PLAQUES AND TANGLES

3 AM Can't go back to sleep. He got up in middle of night again – getting dressed. Said he was going to load some stuff into the truck. so we would be able to get an early start. We no longer have a truck. Where were we going? Finally got him to say what he was going to do. “going to check on the tanks to be sure they have enough fluid in them”.

Plaques and Tangles – will probably paint another abstract telling about Alzheimer's.

I'm having surgery on this lump on my jaw on the 30^th.

CHANGES 11/7/14

  

Some changes this past week. Rather than sleeping most of the day, he has been awake and paced the floor. Don't know if this will continue or not.

One night this week he insisted on talking to his mother on the phone. Finally settled on talking to Drew. By the time he got on the phone he could not form sentences. Talked and talked without making any sense. Drew called me right back and asked if I wanted him to come down here. I declined; after all I don't know what he could have done. I'll save him for something worse.

The next day he explained to me exactly how a grandfather clock works. How is that possible?

THINGS GETTING BETTER

Very soon after the last writing, the children took me to lunch to discuss our Darling. I told them I still could not bring myself to put him in a nursing home. (I think they already knew this and were secretly glad their father did not have to leave home.) They suggested I get someone to stay a couple more days a week. I did and it worked wonders. I am spending more money – not just for the sitting but I have bought some new clothes. Heaven knows I need them. Haven't bought much lately, haven't been going out much so did not need clothes.

Glory Hallelujah.

ARE WE COMING TO THE END?

I wrote this in August - just now posting it.

I can't stand it. Is this the end? Things are more or less the same; when he is sitting in his chair and I am in the room with him, he is okay. I twitch my shoulder, start to get up. “Where are you going? What are you going to do? Can I help you?”

I am the one who has changed. I want to sit in the yard and drink coffee without any explanation. I want to get in the car and go somewhere without making telephone calls and arrangements for someone to come be here. People invite me to go somewhere and I decide if it is worth the 10.00 an hour and can I find the right person to stay with him. They go places without kme and I am jealous even though I have no reason to be. I can't expect the rest of the world to change just because mine has.

I have fantasies. If only he would black my eye, make me bleed, break a bone – I would have a reason to put him in a home. If he were on drugs rather than dementia, I could have him put in jail and I would be on my own. Just the thought of it makes me breathe a sigh of relief.

His needs are so small – to sit in his chair in his living room and have me with him – how could I deprive him of that?

Also, what about the money? Have no idea what other expenses will come up. How long will me money hold out?

CAREGIVER'S RASH

Well it finally happened. There has been so much stress that I came down with a rash. Did not know what it was from. The little dots were in various clusters in various places over my body and ITCHED AND ITCHED AND ITCHED. I put 2 or 3 kinds of over the counter non-itch stuff on it. Not much help.

AIR CONDITIONER PROBLEMS: in 2 weeks time we were in a motel for 6 days. When I finally decided to leave home, it was 95 degrees in the house and 101 degrees outside, our hottest day so far at that time. Good judgment is not one of my long suits. James was completely discombobulated in the motel. What is this place? Why are we here? What town are we in? I want to go home. I am going home; do you want to go with me? Over and over and over.

My rash got worse and worst and the itching got itchier and itchier. We finally got home – still with rash and still with itch.

AMAZING WHAT YOU WILL DO FOR GRANDCHILDREN: I sometimes get to see Megan on Tuesdays and I had missed two Tuesdays. I had to see her but refused to give her this rash. So on Saturday I went to emergency room. (A long story as to why I am between doctors.) The rash was almost gone but the itching still in full force. Saw one of the doctors and I think he thought I was crazy. A nurse came in and started asking me questions and typing on a computer. I finally told her that I thought it was a caregiver's rash. She stopped typing and looked straight ahead. Are you a caregiver? Yes. Who do you give care to? This handsome man tn the chair. He has subcortial dementia. Had it very long? For years. She left the computer and came over and took both my hands. You are under way too much stress. You have to do something. Just give it to God. I did not answer because all the things I could think of to say sounded flippant. I feel like I do give it to God and I am sure he is with us emotionally; that is why we have been able to do this so long, but I don't see God helping me get him into the shower, shaving him, being sure his bottom is clean.

She left the room. She came back in with a bald headed man I knew. ROBERT, and I threw my arms around him. I knew him because he had helped me get home health care for James. He said I'm your nurse. I was so glad. He knew all about James. He knew I was not crazy – not very crazy at least. The both left and strayed a long time.

