My mother had Dementia for 6-7 years, suddenly things took a fast turn for the worse she was in a lot of pain and had extreme anxiety, so badly that she would try to get out of her own skin. That is when Hospice placement was recommended to stop her suffering, I agreed, she was so thin going into Hospice, but lasted 11 days. My mom,  passed about 5 minutes after me and my daughter got there, in the afternoon.  We still kept telling her how much we loved her, becuase they say the hearing is the last to go, but than I found myself in a frantic state of mind, I kept saying where is she, where did she go, I need her, she has been my strenght through my whole life.  Thank God my duaghter was there for me.

I thought I had been strong through this whole disease process, but when the end came, and you expect it, it is something that I cannot wrap my mind around.  I think a lot of it had to do with me feeling so horrible that she could not have food or water, and she looked so innocent, angelic, child-like.

I just want her back, I know it sounds crazy, but these are my feelings for the past 6 weeks, I dont know where she is, if she is anywhere, I am questioning my own faith.  I pray for a sign to let me know that she is happy and ok.  I guess I was really hiding the truth of what the end result would be from myself, I never let myself think about it, I would just say, we have today, that's all that counts.  How do you prepare yourself for the final journey in Hospice.  I am afraid these feelings will never go away.

Whymom, I agree with you 100%. It makes no sense to want them back to what they had to endure but want them back we do. Your Mom and mine could no longer deal with what was happening to their bodies. When my time comes I hope my children will deal better with my death than I am with my Mom's.

Having them in your life, is kind of like for better or worse. We enjoyed our LO's for the better and we got to take care of them and love them for the worse. I loved my Mom and it killed me to watch that beautiful, amazing, intelligent woman turn into someone who didn't know the day, year, month. Who was beginning to forget her grandchildrens names. ( I had labeled all pics in the house). All the things in life she loved to do were just forgotten memories; and yet I agree, I want her back. Selfish-yes but that's just how I feel right now. Just one more day (and then another).

I know how you feel.  I don't think anything can prepare us adequately for the loss of someone we hold so very dear.  Then when we are so wrapped up in their care, the loss just feels monumental!  I know that's how I felt for a good long time.

I just passed the 3-month marker yesterday.  Monday is Mom's birthday.  I know it's going to be a hard day for me.  These special days are awful.

Do I want her back?  I'm not sure I'd go that far.  I miss her more than anyone I've ever lost.  I thought losing my dad was hard but this is far, far worse.  I miss the sound of her voice, her sweet smile, her gentle kisses.  Those are the things I want  back but I wanted her suffering to be over.

Mom was only under hospice care for a week.  She had two life-threatening issues in that week.  I think she could have survived either one but coming back-to-back was more than she could stand in her weakened condition.  The treatment would have been agonizing for her, even just the testing that would have been required.  So I have no regrets about putting her on hospice.  I believe with all my heart it is what she would have wanted.

You say you are questioning your faith.  But then you thank God for your daughter being there.  You pray for signs.  Your faith may be under assault right now, but it is still there.  You said yourself your mother looked angelic.  To me that speaks volumes of the peace she attained.  I think that's your answer, at least part of it.

I believe that we can never be 100% sure of anything about the afterlife.  Otherwise, why would we need faith.  But faith is the assurance of things not seen.  May you find that assurance in your journey.

We are still new to this journey of grief.  May we help each other along the way.

   Thank you so much for your reply.  I never thought I would find myself on a message board, but we all have one thing in commmon, the loss of the person that gave us life.

  What hurts the most is being there with her when she passed, I dont know if she knew, it had only been 5 minutes after we walked in the room, they had just turned her to her right side.  She opened her eyes wide, took 3 breaths that seemned like at least a minute apart, than she was gone.  I think that if we were not there to see her leave this world, it might be just a tiny bit easier.  I keep reliving it in my mind, what was she feeling, did she know, did she know we were there, and when I saw her last breath, it killed me. My Daughter also keeps reliving it, its something that is so traumatic.  I have read a  lot of posts on here, but none of the ones that I have read, said that they were with their mom and held her hand as she left this world. Its so hard, I wanted to be there for her, but I didnt want to see what I saw, and we stayed to long after, not wanting to let go of her, it is the last vision of her that I am having so much difficulty with, and yes I miss her more than I could ever explain, I think Josh Groven says it the best.  I will never forget the song that was playing on her CD when she passed, it was a CD from Hopsice called Angels singing.

