Welcome to the New Year - 2009

We saw the New Year in with a bang.... sort of.... Michael and I were both sick, feeling so miserable and Elbert would not settle down. He was going out the door regardless of what we did to detain him. Night was marching right along toward the bewitching hour of midnight and year # 2009. Michael finally gave up and put his Dad in the car and drove off. That had worked for me. I'd put the wanderer in the car, drive a few blocks, come back home and he'd be fine. However.......

Michael and his Dad were gone, and gone, and gone. I got uneasy. Michael's just moved here, unfamiliar with roads and here it is, New Years Eve and he's out wandering around. The phone rang, they were on their way home. Michael was just driving until he thought his Dad would settle down but Dad did not..... and even after they got home Elbert still did not want to go to bed and it was well after midnight.

When we managed to crawl out of bed the next day (Jan 1st) I cooked the traditional black-eyed peas but I had no greens of any kind and I sure wasn't going out to buy any. Eating some type of greens on New Years Day is supposed to give you good financial luck in the New Year. Heck, with the way the economy is going I don't expect eating a bunch of greens would help one bit.

Ever since Christmas Elbert has had some serious sundowning. That seems to be the worse part of his Alzheimers right now. You just can't reason with him, make him understand that people slow down when the sun sets. He just get more agitated, more restless. It's tough.

On January 6th we had the sitter with Elbert and the children took me out to celebrate my 75th birthday. Of course, it was a dark and drizzly day, what else is new. ha That is life at this point. But, I was determined to have a good time and we did.

I wanted to go to Capt. George's Seafood Restaurant in Williamsburg and we ate and ate and ate until we could eat no more. They have the most amazing buffet. It was an incredible birthday and so much fun. For awhile I forgot my trials at home and was surrounded by love and attention. I may be 75 but I feel that I have so much living ahead of me. I am ready to start!! So, here's to me and lots of living.

Wrong Movie and a Runaway

Nov. 22 2008
Tonight was scary. Elbert was paranoid for the first time. He started talking about a bunch of men coming to find him so he hunted all over the house for a place to hide. When he was unsuccessful at finding a place to hide, he wanted to find his gun, 'Just in case I need it' he reassured me. Of course, I had NO IDEA where his gun was.

He would not shut up. Luckily we had earlier had the foresight to store his pistols in our son in laws safe. The rifles and shotgun was in the back of a closet upstairs. I knew he couldn't find them but just the thought of him having those sorts of things on his mind really concerned me.

I took him in the bathroom and got him washed up for bed. I could not get him into the shower because as he put it, 'I don't want to be naked when those men get here'. Heaven forbid that these imaginary mercenaries would see him without clothes.

He started talking about his Dad who had been dead for 24 years. Where was Daddy, where was his bed, why hasn't he come by yet and so on. My nerves were getting frayed so to get him to lie down I put him in my bed and turned the tv on. The Texas Tech-Oklahoma football game was on. He sat propped up on the pillows, his eyes closed for a couple hours then I put him in his bed and prayed he'd stay there.

I'd been gone the week before. Made a trip to NY to see that newest grandson and had left my daughter and son in law in charge. I had spent the week cuddling that sweet bundle from heaven and now I was back in realityville. When I had returned home another daughter told me something very disturbing. It seems that her hubby was in his workshop one night when he got this strange feeling. He didn't know what it was, he just felt ill so he stepped outside the workshop to get a bit of fresh air. It was dark, drizzling rain and son in law noticed someone walking up the sidewalk. This person was dressed in a light colored outfit so the street light shone on them making them look almost ghostlike. Then, he recognized the figure. It was Elbert

John (son in law) ran as fast as he could but slowed down just as he got to Elbert so as to not alarm him. Elbert turned and said, 'well, hello, John'. John asked him where he was going and E. answered, 'Out to check the dogs'. John walked him home. The two caregivers inside had not even missed him.

Suppose Elbert had headed for the busy highway, Suppose John had not had that sick feeling and saw Elbert. I was just ill with the thought of what could have happened. It seems daughter #1 went upstairs to change the sheets on a bed. Elbert was in his bed downstairs and supposedly asleep. She told her husband to listen out for her Dad while she was gone. Only husband was much absorbed in the computer and Elbert got up, walked out of the house and would have been lost had it not been for John.

