Plateaus and Transition From Early to Mid Stage

djg001

Hi everyone.  I don't post often, but reading all of your insightful threads and responses is always something that brings me comfort and knowledge.

My father is in what I would consider the latter part of early stage Alzheimer’s.  He is 92 years old and lost his wife about 18 months ago to cancer.  She was his caregiver and support.  He has had some level of cognitive decline for at least the past 7 or 8 years and has slowly progressed to a diagnosis of early stage Alzheimer's several years ago.  He continues to live in the house on his own since my mom passed, with an aide coming in to help every day.  He functions well overall in everyday activities – getting to bed, getting up in the morning, dressed, showered, reads the newspaper, etc … His short term memory is pretty much gone and his mid to long term memory is pretty limited.  Having said that, he has been pretty steady with no obvious decline since my mother passed away.  He is normally aware that she is no longer with us and of his situation in general.  However occasionally, when he wakes up in the morning or dozes off for a few minutes in the afternoon, he wakes and his memory or awareness of his reality gets wiped out temporarily – he will call me and ask “where is everybody”, thinking that my mom must be out somewhere.  But give him a few minutes and his reality would start to come back to him, even if he didn't really want to know.

Lately, this is starting to happen more often, and last longer before his awareness returns (last night, for example, I missed a call from him around 9PM.  When I called him back around 11PM, he still was asking where everyone was and why my mom was out so late.  Once I started to talk to him, he started to realize again)

My question for the group: have you experienced long plateaus at a certain level, especially at this stage?  What is the transition like from early to mid stage?  Does it happen quickly after a long seemingly stable plateau?  Or given his very slow progression over the past several years, does that indicate a trajectory that would typically continue to progress slowly.  I’m concerned that this is a first sign of a downturn to come, as it is the first real tangible change that I have seen since my mom passed away.  Trying to brace myself for what comes next and make sure that I am prepared. 

SusanB-dil

Hi djg001 - Unfortunately, we never know trajectory from one person to the next. My mom has been on a slow, but steady course over the last few years. Sometimes it seems like the spiral has gone a little faster, particularly after my dad passed last year. He was her rock and they were a few weeks short of being married 65 yrs. I could understand where that would certainly have an impact on the decline. Losing your mom may be an impact with your dad's decline.     MIL has plateaus that we have been calling like 'stairsteps', and some of those steps backwards have been fairly small, while another step may be a bit more drastic. I know there is a big difference due to mom's alz, and with MIL, who has alz+vascular.  Vascular tends to have those types of plateaus, but they are still unpredictable.  Sometimes it seems she is on a bit of a steady decline, and then there will be a step of a decline - hope that makes sense - and it is probably because of the two types of dementia going on.

Also - sometimes MIL will not just 'doze-off', but totally 'doze-out-like-a-light' in the middle of something, and at that point, we think it may be another TIA, because often, there will be another step back afterwards, usually manifesting within 12-24 hours or so.

Good that your dad has someone to assist every day.  Do make sure that DPOA and medical accesses paperwork are in place. 

Here are a couple of links that may help in understanding those stages for you.

https://www.alzheimers.net/stages-of-alzheimers-disease/

https://tamcummings.com/stages-of-dementia/

Rick4407

Hello DJG.  My DW was diagnosed about 6 years ago with vascular dementia and then alzheimers was added a year or two later.  She is now entering stage 7.  

Her decline in the first couple of years was definitely in drops and plateaus.  The plateaus were initially 2-3 months.  Over the years the plateaus have slowly gotten shorter.  The first 6 months of this year they lasted a month or so.  Now it seems every week or 10 days there is a drop in capabilities.   Good luck, Rick

storycrafter

Hi Djg. My father's process was very much like you describe about yours. He too, lived alone after my mother died. He was in an independent living apartment in a big retirement complex. As time went on we needed to hire more caregiver coverage to come in to assist him with meds and meal prep. They also provided socialization.

