cb81042
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- 10
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- Lost a loved one
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- 05/2023
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I haven’t posted much on the forums because it took forever to get a proper diagnosis for my PALS. Symptoms were concerning enough to see a doctor in March 2022, but it took until May 2023 to get the official ALS diagnosis. His form of ALS was aggressively fast, though he managed to stay relatively physically independent until the very end.
It’s surreal that his body is gone, but it is also freeing. My PALS also had FTD symptoms that accompanied the ALS and I spent almost two years watching the man I love lose his ability to speak, work, and think before his body gave out too. I feel like I did a lot of the grieving along the way - by the time he passed, he was just a man who resembled the man I married. So many of the things that drew me to him 10 years ago were taken away by ALS/FTD. While I was not much of a physical caregiver, I shouldered all of the load of making household decisions, planning, shopping, budgeting, driving, managing appointments…..it was mentally exhausting to be in survival mode while my husband refused every service and adaptive device that was offered.
I feel like I am waiting for a bigger wave of debilitating grief to hit — I was sad when he was obviously declining, but my overwhelming emotion when he passed was relief and peace. The suffering ended for both of us when he finally took his last breath.
It has been challenging to not really fit in with any of the established groups - without the diagnosis, we had nowhere to go. With the diagnosis, he was choosing a path that was atypical (refusing all treatments and assistive devices). I don’t know if this is the right spot, but I’m craving conversations with others who get it. My support system is amazing, but very few truly understand the hell that was experienced during these last 2 years.
It’s surreal that his body is gone, but it is also freeing. My PALS also had FTD symptoms that accompanied the ALS and I spent almost two years watching the man I love lose his ability to speak, work, and think before his body gave out too. I feel like I did a lot of the grieving along the way - by the time he passed, he was just a man who resembled the man I married. So many of the things that drew me to him 10 years ago were taken away by ALS/FTD. While I was not much of a physical caregiver, I shouldered all of the load of making household decisions, planning, shopping, budgeting, driving, managing appointments…..it was mentally exhausting to be in survival mode while my husband refused every service and adaptive device that was offered.
I feel like I am waiting for a bigger wave of debilitating grief to hit — I was sad when he was obviously declining, but my overwhelming emotion when he passed was relief and peace. The suffering ended for both of us when he finally took his last breath.
It has been challenging to not really fit in with any of the established groups - without the diagnosis, we had nowhere to go. With the diagnosis, he was choosing a path that was atypical (refusing all treatments and assistive devices). I don’t know if this is the right spot, but I’m craving conversations with others who get it. My support system is amazing, but very few truly understand the hell that was experienced during these last 2 years.
rmt
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- 07/2019
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cb81042, I had a similar path as you. My PALS had FTD too, and didn't want to use adaptive devices. He was mobile (or at least mostly mobile) up until close to the end, which was terrifying since he didn't make good decisions about what was safe for him. You are correct, nobody really understands what we went through except the people in this forum. I find the support here to be so helpful.
I always made a photo calendar of pictures of my husband and I. It was one of my favorite things. After he passed in (July 2022), I wasn't sure what I wanted to do going forward. Last year, I made a calendar with pictures of my husband from when he was healthy and happy. It was emotionally exhausting to put together, but I enjoyed having it all year! So I decided to do it again this year. I spent the afternoon looking through old pictures and thinking about how much I love him and how much fun we had together. There were lots of tears but I'm very happy I did it. The calendar is ordered and I can't wait to enjoy it all next year. I don't know how many more years I will make a calendar like this, but I suppose I will know when it is time to stop. I miss him so much.
I always made a photo calendar of pictures of my husband and I. It was one of my favorite things. After he passed in (July 2022), I wasn't sure what I wanted to do going forward. Last year, I made a calendar with pictures of my husband from when he was healthy and happy. It was emotionally exhausting to put together, but I enjoyed having it all year! So I decided to do it again this year. I spent the afternoon looking through old pictures and thinking about how much I love him and how much fun we had together. There were lots of tears but I'm very happy I did it. The calendar is ordered and I can't wait to enjoy it all next year. I don't know how many more years I will make a calendar like this, but I suppose I will know when it is time to stop. I miss him so much.
