It sneaks up on you…

It’s that day that comes around once a year. Every year you celebrate it in some way.

When you’re little, you make a card and you’re so proud to share it. You get into school and you write a little story that again you’re proud to share.

As you get older there are more cards – possibly handmade or maybe store bought as time goes by.

Even if you move to Montana as I did, it’s one of those very special days when you make that long distance phone call that you know will add to your phone bill. It’s a short call but it means so much on both ends of that call.

Back in town again, it becomes cards and visits, maybe even a weekend visit to really enjoy some quality time together.

As the end draws near, the visits may be more one-sided as you watch them doze in a chair.

Through all those years – and dreadfully missed when you live far away – it’s the hugs that are the best. That sinking into the arms of the one who has held you close from the day you were born. The one whose heartbeat you instinctively recognize from those months in the womb.

Then suddenly, it sneaks up on you. Mother’s Day. That day that you have celebrated every year in one way or another because that person has been there for you from the day you first met.

But that person is gone. That person can’t give you that physical hug any more. That hug that you loved but didn’t fully realize how much you loved until you could no longer have one.

I’ll live with just the memory of those hugs now and all of the memories stored since that day I first met my mom.

Happy Mother’s Day Mom…

Dancing in Heaven…

Today, on what would have been my daddy’s 100th birthday, I find myself contemplating life and death. Daddy’s life was short compared to Mom’s. He died at the age of 71 years, 10 months and 1 day while Mom lived to be 99 years, 7 months and 10 days – a difference of over 27 years and 9 months. 

As I think about it, I ask myself, “Was Daddy’s life any less than Mom’s just because of time? Was Mom’s more important to me because she was here longer? Was the impact of either of their lives on me any less because of the way they passed?”

The answer to all three questions is no. It is my belief that we each come to this earth for a purpose. We may not remember that purpose while we are here but it is our destiny to fulfill it. We may not always listen to God’s guidance so we may cause it to take longer or others may exercise their free will and that may have an impact on timing of our purpose. It may take us years to complete or it may only take days, even moments. 

The loss of a child has a huge impact on loving parents. It doesn’t matter if that child is lost through miscarriage before it is even born, lives to become a parent themselves, or any time in between. The loss to the parents is still heart wrenching and the pain can seem unbearable.

The loss of a parent can also seem unbearable. I was blessed to have my parents for so long but I can’t help but think of the children that live through the loss of a mom or dad at a time when it seems impossible to go on without them. Twenty-eight years after Daddy died and now going on four months since Mom died, I still break down in tears at times, wishing they were here to talk to or get advice from when I need it and I am a fully grown adult with children and grandchildren of my own. If I struggle, how can a child understand?

I cannot speak from experience but can only imagine the devastation felt by those who realize their time here with their family is coming to an end. How do they say what they want to say? How do they reconcile themselves and their family to what is coming?

There are no magic words to be said to take away the pain of those moving on and those then left behind but I will offer one that sustains me: Faith. I have faith that we are here for a purpose, faith that when we pass we will have fulfilled that purpose and faith that once we, or our loved ones, move on, it is to a better, happier place where we are with God.

About a month ago, in the midst of a dream, Mom briefly appeared to me. She came in the door with a shining smile on her face, took my face in her hands and kissed me. She turned and left. It was only an instant in the midst of a very strange dream about other things but she came through and, I believe, showed me she was happy.

So today, on Daddy’s birthday, I see them dancing in heaven!

This is the outfit Mom wore in my dream and her smile was more radiant than this!

What I didn’t say…

Last night we had a beautiful memorial service for Mom. Although I planned it, it was beautiful because of those that executed it. 

My daughter, Jessie, spent endless hours going through photos and music to create a video of snapshots of Mom’s life set to beautiful and meaningful songs. The video played just after the pastor’s wonderful welcome. As it played, it brought tears to our eyes as we walked through memories Mom had shared of when she was young and then into the memories of our lives with her.

I was supposed to follow the video with a reading of the 23rd Psalm but had my daughter, Brandy, step in for me. The 23rd Psalm has been one of my favorites since I was little but I had been fighting sinusitis all week and was running on adrenaline with a less than trustworthy voice. Although the request was last minute and the reading, while known, was less familiar to her, and she had to follow that beautiful video, Brandy didn’t hesitate. As Jessie before her, she tugged my heartstrings.

