Grieving her while she's still here

definitelytara · July 4

My mother's dementia journey has been a gradual but steady decline for the past six years, but in the past month she had a marked decline that took me by surprise. I had her treated for UTI but it seems that the cognitive loss is unrelated. She still knows who is who and can dress herself and make some decisions but is really otherwise like a 5 year old.
Since this marked change, I've been unable to spend any time with her without crying. I don't want her to see this so I stay away, but I really would like to be able to spend time with her while some part of her is still around.
Any advice would be very helpful. Thank you.

20ktkat26 · July 4

I am brand new to this site and your post was spot on. My mother's Alzheimer's journey is in the middle-stages with a significant decline that has started last October with a UTI that ended with 5 days in the hospital. UTI's are no joke. They do strange things to elderly people that do not seem like it is relatable to a UTI.
Anyway, the last several months I have been going through the process you described in your post. I finally came to the conclusion that I was grieving the loss of the mother that I knew and loved my whole life. At the same time, welcoming the new version of her. She is different and I love her too. It really is a process. But in the last month or so, I am able to spend time with my mother without crying. I still cry, it just isn't around her.
When we spend time together, I take advantage of learning about her life from years past. I let her share her memories of her past and I feel a different kind of closeness.
I wish you luck!

psg712 · July 4

This is why dementia is called the long goodbye. Just when we adjust to a new phase of their decline, they take another step down and we are grieving another set of losses.

I think it's important to give yourself space to grieve the loss of the mom you knew. I also agree with the idea of embracing who she is now and appreciating the things you can still share. In the last months of my mom's life, I looked forward to the smile she gave me when I visited. That's all she was able to offer, but it mattered. Now it's what I miss the most, probably because I grieved other losses (loss of empathy, loss of shared memories, loss of abilities) along the way.

Another member of this forum recently described "tears in the parking lot." Maybe it would be helpful for you to focus on the things you can still share while you are together, and save the tears for the parking lot afterwards. I wish you peace on this hard journey.

SusanB-dil · July 4

I agree with psg712.

It is common to feel this way. Our LO is still with us, but they are no longer themselves. Folks who are dealing with 'this' know what I mean.

jen ht · July 5

Things I tried that helped me that you might try...

Bring a snack or treat.

Keep visits shorter.

Visit in common spaces.

Bring pictures to look through together.

Color or do another activity to help direct focus. Dad doesn't color, but sometimes I do. It seems to calm him that I am focused on coloring.

Check supplies and make a shopping list during your visit and chat aloud about it.

These may not work for you, but they may help you think of other ideas.

And yes, I cry in the parking lot A LOT. Short visits help this also… I smile and smile at dad as big as I can muster and rub his back and pat his arms and reassure him over and over and nod my head at him and give him thumbs up, etc. I can only pour it on for so long and then I sob.

The other day I did cry while I was sitting with him at breakfast. He was very out of it that morning (jarringly so) thus the tears, but he didn't notice. He didn't even look at me for the first 40 minutes or so. By the time he noticed me there my tears were dried. I stayed for my visit and then still cried in the car.

It is difficult. You will find things that work for you. Read lots here and you'll get more ideas too.

We understand. It takes a toll.

May we be well 💜

jht

Anonymousjpl123 · July 5

Others have shared such good insights, I’m just affirming that it’s very normal to have difficulty being around your LO as they progress and hit each new phase. I think as others have said, you will get used to it, then your mom will have more loss and the grief will be new, and on it goes. There is lots of comfort to be had in this community, and hopefully you find some support. It’s really critical, since your mom will be less and less able to offer that - and the more support the better.

Grieving her while she's still here

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