Mary2
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- 04/2021
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Hi CB81042, I had well meaning friends and supportive church people but I don't believe anyone knew our routine or understood the stress I felt whenever I left the house. My husband had symptoms from before 2016. In 2016 he had back surgery. In 2018 he was diagnosed at a major teaching hospital with peripheral neuropathy. An EMG did not show ALS. We did several years of Antibody Infusions. So we had nursing coming into the house for these infusions starting in 2018.
In July 2020 he finally fell and never walked again. We began household help only to stop this in October for fear of Covid. In April 2021 a second EMG revealed ALS and by this time my husband was losing weight and short of breath. He went immediately on bi-pap. Meanwhile we were vaccinated and began household help again. Once we had the ALS diagnosis I joined this forum and the ALS Association began to call us. Suddenly we were better supported and our situation better understood.
Still the next 2 years were grueling. I had regular caregivers but was mostly isolated. People didn't want the intimate details of the care.
Maybe we should have done Hospice sooner, but until the very end I didn't want this because I wanted him to treat a pneumonia if one occurred.
Even today, I participate in an ALS caregiver support group on Facebook and one on zoom through the ALS Association. I don't have the energy to support people who lost loved ones to something other than ALS. I benefit most from receiving support from those who know all we went through without having to explain it all.
Many people would not go back to the ALS days with their husband. But I would. I miss our afternoons together watching movies or listening to audio books. Now that he is gone I find I would rather be in the living room with him doing these things then any activity outside the house. A part of my zest for living and joy died when he died. I am making a scrap book about him for future grandchildren.
In July 2020 he finally fell and never walked again. We began household help only to stop this in October for fear of Covid. In April 2021 a second EMG revealed ALS and by this time my husband was losing weight and short of breath. He went immediately on bi-pap. Meanwhile we were vaccinated and began household help again. Once we had the ALS diagnosis I joined this forum and the ALS Association began to call us. Suddenly we were better supported and our situation better understood.
Still the next 2 years were grueling. I had regular caregivers but was mostly isolated. People didn't want the intimate details of the care.
Maybe we should have done Hospice sooner, but until the very end I didn't want this because I wanted him to treat a pneumonia if one occurred.
Even today, I participate in an ALS caregiver support group on Facebook and one on zoom through the ALS Association. I don't have the energy to support people who lost loved ones to something other than ALS. I benefit most from receiving support from those who know all we went through without having to explain it all.
Many people would not go back to the ALS days with their husband. But I would. I miss our afternoons together watching movies or listening to audio books. Now that he is gone I find I would rather be in the living room with him doing these things then any activity outside the house. A part of my zest for living and joy died when he died. I am making a scrap book about him for future grandchildren.
rmt
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Mary, I would go back to the early ALS days too. I miss having him with me. Of course, I'd rather go back to the healthy days, but other than the final year, my husband was still himself and there were many good moments. There were still some good moments in the last year, but the my husband was no longer himself due to the FTD. Honestly, I try not to even remember him in the final year. He wouldn't want me to think of him like that.
And I think a big part of my spark died with him. I wonder if it will ever come back.
And I think a big part of my spark died with him. I wonder if it will ever come back.
MJT
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cb81042, Marnes77, and DoingMyBest, I am sending love and hope that you can discover moments of peace. I don't remember the first few weeks or even months. Friday marks 6 months since Jeff died.
Tomswife
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- Aug 22, 2022
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- 08/2022
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- Livingston
Mary2. I love your post about 2023 goals. I burst out laughing, understanding the absurdity. I was homebound for 9 months, and even hired a dogwalker because I was afraid to leave Tom. I was also often operating on little sleep.
What I am doing now is - church bereavement group. It is helpful. Everyone at a different point. CALS Widows on fb. I walk the dog 2x day. Mind grandchildren 3 days a week. In a beginner pickleball clinic once a week. I returned to church choir.
And workout at the gym most days. I have lost 5 lbs in 2 months which is good for me since I could walk to the moon and not lose weight.
So my primary focus has been fitness.
I have been going to concerts and plays alone. Sometimes with ladies.
I have planned 2 trips to Europe in 2024, alone with Viking.
I have other educational goals for 2024. Still thinking about those.
