Everything is perfectly normal...maybe not

Maru · November 1

Just feel the need to "talk". DH in ES to MS Alz. He has seemed perfectly normal now for about two weeks. You'd have to live with him and pay attention to know anything was off. Well, there is the thing about needing to explain to him who is who and what that all means when we are watching TV and the thing about misnaming people in his stories, but he did misremember some of our shared history and other things too insignificant to mention. It is times like this that I forget he has ALZ and question the diagnosis. Some days he has all his words, then other days it is full of looking for the words and saying, "that thing that does ___, and You know what I mean." No, I haven't a clue what you are talking about.

Normal? not normal? Is there any such thing as normal in this process? Really, for either of us. Do other spouses/life partners go through all this kind of doubting about the diagnosis.

Stan2 · November 1

I wouldn't say I am doubting the diagnosis but my DW is behaving in such a way now that anybody who did not know her well and live with her would notice anything wrong. There are however, many subtle and not so subtle hints that something is wrong. Her short term memory is basically non existent, she lives in the present with no sense of past or future. Simple math is totally beyond her, she can't follow written instructions. There is more but you get the picture . There are times, however that I too forget that she has ALZ. then I remember that I have to do all the cooking and cleaning, all the shopping and planning. I have to dispense her meds for her and make sure she gets regular meals and rest. My guess is that you and I both will have less reason to "forget" in the future and need to enjoy our LO's as much as we can now.

trottingalong · November 2

I’m in the same boat with my DH. As long as our simple routine stays the same, he does ok. But his short term memory is pretty bad and his ability to understand simple conversations is disappearing. I think he’s watching and enjoying a movie on tv, and then he says he doesn’t understand a thing that’s going on. His sister and niece came to visit who live outside the country. He never could remember that ladies name (his niece) and after they left he said he never liked his sister. He always loved his sister. To them though, he didn’t seem that bad. His sister said he just seemed a bit disinterested. It’s a confusing roller coaster of one day everything seems normal and the next it’s not.

Grandot · November 2

I signed in tonight because I’m going through the same thing and I’m so frustrated and tired. Some days he seems so “together” and other days he can’t seem to remember anything. His short term memory is very bad; therefore I have to remind him more or make suggestions. He is beginning to resent that. My DH has the television on much of the day with the sound off - just staring at it. When we do watch a program he often doesn’t understand it. Some days he can do certain things and other days he can’t. Adjusting to which day it is is a challenge!

SDianeL · November 2

yes. Part of it is no day is the same until the disease progresses. Part of it is our denial which is a mental safety mechanism. I never doubted the diagnosis but had denial over how bad it was. I started keeping a list of my DH behaviors to send to his doctors at least monthly and was shocked at how long the list was. I also sent the list to his daughter who lives in another state. Another thing is that when you are caring for someone you focus on the moment and don’t really stop to see the big picture. The list I kept forced me to face it.

Maru · November 2

https://alzconnected.org/discussion/comment/227195#Comment_227195

I know that there will be a day when all semblance of normality will be gone. Just knowing that I cannot depend on him to remember to take meds (although he mostly does) or remember to close the garage door or lock doors at night, or floss or do any of a thousand things ought to be enough to make this seem real.

Ty for the reminder that DH just because DH still remembers who I am doesn't mean he doesn't have ALZ.

Maru · November 2

Similar thing with watching TV. He seems to be enjoying a program then the questions start. I have started narrating as the program goes along…although I cannot be sure that the words I say are understood or even that he was able to understand because of the higher pitch of my voice. Teepa Snow has a really good video on the whole hearing and understanding aspect, available on Youtube.

Maru · November 2

https://alzconnected.org/discussion/comment/227215#Comment_227215

I do write the changes that I see and events as I remember them, but some of it is so subtle and some of it was going on for so many years before he was diagnosed that it seemed normal. For the past nine years we just thought it was the normal aging brain. He had been telling me for the past couple of years that he just couldn't remember things but I wasn't concerned because he was 87.

harshedbuzz · November 2

My mother felt as you describe @Maru

I don't know if it was that he was calmer so long as his routine (and 100% of mom's attention) wasn't interrupted by my visit, or if she was so close as to be the frog in a warm pot of water set to boil, or if loving wifey-goggles obscured what was obvious to me.

You may not be aware of the level of support and scaffolding you provide to allow him to present as well as he does. In a way, it means you're giving him what he needs.

HB

Belle · November 2

I have thought about writing a similar post this week because DH is walking/talking/using the phone and seems somewhat functional. If I'm tired or needing to find time to do something I need I think I convince myself he's 'not that bad' so I can carry on and address those things. Of course he's the same guy who is peeing in a cup and dumping it in the sink, needs reminders to shower, and hasn't cut his hair or trimmed his beard in months.

Maybe our type of temporary disbelief is a survival mechanism? Having to do everything because DH cannot do much successfully is exhausting. I'm tired now and if I think about having to do even more in the future I believe I'd either have a breakdown or run away.

Maru · November 2

https://alzconnected.org/discussion/comment/227236#Comment_227236

I think our 5 kids all knew something was wrong beyond normal aging before I did. It took a completely made up word to make me sit up and say "hey, this isn't normal". I was definately the frog in the pot. Very apt description.

Maru · November 2

https://alzconnected.org/discussion/comment/227239#Comment_227239

Belle, i know the lived experience of peeing in a cup and dumping would be shocking to me, but just wanted to say that it made me laugh out loud. And, I know that that might be going to happen here someday or something similar. I'm just hoping that if and when it happens I will remember your note and laugh instead of crying or getting mad….Reminder to self….NEVER, EVER get mad at him. NEVER.

My DH can do a lot of things and for his dignity he needs to do them. But, some of it has to be re-done without him noticing.

Whyzit2 · November 2

I think we become so use to how our LO behaves that it becomes more normalized in our own mind and we just roll with it. My DH has been attending daycare for several years and I never visited it until this week. DH behaved like a seven year old blurting out silly comments and being the entertainment for the group. The leader told me they love him and he is always a spirit lifter and that is how he always acts. He never acts like that at home. I was also amazed that every day the leader lists their names on the board, asks each where they were born and their birthday. They also take turns telling about their work life and family. Can my DH tell me any of their names? Nope! It was a real wake-up call for me as to his level.

Everything is perfectly normal...maybe not

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