My dad is gone...

Karsten, I’m sorry for your loss.

Karsten; I don't see you as having a pity party; I see you, as you say, as someone who had a very important purpose/job, and now that element of your life is gone.

And your dad, who you loved dearly is gone, as well.

It's a compounded loss, complicated by the fact that your mother is most likely acting in untoward ways.

I also have no doubt that there's some family member or friend whose told you that you're grieving too much, too litlle, or in the wrong way (there is ALWAYS someone ready to step in to do THAT!)

The most egregious example of that I've seen, several years ago a friend lost her 40 year old daughter to breast cancer, leaving a husband and two preteen kids. Someone was overheard saying, re the 10 year old daughter "well, SHE's certainly in 7th heaven, getting all the attention, isn't she?"....There is a special place in Hell for folks like that, I think.

We grieve in our own way; you come here and rant and rail and moan just as much as you like! We're Team Karsten!

Kirsten, I haven't interpreted your concerns and self recrimination as self-pity. You're not feeling sorry for yourself; it's more as if you're criticizing and berating yourself.

If you were engaging in self pity, you'd be referring to how your life has changed, you can't do various things you wanted to, etc., b/c of your father's death. I haven't seen any of that.

I see some legitimate concern about your mother's behaviors, and a lot of anxiety about whether you did the best you could under the circumstances.

Chin up, now! And go outside if you can and enjoy the spring weather. Here in lower Michigan it's a lovely day, powder blue skies dotted with small, fluffy clouds meandering across the sky, trees bursting from bud into leaf, birds chirping and probably trying to find a mate, and nuts like me obsessing about how to get thousands of square feet of garden plowed or tilled and planted by Memorial Day.

So, tell us what you're going to do to treat yourself today, to relax and to feel better about yourself??

Thanks GA. Once again very helpful words. Not only in the "advice" but one thing I think I need to be doing is quit having this self pity party. I guess its one thing to grieve, but everyone goes through this. I know your loss was very recent. I am not the only one here. I think you talking about your experiences reminds me I am not the only one who has dealt with loss . Sort of an obvious concept I know, but in the middle of self pity I don't recognize that as I should.

Karsten, my father was close to 100; he was strong, always bounced back after severe medical episodes. I fully expected he would live several months longer to reach his goal of 100.

Then, things changed. Rapidly. I was taken aback as there were so many things I wanted and needed to do and thought there were still several months left. I still feel regret for not "seizing the moment." I know I'll feel that regret for some time, so I have really focus on what I could do.

And the important things are what we did, not those fun trips we planned to do, or other things that weren't first priority issues. In the dying stage, there's no way we can do all we thought was necessary, so we triage our feelings and focus on what can and absolutely need to be done.

When I've written on other posts about decision making and moving forward, I've tried to take emotion out of the picture and treat this as a life's learning experience.

There's no way we can redo what happened or didn't happen. We can only learn from it and move forward. If I remain stuck in reliving what wasn't done, I'm only harming myself. Remember that when you begin questioning yourself again.

That's what I'm trying to do instead of beat myself up mentally because I didn't do something that might have been good, but wasn't absolutely necessary. And the necessary aspects are what are important in the long run.

I don't know what to tell you about dealing with your mother; from what you write, she'll be stressed as well, and that will compound your grieving. This could be a time to renew your parental relationship, and I'm hopeful that the two of you will be able to come together to grieve, then move on, with her being much more contemplative. But she might become more upset. We never really know.

But remember that you're both grieving, and don't deny your own grief in favor of comforting someone else.

