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.

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.

Memory for 2

We went to Philadelphia last weekend. We both enjoy this city, rich in history. We stayed downtown and used the Phlash bus to get around. The Phlash bus runs a continuous route that takes you to all the different historic sites. We did a LOT of walking as well. We had a wonderful dinner with friends of our's on Sunday night. A good time was had by all.

I did all of the driving down, and most of the driving to go home. Jim didn't seem to mind, thank goodness. Even with our GPS and with me helping to navigate, it would have been too much for him. He does OK driving locally, but anything new and different causes anxiety, frustration, and generally makes for a miserable time for both of us.

Being in a different city brought to the surface the many limitations he has when he is out of his element. I heard him ask with amazement many, many times "how do you know that?" The funny thing is, he does not view it as a deficit that he has, but rather he sees me as being very smart.

The last few times we have traveled he has forgotten to pack some pretty obvious things; socks, favorite sneakers etc. On this trip I surreptitiously checked his bags prior to leaving and was then able to casually say "did you remember to pack your ..."

I planned our activities so that we would enjoy the best that Philly has to offer. We managed to check everything off our list! Jim struggled with the details of our plans; I just focused on telling him that we were OK. He responded well to reassurances that we were on the right bus, at the right location, etc.

There are different descriptions for the stages of dementia. Based on this one http://www.alzheimers.net/stages-of-alzheimers-disease/ I would say that Jim is in stage 4; moderate decline. I'm guessing that it is not an exact science and that there are probably variations that don't hold true to the description. Plus, some days are better than others. And some are worse.

I am learning a LOT about home maintenance. Jim has always maintained a list of resources for any house related problems. I never really paid any attention to it before, but now I absolutely need to. He is not really capable of handling a phone conversation with any complexity in it. He gets confused, forgets what the issues are, leaves out critical information etc. So now it's up to me. I'm getting used to it.

From what I have read, denial is fairly common in Alzheimer's dementia. It is not necessarily an intentional denial, but rather a lack of insight. I've also been reading about doctors who are not forthcoming with patients in giving them a diagnosis of dementia. Reasons for this include fear of damaging their relationship, concern the patient is too fragile to handle the diagnosis, trying to protect the patient. It must be frustrating for physicians, as there is no cure, no fix. Doctors will sometimes prescribe cholinesterase inhibitors (such as Aricept). But this is often done at the request of the patient or family. Research shows that while the medicine may improve cognitive functioning for a year or so, it does NOT stop the progression of the disease. How sad.

Our next trip is in August for a wedding. Travel plans are underway, and I'm anticipating a wonderful weekend celebrating with friends.

Memory for 2. I'm ready for the challenge!

Planning for an Uncertain Future

I remind myself frequently that we are still early in this journey. I read other blogs, and realize that others have many more challenges than Jim and I do. It helps me to appreciate what we have now, knowing that greater challenges are sure to follow.

Shortly after I retired, I arranged for us to meet with an attorney so that we could do our wills and get our health care proxies and living wills written. We also did power of attorney for each other. POA is a very powerful thing to do, not to be taken lightly. We both agreed that we wanted this set in place so that we could act on the other's behalf, should the need arise. Of course when we did the POA, I was thinking ahead to the day when I might need it because of Jim's further cognitive decline. It's funny, but the other day Jim said to me "shouldn't we do a will or something?" I reminded him that we had already done it, including the POA and health care proxy. His comment back was "well, as long as you know where it is." I assured him I did!

We decided against long term care insurance quite a few years ago. Working in the health care field, I saw patients who were put through the wringer when the time came that help was needed. Fighting the insurance company for the financial benefits promised is a stressor that older folks don't need. Long term care insurance companies are able to raise the premiums at will. If they raise them to the point where it is cost prohibitive, you are out of luck, and there is no return on the money you have already spent for this insurance. Some long term care insurance companies simply get out of the business, leaving the people who paid all of these premiums high and dry. I'm sure there are reputable companies out there, but we decided to self-insure. In other words, money that we would have paid in premiums we put into our investments. Another option for funding elder care is the  reverse mortgage. This is not without pitfalls as well. No perfect solution, and I think it also depends on individual circumstances.

