her pants and underwear.  

For a few summers, my boys and I would often pick Mom up and take her with us when we went to parks, the zoo, and swimming.   It kept her busy and gave Dad some time off. As time went on, it became more difficult.

Summer of 2014?

Me: “Do you want to watch a movie?”

Mom: “Do you have anything left?  I don’t think so.”

Me: “I do, let’s go see.”

Mom: “Bullshit!”  

 

She was becoming increasingly agitated.  She didn’t like to be away from Dad and the new situations we were putting her in at restaurants, parks, etc., were too stressful.  

 

Me: “Let’s go to the bathroom.”

Mom: “Why?  In this little one?  It’s little kids’ stuff. This is yours. These are your shorts. Creepy.”

 

This one is memorable– We visited the Magic House with my Aunt and some cousins.  We were having lunch on the outside patio and some chocolate milk spilled onto Mom’s shorts.  She was very angry and gave me a death stare. She said I was rude and asked how many times I was going to do this to her. Mom said she was leaving and tried to do so. My Aunt calmed her down with some Michael Buble songs.  It was quite a scene. We have become used to scenes over the years. We are pros.

Another:

Me: “Mom, let’s go to the bathroom.”

Mom: “I can’t pee in these little shorts you gave me. I don’t like them. They’re full of shit. They’re creepy.”

Mom then stormed out and said “I’m done.”

October 2017  

Mom cannot care for her daily needs.  She can sip from a straw if you hand her the cup.  She can hold some foods and bring them to her mouth.  She will often try to eat the tablecloth or utensil. She can walk but needs help to get in and out of a seated position.  She mostly shuffles. Her feet often look purple and are swollen.

November 2017

Dad and I decided that he would no longer be picking my boys up from school.  He had been picking them up two days per week. It was just getting too difficult to get mom in the car.  She was really just dragging her feet and unable to walk.

December 2017

Mom can’t walk anymore.  Her feet just drag or she goes up on tiptoe when dad lifts her out the wheelchair to change her depends.   She is sleeping a lot more.

Lately, Mom has developed a couple of pressure sores— one on her inner calf and one on her outer thigh/hip.  They seemed to appear overnight and formed large pus filled blisters. The first seemed more alarming and we ended up taking Mom to the ER a few days after Christmas.  It was very difficult to get her out of the house since it’s all just Dad lifting her into the wheelchair and into the car. Of course it was very cold and miserable outside.  My Dad’s sister and her husband cancelled their dinner plans and helped us get to the hospital. They sat with us the entire time. We are so fortunate to have them on this team!  That’s a tip for you– get a team. Luckily, the wound was not infected and home health care has been coming out to monitor and to treat the wounds. The doctor said that these wounds can form easily if the skin breaks down where the bone presses on an object for too long.  In the first case, Mom had been crossing her calves while sitting with her feet elevated and the friction from slightly shaking her legs caused the sore. Something for caregivers to be aware of. We are learning as we go…

March 2018

Right now I’m sitting at Dad’s while he is out at the store.  Mom is watching I Love Lucy and alternates between laughing maniacally, yelling at the TV in annoyance, and grimacing as if she’s in pain.  What’s going on in there?

 

From here on out, I’m going to try to post about changes in Mom’s condition as they happen.  

 

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Tips for the Beginning Stages – Clean out the Closet!

By:  Betsey

We often feel like we are wading through each stage of Alzheimer’s blind with no clue as to what we are doing! Just as we feel that we are getting a handle on something, my mom’s condition will change rapidly and we scramble to come up with a solution to each new change and challenge it presents.

Perhaps we should have utilized more resources and there is a magical guide we could have read, but we have just been figuring out each stage on our own by trial and error.  Each situation is unique, but part of why we write is to help others by sharing what we have learned along the way.

One thing that helped us very early on was to organize and clean out my mom’s closet.

My mom loved to shop! She is very fashionable and had many, many clothes. It took us a while in the beginning to realize it was overwhelming for her to pick out clothes each day. With posterior cortical atrophy, it was difficult for my mom to see things that were in front of her. Crowded spaces were difficult and overwhelming for her to process.  Therefore, looking in her packed closet and getting dressed in the beginning stages became very difficult.  She struggled putting together clothes that matched or the appropriate clothes for the season. I don’t know why it took us so long to realize something so simple – clear out the closet!

