Birthday's

Tomorrow will be my twins birthday. They have families of their own now, one lives here, the other lives in Arizona. I won't celebrate with Tish, she's too far away. I may celebrate with Pat, but we'll have to see.

I told them both I will get them something on the 3rd of June, when we get paid. They don't expect anything from Mom, but it's nice to give them each $25.00, that's the least I can do.

Monday, that's Leon's birthday. He is very excited that it's his birthday. Like a child. I told him last week I couldn't get him anything for his birthday until the 3rd of June. A few hours later he said all I have to do is give him $100.00 on his birthday. Once again, I explained that we have no money, it'll have to wait until the 3rd. He looked a little sad, but said OK. Later on that day he came to me and said all I have to do for his birthday is give him some cash. I once again explained we have no money, that to wait until the 3rd. This has gone on all week. Each time, he looks so surprised that we have no money, doesn't get angry, just surprised.

I feel bad I can't get him anything. I would love to give him a birthday party with the cash that he wants, but I can't. I will cook him a special dinner and treat him like a King all day Monday. That's the best I can do.

But once again, when he is asleep, I look in on him and, the guilt sets in. Man, I hate this guilt that I feel. Why do I feel so guilty? Because I failed him? Because I can't give him what he wants, when he wants it? Because I failed myself? What is it?

This week has been hard. In more ways than one.

Our "Visitor" will not leave

With Dementia patients, they go in and out of reality, until the monster completely destroys the brain. Leon's Dementia comes and goes. As I've said in previous posts, I call it our "Honeymoon" period. He will be "with it" for several days in a row, then, bam, off to another world.

We had a good period for about 1 1/2 weeks about 3 weeks ago. When the "Honeymoon" ended, he was worse than ever before. It has been 3 weeks with no sign of him coming out of it. This is the longest he has ever been this bad.

Is it the beginning of the end? I have noticed the past several days that when he is asleep, he "talks" alot more than usual. He can talk so loud that it sometimes wakes him up.

His walking, or, his attempt at walking is more unsteady. Hard watching him try to walk. Will not use the walker. Says his cane helps, but yet, he uses the cane and grabs onto walls and furniture to help him walk.

I have to get groceries today. He loves to go with me. I absolutely hate taking him with me, but if I don't, he will not behave the rest of the day. When he wants something and I tell him we cannot afford it, he will have a fit right there in the store. That's fun.

So, I think our "visitor" has come to stay this time. It's been too long. I have a feeling of dread inside me. But, who am I kidding? I knew this was going to happen, that one day he would not come back.

Everytime we hit a new stage in this disease, I am caught off guard. I know what to expect, did my research, have it all down. But, when it actually happens, it can really throw me off. Kind of like riding a roller coaster; you know the big drop is coming, but when it actually comes, it still takes your breath away.

Reflections of a Mother

When my children were little, I would put them to bed, relieved the day was over. Taking care of 6 small children, (my little ducks as I used to call them) was no easy feat. Some were walking, some were running, some were nursing, some were talking and some were screaming. At the end of the day, I would be totally exhausted. Couldn't wait to get them to bed. Once they were all asleep, my mind would go over the day. Did I do enough for them today? Did I feed them, guide them, help them, cuddle them, kiss them, but, most of all, did I do enough to show just how much I loved them? Looking at their precious faces as they slept, my heart would hurt. I loved those babies with every breath I took. Still do.

Now, here I am again. Taking care of someone who can no longer do alot for himself. His mind is going and he needs me more than ever right now. He depends on me for everything. I do get frustrated, especially when I start to do something and he "acts out", like a 2 yr old would. Once again, I have no alone time for just me, except at night. Once again, as I check on him after he has fallen asleep, automatically I check his breathing, his thrashing, his "mumbling", his choking sounds and I begin to reflect the day. Did I feed him right, did I do enough for him today, did I show compassion, did I comfort him when he forgot where the kitchen was, did I laugh with him, and most of all, did I make him feel secure and show the love I have for him?

Ah, God prepared me for this a long time ago. When those 6 little babies were "given" to me, to love, to care for, to comfort and to guide. I say 6 because even though I have 7 children, my Jack came late in life, a time when I had "been there, done that". It was so easy with him, still is.

So, as I reflect on my life as a Mother, I am once again transported back. Back to when the highlight of my day was when they were all asleep and all was quiet. I now look forward to when he goes to sleep at night and my mind can try to get a moment. But, once he is asleep, the questions come back. Did I do enough for Leon today?