No need for anyone to respond. People have been so helpful here. I just find it therapeutic to type this out on this forum. My dad was diagnosed at 91 with ALZ and I know at that age your expected life is not as good as if you were diagnosed younger. But he was very fortunate he was not one of those. Heck, even if you don't have ALZ, at age 91 you don't have a lot of life left. And after the pneumonia episodes of the last couple of months, we knew his time was limited. Yet when it did happen, it has just bowled me over like a ton of bricks, as if he died suddenly and unexpectedly at age 60. I guess one is never ready for it. My cousins lost their 97 yo parents in the same year two years ago, and they said it doesn't matter, you are never ready. As readers know I have beat myself up for decisions I made, but even if they were not the best decisions, it would not have changed the time of his passing by more than a few days, weeks at most. And it would be just as hard then, and as Barb pointed out ,I would then find something else to feel guilty about. I guess I am going through what many on here have already going through, and what others will be going through. Pretty much everyone goes through the loss of parents at some point, and if not, its because you went first which is more tragic. I have a good friend who has a 30 yo son who was DX with Stage IV colon cancer, very rare. Those are the real tragedies. Who am I to complain? I guess like everyone we just hope there was no suffering or disappointment by our LO that we were not there at the end. And regardless of the way one believes, he is better off now than while suffering the last stages of this wretched disease, though I guess there are no good diseases. I had a girlfriend a few years back whos mom died at age 64 of cancer, her had died three months later of cancer at age 69, bad enough as is. My dad lived a full generation longer and Kara would have loved to think her parents lived into their nineties. While we are no longer together, I still feel so bad for her. Then to make matters worse, her brother, then sister, died of cancer, a couple of years later, both in their forties. Anyway I am of course rambling, and don't expect nor probably even want anyone to have wasted their time when everyone has been so helpful already. I guess I am just writing this as I would in a journal. For some reason, I am taking this much harder it seems than anyone else in my family. Maybe because I was the primary caregiver, not in the sense of taking care of him in his home, but for the last three months I have been driving everyday, picking up my mom going to facilities, advocating for my dad, researching better options, spending time with my dad. It has been like a full time plus job which it seems I have now been laid off from and have no purpose. That sounds selfish now. Would I have wanted him to live longer in this wretched state so I could have a purpose? I have to remind myself every second that despite what decisions I made, his days were numbered. No one can beat ALZ.

Kirsten and GA, thanks so much for the compliment!

Please stick around, K. Were really good with neurotic moms here.!

Thanks Garden. When you say it that way I am not sure that I would have wanted to be there or not. I think we can all agree what we would have wanted would have been what provided the most comfort to our parent so I hope my absence didnt make things worse.  I so wish I would have been there holding his hand, yet the images you describe may have haunted me.  Yes, Barbs email was tremendous. I printed it out and posted it on my fridge so I can always look at it.  I was so touched that she remembered all the details and also so healed by what she wrote. You, Barb, Rocket, Rosses. FreqFlyer and countless others have been so helpful here. You think you will have a break now?  :)  Before long I will let loose on my neurotic mom, which ironically is what brought me to this site to begin with. My dad has been a labor of love, and so easy to deal with. The health care workers always remarked how easy he is as they are used to having dementia patients be ornery and difficult. I suppose part of what bugs me is that while my dad was dying my mom was the one draining my emotional energy through her  neurotic nature . I first came to this site as my mom is so difficult. But I will try to give yall a break. :)  No, I am not from the south.   One of my brothers said that my dad did not have ALZ, his system was just fried from putting up with our mom for over sixty years.  I kind of chuckled.  He said no, he is not joking.   Nobody could put up with that for a length of time without going nuts.  My moms own MD told me she is with my mom for ten minutes in an examination room and is worn out after ten minutes.  

Barb, your post is elegant and eloquent, poignant, insightful, compassionate, and beautifully written.

Karsten, there are physical signs of accelerating decline, agitation, vacant stares, immobility, not eating or drinking. They're hard to watch; I did b/c I wanted to be near when my father passed, so he could know that he wasn't alone.

I still remember that vacant stare, and won't forget it for some time.

Often it's better that we don't see those last moments and don't remember them.

