THANKSGIVING UPDATE-2009

I will try to decipher some things that Carol might be Thankful at this time in her rapidly declining life.  Some ideas that come to mind, in no particular order:

1. She still sleeps good at night and sometimes an afternoon nap with me.  We go to bed soon after it gets dark but I try to keep her awake until at least 8:00 pm.  She awakes soon after daybreak. Sleeps very solidly.
2. She is still is able to go to bathroom by herself but I usually remind her.  She seems to have a larege bladder which is something I am very thankful for.  A few minor accidents but not using Depends yet.
3. She is still able to walk though it is more like a shuffle.  A couple of trips but onlly one fall and this is another big thing -   Thank you Lord!
4. She still likes to eat and does OK in this dept.  I have to prepare food and serve her and then cut up her food.  Does not drink much unless I coax her. Try to keep a Coke out all day so that she will get some liquid.  Water is sometimes OK at mealtime.  Also Crystal Light Peach Tea.
5. Her sensory ability is noticibly declining.  Especially her smell and taste.  She now eats some things she hasn't eaten since we have been married.  Things like onions, brown bread, cottage cheese, sour cream, and even ate some of my corn beef hash the other morning. Her smelling ability has almost vanashed which makes my male bad habits go unnoticed.  I am not sure she hears as good but definitely does not understand most words.  Her speech is virtually gone except for a very few words or phrases.  Still says " I love you"  and Thank you.  Go is a major expression because she love to go places.  I call her my Go  Go  Girl. 
6. Not only does she profess to love me, she follows me around the house all the time.  Does not like to be left alone.  In the kitchen, she is right behind or beside me whatever I am doing.  But she can not really help anymore.  Still try to get her to help me put away the dishes from the dishwasher but it is not very successful.
7. Her favorite pastime is looking at pictures, or albums or picture magazines.  She acts like she is explaining what she is looking at but we seldom know what she is saying.  They call it babbling and it is so sad, because I know she wants to talk to me but most of the times she accepts that I don't know what she is saying.  I think it hurts me more than it does her.
8. I am thankful that Carol does not seem to realize how much she has lost.  It would be devastating to her and unbearable to live.  Sometimes, she cries and she can't tell me what is wrong.  I assume that she is experiencing some kind of realization that something is wrong.  She used to ask questions about her disease and if she would ever get well.  Now, I hear nothing but just witness the blank look on her face.  It is very hard to see her dieing a little more each day.  I think a big day of Thanksgiving will be when she gets to join Jesus in Heaven. 
9. We are especially thankfur for all our friends from the neighborhood and church who have been so kind by bringing prepared meals.  They have been excellant and much better than my cooking.  Many have also come by to visit and stay with Carol while I take a little break or respite.  You're great friends.  
10. We are both thankful to have a baby in the house 3 days a week when Addy comes to help us.  Carol does seem to enjon Caleb or as I call him-"bigaboy!"

Hope I was not too descriptive.  I will try to add some things as time goes on.   Love to you all!!!!! Bill

Some have asked if we could use your Help!!

I'm often asked by many of you, our friends, what you can do to help(?). It's hard for me to answer that some of the time. I've been encouraged to make a little list, (below). If you find it in your heart to choose from this list, or if it gives you another idea, we'll love and appreciate you even more! I have a Helper (from Ghana) that comes over three days a week for a few hours. She cooks lunch and does the laundry and other light housekeeping. But mostly, she entertains Carol by looking at pictures, or playing with her 3 month old baby boy that Carol loves. But Carol does not like it when I leave for any reason (except maybe a Doctors visit) and is angry when I get back. Almost not worth it. But Carol does like to:

Go to movies
Drive around the county
Drive through residential neighborhoods.
And of course go to Church.
She likes to eat out and her manners are not embarrassing, just a little slow
She likes people to come by and visit (but conversation is almost impossible)
She likes to look at any kind of picture. Mildred brought her pic’s of her mission trip to Ghana
I could use any kind of meal, (casserole, salad, sandwich, etc.) for evenings.
I also need conversation with other adults but that is hard because Carol wants to be included.

