When did you know the person you were caring for had moved into the late stages of Dementia?

Hi Gremlin, I can only speak of my experiences with my Mom who died of Alzheimers. At the beginning of her illness she was mostly OK, able to feed herself, go to the bathroom on her own etc. What she could no longer do: she couldn't play cards or any game that required counting or that had rules more complex than GO FISH. She had short term memory issues, loss of time and calendar abilities (not knowing the day/date/year) asking if it was day or evening when told the time and so forth. She was under the care of one of the best memory disorder neurologists (Dr. Zimmerman) from the very beginning. He really didn't use the stages of Alz. as he felt there were too many times a person could have part of one stage and also part of another.

As she progressed she lost the ability to toilet herself, she became aggressive, took to hiding things and then blaming us (my dad and I) of stealing from her. She began to wander, going home (a whole other story), sundowning, falling, personal hygiene went right out of the window, trouble walking, falling etc.

Then came the beginning of the end stage....She was completely incontinent, refusing meds, unable to walk, when she could talk it was in her mother tongue (german) not american, she no longer recognized us, still had infrequent bouts of aggression (don't let them get a hold of anything sharp, like knives we had a near miss when my mom's broken brain caused her to try and stab my Dad) and Hospice started to come (Thank God!) We were given a hospital bed that we put in the family room, she had a catheter put in, she was totally bed-ridden and for the most part totally non-verbal, unable to move on her own, except her arms and hands. Now she just 'was'....She could do nothing! We talked with her, read to her, watched tv, feed her, bathed her and slowly watched her die. We kept her home the entire time. She started to refuse to eat, sometimes she would drink, Hospice was there with us the entire end stage and assured us that this was simply part of the dying process and that to try and force feed her would be very painful and harmful to her. And then late one January night, with my Dad and I, at her bedstead holding her hands she died. Again speaking just for myself....it was a relief that this horrible journey had finally ended.

My prayers and blessings are with you! Lindaz.

The following is the list of symptoms you generally find in a loved one who is in the late stage. All the symptoms may not be present for all the individuals. But once you have a handful of them present, you can be pretty sure that your LO is at end stage.


Double incontinence or urine incontinence and difficulty in general
Inability to walk or even stand up by themselves
Inability to feed themselves
General loss of control of movements
Difficulty sitting up straight in wheelchair
Inability to speak in complete, intelligible sentences but still speaking gibberish
Lengthy intent staring at individuals, zoning out
Slipping into and out of sleep
Difficulty swallowing, liquids 'pool' in mouth etc.
Eating everything in sight
Agitation
Weakness
Declining comprehension
Not recognising family members
Needs to be washed and dressed
Doesn't react anymore to loud noises or quarrels
Mute
Still smiles
Fully dependent
Mostly responsive to visual queues rather than sound queues
No initiative
Rigid
Can not express feelings
Paranoia
Hallucinations

Looking for any clue...

I feel for you. Unpredictability is a huge stress factor in almost any situation. In a situation you're helpless to change, all the more so.

I expect you've already been given this? - but in case not, try https://www.alz.org/alzheimers-dementia/stages

I am very much afraid it won't get you a lot further forward for practical purposes, though. You might narrow it down to the decade, perhaps, but which year is anyone's guess, really.

So, I wonder if you might find it more of a relief - ironically - to operate on the assumption that you will be dealing with this indefinitely. You're there for the duration. It'll be over when it's over. That way, depressing as it might sound as a platform, you will be more focused on finding support for the here and now that helps it work as well as possible; rather than putting your whole life in limbo until some nebulous release date.

What do you currently have in the way of support?

I always disliked the "stages"
My husband stopped talking very early on in the disease process but he was feeding himself far past the point that was given on the charts. He was also walking longer despite the fact that he had broken a hip fairly early on and had gone through rehab. And he became incontinent largely due to the poor rehab facility he was in.
Look at the charts giving the 7 stages. But use them only as a guide.
The progress may be faster or slower with some things. Remember each person is an individual.
A trip to the hospital is not the way to get a "diagnosis" as to the stage the person is at. Consulting with a Neurologist or a Psychoneurologist that can professionally assess the persons abilities and the progress (I should say the decline) that is being made is the better way to figure out where the person is.

I learned to appreciate what my Husband could still do, I marveled at the little things that in my mind he should still not be doing. Some of the time it made me laugh because all of a sudden he would do something that I figured he could not do. I had some paper and a pen on the table I was making a shopping list (yes I still hand write a list) and when I got back to the table he had taken the paper and written letters and a few actual words on it. Mind blown!!
So unless it is VERY important for you do not stress much about a "stage" Focus on what she can and can not do, work with the abilities. Watch for declines. My Husband had several incidents where I had to call for a "lift assist",they were not falls but he would slide out of a chair or he tried to sit in a different chair that he could not get out of. I marked each one on a chart on the refrigerator so I could tell Hospice. Looking back each and every one of these was the beginning of another decline. So look and pay attention to little incidents that may be a clue to a decline.
It also helps to know the type of dementia Alzheimer's is usually a slow but steady decline, it may accelerate later though. Vascular dementia there are sharp declines that come on quickly. I think my Husband had both as his declines were slow and steady but each of the incidents I mentioned was an indication of a sharper decline. I think this is when he may have had a vascular incident occur. I do not know enough about the other types of dementia to detail their types of decline. I do know that LBD is tricky to manage and treat.
So finding out the type can be important to monitor the types of decline but is it so important to put someone through all the testing..I think not as for the most part the outcome is the same.

