Setting Goals December 30, 2014

When folks start talking about new year's resolutions, in my head I go "Been there, done that" my life is just the same, year in and year out. What goals do I need to set?

But last night my grandson told me a story that merits a bit of mindfulness--I asked after his other grandparents who are a few years older than I. "They just came back from Hawaii where they have a time share," he reported.

"Great," I answered, "they have a whole group of friends thay bought the time share with many years ago."

"But they went alone this time bcause all of thier friends have died." 

He said it so matter-of-factly. I was surprised. "Isn't that upsetting to you?" I asked.

"You know Grandma, they all smoked and drank and so they got sick and died. My Nana and Pop_Pop don't do those things. They eat right, Pop-Pop doesn't hear very well, but otherwise they're fine. They miss their friends, though."

So I realize it is good to take stock of myself at the end of the year, be mindful of what I do, proud of my accomplishments in order to be able to look forward to a year of the same--

Another year like this

one will suit me just fine.

Learning to Dance in the Rain December 20, 2014

As the darkest day of the year approaches, as the cold increases even here in sunny Arizona, I find it tempting to curl up with a good book and wait for the storm to pass. 

Emotionally as we caregivers to loved ones who have Alzheimer's disease or other progressive, debilitating diseases watch our husbands, wives or parents decline, we, too, seem to be waiting for the storm to pass. We imagine what our lives will be like once this caregiving is finished, while, at the same time we dread the loss of the loved one we cherish.

I have been waiting for the storm to pass for several years now, ever since my husband's personality changed and he became angry and aggressive and has to live away from the lovely, handicap accessible home we built for him to live out his final years.

What keeps you from moving forward in life? What storm are you waiting to see pass before you move on?

As I see each skill my husband loses, I mourn and I wait. What will he forget next? Will his moments of lucidity return? Will he recognize me when I visit today as he did yesterday? Or will he turn from me and follow a caregiver into another room and sit contentedly among the other television viewers on the couch?

But now I also see that my husband is lovingly cared for in a small intimate environment and that his life is more stable. I also am beginning to see that life is not in waiting for the storm to pass but in learning to dance in the rain.

In the Alzheimer's Association Caregiver Support group I facilitate with my son Steve by my side, we have a cadre of eight members who have attended the group for more than two years. Others come and go as they feel the need, Slowly during this time, bonds have formed between individual members of this group and certainly the comraderie we find in supporting each other has become very important to all of us. We look forward to our twice monthly meetings and this time we did something different.

A man attended our group for a while whose wife has Alzheimer's disease. We suggested avenues of assistance for him; we distributed pamphlets, we shared our experiences. He brought the menus for his pizza parlor and invited us to visit his establishment, two miles from our meeting place. 

Yesterday, seven of us went, after our meeting, for pizza and other delicious Italian foods. He was there, as was his wife, whom he cannot leave alone at home. Although he is waiting for approval from the state to place his wife in a residential facility, we are learning to walk together, in rain or shine.

Luxury December 15,2014

What is luxury to you? Has the idea of luxury remained constant in your life? Do you still yearn for, or highly value, the things you have acquired over the years?

Do you take for granted what you thought of as a luxury in your childhood or young adulthood?

As a child, I thought luxury would be having my own room, a lovely white-gowned wedding, my own apartment   with my handsome husband, little children running around happily, peace in the world. I took for granted my college education, my ability to live in the dorm away from home, the diversity of people whom I was privileged to meet and to interact with. Luxury in college was a hot plate to prepare my own coffee, a kosher salami hanging from the fire escape sent to me by my grandfather, and most of all my English racer bicycle with a college license plate.

I took for granted the house in the suburbs, I was happy with my hand-me-down car when my husband bought himself a new one and luxury for me became time alone- to read, to think, to sit in the sun at the beach. Not that I didn't also shop for and love my designer handbag, my soft leather gloves and my cashmere sweater. From wishing for peace in the world, I became active in PTA, taught first graders, joined the Women's Political movement, luxury forgotten in the middle of life, rearing teenagers and continuing my education.

Luxury in my 50's became travel to exotic destiinations about which I had studied or read, guarded jealously by saving up my vacation time. My children were grown and on their own, I met my second husband and we enjoyed the freedom to live our lives the way we chose to do so.

Now that all of those goals have been attempted, achieved or discarded, I luxuriate in a sinfully soft bath towel after a shower in my bathroom when it is filled with sunlight. I luxuriate in the beauty of a sunrise as I walk early in the morning, or of a multi-hued sunset as I sip a glass of Prosecco--alone-- on my lovely patio. I observe the crowds pushing and shoving to purchase gifts for the holidays and I rejoice that I am now beyond that. I will devote my energies to working toward helping caregivers of Alzheimer diseased loved ones, to meeting new people who are on my wavelength and to enjoying my children and my grandchildren.

Play Ball! December 12, 2014

It is generally understood that new learning is not part of the dementia spectrm; studies are focussed on retaining memory, not new learning.

It is also commonly understood that people revert to old forms of behaving when they develop dementia.

Actually, we don't know enough about dementia yet to really state anything like that.

My husband's actions and behavior surprise us every day. He still has humor, he still wants things done on his timetable. He certainly still prefers to look at young good-looking women, but his fascination with ball playing is something in which he has not indulged since he was a young boy in Brooklyn playing stick ball in the streets. "The sewers were the bases," he recalled a few years ago."And there weren't so many cars parked on the street as there are now," he added then.

We purchased a playground ball this time as the ones from the dollar store don't bounce straight somehow. My husband will play with anyone; he will throw and catch but he prefers to bounce and catch the ball, sometimes standing and sometimes seated in a chair. But the other day, a few other men joined him in the yard and wanted to play--he would not share his ball.

We try to provide activities that are stimulating, but we never quite know what will work and what increases his agitiation. He is also confused about the decorations in the home for the holidays. He wants to take some of them to his room to put them away. Putting small decorative objects away where they will be safe is something I remember of my spouse. Not being willing to share is new since he developed Alzheimer's disease. I believe that he feels he has lost so much that whatever he does remember, he clings to.

Please be patient with the loved one you care for during this hectic time. Remember to modify the holiday to fit the person with dementia's needs. Remember the good times of the past; those are good feelings. Accept the smiles and the moments of recognition of the present. They will be precious memories for us, although sadly not for our loved one with dementia. Life is bittersweet.

In a nutshell, remember this: caregiving is an art not a science. Attempt to take a lesson from the Navajo who believe that to try for perfection is to try to be God. If there isn't already a visible error in a crafted object the crafter will intentionally introduce one. Don't lose sight of the fact that we are human caregivers trying to help human care receivers. We'll never get everything right. That truth holds all year long but is even more important to remember during this time of year when others can appear to live in an ideal world.

