sharing another's view point

i had another post in mind to write but i asked and received permission from another caregiver to share with you what he wrote about his journey that he and his family are on with his wife's early onset alzheimer's. it is beautifully written and i can't think of a better analogy that is so easy to visualize. 

"The Sled

January 15, 2014 at 7:58pm

Once upon a time there was a normal family. The man, the woman, and the two children. Like other families, they had a large sled which they pulled up hills, and rode downhill. Upon this sled rode various crates. They had labels, as most crates do. These crates made pulling the sled uphill a task. Not an unbearable task, but a task nevertheless.

They were proud of their sled. It was built very sturdy. Only the finest wood was used, and the runners were made of very strong and resilient steel. The Man took pride in keeping their sled ready and able to carry their load on their daily journey. Daily they left their home to pull the sled. Pulling uphill together took teamwork, and they all did their part. The Children were out to the side of the sled as this was safer. If the sled moved forward to fast, they would be able to jump on top and go for a ride. The couple pulled as one, always aware of the other, keeping a rhythm that they were comfortable with, and got them where they needed to go. As they went on their journey, it was only natural that they saw and accumulated things and memories that were important to them and their children.The things they put in one of the boxes, and the memories were stored in a far more solid, and important crate. They enjoyed the trail they were making. The hills they climbed were at times difficult. But it taught them how to pull together when they needed to, and also the slope downward gave them freedom to ride, enjoy the view, and think and do their separate thinking. One day as the couple were talking about how their children were growing into fine young kids, there appeared a new crate on the sled. It was there.... right in the middle of the sled. It took up space, but no one seemed to want or bring attention to it. After all, it didnt weigh much, and they were too busy with the ups and downs of their journey to think much about it. After one especially busy, hard day, the man noticed his wife was putting her memories into this new box. He didn't ask her why, he was afraid of the answer. He had noticed that his wife, while she was still able to pull with him up the hills, her attention and her gaze kept going to that new  box on the sled. When he finally did ask her  why she was putting her memories into this new box, she just shrugged her shoulders and couldn't explain why. As the days and the time passed, the woman found it harder to keep up with the daily routine of pulling the sled, riding on it, watching the children, all the fun things she had always done. Now it took alot of effort to do these tasks, and she started to forget the reason why they were on this journey in the first place. The man could no longer deny seeing his wife struggle. One day when they had time, they stopped on their journey and asked a very intelligent man about this new box on the sled, and why was his wife having these memories go into this box? The wise man knew the answer. The box is called Alzheimer's. He told the couple that all her memories were being stolen by this box. And as he explained to them, this box will be with them until the journey is over. It will be full of her memories, and she will not get to keep her new memories anymore. Well the man did not want to listen to this anymore. He read about this box, and thought about this box, and surely he could get this box off his sled. Between pulling the sled, trying to make their journey seem just like all their friends paths, the children were now pulling more and riding much less on this sled. This made both the man and wife sad. They should be riding and laughing, not pulling and struggling so hard. One day the man seemed to wake up from a dream. His wife was not pulling on the rope with him anymore. Oh yes, once for a moment she would have the strength to do it with her husband and children, but more often than not, she started sitting in the big box they could not remove from the sled. The whole family was pulling together, but their  power seemed to be waning. The hills seemed steeper, and the ride down was shorter. A moment arrived where the man and the children could no longer pull their sled anymore. The path through was uncertain, the load too heavy. The man would pull, and pull, and he could not move it anymore. The woman was sad, the children were crying and worried about their father. The man was worried about everyone. He was full of despair. Just when he was about to give up hope, he heard voices coming from far away. Who were these people and their sleds? One person came up to the family and told them that their sled was far to heavy for them. They must let others help pull it from this day forward. The man felt his insides burst. He felt defeated by the big  box on the sled. He missed his wife pulling with him. He hated to see his children explain about the box, and all the things they had to do to help. The person who had talked to him reached down and tied the sleds together. All in all, there were a large group now coming over the hill to help. They tied their sleds together, and when the person said to pull, they all pulled. The sled started moving. They made it to the crest of the hill where others stood by. They walked over to the mans sled and  picked up the box that would not leave. But they took his wife too. Now she would ride on their sled. The man had no choice, he said ok. From this day on, you have the rope for our sled. We will still be there to steer, and curse the big box. The man reached over and told the family, we have to pull together, by ourselves,we cannot go forward. The man and the children are still on their journey, and daily they find others with their sleds. So many sleds. Too many boxes."

