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!

99 Years… and Pennies from Heaven

Mom turned 99 early in the month.
  
I can’t help but think that Daddy has to be wondering when her journey here with us will be complete and she can join him.
  
I know I wonder at times what more I should be learning from her at this point.  There has to be something her presence here is meant to accomplish so I’m always thinking about her life’s twists and turns – or more appropriately now, her falls and bounces - and what I can learn from them.

A party to celebrate was planned for a week later so my husband and I went to visit her on her birthday.  I got out of the car and started walking toward the door when I saw a penny on the ground.  My immediate thought was that Daddy wanted me to give Mom a hug for her birthday on his behalf.

Call me crazy but pennies have a deep meaning for me from my childhood and Daddy has always been a part of that.  He taught me to save my pennies.  I had a little iron bank shaped like a house to put them in and every so often, Daddy would take me to the bank to put them in my savings.  In the years since his death, I can’t tell you the number of times they have appeared on the ground when something was weighing heavy on my mind.

Back in 2010, Daddy appeared to me in a dream very briefly.  He was there just long enough to say Mom couldn’t be left alone anymore.  I thought and thought about that and what we should do about it.  Shortly after, I was driving to the store and made the decision to talk to my husband about leaving my job to take care of Mom.  When I got out of my car, I didn’t take more than a few steps when I saw a huge bunch of pennies on the ground in front of me!  Okay Daddy!  I hear you!

Although he’s on my mind often, I haven’t dreamed of Daddy since that dream in 2010.  There are times when I begin to think that he’s spending all of his time watching over Mom because I go through long stretches of no pennies.  Then all of a sudden there will be a penny on the ground in front of me, calling my name.

Mom enjoyed her birthday party.  We don’t get a huge crowd for it – our family is truly huge – but those that aren’t busy with sports will usually come by.  Enough of them drop by that Mom seems to understand her family is around her.

Mom and Hurricane together again.  She sat beside her cake for a long time before reaching out her finger and getting a scoop of icing.  She must have liked it because she ate a piece and some ice cream then we looked back again and she had pulled another piece over and eaten half of it!

After the party, she said something to me that I hadn’t heard in a long time.  She asked if she was going home with me.  She seemed to want to go.  I assured her she was home but inside I was struggling.
  
As we’ve come closer to the time that we will need to help pay for her care, I’ve thought often about whether or not I could bring her back to live with me.  She’s calmer now and sleeps a lot so seems easy enough, right?

Nope.  Mom needs more physical help now such as transferring from wheelchair to toilet, or bed to wheelchair, etc.  I used to be able to do that but after hurting my back and shoulder last fall, I know I can no longer move her around.

I think God keeps reminding me that it’s not a good idea.  Just when my shoulder starts to feel good, the weather will change or I’ll make a quick movement that sets it to aching. Or I'll hear from the home that Mom was up all night.  Since Daddy hasn’t stepped in to say anything to me about it, I’m thinking he agrees she’s fine where she is.

The lessons we learn…

Many of us probably remember saying things such as, “When I’m a parent, I’m going to do things different than my parents did.”  It’s not an unusual thing for a young person to think when they are upset about being disciplined or being told no when they want to do something.

In my case, I really can’t remember feeling that way.  As a matter of fact, I raised my children the same way I was raised and as grandparents, my mom and dad treated their grandchildren the same way they treated their children.  I really appreciated that when they were taking care of my children when I was working.

As the years went by, I continued to learn from my parents. I learned about loving and caring – something that seems so easy but really must be learned because as children we are very self-centered. I learned about handling money, making decisions, raising and disciplining children, having a good work ethic and so much more. I made mistakes, of course, and continue to but I also was taught to learn from my mistakes – life lessons, I like to call them.

Mom is soon to be 99 years old and she is still teaching me. No, she isn’t who she used to be. I can’t go to her and ask her how to make a pattern fit me properly or how to knit or crochet. That information is all lost now. There are still lessons to be learned though.

I watched indirectly as Daddy went down the path of Alzheimer’s. I’ve been watching Mom journey through dementia. I’ve also watched from afar as my former mother-in-law has dealt, for over 14 years, with the aftermath of a traumatic bleed in her brain. I’ve watched as my husband’s parents have aged.

When Daddy died both he and Mom were 71 years old and Mom was relieved he was somewhere better and no longer experiencing the Alzheimer’s. Although she was ready to join him whenever God was ready, she continued her life and kept busy for many years before dementia set in. Her journey continues with no end in sight but thankfully, she has made it to the point where she is content and happy to just sit and snooze or watch what is happening around her and sometimes comment on it. She still laughs quite a bit.

My former mother-in-law has a different story because at the age of 48, she lost the love of her life, my father-in-law, when he was just 51. The loss was totally unexpected and she still had three of their ten children at home. She managed to continue but once the children were grown, was ready for God to take her. Fast forward to a fateful day that might have been her last but for a friend taking her to the hospital. Suddenly a creative advertising and marketing person had no words with which to communicate and didn’t recognize her own family. It took years to overcome some of it but not all came back and she has been mostly bedridden for over 10 years. Each morning she shakes her fist at the crucifix because she doesn’t know why God is keeping her here.

