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.

Pretty Good Week

Jim's riding lawnmower essentially died, requiring the purchase of a new one. I was busy this past week and weekend getting ready for and co-hosting a wedding shower for one of my nieces, as well as helping my elderly mother. Normally I would have accompanied him to Lowe's,  just to be in a supportive role. But circumstances did not allow for this.

I knew something was slightly amiss when he called me with the question of which credit card he should use. Told him it was OK to use either one. He replied "I didn't know if we had enough left on the cards". I didn't really understand what he meant by that, but it seemed like he was looking for direction, so I told him to use the blue American Express card.

Jim and I have never carried any debt, other than a mortgage. We have always paid our credit card bills in full every month. He knows this, at least he used to know this. I've been doing all the finances, including managing our investments for the past several years. I always discuss updates with him to make sure he feels like he is still in the loop. But honestly, I don't think he would ask if I didn't bring it up.

When we connected at home later in the day, he attempted to articulate some problem with making the purchase of the lawnmower. It was so unclear to me what he was explaining, that I just kind of listened, and reminded myself of why I need to go with him for these kinds of purchases. The next morning I heard him on the phone engaged in a confusing conversation with someone from Lowe's. I'm guessing that sales people must run into this time to time. In the end it all worked out. Two days later the new lawnmower was delivered.

One of my favorite bloggers recently wrote about the uncertainty of knowing exactly where her husband is in his progression of dementia. https://aliceinmemoryland.com/2016/05/23/so-how-is-ralph-doing/  I relate to that; the need to know where we are at, what does the future look like, how will this play out, and how will it all end. But that is not how life works, of course.

Jim actually seems stable at the moment. Will he stay this way for a long time? I hope so, because this seems doable. I am getting better at knowing how to respond and how to make things less stressful. For both of us! Life is good. 

"What is My Birthdate?"

It seemed like such a simple question, but it was so sad to hear him ask it. Jim approached me last night with his driver's license in hand. The following conversation ensued:

Jim: "When is my birthdate?"

Me :"January 20, 1949"

Jim: "No, when is my birthdate?"

Me: "Your birthdate is January 20, 1949."

Jim: "No...(long pause) I mean....(long pause)"

Me: "You mean how old are you?"

Jim: "Yes! That's what I asked!"

Me: "You are 67."

He struggles with finding the right words. Not always, but sometimes. Sometimes he will say something brilliant! He cannot handle phone conversations that involve any kind of complexity. Yesterday he asked me to call to change the date and time of a Dr. appointment.

He can no longer operate the thermostat, cannot operate our new washer and dryer; the list goes on.

The other day he was struggling with the TV remote and asked for my help. After I helped him he said "My brain! What would I do without you!" But these moments of insight are rare.

The other night we were waiting in a restaurant for our takeout order. He blew me an air-kiss (goofy lovey-dovey thing we do at home). I said "I think the waitress just saw you do that." He said "do what?" I said"blow me an air-kiss". He said" I didn't just do that!" I let it drop, because what is the point. He doesn't remember. Less than 10 seconds ago. So sad.

Since we have been back from FL, I think he actually functions a little better. I have read that it is important to keep everything as consistent as possible. It makes me seriously rethink all our plans to travel. Kind of hoping for a Northern California this fall and London next spring. Just don't know if I have it in me to handle all the stress it will generate for him.

I'm getting good at NOT saying "don't you remember...?" because obviously he doesn't! I also am good at not showing shock when he can't remember his age, phone #, address etc.

He trusts me, and that is everything. He is so appreciative of everything I help him with.

Life is still good, and I am grateful for his love.

Police at Our House!

Last summer we decided to put in a security system to monitor our home while we are away during the winter months. It seemed like a good idea; we could monitor the thermostat remotely to make sure the furnace was working and the security system would alert if someone entered via door or window, or if motion detectors were tripped. We actually live in a very safe neighborhood, but being gone for 3 months seemed like a long time to rely on friends/neighbors to check on our house periodically.

We use the system at night as well, putting it in the "arm stay" mode. This turns off the motion detector, but will alarm if doors or windows are opened.

I realized last fall that Jim is not able to arm or disarm the system without looking at a very short list of instructions. It's pretty basic; 3 steps for arming and 2 steps for disarming. (Example: disarming requires touching the red bar and then entering our password.) Our password is one that we have used for years for our garage door opener. Every morning and every evening I always ask him if he wants to arm/disarm, or if I should do it. He always says, I'll do it, but you watch me. He faithfully puts on his reading glasses and pulls out the instructions, and proceeds to do it under my watch.

Well, the other morning he awoke before I did, and according to him, he saw "a lot of smoke" outside. He opened an outside door to check it out, and you guessed it, the alarm went off. (The smoke he saw was simply the vent for our gas furnace to the outside.)

Meanwhile, I awaken. I am still not quite awake, but Jim starts to tell me that "the smoke alarm went off" (it didn't) and "I went outside to check out the smoke I saw". Next thing I know the police are knocking at our door. I'm still fuzzy trying to figure out what had happened (after all, it is only 6:00AM). The police were very nice, said don't worry, these things happen. Sigh.