We moved all of her clothes to a different closet and even bought a pop up portable closet  for more space to store additional clothes in another room.  We only put the clothes back in that were of the correct season and size and eliminated clothes with a lot of buttons or that were uncomfortable, etc…. While we did donate some clothes, just a tip – don’t get rid of all clothes of varied sizes. Our mom’s weight has fluxuated up and down during this journey. At first, she gained some weight because she wasn’t cooking for herself as much. There was more eating out, more people dropping by with food, etc… Since that time, my mom has had varied times of weight gain and loss so I am glad we didn’t get rid of everything.

So, in the beginning we essentially cleared out my mom’s closet to a few shirts and a few easy to wear pants that she would go for most often. This made a huge difference.  Also, as we knew big events were approaching – wedding showers, parties, Christmas etc… we would plan her outfits in advance and lay them out for her. This helped my dad as well.

Cleaning out the closet is something we could all probably stand to do! But, for us this early on clean out made a big difference!

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The Early Stages

By Betsey

Alzheimer’s Disease impacts people in different ways.  Life-spans can vary and the stages and symptoms of this disease can affect people in sometimes unexpected ways.  It is surprising to most people that loss of memory of her loved ones only came fairly recently for my mom.  I would say it was only about two years ago – so 7 years after diagnosis, that my mom stopped being able to recognize most people.

In the beginning, we were all very concerned about the timeline.  What were we looking at?  What should we expect?  How fast would this progress?  If you read the statistics for early on-set Alzheimer’s Disease, it was expected that my mom would live 3 to 5 years.  However, our doctor was reluctant to give us a timeline and I am glad now that he didn’t as we would have blown that out of the water!  It has been 9 years since the diagnosis and my mom has been relatively healthy.

Our mom was diagnosed with posterior cortical atrophy, which is consistent with damage to the area of the brain responsible for processing visual information.  Typical with this form of Alzheimer’s disease, early on she demonstrated confusion with math, directions, and handwriting.  She wouldn’t see things that were right in front of her (much like my husband, and probably every husband in America….)  At first, should couldn’t figure out money or math but her memory was very much intact, so for that we were lucky.

In the beginning our mom seemed relatively like herself.  My dad still worked full-time and was gone during the day and Mom stayed home alone.  She stopped driving right away but would still usually cook simple dinners and clean the house.  I remember she seemed a little lost and she was often lonely during the day.  During this time, she still seemed like herself in many ways but she also seemed like a softer version of herself.  She laughed more and seemed more gentle.  I distinctly remember being in the car with her and we were driving across the state.  My mom reached over from the passenger seat and touched my hair and told me that I was pretty.  My mom was never uncomplimentary of me, but there was something so unexpected and tender in the way she made this statement.  It caught me off guard and it is hard to explain, but in a way, that is the day she goodbye to me and that is how she did it.  In that one gesture and compliment, she said so much more.  It’s the last real moment I remember where my mom was there present with me as a mother to me.  It was a send-off, a transition, an apology, and a goodbye all wrapped up in a compliment.  Although she has been very much present since that time and has known who I am until recently, to me that was the last moment that she looked at me as a mother looks at their daughter.

After that, she moved into more of a child-like state.  She was emotional and non-sensical at times and you had to do a lot of prodding to get her to comply or follow you.  During these years, in our effort to Run for the Sun, we took our mom to see a taping of the Ellen show.  Early on, when she was home alone while my dad continued to work, she would watch Ellen and laugh and dance around.  We were lucky to get tickets to a taping and us girls flew with my mom to Los Angeles and got to see Ellen! That was the last time my mom flew and it was starting to get difficult to travel with her, but we made it just in the nick of time for an amazing trip.

