Jun 05

Hot hot hot

Hot. Steamy, wet hot. Walking through wet wool hot. Hair plastered to head and neck hot. Can’t breathe, can’t sleep hot. No matter how you turn your pillow no cool hot. Tossing and turning, getting up I lay at the foot of the bed, closest to the window waiting to catch a wimpy breeze. No screen, in no time a banquet has been called in my honor, after the ‘taster’ mosquito finds me juicy. Shut window hot.

Dozing I drift back and forth in time. To summers as a child, where my mom would sneak in, just as I’d fallen asleep, pulling the covers up to my chin, brushing the wet tendrils off my face. And place a kiss on my forehead. She’d repeat this about 20 more times in the night until we both woke exhausted. Being 90 lbs. she was never warm enough, but my father and I were always hopeful of a cool breeze from anywhere. Good thoughts.

I awake, startled, confused to where I am. Nothing is familiar, but someone had to keep covering me up, for I was swathed to my neck. I call for Mom, no answer. But this ball of fur comes charging at my face with a wet tongue for kisses, and I realize I am in my bed with a puppy named Beanni, who like Mom, is always cold, and nicely pulled all the covers back up, so he could burrow under them. He has a number of unusual talents, but still refuses to get housebroken.

But, to wake up afraid or confused in the middle of the night, waking up from long, sticky dreams that hang on for what seems forever, sweating next to this 5 lbs. of heat and love, I am grateful. Grateful for not being alone. Grateful that heaven has a thermostat, so when I finally meet my mother, she can bundle me up to her heart’s content.

Papa, are you there? It’s me, Vicki …and Beanni

A much younger Beanni.

 

Permanent link to this article: https://vickisvoice.tv/2011/06/hot-hot-hot-2/

Jun 04

Mayo Clinic

Getting into a medical testing for Frontotemporal Dementia is only the first step. Paying for being in the test is even harder.

So far, I’ve had to cancel appointments 2 times. How long they will keep me on the list is unknown.

Mayo Clinic is THE leader in looking for the source of FTD and hope to find a way to slow it down, stabilize it and finally – and what I am praying for – a cure.

What you don’t realize, in any kind of participation in medical testing, is the out of pocket cost to the patient. My cousin, whose wife, passed away from ALS (Lou Gherig’s Disease) recently, was/is unemployed when she was diagnosed. They searched everywhere, and found a blind test in MS, an answer to a prayer. But you pay your own housing, travel, meals, etc. But, if one is facing a literal life and death situation there is nothing you won’t do to win the race over disease, and hold on to life.

I want to thank those who have contributed to help me raise the money to be in Mayo Clinic’s FTD study. I want to go to hang on to hope, to be there to keep the disease away from my children and grandchildren, to help if I cannot have a cure, or gain more lucid time. To be with others fighting, just like me.

Is this an “ask” ? It is.

With blessings and love,

Vicki

Permanent link to this article: https://vickisvoice.tv/2011/06/mayo-clinic/

Mar 27

Merry Christmas, Happy New Year, Happy Valentines, Happy St. Patricks, Presidents & MLK and many happy birthdays

One could say I’ve been away a long time, and I have.

Computer was down during the holidays, and that was great, being with family, my amazing family, then the equally amazing friends who stopped in during that time. ;o)

1/1/11 My children surprised me with a Morkie – Maltese/Yorkie – a funny little guy about 2 lbs. Smart, too. ‘Way smarter than I it seems. The more I ‘pup’ protected the more he found ways around it. One evening I attempted to turn on my computer to bask in all my birthday wishes. After 7 minutes, it dies. Turned on the lamp. Nada. The radio, not so much. Cell phone, followed by land line. Some shaggy 3# pup sat, head down, looking like he’d just lost his only friend. Holding all the chewed cords, I thought he might be right. Oh, ok, he was never in much trouble. But it took weeks to replace all the chargers. But in the meantime I fell in love with just watching this goofy puppy, now named “Lord Beanni Frizzlebottom”. Watching him grow, chase his tail, seeing the world from my shoulder…

And then I became afraid of turning on the computer. Bad sign. But on this freezing, quasi Spring day, with the B’s presence and fortified with Jesus, I thought I’d just take a try at it.

Love & Blessings to you all.

