Separation Part Two September 27, 2013

Since I wrote the previous blog, two spouses of folks in my Alzheimer Support Group died. These caregivers each devoted the past several years to keeping their spouses content and comfortable at home, only recently beginning to tackle the difficult process of separating by placing their loved ones in a care facility.

One woman lived for four weeks in a memory care facility with the assistance of hospice; the other became ill and was diagnosed with cancer, traveling back and forth from hospital to hospital while the physicians attempted to diagnose her condition.

Traumatic separations after years of mourning the losses of intimacy formed during long satisfying marriages. Attendance at a support group during the past year and a half has helped these spouses form relationships with other caregivers so they do not feel so alone with the challenges and losses they now face. Reading my book Put That Knife Away also assisted them in accepting the fact they are not alone in dealing with the difficulties of separation and the challenges of family and well-meaning friends.

I am now on respite in New York where I walked on  Sunday in Coney Island with the Brooklyn chapter of the Alzheimer's Association. We turned the boardwalk purple with more than 800 walkers raising $117,000 for Alzheimer disease research. There will be another walk in Manhattan by the Hudson River on Ocotber 20ieth and in the Southwest chapter in Arizona on Novmber 2nd.Participate wherever you live, raise funds to help find a cure. Contact your employer to get matching funds, form a team, earn your purple long-sleeved t-shirt. Participating helps me feel I am DOING something, not merely toleratng, accepting and waiting.

Separation--Can we be prepared? September 19, 2013

All through the lives of children, parents try to prepare themselves and their offspring for separations. Some families send their children to grandparents in other states during school holidays, some children attend sleep away camps while others settle for sleep-overs at friends' homes. 

These days with so many children living in divorced families, the children spend time with one parent or the other, permitting the parents to feel and adjust to the separation from the children.

Once we have accomplished the goal of rearing our children and they go off to college or to the armed services, we concentrate more on establishing peer friendships as well as strengthening our bonds with our spouses and we must readapt ourselves when we or our friends move to retirement homes, become ill or pass away. I also hear about spouses who divorce after 44 years of marriage; the empty nest adjustment is quite difficult for some couples.

Our now adult children have to deal with the separation from family members as they pursue their livelihoods and raise their own families. With the proliferation of social media, the young of today are able more than ever to keep in touch with friends from earlier phases of their lives, reducing their feelings of isolation which plague some older adults who move and need to make new friends wherever they go.

Those of us who are caregivers for an invalid or dementia afflicted spouse or parent also separate very slowly from our loved ones. We trace the steps in reverse with our loved one becoming more and more dependent upon us as they age and become less able to perform "the tasks of daily living" for themselves. The process starts so slowly sometimes that we don't realize for quite a while that our partner or parent is not there for us--the relationship has become one-sided. Once that realization hits and we begin to be concerned that we will not be able to care for our loved one at home, we need to reassess the separation process once again. Slowly we need to prepare ourselves and our loved one by having volunteers come to the house to provide respite care for us, by asking friends and family to take turns caring for the person or by hiring someone to do so, so both parties can begin to adjust to the separation that will occur.

We are often not sensitive to the difficulty of this process; we have forgotten the pain of separation on the children's first day of school. The familiarity, the intimacy of caring for a loved one is ingrained in the caregiver and in the recipient; it is the only part of the relationship that survives, even when it is difficult. It is part of the reason deciding to place a loved one in a facility is so hard to do and takes so much time and considered thought. 

New Year's Prayer September 8, 2013

“We cannot merely pray to God to end war.
We cannot merely pray to God to root out prejudice.
We cannot merely pray to God to end starvation.
We cannot merely pray to God to end despair
We cannot merely pray to God to end disease.
Therefore we pray to God
for strength, determination and will power,
to be instead of just to pray
to become instead of merely to wish.”
                           Rabbi Jack Reimer

This prayer, found on the website of the Sisters of Saint Joseph on the celebration of the Jewish New Year reflects the desire of us all for peace in the world and for hope in our hearts. As we listen to the differing opinions of the United States' role in the spread of nerve gas in Syria, we have no good choices to make, as individuals and as citizens. 

We abhor violence but we respect the right to use violence to prevent another Holocaust. We as a country entered too late to prevent Hitler and the genocide in Rwanda; we must support our President in this most difficult decision because the cost of Iran or even North Korea usng nuclear power is even greater than Assad killing hundreds of thousands of his own people, although I suspect he aims for Sunnis, not Allowites. 

We cannot effect change within the Middle Eastern countries which are so torn by tribal loyalties they cannot work together in their common interest, but we can let go of our partisan views to unite in a common effort to save the planet from poison gases which we permitted to be bought by Syria during the 1980's when we were more concerned about nuclear energy than nerve gas components. The West sold these components to Syria- and profitted financially from the sales, short sightedly not thinking of their future power on the world stage.

Let's ask our congress to vote to support the President and wish our rockets Godspeed in their mission 

Communication Skills September 1, 2013

It takes two people at least for communication to happen- by touch, by gesture, by eye roll or by speech. My skills have developed during my lifetime to listen keenly and to read the faces of those I know well and to recognize often the mood they are in when I wish to communicate with them, either on Skype, on the telephone or in person. I find it hard to know the mood or feelings of those with whom I email or text.

My skills have been sharpened during the past few years when I visit my husband at the memory care center.I kind of know whether he is sleeping, dozing or merely shutting out external stimuli by closing his eyes, which guides my decision to let him be or to gently awaken him so he knows I am there.

When he greets me I can sort of tell whether he really knows me that day or just knows I am a familiar person   in his life. 

