Stage 5

hiya

My DH is now stage 5 cognitively and memory wise. He is still able to attend to his personal care. Our specialist said this stage can last 6 years….can you share your experience in terms length of time and behaviors? DH has had a couple of angry outbursts where he kicks us out the house, no recognition of me for over 6 months and delusions. His short term memory can be under 30 seconds, lots ‘partly completed’ chores as he forgets what he is doing. The rollercoaster feels long…

ButterflyWings

@hiya - honestly, the last 5-6 years have been a blur. We went from late 3/early 4 to currently 7a in that time and in hindsight it seems pretty fast. But it also has been years of the rollercoaster life that is Alz dementia. Full of drama and very little time for me to track and document it. I have relied on this forum many times for a chance to search on old threads and remind myself what was happening in our world exactly when.

I am still in stunned disbelief (and really hurt) that AlzAssoc seems not to have taken care to preserve years of posts, memories, and caregivers' shared experiences when they updated this website recently. That is the only way I would really be able to answer your question. But unfortunately, lots of our timeline data was here, and it has been erased. I am not the most accurate reporter any more than my DH is in terms of exactly when something happened in our world. I can tell you the "what" in vivid detail because it is so deeply impactful and often either surprisingly delightful, publicly embarrassing but what the heck, or terrifying, but exactly what stage or sub-stage I don't always recall. Our poor recall of those timing details is not for the same reason of course, he is unreliable due to cognitive decline -- me? Refer to my first sentence above...between the twilight zone that is dementia and the total sleep deprivation / exhaustion as a caregiver, it's all been a blur.

Best advice is to just buckle up, but if you are able to document some key milestones (including happy ones), I would. Maybe candid photos or a video here or there. And save any of your "important" posts here just in case you want to refer back and remember. I still am not doing that faithfully as I intended to after the lost memories entrusted here. These 36 hour days just have a way of not letting me stay on "plan", although I am always on task. DH comes first and I am fortunately avoiding whiplash on the rollercoaster lately.

As for when will this misery end (for both of us)? I am exhausted, heartbroken, and often momentarily overwhelmed. Yet today I know he has far less time ahead of him than behind, and am not looking forward to saying goodbye. Wishing you well.

Jeanne C.

I've found this tool to be really helpful. It's from Tam Cummings and has behaviors/challenges by stage. She lists a time range for each stage, but everyone is different. My husband went from 3/4 to 6 in about a year and a half. Take care of yourself as you care for your loved one.

DBAT.pdf

harshedbuzz

@hiya

A couple of things struck me about your post. I will comment below:

Firstly, when you were talking with your DH's specialist, did s/he specifically refer to stage 5 in terms of cognition/memory? IME, physicians break the progression of dementia into a 3 stage model-- mild, moderate and severe. Dad's PCP, his 2 neurologists and 2 different geriatric psychiatrists stuck to a model that aligns more with treatment options. Families and caregivers use a 7-stage model (the one @Jeanne C. posted is a good one) that is aligned more with care needs.

In the model we use here, stages 3 and 4 (which would be a specialist's "moderate/stage 2 for reference) would last an average of 1-4 years each (2-8 years) which is similar to the number he gave you. Also, IME, specialists don't have much to offer and tend to couch the bad news gently. I recall the neurologist who initially diagnosed dad saying "You have Alzheimer's. The good news is people with Alzheimer's can live 10, 15 or even 20 years".

Secondly, the behaviors you describe, while common symptoms, they aren't something you need to live with. Have you been open with the specialist about the difficulties at home? This is best accomplished behind DH's back, btw, via a note handed to him at check-in or via the patient portal. There are medications that can be prescribed to dial back the anxiety, agitation and aggression he's feeling.

Dad was a difficult individual before dementia and the middle and early late stages were rough. HIs neurologist was uncomfortable prescribing at a level we needed, so we found a geri psych to manage his meds. I can't recommend this highly enough. He created a cocktail of meds to help dad feel calmer and be less reactive. This new baseline meant that we could add strategies like validation to keep him calm. Because dad could showtime in the office, I sometimes emailed this doctor video clips of dad's worst behavior so he could get a sense of what dad was like outside his office. My Plan B was to have dad transported to the ER for a geri psych admission. If he's kicking you out of the house, that would be an opportunity to get him hospitalized and properly medicated.

Anecdotes. If you've seen one PWD, you've seen one PWD.

When dad had dementia (mixed Alz and WKS), two of mom's sisters (one mixed VD/Alz and one VD) and a dear friend's mom (Alz) did as well. All four were in their 80s or early 90s. The roller coaster can be long or short, but there are always those blind corners that obscure what your DH's ride will be like. For me, the uncertainty of when difficult stages would end and inability to plan was awful.

My friend's mom lived about 4 years after her diagnosis. She got agitated but it wasn't anything a low dose SSRI couldn't calm. Her death was likely hastened by breast cancer.

My not-so-nice aunt was diagnosed later in the disease at about the stage your DH is. She suffered a fall a few months into a disastrous ALF residency, broke her hip and wrist which catapulted her into stage 7. She passed less than a year after her diagnosis. She was the last one diagnosed and the first one to die.

In retrospect, my dear auntie was showing some slipping as early as 2002. Her husband suddenly had the doing "best practices" and his demeanor with her was more solicitous than before. He died unexpectedly in 2003 and on his death bed he begged another of my aunts to "really look after her". She was OK alone for a time, but in 2007 my other aunt found her sitting in a cold dark house wondering why the cable was out. She obtained guardianship which forced a diagnosis and placed her sister in a lovely MCF where she thrived stalled in a pleasantly befuddled stage 5 for years it seemed before worsening. Her stages all lasted a bit longer than the averages and she didn't died until early 2018.

Dad clearly had noticeable personality and mood changes by 2005 and significant memory lapses as early as 2008. My mom fought me on having him evaluated for nearly a decade. He seemed to be in that stage 4-5ish for 6-8 years. He was finally diagnosed in the middle stages. Once he was diagnosed, his rate of progression picked up and he passed in spring of 2018. While dad did probably live with dementia the 10-15 years his specialist predicted, much of that time was before we really knew what was going on.

Specific to my dad, he seemed to progress a bit unusually relative to what some here experience and compared to the other PWD I knew IRL. He had a fair amount of cognitive reserve which helped him mask his cognitive and executive function deficits. He remembered his closest people until he died, and his speech was preserved in terms of vocabulary, syntax, and prosody and the pragmatic losses weren't obvious unless you spent a lot of time with him. I was focused on other physical changes in mobility, weight loss and even a complete change in appearance that seemed further along to me. As a result, his doctors and my mom tended to assume he wasn't as far along in the disease progression as I did.

HB

hiya

https://alzconnected.org/discussion/comment/202488#Comment_202488

Thank you so much for this info. You have a lot of experience with family going through this crazy disease.

DH specialist know understand the 7 stage model. Even though they told me stage 5, they also refer to it as moderate.

We do have meds to help with delusions but I think I will start passing a note as you suggested to make sure they understand the full picture or even a video. Thank you once again for your response

AnderK

Perhaps I am just tired (er) tonight, but IMHO, mild cognitive impairment is a euphemism for

"Pretty bad, but not as bad as it will get".