To See or Not To See

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Last night I came across a woman’s blog about her mother having been diagnosed with Alzheimer’s. The story is similar to  many families hearing the news and learning to deal with it. However, she said there was a “silver lining” in this as her mother progressed in the disease. It seems her mother was the kind of person who was easily angered and didn’t always show the kind of affection one would have from a parent.

The “silver lining” for her was how her mother has changed to a loving and kind person. She smiles and brings some joy to her daughter.

As I was reading the comments from various individuals there was one that stood out; the person was clearly still very angry about their loved one having the disease. They stated there was no “silver lining” anywhere because this is a horrible disease. Yes, they are right. It is a horrible disease.

I learned through my journey that we look for those “crumbs” of something good. Doing so allows you, the caregiver or family member, to come to grips that this person does, in fact, have dementia and it’s not going to get better. Why not find something positive in the moment?

For me, I became closer to my mother than I ever had growing up. I had a great childhood; couldn’t ask for better parents. Only I wasn’t super close to  my mother during those years. As I became an adult that started to change, and when I became her caregiver, it was the closest relationship I ever experienced. In a sense, it was my “silver lining”.

There are families that may never find that “silver lining” as they live with a loved one with any form of dementia. Is that flawed? Not in the least. As I’ve said before, everyone deals with their situation in different ways. There is no “right” or “wrong” if you don’t see a “silver lining”.

What I will say, is you must learn how to cope and deal with the situation where you don’t put yourself in danger with health issues.

As hard as it may seem at the present time, at some point, you will find or see something good or positive or even a “silver lining” that will help you view this despicable disease in another light. Maybe it’s a smile you haven’t seen from your loved one in a long time, or maybe they have a lucid moment and actually talk to you like they used to. Remember, it’s the “crumbs”.

Keep an open mind and look for the “crumbs”, they’re there, you just can’t see them yet.

“I will turn their mourning into gladness; I will give them comfort and joy instead of sorrow.” Jeremiah 31:13

 

Silent Night, A Holy Night

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Today, the day after Christmas, I just felt like sharing some personal thoughts.

Christmas Eve was the anniversary of my Mother’s passing in 2011. I realized I had not been in a “funk” about that day fast approaching; quite the contrary. I knew I was going to be with my family that evening; starting it off with a beautiful song-filled candlelight service.

I was enjoying all the beautiful caroles just “being” in the moment when Silent Night was the next song the worship team began singing. As everyone joined in with those beautiful words, my mind drifted for just a brief moment and I felt a little twinge in my heart. Silent Night was the song I sang to my Mom in her last hours.

For the first time in three years I didn’t feel sad about Christmas Eve. The twinge I felt was more of a longing than anything. Yes, there are times I still wish I could see or talk to my Mom, yet I felt like she was with me for that brief moment while singing Silent Night.

This is something I wrote while sitting with Mother the night she went to heaven:

A Christmas Gift

 A special gift this time of year

Usually brings joy and lots of cheer

But tonight is different, it’s more like tears

My emotions are bittersweet and not the norm

For while my loved one has moved on I will mourn

I prayed for the day that she would be free

Free to laugh and talk and joke and just be

How joyous she must be right now

To be singing praises with the angels to the One on High

It’s Christmas Eve and there’s peace all around

The room is filled with a low warm light

While angels are singing throughout the night

Silent Night, Holy Night all is calm all is bright

The Christmas gift has been given…sleep in heavenly peace

 

 

‘Twas The Night Before. . .

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‘Twas the night before. . .

  • Noticing behavior changes
  • Your life began changing
  • A diagnosis
  • Your loved one’s life changed
  • Losing independence
  • Making a difficult decision
  • Becoming a Caregiver
  • Becoming Power of Attorney
  • You felt alone
  • You became the parent to your mom or dad
  • A loved one passed away
  • Your world fell apart
  • Wondering why this happened to him? Her? Me?

This describes what I thought, felt and had to contend with. Little did I know all the ups and downs I would experience as a Caregiver. Life became a roller coaster of emotions.

Where do I go? Who do I turn to? No one will understand. My situation is different. Sound familiar?

Life throws a curveball and we wonder how we’re going to deal with it. For me, it was my faith that got me through it all.

