Expert: Mary Gordon - 11/26/2007

Question
Hi Mary,

My aunt's first symptoms started about 10 years ago.  She is 85 years old.  It is about 3 year that she doesn't recognise me at all.  She was admitted to hospital with pneumonia the beginning of October.  She was also dehydrated.  10 Days ago she was admitted again with dehydration and nobody thought she will live it through.  She is a fighter and is back at the old age home.  Some days she sleeps the entire day and it is with difficulty that we wake her.  When she is so sleepy she has a blank stare in her eyes.  "The lights are on but nobody is home"  Other days she utters a few words.  She can not straighten her legs or back and lies in a foetal position.  She lost so much weight these last 2 weeks.  The other day she even sang but after this she was a few days in a comatose state.  Some days she is not all interested in food and fluids.  They did some tests in hospital and it shows her liver has some damage.  I'm glad she doesn't realise what is happening but for me it is every day an emotional struggle.  I thought of joining a support group.  I'm 31 years and have they greatest of respect for those caring for somebody with AD & who are raising a family.  I refuse to have any children as long as she lives.     

How long can I expect this final stage to last?  

She sometimes pulls her face.  Can this be a sign that she is in some kind of pain?

Is true that they have an uplifted state of mind and movement before they die?  It is so difficult with AD because you never know is it part of the disease or not.

Thank you for some other great answers to e-mails!

Kind Regards,
Clarise


Answer
Hi Clarise,

I don't think there is anyone on earth who can tell you how long your aunt will survive. She has a constellation of health problems, and is in end stage AD - which means she is very frail, and it will not take much to tip the scales. She's just like a little bird on a branch. Most people will only survive a few weeks or months at this point, but some can live on for years.

I know culturally, we truly want the person to be intact in there somewhere, but at this point, her brain damage is truly extensive, and I doubt very much she is much aware of her surroundings, or that coherent thoughts are in her mind.  She's more like a tiny newborn - she may feel things but not know what they are.  She isn't suffering - all the worries and thoughts that torture you she no longer has. I don't think they are really feel hunger or thirst. I think she is in a place where she is past the concerns of this world, happy or sad. I think the people watching over her are the ones who are truly in pain.

I know family members ask themselves how much longer can this go on because it is just so hard on everyone. The question for you is - is it time for palliative care, rather than continue to have her admitted to hospital?

I don't suggest that lightly, and I know it is very hard to reach the point where you see that the fight for her life is in itself causing suffering, without possibility of any pay off in terms of her comfort, her serenity, or her quality of life.

We did come to the place where we just decided to love my mother in law,  keep her comfortable, and stop all the poking and prodding and running around. It seemed  crueler to subject her to procedures that kept her in the twilight,  caught between two worlds. Just because we have the technology to bring someone back from the brink again and again, or to keep the body going, doesn't always make it the kind, loving or moral thing to do.

Whatever you choose, be at peace with it. This is truly a holy time - your aunt would not want you to be turning your face from life and love and children because her story is ending. Don't let grief turn you away from the miracle you are witness to - that life has its beginning and it has its end - it has a rhythm and a form - her end doesn't have to be scary and terrible. She's 85, she had many long wonderful years before she got sick and you obviously have happy memories of her.  I know you don't want it to be over, but you are so lucky to have had her, and so privileged to be here for her now. Its all about love, and letting your heart grow and expand - and yes, every time you love anyone, a child, a parent, a spouse, a sibling, an aunt - pain will be part of it at some point.

If you take anything away from this experience, let it be the lesson of how sweet life is, how fragile and brief, and what a gift every day of it is. Celebrate the people you love every single moment you are lucky enough to share with them.

The decision to have children is always a leap of faith in the future.  Its all about faith and hope, about life going on, renewing itself, and embracing new chances for happiness and love. I'm the mother of three. The first was born before my mother in law was diagnosed, and the second and third were born while she was on her journey with it. I promise you, woman to woman, your heart can hold it all. Fling open the doors and let it in, and don't be afraid of love, even when it hurts.

Its not fair that she got AD, but the real tragedy would have her life ending long ago, before you got to know and love her.  Where ever she is, you know she's proud of you. Let this be a chance for growth and perspective in honor of her.

M.