Progression?

Last week, Leon got pretty sick. It was a virus going around, so the Dr prescribed some heavy duty cough syrup. We have to be careful in giving him meds because of the anti-seizure med he is on. The cough was my concern. So far, he has used up that syrup and so the Dr said to get him some Robitussin DM. Got that yesterday and after 3 doses, the cough is still there. This cough is almost constant and is wracking his body. He has to sit up alot because this cough comes on like a Tsunami.

Then, I got to thinking: this cough has been here for awhile now. Is it the progression of the disease? Is there something else wrong? As if we need that. Are his reflexes shutting down in the chest area now? I'm concerned and confused. I don't know if I should call the Neurologist or just wait for our appointment in May. Or, maybe I should just do my own research on the Internet, like I did last year and found his diagnosis in cyberspace. (I had narrowed it down to Lewey Body Dementia or Familial Frontal Lobe Dementia, and in fact, I was right on with that). It's hard when your loved one has a terminal illness, because sometimes when you tell them of some scary symptoms, they put their hand on your shoulder and say, "it's all part of this disease". No magic pill to take here folks. Can't go to Whole Foods and get some sort of Herb or Vitamin that will make it go away. So, I'm kind of up in the air. Suppose they give me an emergency appointment only to tell me it's just the progression of this horrific disease. I keep thinking back to when we saw our Primary Dr last week and he said, "if he gets worse, or, cannot breathe, take him immediately to the Emergency Room". I love our Primary Dr, but he is not an expert in all of this, so, naturally, he would say that. He doesn't know.

So, today, I am going to track his coughing and do some research of my own.

I took him with me to Costco yesterday, to get him out of the house, fresh air. He has to push the cart, he needs something to hold on to. I did notice that his legs are getting very stiff. Now, I am not a shopper, get in, get out is my motto. Leon walked so slow I started getting impatient. I tried not to let him see it on my face, but, it was hard. We have a walker for him, but, he refuses to use it. The day is coming when I will have to get a wheel chair for him, and just know the fight I'll have there. He fights me every step of the way. Imagine someone you love has a broken leg, cannot walk, but will not accept a cast or crutches. And I get angry with him about that. He doesn't see it, but I get angry. He fought me on using a cane, but now realizes he depends on it. Now if only I can convince him of using the walker.

So, today I am going to be a detective, tracking his every move, doing my research on the Internet about what this coughing is all about. Who knows what I'll find, after all, I found him this lovely disease which was confirmed by a Neurologist. Or, maybe I should stay off the Internet and let this disease "do it's thing".

A Quiet Kind of Love

Yesterday, being our wedding anniversay and all, I was reliving our wedding, our life together. I had a very quiet morning, kept checking on Leon, his breathing. Even the dog kept checking on him, then coming out to me as if worried. She's so intuned to all that is happening too. I finally woke him up at 11 AM. After he was awake and more "with it", I told him, "happy anniversary!" And the smile he gave me broke my heart. It was so sad and sweet at the same time. That smile told me everything. He knows; he knows this will probably be his last "happy anniversary", and for the first time in all of this, the smile he gave me was one of, "I'm so sorry I can't do anything for you, for us anymore".

I made a special dinner for us and while I was cleaning up, the dog, Bessie, as usual, was hoping for the scraps. Leon and I were laughing at her when I said, "boy, she needs a bath". About 20 minutes later, I noticed it was so quiet and thought Leon & Bessie had gone to the bedroom. When I finished the dishes, I was going down the hall to the bedroom when I heard Leon talking in the front bathroom. The door was closed, so I opened it and there was Leon, soaking wet, giving our beast of a dog, a bath. Now, Bessie does not like her baths, and it takes alot of strength to actually lift her into the tub. She's a big dog. As I stood there with my mouth wide open, Leon looked up at me with the biggest grin. As if to say, "I did it, I did it". Of course, Bessie was looking at me like,
Mom, get me out of here". But it's like she knew this was our special day, she needed to behave. My heart just swelled. This is the same man who cannot even write his own name, let alone lift our beast of a dog into a bathtub, keep her in the tub and kneel all at the same time. But he did it.

For the rest of the night, that's all he talked about. You could tell he was so proud of himself for doing something. For a moment, I saw a glimmer of hope in his eyes, like maybe he's going to be OK afterall? kind of look. But we know that is not to be, he won't be OK.

