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 

 

 

waking up on the wrong side of the bed

We have all heard the phrase or used it as an explanation of why we are in a bad mood and we usually  give little thought in how it effects others or we try to stay as far away from people as we can. 

So what do you do when you are a full time caregiver and you wake up on the wrong side of the bed?

Well, don't follow my lead. Unfortunately there is no place to hide when you have someone else depending on you.  Do they understand that you just woke up in a bad mood? No, they usually think they are the reason for such a nasty attitude.  Are they? Not really. So what is the reason for waking up in such a bad mood? Who knows!!

I could guess that it has something to do with everyday being the same....routine is a great stress reducer for someone with Alzheimer's but it can be a wowzer doozy of a problem for caregivers, well at least for this caregiver. I could guess that it could be because this is Gabriella's next to last summer with us and all the plans we had for spending time with her and going places cannot be met. It could be that the simple task of going to the mall to walk around, or "window" shopping at target, Wal-Mart and my most favorite place Hobby Lobby can be over whelming and too much stimulation for Dave and if we do go he sleeps the rest of the day and goes to bed early just to recuperate. That is secondary to the fact that walking for any length of time is difficult. It could be that this time of year just reminds me how vacations are out of the question...I envy others who can go places without a second thought on how it will affect another person, and I envy other caregivers with loved ones who have Alzheimer's who can still travel.

It could be that the reality of my world with leaky faucets, clogged drains, an overstuffed garage, that I never seem to have time to clean out, a bathroom that desperately needs a new shower, a yard that I would prefer to mow and not rely on a lawn service to take of desperately needs to be mowed, tires that need air in them which I hate to do because I am not sure I ever put enough in, and Gabriella's car that still needs the air conditioner fixed occupies the part of my brain that isn't consumed with the care of not only Dave with Alzheimer's but an 18 year old daughter that I am trying to prepare for her last year of high school and moving on to college.  The realty of my world where I have made Gabriella cry more than I have ever seen her cry in all her childhood and a husband who sits quietly sometimes with awareness and sometimes without looks at me with dismay. I think the reality of all that crashes in in the depth of my subconscious while I am trying to finally get some rest and the result is "waking up in the wrong side of the bed".

So what do you do to relieve that bad mood? Well, once again don't follow my lead because I too often give in to it and make everyone else around me miserable. What would I like to do about it? Well in my fantasy world I would call a sister, or a son/daughter and ask for them to either come over and relieve me of my task for the entire day or ask if I could drop Dave off at their home for the entire day and stay home all alone!! I would sit with a glass of tea do Gabriella's scrapbook, watch a weepy movie, sit in the backyard, eat lots of ice cream, who knows because there would be so many things I would like to do I would have a hard time picking just one. 

So what do I really do to get rid of my mood. I usually warn Dave and Gabriella that I feel crabby and they give me some space and then about an hour or so later I am fine. This time around I read them my post and we sat around and talked and we all tried to come to an understanding. I don't want to be a crabby caregiver/mom/wife. I want to acknowledge that I have bad days without feeling guilty nor having everyone else feel that they caused my mood in some manner and I definitely don't want my moods to have an affect on Dave. His moods and feelings are so dependent on how I am doing.


Have you read the book If you give a Mouse a Cookie? 

"if you give a mouse a cookie, he's going to ask for a glass of milk.

 if you give him the milk he will probably ask you for a straw"....  

If I was smart I would use that energy to clean out my over stuffed garage but then I would be like that mouse because then I would need boxes to put stuff in, then I would need a trash bag, then I would need to sweep, then I would need...... that is how life is here in our house. That is how waking up on the wrong side of the bed can be, it can lead to many things that never get accomplished except hurt feelings or it could lead to helping each other cope with over tired emotions. Unfortunately, my crabby mood never leads to a cleaned out garage, fixed leaks, aired up tires etc. those things will have to wait for that magical handy man that will one day knock on my front door with tools in hand saying "I am here to fix all your household problems!"