A week later (and we should have known better) Michael put a dvd in to watch and Elbert and I got into it as well. It was 'No Way To Go', a spy-murder thriller. Like I said, I should have known better considering what had transpired just the week before. The main character was a Naval officer and Elbert identified with him. Kevin Costner played the part and I was enjoying just looking at that good looking hunk of man. But, Elbert confused reality with fiction and started shaking all over saying people with guns were coming to shoot him. I just wanted him to calm down and not be afraid. We can not watch movies or tv shows with any violence, confusion or stress in them because he just doesn't seem to differentiate real with unreal anymore.

CHANGE IS UPSETTING

Oct 18th, 2008
Elbert did not bat an eyelash until 4 a.m. Needless to say I did not sleep either. I wonder if he feels the anticipation or anxiety in the household - or was it just 'one of those nights'. One will never know.

You see, our son is moving from Nebraska to Virginia. Daughter Shirley and her hubby went out to help him with the move. Shirley had called to say that the caravan had made it to the Virginia state line and they would arrive here around 2. Shirley was driving Michael's car packed with stuff, John was driving a U-Haul and Michael was driving his Mountaineer and pulling a travel trailer with it. They must have been a sight to see going down the highway.

Then the call came.... they wouldn't be here by two, the U-Haul had caught fire. They didn't lose anything of Michaels but that old U-Haul just couldn't make those steep mountains. Some trucker, bless his heart, stopped and had the fire out by the time the firetrucks got there. They had to leave the U-Haul behind for repairs.

So, the household was in an uproar, me and Marie hurrying to cook then having to put it on hold. Phone calls and then finally the gang got here. Naturally Elbert would be upset.

The next night we had another bad, bad night. Elbert got up at midnight but went right back to bed..... however..... at 15 til 2 he jumped out of bed like he was a youngster and started searching for his shoes. I started trying to coax him back to bed but he said rather firmly, 'No I've got to get my things and go home'. Every time I'd tell him to go to bed he'd say 'You go to bed' and he'd take my arms and try to push me. He's pulled away from me before but never used force to push or shove me. This was new.

No explanation worked. At one point he said, 'I've got to go' and I told him I wanted to go with him and he said he couldn't do that for me, for me to stay here and go to bed. I said, 'but I want to go with you in the morning. We're married and we need to be together' and the shocker came. He replied, 'I am married to a little girl named Willie. I don't know if you are married or not. Go to bed'.

                                                             the girl that he married


Finally he sat down on the edge of the bed mentally exhausted. In a few minutes he lay down but he did not go to sleep for a very long time. Neither did I. He had not known me, not known I was his wife, he just wanted to leave... I was very sad.

Two nights later he was up again, this time looking for HIS bed. He wandered from room to room with me in hot pursuit. I finally got him to lay down in a bed in another room but that didn't last long. He was up wandering again so I steered him toward his own bed and finally got him to crawl in, much against his will. I started snuggling, saying I was cold, I wanted him to keep me warm. I started rubbing his arms and hands, very gently, as I talked about his Navy days. I was so tired I'd drift off to sleep only to hear a voice asking questions like 'How did you do in bootcamp?' 'Did you like it?' 'Did anybody get hurt?' He thought I had been in the Navy. He has no grasp of reality whatsoever. I don't know when he quit asking me about my Navy days, I just kept drifting off but he, at least, did not get up again. Perhaps he, too, drifted off. Ahhh, blessed sleep.

Solutions

In August (2008) our youngest daughter, Susan, and two of her sons came to visit. There was Griff, the oldest, and we got to see our newest grandson for the second time. Tighe was over 10 months old now and just a delight to Grandpa.
Susan went with us for a neurology appt. She is used to dealing with doctors and had questions. I think doctors get tired of dealing with the same ole faces all the time. But, this face was young and very pretty so he and she had a very good chat. Dr. N. ordered an EEG the following morning.

We got the report back on the EEG and it did not show any seizure activity at all. Susan was not happy with the results. She said 30 minutes is not enough time to get conclusive results. With a son with autism she is more than familiar with EEGs and any other neurological procedure.

Next Dr. N. gave Elbert an EMC. Doc said Elbert had peripheral neuropathy from the knees down (nerve damage). The dr. seemed to think that Elbert would benefit from physical therapy. But, I had my doubts about physical therapy helping Elbert with his falling. I don't think the doctor is 'getting it'. P. T. may make Elbert's legs stronger but nothing is going to keep him from falling when he has one of those 'spells'.

It was during the second week of P.T. that Elbert had a falling spell in front of the therapist. Good.... somebody besides the family now knows what is going on. Up to this point, no one else had witnessed it. We asked the therapist what she thought was happening. 'Looks like a seizure to me', she says. So, Marie and I went next door to see if we could talk to our doctor (our g.p.) and once we described how Elbert acted during these falling spells she agreed that indeed she thought it was a seizure. But, she said that the aminodrone he was taking for atrial fib can cause seizures, neuropathy and tremors. Elbert has all three. I made an appt. with the heart doctor. I was europhic to think that we may have found an answer.