Goodbye to the Memory Care Unit December 3, 2014

I return to Ecclesiastes often, especially the part from which the song Turn, Turn, Turn was taken.

"To everything there is a season and a time to every purpose under Heaven."

Cousins Deb and Nate sang and performed the song at our wedding 24 years ago.

This time the purpose was to move my Alzheimer diseased spouse from the safety of his memory care unit to the smaller environment of a group home where he will live among ten people rather than among 22.

This is the third out of home placement for him. The first assisted living facility worked well for a while, while my spouse's self-care skills were still intact. It was hotel resort-like with lovely furniture and several areas for reading or watching television. He was able to enjoy the delicious chef-prepared food and a studio apartment with the privacy he wanted, but which was situated right across from a staff office so he could be monitored for safety. He remained there for a year.

When he needed more hands-on care, my husband moved across the street to a special, brand-new unit which was geared for Alzheimer's and other dementia residents. The staff dressed in red shirts so the residents could identify their helpers. The food was cut for the residents so they could eat indpendently, entertainment was provided in the Day Club where the residents could socialize. All good for the past three years.

But now, my husband no longer recognizes his room, he is distracted by the many people, he wanders around the large space aimlessly and he needs more one to one care than the large unit can provide, so we found a lovely home for him which suits his needs better at this time.

When a loved one needs out of home placement, the caregiver's job is not over. We are continually responsible for the resident's life, to see that his needs are being met well, not merely minimally. Our loved ones deserve the most care and dignity possible and sometimes, that requires a move, even though the change was difficult for me--I was so connected to the staff members, the residents and their families it was hard to say goodbye. Everyone was so loving and caring for us all.

The only constant in life seems to be change--except perhaps from a vending machine!! 

Gratitude at Thanksgiving Time and Always November 25, 2014

So many of us have such mixed feelings at holiday time. We reunite with family, sometimes with those whom we don't see often. We realize the passage of time as they all look older. We don't often see our own aging.

We remember holidays past--the folks who are no longer with us, due to illness or death or divorce,  the specialty regional or ethnic foods we ate that no one knows how to make anymore, the football games we played in the yard or watched at our local high school stadium, the parade we actually attended or watched on television.

Often the holidays now feel diminished, especially when family live far away and cannot all attend or coose not to attend due to family feuds. Even more so, when one of the loved ones has developed dementia and cannot participate any longer, can't help with the preparation, can't travel to visit family members and sometimes don't even remember their own family members' names.

What do we have to be grateful for?  We are grateful for the people in our lives, the new people we have recently met who enrich us and share their stories and recipes with us. We are grateful for what we have that is good and wholesome and bountiful. Of course all that good food is also fattening. People actually eat about 4500 calories in a typical American Thanksgiving dinner, more than double the amount recommended for a whole day!

We are enriched by feeling gratitude for the people we share our lives with, for children and grandchildren, for parents, uncles, aunts and grandparents. We are grateful we are not alone.

I am grateful for the staff of the memory care center where my husband resides. Each year they work on the holiday, decorating the center, preparing and serving the most traditional foods in a way that is possible for the residents and their visitors to enjoy, which is even more important for the residents who do not have family who come to visit. Sharing the day with them increases my gratitude for the blessings that have been given to me. Please share your bounty with someone who has less and smile, visit and reach into your pockets and donate money to your favorite charity to show your gratitude on this holiday.

The Glen Campbell Movie November 17, 2014

I went to see Glen Campbell's new movie which follows the last two years of touring after his public announcement that he had been diagnosed with Alzheimer's disease.

I had several feelings as I watched this film. First it shows the beginnings of the disease and explains how normal the person can seem, especially to ousiders. Next it shows how talented Glen Campbell was, how he could still play the guitar and read the words on the teleprompter on stage while often forgetting the name of his daughter who played the bango right next to him.

The film shows how much he adores his current wife and the difficulties he has in recognizing other members of his family, including his own children (he has eight) and his former wives (he had three others.)

Next the audience becomes aware of how much he loses during these two years, how different he is at the end of the film from who he was at the beginning.

The film shows the progression of this terrible and terrifying disease, how he forgets that he hasn't taken a shower, how he becomes paranoid that someone has stolen his golf clubs, how his facial expressions change, how much older he appears and how his libido increases.

The film shows the dedication of his wife and of some of his children who play music with him and the touring ends when everyone sees he can no longer perform. Yet he has fulfilled his contract completing at the end of 2012 and then putting out another single. It is remarkable to what degree the family, especially his wife extended themselves to keep her husband/father  active and engaged as long as was possible, encouraging, entreating, directing, suggesting, cajoling and privately crying.

After viewing the film, I googled Glen Campbell and discovered that by April, 2014 he had been placed in an Alzheimer's treatment facility, three years after the diagnosis. I also read that several of his family members object to his placement, not the ones who have been so close with him during the progression of the disease, but some of his older children who still don't get it.

How Best to Support Alzheimer's October 27, 2014

November is Alzheimer's Support month. Folks in many communities, mostly the caregivers for Alzheimer's and other dementia sufferers march to raise money for research for a cure. Please join us and donate money to support the cause. The best hope for a cure is financial support for the academic and private research facilities.

Here in Arizona, the weather is perfect for walking or for whatever folks want to do outside. It is butterfly season in my backyard with delicate white butterflies and bold yellow ones fliting among the bright bougainvilla.  Many small flowers dot the low bushes with lilac and yellow blooms lifting the spirits and brightening the day. One of my friends who is a caregiver for an ailing spouse joined me for a walk and revealed that she is feeling so trapped by her infrequent periods of respite from caring.

Let's use this upcoming November to support a caregiver. Visit, phone, offer to sit with a relative or a friend to permit a bit of respite for the continuous presence required of people who are now lacking not only in self-care skills but who rely on their spouses or adult live-in children for their identity.

        

New England Researchers Now Know the Cause of Alzheimer's disease October 20, 2014

BY FREDRICK KUNKLE THE WASHINGTON POST

A group of New England scientists say they have confirmed what Alzheimer’s disease researchers have long theorized but had been unable to prove: The brain-killing illness is caused by the deposit of a protein in the brain, known as beta amyloid, that triggers a devastating series of dementia-causing events.

Scientists at Massachusetts General Hospital also identified an enzyme that plays a key role in the progression of the disease – thereby offering a target for pharmaceutical-makers to develop a drug that would halt the neurodegenerative disease.

Their results were published online Sunday in the journal Nature.

The team arrived at their conclusion using an innovative laboratory culture they dubbed “Alzheimer’s-in-a-dish.” Instead of cultivating single-layer cultures of test cells in two-dimensional liquid-based systems, the team grew multiple-layered cultures of neural stem cells in gelatin-like, three-dimensional models that more closely resemble the brain.

The scientists used the 3D cultures to answer a simple question: Does beta amyloid actually cause Alzheimer’s disease?

