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califsand

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237
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01/2004
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ca
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sant barbara
I didn't write an obit or an "In memory of" for Dad... it seems that I was overwhelmed by everything going and and figured since I talked about it in the caregiver support group that I had said enough, or too much, as it was. Well... I was wrong so here goes...

My father, Tom, was born on January 2, 1949. Today is his 60th birthday and though he didn't live to make this landmark, it is still his special day and he deserves to be honored. He was born in New York to an Italian mother and a Black Irish father. He moved to Southern California when he was a boy and he loved it here so much.

My dad was a character, full of moods and sometimes unpredictable. He was silly and loved to make jokes, funny noises and especially enjoyed picking on people. As long as you didn't take the teasing seriously, he was a fun guy to be around. He had a romantic side that wooed the ladies and his daughters, showing us all constantly that true love does exist. He could make you feel awful when you messed up and like the best thing in the world when you did well. He showed versatility and creativity in everything that he did and was a jack of all trades. Over the course of my life he was a store owner, a fireman, a safety manager, a handyman, business owner, a photographer... he loved nature and camped for years on end and taught his children a deep love and respect for nature. He was a tree hugger that loved to gamble, drink cocktails, smoke, drive fast and hugged his children and grandchildren constantly when around them. He had a special affection for the sunrise and for several years he would go on every special occassion to photograph it. It was always special to wake up on your birthday to an email with photos from the morning and a special note from Dad! As he became ill he took more photos than any other time and would go every morning to watch the sunrise at the beach near his home and he would take special drives to have photo shoots. He was sporadically social and would often show up at a family get together just long enough to take pictures and then would leave quickly so he could go home and email them to us.

My father loved to gamble and was a regular visit at our local casino. Until his illness progressed to a point of requiring full physical assistance, I took him 3-5 times per week and we would pig out in the buffet and play slots until late into the night. These trips were special because during the 40 minute drive he would tell me stories, while he could still talk, and we would listen to his favorite country music and dance in the car. As he lost his speech, I would speak for him and repeat the litany of things he would say at certain points on the drive... if cars passed us or drove recklessly around us on the mountain road he would give them the finger and laugh foolishly and as he began to have difficulty with doing that, I would do it for him which made him laugh even harder. For a good stretch he was my lucky charm at the casino and if he was near me I would win far more often than I lost! We had a lot of fun on those trips even though he wore me out.

As his ability to walk started to become impaired he talked me into taking a trip with him to New York so I could see where he was born. We went in October and got to experience the fall colors. Man it was cold! He insisted on driving the rental car the whole trip and while that was frustrating and scary at times, with me as the navigator we always found our way...sometimes we got lost first and he would get upset but I think that trip really taught him to trust me. We pigged out on fresh apple juice and fresh off the vine concord grapes until we were sick to our stomachs. We visited cemetaries (Dad was fascinated by cemetaries) and took pictures of family graves. We spent a few days in Niagara Falls in the Presidential Suite of the hotel overlooking them (Dad figured since he was dying we better live it up) and we hit casino after casino. It was a special trip.

During this period of his illness Dad took on a few mottos such as "why not, what's it hurt?" and "what's it going to do? Kill me?!" There were moments where some of his behavior made me a little nervous but he was right, it wouldn't kill him, ALS would...

It is really hard to put into words the special bond between father & daughter, the close friendship that forms when you spend so much time with someone you know you are going to lose and the heartbreaking sad feeling that comes with the loss. Dad was diagnosed with ALS in 2004 but had been sick for years. It took 2 or so years of testing and medication failures before the diagnosis came. He felt ill for years prior to that and self medicated... I spent half my 20's and most of my 30's worried about him and living in fear that he would die. Fortunately I coped with my fear by being with him at every opportunity. He used to tease me and say that we were like a married couple but without the sex, strings or drama. It was funny but also true. No man could compete with my Dad! Nobody understood my sense of humor like he did or could make me laugh, cry or feel loved and accepted like my Dad. We picked on each other but gave unconditional love and support throughout everything. He always was there to pick me up if I fell and he without fail made me feel better. He was my best friend.

Watching him waste away from ALS was the most horrific experience. My father was always a large man, both in body and spirit. For a while it was just his body that shriveled but towards the end, his spirit faded also. It showed through in moments of pure joy though and our last night together he gave me a smile, the first in weeks... a smile that said "I love you" and "thank you" - a smile that was just for me. I have gone through some awful things since that smile... I held his cold body, I planned and attended his funeral, I watched his body be put into the ground, I have had nightmares, crying spells that lasted hours, I have been angry with him, I have had moments where I tricked myself into believing that he was still alive and healthy and would be at my door wanting to go on a spuradic adventure, I have felt suicidal and been in such black depressions that nothing mattered... I'm adjusting to life without my father and I'll be okay but I sure do miss him. They say that nobody forgets their first love and my first love was my Daddy. He made me feel safe, treasured and loved unconditionally and I miss him painfully.