So how do you balance caregiving with the reality of the rest of your life? I don't know. I probably will never know the proper balance because just as I think I have the answer something new will happen and the balance will be thrown off again. I just know that I will have to accept those bad crabby moods with the good days and pray that the good days out number the bad ones. Another way to balance those days would be to actually call someone for help but have you ever been a fulltime caregiver?  Just the thought of having to figure out who to call for which task is just that, another task to add to the long list of task. So I am saying here and now, don't wait for me, or any caregiver to call you. Instead, pick up the phone and say "I will be there tomorrow to clean your house, do your laundry, go to the grocery store, bring you lunch and chat with you, etc." you fill in the blank.

Monica

The Flip Side

Okay, so in the last post I wrote about what type of response you could get if you asked how Dave was doing. Well, there is a flip side to that answer as well.

I say many times that Dave is still Dave, but a modified Dave.  There are plenty of things that he can no longer do because his brain cannot make the connections. Remember, Alzheimer's is a disease of the brain.  There are still plenty of things he can still do.

Around the house he continues to be the sole caretaker of the cat. Not long after we got Sophia he decided he would take care of the litter box and feeding her, he continues to do that without any problems. He is still the one that I call on to hold her while I put her monthly flea medication on. As I said before he can still set the table, do the dishes (we have no dishwasher), runs the vacuum cleaner. He continues to help with folding and putting away the laundry. Our big vegetable garden is a thing of the past but we still plant flowers and make sure the beds are weeded.

"DAD!" or "DAVE!" is still yelled across the house when we have a creepy bug or spiders that need to be killed. When Sophia brought in the tail of a lizard she thought she caught and a poor baby bunny he was the one we called on to get rid of them both.  He may not be the spiritual leader to our family as he once was but he still prays for his family and friends.


We still make important family decisions together like any other couple. It may take more explaining to him and a little longer to make a final decision but we are still a couple together.

You see, he is still Dave.

 I have had people ask specifically about certain aspects of Dave's progression, like is he aware of what is going on, can he remember who you are etc.. I don't mind those questions because they are specific and we have no problem answering those kind of questions and it at least gives us the feeling that the person asking has some knowledge of the disease.

When asking how someone is that has Alzheimer's it is not the same as asking how someone is that has Cancer, the flu, or who has had surgery. Usually the answer is more positive....the treatments are going well, their hair is growing back, the fever is gone, the surgery took care of the problem, but with Alzheimer's the answer that is given depends on the day the hour and sometimes that very moment.

I always tell Dave what I am writing about and ask him if he has anything to say or add and he usually says "No, you did a good job at explaining things."  This time he actually had this to say:
                                               
                        "I find this stage the hardest. I know that I can't remember things
                         and when I see you doing things I keep thinking I should be able
                         to do that but yet I can't remember how to do it. I know  some
                        people are uncomfortable talking to me and I wish I could make them
                        understand that they shouldn't be embarrassed, I want to make them
                       comfortable. I hate when we are out and people talk around me like I am
                       not even there. I am still aware enough to know that we no longer get visitors
                       or phone calls and I know people don't believe you when you tell them I don't
                       do well in crowds, its hard to understand people talking all at once, I can only
                       keep one thought in my head at a time. I hate to say that I get scared to be out
                       when it is late because when I am tired I have a hard time with things. I almost
                       can't wait until I become totally unaware of my surroundings because then it won't
                       hurt as much to know certain people (dave was specific but due to the personal
                       nature of our conversation I will not give names) have walked away and I am
                       not totally sure why. I hate knowing that I don't know things and I have no interest
                       in the things I used to do. This is not how things were supposed to be."
              
Things are different now. We had plans and dreams that will no longer be accomplished but we still have years ahead of us to enjoy each other and family. The man that I married who enjoyed gardening, hunting, camping, fishing and barbecues and had a quick wit may not be the same man sitting next to me now but I can look in his eyes and still see that deep down inside Dave is still there and continues to be active as best he can be. 

Monica

"How is Dave doing?"