I know they decided I had Caregiver's Rash. They came back in and she started typing again and Robert told me this was not contagious. They were going to give me a pill and a shot while I was there and send me home with three prescriptions. Thank God for sending Robert who knew all about James and his situation.

God is still looking after us.

CURIOUSER AND CURIOUSER

CURIOUSER AND CURIOUSER

Last night Darling kept asking and asking me questions about family and family relations. One of the questions was did I live in the house with him and his wife? I just told him yes, I did. Well, that is true.

Today we were in the car and a truck passed me. I mentioned how fast he was going. James said he also had duel pipes. He said “Did you hear that sweet sound”?

So should I be upset that he remembered duel pipes and did not remember me? No. I should not. After all, duel pipes were his first true love; they came along before I did.

GOING DOWN HILL

Jas. Asleep on sofa; he awoke and said for me to answer the phone. I told him he had been asleep and must have dreamed it because the phone had not rung. He very quickly took off his watch and handed it to me and said for me to answer it. I took the watch and looked at it and wondered what to do. I finally put it to my ear and he said “That's not the phone.” He closed his eyes and went back to sleep.

So strange.

A DIFFERENT LIFE

My friend Judy;s husband died. So sad but also a blessing; he is no longer in pain – mentally and physically. Take care of yourself, Judy.

I cooked a brisket this week. Took half of it to our potluck at the painting society. Took the other half to the church for the youth group's meeting. I am trying so very, very hard to keep myself busy and and involved in some things just for me. It is amazing how hard it is to just make arrangements to have someone (someone I approve of) stay with James, get my stuff (art supplies, food, etc.) loaded in the car and back out of the driveway.

A few days ago I sat and listened to a lady complain about all the things in her life that she hates. That she hates getting up so early for church; she would love to sit and drink coffee on Sunday mornings. She hates daylight savings time; well don't we all hate it? Lots of other things of the same ilk. I just listened and thought to myself “Honey, you ain't seen nothing”.

Yesterday I planted 8 tomato plants, some sweet basil and some lettuce. The next few days are “barren days” according to Farmer's Almanac, don't plant anything. Thank goodness; that about “corked” me as my neighbor used to say.

Loving Hands built a ramp from front porch to ground so James can get down easier. It is really great; I love it. It is also another reminder of what my life has become.

Am reading South of Broad by Pat Conroy He such a great writer.

And now to James – he is slowly going down and down. But I don't seem to want to write about it.

DECEPTION

I've never lied so much in my life – lie, deceive, sneak around, hide things.

I just hung up shirts in the guest room closet and there were a box of cereal, Honey Bunches of Oats, and half a package of Oreo cookies.

I bought cookies the other day – biscotti. Eight to a box. I made us some coffee, brought us each a cup of coffee and a biscotti. The next time I looked, there were only two biscotti left; he had eaten the other four in a matter of 30 minutes. I snatched the last two up and hid them in the back of the cup towel drawer. When I told this to Missy, she laughed and said that the week she was with him, she found herself stashing food everywhere – thus, food in the guest room.

He has driven me crazy ever since we went back off daylight saving time. He can't figure out how to reset his digital watch. He has worn this same kind of watch for years and years but now he can't reset it. Several times a day he would tell me the other clocks in the house were an hour off. I would explain daylight savings time and that the clocks were right and his watch was wrong. A few minutes later, we would go through the whole loop again. We were doing this several times a day and I was going gaga. So naturally, I snitched his watch and put it under some stuff in the junk drawer, and said I did not know where it was.

Yesterday I gave Missy some money and asked her to get him a watch and say it came from her (thought he would accept it as a gift from her; if I gave it to him, he might think it was the wrong kind and give me grief about it). About six or 8 times last night, he would ask where the watch came from. Why did she buy it for him? We should reimburse her for the watch. I said I would. On and on. Whats is that quote about “when first we practice to deceive”.

I'm getting hungry now – better go to the guest room for some cereal.

IS THIS THE HARD PART?

My darling has been pretty easy - as compaired to some others.  I have been telling myself that one day God is going to say "Okay Maridelle, here comes the hard part".  Is this that time?

Things have gotten a little worse. He keeps asking me where Maridelle is, where his wife is? When is Mary is coming back. Is she coming back for good? What is in that poor man's brain. Where are the people are who are staying with us. He wants to know if Drew is coming home tonight. He is so good socially that people probably don't believe he really does the things he does.

It is very curious to me that I love this man. After all, this is not the man I married. Have I said this before?

