What I Wish Someone Had Told Me About Dying. Part 5

Part 4

One of the hardest parts of my Dads dying days was the pain. Even with all the medication he hurt a lot. We would help him move and have to turn him and he would say ow ow ow. It was the only thing he could really say the last few days. It was heart breaking. Having to help him move and having him say ow while you do it…. it was traumatizing. I told my husband that if I even need hospice to put me in a hospital, let strangers me the ones to move me and make me say ow. I am glad my Dad got to die at home like he wanted but it was the hardest thing I have ever experienced. I am now very scared of other loved ones dying. I wasn’t as strong as I wish I had been. I couldn’t stand seeing him in pain. He would cry and I would take the soonest chance I could to run upstairs and ball my eyes out because at no point did my Dad accept he was dying. I tried so hard not to tell him….

That last morning I got up a bit later than normal, but I was ok. I thought it would be another day of sitting with my Dad and having loved ones visit. I took some time alone to tell him good morning, to say I was sorry for sleeping in because goodness knows he knows I love sleeping in and he has always been an early bird and never understood that about me. I hugged and kissed him and told him finally the thing everyone kept telling me to say. Without thinking to deeply the words just came out of me…. that we would all be ok and that he could go to where ever he needed to be that we would take care of Mom and not to worry about my brother that everything would be ok. I went about the rest of the late morning with all the kids, my 5 kids and my surrogate family came to visit and my Dads friend was there and this part is were things are a bit of a blur….

At some point the kids wanted to go for a long walk to a store, so all of them went but my oldest surrogate daughter. But then her and her Dad went for a walk. One of my sisters was on her way over. There was food I think, it was medication time for my Dad. Every 2 hours I think it was then, a mix of pain medications as he just hurt so so much and all he would say was owe. I told Mom it was medication time, and her and I and my dads dear friend mike all went to give it to him. The hospice bed he was in was in the living room. I sat in the rocking chair as Mom gave him the medications. She was done giving him his meds, his head turned, and she took a breath…. suddenly I was very aware of the moment. My eyes on his chest. He stopped breathing. I stood up in disbelief and then he took a breath and I relaxed and breathed too letting the fear go. But then he didn’t take another breath…  quiet words started to escape me, I moved to the other side of his bed giving Mom room. She went from so strong to crying, screaming, sounds I never heard and never wish to again. I kept touching Dad, forcing myself to not do CPR. It was so hard to not do it…. I had to back away, and then I had to be sick. I ran for a bathroom and made it, but then needed to be away…. I managed to get upstairs and to that bathroom…. more sick…. My sweet surro baby made it to me, hugged me, she lost one of her Dads to this same cancer just a bit ago so this was very hard and raw for her and her sister and their Daddy.

It was so odd my Dad was in that room, in that bed, and yet gone. I sat in the chair by him. As if I was still sitting there ready to help him or keep him from falling. He didn’t need me anymore and it made me cry to realize it. I still needed him. And then things just got more weird in the way that life goes on around you like it has to, like normal, and yet nothing is ok and nothing is normal anymore. Robin helped to distract the kids, it was so very helpful. My sister took me out to get food for people, and we felt lucky to miss the funeral company that came and took my Dads body from the house, it had been a few hours. I didn’t want to see them take him away….  I feel badly I couldn’t be there for my Mom then but I needed my sanity and thankfully those with more level emotions were there for her. She is so lucky to have some great friends.

Everyone has to die, not everyone gets a chance to say a long goodbye. My dad never did accept he was dying. He promised me he would fight and he did till his very last breath. It is some how beautifully tragic. He died with loved ones right there with him in his own home on one of the first warm days after a very long winter.

Life kept spinning that evening and the next day. The bed dad died in was still in the living room…. the equipment company wasn’t coming till the next afternoon. I can’t tell you how badly I wanted that thing gone. No one tells you how displaced emotions can get. I was angry at the bed because I know my Dad hated what he knew it meant. His own mother had been in a bed like that, in that very living room, and she had hated it too. I hated that bed. Anger is a very real emotion after a death, even a rather peaceful one like my Dad had, with loved ones around.

I wonder now if he waited till all the kids were out of the house to die. Some people told me it might happen that way, that if I left he might die right after. It happens that way I guess, they feel alone and like they can go. Maybe a suddenly quiet house let him feel like he could go. I know he knew Mom was right there. I wonder if me telling him just hours before that she would be ok, that we would be ok was what he needed to hear to end the suffering. It is horrible to suffer that way. I wish it on no one.

I wish I could tell you that there is peace and healing that comes after being there when a loved one dies. It has been 2 months and I am still rather a mess over it all. I can tell you though that the greatest gift was those who showed up. I felt so loved and I have to think my Dad did too. I hope he did. He was very loved. Show up! Tell others to show up! When people offer to help, say YES. You might want to hide away with your sorrow but truly, it is those connections that will keep you going and later show you what really matters.

 Research what active dying looks like!

Don’t wait till the last minute like I did. It makes it worse.

   Say yes to love and help!

