so, it's April, huh? Times go by fast these days. But then slow in others. It is still really hard to see mom...wanting to be there, then just not wanting to be there.
Shannon and I went and ate lunch with mom this past Sunday - Easter Sunday. Its insane to think about how much she has changed since last Easter.
I walked in and mom was already sitting at the table. She was sitting up with her eyes closed...pretty much asleep. (It honestly reminded me of last Easter of her falling asleep in church.) I went up to the table, and tapped her...she didnt move...I could tell she was breathing, but that she was pretty much asleep. I tapped her again and said "hello mom!" She woke up. I asked her how she was and she said "good." I asked her if she was hungry and she said "yeah."
So, I sat at the table with her and gave her a bag of goodies...and told her I brought her something. She didn't seem too interested. We just sat in silence...very typical.
One of the caregivers came by and told me that they had just finished doing her hair and make up, pampering her so she is now relaxed and tired.
A few minutes later, Shannon came in and brought a gift for mom. Shannon sat down at the table with us and gave mom her gift....she really didnt seem that phased by it. I gave Shannon a bag of candy as well...she tried to get mom to compare her bag to Shannon's...I tried to help mom...but she didnt seem that interested in it.
Then the staff started to set up the lunch buffet line. After a few awkward minutes, Shannon went up to the line to get her and mom a plate, and I stayed at the table with mom. During this time, they brought us each our salad. I gave mom the salad w/Ranch dressing and took the one with Italian. I gave mom her fork and told her to eat and started eating my salad. Mom didnt seem too interested in eating. I honestly thought she was just waiting for Shannon to return because I've been w/her before when she won't eat until something or someone is in its place. So, I finished my salad and about that time, Shannon returned to the table w/their lunch, so I got up and went through the line.
I come back, and I see that one of the caregivers was standing up and feeding mom. I thought that was awkward, and really didnt know what to say, or even think.
"Why is she feeding mom?" "Is mom not hungry?" "Should I volunteer to take over feeding mom."
Then the caregiver pulls up a chair and continues to feed mom. In the mean time, Shannon is texting me telling me that while I was going through the line, the caregiver told Shannon that mom does not eat on her own anymore and has to be fed, or she won't eat.
So, now I'm baffled b/c I had no clue she wasnt feeding herself anymore...wondering how long this has been going on. And Shan texts me, "I think they should have told us about this." I agree and decide I will talk to the administrator before I leave just to see what is going on and how long it's been going on.
All the while, I'm still thinking, "this is awkward, should I tell the volunteer that I'll feed mom? Would that offend her? This is really awkward with her sitting here...and feeding mom...all the while trying to comprehend in my mind and digest what is happening...holding back tears b/c I dont want to cry in front of mom. What do I do? I want to run away...I want to cry...I want to scream...
I couldn't look at mom....I dont know why, but it was too painful to look at her having to be fed...
I know its part of the disease...for her to forget how to eat, how to feed herself...all that stuff....honestly watching her eat the last two years has been very disgusting and very painful...because she gets food all over the place...doesnt use her utensils correctly...
But I had eaten with her 2 weeks before...and she fed herself....she was as messy as ever...and my grandma was there...trying to tell her how to eat...she doesnt understand that mom will eat every last morsel of food on her plate...but that's a completely different topic...I digress
Anyway, I asked the administrator before I left about mom not eating and she said that she hasnt been eating by herself for a month....but I know that's not completely true because I was there two weeks ago and ate with her and she fed herself....she also told me I would need to talk to the nurse for more info. It was insane b/c of Easter (a lot of people up there...) and I was tired and ready for a nap like no other so I decided I would come back on Monday and talk to the nurse.
the nurse told me that she feeds herself...unless it started over the weekend...but that she needs a jump-start....that if she were by herself, or sat with people who didnt feed themselves then no, she would not feed herself...but the nurse told me she saw her feed herself her oatmeal that morning. The nurse did tell me that she usually has to prompt her to eat...maybe give her the first bite or two but after that she will pick up and go on in. But she told me that she would keep me updated. I told the nurse that I understand that as the disease progresses, she will not remember how to feed herself, or how to eat...I just wanted to know when that was happening. You know...not go and eat with her and be shocked.
All of this to say...just like Dr. Weiner said when he diagnosed her...this is a rapid disease...you are looking at most a few years from now having her on a feeding tube...in a nursing home. This disease is brutal...I'm glad that it is far more difficult on me than it is on mom. But still....it sucks.
The rest of our visit was for the most part, very pleasant. Mom drug us all over the facility...she loves telling everyone who Shannon and I are...I guess if anything has remained the same with her...that is it...she loves her girls...and for that I am grateful to be one of them and even more grateful to have my sister as the other.
