The Day will Come - but not Today

Day is done. Gone the sun. God is good. Ophthalmology appointment determined that Mom's vision has not changed in her good eye. It is still very poor, but it has not changed. In her left eye Mom has so little vision but there has been no significant deterioration to the internal part of the eye. We'll go back in 6 months.

Joe and I toured The Estates Memory care unit. You know, if Mom did not have a perfectly good place to stay, the facility would be more that appropriate. We were impressed by staff to resident ratio, the amount of activity going on and the low number of residents - 20 at this time with a max of 28. Our friend, Sid, was there. We have known him and his family for 16 years. His wife was Julie's teacher in high school and we attended Sid's Bible study. Sid was a tall, polite, gentle man, even as the Alzheimer's progressed. His family kept him in the home until he truly needed 24 hour care with eating, dressing, toileting and repeatedly tried to leave the home and became aggressive to his daughter who was his caregiver. Today, Sid was leaning sideways in a wheelchair having lost the ability to walk. He is fed by staff because he has forgotten how to do it himself. He is fed soft foods because he has forgotten how to chew.

One of the ladies sat in her wheelchair by the doors that open only with code keyed in, waiting for the door to open to either leave if she had a chance or to continue her job as the greeter at Wal-Mart, I am not sure which.

Others milled about the lunch room clearing tables, or sat in the living room listening to music.

So, the only conclusion I could come to was that Mom will not go there today. We have great care for her during the day. Becky knows Mom's moods and habits and changing moods and habits and goes with it - knowing when to push and when not to. And I have great support from Joe, Julie, Stacey, David, Micah and Levi.

Mom had a great lunch at Red Lobster with Becky and the retired teachers. She doesn't do fish but I heard she ate quite well of baked macaroni and cheese and french fries.

I want to add that I don't deny that there are moments I think I want my life back but then I am reminded that it hasn't been my life for a long time because in 1981 I have my life to Him to do with what He wanted. And today I know that this is what He wants. And His grace is sufficient.

For all of us!!!

Just the Normal Snags So Far

So, it has been a good week. Not that some weeks are bad, but this week we are rockin along in spite of what has become normal snags.
Have I mentioned what a miracle worker Becky is? Getting Mom to shower, brush her teeth, wash her hair, and change her pad? When I mention to Mom that she needs to change her pad and/or panties I get the glare and she rags on me to Becky about how I tell her what to do and she doesn't need me telling her what to do. As long as it gets done, I can take the heat!
Tomorrow Mom sees the ophthalmologist for a 6 month check-up. I don’t expect that Mom will be able to number one, understand his questions or statements and number two, respond to them. But if the doctor can get a look at her eyes, it will give me an idea how much her sight has deteriorated.
After that appointment, which usually takes about 3 hours, Mom has been invited to lunch at Red Lobster with the Retired Teachers in Burleson. She and Becky will be going there. Since Joe is off tomorrow, I am trying to arrange for us to tour one or two memory care facilities in the area to ask questions and get a better idea what is out there and hopefully be able to recognize when it might be time to move Mom to one of them. It is getting closer and I think it is important for Joe to get some information. And me as well. As a Social Worker in this county, I have been involved in placements and have visited a number of places. But it was never about my Mom.
Mom and Becky have been going this week to pick Julie up from work instead of me doing it. Becky thought it would give Mom something to look forward to in the day and get out of the house. So far it is working except that Julie misses riding home with me and giving me a rundown of her day. But she assured me today that she is on board with whatever supports me. She is wonderfully supportive!
Love you all!

Kicken Ass

So far do good today. In spite of Mom refusing to go to get in her pajamas and go to bed last night, today was pretty "normal".

