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Sundowners and Alzheimer’s Disease

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One of the challenges with having a loved one with Alzheimer’s Disease is sundowners.  Sundowners is a symptom of Alzheimer’s and Dementia whereby your loved one becomes more confused mentally towards the end of the day (hence the name).  There are wide variations of sundowners including utter confusion, wandering, aggression, shadowing (meaning they follow you around), repeatedly asking questions that they do not remember that they’ve asked and rapid mood changes which can range from crying (depression) to fear to stubbornness to restlessness and even to rocking back and forth in an effort to self-soothe.  Not all of the symptoms of sundowners occur every night, nor are they the same for every person.  I’ve written about it before here in case you are interested.

My Aunt suffered from sundowners which was hard on her and on her caregivers.  It always seemed to increase in intensity when the moon was full, when we changed to/from daylight savings time and when the seasons changed.  I think there’s more to outside forces than we may think!

My Mom has occasional bouts of sundowners as well, but confusion is her main symptom.  We were having a conversation recently after 6pm which was lovely when suddenly, her knowledge base fell completely out of her head.  We had been discussing my children, her grandchildren, whom she knew by name, by age and was interactively talking about them when suddenly she interrupted me,

I have to ask you.  Do you have children?

Yes, Mom.  I have children.  You have grandchildren!

Oh my, I didn’t know you were old enough to have children.  How many do you have?  Do they live with you?

I have to say that years ago, I would have been utterly distraught to hear her ask me that question right in the middle of talking about my children when she was fully cognizant of their presence, knowing who they are and having seen them recently.  But I have learned that Alzheimer’s is sneaky and can interrupt a loved one’s knowledge base in a split second, rendering them unaware.  So I simply continued the conversation with her, telling her about my children and reminding her gently of their names.

Suddenly, it was like she was back in her mind and she began reminiscing about them with memories of their childhood that she knew.  We laughed together and enjoyed the connection.  This went on for a bit when suddenly the blip happened again and we had to begin all over.  Then at one point, she was thinking that I was her sister and was asking me if I remembered certain things about her childhood.  But all along the conversation, one part was perfectly clear – my Mom loves me, trusts me and knows my name for which I am ever grateful!  That is the piece of peace that stays with me long after confusing conversations and even throughout them.  My Mom loves me and knows how much I love her – what more can you ask for?

I have to remind myself that it’s just part of the disease.  As I’ve written before, when we stay calm, we can flow with whatever comes up.  It’s taken me a long time to get to this place of peace and acceptance.  I had to get the belief that this isn’t how it should be out of my head and simply accept and be with what is.

I keep her sense of calm foremost in my head.  I keep conversations light and happy.  I do answer her questions with truth when she asks, if I think that they will not hurt her.  But as you have seen, Swinging With Mom sometimes we have to repeat the truth which is hard.  It takes patience, love and a sense of humor to love everyone and Mom is here to remind me to strengthen the bonds of love and acceptance for all who are in my life.  Thank you Mommy!

Shine On!

xo

 

Swinging With Mom

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There are times in life when we question whether the truth should be revealed or if we should leave well enough alone.  Having a parent with Alzheimer’s, I hop on the porch swing with Mom daily.  Growing up in the South, her childhood home had a porch swing which we all remember fondly.  Due to her disease though, I never know where we are on the porch swing when we come together to enjoy an afternoon.  Sometimes we are in the past, sometimes we are in the present and sometimes reality gets muddied.  It changes sometimes very quickly so I am never sure where she is at any given moment.

Mom is a happy and healthy otherwise.  When she is in the moment, a great Present of Presence, we talk about the day and enjoy a chocolate milkshake because everything is happier with ice cream.  We laugh and joke and nothing makes me feel better than to hear her laugh.  I will say outrageous things to her just to see if she’s actually listening to me or if she is taking her cues from reading my expression.  I will ask her to recount  funny stories from her past, sometimes initializing stories I have heard hundreds of times before, just to hear her tell them to me again and to share a laugh.

Her sister passed away earlier this year and because they lived in the same home, it was hard on Mom.  With Alzheimer’s, they stay calm in the moment when something doesn’t trigger a memory and believe me, I try to stay in the moment with her often.  But when I went to visit the other day, chocolate milkshakes in hand as per our tradition, after a few moments, she told me how sad she was that her sister Mable had passed away.  I wrote about it here.  She told me how she missed her and how she was sad that she hadn’t attended her funeral.  I assured her that she had and that she had been with her whole family, seen her childhood home and reminisced over countless photos surrounded by her loving extended family.  She listened carefully and calmly told me she didn’t remember any of it, but that she was grateful that she had been there.