Papa? I’m finally back, Vicki oh! and the Beanni

IMG 1297

Permanent link to this article: https://vickisvoice.tv/2011/03/merry-christmas-happy-new-year-happy-valentines-happy-st-patricks-presidents-mlk-and-many-happy-birthdays/

Jan 23

Other Voices: A year of loss, lessons and blessings to share…

Vicki and I have met many wonderful people – some online and some in person – whose lives have been affected by FTD. Some of them share about their lives through writing – books, blogs, Facebook posts. Earlier this month one of our friends, Michelle Sewell Burdette, shared her memories and thoughts on the 1-year anniversary of her father’s death from FTD-Pick’s. We wanted to share Michelle’s story with you and she’s given us permission to post it here. – Jim Coyle


(Posted online by Michelle Sewell Burdette January 5, 2011.) A year ago tonight was the last time I went to bed wondering when I would receive “The Phone Call”. You see, I knew “The Phone Call” would be coming very soon because I had been with my dad at Christmas and realized it was time for the Lord to bring him home. “The Phone Call” came at 3:45am on January 5, 2010. My Daddy had gone home to heaven.

I knew since the day we received the diagnosis of FTD- Picks that “The Phone Call” would come someday. After all, I’m a research fanatic so I had read all about the disease, learned what the prognosis was, learned what the symptoms of early, middle and final stages were. Armed myself with a wonderful online support group for families with a loved one suffering from FTD Picks, bought and read books on the disease, and realized that with no treatment or cure, there would be several last times with my dad. There was the last time that he knew who I was, the last time I heard him speak, the last time he voluntarily hugged me or kissed me goodbye, the last time I played the piano for him, the last time he smiled at me and the last time I told him what a wonderful Daddy he was and how much I loved him and said goodbye and then stood in his room at the nursing home (Dec. 26th, 2009) and prayed for God to take my Dad home and welcome him to heaven.

I’ve learned so many things, some good, some bad, and some just plain life lessons in the past year. As I sit here struggling with the fact that in a few hours, it will officially be one year since I lost my dad; so many things are flying through my mind and I want to write them down and share them with the hope that I can offer hope, growth through what I’ve learned, or just plain make myself feel better because I’ve gotten it out of my system. If you’ve been tagged to this note, it’s because I feel there’s something written here that you can either benefit from, be blessed with, or so I can thank you.

Here’s what I’ve learned:
1. NO ONE can ever replace a little girl’s Daddy. He is a one of a kind person and relationship to a daughter. To the daddies and the daughters out there, realize how important the father-daughter relationship is and nurture it into the beautiful garden it becomes over your journey together.
2. I was extremely blessed to have received the earthly father I had for he taught me so much and continues to teach me even to this day. There are times when my father’s words echo in my head over and over when I’m working through difficult tasks. And, as always, heeding to his advice has served me well.
3. I enjoyed a 41 year relationship with my father that many are envious of. That in itself is a blessing to have such a wonderful relationship with a father. No relationship is perfect and every relationship requires work. However, if the relationship is strong and loving, even the arguments or disagreements can be worked through quickly.
4. Cherish every second you have with your loved ones whether they’re healthy or ill. You will always have the memories and not even death takes those away. Ironically, FTD can, but not death.
5. Treat each moment with people as if its the last time you’ll see them. We all know death can come at anytime with no warning. It’s much better to live with memories then live with regret.
6. No two people grieve in the same manner. Some people choose to ignore the grieving process and deal with the loss by keeping busy. Others choose to openly express their grief. And still others, will remain as stoic as possible and grieve only in the privacy of their homes.
Then, there are people like me. My grief journey is an up and down battle so far. Some days I just burst out crying over a memory and from the longing of wanting to talk to my dad. Other days, I think of things he did or said and smile or actually laugh. For the most part, I try to remain stoic when around others and only allow myself to cry when I’m by myself. I’d rather experience those moments between me, God and my dad.
7. The best advice I received was to create a place in my yard where I could go to just sit by myself and think about my dad, talk to him if I wanted to, or just smile as I walk by. I simply planted two yellow rose bushes on Father’s Day near a large tree and added a memorial stone stating, “Planted in memory of a life well lived”. I’ve spent a lot of time out there over the last 6 months.
8. You cannot, no matter how hard you try, put a timeline on grief. I will always miss my Dad, I will always wish I had more time with him, and I will always love him with all of heart. The loss of such a relationship cannot be resolved by putting a timeline on it. There never will be a “project finished” point. There will, however, come a day when I will be reunited in heaven with my dad. What a blessing it is to know that!