Funny, yesterday I posted about how he loved to surprise me. I believe God gave him the strength to lift the beast, to wrestle her and to kneel, all for me, for my wedding anniversary gift.

To date, that beat out all of the other gifts I have ever gotten from him. I will cherish this anniversary until the day I die.

Happy Anniversary to me!

Huh, today is my wedding anniversary and I will celebrate it alone, in my thoughts, in my memories, in the comfort of my home.

No more cards, no more surprise gifts, (he loved to surprise me), no more special dinners. Gone, all gone.

But today I will celebrate the years we had and the years I have left with the memories of him, when he was well and we loved.

My Verb?

After searching for a verb that best describes me, I have come to the conclusion that the word Evolve made sense.

For the first time in my life, I am beginning to feel more comfortable in my own skin. I used to stress about what people thought of me, what I looked like, how I dressed, how I lived my life, how I raised my children, where I lived,. everything. Now, hell, I am beginning to embrace this life, embrace the challenges of a terminally ill husband, embrace what I look like, embrace where I live, embrace the fact that people have their opinion of me whether it be positive or negative, it's their opinion not mine, embrace the fact that I was blessed to have 7 children and embrace that I will be a woman who at 80+ years, have the opportunity to "sit in my rocker" (hopefully still watching Judge Judy, ha ha) and have my children & grandchildren learn from my experiences.

I am evolving into a woman who has lived a life, that's for sure, but I wouldn't trade it for anything. I am not rich moneywise, but I am rich in the life lessons I have learned and continue to learn, I have been able to birth 7 healthy babies, I have been able to obtain any job I desired, I overcame a traumatic birth, overcame being told I was an afterbirth, being fat, feeling like the lowest of the low, having a successul marriage and having the determination to do all of the above.

So, I'm evolving into a woman I always wanted to be. It took my husband getting basically a death sentence to come to all of this, but, no matter what, I am learning everyday what I can do. And do I will.

Karma?

Lately, I have been thinking of this word, Karma. I had a neighbor who named her daughter Karma and I thought what a silly name, oh well, she was a silly sort of woman. That was 28 years ago and I have often thought of her and what ever became of her daughter, Karma.

I fully believe in Karma. But, there is a difference in Karma and God. God does not want any of us to suffer. When we are born, we all have paths that we choose to take. Those paths we choose to take are what makes us as human beings. Some of us choose to take a path that leads to a cold heart, some choose to take the more caring side.

Life experiences may make us bitter. I have met so many people in my path who are so bitter they make everyone around them feel bad. I have worked with people like that and they have made for a very uncomfortable work day. Just thinking about some of those people today, well, it makes me feel sad for them as they are just not happy people.

With all of my life experiences so far, I should be one of those bitter people. I have had so many challenges, so many heartaches, so many problems that alot of people could not imagine. But, because we have choices, I made the choice to look ahead, there's something better coming, keep on keeping on, things will get better and so on.

Just when I thought "finally, it's going to be ok", my husband is diagnosed with a terminal illness, cannot work anymore, what the hell are we supposed to do now, how are we going to survive, I was given a choice. I could sit here and cry, feel sorry for us, turn into a mean old lady, make everyone around me feel bad, but what good would that do? Would it cure my husband of this crappy disease? Would it make the bills go away? Would I be given free housing? Would food just magically appear on my table? Once again, here comes the crap in my face.

So, here I am, the same ole' Susie. Put your big girl pants on and keep on keeping on. It's what I do. Karma, you ask? No, I don't think so, it's something I need to learn before I leave this world. Something good will come out of this. Maybe that's why when I see people I haven't seen in awhile they are shocked to learn of Leon's illness. They say things like, "how do you do it? You'd never know by the way you act, my God, how awful for you". Awful? Yep. Sad? Hell yes. Bitter? Nope. This is my life. A life that God made for me and a life that I chose to have. So many things I have learned about myself in all of this, and I now, for the first time in my life, can honestly say, "hey, I kinda like you Susie".

Have you ever....................

Have you ever thought about God, Angels and Heaven itself? I do, often. I've had a few experiences with a "what was that?" kind of thing, but have you really ever thought, "what was that?"

When I was deciding whether to quit my job and be at home to care for Leon, I struggled with it for about 2 months. I was scared out of my wits about it, scared we wouldn't be able to make it financially, whether I could actually be content to be at home, more than anything else, scared silly.

