Where are we…..

hiya

My DH was diagnosed a year ago after several years of knowing there was a problem. They said he had a high IQ and mental reserves and that is why it took so long to show up. More often than not, he forgets who I am on an evening, forgets he is married. Every night he asks if anyone else is coming. He will explain where bathrooms and showers are etc. sometimes he knows he is in his house but doesn’t know where his house is. His short term memory is awful. He always dressed nicely but now wears shoes with holes. He likes them. He has lost a lot of weight. I read a lot about stages and feel he is a solid 4 beginning 5. His clinician says he is still mild stages. Can anyone tell me their experience with stages and if they’re LO acts similarly? I just want to know where we are so I can be prepared. It’s heartbreaking, especially moments of clarity when she says there is something wrong with my brain, help me. You are all going through so much and many worse than me. Just looking for help. Thank you.

SDianeL

My DH was also diagnosed 2 years ago but is about Stage 5 going into Stage 6. Stages overlap. Here's the best handout I've found that explains behaviors. It was posted by someone else. I printed it and as new behaviors emerge, I use it to communicate with the doctors. MRI gives the diagnosis but behavior tells the Stages. I would say your DH is moderate stage not mild but I'm no doctor. Did you read the book "The 36 Hour Day" It really helped me. Here's the handout on stages: https://tala.org/wp-content/uploads/2019/04/Tam-Cummings-LLC-Handouts.pdf

M1

Welcome to the forum. I would agree that not knowing you and not recognizing home are moderate if not late stage symptoms. Practitioners seem to have their own reluctance to face the truth sometimes. My partner also had high levels of cognitive reserve. But she is stage 5, and knows me by sight but not by name. I would bet your husband is stage 5 by the sound of it.

GiGi1963

My DH has many of the issues you describe. Every night he has trouble knowing who I am, where he is and it is a constant struggle to get him to spend the night. Doesn't know me or his home and thinks other people are either in the house or waiting for him at his real home. He lost over 20 pounds and does not want to change clothes anymore. Latest change is sleeping more. I think he is a six.

harshedbuzz

A couple of thoughts.

What you are describing is a PWD who has significant cognitive reserve. Sometimes such an individual can score pretty well on the quick'n'dirty screening tests like MMSE and MoCA well into the disease process.

My dad was one such PWD. His geripsych gave him a MoCA while I was in the room about 6-9 months before he died. He scored in around the MCI area for a man with his education. I would say, based on symptoms, he was a solid stage 6 but his psych felt he earlier middle stage. The doctor praised his effort and result, and dad bragged the entire was down the hall and in the elevator to the valet stand. While I handed over my claim ticket, dad got away from me and climbed into a car with some random little old lady who clearly didn't know what to make of dad. Dad was really into cars and this was not even the same model or color as his car.

There are two other factors that play into a disconnect for doctors and visiting family members. The first is that many PWD have sundowning (a period in the late afternoon/evening when they are more confused as symptomatic) and most doctors see their patients in the morning and earlier afternoon. When I made appointments for dad, I always tried to schedule for his best time of day to improve the odds he'd cooperate with me. The other thing that often happens is that a PWD can sometimes hold it together for a short period of time in certain situations. This is called showtiming. Dad could always muster an Oscar-worthy performance for his geriatric psychiatrist, even telling jokes in Yiddish. FTR, dad is of Irish-English ancestry.

HB

jfkoc

I wish there were a map. Unfortunately, there is none. There are known symptoms but your husband will have his own set.

In general his memory will fade as will his ability to self-start. He will become increasingly more dependent on you.

As behaviors arise come here and we will do some possible sharing. Ther will nothing you tell us that is new so please do not hold back.

You likely will want to run away more than once. You will be angry, frustrated and sad. We understand!!!

Stay close.....

-Judith

Iris L.

I dispute the business about high cognitive reserve inhibiting diagnosis. The doctors just don't know what they're talking about. Dementia is a diminution of cognition. Thus, if a PhD begins to function at a high school level, that can be dementia. The main thing to look for is a LOSS of function. Many doctors don't seem to understand this.

Iris