Almost from the beginning of this journey "How is Dave doing?" has always been the start of every conversation.  The problem is not being sure how to answer. Asking how someone is, on the most part, seems to just be part of a greeting, "Hi! How ya doing?". Do you really want to know? How much do you really want to know? Do I tell you how I'm really doing or do I just give the answer that makes most people comfortable, "I'm good/fine/okay".

I have that same dilemma when I am asked about Dave. The funny thing is that we have become so accustomed now of how he is doing that I forget other people have no clue how much he has progressed. Besides if I give the answer I would like to give (which would be the honest truth about how he is doing) I am either given a blank stare, or get the response of "Oh I am sorry!" then they look at me so sad.  Please don't get me wrong, I am sure that I have given that response to people before and I am not trying to embarrass you if you have given that response to me or to someone else but you just need to prepare yourself for the answer you will be getting when you ask how someone is doing because the truth is not always comfortable.

So the question is, "How is Dave doing?"  Here is my answer. He is still Dave but he is progressing with the Alzheimer's. I have no clue what stage he would be classified in because if you were to just sit and talk with him you would only notice that sometimes he forgets a word or has become pretty good at word substitution and if you are tuned in and really paying attention you will know what he is really trying to say, you will presume that he is still early stage and doing well. The reality is this, he has no clue most of the time where the bathroom, the kitchen, the bedroom or the laundry room are. He stands in the middle of the kitchen looking around because he can't remember that the trash can is where it has always been for the last 5 years or more. He has forgotten what you do in the shower...he knows about hygiene but he can't remember the steps it takes to get the showering done.  He is unsteady on his feet sometimes and when he is tired he walks with deliberation because his brain can't always make the connection. He has forgotten how to end a prayer, he has forgotten my name on many occasions along with Gabriella's name. When he does remember Gabriella's name he is unable to pronounce all the syllables, so he asked her a week or so ago if he could call her "Gabby" because he can't pronounce her name. She said yes of course (she is not fond of the name so please do not call her that).  He can't remember the cat's name, Sophia, and has a hard time pronouncing her name as well and can't get out the words, "kitty,kitty".

He was having nightmares and was fearful of going to sleep. I prayed and asked our prayer warriors to pray for Dave. I asked for Dave to have his mind filled with pleasant memories, for God to lay his healing hand on him and give him comfort. Praises to God because our prayers are answered. He is no longer having anxiety about going to sleep nor does he wake up already anxious because of the dreams he can't always remember.  We give thanks to the Lord every night for giving us another day together.

We have hired someone to do our lawn care. This was bittersweet because it was one of Dave's favorite things to do but the last time we did the mowing he had a hard time recovering and we even took turns. I hate when I feel as though I have taken something away from him that is part of who he is, especially when I know he is not ready. We talked about it and I finally said that I would rather pay someone to do it and keep him safe and healthy then to continue to have him help me and end up tired and confused for days afterwards, he relented but I still felt horrible. I remind him that there are still plenty of yard things we can do but we just need to modify how it is done, now if only the weather would cooperate!

He continues to do the dishes! He sets the table but you have to tell him what is needed and sometimes you have to just give him the dishes because he can't remember where to find them. 

I can no longer leave him alone which means I no longer attend church services. That is the most heartbreaking for me because without being spiritually fed and enjoying fellowship with other believers I can sometimes feel lost and lonely.  But don't feel sad for us. I cherish every day we have together because I still have Dave. Although today was a challenge because I am extra tired from our trip to Kansas City for our family Memorial Day picnic.  There are so many articles around telling you, as a caregiver, how to make traveling easy on the Alzheimer's patient but I think the trips are harder on the caregiver! I am just not sure I will do the trip again, it was exhausting! We are still out of sorts today and I am trying really hard to put us back on our routine.