He had intermittent confusion like you describe, which was significantly affected by dehydration. The last couple years of his life he was always somewhat dehydrated and it became more difficult to help him stay hydrated. He too, would perk up after speaking with us on the phone and we could eventually usually talk him through the confusion until he was more alert. I think low oxygen and dehydration played a significant part in his confusion/Alz in his last months. Conversation, making the effort to speak, or laugh together would often revive him after a few minutes because it increased oxygen flow. We tried everything we could to encourage him to drink fluids, but there comes a point there's little more one can do.

It was a fall that finally led to an ER trip to the hospital, a broken hip. He got through the surgery to stabilize his leg to reduce pain. But it was as if he made the decision then that he was ready to go. He refused to get out of bed after that and stopped eating and drinking. The hospital refused to release him to return to his home even though we hired 24/7 care to be with us. We found a hospice facility that did comfort IV's/meds and allowed family 24/7, which was a great mercy during the heart of  pandemic restrictions.

It is impossible to predict how it will go for your father because every individual is unique. I hope hearing of others experiences is somehow helpful and reassuring to know you are not alone in this difficult caregiving journey as we support our loved ones through their final days. Reach out to others until you find the support needed for you and your father. No one can make this journey alone and it's worth the effort to build a team of support.

harshedbuzz

djg001 wrote:

My question for the group: have you experienced long plateaus at a certain level, especially at this stage? 

The model of a series of plateaus followed by an obvious decline is more consistent with vascular dementia. Has your dad had a comprehensive evaluation for dementia? It could be he has VD or a combination of Alz and VD.

Another thought is that this isn't the steep decline you think it is. It is likely that your mom provided considerable scaffolding for him without even realizing it which made him seem less impaired than he actually was when she was still with him. Two other factors that play into how a PWD presents are showtiming and time of day.

Showtiming is the ability to hold it together for a brief period during which a PWD can seem a lot more with it than they usually are. The former can be crazy-making for caregivers as PWD tend to put on quite the show for family and physicians making the caregiver looks like they're making things up.

PWD tend to do better earlier in the day which is when family and medical people tend to see them. It's in the evenings and overnights that things can get really rough for them with confusion, hallucinations, delusions and agitation. My advice would be to create some excuse to spend the whole 24/7 with dad for a couple days and see how his behavior ebbs and flows throughout the day. 

Your dad's need for supervision and care needs to be driven by his symptoms and behavior at their worst not what he can rise to under ideal conditions. The best way to collect that data is to stay with him for a long weekend. 

What is the transition like from early to mid stage? 

There is no OSFA answer to your question. Much will depend on his diagnosis but even then, if you've met one person with dementia, you've met one person with dementia. 

For my dad with mixed dementia, this confusion about dead or alive didn't surface until the later middle stages. The rule of thumb is to not tell a PWD their LO has passed over and over again, but dad was fuzzy around my sister and would say things like "she's dead, isn't she?". My aunt, who had VD, was also in the mid-stages and in a MCF when she became unsure about whether her husband was still alive. My friend's mom was clearly stage 6 when she became confused about her husband having passed. 

One concern is that sometimes family are so focused on the memory aspects of dementia that they don't consider the losses of executive function and critical thinking that occur quite early on. Do you have the legal instruments to act on his behalf medically and financially? If not, you need to obtain them and do a deep dive into his financial life and secure it yesterday. 

Does it happen quickly after a long seemingly stable plateau? 

It can. Another of my aunts (likely VD) went from early stages to late as the result of a fall. A friend's brother went from passing as OK to late midstages as the result of a stroke. TIAs and illness can also cause noticeable declines.

Or given his very slow progression over the past several years, does that indicate a trajectory that would typically continue to progress slowly. 

Not necessarily. Plus if you are not the 24/7 caregiver or are relying on his reporting of  meals and showers happening, the progression may not be as slow as you assume it to be. My dad continued to report his behavior from before dementia well into the later stages. He'd claim to be eating healthy, showering and changing clothes when I knew from my mom that wasn't happening without a protracted battle.

I’m concerned that this is a first sign of a downturn to come, as it is the first real tangible change that I have seen since my mom passed away.  Trying to brace myself for what comes next and make sure that I am prepared. 

The problem here is that things can go sideways without you getting an obvious warning that his care needs have changed. Sometimes "what comes next" results in disaster before you get a chance to put siderails in place.

HB