Past CALS Rollcall

There is no perfectly ordered progression to the end in ALS or any other condition, try as we might. Therefore, there is always regret.

Try not to let it define or overshadow everything you had and knew leading up to that point. This does become easier with time as you can put your years together into perspective and remember both what you shared and what you accomplished individually in your lives.
 
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I am a little over a month since Tom died. There are times I can't believe he is gone. Am I living a nightmare? But, I had the "living a nightmare" thoughts when he was ill. Now they just shifted to his being gone. Sigh.
I keep busy organizing and doing chores. I am almost finished with the office (my sewing room) where I threw all paper work for a year. I went through all the papers that I had in piles and filed or shredded. (I did pay the bills during the year.)
I am doing things I would have asked Tom to do, like trimming the forsythia. The garage needs attention. Perhaps I can even park the car in the garage! So, I am reading about garage organization and systems. Fun stuff!
Next week I will be at the NJ shore at a small hotel. Tom and I stayed there in the past to celebrate our wedding anniversary week, so I am going rather than stay home. I am trying to honor him each day with my life. From this hotel, I can walk to Church. Walk to the beach or boardwalk. Ride one of their rusty old bikes. They have a big porch where I can sit and crochet. I hope I can do this without him. But he is with me. In my heart. In my memories.
I think of you all often. In my prayers.
Kathy
 
Dear Kathy, thank you for your heartfelt post. Your love for Tom is evident.

It's hard to believe, I've been a widow for 11 months now. I still go over and over things in my mind, as if that would make it turn out differently. Yesterday I was out running errands and stopped into Dick's sporting goods store for a couple of things for myself. When I walked in I realized the last time I had been there was to buy Ralph a couple of pairs of the loose shorts he liked to wear. I nearly teared up and ended up walking out empty handed.

Our anniversary is at the end of this month. It would have been 20 years. Last year I kept thinking he would still be here and after wondered how I would be able to carry on that long. Now I just feel lonely and sad a lot, especially at night. I miss him.

V
 
Thank you all for the sweet notes of encouragement. I hate that any of us are going through it, and sadly, I know exactly what you are feeling.

Timothy loved to shop, especially grocery shopping followed by cooking some of the most amazing meals. I walked into one of his favorite grocery stores and nearly had a complete breakdown. I walked out empty handed, too.

Kathy - I love that you are going to take a trip where you and Tom went. I would only give you a gentle warning to be kind to yourself. I spent the first night in a hotel without Timothy just over a month after he passed away. The hotel and town had no significance to he and I as a couple, and it was still almost too much. Have your friends/family on speed dial in case you need a respite from the loneliness. Know that your friends here on the forum are with you in spirit and sending you strength and love.

I have started the process of spreading Timothy’s ashes. I have a list of some of his favorite places, and I’m planning on taking at least this first year to work my way through them. It still hasn’t made it any more real.

This past Monday was 5 months since I lost him. Through our 23 years of knowing each other, the longest we had ever spent apart was 4 months when he moved to South Africa for work before I could go join him. And we still talked almost everyday. So, somehow, it seems like it should be real, but it isn’t. I still wake up some mornings and want to roll over and touch him, or see something new and think I need to tell him about it, or have something wrong with the house and need his input on what to do.

Anyway - it’s all just hard, and I wish all of you strength and love to get through it. 💗
 
Approaching 5 months since I lost Paul. I miss him especially in the evenings and on week ends. During the weekdays it feels as if he is at work. Sometimes I feel like I am on a hiatus and the caregiving will begin again. I still feel like I am on guard that something will go wrong with the bi-pap. I don't know if I posted this but I am going with my son and DIL to see the play Wicked in Atlanta. So this will be a trip to the city. I would like to plan something for one night on Labor Day week-end. Maybe a trip to a bed and breakfast.

I went to the nail salon and they were playing 70's love songs. Tears came flooding out of my eyes. Those love songs were tough to listen to!

Kathy, I am picturing you sitting on the big porch of the hotel, enjoying some ice-tea and crocheting! Good for you!

Kljack16: The other day I heard a riddle: Who has the biggest hat? A doctor? A chef? or a hatmaker? I really wanted to share this riddle with Paul. I think he would have gotten the answer!
 
Thank you Mary2 💗 Love the riddle - Timothy would have enjoyed that too.

I hope your trips go well and you enjoy Wicked. (I would “react” to your post with a like or love, but I don’t seem to have that option 😳).
 
Today (July 17th) was the one year anniversary of my PALS passing. It seems impossible it has been a year. The lead up to today was really awful. For the last month, I have been constantly remembering everything that happened this time last year. Replaying each day, and all the hard moments. And I've been dreading and wondering how today would feel. But like many of the milestone days this year, the actual day wasn't as hard as I expected. I kept myself busy and spent time with my family. I think about my PALS all the time, so today really was no different from every other day. Except that I no longer had that feel of dread I've had for weeks.

