AboutMary Gordon Expertise Several years direct experience as caregiver for family member who died of end stage AD. Did lots of research and dealt with a lot of health care professionals and caregivers over the 7 years from diagnosis to the end. Used various care options from community based resources to increasing levels of institutional. Mother of three, two born during our loved one's decline, so I know what it is to be the ham in the sandwich, taking care of the older generation and the younger at the same time and trying to balance everyone`s needs. Ask me, I`ve probably been there, done that. We made lost of mistakes and learned everything the hard way - but you don`t have to! If I can`t answer your question, I`ll steer you to a place or person who can.
Experience Currently a program manager for a large utility company. My Alzheimers experience comes from having the illness in our family. Out of necessity, we did a lot of research in order to understand the disease, plan for what might come next, and make the right decisions to help and support our loved one. Please note, I am a Canadian living in Toronto, and therefore am not the best person to ask about US regulations and insurance rules!
Question I recently learned that my aunt is in a nursing home with late stage Alzheimer's. My cousin was caring for her until she herself had become ill and subsequently died.
I am preparing myself for the worst. My aunt no longer recognizes me and does not remember my brother and myself. Her long term memory is also impaired. I had to assist her with eating, once she had the food in her hand, she kind of knew what to do with it. She is now wheelchair bound and seems to be in a world of her own.
My question is, from your experience, is my aunt in the final stages of life and is her anticipated decline going to be sudden?
Answer 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