So there you go! I have answered your question "How is Dave doing?" and saved us all an awkward, embarrassing moment. And if I can make a suggestion, the next time you see us out and about its okay to just say "Hey! Its good to see you!" then give us (please include Dave in your greeting because too many people ignore him and it hurts his feelings) a hug, wave or handshake and maybe say "well, i gotta go" or something to that affect. You do not realize how much it makes Dave happy to have someone acknowledge him and say hi when we are out and I am happy to not have to go through a litany of his progression. Of course if you have the time and really want to know how his progression is then ask how we are doing, really, we don't have a problem telling people how things are really going but just remember to be prepared.

Not every day is happy but not every day is sad either but we are always grateful for every day we have together!

Monica

Reflections

It has been a long time since I have written anything, mostly because I feel that we have been in our own little transition.  I cannot speak for Dave but I can say that for me the past month has been filled with a more understanding and acceptance of our reality.

Right now I am reading 3 books, well actually reading two and using one more as a reference.  One of the books is entitled "The 36 hour day" and I use it more as a reference. I started reading it as it was recommended to me by some friends who have just been through this journey with his father and his mom said it was helpful to her.  I am actually reading "Staying afloat in the sea of forgetfulness" and "Creating moments of Joy".  I have to say that my favorite book is the Creating moments of Joy. It has given me the kind of tools that I have been looking for in making this journey not so awful and sad. I remember when Dave received his diagnosis that we were told that Alzheimer's was also called the long good-bye. How awful! Unfortunately, at the time and for awhile after, I truly felt this was the long good-bye. It was so difficult to see that there could be any joy in our lives especially as Dave seemed to be progressing so fast. All I could see were all the ways I was losing him and the rush to get some things (important things) done.  For almost the first year it was so hard to see anything but sad things....Dave's inability to do some everyday small task was so overwhelming!  You get this vision in your head that everything is over and then the reality of how all responsibility is now on your shoulders alone hits you and your head just wants to explode.

It is interesting to me, now, that at the beginning there was a whole Alzheimer's "lingo" that we were bombarded with, with no explanation as to what it meant. Now, as time has progressed I am finally learning what some of this "lingo" means! I feel like there needs to be a special dictionary or reference guide that explains what all the "catch phrases" or "Alzheimer's speak" means. I have heard the term "live in their world" so much but had no real clue what that meant. It reminds me of a movie you're watching that has flashback sequences, do you mean I am to act a certain way, dress a certain way, speak a certain way? What does that mean????  Well, I think that I am getting a handle on that one thanks to the book "Creating moments of Joy".  It is actually very helpful to live in their world as it gives you a clue as to where they are in the sense of progression.  Sometimes Dave will be talking about someone or a memory that has nothing to do with the day, or even this year. I respond now with questions that I feel will encourage him to continue with his memory, which is usually a happy memory, and we get to have a conversation filled with happiness! I like this! The days are long and tiresome but right now they are not so sad and difficult.

We are learning to accept the things that he can no longer do or has difficulty doing. I help him more each day with deciding  what kind of clothing he needs for the day and I now remind him that he just wore that shirt the day before and maybe he should try a different one.  I do more of his personal care....thank you to whoever invented the electric shaver!!! These moments are so intimate and precious to me. I know that as time progresses I will be doing more and more for him but isn't that what love is about anyway!? When I think of the sacrifice that God made in sending His son to us and the sacrifice Jesus made of Himself for us out of love who am I then to see what I will be doing as a burden? It is nothing and only by the grace of God will we get through this.

Don't get me wrong, there are days when I still get really sad and days when I am frustrated and lose my patience.  But those days are fewer and fewer. Living in his world has actually put us living in a world all our own.  I forget there is life different than ours past our front door.  Even with Gabriella still living with us at home and her coming home and telling us about her day and us talking about her future it is still hard to relate to much outside our world.  I am not saying we don't leave our home because we still go out and do things but I feel disconnected from others.  It is very hard to describe what I mean and unless you have been a full-time caregiver you may not understand. I am sure if I worked or had continued with ministries at church I wouldn't feel the same because I would be interacting with people in a way that has nothing to do with Alzheimer's. Now that I think about it, I am sure stay at home moms can understand what I mean when I say that you forget how to relate to the rest of the world.