“As you persevere along the path I have prepared for you, depending on My strength to sustain you, expect to see miracles—and you will.”

“Miracles are not always visible to the naked eye, but those who live by faith can see them clearly.” (excerpted from Jesus Calling, Sarah Young

No words could have been truer. I didn’t realize this at first; as the years went by my eyes were opened wide to the fact that faith was paramount with being a caregiver. No one ever said life was going to be easy and problem free.

You might say, “Well I didn’t ask for this to happen and here I am; no experience as a caregiver. Now what?”

May I just say, we don’t ask for a lot of situations that take place in our lifetime. However, it’s important to stay grounded and strong; surround yourself with like-minded people who can not only support you emotionally, but physically as well. If you need respite for a day and someone offers, accept the offer.  Don’t feel guilty because you need a day to yourself. If you don’t take care of yourself you will end up becoming bitter and resentful toward the one(s) you love.

The list above is daunting especially if you’ve just begun the roll as a caregiver. For some caregivers the journeys are long; other people may experience just a few years. Whatever length of time you spend as a caregiver, seek out the right kind of help for your particular situation. I can’t stress that enough.

Last, and certainly not least, believe me when I say there will be so many blessings along they way. You were chosen as Caregiver for a reason. You are special!

 

Being “Joy” Filled

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When my marriage ended in 1985 I could never find the joy in the month of December. My family was no longer together to celebrate this time of the year. On top of that my children alternated between me and their father for the holidays. Not a happy time and very lonely to say the least.

I thought nothing could be worse than not having my kids with me at Christmas. Waking up to silence instead of excitement and sheer delight was more than depressing. I didn’t think I could get through anymore holidays if they were all going to be like this.

Fortunately, I had my parents to turn to. I usually spent the night with them on Christmas Eve. It was their support and love that helped see me through a difficult time in my life.

As my children got older I became more accustomed to them being away during the holidays. I still didn’t like it, I just had to accept it for what it was. After all, their dad needed to be with them as much as I did.

I learned to find the joy just by giving them a call on Christmas morning and hearing the excitment in their voices about what Santa brought them or how they were going to spend their day with the dad.

Over time I adjusted to what became the “new normal” in our family. Was it easy? Not in the least. In order to survive I had to decide what was more important, being depressed and self-absorbed or learning how to cope and make the most of my beautiful family. Eventually I was having joy filled moments back in my life.

As a caregiver I felt much of the same way as I had after divorce; sad, lonely, lost, somewhat depressed and not knowing what to expect next or who to even turn to.

Just as my parents were my support system during those tough times I found support through other caregivers experiencing the same thing I was experiencing. We all had a common thread: mother’s living with Alzheimer’s disease and other dementias. None of us knew for sure whether we were doing the right things for our mothers. After we formed our group we shared our research and information we had discovered. We put ourselves aside for one another lifting each other up.

Putting yourself last, as a caregiver, for another caregiver might sound crazy because you’re already putting yourself last by caring for your loved one. Honestly, it was kind of a relief. I know that must sound nuts, but if you take the focus off of yourself for just a little while and turn it to help someone else in the same situation it becomes joy filled. It did for me and I honestly believe it did for the other ladies in our group too.

This is not to say that we were like the “seven lords a leaping” with joy, but it did give us a sense of joy filled with love.

December 2011 was my last joy filled time with my mother. She passed away on Christmas Eve. As much as that might sound depressing and sad it was just the opposite.

I was given the gift of being with her all the way to her final breath. The love and joy I felt at that moment seemed to erase all the stressful times I encountered over the past nineteen years of caring for her.

Knowing my mother was entering her heavenly realm with no more suffering brought me the ultimate joy filled Christmas Eve.

My prayer for all Caregivers is for you to find that joy filled moment during this most precious time of the year.

God Bless you all!

 

 

 

 

Lost and Found

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Have you ever wondered how a person with dementia uses inappropriate words in place of the proper words or they’ve never been one to curse and now they do it all the time? They also use words that don’t make sense in their sentences; sometimes it’s just garbled words altogether.

It’s not unusual for this to happen because of the way their brain is losing certain capabilities.

