Hello

CMC62

I am new on this site and excited to have found a place where I can learn from those that have already gone through much of what we are dealing with.

My DH is in the early stages of Alzheimer's. He was first diagnosed with MCI in early 2022, but I did not learn about the diagnosis until June 2023. He misunderstood the initial diagnosis, believing memory issues were just age related. By 2023 I insisted on going to his appointment with him, as the memory issues had become more pronounced and felt like more than just forgetfulness. That's when we both learned about the diagnosis of MCI. I was furious at the doctor for not encouraging him to bring in his spouse, or send home some information, anything. After the initial shock, I insisted on a neurology consult and we went through the process of getting a more definitive diagnosis. In anticipation of taking the new infusion drugs he had DNA testing and discovered he has two copies of the APOE4 gene. A lumbar puncture confirmed the Alzheimer's disease diagnosis. We opted against the infusions, in light of the additional risks.

It has now been two years since we first learned about this diagnosis and the doctors say he is now in the mild dementia stage, but I sometimes feel like he is further along than we realize. He is 79 years old and has a wealth of cognitive reserves. Sometimes it feels as though he is fine, but then he won't understand why the paper plate cannot go in the toaster oven. Or he will forget what a swiffer is and bring me something else entirely. He spends a lot of time "reading" the newspapers, but I know he is just dosing off in his chair. He sleeps late when there is no morning appointment, sometimes until 2, and then can't fall asleep at night. Is this typical for the early dementia stage? He also walks incredibly slowly. Everything he does seems to take such great effort. Is this typical in early dementia?

SDianeL

welcome. Sorry about your DH diagnosis. Everything you describe is consistent with Alzheimer’s. He will have days or periods when he seems normal. The progression can have steps. He can also be “showtiming” where he can seem normal to others for short periods of time. Some things that will help: Read the book “The 36 Hour Day” which helped me after my Sh diagnosis. Search online for the 7 Stages of Alzheimer’s a chart that shows possible behaviors that arise during the stages. Keep in mind that the behaviors may not show up until a later stage and behaviors can overlap stages. Stages vary by person because of many factors including what part of the brain is affected by the disease. Make sure all your legal papers are in order: DPOA, HIPPA, will, living will, DNR, etc. Learn all you can about the disease and come here often for info and support.

Biggles

Hello and welcome SDianeL has given the best advice do take particular notice of all the legal matters it’s so important to make things run smoothly. This site literally saved my life when I was at a particularly low time, you can share good times and bad, get advice on anything and read how others are coping. Stay positive you sound good.

trottingalong

I would not consider what he is doing as early stage. I will say IMHO that the stage thing is difficult. It’s not one size fits all and I have also found behaviors that straddle stages. My DH would forget things now and then, sometimes get confused and then be perfectly fine. He was like that for years. He turned 81 late March. I’m 68. Now life is very confusing and complicated to him. He pretty much lets me do everything, because he does recognize his confusion and short term memory loss. He tells me often he’s getting like his mom, but at the same time looks for reassurance from me that he’s not. We don’t use the word dementia here, it would really distress him.

Marla13

My DH has the same problem with sleep. He sleeps on and off in his recliner chair during the night and sleeps until 1 or 2pm. This is not uncommon with dementia. Check with his doctor to see if he will prescribe meds that will help him sleep at night. Come back here often for good advice. These are caring and wonderful people who understand.

CMC62

https://alzconnected.org/discussion/comment/246249#Comment_246249

Thanks for your comment. I am also substantially younger than my DH, I am 63. I am not sure I could handle as much as I do if I was also 79. Like your DH, my DH also just lets me do everything. I was the one paying the bills and dealing with most financial matters even before the diagnosis, but he was still involved. That changed shortly after the diagnosis. He doesn't even want to know. He just says he trusts my judgment and lets me just do it all. Thinking back, we remodeled our kitchen about 2 years before the diagnosis and he just let me make every decision, which was not like him at all! I am guessing some of the confusion was already taking place back then.

