Grateful to all on this forum

MarcyWis

 My beloved DH, husband of 54 years, partner in so many happy memories and the love of my life, passed away last night after his battle with Lewy Body.

I am not good at writing and participating in these types of things, but I read every day the experiences and tips that so many of you so generously and eloquently shared.  I think you may have saved my life, and helped me to care for him much longer than I would otherwise have been able to, as we dealt with almost exactly all of the problems you discussed, and it was a comfort to feel that I was not alone.

He was diagnosed in 2018, but looking back there were signs for many years before that.  I was able to care for him until this last December when he became more physical in rejecting my help with bowel incontinence.  We live in a rural area where there is no help available, so after a 2 week hospitalization for another problem, I had to let them place him in a nursing home.  The only available bed was 180 miles away, which was heartbreaking, but it fortunately turned out to be a lovely place with wonderful people working there.  He was immediately placed in Hospice, and with their extra compassionate care I felt more comfortable with the situation.  I was only able to visit once a week, but the Hospice and other staff kept me updated at all times.  They called me when the time was getting close and I was able to stay in a hotel there to be with him his last few days.

It breaks my heart (for the 1000th time) that I was not there when he passed.  The nurses that examined him yesterday thought that it would be a few more days yet, so I went to the hotel to try to get some sleep, thinking that I might have a couple of tough days coming up.  But I got the call an hour after going to bed that he had passed.  They said he passed quietly in his sleep, just stopped breathing.  I was at least glad that I had spent the last 3 days with him, holding his hand and telling him that I loved him, that we all loved him, and that it was alright for him to let go.

Our children and grandchildren are all out of state so this has been very difficult for them.  They've been wonderful though in visiting  and being in touch every day.  After pulling myself together after getting the call, and called them, we were all up all night talking and messaging.  They also were responsible for helping me get through this.

Sorry this is so long, it just started pouring out.  I just really wanted to thank everyone in this forum for the help and support I've gotten from you. And to wish you all the courage and strength and support that you all need to battle this horrible, cruel disease.

Thank you, thank you, thank you.

Ed1937

Marcy, I'm sorry for your loss. It sounds as if he passed easily in hospice, and that's about all we can hope for. 

Thank you for giving the great people of the forum recognition for their input. I'm glad it was helpful for you. You're welcome to come back whenever you feel like it. We'll be here to try to help if we can.

Quilting brings calm

Marcy - I’m sorry for your family’s loss.  Please do not feel sad or guilty for not being there at the moment of your spouse’s passing.  My uncle had terminal cancer, was at home when he died.  My aunt and cousin had worn themselves out those last few days.  Cousin went to bed while aunt was in the same room as my uncle.  She fell asleep for just a few moments and woke up to find he had passed.  You could have been right next to your husband, awake, looked away for just a moment and still not caught the exact moment.  It’s been said that some patients seem to wait on purpose until they are alone to die.  My FIL died in his sleep next to my MIL.  She only knew immediately because he was on a monitor and the alarm  went off.  We didn’t know he was dying anytime soon from his emphysema, but the hospital ER must have.  They sent him home with the monitor.

M1

Marcy thank you so much for posting, and for sharing your story.  I'm so sorry for your pain and loss, but glad for you and your husband that the difficult path is over.  We had a SIL die of Lewy Body about a year ago, not diagnosed until her last hospitalization.  

May you find peace and comfort in the days ahead.

Buggsroo

Marcy, 

I am so sorry for your loss. It sounds like he had a peaceful passing and I agree with the others that he may have waited until you were not in the room. 

This happened to my mother when my dad was in care. She was at the home but had to get some things at the house. He passed after she had left. Judging from his facial expression, he died peacefully. 

I hope you ease gently into your new life, it sounds like you have a very supportive family. Hugs your way.

David J

Marcy, I am sorry for your loss. A peaceful passing is a blessing.

LadyTexan

Dear Marcy,

I am so very sorry for your loss. It sounds like his passing was peaceful and that is a blessing.

May God be with you and your loved ones. May He comfort you and bring you peace.

Please be gentle with yourself. Know that you are loved.

-LT

Mint

Marcy I’m so very sorry for your loss.

mrahope

So very sorry for your loss.  Hoping the support you are getting from loved ones will help.

Lorita

Marcy, please accept my sincere condolences on the loss of your husband.  As the others have said, please don't feel bad that you weren't with him at the end - you had been there with him the three days before .  But, I do know how you feel -- I wasn't with my mother when she passed away from Alz. and that has hurt me over the years but you never know the exact moment it will happen and you can't be there all the time.

 Please try to rest and take care of yourself.  Remember that now your husband is at peace, no longer in pain and  is well like he was before he got sick.  That's one thing that helped me get through losing my husband seven years ago. 

 This forum also helped me through my caregiving years - we also live in a rural area so the people on the forum answered my questions and let me know what was in the future.

 We all understand how you feel.

  

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toolbeltexpert

Marcy I am sorry for your loss, and words cannot fill that void. You cared for your husband like we all would want to care for our LO. Like you I have gotten lots of sound advice and it got me started doing the things I needed to do. Sending hugs and prayers.

Pam BH

Marcy, I'm sorry for the loss of your dear husband. I pray you will find peace in knowing he passed peacefully knowing you love him.

Joe C.

Marcy, My condolences on the loss of your husband, may you find some peace in the days ahead.

loveskitties

Marcy, so very sorry for your loss.  It is wonderful that you had 3 days with him to reaffirm your love.

May you find peace.

Jeff86

Marcy, thank you for sharing the last leg of your AD journey.  You wrote eloquently and your devotion to your DH shines through.  Heartfelt condolences. Wishing you peace and comfort in the days and weeks ahead.

Marie58

Marcy, I'm so sorry your DH passed, but am glad it was peaceful. May God grant you and your family peace, strength and comfort in this next phase of life. You were certainly a blessing to your DH and he knew you loved him.

Joydean

Marcy sending my condolences to you and your family. When you said you told your husband it was okay for him to go home, I couldn’t help remembering when my SIL told my BIL that same thing. Hospice was there telling us he might have a day or 2. She had leaned over and gave him a kiss and whisper to him “it’s okay if you are ready to go home. I will be okay.” We went in another room and tried to get her to rest for a while. Hospice nurse came in to say he was gone. I believe sometimes they just need to hear from that special love one that it is okay to let go. 

May God wrap His arms around you and protect you. Enjoy your family and rest when you can. God bless you and your family. 

CStrope

Marcy, please know that you were there when he needed you.  Not just the 3 days before his passing, but for the many years you cared for him.  Living in a rural area is wonderful, but it can come with some challenges.  The availability of resources is not like it is when you're closer to a larger city.  I'm so glad you were able to find a suitable place for him to be cared for, when you no longer could.  I live in rural SW Wisconsin, and I constantly wonder what will be available to help me through the tough times and tough decisions as my DH progresses.