Category: our story of alzheimer’s

my grampa (and our family) is facing alzheimer’s, and all that is involved with this disease. here i will process the changes in his/our life, and share what we’ve learned about the disease. this is solely from my perspective and i may share raw emotions at times… afterall, he is dying a slow death and that hurts us every day.

Reminiscing…

Lori Tisdale2 Comments

This week marks the 1 year anniversary of Grampa Marv succumbing to life as we know it…

His mind and body fought hard against Alzheimer’s for many years.  And in the end, when we sat around his bed… telling the fun stories, thanking him for his legacy, enjoying the love of laughter that he instilled in us… he took his last breath. 

And we miss him dearly. 

The pain of missing him is a little less each week… but we will continue to miss him in those random moments when we catch ourselves using the tell-tale phrases he coined in our family… we know what they are and repeat them often.

My favorite memory is eating dessert with him as a kid… and that child-like twinkle would light up his eyes when he ran out of ice cream before he ran out of cake (Gramma always had dessert in the house)… and he would say “Well, it didn’t come out even.”  He would shuffle toward the freezer and come back with a fresh stash of ice cream.  And you could bet that in a few minutes he would again say “Hmm… it didn’t come out even again.”  (This time he ran out of cake before running out of ice cream.)  So he’d go back for more… and the silliness would continue.

In his last months together I reminisced with him about Gramma Ruth.  His memory of her was still so strong and I could tell that he missed her dearly.  She lived in on his mis-firing brain just as if she was still in the room.

March 9th is fast approaching… thankfully we will be together with a good portion of the family.  I’m looking forward to having family close.  His birthday and Christmas were rather difficult.  I can only imagine what the first March 9th will be like…

Thankfully we will be together to reminisce…

 

 

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Oct 1… the first birthday without him…

Lori Tisdale4 Comments

Oct 1 – It’s a bittersweet day

It would have been his 85th birthday…

Instead I’m reminiscing on his 84th birthday…

We will get together with family today

those who were together with him on his last day

Oct 1 won’t be the same

But getting together today will give us another chance to heal

We will be together and do what we do

Laugh

Reminisce, eat… be…

and heal…

It’s bittersweet… family is the sweet part!

ready to volunteer…

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Alzheimer’s has such a special place in my heart due to how it has affected our family… what we’ve learned through that process, etc…

So, it’s time.

It’s time to volunteer and get involved and provide assistance to individuals and families and care facilities who are struggling with the onset of this disease.

I’m in no way a professional in the medical field.  I’m not exactly sure if I can even help that much, physically… but standing next to them, sitting next to them, listening to them and commiserating with them?

I can do that.
So, where will I land?  I don’t know, yet.
But I’ll be sure to let you know when I do…

cleaning out the house…

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It’s been 4 months… and we’re finally cleaning up his house.
We all came together … in our work clothes.  And painted, swept, cleaned out, tossed junk, had dinner together, laughed…
We went through cabinets, closets, the garage, more cabinets… we laughed at the number of broken eye glasses, pocket knives, and pocket-sized magnifying glasses that were stashed in dresser drawers, kitchen cabinets, boxes, etc.

How many pocket sized magnifying glasses does one Granpa need?!  Quite entertaining!
We found stashes of things that were important to him over the years:  awards he won at work, commemorative items he saved from work, foreign coins from his travels, newspaper clippings, programs from friends’ funerals and weddings, the video tape of Gramma’s funeral…

The best part of it all?  We split up the franciscan apple china …

These place settings were on my Gramma’s dining table at every holiday dinner.  One of our most valued inherited pieces… and now we all have a few pieces of it.  We split up the place settings, vegetable/fruit bowls, gravy boats, dessert platters, etc.

And when we left the house we didn’t even say goodbye… it didn’t feel right.  We just left and didn’t look back.

We were too sad… he’s gone.  The house didn’t look like him anymore.  Our memories of him have been dispersed and are now perched on shelves and counters in our own homes.  The memories are there… but he isn’t.

The house is for sale… he’s gone.

reminiscing…

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As part of my healing process I’ve been reminiscing…  I’ve been keeping myself busy by scanning old family photos and slides.  Some of them date back to the late 1800’s… and they’ve been hidden in an old trunk.  I’ve never seen most of these pics.  So this was like a treasure chest!

The family photo storage bin has been endless… I believe we have scanned well over 5000+ images!!!

As a lover of both history and photography I find it so important to preserve this history.  A big priority has been to make sure all of the family members get copies of these digital files.  At some point in the future I hope to start an ancestry.com account soon to link up our family history with distant relatives.
This process has taken months. Endless hours have been spent on this project. Scanning.  Digitally re-coloring, adjusting tone, cropping.  Renaming files.  Burning discs for family.  Backing up files on disc.  Phew… my computer and fingertips are worn out!
But it’s a process I wouldn’t trade for the world.  Can I put a dollar amount on the amount of time I’ve spent on this?  No.
The best part of it all?  Finding some gems, in the form of photos, of my grandparents in their dating days… priceless.  Simply priceless!

my life is quieter these days…

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I no longer carry my phone w/ me everywhere… expecting THE phone call at any moment.

