Communication Barriers

She was happy to see me yesterday. I’ve been so busy at work and then 5 inches of show on top of that, kept me away from Hillcrest this last week. She had plenty of Valentines so she didn’t entirely miss my cookie or chocolate, but when she saw me she reached out and grabbed me and gave me a smack on the cheek. I didn't even have the chance to tell her I brought her Valentine's.

The communicating is the hardest part. When I ask her straightforward questions she can answer “yes” or “no” or sometimes you’ll get an “I don’t think so” but when she starts babbling it’s hard to keep up. Yesterday she talked about the “others” and how they don’t notice her… so I start up with the questions: “Is it the nurses?” “No.” “Is it Bernice?” “No.” “What about the other residents here?” “No.” “Well then who?” “I don’t know, the other people!” The typical pattern is after a while she starts to get frustrated and then gets stuck on her words, so no words come out and then it’s all growling and mumbling.

Whatever she was thinking about yesterday she sure had a lot to say about it.

When lunch came around she was panting, and I couldn’t get the cover off the food fast enough before she started to poke her spoon around and shove food in her mouth. She fed herself, and mom said she hasn’t done that in awhile so I felt good about the day, in that she was chit-chatty and feeding herself. Also got a few stories from the nurses about her busy-butt going around in other people's rooms and getting into things. I'm continually amazed at how well she gets around in her wheelchair. She's got very strong arms.

The Ride is Over

The nurses finally put Grandma back on her regular schedule of meds this week. Today she wasn't very alert and slept the whole time I was there except for about two minutes. She opened her eyes and looked at me for a moment and reached out to pull me closer. I thought maybe she wanted to give me a hug because she was happy to see me, but turns out she just wanted to lay her head on my shoulder for a snooze :) go figure. That was fine with me. I read a couple of women's magazines to her while she slept. When it was time for me to go I had to wake her up enough so that she would eat some lunch. The nurses said she ate a really good breakfast (her appetite is back YAY).



Aunt Carol comes in to the Red Hat Society gatherings at Hillcrest and she got Grandma to wear a hat for the occaision. I remember when Grandma wore all kinds of hats when I was little. I also remember thinking that she looked very classy - almost too classy to live in a farm town.

When I said goodbye today I told her "I love you" and she grabbed me again, which I thought meant that she wanted to use my shoulder for some sleep, but she gave me a kiss on the cheek instead. I'm glad to see her calmed down now and a bit more focused. I think she knew I was there the whole time she was sleeping.

Less Meds = More Care?

I know that healthcare in the US needs major reform, but never has it effected me so much as now when I have to watch Grandma go through all of this needless discomfort because the State of Illinois and their regulations per dispensing medication to patients in assisted care facilities.

Yesterday Grandma couldn't control her hands or movements, so we spent the time just wheeling around Hillcrest about 50 times. She was communicating fairly well, and I asked her if my mom had been out yet and she said "no."

She has a new roomate, Bernice, who is very nice. She is a far cry from Selma, who was wheelchair and bedridden, and moves around by herself and goes down to the far dining hall for her meals. I asked Grandma about Bernice, and she says "I don't think she likes me." Then I asked why but couldn't get an answer out of her. So I asked her more questions "Do you snore?" Grandma: "No." Me: "Do you talk to her?" Grandma: "No." Me: "Do you run into her with your wheelchair?" Grandma: "No." Me: "Well then why do you think she doesn't like you?" Grandma: "I don't know!" I told her that wasn't a good answer, and that is her cop out if you start asking too many things.

After about the 50th or so time around the facility we went over to one of the TV areas and she saw a newspaper on the table and she asked me "What does that say?" I asked her if she wanted to read the newspaper and she said yes. After we sat down she ran her fingers all over the paper, as if she was reading braille, and I read articles to her. When it was time to turn the page she had a hard time controlling her arms to do so, and it took about 5 minutes for her to get coordinated enough.

I had to leave before lunchtime but I figured my mom would be coming out to help. She kept saying how hungry she was, but this time I wasn't going to cave in and give her some chocolate before lunch. I really wanted her to eat a good meal. Mom called me later to say that she ate most of everything and that she was really hungry. She wasn't able to feed herself or use her spoon because of her jittery-ness though.

Mom said that Diane (one of the nurses) wants us to tell her about Grandma's condition and reactions whenever we can. That way maybe we can move things along quicker and get her back on a regular medication schedule.

Busy-Body on the Loose

I talked to my Mom last night and she said that Grandma ate a good meal yesterday, for the first time in quite a few days, so I guess that we have to trust the fact that she will eat when she absolutely needs to.

This is the second week of the mandatory reduction in her medication. She is still agitated, can't stop moving her hands and is very jittery and has a lot of energy to spend wandering around, getting into other resident's rooms, etc. The nurses and all the aids there just kind of laugh at her in a good way because she is being such a busy-body. I really do like all of the people there and feel blessed that she is in a caring place.

Switching Meds

The last week or so Grandma has had to dose down on one of her meds, per a Illinois state law. The drug, (...begins with an R... I keep hearing the name but there are so many drugs out there I can't keep them straight), keeps Grandma from being so jittery and keeps her in control of her appetite and more specifically swallowing food. This week was hard because she couldn't keep still and she could only get a few bites of her food down before she started spitting everything out. Yesterday she ate a couple bites of her food and a couple of spoonfuls of dessert. Everything was fine for about five minutes and then she wouldn't swallow anything. I would put a spoonful in and she would spit it out. I managed to get her to drink about half of her milk and some juice. The nurse came by and gave her her daily dose of liquid laxative and she didn't drink all of that so I'm hoping today she will drink her full dose, otherwise then the nurses have to go the suppository route and I know she doesn't like that (and who does really).

We gave up on lunch after about a half an hour of spooning-and-spitting. After I said "OK let's give it a rest and get a cookie," she leaned back in her chair and put her hands to her head and just gave a big sigh. She knows that she's having a hard time and doesn't know why but is tired of it. I wheeled her back to her room and she managed to get 1/2 a cookie down before starting the spitting thing again, but I felt better knowing she had more food in her stomach.

Mom said that the last time they had to decrease her dosage, they went from three times a day to twice a day, and it lasted for a month. I don't quite remember it being that long last year, but you can tell Grandma is so uncomfortable and miserable even after a week so I hope they can increase her dose back to normal soon.

The best thing that Alzheimer's drugs do In My Opinion is slow down the decline of the disease. You won't see the symptoms go away and the person return to their old self, you'll just see a change in the comfort level and at this point, comfort level is all that matters.

Hillcrest documents her med schedule and a couple of the nurses there, Kandy and Diane, are really great about talking to mom and I about her dosage, and will look up the schedule if we have any questions.