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."