Last night Mom insisted that she was not going to stay here, she was going to go to my house. She kept putting her shoes on, tried putting her pajamas on over her clothes, picked up her purse and folded up her blanket, insisting she was not staying her and was going to my house. After repeated efforts and telling her a number of times that it was too late, dark and rainy outside and I was going to stay her for the night also and we would go to my house in the morning, mom got into bed but promised she would not go to sleep. Earlier in the evening mom angrily expressed (in her own way) that she was going to kick some one's ass. Some short fat woman and her husband who had taken her pizzelle iron. And they had better not take her "Singer" or she'll kick their ass. Yep, she emphasized that a few times. She went on about that while I knew that the iron was in the box in the dining room and I told her that Joe and I would take care of it and it would be here in the morning. I figured she was still hanging on to that so I made like someone had come to the door and returned her pizzelle iron. I took the box to her room and she was very happy to have it returned. When I asked her if I should put it into her closet, she said no, she was going to take it to my house. We left it that way and she slept through the night after I assured her that the woman was not going to take her "Singer."

Today there seemed to be no indication that she was confused about where she was and expressed to Becky that Cheryl came to the rescue and got the pizzelle iron back.

Becky managed to keep her busy singing to the Alan Jackson CD that she likes and getting her nails done. The notes say that mom put Parmesan cheese in her coffee, so they started over with that.

Mom got her pajamas on and came out to say good night a few minutes ago. Guess I'll check in with her and get myself to bed. I'll bet you are all getting the idea that things are changing again here. You know I'll keep you posted. Love you all!

GOODmorning!

It is a good morning! We slept ALL night!

When Becky got here yesterday morning, mom was up and dressed (again) and eating her breakfast - still none too happy with me. While I finished getting ready for work, Becky engaged her in interesting conversation. I eavesdropped a little and heard the part about her not having any children and babies lined up and Deena being fed and diapered, she had two girls who are grown and married now, and no she is not Cheryl's mother or Bonnie's mother and she did not want to talk about Bonnie. We have a system whereby Becky makes notes about the day - here are some of her notes from yesterday: "was up when I got here...We had a quiz with memory - not so good; was very active, verbal and alert though her words were jumbled and I had to explain a lot; At 12:00 we went to "The Porch" and ate lunch with Cecil. (she loves men); she was so excited and repeatedly spoke of having a wonderful day; she laid down at 3:40 and fell asleep; up at 4:12; we went to DQ and got blizzards; very talkative and in high spirits."

I put Mom to bed about 7:30 and she is still there. Today it is raining and Becky may have to resort to that jig to keep Mom entertained. Yesterday when I mentioned in #4 that if the above did not work" and I wanted to explain that 99% of any effort failing or succeeding when it comes to Mom is dependent on Mom - her mood, her willingness, her stubbornness, whatever is going on or not going on in her mind. Some days, it is just easier and better to let it go than to allow an effort to become a confrontation and battle of wills. That isn't good for her or us. Just wanted to explain that a little further.

So, Mom's breakfast is on the table for when she gets up - on her own or otherwise, and I have to finish getting ready for work and head out in the rain. Honestly, it really is a good day to crawl back in the cozy bed!

God is so good and we are so blessed by all of you who love Mom and us.

It Is What It Is

Yes, I did say that I should post more frequently, but this is not what I had in mind. It is 2:30 in the morning and this is the third time I have been up with Mom. In spite of the fact that I have the monitor right beside me on the loudest setting, I missed the first time a little bit. By the time I awakened, Mom was fully dressed at 11:00 and sitting at the kitchen table having coffee and a Nonni. During the day, we keep what coffee Joe and I don't drink before work, in a carafe that keeps the coffee warm throughout the day. Mom had poured her coffee, put the creamer in and dunked her Nonni. I put a confused but fairly compliant woman back to bed in her pajamas and clean underwear and said good night. Time has no meaning right now, but the next time I was awakened by noise from her room, I found her standing beside her dresser with the drawer open, pushing a pizzelle into her mouth like a little chipmunk. Remember? Mom had hidden them in her room the other day so that they would not be eaten by Stacey and David and to "save some for Becky." I offered her a glass of water but she refused. Back to bed. A short time ago, since I had not been able to fall back asleep, I heard her up and met Mom in the kitchen turning the light on again. She sat at the table while I started her laundry, cleaned up the living room, loaded the dishwasher and put a clean cloth on the dining room table. When I shut the overhead light off in the kitchen and turned on the light over the sink suggesting that other people needed to sleep, Mom did wander back to her room where she is lying on the bed with the light on in there.

