Collectively Wise

Falling into Alzheimer's

[Anonymous Personal Story]

One of the hardest things my family ever had to do was watch my grandfather fall into Alzheimer's.

In some ways, we may never recover who we were.

My grandmother went through a period of enshrinement after he died, putting up pictures of him at his worst all over so she could sit and cry when she saw them. It's been almost a half a year since he passed away, but we lost him two years before that, for the last two years, he had not been himself. Not the grandfather we all knew.

Before the Alzheimer's, he was a retired physicist who went to a weekly singing group, helped tutor us and other local kids in math and science and donated more then forty hours a week at tax time to our local branch of the New York public library system. He never just did something for anyone, he made us work through how to do it while he helped and taught with other examples.

She Had Alzheimer's, So They Say (Part 2 of 2)

[Anonymous Guest Post]

Since both our names were on my mother's banking stuff, we both had to sign for anything. But in order to do that, after my mother was admitted to the hospital, one of us had to have power of attorney. Reluctantly, since my sister had a car, I allowed her to be the one. We got the necessary paperwork from an attorney I knew; took it to the hospital, and convinced my mother, somehow, to sign it. We simply told her the truth - that we needed access to her money and the ability to sign for her since she no longer could.

My mother still couldn't remember how to write her name, so my sister "guided" her hand. We had it witnessed by a nurse. Done. It was then notarized, and taken back to the attorney. My sister now had power of attorney. Next step, the bank. If my mother had any money of her own, that would have gone first to her care at the assisted living center before medicare would kick in. So we did the only, according to my sister, that is, logical thing. We withdrew every cent and divided it among us. We each got about six thousand dollars. Or seven, I forget. My sister was estactic.

He promised he would never put them in a nursing home.

[Anonymous Personal Story]

I am originally from Long Island, New York but in 2002 I moved to Seattle, Washington. When I turned 36 I met a man and knew I had finally found the “ONE”. But first we shared something in 2006 that made our relationship stronger. I began caring his terminally Father.

I had the rewarding experience of taking care of him in his final months with his body so riddled with cancer the only option was to make him as comfortable as possible. I do regret however, that I never knew him before he got sick because the strength he showed even in his final days would put most healthy people to shame,but he never once complained, not even on his worst days.

Eight Days to Say Goodbye

[Anonymous Guest Post]

I am a 30 year old woman that’s lives in Florida. I have always lived close to my parents.

My father has been ill for about 5 years and all the doctors that he saw could not figure out what was making him so ill. He was unable to eat because it was painful; he had rapid weight loss and constant abdominal pain. My father had tests run, but I do not believe they ran the appropriate tests. The doctors gave up and told him it was all in his head.

In July of this year, my father was taken to the emergency room for painful abdominal masses; my father was diagnosed with stomach cancer. He emergency room doctor sent my father home with hospice care.

Diabetes and My Mother

[Anonymous Guest Post]

Immediately after my marriage we made a pilgrimage tour to Cape Comerin, which is meeting place of three seas. The Arabian Sea, Bengal Ocean and the Indian Ocean. Other than the geographical importance as per the Hindu mythology this is a holy place of Goddess Kanya Kumari.

During the tour my mother, who was then about 45 years met with an injury on her left leg thumb. Without ignoring the small injury we went to the nearest Clinic, cleaned the injury and dressed it properly. After the tour I went to my work place which was about 100 km away from Home. My wife also joined with me and at home only my mother and aged father were there.

My mother was a hard working woman that she managed to run a small diary farm in our residence premises. She was of above average profile and weighed more in proportion to her height and age. A healthy woman of dynamic nature. She wakes up at 4’o clock in the morning and manages the diary and give supporting hand to the labors in up keeping the cattle shed clean. She sleeps by about 10’o clock in the night. I observed that she is consuming more diary products to keep up the energy for hard work and become fatty.

I used to lie down next to [my father] and take care of him, as if he was my child.

Illness, in any form, often leaves a person in predicament . The condition of those who suffer from chronic diseases and cannot take care of themselves is so dissuading that the patient mostly prefers to refrain from normal activities and live in a state of isolation. In many such cases, the affected are left in the lurch, with their own family members either unable or unwilling to provide the much-needed care. For those who reach the terminal stage of their life owing to illness, there is nothing to replace love and care as they largely help to soothe their emotions and thus offer peace amid bewilderment.

The experience that I have had in taking care of my father for an extended period of over five years before he ultimately died in 1997 in the Southern Indian metropolis of Chennai (formerly `Madras’), when I was 28, is not only unforgettable but also something that I would like to share with the society, hoping that it educates care-takers of many other parents, struggling elsewhere in the world, to shower love and affection on them in times of such serious health crisis.

Soon after my father was diagnosed with acute renal failure on account of multiple stone formation and put on dialysis (after one of the kidneys that was severely punctured by the stones was removed), he looked physically very fragile and mentally more sick, demanding round-the-clock attention from the family to carry on his day-to-day activities. His bones were so brittle that a slight fall could have led to multiple fractures and he was also suffering from sudden loss of memory. Most of his problems , were due to his decades-old smoking habit, supported by occasional drinking, that surprisingly died down only after Doctors warned him of his nearing death.

