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.

Saturday, July 23, 2016

Will This Journey Make Me a Better Person? I Hope So.

One of the ways that I deal with uncertainty in life is to read. I research and read everything I can about the topic in question. Many readers will remember the pre-computer days, when researching meant driving to your university or public library, sorting through a card catalogue, and then searching through the stacks for the pertinent books or journal articles. Life is so much easier now!

Looking back over my past posts I realize that my thinking and understanding about this terrible disease is a work in progress. Some of it is altered by the many helpful and insightful comments left by my kind readers:-) And some of the changes are due to my own reading and researching. I thought I would share a couple of my more recent discoveries. This article discusses the scientific evidence   on the benefits and the challenges of a timely diagnosis. Benefits include early interventions, better management of symptoms, avoidance of medications that may aggravate the situation, and cost savings. Barriers include risk of stigma, increased risk of suicide, shortage of diagnostic services, and reluctance of health care providers to make such a diagnosis when there are no disease-modifying options available.

This really got my attention. It discusses the fear of loss of identity in the newly diagnosed. This makes so much sense to me. Jim had a very high-powered job with a lot of responsibility. His brilliant mind and his winning personality made him the perfect person for his job. I can only imagine how devastating it would be to realize that you are losing the essence of who you were for so many years.

Further reading reveals that suicide is higher in newly diagnosed dementia patients. Firearms were the most common method of suicide. It appears that the loss of identity is a big part of the increased risk for suicide. This really gave me pause.

On a lighter note, it has been a good couple of weeks. One of Jim's friends has been after him to join a group of guys that gets together for lunch once a week. They are all friends he grew up with. Jim has always been hesitant. I would encourage him, but he always gave an excuse of why he shouldn't go. Last week I had plans to go out for lunch and shopping with a friend of mine. I told Jim I wasn't sure what time I would be home, but would probably be gone for a few hours. He said "what am I going to do today?" He then answered his own question and said he would go to lunch with the guys! Hurray! By his report, he had a great time :-)

Had a brief tense episode when he became concerned our air conditioner was not working. It was such a convoluted, confusing conversation, I couldn't possibly repeat it. Patience, a calming voice and lots of reassurance got us over this hump.

He continues to struggle with what are commonly termed "executive functions". We hired a worker for a repair on our home. The bill came to $150. Jim opened his wallet and found two $100 bills. The worker said, "here, I have a $50 bill to give you if you want to give me $200". Jim absolutely could not process this and called for my help. I'm just so grateful that he feels so comfortable to ask for my help. He handed me his wallet and said "here, you can do this".

But I realize that what I write about is really little stuff. It's important for me to remind myself of this. Others are so much further along in the journey. The shock of realizing how he was changing really shook me up at first. I never really had any denial; it was so clear to me what was happening. But at the same time it was a big adjustment for me. The man I married and the man I love so dearly was changing before my very eyes and there was nothing I could do about it.

But as time goes on, I'm adjusting how I think, how I react and how I respond to all of these changes. And, I think in the long run it will make me a better person. At least I hope so. I'm hoping that as this journey continues I'll find the strength to be the person I know I should be.

Saturday, July 9, 2016

The Filter in Our Brain

Our social life is not what it used to be. Part of it is Jim's preference; I'm guessing at some level he senses increasing difficulty in being a part of social conversations. Small talk is always easiest, but anything in depth and it is obviously more of a struggle. He becomes much more quiet and looks to me to keep the conversation going.

Part of the decrease in social activities with others is because of me. We used to routinely go out to dinner with friends. Now when faced with an evening with friends I worry that Jim will exhibit irritation or anxiety ("this food is awful!" "where is that waiter?!").  I'm embarrassed by these things, worrying that people will only see it as rude behavior (which it is!). Once in a while he will say something that I know will hurt someone's feelings. I understand that it is part of the disease process, but for others it is likely seen as mean-spirited.

The filter that most of us have in our brain that keeps us from saying or doing something inappropriate does not work as well for Jim. The other day he said something disparaging about someone's (a stranger's) appearance. It was said loud enough where I was concerned that the person heard the remark. This is so unlike him. One of the things that first attracted me to him was his kindness to others and his gentle spirit, especially to those less fortunate.

For balance, I need to point out that many times he can be very sociable, very funny and a true joy to be around. I just never know what to expect when.

The struggle with word finding continues. I've been reading about Primary Progressive Aphasia, logopenic type, which is a type of dementia that is usually a variant of Alzheimers. It is notable for short term memory loss, problems with word finding and with repetition. This is a good link that gives the specifics.

The other thing about dementia is that on autopsy they often find "mixed dementia". In other words there is more than one type of dementia that is manifested in the brain.