Today is his birthday. I was up early to watch the sunrise but the sky was full of clouds and fog. I did go to his beach and give it a shot, with HIS camera... but no luck. Later I will go to the casino with my brothers and tonight we will all have a toast to him and celebrate his birthday as we did, with him, in years past. On the drive up I'll tell my brother some of the stories that Dad shared with me and he'll laugh... because the stories were usually outrageous and full of baloney but he told them with such flourish that you wanted to believe. He called himself a nutty nut and it was such an apt name for him! :)

Happy 60th Birthday Dadder, I miss you and LYLC (love you like crazy)

Love,

Sandy (Sander McDander)
 

Al

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Beautiful story Sandy. He was a lucky man.

AL.
 

Icanmanz

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Jul 14, 2007
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Texas
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Tomball
Hi Sandy. That is beautiful. Read the whole thing, and I was picturing you guys the whole time! You'll had a blast, huh? May he rest in peace, and Happy Birthday to him in Heaven. I wonder if he invited my Rudy to his birthday party...........LOL.........aren't I silly? Knowing my Rudy he probably sneaked him a can of Bud! Your Dad was so lucky to have a dear daughter like you. Thanks a bunch for sharing! Oh, today is my niece's birthday, too, and mine is on the 20th, right on Inauguration Day! God bless you Sandy!

Irma
 

sharona

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Dec 8, 2006
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il
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joliet
Hi Sandy,
So sorry to hear about your Daddy's passing. Today is my brothers birthday he would be 79 but he died from MS at the age of 60. On the 29th of this mo it will 6yrs since my son(43) died so I know how much sorrow you are having But just remember the good times you had with your Dad I sure he was very proud of you.
Sharon
 

Connie

Active member
Joined
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Diagnosis
03/2008
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Granite Bay
Hi Sandy.

What a wonderful daughter you were. You should be very proud of the love you shared and your devotion to your father in his life with AlS.

I am experiencing your reality with my husband who I adore.

Take good care of yourself. Your Dad is with you from above.
 

kelly

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ny
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A great tribute to your Dad...stay strong..sounds like he really stayed strong mentally..he would want this for you too!
 

califsand

Distinguished member
Joined
Sep 21, 2007
Messages
237
Diagnosis
01/2004
Country
US
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ca
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sant barbara
Just got home from a day with my brother celebrating Dad. We went to the casino which was his all time favorite thing. Had a break with one brother showing up and the three of us had a few toasts to him with our sister on speaker phone, it was fun! I played Dad's favorite games and left with a profit and that was good too. I know he is happy with how we chose to celebrate his day, doing all of his favorite things... and wherever he is I know he got to see a spectacular sunrise. Actually, I like to think that where he is the sky is sunrise all the time.

Happy Birthday Dad! Love you :D
 

laurel

Very helpful member
Joined
Jul 19, 2007
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1,431
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DX UMND/PLS
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07/2007
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Vancouver
Sandy that was a beautiful tribute to your dad. I am sorry for your loss.
Laurel
 

Zaphoon

Extremely helpful member
Joined
Aug 2, 2008
Messages
2,855
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DX UMND/PLS
Diagnosis
08/2011
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Missouri
City
Springfield
Thank you, Sandy, for that sweet tribute to your dad on his birthday.
 

mndireland

Distinguished member
Joined
May 17, 2008
Messages
123
Reason
Loved one DX
Diagnosis
10/2007
Country
IE
State
Ireland
City
Dublin
Very touching Sandy. I hope I can say the same when Mums time comes.We have had some good laughs at times, sometimes they are dificult to remember and sometimes i get frustrated with her,she is not always an easy patient! but after reading this really touching tribute, I realise, I still have time to make more stories, to share more happy times. Thank You. You might not have realised when writing this,that this is actually a little wake up call to us carers that have started feeling sorry for ourselves, but I will be less cranky and sad now, and start to enjoy my time with her more!
 

