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.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4927869/ 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. http://www.kevinmd.com/blog/2016/07/alzheimers-dementia-world-denial.html 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 http://www.medscape.com/viewarticle/753761 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.

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.
https://ftd.med.upenn.edu/about-ftd-related-disorders/what-are-these-conditions/progressive-language/logopenic-variant-of-primary-progressive-aphasia-lvppa

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.

Mental Gymnastics

One of my favorite bloggers recently wrote a very funny post about her husband using too many pronouns http://bagladyinwaiting.blogspot.com/2016/06/bag-lady-report-conversations-with.html 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.