Living with an Early-onset Dementia Diagnosis
(Originally posted in Facebook on July 30, 2019)
I took M to a dermatologist’s appointment yesterday – he had a skin cancer spot on his face that needed to be removed. It was done with local anesthesia Continue reading “Let’s Meet Cousin Stacy for Lunch”
(Originally posted in Facebook on July 29, 2019)
When the phone rang at 9 am Sunday morning, I thought ‘who in the WORLD is calling me at this time of day?’ M and I were sitting there Continue reading “No Future as a Hood Ornament”
(Originally posted in Facebook on July 25, 2019)
Well.
M had his interview yesterday and when I asked him about it last night, all he could tell me was “everything was all over the place.”
I didn’t understand that, and as much as I tried to get him to explain it, that was all he could tell me. Continue reading “Change of Heart”
(Originally posted in Facebook on July 24, 2019)
Things are moving . . . things are happening.
M got a call earlier this week from one of the managers for the new area where he wants to work, inviting him to an interview today. Yesterday, he told his current boss that he had the interview scheduled Continue reading “What if it’s a Scam?”
(Originally posted in Facebook on June 6, 2019)
Two good days in a row! Wow – I almost don’t know how to act.
I have to admit, I’ve been out of the house for most of the evening both nights, so that could have something to do with how well everything has been going. It’s hard to have a bad day with someone you only see long enough to say good night to. And I’m meeting another friend for dinner again tonight, so it will probably be another good night.
But then, that takes care of all the “nights out with friends” I usually schedule each month – for some reason, they all landed during the same week this time. So the rest of June, we’ll have plenty of “together time,” when we can drive each other crazy.
This morning, as M was leaving for work, he walked out to his car and then asked me to hand him his keys from the key holder. I said they weren’t hanging there. His response?
“What do you mean, they aren’t there?”
Me: I mean, they aren’t there.
And neither one of us had the most pleasant tone of voice at 5:25 am.
Where were the keys? In his hand.
Now, people do things like that all the time. Run around frantically looking for their cell phone while they’re talking to someone on their cell phone, explaining how upset they are that their phone is lost. Search the house and office over looking for their glasses that are sitting on top of their head. It’s not a big deal to look for your keys that are in your hand – along with your lunch box, Ipod, sunglasses and a bottle of water.
I think we both need to work on having better morning attitudes.
(Originally posted in Facebook on June 3, 2019)
M and I had a plan for Sunday morning – we were going to get the kayaks out and FINALLY get them out on the water. We’ve talked about it for weeks, but we were actually going to make it happen. Hahahahahaha!
As soon as M stepped into the garage, he saw that my car (the one we use to tow the kayak trailer) had a flat tire. Sigh. It’s always something. Of course, it took all day to get that handled. M is a very handy guy and was ready to handle the repair – but that’s when the nerve-wracking part started.
To get the tire off the car, we needed to lift it up. It turned out that our older son had “borrowed” the jack we needed, so, M tried to lift the car with a much smaller jack we had on hand. Adding a brick on top of it. And some plywood.
Dangerous? Nah – whatever gave you that idea?
When the car started to slip off this “house of cards” M had created, I put my foot down and said – call the boy (he’s 31, but still) and tell him to bring our jack back here!!
He has always been very careful and not been one to take shortcuts. He would never have done some that dangerous before.
Fortunately, the two of them worked together (yay!) to get the tire off, M took it to the shop where they removed the nail I had picked up and patched it for ONLY $3 – I was shocked!! When he brought it home, he waited until older son and his family were at the house for Sunday dinner to put the tire back on. My nerves were much happier!
While everyone was at the house, but after we had eaten, my daughter-in-law showed me her mother’s day present – she actually got my son to willingly participate in a photo session with the whole family – and NOT give that cheesy “I’m hating every minute of this” smile he normally has pasted to his face. The pictures are beautiful and I can’t wait to get prints made to have around the house!
As I was looking at them, I told my d-i-l that M and I should get some photos done now, before . . . and then I burst into tears!! I don’t know where that came from – I always know when I’m about to cry, but this one snuck up on me.