I talked about it alot and then one morning in August, I prayed. Prayed with all of my soul, a gut wrenching kind of prayer. I asked for quidance, clarity and peace of mind. As I prayed, I could feel something I couldn't put my finger on. As I was driving to work, I felt so depressed and my heart just wasn't into work that day. Later on, I had to run errands and was wanting an iced tea. Starbucks was swamped, so I went to the Shell Gas Station. As I walked in, I noticed they didn't have any fresh brewed iced tea, so I went to the refrigeration section. As I was looking at the assortment of bottled iced tea, there was a woman standing very close to me who kept trying to get my attention. What I felt at that moment was undescribable, it was just a feeling. I went to the soda fountain area and looked there, not knowing what I wanted and the woman followed me. Wanting to make conversation I said, "Dang, they don't have any fresh brewed iced tea". And then I looked at her. She was black, with nurses scrubs on and that face. I will never forget that face. It was glowing. It's like she never heard me, she smiled and said, "Jesus loves you so much, you know what you need to do". I felt like I was going to fall down. I looked at her and saw her face once again. It was the face of an Angel. I started shaking and crying and said, "thank you, thank you". She nodded and I left to go to pay for my drink. I was shaking so bad I could hardly pay for that drink. After I paid for my drink, I looked over at the soda counter and she was gone. I looked all over the store, no black lady. I was the only one in the store.

The next day I gave my notice. I have felt confident in my decision to leave work and be home. Yes, financially it's hard, but I wouldn't trade it for anything. Now, everytime I hit a rough spot financially, I think back to that day when I prayed with everything I had and the answer came to me in the form of a black lady with nurses scrubs on at a gas station.

Describing Me

Huh, I just read one of my regular blogs and learned something new. This woman lost her husband 4 months ago very suddenly. She is now learning to live a new life without her partner. Someone told her to describe herself in one word using only a Verb. I am thinking of a verb to describe me, that'll take some time, some thinking. How about you? What's one word you can describe yourself using only a verb?

Meanwhile, back at our home, Leon has come down with a cold and has a bad cough. His body takes a long time recovering from any type of illness now. His coughing keeps him up at night (me too) and I try to keep his head elevated, but, he fights me on it. Does not like his head upright and refuses to sleep that way. Fights me on everything. Make a suggestion? Nope, he will argue with me about ANYTHING. I think it's his way of trying to sound "normal" or know what he's talking about and it absolutely makes me furious. He never sees it, but I am thinking the whole time he's talking, "shut the hell up". Sometimes I'll catch a twinkle in his eyes and takes me back to when the kids were little and they would get that devilish look in their eyes then do something they're not supposed to do. He's like that. When I do see that twinkle, it's like he's come back, but, it's only for a moment and the eyes go blank again.

My Marie and I are going to spend the morning together today. Don't get to see her much as I don't get out and she works. She's got the day off so I am getting a breather today. Looking forward to that.

So? What's your Verb?

Quiet!

This morning, Tish left to go back home. It was a great 9 day visit. I just miss her so much. She has grown into such a wonderful woman, fantastic mother and a comfort to me. Even though she calls me daily, it was so nice to actually see her. Now, my house is quiet and we go back to reality.

Having company, the noise, the confusion, the messes and the great family dinners all made it seem so normal. It just felt so right. Now that they're gone it all comes back to me. Now we are back to our new "normal". And I don't like it. I liked the other "normal".

Albuquerque weather put on it's best for Tish. It has been beautiful. We went to the zoo yesterday and you couldn't of asked for more perfect weather. It was just so nice. A few times yesterday I would pause and take it all in, storing it away somewhere, savoring in the wonderful day with my family at the zoo. Now, when we go to that dark place that is Dementia, I will have that memory in my head of yesterday.

But for now, today is today and we go on from here. It's just that there is gap and a longing for days gone by.

Busy, Busy, Busy

Had to make time for this post this morning. Having Tish and family all week has been wonderful, except for baby Alex getting sick. It's been rough on him and Tish (and Grandma). Thankfully, he is better. They leave on Sunday.

Neurologist changed Leon's appt from the 28th of this month to just this past Wednesday. Was not a good visit. Dr Quintana announced he is leaving UNM in June and will turn over Leon's care to another Dr we saw last year. He is a good Dr also and I liked him. He specializes in Dementia, so I feel comfortable in changing Dr's. I was told this was going to be his last visit, but Dr Quintana said no, he needs to be followed carefully. I'm ok with that.

