Alzheimer's Progression is not Linear...

LauraCD

So anticipating what might be needed or how to respond/care is so difficult. My husband has been diagnosed since 5/2023 with Alzheimer's which was certainly happening well before that. In all the research, and support groups, and meetings, and readings, and doctor's visits, and clinical trials, I've been navigating dizzily I see that the progression does not evolve in any particular order.

My husband, for example, is well aware of himself and what is happening. He is not in denial = worse = he is in an ever downward spiral of deep and agonizing depression (and anger) for knowing what is happening to him. I have written before about his temperament which is more the exacerbation of his own less than positive personality traits. With that in mind, I find the "advice" that is provided as a standard with regard to dealing with agitation/aggression simply not applicable for me. For example: the first rule is "don't argue." I don't, he does, invariably on everything and there is no way that I can imagine of fending off the increasing aggression that develops with any small instance. The advice continues with: "distract." He is not that far gone. There is no way to distract him from the perceived problem he is focusing on. He has the capacity and the wherewithal to understand exactly what is going on. His arguments aren't rational and sometimes border on paranoia but he cannot be diverted from the perceived issue he is distressed about. Apologies mean little except more fodder for his diatribes.

And as I have expressed before this is all so withering. I suppose there are no answers right now as we (he and I) seem to be in this purgatory of a state where the advise, support and resources available are really for someone that is further along in the disease. In the meantime his abilities continue diminishing. Recently the fact that he can no longer drive set off a rage that continues and his anger is targeted towards me alone. In his mind I am not compassonate enough about his losses, not empathetic enough. Perhaps I am not. Some of that could be the wearing down of my own abilities to extend myself to a person who is really marinating in his misery and truly wasting precious time while actually, at times, blaming me for the disease — this wouldn't have happened but for the stress I cause him says he.

He sits and stares, he lies down and stares. And does nothing else but expects me to come up with new ideas to provide something else to engage his interests while there is nothing else he wants to do. Never did. Never had hobbies or interest outside of work and running. Now that he can no longer do either (add the loss of driving) and he is simply miserable. My ideas do nothing.

Just my ramble for this Sunday morning.

charley0419

everyone one acts differently from this nitemare , the not driving set wife off for awhile pretty good about it now, the not arguing is very hard but important.

harshedbuzz

@LauraCD

I am so, so sorry you and your DH find yourself stuck in this place.

I know it's no help, but my mom and I could have written the exact post in the time around which he was initially diagnosed well into the middle stages. Now that we are in stage 8, I can truly say that the phase where dad was impaired in terms of executive function, social filter and empathy but at enough wherewithal to rail against the changes in the power dynamic of his relationship with mom and the necessary limitations on his participation in decision-making.

Dad had a lot of cognitive reserve and a challenging personality prior to dementia. He was not a good husband but so long as he was ruling the roost was entertaining. He definitely had some undiagnosed mental health issues— his psychiatrist thought maybe bipolar but I think he was more borderline or even a high-functioning sociopath. He and I never got along; I was not his favorite.

As a result, I saw a darker side of him than others seemed to experience until he developed dementia and lost the ability to control how he presented to others. As a result, it was impossible for me to wrap my mind around the oft cited it's the disease talking. Because I'd heard this song as far back as I can remember. It was easier for his brother and even mom to see it that way, but I knew better.

Once in stage 5ish I chided him for how ghastly he was treating mom. He looked at me and said, "I am miserable and plan to make everyone who had a hand in this suffer".

Dad's particular form of mixed dementia— Alz and an alcohol related form called Wernicke-Korsakoff's came with a lot of paranoia, suspicion and conflated memories. I struggled mightily with the idea that I should apologize for transgressions I had not committed. One he was stuck on was that I had "stolen" $360K from him. Sometimes I sold his house for too little or somehow got into his accounts, but the amount was oddly specific. We appealed to his geripsych for an increase in his Seroquel because of his agitation which was trending into aggression but dad showtimed and the psych came away with the impression we were looking to sedate him or something.

I decided to make a short video clip of one of dad's episodes to share with the psych and had the opportunity later that week when he started on the $360K (which I had discovered was the amount he lost daytrading). When he started, I suggested maybe he was confused and that he lost the money in the market. He went ballistic and I got my footage. But after, I tried admitting to the crime and promising never to sell his houses for too little and he calmed right down. Go figure. I was surprised it worked.