CMC62

Thank you for your comment. We took care of all legal documents right away! I have ordered the book you recommended, and have several others I refer back to from time to time. The hardest part of this for me so far, besides watching my once brilliant husband disappear, is trying to plan for a future that is so uncertain. Will he ultimately need MC, and if so, for how long? Will that be 10 years from now, 5 years, or 2? How many years of memory care will he need? All of the unknowns add just one more layer of stress.

CMC62

Thank you. All legal docs have been taken care of.

CMC62

Thank you. I have spoken to his doctor and she suggested melatonin to start but he is resistant. Took it one night and had a bad dream, and now thinks that's connected. I will keep working on him.

harshedbuzz

https://alzconnected.org/discussion/comment/246262#Comment_246262

Hi and welcome.

I always believed my dad to be progressed further than anyone. My mom and his brother were in denial. His neurologists and geripsych only saw dad for a brief consult during which he would showtime*. Dad also came to dementia with considerably cognitive reserve. Additionally, mom was an unreliable reporter, dad did better-than-expected on the quick cognitive tests, and his language skills remained good until the very end.

I think you're the expert, here, as you live with him and are able to see the bigger picture as he goes through the day vs a 15-minute sit-down with

a doc at his best time of day

trottingalong

https://alzconnected.org/discussion/comment/246269#Comment_246269

I agree whole heartedly. You really need to be with them day in and day out. When my husbands sister and her daughter came to visit last year (from out of the country) she thought he was doing ok, though she did notice his detachment. What she didn’t see is him asking me at night who that other lady was (his niece) and why was his sister here. He told me he never could stand her, which was very untrue. They had always been very close and she’s a real sweetheart.

trottingalong

I say the same thing, I’m thankful I’m younger.

CMC62

https://alzconnected.org/discussion/comment/246269#Comment_246269

Thank you. It is sometimes hard to remember that I see things that no one else really can, even our kids. They are not here every day.

Timmyd

https://alzconnected.org/discussion/comment/246262#Comment_246262

I felt the same stress after diagnosis. Over the years I have learned to be more present in the moment. The opportunity for happiness still existed; I had to work to find it. "Comparison is the thief of joy". Spending time thinking about what you will miss is counter productive. For me that often means avoiding circumstances that remind me of those things. Our lives have shrunk significantly.

"Lean in on life! Learn to be very present. Silence the voice in your head and be here now. None of us are getting out of here alive."

The diagnosis resulted in less conflict in the house. Knowing the cause of the behavior made it easier to accept.

Regarding planning for MC and such, that is hard. I am a math person so I look at statistics. Of course there are outliers. Focusing on those outliers is a bad idea. Most people with ALZ who need memory care will stay there for a few years (2-3). You will hear stories of people who were in MC for 5, 10 years or maybe more. I do not see any value in focusing on that.

l7pla1w2

First, welcome. This site has supported the sanity of so many who despaired that no one understood their dilemma. Come back frequently. The group is supportive and non-judgmental and is a reservoir of extensive experience. No topic is off limits. It's probably more helpful than any single medical practitioner.

In my case, my DW suffered from anosognosia (see below), which made it impossible for me to get first-hand support, because my DW would challenge why I needed support. But I could participate in this group, and, because it's online, she didn't know what I was doing. I recommend this group to anyone who might benefit from it.

One thing that hasn't been mentioned yet is anosognosia. That's a condition where someone doesn't recognize they suffer from some condition, and it is not restricted to just mental condition. It's different from denial, where the person recognizes the problem and insists there is no problem.

Many people with dementia have anosognosia and are unaware of a cognitive deficit. I don't know whether or not your DH suffers from anosognosia. Either way, it's a mistake to point out his failings. Avoid correcting, arguing with, or trying to reason with him, anything that might lead to conflict.

CMC62

https://alzconnected.org/discussion/comment/246275#Comment_246275

I feel the same, that the diagnosis has resulted in less conflict. Prior to the diagnosis I just could not understand why my DH was not helpful around the house, would not plan even the smallest trip or outing, and generally did next to nothing while I was still working full-time at a pretty stressful job. Now I know, and understand it was not a choice he was making.

I also appreciate the statistics on MC. I am trying to just enjoy what we still can.

harshedbuzz

Continuing because of a tech glitch___

sit down with his doc at his best time of day after mom saw to his grooming and outfit.

