Monday, September 19, 2016

Dinner and a Movie

Locally we have a Movie Tavern. This was a new concept for me. The theater has large, plush reclining seats. They are so comfy, you could take a nap! The Movie Tavern provides a nice menu selection of food and beverages. The best way to experience it is to arrive a little early, order from the menu, watch the previews and wait for the movie to start. They bring your food and beverage to you, and if you should need anything else during the movie, you simply press a small button for service. There is a drink holder in the reclining seat and a tray table that swings over your lap to hold your food. I have to say it is quite the experience.

You pay a (large) premium on any food you order. Food quality was pretty good, I'd give it a solid B+. You can order anything from burgers to salmon. We watched the movie Sully. It was great! Very inspiring. Tom Hanks of course, was amazing. At the end of the movie everyone in the audience clapped. It was that kind of movie.

Seats are reserved ahead of time online. I picked two seats with what I thought would be a good vantage point. I noted that there was an empty seat on either side of us. Given the uncertainty of how our lives play out, I thought it would be good to have that extra space as a buffer. I showed Jim the online seating and pointed out our seats, and also mentioned the empty seats on either side of us. He thought that was great.

I should have seen this coming, given that this was such a popular movie. At the last minute, just before the movie started, two women came to our row and asked if we could move down a seat so that they could sit together. Oh no. Jim immediately say "No! we're not moving! These are our seats!" At the exact moment he is saying that I am saying "we don't mind moving down a seat". Jim glares at me. The women say "that's alright, we'll just sit separately, no big deal". As the woman sat next to Jim, he says "you can't sit there! You are not authorized! These seats are supposed to be vacant!"

The woman looked at him in disbelief. She showed him her ticket and at the same time I'm trying to quietly explain to Jim that they purchased these seats. I was so embarrassed. On the way out after the movie, I heard her recounting the experience to her friend. "Can you believe he talked to me that way?"

In the dementia world there is something called the "Oops Card". When something happens in public that is awkward or embarrassing, you surreptitiously hand them an oops card. It explains that the person has dementia etc. I may be close to the point where I need to do something like that.

I went to my Y class this morning. I knew I would be coming home later than usual as I wanted to stop at the grocery store. So I wrote on a piece of paper "Carole will be home at 11:30". While I was gone, by mother called and Jim spoke to her for a few minutes (he actually remembered to tell me this). When I got home, he said he tried to call me to tell me my mom had called, but that he couldn't reach me. My cell phone did not ring while I was gone. Here is how the conversation went:

Me: "What number did you dial when you tried to call me?"

Jim: "xxx-xxxx" (This is our landline)

Me: "No, I don't mean our home phone; what number did you use when you called my cell phone?"

Jim: "xxx-xxxx" (our landline)

Me: "Well, if you need to reach me when I am gone, you need to dial my cell phone number, which is zzz-zzzz"

Jim: "No! I'm not going to do that! I need to be able to dial xxx-xxxx to be able to reach you here!"

By now I am telling myself to just agree, let it go, and move on.

Me:  "OK"

Jim: "A strange old lady answered the phone when I dialed xxx-xxxx" (our land line) 

Me: "Maybe the wires got crossed. Who knows."

Did he confuse talking to my mother with thinking that he had called me, albeit on our landline?

In the future, when I have to leave I will not only write down what time I will return, but also my cell phone number so that he will have that readily available if he needs to call me.

This conversation was one of his most confusing. I'm still not sure exactly what happened while I was gone. It does seem like the confusion is worsening, or at least is more frequent. When I think about the dinner and movie we went to, I should not have set up expectations for a seat on either side of us to be empty. I need to remember that any unexpected change is almost more than he can process and handle.

Oh, it feels so good to be able to write all this down. It really is therapy for me. Thank you dear friends, once again, for listening and caring.

