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

christmas

well we made it through christmas! i have to be honest and say that i am so happy that it is over! the days leading up to it were real downers! the weather was cold and cloudy and we had some precipitation which really affected dave's mood. thankfully on dec 23rd the sun was out and the temps were not too unbearable and dave's mood picked up!!! yay!! we finally were able to get some christmas shopping done..... from now on we will shop on-line (i hate shopping on-line because i like to pick things up, feel them and see if they are worth purchasing and you can't always do that with on-line stuff).

although thanksgiving has always been my most favorite holiday there are some parts of christmas i have always enjoyed....the baking,the decorating, and even buying gifts for everyone is fun. this year i was doing the bare minimum. if it wasn't for gabriella making sugar cookies and pretzel rollo bites and stephanie bringing some goodies herself we wouldn't have had any  christmas treats at all. the only decoration was on the front door and of course our rustic eclectic tree.


as i have said numerous times i am trying to keep get togethers very low key.  no fancy sit down christmas dinner for us. instead i made chili and soup. i was actually organized enough to make the chili ahead of time so on christmas day i only had to put it in the crock-pot to stay warm.

i was barely in the spirit. numerous times before the kids came dave was asking who was coming.  he commented the house would be "full".  was he anxious about the gathering or looking forward to it? i have no idea. i do know he was disappointed about some things and we had moments of sadness and tears,but i would redirect him and his mood would improve.

dave actually did well. he participated in some conversation, played with seeley and even said he needed to lay down for awhile when he became overly stimulated and needed a break. opening gifts was a little awkward. i am not sure he understood what was going on. the kids did well with the gifts they gave him.  he received sweat pants, or athletic pants that would be easy to use and becee made him a "fidget" blanket. it was great! the blanket contains items that dave can manipulate when he is feeling anxious. dave doesn't quite understand the concept but as time goes on i think he will get the idea.

christmas was a lot of work. trying to balance the low key atmosphere with the desire to still want to celebrate was too much for me. i am ready to just not celebrate any more. dave remembers enough to know that holiday time means family time and his mood is low because not all family members are here. he understands that some live too far but then he forgets and he will ask if his family will be coming. he is disappointed that not all the kids come and he cries. it is too much for me. trying to keep my sanity, keep the holiday atmosphere and keep dave's mood even is too much to handle.  he doesn't understand that too many people causes him difficulties and i feel like the bad guy to everyone when i have to budget the time and number of people who come and go. but i know the after effects dave goes through so i have to police the get togethers until others understand.

since christmas dave has done a lot of sleeping. we have had a couple of days of 40 degree weather with sunshine so we spent those days walking around the yard and sitting in the sunshine. we had several large branches break off the trees when we had an ice storm and i dragged them to the back of the yard while dave soaked up the sun.

we are almost back to our regular routine. i used to think it was boring doing the same thing everyday but after the holidays i admit there is something comforting in knowing exactly what is going to happen. i truly understand why routine is so important for the alzheimer's  person.







 

 monica

happy holidays ?

well the holiday season is upon us. i would like to say i was prepared and organized and excited, but i am none of those things. i know that everything in our lives has to be modified to accommodate dave,to make him feel part of the celebration yet keep it very low key to prevent an increase in his confusion and anxiety. 

dave & my brother-in-law manuel in 2012

last year we made the trip to kansas city and had fun helping with the preparations but we were just a little slower than the year before. on thanksgiving there was a house full at my sisters but it was so much fun!
 
this year we stayed home and although we had the traditional turkey dinner it consisted of the usual suspects, me, dave and gabriella.  thanksgiving has always been my most favorite holiday. there are no expectations or disappointments,its just food and family time! i thought i planned out the day perfectly, all the food came out deliciously, even dave helped by mashing the potatoes. despite the fact that i had a new pie recipe i wanted to try i bought premade pies for the convenience. matthew and becee and seeley were coming over later in the evening for dessert. low key, low expectations. what i wasn't prepared for - the downward turn dave took.

we were eating dinner and he kept looking at me and smiling, i was so happy that he was having a good time until i realized he had that blank look in his eyes. he was smiling and eating but had no clue what was going on. more specifically, he had no clue who i was. what was my clue? he took hold of my left hand and said "where did you get that?", pointing to my wedding ring. i said, "you gave it to me when we got married."  nothing.  i kept chatting with gabriella, kept eating, kept smiling and laughing all the while i was crying on the inside. my heart sunk lower than i could imagine. i wanted to run, hide and just ball my eyes out, but i was determined to make sure we had a good thanksgiving.

my most favorite holiday has just slipped away. no more to be celebrated. this year has turned out to be the last year we will celebrate thanksgiving. in my head i am screaming "its only been two years!" how quickly this journey we are on is traveling. i wish i could grab the reins and pull back and yell "whoa" but i can pull and yell all i want but that horse has a mind of its own and has taken off down the road at full speed.

