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.