Of course, I was going to say – before it’s too late. And it IS sad to think about. But I have thought about it. It is a reality I’m aware of. I’m hopeful something will change, but I have to be realistic, too. For some reason, it was all too much yesterday.
(Originally posted in Facebook on May 2, 2019)
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!
(Originally posted in Facebook on April 30, 2019)
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.
(Originally posted in Facebook on April 8, 2019)
Busy weekend. Being under the weather for the past week or so, M and I hadn’t gone grocery shopping since we got back from CA and the cupboard was looking pretty bare. My parents, our older son and his family were all coming to dinner Sunday night and we were watching two of our grandchildren Sunday afternoon, so we didn’t have time to get in a serious shopping trip – we only had time for one of us to run to the store and pick up the essentials for dinner.
So we put together a list for dinner and M said he would run to the store. The menu for the evening was grilled hamburgers so we were trying to put together a list of items to go with this dinner. M kept suggesting things like “lunch meat for next week” and “apple sauce for lunch.” I couldn’t seem to get him to understand that this trip to the store was ONLY for dinner and that we were going back to do our week’s worth of shopping after dinner.
On his way out the door, he looked at the list and saw hamburger patties. He asked me where in the store he would find hamburger patties. This is someone who has been to the grocery store as often as I have over our 35 years together.
This morning, as M was walking out the door to go to work, he realized he had forgotten to get his cell phone and his iPod, but he had his big lunch box on his shoulder. As he walked through the kitchen to get the rest of his stuff, M knocked a dish off the counter and it broke. It’s just a dish – it doesn’t matter . . . but it was one of my grandmother’s dishes. There were only three of them, and now there are two. Of course, he feels terrible about it and I know it was an accident. BUT STILL!!!! A friend suggested putting things like that away “for a while.” Wish I had done it sooner.
(Originally posted in Facebook on February 15, 2019)
Yesterday was Valentine’s Day and, although we’ve never been big on the candy and flowers celebrations, cards have always meant a great deal to M, so I make sure I get him at least one VD card to open. I have forgotten, in the past, and have been one of those cliche’ people, twelve deep in the card aisle on the big day, trying to find a card in the picked-over remains. I had a cute one, along with a little Reese’s peanut butter heart, so I knew he would be happy. When I got up yesterday morning, there was a card waiting for me. On the envelope, he had written “Happy Valentine’s Day! I love you!” On the inside of the card, he had again written, “Happy Valentine’s Day! I love you!” I smiled when I saw it, but when I recounted this to someone at work later, it made me start to cry. Not that I need my name or his signature on the card – we know who we are. But it’s just another sign that things are changing.
Earlier this week, I saw an elderly friend who lost his wife several years ago to Alzheimer’s disease. I had not seen him since we received M’s diagnosis, so I was glad for an opportunity to talk to him about where we were in the process. He told me that one of the first “symptoms” was his wife’s resentment of the time he spent in the morning reading the Wall Street Journal (about an hour and a half) because it took him away from her. He asked if I had noticed any behavior like that, and I said no – M doesn’t care if I’m reading or in another room.
But after he planted that idea in my head and I had time to think about it, I realized that I am seeing that same behavior . . . just in relation to different things. Earlier this week, I had to stop on the way home from work to buy gas and it made me later getting home than usual. M called me when I was almost in the driveway to ask where I was. I was only 10 minutes later than usual. If he’s watching something on TV that I’m not interested in or I want to be by myself for a little while (I value my alone time!!) I’ll go upstairs and turn on the TV in the bedroom. Ten minutes won’t go by before he’s up in the bedroom, watching TV with me. And I’ve noticed that, if I go to the bathroom, he will walk by the bathroom door to see where I am.
I really didn’t put all that together until my friend asked me about it – but, of course, now that I’ve noticed it, I’ll probably start noticing more things. When I realized all this, I felt annoyed and overwhelmed by how much M has taken over my life. But then it all just made me feel sad. He says he feels fine, that he doesn’t notice any changes and he thinks I’m over-reacting to tiny mistakes he makes. I truly hope that’s how he feels and that he’s not scared. I’d rather have him go forward, oblivious to what’s happening, than frightened by it