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Just lost my Dad.....
Posted: Thursday, February 16, 2017 1:56 AM
Joined: 2/16/2017
Posts: 1

I just lost my father on Saturday (2/11/17).  I'm so confused and overwhelmed with guilt.  I live in CA and he lived in AZ.   He was in what I believe was a nice nursing home, and I called him every day to check in with him.

Around mid January I realized when I would call and talk to him he seemed very distant.  He couldn't really answer questions and there was so much silence on the calls.  Ignorantly, I just thought his meds were being adjusted (he had sundowners with some aggression, so they were trying to adjust his meds).  I was only 2 weeks ago that I realized it wasn't the meds.  One day the caregiver told me "he's forgotten how to chew".  I simply thought, ok you guys are going to help's all good.  Then I realized the severity....if he'd forgotten how to chew he was probably losing his ability to speak as well.  I continued to call him never got better.  He would sometime answer yes or no questions....but absolutely no sentences or asking me how I was doing - he literally had those conversations with me just 4 weeks prior.

I was on the phone with him 10 days ago...I had sent him some videos, photos and a letter so the caregivers could share it with him.  When I called him to ask if he'd received everything he couldn't really heart was breaking...I just kept telling him I loved him...and then, he uttered "I miss my daughter".  I immediately started crying.  I had to wrap up some items at work but stayed close with his caregiver for updates.   Then 7 days before he passed the caregivers literally told me "we are starting hospice next week...not to worry, he's not ready to give up yet, we just need hospice to come in twice a week to help with bathing etc".  Ok, that was scary, but if they were just coming in "2 days a week" certainly he's not going to pass anytime soon...right?   I drove all day this past Friday to AZ excited and scared to see my father on Saturday.  The caregiver told me not to be shocked by his appearance...that he looked very frail since the last time I'd seen him.  I went to the nursing home at 11am....the site of my father was absolutely appalling.  I peaked into the room he was in and saw a man who weighted only 150 pounds (he's 6'3) laying in a bed sleeping.....I stepped back from the room and asked the nurse if that was my father (I didn't recognize this person)....she said yes. Tears started streaming down my face as I braced myself to sit by his side.  So here's where my world changed and have so many questions....

My father was laying in bed staring at the ceiling going in and out of sleeping.  I sat by his side for 5 hours and he never turned to look at me or connect.  I started stroking his arms with one hand and holding his hands with the other hand.  His hands tightly held onto mine for 5 hours...he never let go.  However he never looked at me.  I would put pictures in front of his face and he didn't really track.  If i stood up and over him with a photo he would look at the photo for a moment then he'd stare at the ceiling again.  He was bed ridden!  Couldn't move...there was no way he could hold a phone if I called him when I returned to CA...and he wouldn't be able to even talk to me on the phone if he could hold a phone.  How on earth was this they guy that I was on the phone with 2 weeks ago????  How is he in this state and they think it's fine for hospice to only "show up 2 times a week"....this guy looked like he needed full time hospice care!  He had completely stopped eating...they had to puree food and force feed him - they did this once while I was there and they asked me to leave the room while they fed him - I peeked in and it broke my heart...he couldn't move his arms or head.  They put food down his throat and he choked it up and they basted his lips with water.   They allowed me to come back in and I sat with him again.   Holding his hands and talking to way of course.  There was no life in his eyes, but he held onto my hands so tight I know he felt me.  Then I stood up, hugged him tight and kissed his forehead.  As I sat back at his side, a tear ran down his face.....God I hope that means he knew his daughter was finally there.  I remember looking him over...his hands, arms and skin on his face looked pink, heathy and moisturized.  

I left that night to go to my hotel, with plans to return the next day.   I was preparing how I would tell his caregivers and hospice that I wanted round the clock care....I realized without a voice, without the ability to on earth was he going to cry out to someone if he was in distress!!!  While I was there he was chocking on saliva and I had to lift him up to pat his back.  His breathing was labored on earth would they hear him if he was chocking.  I felt horrible leaving him there that night....but had a plan for my conversation the next day.

