Who's in Charge? February 27, 2013

Visiting with my husband today reminded me about one of the main rules of caregiving: let the patient lead whenever possible even with a loved one who has Alzheimer’s disease. For example: I arrived at the unit and slowly walked to where my husband was sitting at a dining table, seemingly staring into space. I said nothing at first, just sat down next to him. When he turned his head and saw me, he immediately stood up, held out his arms for a hug and a kiss, made some incomprehensible sounds and said, “Let’s get out of here,” which is a sentence I have heard often.

 I agreed and stood up. After standing a few minutes, my husband asked me if I would like to sit down and talk for a few minutes. We sat back down in the same chairs. A few minutes later, Bob said, “Let’s go for a walk.” We stood up and walked outside the front of the building. After 50 yards, he said, “Let’s turn around.” It was a bit windy.We sat on the porch for a short while, but the sun was too strong. Then he wanted to go inside, claiming a need to use the bathroom. Entering the unit again, he forgot about his goal until we walked around the back yard several times; then Bob wanted to go inside his room.

He did use the bathroom on his own, but wanted to return to the people in the main room soon thereafter. When it was time for dinner a care worker escorted him to the table and I left.

Perhaps this was an uninteresting visit for me, but it was a quite satisfactory day for my husband as he felt in charge of everything we did.

 

Facing our issues February 24, 2013

 

Sunday morning, and it is a Jewish holiday called Purim; my daughter and grandson will accompany me to the annual carnival which celebrates using feminine allure to sway the decisions of a king to save the Jewish community from destruction by a despot! Last evening I attended a screening of an Israeli film which portrayed the difficulties of preparing for life as kibbutz residents age and their children move on with their lives away from community. Melodrama ruled as old sexual relationships surfaced which destroyed families from within. The message indeed-- we are all perennially faced with conflict; how we face these issues is what matters most.

As caregivers for Alzheimer’s and other dementia afflicted loved ones, we learn to take one day at a time, to place one step, breathe and go on to the next step as Robin Roberts said in her moving episode on 20/20 last night about her recovery from serious illness.

We must save our worrying energy for the times of crisis and lessen any tension we feel by asking for help when we need it, by accepting ourselves and our limitations, by emphasizing our strengths and our skills, by being there for our families and friends, reaching out to others in need and enjoying each day to the fullest.

Unexpected events February 22,2013

I visited with my husband Bob yesterday at the memory care center.It was a chilly 50 degree Arizona day; our light hoodies were no match for the wind. We sat inside his room. When he asked what we would do, I shrugged my shoulders and he said,"We'll just take it easy." Great idea. He sat in his recliner and I picked up a magazine, moved my chair near his and began to turn the pages.
"Let's go get a cup of coffee," Bob jumped up. My husband's Alzheimer's disease has robbed him of short term memory. When he sits and he's not engaged in doing something, he does not remember why he is sitting, so he gets up to find an activity which will organize his mind.
When the care worker brought him a cup of coffee and some graham crackers, Bob took one taste and said,"This is hot liquid, but it doesn't taste good." I think they used powdered creamer, which I know Bob never liked. He can taste the chemicals in it.
As we were sitting at the table, a woman entered the unit and asked the worker to open Bob's room door. Why was she there? I wanted to know.
It was the replacement hospice worker, "a little late" (at 3:45 pm) to give Bob a morning shower. I asked her to leave, that Bob could wait another day for his shower. She passed by the table where we were sitting on her way out, introduced herself to Bob, who turned to me and said, "You can leave now. You don't have to do anything for me. She can do it."
I was flabbergasted, but pleased to be wrong. They walked into Bob's room as I chatted with some folks. A few minutes later, out they walked. "Bob permitted me to shave him," the worker reported, "But then, as I started to undress him, he indignantly said, 'What are you doing?' When I explained, he said 'Stop that now.' and he walked out."
"Let's get out of here," Bob said to me. "This place is crazy."
It is so important to keep to the simple routines for memory care residents---at home or in a care facility. They are rattled when someone new does something totally unexpected.
 

Memories February 19, 2013

My grandson and I spent the day at the Arizona Science Center where we saw an exhibit on Alzheimer's disease as part of the section about the brain headed by a large photo of Albert Einstein.
We saw models of a snake's brain, a rat's, a cat's, a monkey's and a real preserved human brain. We tried to assemble or disassemble metal puzzles that are intersected in seemingly impossible ways; we placed helmets on our heads and practiced remaining more calm than our opponent so that a ball in a tube moved across the table, directed by low alpha and theta waves. Grant practiced facial recognition and letter recognition, realizing that information when chunked, is remembered more easily.
The description about Alzheimer's disease highlighted a remembered story in the early life of a woman who had grown up on an Arizona- New Mexico ranch. As a grey-haired person she was able to recount this story of personal responsibility easily, contrasting with the inability of Alzheimer's diseased people to remember anecdotes and insinuating that memory is the key that differentiates humans from all other mammals.
We who are care partners of loved ones who have any form of dementia, including Alzheimer's disease know that is not true.
As my husband's memory declines, he has lost the anxiety that controlled his life. He worried about supporting his family. He worried about his children's safety. He worried about the stock market's activity and more recently, he worried if we had sufficient gasoline in the car.
Now he is peaceful. He can enjoy activities such as playing catch with Grant in the backyard, he gets pleasure from his daily routine and from the several people who greet him warmly each hour.
He hugs me lovingly when I arrive . And when asked he still says, "That's my wife, Phyllis."