Elbert continued to go to therapy. He would try so hard to do what they asked of him and he would get so tired. However, I still was not convinced that doing P.T. was going to help stop his seizure-like activity or the falling. Sometimes we women just know things. Our intution just takes over.

By Sept 18th we had been having all sorts of tests, doing P.T., and still nothing was happening to help things. The heart doctor put him on mododrine or some such thing I can't remember what... I can't spell it and I couldn't say it either. ha.

October rolled around. I was so depressed. That medicine seemed to be working when he first started it and then he had a complete collapse back to day one, feeling bad, unsteady, seizure activity, falling. We were back to using the wheelchair. We both were exhausted all the time. On October 8th we had another appointment with the neurologist. He could not believe that the cardiologist had put Elbert on Miodrine (sp?) so Elbert was immediately taken off it.

I went into that appointment fully prepared, ideas, questions, suggestions and got what I had been searching for. I even acted out Elberts seizure activity, the hands shaking then drawing up into a fist, his eyes getting huge and staring and his body then getting stiff before he fell. I think I did a darn good job of it. Immediately Dr. N. said, 'That's a seizure' and prescribed anti-seizure medication

Finally, after over a year and a half of constant seizures and me following Elbert around every step ....... somebody listened. Maybe I should have done the 'acting out the seizure' thing in the beginning. But, now, Dr. N. was listening. I'd prayed and prayed for help. I am sure God heard my prayers but the Doctors and I were just not on the same wave length. I wish God had just took Dr. N. up and shook him good and told him 'Help them'. But it doesn't work that way. I had about come to the end of my rope. And, the end was getting very frayed!!

No more falling, no more me following him everywhere. I felt like an animal let out of a cage. And, I know he did, too. Poor thing. It had to scare Elbert to death everytime he'd hit the floor. How he kept from being severely injured, I'll never know.

Earlier we'd gone through about eighteen months of constant potty accidents due to medication he was taking. Changing meds stopped most of that. And, now we'd gone through over eighteen months of constant falling. Three years or more of watching, waiting, hovering, scooping him up off the floor, bandaging scrapes and bruises, holding my nose while I cleaned up messes and scrubbing down the bathroom too often to count. I just am not nurse material. It had been a tough three years.

The Falling is getting worse

On June 30 (2008) I made an entry in my journal stating 'What a Weekend'. It was a very disturbing weekend and it did not stop there. Elbert was so unsteady all weekend so we used the wheelchair. I was so tired from pushing him around in that heavy thing. He has enough mind to know that it is a burden on me and that he is losing his ability to do things for himself. That has to be very distressing for him. I know it is for me.

On Saturday night (the 28th) he wandered around the house until one a.m. Then Sunday night it was three when he finally settled down. As tired as I was I still had to grin. He was like a little boy, 'I need a drink of water'..... 'I need to brush my teeth'.... or 'I was looking for you'. A little boy isn't going to get up in the middle of the night to brush their teeth but it just reminded me of our children when they were small. By 3 I was so exasperated and thinking 'will he never settle down and sleep' but he finally did. I fell into bed exhausted.

On July 2nd he had another bad day, nearly falling several times. I wonder if this is a phase or is he permanently declining this much. He's in the wheelchair most of the time and he knows he's a lot of trouble for himself and for me. I am not sure how much farther he will decline before I can't manage him anymore. It's hard, It's very tiring and very upsetting. By the end of that day I was feeling pretty lost.

July 4th (2008) A holiday. Not so for this household. After Elbert was up so much the night of the 3rd I gave him a tylenol p.m. He slept a long time and I got some relief. I know, the doctor says that tylenol p.m. will counteract the Alz. meds he is on but a gals gotta do what a gals gotta do sometimes.

After supper we went into the living room to watch tv and after a bit he jumped up and headed down the hallway, me in hot pursuit. Now, you gotta remember I am no spring chicken and I don't get around like I used to. And, that man is fast!! He made it midway down the hall and started falling. I tried as hard as I could to hold him up. I thought if I pressed his body against the wall with mine I might could keep him up but I couldn't. His legs just collapsed under him and he hit the floor. Again John (son in law) to the rescue. Elbert had a gash over his eye so Shirley bandaged it and we got him into the wheelchair.

The falling continued for some months. ..... But, there was a solution in sight. I just didn't have it yet.

