Saturday, October 15, 2016

Hot Means Cold, Yes Means No

Ah, the challenges of communication! Lately I find that I need cues other than the spoken word to really understand Jim. The more anxious or frustrated he is, the harder it is for him to accurately articulate what he is trying to say.

As I have written before, Jim struggles with climate comfort. For the most part, I find that if I keep the temperature at 74 degrees, he seems content most of the time. (As a side note, my body thermostat runs much hotter. I'd feel much better at 68 or 70, but 74 brings the peace, so that is what it will be.)

The other evening, for whatever reason, the 74 degrees was not working for him. The following conversation ensued:

Jim: "It's way too cold in here!!! What is the temperature???"

Me: "It's set at 74, but if you are too cold, I will turn it up."

Jim: " No! This says it is 54 degrees!" (He was looking at our inside weather monitor that measures both inside and outside temperature.)

Me: "Let's look at the indoor temperature, which shows it is 74. I can turn up the thermostat if you are  too cold."

Jim: (Angrily) "It's too cold in here!"

As he says this, he is taking off his zip up hoodie he was wearing over his t-shirt. I suddenly realize that he is too hot, not too cold.

Me: "Ok, I'll fix the thermostat so that you'll feel more comfortable."

Notice how I carefully chose my words with that last statement. And, I had to pay attention to his body language, not his words to figure out what he was trying to tell me. More and more this is happening when he is anxious or upset, where yes means no, and no means yes.

The problems with word finding continue and seem to be increasing. Last night as he came to bed he woke me up to ask:

"When is ........" (gesturing with his hands held palms up).

I'm half asleep and have not a clue as to what he is talking about.

"You know..........on Monday......."

I'll spare you the painful details of the belabored conversation we had, but essentially he thought the presidential election was Monday and he was afraid we would forget to vote. He has been worried about this for quite a while, and we've had several conversations regarding this. I put it in his appointment book, but I don't think that helps if he can't remember to look for it there.

We met with our financial advisor this past Monday. It really was a brief, general meeting for Jim's benefit. Later in the week I met alone with our financial guy. We reviewed our portfolio, and we discussed the reality of Jim's shortened lifespan given his dementia diagnosis, as well as the expected expenses of home care for Jim. This definitely impacts on our/my financial future.

Long ago, Jim and I decided against long term care insurance. Instead, we chose to self insure, taking the amount that would be payed for LTC premium and pumping that money into our investment portfolio. Our finance guy has this fancy software that evaluates and projects your rate of return on investments and projects the income flow over your life expectancy. It looks like we'll be OK, even with Jim's health changes and projecting the costs of his care. I know that life is full of surprises (!), and I'm prepared to adjust as needed if financially we need to do so.

I met with the local Alzheimer's Association yesterday. They are a wonderful organization! Two very caring young women spent about an hour with me. They listened, and they encouraged me to guide the focus of our meeting. They provided me with lists of resources (gerontologists, counselors, support groups), and also had some good advice regarding coping skills for the caregiver. I was so impressed with their professionalism, their knowledge and their caring, empathic listening skills.

Update on the "leaf eradication" project (as Patti describes it) :-)  I have ordered a battery operated leaf blower. Friends of our's have one, so I know that it is light weight and easy to use.  It should arrive on Monday or Tuesday. I haven't told Jim yet. This is the kind of thing where it works best if I don't tell him too much ahead of time, as he will worry and be anxious about it. Once it comes, if he does not like it, I'll tell him it is for ME and that I want to be able to blow the leaves. Once he sees me use it, I'm guessing he'll love it and want to take over the leaf blowing again :-)

It is still very early in the season; I would guess that maybe 10% of the leaves have dropped. Jim is out there several times a day with his push broom and rake, trying to get every last leaf. It's good exercise and gives him a focus, but it is causing him way too much anxiety. He frets during the evening about what the driveway will look like the next morning. And, when the leaves really start falling, he would really be in trouble trying to keep it all spotless with the broom and the rake. We shall see.

So goes another week in the world of Jim and Carole. As always dear readers, thanks for stopping by!

Wednesday, October 5, 2016

Looking to the Future

The dementia companion cards arrived! I like how they look. I'll always make sure I have a few in my purse so that I can feel more confident when we go out and about.

I've known for some time that I needed to find some additional support. Eventually, I will join a support group and I think I will enjoy the process of being a help and support to others, and in addition feel supported by others.

I struggle most with the personality and behavior changes that I see. The other stuff is easy. I'm a helper by nature, so my instincts are good most of the time. I run into difficulty when I feel that I am being wrongly accused, and I know there is nothing I can do about it. It hurts me so deeply. When Jim becomes angry at me over something that he is misunderstanding, it tears me apart. I know he can't help it. His memory is bad and his perceptions are off. It is my personal failing that I can not overcome the hurt that I feel when these kind of things happen.

I know I need some perspective, and I think a counselor could provide me with some guidance. The problem is, how the heck do I find someone that has some experience in working with caregivers? My very close friend Amy (who happens to be an amazing Social Worker!) suggested calling the local Alzheimer's Association and asking them for a recommendation for a counselor with experience in this area. So I did.

