Expert: Mary Gordon - 12/3/2009

Question
I wrote to you several months ago about my aunt, who now resides in a nursing home.  I have seen a decline in her since August, when I last saw her.  She is in a wheel chair, needs a hoyer lift for transfers and needs assistance with ADLs.
She is 94 years old, has hypertension and was probably diagnosed about 3-5 years ago, but I'm not sure.  It breaks my heart to see her like this and I want to visit her more often, but she doesn't know me.
My question is do you think she is in her final stage of the disease?  She just stared blankly and kept dozing off.  I spoke with a activities assistant who recommended that I bring pictures in to stimulate her.  I want to but do you think this will upset her?  I am dreading the inevitable and you were very enlightening and were so helpful the last time.

Answer
Hi Ellen, below my signature I've pasted my response to you last September, just to remind you of what we talked about.

I think you are asking me about what to do with her when you visit. If you live close, my suggestion would be to keep visits short, and plan to have something specific planned to do with her during your time together. It will make it less stressful and difficult for you, and it might bring her a little pleasure. I know it can be very difficult and painful to sit there and not know what to do.

You could come at meal time or snack time, and help feed her, or even bring her a special treat like a pudding or custard she could handle and might enjoy the taste of.  You could bring some skin cream and give her a nice foot massage. You could wheel her around in her chair - if the weather is good and they have outdoor space, you could take her outside for a little wheel around. You could bring in a pet for her to pat - lots of people with later Alzheimer's really enjoy a gentle kitty or dog. You could bring her a teddy bear to cuddle. Picture books are often a good idea. Even people who are quite far gone can enjoy pictures - I would look for a book of brightly colored pictures of animals or babies. My mother in law really liked to look at family albums, even after she could no longer talk, and sometimes she would even point out things she seemed to recognize. Bring along a CD player and listen to some old music together.  Keep in mind, touch is something everyone craves. So hold her hand, stroke her cheek, put your arm around her.  Talk to her about old times. Tell her things you remember about when you were young or stories you've heard about her, even if she can't speak to you. Your time together is short - tell her what she means to you and everything that is in your heart. You won't regret doing so - and you will regret it if you've had the chance and you didn't talk to her.

None of these things will hurt her. If she is getting agitated for any reason, you can stop whatever you are doing. You know every visit may be the last one. It doesn't sound like she is quite at the end of the disease, but at this point, she is very fragile, and even a little thing like a cold can be enough to tip the balance into the final spiral.

Treasure her!! Hope this helps

Mary


Here is my response to you from last September about the final stage. :

Hi Ellen, eek, somehow my answer ended up in a reject message. This was an accident, not sure how it happened and I apologise.

It's very hard to predict what the final months will be like - or how long this may go on. A lot depends on her overall health and frailty. If she is a healthy robust person other than her advancing dementia, she may survive some time. My mother in law was very healthy overall and lived two years in the final stage, before passing away from the dementia just prior to her 80th birthday.

If a person has a constellation of complicated health issues, the dementia makes it very hard to detect and manage those issues, so their lifespan can be considerably shortened. As you can appreciate, many families will elect not to try and treat health problems other than with comfort measures - they feel it is kinder to keep the person serene, happy and comfortable, rather than to subject them to a lot of poking and prodding, tests, treatments, trips to hospital etc.

Generally, signs the person is within their last 6 months include ongoing weight loss (no matter what is tried to get nutrition into them), advancing weakness to the point they need to be propped or they will slump over in a chair or in bed, and repeated infections. All of these things are pretty good signs that things are shutting down. In some locations, these signs will qualify the person for hospice type palliative care programs.

Do you know what your aunt's wishes were? Does any family member have power of attorney for personal care decisions? I ask because if someone does, they can discuss coming challenges and options with the care facility - such as enacting a "DNR" order should she have a sudden crisis, or making a choice for palliative care at a certain point. Family may want to have influence as the last months can be gruelling on everyone. It can be hard to watch, and some family be upset by palliative care because they aren't ready to let go, and others will be equally upset by tubes and respirators and IVs what they see as bothersome and pointless treatments and trips to hospital. It can also be very frustrating and upsetting without a power of attorney for care decisions - sometimes medical staff will not speak to you about the details of the person's condition without one.

At this point, your aunt is like an egg balanced on end. She may go on for a surprising amount of time, or she may succumb suddenly to an opportunistic infection like a pneumonia. Quite often, there is a precipitating event that leads to the final spiral, like a fall, a minor infection, a small stroke etc.

Having been through this right to the natural end of Alzheimer's, quite honestly.... pray that something carries her away swiftly and mercifully. Essentially, what happens if they survive right to the last phase, they stop taking in food or drink to sustain life, and they get thinner and thinner and weaker and weaker. It's brutal, and the final spiral can take weeks. I know my husband really struggled with it. He wanted to do something to help her and there was nothing to be done but sit there, wait and hold her hand. It was like having a body laid out for weeks on end without the closure of a funeral - she was gone in every way that mattered and her body lived on. I don't think she was suffering because I don't think she was aware of anything - but it was dreadful to watch and emotionally very difficult for everyone who cared about her.

I don't say this to be unkindly blunt - but just to let you know, there are worse things sometimes than peacefully slipping away from a heart problem or pneumonia.

Below my signature, I've pasted the descriptions of the last two stages (6 and 7 from Dr. Reisbergs's Functional Assessment Staging for Alzheimer's).

Hope this helps. It really is the most miserable, cruel and unfair disease.

Mary G. Level 6

Severe cognitive decline (Middle Dementia or Moderately Severe AD).

May occasionally forget the name of the spouse upon whom they are entirely dependent for survival. Will be largely unaware of all recent events and experiences in their lives. Retain some knowledge of their past lives but this is very sketchy. Generally unaware of their surroundings, the year, the season, etc. May have difficulty counting from 10, both backward and sometimes forward. Will require some assistance with activities of daily living, e.g., may become incontinent, will require travel assistance but occasionally will display ability to familiar locations. Diurnal rhythm frequently disturbed. Almost always recall their own name. Frequently continue to be able to distinguish familiar from unfamiliar persons in their environment. Personality and emotional changes occur. These are quite variable and include
(a) delusional behavior, e.g., patients may accuse their spouse of being an impostor, may talk to imaginary figures in the environment, or to their own reflection in the mirror;
(b) obsessive symptoms, e.g., person may continually repeat simple cleaning activities;
(c) anxiety symptoms, agitation, and even previously nonexistent violent behavior may occur;
(d) cognitive abulla, i.e., loss of willpower because an individual cannot carry a thought long enough to determine a purposeful course of action.

6a - Requires Assistance dressing
6b - Requires Assistance bathing properly
6c - Requires Assistance with mechanics of toileting
6d - Urinary incontinence
6e - Fecal incontinence

Level 7

Very severe cognitive decline (Late Dementia or Severe AD). All verbal abilities are lost. Frequently there is no speech at all - only grunting. Incontinent of urine, requires assistance toileting and feeding. Lose basic psychomotor skills, e.g., ability to walk, sitting and head control. The brain appears to no longer be able to tell the body what to do. Generalized and cortical neurologic signs and symptoms are frequently present.

7a - Speech ability limited to about a half-dozen intelligible words
7b - Intelligible vocabulary limited to a single word
7c - Ambulatory ability lost
7d - Ability to sit up lost
7e - Ability to smile lost
7f - Ability to hold up head lost