Friday, August 10, 2007

A Story about Alzheimers: Paul and Mary

The names and identifiers have been changed to protect confidentiality. The facts of the story are true.

Paul and Mary were soul mates. They were best friends, lovers, and enjoyed each other’s company above all else. Even after fifty years of marriage, Paul always greeted his wife with a kiss when he returned home from the office. These days, however, his eyes watered a bit as they lingered on her mismatched outfit and the cracker crumbs clinging to her shirtfront. He watched her float from room to room in the house now vacated by their grown children as if seeking sanctuary from the enemies that were slowly stealing her memory.

Over the next seven years she declined rapidly. She kept lists of the years of her life and the key events that occurred. She kept lists of the names of her grandchildren and children. Eventually she could not remember where she had placed her lists. She railed that no one listened to her or understood the word salad she spoke. She sat for hours in an arm chair, eyes unfocused, her nails scratching the fabric as if trying to claw her way out of a locked room.

As time went on, the daily care tasks became more difficult. Paul helped her bathe, get dressed, eat, and even use the toilet. As she started to wander the streets in her bathrobe, he began to bring her with him to his office. She sat in a chair, sedately watching him with empty eyes while he worked. His children were worried about the strain on his health.

One evening, Paul did not answer the phone when his daughter called. Alarmed, she went to the house and found both of her parents on the floor outside the upstairs bathroom lying with their heads touching. His face was contorted into a grimace, and his skin was pale and cold. Paul had died of a sudden heart attack. The daughter noticed a ring of white capsules surrounding his torso. She understood that Mary had poured a bottle of pills over Paul and then curled herself around his body, protecting him as best as she could. She was still alive.

Was Paul wise, or blinded by love and tradition? Was he noble or naive? We are tempted to impose our values onto this situation. Some of us may think Paul was heroic and hope that's how we would behave. Others may think Paul was foolish to take on such a high degree of caretaking responsibility - at the expense of his own health, thereby leaving Mary alone.

What do you think?

Here are a couple of good Alzheimer's sites for resources, medical updates, support for patient and caregiver:


Anonymous said...

This is an amazing, poignant story! Thank you. And I love your writing style. I hope your new blog takes root and finds the audience that I know is waiting for it.

Dave deBronkart said...

It's a really good question, Barbara. One of my favorite movies is The Notebook, about a couple where the wife has Alzheimer's.

I've never been involved with the disease or even seen anyone with it, that I was aware of. So all I can do is imagine. With some couples, the desire to be together, no matter what, overwhelms all else. It would seem tragic to split the couple.

It always seems that the most precarious moral questions happen right at the edges of life. I know that I personally would prefer that everyone be well cared for - but I shy away from dictating where the borderlines are.

anima said...

Dear Barbara,
Roanne, my sister-in-law (through marriage to her sister Carol) sent me your blog.
The personal experiences you write about are very moving and should help bring those who reflect on these life issues to a deeper awareness of their very powerful spiritual energies that can heal our beings.

Unfortunately, it's too often those people who are already attuned to these realities that care to read about them. I wonder how do we sensitize those who have no clue about these seemingly useless, esoteric and irrelevant things.

For most people, if it doesn't produce a "rush", a "quick fix" or make me "richer", why bother?

Roanne may have told you that I'm a clinical psychologist and professor of moral philosophy and psychology. I also do a considerable amount of media work in both the French and English media here in Quebec. I therefore meet with many people of all ages, socio-economic levels and of varying beliefs.

Many, if not the majority don't know anything about the spiritual dimension of their beings. Traditionally, the word "Gospel" means "good news". Well I think that we have to go beyond the boundaries of religions and inform everyone that they are not reduced to the material, but that they are also intrinsically, ontologically and metaphysically spiritual. Now that’s really good news!

Wish you the very best success and happiness in both sickness and in health,

Pierre Faubert
514-999-3900 (cell)
514-934-1220 (home)

Barbara Kivowitz said...

