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.

TRIP TO ATTORNEYS OFFICE - Dec 2005

The end of 2005. Dec 30th to be exact, and the children and I have an appointment with an elder law attorney. Now, I had never even heard of an attorney who specialized in laws dealing with just the elderly people but, I've had to learn a lot in a hurry. The Alzheimers Support Group told us we caregiver needed to be thinking about how to handle the 'other end' of taking care of our lives. In other words, be sure you are financially secure. We had found a young attorney, Tim, who had met with us earlier and now we are taking Elbert to get some signatures and Tim will explain to him what is going on.

Elbert is an agreeable person. He doesn't want to cause trouble. So much like he has always been but we are talking here about taking his money, his freedom, his independence, everything away. I don't know how he will react so I am nervous all the way over to the office. The children and I talk and we managed to let Elbert know where we are going but keep as many details as we can to ourselves. It's just easier that way. I told him that we were just going to update some of our paperwork, you know, wills and that sort of thing. He seemed to understand that.

Once in the office Tim took command and he was so good. Easy, no stress, explaining things without upsetting. Tim took one piece of paper work (Power of Attorney, Wills, Deeds etc) at a time and Elbert signed them as did I. Then Tim told Elbert that we needed to put just my name on the house deed. Elbert seemed a bit agitated and confused. So, Tim just changed the subject and started talking about foxhunting, a hobby that had been so important to Elbert all his life. Once Elberts mind was on the dogs and the chase Tim brought up the deed again. It was kind of sad/cute. Elbert kept saying 'But what if she throws me out'. over and over. He seemed real concerned that he might not have a place to go. Shirley stepped right in reminding him that he had always wanted me taken good care of and if he want me to continue to be taken good care of he needed to sign the papers. And, he did. Just like that.

We have a little money, not a lot, and I know that the expenses of caring for someone with Alzheimers is huge. Depending, of course, on how severe it gets and how long it lasts. I know I have a lot of financial responsibilities ahead of me. I'll have to be smart about it and make sure what we have will see us through to the end.

I should have had some strong feelings one way or the other about all of a sudden having all that with just my name on it. I am married, have always been part of a couple, with one income and a husband who took care of most of the 'heavy' stuff like taxes, deeds, stuff like that. If it does anything at all it makes me realize that I am pretty much alone now, that the man I married has slipped away and I am to do it all by myself. That's pretty much of a huge burden and I feel the weight of it on my shoulders.

On New Years Eve I lay in bed knowing that it is stupid to wait until the midnight hour to see the new year in. I need my sleep. So, I think about New Years Resolutions. None. Just have an urge to start 2006 with a clean slate and everything running as soothe as possible. I pull the covers up, turn out the light and fall asleep.

Panic Attack then Depression

It's late Sept (2005) and I had a very sleepless night. All during the night Elbert complained of a pain in his left side. He seemed sort of burpy so I gave him two Tums hoping that it would relieve him. I slept very light, hearing him get out of bed, move around from room to room, going to the bathroom and back. I am getting very alert to sounds in the house now, especially at night, listening for signs of confusion and distress.

I sense him standing at the foot of my bed.

'I'm having trouble breathing,' he said. 'Would you come and sit with me?'

So, I crawl out of my bed and go crawl into his. His breathing was fine. I thought to myself that maybe he was just nervous about his tummy not feeling right. I thought about taking him to the ER but there seemed to be no other symptoms other than that aggreviating ole tummy. At seven in the morning I snuck out from under the covers and crawled back in my bed. He sleeps in the middle of the bed and he snores and he has a jumping that scares me when he is trying to go to sleep. My leg is just not well and there was no room for me to rest. Once back in my own bed I fell asleep and got two hours.

Elbert slept until eleven and when he awoke he had no remembrance of having a stomach ache or staying awake nearly all night. He was fine. Now, tell me what caused that. I do believe it was the first of several panic attacks. But, it would be several months before that happened again.

Christmas came before I hardly had time to think about it. Time is really slipping away and I seem to get less and less done. It's hard, too, to be in an upbeat mood when you worry about everything that is going wrong, the sleeplessness, the panic attacks, some facial cancer surgery and so on. The family all seems to be busy with their own preparations for the holidays. Elbert and I are sitting alone in a big ole house.

Christmas Eve is a sad and lonely day for me. I am in a funk and just can't seem to pull myself out of it. I call our son who lived in another state. He and his wife don't answer. Then I remembered that they were on the road to go visit her brother. I called my sister. She was out picking up her already baked turkey. I turned on some Christmas music but that just makes me more sad. Nothing I do seems to help. I decide to bake a Tennessee Jam cake. I've had the recipe for years, never have made it and this appeared to be a perfect time to lose myself in something I have to concentrate on. But the thing was no good when I got it finished. So, I threw the recipe and the cake in the trash.

The hours crept on and late afternoon came. I called daughter Shirley to ask her about our schedule for the following day which would be Christmas and I could not control the tears. I was so sad and miserable.

'You get yourselves over here' she said.So, Elbert and I put on our coats and walked across the yard to her house. I helped some with food preparations, some Christmas music was playing, her children were coming and going but there was just something wrong. So, Elbert and I trapsied back across the dewy grass and went to bed. It was 8:30. I wish Christmas was over and done with!!

ANOTHER SURGERY AND OTHER PROBLEMS - 2005

August 2005 and it's time for my left knee to be replaced. There have been so many changes in Elbert's situation that I dread it much more than I did when the right knee was done. Lessons learned during that time perhaps will carry us through.

Early one morning, Shirley and Elbert take me to the hospital. While they wait for my surgery to be over Shirley walks him around the rose garden hoping to distract him. He understand little of why he's there but does enjoy the flowers. The days that followed my coming home he just sat and watched my every move. 'You don't look sick', he'd say. I know he wanted me up taking care of things as I always did. And, he wanted company. He did so love to be with me and I spent every moment I could in his presence.

Once again the children help out tremendously. What would we do without our children and grandchildren?

 Six weeks into recovery, everyone has gone back to their lives and families and I cook my first meal, leaning for support against the kitchen counter. Elbert is no help. I want him to do simple things like turn the light on for me. But, he doesn't remember where the light switch is. So, I hobble over and do it myself. Things are so tough. I will be glad to be well again.

During all of this I have come to the conclusion that this house is filled with things that just clutter and make life more difficult. Sure I wanted that extra table, those pretty throw rugs on the floor, the nice dishes that were on sale. They make the house look so nice. Well, nice isn't everything. Right now my priority is survival. People have to do what they can to survive and we are so into the survival mode right now. So, I decide to get rid of some things. The rugs need to be taken up anyway for safety's sake for both me and Elbert. How many dishes does a person need? So, that one set can go. Son in law John has enlarged our bathroom so that it is handicap accessible. That one thing alone made our lives so much more easy and simple. I rearrange furniture and take up rugs to make our pathway clear and easier for us to go from room to room. That makes my work a little less. That's a good thing.