I remember during these first few years we would hang out with her and take her with us shopping and to run errands much like we used to before the diagnosis.  She enjoyed getting out and about but would follow us around a little like a child. She sometimes would call out things trying to make sense of them.  I distinctly remember going to Old Navy with her and my young son while pregnant with my daughter.  My son was going in and out of the clothes hiding and my mom was following me around with a pair of men’s pants in her hands asking me loudly – whose pants are these? I was chasing my son whilst waddling around and trying to also keep my mom with us, making sure no one got lost or bought men’s pants.  I remember shaking off the concerned look from strangers and my mom and I both laughing at ourselves. She still was aware enough at the time to know we were a sight to be seen.  Sometimes things were/are just so desperate, you had to laugh.

During this time, we would take my mom to wedding showers and parties and dinners out.  We didn’t want her to feel left out and wanted to enjoy these life events with her. This happened for the first few years.  However, one day, about five years after the diagnosis, we noticed her tearing up and becoming agitated in these settings.  It was overwhelming for her and the tide turned from being kind to her and wanting to include her, to putting too much on her and putting her in an uncomfortable situation.  We still got her to go to the zoo with us and  to the occasional sporting event for the kids, but it slowed down considerably at this mid-stage of Alzheimer’s.  It was overwhelming and overstimulating for her to be in crowds and after that, she began staying at home much more.

In the beginning years, things were difficult and changed rapidly but we had a relatively smooth transition into Alzheimer’s.  As we discussed before, we wish that we had kept more detailed notes of what was happening during each phase so we could look back on the timeline to reflect on the changes that occurred.  If you or a loved one is in the early stages of this disease, I recommend keeping a timeline of changes and significant events and I also recommend planning a trip with your loved one in the early days!

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Alzheimer’s Assocation Care Consultation

I recently found a folder of information that I collected from the Alzheimer’s Association and other agencies soon after Mom was diagnosed.  This included lists of support groups for family members and adult day services as well as tips and suggestions on selecting services.  Most interesting was the Action Plan formulated during a Care Consultation with an Early Stage Coordinator at the Alzheimer’s Association that my sister mentioned in an earlier post.  It was dated February 22, 2009.  The Action Steps are below:

  1. M will discontinue baby sitting on her own.  The family is encouraged to find ways that M can continue to provide care for H in a setting in which she is not alone with him.
  2. Due to safety concerns, the stove should be unplugged when M is home alone.
  3. Foods that are left for M to eat for lunch or dinner should be put on a separate shelf in the refrigerator or on a shelf with very few other items.  One can expect that the PCA will make it difficult or impossible for M to find meals that are seemingly right in front of her.  Meals on Wheels may be an option, but an adult day program would probably be best.
  4. B will look into options for dinners, such as Time for Dinner.
  5. The family will explore Adult Day program options.   A list was provided.
  6. M will be enrolled in the Let’s Talk program, the Alzheimer’s Association’s telephone-based peer support program for people with memory loss.
  7. The family will be given priority in being admitted to Project Esteem, the Alzheimer’s Association’s education/support program for people with early stage dementia and their family members.
  8. M will be enrolled in the Medic Alert Safe Return program.  T is encouraged to wear the caregiver bracelet/necklace.  An application was provided.
  9. The family and/or M will discuss depression with her physician.  Depression is very common in people who have PCA, and M is exhibiting some signs of depression.
  10. M will be enrolled in Lifeline.  An informational brochure was provided.
  11. M’s daughters will assist with de-cluttering the home.  This may be best accomplished when M is out of the home.
  12. The family will look into purchasing a telephone that will allow M to call people by pushing a button with a photo of the person she wants to call.  These phones are available through medical supply stores and online.
  13. The family will work together to develop a schedule of people who can assist/spend time with M.  It would be helpful to have a list of ways people can help.  Other family members, neighbors, friends and colleagues should be enlisted to do whatever they feel they can.
  14. Having a young family member with PCA can be very difficult to deal with emotionally.  M’s husband and daughters are encouraged to attend a support group and/or utilize individual counseling.  Lists were provided.

Your family was a pleasure to work with.  You are dealing with a very difficult situation, but you have strengths that other families don’t have.  The above list is longer than most action plans that families get from a Care Consultation.  Please don’t let it overwhelm you.  Items 6 & 7 depend on actions to be taken by staff at the Alzheimer’s Association, and you should expect to hear from us soon.  Outside of those two, I would advise that the safety issues be addressed first (items 1, 2, and 8) and that nutrition should be second.  After that, just gradually work on the action plan as you are able, one or two items at a time.