I hope everone is doing ok. One step at a time. I miss Tom very much. There is joy to be found in each day, and the sadness is always present. Its emotionally exhausting to be in grief.
Kathy
What I am doing now is - church bereavement group. It is helpful. Everyone at a different point. CALS Widows on fb. I walk the dog 2x day. Mind grandchildren 3 days a week. In a beginner pickleball clinic once a week. I returned to church choir.
And workout at the gym most days. I have lost 5 lbs in 2 months which is good for me since I could walk to the moon and not lose weight.
So my primary focus has been fitness.
I have been going to concerts and plays alone. Sometimes with ladies.
I have planned 2 trips to Europe in 2024, alone with Viking.
I have other educational goals for 2024. Still thinking about those.
I hope everone is doing ok. One step at a time. I miss Tom very much. There is joy to be found in each day, and the sadness is always present. Its emotionally exhausting to be in grief.
Kathy
- Joined
- Jan 3, 2023
- Messages
- 63
- Reason
- Lost a loved one
- Diagnosis
- 01/2023
- Country
- IE
Hi everyone. My PALs was six weeks gone last Saturday. He took the off ramp in the end (I always knew it would go that way - a horrible shroud to live under for 10 months since his DX last Jan, in secrecy). He was terrified of being locked in. And had begun to decline more rapidly over the summer. Falls. Speech starting to slur. Starting to choke on food. Then came the wheelchair. The final straw. He could still get around with a cane for very short distances. But anything more and he needed the chair.
What was as bad if not worse as his physical decline was his perpetual psychological torment and agitation. He just hated losing his independence. And was constantly grappling with the prospect of the off ramp. When. How. Etc.
It was utterly horrific to watch on helplessly and try to stay somewhat sane myself. In the end I didn't. We both psychologically unravelled somewhat. Impossible not to with that hanging over you. Nevermind the rigours of caregiving and family politics etc. Which got downright nasty in the end. His family. Not mine. Horrible people.
I won't get into details of the off ramp publicly. But it was peaceful. Surviving the grief and trauma, however, is not peaceful. I'm a wreck.
He went 3 days before his 56th birthday. Just too damn young. I have his gift. Still in its wrapping.
The service wasn't nice and didn't honour his wishes. Toxic family and friends took control in the end. It was so "un-him". That's a whole other story.
The holiday season is exceptionally challenging. If I could, I'd crawl under a rock until it passes. But that ain't gonna happen with an 11 year old.
Still off work. That's the next hurdle. In no way fit yet. Money is an issue for me unfortunately. So I will have to go back soon. Gonna try draw it out for at least another 2/3 months though while I try to steady my ship. Or should I say retrieve its sunken wreck from the bottom of the ocean.
The grief is unbearable. Life is joyless. Literally clawing through each day. Self care etc. gone to shit. RMT - like you, my spark died with him. It died the day I realised he had ALS last December. Before that it was at its brightest.
At 46, I feel too young for this. Dread a life of grief, joylessness and hopelessness. Obviously I take joy in my daughter. But that's different. Besides. She's growing up fast and spends time with her dad. I am often home alone now. Can't face the outside world or most people. Even the good ones. Just too grief stricken and traumatised. Basically reclusive.
Also exhausted. Partly from the sheer drain and horror of the past year. Also just grief itself. I had no idea it would be so physically exhausting. On a good day, I manage a shower. But there are no good days. So basically I stink.
I function and fake it for my daughter. That's as good as it gets.
I hope this is not it for my life now. I see friends and family thriving. Meanwhile I am barely surviving. A bitter pill to swallow when I've always worked hard etc. And when we had such a bright future ahead.
Life's a bitch.
Sorry I am not more positive. Just speaking my truth.
Love to you all. Hope you are doing better than me.
Xxx
What was as bad if not worse as his physical decline was his perpetual psychological torment and agitation. He just hated losing his independence. And was constantly grappling with the prospect of the off ramp. When. How. Etc.
It was utterly horrific to watch on helplessly and try to stay somewhat sane myself. In the end I didn't. We both psychologically unravelled somewhat. Impossible not to with that hanging over you. Nevermind the rigours of caregiving and family politics etc. Which got downright nasty in the end. His family. Not mine. Horrible people.