For some time since Bavarian doctor Alois Alzheimer first identified the condition that bears his name, scientists have known that the distinguishing features of Alzheimer’s disease were the presence of two protein variants: amyloid beta, which forms insoluble plaques, and tau, which creates neurofibrillary tangles.

Scientists have also known that both must be present for the symptoms of Alzheimer’s to appear – cognitive impairment, loss of memory and inability to perform certain motor activities.

How Do You Get Yourself Up from the Doldrums? October 10, 2014

When I am feeling low, I usually pretend that everything is fine and I push myself to accomplish my daily living tasks and goals. I go on "automatic pilot" as it were to get me through my day. I save myself from feeling terrible by not feeling much at all. Sometimes that works. I call it "acting as if all is right."

When I begin to recognize that I am not caring what I prepare to eat, merely grazing from the refrigerator or from the pantry shelf, that I am choosing the same shirt and pants to wear without caring to coordinate an "outfit," that the "to do" pile of mail is piling up because I really don't feel like doing anything, I just stop.

I find a book to read, I ignore my friends, I sort of go into hibernation-wallowing in my doldrums.

Sometimes I am "rescued" from myself by someone who needs me and by helping another I feel better.

This time I lifted myself up through "creature comforts." The store with the twenty per cent coupons had a sale on really soft bath towels--so I bought one. My son exchanged my regular shower head in my shower with a new one that sends the water cascading directly down, rather than at an angle that was too high for me to really enjoy-and I bought new sheets for my bed! 

We all feel sad or depressed or stuck in a routine sometimes and we need to fiind some small pleasures to perk us up. What are yours?

Organization Strengthens Your Mind September 30, 2014

This column is from an advertisement for a memory enhancing supplement I received. I feel it is so worthwhile I am passing it along to you. Everyone can benefit from becoming better organized.        When a loved one starts to experience cognitive decline, every task required to get through the day becomes increasingly difficult. With these difficulties, comes frustration, anger, sadness and a number of other emotions. By understanding the feelings associated with the loss of certain levels of control over one’s self and environment, it is easier to make the changes necessary to get through the day.    Adding some structure can make a BIG difference!  Organizing the day, week, or month will help those with memory impairment to be and feel successful. The first step is identifying the best way to begin putting things in order. As you plan consider that there have been a number of studies on “right brain” versus “left brain” and how dominance of one side over the other determines how people see things visually, and therefore, how they would organize to meet their personal preferences.   Beth Randall, owner of JOE ORGANIZER, and a professional organizer, provides some great examples. She states that “right-brain thinkers are more visually oriented…they want to see their things, and have them in sight. They tend to be more creative and think in images.” Whereas “left-brain thinkers are more logical and analytical, they like lists and planning in advance.” When she helps organize, she looks at these tendencies, and creates her plan. Her one basic rule, important for anyone looking to improve their lives through organization, is to, “have a place and a process for everything in your home…get into the habit of putting things back where you have defined that they go right when you are through with them, or right when you walk in the door…Have a place for everything.”   When it comes to structure and the aging or declining brain, it is also important to de-clutter and stay organized. As there are no methods to completely prevent cognitive decline, however, putting strategies in place and “training your brain” to do them daily will both make the day easier, and keep the brain active. Many caregivers understand that any effort to organize the world around the ones they care for will help. Getting them involved in the changes as much as possible will help too! They should have a say in planning their day whenever they can. Have them sit with you as you write out their daily or weekly schedule on a white board or calendar that they can see easily. Make sure appointments, transportation details, and contact information is clearly visible.   In addition to planning their time, it is a great idea to make some decorating changes. Keep in mind the way they like things, keeping important items easy to reach and find, as Beth Randall suggests. Have your loved one play a role, challenge their brains by making decisions on how colors go together, how photos can be arranged on the wall, and even how furniture might be moved to provide more space for easier navigation.     To further improve cognitive functioning for yourself or someone else you know who is showing signs of memory loss, visit www.ThinkPerceptiv.com! Sevo Nutraceuticals, Inc. |  800 Main Street, Holden, MA  01520 |  (508) 829-8046  |  www.thinkperceptiv.com

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Love an Elder Day-- September 22, 2014

What an idea!

Who is an elder? Does she have to look frail to be considered one?

Is there an age limit?

How do we show love for an elder?

My idea? An  elder is someone older than I am , someone  whom I respect and admire, someone perhaps whom I take for granted that she will always be here and perhaps do not show her or tell her how much she means to me.

October first, as the poster says would be that day. Join me please in showing love to an elder on October first--and any day--we never know how long we have to show someone we care. 

Geese Follow - Do I? September 14, 2014

I met a woman this week who had herself tested for the possibility she would develop Alzheimer's disease.

She has many relatives on both sides of her family who died of Alzheimer's disease and she was curious to know what her chances were of developing this dreadful disease. She is in her late 50's or early 60's. I didn't ask her age.

Of course her expereince made me think. Do I want to get tested? Do I want to know? How would my life be different if I knew?

Could knowing I had a larger than average chance of developing Alzheimer's disease help me in any way?

Could it help you?

Looking Back September 4, 2014

Looking back with regret for the road not taken, looking back with anger at relationships from the past, looking back at all --we are advised is not good for us. We are to look forward, abandon the idea of what we thought our life would be, accept the reality of life as it is and move forward. 

Satchel Paige said, "Don't look back. Whoever is behind you may be catching up with you."--another reason for not looking back.

When you love a person who has Alzheimer's disease, it is difficult not to look back fondly remembering the times you once shared and regretting the present loss of companionship. Each diminishes the present and I try not to remain there too long.

Last evening I sat by the water reading my book and watching the sun set; it was warm, pleasant and lovely. After the sun was no longer visible on the horizon, the  sky began to darken and my thoughts turned toward dinner as I meandered my way back home--which was north.

As I walked I noticed folks with cameras outstretched facing behind me. Curious, I turned, looked back and beheld a sky colored with huge swirls of pink and purple. Sometimes it pays not to be so intent on the next event, idea, thought and purpose and to take the time to look back. The beauty you may behold is worth the delay.

Return Are All your Ducks in a Row? September 2, 2014

We think of returning in September. We return from vacation, we return to school, we turn ourselves toward the new season and to our pursuits with more energy, more optimism, fresh from the summer doldrums. Are you ready?

Have you returned home, to see your space anew, perhaps seeing new tasks that will need to be done, perhaps admiring the place that has accumulated your memories from the past?

For most of us, we return slightly different from who we were before we left. We have had some time for new experiences which add to our knowledge of ourselves. We have met new people and reacquainted ourselves with old friends. We have proudly shared our accomplishments from the past year-- and perhaps we have considered our failures anew. We have the opportunity to see ourselves through a new set of lenses. Our friends and family who live far away remember who we were last time they saw us so we have the opportunity to see ourselves through their eyes. Do you see the change in yourself?