A CAREGIVER MEETING

Tammie had been working for us for three years and here it was May 24, 2008. Although we had chatted just between the two of us about Elbert's care I didn't feel that we had addressed some of the latest issues. So, I called a Caregiver meeting. Making sure everyone understands the problems and is working on solutions is vital in the caregiving. Daughter Shirley and Tammie join me at the dining room table and we shared our concerns and talked about how to handle those concerns.

We decided that we needed more flexibility in the hours that Tammie worked. I was having a hard time arranging appointments, shopping, meeting friends etc. on the hours she worked.

Shirley and I talked about carpooling more so that I will have 'company' and help when I am loaded down with bags of groceries and other purchases.

I needed more surveilance so that I have more freedom to move about the house.

Those issues addressed, I went about putting them into place. A new schedule was written out for Tammie's work hours. She was more than willing and it gave me piece of mind to know that I can take care of what I need to outside the home.

I bought a baby monitor and put the transmitter in the room where Elbert was and could take the receiver with me as I moved about the house. One morning when it was just too gorgeous to stay inside ... and Elbert was napping in his chair... I took the receiver outside with me and sat in the swing on the patio. I really enjoyed the fresh air, the quietness, the birds singing, the aloneness. And any noise that Elbert made would be transmitted to me.

Some time later Tammie brought over a small video camera and monitor. I could watch Elbert on the screen as I went about my chores. I felt a great sense of freedom and relief from the constant worry that I had been experiencing. Everybody needs burdens lifted from their shoulders and our little chat around the table that day had done just that for me.

The Good, The Bad, the Ugly

March through May 2008... We have been experiencing a lot of falling. Not sure what is going on but it's no fun at all.

On March 2nd Elbert had been talking nonsense all afternoon, trying so hard as he hunted in his brain for words to come and they just would not. That makes it hard for me to know what he is trying to say. Sometimes I can complete the sentence much like a couple who is so intuned to each other, sometimes I have no clue where he is try to go with the jumble of words.

Nightime fell and I started to put Elbert to bed but he could not rise up out of his chair. If he couldn't get up he sure couldn't walk, so, I got the wheelchair and pushed him into the bathroom. He stood up in front of the commode and fell, his legs straddling the commode. Our bathroom is long and narrow and there's no room for a 6 ft man to lie down there. His head was resting on the wheelchair footrests. The chair was wedged in the doorway but I managed to wiggle it free and grabbed a coverlet off the bed to put under Elberts head. There was no way I could get Elbert up with him in that position so I called next door and Shirley and John came running. Once Elbert was up we noticed his speech was slurred and he still was not making any sense. I would have called 911 but John, being the steady soul that he is, said let's watch him a few minutes and so we did. Before long Elbert was telling his daughter all sort of stuff that sounded like the old Elbert so we knew he was going to be alright.

I didn't sleep worth a darn, heard every noise and was on my feet at each sound but we made it through the night.Four days later Elbert fell again but he was in the hallway so I got him up that time by myself.
May 4th we celebrated our son in laws birthday. There was a big cookout at their house with their children in attendance. We walked over. Elbert sat outside with the guys and before long he was the life of the party, doing one-liners to comments people would make, so much like the old Elbert. We had such a grand time and at nine he was still steady enough for us to walk back home. We have to love times like this.

Leaving by hook or by crook - Feb 2008

February 2008 ended on a very talkative note. Not that it made much sense but it was real to Elbert. Once he blurted out, 'Oh, I left Grandpa sitting in the truck'. I just let it slide by me. Then after he went to bed he called out for his brother (who by the way lives about 800 miles from us) so I asked him what he wanted with Bob and he said he needed Bob to bring him his medicine. I'd already given him his meds but somehow he connected his brother with medicine or the lack thereof.

In the afternoon he had been making preparations for us to leave the following morning.... by bus, no less, and was busy checking his wallet to see if he had enough money for a ticket. He still carries his wallet minus any important papers and with only a couple dollars in it. You can't take every bit of independence from them. He got up and went to the closet to get his clothes packed for the trip. I had one hard time getting him re-directed from that. He was so insistent. Maybe next month he will be much better. We can always hope, can't we?

I wish Elbert was more comfortable with being here at home with me but he is not convinced that he lives here and nothing I say can change that. How nice it would be to say, 'Honey, you and I live in this nice house together. Our family is nearby and we are so lucky'. But, that doesn't matter to him. He gets restless and wants to leave, however he can... be it by bus or walking or catching a ride. Be content, sweet hubby. So, we both can have peace.

.