I’ve received many blessings in my life and some of the blessings have come through the loss of my father.
1. I’ve met some wonderful people who have become trusted non-judgmental listeners.
2. My relationship with my brother Mike has deepened and we are in contact much more frequently now.
3. My relationship with my mother (which has always been good) has become so much more than a mother daughter relationship. She TRULY is my best friend.
4. I have met two wonderful people that I have to name on here because they are so inspiring to me. Vicki Wells Bedard and Jim Coyle. Vicki, you have given me what I missed on our FTD journey with my dad because you choose to remain so open about your own diagnosis and blog and share your thoughts, fears, successes, trials and tribulations. I could never thank you enough for sharing your journey with us as well as shedding light on a disease that is in severe need of attention. Jim, the work that you do helping Vicki, your community, the FTD community and your general nature are a blessing to me as well. I truly feel blessed that my life has been enriched with your presence.
5. I have been blessed to be reunited with old friends who knew my dad which allows me the opportunity to laugh over things I’d forgotten he did or chuckle at some of the things he said.
5. Finally but definitely not the least, to the entire Leiphart family, an entire family that’s blessed my whole family over the years. I can never repay or even begin to express my gratitude to all of you for your constant and continued support of my mom and dad while he was ill as well as the open arms you continue to all have for my mom. Sandy, Larry, Mark, Debbie, Julie and all, you have my forever gratitude for being the family for my mom since I’m not in Pennsylvania to be there.

The last thing I want to write is to my Dad.

Daddy,
I know you’ve seen our tears shed because you are no longer with us. But we all know this journey ended as it should and we know we’ll see you again in God’s time. The tears shed are our tears of missing you, loving you, and loving all the memories we each have of you. We are happy that you are at peace with our Lord, but we are human beings and tend to be selfish. I would do just about anything to be able to have one of your huge bear hugs, hear your laugh, or get a call from you to say Hi. But I do realize that you’re in a better place than we are here. On this one year anniversary of your homecoming, I just want to tell you that I love you to heaven and back and always will.
Love and miss you forever,
Your “Missy Boo”

Permanent link to this article: https://vickisvoice.tv/2011/01/other-voices-a-year-of-loss-lessons-and-blessings-to-share/

Dec 16

Old age, FTD or just plumb unlucky?

Well, I just cleaned out my silverware drawer and 2 shelves in my frig. An hour later, my stomach growling, and my body trembling from stooping, etc. As soon as sat down to rest I remembered that I had gone in there to make a sandwich. I grabbed a piece of cheese & some crackers I found while cleaning, cuz was too pooped to really ‘cook’ anything.

Daughter Beth, primary caregiver, makes sure I am invited to any family thing. This last weekend she moved to a new house to match her new single-mom status. I only babysat their tiny Maltese. In the 3 hrs I was there I managed to lose my cell phone, and the left lens of my glasses. “Don’t worry,” she said, “we’ll check everything in the morning, including outside.” Had our first big blizzard that night.

Thank God for have a local call landline, unless it stops working. Scratch all phones now.

Loaned my car to the kids. 2 almost flat tires, battery dead, and when you open the flip door at the back, the window falls out. (I have no idea about the last.) they fixed the first 2, and duct tape is still the best darned think next to sticky pads and Velcro.

Yesterday my friend comes to help me clean, and I get to nap on fresh sheets (no, not in a pile on the floor, on the bed like normal people!!). Just cuddled in and the 7 smoke alarms start – first 1 beep now and then – then constantly – for over 45 minutes. She turned off the clicky thing in the gray box, and we have peace. But no safety. “Did you say something?? I can’t hear you.” (laughing)

All in all, so far today just the dead phone. (knock on wood). Wait. Nope, can’t login to Facebook.

LOL, stuff happens. My friend, also in her 60’s says ‘wasn’t this supposed to be our golden age?’ to which my other friend replied, ‘didn’t you hear? they redid it the the leaden age’. I agree.

Papa, how about checking to see you have the right person & address, please? And, when I pray for my friends and I to have some luck for a change, I meant GOOD luck, and yes, I will buy a lotto ticket now and then. It may be my retirement plan.

It’s me, Papa, Vicki.

Permanent link to this article: https://vickisvoice.tv/2010/12/old-age-ftd-or-just-plumb-unlucky/