Hearing that your family member has dementia is like being
hit in the stomach with a steel baseball bat.
It is an horrible disease that takes your loved away and
you mourn them even though they are still alive.
They become shadows of their former self.
I had never heard of dementia but helped take care of my grandmother's late husband
that had Alzheimer's. So I am familiar with the decline and it effects.
He would forget when he ate and was always hungry like a bear or thirsty like a fish.
A few times he ate an entire bottle of vitamin c and left the burners on the stove.
We learned to hide all bottles, change the locks to deadbolts,
remove the knobs off the stove and sleep with one eye open.
It was not uncommon for him to start wandering in the middle of the night and one time I awoke to find him urinating on my shoe rack. He was totally unaware of what was happening or what he
was doing. His mind was elsewhere and there was no bringing him back.
Dementia is similar because it also deals with memory loss but it is
different in many ways.
My grandmother or Yaya as my daughters have lovingly nicknamed her, was
diagnosed about 5 years ago with early on set dementia.
The doctor told me that he can't tell me why she got it other than it is common
for people of her age to develop it. She would have been 84 at that time.
At first it was simple memory loss things like the placement of items,
appointments and nothing to really worry about.
Then it gradually became a common thing and she would think that someone stole her things when she couldn't find them. This got worse as she began to hide her belonging thinking that people were stealing from her.
One time she misplaced a ring and thought her friend stole it from her room and accused the friend of stealing. I bought her friend a bouquet of flowers and explained as well as apologised on her behalf.
At times it seemed as though the forgetful part was the only affect and it was manageable. As soon as something went missing I would make sure to find it to for her and put it somewhere visible. I would leave notes all over her room as to the whereabouts and how things worked.
Then just like that.....she declined and the dementia took another layer from her .
A woman that could speak 7 languages couldn't recite that alphabet completely or name a tiger in English or Spanish. She could not remember how or what you call a picture of a camel during a MoCA test.
The following week I took her to the geriatric specialist extremely upset because I have never seen my abuela like that. He then explained the stages of dementia and how each person declines at different rates. No way of telling how or when each person declines.
I wish the time frames were set in stone and I could get more time with my abuela but they are all approximations and different things can accelerate it.
After spending a week in the hospital her dementia took even more of her away and left her wishing for death.
She doesn't want to eat or leave her room and tells me that she just wants to die.
After a few hours of researching I came across this article
which explains alot of her current behaviours.
Right now all I am doing all I can do, bringing her favourite foods and showering her with love.
I wish I could tell you it's not that bad but its worse than you think.
You will spend countless sleepless nights and days crying and mourning them.
It will rip your heart out of you chest every time you see less and less of them present
you will find strength in the love you share because you know who they really are.
That they are still there somewhere deep down and they are still your loved one. Even though they might have already forgotten.
Here are some tips I use to help myself cope ,
LOVE THEM MORE - remember that although they might forget who you are, their heart still feels the love and they will automatically feel comfortable and good around you.
TURN UP THE MUSIC-when the pain is unbearable put your favourite band or song on. I love Linkin Park and Fuego. I turn the music up so loud I can feel the beat in my chest. It helps me think about something else . To know that this is not my whole life.
PUSH THROUGH THE PAIN AND SADNESS-try to keep a normal schedule, do what you always have done and need to do. Nothing is going to change the dementia but dwelling on it will only magnify it.
GET OUTSIDE- nothing feels better than fresh air and sunlight. Go for a walk or work in your garden. If you live in a cold climate like me, go to a greenhouse until it warms up.
PRAY- I find my strength in prayer but if you are atheist then this wont apply to you.
TREAT YOURSELF-be kind and loving to yourself so that you can be kind and loving to them.
MAKE NEW MEMORIES- one of our traditions is to watch The Sound of Music but she doesn't want to leave her room , so I brought the movie to her. Adjust them to fit the circumstances. Go with the flow and enjoy the moments you have with them.
DON'T ARGUE WITH THEM-many times she was certain that someone had stolen from her and I only focused on locating the item. Not trying to point out that her belief was wrong and making her feel bad. In their minds it is very real so just fix the problem without discussion.
TREAT THEM WITH DIGNITY- they already feel embarrassed because they know something is wrong with them. Don't add to it by making a big deal out of accidents. Alot of times I have cleaned up urine and vomit and make like its a common thing in my world.
MAKE JOKES- laughter is a miracle worker. It lightens the worse of moments. One time when we were in Walmart , abuela looked in the mirror and said she was so old wrinkled and ugly. So I told her that even as old and wrinkled as she was....she was still more beautiful than some of these young girls in store. She laughed and told me " the things you say". We were in Walmart which is the perfect store to prove my point too. Nothing against Walmart the store, its just some of the customers are less than stellar.
PLAY THEIR FAVOURITE MUSIC OR MOVIE- whenever I feel abuela distant or sad I put on one of her favourite artists. It makes her so happy to hear or see someone she remembers on the TV. They say that music has therapeutic affects.
That is what they need the most.
Their memories are being wiped out like a virus in a hard drive.
Can't imagine how that feels but I see the effects and all I can do is hold her up
and hold her hand through it all.
If you have a loved one with dementia hold on..
take a deep breathe
and I wish you strength.