I won't get into details of the off ramp publicly. But it was peaceful. Surviving the grief and trauma, however, is not peaceful. I'm a wreck.
He went 3 days before his 56th birthday. Just too damn young. I have his gift. Still in its wrapping.
The service wasn't nice and didn't honour his wishes. Toxic family and friends took control in the end. It was so "un-him". That's a whole other story.
The holiday season is exceptionally challenging. If I could, I'd crawl under a rock until it passes. But that ain't gonna happen with an 11 year old.
Still off work. That's the next hurdle. In no way fit yet. Money is an issue for me unfortunately. So I will have to go back soon. Gonna try draw it out for at least another 2/3 months though while I try to steady my ship. Or should I say retrieve its sunken wreck from the bottom of the ocean.
The grief is unbearable. Life is joyless. Literally clawing through each day. Self care etc. gone to shit. RMT - like you, my spark died with him. It died the day I realised he had ALS last December. Before that it was at its brightest.
At 46, I feel too young for this. Dread a life of grief, joylessness and hopelessness. Obviously I take joy in my daughter. But that's different. Besides. She's growing up fast and spends time with her dad. I am often home alone now. Can't face the outside world or most people. Even the good ones. Just too grief stricken and traumatised. Basically reclusive.
Also exhausted. Partly from the sheer drain and horror of the past year. Also just grief itself. I had no idea it would be so physically exhausting. On a good day, I manage a shower. But there are no good days. So basically I stink.
I function and fake it for my daughter. That's as good as it gets.
I hope this is not it for my life now. I see friends and family thriving. Meanwhile I am barely surviving. A bitter pill to swallow when I've always worked hard etc. And when we had such a bright future ahead.
Life's a bitch.
Sorry I am not more positive. Just speaking my truth.
Love to you all. Hope you are doing better than me.
Xxx
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rmt
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@Marnes77 - Be patient with yourself. This is a marathon, not a sprint. And it is so hard.
The first 6 weeks after my PALS death are a blur. I cried all the time. I was exhausted but I couldn't sleep. I was in a total fog. I couldn't imagine life without my husband. I had to take things minute by minute just to make it through the day, and it felt like there were a million things to take care of. But slowly, life got a little easier. I still cried a lot, but I started to come out of the fog. It took months before I felt even a little bit like my old self. I'm certainly not the same person I was before, and I never will be, but the "new me" is doing OK now.
I still cry sometimes when I think about my husband and the life we were robbed of. But I also smile and laugh when I think about the great life we had. It has been almost 1.5 years now, and I'm starting to make a new life for myself. I'm doing hot pilates classes and joining a community orchestra. I'm starting to look forward to seeing old friends. I think my husband would be happy I'm moving forward, and I take him with me in everything I do.
I'm so sorry his family hijacked things. Every time my PALS's family did something that I knew he would have hated, I smiled because I knew he was looking down, shaking his head and laughing.
I'm glad your PALS was able to make decisions about how his journey would end. And that you were there to support him. What you did for him was amazing.
Please know that we are all here to support you. Things will get better. Give yourself time and grace. I wish I would have gone to a therapist (or somebody like that) in the weeks and months after my PALS death. Having a non-family/non-friend to talk to probably would have helped me process all of the trauma and grief better.
The first 6 weeks after my PALS death are a blur. I cried all the time. I was exhausted but I couldn't sleep. I was in a total fog. I couldn't imagine life without my husband. I had to take things minute by minute just to make it through the day, and it felt like there were a million things to take care of. But slowly, life got a little easier. I still cried a lot, but I started to come out of the fog. It took months before I felt even a little bit like my old self. I'm certainly not the same person I was before, and I never will be, but the "new me" is doing OK now.
I still cry sometimes when I think about my husband and the life we were robbed of. But I also smile and laugh when I think about the great life we had. It has been almost 1.5 years now, and I'm starting to make a new life for myself. I'm doing hot pilates classes and joining a community orchestra. I'm starting to look forward to seeing old friends. I think my husband would be happy I'm moving forward, and I take him with me in everything I do.
I'm so sorry his family hijacked things. Every time my PALS's family did something that I knew he would have hated, I smiled because I knew he was looking down, shaking his head and laughing.
I'm glad your PALS was able to make decisions about how his journey would end. And that you were there to support him. What you did for him was amazing.