The first of three songs was “Faith of Our Fathers”; a hymn that Mom had told me years ago was one of her favorites. It’s one of those wonderful old hymns I was raised on. At Daddy’s memorial service we had sung “How Great Thou Art” because it was his favorite so I knew I couldn’t do Mom’s service without it. Leading it was my youngest daughter, Heather. Our crazy warm December also had her fighting a bug but her younger, trained voice was able to carry us through that song and warm our hearts with two solos later in the service, bringing tears to my eyes, her father’s and others in the audience.

Our next substitution stepped up to do a reading, John 14:1-7. I had penned my brother into the program but he preferred to avoid the public reading. No worries! Although she usually wants more time to prepare when she reads at her church, his wife, my sister-in-law, took the podium with just one practice run before the service and read the passage beautifully.

The pastor gave a message of hope that perfectly tied into Mom’s life, speaking of how Mom used her hands to care for, feed and clothe her family and tying that into the life of Jesus using stories such as when he calmed the sea.

My oldest brother stepped up next to deliver the eulogy, calling me his ghostwriter. As I had done for Daddy’s service, I wrote Mom’s story for Bob to read. Although my words, I knew he would make it his own and he did, bringing laughter here and there, adding little comments that rounded out my story. He acknowledged there were details about Mom’s childhood that he didn’t know and learned for the first time when he read through the eulogy.

Next was the opportunity for others to share stories. At Daddy’s service various people from his past had come to the front to speak but when one lives 99 years, there are fewer people around who have lived long enough to tell stories.

No one jumped up to share so my nephew, another substitution – this time for his father – stepped up to lead us through the Lord’s Prayer. Again, although asked at the last minute, this man that as a child wouldn’t speak to anyone but two cousins spoke out loud and clear.

It wasn’t until later that my grandson said he was just getting up to speak but the moment was lost. I would love to hear what he was going to say and maybe someday he will tell me.

As for me, although ideas had popped into my head during the week, I hadn’t taken time for any of them to solidify. It was a rough week in which I made several unfortunate mistakes and learned of others around me who were also dealing with the aftermath of mistakes. Given that, I would like to have told this story:

The other kids were gone from home and Mom and I would watch Mike Douglas and Phil Donahue in the afternoons. We discussed the many and varied guests and topics such as Gypsy Rose Lee (a famous stripper) and Madalyn Murray O’Hair (an atheist) or civil rights and abortion. I certainly wasn’t a worldly teenager (that’s an oxymoron in itself) and was, in fact, very naïve but I think I had the best mom in the world because I could express my opinions and she would discuss them with me but never told me what to think.

Along with that openness, Mom would always point out mistakes she made when making a garment or a quilt or some other item. If she found a mistake while making it, she would correct it but when found at the end, she would say that it just showed it was handmade. I always felt it was her way of saying that we try our best but we will make mistakes because we are human. Only God is perfect and yet he loves us in spite of our mistakes.

Upon hearing about my week, Brandy reminded me of the things I taught her: “This too shall pass. What doesn’t kill us makes us stronger. Don’t let a mistake define you.”

I always told my children mistakes are just life lessons. My mom taught me that.

A fitting end…

The Lord took Mom home today. At long last she is at peace and happy with Daddy in Heaven.

I knew at my visit on Monday that she was declining but as we learned with Daddy, you can’t be sure when it will happen. My sister visited that afternoon and also knew that the time was coming. We both saw that Mom was sleeping more – in fact, my sister found her in bed one afternoon. Mom had been a bit distressed so her aide thought she would be more comfortable in bed. As the week went on, she continued to decline.

The end finally arrived around noon today. It was a very fitting end.

Seventy-two years ago, my oldest brother was born while my Daddy was on board ship in WWII. Mom and Bobby spent the first couple years together, just the two of them, in northern Ohio where they had been living when Daddy left for the war. My grandparents lived in Cincinnati but Mom refused to move back because she and Daddy had made a home and he had a job to return to after the war.

After the war, they did move back some time after my sister was born and began their life on the farm where they eventually added my two brothers and me to the family.

We can move quickly through the wonderful years that came and went until 1986 when Daddy went into the nursing home and later that year, Mom moved in with my brother, Bob and his family. For the next 24 years Mom lived with her firstborn again, through the marriage of his children, the birth of his grandchildren and the passing of his wife, her daughter-in-law, and the Mom’s eventual descent into dementia.

On May 7, 2010 Mom came to live with me and you have shared my journey with her through my blog. You have listened as I talked about the decision in May 2011 to move her into a facility and all the things I have learned in these last five years.

