Thursday, March 31, 2016

Waking Up

Waking up to one of our last days here; we leave on Sunday morning. Looks like snow in the forecast to welcome us back home. Soon enough, though, it will warm up to more seasonable temperatures. But this morning we are waking up to a gorgeous sunrise over the ocean. Mother nature at her best.

The morning sun is foretelling another beautiful warm day. The ocean is dotted with shrimp boats, parasails, paddle boards and surfers. There is a stage erected on the beach, which makes me think there will be a surfing competition later today. Surfers do not necessarily fit the stereotype I had. They include all ages;  the very young, as well as the very old, men, women, boys and girls. I admire the skills they demonstrate as they navigate the waves on their boards.

I found a sand dollar the other morning on one of our beach walks. So beautiful, so delicate. It was missing the cilia, so I know that it was not alive. I've cleaned it up and will bring it home with me as a nice memento of our time here.

Soon enough, we'll fall into our usual routines at home. I'll be happy to start my classes at the Y again. My mom will be needing my help, and my disabled brother will be glad I am home to help him with things he is not able to do for himself. My siblings have filled in for me while I've been gone, and for that I am grateful.

I've already started to pack, and over the next couple of days Jim and I will make sure we return with all we have brought with us. We are "eating down the fridge", and it looks like there will not be too much waste.

We purposely chose to leave on Sunday, hoping to avoid the mad rush of other snowbirds leaving at the end of the month. We'll do two overnights to get home. Many would choose to make the drive with just one overnight. We have found it to be less stressful to keep the driving to about 8 hours a day, with plenty of breaks along the way.

It will be good to wake up in our own bed.

Monday, March 28, 2016

It's So Different This Time

We are winding down our 3 months in the south. So grateful that we have been able to escape the cold winters. When I think of the last few years we have wintered in the south, I realize how different it is, this time.

Almost every day, I am asked what day it is, when do we have to go back, and does everyone know that we will be home soon. And every day, I answer. A large calendar to cross off the days did not help.

I spoke with my mom today. She is elderly and battling a return of her lymphoma. She is a trooper, and doing reasonably well on her new chemotherapy pill. She asked about my birthday and how we celebrated. I didn't have the heart to tell her that Jim did not remember. I have purposely limited her contact with Jim, avoiding situations where it would be obvious. When we drove her home on Christmas day, he needed turn by turn instructions on how to get to her apartment. I don't know if she noticed; if so, she never mentioned it. We've driven that route a million times over the years. She would worry if she knew what was going on, and she certainly doesn't need any more worries at this point in her life. In addition, with Jim's denial/lack of awareness, it makes it hard to speak of this to others. It feels like a betrayal.

In fact, writing this blog at times feels like a betrayal. But I do it for my sanity; it really is therapeutic for me.

This is the first year he has forgotten my birthday, and I did not have the heart to tell him or remind him, knowing he would feel so bad that he forgot. For as long as we have known each other, he always made a huge deal out of celebrating my birthday. Loving, thoughtful card, cake, balloons and gift. The saddest part is that it robs him of the enjoyment he would get from "surprising" me with the birthday celebration.

I just finished a great book on cardiovascular developments over the last century. So interesting and fascinating. I was telling Jim about it and mentioned the development of penicillin as a treatment for rheumatic fever, which was huge in preventing the associated heart disease. He immediately said, "thats right, penicillin was discovered by Fleming". I almost fell over. Jim has always been known for his broad based knowledge on a lot of topics. Smartest guy I knew. Somehow he remembered who discovered penicillin. Yet, an hour later when I mentioned our Grand Canyon trip we took last fall, he said "wait, I don't remember that!". I prompted him by reminding him of the helicopter tour we took. After what seemed like an eternity, he finally remembered, and offered up a few nice memories from our trip.

I realize that this is really still the beginning stage. There are many caregivers who cannot leave their loved ones alone. We are not there yet. So I'm grateful for what we have, and hope that I can properly prepare for what I know will be a continuing decline. For the few folks who have managed to find my blog, thanks for reading. It helps to know that we are all in this together.

Saturday, March 26, 2016

How Many People Notice?

Looking back, I can see there were subtle signs of cognitive changes as far back as 2002. Very subtle. No one would have noticed but me. At the time I dismissed them as a byproduct of a very high powered, high stress job that he had. But now I'm thinking it may have been a very early warning sign.

About 5 years ago, the signs were mounting, too hard to ignore. Confusion about the difference between a debit and a credit card, difficulty with finances. Subtle personality changes that were disturbing to me, but perhaps not noticed by others. This became the impetus for me to start planning for my own retirement.

Jim is in total denial about these changes. He insists that he has mild forgetfulness, "common for someone my age". He is mystified when I try to discuss the personality/behavioral changes; he just doesn't see it. I have read that this type of denial occurs often with some types of dementia, especially in frontal and temporal lobe dementia. It is characterized as lack of awareness and insight, caused by damage to the brain.

The memory problems are easy enough to work around. I'm always glad to help him "fill in the blanks" when he can't remember what something is called. Yesterday he was trying to describe arthritis; he held up his hands and wiggled his fingers and said "you know, when you can't do this". But the personality and behavioral changes are much harder to deal with.

My strategy is to keep things as even keeled as possible. This helps to reduce his anxiety, and thus his agitation. I'm still learning how to do this. Without insight into his own behavior, I don't see this getting any better.

