I haven't been able to write about my mom for quite a while, but I thought it was time for a little update for those who have been so kind as to inquire about her.
We now refer to our days as being "sunny or cloudy".
Throughout the day it changes frequently.
We can have sunny moments where her eyes are bright and her thoughts are relatively clear, then the clouds will come....
We've cared for her for nearly a year now and one thing has become crystal clear.
She loves being around her family.
Especially the little ones. They are her purpose. They are her 'why'.
There's no doubt about that. Everyone sees it.
My mom got to be around her great-grand babies at a family anniversary party this past weekend.
(Happy 25th Dave & Kim!)
Her family is her heart, and the more she's around little ones, the more sunshine than clouds we see. Her face glows, her eyes clear and her spirit becomes alive with joy.
Even later that night she was still so awake and aware. She was still excited, still happy and still animated and conversational.
She wanted to polka at 10:30 pm
...and so we did.
Then this week...
She bathed herself. (I just supervised)
She buttoned her own buttons..and got each of them in the right hole.
(That hasn't happened since....we can't remember)
She said things like "I appreciate you" and "Thanks for everything you do for us." She used sentence structures and came up with words that made us raise our eyebrows, tilt our heads and nod in wonder.
But there was one thing this week that I was especially grateful for...
She asked about her mother and she didn't end up in tears.
Frequently, almost daily, my mother would ask me "Where's my mom?"
We had come to dread those conversations.
We would tell her that her mom doesn't live here anymore and either we'd tell her that she had passed away as gently as we could or we'd tried to spare her that news and try to get her onto another subject.
But, sometimes, when she focuses on something, it's hard to make that transition...she always been a tiny bit stubborn. :-)
I can't even tell you how horrible it makes us feel to see her have to deal with so much sadness and grief. She loved her mother so much.
You see, she was actually my grandmother's caregiver for the last few years of her life...and my grandmother (who we called Busia, that's Polish for grandma) passed peacefully in my parent's home with my mom by her side.
These 'mom' conversations had increased in frequency lately.
And they always ended the same way...in tears and grief. As if she was a child who lost her mother.
But this week, this week was different.
I went out for a walk with my mom and dad and they stopped to sit on the bench near the tall oak tree. Out of the blue, she mentioned a dear neighbor friend of hers who had passed away many years ago...which was surprising in itself. But then, she added "My mom's not here either, is she?" It was more of a statement, than a question.
When my dad and I told her, "No, she isn't, but she still lives in your heart", my mom was okay with that. She actually looked up at me and smiled.
Let me tell you, that was a moment I won't soon forget.
We have learned to treasure those 'sunny' moments,
and we hope to have the little ones around her more often to spark her spirit.
That brings to mind a song my mom used to sing to us when we were her little ones.
It seems so appropriate these days.
"You are my sunshine, my only sunshine.
You make me happy, when skies are gray.
You'll never know dear, how much I love you,
Please don't take my sunshine away."
Wishing you many more sunny days, Mom.
~Anne
I had intended to post weekly updates as we battle my mom's dementia/Alzheimer's,
but this disease had other plans for me.
I thought once we had implemented specific lifestyle improvements
and therapies we'd gain ground and we could press forward to the next goal.
I've come to discover that 'progress' is not so easily defined.
Some days you take one giant leap forward--and feel really good about what had been accomplished-- only to find on the following day that this damn disease had changed the rules overnight.
I previously thought that progress would be made in the form of a 'dance'.
Some days I'd lead, other days the disease would...but that's not how it really is.
Dementia doesn't dance.
It fights and fights dirty.
This particular fight takes place in a labyrinth, not a battlefield, so it takes a long time to recognize if true progress has actually been made.
I'll just give you a few examples of where we began and where we are today.
When we first became her caregivers, my mom had lost most of her communications skills. When she wasn't sleeping, which was a good 15-18 hours a day, she would stare out the window, lost in her new world and rarely engaged in conversation.
It was so hard for her to find the right words and she was starting to lose the power to convey her thoughts or speak a complete sentence. She could parrot what you would prompt her to say, but left to her own thoughts, she could only manage to string a couple of words together and then that thought would fade into a mumble and a whisper.
(I need to mention that she still had 'bright moments'. There were times when my mom's sense of humor managed to poke its way through the darkness. She occasionally 'got' jokes and even caught playful sarcasm. THAT was a part of my mom's core being this disease couldn't control, and we were very grateful for that!)
My mom would become overwhelmed if the room was filled with noise---
too many voices, too many people. This would cause her to either become fearful and cry or shut down and become withdrawn.
If you wanted her to do something, 'sit here', 'drink this', etc., all other sounds in the room needed to be silenced so she could focus on what you were saying.
And even then, you might not get through. We learned that we needed to use as few words as possible to communicate effectively with her....and to speak slowly.
She couldn't write her signature or play a simple memory game where she would need to remember 2-3 matching pictures. She couldn't identify common items in the conversation cards we used to stir her memory (bird, horse, flowers, coffee cup, etc.) She would need to read the words below the picture and then it would make sense to her. (Yes, she could still read. Weird, right?)
