Whew – we did it. There were a few days I wasn’t sure we were going to make it, but we did and we had a wonderful time! We really, truly did. I can’t recommend this trip enough. Holland America is a fabulous cruise line and our travel agent, Go Forth Travel, did a marvelous job of keeping us in the right place at the right time.
M did pretty well on the trip. Being away from home and the disruption of his daily routine was an issue for him, as I had been afraid of. I found that if I warned him ahead of time and told him “tomorrow we’re going to be doing these three things, it’s going to take this amount of time and we’re going to be away from the ship from this time until this time,” he handled the day much better.
The toughest part of the trip was getting through security at the airport and then getting through the security scanner each time we came back on the ship. I didn’t realize M would have such a hard time with this process and wasn’t prepared to get myself through and coach him through the process. Once I realized what was happening, I handled it better and things went more smoothly.
I think the closest I came to having a breakdown was getting through US Customs in Vancouver. We had taken a bus from Seattle to Vancouver and had gone through Canadian customs with no problems. But, before we could board the ship, we had to go through US Customs – I don’t know why. The line was long, we had already had a long day and nerves were frayed. About halfway through the line, M decides he’s had enough and starts pitching a fit, raising his voice and letting everyone know that “THIS IS RIDICULOUS.” Okay, yes – it is ridiculous, but standing in line, waiting for US Customs to give us approval to board a ship that we have paid A LOT of money to get on is NOT the time to let everyone know that. If there were ever a time to just hush and take one for the team, this would be it. Of course, all my snacks and candy were in another bag and I didn’t have anything to try to make things better except the promise it wouldn’t be much longer. I still don’t know how we got out of there.
Mr. Grizzly Bear says “aarrgg!”
So now we’re back, well rested and on our regular schedules again. No more “all you can eat” buffets. No more room stewards making the bed and cleaning the room. I think I could get used to that kind of life. But I’ve learned that having M in a regular routine is very important. I’ve also learned that I need someone else with me if we ever travel again – having all the responsibility for him is too much.
So here we are – the day before we leave on our big trip. Yay!
I’m a little concerned, because it means taking M out of the comfort of his routines. He does better with routine, so I’m not sure how this is going to be for him. He seems to be looking forward to this, though, so I hope it’s going to go well. I say “seems to be” . . . he doesn’t get excited and enthusiastic about things like he used to.
I usually have at least one major freak out about an upcoming trip in the days prior to the event – and I managed to work that in on Wednesday. I got an email from the cruise line letting me know what time we were to board the ship and it occurred to me that none of the logistics and itineraries I had for the trip seemed to match up with the departure times and . . . there I went. Spinning out of control.
Fortunately, my travel agent is wonderfully patient and walked me through the entire process and I really do have everything I need. So, I’ve printed out every correspondence from her – including her phone number – and I’m set.
I don’t think I’ll do much in the way of “blogging” or checking in on this space while we’re gone. Wifi on the ship is pricey $$$ and I’ve spent enough. But, I’ll try to take lots of notes so I can report back on the funny stories that happen – because there are bound to be funny stories that happen!! – when we get back.
Sending all of you love and hugs – and many thanks for your support!
It’s possible I’ve found another “work around” that has reduced stress and made life a little bit easier. Yay!
I left M a list of chores to do when he got home yesterday – I asked him to run the vacuum and dust our bedroom. He also decided to cut the grass in the backyard. By the time I got home, he had done everything except dust and he asked if the dusting REALLY needed to be done. I asked if he had REALLY looked at our bedroom recently.
I have to say, he did a great job. He wasn’t so good about putting things back where they had been, but I went behind him and replaced everything and – between the two of us – we got it done in record time. Success!
I also made sure the dogs had water before I left the house this morning.
As he finished breakfast today, he put his plate in the dishwasher and I noticed that the plates were loaded backwards from the way the dishwasher rack is set up to wash them. And they were falling over. I asked them why he had the plates in there like that and his response was:
“It wasn’t me. I didn’t put them in there like that.”
Well, let’s see. These are your breakfast dishes. There are four of them there – one for each day this week, Monday through Thursday. You put them in there every morning. So who do you think did that?
