Reply from a Reader

Hi,

I saw your post regarding the Best Friends video from DailyOm.  I know you don't know me and I'm sure you have plenty of support but a book that really helped me during my mother's illness was "Making Rounds with Oscar."  I've shared it with several people suffering the terribly devastating disease that is Alzheimers.  It is a tender story about how some of us have walked the hard road of this disease.

I also read a little bit on your blog about end of life and the difficult decision to let a body shutdown and when is the quality of life gone and here's what I've learned.  After 51 years of marriage, my mother passed away last February two weeks after their anniversary. My father had cared for her in her dementia for longer than I even know. I would say the quality was probably gone the last four weeks.  The last two break my heart thinking about them even now.

This past summer, my formerly vibrant father was diagnosed and then treated for severe blockages in four vessels in his heart.  He went home twice after the surgery but he never recovered.  The third time we went home, it was on hospice.  That was late August.  I stayed with him every day.  He was chair-bound.  A once shy and very proud gentleman, he needed help with everything except eating. He never complained, was rarely cranky, and always said "thank you" for the even the smallest things.

I asked myself many times over those last months why was he suffering and where was the quality of his life.  And very near the end when I was grappling with what I couldn't possibly control, he awoke after almost a full day of unconsciousness and stretched like a sleepy little boy.  I wouldn't have missed that stretch for anything in the world...and then he ate a big breakfast. And so, though the coming days were hard, I thought to myself, "there's still quality."  Still a connection.

I am not a proponent of some of the heroic things we try to do to save the people we love or the things the medical world throws to us as treatment.  I think you have to weigh comfort over 'to what end?' but, I believe, without question, there's a plan and a path.  I think my father lived exactly the time I needed, my sister needed, our families needed, to transition us to our life without him.  He passed away on December 9th, 2014.  Tomorrow would have been Mother and Daddy's 52nd wedding anniversary.

I tell you this because I see the love in your eyes for your sweet babboo.  I don't know what it is to lose the love of your life but I know what it is to lose someone I love...two people in a very short time.  I know what it is to bear slightly more than you think you can bear.  I know what it is to be a primary caregiver and be sad and angry and exhausted and just want something so simple, it is silly.

I just wanted you to know your comment and your blog touched me.  I wish you peace on your journey and enough strength to enjoy the good moments and endure the hard ones.

I don't know what your faith is or is not but I'm going to hold a good thought for both of you and I wish you continued love on Valentine's Day and beyond.

NL

Thoughts on End of LIfe

Writing this is no easy task. Based on having seen Lieberman residents rushed to the hospital in an ambulance, I began wondering under what conditions is this necessary?

While Gregory was still sentient, he and I decided that we wanted to be cremated, not buried. We also decided in the event of stroke, heart attack, catastrophic illness, etc ... "no heroics," "no resuscitation," "pull the plug" if there is one if quality of life is not available.

But how does one decide on quality of life (QOL?) Gregory's QOL today is very low compared to before the Alzheimer's, but there still is quality! He is still enjoying his narrow life, feels safe in his new community at Lieberman, is eating well and enjoying the food, laughs and gets silly, is communicating somewhat if you know what to listen for, sleeps well, likes listening to music and watching TV, is healthy and not in pain.

So for now, lets leave him "plugged in" since he is plugged in by himself and not ill or on a machine or suffering. But with Alzheimer's it will get worse. Much worse unless death takes him sooner rather than later. Mental/ emotional duress and pain is much more difficult to measure but I believe I will know when that time comes and at least we will be able to control it with medication.

Being in charge of making decisions like this for another person is overwhelming. My decisions are and will always be made with love and only with Gregory in mind, not any suffering I may experience as he fails. But none-the-less deciding that a person should end their days in a drugged stupor is difficult. Luckily the nursing staff at Lieberman is thoughtful and well informed and have advised me well so far.

Gregory's latest round of increased medication, is Risperdal. It is a antipsychotic medicine that works by changing the effects of chemicals in the brain and is used to treat schizophrenia and symptoms of bipolar disorder as well as irritability in children with autism. While it is not approved for use in conditions related to dementia, like many other drugs, it serves dual purposes even though dementia was not what was tested for the drugs approval.

Gregory was beginning to be uncontrollably combative, irritated, frustrated, angry, and was unable to sleep well. The Risperdal, as I was warned, caused him to be lethargic and unavailable emotionally/ socially for two to three weeks until the dose was balanced and his system adjusted.

He is now back to what I call his "former diminished self." While the drug did not bring back any abilities it did calm down most of the negative ones and that is good.

Next I need to put into writing my directions to the Lieberman staff as to when Gregory might be "rushed" to the hospital. Holding, with Gregory's permission long ago, the rights to Power of Attorney for Health (and Finances,) I am able to make life and death decisions on his behalf.

What I do not want to do is prolong his life if he is on his way home! I like that expression as it makes me feel like we came from somewhere and we will return somewhere even though I might not be able to understand under what circumstances that might be.

I especially do not want to prolong his life inadvertently, under duress of his illness, or because of the "best actions" of doctors, hospital, and medical staff.

If Gregory is working his way towards dying, I only want him to be comfortable, free of pain, and I will sit there and hold his hand or lie down next to him and snuggle until the end.

I need to think about these last things and put my end of life directions into writing. I also am aware that what I put into writing for Gregory should also be used in the event of my needing them. That's the next task.