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TALKS  &  TOPICS 

Reinventing Rituals

We all come from tribal people if we go back to the ancients and as tribal people we learned the value of responsibilities and duties towards each other.  Ritual played a great part in keeping the bond and promise that people, as individuals, had to each other as groups.  It is suggested that perhaps when we need to spend Saturday morning helping Mom buy groceries because she can no longer drive that we can learn to see that time as a beneficent ritual, something we do happily instead of seeing that task as a piece of time out of our very busy lives.

This talk segues into attitudes about facing the challenges life throws our way and that we often don't have much choice in facing those challenges.  The tasks will still have to be done by someone, and the only real choice we have is whether or not we face those tasks from a place of love or regret.   I use other caregiver experiences as well as my own to emphasize that moments of connection and richness are still possible even in the last stages of Alzheimer's.

Does He Still Know Who You Are?

Caregivers facing Alzheimer's are too often put in the position of defending their attachment to their family members instead of being applauded for their efforts.   The loss of cognitive abilities hits to the core of our own vulnerability and that vulnerability is translated into a jargon so negative and attitudes so biased that the very act of caregiving is demeaned.   By default, our people are systematically stripped of their humanity in ways that would never be visited on any other disease group.    

I use caregiver experience to shatter the notion that caregiving is a burden when it is nothing less than a challenge.  I question those who lump the words commitment and sacrifice with those of martyr and co-dependent.   For what it is worth,  sacrifice and sacrament both come from the same root word and both are about a selfless act of giving.   Dignity is not dependent upon the ability to dress, feed or toilet ourselves.   Those are unfortunate aspects of most terminal illness, but our people are singled out for reasons that aren't based in reality, they are based in bias and discrimination. 

As difficult as it was to lose my husband to this illness, having to deal with the global rejection he felt as his illness progressed was harder.   I chose to see his care as a beneficent gift that ultimately enriched both of our lives.   Whether he could rattle off my name, rank, or serial number was inconsequential.    The bottom line is that my cognitive functions remained intact and I still knew who he was.

It's Just Poop People!

This talk exams the taboos, particularly those that are specific to this illness by comparing how the literature examines the prospect of incontinence care in this disease and others.   I also draw the comparison between parenting and caring for those with this disease.    I feel we all have a basic instinct regarding parenting skills and while some of us are more suited to parenting than others, it is mostly through the positive expectations of others as well as our own ingrained attitudes that allow us to take on the role and make an attempt to succeed at it.    How affective would parents be if only the most negative aspects of child rearing was emphasized?   How successful would new parents be if they were surrounded by expectations of failure.   We caregivers of family members with Alzheimer's are constantly beaten down with the negative input the public feels obligated to lay on us.   Even strangers in parking lots have opinions about where our people should be taken care of.    The consensus seems to revolve about removing them from public view as fast as possible.   Unfortunately, the caregiver is left to figure out the care problems largely on their own. 

This talk encourages caregivers and professionals to begin viewing their tasks in terms of parenting skills instead of drudgery and to challenge a public that thinks we are crazy for taking on these tasks.

Who Looks Forward to Change?    I know I didn't.

The one constant facing families with this disease is that of change.   How we deal with change tends to dictate who will be successful at caregiving and who won't.   For the record, we are all reluctant caregivers.   No one, not even those of us who willingly choose to take on this challenge, enters this role without feelings of dread, entrapment, fear, and some indefinable sense of anger.   The good news is that many of us manage to find a sense of self, a sense of accomplishment, a sense of doing something important for another human being in spite of this disease but we have to allow ourselves the opportunity to grow into this experience the same way we grow into the parenting experience.    

I contend that the key factor in successful caregiving is resiliency.   Resiliency is what allows us to wade through public opinion, tap into our innate resourcefulness and find ways to snatch positive feelings and self worth out of chaos.   In many ways we face going to war with this disease and to continue the comparison, an unwanted war and an unsupported war, and whether we come out of the experience with post traumatic stress or not depends a great deal on how able we are to rise above public opinion and see our people as something more than a disease process.   Stepping over the line and into the private space of our elders is difficult enough without all the emotional overlay that follows this disease, but it is possible to separate yourself from negative expectations, it is possible to set aside an entire life-time of behaviors and interactions with your family member, wipe the slate clean, and begin anew, and it is possible to come out of the experience changed.   Like our young men who went to war as 'boys' and who came back as 'men,' we caregivers experience an opportunity to find a new view of ourselves and our world.   And like those young men and women, we are heroic, and don't let anyone else tell you differently.

What was the dying like?

This was the first question the people in my support group asked after Tom died.   I talk about the services hospice provided as Tom entered the last stage of his illness, how to access this help, and why hospice should be involved, especially in home care.   I talk about the grieving process that followed us  throughout Tom's illness and I talk about Tom's last year.    I challenge the notion that our people die long before the actual event and I use, not only my own first hand experience with the dying process, but the experiences of other caregivers as well.   

Each story is unique and each story challenges the belief that our people are incapable of experiencing love, connection, acceptance and family regard.   Amazingly, these caregivers found a positive view of their experience in spite of this disease and perhaps because of it.  Some of these stories will cause you to rethink some the biased attitudes we have about the awareness our people have in spite of the profound deficits this disease brings upon them.  If you believe in the existence of 'The Soul,' then you have to believe 'The Soul,'  doesn't get Alzheimer's any more than it gets Cancer.   Once you grasp that concept as a possibility, your attitude towards those who get Alzheimer's has to change.

