Archives

Sundowners and Alzheimer’s Disease

sundownersandalzheimersdisease.PNG

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

swingingwith mom

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

 

Begin Again

beginagain

A friend gave me a magnet awhile back in anticipation for all of the changes that were in store for my future.  At the time, I didn’t want to Begin Again as it was daunting for me to think about all that would be changed.  Regardless of how much I didn’t want the changes, they happened anyway, out of my control.  Instead of accepting that my life would dramatically change in all ways – divorce, moving, financially, health-wise, etc., I fought like a tigress to remain in that stagnant limbo of wanting no change, all while change happened anyway.

Finally, I surrendered.

Broken, exhausted and drained, I surrendered.

It’s not that I didn’t agree that the changes were imminent and necessary.  It was that I was fearful of how I would continue on in this uncharted territory for my journey and the journey of my children, for it wasn’t where I wanted to be.  But when I stopped fighting against the rising tide and began to doggy paddle to keep afloat, I received help through the transition.  Angels disguised as friends and strangers reached out to me with kindness.  I began to see the future as a new chapter in my life, a new book on which to write my story and a fresh clean slate which I controlled (for the most part) of how I am the captain of my own life’s ship.

I began planning what had to be done and like a sergeant, began the transition with what I hoped would be military precision.  But alas, I may have had a plethora of military family members, but precision has not been a characteristic blessing unto me.  And so it was, I surrendered.  I did my best daily, fell asleep on my pillow with a bone tired body and rose up the next morning to do it all again.  And finally, it was accomplished, through the help of my angelic human angels.

Now we begin again, in a new home with new challenges.  Regardless, I have surrendered what was and I embrace what is and I plan for what I would like to be.  To Begin Again requires letting go of the past and staying in a peaceful present and allowing a hopeful future to blossom, petal by petal.

I am grateful for the peace within now.  Although transitions are often fraught with wiggles and compromises, I knowingly stand with peace in my heart, grateful for the lessons and learning which have come with the experiences I’ve endured.  I’ve learned so much about people, about myself and about love.  Life lessons have been tough at times, but well-worth the growth that came out of them.  Sure, it’s easy in hindsight to feel this way, but I guess I wanted to share with you so that you can remember that there is light at the end of the tunnel.  We just have to keep walking towards the light.

I’m here for you if you are going through any transitions as I’ve been through a bunch of different ones:  cancer, multiple surgeries, chemo, radiation, divorce, selling a house, finding the right rental, starting over at 50, death of family, family with Alzheimer’s and Dementia, etc.  If you need a friend, here I am, with my arms wide open for a hug.

Shine On!

xo

 

 

Lying and Alzheimers Disease

LYINGANDALZHEIMERSDISEASE

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

onmyknees

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

 

 

The Present Moment

pinkflower

With the uncertainty of life, we let go when we have exhausted all means of control.  Sometimes it takes us longer to finally come to the conclusion that there are simply parts of life that we must allow for we cannot stop them.  For a planner like me, it’s always felt unacceptable.  Searching my brain, I would try to come up with endless ways to make whatever situation better for me, my family, my friends ~ relentlessly trying to improve a situation that I found unacceptable because it was causing someone else or me pain.

But there are times now, after sleepless nights of fret, worry and planning, that I am learning, albeit slowly, to let go and to allow God and the Universe to proceed.  What I’ve learned in the wee hours of the morning is to go with the flow, release, let the river take its course and have faith that as long as I can put my head on the pillow in peace, knowing I have done all with a loving heart, there is nothing more I can do.

However, it’s hard ~ this letting go.  So I am learning to let go and let God ~ and let Him in.

I think it’s human nature to believe we’ve got this, we can figure it out and make it work.  But we forget that there is God, the Universe and the Laws of Attraction who also carry us when we allow them to work their ‘magic’ as well.

Being in the present moment is a life lesson worth learning for me.  I am watching my Mom struggle with Alzheimer’s and being in the present moment with her.  Sometimes her present moment isn’t ‘reality’ but wherever her brain is at the time.  So to honor her, we gather in her present moment and support her, enjoying whatever gifts we can.

It’s a shift of thinking that has taken me a long time to accept and to process in my own brain.  However, love is accepting and above all, I love my Mom.  So I accept where she is at any given moment.  I’ve come a long way baby, but I still have much to learn.

Isn’t that the way life school is anyway?  Learn, practice and love?

Shine On!

xo

Alzheimer’s Disease and Telling a Loved One About a Death

alzheimersflowerMy Mom recently lost her sister with whom she lived in a memory care facility.  It broke my heart to deliver the news to her, so I remained mum for a while and didn’t tell her.  She believed our Aunt was still alive in the hospital for longer than she was, as we contemplated how to tell her the sad news.

But God and the Universe had different plans.  For you see, her resident friends who knew Aunt Mable were also concerned about Aunt Mable and wondered when she would return home.  Mom was told that she was still in the hospital getting treatment, but in truth, she had passed away.  Little could any of us know that one little lady, who is wheelchair bound, blind and has hallucinations along with memory issues would be able to succeed in calling the hospital in hopes that Mom could talk with Aunt Mable and get more information.  A miracle unto itself that she accomplished this with her cell phone.  Sadly, she got the news that Mable had passed away and in a loving manner told Mom.  I know she thought she was helping, but her announcement wasn’t what we had planned.  We were trying to get to Mom to tell her ourselves in person.

Looking through the eyes of an observer, this little lady’s heart was in the right place.  She saw our Mom upset and wanted to help and when I see the situation with a loving heart, I am grateful.  But in that moment when Mom reached out to me, sobbing that she had heard that her sister had passed away and was frantic, I felt powerless.  I had wanted so much to shield Mom from the pain and be there when she found out in order to help her through her grief.  In the end though, life unfolded as it was meant to be.

It is hard for anyone with memory issues to remember, let alone to keep the information that a loved one has passed away, for their ability to remember fades and rallies, moment to moment.  The acceptance of what feels unacceptable (a death of a sister) is too much for the mind to handle and it fades, only to return after a bit and the grief begins again.  It’s a roller coaster for all involved as we try so desperately to soothe a broken heart as the knowledge comes and goes, along with the grief.

There’s no easy way and from my experiences, the only rule is to keep a loving heart, flow with the moment’s understanding and continue to offer love and support to Mom.  That’s all we can do in every situation quite honestly.  Be open, be kind and love.

May you find your Sunday to be filled with peace and love, this is my wish always.

Shine On!

xo