I do get some respite thanks to my care group, but even during those times when I am away from Dave it doesn't feel the same. Acceptance of  how our life is doesn't mean that I no longer miss him because I do, or that we are no longer fighting this disease, it just means we are concentrating more on the joyful times no matter where Dave is in his mind and I am willingly going to walk this journey with him.  We also continue to encourage Dave to keep doing the task he is capable of doing. As I keep telling him....as long as he can continue to do the dishes I don't care if he can't do anything else! HA!

Every day is the same (routine,routine, routine) yet it is different depending on how clear Dave is. We know that we usually have a small window each day that he has the energy and mindset to go out and do something for fun, and that is okay because we plan accordingly.  Acceptance of anything is a good thing. For me it allows me to see the Dave that is still there,the essence of who he is. He still has funny one liners they just take a little longer to be verbalized and may be a couple subjects behind but he is still Dave. Each day is a trial and error kind of day, some days you have a good idea that seems reasonable and doable (making a vlog-video blog) that turns out to be not such a good thing (Dave not feeling he can talk on camera, people not being able to open the video and my refusal to put the video on YouTube), but that is okay because tomorrow is another day. 

                                                                    Monica


disclaimer: the author of the book "creating moments of joy" does not know who i am nor reads this blog. i have not been compensated for the mention of her book or any books mentioned.

snow day!!

 

 

 

 

 

 

 

 

 

 

 

 

 

trying something new.

Once again we are going to try something new with our blog! There are a couple things, first we are going to change the name of the blog. Not sure yet what it will be so I will keep the same name until we can come up with something that better suits what this blog is supposed to be about.  We are wanting the name to be more positive as I am trying to make a change in my attitude about Alzheimer's and focus more on the joyful, happier times I hope to establish instead of the usual sad feelings. This does not mean you won't sometimes read about my frustrations about what is going on but hopefully it will be fewer.

The second change will be the addition of a short video clip of either Dave and I talking or just Dave!  We want him to participate more in the blog. I think there are probably only a couple of post where you got to read what Dave had to "say" about things early on. I really want more input from Dave so you can understand Dave and how things are going and maybe it will be helpful to someone else. (Even if it is only family reading this blog maybe you can pass it on or understand what someone else is going through.)  Any who! here is our first attempt at the video. Sorry it is so dark we did this on a whim next time we will sit at the dining table with better lighting.

 

 

 

 

So there you go.  Not the best but we are new at this so we can only improve right?!  Love to you all!

 

Dave & Monica

Lessons learned and another new wedding ring.

One of the "normal routine" task that Dave has continued to do is making us coffee in the morning and in the evening.  No matter how much earlier I get up than him and even if I am fully capable of making coffee myself I never do.  It is the one thing that Dave feels he can still do for me as my husband and so as long as he doesn't do anything to hurt himself or cause a fire he will continue to make coffee.  Most of the time it is so strong that my cup is only filled half way then I add water to make it more palatable for me and Dave just adds his usual sugar.  So far things have been going pretty well, there were a few times when he may have forgotten to put the coffee filter in the basket and we had coffee all over the place and of course he has forgotten to put the carafe in and once again coffee went all over.  These really are not a big deal, it doesn't take much to wipe up coffee and then make another pot but one day Dave had decided that he wanted more coffee after we had turned the pot off so it had to be reheated in the microwave.  Not a big deal, its something he has done before but I didn't realize the degree of his confusion and instead of pouring the coffee in his mug he put the whole carafe in the microwave!

OH MY GOSH! God was truly watching over us that day! I am so thankful that Dave doesn't ever put anything in the microwave longer than a minute or else we would have had a fire or something more disastrous! I am so thankful that he was not hurt!! I have to say that that is the first time I was really fearful of Dave using an appliance! He has not used the stove or washer since we purchased new ones as they do not look anything like our old ones to him and he is confused when he looks at them-probably another blessing in disguise! So lesson learned-if the coffee pot has been turned off and Dave is wanting more I try to be in the kitchen to make sure he pours his coffee in his mug first!

