Archive for December, 2015

It’s a Jolly Time of the Year

Frances and Brad playing a Christmas tune for Jim. December 2015.

Frances and Brad playing a Christmas tune for Jim. December 2015.

I am late packing and loading the car. I am always late these days. And it’s ok. There are worse things in life. I am learning to be all right with my new shortcomings and appreciate my new strengths and recognize my contributions that enhance this world. It is a process that will probably last my lifetime, but one I am steadfastly enjoying being cognizant of.  Life is good. Really. It is.

I know there are many parts of my life that just suck. There is no other word to use (not one I will publish anyway). There are times I am severely depressed. I cry. I sleep. I become a sloth. Again, it is ok. It is a process.

There is another part of my life that is the best it has ever been. The love. The support. The care. The new friendships and re-connecting with old friends as well. The opportunities that have arisen and the feeling of contribution. I am constantly being thankful for something positive happening in our lives, either for myself, our children or for Jim.

This week funding for Alzheimer’s research reached an all time high. Hillary Clinton became the first presidential candidate to make Alzheimer’s research a priority and suggested doubling the amount just passed. That is what we have been fighting for. Surely other candidates will follow.

Our Christmas has already been a wonderful one. The spirit of the season has been sprinkled throughout our home and our lives. We have had much to be happy about. Jim had his two best Air Force buddies come for a visit and he was amazing. He didn’t drool. He wasn’t hunched over. He showed lots of expressions and laughed. You could understand him most of the time. It was like a Christmas miracle. They had such a nice visit. It was good for all of us.

Today, we stopped by his home and he was not quite the same. He was hunched a little and not as aware of what was happening around him. But the staff had decided they wanted to help Jim do what he always does best: Give to others. So, they got the kids and I cards and gift cards and got me a new watch that were from Jim. It was heartwarming to see his smile and feel his hug and his kiss as I thanked him for his wonderful gifts. And the staff. Wow. How thoughtful. How generous. How, how….how do you convey the depths of gratitude? Not only do they take great care of Jim so I can take care of the kids, but they also find a way to give back to us through the material that transfer into emotional.

Our world seems to be full of hate and turmoil and so many events that challenge our belief in our neighbors. Our family is blessed to be reminded each day of the good that is surrounding us even while there is much to be horrified about. I challenge each person to commit to making our world a place that reminds us all of the good we can be and should be. It doesn’t have to be expensive or time consuming. It can be a small gesture or a grand one. It can be whatever you can do at that moment. Imagine if each of us took the time to hold the door open for others, or paid for someone else’s coffee, or picked up that piece of trash someone else threw down or refused to get angry at the person who cuts us off while driving down the road. People make mistakes. Forgive. Know that we each are fighting our own battles. Make the world the place we want to live in and we want our children to live in. There is enough ugliness without adding any extra. I am just as guilty as the next person of not always being the most patient or most thoughtful, but I will continue to improve. Will you?

I was asked today what I wanted for Christmas. Without trying to sound cheesy or like a Miss America wannabe…my true and real answer (besides a cure for Alzheimer’s Disease) is for everyone to be treated the way our family has been for the past year. I wish for everyone to feel the love and receive the help that our family has been blessed with. Life is a rough journey and if we all stick together, the path can be a smoother one. So, my Christmas wish is for all of us to be a little kinder, a little more patient and understanding and little more generous with our time and our love.

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posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Younger Onset Alzheimer's Disease and have Comments (9)

Denied Again

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I have taken the drastic measure of scanning and sharing this most recent Aid and Attendance denial from the Department of Veterans Affairs because many don’t believe the VA would not help us. Here it is my friends, in black and white. Please note the list of forms I submitted under the evidence considered on the second page.

Yes, I can file an appeal. But I am not sure the time, energy and effort will be worth it to just be denied again. I have so little energy and time at this point in my life, I am not sure I can. I am sure I will look back and scorn myself for not doing so. Maybe after the holidays….

I know many who have written to tell me their grandfather, father, brother, neighbor, friends uncle and so forth are receiving Aid and Attendance and therefore we should too. I agree. But we are not. I have filled out paperwork, re-submitted paperwork, spent hours on research and information needed, spent hours on the phone and meeting with various experts and I am tired. I already regret the amount of time I spent this summer trying to get help. Instead of enjoying and cherishing Jim’s last months and days in our family home, I worked until exhaustion and emotional craziness,  day after day, making calls, sending emails, doing research and repeating our story, over and over again in front of Jim. He just sat and listened to me beg for help repeatedly. I wish I could go back just those few months and instead sit with him, walk with him, hold his hand and know that we will be ok. Not because the government will help us, but because our friends, our neighbors and even strangers would eventually save us. I am not mad or bitter, ok, maybe just a little, but only because I can look back and realize the precious time I lost with him that should have been our family time to have together. We couldn’t have known the short timeframe for his decline. And I will never know how he was impacted listening to my pleas and knowing he was the cause of so much stress in my life. Jim has the kindest soul and he would never want to be the person causing hardship. He always is the first to offer help.

