Tired, emotional and lost.

This has been a hard week.  Not only was there a time change this past weekend but also a change in Dave.  I am not sure why some days the progression of this disease is more evident than others.  Sometimes I am not sure if what I see is true or not and I am constantly asking Gabriella during the course of the evening if she notices the same things I do.  


For those of you who have been in our home you will understand my weariness when I say that I am very concerned because Dave lost his way to the laundry room. For others, our house is very small and its a straight shot from the living room to the kitchen then straight through to the laundry room.  There is no turning down a hallway or going down steps just straight through but he kept turning to go into the room we have deemed "the computer room" and would just stand there not sure what to do.  (As I have said in previous post, if Dave is interested in doing something he does it, anything that will keep his mind going and for him to feel that he is contributing to the upkeep of the house.) He didn't just do it once but a few times! Most of the time I find a gentle way to point him in the right direction but I was trying to get other things done and became frustrated. I didn't say anything hurtful, at least I don't think I did, but instead just came right out and said, "the laundry room is through the kitchen" and pointed to where he needed to go. I didn't have an "attitude" when I said it but said it in a flat tone. I was so tired that day but I know that is not an excuse.  

On another day we ran errands and picked up some much needed items at the store. Of course our Target store is rearranging itself to make room for the new produce section so I was just as lost as Dave. I am sure he felt a little bewildered because I am usually the leader and he follows but we were both lost! Anyway when we got home Dave wanted to shave (I think we had some place to be that evening) so he took his new razors into the bathroom then came right back out because he couldn't find the shaving cream. Of course it was in the spot it is always in but he forgot and then he couldn't find the new can we bought. It makes me sad to remember this.


On Sunday Dave was too tired to get up and go to church so he stayed home and Gabriella and I left. I figured he would sleep the entire time we were gone and was surprised to find him up when we got home.  To my dismay he looked terrible! He knew we had gone to church because I woke him up to tell him bye but he looked disoriented or confused. He said he had gotten up just a little before we got home and he tried turning on the tv but couldn't get it to work. He did turn it on but had changed the channel on the wrong remote and turned off the channel that we need the tv on to get the signal and he couldn't figure out how to turn it back so he turned the tv off and just sat on the couch waiting for us to get home. It was easily fixed but still it makes him frustrated with himself. 


What an emotional roller coaster we are on!  The worse part is that Dave knows when he forgets. He says its like a wave that ebbs and flows and he can't do anything to stop it. One thing I noticed when we were shopping was that his hands were really sweaty-I know, that sounds yukky. Dave and I used to hold hands all the time when we went places but when we shop we usually have a shopping cart so I don't usually hold his hand. That has changed and we are holding hands again but mainly so I can guide him through the store without it looking like I am guiding him. I asked if he was feeling okay because his hands were sweaty and he said he was okay, "I know they're sweaty but I don't know why. I don't think I am feeling anything!" Hmmm. Hope that doesn't mean he is losing the ability to identify what he is feeling. 

We spent the best part of the day on  Monday talking about these incidents and others and cried. He said he worries about me and my future and I worry about making life easier for him. I spend a lot of time trying to figure out ways to revamp our house to make things easy. We I have a lot of work to do!


You know that I have stated that I am trying to look for the joy in our journey because it is so easy to always focus on the down side. I don't want to end on such a sad note so I am going to list some things that I am so grateful Dave can continue to do.

1. We can still hold meaningful conversations, we continue to discuss things that need to be done around the house, family issues, and make simple plans.
2. We can still watch simple plotted movies together.
3. Dave continues to still pick out his own clothing. (I have stated that only because we recently had someone ask if he could still dress himself.)
4. He still gets enjoyment from working in the yard! He can continue to plan the gardening - it may end up being in containers but he can still do it!
5.  He knows my name and who I am!

The list can be longer but I don't want it to sound like I am talking about a child because I am not but I am talking about someone with Alzheimer's and things are more simplistic now and we find victory in every small step!

Monica

Alzheimer's Association and how we are doing.

I thought it was probably time to let everyone know how things are going with us. Dave is still taking the last medication the doctor put him on but he is on a very, very low dose one time per day. When we increased it to two times a day as recommended Dave experienced side effects he just couldn't get over so we went back to one time per day.  After reading information from different sites and asking questions it appears this may be the last medication to try.  We pray that this will be enough.

