Archive for March, 2016

Update

Screen Shot 2016-03-29 at 11.39.47 AMJim is still with us. I say that statement with a very loose context.

Jim is resting. Jim is sleeping. Jim is….Jim is….technically alive.

Waiting to die. The waiting for him to die takes a toll both mentally and physically. And it totally SUCKS!!

Sitting, watching, holding his hand, rubbing his hair. Watching for the slightest change in breathing. Seeing a slight movement of his lips or a flutter of his eyes and wondering what it means? Is he trying to tell us something? Is he in pain? Does he want something? I’m sure he wants a huge glass of water and a very large meal.

His hands and feet were cold. Yesterday they were warm. His coloring goes pale, goes yellow, then he is pink with warmth. Then he is cold and a grayish/bluish tint.

A friend came and played guitar and sang for him. We could tell he heard her. He moved his mouth. His eyebrows raised. His demeanor changed. As it does each time his children enter his room. He knows they are there. He seems to long to reach out and hug them again. His mouth hints at a smile. His beautiful blue eyes struggling to see each of their heartbroken faces.

His legs jerk. He grimaces in pain if his left arm is moved or we try to sit him up. He is getting stiff.

This is torture. For us all. Our friends. Us. And for Jim. He may be out of it, he may be on drugs, but I know. I know. The man I married and have loved and known for many years, did not want to linger. He did not want us sitting around watching his demise. He lived a life full of life and it doesn’t seem fair this cruel disease is robbing him of the death he wanted.

You hear the statement “We don’t treat our animals this way, we shouldn’t treat our loved ones this way.” I never really had much of a thought one way or the other. It was always someone else’s fight. I can tell you, watching him struggle to open his eyes half way, keeping them there, trying to will them to let him see his children one last time….struggling to breath, dying of thirst (literally), starving to death (literally), coughing up the slightest liquid we try to give him……….this is inhumane. Maybe God doesn’t want us to kill, but he allowed us the knowledge of how to take a life with out pain or malice for a reason. Sometimes, we should be smart enough to use it.

 

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (45)

I Got That Dreaded Call

I have contemplated this post. I am wavering on sharing too much and possibly not sharing enough. I am conscious of why I should and why I shouldn’t. Right at this moment, sharing is winning the internal battle.

This is a most private situation. One every single family struggling with Alzheimer’s Disease will unfortunately face. I ask for privacy for our children and for our family.

Jim is actively passing. Or transitioning. Or dying. The key word that I have learned from our hospice team: actively.

I have decided to share with you for several reasons. One, your support throughout the past years as I have struggled and grown as a future widow and caregiver has been unwavering, comforting and life changing. Two, I suddenly realized if I don’t inform you what is happening, the next post you read will be announcing Jim has passed away and it will come as a huge shock and might be very disheartening and traumatic. I am sure this post is. It is shocking for me.

Jim was fine four days ago. Well, the term fine is relative. He was as he has been. Walking, eating, mumbling with some coherent words thrown in.

Wednesday morning I received a call from hospice letting me know he was not well. High fever. Blood in his catheter bag. Low blood pressure. Bluish extremities. And he could not be aroused. A good friend came over immediately to the house to comfort me and assess the situation. Another good friend met me at his facility and sat with me as I listened to all of the medical terms and information that seemed to be important but somehow I was barely able to process what I was hearing.

Jim’s doctor came. He gave his best guess as 3- 5 days left. I was in shock. How was this happening now?  We have long known this day was coming, but it has come with a suddenness that has left me ill prepared. He hasn’t gone through several stages…soft foods, pureed foods, bed ridden, wheel chair, walker, falling….there is supposed to be more time. There is supposed to be more warning.

Yet, here we are. At the end. Unless a miracle happens. Unless his youth and strength somehow prevail. That is what slips into my mind. Maybe this isn’t it. Even though hospice does this for a living. Even though his doctor concurred. Maybe this isn’t really it.

We are not sure what has happened. He fell Tuesday, but didn’t seem to have any issues from the fall. He was checked over twice. He has had so many different issues with his catheter and UTI’s, there is a possibility of sepsis. Or, it could be something we just don’t know.

What I do know is my kids are heartbroken. I do know I thought I was ready and prepared. I thought I would be clear headed and would know what to do, but I was wrong. I do know that the love and support and guidance we have received year after year is stronger than ever and making a difference that I am unable to explain at this juncture of the game. I have been overwhelmed and I am thankful, humbled and indebted.

I am also exhausted. I don’t know how sitting around a room all day can make you so tired, but it most certainly does. Maybe the lack of sleep is also playing a role….

The first day, Jim was unresponsive. The second day, Jim showed some recognition, ate some ice and rolled on his side. The third day he ate ice cream, said some words, mumbled and gave me a hug. Today he hallucinated, tried several times unsuccessfully to get up, ate some applesauce and said a few more words. Through it all he is in pain if he moves his left arm, if we try to sit him up or if he moves a certain way. He also has quite a bit of myoclonus (jerking). There are times his coloring seems to be improving. There are times he seems to be so much better than his initial state, yet in the end, he usually ends up with a blank stare and confused look on his face. He has smiled. He has told me he loves me. He has hugged the kids. He has not had anything really to eat or drink since Tuesday evening. (not enough for the medical community to count as intake). He has been up out of his bed twice since Wednesday. He has looked me in the eyes and with a tear falling down his cheek, reached out his weak hand to touch my face.

This is excruciatingly painful to witness. I know many of you will be very upset by my words. I know you care deeply for our family. I know you want to do something. Thank you.

I had started a post that was going to include a video of Jim from just this past Sunday, just a couple of days before this started. I am scratching that post. But I am going to share the video because I want to show where he was. I want people to see what Alzheimer’s Disease does to a wonderful human being. I want to break the misconception that Alzheimer’s Disease is just old people forgetting someone’s name or getting lost. I want to erase the stereotypical patient idea. I want the stigma that follows a diagnosis to be a thing of the past.

Again, thank you for your concern, your prayers, your support, your love and for continuing to help our family during a most difficult and painful time.

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (64)