At the home he is living in, they have an angel tree for all of the residents. When Jim was asked what he wanted for Christmas his reply was a true epitome of his selfless nature. He wanted a watch for his wife.   That was it. Nothing for him. Just me. Even now, he is still wanting to take care of me and the children. Which, in many ways just makes me sadder. I am warmed by his generosity and love but there is a personal loss felt in each and every moment of my day. Even when I am at my happiest time now, it is shared with a subconscious nudging that I am no longer capable of complete and utter happiness. There is something missing.  In the past several years, there has only been one moment I have felt all my cares leave and I could laugh and feel stress free….walking on the beach recently with a friend. We were able to be free of our worries, our guilt, our minds were open to laughing and sharing stories and it was a needed break.

I have been and still am loved by a wonderful man and a kind and giving husband. How lucky am I to have felt such reverence from my partner? Which is why I find it so hard to be completely happy. I know what I am missing.

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (7)

Sorrows Under the Mistletoe

Brad putting on the angel. Dec. 2015.

Brad putting on the angel. Dec. 2015.

My heart is heavy. My mind is scrambled. My energy wanes day to day. My world is spinning out of control with a speed and slowness that are confusing and indecipherable.

Jim is still progressing. Of course he is. He has a disease with no survivors. This day and this hurt was promised to us years ago. But to be a front row spectator to his absence while being present is perfect torture. I would prefer to be waterboarded while having my eyelashes plucked out one at a time.

He no longer stands up straight. His posture is that of a 95 year old with extremely poor mien, including the shuffling, the humped shoulders and the constant stare at the floor or something no one else can see.

He drools. A lot. Sometimes.

He mumbles. He says a word. He mumbles more. He is silent.

He feeds himself. He needs help being fed.

He is down to 160 pounds.

He has had 4 Urinary Tract Infections in just over two months. He has had a catheter in for that same amount of time.

He smiles. He picks up invisible things off the floor and puts them in his pocket or hands them to me.

He walks away.

He falls asleep while sitting in a chair or carrying on a “conversation”.

He can’t read. He can’t write.

He has had a few days of not knowing who I am.

He often doesn’t know the children’s names, but does usually recognize them.

He loves company but walks away a few minutes after you arrive.

He doesn’t watch TV.

He will still kick a ball or try to shoot some baskets. On the right day.

He cannot go to the bathroom by himself.

He cannot tell us if something is hurting.

He cannot get dressed by himself.

He still hugs me and kisses me. He still lights up when I arrive to visit him. And then sometimes he doesn’t.

He lives each day in his own world and I try to visit and understand but I only end up crying in the car on the way home or late at night when I search through old photos trying to put together a photo album for him.

I show up to my life half heartedly because the other half of my heart and my life has left me stranded midway and so part of my chest remains empty.

There are times I look at him and wish he would die. I see him so unlike the Jim who took so much pride in himself with his straight back, quick wit, and ironed and clean clothes. He would never walk around with pants on inside out or food spilled down his shirt or drool falling down his chin onto the floor. He would never stand for someone else wiping him clean. Then I think about him actually dying and I don’t want that either. I want another conversation. I want another date night. I want him to play in the backyard with the kids or to cheer them on at a game. I want him to walk through the front door, turning the key himself, walking in with the smile I have loved for many years.  I want him to not be where he is or who he is now, but I can’t have the original back either. It is a waiting game. We know the ending, but not the timeframe or exactly how bad it will get. Every time I think we are at a place so much harder than before, it gets even worse.

Each time I visit him, I am exhausted, depressed, lonely, sad and relieved he is at a place that takes care of him so much better than I ever could.

I am trying to keep our regular traditions up for the kids and I suppose for my own sanity. Moving forward. We got our tree at the same tree farm. But instead of the typical lights, the three of us wanted different things: Frances wanted white lights, Brad wanted multi-colored and I liked the ones we have had the past couple of years with red, green and white. So, I did what any stable Mom would do, I said “screw it” or something along those lines and put one strand of each on the tree. I can pretty much guarantee you there isn’t another tree lit like ours and I can also guarantee it won’t win any “best” awards. But I really don’t care. I actually kind of like it. Sort of a symbol of the way I feel: discombobulated and completely unorthodox.

While the kids and I were listening to Christmas music and putting ornaments on our unique tree, Brad stopped, sat on the couch, and just looked at the tree. When I asked him if he was ok, his reply: “We should have brought Dad home to help with the tree. He should be here.”  And he was right. He should be here. He should be helping with the decorations and sipping eggnog and sitting with me after the kids go to bed, silently leaning into each other as we lay together on the couch in the glow of the lights. He should be running to the store for last minute ingredients and attending band concerts and helping with homework and sneaking around to hide the mistletoe so I will end up standing under it so he could grab a kiss. He should be watching A Christmas Story with us for the 100th time and laughing out loud in that way he did, where he almost couldn’t stop.  He should be here, with us, but that will never be again and it hurts. Like Hell. But I can’t wallow in this immeasurable grief because I have to get up, do the laundry, fix some dinner, go grocery shopping, visit Jim, follow up with doctor appointments, put up the decorations, get all the kids gifts together (plus others on our lists) and somewhere in there get a shower and act like I’m ok so my kids can have a decent holiday since their summer and fall have pretty much revolved around one medical emergency after another with their Dad. After all, this isn’t about me. This is about a man who is leaving his children when he desperately doesn’t want to. It is about two amazing kids losing their father. It is about moving ahead while searching for the right way to let go of the past and hold on to it at the same time.

Jim opening a gift from my parents. Dec 2015.

Jim opening a gift from my parents. Dec 2015.

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (26)