Please know that we are all here to support you. Things will get better. Give yourself time and grace. I wish I would have gone to a therapist (or somebody like that) in the weeks and months after my PALS death. Having a non-family/non-friend to talk to probably would have helped me process all of the trauma and grief better.
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Marnes, rmt pretty much said it all. Even if you grab a coffee and take your own walk in the park, you're out and about without walls.
I never did therapy, ADs, and whatnot, but if they seem attractive, they're probably a good idea at least to try.
We are here for you, whenever, whatever.
rmt, the hot Pilates and orchestra sounds great!
Kathy, you have a lot going on. You are right -- there is joy in each day, and it takes less time to find it as we go.
I never did therapy, ADs, and whatnot, but if they seem attractive, they're probably a good idea at least to try.
We are here for you, whenever, whatever.
rmt, the hot Pilates and orchestra sounds great!
Kathy, you have a lot going on. You are right -- there is joy in each day, and it takes less time to find it as we go.
- Joined
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- 01/2023
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- IE
Thanks guys.
It's encouraging to hear you are making progress RMT. I have done a lot of reading about grief. And get scared when the vast majority of partner loss stories say it can get worse over years and years.
I can say with certainty that I will grieve him and our lost future as long as I live. As he was and always will be the love of my life. Nobody ever has or ever could come close. He was absolutely one of a kind on so many levels. He even got an obituary in a famous broadsheet newspaper over here. A fitting and well deserved tribute to the rarest and finest of men, taken far too soon just three days before he was due to turn 56. With so much left in him. And us. As he said to me sorrowfully not long before he died: "We had so many songs left to sing my love."
Everybody loved him (his service was HUGE - so popular and loved and respected), and women threw themselves at him. But he chose me. And it was an honour to love and be loved by someone so special. Yet also a curse, in some ways. The sheer tragedy of it. Cut so short. So traumatically.
I'll never get over him. I just hope I can find joy again. Because now, everything is joyless. As he would say, it's like somebody just turned all the lights out.
Trying to give myself time and grace. My physical health has taken an awful battering. Exhaustion of the whole year and just not looking after myself properly. Since he got sick and especially since he died I have lived on junk and wine and not exercised. I used to be so fit and far more clean living. Covered head to toe in psoriasis. So the first step is to try to recover my physical health. Because this lack of self care worsens the also battered emotional/psychological health. You get locked in a vicious circle then. I was diagnosed as clinically depressed reactive to the grief and trauma. I am not sure if it's just grief or illness or both. But I'm taking the meds and doing the therapy. My counsellor is retiring though. Will miss her guidance. She really got me and it. All the complexities and intricacies.
Just finding it really hard to kick start myself on the physical health and self care thing. Barely even shower. Used to be so well groomed. I feel a total ruin to be quite honest. And only this time last year I was at my best in every way. Of course ALS was already worming its evil way through him by then. But I had no idea. Blissful ignorance. I think he was starting to have major concerns though, the poor thing.
Anyway. It's only six weeks since he passed and the last few weeks with the horrifying run-up to the off ramp (he was so agitated but so brave in the end), toxic family bs and then the dishonouring at the service was more trauma on trauma. How does anyone come out of something so horrific and not be ruined? Hopefully I will get there.
It's really the most horrible disease.
And I love and miss him so much.
Lots of love to you all. And thanks as ever for the advice and support.
❤
It's encouraging to hear you are making progress RMT. I have done a lot of reading about grief. And get scared when the vast majority of partner loss stories say it can get worse over years and years.
I can say with certainty that I will grieve him and our lost future as long as I live. As he was and always will be the love of my life. Nobody ever has or ever could come close. He was absolutely one of a kind on so many levels. He even got an obituary in a famous broadsheet newspaper over here. A fitting and well deserved tribute to the rarest and finest of men, taken far too soon just three days before he was due to turn 56. With so much left in him. And us. As he said to me sorrowfully not long before he died: "We had so many songs left to sing my love."
Everybody loved him (his service was HUGE - so popular and loved and respected), and women threw themselves at him. But he chose me. And it was an honour to love and be loved by someone so special. Yet also a curse, in some ways. The sheer tragedy of it. Cut so short. So traumatically.