The last two nights I have given him Seroquil to calm him down before bedtime. It really does the trick. I mentioned to doctor Tuesday that several of the things James takes are to make life easier for me. He agreed and said that was completely approved; I need to be able to get through this, as well as James. Thank heavens for that good doctor.

Talked to my friend Judy yesterday. Her husband is worse than mine. At least James is cooperative (usually).

Stop the rambling, Maridelle.

LIVE BETTER THROUGH CHEMESTRY

Things have been hectic around here for a week or two. Either James does not phrase his sentences so they are real understandable any more or my brain is not receiving as well as it used to. Then add to that the fact that I forgot our evening meds two days in a row. Last Monday almost brought tears and blows – to both of us.

Was it DuPont who used to say “Live better through chemestry”?

Bill P. thanks for the note; I really appreciate it.

MORE CEREAL STORIES

There are only three things James can think of to eat - beer, ice cream and cereal. He eats a huge amount of cereal; so we are always running out of cereal or milk. So now he eats those little Wheat Thin crackers in a bowl with milk and sugar. Our daughter thinks it is a good thing – now I can buy the cheapest cereal at the grocery store and he won't know the difference.

Recently we had bbq ribs, home cooked black eye peas, sweet potatoes home made bread and pie for dessert. (We usually have cheese and crackers or some such.) He ate a good dinner and 30 minutes later he was eating a bowl of cereal, then a bottle of Boost, then a coke, and several other things, don't remember what. I asked him if he was hungry. He said he did not know.

A very strange sickness.

THE WATERMELON SEED

We ate lunch at the local cafe the other day. I had watermelon. One of the seeds popped out on my neck.

James says “Oh you have a bug on you” and tries to brush it off.

“Oh no” he says “It has gone down the front of your dress”. And he pulls out the neck of my top and plunges his hand down my dress. I am pushing his hand away and saying “Don't do that, stop, quit.”

He is getting aggravated now “I am just trying to get it before it bites you – or stings you - or whatever he does”.

I am still pushing his hand away and now I am yelling, “It is not going to bite me; it is a watermelon seed”.

We should charge the cafe for entertainment.

LAST CHEATER'S WALTZ

So sad. Somehow today I got lost in Youtube in the old country western music. Those sad country songs James and I used to dance to. “It's 4 in the morning and once more the dawning woke up the wanting in me.” He used to love to waltz. Another one we loved to dance to “The last cheaters waltz . Tonight she'll be with him, no matter the cost, as they dance to the last cheaters waltz.

We danced many miles across those old wooden floors. But that is all over.

I try to remind myself that those times were wonderful, and I thank the Lord for them.

All the many hours spent water skiing on Lake Austin with the kids and after they were older all the time we spent sweaty and dirty at the motorcycle races. And now he is usually easy to get along with; I remind myself those are real and true blessings and I appreciate them.

YEA, YEA, YEA

Great families are really great. Twice a year we have a mothers, daughters, daughters-in-law, cousins get together. We take an all girl road trip. Twice a year. The date of the next one is always planned in the car when we are all together; that way we know the date in plenty of time. The next one is in October; believe me it is on my calendar!!! This time we went to Palestine – not so far away that we spend all our time in the car. This time there were six of us who went. We all have Mama Mc in common; she is a grandmother, greatgrandmother greatgrandmother-in-law, you get the idea. So we have memories and family stories in common.

This year we went to an old country church we used to take our grandmother to. Told old stories about dinner on the grounds, coffee boiled in a huge black iron pot on the grounds. Walks through the grave yard. Told stories about Cynthia Ann Parker and the fact that this church was the first protestant church in Texas. Since Texas was part of Mexico at that time they had to get permission from Mexico to start the church. We older ones had grown up with this story. (A true story.) Went to a wine tasting at Sweet Dreams, and brought home lots of wine. Drove through old town and took photos of a creek running through it. I am sure I will paint picturies of this creek.

A few small mishaps. We backed into a headstone. Did not make a blemish on the headstone but dented the car. We kept closing Wynell up in the back seat of the car – accidentally. She sat in the back to prove she is still agile enough to get back there; then when we would get out we would forget to turn the middle seat down for her to get out. Yes, it really was an accident – most of the time. Some of the young ones always ask why Janet Sue is the only one with a double name. The answer is that they knew she would be a brat and they would need a double name for when they yelled at her. We get connecting rooms so that we can stay up late drinking wine and telling old stories.