Wednesday, September 14, 2016

Technology Challenges and Changes

I knew that I would be away from home today for a couple of hours, so I encouraged Jim to meet his buddies for the usual Wednesday lunch at a local restaurant. At first he said no, he wasn't interested. I let it go, knowing that if I pushed it he would likely become more resistant. My tactic worked! As I was getting ready to leave the house he announced that he was headed out to lunch with the guys. Hurray!

When I returned home he was pretty unhappy. The restaurant was changed from the usual meeting place. It's possible this was decided the week before and Jim didn't remember. He sat and waited for quite a while and finally decided to just go home when he realized no one was coming.

According to Jim, phone calls were made. Details are sketchy, and in stressful situations I don't press for details. It sounds like his friend tried to call him on his cell phone. In a previous post I wrote about the difficulty we had trying to find a phone that was similar to the one he had before. (His prior cell phone account and phone number were discontinued by the carrier for inactivity.) I believe he had problems today either trying to make a call or taking a call with his cell phone. He was just so upset, it was hard to watch.

So, back to the drawing board. I'll continue to look for another basic phone that will work for him. What makes it challenging is that he insists on a flip phone, he wants it to be no larger than certain dimensions, and no camera.

When his stress level is that high, it is hard for me to be internally calm. I really have to fight myself not to take in the anxiety he is experiencing. Nearly impossible. When he is that upset/anxious, he gets quite loud, expresses his anger, and generally is quite unhappy. I try very hard just to listen, stay calm, and try to put myself in his shoes. I know he is not angry at me, he is angry and frustrated at the situation. But boy, it sure is hard to not internalize all of the negativity, even if it is not directed at me.

This evening he is feeling better and his mood is back to baseline. A little while ago he said "thanks for helping me out and doing all that you do for me." How sweet!

We have an electrician coming on Friday to replace a faulty light switch. I discovered that Jim had taken the plate off with a screwdriver and was looking intently at the wiring. He reminded me that the red wires are "hot". Oh my goodness. It actually was pretty easy to get him to agree to having an electrician come to do this minor repair. For some, this may seem like an easy household repair. But I know NOTHING about electrical, and I certainly didn't want to rely on Jim's memory to do this repair.

We have a list of contractors and workers that we have kept updated over the years. These men and women are worth their weight in gold. It's reassuring to know that good help is available, if needed.

Well, thanks for stopping by and listening to me. I so appreciate each and every one of you!

Tuesday, September 6, 2016

Word Finding; It's a Guessing Game

We had a great birthday party for my mom this past weekend. Lots of good food, laughter and conversation made for a nice celebration. Jim did a great job helping me with what ever I needed. I didn't notice anything amiss during the party. If Jim was confused or said something that was off, I didn't see it.

After everyone left, we cleaned things up together. He was exhausted, I could tell. Evenings and times when he is tired are the hardest for him. About 2 weeks ago he had a couple of his medications changed. For some reason, after everyone left the party he became focused on the meds, saying things that didn't even make sense.

Jim: "What are the three meds?"

Me: "You mean what are the two new medications?"

Jim: "Why do you call them three different words? You're confusing me."

Me: "I'm not calling them different names, I'm using the same names. A couple of weeks ago you started two new medications; they are ____ and ____."

Jim: "There you go again.  Why do you call them three different words?"

At this point, I have no idea what to say. But I attempt to recount the history behind the two new medications and tell him that the names I'm using for the meds are the same names that I have been using for 2 weeks. I even get the bottles to show him.

None of this goes well. He is so confused. And I'm realizing that my attempts to provide clear, logical explanations are not being processed at all. So, I hold his hand, hug him, give him a kiss, and say "we're both tired, and this is hard for both of us to understand. Let's talk about it tomorrow morning when we're both more rested." He accepted that! It was that easy!

I need to remember that my attempts at rational conversation are not always processed well by him. Sometimes it is better to just keep it very simple, or as above, delay the conversation to another time. By the way, the next morning I don't think he remembered any of this conversation. He didn't bring it up, and I certainly didn't!