Then she began to talk about my Dad who passed away years ago.  She was angry that he hadn’t been talking with her and she didn’t know where he was.  She was embroiled in the hurt and anger that she felt because he wasn’t here with her.  I debated for quite awhile as she told her side of the story and how if he wasn’t talking with her, then she would not reach out to him (mind you, she didn’t know how to get in touch with him).  I took her hand in mine, looked into her eyes and spoke the words I dreaded saying again.

Mom, I am sorry to tell you this, but Daddy passed away.

What?  He’s dead?  Tears began to well up in her eyes and I immediately felt so badly.  We have had this conversation countless times since he passed away and it hurt me to tell her and have her hurt again.  But in my heart, I didn’t want her to feel that he had abandoned her by not being here.

Yes, Mommy.  He passed away a few years ago.

Oh, I didn’t know.  Oh my, where is he buried?  Did I go to the funeral?

As I began to answer her questions, it soothed her to know that she had indeed been there, that his funeral was greatly attended and then I threw in a few giggles that only our family could at a time like this – because I couldn’t stand seeing her so upset.  I soothed her sadness with love and light and hugged her, trying to heal her hurting heart.

I guess I”m losing my mind here.  I just don’t remember anymore.

It’s ok.  It happens to the best of us Mom.

It’s better sometimes to allow the grief to fade and to concentrate on today, on our milk shakes and our happy times.

So, I snuggled up to her, like only a daughter can, on her bed, by her side, holding her as if she were my daughter and reversed the roles.  She held on tightly in my embrace and my heart overflowed with sadness and yet, with gratitude for this one precious moment.

Moms comfort their children throughout their lives.  That’s what we do.  But sometimes, there comes a time when the roles reverse and we are our Mother’s Mother.  We comfort and soothe in the maternal way we learned through our Moms.

I wish she didn’t have this disease for it has robbed her of her memory.  But I am also truly grateful that she remains in there, loving us with all her might and knowing who we are.  Sometimes we just know that these moments are precious and are to be treasured.  Isn’t that what life’s about?  Stringing together those precious pearls of connection?  And swinging on a porch swing, sipping a chocolate milkshake and enjoying the calm in a Southern hospitality way?

Shine On!

xo

 

The Benefits In Troubles and Challenges

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If you read the title of my post today and scoffed, I don’t blame you.  When I wrote it, I scoffed a bit too because frankly, who wants to be grateful for troubles and challenges?  Heck, those are things we shy away from, even run from as fast as possible!

Who is their right mind would say there are benefits in troubles and challenges?

Me!  And maybe even you?!

Because I’ve endured quite a few, (cancer, divorce, family with Alzheimer’s and Dementia, death of family, just to name a few), I can attest to their benefits (of course, this is AFTER they happened).  After the fact, we can see how individual challenges make us grow and strengthen us.  The challenges force us, sometimes unwillingly, to look at our lives with a different perspective.  They inspire us to deep deeper into ourselves to find the strength, the courage, and the inspiration to get through the difficult times.  We find out what we are really made of when we have challenges in life.  We are offered choices on life’s path and the beauty that we can choose again at any time makes life interesting.  Challenges and growth opportunities allow us to see how far we’ve come in our lives.

We can see troubles and challenges as building blocks on the road to life.  Our ability to endure them and to triumph over them (or to not) shapes us in different ways.  We enable our innate personality traits to be tweaked.  We learn new ways of coping.  We tune our minds into new avenues of solutions.  We can make new friends who open our eyes to finding peace in stressful situations.

The potential for growth, mentally, emotionally and psychologically during troubles and challenges can be exponential.  True, it can be maddening and frustrating as heck to have to deal with difficulties, but the benefits in the end, can outweigh the discomforts.

I know, you are probably thinking that I just don’t understand your troubles and challenges and you are right.  We all have our own path, but as I have found, they sometimes intersect and we can walk a path together with a friend (or a stranger who becomes a friend) and we can help each other, and support each other as we move through the tough times.

At least that’s been my experience throughout this lifetime.  I find that the higher power in my life, call it what you may, God, Universe, Infinite Spirit, your own higher power – helps me along the way through the hard times by planting strangers disguised as angels, friends, synchronizations, coincidences, etc. in order to help me overcome whatever is holding me back.  These in turn encourage me to grow, to learn and to accept what previously I may have deemed unacceptable.  But in the long run, I know that they were necessary growth spurts to get to me to where I am now.

It’s hard to believe for some of us that there’s a light at the end of a dark tunnel and that in the end, all the hard times were worth the changes that were hard won.  It’s mind-blowing at times that we can see in hindsight the benefits that come after enduring these life lessons.

