NEW YEARS EVE 2006

On New Years Eve people go out to celebrate. Sometimes they watch the ball drop on tv, sometimes they are the ones out in the cold watching it drop in person. But, here Elbert and I sit, alone. I've been depressed for weeks now and the thought of another year of the same ole thing or even worse things just does not improve my emotions.

As night draws near Elbert gets restless. He's back on the 'The owners of this house are coming' kick. He wants to know if we have the car here, so I said yes it's in the garage. He gets up out of his chair and announces that he is going to back the car out of the garage so that when the owners of the house get here they can park in there. Man, he just can't get that out of his head and after awhile, it begins to drive me nuts. I tell him it's okay for my car to be in the garage, that we are staying here. He got really quiet and then he said, 'I'm going to get me a piece of paper and write down all these stories you are telling me'. I just burst out laughing. It was so ridiculous so I told him 'I'm going to write down all these things you are telling me'. What he doesn't know is that I have been recording his decline into Alzheimers for years now. He doesn't even know he's not normal anymore. He think I am the one with the problem. How strange all of this feels.

The New Year will be 2007. What will lie in store for us? It's scary to even think about it so I try not to, just take one day at a time. But, reality is reality. My days are marked with more caregiving, more confusion, more work, more worry. 2007 doesn't sound like it is going to be a good year.

Giving Thanks in a Lot of Ways

My life is an instant - An hour which passes by;
My life is a moment Which I have no power to stay.
You know, O my God, I have only today.

-----Therese of Lisieux 1873-1897

Thanksgiving 2006 was filled with children and grandchildren arriving and lots of good food and fun. We cooked about all day (one crew at daughter Shirleys house and one crew at my house). It was a busy day so by the time we ate and visited awhile I could tell Elbert was very tired and withdrawing into his own little world. So, we prepared for bed.

I must have been pretty tired myself. At two a.m. the door alarm woke me up. I was so exhausted I had forgotten to deadbolt the front door. By the time I slipped my shoes on and got to the door Elbert was out of the house and a half block away going down the sidewalk just like he did that every night at 2 a.m. He was walking fast for he was on a mission. I called him as I hurried out the door but he didn't hear me so I yelled louder. I just hoped that I did not wake the neighbors up. I caught up with him and got him turned around and started back to the house. 'Where in the world were you going?', I asked. 'I was going to find you' he said. He is becoming increasingly attached to me, coming to find me if I am out of his sight for more than a couple of minutes. That presents a real problem for I can not sit in his sight all the time. There is work to do. It's disturbing to me that I will walk out of the room only to turn around and almost fall over him for he is right behind me. But, it's something I will have to deal with.

We had a great Thanksgiving, with our children and grandchildren surrounding us. We had a lot to be thankful for and as I crawled back into my bed after tucking Elbert into his, I was most thankful for door alarms and a son in law willing to install them for us.

Delusions, Disturbing Days and Nights

The first week of Oct (2006) started a downhill slide. I was filled with dread and fear as I felt we had gotten to a new chapter and I sure didn't like how the end of the book was going to turn out. On Friday night the 6th it started to rain and it rained and it rained. I'd had a new roof put on the house and was horrified to find water dripping from the ceiling of the sunroom, even out of the light fixture. Then it started pouring down the walls. It kept me busy mopping up floors and emptying water pails. I would wake up ever little while to see about the mess once again. Elbert sleeps through anything anymore so all the commotion didn't seem to wake him. Then I heard him........

It was 3:30 a.m. He was standing at the sink in the bathroom, fully dressed, brushing his teeth. He said he was going to look for me. I managed to get him back to bed but I still was awake most of the night, mopping and emptying and listening.

Saturday the rain still was coming down. By nightfall Elbert was delusional. About every 10 minutes he would insist that we had to get out of the house and go home. I tried every tactic I could think of... diversion, not answering, telling him the truth and lying to him. Nothing worked. I gave him a Risperdal at 4 and another at 8. They had no effect on him.

Finally he decided that what I had said about this being our house was maybe true. So, new questions started. 'What town are we in?', 'Did we sell everything to come here?', 'Had the previous owners gotten all their things out of the house?' and 'I need to change the address on my allotment' thinking that we had just moved. By nine p.m. he was full blown into getting out 'of this couples' house'. I put us to bed. I was so exhausted from the lack of sleep the night before and problems all day long. I just hoped that he would conk out.

But, things never work out the way you wish they would. Every few minutes Elbert kept coming into my bedroom and saying 'I'm in somebody else's bed and they are gonna come in and want their bed'. So after that happened several times I just crawled into bed with him. Maybe that would calm him down. No such luck. He was convinced that he had slept on the floor and he had seen a 'pretty girl' get out of the bed and she was going to come in and want to go back to bed. Another sleepless night. At least the rain had stopped and I called the roofer to complain about the leaks.