Mom had a harder time. He'd been the unfaithful partner on and off for years so when he accused her of cheating, she just couldn't accept that strategy even though she witnessed how well it worked. Even on lower stakes accusations, her apologies weren't always as accepted as mine.

We also found distraction pretty ineffective for both mom and myself until well into stage 6. My DH could redirect much earlier in the game than we could; some of his redirections were so ludicrous that it was hard for us not to laugh at them. It was almost like DH was trying to see what he could get away with. Again, he eventually was distractable for me sooner than with mom.

This sounds like a situation where medication should be trialed for both your sakes. It didn't give us a 180 in behavior, but it calmed things down so that dad could stay home through most of stage 6. The progression of the disease also helped in that he couldn't hold onto anger as effectively as he could earlier.

In the last weeks of his life, he changed a great deal. It was as if he regressed to the sweet little boy his old aunts described— a time before whatever mental health issues came to the surface.

HB

Quilting brings calm

Medication is probably your only option, if you can get him to take it.

Avoidance is probably the only other thing you can do. Which is not really possible when you live in the same house. At this point, though, he is safe to be left in one room while you go in another. As long as you don’t leave him in the kitchen. So I suggest that you move from room to room avoiding him when he gets argumentative. I would turn on the tv to whatever shows he does like. Lay a 300 piece puzzle out, get it started and conveniently find something to do in another room.

Lack of empathy on your part is totally understandable. You are trying to do it all, barely keeping your head above water and he’s not grateful at all - he’s actually upsetting the plank of wood you are clinging to.

midge333

@LauraCD : Is your husband on an antidepressant or antipsychotic? It sounds like he would benefit from both. Ask his internist or family doc if they are willing to prescribe. If not, ask for referral to geriatric psychiatrist. I am sorry. None of this is easy.

CampCarol

@LauraCD - I am in a very similar place as you, although my husband might be a bit further down the road. He knows there's something wrong with his brain and constantly worries about it. He's definitely depressed as well. I can distract on some topics, but not this one. Sometimes I can step away from the arguments, but not often. He doesn’t think I'm taking good care of him and says that he will find a new caregiver or move out since I'm so horrible (and it's true; right now I'm running on 2 hours of sleep and yelled at him earlier). He no longer drives either (he took himself off the road and is still with it enough to know it was the right thing to do), and I am out of ideas to entertain him. His passion was fishing; he can no longer do that. Can't work the TV remote either. Can walk but doesn't want to, and is slowly becoming agoraphobic. His Dr. initially prescribed Donepezil, but he refused to take it. I tried to hide it in his food and that did not work (which caused a catastrophic response when he figured that out). He finally forgot about that episode, and now he's on Escitalopram. I did not tell him about this med either; it's a small white pill that looks similar to another that he takes (the Donepezil was light blue and stood out from the others as clearly something new). They just upped the dosage because I'm not seeing any difference and it's been > 2 months, so I guess we'll see. I am keeping my fingers crossed. Hopefully if we can take the edge off the anxiety & depression, other options for care will open up. Thinking you should seriously consider meds as others have suggested. Remember you're not alone here, please reach out and let us know how you/he are faring!

ronda b

I feel you. My Dh was the same way. Always angry. No hobbies aware of what was going on with him. Neurologist put him on sequel and trazadone helped alot. Now he just throws stuff away he doesn't want, food out of the freezer and frig. Gets expensive but is better than all the anger.

jsps139_

The anger in my DH about no longer driving lasted a very long time (years), and I dreaded the rant I knew was coming every single day. I did not know about Seroquel back then, but oh how I wish I did. We are in year 10 and he’s been on Seroquel about 1 year I think. It has made our lives so tolerable compared to the first 9 years.
I hear your pain, and hope something helps him to calm down soon. It is a hard hard way to live.

DWTired

Oh Wow…It's my life to a T! I went and talked to his Neurologist by myself and he started him on Seroquel 25mg twice a day and I can go up to 50mg which I just might do…in almost 2 weeks I have had 3 good days. Other days I just can't get anything right. I'm hoping the increase will help, but also feel guilty for possibly calming him too much where he has no life, and sleeps. I know I do have to do something before he hurts me. He pushed me the other day and told me to go AWAY! LEAVE! I was aggrevating him on purpose so I could anyway…so I went to another room. He came in 1 1/2 hour later as if nothing had happened.

betyannthenurse

My Name is Betty. My husband got diagnosed in May 2023. I am at the beginning of this very long journey and still can't believe how our lives have been turned upside down, this feels like a nightmare. I am so afraid of what is down the road.

