My journey with this horrible disease started in March of 2005. Dad had been having memory problems and his company doctor finally layed him off work. That was one of those horrible days that I would love to forget. That day was the day that I became the parent and he became the child. My mom was his main caregiver but I live just across the pasture from them and was there most every day. I did all the decisions and financial stuff. I have an older brother and sister but they weren't around much. Daddy went down pretty fast and forgot who I was pretty quick. We went through all the stages. The sadness, the rages, the trying to run away cause he didn't know who we were, the begging to go home.... On July 3rd of this year he just couldn't get out of the bed. He wound up in the floor while trying to get up. Then on August 14th he started having seizures. That was another day I would love to foget. We stayed up there alot those last 13 days. And for some reason my sister decided to become involved when she decided he was dying. We sat on a death watch for 13 days. He stopped eating and drinking...and the sound of him struggling to breathe will haunt me forever. He passed away early on Thursday August 27th. I couldn't stay for the last few breaths. It was killing me. My mom and my brother and sister were in the room with him. I feel such a horrible guilt that I couldn't bear to be there the last few minutes. I had been there the whole 4 1/2 years and buckled when mom really needed me. I had felt burdened down during his sickness. Like I was having to push aside my husband and children to help care for dad, but now that he's gone I can't stop the ache that he is actually gone. After the funeral we went back to the cemetary to look at the grave and I had an overwhelming urge to dig him up. Just to get him back. I never thought it would be this hard....

Christy96
I am so very, very sorry for all you have been through.. You did an excellent job in caring for your Dad. Four and a half years ..Whew…Those last few minutes? Let’s just say we are all human and all reach a point where we can take no more. It’s Okay. But, maybe there was more. …When we lost Mom in May of this year I had our chaplain come in for last prayers etc and I asked him How important is it that we are with her when she passes? He could see we were exhausted, we hadn’t slept in over 30 hours and when we had it was for only a few hours… and we’re not young chickens anymore. And he said interestingly enough that in the end she would choose. Then he told me a story about how he and his 6 siblings who had all sat with his Mom for three days. They decided to all go and get a cup of coffee at the hospital cafeteria, the only time they had all left her in weeks. She passed alone, while they were having coffee.. they all preferred to think maybe it was to hard for her to leave while they were all there… Maybe it was the same with your Dad.. Maybe he loved you that much…
As to wanting to dig him up, when I was young and first began having experience with death and dying I lost my stepfather, who I cared for greatly. I wanted so badly to dig him up, it was as though I had x-ray vision and could see him lying there beneath the ground. It took months for me to stop thinking of him as being there in the grave and start realizing he was simply gone .. Gone to a better place… I began to think of him as young again and happy.. I pray you find peace and happiness, I’m sure that is what your father would want.. Take care
SJ

This is still so fresh to you, I would give yourself time. I truly loved what SJ said, though, that maybe you leaving the room actually in some way gave him the ability to move on. Possibly he was still hanging on to be with you, too. 13 days is a long death watch. Ours lasted 3 - and my dad died when we had all left for the night. The hospice center told us he was not close to dying and they would call. But even they didn't know - he was there one minute and gone the next with none of the breathing changes.

Please take good care of yourself these next few weeks as you adjust to the new life. It will take a while to get used to him not being there. HOpefully you will soon be able to talk about him with a smile and not tears every time - that took me a while but I am finally there (most days :. My dad died in April.

Christy, I'm so sorry you're going through this. All of us in this forum have gone through it and we all know how hard it is. My mom died 4 months ago, and I am still haunted by the images of what she went through those last two days. I understand why you left the room and I'm sure your dad does too. The important thing is that you were there for over four years. Wow. What a wonderful daughter.

None of our words will touch the pain you're feeling right now. Only time will diminish it. And there will be days when you think maybe you're going to be okay after all, and the tears come flooding out of nowhere.

You and your family are in my prayers. Please keep posting here. It does help.

Sorry Christie about yer dad.

Lost mine in January -iknow after taking care of him for the last 2 yrs and sitting next to him at home when he took his last puff that he MUST be in a better place.
There CANNOT be someplace worse than where he was and what he went through. That in itself made me understand so much-brought me closer to dad than I ever was and now all I think of is the wacky stuff he did while going through AD.
There was nothing we could do but make his life with AD as good as wepossibly could and I know we did at least that --Chris

Thanks to all of you for replying to this. I finally slept good last night and got up to sunshine! It has been so dreary and rainy here ever since he passed thursday. The sunshine helps me to think that maybe I will be able to go on. Everyone of you have helped me. Thanks from the bottom of my heart. I will continue to read and post!

So sorry Christy for all you are going through. I went through the same thing . My mom was put in hospice on February 26 and passed March 8th of this year. I had to watch her go through the same thing & I also cared for her. She lived in my home for almost 12 years. I didnt want to leave her bedside & yet I couldnt take watching her like that. I said my goodbye & hoped she knew. It was horrible, I tell myself she is at peace now. You did all you could & it was the best . Take care of yourself now and God Bless you!!