Within a year, all will be quiet. I won't have to reflect my day with him anymore. My house will be still all day, every day.

Can I live with the quiet? Can I live with myself, knowing I did all I could with what I had? I ask myself that question every day. There is no answer, time will tell.

One day, I will go before God. He has given me a hard life. As I sit here today, my only salvation through all of this is to hear the voice of God say, "Well done my good and faithful servant".

Hear me!!

When I began to notice something was off with Leon, about 6 years ago, I said nothing. I made excuses for him. It started out small, those little things that for people who were not around him alot would not notice. He seemed fine, but it was those little things that kept nagging me when I couldn't sleep at night, thinking, "Has it struck Leon? Or, is it just me?"

Then, his walk suddenly changed. Most would call it a "limp". But, he still seemed "normal" to the outside world. As the "limp" became worse, I started my internet research. That's how I "diagnosed" him. I just knew deep in my heart and soul that's what it was.

I had voiced my concern to some. It was brushed off, there was noting wrong with him. As usual, I did nothing to stand up for what I believed to be Dementia. Maybe they too did not want to believe it. I don't know.

When we finally got our appointment with his Neurologist, I told the Dr that I thought it was Dementia. I had narrowed it down to Lewey Body Dementia or Familial Frontal Lobe Dementia. The Dr said that it was hard to diagnose and they would start the testing. This was in January of 2010. In April 2010 after test after test, we went back for a consultation with one of the Specialists. After they delivered the bad news, it was late in the afternoon, we were walking out of the lobby, when our primary neurologist ran out to the lobby and called us in his office. As we sat down, he look straight at me and said, "My God, you were right".

Why didn't anyone listen to me in the months before diagnosis? Did they honestly think I was making all this up? It bothers me to this day.

What people don't see is this:
Leon "talks" to people in his sleep, carries on full conversations.
Leon panics when the house phone rings. Sounds funny, but if you saw it, well, it's pathetic.
Leon chokes in his sleep.
Leon asks several times each day what day it is.
Leon cannot walk without holding on to furniture or walls now when at home.
Leon leaves lights, water, TV on, forgets to close doors, forgets to close cabinets.
Leon can't distinguish the freezer from the frig.
Leon can barely operate the microwave, always asks for my help.

Made my point? But, in the dead of night, when I can't sleep because he is "talking" or choking, I think back to when I needed someone to lean on, scared to death that he got what the family called, "the curse", thinking it was all in my head, and I feel alone.

So, if someone ever comes to you with fears that their loved one is desperately ill, don't treat it as if they don't know what they're talking about. Give them the support and strength they need to face it head on. Be there when they need to talk. As I'm going through this and now know how hard it is on the surviving spouse, lend a hand or a voice or just let them know you are in their thoughts. Trust me, we as survivors of a terminally ill spouse need it. We need love too.

Warning: Long Post

A friendly wave or a nod as we take our trash out to the curb on Friday morning is about all anyone does on our street. We are all friendly, just never really stop to talk. Once in a while, our neighbor to the right of us does stop to chat, he's very friendly, a widower for many years, retired from the Post Office.

Our neighbors' to the left, well, we have never spoken to them. I hear them all summer as they have a pool and, on weekends, I hear the laughing, splashing and smell their BBQs.

On Saturday, I noticed they were having a garage sale. Leon went over, came back and told me they had some nice stuff. So, me, being the bargain hunter that I am, went over. I can honestly say that, they are the nicest people. I told Karen that I hear them splashing all summer long in their pool. She told me I was welcome to swim anytime I wanted. As we sat down to bargain for a very old German made grandfather clock, 61 years old, we got to talking. She told me her Father passed a year ago and her Mother had moved into a smaller place, so she was getting rid of the clock. Too many memories. She then told me that her Mother is taking care of her Grandmother who has Dementia. She said that it is one of the hardest things her Mother has ever done. She said that to care for Dementia patients is one of the toughest jobs, especially if it is your Mother. "Or husband", I said. She then stopped talking, looked at me and said, "Oh my gosh, your husband?" I nodded. "Oh, I am so sorry. I knew something was wrong with him, oh, I just realized it. It's the eyes, they're so,,,,,,blank". After many "I'm so sorries", we struck a deal with the clock. Need to get it oiled, but it sure is beautiful, and I paid next to nothing for it. Maybe she felt sorry for me.