For the Jewish community, September is the beginning of a new lunar year 5775, a time to join with others in a prayer for peace and for the courage and the strength to accomplish our goals for the next year. For me, I appreciate even more the importance of raising money to advance research into Alzheimer's disease. I miss my husband so much; he is alive in body only, eight years after a diagnosis of Alzheimer's disease, 

this dread illness that robs people of their judgment, their self-care skills and their memories.

Goals and Aspirations August 28,2014

What infuses us with a vision of the world as it is supposed to be and what propels us into action to change the world that is?
Is it a gorgeous sunrise or sunset that activates us to march for climate change?
Is it an adventure in a foreign land that excites us as it awakens us to the privileges we have living in the US and motivates us to make sure each of us has the same access to those privileges?
Or is it meeting healthy 80 and 90 year olds who can converse about these issues that wakes us up to walk for the cure for Alzheimer's disease which robs so many of their minds long before their bodies?
What is it for you?

The Everydayness of Alzheimer's Disease August 17, 2014

I am so glad we found something that my husband does willingly when I visit, which makes the time between snack and dinner smoother for him.  My visits usually begin with finding him. He's either walking into and out of residents' rooms or washing his hands in his sink if he's not sleeping in a leather recliner or walking near the kitchen counter eating or requesting a snack and a glass of milk. It's funny that he used to hate milk as a child and drink coffee, but now, he's stopped drinking coffee or tea and requests milk several times each day. The staff all know he must be really thirsty if he asks for or drinks water. Everyone knows he doesn't like water!

When he sees me or realizes I am there, he will respond to a hug and a kiss-- or even offer me one first, but to my sweetheart, I am always there, somewhere. I imagine that he feels it is he who cannot find me, but somehow he is okay with that because sooner or later, he turns around and indeed I am where he can see me.

I check to make sure he is being well looked after, that his supplies are current and not missing, that his bed is made and that his clothes are clean. I speak with the caregivers on shift, make small talk with some of the other residents who also seem to enjoy my visits, greet other family members who may be visiting their loved ones as my spouse and I walk around the unit, indoors and out, but it's still too hot in the afternoons in Arizona to remain outdoors for long stretches of time.

Then we spend lots of time in his room playing catch with a playground ball which we throw or bounce back and forth to each other, retrieving it when I fail to catch it properly, sometimes then sitting in chairs when standing becomes tiring --for me before my husband tires, I still think, although he is more frail now than he has been. But his weight is steady--all those snacks and glasses of milk keep him going when he doesn't care for the food he is served. By playing catch he gets exercise for his arm muscles, he is thinking, making eye contact with me and keeping us both engaged and in the present moment.

Sometimes we take the ball into the main room and roll it back and forth along a table until he sees the dining tables being set with water and juice and he leads me to a table, stands in front of a chair, sits and I push the chair closer to the table. Then it's as if I disappear as he concentrates on his juice and waits for his dinner to be served. I take my cue and leave quietly without saying goodbye.

We Can't Stop Our Feelings from Hurting August 5,2014

An incident yesterday at my husband's memory care center reminded me of another a long time ago.


When I was a young teen, permitted to remain with my parents' company for a short while before they got down to the serious business of playing cards, I overheard my father tell a stale old racist, sexist joke and I saw my mother quietly wince. She had just turned forty and the joke was about an older man wanting to trade his wife for two twenties.


Yesterday Steve and I went to the memory care center together and while I was greeting other visitors and residents, Steve greeted my spouse who was walking around. When I walked over, my husband looked right at me instead of looking down or lately, keeping his eyes closed. He began to speak in his own language which unfortunately we do not understand as I said, "Hi, dear" and gave him a hug.


His response, clear as a bell, "Get rid of those," as he pointed with both hands to my cheeks.


"But Sweetheart" I answered, "I don't have any make-up on my cheeks."
He shook his head and ran his hand gently along my face. I understood and pulled the skin up to my ears as if I were having a face-lift.
"Like that," he said.


From Alzheimer's world as from children, the truth just bursts forth without inhibition. My father loved my mother very much; the timing of her birthday merely reminded him of this old joke, but.....

Happy Birthday July 30, 2014

Yesterday, my dear husband's 85th birthday became an afternoon of joy for all the members of his memory care unit, the staff and the family visitors of other residents. My husband was the first to see the chocolate-iced, chocolate cake-- and the first to taste it too, but eveyone enjoyed eating the cake. The whole room was so quiet as they ate!!

They also enjoyed the tie-dye colored balloons our eleven year old grandson inflated  and tossed among the residents and guests. They were delighted to play and watch the younger folks chase the balloons!

And later we were all invited to the Day Club for the monthly gathering to celebrate all the July birthday folk-- residents, day clubbers and staff. More cake, candles to blow and songs to sing.

We build memories, we share joy wherever we can and feel good about ourselves for having done so. If nothing else, the residents are entertained for an afternoon, we see smiles and I saw a contented spouse ready to be tucked into his favorite leather chair with a cozy blanket for a late afternoon nap.

Birthdays are special. We remember them, look forward to them and use the date to check up on ourselves. Have we achieved our goals for the past year? Are we working toward special times or activities or celebrations? We are definitely grateful for the blessings of health and family we have and enjoy the company of family and friends.

All of those are missing when a person has Alzheimer's disease, especially once confined to a residential care setting. All my husband has is his awareness of the moment, and if life is good right now, that is all that counts. 

Almost Doesn't Count--or Does it? July 23, 2014

I have had an "almost" day today which has left me tired but grateful.

On my way to the courthouse in downtown Phoenix this morning, I was stymied by all the one way traffic with which I am not familiar and at one point I had to cross 5 lanes to make a right hand turn onto the street I needed . After navigating 4 lanes quckly and well, a small grey car appeared from nowhere slamming on his brakes just in time to let me make my turn immediately in front of him.

He followed me into the jurors' parking garage and asked to see my license and registration plus insurance card, which I clumsily produced. I still had to park the car several floors up,  walk to the corner and meet the shuttle bus to take me to the courthouse so I would not be late and face a penalty and a new date to appear!

I thanked him profusely for being such a good driver and apologized for not having seen him. I didn't realize he was a police officer until he told me he would not give me a ticket this time, but to be careful.

By the middle of the afternoon, my name was listed to be on a panel of prospective jurors. We were handed our number cards, herded to the seventh floor and waited some more. At long last a young blond woman in a calf length black robe appeared and told us the case was settled and we were dismissed! The third "almost."