  Its just so hard to be strong

I read your post and cried again. My Mom wasn't on hospice care, she was recovering from hip surgery. I am so upset with myself that I wasn't there for her last breath and then I read your post. Now I'm not so sure. When they called me at 4:30 a.m. that she had passed in her sleep I was floored. Not expected at all. I ran to the nursing home to see her before they took her away. I cried because I wanted to be there for her. I thought I had failed as a daughter. I sat with her, talked with her and kissed her BUT I wasn't there for her when she passed. I think your Mom knew you were there and maybe was less frightened knowing she was surrounded by love on both sides; here in our temporary lives and there in our permanent home.

Don't dwell on the last vision of her on that day but dwell on old family photos and the memories associated with them.  Dwell on the fact that you were there to help your Mom transition from here to there. You loved her and were able to do that for her. That's the ultimate gift.

whymom,

First let me say, I am sorry for your loss. Losing your mother is absolutely devastating. I am approaching 5-months, on Thanksgiving day. It is so hard to watch the one who cared for you, who watched out for you become the one you care for, who you watch out for. But as I was showering Mom one day she told me "There's not many people in this world I would let do this for me." and I told her "There's not many people in this world I would do this for." And that's it in a nutshell - I would have done anything for her - and I still would.

I am one who wasn't there as Mom took her last breath. And that was so hard for me. The guilt was almost unbearable. I promised her I would be and then I wasn't. She had been on Hospice care for about 7 months. I got a call at work from my aunt on a Wednesday morning that the nursing home had found Mom unresponsive with her hands and feet turning blue. I left work immediately for the nursing home. The doctor was in and said that this was most likely the end of her journey. We could run IV's again but it would just prolong her suffering. So we chose to not run the IV's and allow God to take her home. I promised Mom I would stay there with her through the end. I sat in a chair next to her bed holding her hand, taking turns with my Dad, my brothers, nieces, nephews, and my aunts. On Thursday night in the wee hours of the morning (well actually Friday) she opened her eyes. She had them opened for about and hour and half. We all took turns talking to her. After everybody seemed to be done I laid on the bed with her and talked to her about everything I could think of. I knew these would most likely be my last moments with her and I wanted every second I could get. She didn't speak, but she blinked and fluttered her eyes so I know she was hearing and responding to me. I cherish that conversation. The next morning, Friday, my aunt told me and my brother that we had to go home and get some rest. We hadn't left her side and we looked exhausted. So we both left - for no more than 2 hours. Well, I finished my 1 1/2 hour nap and was in the shower when my aunt called. My daughter came and got me and said I needed to get back to the nursing home right away, Mom's breathing had changed and it would be soon. I rushed back but I walked in and they said she was gone. I was devastated. Not only because she was gone - but because I had broken my promise to her. I wasn't there. But then my aunt pointed out to me the moment she passed my Dad was with her but none of her children were in the room. My youngest brother had stepped out in the hall. She had chosen the first moment when none of her children were present. Mom always looked out for her children, first and foremost - and I guess she wanted to save us the pain of seeing her pass. So she left this world when all of her children were out of the room to save us that pain. I still felt guilty and I still do. Part of me always will. I promised her and I broke that promise. She never broke a promise to me. That's what makes it so hard.  

dj, wow! Once again your words are perfect. I wish I had the way with words that you do. I agree totally with what you said. I would give anything to have Mom back the way she was before she got sick - but I wouldn't want her to have to come back to the suffering she has had to endure these last several years. She's free of this disease and I know she's with me. I would give anything to have another day with her. I miss her terribly, but I wouldn't want her to come back to the state she was in. I wouldn't wish that on anyone.

sunnysideup,

I'm so sorry for your loss, too. How devastating to get news of a sudden loss like that. I am like you. I wasn't there at the end of Mom's journey. I felt so guilty. But I had been there for 2 1/2 days and the moment I left is when she passed. I guess that's why I felt so guilty. I promised her I'd be there and then I left. My aunt told me I looked exhausted so I left. I guess I shouldn't have listened to her and insisted on staying. But Mom would have told me the same thing - I KNOW that. I am beginning to come to terms with the guilt. I have talked to Mom about it at the cemetery. I think the thing that helped me the most was during the planning of the funeral. We had trouble finding somebody to do Mom's hair. We found somebody but they had never done a deceased person before. She asked if there would be somebody to go with her. So me, my 2 aunts, and my sister--in-law went with her. Me being able to be there and approve whether or not Mom's hair was right helped me alot. It was just something I could do for her. It was only a little thing - but it helped me SO much.

