Anniversaries February 15, 2014

This week marks the beginning of the fourth year that my husband resides in a facility for Alzheimer's disease sufferers.

Why sufferers? Is he suffering? or are we, the folks who love him and remember him as the bright, curious, active scientist, husband, father, grandfather, brother and friend  that he was.

Why did I use the past tense when he is still very much with us? I see him, I hug him, I scratch his back which he actually SAYS he likes, but this bent-over, weak, mumbling, cute fellow who walks around following the staff is so different from the sparkling blue-eyed fun-loving, often serious, but joking man that, when I visit, I enjoy knowing he is being well cared for and I am grateful that his looks and personality encourage good care from the staff, but I remember him in the past tense.

Three years ago this week,my husband was hospitalized in a small psychiatric hospital geared to treat elderly patients for a short while, mainly to validate or change a diagnosis and to medicate the person appropriately so he/she can live in a less restricted setting. I thought then, that he was coming home as when we were finally permitted to visit, his behavior was appropriate, his mood calm and he was happy to see me; I was not longer the enemy poisoning his food, wasting his money or needing to be accosted with a knife.

But these professionals know their clientele; once we found my husband a spot in an assisted living home, he asked my son to hold a staff member down so he could kick her in the a**! The outbursts and rage reactions were still present, but no longer directed at me. He was safe and so was I.

A year later, my husband's needs for assistance with skills of daily living exceeded the capacity of the assisted livning facility and we moved him across the street to a memory care unit where he has resided for the past two years. He is no longer angry or anxious; when asked if he is happy, he decides depending on his basic needs for food, warm clothing or cleanliness being met. 

Alzheimer's disease has stolen so much from this man and from his family and friends. Let's all work together to pressure the government, raise money to fund research to find a cure or a prevention for future generations and to support the caregivers who travel  on this unpredictable journey for such a long time.

Love and Dementia in the Month of Valentines February 3, 2014

Daniel Jones, the editor of the column in the NY Times Sunday Styles section that I read first every week has written a book "Love Illuminated: Exploring Life's Most Mystifying Subject (with the help of 50,000 strangers.)"

He speaks of the young who are always seeking love and the long-time married who are concerned with getting the love back into their relationships. He talks about the three groups of married people who try to get back the passion, excitement and attention they experienced as new lovers and concludes that some seek satisfaction outside marriage, some "quash" their feelings and are "appreciatively resigned" to accepting life, marriage and their families as they are, counting their blessings every morning and some who work very hard to restore the old flame only for all to discover that "good enough" is great!

He cites Ayelet Waldman, Michael Chabon's wife and an excellent writer on her own, who asserts publicly that she puts her relationship with her husband above that of her children and that the couple has maintained the excitement, attention and passion of their long relationship. She was met with jeers and hostility when she spoke on an "Oprah" show!!

So what happens to love when we have great, good, or even good-enough marriages and one spouse develops dementia, Alzheimer's disease,  fromto-temporal dementia or Parkinson's dementia???

The healthy spouse first genuinely cares for the less able partner, providing all the love the couple once shared and sort-of turning that love into the kind of caring they formerly provided for young children, which can be fulfilling for a while. The caregiving spouse PAYS attention, unfortunately gets Excitement from behavioral changes that occur with the afflicted spouse and is Passionate about all medications, supplements, health articles-- anything that will keep the relationship as well as the partner--alive longer.

My friend who has recently become a widow explains that she surprised herself by falling in love with the dependent, sweet man, so different from her spouse of 50 years she visited in the memory care center. Truly, her husband was the darling of the center--loved by everyone. 

Now my husband and one female resident share that spotlight. No one here knew either of them when they were vibrant, healthy intelligent communicators. They are loved, cared for gently and compassionately, but for their families it is definitely not good enough.

Goodbye to Wally January 27, 2014

We are about to lose a sweet, loving Teddy-bear of a man who attended our Alzheimer Caregiver Support Group with his adored wife Carol. Since they had always done things together, he wanted to join her at the group meetings as well. He ate the snacks, sat by the door so he could visit the facilities whenever he felt the need and looked adoringly at his wife the rest of the time, asking questions occasionally when she spoke, wondering if she were talking about him. Until about three months ago when he forgot who she was, initially calling her his "cousin."