The following day he was convinced that he was in the Navy still. 'Did I come home on leave?' he asked. He didn't pursue that too long, thank the good Lord for blessings. But, that night here Elbert was again, his clothes on, wanting to leave. He again was convinced that a girl was going to come in and want her bed. I told him that no, she was on a trip and I'd talked to her on the phone and she said he could sleep in that bed. You gotta think fast and on your feet with Alzheimers patients. So, I dialed our daughters number so she could tell him it was alright for him to have that girls bed. That didn't work too well. He told her we were back in Alabama. I tried the truth, 'Honey, we are not in Alabama, we are in Virginia'. and he looked at me like I was nuts. He said, 'Man, are you lost'. I just burst out laughing. You either cry or laugh and I chose to laugh.

SUNDOWNING Sept 2006

It's Sept 2006
Elbert has started what they call 'sundowning'.  He does well during the day but at night he has no clue where he is and often asks if we brought our toothbrushes when we came to 'this place' or he'll ask me where he is supposed to sleep. A talk with the children brings varied suggestions. I do mental exercises with him and one day I asked him to name all the birds he could think of. He named eight so I asked him if he could name a bird that did not fly. The old Elbert crept through for just a moment... he said, 'yes, a jailbird'. We got a big laugh out of that. He is still in there somewhere, in all that tangled mess in his brain. I am thankful we still see it ever once in awhile.

A New Problem - August 2006

It's August (2006) and I know the summer has been a long one and I know that things change with Alzheimers. Nothing stays the same but this is a new thing around here. I am talking on the phone when I look up and there is Elbert in his jammies, shoes in his hand and a shirt draped across his arm. I asked him what he was doing and his reply was 'I thought I'd go on home'. Here is a man who has been in bed for over half an hour, in a bed that he has slept in for over seven years, and he's gotten up so he can go home? That's a new one and I sense that we are in trouble.

The problem continues and it still does today (2009). He does not remember that we have ever lived here. One night he told me he'd just go home and eat supper, so when he changed his clothes after his shower he came to the living room door and waved goodbye to me.

The only room in the house that he seems comfortable in is the sunroom. He still has some interest in watching cars go by and people walking up and down the sidewalk. So, that holds his attention for a span of time.It looks like to me that he would remember being in this house, buying it, moving here but those memories are all gone. And, so much more is gone. I feel now that I am Elberts thinking process about 90% of the time. He just doesn't seem to know how to do hardly anything. I am helping him change his clothes, remind him to shower and even sometime hop in there with him to be sure he does a good job. He would never eat if I didn't fix something. He doesn't know where to go, what to do. I am thinking and doing for two now. The Elbert I know has disappearing from me. The road that we are on will be long and lonely and I have known that for years now, but it's just becoming so much a part of our every day way of life.

We still enjoy an occasional outing and being with family. It's hard on the grandchildren seeing their beloved Papa no longer here but they try and I am grateful for that. It's hard on us all. That man was the light of our lives and we realize that the light has gone out.

Back to July 2006

Even after the trials of traveling earlier in the spring we were on another trip in July 2006. I guess I just did not want to give up on doing what we loved to do. Son Michael and his wife asked us to spend a month at their home in Nebraska. 'It's so much cooler out here in the summer, Mom', was the plea. Sounded good to me. I mean Coastal Virginia can get muggy and hot in July so Elbert and I flew out. It wasn't but a few days until a heat wave hit Nebraska and we were in just as much trouble weather-wise as we would have been if we had stayed home. But, we visited, I sewed a new quilt top, we ate out, had a nice relaxing time of it.
On the 18th of July there was to be a free concert performed in the town park by the Nebraska 43rd Army National Guard Band. It sounded like a nice outing for us but I was worried about the heat.  The concert was to be later in the cooler part of the day so we should be fine. We listened to the music and ate barbeque at the picnic table. Although it was hot I didn't think a lot about it.

After the music stopped we were all standing around chatting with friends when suddenly Elbert passed out and hit the ground. There was plenty of help readily available, with ice packs being applied, pulse taken and so forth. Soon an ambulance came. After he got to the ER (and was conscious again) he was like the old Elbert, joking around with the nurse and telling her that he could outrun son Michael in a footrace. It had been quite a scare and made us realize that he was not drinking enough water during the day and certainly had not been during our outing in the hot sun.

Our trip was getting lengthy. Elbert was sleeping a lot during the day and then keeping me awake at night. He kept calling son Michael by Elbert's brothers name (Robert) and asking him about things that had happened in their past when they were young boys. This sort of thing disturbs me, I am not sure why but it does. I think I am more concerned for the person Elbert is talking to than the fact of it happening. I am embarrased for him. He'd be so upset if he knew that he was making mistakes like that.