Oceanbum:

The "firsts" are always hard.  It's hard when the anniversary date of the death falls on a holiday.  I am dreading Thanksgiving.   I would prefer to skip it, but for certain complicated reasons, I'll still make dinner.  I'm not sure I will be able to hold it together during dinner, my father's absence will be loud, maybe only to me.

I'm going to the cemetery that morning, maybe that will help.  I don't know.

We share the 22nd as a day of loss, I'll be thinking of you and sending you a warm hug.  You have a wonderful big family, hopefully you will have comfort in that. 

My counselor asked how I can make that day a bit more less stressful for myself, I replied a glass of wine before everyone arrives  She was not amused, but I was serious.

Something I have to be thankful for is my daughter is cancer-free and that's what I'm going to try and concentrate on.

KML, I am positive your dad is whole again and at peace.  I truly believe that.

Well guys, here we go into the season of more "firsts".  It's terribly sad, I definitely feel a hole and have been kind of weepy over the past few days.  Last year on Thanksgiving I spent the day at the NH and fed her dinner.  I kind of felt like it was the last Thanksgiving for her, but of course we always hope not.

I'm sure although the boards may be slow over the next few days, one or more of us will check in here.  Even if I don't happen to be on at the same time, know I'm with you in your grief and hopefully we can all get through this holiday, even if we cry through part of it.

dayn2nite:

I am with you and all of you during the most difficult set of holidays.  It's hard not to think about everything that has happened.  My dad looked forward so much to having his family around him.  It was about the only time some of his family visited. 

Each holiday for several years, I would wonder will this be the last.  I had a tradition of buying Christmas cards for my dad to send out.  I did this at the after Christmas sales.  Couple of weeks before Christmas, he and I had a tradition of signing the cards, me putting the address labels on and him putting on the stamps.  He would always ask me to sign his name, but I would say no, Dad, it'll mean more to everyone to see your signature.  He would always say he had terrible handwriting, I would say, you do just fine, Dad.  Then he would say how sorry he was he couldn't go to high school, his dad made him quit school after junior high to help support the family.  I would remind him how smart I thought he was, he held a good job for many, many years, his co-workers and bosses loved him and respected him, he bought a house, he raised a family, he fought in a war, he did good.  You did good, Dad, you did excellent.

We'd have hot chocolate while filling out the cards.  I would decorate his house and then the last two years of his life, his room at the care facility.  I am going to miss all of that and there is a hole in my heart that has not mended.

I have the cards I bought for him last year for this year's Christmas.  I was hoping for one more Christmas with dad here. 

Oh my!! I forgot all about the christmas cards that I had bought for her last year to sens this year. We always made it a fun time writing out the cards. She, too, wanted me sign them but I felt that this was her thing to do and made it more personal for both her and the reciipient. We had out tea and cookies while listening to holiday music. I thought we could do the same this year even tho' she was in rehab.  Unfortunately, life intervened and that is not to be.

The holidays will not be the same for me as it won't for others. My sibs have their families and are going to get thru the holidays just fine. My children are scattered and I am not going to see either of them this year.Thanksgiving is a turkey microwave dinner and Christmas is too far away to even think about. I was supposed to be having dinner at the home with Mom on Thurs. but this year it's just me, a bottle of wine and the microwave. Pity party for one..

Sunnysideup:

If we lived close to each other, I'd invite you over for dinner.  Sometimes we want to be alone and that's fine, but other times, having the distraction of others around is a good thing.

Maybe there's a friend who would love to share that day with you.  Holidays can be lonely for a lot of people and gathering together can be nice and lift the spirits a bit.

You take care of yourself and do something special for yourself. 

Oh, sunny -- I would love to have you to my house too!  We could have some laughs, a few tears and lots of wine.  I'll be thinking of you on Thanksgiving.  Sending some hugs out to all my friends on this board.  

Sunny, does your community have a Thanksgiving dinner for those who don't have anyone to spend it with?  Maybe the Senior center, the Masons or a church?  If you're up to it, would you volunteer to serve dinner to others on that day?  

This Thanksgiving will be bittersweet.  I know that my parents are spending it together even though I miss them with all my heart.

sunnysideup

Thank you for responding, you are absolutley correct, you should not feel quilty about not being there when your mom passed.  Many of us dont get that chance to know when it is going to happen, we dont live in a perfect world, where we get the chance to say everything we want at the end, not even knowing if they can her or understand.   Death can occur at anytime, even when least expected, we can't be with the ones we love that are very ill, evey minute of every day.