On the way home, I realized the gas tank had only 36 miles left until empty and I was more than that away from home. I decided not to take the highway and stopped at two stations, waiting online until I realized the cars at the pumps had no drivers! Neither station had gasoline pumps that were operational! Driving slowly on the local streets, I finally found a station on my side of the road- no more crossing lanes today, thank you and arrived at the memory care center to see my dear husband cuddly wrapped in his favorite angel blanket from his bed, snuggled on a leather chair where others were watching tv. The staff member said he'd been content there since he arrived at two o"clock, not even asking for his milk and cookes.

So the temperature being 115, I came home to a cold glass of Prosecco, hummus, carrots and sugar snap peas.

What it's Really Like July 21, 2014

A woman wrote to me this week stating "Only someone who has lived with this disease knows what it is really like."

True enough, but those who are experiencing Alzheimer's disease in a loved one are surprised and disturbed by it every day. It is not "really like" anything else because it is not predictable, one cannot plan for the future. A new arrival at our support group tried to assess the time line of the other participants. "When did your spouse stop asking the same questions repeatedly? "When did he/she stop being able to order from a menu? recognize the food he was eating? Use the bathroom appropriately? stop hiding things all over the house? 

He was so upset that his wife of 47 years no longer knows who he is and asks who the man is that "just walked in?" He is her son.

There was lively discussion around the table. Each participant could identify not only with the behavioral changes of the afflicted person, but with the spouse's confusion and frustration.Everyone smiled indulgently, knowing that the denial was still present in this husband who was trying so hard not to lose his wife.

Not that he was afraid she was going to die, but that the relationship between them, the balance they had achieved with each other, the trust that neither one would do something that would jeopardize the family was in peril. Really it has long been gone, but he is only now beginning to realize the toll taking care of her is having on him, physically and emotionally and only now, five years after the diagnosis was he willing to reach out to a support group.

Another strong issue occurs when the person with Alzheimer's disease is no longer safe at home, cannot be left alone, does not recognize his or her surroundings. Family members feel so strongly that it is their responsibility to care for family members, they do not make adequate financial plans for this possibility. Emotionally family members cannot leave the person in the facility without remaining there themselves a great part of each day. They fear leaving their parent or spouse in the hands of "strangers." What if they don't do what the loved one wants? They feel responsible--and in so doing they actually delay the adjustment they so need to reduce their stress.

No, there is "nothing like" Alzheimer's disease but the comradery that support groups can offer each other helps us cope and begin to establish an individual identity for ourselves once again. 

Return July 11, 2014

Back from vacation and first to visit my husband at the memory care home. Before I left, I had been "sure" my husband no longer knew who I was and responded to me with what amounted to indifference. I was despondent, sad and lonely, even while I was visitng with him.

I have had to reevaluate my prior conclusions this afternoon, when, after receiving me with a hug and permitting me to kiss him, my husband said to my son, "That's my wife."

Whether the "fog" of Alzheimer's lifted briefly and he soon forgot again or not, it proves we cannot ever forget the humanity of the beloved person whose brain is deteriorating from this dread disease.

I also believed my spouse no longer  has any concept of time except that provided by regularly spaced meals, waking and bedtime routines. The staff reports he looks for me all the time; sometimes he is delighted when I appear, other times not so much. Did he know I was away for longer than a day this time? He does not seem disturbed by my absence but was clearly reassured by my return.

At earlier stages of Alzheimer's disease, my husband minded very much if I left the room where he was, even for a few minutes. If he couldn't find me, he felt lost. At that time, he was frightened of his loss of cognitive functioning and he depended on me to protect him and to help him understand his world as it was shrinking around him.

I felt important, responsible and frightened too.  I couldn't leave him; he went wth me wherever I went and I planned activities for us tht kept us occupied the whole day. He trusted me to keep him well which of course I was not able to do.

It is now eight years since his diagnosis and three years that he resides in a memory care facility and he has accepted assistnce from any of the red-shirted helpers who are friendly, smiling and accommodating. The burden of his everyday care has been lifted from my shoulders. I am able to schedule activities for myself, create new interests and yes, even go on a yearly vacation, confident that his needs are being met and that he is content.

By taking time out for myself, I can see our life with new perspective, I can remain in the moment for us both during our daily visits. I can be more fully "here" after having spent time "there."

Anxious Dependence June 22, 2014

In the early stages of Alzheimer's disease the spouse attaches him or herself to the other, tagging along, asking the same questions repeatedly, criticizing the tasks the healthy person has assumed. We label this behavior "dependence" because the person doesn't trust him or herself to perform these tasks adequately or to remember the day's agenda. 

The ability to recall is missing sooner than the ability to recognize, so the person sees what the spouse is doing and can see that it is not accomplished with the precision or expectation he or she still knows how to do.

It is at this beginning stage that the person asks about family members who are no longer here, parents and perhaps siblings who have died or live far away. Long term memory remains intact while short term memory disappears, but the confidence in one's memory is gone and  folks need the reassurance that they do indeed remember long ago events and people.

As time passes, the person really does need help showering, dressing, being driven rather than driving; sometimes these are accepted and sometimes the person fights against his or her recognizable skill diminishment.What is known or felt is not alway discussed- and consequently the spouse who has become the caregiver doesn't talk about it either. It seems easier that way.

So Alzheimer's disease remains "in the closet" and the couple continues to socialize with friends and relatives--until an event occurs that changes the balance. One husband I heard about told his wife he didn't want to be put in the position of having to entertain a friend's husband as he asks too many quesitons repeatedly and could not keep up with the conversation. The couple was not invited again. In other instances an Alzheimer's diseased person took food from a serving plate with his fingers, or used her own fork instead of a serving fork. These friends no longer invited them either, increasing the isolation of the couple and especially of the care provider.

Alzheimer's disease is a form of dementia. The timing and occurrence of symptoms vary. Partners need to be sensitive to the needs of their spouses in the beginning when they are feeling so vulnerable, but need to speak up with family and close friends, to ask for help and even companionship--which occurs when the visitors know what is happening. Just as many Alzheimer's patients can "rally" in social situations for a long time, the rest of us can tolerate difference in behavior when we know what to expect. We all have anxieties, we all have areas where we feel vulnerable; sharing those feelings is human and visiting is kind.

Father's Day June 15, 2014

What do you get for a father who has Alzheimer's disease when it's Father's Day? How do we show him he's special when he doesn't even know maybe who we are?

There are the easy things like vanilla milk shakes and French fries; he likes those any day. A walk outdoors is a favorite activity for him and so is playing catch with him --until he says "enough." or moves his hand from side to side indicating "finished."

The funny thing is we can repeat the walk and the game a few minutes later and he willl enjoy both activities again. Sometimes he will draw with colored pencils or markers; he also enjoys looking at magazine pictures, turning the pages and tearing out the enclosed advertising cards which are often attached to the pages.

For all the fathers in the country who have Alzheimer's disease, use today to make a contribution to the Alzheimer's Association www.alz.org 

For all the fathers out there who are spending the day caring for their beloved wives, make a contribution.

