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?