2 first times today, I start to panic

French

 Until now, when we saw friends, my partner managed to make up for it by putting a few thoughts into the discussion so that when I told them about my daily difficulties, they had a hard time believing that we were talking about the same person.

But tonight, some friends we haven't seen many times came to dinner. He already didn't recognize them and this is the first time he doesn’t recognize people and tell them. Although, I had explained him who will come several times in the day. Then, he spent his time repeating himself or making sentences that in the end had no information content or that he couldn't finish. My friends listened patiently and I feel that they were silently validating my difficulties.

When our friends left, he told me: they are nice but I don't know who they are.

That's it, I can't sleep. I feel panic.

Two First times today. First time that he doesn't recognize someone. First time that visitors see clearly that he is not right.

And this is not the only first times this week... twice I noticed he had forgotten  to wipe himself in the toilet... with the donepezil that tends to give diarrhea, It doesn't go unnoticed.

For several months, I had rather the impression of a gentle descent and suddenly, it is stairs steps as described by Crushed when I arrived in this forum. Even after having read a lot about all this here, I feel panic.

Bhopper

I have also recently had similar experiences the reality of declining understanding along with the bathroom issues that are becoming more frequent. I truly feel for you and situation we had lunch today with son daughter in law an grandkids fortunately she still recognizes by sight but gets lost or removes herself from conversation. Within 30 minutes afterwards she did not remember lunch. I am so sorry for your situation but please know you are not alone. We love who they were are are scared to imagine how tough it will get.

BH

CStrope

Because of COVID, my DH and I have not gotten together with his best friend and wife for over a year and a half.  We live 2+ hours apart, so we usually meet in the middle for lunch.

When DH was diagnosed during the past year, I had a nice conversation with the best friend, and filled him in on what was going on.  I had noticed my DH cutting phone conversations short so that the friend wouldn't notice the struggles, so I wanted to fill him in on why the discussions were now shorter and fewer.

So, last weekend we were supposed to meet half way for lunch.  I was skeptical because the friend had told me a few days earlier that he didn't really sense much of a problem with DH.  As he put it "he misses a word here and there, but we all do that".  I was actually really upset and hurt.  He obviously has no understanding of what is really going on.  Anyhow, the day came when we were supposed to meet up, and DH suddenly told me that he was going to call and cancel because his leg hurt!  

I think he began to realize that he was not going to be able to hide all the problems that he has now, especially with language skills.  Later that day, the wife messages me and asked "Is everything okay?"  I just wanted to scream.  I was really hoping that they would be a good sense of understanding and support as we navigate these dark waters, but they both obviously don't get it.  So.....who knows when/if the lunch will get rescheduled and ever happen!

French

CStrope, i really feel pain for you. Hopefully most of our friends are still there. 

2 of them (retired men) come every Thursday and bring my partner to their hiking club. This Thursday, they will go to restaurant after hiking. They know he has difficulties putting his hiking shoes or paying and they now help him. Before they didn’t want to search in his wallet, now they do it. When one is not there, the other does it. They haven’t been to the restaurant for long. This week they will see he often forget the knive.

One woman who was his colleague long ago often comes and invite him for lunch at her home. She has understood for long how he was able to hide is memory issues.

One other woman, who is his best friend when he was a child invites him one week once a year. 2 year ago when I did a burn out I asked her and she continues. Unfortunately she lives at 6 hours and this year has been difficult with the lockdown. The couldn’t welcome him at spring and it is why we used the respite stay at the memory care. They will do it in august. I wonder how they will manage. 

Ed1937

French, I wonder if it would be worth having him checked for a UTI? It's a very easy test for him. If you have one done, please ask for a culture to be run on it. This will give them the needed information on how to best treat it if there is an infection. It might not be an infection, but just think of what the payoff could be if it is one. Those symptoms could just go away after it is cleared up. I wish you luck.

June45

French, my husband "fell off the cliff" last August in what seemed like over a matter of days and he has continued to progress downward since then. (Prior to that, he had been on a plateau for over 2 years.) I did the UTI testing with culture but it was negative.  Sometimes that is just what happens. 

Regarding DH's friends:  Three years ago I called his best friend to inform him about my DH's diagnosis.  This guy had also been a work colleague of his for years.  His remark was, "I thought he seemed like he was losing it". Grrr. This "friend" is very much an "intellectual" (graduated from MIT) and I think it was too much to think that could happen to DH.  We haven't heard from him since that call and I crossed him off the list of "friends".

Crushed

Just to remind everyone there is the underlying Alzheimer's pathology and the symptoms.

