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My twin brother passed away last night at 9:30

Tlo57

Active member
Joined
Sep 16, 2017
Messages
46
Reason
Lost a loved one
Diagnosis
09/2017
Country
US
State
FL
City
Winter haven
My twin brother passed away last night at 9:30 or so in a nursing home in Tn. The last time I saw him was about a year ago. He was rushed to ER, had to be intubated and then put on a ventilator. He was then transferred to specialty hospital for 30 days which is where I saw him last. I spent a few days there visiting. I’ll never forget him crying and telling his wife he wanted to go home and didn’t want to go to nursing home. That had to be the most intense emotional pain I’ve ever experienced. He’s a vet so he got tons of financial support. His wife didn’t want him to come home because she didn’t think she could care for him, so he was sent to a nursing home in Crossville. I offered to give up my apt and relocate to Tn to help because he would need 2 ppl 24/7 due to the vent. I was very angry with the decision, but I understand I guess? He’s been alone for a year since COVID, unable to have visits, but we spoke daily. He was sent to hospital about a month ago due to testing positive for covid. He was somewhat confused lately and irritated. I finally got permission to visit for 30 minute intervals by appt. I booked the hotel, planned on making the 10 hr drive through the night to visit tomorrow and Friday. I just got a new phone and accidentally deleted the old phones contents. He was having difficulty hearing me on the previous phone. I rec’d a message of condolence from a childhood friend today. I was really confused so called my brother’s wife. He passed away last night. No one could reach me because they were sending messages and calling the old phone that unfortunately wasn’t charged. I discovered today that he attempted to reach me 3x’s yesterday and left messages on my old phone. All he kept saying was “Siri call Tina” and rather than Sri dialing the new number, it kept dialing the previous number. I missed the last opportunity to talk to him. He said he didn’t think he would make it to Thursday and I told him that was nonsense. Our mother passed away a couple of months ago causing him to be severely distraught. I couldn’t go to the funeral because I was suffering with COVID. The nurse said he had been calling out for my mother these last few days and his wife said that he kept seeing both of our parents who are deceased. I can’t believe that I missed his calls and that I was a day late seeing him. The nurse said at 9pm yesterday he wanted to get out of bed and sit in a chair, since it was late she wouldn’t allow it. He called me a few days ago and said that they had him in another room strapped in like a caged animal. Of course I called the nurse who said it wasn’t true. According to her, he kept swinging his legs to get out of bed, but since being completely paralyzed he was very frustrated. All he had left was limited mobility in right hand. He also called respiratory and told them to come and remove him from vent. She said 20 minutes after calming him down, a tech was going from room to room and noticed he was very pale. At that point the nurse said he had no vitals. I asked if it was peaceful & she responded yes, but I guess I’ll never know because he was alone and there weren’t any witnesses. She said his oxygen levels were good so this came as a huge surprise. She also said he knew how to get their attention if something was wrong. I’m very sad and don’t want to torture myself with the idea of him suffering. I thought I would be inconsolable because we are twins and we’re very close, but I think because I was somewhat prepared and I’ve been grieving since he was diagnosed in 2017, I’m keeping it together. There were times when I couldn’t even talk about him without sobbing uncontrollably. I’m very sad and don’t understand why I missed his last call and why he passed away the day before I was finally given permission to visit?
 

ShiftKicker

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Joined
Mar 16, 2015
Messages
3,718
Reason
DX UMND/PLS
Diagnosis
06/2015
Country
CA
State
BC
City
Vancouver
I am so sorry for your loss. And I am so sorry for your pain and regrets and the communication problems. There are likely no words to sooth or reduce the weight of your grief, but know you have my sympathy and empathy. Things don't always end in a way that allows us to move on easily, nor give us a sense of peace right away. I hope you are able to understand that you did the absolute best you could to be connected to your brother despite the miles and that covid created an insurmountable barrier this past year.
 