I told the Dr that he sneaks and drives and the Dr told him he must not drive. His reflexes are very weak and he could cause severe injury to himself or others, but it did not register with Leon. He got very upset and started to cry. This is so hard on him, everything is being "taken" away from him and it's a blow to his manhood. Was a very somber and quiet drive home. He knows this disease is killing him and told me he wants to go to the church he attended as a child, was baptized and confirmed there. Folks, this is New Mexico, and the Catholic religion is strong here. Whether I believe in the Catholic religion or not, if that is what he wants to do, then so be it. So, we will go and see the Priest.

Just when it seems like things are goin on an even keel, wham, another blow. Then, I make the best of it and continue to go on. It's what I do best.

Statistics, Genes and Inheritance

Statistics say that my husband will not die from Dementia. He will either have a seizure that will stop his heart or choke to death. His Mother choked to death.

I am now trying to save for his Casket. Also, I will need in the near future have to make a decision on whether to purchase a hospital bed or purchase a bed for me to put in our spare bedroom. Decisions. I go to sleep at night and wonder if I’ll be woken up during a full blown seizure. He is not there yet, but it’s coming.

He’s afraid he will forget his son. I hope not. His Mother forgot who he was and that haunts him. He watched his Mother die and now knows he gets to do the same thing. He will not go through what she did. Yes, it will kill him sooner than it did for his Mother, but no more suffering seems to be the better choice. So, after consulting with an attorney last summer, being appointed Power of Attorney, we have a DNR on file. His Mother would always be "brought back" after her seizures. He does not want that.

Our son has a 50% chance of inheriting this. He is aware of the chances. He’s 16 now and I feel so blessed to have had him. I made Tish promise that if he is afflicted with this disease that she would care for him if I am no longer alive. She has agreed to care for him. God willing, he has dodged the bullet.

We were offered Genetic Testing for Jack. They have to take blood from Leon, locate the defective Gene, then check Jack's blood for the defectic Gene. Takes a long time. The problem? Our Insurance will not cover it. I asked about the cost, thinking it would be a few hundred dollars. $1,800 to be exact. That is not in my budget. So, we play the waiting game.

If this post sounds dark or depressing to you, well, I can't apologize because this is my life now. I live with Statistics and such. We make the best of each day and go on into tomorrow.

I honestly wished I could create a blog for family and friends on my life, our life, that is full of wonderful messages, newsy stuff, stories of my crazy life. One day that will be, until that time, this blog is to keep family and friends informed of what my life is now, what my life has become.

We still laugh, still joke, still live a relatively normal life, only our "normal" is different. There are many, many families that have a terminally ill spouse or worse, child. We are not alone. You just learn to live your life according to the disease. The sun will continue to rise, a new day will always arrive.

Grief

I find myself thinking about that word alot lately. What is Grief? Are we supposed to Grieve when people we love die, or, are we supposed to Grieve while caring for a terminally ill loved one? When is it "acceptable" to Grieve for a loved one?

To me when I think of the word Grief, I imagine people crying, pounding their fists, shaking their fists at God, no reason to go on, being in a dark room with no one to around, lonely.

I have beat myself up this last year over this word, Grief. Why? Because I have done none of the above. Sure, I did some crying before diagnosis, but, I knew something was wrong when we lived in Fallbrook. Only I never said it out loud. If I did, then it would be true. And at that time, I didn't want to face it myself.

I finally gave in to myself 2 years ago when I accepted something was really, really wrong when I read something.

As I've stated before, Leon was always highly respected with Employers. Was the best at what he did. In January of 2009, I found his paperwork from being laid off in December, the previous month. In it, it said among other things, "Leon's work has been marginal and will need supervisor approval for re-hire".

And then it hit me. I knew. And I cried. Cried for him, for Jack, for what I already had suspected, cried for us, cried for me, cried for our new puppy, cried for his Father, cried for all that we were going to go through, cried for the man I fell in love with, cried for Jack some more, cried for all that we had planned for our future, cried for everything I could think of.

That piece of paper with those words on it spoke volumes to me. I knew.

So, looking back to that dark time, I did Grieve. I got it all out then. I don't have time for this Grief stuff now. It's done. I have to take care of all of us. And it's not easy. Financially, mentally and emotionally.

