Hard Times

I always knew there were going to be harder times ahead. Even though I have gone through some of the hardest months of my life, I always knew the worst was yet to come. I think I am just about there. I feel like I am really losing my husband now. His mind continues to play tricks on him and I have a hard time sitting and listening to the craziness. It is not just the waking moments after dreaming that he has a hard time deciphering....but now it is all the time. We can be sitting at lunch and the majority of the conversation will be Kenny still sifting through a dream he had and trying to grasp whether is was true or not. I often get asked "that doesn't ring a bell to you?" as he is telling me some strange thing, fully expecting me to know all about it because I was 'there' too.

Last night we were in bed no more than a half hour and he was already starting in on his mumbling. Then "you're awfully close to me"....(gee...we always spoon....what's the problem?!) "am I too close"?...."yeah".....so I move away from him and then he started telling me that I was like a suction cup sucking back his head and shoulders. Then he wanted me to go turn off the computers in the house because they were doing some strange thing I know not, but I humored him and turned them off. All the while I was pretty frustrated and even threatened to sleep in the other room. I figured if I was sucking the life out of this guy I would do us both a favor. I didn't go. So....I spent the night, putting his legs back in bed and listening to his ongoing dialogues.

We still have good times too. Last night we met with friends for dinner. Kenny is so quiet though. He rarely speaks. Of course we all understand and no one feels like "what's wrong with Kenny". We know. Speaking of friends, I was telling Kenny the other night that I have been feeling like some of the friends that have been around us are not around us as much now. He had a good analogy in that it is similar to a basketball game. As the game is going on, everyone feels free to take a shot whenever they feel they may have a chance. But when the game is in the final minute and there is a tie, taking a shot means a whole lot more and some of those who would take the risk earlier, won't take it in the end. We are in the final round...the last few minutes of the game....we are nearing the end and I know it can be uncomfortable for some, and others just don't know what to do or say. So the safest place is to stay at a distance. I understand, I really do. This is one finale I cannot distance myself from even though at times I would like to. I am front and center and must stay in the game to the end. I want to make the winning shot. I want to finish this one well.

A New Twist on Dreams

I woke up this morning feeling super refreshed. I actually fell asleep watching TV last night, then once in bed, out like a light. I woke up knowing I had slept the entire night without waking up once. I was even able to linger in bed for awhile before getting up. Very, very nice. VERY nice.

Then Kenny asked me about my dreams. "No....I don't think I had any". He told me that HE had a dream that I was telling him about MY dream. It was a pretty crazy dream apparently and I kept him up all night telling him about it. Kenny didn't talk in his sleep last night which is one reason why I slept so well. He said he was listening to me and I was going on and on about my dream and basically driving him nuts. We both chuckle...."just getting a little of your own medicine, that's all".

Hmmm..... I think we may be on to something....

Caregiver

I don't think I make a very good caregiver. I really don't like flossing other people's teeth and a lot of other things I won't mention. It's really hard for me, and at times I can get a little queasy. I don't like shooting out of bed with "sweetheart, can you get me up" and being "on" before I even get a cup of coffee. Kenny used to sleep until 9 or 9:30 and I liked that. I could get up at a decent hour and still have a couple of hours to myself before he got up. But not now....crack of dawn and he is wanting up. He also wants to stay up until midnight, and with his talking half the night I almost always feel like I am just not quite cutting it with a good night sleep. When he does get up early, he more than not starts talking about his crazy dreams and frankly there are times I really don't want to hear about them. "I WANT TO SLEEP!" But I listen, and try to help him decipher what is real and what is not. He asked me to do this for him, otherwise he gets sort of obsessed with his dreams. Only when he comes to a full understanding that it truly was just a dream can he give it a rest. I have seen him go to the computer to try and figure out some crazy idea he is sure must be true. Poor guy....his brain is getting affected by carbon dioxide poisoning.