Is it Guilt, or is it Grieving?  

The grieving process begins with the diagnosis.  Every skill lost, every change faced brings with it the full range of mourning.  These are things that people don't talk about and often, grieving is misnamed and called something else such as guilt,  co-dependency, martyrism, or unrealistic wants or needs.  Grieving needs to be recognized for what it is and the process of grieving needs to facilitated by professionals, family members, and friends alike. 

Beverly speaks of her experience and shares what others have gone through.  Renaming feelings accurately helps move through the process of caring for their loved one with a little more dignity and confidence.  Caregivers are able to recognize their own limits as caregivers and are able to grieve at the losses they accurately perceive and then get on with living.

When is it Abuse, and when is it a Caregiver in Need?

Those of us who care at home for our people are particularly vulnerable to a public that doesn't understand the nature of this disease nor the stresses that accompany this disease.    Because of that lack of understanding a standard, that has been set to determine or measure abuse in other situations, doesn't always apply to our situation and caregivers are in danger of coming under the specter of suspicion, and in many cases, personal attack unfairly.    

Our people sometimes yell and scream because of their confusion.   They bruise because their skin quality becomes is so undermined by the inability of the brain to regulate the body's functions that just moving them normally from bed to a wheel chair can cause major bruises.   They mistake their caregivers for strangers and while experiencing deep feelings of fear and confusion strike out at them.   They become emaciated because their bodies no longer glean nutrition from the food they eat no matter how balanced that diet is.    They become incontinent, which in the eyes of many is so abhorrent they can hardly image another human being addressing the needs of that task contentedly.   They don't sleep, and the pacing that often accompanies this symptom results in sleep deprivation of the caregiver as well.   They require constant attention which leaves the caregiver literally trapped with them for what most will describe as "The 36 hour day."    

In the midst of all of this the caregiver is looked upon as symbiotic, co-dependent, controlling, manipulative and overall suspect, because who in their right mind would continue to care for someone who can't even identify who they are adequately?    Many feel the right to express their feelings that the family member belongs in nursing home care in spite of the caregiver's stated commitment, and in a sense, the lack of services, the attitudes of the public which also includes to a large extent, the very people mandated to help us, conspire to make failure at caregiving a self-fulfilling prophecy.   And when the sleep deprivation takes over, or the caregiver is too at a loss to know how to deal with the behaviors, and that last catastrophic episode blows and some neighbor calls the police or social services, the caregiver and the family member get to experience yet another form of horror.   

Do they get help, referral to services, a few tools, some understanding of the disease, or, is the zeal so great to count another statistic on the 'We Got Another Abuser Band Wagon,'  that a hefty fine, a few anger classes and a small notation on the caregiver's record as being guilty of elder abuse the only result?    

This talk isn't about excusing the very real abuse that does happen but it is about taking the time to ask  if our own attitudes and lack of understanding about this disease somehow color how we view the real problems this disease brings with it.    Is it sufficient to point the finger at the caregiver when something goes haywire or do we have an obligation to look deeper, investigate the intent and the options and offer something more than threat of jail or a police record?   Is our obligation one of accusation or help?

Changing Roles. 

How do caregivers handle the dynamics of changing roles as their Alzheimer’s family member becomes more and more dependent? How does everyone hold on to what is left of their dignity? Caregivers need to understand that their reluctance to move into their new roles is based on two things. The first has to do with mourning, morning the losses their family member is experiencing, mourning the loss of what should have been, and mourning the inability to resolve what was. The second evolves out of our basic fear of change and Alzheimer’s Disease brings nothing but change with it. By examining these basic feelings caregivers can find ways to develop confidence and effect a smoother transition into their new role while assuring their family member of their continued place in the family unit.

The Little Deaths.

The chronic illness of a loved one brings with it the constant overlay of mourning and grief for each member of the family as the skills and functioning of a family member are eroded away. Family members must work through numerous little deaths before the main event is even in sight. How each individual family member processes their grief has more to do with the evolving family dynamics than almost anything else. Sadly, few professional helpers recognize that this is what is primarily motivating families facing a long-term care challenge. They call it other things, such as guilt, or fear, or anger, but what propels the emotion and the actions is based in feelings of loss.

The Reluctant Caregiver! 

A mythology has been embraced by the medical community, the media, and the public-at-large, that people with Alzheimer’s Disease must eventually be placed in nursing home care. This belief persists in spite of statistics that state; over 80% of Alzheimer’s elders are maintained at home and vast numbers remain in their homes until they die. While all of us enter the caregiving role with some reluctance, many of us choose home care as our option and have the means to navigate the support systems successfully. Others aren’t as lucky. Their lack of resources, coping skills, and feelings of entrapment serve to demoralize them, and nursing home placement isn’t always a viable option. How do these caregivers circumvent the bias that exists towards them and their family member, develop caregiving skills and learn positive ways to process their fears and feelings of entrapment? This talk discusses the caregiver perspective, how attitudes of professionals influence coping ability in caregivers and ways to open avenues of access to support services for this home-care population.

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