So, how is he doing? Well, since I have nothing to compare his progress by I couldn't say for sure.  I can tell you more of our observations.  I do notice more and more times when he forgets words and has a hard time recalling them.  I can see the struggle on his face, but like any couple who has been together for any length of time I fill in the words and can pretty much respond. I know that he has been talking to some of you on the phone and you may not notice the struggle but we do some prepping before he calls, i.e., I remind him the name of who is calling and the purpose of the call and he can usually carry on from there.  I do have to say if you are calling about something important please send me an email or text so I can write it down and remind him later because he can't always recall your conversation after he gets off the phone.  Dave is not really a phone conversation type person and although he wants to know how you are doing he will not pick up the phone just to say hi especially now when the words are hard to come by so please do not be upset if he does not call to chat, but do know he thinks of everyone often.

When Dave is tired his symptoms are more noticeable.  He forgets where things are (I know that sounds silly because he forgets anyway but it is much worse), drops his conversation in mid-sentence and just can't concentrate.  He continues to do some "art" although he has moved from his painting to coloring. He has gray scale pictures that need color and he works on those periodically. He still doesn't have much motivation to work on things around the house but I think its because he can't remember how to do it.  I worry about him when he climbs the ladder to check the gutters-it has been so windy here and with so many trees our gutters fill quickly, and I worry about what we will do when he can longer do this (I have a fear of  climbing ladders).  We need to scale down to one remote control because when he is tired he forgets which remote does what (we have an old tv so we have one of those boxes that converts the signal so we have a remote for the box and a remote for the tv and then one for the dvd player!) He has totally given up driving, even the short distance driving he was doing.  He naps a lot now too something he never did.

I think we are both bored and finding things to keep him motivated/busy is harder than I thought.  He did come with me when it was our Care Groups time to serve dinner at Kids Club, he appeared a little lost but then busied himself keeping the trash emptied and cleaning up a bit. No one cared and I was glad to have him with me.  I do have to say that he has gotten much better at telling me he can't remember. Of course there are still plenty of things he continues to do-he says he doesn't always feel he should be cooking so he does the dishes, laundry,vacuums, and continues to take care of the cat.  I have to say that I need some motivation also-I miss the way we used to keep each other going. You know how it is when one is weak the other is strong, now its a little lopsided and I become less and less motivated to get things done....we have a long list of things around the house that needs attention. It's not as much fun doing it alone. All I can say is I can't wait for spring when he can be outdoors and busy himself with yard work because he has said that being outside really clears his mind up and he can think much clearer! 

One of the things that I did get accomplished was contacting the Alzheimer's Assoc. I am so happy that I did! We are involved in a program called L.E.A.R.N.. The acronym stands for Listen, Educate, Adjust, Resolve and Navigate. We meet with a care consultant who will help us with any community support there is and she will also meet with the family to answer questions and educate on what to expect. (By family I mean our kids or other family members.) I firmly believe that the more educated you are the less fearful things seem and it would be good to learn how more advance the medical field has come in the treatment of Alzheimer's. Also I think it is important for the family because of the family medical history. The Association also has a program called Memories in the Making-it is a painting "class" held at the Spiva art center. They have a local artist and someone from the Alzheimer's Assoc there to teach and guide the participants with painting. Some of the paintings done are auctioned or sold to raise monies for the association. Dave has been once (he will miss the next one due to a dr. appt.) and enjoyed it!

There is also an Early Stage Education and Support Classes to be held on Thursdays starting April 5 until May 10th. There will be different professionals facilitating the various classes offering support and education. This is open to anyone who is involved with a loved one who has dementia/Alzheimer's. These classes include the "patient" as well so Dave and I can go together and meet other people in our situation! I am also looking forward to a Caregiver conference to be held April 20th. They will be talking about research and treatments, 10 warning signs and legal and financial matters! I may have information overload by the end of April but I am still looking forward to it all. If you are interested in knowing any information go to www.alz.org.

That's it for now - leaving you with some pics from our last walk at wildcat park, it was windy a little chilly but we needed to get out!

self portrait.

we did not do the graffiti. dave just thought it would be funny to look like he was saying "you're amazing".

Together!