My husband’s parents also have a different story. My mother-in-law worked for a surgeon for many years and it was a very good thing! She made sure I was taken care of when, shortly after marrying her son, I suffered three consecutive bouts of flu and my immune system was shot. If it wasn’t for her, my oldest daughter’s emergency appendectomy may have turned into a nightmare because it was a Sunday evening and the ER staff didn’t want to call in a surgical team. Mom (my mother-in-law) called her boss, who happened to be the Chief of Surgery, and within a half hour, he was at the hospital operating on our daughter. We have more stories like those and we certainly appreciate her role in them!

Maybe because she spent so many years in the medical field, Mom and Dad (my in-laws that is), in comparison to my own mom or my former mother-in-law, are very dependent upon doctors. Dad has dealt with cancer and heart issues over the years and Mom has had lymphedema for longer than I have known her. As they have aged, the issues have compounded and there have been times when we weren’t sure what the outcome would be.

So, as I watch how four very different people in my life are handling the winter of their lives, I am still learning. I am formulating opinions about how I want my care handled when and if I reach that stage and how I feel about the end of life.

For now, I’m content to leave it all in God’s hands. I’m sure the plan is in place – we just don’t know what it is.

The little surprises…

I’ve been sick.  For over two weeks now I’ve been stuck at home.  It was nothing horrible like the flu but a sinus infection that decided to take my asthma out to play.  That means no visits to Mom for that time also.

This morning I was finally able to visit.  Mom was sleeping soundly in her wheelchair when I arrived, holding her baby doll on her lap.  I gently checked her over, inspecting her hands, her ankles, and rubbing her back so that she would slowly wake up.

When she awoke, she looked at me with that little look that says hello, whoever you are.  She asked me about the baby seemingly thinking I was there to see it.  When I let her know I was there to see her, she shrugged and started telling me about the baby.

She started removing the baby doll’s pajamas so I got out some clothes and helped her put the clothes on the baby.  As we worked, I talked a bit and called her Mom.  Her response?  “Well, I don’t know about that.”  :)

Our visit continued with Mom dozing off and on.  At one point she awoke and I took the opportunity to show her the pictures that I always go through of Grandpa and Grandma and so on.  She knew them right away as she quite often does but today she surprised me!  When I brought up the picture of her aunts, she immediately pointed to each one and said, “That’s Aunt Sattie and Aunt Emma and that's me.”  Wow!  That hasn’t happened in a very long time!

I continued through the pictures and she pointed here and there at herself as a small child.  I couldn’t tell if she recognized herself as a teenager or in her wedding picture.  When I got to the last, the one of our family when I was little, I pointed and said the name of each family member and she just smiled and nodded.  I couldn’t tell if it was registering or not.

A short while later it was time to take her into lunch.  Once there, she was trying to look back at me to see who had wheeled her in so I got down where she could see me and she smiled and said, “Oh, you’re mine.”

The mom I knew for so much of my life has been gone a long time and I miss her terribly but it’s those brief moments and little surprises that grab my heart.

27 years ago a journey ended…

It was 27 years ago today that Mom’s journey with Daddy, their life together, ended.  The “till death do us part” became all too real.  They had lived through so many things together.  Their teen years with school and church activities, their marriage and moving away from family for Daddy’s job, the separation of World War II, settling back home again to raise their five children on a small farm and so much more.

The majority of their life together held much of the “in health” portion of their marriage vows.  There was very little of the “in sickness” part.  Mom had an ovarian tumor that, once removed, led to our family of five children, but otherwise there were just little backaches here and allergies there.  Daddy never missed work other than a short fight with an unfriendly kidney stone.  Sad to say but I think I brought more doctor visits into their lives with my once a year bouts of bronchitis than they ever had to deal with themselves.

That all changed when Alzheimer’s slowly drew them deep into the “in sickness” part.  When Daddy first retired, he was forgetting things but he was still himself.  His quiet, deep love for his God, his family, his friends and his life was still evident. 

They took time to travel – helping move my little family to Montana and get us settled, visiting the next year with my sister and her children, moving my little family back home, camping their way through Canada, and flying to England for the birth of a granddaughter. 

Being at home during that time meant taking care of grandchildren.  Most days they had at least six or eight and sometimes all of them.  I know they had my two and my sister’s four all the time.  There was none of the “spoiling” going on!  I went to work knowing that my children would have the same upbringing I did.  They played all day on the farm but had to behave properly.  They were disciplined but definitely loved.

Five of the six grandchildren that spent the most time with Mom and Daddy.  My two on each end and three of my sister's in the middle.

As time went on, the grandchildren grew and went off to school and no longer needed Grandma and Grandpa on a daily basis.  Daddy’s Alzheimer’s progressed but Mom, learning as she went, dealt with the changes.  Nine years after he retired the life changing moment came.  In the time it took to give Daddy a sedative he went from a physically healthy 69 year old who could still run and jump fences to a man who could no longer walk.

Mom had seen Daddy through so much of the decline but I think God knew that Mom would not be able, physically, to handle the next stages if Daddy’s mobility continued.  So, in that brief moment, He made sure that Mom would be able to see Daddy through the remainder of their lives together.

Daddy went into the nursing home and Mom was with him every day from breakfast to dinner for two years.  She saw that he was fed and cared for and, even when he didn’t know her, her love for him continued.  She truly exemplified the meaning of “in sickness and in health” and “till death do us part”.

Mom has been 27 years without Daddy now.  As her journey through dementia continues, the memory of Daddy is fading.  There are few days now when Mom recognizes his picture.  Despite that, I have full faith that when God is ready to take Mom home, Daddy will be waiting for her and there will be much singing in heaven for their reunion.