My daughter and I sold my husband's car and told him it was because he just retired, and we didn't need a second car. I can't tell he can't drive anymore because he would be so upset. Just learning how to live in the Alzheimer's world now :-(

Biggles

https://alzconnected.org/discussion/71226/alzheimers-progression-is-not-linear

Oh how I feel for you I think we might be just a tad further along than you are but I relate big time with your journey. My DH is too aware to be in nvolved with day-care visits and the degrading ‘fun’ they have. Never been interested in anything except our business, our sailing and flying career. Thus when it comes to a jolly bus ride or a horse race hat making day or even having a ‘jolly’ day 10 pin bowling it’s not on. He’s so angry at not being able to drive and blames me. He too is very aware of the way people now talk to him or actually ignore him he cannot be lied to or cajoled into joining in with a group. He is only content if I fill his day with outings, coffee stops, picnics or n the park. He gets upset if I am on the phone and will make a fuss so I have to hang up. I feel so isolated on occasions. It’s hard and I commiserate with you.

Maru

I am so very sorry that you are living in this nightmare. Deepest sympathies.

????

Unfortunately, we all are in the same boat. Trails make take a little different path, but they are similar. I try not to argue with my wife. I also just try to move myself to a different area. I have a shop that I spend a fair amount of time in to distance myself from the situation. But at times that does not work. This is a terrible thing for all of us to go through. I wish I had a magic wand for all of us.

mathreader

Wow -reading all of these posts makes me really understand that this is a way of life for so many of us. Thank you all for telling your stories. My husband doesn't have any hobbies either. He used to spend hours reading the news, but now does very little of that because he is so convinced his iPad and iPhone don't work right (of course they do). He can't handle a TV remote either. He is so negative all the time. Me being on the phone or not being immediately available to help or find things makes him agitated. He takes Seroquel now which has helped with the hallucinations and the disorientation, and he's been on Rivastigmine for a while now. But he needs so much help. It's easier to do things myself which sometimes annoys him. We are waiting for a new evaluation. Last year he was told he had Stage 4 Alzheimers, and I'm thinking we are more like Stage 6 now. I guess we are all following the same path here. It's so hard.

AlzWife2023

https://alzconnected.org/discussion/comment/228952#Comment_228952

Sounds a bit like my DH & I think he’s stage 6, too. He is spending less time on his phone since I got about 20+ National Geographic magazines from the library and left them on the coffee table and dining table.

He finds the news app on his phone and he’ll read anything. I think his attention to what he’s reading has decreased b/c he no longer talks about the articles at all or asks me questions. Despite “reading the news” for hours every day over the summer and early fall he did not know who was running for President and never heard of Kamala Harris. Maybe 6+ months ago he’d ask a ridiculous question about what he’d read, but he was still able to hang on to details from the article. When he started reading the Nat Geos he asked me what do you think of this? I realized that he probably had something else to say or at least I knew he was not really saying anything except I’m reading this & I said it’s a good magazine, it’s been around forever. (We had a subscription for YEARS). He looked a bit confused & I said do you like it? He answered affirmative and seemed happy —like he was making a connection & tried to say something else but it didn’t really make sense. Moral of the story: he’s losing words and the ability to communicate verbally, rapidly, I think.
I am glad he likes the magazine, tho. 😂❤️Gods bless us all!

DWTired

https://alzconnected.org/discussion/comment/228758#Comment_228758

I let his Dr tell him he could not drive anymore. He didn't like it at all, but it's better than him having an accident hurting himself or others and possibility of getting sued!

Maru

My DH is still somewhere in ES ALZ. But, after 3 weeks of "normal" he is now progressing. He couldn't make the connection between spilling a glass of water and the need to clean it up. That seems to be a whole new level. He had to stop himself yesterday, as he was trying to tell me something. He had lost all the words that were necessary to complete his thought. It was such a jumble of words that I could not deciphe them. I know he feels bad about it. But, I am fortunate. He has not been agressive. That may change in the future, but I will just count my blessings for this day and worry about tomorrow tomorrow.