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!!