She no longer helped with any daily activities around the house. She couldn't dress herself. Even as you helped her get dressed, she didn't remember that her arm went into the sleeve of a shirt and you'd have to guide it in for her.
She would resist taking showers. She'd get mad, cross her arms and mumble she was tired of taking showers and she'd taken too many in her lifetime...or something to that effect.
She would often become sad, then combative and would want to leave--sometimes in her pajamas, in the middle of the night, in the cold and snow-- to go 'home'. This would happen several times a week.
She called for her mother. She would ask where she was. She wanted to see her and became so very sad when someone gently told her she had died.
In fact, learning about the passing of anyone she had ever cared for, even if they had died decades ago, was like she heard it for the first time....and she would grieve the loss all over again. That was brutal.
The majority of our days were 'lost and sad' days and it was very difficult to keep her happy during her waking hours.
There are so many other little quirky things that were part of who she was last October, but hopefully you get the picture.
Now we look at where she is today (without any drug intervention.)
I'm happy to say that now we have many more 'good' days than bad. She hasn't tried to leave the house or cried for her mom in quite some time, although she still talks about her and is sad she's not here. But now she seems to understand that it wouldn't be possible for her mom to still be alive. She no longer dives deeper into that sadness or depression. We encourage her to 'count the blessings' among her family, children, grandchildren and great-grandchildren, and that really helps her.
My mom wakes up with a smile. Every day. All I have to do is go into her bedroom and say "Good Morning Sunshine!" in a 'sing-song voice and she sits up, smiles and says good morning back. Usually she wants a hug and a kiss. Of course, she gets both.
Sometimes if she's still a little groggy, I know she'll need a nap after breakfast, and other times I can tell right off it will be a stellar day.
She now is able to focus on the person talking in the room.
She'll make comments which are appropriate for the conversation at hand. She'll even start a conversation, usually with something sweet, such as "Oh, look at those beautiful flowers" or "Dinner is very good".
When I give her a bath (we've discovered she prefers baths over showers) she says how good the water feels and will usually wash herself. She still needs help washing her hair, but most days she can get dressed with just a little assistance.
We've had to learn to let her 'try' to do things she couldn't do in the past.
It had become such a habit for us to do everything for her.
But when we started to see the light coming back in her eyes, we had to remember to step back and let her try to do things on her own. Things like brushing her own teeth, combing her own hair, dressing herself. She still needs help picking out the appropriate clothes, but some days (not all, but some) she's able to get her pants on without help. Same goes for her socks and shoes. That's progress.
She knows what is going on around her. We've had to learn not to talk around her but to her. She's picking up on so many more things in the conversation as she is able to stay focused for longer periods of time.
She will always express gratitude for what we are doing for her. I've never been told how wonderful or good I am and I've been kissed more than I've been kissed by my mom for the past 8 months. Nearly every day, she tells Doug (my husband) how wonderful he is and thanks him for everything he does for her and my dad. She knows my dad and still wants to be near him and dance with him. She tells him how much she loves him and usually remembers his name.
She can now function without sadness when we have company.
Lots of people in a room no longer overwhelms her.
We had family come to visit yesterday and afterward, without prompting, she started to help clean up some of the glassware and took it in the kitchen.
Those of us around her looked at each other, and without a word, acknowledge this 'new' behavior with raised eyebrows and a smile.
We now find on occasion, she'll want to pitch in to help clean, or ask if she can help with dinner--- and that didn't happen 8 months ago-- but it's so like my mom to want to help.
Schedules and predictability are her friends. Preparing her for events or company also is helpful. We're learning what works and what doesn't.
Asking her to do something for you is a great way to get it done. No one likes to be told what to do and my mom is no different. But her joy in life has always been to make others happy so she's most likely to comply when she thinks it will make you happy.
She's the sweetest person I know. Her 'essence' is still there and we're seeing a
little bit more of her shine through the darkness.
More laughter, more happiness, more....mom.
I have to let you know, we still have our 'bad' days. But now those are now defined differently. A bad day today means she's less 'awake' during the day and sleeping more. Or she's not so clear with her thoughts or sentences. Or not as happy as usual. There are also degrees of good and bad days. And on those bad days, we've found that it is usually a cause and effect situation.
A truly bad day will be the direct result of something that happened the night before, e.g. staying up too late to watch a sporting event with my dad.
Her memory has not rebounded as strongly as we had hoped, but her ability to complete tasks, her communication skills and mood have improved. Not every day, but some days. So I guess that's something, isn't it?
Since we have had positive results, I'll also be sharing what we have found to be helpful as we navigate through this labyrinth. If you'd like to get updates, be sure to follow my blog or look for my posts on Facebook.
I'll try to be more timely with my next post. I really think what we have learned may be valuable to others in the midst of this same situation and I'm willing to share, so please feel free to forward this to anyone you think may benefit from this info. :-)
We're all in this together.
