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Monday, April 29, 2013

Home April 29, 2013

Where is "home?" Where I was born, where my parents bought a house, where I lived while raising my kids, where I live now? Is home where you are loved,as in "where the heart is" or random as in "anywhere I hang my hat?" I know the concept changes. Tonight we took my husband out to a restaurant to eat, as per his specific request. He ate none of his favorite food, claiming not to know what it was. He wanted to go home and when he got there, he happily ate a half of an egg salad sandwich.

While it is definitely true that my husband of all men loves being surrounded by lovely young blond women, his level of comfort in his memory care unit is a huge comfort to me. The evening staff has been increased by students who help with the meal service, getting folks to the table and plating and serving the meals. Three young women and one young man are indeed blond and cheerful, thoroughly enjoying their interaction with the residents.

Bob loves the adults on staff as well, smiling when he sees them, especially when he recognized the familiar faces when we returned from our dinner trip fiasco. The important lesson I learned once again?

When our Alzheimer's diseased loved ones want to "go home" or "get out of here" they are responding with word cliches that indicate their momentary connection to the outside world --either from the past or the present. It is not only not necessary to follow their request, it is often not in their best interest to do so. Just as when raising children, we, as parents, cannot accede to unsafe requests the child makes, we also must use our own judgment with our loved ones with dementia. We must make all of the decisions based on their level of cognitive and physical functioning. My mistake that I make over and over again? I react to my husband's remarks because I begin to feel sorry for him and for myself and I yearn for the same bit of normalcy he does. I imagine we can still have those few lucid moments. The only ones we can have now will take place on the unit where he is safe and he feels secure.

Thursday, April 25, 2013

The Hardest Thing about Caregiving this Week April 25, 2013

Many caregivers respond to this question with incidents of behavior, repeated questions by their loved one that drive them bonkers, unwillingness of the loved one to eat, bathe, dress appropriately or get ready to leave the house on time.

These are valid group discussion points and the members of the group help each other with solutions and by sharing their own frustrations, gather enough patience to continue for another week or two.

Once a loved one is living in a residential setting, the hard part of caregiving changes. We are concerned about the care our spouse or parent receives, whether they are eating enough and how long they continue to recognize us. Glenn Campbell's daughter was in Washington, DC speaking to Congress about funding for Alzheimer's disease and she teared up when mentioning that her Dad sometimes doesn't know who she is.He no longer can sing or play the guitar or appreciate her shared memories with him.

For me the hardest part of this week has been my husband's increased passivity. He is losing interest in complaining, in wanting to leave the building. He merely sits and waits for his meals. Seeing my sadness, my son found a sponge volleyball and began to throw it to my husband. He caught it, focussed, threw it to me and the three of us played with that ball for a long time until dinner was served. My husband still has good eye-hand coordination, good eyesight; he was playful, faking a throw to one and throwing the ball to the other.

My husband seems content with his life, satisfied with the young workers who dote on him. I miss each skill he loses, even those I felt embarrassed about before.

Sunday, April 21, 2013

A New Journey Into a Distant Past April 21, 2013

In one month I begin to follow my grandparents' footprints from the time they were deported from Frankfurt, Germany to their homeland in Poland and it is three in the morning as I compose these 100 words in my head. My itinerary is set, hotels and airfare purchased; will I be unable to sleep through the night until I leave? Anticipatory anxiety is an ordinary response to the unknown; excitement a usual response to expected pleasures. I am looking forward to understanding and reporting on my grandparents' extraordinary resilience and strength in adversity; I fear being overwhelmed by my discoveries.

Speaking with my cousin Daniella last week, I was reminded of the many ways we carry the lessons of our parents intended as well as unintended throughout our lives.I was relating how I felt my mother was accompanying me as I visited the cemetery where my family lies peacefully beneath the stone my grandparents purchased during their lifetime. I don't 'miss' my mother although she died in 2000 because she is so much a part of me. My mother is my conscience the way I for many years served as her memory-holder.

It is my mother who is sending me on this journey of discovery of my grandparents' amazing survival, the same way she actually sent me to Germany in 1955 to "be (her) eyes and ears" to witness what had befallen her beloved city from which she was exiled as a Jew.

It is my mother who carried the traditions forward, who visited everyone who was sick, who baked cookies and mailed them to wherever her eight grandchildren went to school, who was the peacemaker and her generation's connector.

It is now my job to keep the connections, to ensure that the story survives for another generation at least in the form of a book that will sit on the shelves of all the cousins, nieces, nephews and grandchildren and bear witness to Holocaust Remembrance and to our survival as a people.

Wednesday, April 17, 2013

Figures of Fantasy April 17, 2013

We are told that the definition of sanity is the ability to tell the difference between reality and fantasy. The crazy people out there who commit violent acts against innocent people truly believe their view of reality and if they are ever caught alive, feel no remorse and do not repent as they have decided in advance that their beliefs and fears are real.

Be that as it may; one is not permitted to act on those beliefs and murder people.

When it comes to deciding sanity in the dementia population our job is to keep the people safe and unable to harm themselves or others. Most of the residents in my husband's memory care facility are in that group who live most of the time within their own delusions-their own decisions about what is real and what is fantasy. Their knowledge of personal property and personal space is lost; their sense of control remains although they have only a very limited sphere of control over their everyday lives.

