The Next Most Difficult Stage of Alzheimer's Disease June 26, 2015

Every new stage of Alzheimer's disease is difficult. Early symptoms which reveal something "off" when we relate to our parents or our spouse frighten us because we suspect what may be coming.

As our suspicions are validated, it is difficult to confront them and get ourselves or our loved ones diagnosed. When we hear the diagnosis and know, it is so hard to realize there is nothing we can do to alter or halt the progression of Alzheimer's disease.

If you have been reading and are prepared, you know how hard it is to change your wills, your own powers of attorney, manage your money and take charge of events you either always shared or left to your parents or spouse to sort out for themselves.

Each change which shows your loved one is losing his or her judgment, decision-making skills and short term memory hurts them, if they are aware of the changes and is hard for us to maintain our cool and not expect what they have lost to be regained.

As caregivers, we attend support groups, we pray, we do what has to be done. We don't talk about bathroom accidents or bedroom concerns--they feel too private to share, but they are so hard to manage, to get used to, to accept as our jobs.

We get used to having our loved one next to us all the time, for their security and ours. We worry less if we can see what they are doing.

Once we cannot manage on our own any longer, it is difficult to admit we need expensive help which may entail changing our own lifestyle further.

My husband and I have been through all of those stages. it is four years that he is living in a facility. Now he is beginning to fall. He hurt his hand and now he has hit his head. He doesn't understand how to use a walker. He is agitated and walks. If he gets a tranquilizing medicine, he becomes so lethargic, no one wants to see him like that. Once again, it is so difficult to find balance.

Noticing Changes in Loved Ones June 3, 2015

It has been a month since I posted to this site. The changes in my spouse are so difficult for me to process. How can he REALLY not know who I am? When I visit, he is passive. He does seem to have connections with his care providers whom he sees regularly, for which I am grateful. 

And they are all young, pleasant looking women, which makes some kind of sense, knowing my husband's fondness for looking at young women. There is still some of his personality recognizable, I guess.

But the subject for this post is a response to the many queries I get from folks who meet me, either for the first time or friends whom I have known for years.

"I think my spouse (mother, father) is going through some changes. Do you think he(she) has Alzheimer's disease?"

Let's begin at the beginning. A disease is something that interferes with daily life. When someone tells me their spouse is getting "hostile" which I gather they know from reading my book Put That Knife Away, there may well be many other reasons for this behavior than any disease. When a parent doesn't remember that you visited or phoned last week, that also is not sufficient for a diagnosis of illness. When a father-in-law whose wife just died wants to be left alone in their home, even though we know he won't be able to manage on his own, we can't jump to the conclusion that his judgment is impaired by a disease. It may be impaired by his loss, his grieving, his desire for everything to stay the same because change is so hard to process.

As a society, we are so afraid of Alzheimer's disease we do many things. We deny its existence or we see symptoms in everyoone we see. Sometimes we see symptoms in ourselves which we deny or become too depressed to deal with them. We either read everything we can online, or we don't deal with it at all.

A disease is something that interferes with everyday life. Obsessing about illness can interfere with daily life and become a disease. Try talking it out with the person you are concerned about. Ask questions. Don't jump to conclusions about your self or your loved ones. Alzheimer's disease is not preventable or curable. Worrying about it won't help. Enjoy your time together, make your days pleasant, take pictures, collect memories and if you are concerned about yourself or your loved one, start a journal and see how often a difficult behavior occurs. Take the journal with you to the person'e next primary care physician appointment and see if an assessment is needed.

Subtle Changes April 30, 2015

When is the appropriate time for a referral to hospice services for an Alzheimer's disease person?

When the subtle changes begin to add up to a pattern of decline.

We were blessed this week by the physician's referral and by the Hospice of the Valley's concurrence that my husband is now eligible for their services. Not only was he assessed by their nurse, he was seen by their social worker and Rabbi Susan visited with him and sang with him this week.

"He made eye contact with me, he nodded at the photo on his table, listened to my singing and then comfortably nodded off," the rabbi reported.

It is good for him to receive visitors who walk with him or play ball. Lately he has been rolling the smaller ball across the kitchen table to another resident, who thinks of my spouse as his friend. Both of them are pretty good at catching the rolling ball. Only once in a while does the staff member have to chase the ball and find where it rolled.

The mind is so complicated and this disease is so strange. Ball playing involves many skills, first and foremost, concentration, remembering what you are doing and remaining focused. You can see that he is interested nd capable of performing this task and continues for a long time to play. There is no smile on his face so we cannot be sure, but being engaged seems to make him feel good.

And of course, my husband has always liked to be active and engaged with life. He was never one to sit around doing nothing or even watch a ball game on tv, except for the World Series or the Super Bowl.