 

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In the Face of Alzheimer’s

By: Betsey

What is the face of Alzheimer’s? Like most people, if you would have asked me this question before my mom’s diagnosis, I would have described a kindly old woman with gray hair sitting in a nursing home with a lap blanket. Maybe I got this image from the movie, The Notebook? Maybe this is the true face of Alzheimer’s and reality for many people? But for us, the face of Alzheimer’s is a very different picture.

The face of Alzheimer’s is the face of our very youthful and beautiful mother. It’s the face of my dad, which is now more weathered after nearly 10 years of caregiving. It is my face, worried that one day I will also be diagnosed, and it is that of many strangers who are walking around with this disease or worried about a loved one with Alzheimer’s.

Unlike the picture of the woman with the lap blanket, our mom was 59 when diagnosed. She didn’t (and still doesn’t) have a gray hair on her head.  She is beautiful and fashionable and she didn’t show physical signs of illness in the early years.

I remember going out with her and my sisters for dinner early on. We would discuss with her what she might want from the menu and then order for her as she could not communicate her order to the waitress.  I can clearly recall one waitress in particular making a snide comment and glaring at us as though we were being controlling and rude to our mom somehow.  Also, when we would be out in public and she would become angry or call out nonsensical statements, people would stare, laugh, or shoot us annoyed looks.  Because she was so healthy looking and young, people didn’t understand. No one would look at us with sympathy or concern as they would if she had more demonstrable signs of illness. This journey has definitely made us all more sensitive to mental illness.  You really never know what people are carrying around with them just by looking.  Not all illness looks the same.

Unfortunately, Alzheimer’s disease is becoming an issue that more and more people are facing at an earlier age. According to the Alzheimer’s Association, more than 5.5 million Americans are living with Alzheimer’s disease, and by the year 2050 this number could reach 16 million. Almost two-thirds of Americans with Alzheimer’s are women. See https://www.alz.org/facts/

Although the face of Alzheimer’s is becoming ever more present, there is currently no cure for this disease. That is part of why we write – to help bring awareness and in our own way change the idea of Alzheimer’s, mental illness, and other silent diseases. Thank you for joining us as we shed light on all the different faces of Alzheimer’s disease.

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After the Diagnosis: What to Do First

By:  Betsey

What do you do when a parent or loved one is first diagnosed with Alzheimer’s Disease?  For us, it was an overwhelming and scary time. We didn’t know where to turn or what to expect.

Below are our best tips for the time right after the diagnosis.

1.  It’s Okay to Grieve

It is okay to feel shocked and overwhelmed after the diagnosis. I remember when I heard the news, I couldn’t help it, I kept googling my mom’s specific type of Alzheimer’s Disease.  With any illness, people warn:  Do Not Google, but I couldn’t stop! There was no good news. Nothing I saw made me feel better but I wanted to try to understand what was happening.   It’s scary because you have no idea how much time you have but you do know that there is no recovery.  It is okay to grieve and take time to get used to the news in your own time.

2.  Forgive Yourself

As I detailed before, for a long time I felt very guilty. I had noticed the changes in my mom but didn’t consider Alzheimer’s.  I teased my mom for forgetting things. I felt like a jerk. It took me awhile, but eventually you have to forgive yourself and focus on the road ahead.

3.  Find a Good Doctor

Find a neurologist that you are comfortable with.  Get recommendations from your family doctor and do your research. It is okay to visit a few doctors to see who the family is comfortable with.  Lately, when my mom has a neurologist appointment the entire family goes.   It is nice to develop a relationship with the doctor and all of their staff as you will be spending a lot of time together.

4. Get Involved with the Alzheimer’s Association

The Alzheimer’s Association is wonderful and provides many resources. They have support groups, a helpful website, and a surplus of reading material. In the beginning my Mom signed up for the program where she was matched another person who had also recently been diagnosed with early on-set Alzheimer’s Disease. Through the Alzheimer’s Association, they would call each other at specified times to talk about what was going on in their lives and I think she enjoyed this program. Also, at various times, all of us participated in different support groups.