Tlo57

Active member
Joined
Sep 16, 2017
Messages
46
Reason
Lost a loved one
Diagnosis
09/2017
Country
US
State
FL
City
Winter haven
Thank you for your kind words. Your response was very comforting. I’m just so sad that I missed his calls. He tried calling 3x’s. I can’t help thinking, what if he was scared or needed me? What if he just wanted to make certain that I was coming? I asked the nurse to reinforce the fact that I would be there and was staying overnight. What if he was scared before he passed away and that’s why he wanted to get out of bed and sit in the chair. I said I wasn’t going to torture myself, but here I go with the what if’s? It’s bad enough that he was diagnosed with ALS, but then to be all alone for the past year because of Covid made it more heartbreaking! I’ve spent the last year angry and resentful towards his wife for not bringing him home. In fact, he would lose his temper with me whenever I voiced my hostility because he really loved her. She texted me today and said that she loved him as well. I have to respect her decision. I don’t think he would want me to be vindictive towards her, so I’ve offered to assist her with applying for VA survivors benefits. I think that would have made him very happy. She appreciates the help and it’s a positive step in the right direction. Thank you again for your understanding!
 

lgelb

Moderator
Forum Supporter
Joined
Nov 5, 2009
Messages
9,606
Reason
Lost a loved one
Diagnosis
00/0000
Country
US
State
WA
City
Seattle
I'm so sorry, Tina. You're right -- he would be very happy that you and his widow are working together to make things better for her. He knew how much you loved him and he would never have thought otherwise for a moment.

Best,
Laurie
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
10,028
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
I am so sorry. You did your best and he knew you loved him. My sister died suddenly just before I was supposed to visit her so I do have some understanding. Wishing you peace
 

KimT

Extremely helpful member
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Joined
Nov 18, 2014
Messages
4,143
Reason
PALS
Diagnosis
08/2015
Country
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State
South
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I'm so sorry. Hold onto that he always loved you. I wish I had words of comfort but you're doing him an honor helping his wife. It shows how deep your love goes.
 

Bestfriends14

Very helpful member
Forum Supporter
Joined
May 7, 2017
Messages
1,091
Reason
CALS
Diagnosis
05/2017
Country
CA
State
AB
City
CALGARY
Oh, Tina, I'm so very sorry for your pain and the way you found out about your brother's passing. Thankfully, he is no longer suffering and his body is at rest. Hugs to you, Tina. My deepest condolences to you and your family.
 

Wilson2009

Distinguished member
Joined
May 4, 2017
Messages
231
Reason
PALS
Diagnosis
01/2017
Country
US
State
KS
City
Lenexa
So sorry for your loss.
 

affected

Guru status reached
Joined
Apr 26, 2013
Messages
12,916
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
AU
City
lala land
my sincere condolences on your loss 💜
 

Jrzygrl

Senior member
Joined
Feb 14, 2017
Messages
670
Reason
Lost a loved one
Diagnosis
08/2014
Country
US
State
NJ
City
X
I'm so sorry for your loss. Please try not to wrack yourself with guilt. You were doing your best in an impossibly tough situation. I'm sure your brother knew you loved him. He us at peace now. I hope you too can find peace as you move forward.
 

JimInVA

Senior member
Forum Supporter
Joined
May 29, 2014
Messages
882
Reason
Lost a loved one
Diagnosis
04/2014
Country
US
State
VA
City
Poquoson
I'm sorry for the loss of your brother... and particularly considering the circumstances. I'm quite sure that he knew how much you loved him. Perhaps, he simply wanted one last time to say "I love you, too!" and to thank you for the daily calls you made to keep connected. I hope you are able to find peace in your own way and in your own time.

My very best to you...

Jim
 

IslandL8dy

Member
Forum Supporter
Joined
Mar 6, 2021
Messages
19
Reason
DX MND
Diagnosis
03/2021
Country
US
State
TX
City
Houston
Please try to avoid thinking about the technical and logistical confusion that happened. That’s the road to madness, and it’ll just add to your suffering. You don’t need that. What you do need is breathing space to grieve your loss and commune with family. You love your brother and he loved you. I am so, so sorry.
 
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beauty4everyone

Distinguished member
Joined
Jul 5, 2018
Messages
245
Reason
PALS
Diagnosis
04/2018
Country
US
State
GA
City
Someplace
Although you were not physically present you were there in spirit, holding him close in your love for him. That love never ends, nor shared memories of the special bond you shared.
....."whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable—if anything is excellent or praiseworthy—think about such things." He is at peace.
1617294775215.jpeg
B.
 

Clearwater AL

Very helpful member
Joined
Aug 28, 2013
Messages
1,937
Reason
PALS
Diagnosis
12/2016
Country
US
State
NC
City
Central NC
Tlo, the love for your twin brother is and was real.

"Nothing real can be threatened. Nothing unreal exists. Herein lies the peace of God."

From... - A Course in Miracles.
 
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