Sometimes he will follow an aide and leave me sitting there. Yesterday, however, he was sitting in his favorite chair just outside his room door, watching the action around him. When I approached his field of vision, he looked up, put out both hands and said "Hallelu--I'm glad you're here."

I pulled up a chair so I sat across from him and held his hands, pleased. This was going to be a good day. My husband really looked at me. I was wearing a light green t-shirt and shorts. He held out his cupped hands and said, "You really have a big body." He looked at my knees and his and attempted to pull his shorts longer, then he looked up at me again and said, "I think you should leave."

My husband thought my clothing was too revealing. Although he liked looking at me, he did not like me to be out and about dressed as I was. This communication was so strong-- and so in character for him--it felt as if he were well again! He succeeded in making me feel both appreciated and uncomfortable.

I stood up and so did he. We walked for a while as the moment passed. We played balloon toss for almost fifteen minutes until he said, "Enough." The dinner trolley arrived. We watched as the staff plated the food and gathered the others to the tables. We chose his plate, he sat down, picked up his fork and became unaware of my presence as he ate and I left.

Habits August 24, 2013

Habits are acquired behaviors that tend to occur once established without thinking about them each time.

It's easy to think of nail-biting as a "bad habit" and drug addiction has been called a "habit." 

We have many cultural habits that ease our way in our own world, but may look strange to a visitor.

Hand shaking or air kissing are examples of those. People in Europe usually shake hands when greeting friends, acquaintances or even strangers or kiss each other on both cheeks. In Switzerland they air kiss three times! Not so much here.

Fingernail biting or hair twisting are individual habits that may annoy an onlooker but do not have another effect. Greeting habits, such as hugging each other, kissing and saying "I love you" at the end of a conversation often are so expected we think nothing of them, except when the greeting is missing.

When a habit we expect to receive--without thinking about it-- is missing it is experienced as a loss whether it is a phone call from a distant relative, a peck on the cheek from a departing loved one or even if the screen door doesn't slam as the teenager departs.

We immediately wonder what has changed and why. We put intentionality into the missing behavior and we grieve.

It's not usually the end of a life grief, but it hurts. My first mother-in-law used to say that a broken pinky hurts as much as a broken thigh bone. Luckily I don't know if that is true, but she often felt slighted by some behavior of her only son that she expected was a habit, which she felt he omitted when he married.

What can we do to replace the feelings of loss? How to get on with life after a series of small and large losses?

Some of us read--or watch films or television shows-- which portray others who have experienced losses and resolve them successfully by the end of the program.Some of us look for other people to add to our lives who will provide the missing connections. Some of go out of our way to support others who are grieving because we understand how they feel and some of us replace the missing habits with others such as overeating, oversleeping, alcohol consumption or medication dependency  to soothe the pain of loss. What works for you?

"I'm Lost-Nobody Knows Me" August 20, 2013

There are moments in each of our lives, when we awake in unfamiliar surroundings or when we return from a long international flight for example that we momentarily do not know where we are. It takes a little bit of time to reorient ourselves to time, place and person.
My friend recently returned from a direct flight, with a  short stop in Houston, from Moscow to Phoenix. She reported having this experience not on the first morning back, but on the next, not even recognizing the sleep apnea-machine breathing of her husband lying next to her.

Imagine experiencing that disorientation every day, not only in the morning, but whenever you close your eyes for a short nap. You awaken with the awareness that you are alive and often with the recognition that you have a full bladder. On automatic pilot, you occasionally find your way to the bathroom. Sometimes, you re-enter your room and know where you are or you walk to the doorway and wander into the main room where there are others who greet you and call you by name . Other times, you continue to lie in bed until someone comes to help you begin the day.

You find yourself waking up seated in a recliner in front of the group television set. You watch the moving pictures. Someone comes to escort you to the lunch table and you say, "It's hard to follow," all of a sudden for a moment, you are aware that you have lost a skill.

And sometimes, during a visit from your spouse you have another lucid moment when you recognize how totally alone and lost you feel and for the moment are fully capable of expressing that feeling.

You are walking hand-in-hand with your spouse in front of the kitchen counter where you spend most of your day watching and interacting with the staff, you stop and say "I'm lost-nobody knows me."

This is the world of dementia.

Everybody Loves Raymond August 18, 2013

I know, that's the name of a funny television sit-com now in infinite reruns.

And that's the point.

Every time I enter the memory care unit where my husband resides, I get staff comments on how much they love my husband.

I get anecdotes from the cleaning staff how he "helps" them by watching them clean and sometimes by picking up a piece of lint to give to them to throw away.

I get anecdotes from the staff how he approaches the young pretty blond ones with his arms open, ready for a hug and how politely he says "thank you" when he gets hugged or when a staff member gets him a glass of milk and a cookie.

"He's so cute," they say. "He tells me he's a chemist," they add.

He gets wonderful care from all of the staff members. They know he does not like to sit at the table to wait for his meal to be served to him, so they hand him his plate with one hand while escorting him to his seat at the table with the other arm around his shoulders.

The staff also knows that I arrive every day and they are taught to say something positive to the relatives when they visit.

And of course I can pass these little tidbits on to those who out of the kindness of their hearts inquire as to my husband's well-being.

It is so sad to hear these comments, to see how his life has shrunk, how little he is able to do.

He tried to watch television the other morning, it was a rerun of Bonanza. "It's hard for me to follow," he said when I entered the room. A staff member walked by. "I'm thirsty," he told her, "Would you like a glass of milk?" she inquired.

"Yes," he said and got up to follow her.

"You stay right there," he said to me as he walked off. When his milk was placed on the table, he sat down and completely forgot that I was there.