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 This would cause her to either become fearful and cry or shut down and become withdrawn.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
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