As far as we know nothing stops the underlying pathology

Think of a city with lots of destinations and your taxi  has a GPS.  the utility company is digging up and closing the roads permanently.  For while the GPS can find a new path to the destination, since there are lots of streets. You can even get a faster GPS that works better and you can find the remaining paths.  But after a while it takes longer and longer as streets close and finally there are destinations you can never get to again.   Eventually you just drive the remaining streets at random and cant go anywhere.  Then finally  you are on a street and can go nowhere 

That's Alzheimers.

Jude4037

My sisters husband has had Alz for 9 yrs and I was very sympathetic but I didn’t get it. My husband started showing signs 7 yrs ago and there was no panic I thought I got it. But now I get it. His symptoms were gradual at first and I was prepared I thought but now I know no one is prepared for your partner to not be the person you fell in love with but a stranger. And once you think you have control of what to do it doesn’t work anymore. And well meaning friends who have never dealt with it give you suggestions of how to do things. This is a very difficult journey and no two people are alike or two days on your journey. 

In the beginning I would tell people things were progressing but they never saw it. My husband was always quiet and he could make small talk just fine. He still remembers people from the past but doesn’t know much from the last ten yrs or so. The signs are hard to hide now and they all can tell.

Some will say I know what you are going through my aunt had it or neighbor had it. Nope, they do not know and can’t unless they live it. They mean well. Its like being in a war, you can read about it, see the movie, but you really don’t know it. 

Jude4037

Very good explanation. Thanks Crushed for sharing that. Those streets are not smooth roads most of the time either. And ones you’ve never taken before.

CStrope

French I'm so glad that you guys have friends that still come around and keep their relationships in tact.  I wish I could say the same.  When I tell people about DH diagnosis, I get a lot of......Oh we're here for you....Call any time......I'll make sure to check in and make sure you guys are doing okay.....

Guess what, none of that happens.  I know it's only been 6 months, but these are the easiest months of this journey.  They obviously won't be knocking on the door when things progress.  It just really makes me sad.

M1

I'm sorry French, that's just starting to happen here too.  We really only have one couple we're close to, and my partner no longer can remember who they are.  They are the friends who introduced us, and they were here for dinner last week, and she told me yesterday that we haven't seen them in a long time.  No sense of time whatsoever.  Sad.  Today is my birthday, and she doesn't remember and hasn't said a word.  But I'm sure I'm not the only one who has been through that.  Special days of any sort don't mean a thing any more.  She's just angry at me today (again) because I won't let her drive to town to get more cat food (which we don't need).

French

Thanks Crushed, I like this analogy. Yes, I think it’s just a normal progression. There are always first times before it becomes usual.

On Saturday we will see the same friends for a canoe trip. We will see if he continues to tell them he doesn’t know who they are. We will also see if he is still able to paddle. If not, I will have to paddle for 2

Stuck in the middle

French wrote:

We will also see if he is still able to paddle. If not, I will have to paddle for 2

Be strong, French.  You already paddle for two in many ways.  In fact, "paddling for two" is an excellent simile for caretaking.

I know your fear.  I have felt it in the past week, realizing that one more light on the marquee has gone out.  We must be brave, even if we weep sometimes.

Iris L.

CStrope wrote:

  I was really hoping that they would be a good sense of understanding and support as we navigate these dark waters, but they both obviously don't get it.  

The general public DOESN'T get it.  Let them see.  Dementia is too much in the closet.  

Iris L.

Stuck in the middle

Remember the scene in Disney's "Alice In Wonderland" in which the path she walked was erased by a creature with a broom for a nose?  Darkness was falling, the path was gone, and she was lost and alone.  That scene was very distressing to me when I first saw it as a small child.  Now I have to watch it every day.

French

 Yes, I paddled well for two'.

like every day

The day started badly. As it was very hot, I had prepared Bermuda shorts instead of trousers. It disturbed him a lot. He came to see me several times in the kitchen with his underwear  to verify that it is what it was necessary to put, and he tried to put it over his pyjama pants. We finally got it right, I could see that the shirt was on the front by the back but it wasn't until We got to the canoe rental place with my friends that I saw that the shorts were on backwards with the pockets on the outside. Too late, he spent the day like that.

He got into the canoe upside down and once he was in the right direction, he was paddling upside down. We tried to explain to him, sometimes he would paddle the right way but it would only last 5 minutes. so after a while I paddled for two and he slept.

 I'm going to be sore tomorrow. But I still had a good day with friends and that's what counts. It had been so long since the last day with friends !!!

Stuck in the middle

A bad day on the river is better than a good day at work.

I am glad you had a good day.  I wish I had been there.