The aftermath - a follow up

It was 11 weeks from when I am writing this that the ambulance took my wife away. It was 11 weeks ago that I last spoke to her. It was 11 weeks ago that I was doing chest compressions for 8+ long minutes waiting for the ambulance to arrive. In a way it seems like yesterday. In other ways it seems a lifetime ago.

I am still amazed at the views this blog gets. I am more amazed at the comments. I am extremely grateful for the kind words and thoughts that have been sent my way. I am gratified by the fact that people find some help, information, and attachment here and then take the time to comment on it. As rare as MSA is, there are way too many families out there that are facing this terrible nightmare of a disease. That is the main reason I am posting now. I feel somewhat obligated to do so. However, I gladly would do so every day if I thought I could offer any comfort or help to anyone dealing with this disease (or any of the alphabet diseases).

Even though the diagnosis of MSA is a death sentence, (sorry if that is harsh to anyone reading this that has not accepted this, but unfortunately it is true - at least now) it is so hard facing the end. I am surprised every day at how the loss of my wife is still so raw. In my case I think one of the things that made/makes it so hard is the fact that my wife just "left". I always saw the end as a more gradual thing. Maybe hospice in a bed, surrounded by loved ones, and saying goodbye. My wife passed out and never woke back up. Even though we said our goodbyes, it was not at all what was envisioned. She was not able to say goodbye back. In a way this is a good thing. One of my wife's biggest fears and concerns was a feeding tube, a catheter, and a long drawn out ordeal. I know my wife's condition made her miserable. The inability to communicate was one of her biggest frustrations. She could not speak well at all, with no volume. That make the phone impossible to use. She could not type on her computer due to the tremors and lack of motor control. She was isolated from all those she loved, to a point even those in the same room. I have posts on this site about how many times I said "what?", "excuse me?", or just "huh?". There were a lot of times that she would just say never mind and give up. From that perspective the way things went were definitely for the better. From a "closure" perspective, it was far from perfect; at least for us left here.

I find the days getting easier to deal with. I know this is a good thing. I know this is the natural course. I also know that in a way it makes me feel guilty. It seems like not feeling so sad is not fair to her. But again, I know that a life with nothing but profound sadness is not much of a life at all. I also know with all my heart that she would not want me to be very sad all the time. Every one of us here on earth now will be dead at some point. This is the case with every person that has or ever will live. It is still hard to deal with when it hits you.

The thing that gets me the most is music. I can hear a song from our past, particularly the early days of our relationship, and be hit with a flood of emotions and memories. I still find myself thinking I will have to tell her about something I have seen or heard when I get home that night. Being together for almost 39 years and married for 38+ develops a real attachment at multiple levels. To lose that connection is weird and very difficult to do without. The longest we were apart for those 38+ years was less than a week. To now be at 11 weeks without seeing her or talking to her is still very odd and discomforting.

I will post here when I have something to say. I do check the comments and try to answer anyone that gives me a contact with a question or a request for contact. I do think daily of those that I have "met" through this blog, facebook, and some other MSA-related sites. I would still love to hear from anyone that wants to drop me an email, a comment, or a question. I welcome any of you with questions to look at the three posts here entitled - "Maybe this will help..." parts 1, 2, and 3. They are a synopsis of my wife's symptoms and how we dealt with them.

Until later.

Thanks

I wanted to take a moment to thank all the people from around the world that offered their condolences. I greatly appreciate your thoughts and prayers. The pain has been made easier to bear by the kind words.

I am not sure yet what I am going to do with this blog. I will see. If anyone has any questions or thoughts they would like to share or ask, please do so.

My best to any and all afflicted with or affected by this horrible disease (or any of the alphabet diseases).

Again, thanks,

Scott

Laugh, Live, and LOVE

This past week has been a surreal experience. I have had the unfortunate experience to lose many family members over the years including my father, but nothing has been close to this. I have had many, many thoughts - as I have stated here before, I am more "creative" when emotional (as you can see in the previous posts from the past seven days).

Here are some thoughts on life:

Probably the biggest advice/most important thing I can pass along is amost a tired cliche - live every day as it is your (or your loved one's) last day. Although my wife had a terminal illness, I thought we had time to do and say what we wanted. If you have something you have always wanted to do, if there is any way you can do it (or a close substitute) financially - I recommend you DO IT! If there is something you want to say - same advice - SAY IT! Besides the loss of my lifetime companion, things left undone or unsaid are the hardest for me. This is especially true if these things are simple things. You may want to go for ice cream. If you are a caregiver for someone that cannot move well, that can be hard. It is easier to say to yourself (or your loved one) - "We will do that tomorrow". I used to tell my kids (in fact we had a little chant that I bet they remember) - tomorrow never comes. By definition that is true - yesterday's tomorrow is today. So, waiting for tomorrow is fruitless in many ways.