I'll never get over him. I just hope I can find joy again. Because now, everything is joyless. As he would say, it's like somebody just turned all the lights out.
Trying to give myself time and grace. My physical health has taken an awful battering. Exhaustion of the whole year and just not looking after myself properly. Since he got sick and especially since he died I have lived on junk and wine and not exercised. I used to be so fit and far more clean living. Covered head to toe in psoriasis. So the first step is to try to recover my physical health. Because this lack of self care worsens the also battered emotional/psychological health. You get locked in a vicious circle then. I was diagnosed as clinically depressed reactive to the grief and trauma. I am not sure if it's just grief or illness or both. But I'm taking the meds and doing the therapy. My counsellor is retiring though. Will miss her guidance. She really got me and it. All the complexities and intricacies.
Just finding it really hard to kick start myself on the physical health and self care thing. Barely even shower. Used to be so well groomed. I feel a total ruin to be quite honest. And only this time last year I was at my best in every way. Of course ALS was already worming its evil way through him by then. But I had no idea. Blissful ignorance. I think he was starting to have major concerns though, the poor thing.
Anyway. It's only six weeks since he passed and the last few weeks with the horrifying run-up to the off ramp (he was so agitated but so brave in the end), toxic family bs and then the dishonouring at the service was more trauma on trauma. How does anyone come out of something so horrific and not be ruined? Hopefully I will get there.
It's really the most horrible disease.
And I love and miss him so much.
Lots of love to you all. And thanks as ever for the advice and support.
❤
Mary2
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- 04/2021
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Wow! Marnes your partner was a terrific man! Service oriented and romantic enough to say "my love"! These are very early days...even for me 9+ months out. We are still able to find ways to honor our partners and to open ourselves up to their forever love. I believe time heals. We will be forever changed and may have lost some spark. And yes there will always be grief. But we will pick up the pieces. Many older people lose their mates and then their health fails and their world becomes smaller. They are unable to put new pieces together. But you are reaching out to a world wide forum, have your daughter and hopefully will see her find a vocation, maybe marry and with some luck maybe have grandchildren.
I stopped showering. I bathe with soap I love and indulge in a facial soap I love. Sometimes I only bathe 2 minutes. Other times I rest and ponder all that we went through. Wine makes me sad and makes me ruminate. I am hooked on ice-coffee. I want to do everything to have some energy....even if it is caffeine driven.
I hope the meds help and that you find a great new therapist. I am thinking of you during these initial dark days where hopefully a sunbeam of light will find its way through to you and your family.
And Christmas...do people go to the movies on Christmas there? It is very popular where I live. It might be easier than trying to socialize.
Wishing you the very best.
I stopped showering. I bathe with soap I love and indulge in a facial soap I love. Sometimes I only bathe 2 minutes. Other times I rest and ponder all that we went through. Wine makes me sad and makes me ruminate. I am hooked on ice-coffee. I want to do everything to have some energy....even if it is caffeine driven.
I hope the meds help and that you find a great new therapist. I am thinking of you during these initial dark days where hopefully a sunbeam of light will find its way through to you and your family.
And Christmas...do people go to the movies on Christmas there? It is very popular where I live. It might be easier than trying to socialize.
Wishing you the very best.
Tomswife
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I found I was able to focus on my own wellbeing. In month 4. I joined local group personal training. It got me going. Now I let go of that expense and go to crunch for $25 a month.
I have also given up my daily glass of wine. The daily exercise has made letting go of the wine easier.
I went to our condo timeshare in Florida, in November. My brother was also visiting with his wife. We were out at a restaurant. Waitress brings me 2 beer mugs instead of one. I asked her to take it away. She said no, just leave it. I stared at the second beer. Oh. That's Tom's beer. Let's toast Tom!
Peace to you all.
We want to heal, but not if it means we will forget them.
I have also given up my daily glass of wine. The daily exercise has made letting go of the wine easier.
I went to our condo timeshare in Florida, in November. My brother was also visiting with his wife. We were out at a restaurant. Waitress brings me 2 beer mugs instead of one. I asked her to take it away. She said no, just leave it. I stared at the second beer. Oh. That's Tom's beer. Let's toast Tom!
Peace to you all.
We want to heal, but not if it means we will forget them.