Thank you Mom for being the love of Dads life and doing all the things he wanted at the end. Thank you to my husband for everything, truly, I would have lost my mind without you. Forever and Always. My Dad thought of you as a son, and you where the one there for him in the end. You made him proud. Thank you to Joc for all the visits and food and trips and distractions and for the wine and giggles when I badly needed the distraction! Thank you to Robin and Emma and Gracie for coming so far, knowing it would be heart breaking and full of memories. You saved us. Thank you Evans Mom for all she did and all the advice and care and hard work and love. Thank you Evan and Sadie and Ethen for the visits and help and smile, oh how Rory loved you guys! Thank you to Gerard and Lori for coming and helping and being there when we needed! Thank you to Mom, and Ash, and Mani for coming and trying to make it all hurt less and for stopping to get a few more moment together when the world felt so wrong. Thank you Susan for the meals and support and love for Mom. Thank your Diane for being there every step of the way with my parents and being there still when Mom needs strength. Thank you to Dad co-workers who showed up and did so much to make this less hard. Thank you to his gun club for being there for him and for the years of fun you all had together and those still helping Mom deal with Dads guy “stuff”. Kelli, Lori, Sabrina, love you ladies! I know I am forgetting people and I am sorry if your name isn’t here. Writing this through tears and my head is again foggy.

There is no time line for grief, don’t expect there to be. It comes in waves. Sometimes out of the blue. I have to believe what I told my Dad though, that we will be ok. We have to be. Somehow.

 

 I love you Dad. I miss you.

 

One of Dads dear friends put this hat in my Dads coffin and he gave two matching ones to me and my Mom. This is how I like to think of him now… that he just went fishing. It makes me smile and cry at the same time.

Gone-fishing-dad

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What I Wish Someone Had Told Me About Dying. Part 4

Part 3

When we got to my parents house I found my Dad worried. He hugged me and told me over and over he wasn’t dying. He didn’t understand why we came up to visit him a month early. I told him I was worried and I did something I rarely do…. I lied, a bit. I told him my house needed repairs (true) and that I didn’t want to be here when they were being done (also true). Alas, the landlord took two more months to even start those repairs when I had hoped he would get them done while we were gone. Still, I told my Dad I didn’t want to be home, and that was true. I didn’t tell my Dad that everyone was worried he was dying because he was so adamant that he wasn’t. He was upset that hospice was there so much and he was certain one of them was trying to kill him.

We managed to get him to drink a bit and even got him to eat some birthday cake for one of our daughters. He kept walking around the house and wanting to move! I thought him eating and drinking and moving was a great thing! I was so excited, he might be ok.

 Sometimes the dying get restless and move, a lot.

I didn’t know this, and no one wanted to tell me. I was all excited and loved one who knew better didn’t want to take my hope away. He was walking and sitting on the porch and drinking and talking. I thought everything was going to be ok. It took a nurse telling me that my Dads activity wasn’t him getting better, it was terminal agitation. He was actively dying. When I read about it, when I finally sat down to read about dying I was shocked and quickly a mess. All hope was gone. What was worse was that Dad didn’t know it.

It was as if he knew he had some place to go but not sure how to get there. He couldn’t sit still. At all times someone had to be with him as he would get up and fall down. He liked to lean forward in his reclining chair and would now lean too far and fall. I can’t count the hours spent sitting in front of him. My husband and my Mom and I took turns. Uncle came and took turns too, as did other friends and family. Home hospice care really requires at least 2 people at all times. I hadn’t known that. I thought nurses would be there more. I can’t imagine if we hadn’t been able to go up and help my Mom. Helping someone live while they are dying is so active…. it is so much work. It is heart breaking. I didn’t know. So many things I didn’t know.

 

My Dad loved my Mom so so much. Two peas in a pod they were. When Mom spent a month with us to help with the new baby, before we knew about the cancer, Dad would talk to her many times a day. He missed her so much. She missed him too!

Mom and Dad Kissing 2015

I was so glad we could be there for her during such a hard time. My mind wasn’t all there though and sometimes it was all I could do to take care of myself and not break down in front of everyone. My husband did more than I did for my Dad in his dying days. He spent nights up with him, changed dads diapers, and was a strong support to my Mom too. He handled more than I could. Mostly I sat with Dad, begged him to drink, and talked with him. Dad would get upset when ever Mom was out of his site. I remember my Mom was out of the house and Dad wanted to be up, so I helped him walk to the kitchen and then he stopped and hugged me for what felt like a very long time and he told me he loved me and told me he wasn’t dying and I just held him and cried and he cried. Just us alone crying. How could my big strong father now so weak be dying… neither of us could accept it.

   Tell them it is ok to die.

Many people told me that it was important to tell him that it was ok for him to die. I couldn’t do it. I just couldn’t. Days went by and Dad wasn’t eating or drinking and he couldn’t hold a conversation anymore. The last real thing he had to eat was that birthday cake. The last time I “knew” he was there was when he held me and told me he loved me and that he wasn’t dying. It struck me there would be no more conversations with him and suddenly I had all these questions for him. Every single day I have new questions for him….

    Even though the dying stop eating and drinking, they might not stop peeing!

My Dad who had until those last few days managed the bathroom things himself needed diapers in the end. It was horrible for him. I couldn’t do it…. Mom and Husband did. A dear family member who works with the elderly helped so much. She was there for Mom and Dad and I can’t thank her enough. She had told us we would need diapers but in the blur of everything none of us thought to get any as Dad hadn’t needed them. But then he did…. my sweet niece raced right out to the store and got them for him.

Accept the help that shows up! 

There are too many people to list that shows up and helped make things a little less terrible. I will never stop being thankful for them all. I am not sure they understand how much they meant to us all.

   SHOW UP!

I can’t say this enough. Be there as often as you can. You don’t want regrets.

Know though that showing up can be…. traumatic.

 

Part 5 – The End.

 

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What I Wish Someone Had Told Me About Dying. Part 3

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