Unfortunately, dementia is not the sort of disease that easily fits into nice little categories. My mom, like gladimhere’s was also very unpredictable. We could start out a visit having a perfectly normal conversation and then, suddenly, she’d tell me men were coming through a secret panel in her wardrobe closet.

If a person falls or or becomes ill and winds up in the hospital, they are not necessarily tested for dementia. In my mom’s case, she was hospitalized for a serious UTI, but the nurses suspected it was more than that and she was evaluated. I was told they felt she could no longer live on her own.

Like Barb suggests, take care of yourself. If your mom needs to be in a facility, it’s ok to put her in one.

That is a good list but remember that end stage doesn't necessarily mean end of life, my mom has lived with 14 of those symptoms for several years now.

I'm no expert, but, I'll share what I have seen. I just read as much as I could as my LO was progressing. Sites like this help a lot, as doctors don't usually talk about stages.

You can look at the chart that list characteristics of each stage for Alzheimers, though, it's not exact. People tend to have traits from different stages. For that reason, the chart can be confusing and perhaps not accurate for your particular case. I've read that you go to the stage where the person has at least one trait and that is supposed to be their stage, but, I'm not sure there is any scientific proof of that. However, if she has Vascular dementia or something like Parkinsons, the Stage Chart for Alzheimers might not apply. However, I have read and noticed that once the patient reaches severe dementia, their characteristics are pretty much the same, regardless of the cause of the dementia.

My LO became incontinent and was wheelchair bound quite early after her diagnosis. She even had a positive Babinski reflex early on in her neurologist visit, which surprised me, because I knew what it meant and I could see the doctor was surprised too. It is normally a late stage symptom. He said then she had severe dementia, but, she was still able to talk, feed herself, knew family members, had some long term memory, etc.

She has Vascular dementia and her balance was horrible. She had numerous falls due to poor balance. After multiple fractures from falling, (she fell even with a walker), she ended up in a wheelchair and it was the only thing that helped eliminate the falls.

In year two her geriatric psychiatrist told me that she had Profound dementia. I had never heard that term before and looked it up. Still, at this point, she was able to get around in her wheelchair on her own, carry short conversation and recognized close family members, though, not recall their names or how she knew them.

She did pretty well after that, but, after about 3 years, she began to lose speech, ability to feed herself and to recognize her close family members. She also lost weight, despite eating. These things to me indicated late stage. She had some medical issues, but, not a lot.

Year 4, we are meeting with hospice nurse today. She has a fever, is taking antibiotics, doesn't really speak and I'm not sure how much she understands about things around her.

I have read about some people with Alzheimers who progress quite slowly and are able to walk, talk, write letters, use the phone, recognize family members for many years. Even as much as 15 years. So, what is causing the dementia does have a significant impact on the time progression, based on what I have seen. I'd discuss it with her doctor and see if they could offer you more information.

Good question! I struggle with trying to look ahead, not just from a physical/mental/emotional standpoint, but from a financial standpoint. My mom is at home right now, with paid helpers and me. Very expensive! I think of John McCain's mother - age 106. If my mom lives that long, I will be 73!! I guess there is some humor, but seriously, we all want to do the right thing by our loved ones without putting our own lives on hold. And it is so hard not to put your life on hold when you know that whatever decisions you make personally, you will still be tethered to the leash that is the responsibility for the person with dementia.

Hi TornadoJane,
I am writing as a patient with Dementia/Prob early onset ALZ. I am now 59, my DW 51. I was diagnosed while we were in the middle of doing retirement/estate planning. My focus was doing all possible to not bankrupt my DW and college age children and we also have one in elementary school. We created a Trust and put all of our money and property in to the Trust that is only in my DW's name. We are only a few weeks from the 2nd Anniv of the Trust.
I insisted a provision be put in to the Trust where it says that my DW, has made no provisions for my husband....... Currently we all have HC through my DW's employer. Yes, you have to have complete trust in your spouse. My DW is perfect. My DW has my Medical Directive, DPOA, FPOA, and is my Medical Proxy. She knows I do not want her visiting every day, week or month, I want her to be able to distance herself from things, but be able to speak for me when I can't give answers for myself.
I have made it clear that I don't want my family feeling tethered to me and that I want them to go about attending to their families when I am institutionalized. I include my DW with instructions to go about establishing a new life for herself and have told the kids not to give her a hard time about it. I won't know any differently. I am pretty sure that I am moving in to mid stage. I find it much more difficult to make decisions regarding money, decisions on day to day activities of life regarding, how our college age kids share transportation, what consequences are appropriate in different circumstances.
I have decided, I won't put up with insurance company appeals for treatment, or answers to cost of medical care going unanswered. I won't give HC companies a blank check answer of, we don't know how much this MRI will cost you OOP, before doing test. I implore all reading to have these hard discussion with your family, let them know what you want, while you are still of sound enough mind to make decisions.

Has she had a recent behavioral change? Has she seen a doctor? Checked for UTI?

Stages while they are listed on different dementia websites are only guidelines. She could be all over the map, which my mom was up until near the time of death.