Even a Slow Progression Hits Milestones

Pat6177

I keep telling myself that DH is progressing slowly. And that may be true. But this past week, 2 things happened. First, we were at Culver’s and DH was eating a burger. There was a lemon wedge I had put on the tray. Halfway through the meal, he saw it, opened up his burger and squeezed lemon juice over the burger. I said, I’m not sure you wanted to do that. He said, of course I did, didn’t you see how hard I had to squeeze it. And he proceeded to eat the burger as if there was nothing wrong. Then a few days ago, he came into the living room and asked what my relationship was to him. Just matter of fact. Let me tell you, if I hadn’t been reading this forum for the last couple of years and been ready for that question, I would have really freaked out! Some days I think he’s not doing too bad and then these things happen and I come back to reality again. Which triggers the grief.  And the dread of what’s to come.

M1

Pat those relationship questions are especially painful.  Was happening frequently here before MC.  Interestingly, it hasn't happened at all since then.  She knows me and knows our relaionship consistently.  Now, she doesn't remember how we met or how long we've been together, but she knows me.

I'm sorry.   Yes, every little loss hurts and is cumulative.

mommafour

Pat6177 - My DH is experiencing a steep decline recently, after gliding along on a very slow path since he was diagnosed in 2012. It was shocking to hear the first time he asked why we were never married after all this time together. Then he proposed to me and suggested we go to Las Vegas. In reality, we have been married over 30 years. This happens a couple times per week now. He also has asked if I live in our house with him. I understand how you feel. It’s very sad. It’s bad enough when he doesn’t remember names of kids, grandkids, friends, but not remembering our relationship hits the hardest.

Ed1937

I can't imagine what that would be like. Only twice did my wife not know who her kids were, and that was temporary. I'm sorry.

Jazzma

I understand. My husband has been changing slowly for years, and the small milestones are a sad reminder of where we're going. The first time he got himself a bowl of orange juice and drank it with a spoon like soup. When he asked me what happens to the TV when we go to bed. It's easy to forget what's happening when he's mostly watching TV and napping. Lately he doesn't remember friends and family, and tells stories about when he worked with Mohammed Ali and Barbara Walters. It comes and goes. Take care of yourself.

JC5

It’s so hard to keep your spirits up when you see the unexpected or expected decline. DH was doing ok till a few months ago and even though it is still a slow progression it is still a shock when something does happen. Our daughter was here for Easter with her family , The Friday before Easter whole family all 3 kids 7 grandchildren and my SIL here for dinner Great time! Next day DH asked when will our daughter be here she must be stuck in traffic! I haven’t seen her in months ! Just took me off guard and chastised myself for stating the obvious to him! Keep learning and dealing !

PookieBlue

Nothing surprises me anymore, unless he has forgotten to put the toilet seat down. Then, I am unpleasantly surprised. However, then I’m grateful he he still using the toilet. You just have to laugh til you cry.

LJCHR

I understand where you are coming from. My DH had several good days and then the other night he came to me and said he couldn't remember where his pajamas were. I took him to the drawer and handed him a top, and he couldn't remember how to put it on. So I helped him with that. You feel thankful that you have had the good days, but 1 occurrence can diminish that feeling. And then the next day he was at his computer and turned to me and said "it looks like we are going to receive a nice social security increase." I reminded him that we did get one in January.

Joining the discussion group has helped me so much in dealing with the day to day. The article "The Calvary is Not Coming" was profound. It made me realize that I had to put on "my big girl pants" and deal with my DH dementia - that I was his main caretaker and it was up to me to provide the best care possible. Since joining this group, I have become stronger and more realistic about the disease.

I have been reading books and viewing videos about dementia soaking up as much knowledge as possible. I highly recommend any method to gain more knowledge about this disease.

I am terrified of what the future holds, but just try to make the most of each hour.

Best of luck to you.

Razduck

LJCHR,

Thank you for the reality check about our role. I’m new on here and trying to learn how to use this site, and hopefully learn something meaningful. I’m going to search for article “The Cavalry’s Not Coming” and look forward to reading it. I’m the primary Caregiver for my wife with Alzheimer’s. She is going to be given the best care that I can give her, even though I know I need help.

She was diagnosed in mid 2019 and was doing generally well until she had a pretty bad case of Covid. She has definitely gone downhill since getting well. Her memory has taken a big hit and she is easily confused, much more than she’s had before. Her neurologist says that he’s read clinical accounts from other doctors who report similar symptoms on patients with ALZ and Alzheimer like symptoms in non-diagnosed patients too.

Anyhow, thanks a lot, I wish you all my best wishes in taking care of your loved one.

Razduck

LJCHR

The Calvary is not coming was reposted on March 26, 2023.