I’m starting to learn – whenever he says “It wasn’t me,” you can bet it most certainly was him.
Oh! I knew there was news . . . I heard back from his neurologist on the Frontotemporal Dementia question. The results of his earlier PET scan show that is NOT the form of dementia that M has. Even though there are several similarities between the different forms and he is so young to have developed dementia, that is not the area of his brain that has been affected.
Yesterday was a really good day – work went well. I met a friend for dinner and had fun catching up.
Then I went home.
The dogs had no water and their bowls were completely dry. Everything from breakfast was exactly where I had left it when I left the house at 7:30 am. Nothing had been done. So I asked M, what have you been doing since you got home at 3:45 pm?
Watching TV.
We’re leaving on a two-week trip in three days. He’s done zero packing, washing, preparation . . . nothing.
Now, I’m not one of those people who will have their house spotlessly clean and the car washed and waxed before I go on a trip, but I would like to avoid it looking like a cyclone has gone through the place. And I do think it’s a good idea to have some climate appropriate clothes packed for this trip that we’ve been planning and have spent A LOT OF MONEY on.
So, I gave the dogs water.
Then, M took the laundry basket downstairs to the laundry room. And sat it there. I went downstairs and emptied it, separated the clothes and then brought the empty basket back upstairs.
I feel like I am constantly bitching about everything. This is not how I want to live my life. I want to appreciate every day. I want to appreciate the time we have together.
I just feel so overwhelmed – as though I’m sitting on a tiny little surfboard on the sand and a wave is growing bigger and bigger in front of me. It’s way over my head and starting to block out the sky. I’ve never had a panic attack, but I think I can understand the forces that would cause one.
I’m the oldest of five children and when I was growing up and my mom would get frustrated with us, she would say she was going to have a running, screaming fit.
Last night was a nice, quiet evening. Yay! M and I spent most of our time trying to get a head start on our packing for our upcoming trip.(The photo is of the Pacific Ocean – we get to see it again!!) The real question seems to be where I’ve hidden all my jeans and long pants in the 3-4 weeks since warm weather finally arrived? I know I’ve been trying to do some purging, but SURELY I didn’t get rid of those vital items!?!?!
The mystery continues.
M did really well until this morning, when I asked him to get a new supply of napkins for the napkin holder in the kitchen. He went in the pantry, then called back out to ask me where they were. I directed him to the cabinet where we keep them . . . where we’ve been keeping them for the past 10 years or so. After he left for work, I went back in the pantry and closed the cabinet door and turned off the light.
It’s the trail of where M has been.
I’m still waiting to hear back from his doctor, regarding Frontotemporal Dementia and whether or not this is what M is dealing with. It doesn’t make any difference, really. But I’d like to know.
I am totally IN LOVE with ordering groceries online.
There. I said it, and I don’t care who knows.
It was the most wonderful system I’ve ever seen!! When it was time to pick the groceries up, I hit the “I’m on my way” button on my phone, pulled into a well-marked and designated spot when I got to the store, and the team had them loaded in my car and sent me on my way in just a few minutes. IT WAS GREAT!!
And after a weekend in the car, with my dad driving and pouring rain, it was needed!
No, the weekend wasn’t bad at all. Friday, before M left for work, he asked (again) about our departure time and I was so glad I could point to the calendar where I had used highlighters and pens to color-code the calendar and make it bright and easy to read. I showed him where I had marked that we were leaving at 1 pm, so he needed to leave work at noon and I would see him back at the house about 12:30 pm.
At 10:16 am I got a text from him, asking where I was. He had left work at 10, thinking we were leaving town at noon. The only problem with that is – he is paid by the hour, so that’s two additional hours of pay he WON’T be receiving for Friday.
I told him I would be home at 12:30, as planned, for him to finish packing, but NOT to use grocery bags to take his things for our trip. He has suitcases – please use them. I don’t know why he will pull out grocery bags from the pantry rather than going up to the attic for a suitcase, but if I don’t say “DON’T DO THAT” he’ll do it every time.
As we were at the hotel, getting ready to go to our niece’s graduation ceremony Saturday morning, he started packing up his things, getting ready to check out. We were staying until Sunday.