I don't really know if PPA-logopenic is the correct diagnosis, but he certainly has these symptoms. He has an upcoming appointment with his PCP next month. When it gets closer to the date, I will make another attempt to see if I can go with him to discuss these concerns. So far he has not agreed to this as he does not think that he has any problems. While there is no treatment or cure, if the diagnosis was known and acknowledged I think it would be helpful, at least for me. At the same time I recognize that Jim may never acknowledge any deficits. Apparently this is fairly common for those with Alzheimers.

I've decided to be more open to joining a support group. I tend not to be a "group" person per se. But I figure it wouldn't hurt to look at my options and give it a try. I think that one potential benefit would to feel like I am not alone. My online support is wonderful! But perhaps some "face time" with others going through the same thing might be of benefit to me.

These days my brain filter is on high alert, and always running through the very specialized caregiver filter. I suppose in some way it is an attempt to compensate for Jim's brain filter that at this point is a bit askew. We are both adjusting to these life altering circumstances as best as we can. It gives me peace to be able to write these words and know that those who read are kind, compassionate and only wish the best for us.

Thank you dear readers. I so appreciate each of you who take time to read my blog.

Saturday, July 2, 2016

Mental Gymnastics

One of my favorite bloggers recently wrote a very funny post about her husband using too many pronouns I had to laugh when I read it, because Jim has often done that over the years. However lately it is more than just trying to figure out who he is talking about. It is often what he is talking about that keeps me guessing.

We went for a lovely walk today around a small lake. Temperatures in the low 70's, sunny, light breeze. Just a beautiful day. Stopping for ice cream on the way home made it all the more special. While driving home, out of the blue, Jim said "maybe we should go there".

Me: "Go where?"

Jim: "you know....." (long pause, I could see he was desperately trying to retrieve the correct words).

Me: (searching my brain for any inkling of what he might be trying to say) "go to the store?"

Jim: "no, up here" (pointing straight ahead).

Me: (finally figuring out this was a reference to a conversation we had yesterday) "you mean the Jazz Fest?"

Jim: "Yes!"

I cannot imagine how frustrating this must be for him. Things like this happen several times a day,  where he struggles to find the words he wants to say.

We went to a men's store to buy him a new suit for an upcoming wedding. He picked out a very nice suit. While he was changing back into his street clothes, the salesman and I picked out 4 ties that would go nicely with the suit. Jim comes out of the dressing room, and I ask him if he likes any of the ties we picked out. He quickly pointed to one and said "this is OK". We're at the register cashing out and the salesperson puts the tie into a bag. I'm finalizing the payment, and Jim suddenly says "wait, what about a tie?" The salesman quickly says "you picked one out; it's in this bag!" Jim clearly does not remember this and tells the salesman "no I didn't!"

I hate situations like this. It leaves everyone feeling bad. To make the best of it, I pulled the tie out of the bag and said "maybe you would like to look at other ties to see which one you like". This worked well, and he picked out a beautiful tie that goes well with the suit.

When we got home he fretted over the next two days about alterations that are being done on the suit. He was convinced that the tailor did not know that the legs needed to be tapered a bit and hemmed. I just kept reassuring him that the tailor pinned the pants so that the fit would be just right for him. Fortunately he believed me, and he did not call the tailor.

On our return from Florida this spring, we discovered a pine tree that had fallen during high winds. We had a local landscaper remove the tree and replace it with another, smaller one. In normal conditions the new tree would not need too much attention, but this has been a very dry, hot month and the tree is starting to show some damage from the heat and dryness. In retrospect, it should have been watered by us. But I have never paid attention to these kinds of things, because Jim did all of the landscaping work, and loved it. Times have changed.

Jim pointed out the brown areas on the tree and angrily said he was going to call Pete and ask him what he was going to do about it. Jim had the details all wrong. He insisted that this occurred 3 years ago and that it cost $1200. (It was only $350). And it wasn't Pete; Pete was the builder who built our house 11 years ago. Oh my goodness.

Realizing that the damage to the tree was our fault because we did not properly water it, I knew I had to intervene. Otherwise he would have called the wrong guy demanding that he replace the tree. I gently tried to relay the facts. At first he insisted that my memory on the facts was incorrect. Fortunately I keep track of everything! I was able to pull out my expense sheet from May of this year to show him the details of who, when, and what happened. It worked.

Mental gymnastics is what I am calling it these days. When things are said that are not accurate, I do not correct unless it is important to do so. Can you imagine what it would be like to have someone correcting you all day long? Not good.

So I put on my "caregiver filter" as I call it. This filter helps me to try to understand what he is saying,  helping him to fill in the gaps when needed. I try to handle situations in ways that do not hurt his feelings. I'm not perfect, and never will be, but I am definitely getting better at it.