I usually go to bed about an hour before Jim does. He is more of a night owl, and I am the early bird. The other night when he came in to bed he woke me up to tell me that he couldn't find his glasses. I told him I'd help him find them in the morning. He accepted this and came to bed. The next morning I  said "last night you said you lost your glasses. Do you want me to help you look for them?"

Jim: "I said that?"

Me: "Yes, and I can help you look for them."

Jim: "Was I asleep when I said that?" "Were you dreaming?"

Me: "Look! Here are your glasses!"

The problem with word finding continues, and actually occurs many times a day now. This is definitely an increase from 6 months ago. It is mainly nouns, which sometimes makes it hard to figure out what he is talking about. I usually ask a bunch of questions so I can key in on what he is talking about. Fortunately he is frequently talking about something we have discussed within the last few hours, so I can usually figure it out.

Jim: "Where do you find the thing on the ..........(long pause)"

Me: "Are you talking about your car?"

Jim: " know..... the thing........" (puts hands to his head in frustration)

Me: "Are you talking about your Kindle?"

Jim: "Yes! Where is the thing on my Kindle?"

From there I was able to figure out he was looking for the volume control button. How frustrating it must be for him not to be able to articulate what he wants to say. I've gotten pretty good at guessing what he needs to say.

Sometimes I visualize his brain as full of cobwebs (plaques and tangles are the medical terms) covering all this valuable matter. If only we could brush away those cobwebs!

I read this great article that you can read here that essentially discusses the issue of "would you rather be right, or would you rather have peace". The answer is pretty easy for me. The author is Marie Marley who has written about Alzheimers based on her experiences with her husband. I might read one of her books. I say might, because I'm not sure if it would be sad, or if it would give me hope, or maybe something in-between.

I've got a great week ahead. I'm having lunch with a very dear friend of mine tomorrow. Thursday is "mom day" (groceries, errands etc), Friday is lunch with a very good friend of mine who is still working. Add in my usual YMCA classes, and I am a happy camper. Jim does best if I'm not away for a long period of time. All of these activities are within a time frame where he should be fine by himself. It's great to have these things to look forward to!

Well, thanks again dear readers for checking in with me and reading my words. As I type, I hear myself talking and smiling, knowing that very kind and thoughtful folks are listening. Until next time...

Wednesday, August 31, 2016

I couldn't find you!

Jim loves to keep our yard in perfect shape. He mows with our garden tractor on a regular basis, cutting it high so that the grass stays nice and green. I've mentioned in past posts that for some of the outdoor work I have needed to get involved. It has given me a new appreciation for all that he has done over the years to keep our property looking so nice.

We had some new plantings placed recently (long story for perhaps another post; I definitely did not want additional flowers/bushes to have to take care of). The new plantings need frequent watering. Given the drought like conditions, we've been watering almost daily for the last couple of weeks. We're going to back off to every other day. I really need to be out there helping, as he is not able to keep track of what has been watered. Yesterday when I said "don't forget to water the third hydrangea plant", he insisted he already had and then said incredulously "are you saying you don't believe me?" Fortunately I was able to suggest we both check the soil around the plant, and this convinced him it needed to be watered.

Yesterday I headed outside to wash windows along the back side of our house. Jim was headed into the shower, but helped me to get set up with step stool, squeegee etc.  He offered to help, but honestly, sometimes it is just easier for me to do it myself. The compulsion to get everything perfect can drive me crazy. It ends up being quicker and easier to just do it myself.

I was on the next to the last window and I heard his voice calling out to me "Carole! Carole!". He was just rounding the corner from the front of the house. He said "I couldn't find you!!!" I reminded him that he had help to set me up to wash the outside windows, and that I had been outside ever since then. (I felt the need to tell him this so he wouldn't think that I had gone outside without telling him first.)

Jim: "But I couldn't find you! I didn't know where you were! I looked all over. I even looked in your purse!" (???)

Me: "I'm so sorry you couldn't find me. But the good news is that the windows are done and they look great."

Jim: "I just didn't know what to do."