As we left the arena when the ceremony was over, M needed to stop at the rest room, but the rest of our group went on outside to find our niece. I went on outside with them, so I wouldn’t lose them and was going to call M once we got to a meeting spot. When I called him, he snapped and said “I know where you are, I’m on my way to the car right now.”
Well, we weren’t at the car. It was raining. He was walking in the rain and he was going to be standing in the rain at the car and no one was going to be there for a while. But if he wanted to be unpleasant and stand in the rain and not listen to what I was trying to tell him, I was going to let him.
After about five minutes. we got to the car and got on our way to the reception. I started to tell him what had been going on and what I had been trying to tell him . . . but I realized there was no point. I was only frustrating myself.
When we got home Sunday, he asked me if we left home for our trip on Saturday. I reminded him that we had left work early on Friday to start the trip.
The 60 Minutes piece on Frontotemporal Dementia was eye-opening . . . and sad. If you didn’t have an opportunity to see it, you can look at the entire piece on 60 Minutes Overtime or on this link: https://cbsn.ws/2JkeNUu
M saw a little bit of the piece and said “I feel fine.” I’m glad – I want him to feel fine. But I want him to BE fine, too.
I left work yesterday, feeling so good and happy – it was GREAT! I took everyone’s advice (my brother, A, my co-workers and some of you here) and I went on Chewy.com and ordered supplies for my dogs. Boom! Free shipping and their supplements are on the way!
Then I went on Walmart.com and ordered groceries. We’re going out of town this afternoon for our niece’s graduation, so I scheduled the shopping to be ready when we get back Sunday afternoon. We’ll swing by, pick it up and it will all be done. Wow – it was so easy! The app even knew what we usually buy so it made suggestions and I just picked quantities. FABULOUS!! I’m going to schedule another one for the day we get back from Alaska, so we’ll have groceries bought that I didn’t have to schlep through the store to get. Boom, again!
And last night was better with M, believe it or not. When I got home from work, the laundry basket for our dirty clothes wasn’t in the bedroom, so I asked him to bring it up from the laundry room. He said it was full. I went downstairs and sorted the laundry into the baskets in the laundry room (whites, darks and mediums) and he said “I could have done that.”
Yep.
I just kissed him and took the basket upstairs and went on with whatever I was doing.
He started to drive me crazy with questions about our upcoming trips.
“When are we flying to Seattle?” “What time are we leaving tomorrow?” “What day are we going on the cruise?”
I can tell that getting out of his routine is starting to worry him. I also realized I’ve not done a good job of keeping our calendar up-to-date. So I got to work and updated the detailed calendar so he has all the info in front of him.
If you’re at home Sunday evening and looking for something to watch (and the Braves game is over!) take a look at CBS 60 Minutes. There’s going to be a story about Frontotemporal Dementia. I saw the preview and read a synopsis about the report . . . it’s as though the reporter had been in my house and was telling our story. Here’s a link to the preview: http://bit.ly/2GYlIRM
Yesterday evening started badly, and went steadily downhill. Went I walked in the door, M came in the kitchen and said, “Where have you been?” It was 5:40. I left the office at my usual time and had come straight home.
I looked at the clock and then looked at him and asked him what he meant. He said he had been looking for me to be home at 5 o’clock. That was my clue – right there – that things were not as they should be, but I missed it (I’ll never be a detective) so I stupidly and naively told him there was no way I could be home at 5 and went on with my evening.
I should have gone back to the car and driven away.
We went to the grocery store for a few items then I started making cookies for a family get together that’s coming up this weekend. Of course, right in the middle of the mixing, I realized I didn’t have enough oatmeal for the recipe. So I asked M to run back to the shopping center, go to the ATM and get $160 (some money for our graduating niece, some for this weekend and some to buy the oatmeal) and then get the oatmeal. I even took a picture of the oatmeal canister with his phone so he would know exactly what to get.
As I’m telling him this, he gets a piece of paper, says “one hundred sixty” and writes 100 . . .
I see what he’s written and I say to him “one – six – zero.”
It takes him a minute, but he gets it.
He’s gone for the longest time, but when he comes back, he tells me he couldn’t figure out the ATM, but he got the oatmeal.
