You Are Always On My Mind

Everyday without fail, I talk with my loved ones with Alzheimer’s Disease and Dementia.  Most days, I am able to live in their reality, assure them that I am only a phone call away and talk about what interests them.  I can veer the conversation towards happy thoughts and keep them peaceful, even when I’m not at peace.  I can make sure that they are getting the best care possible by keeping in constant touch with their caregivers and going to see them every month so that I can spend physical time with them to really ‘see’ how they are doing because it’s hard when I’m so faraway from where they currently reside.

They are always on my mind, but especially when there’s trouble brewing, like when one of them has a cold, cough and are sick, or when the other one’s sundowners is acting up.  It’s a vicious cycle to get one of them to bed every night and we’ve yet to find a solution to making it easier for anyone.  My Aunt’s dementia revs up at night especially and I’ve gotten the 9pm phone calls asking for help in talking with her.  As a strong-minded woman, she’s only gotten more steadfast in her beliefs that nobody puts her to bed but herself, and only when she’s good and ready (but…she’s never ready to go to bed any night of the week).  That’s the problem.

Dementia is sneaky in the way it works on the brain and the personality of the person with it.  It robs them of clear thinking and exacerbates the strong-willed portion which in turn makes it harder to help the patient to understand what is going on.  Anger ensues as the dementia takes hold more and more because the patient gets frustrated by their own thoughts and brain because their thinking gets muddled.  It truly breaks my heart to experience this as a relative, let alone to know that things don’t get better with dementia, they simply slide deeper into worse, plateau for a bit of a reprieve and begin the descent again in time.

I guess I’m feeling sad and lonely today because I’m feeling the losses more acutely these days.  I feel for my loved ones with the disease as it’s frightening for them to have a ‘crazy head’ and not remember the simplest things like what they had for breakfast or where they live now.  Sure they can carry on a decent phone conversation for a bit and many times can focus well.  But there are times when their confusion breaks my heart in ways I never knew it could break.  I know what their losses are, but much of the time, they don’t realize what they don’t remember…but I can never forget that they don’t remember and it saddens me.  Sometimes the loss cuts me deeply to my core and I hang on with all my might to the good of the day, to the gratitude that they know who I am and say they love me and hear me say it back.  Because I know, that one day it can happen that they don’t know me anymore and then the grief will begin in earnest for me, for there won’t be any going back in time, except in my memory.

If you’ve had a loved one with this mind-altering disease, then you probably understand the sadness I’m feeling today.  It’s awful to feel so helpless and to watch loved ones’ minds slip away.  It’s hard to be the strong one, to manipulate conversations to happy thoughts and to never be able to share that I’m not fine sometimes.  With them, I am fine all the time, all is well, I tell jokes, make them giggle and I repeat that I love them over and over until I can see them in person next.  I fix whatever needs to be done to make them more comfortable.  I check up on them with the nurses and I make life easy for them as best as I can.  I do it all with love, but sometimes I wish I could simply be taken care of myself as I take care of them.

Shine On!

xo

 

Enjoying Your Company ~ Caregivers Unite

Enjoying Your Company

Taking care of loved ones with Alzheimer’s Disease and Dementia isn’t easy.  I am not a full-time caregiver now, but instead I am the carer of my 2 loved ones.  We chat on the phone daily from their home where they have full-time caregivers on staff.  But I know the tremendous worry that many caregivers feel when being faced with 24/7 caring for those whose cognitive function isn’t where it used to be.

It is hard to let go of the loved one’s cognitive abilities.  Sometimes we are given the gift of full on focus for which I am ever grateful.  Sometimes the lucidity floats in and out and sometimes it’s just not really there.  It’s a hard road to travel for the patient with the disease.  I know that once the turning point comes, it’s easier for all involved.  Once the patient has crossed over to not realizing how much memory they have lost, it is a blessing as they find a sense of peace.  It’s a good thing even though it is harder for the family.  Not to say that either of my loved ones have fully gone from their minds.  They have not.  They are still here, hanging in there, daily.  But the letting go of, ‘I think I’m losing my mind’ has finally happened and we are able to go on without their worry that they are losing their minds.  It’s been a blessing really because the strife is diminished and that is good for them.  For me, not so much, but then it’s not about me.  It’s about the peace within them as I imagine how frustrating and hard it is to realize that you are losing your memory.

I’ve learned to simply enjoy their company.  Yes, it is that simple.  Take out the worry, the regret, the sadness of “I wish things were different” and just enjoy who they are, for who they are right in this present moment.  For the next moment may be different and we can never tell the future.

But I have to be fair here.  It is hard for carers and caregivers alike to converse, to interact and to find peace in this new reality.  I read others’ blogs who have loved ones with memory issues and I understand.  I want to hug them as much as I long to be hugged.  Generally it’s hard when our loved ones aren’t the same as we knew them.  Learning to shift our thinking is hard and many of us mourn the ones we knew before the memory loss.  It’s a banner moment when we see glimpses of our loved one before the memory issues began.