He was OK and calmed down pretty quickly.  Just another reminder to me that the short term memory is not great. When I remind him of things he has forgotten, he'll say something like "oh, yeah", but I'm never certain if he actually remembers, or if he is just going along with what I say.

He has an old style flip phone that he has used for several years. He keeps it in his car all the time. He rarely uses it. We have a land line that I'd love to get rid of, but the land line is what he is accustomed to. We received notice that his old flip phone would no longer work after 12/31. It was a 2G, so we needed to get him a new phone. To make matters worse, because his phone had not been used in 3 months, they deactivated his account and gave his number away!

 We went to Walmart and a very helpful sales person assisted us in finding another flip phone that will work just fine. It is pretty similar to his old one,  which was VERY important in terms of transitioning to this new phone. One problem: it has a button on the side that activates the camera (which he would never use). The positioning of this button makes it easy to accidentally turn on the camera. Once the camera is on, you have to hit the END button to turn the camera off. He will likely never remember that, and I fear it may be a source of frustration for him. I've googled to see if you can deactivate the camera, but so far no luck. We'll see. We've got 2 weeks to return it if we're not happy with it.

We've got my mom's birthday bash this weekend. I'm playing it smart. Lot's of prepared food. Very little food preparation on my part. Costco's chicken alfredo pasta, mac and cheese, spiral ham, cooked turkey breast from Costco that I just have to slice, tossed salad, Japanese cole slaw (that I will make - delicious!), Wegmans loaded potato salad, Wegmans birthday cake, ice cream, and Costco's wonderful chocolate chip cookies. No one will go hungry :-)

Every day I am thankful that I retired when I did. My posts, of course, highlight my observations of Jim's changes. I don't often mention all the fun, happy and silly times that we still have. There are plenty of those times too! And many more to come, I am sure.

It means a lot to me to be able to write these words, and to have such caring compassionate readers who stop by to listen to my story. Thanks for stopping by!

Saturday, August 20, 2016

Mathematical Calculations

This is a picture I took last week after a heavy overnight thunderstorm. You can see the morning sun peeking through the trees. We've had an unusually  hot and dry summer, so any rain is so appreciated. 

This is the weekend we had planned to travel to Philadelphia for a wedding. It was not to be. Jim is not feeling well. It's complicated, and hard even for me to describe. This is one of those times where his difficulty with word finding becomes especially significant. Based on my observations and on what I can gather from his efforts to describe what he is feeling, I think part of the problem may be some dehydration. The extreme heat we have had, along with his compulsion to keep the yard perfect have likely led to the perfect storm of some heat exhaustion and not enough fluids. 

We've discussed how many glasses of water he should drink a day. But tracking it is the kicker. There now is a pad and pencil with a chart to check off each glass he drinks. However he could drink a glass of water, be looking at the chart, and still not remember (process?) that he needs to make a check mark! So, I'm on high alert, at least for a few more days, to try to keep track of how much he is drinking. The good news is that he has a new awareness of the need to drink more, so I'm hoping after a few days this will become more routine for him and actually counting/recording will no longer be necessary.

If he is not back to baseline by Monday, he is in agreement to go see his doctor. And he has agreed and wants(!) me to go with him. Meanwhile, we'll focus on more fluids and more rest. 

This morning we were discussing the ages of our niece and her husband. Here's how the conversation went.

Jim: "He's quite a bit older than she is."

  (Looking back, at this point I should have just nodded my head and said "uh-huh". I mean, what is the point? Who cares? But I was not running this through my usual high alert caregiver filter.)

Me: "Well, it's actually a 2 year difference; she is 24 and he is 26"

Jim: "No! It's 10 years difference!"

Me: "Well, she is 24 and he is 26.  26 minus 24 is 2, so it is a 2 year difference."

Jim: "No, no, no! That is a 10 year difference!"

Me: Thinking he just needs to visualize this I write on a piece of paper :   26

Jim:" 4 plus 6 is 10! It is a 10 year difference!"

At this point I realize that I have done exactly what I should not have done. Every time I think I am getting good at just going with the flow, my exacting personality manages to rear its ugly head. 

