Expert: Mary Gordon - 12/31/2005

Question
Hi Mary,

My mother was officially diagnosed with Alz about 5 years ago, although, I feel the disease has slowly taken over her life for about 15 years. I would say she is at stage 6. I say this because, in additon to not knowing what day, month, year, current events, season it is, she has recently become even more incontinent (mostly during bedtime), can no longer perform daily personal chores, tries to run away, accuses my dad of hurting her, etc.. It's been very hard on my dad as well as myself and my 2 brothers. On top of all of this, my mom was diagnosed with stage 3 of lung cancer about 1 month ago. She has just completed her first wk of radiation treatment. The drs. opted to not follow chemo or removal of lung because of my mom's progressed Alzheimers. As a result of radiation, her throat is very very sore. She coughs all the time. This is typical for radiation for lung cancer. As her daughter, I feel we need to visit every avenue of therapy for the lung cancer, but on the other hand, I wonder what the quality of her life will be if we do this. I feel guilty for feeling that maybe we should skip radiation to save her from the discomfort. But on the other hand, she's in the later stages of Alz. Am I being selfish for wanting to continue radiation as a means to lengthen her life or should we decline radiation and provide her with some happier, more comfortable days. And then again, what is the quality of life my mom can expect? Between the end stages of Alzheimers and the discomfort of lung cancer, it seems like a losing situation either way.

Please advise.

Thank you for listening,
Denise robinson

Answer
Denise,

Below my signature I've pasted the description of stage 6 and 7 just for your reference.

I know this is a frightening and difficult time for all of you - and that you love your mother very much and want to do the right thing by her. I can't tell you what that right thing is for you and yours - I can just give you my personal perspective based on my own life experience, and you can take what is meaningful to you and leave the rest. Only you know your mother and her wishes.  

You don't mention if she is stage IIIA or IIIB (IIIB has a very low survival rate irrespective of what you do, so the goal of therapy is usually palliative) - but either way, even if there was no cancer, she has a terminal disease that will take her away from you faster and faster as she moves into the last stages of Alzheimer's. If she survived to the last stage of Alzheimer's, long before the end, she'd be gone in every way that matters.

The question for all of you is at this point, is to really examine what your family hope to achieve for her. You may want to have a frank discussion with the doctor and any religious counsel you may have - can your mother really understand the purpose of the medical procedures? Can she cooperate with therapies? What are the genuine odds of any kind of success - and what would "success" look like or mean? Will she find treatments uncomfortable, painful, confusing or even frightening? Is there a hope of a meaningful recovery for any period of time with reasonable quality of life? What would she have wanted for herself in her last months? In other words, what are medical interventions buying for her? Is any suffering worth the cost in terms of time and impacts in the limited span she has?

You have to look deep and be completely honest with yourself. Is this about what is best for her, or what is least frightening for you? We live in a culture that is not accustomed to letting death come. When we see death coming, we feel we should be doing something, fighting it, throwing every weapon we have it, protecting our loved one. Our reluctance to accept the end is so often more about our own fears than about anything rational - fear of loss, of the unknown.

Is your real job as her daughter to love her, and make sure her last months are as happy, peaceful, comfortable and loving as possible? Stand still for a minute, shut off the noise in your head from all the "shoulda/woulda/couldas" that fear and guilt create and really listen to what your heart tells you.  

Having been through the end stages of Alzheimer's with my mother in law, my personal take on the situation is that the lucky ones who are those who are carried away by other illnesses - because the natural end of AD is pretty brutal on everyone. We prayed for my mother in law's struggle to be over, and none of us ever thought we'd be in that position - of actually hoping someone would die.

When it came to those last months, we went for palliative care, DNR, no medical procedures beyond comfort measures. We kept her very comfortable and dignified, free of pain. We stood by her, we held her hand, and we let the tide go out. It was a very peaceful, quiet end, with my husband by her side (he was an only child). My husband regrets his poor mother ever had to go through Alzheimer's, but he does not regret for one minute letting her go. He feels very strongly that we did the right thing in honoring her wishes. However, we knew what those wishes were, and none of her doctors felt we would be doing her any kindness to put her through any more.

Your family might want to talk to local Alzheimer's support organizations to connect with others who have gone through the late stages and had to make various hard choices, and also to find out about hospice alternatives and palliative care supports. There are tremendous supports available, and I'm sure she would qualify for them, should you so choose. Give yourself permission to consider every option.  You want to come to the place where you are all behind the plan, so there is no dissention among family members. You need each other.  

I know this is rough on all of you who love her, but the last days, whether from Alzheimer's or cancer, don't have to be frightening. This is harder on you than on her - she is already quietly shutting down. You are the ones with the harder task of standing by and letting her fly. She is so, so lucky to have loved ones around her.

In a real way, the times I've sat by the bedside of someone I love in their last months are among the most treasured and transforming experiences of my life. Its hard to put into words - but think how lucky you are to be able to there for her, and be the priviledged witness to something truly holy - the gentle close to her story. Every moment of her life has been a gift, and now you have the gift of being there for her. What a journey its been!

Hang in - you have to know you and your brothers are a testament to the value of her life and love, and that she would be so proud of all of you. Not sure I have helped any, but I'm thinking of you.  

Mary G.
Toronto

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