But they are there.  Truly, they are there.

So please, if you are wondering if it’s karma or back luck or whatever you are thinking in order to blame the bad that’s going on in your life right now, just stop.  Accept it.  Keep going through it and move on.

That light at the end of the tunnel is beckoning you with sunshine!  Come on, hold my hand.  I’ll walk the path with you!

Shine On!

xo

 

 

I’m Fine

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The average person tells 4 lies a day

or 1460 a year;

a total of 86,700 by the age of 60. 

And the most common lie is:

I’m fine.

How many of us go about our day telling ourselves and anyone else who asks, “I’m fine,” even when we know we aren’t.  Denying the state of unrest within us doesn’t do anyone else any good, least of all ourselves.

Sure there are those of us who think we are inner powerhouses, who believe innately that we can work through the chaos and if we just put a little more effort into it, we can survive.  We continue to take each hurdle as it comes and keep moving forward, even when our body, mind, heart and soul yearn to rest.  But there’s no rest when we are amidst chaos.  We can’t let someone else down, nor ourselves.  We have to keep on, keeping on, in order to make it through, putting our best foot forward, because we are the responsible ones.  We are the ones whom everyone else is counting on and we just can’t let them down, nor can we face that sorry fact that we need help where we are.

If we were observant, we would face the truth and tell ourselves to reach out and we would know in our hearts that there are people who can and would help us.  Sometimes we do reach out, but if the person to whom we reach out can’t help us or won’t help us, we are doubly determined to just do it alone.  And so goes on that vicious circle of “I’m fine.”

But honestly. we are not alone.  You are not alone, nor am I.

And at times, we are certainly, NOT FINE.

Sure, I could tell you to rest and allow the weight of the world to fall off your shoulders at night so that you could sleep in peace.  You could hang your worries on a branch and give them over to God.  You could pray for solutions and look for signs from above.  You could reach out to friends and family for support or to trained professionals for guidance.  You could hire someone to do what it is you are so determined to do yourself.  It all depends on what is weighing you down and what is not fine.

But will you do that?

It’s a choice to get help when things are chaotic (and even when they aren’t).  It’s a letting go of the control and of the belief that I can do it.  It’s dropping the role that you’ve lead your entire life of being the responsible one and taking on obligations that maybe weren’t really even yours in the first place, but because nobody else stepped up, you did.

There will be those who criticize you if you choose to allow yourself to honestly say, “I’m not fine.”  There will be those who simply don’t understand what’s so hard for you when they look from the outside with their perception into your life.  There are those who will turn their backs and walk away.  Then there will be those who stay, who hold your hand, listen and pick up a shovel to help you get rid of the mess.

Those are the ones I want at my side.  What about you?

Trust in those who hold your hand with a loving heart space.  Allow their kindness, generosity and love to heal you, to help you and to ease the burdens you carry.  Trust in God that He can help you through these tough times.  And for goodness sake, get rid of the I’m fine, except when you know it will fall on deaf ears or when you really mean it.  Trust in I’m not fine, with those whose hearts are open to yours.

So if you’re asking me, “I’m not fine” today, but as Scarlett O’Hara once said, “Tomorrow is another day.”

How are you?

Shine On!

xo

Lying and Alzheimers Disease

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If you have a loved one with Alzheimer’s Disease or Dementia, you’ve probably told a fib or two, or perhaps better said, you’ve stretched the truth in order to spare them pain.  I know I have.  I was recently talking with a friend whose Momma is dear to my heart and we were discussing how we’ve stretched the truth at times in order to keep our loved ones’ minds at peace.  My friend was sharing how she worries about the tall tales we have used to cover up the truth when faced with uneasy questions.  The subject of the Good Book and Judgement Day came up.

Do you think we’d be forgiven for the lies, even though they were said with a loving heart and in the hopes of calming the confused minds of our loved ones?

What do you think?

Please don’t misunderstand my intentions.  I’m not advocating lying.  I’m simply putting it out there for discussion among those who are in the Alzheimer’s and Dementia community.  I want to know if you have fibbed and what you think about it.  Let me clarify, I didn’t just decide to fib on a whim.  My intentions were to soothe their confused minds and to give them peace and let them be happy in the present moment.  They have grieved enough in this lifetime.

For me, I have fibbed when I felt it necessary to not cause my loved ones repeated emotional pain.  I have measured and taken my cues from my loved ones’ emotional status when they’ve asked me hard questions repeatedly about someone – for example, “Where is he/she?”  Instead of telling the truth outright, “They passed away,” (and you’ve known that, but you can’t remember it), I’ve learned to ask them, “Where do you think he/she is?”  Many times, I have gone along with whatever they are thinking which has brought them peace.  I’ve also been known to answer in vague terms, such as, “I know if she/he could be here, they would be.  They are looking out for you still.  Yes, they are at home,” (but I’m meaning their spiritual home and the confused mind is thinking the physical home).

