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.
What a beautiful spring weekend! M and I spent as much time as possible working outside in the yard. As he was cleaning up the backyard, in anticipation of mowing, he found a small animal carcass. Yuck!
He bagged it up and then asked me if he should put it in the blue (recycle) bin in the garage.
No.
So, I finally got some wide masking tape and made labels for the top and sides of the blue bin that say “Recycling Only” and “Monday Collection.” I don’t know if it will help, but I’m hoping.
Then he wanted to go to the grocery store last night to stock up on those little cups of applesauce – he was out of them and he eats 4 – 5 of them a day. It’s better for him than ice cream or something like that. Since he was going to the store, I asked him to pick up a box of Rice Krispies for me.
He brought back a box of Frosted Krispies.
This past week, we’ve both been trying to limit sugar in our diet. We haven’t been frantically reading the ingredients in everything we eat and swearing off anything that has sugar listed as one of the first ten ingredients, but we’ve been staying away from the obvious things like candy, ice cream, cookies, etc. I would say Frosted Krispies would be on the “no” list.
He said he’s going to return them today.
I know, eventually and sooner than I think, these are all going to become my responsibility. Either I’m going to have to handle them myself or hire them out. I’m just so accustomed to sharing them with M. I’m used to being able to ask him to do something around the house and him being able to handle it.
This really is a new kind of normal . . . and I don’t like it.
This video is only 1:47 minutes long, but so worth it. I wish I had a dollar for every time I’ve watched it . . . I’d be rich! It brings tears to my eyes, and it’s so powerful.
Hopefully, it will bring some power to your Friday, too.
Yesterday was SUCH a beautiful day, although very warm, so we took the dogs and went for a walk as soon as I got home. We tried a different route that had more sun than our usual walking route, but it was a shorter walk. One of the pups had a harder time in the heat and really seemed to be suffering when we got home – I was worried about her for a few minutes! She laid on her side and panted, but didn’t get any water for the longest time. I got some wet paper towels and tried to cool her off by placing them on her belly and feet – and then getting more cold water on them when they got hot. Eventually, she got her breath and drank some water and finally seemed to feel better.
I told M that I think we need to wait until the sun is closer to setting before we take them for a walk, if the temperatures are above 80 degrees. This little mutt is only three years old, but I don’t think she handles heat very well. Like her mother – ha!
We noticed it was looking dark in our refrigerator, but the light at the top was working. Finally, I pulled everything off the bottom shelf and realized there was also a light down there (how fancy!!) and THAT light had burned out.
When I got home last night, I saw that M had found the instruction manual for the refrigerator, had taken the light apart and had removed the burned out bulb – it was sitting on the counter. I was really impressed – this is the kind of thing he used to do all the time! I asked him if he had been able to replace the bulb.
No. We didn’t have any bulbs that size.
Never mind, he had just been to the drug store to pick up his prescription . . . which is right down the road from the hardware store, where he could have gotten a new bulb.
Then he asked me, “What size is that thing beside the house?” Me: What thing beside the house? M:The thing we bought the other day. Me: What thing are you talking about? M: You know, the thing we bought to cover the thing. Me: The tarp? The tarp we bought to cover the trailer? M: Yeah. How big is it? Me: I don’t know. What difference does it make? M: I’m going to take it off the trailer and cover the Jeep with it. The Jeep is getting those oak things all over it. Me: No you’re not. The Jeep is fine. Take it to a car wash and pay $5 to get it clean. Or we’ll buy a new tarp for the Jeep.
Keep in mind, the Jeep is 20 years old and we use it to haul the trailer. That’s it. Why he’s suddenly so worried about how it looks, I don’t know.
This past weekend, I planted zinnia seeds in our flower bed on the side of the house, as I do every year. But I needed two more packets of seeds to finish the job, so I asked M to stop at the store on his way home yesterday and pick up two more packets.
Imagine my surprise when I got home and there were 12 (yes, TWELVE) packets of zinnia seeds waiting for me. He said he thought that was how many I usually used. Well, yes – for the entire flower bed.
During dinner, we were talking about a friend from work and a trip she had taken last week. She was telling me about some of the passengers she had encountered on the cruise and I was trying to relay that information to M. He did such a spot-on imitation of one of the passengers my co-worker had told me about . . . I laughed so hard, I couldn’t catch my breath! He was HILARIOUS!!
It was almost as though the old M was back, for just a moment.
For a while now, I’ve been amazed, and a little concerned, about the amount of food that M eats. Of course, I’ve been trying (without success) to get him to eat a Keto diet. And I know it’s hard. I’m the one who scarfed down an entire pack of pink Peeps before 10 am yesterday.
I get it.
And I’m also aware that someone (a loving, caring someone) could be out there, right now, having these same thoughts about me. (I’m really concerned about the amount of sugar she’s eating . . . )
But last night, we had Easter leftovers – ham, fruit salad and homemade mac and cheese. Yum! And, of course, there was some left over dessert for when we had cleaned our plates. I watched M eat everything, but only about half of his mac and cheese – then he threw the rest away. Okay – that’s fine. He said he was full. Then he went to the pantry and got an individual serving container of apple sauce and polished that off. Then ate another. Then he decided he wanted a piece of the cheesecake dessert we had. Then he finished off the chocolate pudding in the refrigerator. After an hour or so, he had gone upstairs and gotten a bowl of ice cream.