i know some people are thinking i am exaggerating, being overly dramatic, but i am not. his memory of who i am has only come back a few times since thanksgiving. instead of going out for black friday like lots of people we were sitting in our pajamas, eyes red and swollen from all the crying looking at wedding pictures. i even found the video that was taken and we watched it but i couldn't tell if any of it was sinking in. later that evening he jumped up and said "my ring. i am missing my ring." (he has not worn a ring since he lost so much weight and it kept falling off.) wow! he came back! but it is short lived.

so now christmas is upon us. we have no tree this year. we have a metal garden tower wrapped with a lighted garland that sits in an old army footlocker. it is very eclectically rustic! it is the only christmas decoration we have. i am afraid to make too many changes. i am afraid of how dave will be. i am not alone in these feelings. there are numerous alzheimer's families that go through this every year and many opt to just not celebrate because any small disruption in the daily routine really causes havoc in the alzheimer's patient. think i am over doing it?

i am trying to make some changes in the alcove to make it easier for dave to find his coats and such but in order to do that i had to get rid of the piano. becee said she wanted it so off to their home it went. dave was here the day matthew and his friends came to move it, ever since dave has been thinking that people are taking our stuff. he thinks i am getting rid of things and leaving him.  it was a small change yet it has caused so much turmoil and anxiety in dave. to keep my sanity this will be the last year we will have christmas and the last year i will decorate. i know i still have kids and a grandson that i should live for but my first priority is dave.

he is my husband, he is the love of my life and no matter if he knows who i am or not i will love him fearlessly to the end.

monica

afterthought: thanksgiving and christmas are not dependent upon turkey & gravy or by a decorated tree so although i say we will not be celebrating the holidays i am saying there will be no decorating. thanksgiving is thanksgiving no matter what you cook, its whats
in our heart that matters, and christmas is the celebration of the birth of our saviour and does not necessitate a decorated tree.

Its a Party x2!

November is almost over, can you believe it! One of the best highlights of the month is celebrating Dave's birthday.  Until he has absolutely no awareness I will be having "casual" parties for him. Last year was a big milestone and all of my sister-in-laws came into town to help celebrate. This year was super casual with Dave picking his favorite soup to eat - chicken tortilla soup - he likes spicy as that is most definitely a flavor he can taste! We also had queso & chips, and a veggie tray. We had also picked up cupcakes from his favorite place. It was a kid/grandkid party on Saturday and those who were able and willing were here. It was fun and not too overwhelming for Dave which was the whole purpose of a casual day.

On his exact birthday date we had our usual Home Group to attend and thanks to Ann Kent for making Dave's favorite - coconut cream pie - we had a mini party that night!!

His birthday not only marked another year together but brought along some changes in Dave.  You know there is never a change that is good with Alzheimer's but those changes we will discuss on another post, as of right now I just want to remember the fun we had celebrating and leave you with pictures of all that fun!

coconut cream pic & lemon cake! and lots of candles!

took a couple tries to blow out so many candles!!

Ann Kent & DeGee Brown 

Thanks to our wonderful Home/Care Group for making Dave feel so special! We are so blessed to have these people in our lives! We love them dearly!

I forgot that i also made pigs in a blanket in case Seeley wasn't interested in soup.

 

becee, dave, gabriella & stephanie

seeley watching a movie!

this was dave's second attempt-the first time seeley blew out the candle. guess pawpaw was taking too long!

 

seely waiting for pawpaw to blow out the candle and eat a cupcake!

Although I requested no presents (Dave just wanted to have the kids over) Linda (my sister) sent down a gift - a nice warm robe!! This is great since our house is so cold - we have a floor furnace and the only truly heated and warm room is the living room, the rest of the rooms are COLD, especially the bathroom. This will keep him warm for sure!

Stephanie remembers how cold it is in the house and gave Dave warm flannel pajamas and some warm wool socks.

                  Hugs! Dave is a little awkward with those on some days, but he still enjoys them!

 

 

 

It was a fun day! I am so thankful for the kids coming and making Dave feel loved and celebrated!

Monica

A season of changes.

I love this time of year! Don't you? For me this time of year is so magical, to see all the different colors those green leaves turn into, wow! The air is crisp and sometimes damp leaving you with a desire to bundle up in a warm sweater go for a walk and be in awe of the changes in nature. Its not just the trees and plants that change but you can even see the animals change, thicker coats, bushier tales etc. 

This is Dave's most favorite time of  year also. We would go for walks and drives just to see the beautiful new colors. That is why we picked October for our wedding. Funny how that worked out, fall is a change of seasons in nature and it was a new season in our lives together.

Fall has seemed to mark lots of changes lately. The loss of my father, and the changes we saw in Dave, and the start of the end of Gabriella's season as a "kid" before graduation.  Fall marks a change in time too, the setting of our time back by one hour. Something so minor can reek havoc in someone with Alzheimer's.  At this time of year most people are making changes in their schedules especially if you have kids. There are school activities, church activities etc.  I really miss some of those changes and wished those simple times were back. 

So I need to make changes around here. With the time change I prepare myself mentally to deal with the changes that are inevitable with Dave. I will go and buy lightbulbs that are super bright to stave off sundowners. With darkness coming sooner in the day than normal we turn on the lights all over the house but they need to be brighter in the fall and winter to keep Dave as even as possible. I am thinking of looking into light therapy and buying a light. When we have sunny days I get him outside.

