Closer to the End: Firmly in Stage 7

It is sobering to come to the certain conclusion that my dear wife is in Stage 7 of vascular dementia.

The Cavalry never showed up, but I do have Hospice here regularly to check on her progression, offer medications and supplies, and provide practical planning. Hospice admission – whether at home or in a facility – has different criteria for dementia patients than for other terminal diseases. With dementia, your loved one does not need to be “at death’s door,” as I had always believed. If your loved one has reached incontinence, you may want to ask your loved one’s doctor about Palliative Care or Hospice. Even if they do not qualify yet, check again at a later date.

I just finished going over the “Physical Self-Maintenance Scale (Activities of Daily Living, or ADLs)” scoring sheet. I had gone over it a couple of years ago, and I was admittedly shocked by how much my wife’s dementia has progressed.

She scored in the second-worst functioning description in every section, with a few in the worst description. It was heart breaking to realize how close to the end my dear wife actually is. As we all know, there is no way to predict the timeline, but her progression into the latest stage is frightening. I have prepared myself as best as I can over the past 10+ years, but I was not prepared for the big-picture view: The journey is coming to an end sooner than I realized.

I have posted here before about the importance of the 7-stage model in order to prepare us for what is coming. It also helps in communicating with medical professionals. Instead of going over every detail, I share that my wife “shows all the symptoms common to the transition into Stage 7.”

My wife can still walk with assistance although she shuffles and her balance is worsening. She is a fall risk most of the time, and she “trips” over seemingly nothing. I hold onto her firmly when we are out to keep her walking as best as I can. Several new symptoms have appeared as well. She “sleeps” far more now, although sometimes she seems more unconscious than asleep. Even at the dinner table, her eyes will sometimes remain closed and she sits motionless and completely unaware of what to do.

“Lights out” is another new symptom she is showing. I am really not sure how to describe it, but it is like her very essence and personhood has left her body. Her eyes can be open or closed, but she will sit motionless and unresponsive. I can call out her name and tap her shoulder and get zero acknowledgment. Adding up her sleep time at night, I estimate that she is “not among us” for nearly 20 hours each day now. It is “the great silence.” Unlike Stage 6, Stage 7 is very quiet and unnerving. The house feels very like a tomb.

When I put her into bed each evening, she lies in the exact same position all night long. When I wake her in the morning, she has not moved a centimeter. Her hands curl like two claws now. I am still able to get her up, bathed, and dressed in the morning, and take her to daycare while I work. I have no idea what I will do when that becomes an obstacle.

Music has long been very therapeutic for her, but that is finally waning. When I play her favorite music now, she barely responds, if she even responds at all.

The dementia journey is soul-crushing, and I have found that the best way to gauge my dear wife’s progress is by looking back in time and comparing behavior and symptom changes over a very long time period. I am just too busy day-to-day to notice or make accurate assessments. By occasionally re-visiting the 7-Stage model, I get a better view of the progression. It is helpful for planning and practicality, but it is emotionally devastating.

I am going to take a break now and fight back tears for what dementia has done to us.

Here are two links to an overview of the 7-Stage model:

https://dementech.com/2022/06/28/what-are-the-7-stages-of-vascular-dementia/

https://www.alzinfo.org/understand-alzheimers/clinical-stages-of-alzheimers

Here is a link to the scoring sheet:

https://www.psychdb.com/_media/teaching/psms.pdf

Love Bill_2001