Try to find something to laugh at. This one was probably one of the things that my wife and I did the best. She had a great sense of humor and I and am a reknown idiot. I do remember we laughed at many things last Saturday (her last day conscious). I am very glad for that. Oh, there were days we wept togther as well. I feel that is important too, but laughter is great for everyone involved. Try to find something that can make you laugh, as often as you can.

Involve family and friends. I feel my wife and I left this one a bit short. It was so easy for us to withdraw and just have each other. That is great, but it means two people are trying to "recharge" each other. When you get run down and depressed, that can be impossible. I believe the most important thing you get by contact with people that love you, and you love, is strength. We all need to be recharged with love, faith, and friendship to make it. Our internal "batteries" can only go so long without a charge. Like I said, if both of you are low on "juice" that will not happen. You are running on empty. The first two points above can help recharge to a point, but ultimately you need other people to pull the "power" from. Our kids and family were close, but see point one - everyone thinks there is going to be a tomorrow to visit. If you are the caregiver, remember YOU need recharging. This is probably the area that I was most remiss in. I felt like I needed to be with my wife every moment I could. Don't get me wrong, I am greatful for every minute. But, going back to point one, I wonder if I had stepped away occasionally if I would have had the strength (or drive, or gumption, or whatever) to take my wife out more, even if it was just to ride around. Caregivers, take care of yourself. I know I am not the first to say that by any means, but it is important enough to repeat often.

Tell those you love that you love them - do it often. Then repeat. 'Nuff said.

As a follow up (and maybe conclusion) to the above points I will get personal again. We have had family and friends around all week. We have had food enough to feed small countries. We have cried together and we have laughed together. All of that has been wonderful In fact, I do not know how I would have made it through the week without it. However, my wife (and I) would have LOVED to have the people, the food, and the fellowship when she was alive. If you know someone that is suffering with an illness, especially if they are limited in movement - go see them! If they are family, you are REQUIRED to! Any of the gatherings we have had this week, had they happened last anytime in the previous weeks, would have thrilled my wife (and me) to no end. If you know a family that is going through something like mine just did, take them a meal or a dessert. Drop them a call. Send them a card. Offer to go shopping for them. I am lucky in that I have six children that all live fairly close by and they helped me with this, but we still did not get everyone together and commune like we have this past week. Like I said, my wife would have loved it, as I am sure most people in her condition would have. Make a point to contact them.

Enough for now. I realize I got a bit "preachy". Sorry. I do feel strongly about this for obvious reasons. I hope I can live up to my own words as I go forward.

TEARS

As I wipe my eyes again

I know,

I'll never be the same.

I think I'm done, 

but they can well back up

whenever I hear your name.

Sure

I laugh at things.

But it's more for them than me.

I wonder if life will ever seem

the way it used to be.

Obituary

Carol's obituary -

Carol Poole

Carol J. Condon Poole of Winston-Salem, 56 left her wheelchair behind forever Monday May 30^th after more than five years battling MSA (multiple system atrophy). She departed after a final selfless act of organ donation with her loving family by her side.

Carol was born in Pennsylvania to Marlen Condon but grew up a true Florida girl in Plantation, Florida. After graduating from Plantation High School Carol attended Western Carolina University where she met her husband-to-be. After becoming a certified operating room technician at Presbyterian Hospital in Charlotte, N.C., she went on to become a R.N. Carol was retired on disability from Forsyth Medical Center where she worked in the operating room for over ten years. Carol was known at work for her compassion, professionalism, and sense of humor.

After WCU, Scott Poole and Carol were married. On May 16^th they celebrated 38 years together as husband and wife. Carol was a loving mother of six children – Christi Waiters, Kimberly Bowers, David Poole, Stephani Poole, Patrick Poole, and Bailey Poole; and a grandmother to Hannah Byerly, Landon Byerly, and Alyson Bowers, all of the greater Winston-Salem area. She was a doting Mom and Nana to all. Her love as a wife, mother and grandmother was endless.

Carol is survived by her above mentioned family as well as her mother Marlen Condon of The Villages, Florida, and her twin sister Karen Parsons and her family of Summerville, S.C

Carol's life will be celebrated on Thursday June 2^nd at the Regency Ballroom of the Quality Inn & Suites 2008 S. Hawthorne Road. W-S N.C. from 6:30 – 8:30 pm. All that knew her are asked to come and share your memories and listen to others share theirs. Food and beverages will be provided. Dress as you wish.

In lieu of flowers, please send donations to:

Team Carol

c/o Trinity Center

640 Holly Avenue

Winston-Salem, N.C. 27101

Eternal

The essence of someone

is held in the memories

and bound by love

always to remain.

People are eternal

if they are remembered with love.

R.I.P. Carol

Melted

If the sun and sky is dimmer it is because the light of my life went out! I will always love you!





To Carol:

I will always live with what I did and did not do. I am profoundly saddened by my inability to do all you needed. It was not from lack of concern, effort. or love. Our 38 years+ was WAY too short. You were the yin to my yang. I am left with a hole in my heart that cannot heal. Thanks for leaving part of you here with me in our six great children. They salve my wound.


Snow always melts!