I no longer wake in the middle of the night and look at my phone … to see if I missed THE phone call.

I no longer jump to answer the phone when it rings… thinking it’s THE phone call.

I no longer drive 30 miles south a few times a week… and no longer get to have Saturday morning breakfast with my Grampa.

I no longer have that extra quiet time in the car… to process the daily grieving and think through the family issues related to Grampa’s end of life.

I no longer spend extra money on gas… and yet in a heartbeat I’d spend it all over again for one more trip south to see my Grampa.

Having family around more often over the past few months has been cathartic.

Even in the hard times we were laughing… that’s just how we roll.

The laughter with the family will resume… once we come together again to spend time with each other.
Until then… it’s quiet these days.

So in the absence of the phone ringing (and long conversations with family) and the long drives and the enjoyable & necessary family time… I now catch up on “reading people and meeting books”.

These were just a few of the things on my ‘to do (eventually)’ list… and now my time has been freed up a bit so that I can resume checking off the list. This week alone I have taken 3 naps, finished 3 books I was in the middle of and have actually made dinner every night…

Other items on my ‘to do’ list: scan in old family slides, host a girls’-only dinner in the backyard, enjoy my Saturday mornings at home (my favorite time to be at home – if you know me well you know I protect this time as much as possible), etc.

Life resumes… but now without Grampa.

And while I miss him dearly everyday I’m kind of jealous that he has been reunited with Gramma. We love you both and know that you have smiles on your faces once again…

his last words to me…

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His last words to me.

“I love you too…”

It was his muffled response to my “I love you, Grampa!”  I kissed his temple and brushed his hair back over his forehead.  I was saying goodbye for the day, a short visit.  But an important visit.

The next day his body fell into a deep sleep, his body fighting for the next 72 hours.  All the effort his body could give … it was focusing on his heart beat and his breathing.  He was with us for a few more days… but he never awoke again.

Sitting next to him, off and on for several days, singing “Amazing Grace”… praying for him… hoping his last breath would be peaceful… sharing fond memories… laughing to him as I recalled funny stories… hoping my meager efforts could make his last few days as comfortable as possible.

Family came and went… we laughed, we cried, we loved him. 

We were ready to say our “goodbye” and longed for him to be in a better place.
And in his last minutes, when his breating was long and labored, it was still peaceful.  He took a breath… and then there wasn’t another breath.
We gathered ’round and cried a bit.  We said “Thank you, Jesus!”  And eventually we resumed laughing.  (Some might think this is inappropriate… but that’s how we handle this thing we call “life”.) 
More than anything… we are happy he is in a better place.

he has stopped eating…

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It started roughly 3 weeks ago… leading up to that we realized his eating abilities had slowed down.  It would take a while for him to chew his few bites of food.  He would eat about half of his meal… and then he would grab for his napkin.  In his world, that is the international sign for “It’s time for dessert”.

Then something switched in his body.  About 3 weeks his eating nearly stopped. While he would eat a few bites at meals – most of it would come back out.  Or he would “pocket” the food – hold it in his cheek.  Sometimes he would swallow it – sometimes he wouldn’t.  His caregivers took the time to explain that at that point it’s dangerous to put more food in his mouth or give him liquids.  It’s obviously a choking hazard.  So the struggle ensued to encourage him to eat, but he can’t be forced.

He is still drinking liquids (but only his favorites) – he sure LOVES his chocolate nutritional drink, holding on to it for dear life.  However, he can’t be fooled when we hand him a vanilla drink – he makes a sour face and pushes it away.

Now, 3 weeks later…

He won’t eat his favorite mashed potatoes and gravy…
He won’t eat meat (his mother is turning over in her grave!)…
He won’t …

He just won’t…

Regardless, he WILL eat vanilla ice cream.  The whole bowl of it…

As his family knows he has always enjoyed his ice cream. 
(insert childhood memory here)
On any given night… Grampa would sit down with his dessert:  a bowl of ice cream and cake/brownies/cookies.  (Back in the day, Gramma would make a new dessert almost every night.)   But somehow it would never “COME OUT EVEN”.  He would either run out of cake and still have ice cream left, or the other way around. 

He would rise from his favorite chair to go back to the kitchen (and if you looked closely you could see a grin cross his mouth)… he needed either more ice cream or more cake (or more of both).  And in true Grampa form, sometimes on the second round it wouldn’t “come out even” again… and so we’d get to see another one of those cute grins.
And back to today… he may only be days to weeks away from closing up the final chapter of his life. 

So it is appropriate:  in his last days, the only thing he will eat is ICE CREAM.
It’s a bittersweet realization… but appropriate.

Answers to prayer…

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We pray for his safety and his health and his peacefulness…

And in the end, God’s timing is always perfect.

Our family couldn’t have orchestrated any better timing to call a meeting … it was clear to needed to sit down to talk through his physical/health needs and plans for future inevitabilities.  The medical social worker knew it was time to call that … but we think it was God’s doing.

