It Takes Courage to Be A Caregiver

To love a person is to learn the song that is in their heart,

and sing it to them when they have forgotten.*

The movie Still Alice haunts me to my core and yet every time I watch it, I glean more insight and my heart breaks open a bit more.  And still, I continue to watch it when I am alone.  Why, you may ask?  Why would you make yourself sad intentionally?  Isn’t it hard enough to experience your family enduring the road that Alzheimer’s Disease and Dementia have put us on?  And the answer is yes.

But, I search for answers.  I find power within when I allow myself to feel each character’s pain.  It may sound funny to you, but I can relate to Alice, to her husband, to her daughters, all in different times in my life, and at times, simultaneously.  My compassion for the characters and for my family members increases every time I watch the movie.

I am compassionate and I love deeply.  This is who I am.  I need to understand how to best serve my family and how to best serve myself.  I have an ache in my core which carries my courage to push me to accept the unacceptable and to hold that precious gift of time, of making memories that may never stay and of holding the hands and hearts with those who at some point, may never remember who I am nor who they are.  It’s like I hold a flickering candle which I desperately protect in my soul.  I hold my candle in the darkness, like a beacon, hoping for that twinge of awareness, even if it is only for a moment.  I will feel like I did my best.  For I can’t give up on them or on myself.

I grieve in the quiet moments of solitude for them and for myself.  I call daily, visit monthly and spend hours making sure all their needs are met.  I do it with love and compassion and courage for it’s hard.  But it’s necessary and I make myself do those things that are necessary even when I want to turn away from the truth.

I learned long ago from cancer, that our lives are constantly changing and that we need to find a new normal with each and every experience.  We either choose to grow with the experience or we choose to stagnate.  We can turn our backs on the experience or we can move out of our comfort zones to find the courage to accept what we deem unacceptable and take baby steps towards a new normal.

I choose courage.  To look at my life with gratitude.  To be grateful for the opportunity to help my family.  To be kinder to myself, more patient and more present.  To sing the song in my heart and to have the courage to shine my heartlight even in the darkest night.  Come join me…take my hand and let’s sing and…

Shine On!

xo

*Photo credit:  FB Alzheimer’s Awareness

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

Hold Onto the Rainbow

Being a caregiver for loved ones with Alzheimer’s and Dementia, it’s a daily struggle for them and for us as caregivers.  Some days are harder than others.  Some moments are stormy and then when the sun breaks through with a glorious rainbow, we are rewarded with a real time reality moment of lucidity with a loved one ~ whether it be a shared trip down memory lane or a moment of recognition, a shared laugh, even a hug with the knowledge that we both know who we are.  For me, it’s the rainbow throughout the storms that their minds are enduring.

I feel compassion as I take time to observe how they live in the world of their minds.  It’s frightening when your mind doesn’t work as it used to and it’s beleaguering the point when I say it over and over that I can’t imagine how hard it must be.  We go with the flow here.  Allowing whatever comes to her mind to flow and I try to ride the wave even when the tsunami hits us.  Dogged determination takes over common sense and many times it’s wasted breath to explain.  Changing the channel, getting up to do something else or pausing to change the focus does help sometimes, but at others, it changes nothing and she perseverates all the harder on the thought at hand.

What I live for are the stolen moments of rainbows through the storm:  the laughter which releases anxiety, the connection when I’ve surprised her with a visit from an old friend of hers, the banter which we share when we travel down memory lane.

The storms pass, but get longer as the days do.  Riding this roller coaster of brain firings and misfirings is hard for us both as we travel down the end of the journey.  She longs to crawl back into my womb at times and it saddens me.  She is not my child by birth, yet she’s now my child.  If I were able to carry her, protect her and keep her with me safe and secure, I would try, but it’s not an option.  To release her as she wishes at times would be beneficial I believe, even though it saddens me a great deal.

I long for the carefree days of youth and vitality which are no longer.  I long to be held and protected myself, but I only have my own arms to do that for me.  So I take moments of peace whenever I can, to hold and to hug myself so that I can continue to have strength to do it for her as well.

It’s hard to watch a loved one’s mind deteriorate while they sometimes understand what is happening to them.  All I can do is be there for her which I am doing, heart, mind, soul and physically, seeing to her needs and allowing my own a back seat while we carry onwards to a destination which makes no sense to either of us.

Thanks for reading my blog today.  I just needed to write, to mourn, to have a quiet moment to center myself again so that when she awakens, I can be fresh as a daisy, upbeat and filled with loving kindness and empathy in order to find the rainbows whenever I can through the storms.

Shine On!

xo

 

 

Dealing With Alzheimer’s and Dementia

Our minds work in mysterious ways.  What triggers some utterances from the mouths of someone with Alzheimer’s disease and dementia can be mind-blowing to the listener as I’ve learned first hand.  The associations that they make and willfully say aloud can be very hurtful and they are not aware of the power of their words nor the sadness that it evokes to the recipient.  I try to figure out what makes their minds tick the way they do and I try desperately to unscramble the mixed messages, but to no avail.  It is heart-wrenching to witness and even harder to comfort myself and them.

I feel utterly alone.  The worst part is that they don’t remember what they say to me.  I can’t explain to them why it hurts.  I can only change the subject and move on, even when my heart is heavy with sadness, hurt and pain.  They forget what has been said when I change the subject, but I continue to remember and try to put on a happy face.  But the pain digs deep into my soul.

It is hard to manage and be a caregiver to someone whose mind is not working properly and I have two of them at present.  I’m learning the hard way to go with the flow, to deflect conversations and to change subjects quickly in order to protect myself.  I bite my tongue…a lot!  It isn’t easy.  It’s like I’m on edge during every conversation as I do not know what will come into their minds and out of their mouths.  It changes moment to moment, sometimes circling back to reality, but many times, there are misunderstandings as their brains fire and connect or disconnect at a moment’s notice.  I think it would be easier if they weren’t family members for then I wouldn’t feel the pain of the stings or hold onto their thoughts.  I would just let it be.  I would be able to rearrange the conversation later in my head and remind myself that it’s not about me, that it’s simply the disease talking.  I wouldn’t take to heart so deeply what is being said.  I wouldn’t get caught up in their confusion.  I would simply be able to redirect without trying to explain myself or reiterate for the thousandth time what the truth is or reiterate the lies that a loved one is resting instead of allowing their pain to hit them again and again.

It’s exhausting.

For them, for me, for our family, for the healthcare workers.

So today, please send out a prayer of support and healing to all who care.

Shine On!

xo