On occasion I can get him interested in working in the yard but mostly its just long drives. I do what I can to get him to soak up the sun and all its benefits. Sometimes it helps sometimes not. We do have that big picture window and i try to keep the curtains open as long as possible to make the house bright but then I try to shut them and turn on all the bright lights so I can keep that sunny feeling going.

There have been so many changes. You know Alzheimer's does not stop progressing. Many of the issues Dave had at the begining, the shaking and jerking, that were taken care of with medication are now back. His anxiety has increased and some days it is difficult to get him out of bed even with me giving him his anti-anxiety medication before he gets out of bed. 

He continues to lose more names and places. On our way over to Verona to celebrate our granddaughter's birthdays Dave said he had no clue where we were and thought he had never been there. (We have been to Adam's many times.) He could not remember anyone's names. I am not even sure he knew those sweet little girls were his granddaughters. He couldn't remember Adam's name but i could tell by the way he looked at Adam he knew that that was his son.

Dave & Adam

Autumn & Izzy

 Dave did well at the party especially since the day before we were at Matthew & Becee's celebrating Seeley's birthday. 

Seeley

Although Dave had fun that entire weekend it did take its toll on him.  It took almost the entire week to recuperate. I know the parties over stimulated him but I could not get him to leave either party early. By the end of the weekend he was stiff, had a lot of difficulty completing a sentence and just couldn't focus. 

Walking is starting to become more difficult.  It was really evident the week after the birthday parties. A few times Dave said his legs felt weak as though they were going to give out on him.  We tried going back to the Frisco trail for a walk in the sunshine but he was only able to walk a very short distance before his legs became weak and he felt he needed to sit down.

He is having more and more difficulty with his vision. He is not losing his vision but he does not always know which way to look when you point at something you want him to see.  He is not good at looking down so when it was time to leave the birthday parties he had difficulty figuring out how to hug each grandkid because they are little and he was unable to understand looking down, he couldn't figure out how to hug them. 

In our care group we are watching a video for our bible study and we sit on the couch directly across from the tv but Dave does not look at the tv. For some reason he is always looking to the side.  After much investigating I have come to the conclusion that his brain is not making the connection it needs to know where/how to look at the tv.  It is difficult to explain but you can see a look in his eyes and you realize he is lost. 

The difficulties and changes are part of the normal progression of the disease but they are still hard to accept. We modify a lot of our activities so he can participate as much as possible. The most difficult part is finding ways for him to continue to feel useful. I have the tendency to over do for him, i think that is partly because i am dealing with something i cannot fix, I hate to see him struggle.

Someone I know who also has Alzheimer's made the following statement: "you know when you were in school, and it was a subject you had difficulties in and the teacher calls on you for an answer, remember how that felt? that is how i feel everyday all day long."  In other words there is always a feeling of panic, confusion,dread and anxiety. Can you imaging living with those feelings every single day all day long?  And those feelings aren't just about whats going on around him but about himself, he is losing himself to himself.  

I have learned more and more how to live in "Alzheimer's world" with Dave where he is well and happy, but when the real world comes around I can see the change in him and I lose him. Fall is beautiful with all its colors and changes I just wish this horrible disease did not exist so Dave only had to experience these changes in nature and not the ones in himself.

 

                                       Monica

it's not always doom and gloom

Well I received a message from a good friend in response to my last post and at the end she teasingly said "I hope you woke up on the right side of the bed today!" It made me chuckle, then I realized I write more post about the down side of Alzheimer's and i really want to change the vision people have of alzheimer's. Yes it is sad and disheartening to watch a love one slowly lose their abilities but there are still some very good times and memories that are happening.

One of highlights this summer so far was a visit from Anita. She came for an entire week! She would wait to visit in the afternoon so we could continue with our morning routine. It was a great visit! She sat with Dave one evening allowing Gabriella and me to have some long over due time together! While we were gone Anita and Dave sat and talked old memories. It was such a blessing for Dave, he had someone here that remembered his growing up years and all that they experienced. She was his connection to a time I know nothing about. It was his favorite day of the entire week. Anita and I also had a couple hours to spend together, a girls afternoon! We went to get manicures!! The entire visit was enjoyable. I just hope Anita understands what a blessing this visit was for all of us.

On Anita's last day Matthew and his friend Nate spent the day putting in a new kitchen counter!! Yay!! It was a busy day for sure. In the early evening Becee came and we got to play with Seely! It was fun and now I have a nice new counter. There are still some details that still need to be done but it so nice and makes the kitchen look more up to date. I see some painting in our future!!

We also "celebrated" Gabriella's first job!! I never knew there were so many places they did not hire you unless you were 18 and the ones that do,well those doors never opened. We prayed and Gabriella persevered and now she is a working girl!!!

I am glad that although Dave cannot always maintain some memories that he is still aware of the significance of events. He, actually we, are in awe and proud of the growth we have seen in our children.  I am just grateful that Dave still has some awareness of it all.

Monica