Expert: Mary Gordon - 5/6/2010

Question
Dear Mary,
My 85 year old father was diagnosed with Alzheimer's disease 9 years ago. His most recent mini-mental status exam was 12. He also has adult onset diabetes and is on metformin and glycazide (and aricept, memetine, blood pressure meds, lipitor ). He is cared for in the home that he has lived for the last 60 years by my mother, age 83, who very much wants to keep him at home (at least as long as he is able to get to the bathroom on his own).  Until today, she was managing very well, but tonight, while she was at a church meeting for the first time in a month, and my father was at my brother's apartment with my two nephews and my older brother, my father suddenly complained of "feeling like hell", with shortness of breath. He denied any pain. Initially, consideration was given to calling an ambulance but I was consulted by phone ( I live in a different province) and I expressed concerns about the negative impact on his cognition and the fear it would provoke and he was adamant that he just wanted to go home. So one brother went to get my mother, who initially wanted to take him to the hospital but when she heard him say he didn't want to go, they ended up taking him home (a mile away).  both of my brothers had to help him with the stairs and getting into the car and getting into bed and although his shortness of breath resolved within minutes, he remained extremely weak, the most weak my mother has ever seen him.  I wonder if he suffered an MI, pulmonary embolus, valve rupture, etc. and would not want to deny him an "easy" intervention if one were feasible but question whether prolonging his life is for him or for us.During my most recent visits last month, when it was apparent that he is rapidly becoming more frail and fatigued, my father expressed for the first time dissatisfaction with how he felt and it is evident that he has lost interest in everything that used to give him pleasure other than sitting outside on the patio for brief periods and of course, having my mother close by. I am having second thoughts about the decision we made not to go the ER route and would really appreciate your thoughts on the situation.
Elaine

Answer
Hi Elaine, you and your family are very wise to be thinking through these important questions - these are not easy decisions, and you are coming to the cross roads.

I know you can look ahead and anticipate that what comes next for him is not happy. My mother in law lived two full years in the final stage. She could not walk, talk or feed herself. She was incontinent. She did not know where she was or who she was with. She spent her time propped in a chair or bed, sleeping, staring into nothing, reacting very little to anything in the environment. It was heartbreaking and brutal on everyone, in part because it was the last thing she would have wanted for herself - and it went on and on, getting worse and worse. It was as though she herslef had almost disappeared and her body soldiered on.

Unlike your dad, she was extremely healthy other than the dementia, so she ultimately died from the very end stage of the dementia itself - they get to the point where their brain can't tell their body what to do, they become thinner and thinner, their organs and immune systems shut down, and they finally drift into a coma and pass away. It is a very slow, grueling process - during which the entire family was consumed with grief and guilt because we prayed that some health complication might mercifully carry her of sooner.

We had discussed options with care staff and everyone agreed to palliative care only. The staff and doctors were actually relieved we had come to this decision.  We had a DNR (do not rescusitate order) for her. She was to be kept completely comfortable and free of pain, loved and cared for and everything possible done to ensure her serenity and contentment. We decided that there was no further point to "curative" treatments, so we would not have allowed frightening or uncomfortable tests, procedures or therapies - there just was no point when there was no reasonable expectation that she could be restored to any better quality of life. She couldn't understand what was being done to her, much less cooperate, so we couldn't see much to be gained by all the poking and prodding. We also decided that tubes and IVs were not something she would have wanted, no ventilators, no machines - we wanted "high touch" and "low tech". Our experience with hospitalization in later dementia was very upsetting as well - they really have no idea how to manage a person with advanced dementia, and despite family spending as much time with her as possible during her admission, we felt it was extremely disruptive and distressing to her, and actually of detriment to her peace and contentment. So we made a conscious decision that we were not going to consider trips to emerg or admissions to hospital for treatment. In effect, we decided the hospice approach was the most humane and loving for her and for everyone who loved her - and we did not come to the decision lightly.

Surgery in specific was something we would not have considered, other than to prevent suffering, such as to stabilize a broken bone. For people in later dementia, anesthesia itself is devastating. It almost always causes both short term delirium, and more distressing, a permanent and severe decline in cognition. No one really knows why this is - it is particularly true when the surgery involves the heart.

Given that your father can still walk and talk, and is still continent, he may not yet be at the stage where you decide palliative measures only are the way to go. It is good that you are thinking about it and discussing it - for some families, it is a taboo subject, or wars break out between those who want every medical intervention possible employed to keep their loved ones alive and those who want only less invasive measures.

You may want to take him to the doctor for a physical examination and frankly discuss his condition and the options with the doctor. What does the doctor feel his life expectancy is likely to be, given that your father is an elderly man with a constellation of health concerns. His time is limited no matter what you elect. What will his remaining time be like? What would he or your mother want for him? What can you and the doctor do to make sure his final time (whether that be months or years) is close to what he might want? What programs and supports might your family qualify for to help your mother cope?

Having some idea of what the doctor anticipates for him, in terms of a prognosis might help you to make some decisions . You have to have a clear idea about what the goals for his care are - and if you do elect to have any kind of treatments - what the risks and benefits might be. There are tradeoffs with everything - and you have to know that what your father gains from any medical intervention is worth what he might lose - and it isn't just physical losses we are discussion - it's all those intangibles like serenity, feeling safe and secure, loved, content, not frightened or confused etc. You want to be able to look back at this and feel you did the right thing, with no regrets.

We certainly feel terrible that my mother in law ever developed Alzheimer's. It was crummy and unfair and cruel, and she didn't deserve such a nightmare blighting what should have been happy golden years. Having said that, my husband (an only child) and I don't regret at all the care choices we made on her behalf. We tried to think of what was best for who she was at each stage of her illness.

I don't know if this helps or not - and I've certainly blethered on. It's a very personal subject, and one that people have many opinions on. It's really hard, because making choices that affect other people requires us to be true adults - to put aside our own fears about illness and death, and a lot of cultural overlay that says we should value life at any cost. We have to be able to really think with love and clarity about what the person really needs and would want, and about quality of their remaining time.

Thinking of you. Hope you take away what works for you and yours and leave the rest.

Mary G.
Toronto