Not only are we unable to keep them sane, I am  sure it is their personal interest not to do so.

What do I mean?

When he  is rational, my husband states, "I don't know what to do," and he sits staring into space until he feels hungry, tired or has to use the bathroom. When he is animated, I find now that he is fantasizing about pieces of old concerns, record-keeping, passes, statements, banks and women. Much of his rambling is not understandable, only isolated words get produced in full, but he is content, full of dignity and purpose, rambling aloud in a soft spoken tone, probably to anyone who will listen, what is going on in his head, which has nothing to do with the reality of the moment. This time we were sitting on a bench feeding the ducks at the lake.

He is living his time in the US Army when he was stationed in Japan. My guess is that his army experience was such a different reality from his normal academic  life that this dementia, caused by Alzheimer's disease reminds him of that other time of his life where he was able to make the best of a bad situation by getting promoted to company clerk and not having to spend time preparing for combat of any kind. Sadly, he is pretending he has those skills, that he is making those decisions, that he is living that life now. Good for him!!!

Thursday, April 11, 2013

Doors Close---and Open April 11, 2013

There is an old saying which intends to maintain hope in the midst of despair.

Ponder this newest outcome in my husband's Alzheimer disease life with me.

When I returned last summer from a vacation, the hospice worker called me in for a conference stating my husband was "failing." I rushed to make funeral arrangements, to get my paperwork in order, expecting the worst. I did not leave town for the following nine months, but of course nothing bad happened. My husband's speech has declined, his cognitive skills are decreased even more than they were before, but he is physically well.

So well, in fact, that hospice called me in for a conference as soon as I returned this time to inform me they were removing my husband from their care!

That is the door that is closing. The memory care facility will absorb the services that were performed by the hospice workers and my husband will probably be happy with less blood pressure monitoring.

The door that is opening is an introduction to a team of physicians who do only house calls and residential facility visits, who will provide the oversight of my husband's medication, arrive on site for monthly visits and be available on call for emergencies, removing any possibility of hospital visits for any reason. This will greatly reduce the amount of dollars being charged to Medicare and may be a cost saving concept for other end-of-life patients whose physical health is stable.

Monday, April 8, 2013

Forgiveness Monday, April 8, 2013

Today is Holocaust Remembrance Day. We light memorial candles for the more than six million murdered victims of Nazi Germany, the Jews, homosexuals, Roma(called also gypsies) physically or mentally  disabled Germans and any others whom the Nazi regime felt were "against" them. Yesterday I attended a memorial service in their memory, my grandfather's and my uncles' and aunts' and cousins' memory included.

There was more the German people could have done to stop the genocide; there was more the world's leaders could have done to save lives by increasing immigration or by bombing the train tracks which lead to Auschwitz.
Yesterday, I read the review of the latest biography of President Roosevelt, FDR and the Jews by Richard Breitman and Alan Lichtman. He didn't do as much as he could have. Neither have modern presidents done well with genocides all over the world.

It is proving very difficult to get people to cooperate who have different views of the world whether these views are religious, political, territorial, ethnic or social, whether these issues are being discussed at our Congress, at the United Nations or around current events groups.

My focus lately has been on caregivers for people who have life-limiting dementias, my husband of course included. Having the benefit of a bit of respite these past weeks has helped me see how isolated my life was when my day was consumed with worry about my spouse. When any of us are so consumed by life within our homes, whether by economic pressures or illness, we have no strength to concern ourselves with the larger world, of our neighborhoods, schools, towns, state or country. We let ourselves become complacent, permitting the elected officials to act in what we hoep is our behalf, representing our views and concerns ojn the higher, broader level.

But what when they don't? When their own or corporate monetary gain is placed before safety and compassion? Let's awaken and fight for monetary allocation to fight Alzheimer's disease and not to add financial burdens to seniors by reducing Social Security.  Caregivers' daily lives depend on that money. Let's gather strength from each other and not lose sight of the larger picture.

Thursday, April 4, 2013

ReEntry April 3, 2013

Just twenty-four hours ago I completed my "one more walk" around the Central Park reservoir. Dressed in my travel khakis I threw on my down jacket to stop at the bank for cash when I decided to walk. My hands and ears were freezing as I had not brought gloves, but the sun was shining, the wind brisk and the folks walking and running were enthusiastic. Today I walked in the sixty-degree early morning sunshine in Mesa, Arizona, wearing my black calf-length workout pants and a short-sleeved shirt. The people I encountered wore shorts and tank-tops. Amazing.

Re-entry is wonderful and difficult at the same time. There is so much mail to sort and so many weeds have grown in the yard. My family was delighted to see me; we ate dinner together as I shared my stories.

After the usual unpacking it was time to visit my husband at the memory care facility. When I entered one of the careworkers embraced me, "We missed you," she said, and then, pointing to Bob who was seated on a chair outside his room, she added,"I think he did, too."

I walked up to him, bent down and asked, "Are you sleeping?"
He opened his eyes and said, "No."

He looked a bit disorganized as if I really had awakened him from a deep sleep. He asked a worker at the kitchen counter for a glass of milk, held my hand, knew exactly who I was, but had no idea I had been away. He is content and well cared for. I am relieved.