When Jim was doing his graduate work I'll never forget when he came home and told me he had just registered for the most advanced statistics course that the university offered. He excelled academically.  He always had an intellectual curiosity that spanned a lot of different topics. He was a voracious reader. He still buys books for his Kindle, but I notice that he seldom finishes any of the books that he starts. I'm guessing that he is having trouble processing and understanding all of what he is reading. And he is likely having trouble remembering what he has just read. 

It is becoming increasingly clear to me that he has NO idea that is is cognitively impaired. From what I have read, that is a common finding in dementia. Some people know and are very aware, but many do not. I suppose that it is a gift to him, to not be aware of his loss. I can only imagine how devastating it would be for him to discover what is happening to his brain. 

We always have a birthday party at our house in September for my mom. Almost everyone is able to come, which means about 30 -35 family members. When I think of last year's party, it makes me realize how much Jim has changed since last year. We'll see people that we only see once or twice a year, so it will be interesting to see if others notice.

So, with my caregiver filter back in place, the rest of the day is going well. I think we'll head out for some ice cream; that certainly counts as fluids :-) Hope you are enjoying this beautiful summer day. Thanks for stopping by. 

Friday, August 12, 2016

"That Was a Close Call"

Jim and I are headed to Philadelphia next weekend for a wedding. We are very fond of this dear young couple and are looking forward to this very special event. Previously I wrote about our experience of buying a new suit for Jim. He planned on wearing a white shirt that he had purchased a couple of years ago. It fit well and was still in style.

Today he discovered a discoloration near the collar. My vision is perfect, but I honestly could not see what he was talking about. But once he is convinced, it is very difficult to get him going in a different direction. And, the supposed discoloration was on the inside of the collar, not at all visible while wearing. It suddenly took on an urgency that is almost impossible for me to describe. He wanted to go immediately to the men's store (where we bought the suit) to get a new shirt. "I have to do it right now because there are only a couple of days left!" It was 3:30 in the afternoon, pouring rain, and I was in the middle of a project. I suggested that we wait until tomorrow morning to go, and reminded him that the wedding was a week away. Didn't work. He was so worked up, so anxious, it was hard to watch. "You don't expect me to sleep on this, do you???"

So, off we go. I managed to get into my car before he could even think about driving. He certainly was in no shape to drive, given his anxiety level. We successfully purchased a very nice new white shirt. On the way home he was visibly more relaxed. The rain was off and on, but suddenly started to pour torrential rains. Fortunately we were close to the highway exit and could meander at slower speeds safely to get home. As we exited the highway he said "Boy, that was a close call!" I thought he was talking about the rain. When I replied something about the heavy rain, he said "No! I mean it was a close call about the shirt! I didn't know what I was going to do!"

His world has gotten smaller. I see that more and more, as he ascribes intense meaning and emotion to what I would consider the minutia of life. This is the only explanation I can think of to explain the anxiety he experiences when something doesn't go quite right in his life.

Fortunately these anxious moments are not often. I'm learning how to help him through these times when they do happen. Basically it means being willing to go with the flow, not challenge, offer reassurance, and essentially be supportive.

We have some wonderful neighbors. We especially enjoy the young family who live next door to us. The other day I ran into Molly (the mom). She asked me if Jim was OK. She said that she and her husband had noticed some changes.....It was so sweet, her expression of caring and concern. I told her that Jim was having some problems with his memory, but I also let her know that he did not acknowledge any memory deficits. She said all the right things. And, said to let them know if there was anything they could do, or if we needed any help. How lucky we are to have such a wonderful family living right next door to us!

Jim and I have always enjoyed following politics together. One of our proud possessions is a photograph of Jim and Hillary. The picture was taken at a political event when she was doing her "listening tour" while running for NY state senator in 1999. Prior to my retirement, we had talked about traveling to the different states during the presidential primaries to be a part of the process and to witness firsthand history in the making. That kind of travel is not feasible with Jim's health changes, but we sure do enjoy following all the political news. Thank goodness for the internet news sources. Jim has had problems retaining some of the details of the political stories. But by checking his news feed frequently throughout the day it helps him recall with better clarity. We still love to talk about politics and commiserate about the latest news. (Seems like there is a big breaking story every day!)

