Posts

Posted on

Reality

(Originally posted in Facebook on March 28, 2019)

Here’s what I’ve noticed when I talk to our sons about their dad and his symptoms. I don’t think it’s that they don’t believe me or the doctors, but I do think they aren’t living with their dad all day/every day, so they aren’t seeing him and his actions and reactions the same way I am.

When we were in CA, I really noticed it with our younger son (A) and realized he was telling me the same things our older son (K) had been saying. Whenever M said or did something that I wanted the boys to note or notice as a sign or symptom of what is going on, A would say:

“Well, I do things like that.”

“He’s always done that.”

“You do that, too.”

I’m not going to argue them to the bone and force them to see things my way – there’s no point in that. One day, something will happen, just like it did for me over Christmas 2017, and there won’t be any way for them to explain it away.

And when that day comes, I don’t want to say “I told you so” or “it’s about time.” I want to remember to be grateful for their support and feel blessed that they’ve had this time in . . . is it denial? The land of “things aren’t that bad”? Mom doesn’t know what she’s talking about? That last one’s probably the most accurate!

I know they love their dad and they don’t want to believe this is happening to him. They have to know – I don’t want to believe it either.

Posted on

Amazing Trip

(Originally posted to Facebook on March 27, 2019)

Whew!

After days of sitting in airports, running for flights, hiking, walking, eating (lots of eating!!), riding, touring, shopping, talking, exploring and never getting used to LA traffic – we are home!

We had a WONDERFUL trip to California to see our younger son and it all turned out very well. We each got to do some of the touristy things we wanted to do while we were there, so we had a good time.

I finally had an opportunity to talk to our son about M and his diagnosis face-to-face. He took the news better than I had expected, but he had been living at the house until May 2018, so he had seen what was going on until that time.

I did stress to him that this diagnosis is not to change his career plans AT ALL. I don’t want him to decide that he needs to come home and “take care” of us. The best thing he can do to take care of his father and me is to continue on the career path he is on right now and get all the education and training he can. Take advantage of every opportunity that comes his way to learn and to grow in his field – THAT is what will be most helpful to us.

M did very well on our trip. There were moments – as there always are – but on the whole it was a good trip. There were a couple of hiccups on our return trip and those seemed to throw him for a loop, but he did pretty well.

We had to get up at 3:30 am Pacific Time, to catch our flight out yesterday and didn’t get home and settled until after 7:30 pm Eastern Time – which made for a LONG day. M decided that he wasn’t going to go to work today because he was tired. Of course, he wouldn’t get paid for this day off because he has used all his paid time off, so we had to have a conversation about that. I understand being tired – I’m tired, too. But I suggested he get a good night’s sleep and get on in to work today. He went in – I just hope he stays all day.

Posted on

Recurring Dreams

(Originally posted in Facebook on March 20, 2019)

We’re sitting at the airport, waiting for the first flight of this journey. I understand the “why” behind it, but air travel has become such an exercise in humiliation. After my full body scan, I got to have both arms and shoulders examined “up close and personally” by a TSA agent – which was fun for both of us. Sigh. This is when I’m looking for the Jetsons and my flying car.

Last night was a trial – that’s all I can call it. Trying to get packed and keep things light and breezy was almost more than I could do. At one point, M started a panicked search for his shaving kit, which took him all through the house. He finally found it in the kitchen.

Now, that does make sense, because when we’re going on car trips – say, to the beach – the packing of the car is launched from the kitchen. But we’re flying for this trip, so I told M to bring the kit upstairs so we could pack it.

Well, THAT didn’t make him happy. Then I pointed out he had a full size tube of toothpaste in there, which would probably get tossed. As you can imagine, things just got more and more tense.

We eventually got things back on an even keel, after a few tears on my part and some hugs.

One of my few recurring dreams involves a huge wave of water looming over me. It’s just off the beach and it’s so big that it’s all I can see, no matter what else I’m looking at on the shore. It never takes me down or drowns me, but it’s always there. 
This photo is from the Clark Little Gallery Instagram page. Follow them!

Posted on

Stick to the Plan

(Originally posted in Facebook on March 19, 2019)

Routine. As boring and dull as it sounds, for someone dealing with the challenges M is facing, routines are a very good thing. He depends on his routines and I forget that. I can take changes in stride and it isn’t that easy for him.

We’re leaving tomorrow to visit our younger son in Los Angeles. We’re both excited and looking forward to this visit – we haven’t seen him since Thanksgiving. But traveling is going to be a change from our daily routine and I am beginning to see how this is throwing M for a loop.