During the holiday time there was stuff in the back room that needed to be put in the shed. Of course Dave said he would go and put it away because it was cold and he didn't want Gabriella or I going out. I know it only takes a few seconds to unlock the shed and put whatever it was away and come back. Well I felt Dave was taking way too long and since I was in the middle of something I told Gabriella to take a look out the window to check on him.  She said he was fine and she could see him coming out of the shed. Well once again I kept thinking it was taking him a long time so I opened the door to check on him, the shed was locked up and he was walking toward the house then turned around to go back to the shed, when I called out to him he started back to the house and headed for the basement door and when I questioned him he said he needed to check the water in the basement. I had to inform him that it has not rained in a really long time and there would be no water and had him come back into the house.  After sitting on the couch awhile he said, "I think I forgot why I was outside." I said "I think you did too!"  So second lesson learned....go out with Dave when has to go to the shed or the basement. I have also requested he no longer take the trash to the curb on trash day after it has become dark...he has to take it out early. (Taking the trash is the other household task he continues to do to contribute to the care of the house along with doing the dishes since I do the cooking!)

Well, after reading what I just wrote it sounds as if I just let Dave go off on his own all the time but it has only been a little over a year since his diagnosis and I would not have thought that this soon I would have to be watching him so close. As I have said in past post some days he has such clarity that his offer to take something to the shed or reheat his own coffee never triggered a warning to me.  I have said that I want him to continue to be as independent for as long as possible and he still will be I will just need to monitor more closely without doing the task for him.  Even though it has been obvious that Dave is losing more of his words I have felt that he was at a "plateau" so to speak but the past couple of weeks has just shown me that I was wrong and this terrible disease just keeps on marching and that I need to stay on "my toes". 

I know that in one of my past post I have mentioned that Dave has lost A LOT of weight. It may not be noticeable to some but today we went shopping for another new "wedding" band.  This makes the third ring we have bought for him. The first ring he lost shortly after we were married, it is probable in the warehouse he worked at. The second ring he lost in the yard so he said we were not going to replace it with another "real wedding band" so we found one at Romancing the Stone he liked.  On New Years Eve his band fell right off his finger! I mean he was moving his hand and it just fell off!! He said his ring has been very loose for awhile now and that was not the first time it fell off so today we went out and purchased a new one. I had no problem with him not wearing one...I mean I know we are married and everyone we know knows we're married but it really bothered him to not have a ring on his finger! So off to Romancing the Stone again to buy another ring! He decided that it was not the amount of money it cost but what it means so he didn't care where we bought it...so now he has another ring.  Hopefully this one will last a really long time!

The end of 2012 and the start of 2013 have been very interesting and I hope any lessons I need to learn will not be because something scary happened!

Monica

another new year

It is amazing to me that 2012 is gone.  It was a whirlwind of new things in our life. Looking back I can see a huge change in our lives. I am trying very hard to see the glass as half full, usually i am a "half empty" kinda gal and unfortunately Dave can be too.  Man, life can be tough for two "glass half empty" kind of people. I have not made a new year resolution since i was very young because I know that I can't live up to them, so why set myself up?! Okay, so I imagine everyone is thinking "This is different, you're going to make a resolution." Sorry to disappoint you but no, I am not. What I am going to try is to look for the positive in our situation. I will not promise not to get on here and vent because I am sure I will but I will try to keep it down.