THanks so much Rosses and Barb. Barb I am so touched that you remembered every step along the way for me and that is how it really happened. That means so much to hear it written out reminding me. I keep telling myself also the swallowing was the issue. Perhaps certain decisions may have made a few days difference here or there, but he was not living in any event. I do hope having him fed the last day didn't cause him pain. While the duty nurse said he went downhill the last three hours, I guess I never did find out what or how she meant that. I am thinking of asking but not sure I want to know.  Also, when the nurse told me he had been going downhill faster for three hours I asked her later why she didn't call me, she said she didn't think it was that immiment, its her fault.  I said no, not your fault, but in retrospect a little bugged by that.   It was not her fault my dad died, but if they knew he was going downhill, a call would have been nice,  OR, on the other hand, it save me a lot of bad memories by perhaps not seeing him die.  I had always hoped or thought an ALZ patient is so out of it that one of the silver linings is they are not awaree.

Karsten, dear one (((((hugs)))))).

There are a lot of posters who show up here, post a scenario and we tell them what they should be doing. And they argue, no no, that's not what I WANT to do, etc. etc.

THOSE folks can feel all the guilt they like after things go badly. They haven't listened to the very experienced "hive mind" that shows up here each day to answer questions.

YOUR dad had repeated bouts of aspiration pneumonia which was a result of his dementia, I believe. I think we told you to look into hospice (or his docs did) and you DID. You accepted the fact that your dad was in the last stages of a life limiting illness and that aspiration was likely to kill him, I seem to recall.

You moved him from the NH because he didn't appear to require THAT level of medical care. No one here jumped up and down and said "NO DON'T DO THAT", did we? Moving him to MC seemed to be a good move, and a better one that your initial thought of moving him home (which would have driven your mom over the edge, and taken dad with her).

MC turned out to be a terrible place, which you had no way of knowing. It HAD been a good place and was recommended to you. There are always bumps along the way when moving a patient in, and your family had more than its share.

When you discovered that there was a spot in a good VA contracted NH, and that it would be free (because you are also responsible for trying to hang on to money for your mother's care in her old age--and frankly, it's QUITE clear that your mother needs to be in a facility, it looked like the right thing to do.

Again, NO ONE HERE said "no don't do that, Karsten, it's a terrible idea".

It was a good idea.

Your dad was in a nursing home. He was sleeping a great deal and the Hospice Nurse told you that waking dad for meals was the best thing to do. You got and took professional advice.

So you had dad wakened for meals. You had the staff feed him. Did the DON come running down the hallway saying "DON'T FEED HIM, his body is shutting down, he won't assimilate food".? Because if the staff thought that your dad was actively dying, then THAT'S what THEY would have done.

Withholding food from a dementia patient is a very serious thing and facilities are loathe to do it because it seems like they are starving the patient. If your dad was accepting of food, then he WANTED to be fed.

His underlying problem was aspiration. Early on, you told us that. And that the doctors told you that it was the dangerous thing about dad's condition. So he had thickened liquids and pureed foods. That's the best that can be done, aside from a feeding tube. And NO ONE thinks that a feeding tube is a good thing in a situation like your dad's.

Your dad was dying. He died. You were with him along the journey and managed what was able to be managed. You got and took all the advice you could.

Please try to be at peace in the coming days. Guilt is for the folks who did something wrong, with intent and malice, or by neglect.

Karsten,

I understand why you feel how you feel and know that really nothing anyone says will instantly take away your guilt.

However, aside from TIME, which cannot be rushed, I think there is something that might help you:

Ask yourself how would your dad feel about you living with the heavy weight of guilt in your heart about his passing.

Karsten, you cannot change what happened or how it happened BUT you can most definitely change what is happening and how this will affect your life going forward.

And don’t even do it for you, DO IT FOR YOUR DAD! 
This, you can still do for him.

Give him the best gift possible: Peace in your heart!

Many hugs going your way!

Hugs to you -- wish I could say/do more. I get it, the overwhelming guilt. It's been 4 months now since I lost Dad. And the truth is, if I could do it all over again, I would probably make different mistakes -- or in my mind, bad decisions. But my personal beliefs tell me that Dad's time was appointed before he was born, and that my love for him covers all of those mistakes/decisions. Please go easy on yourself --grieving is a long road.