As I was scoring the internet in my hotel about the signs I'd seen that day with him, I got a call from Dad had passed!!!  Wait, the man who they told me "wasn't ready to go"...the man who didn't require full hospice yet...the man whose skin looked so healthy had passed?  I was heartbroken!!!!   So now I'm consumed with guilt!  Did I leave him in the care of careless caregivers??  Hospice was out and did an assessment 5 days prior and agreed he just needed help with showers.

They claimed he "passed in his sleep".  I've been reading when someone passes in their sleep its normally from cardiac arrest/heart attack.  Well, just 5 years ago my dad had quadruple how could it have been cardiac arrest!  I also read that when someone is at the point of passing their skin is grey and very thin.  I can vividly still see how normal his skin looked....I had stared at his skin and rubbed his arms and  hands for 5 hours after all.

Did he pass in his sleep???  Or did he choke and no one heard him???  Did he aspirate and struggle to breath and no one heard him!   I'm consumed with these thoughts and I'm numb!
Sorry for rambling on.....I miss him so much....I had no idea he could be up and about with a walker and eating just 4 weeks ago and then lose his ability to chew, talk and walk...then pass so quickly.
I keep reading in forums and sites where  their loved ones don't remember them.  He never forgot me, my mother or my brothers.  I'm so that normal that someone can have dementia and still remember their closest family member until the end?
If anyone else has had a similar story or can provide some insight it would be greatly appreciated.   Thank you in advance.   Kristin Ross

Posted: Thursday, February 16, 2017 7:07 AM
Joined: 5/21/2016
Posts: 2007

Hi, Kristin Ross, Your dad remembered you. He asked for you. You had a wonderful communion with him and he grasped you by the hand with all his love. You can be sure he was waiting for you in order to fully be able to let go. The way you were describing your dad it brings back to me my dad at the end of his life with that strong grip. My dad chose to leave fully while my mom was in the room sleeping next to him, not while I was there. He was very peaceful. I offer my sympathy and condolences. I know it is not an easy time. We will help you get through it. Nadine aka MPSunshine
Veterans kid
Posted: Thursday, February 16, 2017 5:11 PM
Joined: 10/17/2014
Posts: 1239


I'm so sorry for the loss of your dad.  Please accept my condolences.

My heart just breaks for you, I lost my dad almost a year ago.  Still trying to find my way.

This can be a very surreal time, there's a lot to do, then all of a sudden...everyone else seems to go back to their lives, and often we are left to move on alone.

Your dad loved you!  I'm sure he was very happy to see you .  His daughter he loves so much!

I know it doesn't seem possible,  but at some point in the future, the time that you spent with him will be comforting to you. 

 I'm glad you joined here, although I'm sorry for the reason that you did. There are so many good people here on all the different boards. It can really help to know that you're not alone, that there are people  Who do get it and can understand your feelings and what you're going through. 

I'm sending you and endless virtual hugs,  and pop tarts ( those and Twinkies were my dads fsvorites)  

 Please take care of yourself, and know that we are here. Update us when you can,

Julie  aka veterans kid 


Posted: Thursday, February 16, 2017 8:21 PM
Joined: 12/4/2011
Posts: 19632

Kristin....your father absolutely knew you...he very well may have waited for you and he very well may not have wanted you there when he died. 

I wish I could do. say something that would stop you from going over and over what happened but you are going to do just that. 

This may help. At 2pm the hospice nurse told me my husbands lungs had cleared. At 5:30 they were called back because his skin was mottling. He died 10 hours later. I was either in the room or in the next room the whole time. He simply faded. There was no choking or coughing, nothing. He had recently had his pacemaker battery replaced. He just quietly stopped.

Death comes with a surreal numbness. It comes with a shock to us no matter how prepared we might think we are. It brings raw emotions of every kind. We here know...we understand and we are holding you close.

