Nov. 22, 2012

Thanksgiving

Kennedy shot

Things seem to be unraveling around here. Woman who stays with James when I go paint now has a full time job. How will I find someone he likes and is trust worthy? The woman who comes Monday afternoons so I can go play cards can never get here in time for me to get a place at one of the tables. And now I get a letter from the bank saying one of my accounts is overdrawn over 1,000.00. I didn't even know I had “overdraft privileges”. Did my 3,000.00 deposit not get posted? Or did the people I thought stole my identity do their first scam? I will know as soon as the bank opens. Will that be Friday or next Monday?

My house is a mess. My kitchen looks like there has been an explosion.

James is slowly going down hill. Thank goodness he still knows me, is easy to get along with and can still go places.

The good news – our oldest granddaughter is pregnant.

This post is so negative, I'm not sure I will even print it.

I SHOULD HAVE GONE TO WALMART'S

My printer ran out of two colors of ink, yellow and black. I started a list that said, ink yellow with the symbol for yellow, I think it was a circle, next item was, ink black with the symbol for black; it think it was a tringle. I put it in the front seat of the car for the next time we went to Walmart's. But I hate to go to Walmart's so it stayed in the front seat for several weeks.

EVERY TIME WE GOT IN THE CAR James would pick it up and ask what it was? Well what were the symbols? Have we bought it yet? Can I throw it away? Where do you want me to put it? Can I throw it away? He wadded it up a couple of times. Once I found it back in the kitchen on the counter. Took it back to the car. We must have gone through this list of questions and answers 50 times. I would have been way ahead if I had just made a special trip to Walmart's on the first day. Why didn't I? (Oh no; don't start the questions again.) Well I went to Walmart's yesterday and bought the ink cartridges. I tore that piece of paper into little bitty giblets.

Now I realize that is not one of the large problems in the world of Alzheimers. It is one of the small problems that we can laugh at. We are so afraid of the big problems that may be to come that we need to laugh at these little things. We are so afraid the day may come when we won't laugh again.

OLD PICTURE

OLD PICTURE

Ran across this old picture yesterday. Doesn't he look healthy and vigorous. He used to love cold weather; so I am sure he was enjoying life. Wish I had put a date on this photo. We've had good years together.

Today we had lunch in Tyler. He thought they were being a little slow in serving us.

Have they taken our order yet?

Yes, they have.

They sure are slow.

I just agreed; it is easier.

Do we eat here often?

No, never eaten here before.

Are they always this slow?

What to say? So I just said yes.

Well I think we ought to quit eating here if they are always this slow.

You are right. We will find a faster place.

We always have something to talk about. Sometimes it is the same conversation over and over.

Sometimes when he asks if we have ordered yet, I tell him yes and that we have eaten – would he like some dessert? But somehow he knows I am kidding.

IT IS THE LITTLE THINGS THAT UNDO US

Bobby, had a great time at your birthday party. The trip home was a little stressful.

There was a wreck between a small car and an 18-wheeler right in front of us on a bridge. The man behind us stopped so I did not- James would have insisted on getting out to help -- he does not remember that he has difficulty in walking much less that he is sick. 

Got home and the air conditioner was not working - 92 degrees in the house. Went to Lucky's and got batteries for the thermostat. Also got beer for James and ice cream for me. Put new batteries in and low and behold it started working again.  As my friend said "I get really tired of doing all this "man stuff" that I don't know anything about".

Finished all that and went into living room ready to relax and wait for the house to cool down. JAMES WAS EATING MY ICE CREAM!!!!! I almost cried.

Bobby, had a great time at your birthday party. The trip home was a little stressful.

There was a wreck between a small car and an 18-wheeler right in front of us on a bridge. The man behind us stopped so I did not- James would have insisted on getting out to help -- he does not remember that he has difficulty in walking much less that he is sick. Got home and the air conditioner was not working - 92 degrees in the house. Went to Lucky's and got batteries for the thermostat. Also got beer for James and ice cream for me. Put new batteries in and low and behold it started working again. Finished all that and went into living room ready to relax and wait for the coolness. JAMES WAS EATING MY ICE CREAM!!!!! I almost cried.

Bobby, had a great time at your birthday party. The trip home was a little stressful.

There was a wreck between a small car and an 18-wheeler right in front of us on a bridge. The man behind us stopped so I did not- James would have insisted on getting out to help -- he does not remember that he has difficulty in walking much less that he is sick. Got home and the air conditioner was not working - 92 degrees in the house. Went to Lucky's and got batteries for the thermostat. Also got beer for James and ice cream for me. Put new batteries in and low and behold it started working again. Finished all that and went into living room ready to relax and wait for the coolness. JAMES WAS EATING MY ICE CREAM!!!!! I almost cried.