Since she was the axis about which his world revolved, when he lost her, Wally lost himself and he became unmanageable at home. It took 90 interminable days for the Arizona Long Term Health Care process to approve him for residential care and he was placed on a waiting list at the memory cere center, but just when the paperwork was complete, Wally became aggressive and violent and was admitted to the closed psychiatric ward of a local hospital where he has been for the past two weeks. Last week he stopped eating and drinking, his kidneys failed and he was moved to a hospice unit today with a two to three day prognosis. He breathed his last breath this afternoon with his beloved wife at his bedside.

Alzheimer's disease is More than Memory Loss January 23, 2014

Earlier this week a Southwest Airlines plane landed at the wrong airport in Missouri.John Benson posted this article in VOXXI which is so important I am reprinting it here.

"In terms of uh-ohs, we’ve all been there. However, this is probably one of the more high-profile “oops” events in recent time. It turns out the pilots simply confused runways from 10,000 feet in the air. Still, this got VOXXI thinking about a more serious affair – Alzheimer’s disease.

When is a faux pas simply, well, a faux pas? And when is a lapse in memory a sign of something more? VOXXI talked to Cleveland Clinic Lou Ruvo Center for Brain Health Director Dr. Jim Leverenz about the distinction.

“Unfortunately by the age of 35, we start to see what we will call a normal age-related decline in retrieval of information,” Leverenz said. “I think most of us have that experience of having trouble coming up with a word or seeing somebody on the street we’ve known for years and trying to pull that name up.”

When having such a senior moment, Leverenz said there are two different components involved. If it’s a retrieval of information issue that results in the person remembering later, that’s not something he worries about. In fact, he suggests a patient worried about their memory loss is basically a good thing. In a nutshell, as a person ages they have more information stored and thus it may take longer to access the word or name for which they’re searching.

It’s the other component that is troublesome and could be an issue to something larger.

“What I worry more about is if somebody comes in and says, ‘I don’t know why I’m here, my wife brought me here,’” Leverenz said. “Then the wife says, ‘He’s having memory issues.’ So that loss of insight often implies a more serious condition.”

One issue with Alzheimer’s disease is patients maintaining new memories. This is why early stages of the condition may be hard to recognize because they’re able to remember older memories, thus no red flags.

“When I’m listening to a history from a patient and their family, I want to hear again that they’re struggling with putting new information in,” Leverenz said. “They do lose their keys but we all do that. One of those nuances is the patient will say somebody must have moved them. Whereas when I lose my keys, I didn’t put them in the right place. So I have that insight that this is my problem."

Goodbye to Gil January 17, 2014

I did not know Gil when he was a medal-winning Captain in the US Army with many soldiers under his command. I did not know him as a father to Glenn and Jaime. I met him only in recent years when he was a day club member at Arbor Rose. He greeted everyone with a smile and when asked how he was doing,he always answered "I'm here." 

I knew him as he entered Building 5 as a well-liked resident who loved to eat and to drink Coca-Cola, his own or his neighbor's and when he transferred to the memory care unit where my husband resides.

I knew him as a gentle giant who towered above us as he walked and walked and walked the path around the unit outside and inside, visiting as many rooms as he could and enjoying whatever snacks or caps he acquired along the way. Gil loved wearing caps; he was the star of building 7, beloved of staff and of the female residents who loved to walk with him, and fought with each other to hold his hand and sit by his side on the leather love-seat or next to him at the dining table. They saw what a handsome man he was and how kind and accepting of their admiration. As Gil stopped walking and attracting attention, the unit has become a much quieter, less vibrant space, but even in the last final weeks and months, he would look directly at each one of us who greeted him and his bright eyes would still say "I'm here."

We spouses become attached to the residents and to their caregivers who we meet each day when we visit our own spouses or parent; we exchange information or tidbits of quirky behavior, of positive and negative developments in the lives of our loved ones, staff changes and the small issues that arise. We support each other and look after other spouses as well as our own, especially if someone is absent for an illness or a vacation. We visitors help out if there is a crisis on the unit, setting the table for dinner or handing the plates of food to the residents. 

