Category Archives: documenting life

Interview with Casey: Guilt, Grief and Caregiving of an Independent Dying Parent

This guide is not just about my journey.  I want to share other peoples stories.  It is remarkable how many commonalities there are in our experiences.  However,  each person has a different perspective and something they can teach the rest of us.  This story is from an interview I did with Casey (I have changed all names for interviews mainly to protect anyone that were involved in their story).

Do you have any tips for working with medical staff?

I found that if you act intelligent you get better care.   What I mean is that if you show them that you have good records and understand their lingo then they treat you differently and you get more direct answers.   I felt better and more prepared too when I had good records with me.    I’d also recommend that you work with the nurses rather than the doctor when you can.    Oh, and don’t be afraid to get a second opinion and go to the best doctor you can.

How about your family? 

I was the rock for my mother but my brother was the rock for me.   Every time I asked for help he stepped up.  We had a constant communication line and talked everyday to compare notes and what needed to be done.

What about your immediate family?

I think I had unreasonable expectations for them.   I got irritated with them at times because the house wasn’t clean or the laundry wasn’t done to my expectations.   But their expectations were different – they didn’t care that the house wasn’t immaculate.  They didn’t expect me to clean it but I felt guilty that it wasn’t done and snapped at them about it.  I appreciate though that they never resented the time I spent with Mom even though it took time away from them.

How did you deal with talking to your Mom about her funeral and plans for burial?

I didn’t really.   I knew it had to be done but my Mom is not a touchy feely kind of person.  But I knew what she would want so I wrote up the will and came to her and told her that I had written it up and that we needed to go have it notarized.   She just said “ok” and we went.

Eventually I asked her about how she wanted to be buried.  I told her, “Mom, you need to tell me what you want done.  I would like to be cremated.  Would you want that?”   In her typical ‘don’t bother me with the details’ fashion, she said just replied, “Whatever you want is fine.”

A couple of days later though she came to me and said, “that seems kind of rough to me… what if I am not totally dead.”  So I knew she had been thinking of our conversation.  We didn’t talk much more about it then but after a few more days she told me that if she was cremated she would want her ashes spread in the river.   So I wasn’t really sure what she wanted when she actually died.  That made it tough.

I remember sitting around with my siblings, husband and kids the day after she died and they were all looking to me to make a decision on how she should be buried.  I wanted to do what SHE wanted but I just wasn’t sure what that was.    Finally I settled on the cremation.   It was what I would want and it was the least expensive option.   But I still wasn’t sure so I said out loud, “Mom, give me a sign that you want the cremation.”  Just then something fell loudly in the kitchen.  I took it as a sign that I had made the right decision.

What triggered the tears after her death?

I was numb for the first three months.  I think I was afraid of feeling the pain and for so long I had been the rock.. not allowing feelings to enter … I had to be strong for my mother.  At the time of her death I didn’t feel as sad as I thought I would because I was happy for her that she was no longer in pain.   It took about three months to believe it was real and then it really hurt.  By then it was too late.  Friends thought I should have been over it by now but I was just starting to really feel the pain.

It started with a phone call.  My cell phone rang one day and I looked down to see my Mom’s face and number on the screen.  Shocked, I didn’t know what to think.  I turns out my brother, who had loaned the phone to my Mom, hadn’t changed the contact numbers after her death.  But that started the tears.

Other things were triggers too.  Buying flowers in the spring was tough.  It was something we had always done together and I wasn’t sure how to do it without her.  I bought all the flowers she would have liked and planted them the way that she wanted.  I’m not sure if that was a tribute to her or just because I could hear her in my head telling me what to do.  Shopping is the same way.  My mother and I always shopped together.  Its been over seven months and I haven’t been shopping for clothes since she died.  I’m saving a lot of money!

If you could go back and change anything about the time when you were caring for her what it would be?

Not much.   I guess the one thing would be to spend more time sitting and talking with my Mom.   Instead of talking to her I spent time cleaning her house and taking care of things.   Part of it was I was afraid of talking about the hard things but also I felt like I was accomplishing something.   If I could give anyone going through this some advice it would be to be tender and caring and loving because you can’t get those moments back.  And forgiving because they can be difficult at the end.

Another would be to “Listen and listen well.”   Listen to the things they really care about and then do them even if it is against what you would want.  When it became difficult for Mom to care for herself, I asked her to come live with me.  She refused and it hurt my feelings.  Why wouldn’t she want to come live with my family?  The people who really cared about her?