Dave and Anima (Pierre)bring up the realms of the moral and the spiritual that are part of our beings and can emerge in profound ways during illness. Illness can be a powerful constrictor -- narrowing our focus to the next doctor's appointment or the next pill to take. If we let it, it can also be a gateway to deeper parts of our consciousness.

For me, diving into those deeper waters often distracted me from the physical pain. And I while I can't say to what extent it actually helped me to recover physically; it sure made me a more whole, less fearful, less controlling person.

I think this specific topic - illness and consciousness (and healing?) deserves more attention. I'll write about it soon - and invite others to also

Kathy NC said...

I had to stop crying long enough to post this comment. What a gift you are to people going through a similar situation as yours. PLEASE keep writing. Here's mine:

Honoring my Father

My name is Kathy, and I am the primary caregiver for my 79 year old Dad who has Alzheimer's disease and lives with me in North Carolina.

I am writing a daily blog that shows the lighter side of caring for someone with dementia.

Please pass this link along to anyone you feel would enjoy it.

Thanks and Good Luck,

bermudabluez said...

Thank you for writing such an amazing story. Have you seen the movie, "Away From Her"? It is truly a special movie. And, it is so very true. My mother suffered for years with Alzheimers. It is a devastating disease and one that I personally found to be somewhat scary at times. I felt so inadequate that I could not reach my mom. Every now and then, I'd see a glimmer of recognition, but then it was gone. She got to the point where she told me she did not know who I was. That was very, very difficult. I hope you continue with this blog as I think it could potentially help alot of people. Blessings to you.

Barbara Kivowitz said...

The slow devastation of Alzheimer's is indeed frightening. And those glimmers of awareness are both wonderful and tragic. I'm sorry you and your mother suffered in this way. Thanks for sharing your experience.

Anonymous said...

I am the 60 year old wife of my 69 year old husband with Alzheimer's. I recently placed him in a small residential care facility. It was so much more difficult than taking care of him at home but I just had to do it. I am now, just a few weeks later, at ease with my decision. No one should ever question a decision like the one I just made or the one in your story. No one knows the grief, pain, loss, loneliness, fear, terror, guilt, and well you get the message, that I felt for the last 5 years of our 18 year marriage. It is bad enough to lose all one's friends and feel the distance from one's family from their own personal fears of Alzheimer's disease. But then to be judged just adds to the pain. So the moral high road is an individual one. No one can possibly know unless you have walked that road in my shoes.

crazymom said...

I have a mother suffering from Alz. who is at home with my stepfather. He is not that well with some health issues and they are both in their seventies. I live three hours away and have four children and two grandchildren and my husband is in Iraq. She asks for me all the time and it breaks my heart. I worry about him and his health and his patience with her, he has anger problems that we all dealt with over the years. But he loves her very much. He wants to take care of her like she did him all those years. As for those judgemental people they are afraid of being judged, and they are usually ignorant of the issues anyway. God knows your heart and that is what matters, don't let them get to you!

Barbara K. said...

Anonymous and Crazymom - thank you for sharing your stories. There is an infinite range of responses to living with Alzheimer's in a family member. You are both so right - how can anyone else claim to know what actions within that range are right for someone else. I wish you both strength.

Patti said...

Paul and Mary is almost my story. Mike has had AD for 10 years. Is now only 73 yrs old. I had triple bipass surgery 4 years ago (and a mastecomy two months after bipass) I took care of my Mike for about 9 months following my surgeries. But Mike was falling, I could not get him up he did not communicate was wandering, in pull-ups, unable to do any personal hygiene and I finally relented and placed Mike. Today, Mike is lifted from bed to wheelchair, his body is very rigid, he's on a duregesic patch for pain, on pureed food and Im sad
I still love him dearly, and cry after each visit (3-4 times a week) and at nights. I will NOT use antidepressants, He was the most loving, gentle soul God ever created, a fabulous dad and husband. I can sometimes squeeze myself along side him in bed and sing "our song" Only You to him-I've prayed for 10 yrs for his healing, now my prayer is that he is pain free because he does not understand. Anyone out there, thanks for listening God Bless Pat