Expert: Mary Gordon - 11/20/2009

Question
Hi Mary,
I wrote to you a week ago about my 87 year old dad with Alzheimer's and his weight loss.  He now has pneumonia and the doctor admitted him to the hospital today.  This was a very hard day as it took 4 nurses to hold him down to put in an iv all the while he was shouting, swearing, etc.  His words of course are not always recognizable.  Anyway after multiple tries they finally get it in, only to have him pull it out an hour later and the process starts all over again.  To recap, he has had AZ for 9 years, has only one leg, incontinent, does not know us but once in a while he will.  My 82 year old mother has taken care of him all this time.  My question is "how do we know when enough is enough--is giving the antibiotics the right thing to do or let nature take it's course?"  My mom is afraid that if she tells the doctor to not treat the pneumonia aggressively she will always think she murdered dad.  This is such a hard decision but he has no life, he is wasting away and yet it's so hard to just say stop treatment because every now and then there is a spark of recognition. This disease is worse than cancer. We watched my brother die of cancer at the age of 50 and this is much worse.  I know you can't tell me a definitive answer as each family must deal with this individually I guess I just needed to get my feelings out.
Thank you,
Cindy

Answer
Hi Cindy,

I know this is a tough one for many people - and I do agree this is a much more difficult struggle than dealing with other illnesses.

I can just give you my perspective - and it is very personal - so I'll blether on and you take away what means something to you in your own situation.

My mother in law was robustly healthy other than her Alzheimer's, so she survived right to the end stage of dementia. It was beyond brutal and gruelling - she lived her own worst nightmare. Bedridden, incontinent, helpless, unable to talk, unable to recognize anyone or her surroundings, unable to participate in anything - pretty much for the last two years of her life.

My husband was an only child, and it just destroyed him - he knew this was the last thing she would have wanted, but there was nothing anyone could do - we couldn't help her forward or back. Her body may have been living on, but she certainly had almost no quality of life at all. Other family members stopped visiting because they just couldn't bear it. Although my husband felt very conflicted at the time, he actively prayed some health concern would arise that would gently and mercifully ease her way.  

Sometimes there are worse things than death - and that is just my point of view. The way I look at it, we have to look thoughtfully at what we hope to achieve with medical treatments and procedures. Will they ease or increase suffering? Will they pull the person back from the brink only to return them to a steadily declining existence?  Is whatever is contemplated worth the human cost - is the suffering, fear, bewilderment etc. involved with particular medical treatments/tests/procedures going to buy the person quality time or less pain?  Sometimes the answer will be yes - for example, procedures to fix a broken bone, no question there. More times the answer will be less easy.  Longer life is never solely what it should be about. Quality of life has to be the ruling factor when it comes to the frail elderly. What's the expression...."it's not the years in your life, but the life in your years". All too often, the decisions are made out of fear of the end - mostly because we aren't emotionally ready. It takes a huge amount of strength to put ourselves out of the equation and really be able to say - this is not about me, or about guilt, this is about my loved one. What is the most compassionate, the kindest, the most loving. What would my loved one want for themselves ? It is hugely, hugely difficult to reach down to find the maturity to really grapple with these issues.  

We opted for palliative care - the nursing home had its own hospice type program. We had a care meeting with her doctor and the staff, and everyone was relieved to know we did not want any further medical intervention - and this decision was made many months before she finally passed. I guess we had just gotten to the point where we knew there was nothing to be gained for her by continuing to "fight". It had become like chucking pebbles at the ocean to hold back the tide, and rather than helping her, we were contributing to her botherment. So instead, we kept her comfortable, peaceful and free from pain. She was as content as we could possibly make her. We held her hand, we sat with her, we talked to her, whether or not she could hear us or respond.  We had a DNR order. We decided if she got into crisis, we were ready to let God and nature takes its course and we would not allow any tubes, no transport to emergency or any rescusitation.  We would have treated non-life threatening things that cause suffering - i.e. if she had gotten any skin infections or bed sores, we would not have wanted her to be uncomfortable in any way.

My husband feels very strongly to this day that he did the right thing by his mother. He does not feel guilty. We feel guilty when we have intentionally done something that we know is wrong. We feel regret when we wish it could have been different. He regrets that she ever had to go through any of it - she deserved better than to have her last years blighted by dementia. However, he doesn't regret his choices.

In retrospect, as painful as it was, and as draining, it was a time of huge growth for all of us - emotionally and spiritually. I don't know if it's modern medicine or modern life - we get so caught up in the endless action and busy making, it's like being on a ride that is spinning around so fast you are so dizzy you can't think.  I can't fully put it into words - it was like this place of tremendous stillness, where we stood up and faced down eternity - it was as though we stepped back, stopped panicking and flailing, and made a conscious decision to be fully and entirely present in the now. Never mind what came before or what might come next. Just focussed entirely on what was right for her at that moment - and we knew it was time to stop.

It was a big relief to have the clarity - and it really did help us through the long days that were ahead until she passed away. It took away a lot of the fear and doubts for all of us.

I don't know if this will help or not - I know your mother desperately wants to believe that the man she loved is somehow still inside there, intact - and I think he is intact - but perhaps not in that shell. I think the things that really made him who he was are no longer with that damaged brain and body. Again, this is a very personal perspective.

I'm thinking of you and yours.  

Mary