Eventually, she wasn’t able to be alone and her neighbor and good friend was coming to check in on her.  Hospice was involved at that point and I called Hospice and told them I was coming to get her.  I was putting my foot down and she was coming to live with me.   I arrived at her house to get her and started to gather the things that she would need.  After a bit, her friend asked to speak to me outside.

I know it was difficult for her but I appreciate what she reminded me of that day.   “Casey, this is not about you.   I know you want her with you but she wants this control and independence.  She wants to be able to change the thermostat to what she wants, walk at night without bothering you, eat what she wants and when she wants.   She loves you dearly and appreciates what you do but she needs this independence.   When she told Hospice that you were coming to get her to take her to your house, she cried.”

It hurt me to do it, but I left her at home that day.  It wasn’t about me.  My Mom may have been ill, but her mind was not and she needed this last bit of control over her life.

I also wish I had asked Mom about her past, her childhood and things I didn’t know.  I assumed I would be able to ask her brother after her death and avoid asking her about her past as she was dying but turns out her brother doesn’t remember.   Now it’s lost heritage that I can’t get back.

Things to Do With Your Parent Before They Die

As it became more clear that my Mom was going to indeed die, I reached out to my sister-in-law who had lost her mom several years before. I asked her if there was anything that she would have done differently in that last year. Things she wishes she could go back in time and change.

After we broke down in tears she gave me some items. It seemed each time we discussed my mom it brought up all the feelings of anguish she experienced when she lost her mom and we both ended up crying. Now that I am on the other side of the death mark, I think it was because she knew what I was about to experience and knew it was not going to be good. I think about it now like when I watch a first time pregnant woman. You wish you tell them about those first few months of motherhood – that its terrible and wonderful all in one. That they are going to wish some days they could go back in time to before children and that they would feel guilty about it. But to hold on…. it does get better and that deep fatigue fog does lift eventually. There is no way to warn a first time pregnant woman. They are blissfully unaware and wouldn’t believe you anyway.

So in the midst of tears she gave me her advice.

First, she wishes she had taken more pictures and video in the last year. She didn’t because she knew her mom didn’t look her best and wanted to respect her but in retrospect she wanted more pictures of her mom. That last year had a lot of memories and good times with their family. A video of her Mom would have been especially nice as she would have been able to hear her Mom’s voice again. We take lots of video of babies and children but adults don’t like video of themselves.

Second, she wished she had talked to her mom more directly about what she wanted them to remember about her and stories about their family’s history. It was hard to bring up the subject though because it was admitting that death was coming.

Lastly, she wishes they had taken a vacation as an extended family — her Dad, Mom, her family and her brother’s family. After her Mom died, they went on vacation with the extended family and her Dad’s new girlfriend and they had a great time and their family was closer than it had been in a long time. She wishes they had that great memory like that to go into the homestretch with her mom.

I took her advice to heart and did all three. I made sure to take pictures of my mom and her grandkids. It was more difficult to get a picture of my mom and I and honestly I am not sure I ever did accomplish that goal.

I also asked her very directly what she wanted to pass along to her grandchildren. What did she want them to know about her and lessons she wanted to pass along. It was difficult to bring up the subject because while we didn’t say it, it was obvious I was asking her because we knew she would not be around to tell them herself.

This is what she told me:

  • Choose your battles wisely
  • Don’t assume that that something can be used the most obvious way
  • Don’t make your house so comfortable that your kids won’t leave
  • When you raise your kids put them in a garden that is so large that they can’t see the walls.  She explained further that they should feel a sense of freedom but there are walls to protect them.
  • Know where you come from – church, family and heritage : this helps you understand yourself as you grow and change. Why am I reacting this way or think this way? Its okay to change but its good to understand where you came from.
  • Walk in another’s shoes. Experience how other people live. Don’t just have dinner in their house but immerse yourself to find out what makes their family and community tick.
  • Act honorably: the world will be a better place for it. You can set a tone for your community so be an example.
  • “Never be afraid to do small things with great love” (Mother Teresa quote).   You are god’s present to the world and his messenger.  When you do things without any thought of reciprocation, you don’t know the result or how it will affect someone.
  • She wished for them a life full of positive joy that they can pass along to others.

Lastly we went on a vacation with my extended family.  I can’t take credit for planning the vacation.  I really don’t remember who came up with the idea but I do know that we all enjoyed the trip and I love having the memories.  While we were there I also snuck in a video of my mom enjoying some wine.   Six months after she died I put it on YouTube and her brothers and sisters and my siblings were all glad to hear her voice again.

Your list may be different but this may get you started and help open the conversation with your parent.