The 99 Cent Loaf Sunday, February 17, 2013

The air, a balmy 74 degrees, the first wonderful Arizona day in weeks; we decide to take Bob to the park to feed the ducks.  Entering the car easily, we park; he sees the lake and we walk down the embankment. I hand Bob a slice of fresh white bread and he throws small pieces into the water. A crowd of people, ducks and birds surround us; Bob wants to leave. We find a protected iron-fenced patio used by fishermen; standing there Bob feels safe again and happily tosses morsels of bread to the ducks as he eats some, too.

One of the children at the park threw her potato chips to the ducks, another fed the ducks cheerios. Care partners of folks with advanced dementia also have to use fresh duck food; the stale bread my mother saved for ducks won’t work now.

When Steve and I entered the memory care unit Bob was seated in one of the leather chairs as a care worker tossed a soccer-sized Nerf ball to each of several residents. Bob was attentive and focused. He caught the ball each time it was thrown to him and he threw it back, remaining seated for more than ten minutes. Some residents modified the game, throwing the ball to each other, but Bob remained focused on the care worker. It was a pleasure to sit at the sidelines and see him participating happily in an activity.

Bob was definitely out of his comfort zone at the park; he felt much better when we arrived back at his home where he was promptly escorted by another care worker to the dining table for dinner. I value the day we spent together, seeing Bob get fresh air, watching him enjoy feeding the ducks and the birds. I wouldn’t take Bob by myself but thanks to Steve we manage safely.

Happy Valentine's Day February 14, 2013

Love and Marriage and Then comes…unbidden Alzheimer’s disease to spoil the retirement years we looked forward to during our working lives. It is hard not to feel sad on Valentine’s Day when the memories of past Valentine’s celebrations are one-sided. I remember the little gold love knot earrings my husband bought on our first Valentine’s Day and the tiny heart dotted with semi-precious stones on a thin gold chain my husband purchased for me the following year; I wear them every year on Valentine’s Day to remind myself of our second-time-around miracle. Bob used to remark every time he saw them, “How lucky I am to have found you!”

We were both lucky; all each of us wanted was not to be alone, Bob after his beloved wife died of cancer and me after the last of my three children was off to college. Many of the attendees at my Alzheimer disease caregiver support groups are participants in second marriages. One person admitted feeling guilty placing a spouse in a facility although it is not safe to keep the person at home any longer; the guilt feelings from the first divorce, the feelings of failure creep into the current decisions.

Love changes over time and many different loves find their way into our hearts during our lifetimes. Each has a place and a time of its own; we don’t love our ill spouses less, merely differently. And sometimes it happens, as it did to Sandra Day O’Connor, our former Supreme Court Justice, our spouses find someone else to hold hands with and to walk with at the care facility and hardly recognize us when we walk in the door. Although my dear husband knows who I am each time I visit, he also holds his arms out to hug all of the familiar care workers and even some of the other residents’ visitors when they arrive.

February marks one year since Bob entered Arbor Rose Senior Care. He is content, no longer angry or agitated. His health is good and the care he receives from the workers is loving and caring every day. I wish them all a Happy Valentine's Day!

WHO does WHAT? Tuesday, February12, 2012

In younger families today, much of the role definitions have changed; there is less "women's work" or "guys' work" and more sharing of household tasks. But with couples of my generation and older, the habits of a lifetime are so difficult to change.

The problems of course increase when one partner develops dementia and can no longer do the traditional tasks he or she has accomplished for years. It becomes problematic if the well partner neglects to pay attention to what is happening. We don't want our lives to change. After several holiday visits, I heard of parents' homes that needed to be cleaned of tub soap scum-what  a way to spend a visit! I heard stories of checkbooks not being tallied; older folk are not involved with online banking although they often shop online. It's so easy to click an order!

Who is keeping tabs on the budget? Sadly, there is more money to spend in some families as they have stopped outside socializing, shopping for clothing and going to the movies.

Many visitors return feeling guilty they are not living closer to their relatives who need emotional support and caregiver assistance. One parent is physically challenged and the other is in the beginning stages of some type of dementia. How can they help?

Each region of the country has a federal agency called Area Agency on Aging. They can help by providing resources for respite care, social work visits and information on alternate living arrangments.

Caregivers, please ask for help, join a support group. Don't overlook what is happening. Don't merely ignore the unmet chores of the household if your spouse and you are unable. Call your family members, your religious community center. Alzheimer's disease and other dementias are physical illnesses; they are life-limiting and non-discriminating. They hit us all regardless of any classification. Do yourselves a favor. Help me make 2013 the year of changing caregiving from crisis to comfort.