I CAN TELL WE ARE OUT OF MILK

I came in from working in the yard the other morning and went to the frig for cold water. On the counter next to the frig were 4 bowls of cereal with sugar on top of them. I thought, “oops, we must be out of milk”. Sure enough there was a gallon milk jug with not a drop of milk in it.

I have been working outside in the garden and flower beds in the mornings. I hose myself down before I start and it is pretty cool for about an hour. That is when James decided to have cereal.

GOOD TIMES, BAD TIMES

I guess we have settled into living with dementia. Some times are good and some times are not so good.

The other day some ladies were here playing bridge. It was my time to bid and James came wondering in from the bedroom and stood behind me. He said “You're not going to let her bid are you? Especially with that hand”. And we all laughed; that is exactly the kind of thing he would have said before he got sick.

A few days ago my friend, Karen was saying how upset she had been but she went home and talked it over with her husband and then felt better about the whole thing. That was a little unexpected knife thrust into my heart. I will never again be able to talk things over with James and feel better about them. Not Karen's fault – just a fact of life with dementia.

I still thank the Lord he is easy to get along with. He has gone down physically a little more. Doesn't walk as well.

We are having a wedding in the family this Friday night – our daughter's daughter. There are all kinds of contingent plans made for James. If he gets restless at the reception or whenever, our son will take him home and stay with him and I can stay for the festivities. And I expect that to happen. His patience are thin and he gets bored easily when he is not at home in his own little nest. He won't remember the wedding by the time he gets home and we could easily get someone to stay with him but then we would not have him in any of the wedding pictures.

There is a picture of my grandfather who died before I was born. Every time my mother would see that picture she would remark, “That was taken after he got sick”. I think James in these wedding pictures might be like that.

GOOD NEWS

More neurological testing but this time we got some reports back.

He has a mixture of Alzheimer's and vascular problems having to do with his heart.

Biggest problem is memory.

He doesn't recognize that things have changed and is overwhelmed by all that is out there. Can't make decisions because too many choices. The reason he sometimes wants us to decide where to go and what to order for him.

Language ability is still good.

Thinks much slower than other people. It is like he is running to keep up.

Lives in the moment. No tomorrow and not much yesterday.

I asked if we could expect him to remain easy to get along with or if we should expect aggressiveness and possibly the violence we hear so much about. She said she had seen many patients remain easy going for the entire illness and since he had not had personality changes by now there is a good chance he will remain as he is. Thank Heaven.

His attitude has been the biggest blessing we have had and it is such good news to think we might continue to have it.

We have had many blessings during this and I can't help but believe it has to do with all the prayers I know are said for us; I thank the Lord as well as all the family and friends.

YEA! YEA! YEA!!!

It finally happened! I have gotten respite care. It is through the VA. We only get 2 ½ days a month; it may not sound like much to you but it is a lot bigger number than 0. I have been working on it since February. I am still working on more but am also celebrating on this. Yea, yea, yea.

I AM JUST ABOUT WORN DOWN

As most of you know, I am trying to get some kind of periodic respite care for myself without putting James in a nursing home. So far I am unsuccessful. I am fairly intelligent. I am fairly articulate. Yet I feel that half the people in the U.S. with half my intelligence and half my verbal ability have managed to get a whole lot of what I want just a little of. How is this possible?

 

 

 

 

RESPITE

Thank Heaven for family and friends. 

My children, my doctor and my pastor have been on to me about getting some time off from caregiving.  And I am working on it. 

I started realizing how right they were when I began to be aggravated at people over trivial things.  A lady sat down beside me and she had on sandals and had a French pedicure on her toenails.  I thought to myself “well la-t-dah, look who  has time to have a pedicure while others of us have to live in the real world”.  I realized while I sat there that it was a stupid attitude on my part but I still felt that way.  I also got aggravated at a man telling me about his bad cold when my husband has everything in the world wrong with him – none of them curable.  It was only by the grace of God that I did not say anything sarcastic.  I am very talented at sarcasm.

When you have been out of circulation for as long as I have, it is hard to get back in.  I have a lady coming to stay all day with James every other Thursday.  She is an experienced caregiver.  I plan to get together and paint with some people I used to paint with.  The first day is day after tomorrow.  Fingers crossed. 

I am going to take beginner bridge lessons on Monday mornings.  I don’t have a firm commitment for those days but one of the Methodist Men is staying the first day and I am planning for the other days to fall into place.

The Methodist Men have been so wonderful.  They have been picking him up and taking him to their once a month meetings for a couple of years now.  And some of them come get him to go to lunch and do errands.  He is a little bit more trouble now since he is on a walker but no one has complained.  They have been a God-send for me. 