Last night, when I got home, I suggested that we start gathering our clothes together for the trip. I wanted to make sure we didn’t need to get any laundry done before we left and to try to avoid those “I forgot to pack underwear” trips to WalMart that I’m famous for when we land.

M was great, getting his outfits together, but then he turned to me and asked, “Are we leaving tomorrow?” I assured him we were still leaving Wednesday, that I was simply trying to get an early start on our packing.

Later in the evening, he asked what time we needed to leave for the airport. As we talked about what time the flight was leaving and how early we should get there, he said that I would need to call his boss, Ashley, on Wednesday morning and let her know what time he would be leaving work.

What?

We went back and forth a couple of times with:
“What are you talking about?”
“What are YOU talking about?”
Before I finally stopped and asked “Don’t you have Wednesday off work? You told me you had asked for this time off.”

He thought about it for a few seconds, then his face cleared and he said, “Oh yeah. That’s right. Never mind.” And that was the end of it. He assured me that he DID ask for the time off to go on this trip and that there was nothing to worry about.

There’s a part of me that wants to believe him. And a part of me that wants to check behind him and make sure he’s taken care of this with his boss. I honestly feel as though I’m between a rock and a very hard place – and I’m not enjoying this AT ALL!

Posted on

That’s Not How This Works

(Originally posted in Facebook on March 18, 2019)

There are a couple of ways in which I am very envious of my husband. He has never had to be on a diet in his life. Never. I, on the other hand, feel as though I have spent my entire adult life on one diet plan or another.

So now, when we’re at a point in his life where we’re trying to manage his diet – not just to affect his weight, but to impact his health – he doesn’t have the experience I have had to get him through this process. Let me explain . . .

My understanding is, with the keto diet, you have to eat a high protein, low carb diet to force your body into ketosis (using fat rather than carbs for fuel) and it takes about three days for this to happen. If you cheat and increase your carb intake, by eating sugar or bread, then your body comes out of ketosis and you have to start the process over again.

I’ve tried to explain this to M, but he still thinks it’s okay to cheat, as long as he’s “mostly” eating a keto diet. But that’s not how this works – that’s not how any of this works. He was telling me Saturday that he had accidentally put $10 in a soft drink machine at work, rather than $1, so now he had a credit in the machine. He couldn’t understand why I was focusing on the fact that he was buying a soft drink . . . and the fact that he now had a credit to get 9 more.

We’re traveling, later this week, to see our younger son in California. Last night, M asked me when we were leaving and I told him Wednesday. Later, he asked when we were coming back, and I said Monday. He said, “Not this week.” I told him no – Monday of this week was the next day (when we were talking,) so we would be coming back Monday of next week. A friend suggested I get a big calendar and mark all the upcoming dates and events on it and I need to do that. Maybe it will help.

Posted on

Say What?

(Originally posted in Facebook on March 15, 2019)

I think we’re ending this week on a pretty positive note – even if it’s raining. AGAIN!

Yesterday, I needed to stop on the way home and buy gas, so I decided to be proactive (managing expectations!) and I called M as I pulled into the gas station and let him know what I was doing. That went well. I got home a few minutes before 6, but he knew what was going on and everything was fine.

He and I spent most of the evening in the yard, planting flowers and cleaning up yard debris from over the winter. He’s always taken a lot of pride in keeping our yard neat and looking good, but it seems to have gotten ahead of him this year. It could be all the rain we’ve had or it could be that he hasn’t paid attention to it. We’ll see.

The only issue that I’ve noticed is that he almost ALWAYS asks me to repeat anything I say to him. I’m not sure if he REALLY doesn’t hear what I’ve said or if he’s stalling for time to think about it, but I’ll say something and invariably his first response is, “huh?” I have a pretty loud voice, and no one else is asking me to repeat what I’m saying, so I don’t think I’m talking quietly. He swears and declares he gets a hearing check at work and that he passes it every year with flying colors . . . I’ve never believed THAT, but he says it’s true. He’ll see the neurologist again later this month – I think I’ll add this to the list of things to discuss.

Posted on

Where Are You?

(Originally posted in Facebook on March 14, 2019)

It’s a beautiful day around here – spring might be here to stay! (Watch it snow next week – ha!)

Yesterday, I was on my way home from work when the phone rang and it was M, wondering where I was. I’ll admit, I had stopped by the store on my way home and was 10 minutes later than normal, but not excessively late. There are one or two evenings a week I’ll stop for gas or to pick up an item or two on the way home, so this isn’t out of the ordinary, and I’m never later than 6 pm getting home.

When I got to the house, I asked M about it and he said:
“I was worried about you – you should have been here by 5:30.”
Now, even if I walked out the door of my office EXACTLY as the clock chimed 5 pm, there is no way I could make it home by 5:30. It’s a 35 minute drive, door-to-door.

