Slow fade

psg712

Just venting some sadness to those who understand...no dramatic changes with my mom (today), but the slow fade continues. I sat with her at dinner in MC today. Had to put the spoon in her hand to get her to eat a few bites of soup. She's handling finger foods best now. Had a small sandwich but didn't pick it all up, just took off the top slice of bread and ate it. When I tried to hand her the fork with some meat on it, she just opened her mouth for me to feed it to her. She is losing weight. I noticed temporal wasting for the first time tonight. She looked at me when I spoke and smiled when I showed her a picture of my son and his dog, but didn't respond verbally to anything I said.

I know that her lack of response is partly related to the time of day, but she is also less verbal than she used to be in the mornings too. I am grateful that she is not agitated (the rare occasions when she has acted out were all episodes of UTI) and that she seems mostly tranquil. I know that is a huge blessing. But the feisty, energetic, competent and insightful person who raised me is obscured almost completely by this disease.

Thanks for listening. Most people who knew her simply do not want to hear it. They would rather remember her as she was, that is to say, without the challenging parts of her history. Almost like the eulogy at a funeral in which we respectfully don't mention the character flaws or the hurtful events of the past. But she is still here ... in a very altered state. By the time we get to a eulogy, I'm afraid I won't have the bandwidth for the musings of the mourners. I'll be too tired from the long goodbye.

Quilting brings calm

When the time comes, you do as much or as little as you feel comfortable with. My mom didn’t want anything but a graveside service. I honored that … and it was all I was up for anyway. I did the bare minimum notice in the paper, with a complete obit at the funeral home. I notified who needed to be notified. I didn’t care if anyone came. Several people did come and we had a meal at a restaurant during the 16 people who showed up there.

jen ht

With you in spirit psg and Qbc. 💜 I am reading your words and thinking of you extra today. ~jht

SusanB-dil

hey @psg712 … ((hugs)) yeah, 'this' bites! We do understand and I feel for you.

psg712

Thanks to all for your support. It's good to have people who get it! I also appreciate the family and friends who are well meaning but truly don't get it ... they love her too. I need to keep that in mind. I just get weary and then start to lose patience.

Qbc, when it's over, I wish I could just do a small service where I live, without any fanfare. But mom's prepaid arrangements are in her home state, 400 miles away, and her gravesite is there too, next to my father's. So there will be travel, and old friends to see, and extended family who haven't seen her in years will show up ... and I will have to be a courteous (exhausted) hostess to everyone. The nightmare of every introvert! But we aren't there yet. One day at a time ...

CaliforniaGirl-1

I am in a similar situation with my very, very elderly LO. It is a steady decline. The analogy I use is that mentally and physically it is like a train slowly pulling away. But I tell myself that she is well looked after and treated with respect and affection at her MC. She still seems to know me and is not scared or unhappy or in pain and I believe and hope (and tell her) that she knows she is loved. Even in just the last few years there has been an enormous change, like a blackboard being erased.

I miss the person she was and the relationship we had every day. I think about picking up the phone to tell her something she would have liked to hear. I hope when the time comes I will remember her as she was and not the horrible years of struggle, exhaustion and crisis to get her safe.

Having been through loss even with parents who are not PWD the fading away is not uncommon in the last years.

It is possible to be grateful to be where we are (my LO is safe and well cared for) and sad at the same time. But when I get too sad, I look around and remind myself that we are very, very fortunate and it was a long struggle to get to this point where we have the time to think about things and feel sad rather than terrified and exhausted as we were for years trying to get to this point.

Anonymousjpl123

I am right there with you. My mom hasn’t gotten to where your mom is yet, but she’s moving in that direction. I feel farther away from her. It’s such a huge change for you - you are with someone whose brain is not the same as the person you knew.

This altered state version is who we are with now and it is very painful but also a gift. We can try to stay present and realize everything is temporary.

You can do this. You are doing great.