Of course my children have been wonderful.  Missy spends one day a month with him and Laurie spends one day a month with him.  They do odd jobs while they are here, tidy the kitchen, lay out Jas’ medications, etc. – so much help.  Drew comes down and spends a day often and does “fix it” things, services my car, changes light bulbs and heater filters and nails things back together that have come apart.  He nearly corked himself working on the sprinkler system last Summer.  Then they took turns last Summer and gave me a week off for a road trip with my cousins.  I had never done that before and I just loved it.  One of our granddaughters is living with us until May and she has been so much support.  They have saved me; if they had not been doing this, I would have been committed by now.

I have already had lots of support and really do appreciate it.  A caregiver needs lots of support to stay sane.  And I plan to stay sane – at least as sane as I have always been.

OUTSMARTED MYSELF ----- AGAIN

Do you ever outsmart yourself?  I do.  We finally got James to quit drinking a six-pack of Budweiser every night.  We switched it to O’Douls which is non-alcoholic.  So now he doesn’t walk into walls and fall on the way to bed.  I was afraid he would fall and break a hip and then be bed fast.  When I would bring in hot beer I would usually put a couple in the deep freeze to hurry and cool off.  So I put in a couple of O’Douls the other night.  He did not drink them and the next morning they had frozen and exploded all inside the deepfreeze.  He kept saying he did not think beer would freeze.  I kept saying I didn’t think it would either.  It finally dawned on me – no alcohol it freezes!   Duh!!!

A SAD DAY

Spent the whole day in Dallas at doctors Tuesday.  Exhausting.  Got another neurology opinion.  She agrees he has all the signs of hydrocephalus.  But she does not recommend treating it.  With all the other things wrong with him the improvement would be so minor and the treatment so invasive.  They would drill a hole in the skull, go down into the center of the brain where the fluid is and put in a shunt from there down through the neck and into the stomach to empty the fluid into the stomach.  She said she would do whatever we wanted.  The children and I had already agreed that he had been through enough torture.   When asked what he thought, he said he would do whatever we thought best. 

I asked why it took him so long to stand up from a chair; she said it was part of the Parkinson’s and also the  neuropathy (I hope I have the right word here – lack of sensation). 

A sad day. 

NEW ROOMMATES

 New roommates!!!!!  Kelley Anne and Gunner moved in with us this weekend.  They will be here until May.  Missy said “GET READY FOR A NEW LIFE”.  I am looking forward to it.  My poor cat, Cyril, is about to have a nervous breakdown.  Gunner is a two year old yellow Lab, weighs about 70 pounds.  A truly handsome dog; he could be in movies.  And soooo sweet.  And energy like you have never seen.  If he were a child he would be on Ritalin. 

Kelley Anne is just as beautiful and just as sweet and a nice, calm person, easy to be around – not at all like Gunner.

ANOTHER SEIZURE

He had another seizure.  Now he is taking anti seizure med - Keppra.  Each time he has had one for the next two or three days he is in worse shape mentally and physically.  The day after he had it he was sure he was in South Louisiana and that he had driven the truck home form the well site.  The Pickens knew this but he needed to get back working.  He has been sure we dropped someone off someplace and can't remember who it was.  He was still doing this last night.  We bought him one of those 4-prong canes but he doesn't use it well.  Half the time he carries it not toughing the ground.  I am finding this very sad.

I was just about used up Saturday, so glad Kelley came and spent the day.

We will go to sunday school and church today.  He always wants to do this.  Hope it will be good for him.

A LAUGHING MATTER

Darling now wants someone else to order for him in a restaurant, not every time but often.  Sometimes it is not easy to do.

Miss stayed with him one day and as usual they went out to lunch.  She says he wanted her to order and wanted to discuss what was available.  Then when the waitress is standing there ready to write down the order, he wants to talk some more about it.  So when you get through giving his order you are exhausted but also realize you have not figured out what you want.  (I have noticed this too.)  So it is easy to just order something simple or order the same thing he is getting which is not what you would have ordered if you had a chance to consider the menu.  This time Miss ordered ribs and French fries for herself.  When it was served she had four ribs and fries. 

Well he thought hers looked good and wanted a taste or her ribs. She said she cut off a bite or two for him.  Later he asked for a taste of ribs; he didn’t remember he had already had a taste.  She put a few more bites on his plate.  Then he mentioned her ribs looked really good – could she spare a rib?  So she cutoff a whole rib and put it on his plate.  She said she looked down at her plate and she hardly had any meat left; so she ate French fries. 

When they got in the car he said he was really overly full and asked if she wasn’t too?   She said no that she was still kind of hungry.  He really could not understand that.  They serve a lot of food there and she must really eat a lot if that was not enough food for her.  She just laughed and when she told me I laughed.