I've not said anything to friends/family. Given Jim's total lack of awareness that there are problems, it doesn't seem fair to him. It almost feels like a betrayal. He certainly would see it that way. I asked him if I could go with him to his next doctor's appointment (routine appointment). He said ok, but only if I agree to NOT bring up these concerns that I have. He said that it would be misleading to the doctor, sending him in the "wrong direction".

My brother (the sibling I am closest to) finally said something to me about noticing changes, and it has been a relief to finally have someone to talk to about this.

I purposely limit our family and friend social contacts. Some of this is to protect Jim, and if I am honest about it, to avoid embarrassing situations. Jim managed to totally alienate one of our dear friends in our neighborhood. He became angry over a perceived slight. I tried hard, but could not convince him otherwise. He stormed over and gave our friend a piece of his mind.

Do others notice? I'm guessing that some do, and perhaps just don't say anything. I'll continue to try to keep the peace, for now.

Wednesday, March 23, 2016

Sometimes You Can't Win

Jim's internal thermostat is a bit out of kilter. He has an under-active thyroid, and takes thyroid hormone to help regulate. Unfortunately, even if blood levels normalize after starting medication, the body's thermostat can still remain a bit out of kilter. Jim's blood work is perfect, yet he still has problems with either being too cold or too hot, even when others around him are comfortable.

The biggest problem comes during hours of sleep. I've kept the thermostat at 73 degrees at night, as this is the temperature at which he seems to be most comfortable while sleeping most nights. Most mornings he awakes and says "I slept great! The temperature was perfect." But occasionally he will awake and say that he was too cold, or sometimes too hot. I then explain the rationale for keeping the thermostat at 73 (where he is comfortable most nights). He is not capable of adjusting the thermostat, by the way. He says he "let me take charge of it because I wanted to" (not true), but in the next breath he will say he doesn't understand how to adjust the thermostat.

His primary care MD has explained to him that there is no perfect regulation of internal body temperature once you are on thyroid medication. I remind him of this, but it doesn't seem to make a difference. He is focused on the fact that he slept way too hot (or way too cold), and wants to know what I am going to do about it! His brain has robbed him of the ability to remember these past conversations and discussions. His brain also has difficulty processing information when he is upset or anxious. So sad.

No win for anyone. He is unhappy, and I am unhappy that HE is unhappy! This is just one example of frustrating times, where rational discussion does not result in a good outcome.

I tend to be over sensitive. My goal is to keep him happy and content. This reduces his anxiety, and in general results in him being happier. And then I am happier! But sometimes it seems hard to do. I'm working on changing how I react internally to this type of conflict. I'm a work in progress....

Still lots of good times together. But sometimes the difficult times overshadow the happier times.

Tuesday, March 22, 2016

Cognitive Changes

There are still no effective treatments for dementia; how sad. The pills that your hear about on TV that reportedly treat dementia do nothing to stop the progression. Next time you see one of these ads, listen carefully. The ad will likely report that the pill improves the symptoms. It also says it does NOTHING to stop the progression of the disease. In other words, after a year or so on the medication, the control of the symptoms abates, and the person will find that their disease has progressed to where it would have, even if they had not been on the medication in the first place.

Reducing your risk factors that are within your control is important. Science shows that controlling high blood pressure, cholesterol, exercising, eating healthy, keeping mentally active are all things that can help to reduce the risk of developing dementia. But even doing all of this is no guarantee.

There is an interesting article in MNT (Medical News Today).

Essentially the article says that science has discovered on autopsy that those with dementia most often have a blend of several conditions, not just one disease process. There are several types of dementia; Alzheimers, Lewy Body, Frontotemporal, are some of the more common types.

It is estimated that 1 in 6 women and 1 in 10 men who live past the age of 55 will develop dementia. This sobering statistic suggests that most of us know or perhaps live with someone afflicted with this progressive condition.

The fallout from this disease process can be devastating. As we baby boomers age, we will see more evidence of this as our friends, loved ones succumb. It will impact on housing, caregiving, medical care and end of life issues for all of us.

As Jim would say, "one of life's little surprises"....

How about you? Are you impacted by this disease process in any way?

Monday, March 21, 2016

And so it begins......

I'm new at this. I've thought a lot about starting a blog. I enjoy writing; it's a great creative outlet for me. And at this point in my life, I see it as helping me to cope and adjust to life changes that are coming my way. Perhaps some of my observations will help others too.

My husband and I are both retired. My husband retired over 10 years ago and I have been retired for 4 years. When I made the decision to retire, I was in a career that I thought I would continue into my mid to late 70's. But I started to notice some changes. Jim (smartest person I knew!) was showing subtle signs of cognitive decline. Signs that probably only I noticed. I made the decision to retire, to make sure that we could enjoy retirement together now.

One of Jim's favorite sayings over the years, "one of life's little surprises", was used to describe both the good and the bad that came our way. A descriptive phrase that captured our sentiment when something occurred in life that was beyond our immediate control. Hence, the name of this blog.

Some details of what I write will be altered to protect Jim's privacy. He is not aware of the level of his cognitive decline. He sees the deficits as "part of the normal aging process".

We are headed home to the northeast in a couple of weeks. We have been fortunate to be in the south for the last 3 months. I will miss the warmth, the ocean, and the carefree feeling that comes from being here.

I hope to continue the discussion about life's little surprises, both the good and the not so good. And so it begins...