Now this, I don’t get.
At his last neurologist’s appointment, he was over 200 lbs. which is the highest he’s ever been. But, of course, the doctor didn’t say a word. At his last GP appointment, his blood pressure, cholesterol and sugar levels were all borderline, so he’s going to be in trouble when he goes back – IN JUNE – and they’re worse. They’re going to want to put him on all sorts of medications and he’s not going to like it.
At the same time, I don’t want to be a nag. I’m not his mother. I want him to enjoy his food and be happy. I feel as though I’m walking a fine line – wanting what’s best and not sure how to get it.
Good days, challenging days. Blessed days, forgotten days. There are days that you want to remember forever and days that you really don’t.
Yesterday, I asked M to clean up some of the outdoor toys for the grandchildren to play with when they came to the house. I had gotten a bucket and sponge together and handed them to M, along with a bottle of dish soap and told him what needed to be cleaned.
M: Do I need to put water in here? Me: Yes, you’ll need water. M: Should I use hot or cold water? Me: It’s up to you. Do you want to clean the toys with hot or cold water?
He seemed very confused by the whole process, but eventually got the job done. Our grandson had a great time hunting for Easter eggs at the house and loved playing with all the freshly cleaned toys. Win!
Later, my daughter-in-law told me that my sons had talked to M about taking a guy’s road trip to Philadelphia for a Phillies baseball game this summer, but that M hadn’t seemed interested in doing it. WHAT?!?!
I talked to him about it later, after everyone had gone home and he didn’t say much. Just that he wasn’t sure about the time and that he knew he couldn’t miss work.
As long as it’s a weekend trip, these are the things he NEEDS to be doing now – while he can. I want to encourage it and I’m so grateful to our boys for thinking of it. I’m going to talk it up and do everything I can to make it happen. I think it will be a great thing and something the boys will always remember.
Had a GREAT evening last night. A couple of friends and I got together for dinner and it was a real treat to sit and laugh and tell stories and eat my weight in chips and salsa for an evening. I can’t tell you how much I needed some time like that. I was out later than I intended to be, but M did just fine with me being gone – he and the pups were in bed, watching a baseball game on TV when I got home.
As I was talking to my friends last night, we got on the subject of behavior and how people act and respond to each other. When you’re in a long-term relationship (like a 35 year marriage) you expect certain behaviors and responses. And they fall into two categories – acceptable behaviors and unacceptable.
As we talked more about it, we discussed M and his responses to things and events now vs. how he used to respond. It’s not that his responses are unacceptable if you define unacceptable as cruel or violent or mean. But his responses are not what I’ve been “taught” (for lack of a better word) to expect after all these years. So I’m caught off guard by his responses – or lack of response.
What I have to realize – and this is where I think I’m having a problem – is that he’s not going to change, so I’m the one who has to change the way I respond to him.
Intellectually, I know this. And when I’m well rested and calm and not hungry and not stressed and not hurried or anxious, it’s easy for me to respond to him in a calm and measured way. But how many minutes in a day am I feeling that peaceful?
Maybe ten?
Life isn’t like that. Life is hurried and flying by the seat of your pants and put together with spit and kleenex. And we’ve discussed how little (none) patience I have. And now I’m trying to change 35 years of my “natural” response.
Then we add to all this how unfair I’m still feeling it is. I’m still angry. I look around at other people . . . people who are drug users, alcoholics, serial marriage cheaters, wife beaters and I think why? Why was this wonderful, caring, kind man struck with such a horrible disease when all these other jerks are still walking around being jerks?
I used to think that when I died, the first thing I was going to ask God is why I couldn’t sing when I was here on earth. I love to sing, but I can’t carry a tune in a bucket. Now, I think I have bigger questions.
A situation I noticed, as things have been changing lately, is that things that were once important to M don’t seem to be that important any more.
The job that I have now, and that I’ve had for the past eight years, is 30 miles and roughly 35 minutes away from home. I don’t know why, but when I started the job, M decided that he wasn’t happy with me driving so far from home and he wanted me to text him when I arrived at work every day. It wasn’t a big deal, it made him happy, so I did it – just a “good morning, love you” text for the day. There were some days that would get busy the minute I walked in the door and I might forget, but generally speaking, I would text him every work day.
When M changed positions with his job last summer, he was no longer in a job that allowed him access to his phone during the work day. So, even if I sent him a text, he wouldn’t see it. And, of course, he never responded to any of the texts I sent, so I stopped sending them.
Then yesterday happened.
There is a prison about five miles from here. Most of the inmates are older or under medical care, so it’s a minimum security prison. Yesterday, one of the prisoners escaped and was spotted near our office. I sent M a text, letting him know our business was on lock down and that no one could move about on our campus.
His response: OK.
Now I know, he’s not supposed to be using his phone while he’s working and if I’m texting him, then he knows I’m safe. But I know how my husband would have responded eight years ago to news that my company was on lock down. And then I compare that to an “OK” with no follow-up when he had lunch or a break . . . I just had to smile and shake my head. It was another one of those differences I’ve noticed.
BTW – they caught the guy about 10 miles from here, on his way to his home town. He didn’t get very far.