It all came to an end today in a most fitting way. I was not there when she passed but I am thankful because I believe Mom’s life could not have ended more appropriately. My brother Bob was there with his family and she drew her last breath in his arms. 

What could be more perfect than Mom being with him at the moment he drew his first breath and Bob being with her at the moment she drew her last.

This was taken moments before she passed. She was awake but obviously ready for the end.

I thank all of you who have listened to my story and I hope, in some small way, the lessons I have learned have been helpful to you.

For Mom or for Me?

Lately Mom has been sleeping even more and wanting to eat even less. Those changes are a natural part of moving toward the end of a life well-lived.

My sweet Mom is sleeping on the couch. If they allowed her to nap in bed, she might wake up, get up and fall.
As she sleeps more, they will let her be comfortable in bed.

We watched as Mom took care of Daddy through this stage. She was with him every day from breakfast to dinner, feeding him all three meals because he was not able to do it himself. Although deep in the pit of Alzheimer’s the day came when Daddy firmly closed his lips and wouldn’t allow Mom to give him a bite. As it continued, Mom became concerned and allowed them to put in a feeding tube. He eventually began eating a bit again and the tube was removed but that experience told Mom that she would never make him do something again. It was his choice not to eat and she had taken that choice away.

The next time Daddy closed his mouth and refused to eat, Mom accepted his decision. Although she possibly didn’t realize it at the time, his refusal was a natural part of the end of life process. You might think “process??” because I am talking about a living being but the body has its own processes.

The National Institute of Health tells us “People at the end of life sometimes suffer from nausea, vomiting, constipation, and loss of appetite.” They explain further:

“Losing one’s appetite is a common and normal part of dying -- eating near the end of life may actually cause more discomfort than not eating. A conscious decision to give up food and/or water can be part of a person’s acceptance that death is near.

Providing liquids or feedings via tubes in veins or in the stomach does not relieve hunger or thirst, so this is not recommended near the end of life. These types of treatments can also cause discomfort rather than helping the person feel better.”

As the body begins to slow and shut down its normal functions, we can actually cause our loved one pain by insisting that they eat. They naturally have no desire to eat because their body is telling them it is shutting down their digestive system.

It’s hard to understand that our loved one isn’t “starving to death”.  Dignityhealth.org tells us “Remember, the person is not dying because she is not eating. She has stopped eating because she is dying. Starving is an emotionally loaded word that usually refers to someone who wants food and would eat it if he had some. But a person who has stopped eating and drinking has actually simply begun the natural process of dying. These persons rarely feel hungry and sometimes even the smell or thought of food is nauseating. “

So, as Mom is sleeping more and more and eating less and less, it is important to ask ourselves, “Am I doing this for Mom or am I doing this for me?”

Let’s let Mom decide.

Roles change again…

I haven’t written in awhile.  Mom has neither improved nor declined but continues to be content sitting each day holding her baby.  While that is true, each visit can be vastly different from the last.

Today I arrived after lunch to find her sitting in the rocking chair, not yet holding a baby.  She looked up at me and smiled a big smile and said hello.  We hugged – and she was actively hugging me – for a good minute and when I finally leaned back, she said, “I love you.”  I melted. 

We had a great visit although she was snoozing off and on.  She would talk a bit and then drift off but come back a minute or two later.  Food coma I would say.  At one point she noticed a CD player sitting on the floor beside her chair and started investigating it.  I thought that would be a good time to give her a baby to distract her and as I handed her the baby, she settled it in her arms.

As I drove away after our visit, I did something I do almost every time I visit.  I thanked God for giving me such a wonderful mom and daddy.  As usually happens too, I began to cry.  It’s not a sad cry even though Mom today is not the mom she has been all my life.  It’s a happy cry that I have been so blessed.  I can only hope that someday my children feel about me as I feel about my mom.

While Mom remains the same, other things have changed.  My brother, the elder of us five, has carefully watched Mom’s finances over the years.  Last year, he alerted us that her savings would soon run out and we would have to supplement Mom’s income to pay for her care.  

We could possibly reduce the cost of her care by moving her to a Medicaid facility.  I haven’t investigated it but I think she would probably qualify but moving her would be traumatic and take her away from the staff members at her ALF who care for her every day.  She is so happy and content that we made the decision to keep her where she is.

Time passed and Mom’s last bit of stocks lasted longer than my brother expected.  We actually joked that we would be very happy if Mom spent all of her money before she decided to join Daddy in heaven. 