If you would like to help and any of these items appeal to you, I am sure open. Alzheimer’s is very hard on the Caregiver. The constant attention it requires is never ending. And it is so sad to see the one you love loose her brain right in front of you. Ronald Reagans daughter wrote the book “THE LONG GOODBYE!” which is very appropriate. We still have hope but it is not because of any cure that is even on the horizon. We hope they find it sooner rather than later.

Thank you, Carol and Bill

MIRACLE MEMORY

Today, I took Carol to the movie about Julia Childs. As we were walking from handicap parking, around the bldg to the theater entrance, Carol pulled an old memory out of her brain. When we were still about 20 yards to the few stairs, Carol reminded me that " right up in front is where you fell before" (or something like that!) The fall did happen but it was 2 yrs ago last Jan. There is nothing even close to this old memory that she remembers. When we got to the stairs, I pointed to the placed I fell and she seemed to agree. It was a very dramatic occasion. I was bleeding badly and had sore knee and arm. Someone called 911 and we were transported to the emergency room. Presbyterian Hosp, Rockwall, sent me and ambulance to Presby. Dallas because their MRI machine was out of order. Presby decided that main damage was a broken nose, but no concussion or skull damage. Guess that shows what a hard head I am. I thought I had damage to my right eye but Dr finally decided that it was Macular Degeneration. Thought you would get a better understanding of what Carol might have remembered. She does recogonize pictures of family members, especially her mother, father and of course her siblings and her children.




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What's it like from Carol's side of the brain?

It is so hard for us to understand what is going on in our Loved Ones (LO) brain. The brain is loaded with thousands of cells, jangles, protons, neurons, etc. All very complicated for most of us. But the end result is a lot of dead and dying cells. These cells do a lot of things like causing us to breath, smell, see, talk, eat, and most important to this discussion-----to think and remember. Carol has lost most of her long term as well as short term memory. She does not know what day it is. What your name is. Where we live. How many kids and grandkids we have. but she does recogonize a friendly face that somehow turns her happy and even talkative. But the words are very hard to make any sense. Sometimes we do recognize a word or two but a sentance is almost impossible to recogonize. But it is so hard to visualize what Carol is seeing or thinking. It has to be hard for her brain to not recogonize what is going on. What are people saying, What she needs to do, say or what!

Taking a bath is something that seems to go early. She really looses her composure in the morning at bath time. I think it has something to do with her pride. She has always taken her baths without any assistance but now she finds me drawing the bath, putting in the bubble bath and urging her to get in the tub. It really makes her mad. From her side, the part of her brain that gives her independance and she thinks I am taking it away. I am the bad guy. Sometimes I am the "Devil". Then when she is in the tub, it even gets harder. The use of soap and the reason for it have been lost. I try to give her help and instructions but again, that is her territory and I am intruding.

At meal times, I might ask Carol to hand me a knapkin but pointing at the holder. She sees the direction but has no idea what it is I am asking for. She might touch a fork, a saltl shaker, etc. Naturally it is frustrating for me, but think what it must be from her side. She wants to help and do something when asked but does not know what. And the sad part, she sometimes realizes that she does not understand what I am asking. All she might see is a table full of stuff that she can not name. I ask her to get the milk out of fridge and she tries to open the right door but has no idea what I am asking for. from her side, it is just more confusion.

She loves to look at picture albums and does recoganize people like her dad, mother, brother and sister and knows who they are. Not their names but at least the family relationship. She recoginizes the grandkids but not who they belong to. She does recogonize Carman and Eric but not when I am trying to tell her where we are going and whose house it is.

Carol's Brain has lost so many cognitive cells in her brain that she really can't carry on conversations, does not know the name of anything, can not put things away where they belong, or even know that we still love her. Her brain turns to anger when it gets confused and that is usually at her caregiver, which is usually me. These bad things are not her fault and I have to constantly remind myself that those things from the past are gone, apparently for ever. Yes, she dies a little everyday and that is very sad.