I think of that song "he ain't heavy, he's my brother".....and I wish I could think like that ALL the time. Kenny is so amazing, such a great person, such a love, but I have to say that sometimes he can be a load. But not for long. There are just days, or moments when it feels like that. When I feel tired and I don't want to floss teeth, or change his clothes, feed him, or move him from the chair to the couch, or..... yes....there are times where he feels heavy. But it doesn't take long before the love he so willingly gives me comes shining through and I cannot help but love him back.

We laugh too at some of the silly things he "sees". Yesterday as we were driving home from church he was dosing and then I noticed he was looking down as though he was looking for something. "What are you looking for"?...."Oh...he was asking for a receipt or something"...."who is 'he'"?....."oh, some little troll". Well...couldn't help laugh out loud with that one. Kenny just smiled feeling somewhat satisfied that I found it so amusing and that he, in some strange way, brought a huge smile to my face.

Question

Yesterday we were driving to town and things were quiet in the van. Kenny usually doses while we drive so I try to let him have that time to rest. Out of the blue he asked "how many more days do I have to live?". I honestly wasn't sure if he was having a dream and the question came out, but I answered that I didn't know. "How many days do you think you have?" I asked him back. "30".

In all honesty I would be surprised if he even had 30. He labors so much in his breathing and he is tired all the time. I told him in the van yesterday that I am so proud of him....the way he has gone through this difficult time so well. He thanked me and said that means a lot to him because at the beginning of this journey he made the conscious choice to go through this well. He was glad I felt he had. He asked how I was doing.....was I ready....and I told him I am prepared as well as I can be. I have been in the acceptance phase for some time now and even though I may move into denial, or anger, or..... I don't stay there long.....I am back to the place of accepting and remain there for the most part.

We have had a trying morning. Nothing different from the ordinary other than I am finding my patience running thin. I am cheerful on the outside though. I never want Kenny to feel bad. We have been up since 6 and throughout the morning there have been innumerable transfers from bed, to chair, to bathroom, to bed, to chair, to.... and all the while, sweatshirt on, sweatshirt off, sweatshirt on, sweatshirt.....slippers on, slippers off....water, ice tea, water, ice tea.... spoon feed cereal.... get more prunes! And then just now I got him in bed for another nap and he said "Thank you so much for letting my fairytale life continue....our little bit of Tuscany here...." With that, my patience that was running on the thin side is restored to full order. How can I not love this man and cherish whatever days we have left. I want, as much as I possibly can, to make his "fairytale life" continue to the end. Just like Kenny told me yesterday that he wanted to "do this well", I too want that. I want to "do this well" too.

Busy!

We have been really busy lately. In the midst of everything that is going on with Kenny, he still seems to have more get up and go than even I do. He loves being around people where I can easily stay home. We got together with the kids on Mother's Day and Nate teasingly said "I bet you love to use Ken as an excuse to get out of things" (he knows me well). Why, yes, I have done that I suppose.... "oh, sorry....I don't think I can do that walk with you today....because Kenny...." Yes...I believe I have done that a time or two but I'm sure I really thought it was necessary at the time. The truth is I don't have a lot of "free" time so every planned event is a bigger deal than it might be if things were different. If I am going to meet a friend for lunch, I need to make sure Kenny is busy somewhere else, having his own lunch with his own friends. Only then do I feel good about leaving him for a couple of hours. But....if that lunch with my friend should get cancelled....ah....I just bought myself two free hours. Of course I can't cancel if he really is off and taken care of....but I believe there may have been a time when I thought he wasn't going to be. Silly me.

We really have been busy though. This weekend was filled with a Kentucky Derby gathering on Saturday, Sunday with kids in the afternoon and our church group that evening. Monday night we threw our own little happy hour party with some close friends and yesterday we went to the movie. This man wears me out! Today he is meeting his uncle for lunch and I am going to....not sure. I will reserve the right to decide at the moment and not make a "plan".