I only mention all of this at this hour because I may need witnesses at my trial to the fact that I was sleep deprived and not in my right mind.

New strategy today:

1. Becky is not to let Mom sleep past 9:00 but is to go in and clean her bathroom and turn on all the lights and get her up out of the bed.
2. If Mom is back in bed still by 1:00, Becky is to tell her that lunch is ready and to get up to eat it.
3. Then, Mom is not to go back to bed. They can sing, do the jig, walk the dogs, go for ice cream, whatever - but she is not to sleep the afternoon away.
4. If none of the above work, I may meet you here tomorrow morning as well.

Thanks for keeping me company in my heart and mind as I think of you and your love and support for Mom and for me. I love you all! Goodnight! or should I say Good Morning? Either way, GOOD is the operative word!

FUN is in the Eye of the Funned.

I'll start out with the old stand-by, "has it been a week already?" And yes, "time flies when you're having fun." So this week I'll tell you about a little bit of fun Mom has had.

Becky has taken Mom out to lunch a number of times, as you know. We have figured out a few places to not go, but besides IHOP on Saturday night, a new little Italian restaurant in town is a safe place because it is not so fast-paced busy and they know us and treat her great. The other place Becky has found is Golden Coral in Burleson. Becky has taken her there several times for lunch and they always meet up with Becky's mom and dad there. Mom talks about them and how they have "special" seats there and how she says funny things that make them laugh. So, this week, for Julie's birthday on Tuesday night, we went to Paisano's, the Italian restaurant, where they had cheesecake just for her and she had a great time even though Stacey and family were there. Then, during the week, Mom asked Becky if they could go to Golden Coral for lunch. Becky reports that she not only asked to go, but when they got to the restaurant, Mom pointed out Becky's mom and dad across the room! Now keep in mind that Mom's language is not quite like yours and mine, but we can usually figure out what she is trying to say.

Mom was having a good week. But that's not all of it! I took the day off from work on Friday so that I could do the cooking for the Taste of St.Bart's Fall Festival on Saturday. The booth I was working in was, what else, the Italian booth. I had obligated a big pot of sauce and several pounds of Penne Pasta. As an added food item this year, I decided to make pizzelles too. I got my puny little waffle iron out and mixed up the batter, all the time talking to Mom about "the Feast" and making pizzelles and the recipe and saying Hail Mary's, hoping that something would sound familiar to her. I could not find the "original" recipe so I was using one out of a recipe book. I asked Mom for her recipe and directed her to her recipe box, which she could not find and "someone stole it" but I found it and Mom sat going through the box mostly unable to read what was on the cards except for a few words. All the time I was talking to her about the recipes and other things. I showed her how my pizzelle iron was not heating evenly and asked if I could use hers. Mom did not know she had one, but we were able to locate one in her room and I heated it up. More talking and Mom got bits of memories about "my Italian ladies at the church" and the pizzelles needed to be stacked in sets of 12. So she stacked - 1,2,3,4,7,9,12. But they were stacked to her satisfaction. When I got tired I asked if she would take over. So she stood teaching me how to do it like the Italian ladies at church. She dropped the teaspoonful on the iron and closed it and I took the pizzelles off when they were done. We finished the batch and Mom was exhausted. So was I, actually.

That evening we had Stacey and family in for dinner for Micah's birthday. David's mom from Oklahoma and his sister from one of the Carolina's was here also. Joe had put a roast in early in the day and we had birthday cake. Mom enjoyed the dinner with no problem and kept trying to give everyone some pizzelles to taste after dinner. People were more interested in the chocolate birthday cake, but the hostess in Mom needed to get out the homemade pizzelles to go with coffee after dinner. She had a good day.

And of course yesterday, was church day. Mom came out of her room dressed in the morning amid all of the chaos of getting everything ready to take up to the church for the festival. When I advised her that she looked very nice but that after breakfast, I was going to help her with a shower, I experienced the "if looks could kill" face from her. She had no intention of bathing or having anything to do with me. When I joined her in her room Mom was changing into a short sleeve shirt so I reminded her about the shower and that it was Church Day - no shower, no church. I helped her undress. Once in the shower it took reminders to pick up the soap, use soap, wash this part and that part, here is the wash cloth, wash your face, turn off the water, push down, no the other way... Mom and Joe went to mass last night after stopping by the festival for a few minutes. I did not join them. And of course, there was IHOP afterwards with Joe, David and Rosaline, David's mom.