As Teepa Snow explains, it all has to do with right brain left brain functions.

She refers to the right side as Right Rhythm Retained and on the left side it’s Left Language Lost.

Right Rhythm Retained is where the bad words and racial slurs are stored. It’s also where music memory is stored.

Left Language Lost is losing language skills and correct words to put their thoughts into proper sentences.

As a caregiver we have to be patient in more ways than one. Learning to speak slowly so your loved one can process what you’ve just said and then being patient as they are trying to figure out how to respond. It’s not easy to sit still while they are struggling to find the words they want to relay. I was guilty of trying to “help” my mother with her words. But all that did was make her feel inadequate and resulted in her either being agitated or feeling sad. I  quickly learned to just let her do the best she could and go with it.

In the beginning stages of her dementia she was very aware of not being able to communicate. Her words would come out garbled and sometimes there were just words that she made up. That was the Left Language Lost starting to take place.

Later on as her dementia progressed I noticed very quickly the Right Rhythm Retained stage was taking over. She pretty much said whatever came to mind and it wasn’t always so pleasant or kind.

Again, I had to learn how to handle those situations and not get embarrassed because she just offended someone. You can be assured that your loved one will, at some point, become offensive to others. Just remember, they aren’t intentionally being that way; it’s the dementia.

Redirecting is always a good tool to use when your loved one is being contrary, rude or just downright hateful. Just as you would redirect a small child who is upset, you would do the same thing with a person with dementia. I’m not saying it works a hundred percent of the time, but it does help.

Keep your cool during these challenging moments. If you find you’re getting agitated or impatient, walk away for a few minutes and compose yourself. Don’t let your verbal skills drop to their level by saying something inappropriate! You know the difference, they don’t.

 

“You Need My Peace”

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This certainly doesn’t seem like a peaceful time of year. I mean everyone is frantically shopping for that perfect gift or they’re updating their house in some way to prepare for the big family gathering and trying to come up with just the right menu for the BIG feast. So many details to tend to, right?

In the life of a Caregiver there is more to think about than all those things I just mentioned.

Having a loved one in your care isn’t always a peaceful time either; the focus is much different. It could be who is going to help out this year with the caregiving? Maybe it’s no one is able to be with you because of their own personal circumstances. Then what?

I know from personal experience that the holidays were not my favorite time of the year. Working in the hospitality field you know you will work holidays simply because that’s the busiest time of the year. I had no problem with that since my family was 1200 miles away. I actually looked forward to being at work that way I wouldn’t be home alone.

After my shift, on Christmas Eve or Christmas day, I would do my best to come up with something that would be entertaining or as much fun as possible for my mother. It was a hit-or-miss situation since I never knew what kind of mood she would be in. However, the nursing staff always had a festive vibe going on. When I arrived to visit, the Christmas music might be playing or there might be some sort of game taking place. They did their very best to keep the residents engaged in some sort of activity. I always appreciated their love for all the residents.

It was hard for the staff being away from their families too, but this is what they do and it is their calling in life. I never heard complaints about having to work. They brought a peace to the residents.

I, too, had to learn that peace because caregiving isn’t a very peaceful type of occupation. That’s where my faith was so important; without faith I would not have been able to accomplish the role as a caregiver.

I have a beautiful book of devotions by Sarah Young, Jesus Calling. I always feel like Jesus is speaking to me personally when I read from that little book. Today’s devotion was about Peace. It certainly brought back memories of my time as a caregiver because there is a part in there that says:

“You need My Peace each moment to accomplish My purposes in your life.”

No words could be truer now than back then. In order to accomplish anything in this life I need that peace.

Life is a journey for all of us. It makes me wonder why is it that so many people get caught up in the frenzy of holiday hoopla?  Why can’t they find the peace and the real reason for this time of year?  

Another excerpt from today’s devotional might just answer that question.

“Sometimes you are tempted to take shortcuts, in order to reach your goal as quickly as possible. But if the shortcut requires turning your back on My peaceful Presence, you must choose the longer route.”

Let’s not take the shortcut. Choose the peace and reach out to the main caregiver or family member that could use some peace too. Don’t think “material” when you give; there are many ways to show love and that’s the best gift ever!