I’ve found that being in the moment with loved ones with memory problems is hard when we know the reality, but easier, when we put their hearts first.  There are times when they know their loved ones have passed away and the tears of sadness that ensue are heart-wrenching for us all.  They remember that they died and the sadness is all-encompassing even though they had forgotten that they knew.  There are times when they ask for validation and I am careful to make sure I check to see what they are remembering before I answer.  For if they remember that so and so passed away, it is nothing but an insult to lie at that point.  Truth given with love soothes the confused mind many times.  And yet, at others, there is no soothing truth.  It is simply a moment filled with anguish and peace is nowhere to be found.

I have learned that changing the subject often helps in some situations.  Repeatedly going down that sad path of loss can be detoured when we change the subject drastically.  Heaven knows, I’ve interrupted that path often with the offer of a cookie or a Hershey’s kiss or just by telling them, “I love you so much!” and following up with a hug.  Sometimes it works…and sometimes it doesn’t.  But it’s worth a try.

I know there are different degrees of memory loss as it is a progressive disease.  Even moment to moment, I have seen clarity, then confusion, changing in a few minutes span of time.  It’s a roller coaster ride sometimes and hard to manage for all of us.  I can’t even begin to imagine how it is for them when thoughts can be fleeting, words elusive and memory blurred or simply out of reach.

So, what are your thoughts?  Do you fib sometimes?  Do you have any tips for redirecting conversations?  What works for you and your loved ones?  What doesn’t work?  Please share!

Shine On!

xo

On My Knees

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As you’ve seen in my last few posts, life has been hard these days.  For me, writing is my outlet, sharing what I think might help someone else who is a caregiver of someone whom they love who has Alzheimer’s Disease and Dementia.  I write in order to connect with others who are walking this path because we understand how emotional it can be and you just need support from others who get it.

There is no cure for this disease.  It is fatal.  As the mind shuts down, the body begins its journey as well.  It’s genetic as well, which means that those of us with relatives with the disease, can be subject to it in the future.

Think about that for a moment…what you may be witnessing as a child of a parent with Alzheimer’s, may be you one day.  It puts a terrible spin on the whole experience, don’t you think?  For then, with that knowledge, we wonder if we have it and every tidbit of forgetfulness becomes a full blown worry if it’s early onset of the disease.

Just because a parent has the disease, doesn’t necessarily mean that the offspring will develop it though, which is good news.  For it’s hard enough to watch a loved one struggle to hold onto information, recognize people and remember that loved ones have passed away.  The incessant questioning and cycles of repetition can make it hard to be patient, especially when we are hurting as well.  In truth, I’ve cried a boatload of tears lately in frustration and sadness in feeling so helpless.

The power of prayer and faith helps.  When I can’t stop trying to fix the situation or at least better it, I find that getting on my knees to pray helps quiet my mind.  Simply handing it over to God for the night, once I finally let go, let Him in and let God take it from here that is.  I’m a tough cookie.  I like to keep a handle on things so it’s harder for me to allow the Universe and God to hold onto everything while I sleep. But it helps so much.

Do you ever find yourself on your knees praying when all else fails?

Shine On!

xo

 

 

Sundowning and Alzheimer’s Disease

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Confusion, extreme confusion, often comes during late afternoon or at night for those with Alzheimer’s and so that’s why it’s called sundowning.  Lately, we’ve seen it come and go at all times of day, with no predictable time frame.

Watching a loved one fret and worry is exhausting for the loved one with Alzheimer’s Disease and Dementia and for those of us who care for them.  As the mind whirls into a vortex of unpredictability, thoughts firing at random, words tumbling out nonsensically, a helplessness sinks in and an urgency to help in any way possible to allow for peace and tranquility.

When sleep can be encouraged, it seems to dilute the chaos in their minds, allowing our loved one a little peace.  Changing the subject to one of love and beauty helps as well, but sometimes that button cannot be unpushed, the channel cannot be changed and we all whirl in the frenzy for a bit.

Have you ever experienced this as a caregiver of a loved one?

It’s not easy to remain untouched by the emotionality of the situation, let alone what is unknowingly coming out of their mouth.  Thoughts flicker, reality surges and fades and my heart breaks wide open with sadness for I cannot even begin to fathom how hard this is for her, let alone for me.

This disease is just so hard and old age, as the adage goes, ‘ain’t for sissies.’

Shine On!

xo