That said, for the planners among us, this is a challenging disease to plan around. Given the age difference between you, you have the challenge of paying for his care while preserving assets for your retirement and potential care needs going forward. The other piece is that it is impossible to predict whether your LO will have a rapid or longer progression or whether an exit ramp will occur in the form of a cancer, heart attack or some other event. I had 2 aunts and dad with dementia at the same time. One aunt was diagnosed fairly well into the disease (she was showing symptoms for about 2 years) and died less than a year after diagnosis after a hip fracture. My other aunt showed symptoms as by 2002, was diagnosed in 2007 and lived until 2016. Dad lived about 11 years with symptoms. He progressed slowly initially, but the pace of progression picked up in the later stages.

I found DBAT useful for staging.

DBAT (4).pdf

Maru

https://alzconnected.org/discussion/73336/hello

Sorry that you have to be here, but I have found this group more helpful than any medical advice. Here are the day to day warriers.

My DH is somewhere between early onset and middle stage. As others have said, there really are no clear lines between stages, with over lapping behaviors and completely out of sequence steps. MY DH (age 90), once a member of Mensa, cannot follow a lot of plot lines of movies but is a master at Sedoku. Go figure. He has weeks go by of being "normal" and then he pees on the bathroom floor at night, or, like this week, stumbled through a disjointed conversation with an old friend who was visiting.

Probably the best example of out of sequence behavior was two years ago after being first diagnosed when he thought our great grandchildren were our nephews and niecess…Now he remembers who they are. Go figure.

I would just say, if everything is going smoothly and "normal" , REMEMBER that this is just a phase. Yes, he does have dementia and you are not just imaging things. Be as proactive as you can…waterproof mattress covers, solutions for toileting accidents, door alarms or such, and so on. Go with him to every doctor's appt as you cannot depend on him to remember to tell you.

Good luck. You can do this.

CMC62

https://alzconnected.org/discussion/comment/246283#Comment_246283

This sounds so familiar. Thank you!

Sandi Roe

https://alzconnected.org/discussion/73336/hello

OMG, you are living my life! I noticed about 4 years ago he wasn’t able to do things he normally could easily before. About 2 years ago our Neurologist did the DNA tests and he also has APOE4 from both parents. That kept him out of a lot trials, we did the PET scan for confirmation of Alzheimer’s disease, now in stage 4. He takes Donepezil 10 mg. I do think it may help 🤷‍♀️slowly he has lost so much. He no longer drives because he got lost once, he use to be a great cook but now when he tried he can’t remember what’s next or what he just did. Has left the stove on twice so I do all the cooking. He forgets to eat so I’m always asking, did you have lunch, I don’t know why I ask because he can’t remember if he did or didn’t. Sleep patterns are in the toilet, he wakes up all night and sleeps a lot in the day. Forget trying to follow a plot on TV. He obsesses over where are dogs are constantly. He shuffles when he walks and is very slow. He has some good days, but if the day is too long he really is so tired the next day. I never leave him alone at night, so now I’m a constant caregiver He is still nice most of the time. He will be 86 this year so maybe something besides this horrible disease will take him. We have been together 15 years, both widowed before, both are families are on board with the diagnosis. I am told it will only get worse, I know a lot of folks have so terrible experiences. So we just do one day at a time, we can continue to compare notes, hugs, Sandi

CMC62

https://alzconnected.org/discussion/comment/246364#Comment_246364

Sandi,

That does sound very similar. My DH is also very sweet, there is been no aggression at all, even when I know he must be frustrated. We try to use humor as much as we can. My husband and I have been together 34 years and yesterday he told me he thought it was remarkable that we have never really had a fight. Ha! That would have been remarkable if it were true! Nice thought though.

My husband is also on Donepezil but only 5 mg because the higher dose was giving him very vivid dreams that were upsetting to him and kept me awake. He also takes Mementine. I found a day program he enjoys and that has helped give him something to do while giving me a few hours of my own.

Would love to continue comparing notes. I have wondered about the impact of the double APOE4 gene as far as progression goes.

Cris