We've always managed our household so well together. I know that finances can be a strain for many couples. Not so for us. It was an area that we loved planning and talking about. We shared financial goals and it was always easy for us to agree on how we saved and how we budgeted our money. It still is, except that now it is me, alone, who is following the investments, rebalancing our portfolio, doing the spreadsheets, and paying the bills. We used to love to do this together, but now it is painfully frustrating for him to be a part of it. So I just do it, and he is happy he doesn't have to be involved. We both have investments from employer based savings plans. The POA will allow me to access the funds that are in his name alone when the time comes that I need to do this. By having the POA in place now, it saves a lot of hassles and headaches that would occur at some future date when the funds are needed.

As far as housing, for the last few years I've gone back and forth on whether we should downsize further. Should we give up home ownership and just rent? Or should we sell this home and buy something smaller? For now, the answer seems to be just to wait and see. I love our home, our neighborhood. And I love it when we can say goodbye to winter and head south to FL.

Jim is still able to do a lot of the outside maintenance. He is very fussy about the lawn, and it always looks impeccable. We hire for the big jobs, such as painting the house, tree removal. Our house is new enough so that mechanically and structurally it is pretty sound. But I can look into the future and see a time where we will want to live more simply. Just not yet.

Well, when I started this post I wasn't sure what I wanted to say. But when I started typing, the words just seemed to flow. As always, it feels good to be able to share my thoughts with all of you. Thanks for listening!

It's Late; 11:35 PM To Be Exact

It is 11:35 PM, which is late for me to still be awake. My mind doesn't seem to want to rest tonight. I usually have no problem falling asleep, but I seem to have a lot on my mind. I'm hoping if I write about it, perhaps I can put things to rest.

We have a wedding to go to this weekend. It is about 2 hours away in unfamiliar territory. We will pick up my mother, and then head out to the wedding. I know that I need to be the one driving. Jim does best with short, familiar trips. Will he agree to me being the driver this time? We'll take my car because it is larger and can easily hold all of us. Usually if I say something like "I'd really like to drive today" he is pretty agreeable. Especially because we will be driving my car and not his. Fingers crossed this all goes smoothly.

Then there is the wedding itself. Will people notice? I always wonder. A lot of the things that I notice are things that perhaps others would not. They might give it a brief thought, but then just move on. A lot of times the things I notice are not off a lot, just "half a step off", as I like to say. I often times find myself helping to explain, offer a minor correction, filling in an obvious gap when we are in public.

The more obvious evidence of cognitive loss are seldom displayed in public.  Maybe on some level he does know that he has limitations. Maybe he chooses to cover it up as best he can in public, and feels safe to ask/say these things to me in private.

We are having our house painted by someone we know who does this for a living. Jim became focused on the chargers that the painter left plugged in to outlets in our garage overnight. (I'm not very handy, but I think the chargers are for power tools that the painter uses.) After the painter left, Jim obsessed about how it was dangerous to leave them plugged in overnight. I tried to reassure him to no avail. He called the painter to question him about it. This is after the painter put in a very long day of hard work. I listened to the message that he left on voice mail. I can't even imagine what the painter thought when he listened to that message. I am embarrassed. I admit it. The painter never called back (no surprise to me). Jim insisted that we unplug the chargers while we sleep tonight. I sure hope they have enough charge in them for tomorrow's work.

The brother whom I am closest to is the only person who has asked me about Jim and his cognitive changes. It is a relief to have someone know, someone I can talk to. Is he the only person to notice, or is he the only person to have the courage/nerve to say something to me?

It always feels good to put my thoughts in writing. I think I'll do one of my Ken-Ken math puzzles and see if that tires out my brain enough to induce sleep.

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Addendum: Things always look better in the morning :-) The chargers are plugged back in and look to be fully charged. I plan on buying lunch for the work crew today. Then headed out to get my car serviced. Life is good. Hope this finds your day filled with warmth and sunshine.