Two steps forward, three steps back....

Jack came home from school. His eyes were heavy, shoulders drooping. He had a look of troubled hopelessness. "I have something to tell you." My heart sank. What had he done? What could he have possibly done to be so serious, so focused, so sorry. Speeding ticket, car wreck, suspension from school? Got in a terrible fight and hurt someone. Bad.... What could it be? "I decided to call my dad on my lunch hour... you know? Just to say I miss him." He paused, swallowed long and hard.... it was then I could see him trying to hold back a flood of tears. Then he breathed a deep, long breath and continued," When he answered he said, "Who is this?" I said, "Dad, it's me... Jack." Who? "It's Jack. Jack, your son." But I don't have a son" He doesn't remember me. He doesn't know he even has a son.

I was aghast when he shared this with me the first time. Later that evening on one of the many phone calls we get from Bill every day, I asked him to help his baby boy. I explained that a dear dear friend Jack has known all his life has had a terrible accident and does not know Jack anymore. I explained Jack's sorrow, and asked if he could help. Bill responded to me in my favorite, supportive father tone, stating,"Tell Jack he can still be friends with this guy. Just remind him who you are. Just be his friend for who is is." Bill then talked to Jack to support him, not knowing he was helping Jack deal with the grief of losing Bill.

Ups and downs- the real life

My mom made the most profound statement to me today. She was quoting from a conversation between my cousin, Margie and her mother's friend in regards to dementia. Margie's mama, my sweet Aunt Doris, has a form of dementia. It has been a sudden onset and, although she is in her mid 90's, Aunt Doris is one smart cookie and one good lookin' gal and we are all grieving another change, another loss in our quickly shrinking family. Doris' dementia like Bill's dementia has brought extreme confusion and raging fear. The friend shared in sad remembrance that the day her mama no longer remembered her was solemn and... guiltily peaceful.

Yeah, my Grandma Roush always used to say growing old isn't for sissies. I don't know about the rest of you, but I am not exactly sure how to face this era of my life. Sometimes I just want to ball my eyes out, almost reliving the grief at times. Oops. I got off on a tangent, again. I'll add that I miss most of all my daddy. His wise words and wonderfully ornery sense of humor is exactly what I need. He could always make me laugh. Well, almost always. Th last conversation I had with him was over the phone. Bill was obviously very sick and I was crying as I told daddy I didn't know how I was going to get through this. He said, "I know, sissy." That's it. But it made me feel better.

My devotions today said,

"They say if you love something, set it free.
When you let go of attachment to outcomes, the Universe is free to work its magic, and it's a great opportunity to learn to trust that even if things don't go the way you hoped, the Universe has always got your back.

I think I'm mad about having to let go. I make things better, damn it. It's just what I do. I think when mom got sick and we almost lost her, it wigged me out more than I thought. I lost dad. I hate/love Bill and I see more and more of him disappearing. He sheds tears when he tries to figure out what is going on, why he is in the nursing home, why things are so ""mayonnaise" like when he tries to sort things out.

You can see it in his eyes. You'll look at him and he'll be staring out with this blank look on his face. It looks peaceful, then all of the sudden he struggles to get back to being aware. He grimaces, processes, tries to talk about it out loud to help it all make sense. All you can do is reassure him when he is like that. Yes, that's right. Yes, it's ok.... and I find myself lying to him just to offer him peace, give him hope. He's so vulnerable.

I hate what I see happening to myself right now. Again, do I want to be openly public about admitting that at times, I struggle? I fear? I dream. Oh my gosh my dreams are insane. Admit that I'm upbeat and seem to have it together about 80% of the time, but that extra 20% is painful. The nursing home definitely solved safety issues. The remaining issues can overwhelm. In the whirl of the past 9 months I am finally understanding that I am dealing with three entities: the courts (overturned Bill's divorce and restraining order from me)and the legal issues of being guardian and conservator; Social Security for Bill's disability; and SRS for Bill's medicaid. I keep getting report requests. And sometimes the stacks get taller and taller. In order to figure out what I am doing I have to sort through a fifteen inch stack of paperwork. If it is not completed, well, it's just not even an option. People's lives depend on it. And Bill is so confused about the placement. I am torn between doing the right thing (??? is there a right thing?) such as getting him out for rides, visiting family, shopping for his needs, helping him stay groomed the way he (used to) like(s). And working. Trying to work. Concentrating. Sometimes, and I apologize right up front to those who have had to witness this insanity, the result leads to, well, this...
and these

Slap me in the face. We do what we have to do because it's what our heart tells us. Bottom line....

Something's Wrong With My Husband....

The Alzheimer's dementia is rearing it's ugly head and is slowly taking over Bill. He struggles with putting his sentences together with correct word usage. For instance, how’s your coffee was answered by, “It tastes together, honey. It really is.” I got the meaning. At moments- amazingly even at the right moments at times, Bill’s speech is fluent, forcible, and even persuasive. He expresses his emotions strikingly well, although the words often do not reflect what he is thinking.

Right now Bill is the happiest I have ever seen him in the twenty five years we've been married. He's, well, “ likeable” for better words. At times he’s down right delightful. This has really messed with Jack and my grief process. It is so much easier to be mad at him. Just the same, we are trying to make his life (and Jack's) full of good memories while they last.