Well, once again, thank you dear readers for listening to me. When I sit down to type, the words just flow. And I feel like I am talking out loud to each and every one of you. For that I am grateful.

Friday, August 5, 2016

There's a Stranger in Our House

Well, he's not really a stranger, but sometimes it feels that way.

It's been a while since I posted. My goal was to write at least weekly. Sometimes I'm not sure what to write, and sometimes I hesitate to write because I don't want everything to sound so negative. Jim and I have plenty of good times together. He is still in the early stages. From what I have read, some spouses do not recognize any cognitive changes until the person is well along in the decline. I certainly noticed very early on several years ago.

We definitely have had some frustrating moments. But looking at the totality, it really is nothing compared to what many caregivers go through. I expect to fine tune my coping skills as the disease progresses. I could be described as a planner. I like to know what to expect, and I appreciate opportunities to prepare for the future. This journey will definitely take me to places I've never been, and I hope I am prepared.

We were all set for an afternoon cruise around one of the local lakes. We live near a resort town that is fun to visit. It sits on a beautiful lake. Last week we talked about booking one of the touring boats around the lake. I suggested the one hour tour in mid-afternoon, as opposed to a dinner or lunch cruise. I figured the shorter time span would be easier for him. He was just as excited as I was, and definitely looking forward to it. Tonight he surprised me by saying that he has "no interest" in doing it. "It sounds boring."

Probably one of my biggest challenges is finding things to do that will keep him happy. It is not unusual for him to wake up and say "what are we doing today?" It's a big change for me. I have my own life of course. When I first retired, he was perfectly capable of finding things to do to entertain himself. Myself, I enjoy time with my friends and lots of physical activity. Jim used to enjoy working out at the gym. I finally cancelled his membership a couple of months ago. It has been a long time since he went to the gym, over a year at least. I certainly tried, including asking him to join me at the gym. He is always "too tired" or "too busy" (doing what???).

We used to go for long hikes together. Now, it is a slow shuffle for 2 miles at the most, and then he is tired. That may sound like a long distance for some people, but we used to go on very long strenuous hikes and enjoyed every minute. There is no physiological reason for this change in his energy level. Reading about dementia it appears that fatigue is common. I have not been able to figure out why. Is the brain on overdrive trying to fill in the missing pieces? Does this then tire out the person? I just don't know the answer to this question.

I miss the old Jim. The new Jim is a different man. Still looks the same, but acts and speaks so differently sometimes.

Yesterday I spent the day with my elderly mom. She needs a lot of help and relies on me for grocery shopping, banking, general errands etc. I am so glad that I am able to help her at this time in her life. I got home late afternoon and Jim was visibly upset (at me) that "there is no food in the refrigerator". What he really meant was that he could not find anything that appealed to him to eat for lunch while I was gone. It also means he did not look far enough in the fridge to find some of his favorite foods.

It's hard for me to not get defensive when he says things like this. We worked through this unsettling episode, but it's like a scar tissue that seems to be building with each hurtful comment. Even though I know it's the disease process, it is hard not to take it personally. I do so much for him, and I sometimes feel that I am not appreciated. But deep down I know that is not the case. He truly loves and appreciates me, it is just that darn disease process has changed him into someone I do not always recognize.

I have a very close friend whom I trust, and have been able to share with her what is going on with Jim. What a relief. Her emotional support has been nothing short of phenomenal. She listens carefully and always has something empathic to say to me. I cherish her friendship. We had lunch together last week and then went shopping. What a wonderful time we had! Lots of laughter, and lots of talking. It's one of those special friendships where we are mutually supportive of each other and truly enjoy each others' company.

It feels good to put into words what is in my heart and mind. Thanks for stopping by.