Connections Sunday, February 10, 2013

JJ Rousseau wrote about the illusions we live with which separate us like veils from one another; JD Winnicott advised parents to be “good-enough” so that children by being frustrated learn to be motivated. Now Adam Phillips puts these thoughts together in his new book Missing Out. “People become real to us by frustrating us. If they don’t frustrate us they are merely figures of fantasy.”

We see in each other basically our idea of what we want the other to be; only by working through a frustrating situation do we really see the other as a separate individual.

So it is with parents and children as well as with spouses. Often our most real relationships are with our siblings if we are permitted to face frustration moment by moment as children in the same household.

When the fantasized “other” no longer can fulfill the requirements of our fantasy, we have to rethink and reformulate our relationship. Sometimes problems occur when the adult child tries to parent the older parents by managing their money or where the older couple lives.

Sometimes the parent does not let go of his/her dreams and ambitions for the now adult child and continues to treat the person as a child, criticizing and demanding more than the person is capable of achieving.

And when a spouse develops a debilitating condition? Most times the transition is slow and both parties adapt. But when any one partner refuses to see the reality of their changed lives, conflict occurs because the fantasized relationship no longer exists, no matter how much anyone tries to hide it.

The adult children still expect the gifts and total unconditional love they fantasized about or even received in the past; the parent is no longer able to function in that role. Often the child gives up on the parent and separates him or herself or blames the second marriage partner for “changing” the parent.

And the adult children and the spouse who can accept the reality? We caregivers then assume greater and greater responsibility, getting assistance wherever we can, are content with our memories, yet we grieve long term for the losses of companionship, physical joy and help and often financial providership.  We feel at the same time rewarded by a recognition from our loved one who has Alzheimer's disease or another form of dementia, by a smile or a loving word which validates our need to be present to enjoy the last years, months, days and moments of our loved one’s life.

Some good ideas Tuesday, February 5, 2013

Green tea and red wine extracts interrupt Alzheimer's disease pathway in cells EurekAlert (press release) Alzheimer's disease is characterised by a distinct build-up of amyloid protein in the brain, which clumps together to form toxic, sticky balls of varying shapes. These amyloid balls latch on to the surface of nerve cells in the brain .

Treating Alzheimer's disease with Vitamin D and omega-3 Examiner.com UCLA researchers have found that Vitamin D3 and omega-3 fatty acids may enhance the immune system's ability to clear the brain of amyloid plaques, one of the hallmarks of Alzheimer's disease. The researchers published their study on February 5 . Now here are ideas that really may work and if they don't, they will still keep healthy folks healthy longer. so no matter what your age, drink green tea as I do and I also take a 250mg resveratrol every evening. Women need more vitamin D3 than guys do, so check with your physician after a bone density test. Read the whole study of each of these findings online. Since science is so slow on finding a cure, let's work by ourselves on prevention techniques which are common sense whether we get Alzheimer's disease or not. Beware of weight gain and sugary or diet sodas; diabetes is also shown to predict more Alzheimer's disease.

When? Sunday, February 3, 2013

“At what stage is my loved one?” Caregiver’s of Alzheimer’s disease want to know. As an Alzheimer’s Association support group facilitator I present a printed form with a checklist of symptoms showing the Stages of Alzheimer’s disease in four columns. I always add the advice that some checkmarks may be in different stage groups and that the symptom pattern will change.

What we really want to know is how long my loved one with Alzheimer’s disease is going to live. How long will we have him or her with us to love and to cherish and to care for? No matter which stage someone checks, no one still can tell how long we have to live. Alzheimer’s disease is not the only illness people have that will limit their lives; it is really the last illness one dies from after surviving all else and forgetting, usually, how to swallow.

People in the memory care facility where my husband lives have died this year among other causes from kidney failure, a ruptured hernia and strokes. This week my husband has a chest cold; I worry about pneumonia, but his immune system is strong. He is ambulatory, he feeds himself, he toilets himself and is able to communicate his needs to others. His personality has reverted back to the pleasant, mannerly, sweet, caring, loving person he was before his diagnosis. I am not ready for him to die.

 

 

Searching for WHY February 1, 2013

In my reading about Alzheimer's disease and about caregiving, I and others are searching for ways to help-- to manage symptoms, to improve quality of life, to offer support and encouragement. We offer assistance with the "how" of life.We don't offer medical advice and we leave it to the scientists to fugure out why Alzheimer's disease begins, why it destroys brain cells that control memory, decision-making,sense of time and direction in space as well as changes in personality.

As I watch the process unfold in my husband, I am generally more amazed at what memory he retains and how his formerly sweet self turned into an angry fearful agitated person and has now returned to this polite, loving man he used to be.

I see that my husband's language skills have gone; he can no longer respond to a question or carry on a conversation, but he can articulate clearly a sentence that is important to him. He asks for food and can say he would like an apple, for example. He can choose between a cup of coffee and a glass of milk. He tells clearly when he doesn't like something or wants "to get out of here."

But yesterday, my scientist-husband surprised me again. He sat me down on his bed next to him and said, "I know why I am here. I am a soldier and this is a facility that treats soldiers. That's why we cannot get out of here."

In amongst all those plaques and tangles still remains a part of Bob that thinks like the scientist who is always trying to understand "why."