The most beneficial thing we did early on was set up a care consultation. Through this program a trained consultant from the Alzheimer’s Association met with our family to answer questions and provide resources. Looking back, I will always remember this time as the moment I realized how brave my mom was. She was still very much aware of what was happening at this point. She sat there  at this meeting as the care consultant discussed the changes she and we all would be facing. The care consultant advised that my mom stop babysitting my nephew immediately. It was devastating news to her. She loved babysitting my nephew but she never would have done anything to put him in jeopardy.  She didn’t argue or push back but I was horrified at how awful this must have been for her, sitting there, taking it all in.   I will never forget that meeting and thinking the whole time how  I never knew how brave my mom was and wondering what else I didn’t know about her.

5.  Make an Appointment with an Attorney

Find an attorney that specializes in elder care and estate planning and make an appointment right away. It may be hard to imagine right after the diagnosis, but a day will be coming soon where your loved one won’t be able to make their signature and will not have the cognitive function to make necessary decisions. It is important to get key documentation and other long-term plans in order now.

6.  Start Documenting

From day one, start documenting the changes that occur with your loved one and when they happened. Keep a timeline of key events and mile markers as later on you will want to reflect back on this time and see when certain changes occurred. My sisters and I discuss this all the time and we wish we had kept a better timeline following the diagnosis. We have tried to go back and piece together key periods and changes, but it is difficult, so start right away.

7.  Reconsider Driving

At first, we thought Mom was totally fine to drive. She seemed like herself. She maybe couldn’t do extensive math problems but surely she could drive up the street to Walmart? We fully intended to let her drive around to her normal spots initially and now that sounds totally crazy. Luckily, at a doctor’s suggestion, we did a driving simulator test early on. My mom’s reflexes were slow and her nighttime driving was very poor. The day my mom completed the driving simulation test was the day my mom stopped driving. That was a difficult time as my mom was very much aware of what was happening to her and she was sad to lose her independence, but it was definitely the right decision.

8.  Run for the Sun

Reconsider your loved one’s bucket list immediately. Has she always wanted to go to Paris? See the Grand Canyon? Make it happen immediately. Plan a trip, plan a family reunion, plan a celebration, and do it now. A few months after the diagnosis, we surprised my parents with a trip to Italy.  My mom is a proud Italian and had always wanted to visit.   Like many people, my parents had saved such a trip for retirement.  However, their plans accelerated quickly. When they went to Italy it was early enough that my mom was physically healthy and was able to enjoy the trip to the fullest extent. So, early on, go for it. Make a plan to cross items of your loved one’s bucket list and revise your own bucket list while you’re at it!

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Looking back

Welcome!  I hope that this blog will help those at any point in their journey with Alzheimer’s to know that there are others going through the same thing.   My Dad takes care of my Mom full time and has since he retired in 2012.  My sisters and I are using this blog to document what has and what will happen and to be a resource for others.

In the beginning, there were small signs that Mom was sick.  When you look back it is easy to string them all together.  How she quit Pottery Barn because she was so intimidated and flustered by the register.  How she got up the courage to make flyers about a home staging/decorating business.   I helped her to distribute them around a few neighborhoods near her.  Her first customer called and she went to help them!  It was exciting for her.  Later that day, Mom was distraught because she had overcharged them.  She went and gave them back their money, but I know she was embarrassed.  In 2009 we had a garage sale.  Mom always took care of the money box.  This time she didn’t seem as interested.   A woman bought something for one dollar with a twenty.  Mom could not make the change.   Another instance—she had a doctor’s appointment but came home without making it there because she got lost.  She was crying and very upset.  She could not problem solve to call the doctor or one of us to get help with directions.  Mom was diagnosed with Posterior Cortical Atrophy in May of 2009.

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In the Beginning and In the End

By: Betsey

In the Beginning

She was 59, I was 29. Alzheimer’s. The word blew me away. She was so young. She didn’t even have gray hair. I knew nothing about Alzheimer’s disease, but I thought the disease happened to people much older than my mom.