It was an unusually active week for Mom and she enjoyed the interaction. Unfortunately her nights were active as well. At 3:00 a.m. one morning, I got to Mom's room and she was dressed and putting her shoes on. It took some yawning and grogginess on my part to convince her that it was not time to get up and I was going back to bed for a few hours so that I could go to work in the morning. I got her settled down without her shoes but still dressed. On another early A.M. I heard Mom yelling and got to the laundry room where she was standing in the open door to the garage yelling at someone.

And that's the way it is, as Mom would say. Perhaps if I took time throughout the week to make some notes here, I wouldn't have to publish the entire book at one time. Food for thought - when I have time to think. Love you all!!!

Goodnight - again

It is 8 p.m. Sunday night. Mom has been to bed twice. The first time at 5:30 after having cake and ice cream with us, Mom came out of her room in her pajamas to say good-night. In spite of our urging, encouraging and engaging her to stay up longer, she went to bed. At 7:30 Joe came to the bedroom where I was ironing, to say that Mom was up and dressed and sitting at the table waiting for breakfast. It took me about 30 minutes to get her back to bed by doing the things that we normally do before turning in like covering the birds, starting the dishwasher, setting up the coffee pot, putting the little dog in the kennel and checking on locked doors. Joe gave her night time pills and water. Finally she headed back to her room and was lying down fully dressed when I got in there. I made light of being confused after a short nap, thinking that it should be morning when she refused to put her pajamas on. With more cajoling, I got her out of her slacks, into badly needed clean panties and Poise pad and her pajama bottoms. When I handed her a wet wipe to wash her hands after handling the soiled items she began taking her pajamas off again and I instructed her how to use the wet wipe on her hands. Getting the pajama top on went better but as I bent over to help her get her pants off and on, I knew I needed to empty the waste basket a short ways from my nose. So I did that while trying to get her to take her socks off. The trash went but the socks stayed. Mom is in bed again.

When anyone asks how Mom is doing, I don't know what to tell them. More of the same? Not really. That could mean that today is no different from yesterday or last week. When I say she is getting worse, it doesn't fully express the day to day deterioration. That was my response to Deena again this week when she called and Deena gave an understandable answer of "we knew that was going to happen." I am sure she did not know the impact of those words until she spoke to Mom on the phone that day. The tired side of me wants to say "welcome to our world" but the daughter and sister side of me knows the moment of grief she must have felt.

When I can sit with Mom and do her nails before church on Saturday at 3 and at IHOP at 7 she tells us about the "lady" who did her nails, we know she is worse.

When she can be downright cruel and on the verge of abusive to Chi Chi, Stacey and David's little black dog that they dropped off her on Friday before they drove to Tulsa for a wedding, we know she is worse.

And the next day as we leave for church, Mom asks where that cute little black dog came from and I tell her we are dog sitting for a friend, we know...

• When Mom puts creamer in her glass of water, we know...
• When I have to tell Mom which body parts to wash and to use soap, we know...
• When I find my shoes and other items from around the house hidden in Mom's room, we know....
• When I am cleaning feces off of her, the floor, the bathroom counter, washing her soiled clothes and sheets...
• When Mom goes to IHOP every week and meets the same people for the first time every week, we know ...
• When Becky takes her out for lunch and she throws the food across the table yelling "I'm not eating that", we know ...
• When Mom looks in the mirror and sees the "curls she was born with" and we see frizzy long hair and a resemblance to Einstein....
• When we are up too many nights because Mom is up or she is yelling and thrashing in her bed from a nightmare....

And we grieve.

AND we rejoice when Mom remembers the first few lines of the Lord's prayer

• And when Mom puts all of her jewelry on just to hang around the house
• And when she taps her foot to the songs on the country legend station in the car
• And when Mom looks the menu over carefully and orders strawberry pancakes - again
• And when I put her to bed and she calls me sweetheart - like she knows I belong to her somehow.