I don't know if all this confusion is because we are in a different house, a different state, with things different happening each day. Or is this just progression in the disease? I can't figure it out. I just know that one month away from home was trying for us and for me, especially. I needed my own bed, my own kitchen, Elbert needed some sort of connection to where he was. It looks like trips are a thing of the past for the two of us.

TRAVELING ALL WE CAN - 2006

Our grandson was having his Confirmation and I so want to go. I think perhaps since the flight is short I can go and take Elbert, too. I begin to pack our bags the evening before we are to leave and discover that Elbert has absolutely nothing to wear. The medication he is on has bloated his body and he now weighs 200 lbs. He always prided himself of not gaining weight and was always around 175-180. Boy, would he be upset at the scales now.

Well, I am upset, too. What are we going to do? Daughter Shirley comes to the rescue. She drives her Dad to the nearest town and they pick out some clothes that will fit. We had an early flight. I did not know how Elbert would take to the flying. Would it be unsettling for him? Evidently not... as the plane lifted off the ground he started singing 'We're off to see the Wizard'. How funny and wonderful that he remembers the words and the tune.

The visit with Susan's family was a bit confusing for Elbert. He joined in the activities (the Confirmation on Sunday and then attending a school play that Griffin had the lead role in on Monday.)
but Elbert never could figure out where he was. He thought we were in a hotel and wondered if I had enough money to 'bail out out of the place' when we leave.

We also drive down to Nag Head for a couple days at the beach and then on to Alabama where we moved from. I know in my heart that this is the last ditch effort to go anywhere. Things are getting very confused for Elbert and I can't take care of him and take care of the driving, too. Daughter Marie goes to help out.

He enjoyed his brief stay at the beach but when we got to Alabama I was distressed to find he did not remember one thing about our old home, the people we had known, the church we used to attend. How much longer can we maintain any similance of normalcy? It's pretty much gone.

Sometimes I feel like I am standing outside myself, watching these two people living this lifestyle, observing, learning and yet yearning for that quieter, easier way of life.

MEMORY WALK

I've been attending the Alzheimers support group and it's been very helpful. At one of the meeting Susan, the director, asked me if I would like to take part in the Memory Walk. I've never been in a Walk before. Besides she wanted Elbert to be the Honorary Chairperson. That was an honor and I sure couldn't just sit back and do nothing. Besides, I really feel like I need to connect with other caregivers, to lean on them and have them lean on me, to do my part to help out. But, I have no idea what is expected of me. I've never raised funds before. And, I am no good at asking people for favors (or money). Don't know how that is going to work out but I will try.

At this time there's a part of me that feels overwhelmed. The partner who was to help me through these 'golden' years has checked out on me. I feel a sense of resentment. How dare he do this to us? There is so much I want to do and can not and then there is what I HAVE to do. My priorities get scrambled and I lose my way. And, then I find myself again and shout hooray!! only to lose myself again in a couple of days or so.

Perhaps if I focus on this Memory Walk I will be doing something to help Elbert and I will earn for myself a sense of being, of some worth. Just maybe. But, first I gotta figure out how to go up to people and ask them for donations. Come on Confidence.... Quit hiding.... I need to succeed. I need to find me again.

I Relate to 'The Widow Down By The Brook'

Marie and Cane (that's our great grandson, age 4) came to see us. Elbert enjoys Cane as Elbert has pretty much reverted back to childhood himself so the two of them get along fine. It is warm enough for the two of them to go outside and fill the bird feeders, with my help of course. Elbert's hands are shaky and he can't seem to find the opening to pour the seed into.
Marie brought me a book to read. It's by Mary MacNeil titled 'The Widow Down By The Brook'. It is a true story and I have always loved true stories but this one really plucks at my heartstrings. Mary's husband falls in love with an old barn out in the country in Connecticut. He buys it and they move in and start renovating it. It provides a place of peace for them both but it is a ton of hard work. Then he gets sick and dies and the gist of the story is that he has left his 44 year old widow to discover how to make a life and a home alone.

As I read, I saw glimpses of Elbert years ago when he traipsed to our country home in Alabama with his family in tow and our having to adjust to that new way of life. And, now, here I am, years and years older, with Elbert no longer involved in the day to day responsibilites and I am learning to make a new life and a home 'sort of alone'. In a way it is preparation for the eventuality of a day I probably will be all alone.

I think of this house and how it will be with me in it all by myself. It's a big house, probably too big. I may have to find a smaller place. I wouldn't like that. This house was that dream home I had longed for and it has been my home as no other ever has. I love the formality of the decor, the roominess, the sounds from the street, the sunroom which gives me a feeling of being both indoors and out. And, the sweet little yard that Elbert and I both enjoy so much.

Things are changing. I must get ready for what lies ahead. I must prepare.