Earlier this summer, the funds finally ran out.  Mom still has her pension – I may have mentioned at some point that she is an annuity nightmare.  Daddy set up his pension to go to Mom if he passed first.  He did, but I know the annuity companies don’t expect anyone to live to 95, let alone 99 heading to 100!

The pension always more than covered her expenses while she was living with my brother and when she moved in with me.  The savings she had accumulated over the years helped supplement that income when we moved her into the assisted living facility.  With the savings gone, it is time for the tables to turn and now the children will support the parent.

My three brothers and I split the cost over and above what Mom’s pension covers.  My sister took over the purchasing of the incidentals such as Depends, wipes, gloves, shampoo, etc.  There were no arguments or complaints, we just figured it out and arranged getting the payments to my brother so he could pay the bill.  Again, I am so blessed to have a wonderful family!

Helping to pay for Mom’s care has brought another change to my life.  It’s like having another car payment and our budget didn’t have room for that.  The other option would have been to bring Mom home to live with us again but that is no longer feasible.  Although I am in great health, I know that my back – I already have sciatica – would give out if I had to transfer her multiple times a day.  So, I have gone back to work to make the money needed to pay my part.  

Sometimes, especially when I’m working, I wish Mom was in a facility closer to me so I could see her every day but placing her near the rest of my family was the best decision.  My sister and niece are there often and many other members of the family will stop by here and there.  They wouldn’t be able to do that if I had placed her near me.  So, I will be happy to work to help pay for her care and enjoy all the visits I can squeeze in.

Still Alice… Still Mom

I watched the movie Still Alice yesterday.  I read the book a few years ago and while it wasn’t based on a true story, Lisa Genova’s research and resulting story is an excellent first person account of life with Alzheimer’s.  A movie can never catch the full flavor of a book but the movie did provide insight into the mind of a loved one with Alzheimer’s. 

The movie also touched very lightly on the family dynamic – something I’ve learned from firsthand experience in not only my own but others close to me as well.  Seeing how others are handling it, I consider myself a very blessed person to have such wonderful siblings!

Some people seem to think that Alzheimer’s, or any form of dementia, appears overnight.  They say, “It can’t be dementia because she knows who we are” or “He doesn’t have Alzheimer’s because he can tell you what he did today”. 

That’s not the case, however.  Dementia builds up little by little and differently in different people.  I’ve told about Mom’s losses over time such as finding the word she wants to say, forgetting how to sew, and more.  For Daddy, it was forgetting names and missing meetings.  In either case it was nothing noticeable at first and developed over time.

In the movie, Alice was a world renowned professor of linguistics – a lover of words – and the loss of her words was devastating to her.  It was only the beginning of what she would lose and, while the book played it out more completely, the movie did manage to show how the stages progressed.

As you may imagine, the slow progression of the disease may cause family members to disagree about what’s happening with their loved one.  I find that to be a key topic on the support forums and at our local Alzheimer’s support group.  The gulf between the family members can widen and seem impossible to close.

Quite often it is the caregiver complaining that others in the family don’t help or don’t get involved.  The caregiver assumes that no one else cares about them or the loved one and while that may sometimes be the case, I think quite often there is more to the story.

There are also times when a family member is upset that the caregiver won’t discuss the situation with an open mind and lashes out at them so they back away. Again, there may be more to the story.

Neither situation helps anyone involved.  There is probably common middle ground but getting there may be difficult to navigate when the caregiver is in the trenches and the others feel outside and unheard. 

As I’ve said before, my family is great.  I communicate through this blog and when I need to communicate quickly or in more detail, I send an email to them all.  They were supportive when Mom was living with us and continue to be since she has been living at the ALF.  My sister would spend weekends with her when she lived here so that we could get some time away and now she visits Mom several nights a week, helping Mom eat her dinner and keeping another eye on her care. 

Do my brothers visit like my sister and I?  No, but my oldest brother has overall POA and handles all of Mom’s finances and I know all of them will be there if we need them and because of that, I feel comfortable in my role overseeing Mom’s care.  Although I make all of the day to day decisions for her care, I’m not alone in any decision that I want or need help on.  I always know my sister and my brothers are there.

Mom was our example to follow.  She did it well.  She did everything in Daddy’s best interest and accepted it when we had to bring something to her attention.  For example, she wasn’t happy when I told her Daddy couldn’t drive anymore but she had no experience driving so she accepted my opinion and Daddy stopped driving.

I wish everyone’s family would be like mine.  That isn’t the case but I do pray that others will try to find common ground.

She's telling me a great story!