Karsten, I am so sorry for your loss. I missed my dad's passing. The nurse called me to say they had started oxygen. I asked if I should come (I live about 10 minutes away from where he was) and she said no, that he was OK. They called me an hour later to tell me to come and when I got there he was gone. I'm sure he was already gone when they called me. I felt guilty for quite a while. But I had no way of knowing he was going to pass.

With my mom, the hospice nurse had told me she thought mom would pass that day. I sat with her for over 12 hours. I sang to her, talked to her, sat with her, told her she could go, it was OK...I finally went out and took a brief break on the loveseat in the next room. I woke up 30 minutes later to hear...nothing. No labored breathing. I went in and she was gone. So despite my best efforts, I missed her passing too. Even if we're there, our loved one passes on by themselves.

We all do the best we can. That moment of passing isn't nearly as important as the hours, days, and weeks of loving care that precede it. You were there when it counted. You loved your dad and provided the very best care you knew how. Over time, you will come to accept that. In the meantime, just be kind to yourself. {{{Hugs}}}

I know everyone is telling me I should not feel guilty and logically that is right. But just overwhelmed with guilt. I think had I made better decisions about care facilities I would not have had to traumatize my dad with all the relocations, and the dumb memory care that didn't give him water for a day shortened both the length and quality of his life. I fear making the staff at the NH feed him Monday where he then threw up send him into breathing problems which killed him . I try to placate myself by telling myself dying early may have been a blessing for him. Then I feel guilty I was not there when he died when it was clear earlier in the day he was not doing well . What was I thinking? Why would I leave? Poor guy had to die alone in a strange place. I know people say some people choose to die when they are alone. I just cant buy that my dad would have had that much cognizance to do that. Of course if that is the case, maybe he was not aware enough to know he was alone. I just feel he deserved so much better.

Shane, thanks for your story. I will admit this idea of a patient, especially an alzheimers patient having enough cognizance to know when to die based on presence of people there is hard for me to accept, but I have read so much about it there must be some truth to it. At the same time I am thinking because of a lack of cognizance on my dads part, maybe he probably didn't realize if I was there or not. And I have since thought, would I really have wanted to see the last breath. Thanks for sharing your experience. It is helpful to me.

Karsten,
I am so sorry for your loss. Sending you love, grace and peace my friend.

Dear Karsten. I'm so sorry for your loss. Please try to be kind to yourself - these early days of shock, grief and loss are hard enough to get through without constant self accusations. Wishing you and your family comfort.

Karsten, just more ((((((hugs))))))))).

Karsten I know how you feel. I will share my story.

The hospice nurse told me my mother was dying. I drove from MD to NJ as soon as she called me. I got there at 3pm and sat there with her. She had no roommate and the nurses let me stay with her.

Her breathing was labored & I could hear her. I fell asleep next to her on the empty bed.
I woke up startled as I didn’t hear her anymore. My brain must have been in tune to her breathing.

I went to her but she was gone. It must have just happened as I woke up. It was 3am.
I spent some time with her alone, then summoned the staff.
I beat myself up literally for years for not being awake and with her as she took her last breath.

On finding this site, I read so many accounts of loved ones passing right after the family left.
This was super comforting to me. You don’t know how much better I felt. Now I truly do think my mother did not want me to have the memory of witnessing her last breath on this earth. I am sort of thankful for that now as I don’t want that memory.
I feel that this may be the last wish my mom had for me. My mother was private & didn’t want people to see her suffering.

I have made peace with this. You leave yourself so vulnerable when you care about someone so much, it’s easy to feel that you didn’t do enough, when in fact you did. And I mean you Karsten. Your dad knew that you loved and cared for him. He knows. 

All this will become more clear and I hope you will find peace. It may take months or even years (as it did for me). But I am ok with events as they happened. 

Celebrate his life now & try not to second guess yourself. The next few days will be super emotional. Get some rest when you can. My mom passed at 89, your dad was 93. I think they are all up there somewhere doing the jitterbug with their sisters, brothers, mom & dads. 

I'm so sorry -- Please know that your emotions will run all over the place for awhile yet. And the guilt? Well, I know I made mistakes and some bad decisions, but I loved my dad deeply, as you loved yours, and I believe that that very deep love covers our imperfections.