My DH has constant UTI's with no symptoms other than fatigue. I can tell when he has one because his memory is worse than normal. I understand that an illness can affect negatively on the dementia.

I am also new to this discussion and find it very helpful to realize we are not in this alone. There is so much information in these discussions from people who have experience.

I have read several books written by people who have dementia and tell the story from their perspective. These have been helpful to me to try to understand what my DH is living.

toolbeltexpert

Pat I can remember when that started last year, dw asked if we were married she wanted to know if we had a marriage certificate to prove it. That was triggered by her seeing our wedding pictures. Which promptly got lost by her. I found them months later. I still get that question and proposals to get married. When I say sure she say REALLY. I just go with the flow. It is so slow progression,but one day she won't ask again and that loss will be final.

Palmetto Peg

It is sad when those "first time my LO did that" happen! Yesterday, for the first time, my DH made himself soup for lunch and left the burner on! I was out taking a walk, just trying to decompress a little, and when I came home I saw the flame on the burner. He was sleeping in his chair and had no idea. Now I have to add that to my list of worries, and it is just so sad. I know that soon I won't be able to leave him alone at all, and the very thought of that makes me panic! His progression seems to go slowly for a while, and then we have a big leap backward, and then that is the new normal for a while. This disease is so different for everyone, but this forum is so helpful!

eaglemom

I believe the phrase we all need to repeat to ourselves daily is: if you've seen one person with dementia you've seen one person with dementia. I was told that at my very first ALZ support group meeting, 11 yrs ago. At the time I didn't understand it, of course I thought I did!! Now, wiser and still learning daily I do understand it. Each one of our LO's is different and progress at different speeds. They can go along just fine and out of the blue we are surprised by something they've said or done.

Personally I try to enjoy the good and ride out the bad knowing good will come around again. Try to keep routine routine routine as much as possible because that is how he best operates. Some days you fall into bed overly exhausted & others days its just exhausted - I think each caregiver understands this roll is difficult.

Come here for support & idea's. To regroup, if you will, and have a fresh perspective. We all do get it.

eagle

Quilting brings calm

Pat, I totally get it.

When my step-dad did his 2.5 hour testing last fall, I was surprised that he landed in stage 4 because I thought he did well on the tests. I knew his behavior had been off, but I thought it would be MCI and a personality disorder. His symptoms are so different from my Moms. However I now think stage 4 is accurate. Two months ago he couldn’t remember that he had rotator cuff surgery several years ago even when he had an X-ray and the hardware was right there to see. He still can’t remember no matter how often he asks. He keeps saying the doctor told him there is shrapnel in his shoulder( he didn’t). Yesterday he and mom had doctor appointments, and blood work. Mom also got an X-ray. We get in the imaging center and he pulls out his insurance card because he thinks he is getting an X-ray too. I tell him he’s not. We sit down to wait on mom to get returned to us and he asks me if he’s getting called for his X-Ray soon.

He told the nurse at the AL he was going on a two week vacation. The nurse and staff panicked. I rolled my eyes. Meanwhile Mom’s progression isn’t progressing.

Another Day

I would be so lost without all of you here. Milestones - I'm pretty sure I hit one yesterday. I left DH for a little while by himself at home. When I got back he very proudly told me that he had checked the roof. Uh, think that qualifies as a milestone. My days of being able to leave him alone are about over. Thank God he didn't fall! Just to top that off, I hired a young man to come do some shovel work this coming weekend. DH demanded I "background check" him. DH does remember me still, I'm the one he constantly calls Hey _____

Paris20

My husband was diagnosed with AD about 8 years ago. His progression has been slow but steady. After a stroke, he had to move to a skilled nursing facility. That was almost a year ago, so for seven years I cared for DH at home, I found that whenever he showed a new behavior it was a precursor of more to come. I recall the first time he told me he had to call his parents. I was taken aback, but within a couple of weeks he asked about them frequently. They’ve been dead for decades. Dementia is the pits.

CStrope

I wanted to add that my DH started eating unusual combinations also......I realized that some of his senses weren't what they used to be. His sense of smell in addition to his sense of taste have been greatly affected. The other night we ordered a variety of street tacos, each came with a small lime wedge in the package. He chewed on one, spit it out, then picked it back up and actually ate it! I grabbed the limes from his other tacos before he devoured more of them.

Sandy1956

My DH has experienced a significant decline in the past few months. I’m not dealing very well. Feels like yet another, albeit expected, punch in the gut. I feel angry and almost paralyzed with hopelessness. How did this happen to us?! The same way it has happened to everyone on these boards.

“The Cavalry Isn’t Coming” is a bucket of ice water in the face. I put my big girl pants on every morning, but damn if they’re not down around my ankles by evening! And I get up and do it again the next day.

These boards bring incredible comfort but also fear. I feel the love and support and send it back to you all.