The bed sores on his feet have worsened.  His mental state is declining.  His physical abilities are diminishing.  He needs an elevated level of care… he needs a knowledge base that we don’t have.

The timing on all of this was perfect… our family couldn’t battle this one out on our own any longer.  We are happy that the medical professionals, who have walked this path before, are coming along side us to be the caregivers… for our entire family.  We are sad to see him decline.  But we are relieved to have help.

And I believe we are also ready to give him one more kiss and tell him one more time “I love you”… and to wait for him to turn, look at us and utter “I love you, too.”

One person, even two people cannot take care of an Alzheimer’s patient on their own.  It takes a team, a whole team of people to support and encourage each other, to help with ordering medical supplies, dealing with insurance approvals, tending to the emotional needs of the patient and the family members, to reminisce with each other over this long loss of life.

A note on Alzheimer’s…
For some people it could start and end within a year.
For other families it could take over a decade to watch this decline.
There is simply no time line for this disease to break down the body and the brain.
So we hold on to each day, each moment, each memory as if it is our last.  Because you never know if it will be…

And somehow, God’s timing is still perfect.  He is preparing the hearts of our family members, getting our hearts ready to say ‘goodbye’ and preparing for a future without our loved one.

God knows… He always knows the perfect timing.

Thanksgiving and Christmas… and God’s timing…

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I got to see Gramps shortly before Thanksgiving… we had breakfast together again.  I love my times with him in the morning.  He seems more alert and talkative.  Most of the time he isn’t making any meaningful conversation – but I love that he feels content in talking, without judgment or ridicule.  THAT’s what it’s about!

So we talk… he talks, I ask follow-up questions.  Most of the time he shows emotion: surprise, sadness, concern.  I wish I knew what he was trying to say.

Thanksgiving
On the Saturday morning before Thanksgiving we talked about Gramma.  She passed away November 25, 1997.  I think a lot about Gramma the week of Thanksgiving.  So we talked about her a little at breakfast.  He did more of the listening… I did more of the talking.

I told him I missed her.  He simply looked at me with wide eyes.  I told him it was ok to talk about her… she was a good wife, mother, friend and cook.  He just kept looking at me.  I called her by name…

I wondered what he was thinking… I said I missed her more this year than ever before.  He just looked at me.   He never spoke her name or said anything about her.

Then I moved to a more light-hearted conversation.  I told him it was Thanksgiving in a few days.  His eyes got even bigger.  I reminded him that it was nearly time for turkey and mashed potatoes and gravy and yams.  He got excited… he took a deep breath, turned and looked at me… and said “YIIIIPPEE!” with a raised voice!  And laughed… we had a good laugh together.  The caregivers turned and looked at us, smiling.  It was a moment and level of emotion I hadn’t seen in a long time… I relished the moment with my Grampa.

Some of our family saw Gramps again a day or two after Thanksgiving… we did family pictures together at his home.  He had just woken from an afternoon nap and was somewhat alert, and talkative during the pictures.  But I think the sheer number of people there was a bit overwhelming for him.  In fact, I’m sure it was confusing… we try not to overwhelm him too much.  We would prefer he be happy and content and calm.  We would prefer to see him alert and talkative and present… and when he’s feeling pressure I think he clams up.  So we limit our large family visits… for his benefit.
Christmas
I saw Gramps again the morning after Christmas.   And I wonder if this is our last Christmas with him.  What a bittersweet visit… I cried all the way home.

His home was still decorated… with “icicles” hanging from the ceiling, a Christmas tree in the corner and a Hanukkah display on top of the piano.  There was a board displaying the holiday celebration they had earlier in the month… with Hawaiian dancers and all.

He seemed extra “out of it” this morning.  He was hallucinating a bit:  waving to someone in the corner, talking to someone sitting across the table from him, etc.  I was there… but I wasn’t there in his world.  In his world he saw a co-worker from 40+ years ago walk into the room.  In his world he was talking to his sister across the table.  In his world he was still in the army.

In my world I hurt … for he is already leaving us.  Every time I see him he has slipped farther away.
His Peacefulness
My biggest concern is that he is content and peaceful and happy.  It breaks my heart when I see him clam up under certain circumstances.  It breaks my heart to know that he doesn’t feel he can talk about Gramma.  It breaks my heart to see him hold himself back from certain emotions.  It breaks my heart to see our family members hurt because he is slipping away.
Grieving
I do believe some of our family members are already grieving his passing.  Every now and then some of his personality will shine through… but for the most part the Grampa I knew growing up is… gone.  I can’t pinpoint the moment he was gone… it’s been a slow digression over the past 6 months.  But he’s leaving us more every day… what a painful goodbye, for me.

My Uncle or Aunts or Mom may have a different take on this… but the Grampa I knew is mostly gone at this point.  He is a shell of the man he was… holding onto this earth for some unknown reason.

This I know, God’s timing is perfect…

Lord I know you will take him in your perfect timing.  You have a master plan… and while I don’t understand or even have the ability to comprehend it, I know you’re in control.