I wasnt sure if that was what I wanted for me and my daughter, I kept going back and forth on it, we could have slept over-night with her the entire 11 days, but I choose not to, it would have been too much for the both of us.  I decided to leave it up to mom and faith, if we were not there, than that is the way she wanted it, if we were there, than that is the way it was going to be, and we no sooner got their, she had just been turned, when it began lasted 5 minutes, the most difficult thing I have ever been through, but she wanted us there, if it is true that they get to choose.

It was very traumatic, letting someone you loved so much your entire life go, but I knew in my heart, she could not go on.  She stopped eating, would not take her medication, and the last 2 weeks suffered in pain and extreme agitation.

I feel like her death was not a corse of nature, becuase it was in Hospice, but sometimes nature is too difficult for people to bear the pain of.

It is difficult around the holidays, her birthday is 12/30  I hope and pray that we can all stay strong and support each other the best that we can.  My daughter and I are seeking counceling for what we experienced at the end and what we are feeling now, 7 weeks later a very heavy loss.

whymom, I found my mom's birthday (occurred about 3 months after she past) worse than Thanksgiving was.  I guess birth made me think of death and the full circle she made.

I had an appointment with my psychiatrist yesterday for my usual depression.  Mom used to be his patient too.  I have professional verification I'm doing okay, lol and unless something changes I don't have to go back for 6 months.  Yay me.

He did ask how the 1st Thanksgiving was and I teared up a little, but otherwise I was able to talk without crying, which was not like the last time I was there, so I guess that's progress.

Decorating for Christmas has been decided for me.  A month ago during a storm, the neighbor's giant tree fell on my car and totaled it, but along with that it damaged the garage and I of course don't have money to fix it.  Anyway, the door no longer opens and all the decorations are in the garage.  Dilemma solved.  I am not re-buying decorations, that's for sure!

I think I know what I'll do! Baking her pie is a wonderful idea! I think I'll do that. But the other thing I think I'll do is her calendar. Every year I would buy her a calendar for her birthday and fill in all the important dates. I did that since I was a teenager. She counted on me buying that calendar for her. So I think tomorrow will be the day I fill in the calendar with all the special dates, bake an apple pie and drink a cup of coffee!! We used to sit at her dining room table, have a cup of coffe and just talk. I think that's the perfect day to honor her memory!! I'll still try to get my village up - but only after I get my other things done first.

Thanks guys for the help!! I can always count on you!!

I was with my father for a few hours the day he died, then I left to take a break, and when I returned I found out that I had just missed his death by minutes. I felt guilty for a while, but two things helped:

1) remembering that I was there for him on a daily basis for 8 years of ALZ, which he very much appreciated and thanked me for a million times. Surely all of that matters more than the final day.

2) When I took my break, I was making phone calls to insist that he receive more morphine. So I was "there for him" in the way he needed - medication - which was more important to him right then than my physical presence (he was unresponsive).

So, in those ways, I have mostly made peace with that. 

Peace be with all of you. If you weren't loving people, you wouldn't be here.

Oceanbum

It really seems as through your mom had a lot of last decisions to make, in her hours of peace, she was once again able to make those decisions for herself, I truely believe that a part of their thought process returns to a normal stage for a short time, while they are on hospice.

It was more than obvious that your mom did not want her children to bear the pain that was ahead, but that she wanted your dad with her.  I was told in hospice that one lady lasted 42 days without food or water, I said well that is medically impossible, but nothing is impossible, she was waiting for her husband to give her permission and tell her it was ok to leave and to go to a better place, where he would oneday re-unite with her.

I think that my mom had been going through the dying stage, that Sunday morning, but held on until me and my daugher got there, so that we could say goodbye to her and hand her over to God, and so that she could say goodbye to us, we heard it in her last breath, her voice was clear.  It was just the 3 of us for 26 years, and she would not have left us without saying goodbye, it happened within 4 minutes after we entered the room.  They do have the control, how it works no-one can explain.

I am happy to hear that you were able to keep your mom on an IV, the Hospice that my mother was in, would not do that, they said that it could cause her more distress and I wanted it more than anything, to give some hydration and fluids to her, I guess a lot has to do with their organs, if they are beginning to shut down prior to them arriving at hospice, it is painful and they would not want to prolong that pain, I know that it was obvios in the bloodwork that was done at the nursing facility where she had been.

Dont feel guilty, she knows you promised, but this was her decision to make

Hugs and kisses

I ag