Posted: Thursday, February 16, 2017 11:41 PM
Joined: 5/2/2014
Posts: 761


I am so sorry for the loss of your dad, my heart just breaks for you. I am sure your dad knew you were there and who you were. My mother knew who I was and my son up until her passing, I felt very fortunate for this. My mother's passing was very quick, she went from stage 6 to stage 7 in 48 hours. She went from walking to not being able to stand up that quick. She had started turning way food and liquid and passed 7 days after hospice came in. This being after 2 months prior she was not accepted into hospice. This disease is horrible and we just never know how fast the downturn can come on or how quickly they can leave us. Please don't beat yourself up over second guessing. Just try to find comfort in the fact that you got there in time and that you were able to see your dad one last time. In time, you will be comforted by the fact you got that last visit. Like others said, I think your dad most likely waited for you to arrive and he waited to pass until after you left. This is not uncommon. My mom did this with me, I stepped out of the living room for a couple minutes and she was gone. It was just the opposite with my dad. He was in a hospice facility and I got a call from my brother telling me to catch a flight out ASAP (I already had a flight scheduled for the next day) as hospice felt my dad would not make it thru the night. This really shocked me as he had only been at hospice for 1 day and he was alert & talking that morning. I got there at 6pm, I did the same as you, held his hands, talked to him, rubbed his arms. He just stared straight ahead but I knew he knew I was there, I could feel it. The hospice nurse took me aside and told me he was holding on for me as my brother told him I was on my way. She told me I needed to tell him it was ok for him to go. Of course I didn't want to but I knew I had to, once I told my dad it was ok, he passed within a few minutes surrounded by his family. I am so grateful that I got those last 2 hours with him.

Cherish your memories. I pray that you can find some peace during this difficult time. Sending soft hugs.
George K
Posted: Friday, February 17, 2017 6:13 AM
Joined: 12/16/2011
Posts: 2818

Kristin, I can only affirm what everyone else has expressed:  this damned disease does accelerate very quickly after being dormant for long spells.  No one understands this damned disease and how it progresses.  Your dad did feel your loving presence.  I think he wanted to spare you the grief of his departure to a new life.  My wife went very suddenly after six years of apparent stability.  It seems to me you're being really hard on yourself by using today's knowledge on yesterday's circumstances.  That's what's known as a 'no win' situation.  I know all of us here think loving thoughts of you and what you did.  It might be a good idea if you do, too.  I'm sending you a gigantic cyber bear-hug as I urge you to be kind to yourself.


Mimi S.
Posted: Friday, February 17, 2017 3:44 PM
Joined: 11/29/2011
Posts: 7028


I am so sorry for your loss. I'm so glad you found us, but wish it would have sooner.


It is so hard not being physically present at the end.    But you weren't and you did the best you could from a distance.  I wonder if there is such a thing as a Patient Advocate that might have been in the picture.
Be realistic: flying across the country a few times a month would not have been feasible.  How could you have gotten more realistic reports from Hospice and staff?  Had you been told he was being force fed?  Most folks on these sites would not have agreed.
And as you are recovering, think about writing on the regular caregiver's section some thoughts about advocating for someone in final stages from a distance.  Most don't read this site until they fit the category.
Kristen, I am so sorry for your loss. May peace be with you.


Posted: Sunday, February 19, 2017 11:57 AM
Joined: 5/31/2014
Posts: 124

Hello Kristin, I am very sorry for your loss.  My mum passed away 10 months ago.  I had her at home until the last month when I just could no longer vouch for her safety and she needed professional 24 hour care due to her agitation.  She was in full decline her last months but I really didn't think she would pass when she did. The last night I stayed with her all night, holding her hand, never letting it go.  At 7:30 am, the aides came in and brought me breakfast.  I went to bathroom, came back, was up stirring the coffee and suddenly realized her breathing had changed.  I took a look and rushed over and she took her last breath.  Did she wait until I stopped holding her hand?  until I went out of the room for 4 minutes??  Your dear father knew you were there at the end, do not beat yourself up about it.   This disease takes many twists and turns.  Please know that we are here for you and we have all gone through the ups and downs and guilt trips.


Posted: Monday, February 27, 2017 4:37 PM
Joined: 4/1/2016
Posts: 66

Dear Kristin,

My heart is breaking for you.  I can only echo what the others have said.  My dad also passed quickly and shockingly. This disease is so unpredictable.  We can all tell you not to go over it in your head over and over, to not second guess your decisions, etc., but we all know you will because that's what we do when someone we love so much dies.

I too believe that your dad knew that you were there; that he waited for you; that he loved you very much and didn't want you to be there at the end.  There are so many stories of people that leave the room for a couple minutes and their loved one passes.

I believe he finally has all his memories back and knows how much you love him.

It will take time to heal and there will be ups and downs.  Please be patient and gentle with yourself and come back here whenever you need some support.