Being with people who love you and with whom you have things in common restorith my soul and my cup runnith over.

Judy, we missed you so much.

SOMETIMES IT IS FUNNY

You may have noticed I can't seem to blog anymore. So this time I am not talking about James – will just talk about dementia in general.

Met a woman the other day whose friend's mother has Alzheimers. The mother has always been a quilter and quilting was now her obsession. She pieced quilts all day long every day. Never quilted them just pieced them. She had lost her ability for design and sometimes put the pieces in wrong side out. Her daughter was going crazy and broke with buying more fabric all the time and the pieced quilt tops were everywhere. Someone told the daughter about thread that disolves in water. So she bought some of this thread for her mother. Now daughter put the newly pieced quilt tops in the washer ever night and the next day presents her mother with new, already cut up quilt pieces and everyone is satisfied. Mother doesn't recognize the fabric or realize she has already done a quilt top out of this and the daughter is relieved to not have to go to buy fabric every evening on the way home from work.

Yes, this is funny – go ahead and laugh. If you live with dementia you realize that laughter if the only thing that keeps us sane - or semi-sane.

And yes, the daughter has saved some of the tops to have as keepsakes.

SO SAD

I am a widow, at least that is what it feels like. I am so sad and so lonely.

I have just been lurking on Facebook and I am envious. I saw all the comments and pictures of what wives and girlfriends got for Valentine's. I got the same thing for Valentine's that I got for my birthday – nothing. Did you notice? All the above sentences start with the word “I”.

Then there was a picture of the ladies in jazzerise at my church. I would be in that picture if I could get away a couple more times a week. I would also be in book club.

Yes, I realize James and I are really lucky, Alzheimerwise. He can still go places with me. He is easy to get along with – most of the time. He was mad at me 4 times this week; for no reason. I asked him one time why he was mad at me – he said he did not know. Some how it did not devastate me the way it would have a few years ago; I am becoming blunt. I think his anger is due to some medicine they are changing out.

I get out one and a half days a week. I play dominoes for half a day on most Mondays. On most Thursdays I spend the day painting with some old friends. It costs from 50.00 to 90.00 each time, but it has been worth every penny of it. The ladies who stay with him are really wonderful people.

We are really lucky. I wonder about my friend Judy and her husband. She still has to work and leave her Jim by himself. How much longer can she do that? Yes, I am very lucky and should not be moaning and groaning about my situation.

And our children are so good to us. I could not get through this life without them. How long can they hold out?

So that is all. Don't know if I will post this or not.

LONG TIME FRIENDS

Last week was so good. Long time friends from Houston came to visit, also their son and his girl friend and long time friends from across the lake. The eight of us used to run around together quiet a bit. Some of us square danced together, traveled together, camped together and there is no telling how many hundreds of pounds of food we all ate together. Dear God, thank you for good friends.

Tomorrow one of our granddaughters is coming to spend the day with James while I go running around. This was part of her Christmas gift to me. She gave me a card saying what date she would be there to stay with him. When that day came the roads were icy and I told her not to come. So this is still Christmas I am celebrating. Yea, yea, yea!!!

Families and friends are so wonderful. Please excuse all the complaining I have done.

MORE DOWNHILL

More downhill – both for James and for me. As usual, he asks the same question over and over. He sleeps about 18 hours a day. Gets up and drinks a pot of coffee while he reads the paper, (he will sometimes read bits to me and read the same thing again three or four times), eats a bowl of cereal, lays down on sofa and sleeps until 11:00 I wake him up for lunch. He eats and goes back to the sofa and sleeps until 4 or 5 o'clock. He starts wanting to go to bed about 7:30 or 8:00.

He asked me recently what my name was. I told him. He asked how it was spelled. I told him. He said that was how he thought that is how it would be spelled. I had the feeling he knew I was his wife – just couldn't remember my name.

He can still tell time but at least once a day he asks if it is morning or evening.

It is really hard to get him to shave and bathe. Often I just take the path of least resistance and let him go as he is.

AND ME. I have been having physical problems from the neck up. Mold and strange stuff in my sinuses and nasal passages. Serious dental problems and tear ducts stopped up. They told me in a caregivers meeting that several studies had been done that found that 90% of illnesses are caused by stress. I googled it. It seems that stress breaks down immune systems that let you get sick. I must be the only person left in the world who had not heard that.

The good news is really good news. He is still easy to get along with – at least most of the time. When we go somewhere, I can count on him being polite. According to things I hear and read, that is a real blessing.

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.