Oh, Christy, my heart aches for you. In the big picture, your 4 1/2 years of loving care and I should repeat LOVING (the unconditional kind that walks through all the storms and lightning bolts of AD with a loved one) will bear stronger light than the minutes you took to catch a breath. I would hold on to the thought that he didn't want to put you through any more - your part of the journey had held him strong when he needed it. He knew. Feel the sunshine - it may be extra warm from his love!!! (I just lost my mom 2 weeks ago, advanced AD and spinal cancer. I choose to accept the blazing August sun as the extra light up there!!) Deb

I, too, decided I'd had enough of watching my dad die. On Saturday, I went to see him. I did not sit by his side hour by hour as I had with mom to the final moments. I learned from her death that it's okay to say goodbye while they are alive. Her death was horrific and I knew that I had to be okay with saying goodbye to dad a bit sooner than actual death. When I said goodbye, he was still able to open his eyes, with difficulty, knew who I was...but his body was shutting down. I will spare descriptions. We said a few Psalms to him. I kissed him. I asked if was tired, and he said yes, and he passed away on Monday morning at 6:30 AM.

That Sunday I struggled with going back over, but with family support, we stayed together and prayed that he go home to the Lord. After 2 years, I had done all I could do and I had so much more to do afterwards.

What I struggled with is this: We decided not to embalm him, as he had "gone through enough." And bury him and have the memorial service two days later. Because I could not "see him" I worried endlessly that he was not dressed right, or his hair wasn't fixed. He was a 1950's version of the Metro Man. Very clean, and cared about how he presented himself. I laid awake many nights worried about his body, which I now realize was silly. He is fine. He is with Mom. He is with our Lord and he's happy now. He died Sept 14. It is still raw. I was alone in all of this as my sibs did not come to see him at all, even though they were local. They did not have any strength to see him dying. Ultimately, it is a private issue, and after all we've done, we have to forgive ourselves if we don't live up to some imagined expectations. Watching dad die was a repeat of mom, and in the end that could only be described as one of the most horrific experiences of my life, I knew that I did not want to repeat that experience as it was too late to help him, now. I had done all I could when it mattered. And, so did you.

So sorry for you loss.My prayers are with you.My Mom passed away Sept. 27with this terrible disease.She passed here at home. The house is so empty,hopeful it will get easier. Think of the good times and the love you had for your Dad.

Christy96
So sorry for your loss. I'm just reading through some of the posts tonight and trying to reach out for others as my journey recently absorbed me. Just read your note and feel so bad it was a month and a half ago your lost your dad.

I think your dad went with your out of the room as he wanted to be with you... realize that he became free to see you in another room... I bet he gave you a great big hug and kiss, thanking you for your attentions and caring heart.

Also realize that you did nothing wrong walking out of the room. You did not know he would pass in those moments. My sister passed with me 10 feet away in the next room. I was supposed to turn her, but was tired and put the turning off about 1/2 hr. That day we were turning her every hour as her skin was breaking down. I wanted so bad to be with her at the moment of her death, and when we found her white and beginning to feel cold in her limbs, I yelled and "demanded" her to come back to me so I could be with her. I wanted a redo... do you believe it? I thought that as I broke to pieces next to her. I have not thought of this for some time now, so it makes me sad as I remember it. But your description reminded me of that night and how close I was, yet so far. Her oxygen machine was loud so I did not hear her breathing issue. The day before there had been a few moments when I thought she was passing as her breathing was different, so I imagine that probably happened while I sat in the next room, in view of Patty's bed, and did not realize her moment was then.

That night as I tried to sleep after difficulty I snoozed and woke to look at the clock and saw again the 3:33 I had been seeing on and off for a while. I laughed that night out loud at the site of it. I realized Patty was there, my mom was there, and my dad was there. Now I knew the 333 sitings I had been having were completed and understood. I used to call my parents and Patty the Three Muskateers! I still continue to see the 333 and 33 often, especially in moments of stress; so I know they are trying to either calm me or reassure me when I need it. So you see your dad probably was following you out of his room to be with you as you were his caregiver!

Christy - My mom died August 8th and I also could not be in the room with her when she took her last breath. It was only my mom and I and the nurse, but I did not want that to be my last memory. I left and she died and I knew that I could not handle seeing her take her last breath. Please be easier on yourself.

The ache in wanting them back is so deep. It's not possible to feel anything but this horrible pain because they were a major part of our lives for so long.

This is the place to come because we all are going through it and can find comfort and understanding here.

I just came in the door and had a sudden rush of grief come on me. I couldn't wait to get inside the house and this is where I came because I knew I'd find the comfort that I needed.

So sorry for your loss.
I have just started following this thread after becoming a peer volunteer.
Know that you have much grief.
May God give you peace with memories to carry on with.
Sheryl