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Kitty is now KittyBoy

I took Kitty in to be neutered as required by the animal shelter. Came back the next day and the Vet had a surprise for me. Miss Kitty was a boy. so now we call herXXXX KittyBoy. He does not like the pink collar I bougth for his predecessor. But the reason for getting the kitty cat in the beginning has not changed. He is still a pleasure to have around the house. Carol lets him sleep in her lap or beside her quite often. He is g etting so big but still a kitten. After getting him declawed, she does not get scratclhe as much but still does not like the sharp teeth. does like the playfulness and just running around. Kitty and Bubba are getting along OK but the old cat still gets irritated by the youngster.

OUR LAST VACATION WITH Mimi

The following is an e-mail sent by the best daughter-in-law, Wendy, to my daughter Carman. I thought Carol's friends might like to see it.

"The picture of your dad holding your mom while she floated and sang in the waves clung to me as I think back about our vacation.

It struck me how much trouble your dad went through – first to get her into her bathing suit ,which was an ordeal in itself, then enduring the walk while she pinched him and complained, then the anger and more complaining as he got her past the waves and surf into calmer waters. She had so little understanding of what was going on around her and the joy that awaited her while he guided her gently and patiently to the sand bank.

This was such a good lesson for me and our kids of your dad’s love for your mother; but also of our Father’s love for us. How many times we complain and grumble when we do not like our circumstances and wonder where He is leading us. If we would only trust Him and know that He loves us and wants only good things for us. Then the uncomfortable circumstances -- the nuisance of water splashing on our face – will be so insignificant compared to the joy of being held in Him arms and being in His embrace.

Would it not be simpler if we did not fight Him, complaining all the way, but follow or be led and enjoy walking alongside the our bridegroom."----Wendy Eldridge

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BEACH VACATION

Our kids and I agreed to take a go at one more beach vacation this year. We selected a condo on Mustang Island, near Corpus Christi and rented a 3 BR Condo that slept 11 on beds and couches. It was cozy but real good bonding for all of us. One day we had a niece and her daughter and friend came to visit but stayed nearby in a motel. Carol certainly had some times of total confusing but most of the time she seemed very happy. She did like our walk out into the surf, 3rd bar where it was chest deep, or deeper at times. It was difficult to get her out there by me and daughter, Carman the first time. Our hands got squeezed strongly but then the first wave seemed to thrill her and she totally relaxed. So much so that her legs usually floated up and she was content to let us hold her up under arms. Stayed out a long time first and second days and would not trade that experience for anything. See the Post by our daughter in law, Wendy Eldridge, mother of 4 of our grandkids.

The 8 ½ hour drive down was very tiring but I did have my grandson, Alex, help with the driving, even though he still drives like a teenager. On the way back, I did all the driving and was very tired when we got back. But no problem in the car. A lot of signs got pointed out and described in her own unique language. Also had an hour or more of fun folding and unfolding a highway map. Had a few little naps going down but some much longer naps coming back. I had messed up her medications and gave her the evening meds, with her seroquel, in the morning before we left. She had some long naps with head bent over so far, I was afraid she would hurt her neck.

My daughter was an angel and helped me so much taking care of Carol. She helped with her shower and shampoo after each beach visit plus took her on some shopping trips. Son Eric also helped a lot, especially at the beach when I took some naps. Carman even shared her swim suit, and shorts with her mother. My blood pressure was high and I took more than normal. Have already sent a fax to my cardiac Dr about changing my dosage. I kept records of my high pressure. Eric’s and Carman’s kids were real sweet to MiMi, my DW, and she enjoyed all the attention. I know she will enjoy looking at all the pictures the kids took.

We call this our last vacation with MiMi but she has progressed more slowly at other times so another trip is possible but not very likely. Take your good, family trips while you can. The memories will surely last several lifetimes.

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