It was difficult for me as I drove to the unit today. I knew I would not see Gil's wife Sue's white car as I scanned the parking lot. I knew the door to his room would remain shut for a week to let the staff mourn and adjust before assigning another resident. I empathize with the pain of loss his family is experiencing now and I don't know when that process will begin for us.

Grief and Loss in Alzheimer's Disease January 5, 2014

After spending holiday times with older relatives they see seldom, family members sometimes comment on the difference in their relatives, personality changes, behavior changes usually involving a loss of inhibition. Adult children are often somewhat upset and do not know the cause of the change in their older relatives--whether their mother is visiting the casinos frequently losing money or their father is making unecessary body noises in public or telling risque jokes he never would have before.

Quite often they put the blame on the second marriage spouse--they fear the influence of the newer person in their parent's life has changed their parent in some detrimental way.

The spouses and the adult children who live nearby are unaware or in denial of the changes which happen slowly; the changes are so much more apparent to folks who don't see each other often.

The diagnosis often comes two to three years later.DEMENTIA or MODERATE ALZHEIMER'S DISEASE. By this time the caring partner is already feeling the loss of a partner and has taken over the running of the couple's life--or the nearby adult child has.

When the healthy spouse or the nearby adult child  then inform the out of town relatives, their perceptions of their parent's partner don't change, but they, too, feel the loss of their one remaining parent very deeply and react with  one of two basic fear responses- fight or flight.The most basic response to fear is either to fight the idea-"Let's get another opinion." "Its your fault. You made my parent sick."  or flee "My parent is no longer there for me, I might as well forget about him/her."

It is so hard to realize we can no longer ask the person diagnosed with dementia or Alzheimer's disease for advice, we cannot share with him/her our memories of childhood or a good meal we shared at New Year's Eve in the past.

My spouse and I had annual season tickets to the NY Philharmonic Orchestra. This week PBS broadcasted a Live from LIncoln Center performance of the orchestra's opening gala last September. I saw that the musicians did not wear only black as they did when we attended; the women wore colorful gowns, some of the men wore colorful bow ties with their tuxes! How I wish I could share that fun information with my husband. The feelings of loss are constant, large or small daily reminders of the good life we had which is now so limited. 

We grieve, we mourn the losses, but we still can smile and know we are doing our best to see that he is well cared for, he recognizes us and looks forward to visits most days-when he is not napping or visiting in someone else's room.

New Year Resolutions Time January 1, 2014

Most everyone I know sets herself a goal of less food and more exercise "eat healthy" every January which gets abandoned by March if not sooner. With all good intentions, just deciding to do something, doesn't succeed in changing lifelong behaviors for a lifetime. Behavior modification is a process that is based mostly on reward and punishment. We do what gets rewarded and we shy away from what doesn't and food is a great reward itself. It is so hard but in order to change patterns of behavior that concern food , we need to find rewards that are not food related or, that are taste related. I felt rewarded this morning when I bit into a perfectly prepared omelet and ate  a sweet grapefruit I just picked from my backyard tree.

So a cousin of mine in Portland, Oregon has suggested we choose a different resolution this year. Heidi posted on Facebook that we choose to do Random Acts of Kindness each day throughout the year.

Say or do something kind for someone each day. In college we called these acts of anonymous kindness sharing "warm fuzzies" and refraining from giving anyone "cold pricklies." which were acidic comments, exclusion and inattention. I know it sounds tacky from the olden days 55 years ago from my graduation!!

The smiles I get and the pleasure the residents of the memory care unit receive when I simply say hello to them, when I fix a blanket or bring a magazine for one of them to peruse warm my heart. 

There are those of us to whom it comes easily, to recognize something in the person to whom they speak that they can admire--and they comment on it almost automatically, but genunely. Compliments feel as warm as hugs when they are generously bestowed. For most of the rest of us, this awareness of the other person gets lost. We concentrate on the business at hand-at the market, at the post office, even scheduling a lunch date. We have so much to say, we forget not only to listen, but to gauge how our comments are effecting the listener. 

Be kind, be aware, be less in a hurry. Each time another year passes we get a glimpse that life is short.