january 1, 2014


2013 is over! does it make a difference? when i woke up this morning many of the same issues that we faced in 2013 are still there, so, why do we make such a big deal when the end of one year occurs and the new year begins? in my younger days i remember feeling that each new year would be special. i would set goals that would probably take an entire year to reach and would imagine the joyful feeling when it was accomplished. i saw the big picture i wanted to reach but never imagined all the little steps it took to get there.  before life with all of its detours, roller coasters and devastation became my reality i saw nothing but wonderful possibilities!

so what happened? when did i stop noticing all the wonderful possibilities, the joy in life. well, life itself happened and being the human that i am i lost sight of all the wonderful, joyful moments that god has put before me. joyful moments? when dave continues to progress with his alzheimer's there can be joyful moments?

yes!

the joyful moments don't really have to be my joyful moments. someone else can experience the joy and i can be joyful with them! how many times did i miss that? probably too many times. but, i can tell of one time that i think about almost daily, almost every time i look at dave. i don't mean because i love him so it is because i remember that he told me one day that God speaks to him, he hears Christ talking to him! in all the chaos that he experiences every single day with alzheimer's he hears the voice of God in his ear! i can only imagine when i look at dave and i can sometimes see the blank look in his eyes, the confusion on his face, the determination to find his words that all that while God is speaking to him. is that why he is not frightened by the hallucinations he has because he feels the comfort of God with him, is God whispering to him that he is safe? when he looks at me and i can tell he has no clue who i am but yet i see no fear in him is it because God is speaking to him telling him do not fear for i am with you? i don't know, i can only hope so.

so, 2014 is here. how is this year going to be any different? dave will of course continue the downward spiral that is alzheimer's and i will continue to lose the love of my life and have moments or days of sadness,frustration, exhaustion, and anger. and i will even have times of envy and jealousy of others who can continue on the life journey they planned with their loved one. but, i will have moments of joy, pride and wonderment! this is the year that gabriella graduates and starts on her new journey of life!

when a new year starts it is the time mark everyone uses to set new goals/resolutions. its a time when we reflect on the past and make promises to ourselves that the new year will be better. it all sounds so clean and wonderful but of course we all chuckle a couple weeks into the year when we have "forgotten" about the resolution to lose weight, quit smoking, exercise more, learn to cook, be a better housekeeper, etc. what if we just follow the advise given in AA or NA...one day at a time!

each and every day is a new beginning. for me each and everyday is different, i have no clue what to expect with this alzheimer's journey except that there is usually a decline in some way, sometimes small and sometimes big. setting a goal to reach at the end of the year i am not sure i can do so i am setting a daily goal/resolution....find the joy. i believe that i stated some time at the beginning of this journey that i was going to find the joy in the situation but i am not sure i did a good job of that. so i am starting again and i think i have a plan to help me with that goal.

first, i have a jar that i will fill everyday with a piece of paper that i have written something that occurred that day that would be considered a joyful moment. i know there has to be joy in here some where, surely god would not have us going down this path without showing us his glory and joy, i just need to keep my heart open for those moments and capture them.

second, i am asking for you, to anyone who is still reading this blog to hold me accountable. if you are visiting us or see us out remind me or ask about a joyful moment.  some days i know will be very hard and you may have to point out the moment and i will graciously try to see it too.

so there. my 2014 will for sure have lots of downer days but my plan is to look for joy instead.  will you join me, will you help me get through this journey with joy?

monica