He talks about living at the facility. He says he hates the food but what I think he misses variety. If you eat out at the same place meal after meal, day after day, it gets old. He has a hard time getting started when he walks, now.

The Thanksgiving holiday went smoothly. With the help of his medications, Bill was able to share the time with us in our home. He was thrilled to see his dog and to be in his "big pretty home" with Jack and I, my mom, my brother and his family. We wanted to make it special for Bill. He's been anticipating a vacation from his "job" at the nursing home for weeks and the Director of Social Services in his nursing home added that we may not be able to take him out much longer due to the increase in his confusion. He spent the day with us Wednesday as Jack and I prepared for company and good eats. Bill wanted to do laundry, so we walked through the steps of washing clothes over and over, same load **). After that he got restless so we ventured out to the garage, his favorite play ground since the dementia. I was able to keep him from taking the mowers apart by redirecting him to clean his equipment.

After a bit he begins to look around at all the tools, and he finds the air compressor. "Hmmm," he says."Dee Keller... Dee Keller..." I said, "yep, my dad gave you that for Christmas one year." He grins from ear to ear. "Wonder how...." so I put it together and powered it up- (sorry neighbors). He was thrilled and had dust flying everywhere.

He was grinning from ear to ear and I looked like I had been camping in the wilderness for weeks... dirt from head to toe.

On Thursday I picked him up very early, and we showered Bill, grooming his beard and mustache and other basic grooming areas he's been so particular about for so many years. He's resisting taking baths for the nursing home, so we make it a big deal at the house. He spent the entire day, once again, at the house, not being distressed at all that his clothes are gone. I was very worried about that.

After I got done with cooking and cleaning up, I decided to lie on the floor, full and happy, and found myself in a family dogpile. Jack smiled, and said, "This is just like the old days. Thanks, mom." It was good, and I was very glad that we had the opportunity to help build some positive memories after so many years of being caught up in survival, anger, and abusive outbursts from his dad because of the dementia. It wasn't long after that when Bill walked into Jack's bedroom where Jack was playing his video games. Bill looked at Jack silently for a few moments, and then asked, "Now who are you again?" Jack swallowed hard, with a sad look on his face. He smiled kindly and said, "Well, dad. I'm your son." Bill very matter of fact said,"oh, ok. Thanks." and he proceeded to the next room. Jack was crushed, and commented on his face book that this was the worst day of his life. It wasn't the first time his dad had forgotten, but it was after one of the best days Jack had had with his dad in a very long time, and it hurt. Jack was able to get past it and help me with his dad.

Even though I live this every day, when I sit down to express myself, to talk about living with Alzheimer’s, I run into so many roadblocks because talking about this brings on so many extreme emotions. I practice meditation faithfully, and believe that refreshing the spirit, rejuvenating the energies is a saving grace. I think one of the most calming admissions I have ever made would be I don't know what I am supposed to do. I also have to tell you honestly that many time the fear of surviving outweighs keeping my eye on the big picture in how I can use this experience to help others, to make a difference. I think back on Maslow's Hierarchy of Needs...

The worries of survival fill me with anxiety. I truly just do not know what I am supposed to do, sometimes. I am grateful for my faith and ability to overcome and be positive MOST of the time, lol. When I feel overwhelmed, I draw back into my meditation, focusing on the chakras and prayer, allowing God to cleanse and refresh my heart with peace. Dr. Howard Fillit, clinical professor of geriatrics and medicine at NY's Mount Sinai School of Medicine, is involved in much research regarding stress and the development of Alzheimer's. There's always going to be stress. It's how we react internally to stress that is damaging.

The stress we experience causes our body to go into fight or flight response as well as filling us with an overload of chemicals called cortisol. After a time of being flooded with cortisol, it damages and can actually shrink the hippocampus, which of course is linked to regulating our stress AND our long term memory. Now, I have to ask myself:Bill lead one of the most stressful lifestyles I have ever experienced. He was never satisfied, never allowed himself to celebrate successes, too worried about the next step, often talking about moving on after only a short time living in the current setting. He was a restless, unbelieving spirit. He had little trust for anyone outside of me. I often blamed that on his experiences in the prison for so many years. Anyway, now he is at ease, he is in peace, content, lives a very meaningful life in the nursing home. As part of his ""job" in the nursing home, he spends a lot of time with the other residents visiting, befriending, serving. During this time, he has taught a young man with a traumatic brain injury to walk and to talk again. The staff is all "that was totally Bill." There is purpose in his life. While it is difficult to watch him deteriorate, I have never seen him at peace and I am, in an odd way, happy for him.

Research shows that the practice of long term meditation and filling your thoughts with positive images helps to stimulate the parts of the brain that leads to greater mindfulness. As we stimulate the anterior cingulate cortex, we are developing a natural defense to stress but developing the area of the brain that dampens negative emotion (circuitry in the left prefrontal cortex). I believe that by living a spiritual life has allowed me to be aware of the affects of stress and grief on myself, on Jack and has kept my heart seeking peace, being able to face this with a certain amount of laughter and joy and being able to share the strange experiences in our lives in a matter of fact way with a human touch.

Hugs to all- Lyn