I remember the first emotion I felt was shock. I kept hoping it was a mistake.  Maybe they misdiagnosed her and we could get medicine or a surgery early and beat whatever it was?  But the truth was, it was in fact Alzheimer’s disease and it came for my mom early.

After the initial disbelief, a strong sense of guilt set in. The year before the diagnosis, I was living at home. I was preparing to get married and was living with my parents while I was starting a new job. I spent a lot of time with my mom during this period and I noticed small changes. I teased her for forgetting things. I got frustrated with her when she did something strange or forgot simple things. I had noticed her confusion while balancing the checkbook and the fact that she started to quit activities that she previously enjoyed. She seemed angry and defensive. She wasn’t comfortable driving beyond a certain point from home. I noticed all of these things, but I hadn’t even considered Alzheimer’s. I hadn’t thought that she needed help.

Guilt is the emotion that dominated initially. Forgiving myself took a long time and sometimes I still feel a sense of remorse when I look back on that time. I should have done more. I should have been more compassionate. But at some point, you have no choice but to forgive yourself, because to go on this journey, your loved one needs everything you have going forward. You have to be strong and ready to go on this ride with them.  I had to put my guilt and fear aside and accept this previously unknown disease as a part of my mom’s life and as a part of my life.

In the End

As we start this blog to tell our story and to open our lives to others on this journey, we are 9 years past the diagnosis. We are in the end stages of Alzheimer’s disease. My mom continues to battle courageously and we all continue to do our best  to adapt along with this rapidly changing disease.

Since the diagnosis, my sisters and I have changed careers, married, had babies, and learned more about caregiving and illness than we planned. We have watched the subtle changes and weathered the dramatic. We have watched our mom forget basic skills and ultimately forget our names. But, every day we continue to live our lives while trying to honor and respect hers.

Although I know we are here near the end, what we dreaded from the day the word Alzheimer’s entered our world,  in some ways the beginning still feels like yesterday. Sometimes I can still feel the  initial guilt and sense of disbelief.   Looking back, I’m glad I didn’t know all of the things that would happen on this journey. Maybe we all wouldn’t have been as brave.

If you are just learning of an Alzheimer’s disease diagnosis in your life and even if right now you aren’t feeling brave enough to handle this  journey,  let a little courage in at the beginning and it will grow along with you along the way.

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In the Beginning

By: Melinda

It has been nine years since Mom was first diagnosed with post cortical atrophy. I was living in Hawaii, watching the sunsets, playing in the ocean tides and lounging on the soft sand beaches. I was single and really didn’t have a major care in the world. Up until that point I had made decisions based on what was best for my life and any goal or dream I set out to achieve, I just did it. I wanted to be a photojournalist, so after college I packed up and moved to Colorado where I did just that.  I had a free ski pass, met a lot of celebrities and enjoyed mountain life. After years of being cold, I decided I needed to move to the beach, so I moved to Hawaii. Three years into Hawaiian life, my world changed.

When I got the call in 2009 walking along the beach, it changed my life. Dad called saying that Mom had emphysema (yeah, I said emphysema, random, I know). One doctor thought that was what was wrong with her. Mom had never been a smoker through my whole life and I had never heard of her being a smoker before I was born. I’m fuzzy on the details but the doctor quickly changed her mind and a neurologist diagnosed her with post cortical atrophy. Which what research says leads to Alzheimer’s.

I was now faced with making a decision for myself but also the best interest of my family. I didn’t want to have any regrets and perhaps if there was only a few good years left of Mom being Mom, the best decision for myself, my mom and my family, was to make the move to Missouri to start on this heart wrenching journey of supporting her through this disease.

It was a hard and huge decision for me, since Mom and I were never in my mind “close”  and it probably took me longer than it should have, but I decided to make the move. In that decisive moment, the hope of grabbing onto any last minute moments and memories with Mom and perhaps feeling closer to her, as well as being there for my family, was the motivation. It has been an emotional and ever changing 9 year journey this far.

I hope that our experiences of going through Alzheimer’s with  our mom will help you through the small and major decisions that come with this disease, but also most importantly remind you that you are not alone on this journey. We are here for you.