Jack has been pretty sick for a few days. Took him to the Dr yesterday. He has Strep Throat. As she was writing his Rx, she said, "Mom, do you need a note for work?" I said no, I don't work anymore. She said, "Must be nice to be able to be home." And then I said, "My husband is terminally ill, so I had no choice." Oh, the look on her face said it all. She felt horrible, but I said, "it's OK, happens all the time."

I hate having to explain why I'm no longer working. I wish I could say the reason is my husband earns enough money. Or, I am wealthy.

Went to Leon's Mother's grave on Sunday, for Mother's Day. I bought flowers for her. Leon will be right next to her. As we were leaving, he looked back and said, "See you soon."

Did you really have to say that? Really?

Mother's Day Weekend

So, tomorrow is Mother's Day. I always get sad on this day. Don't know why, my Mother is still living, I have children (boy do I have children), I don't understand it, I have always been this way. It should be a great day but tomorrow will be just another day for me. But to all of the Mother's out there, Happy Mother's Day.

Now, on to The Dementia Report: Leon has been very calm this week but, also, I've noticed the blank look in his eyes has been constant. He has been very confused most of the time, needing constant reminding of events, people and places. Yesterday, everytime I went down the hallway, the light was on. It finally dawned on me that it was Leon who was turning the light on. When I asked him why he was doing this he said, "I didn't do it". We were the only ones here. Why he was doing that, I don't know. It was during the day, so no light was needed.

Yesterday while we were out, he had to use the bathroom. When he came out, he was pale and confused looking. He told me he had bled all over the bathroom floor. He asked me if I would please call the Dr on Monday. Looks like they are going to have to operate to control this bleeding. He just seemed so scared. I felt so lost when he asked me to call the Dr. Felt so, "wow, I sure wished I had someone to lean on" sort of feeling. It scares me to think I have to make Life or Death decisions for another life. What a responsibility. I hope the decisions I make are the right ones.

He seems quiet this morning. I have offered to take him to the Emergency Room, but he will not go. I am concerned about the blood loss. Will have to watch him today and, if he takes a turn for the worse, well, ya'll know where I'll be.

Until then, this beast is doing it's job. And what a fine job it is.

So, for this Mother's Day weekend, I will be taking care of my husband; a man who cannot think for himself anymore, a man who would love to take his wife out for a special dinner, but doesn't know how anymore, a man who cannot be the man he was before the Beast came to stay and, a man who within the year, will no longer be.

Week Re-cap

This past week has been exhausting. From utter sadness to complete frustration. Of course, Leon saw none of this. Even if he did, he probably forgot it the next minute or two.

The last few weeks have been the most "normal" in a long time. However, as predicted, the monster came back, this time though, was the most powerful I have ever seen it's destruction.

He has been so lost this week. One morning, while doing the breakfast dishes, the phone rang. It's in the living room. He came shuffling into the kitchen and said, (in a panic) "the phone's ringing, the phone's ringing". I told him to answer it and he said, "I don't know how, but it's ringing". Another day I must've told him at least 74 times that the 3rd of May was Tuesday. On Thursday, Jack had a Guitar Recital. Sitting in the auditorium was like bringing a 2 yr old. He was constantly moving, complaining, trying to stretch his legs, and became obsessed that Jack didn't know where we were. As soon as Jack was done, we left. He told me that he doesn't know why (?), but his legs are getting very stiff. He will not use the walker, but thinks his cane is helping him walk. Uh, no, but if I suggest using the walker, well, I'd rather eat nails. It's that bad.

Yesterday was my Marie's birthday. I made some fabulous Beef Stew, loaded with veggies, all organic everything. Marie's boy, Sean, had to go potty, but the front bathroom was occupied. So, he went to the master bathroom. Leon started to get up, upset he was using our bathroom. In front of everyone, I said, "will you please sit down. It's going to be OK. Sean is just going potty". He was so mad that little Sean Boy was using our bathroom. He just sat there and stared down the hallway. When he saw Sean come down the hallway, he went to get up to, and I know this, check to make sure he didn't destroy anything in the bathroom. That made me mad. Once again, I told him to calm down, sit down and enjoy the party. This is Marie's special day.

So, here's to you Dementia, you have done a great job in destroying my husband; totally, utterly and completely. If there ever was an award for this, I'm sure you would get a plaque that said, "Job Well Done". And I would say, "F You".