For all the fathers out there who are visiting their parents, caring for their parents who have any kind of dementia, make a contribution to help fund research to discover the cure for this devastating progressive neurological condition.

For all of us who know a father who has Alzheimer's disease, phone or visit; support the family by your presence. 

There is something you can do.

More about Trust June 5, 2014

Have you ever listened to Radiolab? I never have but I attended a program last night where award-winning co-hosts Jad Abumrad and Robert Krulwich demonstrated how difficult it is to trust anyone.Check it out on radiolab.org.

The premise of the program was to guess if you could figure out correctly whether you were going to be scammed or not. For example, if you know a stranger has been given $100.00 and the game is for him to share it with you or lose it entirely, how much would you need to receive in order to be satisfied? 

Because if you give the money back, he forfeits his share as well.

If you are the holder of the money, how much would you give so the receiver doesn't refuse it and no one gets anything?

How it turns out is important mainly to see how the audience predicted it would turn out.

As interesting as it is to see the outcome, the analysis of the audience participation was fascinating. Everyone used their smartphones to vote and the votes were also tallied by gender. Fascinating.

The next game was a real television show from England called Golden Balls. Each contestant held 2 spheres which when twisted open revealed one word each --either STEAL or SPLIT. An amount of money was to be split by the 2 participants if both chose SPLIT or stolen by one if one voted SPLIT and the other said STEAL. The stealer would get all the money. If both said STEAL, no one gets anything.

The 2 contestants had a few minutes to convince each other to split the money before they chose. Then the frame was frozen and the audience voted on what the contestants would choose. We were between 40 and 60 percent correct in guessing the outcome  because in 2 out of 3 games the money was indeed stolen.

In an age where we post and purchase so much online, we share so much with strangers, we are more vulnerable than we thought to getting scammed. And the science showed that we are less trustworthy in the US than folks are in Africa or other smaller more homogeneous societies where these experiments were also tried.

Back to last week's post, I will be less trusting in the future, choosing what I say to whom with more caution than before. How about you?

Can Antidepressants Prevent Alzheimer's ? May 15, 2014

For the past two months articles have been appearing showing that, in healthy human volunteers, the antidepressant Celexa, was able to reduce the amount of amyloid in the bloodstream.

Previously, a 50 mg dose equivalent of celexa administered to mice was able to reduce the amount of amyloid significantly.

Don't run out and get yourselves prescriptions however. The researchers don't know yet if indeed reducing amyloid will prevent Alzheimer's disease.They do know that celexa doesn't remove the plaques in the brain. Once they are there, it's too late and that can be 20 years before any symptoms appear!

But wouldn't it be nice to imagine that all the depressives who have been taking meds for years would be spared this awful disease? Just like the professor from Ohio State whose research showed the benefit of cannabis in preventing Alzheimer's disease. We'll get some clue as the youngest of the baby boomers age and the incidence of Alzheimer's disease does not increase as it is predicted.

When my husband was first showing signs of dementia, the doctor thought he was depressed and prescribed antidepressants but he felt less clear-headed and more agitated while taking them and stopped. One man I know from the nursing home-he visits a resident there frequently while I am also visiting-- has had symptoms and a diagnosis of Alzheimer's disease for the past two years. He takes coconut oil, herbs and supplements without any prescription medications and has maintained both a positive attitude and basic self care skills for this time. His wife manages his life, drives the car, prepares his food, pays the bills, etc. and feels the burden of his illness more than he.

The one good thing about this finding about antidepressants is that it may encourage folks who are at risk for developing Alzheimer's disease to get themselves tested and perhaps to volunteer for a clinical trial. If otherwise healthy adults can reduce the amount of amyloid in their bloodstream before plaques appear in their brains, they may reduce their incidence of the disease. If many people volunteer, we will get the results sooner.

Mother's Day Review May 12, 2014

Not to brag, but as an idea to ponder, this was the 55th year since I became a mother and the most enjoyable, fun, special-feeling Mother's Day since my children were young.

I loved Mother's Day when I was a child; we made breakfast in bed for our mother and as eldest, I got to be in charge of something I really wanted to do. I always loved being in charge, still do, and most folks don't mind after they all realize that everyone has to do whatever it is -my way. 

After I turned eight and our grandparents arrived from Germany after successfully having survived the Holocaust, we celebrated Mother's Day in the afternoon by inviting first two, then three grandparents after my grandmother arrived the following year from Switzerland where she survived the atrocities.

These were joyful affairs where the children were always more vocally and affectionately celebrated than the elders, but there was always good food and plenty of home-baked goodies.

When my own children were small, I basked in their hand-made cards and projects lovingly created in school or at home, hand prints, silhouettes, flowers of paper or seeds which they sprouted.

I guess Mother's Day changed for me when my grandmothers passed, my sisters married and I became a single parent. No one took charge, including me, of making my day special any longer as we continued to celebrate with dinner for everyone, appreciating the next generation of children and watching the talent shows they devised for our enjoyment.

Now I am the grandmother generation. I moved to Arizona to live near my children so they could help me care for my second husband who has Alzheimer's disease and my grandsons are old enough to take charge of the day to make it memorable for their mother and for me. Were it not for my husband's illness, we would still be in New York and yesterday could not have happened. Good things can happen even when all looks barren and bleak; we carved out a time for a visit to the nursing home in the afternoon where he was in a good mood, wandering the halls as usual, but ready to play catch, look at pictorial magazines and enjoy eating an apple.

"You're Not Helping" May 5, 2014

Happy Cinquo de Mayo everyone. It is surely a huge holiday here in Arizona. Even in the nursing home they had a celebratory luncheon  featuring Mexican rice and beans and an enchilada!

Of course the traditonal fiestas include cervesa, which is beer to all you non-Hispanics.

I am continuing to learn new lessons and to re-learn old lessons I thought I had mastered when it comes to caring for a loved one who has dementia. 

Whenever as adults we are in a caregiver mode, we cannot expect anytning from the care receiver to meet our emotional needs. We need to rely on equal partners for our needs to be met--lovers, spouses,friends--or  when we are lucky enough or young enough--our healthy parents, siblings or other relatives.

 

This is a lesson that needs repeating all the time because we trick ourselves into believing a dependent person can be there for us. They may love us, be grateful to us, make us rise to a level of caring we never knew we were capable of achieving. We may be proud of them "chip off the old block" and all of that- but the caregiver is always in that dominant unequal position vis-a-vis the person or persons receiving care.It is very hard to switch into that role and equally difficult to switch out of it when the children are grown for example or when a person who is ill, recovers.

When a spouse or a parent develops dementia and more specifically Alzheimer's disease or fronto-temporal lobe dementia the balance shifts and it is no longer about the caregiver--it is only about the care receiver. It becomes the caregiver's responsiblity to make life as pleasant as possible for their loved one while also finding other sources of emotional sustenance for themselves. That's the main reason why support groups are so important.

