Thursday, June 23, 2016

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 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!

Saturday, June 11, 2016

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!

Thursday, June 2, 2016

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.


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.