I miss my PALS so much. I still can't figure out how I'm going to live the rest of my life without him. But I'm moving forward each day so I figure if I keep doing that, I'll figure things out eventually.
 
I'm sorry for the month of dread, Robin, but glad you got through less scathed than you thought. Not sure you ever figure the rest of your life out (well, I haven't, nine years in, anyway)...you just do it, maybe.

We're not promised tomorrow, so we can only do what we can with what we have today.
 
I’m so sorry Robin. I’m glad for you that it wasn’t “as awful” as you feared, and I’m glad you have your family around you.

I don’t know if we ever figure things out or understand why we are here instead of where we thought, planned, hoped, dreamed we would be. I guess we just have to keep going and pray that we find some peace knowing our PALS are no longer suffering and are with us in our hearts. 💔
 
Wednesday would have been our 20th anniversary. I really thought my PALS would make it but he didn't. I think he knew he was going even if I didn't, or didn't want to.

I had planned on taking myself out to dinner but just couldn't do it, so I made a nice dinner at home. Had a little cry and then tried to think of all the good things. I've been spending lots of time with friends, so that has helped.

I'm coming up on a year since he passed. I will be out of the country, having been invited by a friend on a trekking trip. Perhaps that is best. I can't believe I've been widowed nearly a year now. The thing I miss the most is his sense of humor, he always had a joke or tease in his mind. I still think of him cracking a smile, even under that damned bipap mask.

V
 
Anniversaries are so hard. I'm glad you will be doing something fun with friends. Doesn't it seem impossible that it has been a year? I love thinking about my husband and all the good times. I know that is what he would want me to do.
 
So glad you will be with good friends as this first year anniversary approaches. I still cry most days. Next September 2024 we have a wedding in MA. I have booked several nights at Acadia National Park in ME for after the wedding. We will ride electric bikes about 20 miles at the Park. I have started cycling at the gym and can do 7 difficult miles and 3 easy miles. Paul would be encouraging me to get stronger and do more! He was my best cheer leader!
 
V I am so sorry about the pain on your anniversary. I lost Brian end of Nov and our anniversary falls in Feb. My DS took me to dinner that night the first year. It was hard but a nice way for us both to remember him. I'm glad you had a good cry and then enjoyed your meal.
 
I have not been posting in a while. I hope you are all doing "okay". My way of dealing with grief is to do things. So, I have been busy cleaning, reorganizing, donating, tossing, etc. Believe it or not...I did very little housework the year Tom was ill with ALS. I did have "cleaners" come every other week, but that was it. Our office/my sewing room was a sea of papers that I just tossed there. I made sure the bills got paid and that was it. The guest room was not cleaned for months. No guests. And on. So, I have been focusing on getting things done that were on hold for a year.
I am just starting to do the things I did before ALS. I saw friends yesterday and we played mahjong. I will probably play bridge with friends in the fall. I will return to choir this week (I just have a choir voice, not soloist.) And there are a few other activities and events on the horizon. Other things I did before ALS I no longer do. TV watching. I have no interest in TV anymore. I read books. Some are stupid romances. Others have more literary merit. I am on a fb group that reads historical fiction and they always have good suggestions. I know I am in a complete slump when I read mail order bride books (ha, really lame).
I find that many people don't understand grief. So, I ignore many things that are said to me rather than get upset. Yesterday a friend said that "Alzheimer's is much worse than ALS". (me: ok. you have no idea what you are talking about and...it's not a competition). I said nothing.
I am minding the grandchildren about 3 or 4 days a week while my daughter works from home. I gave our daughter several books on bereavement. I started reading one. I think I made it to page 12 and put it aside.
If someone asks me how I am doing I just say "one day at a time", but the truth is, I have no idea how I am doing.
I think about you all every day. take care. Kathy
 
Tomswife, I'm glad you are starting to do some of the things you used to do before ALS. And never apologize for reading trashy books! They are such a great escape from real life! I have found it very hard to get back to the things I used to do. I just don't find anything as enjoyable as I used to. But I'm hoping that if I just keep doing what feels best every day, eventually I will feel like myself again. Wow, how did you not lose it when somebody turned grief into a competition! That is awful!

My project for the fall/winter is going to be getting our house in Portland ready to sell it in the spring. I immediately removed the medical/ALS related things after my husband died, otherwise, I haven't done much to deal with his things. I have moved to Seattle full-time, which has been a nice change. And I'm finally ready to let the Portland house go. It is too hard to be there without him. But I'm sure it is going to be very emotional to go through all of my husbands things. So many memories in that house. Some sad memories of course, but so many great memories as well.
 
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