Being angry when a care receiver refuses a request is about you, not the person you are caring for. Feeling abandoned when the care receiver no longer can say your name is also not about the care receiver. Their forgetfulness has an effect on us, but it is the disease not the person that causes those feelings and the loved one cannot be made to feel responsible for his or her forgetfulness.

Also when we visit or spend time with a care receiver they want our full attention. A toddler who acts up when we are on the phone is a perfect example from child-parent relationships. And with my husband this week, a care worker asked innocently what he was like before he became ill. I spent a few minutes standing next to my husband tellling her all good things about my husband when he stopped me and said, "You're not helping."

At first I thought he didn't like the topic of conversation, that he was chastising me for reminding him of his past life, but no, he wanted to walk and I was standing still. His immediate needs were not being met and he let us know it.

Goodbye to Lindy April 25, 2014

We all met Lindy when he accompanied his wife last year to our support group meetings. We knew him as quiet, intelligent, knowledgeable, sweet and unassuming. He lived at home with his devoted wife until he was unable to care for himself and she was no longer physically capable of caring for him. He finally was able to live in a brand-new assisted living facility where his wife joined him every evening for dinner in the well-appointed chef-run dining room.

Finally because the family was not able to support his placement without financial assistnce from the state. His children were not able to assist financially  but also not helpful in getting this accomplished.

We members of the Alzheimer's support groups I lead or belong to in Arizona have many members who live in second marriages which have been happily in existence for two or three decades after one or both spouses retired. Arizona is of course one of  the most popular retirement destinations and many people marry again after their first beloved partners die and most marry partners who have been bereaved themselves or divorced.

The families I have been privileged to meet really appreciate their good fortune in finding second spouses with whom they are compatible and in living comfortably in warm winters without the strains of professional life or child-rearing. They make new friends, pursue hobbies, volunteer their time in many organizations until --booom- one of them begins to change due to incipient dementia, cognitive impairment and Parkinson's disease or Alzheimer's disease is diagnosed. 

Most of the couples I have met merely shift the responsibilites slowly from the affected person to the more cognitively healthy one, although many of them have physical lmitations themselves. They don't often share their burdens with their own children who live in another state and rarely confide in the affected spouse's children. It is only  when the children arrive for a holiday visit that they begin to sense something is amiss. Some children return home and do nothing until the next visit; some offer helpful suggestions, increase the number of visits and participate in the decision-making. Others less so.

The burden and the stress of caregiving for a beloved spouse weighs heavily on the caregiver. Nancy Reagan called it The Long Goodbye.  It is so helpfu to have adult children and grandchildren support the caregiver to make the affected person's life as meaningful and as safe as possible.

The Visiting Wife is Here April 17, 2014

Just as new parents and grandparents tell all who will listen of the ingenious feats of their newest family members, we caregivers of Alzheimer's diseased spouses and parents reduce the tension in our lives and in our support meetings by recounting the antics of our loved ones. For example when my Mom had Alzheimer's disease and was in the middle stage of the disease she no longer could hostess or prepare food for herself or others, but when she greeted vistors she always continued to ask "Can I get you anything?" I tell this story as well as the fact that Mom could play the piano "get music out of that" which is what she would say anytime she saw a piano.Then she would sit at the piano and play parts of classical pieces she recalled until three months before she died.

My husband has been in out of home placement due to his agitation, aggression and violent behavior for three years now. I visit daily and my son visits at least once each week when I am in town and more frequently if I am away. We did not know for a while whether my husband recognizes us still, as his speech is less intelligible all the time and he no longer calls us by name. He hold his arms out for a hug whenever anyone comes to visit him or the other residents who have been at the home with him for a

significant period of time.His speech is usually clear only when he needs something such as food or assistance in the bathroom. This in itself is amazing. He sounds just like his pre-Alzheimer's disease self when he is demanding. Sometimes he asks for a banana or an apple, milk or coffee specifically. Mostly he says "I'm hungry."

With me he directs me to walk, to "get up" if I sit. "Let's get out of here" is still a favorite refrain but when we do leave the premises his wish is to return quickly to the comfort of his familiar surroundings."Let's go back" he will state clearly. Sometimes he is annoyed with the leaves that have fallen on the path or the sidewalk or with the temperature. "It's too hot," he will say or "I'm cold."

He is quite anxious lately and seems to need to walk all the time except whe he naps.

So we were really amazed this week, when Steve entered the unit, saw my husband walking, greeted him and said "Look who I brought with me." My husband turned, saw me, turned back to Steve and said, "The visiting wife is here." So now I have the validation I have been seeking for several months. Inside his head and his heart, sometimes, my husband still knows who I am and that knowledge makes it all worthwhile and lifts my spirits.

Clearing the Fog April 9, 2014

When I get sidetracked it is often difficult to return to routines I find fulfilling and helpful. Thus, when my husband became ill last month, I stopped writing--including this blog-- even though he has since fully recovered and is requiring less of my time visitng and worrying.

When there is a difficult problem I need to solve, I seem to get lost in a fog with only the problem and its subsequent decisions and behaviors taking up all of my energy; the rest of my days seem to go by on automatic pilot even after the crisis has past, usually until someone calls me on my neglect.

It is so helpful to me when a friend phones and says "I've missed you at the gym. Are you all right?"

This time it was a friend from NY who phoned and asked why I had not written a blog entry since March 18th. It is time to awaken to the beauty of the Arizona Spring - April when the cactus bloom and the desert is alive with color!

I attended an Alzheimer's Association Support Group Facilitator's Training session yeaterday about the need for healthy as well as symptomatic folks to volunteer for clinical trials at the Alzheimer's Institutes. The speaker stated it was due to the thousands of volunteers that an antivirus was found to treat HIV-AIDS. We need to find a cure for Alzheimer's disease! It is so difficult to watch the fog around my husband deepen which locks him far from us who love him.

Clearing the fog is sometimes as simple as cleaning our eyeglasses and seeing the world more directly. Sometimes it is confronting an issue that seems too difficult to tackle; facing it head-on, asking for help will often clear my head so I can deal with whatever I have been avoiding.

And now preparing for the holiday will give me the lift I need. Passover and Easter are times of rebirth, revitalization, of reconnectiion with friends and family. It is time in April to remember the six million who perished under the tyranny of Nazism and it is also the time to celebrate life, to appreciate the blessings we have and to purposely enjoy the relationships old and new we have made, to invite others to share in the bounty of the spring fruits and vegetables and to share ideas and companionship.

Happy Passover and Happy Easter.