Advanced Directives: Let your family know your wishes

Two weeks ago a distant uncle had blood clots from recent back surgery lodge in his heart and cause a massive heart attack. By the time he reached the emergency room, he’d flat lined six times, leaving him comatose and, as it was determined later, with severe brain damage. The hardest part for his wife, daughter, and other family members—he had no Advance Directive.

While I’d heard of a DNR (Do Not Resuscitate) order, an Advance Directive (also called an Advanced Health Care Directive) was a new term to me. In essence, it’s healthcare instructions in the event someone is no longer able to make decisions for him or herself. According to Wikipedia, a living will is the oldest form of directive. Living Wills aren’t recognized in California, though can still offer guidance to medical professionals and loved ones. Some Advance Directives include a medical power of attorney, or health care proxy, to make decisions on your behalf.

For state-specific forms: http://www.caringinfo.org/stateaddownload

In the late 90’s, Aging with Dignity, developed a combination of a living will and a health care power of attorney, called the Five Wishes. Wishes 1 and 2 meet legal requirements in 42 states. Wishes 3 through 5 address more general issues of comfort and spirituality. This is a general description from Wikipedia:

Wish 1: The Person I Want to Make Care Decisions for Me When I Can't
This section is an assignment of a health care agent (also called proxy, surrogate, representative or health care power of attorney). This person makes medical decisions on your behalf if you are unable to speak for yourself.

Wish 2: The Kind of Medical Treatment I Want or Don't Want
This section is a living will—a definition of what life support treatment means to you, and when you would and would not want it.

Wish 3: How Comfortable I Want to Be

Remembering your parents

June has always been a hard month for me to get through. Right around Memorial Day I start getting that knot in my stomach and prepare myself for the month ahead. Both my parents birthdays were in June and then there's also Father's Day.

Three reminders of them not being here is still hard for me, even after all these years. My husband and others have noticed that I'm very sensitive and emotional during the month. Sometimes a little short fused on certain days. I don't mean to be, I guess its just my way of dealing with the loss.

For some reason this year I was realizing how long they have been gone and how old they would be on this birthday. I think of all the things they were not here for. I wonder what it would of been like to have them here to watch my daughter grow up and what kind of grandparents they would be. This June I was able to do something that really helped my grief. I took a few days away to where my parents ashes are scattered.

This is how Alzheimer's had an impact on me.

My dad began experiencing early onset Alzheimer's when I was in High School.  His mother died of Alzheimer's, his older sister died of Alzheimer's, and 2 of his other sisters died of brain aneurysms.  We noticed the little things he did that pointed in this general direction fairly early.  Paul W. Falkner, my dad, was a highly intelligent man and could fix just about anything.  If he didn't have a part to fix it, he would create one from scratch.  He started putting masking tape notes on things to serve as reminders.  His coffee pot would have a note that said, "take out the trash".  The bathroom mirror had a note that said, "brush teeth".  Little things like that.  Then his brief case became a post it note board...pick up snacks for work, fill up with gas, buy cigarettes.  His job had him under evaluation and he was sent to a Psychiatrist.  I remember the call I got from my mom the spring after I graduated high school (1993) informing me that the Psychiatrist confirmed our biggest fears.  Early onset Alzheimer's...dementia...

My dad kept working at lower and lower capacities.  I began driving my dad back and forth to work after his summer vacation in fall 93.  He got up to go to work after his 3 week annual summer vacation and forgot how to drive.  He walked up to his (my parent's) bedroom, sat at the end of the bed and told my mom that he didn't know how to get to work.  The company was buying him time by setting him up on the loading dock.  This lasted for a while...until he had his 30 years in and they let him go. 

Hospice Helped

I went through hospice with both my parents. It was a lifesaver. With my Father, it was only two weeks but it was the first two weeks that I knew he wasn't in pain, he wasn't suffering and he was being taken care of by the most compassionate, wonderful caregivers I had ever met. The first night I left him I could breath a sigh of relief knowing he would be ok and that they would call me if anything were to happen.

With my Mother, she was put on hospice because at the time we thought she had cancer and on top of already having Alzheimer's it was the only treatment we thought would help since we could not operate on her. She was on hospice for over a year while in the care facility. I had a team of amazing people who helped me every day. Nurses, social workers and caregivers. They helped manage her pain and her behavior. They were gentle and caring in everything they did. They were there for me, giving me the facts and helping me get through each day. When things took a turn for the worse and she fell, breaking her hip and then developing pneumonia, they stepped up to the plate and did everything possible to keep her comfortable and keep me posted. They explained the death process to me which helped more than anything. It was bizarre to watch my Mother talk to her "Father" while under the pain medications and seeing things that weren't there. They told me this is all part of the crossing over. She went peacefully with me there by her side for which I am grateful. I didn't feel so alone through a very painful situation with them there 24 hrs a day to help me.