So, we talked about his expectations of when I should be home and the reality of when I can actually get there. I think I’m going to have to post a note that says something like “Don’t worry until AFTER 6 pm.” I appreciate that he cares, but I hate that feeling that I’m racing home to beat his internal clock.

We attended the neighborhood meeting last night, which went well. He was engaged and attentive. My mom came to the meeting with us and, when we drove her home, he walked her into the house and made sure she got in safely, which I thought was very kind. He has such a good heart and is the sweetest man I know. I’m so grateful that this part of his personality hasn’t been lost.

Posted on

Who Can Take a Nothing Day?

(Originally posted in Facebook on March 13, 2019)

Yesterday was a good day!

There have been some disturbing incidents happening in our neighborhood lately and a neighborhood watch meeting has been scheduled for tonight, so M and I drove around for about 30 minutes, after I got home from work, posting flyers about the meeting. Then we went to our son and daugther-in-law’s house to babysit two of our grandchildren while the oldest one had baseball practice. I can’t believe they’re practicing this early in the spring! (It’s not even spring yet!!)

And it was a really good evening! M was engaged and focused the entire time. He interacted with both grandchildren, read to the 4 year old, played with the 6 month old, watched TV without music on . . . it was all good stuff! Nothing extraordinary – but extraordinary in its normalcy.

I would LOVE more days like this.

Posted on

Keto Diet, Anyone?

(Originally posted in Facebook on March 12, 2019)

I read somewhere, recently, that dementia and Alzheimer’s disease are starting to be thought of as type 3 diabetes. Type 1 diabetes used to be called juvenile diabetes – that’s the type that seems to start mainly in young children whose bodies don’t produce insulin at all. In type 2 diabetes, your body does produce insulin, but doesn’t seem to be able to use it effectively.

And then we come to dementia. There are so many things NOT understood about what happens in the brains of dementia patients, but diet is thought to be a contributing factor. Could it really be type 3 diabetes?

We’re still trying to keep M on a keto diet – or, I should say, I am trying to keep M on a keto diet. I don’t think he’s trying, at all. He willingly eats whatever I put in front of him, but then he goes behind my back and eats whatever he wants.

Yesterday, he said something about having forgotten to put the ice packs for his lunch in the freezer, so last night, I looked in his lunch box to make sure the ice packs weren’t in there. They weren’t – but there was a whole bag of candy in there.

Now, I can’t really say much. I should be eating a healthier diet. Summer is just around the corner – and I had a bag of powdered donuts for breakfast. I know, I know. I’ve GOT to get out of the “comfort food” mindset. Somehow, walking five miles isn’t nearly as comforting as a cup of hot cocoa. With marshmallows. And chocolate sprinkles.

But let’s get back to M – I’m trying to get his BRAIN healthier. Last week, one of his brothers sent me an email with some dietary changes, like adding green tea and carrots, recommended for dementia patients. He’s onboard with the green tea, but he gave a big THUMBS DOWN to the carrots. Sigh. I guess we’ll take this in baby steps.

Posted on

Check Behind Me

(Originally posted in Facebook March 11, 2019)

What a crazy, busy weekend! I don’t care what anyone else says – I will miss that hour of sleep until we get it back in October. I understand all the hype about it being daylight later, but it was so dark this morning, it really messed up the start of the day.

A part of our work this weekend was to continue our de-cluttering efforts. We’re starting to see real progress and I think that makes it seem even more worthwhile. There were several little things that happened with M over the weekend – nothing major – but just little bumps in the road that remind me of the long road we’re on.

As we were finishing up one of our cleaning hours and were putting things away, I handed M some coins we had found and asked him to put them in a piggy bank we have on the counter of the kitchen. Later that day, I found the coins sitting on the kitchen counter, about three inches from the piggy bank.

On the same day, we also found a stack of note pads and I handed those to M and asked him to take them to the den because we never seem to have anything to write on when we need to make a note in the den. I later found those note pads in the kitchen junk drawer.

M was working on the laundry and we ran out of detergent. He found me to tell me and I told him that I knew we had run out, but that there was a bottle of liquid Tide on top of the dryer (we normally use Persil.) He asked if it was okay if we used Tide.

Again, none of these things are dangerous or major incidents. No one is hurt by them. But they show me that I need to check behind him on just about everything he does – which gets to be exhausting! He got frustrated trying to put gas in the car, fussing about how the machine wouldn’t take his card, but the problem was him. The machine was asking for his zip code and he was entering his four digit PIN code.

I know there aren’t any easy answers. I’ll just keep looking for blessings and miracles where I can find them.