Thursday, December 8, 2011

Cantabile Holiday Concert & Grandma Ann Update

All three big kids performed in the Cantabile Holiday Concert with their Prep 1 and Prep 2 classes. They did a demonstration class, performed some songs, and had a little party after each class. Since our three kids are split over 2 age groups, we got to stay for all 2 hours.

Baby M. and Grandma Ann taking in the show.

Grandma Ann was able to come and seemed to enjoy the show. Dementia is a funny thing. She is aware of her grandchildren when they come up to her individually, but when she saw all the children performing in a group, she had a hard time locating each grandchild. She cannot remember how many grandchildren she has altogether, which would include Bill's nephew and Baby M. She has 5 all together, but she says 3 or 4 or doesn't answer at all when someone asks her.

Gordo front and center right in front of Teacher Natalie - the littlest ones went first

It may have been too overstimulating for her with the music and the excited children, though they were both rather small classes. She stayed for most of the party before deciding she was ready to go home. The kids were thrilled that Grandma Ann came to see them perform. They've never had a Grandma come to any of their performances before. (well, once, my parents came to see Sweetpea's ballet recital, but that was years ago.)

I got an Alzheimer's Playbook for Caregivers in the mail from Phi Mu Foundation. It was written by an Arizona football coach about his wife(who was a Phi Mu) and what he learned about dementia along the way. It is an easy read and quite informative. I remembered it from the 2008 Convention so I called and asked if they had any copies left. They had one copy left and sent it off to me right away. It has parts that are hard to read, but it's also good to be prepared for what is going to come. 

It is quite obvious to me, and I'm no expert, that her dementia is quite advanced, and we were misled about her cognitive level. She was not "just fine" as her assisted living facility had told me in February when I asked them specifically if they thought she was not competent enough to sign her new apartment lease. Liar, liar, pants on fire. I said, well, if she is "fine" then go upstairs and ask her to sign the contract. I told them that as her DPOA, Bill could only act at her direction, and if she wanted to keep living there, he could not go against her wishes.

We also have no idea how many times she really fell. The assisted living facility only reported two falls to us in the last year. One of her private caregivers told me she had two falls during the night shift in the last six weeks alone. Since she fell on her first day here and we had no medical history yet, she had an MRI and a CT scan and an EKG and x-rays and bloodwork done at Stanford Hospital. They revealed an old head injury with a brain hematoma, a series of compression fractures in her spine that were old and healing very slowly, and a bedsore because she was not being turned over in bed. She cannot roll herself over in bed really. None of this was reported to us while she was there, and I'm not sure if her doctor in Mississippi even ordered all these tests or was aware of the bedsore. Hopefully, we will get the medical records soon.

We feel very lucky that she did not break anything. She needed a couple of stitches on her eyebrow, but she doesn't remember falling. Finding her on the floor next to the bed with a cut eyebrow was very traumatic for me and the boys and it is amazing that she does not remember that. I was afraid to move her so I called an ambulance and she doesn't remember the ambulance ride to Stanford either. Her eyebrow healed very well and her stitches came out easily luckily. Toto showed her his scar next to his nose where he had stitches once, so now he feels like he and Grandma Ann have something else in common.

She is unable to tell us if or how many times she fell in the last year. The caregivers here did note that she did seem to go rigid upon transferring which would seem to indicate she has a fear of falling. She does occasionally say funny things like: "they won't let you fall here in California." Which I guess she thinks is a good thing. :)

One of the oddest things I have learned about dementia is that people forget how to do things like act or talk. Maybe everyone else knows this, but I did not. We will go into a place with her, where we have never been before, and she will just randomly announce "I'm Bill Jennings's mother." She also has a hard time talking, having a conversation. She can respond back, but has a hard time starting a conversation. So unless I remember to ask her something, she might just sit quietly for 15 minutes staring off into space. Then she looks antsy and wants to stand up and "go to the kitchen" - I'm not sure why. She forgets that she cannot stand up without significant assistance and has no reason to just walk into the kitchen.

One of the nicest things that was in the Alzheimer's playbook was an explanation of what a dementia patient means when they say they want to go "home." Home is not necessarily a place - it is more of a feeling, a feeling of being safe. Sometimes, she thinks she is in California. Sometimes, she thinks she is in Mississippi getting ready to come to California. Sometimes, she thinks she is back in East Tennessee.

One day she told the physical therapist we were all moving to Texas! I quietly explained to the therapist that we are not moving to Texas. Another day she told me she heard her husband Bill's voice, and he's been dead for 17 years. I had no idea that hallucinations were also a part of this disease. So at least now that she's been here for a few weeks she is starting to feel like she has a safe place to go "home" to after we've had her out galavanting around town with us. She will say "I want to go home" when she gets tired, and once she's in bed she'll say "it's good to be home." 

We are still working on getting her a new portable oxygen tank so she can be more mobile. I'm learning that Medicare billing is a real bitch. (sorry). Apparently, the doctor wrote 492 instead of 496 on the diagnostic code so it'll be another 5 days before we get the portable unit. For now she is using a big clunker that she can barely get around with. She doesn't care, obviously, she's not aware, but it's a big hassle for me and Bill to move it around with her at the same time. And she needs it all the time because she desaturates very quickly. Today she dropped from 94 to 87 in a matter of minutes (while the physical therapist was observing). The therapist wanted to see how quickly she de-saturates so now we know. We're not supposed to disconnect her even to transfer her from bed to chair or chair to bed. We need to be more careful not to sit her in a room with a fireplace on, too. She sure requires a lot of maintenance for such a sweet little old lady. :)

We are so lucky that she still remembers me and Bill and that her sweet personality is still intact. I know that will change one day, but for now, we get to enjoy her and have the kids build up some sweet memories of Grandma Ann.

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