Huh, I did do what that word Grief means. And to think it all started with that piece of paper.

Visitors

Tish, Jace and the kids are coming this Friday. They will be staying for a week. I am excited. We don't get many visitors, so, it's going to be great having them around.

Tish has grown into such a lovely woman, ha, my litttle girl, all grown up. It's comical in a way, as I watch her with her own daughter, my Leia. Like all teenagers, Leia likes to argue and try to make her point. What's more comical is Tish reacting to Leia. Shades of 20 years ago. Tish now sounds like me. Ha, funny, I now sound like my Mother. And the cycle of life goes on.

We don't have many plans for the coming week, just being together is enough for me.

On the home front, Jack started a part-time job last Saturday. He will only work 1-2 days each week, (weekends) and I am proud of the way he just went out and got a job.

Leon seems to be doing ok. Sunday was not good, but now he has stabilized. Said he had a bad dream about me leaving him with another man in, "a big red truck", (musta been my cowboy) but, he was upset about the dream. I told him I will never leave him, that it was just a dream, relax. When he has dreams like that (often), he stays close to me during the day. It can be suffocating to me. I feel unnerved by it. Then comes evening, dinner, dishes, usual TV shows and he falls asleep. Then, I breathe.

Back to our visitors. I cannot wait to get my hands on baby Alex. That child has my heart. He is so full of life. He's got the spirit in him that's for sure. I feel such a bond to him. Tish is a wonderful mother. It's neat to watch your child be a mother to their child.

Looking forward to a great visit, Leon continuing to stabilize during our visit, me, wanting to relax, being just, well, me.

The Honeymoons over

Ugh

Now we are off to another place that dwells in the land of Dementia.

Honeymoon

We are in what I call the "honeymoom" stage of this disease. It has been a "normal" week for Leon. Normal to the extent of what he can do at this stage. There has been no sudden decline, but, wait, it is coming.

I enjoy this time, but know that it comes to a screeching halt when suddenly, he will wake up and be blabbering about something even I cannot understand. It's coming, but you just don't know when. And now that I recognize it, I am prepared. I embrace what we have now and mourn for what we have already lost.

I have enjoyed my husband this week. We have laughed and joked around and aside from his inability to walk, it has been nice.

How I wish I could change what the future has in store for us. Throughout my adult life, with all of it's difficulties, I have always had a "Plan B".

I don't have a "Plan B" for this.

One day....................

One day, I would like to turn this Blog into a journal of sorts and publish it. If that ever happens then I'll get a little house to live in for the rest of my days.

One day, there will be a cure for Dementia. Certainly not in my time.

One day, my Mother will be gone. That makes me sad and sometimes when I think of her actually being gone, I kind of loose my breath. I love her.

One day, my children will gather and say, "what are we going to do with Mother?" (the thought of that makes me chuckle)

One day, I will be alone. The children all grown up and husband gone. (there's that loose my breath thing again)

One day, I will be gone. What will they say of me? I hope they say that she did her best, even in the worst of circumtances. I hope they say I loved them with passion, I was not perfect, but I had nothing but love and admiration for them, I always had hope that things would get better.

One day, my children's children will say, "what are we going to do with Mom/Dad ?" (and I will chuckle)

All clear

Leon had his colonoscopy this morning. He has hemorroids, severe, but no cancer. What a relief. He did very well. Because I have Power of Attorney, The Dr asked me all the quiestions and I signed for him. (He has a hard time using a pen) When the Dr asked if there were any medical issues, I told him yes, Familial Frontal Lobe Dementia. Leon said, "Yea, but just a little bit". As I looked at him, he had a twinkle in his eyes and I just had to laugh inside. Sshh, Susie, don't tell the Dr. Funny.

He seems to be having a good week, but all of it is temporary. This "good" will come to an end and then he declines more. But, I'll take the good news on his procedure and thankful for a good week, so far.

You'll shoot your eye out!

Remember the movie A Christmas Story where little Ralphie wants a Red Ryder Gun? And everyone tells him he'll shoot his eye out?

This morning as I was mixing Leon's "special" drink for today, I was reading the label and it said, "Bowel Cleanser". And I said out loud to no one, "you'll shit your brains out".

How can something so corny make one laugh so hard as I did this morning?

well, it was funny to me. ya just had to be there