I finally figured out that what Jim thought was the smoke alarm was actually the security alarm that went off when he opened the outside door. He felt bad afterwards. I tried to make light of it so he wouldn't worry about it. I think it really made a huge impression on him, with the police showing up. The next day he was still talking about it, and saying he would from now on make sure that the alarm system was off before he opened any doors in the morning. I encouraged him to wake me up, if I was still sleeping so that we could "do it together". He liked that idea :-)

More and more I am filtering almost everything, trying to evaluate how decisions will impact Jim. I'm getting better at it, I think. It's not just for Jim's sake, but for mine as well. Easy does it, one day at a time, keep your cool.  So cliche, but so true.

More Changes and More Challenges

Last fall, I saw evidence of Jim's difficulties with spatial relationships. When we replaced our bedroom carpet last September , I distinctly remember my shock and dismay at his inability to comprehend the simplest of explanations (by the installer) of how the carpet would be cut around the built in dresser drawers in the walk-in-closet. Finally the installer turned to me and said "I'll let you explain it".

We are in the process of replacing our living room sofa, love seat and chairs. I know that this will create a number of high stress situations for him. If I could, I would simply hang on to what we have, but they are about a year past needing to be replaced. I'll spare all the painful details, but the OCD behavior kicked into overdrive, along with his difficulty in processing and understanding the measurements needed for ordering the furniture.

This, from a man who brilliantly designed and made furniture as a hobby when he was younger. He always had a superior sense of spatial relationships.

I have learned how to psychologically manipulate (I know that sounds like a terrible word) so that he accepts what I have to say. It helps to bring peace to the situation and avoids having a prolonged, painful discussion where the outcome is often not good for either of us. For example, when he was obsessing about how to determine the dimensions of the sofa, I turned the conversation around by praising him and giving him credit for figuring out the best way to measure. Then I stated the conclusion that he came to (that he really didn't!) was the right answer. It worked. He was content, and the sofa was correctly measured.

We built our house 11 years ago. At the time, the hope was that we could age in place. We designed it as a ranch style home, thinking it would help to minimize any barriers as we aged. Little did we know that our biggest threat  (at least at this point) would not be physical disabilities, but Jim's cognitive limitations.

It still feels good to write about this. It helps for me to put this in writing; kind of a substitute for psychological therapy!  For the few who are reading my blog, thanks for reading! I know that I get a lot of support from reading other blogs, and hopefully my blog will also help others to know that they are not alone.

Another New Normal

We're home, after escaping the cold winter for three months. It feels good to be home! I spent yesterday with my elderly mom, helping her with errands, grocery shopping and also took her to lunch. She no longer drives and has serious mobility issues. A hired helper and her adult children all pitch in to help keep her quality of life as good as it can be, given her advanced age and her multiple health problems. She is still sharp as a tack, for which I am grateful.

While I was gone yesterday, I provided Jim with some guidance on things he could do to entertain himself while I was gone for the day. He, on his own, decided to do a bit of yard work (although it is too early in the season to do much of it). Also gave him a list with two items to pick up at the store, if he decided he wanted to do so. When I got home, the items he purchased were totally wrong. I was tired and a little grumpy after having been gone from home for almost 7 hours. I'm sure he sensed the edge in my voice when I questioned why he deviated from the list.

Of course I then immediately felt guilty for the edge in my voice and suggested that we go together to return what he had purchased and get the original two items on the list. It really doesn't matter why he didn't purchase the correct items. His reality, his reasoning, and his judgement are just not the same as they were. And I need to adjust to the new normal.

We got into his car (he wanted to drive). He looked at the dashboard and fumbled his fingers between the GPS, the different knobs, and then said "wait, what am I doing?". I said "you're going to start your car (pointing to the keys/ignition). Do you want me to drive?" Of course he insisted on driving, and actually did well. But those concerns are topic for another post sometime.

He has an appointment Monday with his family doctor. I will not be going, since Jim has made it clear that he does NOT want the doctor to know about my concerns with Jim's memory. "It will just lead him down the wrong path, when there is nothing wrong."

I am constantly aware that this is our new normal, and that it is as good as it is going to get. I try to internalize this so that I can appreciate what we have now, knowing that it will not get better. Further decline is inevitable, just a matter of how quickly.

Alice http://aliceinmemoryland.com has a great blog, where she shares her experiences about her husband's cognitive impairments. In her most recent post, she writes about the many tests that can be found on the internet to test your cognitive ability. If you take one of these tests, you immediately sense the anxiety it can produce, which of course impacts on performance.

Anxiety seems to be key right now. The less stress there is, the better he does. The spiral:  "He's anxious, then I'm anxious, then he gets more anxious, then he struggles and fails, and then we are both even more anxious".

The funny thing is, if you asked anyone who knows me, they would tell you that I am a mellow, low-key, relaxed person. And I still am, most of the time. It's just that these new challenges in our lives are making it more difficult to maintain this composure. Just trying to keep the peace.