Karsten, his eyes were on The Lord! and I do believe that our loved ones do sometimes wait until we are not present, to save us the memory and pain, to pass over.

You did nothing to hasten his passing, it was his time.

May God hold you close as you go through this difficult journey.

Karsten, we'll never really know if our parents pass while we're there, and know the comfort of having us there, or if they are able to leave when we're not so that we are spared the trauma of being there at the specific time they die.

My father and I stayed with my sister, each holding one of her hands, while we slept sitting upright. Suddenly I awoke, with no specific prompting or reason. I just felt something would happen. She passed 45 minutes later.

My father passed 50 minutes after I left the SNF. I had been with him for hours earlier; a few times his heavy breathing slowed down, and I thought he was more calm. Now I wonder if he was trying to leave, but didn't want to do so while I was there.

I will never know, but I remind myself I was there when he needed comfort, and that's probably the best I could do.

You will find yourself alternating between the emotions you describe, of feeling relief that the suffering is over, but also feeling guilt that you didn't "do more", even if you couldn't possibly do anything else.

I think this is a part of being human, of loving someone, yet trying to come to terms with their deaths.

There's no way we can ever know what our loved ones were thinking; perhaps we don't need to know. Perhaps we should believe what makes us feel the most comfortable, as we need to continue on until our own time comes. And we need to balance the conflicting feelings we feel.

Think more about what you did for him, about the relationship you had, and just let yourself "be you" as you move forward.

Thanks again all. I am going through what I assume is the normal range of emotions from thinking it was just his time and its a blessing for him, and I feel sort of matter of fact about it, to on the other extreme, just breaking down. What has been bothering me lately is I was not there at his bedside when he died. He died at ten thirty and the nurse called me to tell me and said he had started going downhill at seven. When I got there, I asked the nurse why they didn't call me when he started going downhill. She said he was getting worse, but she had not thought death was immiment. She said it was her fault. I reassured her it was not her fault. But I do wish she would have called. I don't know maybe it would have been torture sititng there and watching him breathe his last. Some say people sometimes wait to be alone to die, though I don't know if I buy into that. But at any rate, my latest guilt trip is not being there when he exited this world. I wonder if he was aware we were not there, and if that caused him sadness. More likely, he wasn't aware of what was happening, but I don't know.

Karsten I am so sorry,, you did a great job,, and your family knows that. Wishing you peace.

Kar, just so you undestand how this all work; 8 months after my mom's totally expectable death, I'm stiill second guessing myself over having insisted that we call in hospice ( she had fallen, was in pain, was refusing to get out of bed).

I think this is part of the over responsible child thing. Please try to get past the idea that you could have done something different......

I'm so sorry for your loss Karsten

Karsten, early in the day that my mom passed, the Hospice aide tried to feed my mom some soup. She got a whole lot in ( mom hadn't eaten anything but some Italian ices in days) and we were so heartened that perhaps she was turning a good corner. And then it all came out, or up, not sure which. Sweetie, stop blaming yourself. It was dad's time. We love you. ((((Hugs)))))

Dear Karsten,

My deepest sympathies and condolences. I'm so sorry to hear about your beloved dad. Thinking of your during this sad time. Sending you hugs.

Everything you write reminds me so much of my own journey. I know its hard. Please know we are with you.

Thanks again to everyone. Your comments both bring me to tears and comfort me. I will admit I am still haunted that had we not forced the nurse to fee him for lunch causing a vomiting reaction, he would still be here. But as others here have said, and the hospice nurse said, he reacted this way to food as his body was shutting down. But I am sure many of you know how guilt can get in the way. And also he would not have lasted much longer anyway from this wretched disease. And maybe that's good.

My brother from North Carolina called to remind me that I had been the main guy helping my dad for ten weeks now and was a hero of sorts. And that is good to hear. But in my glass half empty way of thinking about things, I feel I am hurting the worst now as the person I spent the bulk of my days watching over and caring over his gone, and now my life is empty. My dad had been my purpose for a few months now.