CindyM

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I love your tribute to your Dad. Thanks for sharing.
 

califsand

Distinguished member
Joined
Sep 21, 2007
Messages
237
Diagnosis
01/2004
Country
US
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ca
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sant barbara
mndireland... my dad was a difficult guy, cranky, moody, mean sometimes but then the other side of him was the most wonderful guy ever. We would be having a day where he was being a pain and I would be SO frustrated with him and then something stupid would happen, like I would drop something and he would let out the biggest laugh, I would laugh and it would be all better. In the moment it is really hard sometimes and providing care takes such a toll... but if you didn't love the person, you wouldn't be doing it. I found with my Dad that surprising him with a little thing, like new wool socks, would make him so happy and sometimes that was all that was needed to cut the monotony. As time moves forward and I become more distanced from the hard work of caring for him, I'm noticing that yes, the mind remembers more good than bad... and although I've beaten myself up for the times I wasn't perfect, they are still way less than the times I made him really happy and took good care of him. Now I remember the twinkle in his eyes when I would read his mind or give him a surprise. Man he sure loved to watch that stupid show Wipeout and when I realized that I had a date each week with him to watch it together. He would laugh and laugh and laugh, even though it made him cough, and I loved to see that happy face of his.

The last month he lived with me was October and we had been having LOTS of hard times, lots of meltdowns from both of us, etc. In fact, it got to a point where I was calling for firemen to help me pick him up each day due to so many falls and I was losing it. My cousin took him out one day and I went and bought a ton of halloween decorations and went crazy with them on the front porch. Then I spent about an hour and put stickers from his room to the bathroom. I used stickers that had bloody skeleton feet and made a path all the way and put up decals on the washer & dryer that looked like monsters were climbing out of them. I used decals that looked like rats crawling through a hole in the floor and found a few good spider ones and put them on the bathroom walls... I lined the shower doors with the stuff that looks like blood dripping and put a great decal on the bathroom mirror. When Dad got home he was still grumpy at me but when he saw the porch it surprised him. He totally jumped but then had that twinkle and was laughing hard. Later my brother went to shower him and it was the greatest moment in a long time! Dad saw the footsteps through the kitchen and was laughing and wobbling like crazy on the walker...then turned the corner & saw the monster coming out of the washer & it made him jump! He really was close to falling so my brother kept close to him... the best moment is when he went around the corner into the bathroom and came face to face with the monster in the mirror. My brother DID have to hold onto him during that. It was GREAT! Just that helped us pull through for a bit longer and if he got grumpy I could redirect him and talk to him about how funny it was to see him almost pee his pants when he saw the mirror. Without fail, it made him laugh.

I don't know if stuff like that will work with your PALS but we relied so heavily on humor and silliness... it helped us both. I sure do miss my Dad when I think about him laughing.

Take care,

Sandy
 

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brendapals

Senior member
Joined
Jul 6, 2008
Messages
953
Reason
PALS
Diagnosis
06/2008
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US
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any
City
any
Sandy,
A lovely tribute to your dad,
I wish you peace in the new year,
brenda
 

KeeKer

Senior member
Joined
Nov 17, 2008
Messages
830
Reason
Loved one DX
Diagnosis
08/2007
Country
CA
State
SK
City
Theodore
Glad you had such a good time for your Dad's birthday. I've always had a problem with the firsts of all the big dates after a death. My brother loved to laugh too! We emailed 4 times a day, every day. Had a hard time breaking the habit after he died. When I saw him every 2 or 3 weeks we would talk about the things we sent each other and laugh! He wanted everything as normal as possible for as long as possible. He got to live at home until the last week. I think what got him was he had an episode where he couldn't breathe and went by ambulance to the hospital. They made him wait for 4 hours,made him feel like he wasn't worth worrying about. Made me furious! He went to the ALS house in Wpg. He really liked it there. He read the emails I had sent the morning he died. They have a great thing there where you can buy Christmas lights for a tree in memory of someone. They had 12 trees this year and were starting on the hedge! What a great idea for the season!
 

califsand

Distinguished member
Joined
Sep 21, 2007
Messages
237
Diagnosis
01/2004
Country
US
State
ca
City
sant barbara
KeeKer,

That is a great idea about the lights! Dad's hospice house where he lived has a fountain and when someone passes they ask the families to paint or color rocks to put in it. My neices & I did several and I placed them at the foot of the little waterfall. Dad loved rocks so this was a good tribute to him for sure.

You can still send emails to your brother! I have kept Dad's email active and I have the password. It is surprising how many emails he still gets from people and I think that they need the normalcy of it. I told them I will keep it active for a while so that they can wean themselves. I had a friend that passed away a while back and he was someone I IM'd with and emailed often... I sent him messages every day for a while, then slowly weaned myself. It just made me feel better.

I think that the hardest day will be my birthday in July, because Dad always made my birthdays special. Even this past year I went and hung out with him and we watched all of his favorite youtube videos and had cocktails together. He was bedridden but knew it was my day and had a gift bag for me that my sister in law set up. The HUGE smile on his face when I came in was the best gift and seeing him light up as he pointed at the bag for me was great. I know that this next birthday will be rough for me and already family is talking about taking me out of town somewhere on a little trip. We'll have to see what happens. I just miss him... wish he was here to hug & lean on, you know?

Sandy
 
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