Conversations

Yesterday ended up being a very nice day. The weather here was absolutely beautiful so Kenny and I decided to go to Bernardus for a late lunch and sit outside. We canceled hospice for that afternoon so we could linger. I rarely have a glass of wine for lunch but it was perfect with the best pizza ever and the beautiful surroundings. My emotional state was quite high and we both seemed really happy and joyous. It seems weird that in the midst of all of that our conversation was about his memorial service and obituary. It really wasn't sad, nor did it feel awkward. It was like most conversations with Kenny...easy.... and even yesterday, enjoyable.

My thoughts go back a couple of weeks ago. Kenny asked me to tell him one thing I would miss about him when he was gone. It didn't take me long to answer because just the day before I had thought of one thing in particular. It was a Monday and we had both gone our separate ways. Kenny went to the Pacheco Club and I went with a local horse trainer to the SPCA to pick out the next horse she would take back to the ranch and get it ready for a new home. It was especially exciting for me since the horse we were looking to pick was possibly going to be mine. Larry packed us in his truck and we drove the 200 green acres looking for the herd. Once we found them, we got out of the truck and they came running. This beautiful group of not long ago abandoned horses with a few colts running by their mother's side. It was a great experience to be there at that moment and I could hardly wait to get home and tell Kenny all about it. That is what I will miss. One thing I will miss. Our conversations. Telling my life, my story, to someone who I know wants to hear. He has told me several times "I could listen to you all day....I love to hear you talk". I never seem to bore him. So the day he asked me that question, my answer was right there, because I had just been thinking about it the day before. I had thought..."what will it feel like to come home after that experience and have no Kenny to share it with". When I told him that one thing, he said "I still want you to share with me, even when I am gone, I will still be with you". So, more than likely, I will speak out, I will hope and believe that somehow, in someway, he hears me. But I will miss that.... I will miss a million things about him, but I will most definitely miss sharing my life on a daily basis with the one I love with all my heart.

Mind Games

Kenny has been experiencing some pretty vivid dreams lately. For the past several weeks he has been talking throughout the night. Not just words here and there but full dialogues. He remembers everything too. Like if I ask him "what did you mean when you said 'if anyone wakes up early I'll sue the pants off them'" ? He will go into detail about the cat who said that. But most of the times he is dreaming about some big business venture he is on, or that the room is full of people or even the bed for that matter. He sees things in the room at night, or the bed is weirdly shaped. Last night he was talking about our magical room and explaining why it was so. For the most part I just let him talk, but sometimes I will tell him he is dreaming. Sometimes, if I am wide awake, I will lay there and listen and find it quite amusing.

Usually at least once a night he tries to get out of bed, which basically means he puts his legs over the side and that is as far as he can go. I am thankful for that....otherwise I would be dealing with a man who could possibly stand and fall. So...his legs go over the side, and he can go no farther, but he cannot get them back on the bed. That is where I come in and get him settled again.

He has been sleeping most of the morning. Today, when he woke from his first nap, he asked if Gianti was still here. Gianti? Who the heck is that??? We both laugh and later at breakfast he said Gianti is the other caregiver but he doesn't look like his name should be Gianti. (of course, there is no such guy) so I asked him what his name should be and he said "Tiny". "Oh...so he's small".... "yes, very"....and so it goes. He also said another thing that sent a chill through me when he woke from his nap. He said "I think I am going to die today". what??? He said he is reading a book with other people (he is not) and the main character is suppose to die today. He is suppose to die the same day as the main character. So..... (sigh)....another day of my baby slipping away.

He did say yesterday when he was in clear form, that he really does feel he is in his last days. He said the past two or three days he has felt very different. Before, even though his body was failing and his breathing labored, and although he felt tired at times, he still felt normal. But now...no...not normal. We have some papers to sign that needs a notary that we have been putting off. He said this morning "let's go do this today before I get too loopy". Poor guy.

He told me last night that as much as possible he wants us to have a great marriage to the end. "Let me know if I am not being a good husband, ok?" That guy. I cannot believe that in all that he is going through one of his main thoughts is how to be a good husband to me. How to love me well and what he can do to make my life better. I cannot believe how fortunate I have been to know this man and to love and be loved by him. In all the ups and downs and craziness of this life, I have been so blessed to live a fairytale.