Looking back on how things have changed I will say that there are days that I feel that Dave has progressed so much faster than expected.  We still have days when sometimes we can almost forget about the disease because there is so much clarity in Dave. Some days he has such get up and go and I can see him actually enjoying life, but then there are days that sentences are only half finished, he can't find the trash can, laundry room etc and all he wants to do is sit on the couch and watch tv because he is so tired. At the last dr. visit he was given the muscle relaxant for the tremors, muscle stiffness and the body jerks and, unfortunately, one of the side effects is tiredness. This just adds to the already tired feeling Dave has all the time so it is something he fights daily. (There has been improvement in his tremors but only slight improvement in his stiffness when he walks and the body jerks.)  It is hard to get him to want to go when it is so cold outside and dark so early and on top of all that living in a home that is heated with just a floor furnace (which leaves only the living room heated and the rest of the house COLD).  With all the weight Dave has lost it is very hard for him to get and stay warm so why go out in the cold when you are already cold, (Dave's words). Just to get him out of the house once in awhile I can get him to the mall and walk around or sit and people watch, some days it goes well and others he can't walk but maybe a quarter of the way in the mall and then he is ready to go home and take a nap on the couch.

On Christmas day we were invited to Jay St. Clair's (he is the Out Reach Minister at our church) for dinner. It was so nice to get out and enjoy the evening with such a sweet family.  We enjoyed hearing Jay's and Julie's story. We had such a good time! I did mess up by not helping Dave with zipping his coat. It is something we struggle with-do I help him/does he want help, usually when we are out he prefers not to have help, still struggling with pride I guess.  The next day Dave was tired and had more confusion than normal and napped on the couch.

Just last saturday we went to Adam and Michelle's to celebrate Christmas. That was a fun day, taking a drive in the "country" and seeing the granddaughters!! We were there a few hours and I could see that Dave was very tired so home we went and Dave napped and went to bed early and the next day he was really having problems.  Things are different indeed. Now we decide if the activity is worth a couple of days of napping and being tired and increased confusion before we do them. Family is always worth sacrifing for and we do it now because we know one day the only outings will be dr visits.

Even celebrating the start of the new year was different and forever will be.  Last year we were at DeGee and Mark's and this year Dave was in bed early and kept apoligizing for his inability to stay up with Gabriella and I. We knew these days were coming and I guess they are here already.

So what is in store for us in 2013? Well, we will keep monitoring Dave's progress and try to anticipate the changes so we can be prepared. I will continue to find support. There is a facebook "support" site called Memory People. It is a closed group so whatever is posted is only seen by its members. It was started by two people who have been affected by Alzheimer's-one is struggling with the disease and one was the caregiver to his father for many years. It has been the best support and informational site!! I have learned a lot about what to expect and get lots of helpful tips but mostly it is so good to have other people who can understand and identify with our struggles and frustrations, and to know you are not judged and they believe me and give me the courage and support. I know there is a lot of controversy about virtual support and how things are not real but these people are and although there was no way we could attend they had their first convention in New York city and from all the postings it was like one big family reunion! (the group members are from all over the world!)Maybe some day Dave and I can attend.  Since I can't find a support group in town that is informational and positive this group on facebook will have to be my support!

I will also try to learn how to take care of household problems myself. It is hard because Dave wants to help or fix whatever the problem is but he can't remember or can't put into words what I need to do nor can he find the tools I need to complete a project. I know there are people out there who are more than willing to come and help us but I am getting tired of having to ask for help and would like to learn what I need to do....sometimes this makes me sad because Dave and I were looking forward to fixing the house together but now it is just me trying to figure it out but maybe it will be a good lesson for Gabriella, learning to be independent and learn some new skills.  It has crossed our minds that we may just have to give up learning these lessons and move on.

In terms of Gabriella, we will continue to try and prepare her for her next step and hopefully visit more colleges.  When the 2013-2014 school year starts it will be her last year of high school. That is going to be so hard for me but thankfully we have another year to wait!!!!  Never would I have thought that Gabriella growing up would be hard for Dave to accept. More often now when Gabriella goes out on a date Dave is setting a curfew.  We never saw a need to set a curfew on a date that was in the middle of the afternoon and ended when the movie ended! For whatever reason Dave is unable to deal with her growing up, I have no idea what he is thinking, maybe he is has forgotten how old she is getting and that it is time for her to start getting out in the world.

I am just happy that we made it through another year and praying that God will continue to bless us with His grace.

 

Monica