Past CALS Rollcall

[rmt]

I find that I sometimes I want to give a quick update but it doesn't seem worth starting a new thread. And I miss hearing updates from the past CALS that were so helpful to me over the last several years. So I figured I'd start a "rollcall" thread for us past caregivers.

It has been over 7 months since my husband passed. His birthday last month was really hard. I still cry every day, not a lot, but each day there is something that reminds me of him and brings a tear to my eye. But I guess I'm lucky to have had something that is so hard to day goodbye to.

I'm going to visit my brother and his family for spring break. I love spending time with he and his wife and especially my nephews. They are 13 and 15 and are so fun.

 

[vltsra]

What a great idea, Robin. Thanks for starting this thread.

I'm not crying every day, just sometimes. I'm still taking the antidepressant so perhaps that's helping. I know my PALS' birthday in April will be hard. I do go and put flowers on his grave; frankly I'm glad he decided to be buried as it gives me a place to go and talk to him.

Good for you to be with family. Your nephews sound fun. It's good to be with people who love you.

My friends all know that I was an avid traveler before my husband's illness. I've been invited to do loads of things this year. Tomorrow I am headed all the way to Bali with a cycling friend and her husband. We are headed to Australia from there. I have been feeling the loss this past week, these were things I wanted to do with my husband. But I'm sure I will enjoy it all. And he will be with me in spirit.

V

 

[pittsburghgal]

My PALS 3 year anniversary is tomorrow ( actually Feb 29 because it was a leap year) , which always brings sadness as I relive the very difficult final weeks before his passing. I was so burned out from caring for him myself all those years that I truly felt that I didn't want to take care of anything ever again, but my daughter finally convinced me to get a dog. I got a Jack Russell Terrier puppy recently and it has been wonderful for me. I didn't realize how lonely I was.

 

[lgelb]

Great to see you, Sharon!

My cat and my work help keep me centered, for sure -- I'm glad for all of us who find joy in our respective animal companions.

 

[Mary2]

I am waiting to get accepted into a facebook bereavement group for former caregivers of ALS patients. I am also going to attend the local bereavement group the hospital has on Mondays. I am just not sure this second group will understand the care that goes into a late stage ALS patient. PALS couldn't get comfortable since at least Valentine's Day and had frequent requests. Any resources anyone knows about for bereavement would be appreciated.

In retrospect I wish I had taken more of our savings and hired more help sooner. I had increased the help for March but should have done so sooner. I was physically worn down and can see now the emotional toll was high as well. I tried to persevere through when it was time for more help.

I am extremely proud of my PALS. He learned the eye gaze and was very strong especially as he grew weaker.
I hope he knows I loved him. The caregiving tasks really did swallow up the companionship time. I miss him very much. My heart aches.

I can see I need more support now. My son who has been with me has been great. And friends have been in touch but my need to talk far outweighs what a normal social interaction can handle. I will have to seek help.
My friend texted me about a dental infection she has today instead of asking me how I was doing. She is ready to move on. For the sake of my friends and my son I need to move on.

 

[lgelb]

I don't think a few days is enough time to even think of "moving on" and wouldn't put that pressure on yourself, Mary.

Some days there will be standing still and others will be moving forward. Try not to get lost in "should have." Some is unavoidable, but at the end of the day, Paul knew how much you loved him and always will. And whatever you did or didn't do for yourself then, you will figure it out now.

 

[rmt]

Mary, you don't need to "move on". You need to take your time and do whatever feels right for you. For me, it took weeks or months before I thought much about anything other than my husband, how much I missed him, all the things I wish I'd done differently, all the legal and financial things that needed to be done, how would my life be without him.

People who haven't lost somebody close to them, don't understand how it feels and sometimes they don't know what to say, so they just talk about themselves. It was so odd to have people telling me about their minor inconveniences when I was going through something so big. I think they mostly didn't want to bring up my husband because they didn't want to upset me. Yeah, like I wasn't already thinking about him every second!

 

[Mary2]

Thank you RMT. I think I am having a bereavement crisis. I am not at peace over his passing. I feel physically terrible. I got very tired towards the end and said things to him I deeply regret. And then he started to decline and really wasn't able to focus on our relationship. I will try going to counseling, but I think they will minimize the things I said. I think I need to radically accept that I said those things and might have damaged our relationship. I need to radically accept this. I worked so hard to provide companionship time mixed in with caregiving, but in the end I was lonely and exhausted. I should have gotten more help sooner.

 

[Mary2]

I am at the airport about to return home to GA. The service and luncheon for Paul went well. I know returning to the house will be sad. A new phase of my life begins. I hope to Honor Paul by doing okay.

 

[rmt]

Going home after the service was so hard for me. I'll be thinking about you.

 

[lgelb]

It will be a difficult time, Mary. You don't have to look forward or back as yet. Just let yourself be.

 

[vltsra]

Thinking of you, Mary. It's hard at first. You will be okay.

 

[Mary2]

I texted my friend a short story of how Paul and I were on a train to NJ and he thought we had tickets to an opera at the MET. He loved opera. Some ladies on the train were also going to the MET and informed us that it was a ballet playing at the MET. Well we saw the ballet and loved it. My friend texted me back that her husband would jump off the train if he thought he needed to watch a ballet. And I realized how much I took Paul's love of symphony, opera, ballet and music in general for granted. And there was so much else I took for granted. I was one spoiled lady. I miss my husband.

 

[Narrowminded]

Mary please be gentle with yourself. I have been where you are now. Councelling will help immeasurably. However, if you don't click with the first one you try, try again. When one clicks it will be worth it's weight in gold. That said, give yourself time to grieve. I don't know how long you cared for your husband. I was in the trenches 14 years with Brian. Near the end you are tired. I could not get help. It was me and mostly my DS as my daughter was in college. I'm now 4 years and almost a half out. I still have days. My daughter is getting married later this year and it's going to be the most bittersweet day ever.

It does get better, it does get easier, but at 4 years, I still have days.

Sending huge hugs.

 

[Mary2]

Thank you Sue. I hope the wedding day is wonderful even if it is bittersweet! I am going to see a counselor because it is so different to be alone in the house. I hope to volunteer a little at a dog shelter to get out of the house. I hope this works out! I am still looking into it!