Illness March 18, 2014

When my children were young, I was always so upset when they were sick-- and so fortunate that none of them was sick often or severely-- but as parents, we worry. What can we do to make them comfortable? When do we need to see the physician? When do we need antibiotics or just let the flu or cold run  its course?

This week, my husband is ill; he has a chest cold and similar to his behavior during the many years when he was healthy, he wants nothing more than to be left alone when he is sick. But just as when my children were young, my husband who has Alzheimer's disease cnnot tell me his symptoms, cannot make good decisions regarding his health or anything else and it is so hard to just sit there, hold his hand, place a cold cloth on his forehead, give him tea with honey and let him rest.

It seems as if he has aged ten years in the past week; he no longer greets me as someone special in his life. I am merely one of the kind people who care for him on a daily basis. It is so sad to see his stooped form walkng slowly from the dining table to the recliner, relating to no one, eating very little.

What can I do? I can increase my diligence to advocating for this disease, to advocate for increased funding to provide research to find a cure for this devastating slow deteriorating brain disease -and to refute claims by some that this disease is merely the result of an aging brain!!!

My grandson and I had a late brakfast at our favorite restaurant ysterday and overheard a conversation at another two tables. At one table a man sat alone, a widower for 30 years who said his children swore to disown him and never let him see his grandchildren again if he dated or married another woman, an edict he has followed all these years!  A man across from him, a minister, said his wife is in a home; she has Alzheimer's disease and was diagnosed in 2001. His seatmate lost his wife to Alzheimer's disease 4 years ago. 

Maybe it is because I live in a state with a large population of older adults, maybe I listen for these stories more now, but when I spoke at a church last Sunday, almost everyone's hand went up when I asked how many folks knew someone who has Alzheimer's disease. I think the incidence has been increasing. Is it because we live longer now?

New finding in blood test for Alzheimer's disease --explained March 14, 2014

Much has been written in the past few days about a new study which has produced a blood test which  will some day be able to tell if you will get Alzheimer's disease. 

But if that's all you know, you are not well- enough informed. So let me share what knowledge I have about the test , the prognosis and what some of us have already chosen to help ourselves--and you can, too.

The study took healthy, nonsymptomatic 70 year olds as their subjects and tested their blood. Then they followed these people and discovered that some of them developed symptoms of mild cognitive decline or Alzheimer's disease a mere two years later!. The researchers went back to the lab with their new blood samples and began to compare.

They found that 90% of the folks who developed Alzheimer's disease or mild Cognitive Impairment had low levels of lipids in their blood at age 70. So far, the researchers have not stated which lipids were lower and they have not compared their results with the tau and beta amyloid studies, so this test is just at the beginning stages of development.

What are lipids?

Lipids are organic compounds that contain the same elements as carbohydrates: carbon, hydrogen, and oxygen. However, the hydrogen-to-oxygen ratio is always greater than 2:1. More important for biological systems, the carbon-to-hydrogen bonds are nonpolar covalent, which means that lipids are fat soluble and will not dissolve in water. There are four biologically important lipids:

• Fats
• Waxes
• Phosolipids
• Steroids

Read more: The Chemistry of Biology: Lipids | Infoplease.com http://www.infoplease.com/cig/biology/lipids.html#ixzz2vy3BQ5gH

What can we do? What has my physician already started me doing?

We can make sure we eat enough Omege-3's and other fatty acids, eat peanut oil and olive oil and reduce our worry about cholesterol, unless we are advised by our cardiologists that we have heart disease. Be avised that beyond cancer and heart disease, Alzheimer's disease is the largest cause of death in this country right now.

When One Door Closes, Another Door Opens March 7, 2014

For spouses or live-at-home adult children, caring for someone we love begins slowly. First it feels like a good, helpful thing to be of assistance to a formerly independent person. I never knew how I could help my husband; he knew how to do everything he needed for himself. It was even difficult to plan a gift for him as he bought what he wanted when he felt the need or desire.

But slowly he became dependent on me and my world narrowed to be with him which I enjoyed until the balance between us shifted significantly and I became his caregiver--and nothing else. There wasn't room, physically or emotionally. I felt drained.

I discovered journalling to relieve my stress and the computer permitted me to be present for my husband and write until I had enough material  to write a book.

Not all caregivers find this particular outlet, but we all need to find something other than caregiving to sustain us. Support groups help because other friends and family sometimes don't understand the stresses of caregiving a person with dementia-related illnesses. We need to have other outlets because when the final separation occurs, it always seems so sudden and the world of the caregiver feels empty.

In one of my support groups now, six members continue to participate altough they have lost their spouses or parent. In the other support group three members continue to participate after their spouses passed away. Those of us whose spouses or parent reside in a memory care unit are having difficulty transitioning from caregiver to single adult.

I have continued writing and my second book The Secret Key-A Journey of Discovery Generations After the Holocaust has been accepted for publication by Inkwell Productions who will also reissue Put That Knife Away. I will continue to speak with groups about Alzheimer's disease and I have begun work on what will now be my third book which will describe the difficult process of placing a loved one in a care setting outside his/her home, probably titled The Trauma of Out of Home Placement.

Stay tuned!

The Concept of Time February 23, 2014

How differently the passing of time feels depending on what I am doing and what I try to avoid as long as possible-like getting the annual paperwork ready for the accountant.

How quckly an hour passes when I am working at the computer and how slowly a half hour moves when I arrive early for a meeting. How long it takes for the traffic light to turn green when I am late for a gym class and how long the class feels when we are exercising with heavy weights!

And when I spend time at the memory care center, I realize my husband has no sense of time whatsoever. His day is marked by his bodily functions, eat, sleep, digest, walk, sit, sleep some more and walk some more. Once in a while my husband has a moment of lucidity as today a careworker tells me he asked her, "Will you watch a movie with me?" 

She responded, "What is the movie about? " He was holding a DVD disc in its cover.

"I don't know," he answered, "That's why I want to watch it."

The Sound of Music was playing at the time, but he paid the tv no attention. Sometimes it seems as if he tunes the whole world out and attends to problems and situations in his head, mumbling about solutions that he is trying to work out.

Just as the careworkers rotate their shifts and the units to which they are asigned, my husband takes my appearances and disappearances in stride. His needs are being met; he feels safe and secure as long as he sees me regularly. He holds my hand as we walk together. He repeats "Let's get out of here" or "I don't like this one bit." If I miss a day, he wanders the halls looking for me, the eternal optimist, loving and trusting that I will return.

This is such a devastating disease, destroying brain cells and the ability to communicate. He hates what is happening to him, but I think it is a misnomer to say he is an Alzheimer "sufferer." From two years before the diagnosis and as long as he could think clearly, he fought to keep his life manageable and productive.He tried to be as independent as possible for as long as he could and now he is content to be cared for by others. We who knew him before, remember him and the time we spent lovingly together, but we also appreciate him now and we still build memories of the time we spend together.

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."