There is Still Shame in an Alzheimer's Disease Diagnosis April 25, 2015

Many of the blogs about caregiving for dementia- diagnosed loved ones have talked about whether to tell or not. Should the care receiver know his or her diagnosis? Will it help or hinder the caregiving relationship?

It is mostly adult children of a parent with dementia who are asking this question. Of course the answer depends on the stage of the dementia, and specifically if the person has Alzheimer's disease, a more specific strain of dementia. Why? Because most dementia patients have long-term memory still available. Most dementia patients lose short term memory but their personalities don't change. The rage and anger responses are quite often limited to persons who are diagnosed with Lewy Body dementia, which often comes with Parkinson's disease, or Alzheimer's disease which messes with the person's ability to separate truth from fiction, today from a long time ago. Alzheimer's disease robs its victims of rational thought processes, so telling them anything requiring logic to understand, doesn't get through the diseased part of the brain!

There is another reason for withholding this information from persons in the Moderate Stage of Alzheimer's disease, other than the fact that they cannot process the information and cannot hold onto the information if indeed they understand it. In many social and economic and regions of our country there is still shame in the diagnosis. For example, one woman was sharing her journey caring for her grandmother. All of a sudden, her voice lowered to a whisper. "You know," she confided, "Grandma became nasty," as she wrinkled her nose.

A man who lives in the same assisted living home as my husband asked me this week, "What is wrong with him?" This man is confined to a wheelchair and my spouse walks. The man speaks and is lucid. He shares,"I talk with him. We have conversations, but I really don't understand what he is saying."

I answered, "He has Alzheimer's disease." The man lowered his voice and said, "Don't worry, I won't tell anyone."

Happy Holidays April 4, 2015

This Spring once again, we have the holidays of both Passover and Easter on the same weekend. Both the Jews and the Christians are grateful for being rescued by an Almighty power several millennia ago.

We are blessed to live in a country where we are free to worship and to rejoice in our own fashion. The theology may be different, but the celebrations are so very similar. We get together with friends and family and we eat!

We even eat some of the same ceremonial foods-- eggs-- which symbolize for us all the rebirth, the emergence of spring, the hope for the future. We all dedicate ourselves anew by initially depriving ourselves of something of value in order to heighten our awareness of the gifts of freedom we have received.

We invite our relatives and friends to gather together in the spirit of love and fellowship, to honor tradition in ways old and new. We plan what to wear, what to bring. We shop for new clothes, we prepare menus, we clean, we cook and look forward to and thoroughly enjoy the gathering.Right?

And then why,  the next day, do we talk about each other in ways familiar, time-honored and not always very nice."Did you hear how ..?" "Did you notice that..?" 

Familiar? Why? From where does this need come to bond with one person over the perceived faults of another? And then of course we wonder--what are the others saying about us?

Let's try this year to be kind to one another- while we are with them and afterwards too. Let's try to look for the good in each other, to really be aware of our blessings of family and friends, without whom, I, for one, would be so alone and bereft.

Agency March 23, 2015

The word AGENCY in psychology or sociology or philosophy means the ability of a person to act in the world. Even a baby has agency when he cries to obtain help, food or relief from pain. The baby is using its capacity for agency when he or she smiles at the caregiver. Very young children often learn to bat their eyelashes and seem to "flirt" to obtain  their wishes from adults.

Babies and young children can do very little for themselves. They depend on parents and teachers to guide them and to protect them from harm. But already by age two, they learn to say "no" and exert their influence on their caregivers. Parents and teachers need to use logic and reason to convince a child to act appropriately. Sometimes rewards and punishments are used to mold a child to the adult's way of being.

By the time a child becomes an adolescent-whenever the change occurs from young adolescent to responsible adolescent, the adults are resource people to whom the young people come for advice, before making their own decisions on how to act in the world.

When the balance in a relationship of adults shifts, we say the husband is "henpecked" or the wife is "submissive" and one or the other exerts more or less control over the relationship. Even in those rellationships, a balance is achieved, with each person deciding to accept or reject what is being offered.

Then if Alzheimer's disease enters their lives, the balance shifts again and one person becomes dominant in the relationship. For a previously submissive partner to be in charge is, at the beginning both a challenge and a power trip. It feels good to be able to care for a previously very independent person. Of course as the disease progresses and the personality of the loved person begins to change, the actual care work is more difficult and the rewards are fewer and fewer.

And now it seems as if my Alzheimer diseased spouse loses all agency, no longer smiles or speaks or demands to have his needs met. He just accepts whatever life offers, passively. He permits himself to be led, he sits, he walks. He recognizes no one. I am grateful his caregivers are kind and anticipate his needs.