in the active dying stage

EJ97

I keep telling myself Mom had a good long life. She turned 92 yesterday - the day she started the active dying stage. I have grieved for the last 6 or so years and of course knew this day would come, but my emotions are all over the place. I feel ok and then intense grief knowing I will never be able to hold her hand again or tell her I love her or see her smile. This is so hard! I don't think you can ever prepare yourself for this stage. She saw my dad, the man she was married to for 50 years, the other day and he has been gone for 20 years.  I have heard this is common and it gives me some comfort knowing he is there and she will join him.  I miss her so much and I am so glad that I was able to help her all these years. I don't know what my life will be now and that scares me, but I know she would want me to be happy.

SusanB-dil

Hi EJ97 - ((hugs))   yes, it is hard.

May flowers

EJ97, my thoughts and prayers are with you during this difficult part of the journey. (((Hugs)))

mommyandme (m&m)

I’m so sorry for your pain.  I have chills all over.  You shared your feelings so clearly and I have felt the same way when I thought my mother might be heading to her transition.  My mom is still with me but I guess I’m just trying to say I empathize deeply and feel you. This is all so difficult.  Please know you’re in our thoughts, wishing you and yours peace and comfort.

abc123

Dear EJ, I’m so sorry for your pain. This is hard. My mom is not far behind your mom. This is emotionally painful. Sending you peace.

dayn2nite2

It's so awesome she saw your dad already.  He'll be there when it's her time, so don't worry about her.

For you, it'll be very odd, there will be lots of thoughts of "mom needs XXX" and then you realize mom doesn't need anything.  The first year was hardest for me.  It's been 10 years and I still cry on holidays and birthdays because I miss her.  But it gets bearable.

Even if she isn't conscious, she can still hear you - I spent the last 3 days reminiscing about good times and telling her thank you for letting me take care of her.

God bless you.

KawKaw

I grieve with you.

Knowing an emotional blow is coming did not make my grief any less when my mother with dementia passed.

There are no "shoulds" in grieving.  It flows in different rhythms over time.

People here are with you as you continue on this path toward her transition.

My heart is with you.

​fesk

EJ97, I am sorry - this is so difficult. You and your mom are in my thoughts and prayers.

ButterflyWings

EJ97 - we are thinking about you and your DM. Bless you for providing her with such loving care on this long journey, and safe passage at this difficult time.

JudyMorrowMaloney

I can imagine what you are going through.  It has been 7.5 years since my DH started with symptoms of  Frontotemporal Dementia.  The average life expectancy of someone with this disease is 8 years.  He continues to deteriorate and feels weak all the time.  It makes me think about how I am going to feel when he starts the active dying phase.  I'm not sure what the active dying phase will look like for my DH since he has a different type of dementia.  Has anyone had any experience caring for someone in the active dying phase of Frontotemporal dementia?

live in daughter

Hi EJ97, when our Mom was in her last days my sisters and I who cared for 24/7 for 5  years had many emotions as you express. We watched for years dementia slowly take our Mom from us. There would be times ( thou be them short) that our "old" Mom would surface. We learned to appreciate those times.

We were relieved when the end came but at the same time profoundly sad that we could never take care of her as we had for 5 years. During those 5 years our Mom was our top priority and with her death we no longer had our top priority. 

We needed to learn new ways. Those new ways are different for everyone. We volunteer, connect with friends, travel but our time with our Mom really has shaped what we value and how we look at life. We still miss our Mom and keep her memory alive by sharing stories and her famous sayings.

We had kept a diary for all the years we cared for her and created a book about the 5 years my Mom, my sisters, and I shared. For us this is a great tribute to our Mom and how she still continues to share and shape our lives.

I will keep your Mom and you in my prayers as you continue your journey.

EJ97

Thank you everyone for your support. It means a lot to me. Mom passed this morning. It feels like a strange dream. The grief is overwhelming. I know this whole experience has changed me and I'm not sure what my life will be like from here on. I will find my footing eventually and I know mom would want me to go on, to be happy

abc123

Dear EJ, I am terribly sorry to hear of your Mom’s death. Give yourself time to grieve and mourn her loss. We are all different and we can heal in our own way. There are no set guidelines. Sending you peace and prayers.

Mint

Yes EJ your mom would want you to be happy.  This is the same thought I have had when someone I love dies.

Take care