At first, I thought I would take him back to the ATM and have a lesson in how it works. But then, I thought better of that. What’s the point?
Later in the evening, cookies are baking in the oven and I’m on the front porch, watering flowers. M comes outside to help, so I asked him to water the flowers around the mailbox and on the other side of the driveway while I go back inside to get the cookies out of the oven. This will involve attaching a second garden hose to the first to be able to reach the street.
When I come back outside, the hose reel box, which the first garden hose is connected to, has been disconnected from the spigot. The first (green) garden hose has also been disconnected from the hose reel box and M is standing in the yard holding the end of the green garden hose which has a sprayer attached to it and the wrong end of the second (gray) garden hose. Eerily reminiscent of the Christmas 2017 incident with the candles for the windows (see “The Beginning”.)
I didn’t lose my cool. I calmly told him to disconnect the sprayer and get the other end of the gray hose. Then connect the gray and green hoses together. While he did that, I reconnected the hose reel box to the green hose and to the spigot again and by then we were ready to water.
Finally we were back in the house and he opened the refrigerator and saw a package of strawberries that had gotten moldy (yes, we are one of those families that had let their strawberries go bad, just like that commercial!) and he asked if I had seen it. Yes, I had, I just hadn’t had a moment to do anything about it.
Then he asked if I wanted to throw them away.
I don’t know why that question was the one that set me off. It really shouldn’t have. All I had to say was “yes.” But, it was as though there was a red haze on the edge of my vision and I lost it!
No – I don’t want to throw them away. I’m going to start making moldy strawberry jam and moldy strawberry shortcake.
As you can imagine, that set him off and he threw them in the trash WITH A BANG, so I picked them out and sent the strawberries down the disposal and put the plastic container in the recycling (because that’s SO important!!)
Deep breath.
I went outside and called one of my brothers. No answer. Thank goodness I have four to choose from. So I went down the list and called the next one. He answered (I imagine he’s sorry now that he did.) and I just unloaded all of this on him.
I cried and told him (brother A) that I needed him to talk me off the ledge, but he told me it’s only one foot down, so I might as well go ahead and jump. Which made me laugh – as intended. As we talked about everything that had happened this evening, he pointed out that I had really done all of this to myself.
What?
Except for the time coming home, I’ve got to stop depending on M to do anything – he can’t do it. And that’s on me to change my expectations. And as A said, I have to look at all these things that we currently do and decide:
delegate it do it myself dump it – just forget about it
In this day and time, there are too many services out there ready, willing and able to help me with things that need to be done. I’ve been thinking for a couple of weeks now that I needed to get by Petsmart to get some things for the dogs. Duh – Petsmart has an online purchase option and they deliver. Even if it costs a little bit, it would be worth it to have it off my mind and done.
And I’m going to have to delegate. My dad has been nagging me for two weeks to get a flower arrangement put on the headstone at his parents’ (my grandparents’) graves. It’s important to him, but not important enough for him to do himself – he wants me to do it. I had an arrangement from a previous year in my garage and I had planned to get to the store to get new silk flowers for it. This morning I called my mom and asked her to take it (the current one with the faded flowers from the previous year) out to the cemetery and put it on the headstone. Now it’s done, I can get new flowers if I find the time, but no one will be nagging me about it.
This isn’t easy – and it’s only going to get harder. I thought this dementia progression was going to slow down or stabilize, but it sure hasn’t. I thought I was ready to handle things on my own, but I think it’s pretty obvious that I’m not there yet.
A did say, and this is also very true, that I need to stop worrying about things like watering flowers and baking cookies and I need to spend this time with M doing things like taking walks and going to ball games. I don’t think A understands how much joy both M and I get from my cookie baking – me in the baking and M in the eating – but I get the general idea. This is the time for making good memories. That’s what is important and what I need to be concentrating on. This having to work everyday is REALLY keeping me from living my best life. HA!
After the novel I wrote yesterday – sorry about that :\ – last night was much different . . . M and I didn’t see each other at all!
