End Stage Dementia

• Stage seven or beyond according to the Functional Assessment Staging Scale
• Unable to ambulate without assistance
• Unable to dress without assistance
• Unable to bathe without assistance
• No meaningful verbal communication, stereotypical phrases only, or ability to speak is limited to six or fewer intelligible words

Types of dementia
After Alzheimer's disease, the most common forms of dementia are vascular dementia and Lewy body dementia. Sometimes, a person can have more than one of these problems at the same time. Frontotemporal dementia is less common, but may be mistaken for Alzheimer's.
Vascular dementia
In vascular dementia, arteries feeding the brain become narrowed or blocked. The onset of symptoms usually is abrupt, frequently occurring after a stroke. However, some forms of vascular dementia progress so slowly that they are difficult to distinguish from Alzheimer's disease. Some people have both Alzheimer's and vascular dementia. Vascular dementia often causes problems with thinking, language, walking, bladder control and vision. Preventing additional strokes by treating underlying diseases, such as high blood pressure, may halt the progression of vascular dementia.
Lewy body dementia
Lewy bodies are abnormal clumps of protein that have been found in the brains of people with Lewy body dementia, Alzheimer's disease and Parkinson's disease. This suggests that the three ailments are related, or that Lewy body dementia and Alzheimer's disease or Parkinson's disease sometimes coexist in the same person. Some people with Lewy body dementia have experienced improvements in symptoms when treated with Alzheimer's or Parkinson's medications.
Frontotemporal dementia
Because it affects the areas of the brain that are responsible for judgment and social behavior, frontotemporal dementia can result in socially inappropriate behavior. Symptoms of this form of dementia, which runs in families, usually appear between the ages of 40 and 65.

Dementia can be divided into seven stages, see here.

Suffice it to say that to me, it is a complete shock to learn, after all this time, about the stages of dementia, and to see the clear progression of the disease for DH's momma. We have seen her move from clear, sharp and intensely engaged last January (2007) to this new diagnosis - End Stage Dementia - this week.

I have been only peripherally involved during this time with my mother-in-law’s health, but have been an observer with an ever more breaking heart. From my perspective, then, I can say that we (the family) never received clarity from the medical establishment regarding an INITIAL diagnosis of dementia. We observed some of our dear one’s behavior, and as it became more pronounced – specifically when she became angry and agitated for no reason, or misplaced her wedding rings – or when she seems to have some mild “waking dreams,” – the family pressed various doctors for some help and assistance. Finally one doctor indicated that she “might” have some mild dementia, and prescribed her some medication that he said could help slow things down.

In February 2008, she had become sweetness and light again, and though she still occasionally seemed disoriented, it was slight. Then she fell – and the decline began again.

She fell, trying to get to the door to open it for her husband. She was hurrying, and fell over the coffee table, hitting her arm and her head. An ambulance was called and she was quickly taken to the hospital, where for several weeks she had a very difficult time – first with blood around the brain, then with some swelling, and with the elbow break – and all the time the drumbeat of “I want to go HOME.” And oh, how we all wanted her to go home.

She was transferred to a rehabilitation hospital, and after three weeks of working with her they indicated that her mild dementia was back in force, and was impacting her ability to learn her therapy and make rapid progress.

She was moved to a nursing home, and there were several difficult MONTHS. Again with a constant desire to go home that we could all completely understand, she fought being in the home, was subject to dramatic mood swings, had multiple physical challenges, and fell three or more times due to balance.

During this time there were doctor’s visits, and in fact, I even took her to a scheduled appointment at the hospital for a CT scan. NOW, I know that this scan was most likely associated with SOME DOCTOR SOMEWHERE considering her current brain health, affiliated with her progression in dementia. At the time we had no idea what the CT scan was for – or frankly, which doctor was even looking at it.

A side note that I will come back to over the course of the next several weeks or entries - It is astounding how LITTLE information is clear and simple with the entire nursing home process. I mean, REALLY. You will not believe it. Every day, I felt like – What? You Are Kidding Me.

During this time there were also meetings with the nursing home personnel, of which many were - from my perspective - completely unproductive. There were repeated requests from the family to adjust medications – most of which were ignored. There was continued shock at the lack of care – and continued appreciation for the care that was provided. There were arguments and deep divisions among the children and the family.

And then, one evening, she fell out of bed and broke her pelvis.

She was taken to the hospital, then after about three days, back to the nursing home.

(SideBar. DH’s dad (her husband, duh) was approached by the nursing home when she was moved to the hospital, indicating that he needed to agree to give up her bed in the home or be charged $100/night. He was also told that he needed to come to the nursing home and get her possessions.

The children, of course, were stunned – and no communication came to those with Medical Power of Attorney or familial responsibility.

Over the next day or so as we were trying to understand all that was really going on, albeit from a distance, it seemed like there were no clear answers. Did she have a room to go back to at the nursing home? Did the process need to start again for her to get a room? Was she being charged $100/night?

And then, on the evening of the third day, DH called the hospital to check on his mom – and was told that she was no longer a patient at the hospital. WHAT????? (See, here I am – REALLY? Are You Kidding Me?)

After lots of calls here and there, we determined that no one in the family had been called, but that she had been released back to the Nursing Home!)

Now she was in pain and unable to move. Six weeks in bed, with very limited movement, had an unbelievable impact on her interaction, her engagement, her interest, her vocabulary, and her abilities. She lost weight. She stopped doing things for herself.

Now, her pelvis is completely healed. The “bone” doctor indicates that she should have no bone problems going forward – that her bones are very strong and should she fall, she may have much more resilience than expected. Nice!

However, the dementia has apparently increased. She cries often and for no noticeable reason. She is obviously very distressed. Is this due to medication? Who knows.

The family asked for a change in the assigned doctor. Finally, week before last, that happened. The new doctor came and did a face to face assessment. He recommended that we have hospice come and do an assessment, or consider “palliative care.”

DH submitted with request for a review by Hospice. Once the hospice doctor met and completed an assessment, the diagnosis was (for the first time) clearly shared with the family – “End Stage Dementia.”

Fundamentally, I understand that her initial fall impacted her arm and her brain. I realize that her dementia is related to brain damage. I also believe strongly that being “institutionalized” has in no uncertain terms hastened her decline. My heart is breaking for my husband, for his siblings, for his father, and most of all, for his dear mother in this most difficult of predicaments.