Be well, my friends.
~Anne
At first we started noticing my mom was forgetting words
and was really having a hard time with names. More so than 'normal'.
Then she forgot how to play her favorite card game.
As the days and months went on,
we noticed she was slipping further and further away
into the grip of what we now know is severe dementia.
Or it may be it Alzheimer's.
It doesn't really matter what you call it, the results are the same and they are devastating.
My dad was losing his love of 60+ years.
We were losing our beloved mom and our children
were losing their wonderful grandmother,
Rose: The heart of our family.
What made this even harder is that at the age of 83, she is extremely healthy otherwise. She is on no medications.
She has perfect balance, she would take the stairs two at a time
and she is able to bend and touch her toes.
She was fiercely competitive when playing ping pong, croquet and basketball. Her grand kids remember coming out of the losing end of those games all too often. And she she challenged you to a game of ping pong, she had a wicked kill shot and would use it at will.
But my mom had reached the point
where she couldn't shower or dress herself anymore.
She didn't remember how to brush her teeth. Or turn on a light switch. She had forgotten how to do the simplest things that she had done for years.
She didn't care about keeping the house tidy and clean--something in which she took such pride.... before.
She could barely find the words to utter a complete sentence
and most times would simply give up and stare into space,
her mind caught in a web of thoughts that couldn't find their way to her voice without getting all tangled.
She stopped engaging in conversation --and yet sadly she was aware enough of what what happening to her to become frustrated with herself. She would get angry. Several times she would get so worked up that she would say she wanted to end her life.
That's a difficult thing to hear your mother say.
We all struggled to accept what was happening to her, grieving
for the loss of her essence and tried somehow to establish another,
much different, relationship with her.
We would console each other by saying how this might be a kinder way to lose someone you love so deeply. One little piece at a time, until they were so far gone that you barely recognized them anymore and it would be a blessing to them (and us) when the suffering ended.
Now I realize were all going through a grieving process.
Denial, anger, bargaining, depression....we had just reached the point of acceptance.
But through it all there was still a tiny bit of hope.
I started to dig deep in the research surrounding brain health, dementia and Alzheimer's. To find some clue, some reason for this disease to take hold in my mom, and more importantly what could be done about it. Was there some trigger? Was there some nutrient or lifestyle change that could help?
If I could get down to the root cause, then maybe there could be something that we could do for her.
The more I learned, the more empowered I became. After all, this is what I do. I help people become healthier. I search for the answer to help their bodies rebuild health. It's a little easier when you are talking about losing weight or eliminating allergies. Those things are fairly easy when you have the proper tools. The brain is a little more tricky and so much more complex.
This disease became my focus. I was not willing to give her up to this disease that quickly. Not this person who was everything to our family.
After much thought and consideration, my husband made the decision to retire early so he and I could give my mom a fighting chance.
Simply accepting what was happening to her was not an option.
We were not going to give in to this disease.
We would do what we could to help her fight for her life.
We declared war on dementia---and so began the battle
for my mom's brain and her essence: The War For Rose.
Our initial goal? To stop or at least slow the progression
of this brutal disease and to give my mom at the very least
--a better quality of life.
It's been 4 full months since we became her caregivers.
We've made some huge changes in her diet
and added targeted supplements to support brain health.
We've also made some key changes in her routine and environment.
And so far we've experienced some surprising progress which
makes us hopeful that we are gaining ground.
However, we quickly learned with a disease like this,
progress is not a two steps forward and one step back dance.
It's more of a zigzag.
This disease keeps throwing us curve balls and we just have to
figure out how to hit them back.
So, in addition to my usual health coaching tips,
I'll be sharing what we are doing with my mom
in the hopes that you can help someone you love with memory loss.
In fact, the strategies I'll share will help anyone who
would like a little more focus in their life and would value
long-term brain health.
Even those who simply struggle with the "now where did I leave my keys?" or "why did I come in here?" syndrome.
(Is this you?)
Maybe you'd like to readily remember names and dates or
not get so easily distracted when you are at work or doing chores at home.
Maybe you've been diagnosed with an issue that affects your brain.
Just know that Knowledge is power.
And with this knowledge you can make educated choices for your health and the health of the ones you love.
Our brain is the epicenter of all that we are, so in my opinion,
we need to show it the respect it deserves and we should do everything we can to support its health.
We would be silly not to, right?
Maybe you will be able to start a little sooner with those lifestyle changes, invest in the nutrition and reap the long-term benefits of optimal brain health. And maybe because of your wise actions of prevention, your health span will match your life span,
and you'll live a long and healthy life.
Anyway, that's my hope. Stay tuned.
Be well, my friends
~Anne
My mom got to be around her great-grand babies at a family anniversary party this past weekend. 
She said things like "I appreciate you" and "Thanks for everything you do for us." She used sentence structures and came up with words that made us raise our eyebrows, tilt our heads and nod in wonder.
But there was one thing this week that I was especially grateful for...