Our older son and his wife wanted to take their oldest son to see Avengers Endgame, so I went straight from work to their house to babysit for the younger two boys. You don’t appreciate how old you really are until you’re trying to keep up with a four-year-old and an eight-month-old. I know I did it when our boys were little, but I guess I eased into it – rather than getting thrown into the deep end.
Oh, they were fine and no trouble – just wanted constant attention – so I felt as though I was being pulled in two different (and opposing) directions the entire time they were awake. I was glad to see their bedtimes come up!
M was asleep by the time I got home (10:30 pm) so we didn’t get to talk until this morning. He said the dogs kept looking for me all evening. They had definitely been glad to see me when I got home!
It’s going to be a beautiful day here – hope your day is just as wonderful!
As Tee Smith said yesterday, I have to give M credit. Not only did he buy the cereal Sunday night (the Frosted Krispies), he actually took them back to the store and got Rice Krispies yesterday. Yay!
I wasn’t going to tell “the rest of the story” of Monday, but I’m trying to convey an honest story about living with dementia and how this disease is changing my life, my husband’s life and our marriage. So, here we go.
Yesterday, M had the day off work because he had worked Saturday. The plan was for him to get the boards from a section of fence we had torn down last fall out of the back yard and take it all to the dump. It was a tedious process, because all the worn-out, broken fencing wouldn’t fit on the trailer in one load, so it was going to take multiple trips. He and I had filled the trailer over the weekend so he could go first thing Monday morning.
When I got home yesterday, the trailer was gone (our older son uses it for his lawn service business and needed it by 8 am Tuesday) and M was watching TV. So, I looked out the window into the back yard and said “Is it all done?”
Wow. Big mistake.
He blew up.
“No, it’s not all done! Do you know how much wood is out there? Do you know how many trips I had to make, up and down the driveway? Blah, blah, blah” (He didn’t really say blah, blah, blah – I’m paraphrasing.)
I’m sure I was the picture of patience and decorum (I wasn’t) and went upstairs to change my clothes. I could hear him in the back yard – he had marched out the back door and had started sorting all the fencing into manageable piles for the next time we can get the trailer. Now, why he wasn’t doing that before I got home, I don’t know.
I got the harnesses on the dogs and took them for a walk.
When I got back, I saw that there were about 20 golf clubs lined up in the garage against the wall in front of where I park my car. I guess I didn’t see them when I got home. We have all sorts of golf clubs around, so I’m sure they belong to us. I just don’t know why they are there and when there was time to do that during the day. Actually, I think I do know the answer to that last one.
While I was out walking, I saw that a neighbor had put out some plants to give away, so when I got back home, I got in the car to go collect the plants (free perennials!!) Then I spent the rest of the evening planting them in the back yard. M was in the house – taking a shower, I think. Or watching TV. Take your pick.
When I came inside, we watched the Braves on TV for a while, then he went to bed – all without saying a word. I sat there and thought “Unpleasant people should be able to get themselves up in the morning” and thought long and hard about NOT setting my alarm for 5 am, but I knew I couldn’t do that.
Here’s what was so frustrating about yesterday – besides M and his short fuse. Before . . . before this disease started taking its toll, M would have worked like a man possessed to get that fencing taken care of yesterday. Nothing would have stopped him from accomplishing that goal.
Now, he’s complaining about the number of steps it takes, going up and down the driveway (he didn’t pull the trailer up the drive or ask a neighbor for help with that – even though we willingly help the neighbors, when asked!) and how heavy the wood is and how many boards there are. This just isn’t like him!
So this morning, the alarm goes off at 5 am and he jumps out of bed LIKE NOTHING IS WRONG!! He’s all over the fit he had yesterday and has no idea why I’m not happy with him.
One part of me wants to smack the ever-loving daylights out of him.
One part of me wants to laugh at the absurdity of the entire situation.
One part of me wants to throw up my hands in surrender.
One part of me wants to run far, far away and change my name.
But every part of me knows that I will go home tonight, put a smile on my face and go on. Why not? There’s no point in holding a grudge and trying to effect some sort of change in behavior. There isn’t going to be any change. Or not a change for the better, at least. There are going to continue to be changes. Changes I don’t like and am not ready for.
I hear myself sighing a lot lately. That can’t be a good sign.