I actually have an appointment next week with a very nice person who does an intake interview. She was so nice on the phone! She will let me know about the resources that the AZ Assoc. offers caregivers (and the loved one). She will have ready some names of counselors in the area who have experience working with caregivers. I feel better already.

We meet yearly with our financial advisor. Last year when we went I remember that Jim pretty much just sat there and didn't say too much, other than some small talk. When I think back to that time, it reminds me of how much ground Jim has lost since then. Privately, I called our financial guy a few days ago to let him know what was going on with Jim's dementia. It sounds morbid to talk about it, but I know that I have to plan for the future.

On average, at the point of diagnosis, the life span of someone with dementia is about 1/2 of what it would be if they did not have dementia. (For example, according to the Social Security calculator, at age 70, the average male can expect to live another 15 years. If diagnosed with dementia, the life span on average would be 7.5 years.) I realize this is simply an average, or an estimate. A lot of other factors can weigh in to alter this as well; no one really knows. But it's a reminder that dementia will likely shorten your life span. This has implications for timing for social security benefits, investment strategies, planning for care at home etc. Lots to think about.

Next week Jim and I will meet with our advisor for a brief, general meeting. A few days later I will meet with our advisor by myself, to discuss long term financial planning for Jim's care etc. The discomfort I feel in "sneaking around" like this is very real. But at the same time, I feel that I don't have too many options at this point.

I'm in the process of changing our primary care doctors to a gerontologist who practices in our area. She comes highly recommended, and I look at it as a good opportunity to provide Jim with quality care as we travel through the next stages of life. Also, by both of us having the same doctor (we don't, now), it will be easy for me to communicate any concerns. Years ago, she diagnosed my dad with Lewy Body Dementia . No one else knew what was wrong with him. She, being the expert in gerontology immediately knew what the diagnosis was. It was a relief to finally know what was wrong, and she provided wonderful support and care for my dad and our family.

Looking to the future. So much to think about. Once again, thanks for stopping by. I can always count on my caring, faithful readers. My friend Amy (who reads this blog) mentioned how wonderful and supportive the commenters are. I so agree:-)

Monday, September 26, 2016

Leaf Your Troubles Behind

A little play on words...

This is a picture of Jim, sweeping the driveway and the yard(!) with a large sweep broom. I think I have mentioned before how meticulous he is with our yard. If you look closely, you may see a few leaves on the grass. He will get every one of them! With each passing year it becomes more of an intense focus for him, to make sure he is out there chasing down every leaf that falls. We've talked many times about waiting until they build up a bit, or even mulching them with his mower, but he will have none of it. While there is no harm in what he is doing, it does represent the level of anxiety he experiences if everything is not just right.

Jim had to replace our leaf blower this year. It is a little different from the old one. Wouldn't you know it, he is not able to operate it. The guy who helps us with our landscaping was kind enough to give Jim a lesson the other day on how to operate it. You can be sure that I was all ears, taking note, knowing that Jim would never retain what he was being shown. When the leaves actually start really falling and building up, I'll get out the leaf blower and go over it with Jim.  It's a pretty heavy duty blower; I'm not sure I could pull the cord to start it. But I certainly can talk Jim through the steps.

The other day we were leaving for the grocery store. As I pulled out of the garage and started down the driveway, he yelled "wait!". I thought something was terribly wrong; his voice was filled with anger and anxiety. I stopped the car, he opened the door, picked up the shells from a nut that had fallen onto the driveway and tossed it into the wooded area. I cannot imagine what it is like inside his brain, to live with this kind of worry and anxiety.

While Jim was outside sweeping the yard and driveway this morning, his closest friend, Mike, happened to call. I picked up the phone and explained that Jim was outside, but that I'd have him return the call.  Mike asked me about the changes he had been seeing in Jim. What a relief! I was certain that Mike must have noticed, but it didn't feel right for me to bring it up to him. We must have talked for 20 minutes. He said he noticed the changes quite a while ago. He said all the right things. He encouraged me to call him for anything, even if it is just to talk. What an amazing friend. I feel so grateful.

I've ordered the "oops" cards that I spoke about here. I'm not sure how this will work, but I'll have them on hand for those awkward moments. (Thanks Amy!)

My idea of leaving a note with my return time and cell phone number is working well. It was an easy fix, and leaves me feeling more comfortable with going to the Y, helping my mother etc.

One of the blogs I enjoy reading is Kathy's Retirement Blog. You can check it out here. She recently wrote a two part post about the role of caregiving. It was a good, thoughtful discussion with helpful comments from other readers. It was a good reminder that as caregivers we need to find time to take care of ourselves to minimize the stress and strain that come from this challenging role. My time at the Y and the time I spend with my friends are my two main outlets.

Well, another post is written. My soul feels lifted. It means everything to me to know that I can share my most private thoughts on this page and know that these words will be "heard" by caring supportive friends. So thanks for stopping by. Until next time....leaf your troubles behind :-)

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!