Because for me, I mourn the loss of family.  I call daily to speak with them and pray that they are doing well that day.  I watch what I say and I listen for the subtle and sometimes not so subtle signs as to gauge how well they are doing cognitively in that moment.  I err on the side of less reality is better, meaning I keep news that isn’t happy to myself.  I don’t share it because in their world, any upset doesn’t serve them nor me.  Occasionally I will venture to say something about another family member’s health which isn’t great at this point, but I always make sure that I do it in the mornings so that they are clearly thinking because many times, as the afternoon sun begins its descent, cognitive abilities do the same.  Not always, but it happens.

I think it’s important to stay connected and the more giggles, jokes and memories that we can share, perhaps the longer they will know me, will stay connected with me and keep the disease descent further from our present moment.  I know it’s a gamble because the disease will eventually run its course, plateau for a bit and then descend further, taking them further from me.  But in the meantime, my will to keep them here, knowing me and each other is foremost in my heart and mind.  It won’t be without a huge fight from me that Alzheimer’s and Dementia will take away my loved ones.

Because, as you know, I’m a lover and a fighter and I will fight for my loved ones because I love them with my whole heart.  I know that those of you who have experienced these diseases with loved ones or even with yourself (I read your blogs), my heart envelopes you as well.  It’s not a fair disease, but then there’s none that I can name that are fair to any of us.  I know there’s no cure, but at least we can try to keep it at bay with a few of the medicines offered today.

And I can lay my head upon my pillow every night after my prayers and know that at least, today, they knew who I was, we laughed together, blew kisses into the phone to each other and we have my next visit to look forward to soon.  At the end of the day, it was a very good day.  We’ve got to be grateful for each and every little present moment that we have in this big ole world for we can’t control tomorrow and after all, as Scarlett said, “Tomorrow is another day.”

Shine On!

xo

There’s No Place Like Home

“There’s no place like home” ~ Dorothy in The Wizard of Oz

With Alzheimer’s Disease and Dementia, many patients get confused towards the end of the day and want to go home.  It’s not necessarily to the last home they inhabited, but to their childhood home, even though they seem to mix them up in their minds.  Many times during a sundowners episode, my Aunt will want to ‘go home’ to her childhood home, believing that she needs to feed her Mama and take care of her siblings even though most of them have passed away.  She was a caregiver until the disease took her mind so I believe because the role is so ingrained in her, she returns to that role time and time again.  Then again, many times she believes she is home in the place where she now resides.  It is confusing to us all how her mind works and reworks reality as time goes on.

When it is explained with kindness that most of her family have passed away, she is saddened by the news, explaining that ‘she didn’t know,’ even though she has been repeatedly told this information.  Many times distraction helps to alleviate her need to ‘go home’ without having to sadden her unnecessarily about her loved ones being already passed away even though she was present during that time in her life when it happened.  Intentionally we use distraction instead of reality in order to ease her mind and worry.  Living in her present is more beneficial to her than repeatedly hurting her with sad news that will not stay in her head.

Weather, barometric pressure changes and moon phases all play a part in the severity of sundowners.  Loved ones with sundowners get agitated easily at dusk and the need to go with the flow of their thinking is crucial.  Lucky for us, my Aunt has a mouth full of ‘sweet teeth’ so chocolate kisses help immensely when she’s not in the mood to put on her pjs or go to bed.  A few delectable chocolate kisses on a pillow make for sweet dreams and a calmer patient when she’s irritable.  Patience is key as well since rushing a patient simply doesn’t serve the situation since we are on ‘their time’ and not our own.

Do you have a loved one with Alzheimer’s and Dementia?  Do they confuse home as well?  Do they return to their long-term childhood memories easier than the short-term of the last 10+ years?

For me, home is where the heart is and I wish yours to be safe, happy and filled with love.

Shine On!

xo

 

 

*Photo Credit from PrettyCleverFilms

Through the Eyes of A Caregiver

When I was diagnosed with breast cancer, I learned all about it, from researching, googling, reading, talking with others and experiencing the illness through my body, mind and spirit.  I know more about breast cancer and its effects on women and families than I ever wanted to know.  But it has made me who I am today and for that, I am grateful.  I learned much about myself and the inner strength that I have come to rely on in my life.

Now that I have two family members battling Alzheimer’s and Dementia, my research has begun again in earnest.  This time it’s not so much about the body, but more about the mind and as the caregiver this time and not the patient, my brain works overtime as does my patience.

The mind baffles me with its twists and turns with these diseases.  In my research, I came upon the video below which brought me to tears and humbleness.  As caregivers, we may lose our patience when asked for the umpteenth time the same question or when we are unsuccessfully trying to reassure an anxiety-ridden loved one whose brain is captured by a riddle.  But we never know what they are enduring as their brains muddle through moment to moment, grasping and disconnecting at will.  Their brains only deal with the present moment and that is their reality which changes.  Talk about truly living in the present and working on finding peace in every single moment!

Perhaps this will give you a little insight as it did me.  If you are a caregiver or love someone with Alzheimer’s and Dementia, please connect with me.  Just as it helped me when I endured breast cancer, I believe that as always our connections only make us stronger.

Shine On!

xo