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The Ribbon - Care for Caregivers
Volume 5, Issue 19
September 16, 2001
1104A Murfreesboro Pike PMB 114
Nashville, TN 37217-1918

Our hearts ache, our eyes are dry from shedding so many tears, our knees are sore from praying....the horrific attack on Tuesday has changed our lives forever. We hope that none of you have family or friends who are missing or who were killed during the tragedy. If you do, please let us know so that we can give you the support you need. Our family of friends are the greatest support group we could ever ask for.

We also ask that you please do not fall into the way of thinking that the attackers want. Do not blame a whole race or religion for what a few have done. Put the anger where it belongs...towards the attackers. The saddest thing I've heard is when my daughter told me about a button a teenage cashier wore. He looked like he might have been from Arabia or somewhere similar. His button said, "I am Christian. Please do not hate me". Has it come to this? Why should a young man have to wear a button to keep hatred or violence from coming his way? Please, do not do this to your fellow humans.

Before I Forget
The PWiD's Perspective

From, a member of DASN

Maybe the following can help caretakers and significant others understand us better:

The word DEMENTIA has eight letters, each one standing for something key in unlocking the door too the mysteries on the other side.

D stands for our increasing need for Dignity, which bolsters our waining self-worth and social standing, which is to us like the wind that fills the sail that moves our boat.

E the first, is for our Emotionalism. We are sometimes quite busy setting off or just noticing fire-works... it seems very natural to us, just as the behavior of a developing child is tolerated and understood with wisdom, the same is needed and natural for the undeveloping adult.

M is for Misplaced things, words, thoughts and feelings. Far from being lost, yet we scatter these as naturally as a maple tree in the Fall. And our true colors... we need you to notice and respond.

E the second, is for Energy which is a lot like a model T Ford. Sometimes we chug along straight and steady, and other times we can bearly make it to the top of the hill. Engine additives (medicines) can make a big difference, but other times we just do better sitting in the sun out in front of the house.

N is for Noticing. Golly how frustrated we can get sometimes. Its like were in the forth grade and the new teacher seems to notice only the mistakes and not the creativity or underlying but invisable effort. We want so much to be appreciated for our efforts.

T is for Talking. We need to talk, express ourselves and be listened to, slowly and carefully, almost as if we speak a foreign language. And interruptions to our trains of thought almost always end in derailments. Being listened to patiently to the point of understanding is the balm of life for us.

I is for Intellect. Just because were demented does not at all mean we're stupid. We need stimulation, activity and mental exercise. We need to contribute. We need partners and friends who don't have prejudiced minds and look down on us just because of name of our illnesses.

And finally...

A is for Adjustment. Its like two steps forward and one back or vise versa. But it is vital to recognize and get in tune with trends and changes in our ways of doing things in all respects. Really, its all inevitable yet challenging; sometimes broken but sometimes brave; maybe frustrating but always attempting to save.... us.

Preparing for Change and Dealing with Resistance

"In life we cannot avoid change, we cannot avoid loss. Freedom and happiness are found in the flexibility and ease with which we move through change."

-- Jack Kornfield, "Buddha's Little Instruction Book"

The fear, lack of experience, the ever present grieving issues, as we watch our people lose skills one by one are compounded by one thing and that is our reluctance to face change.

I am reminded about how long I fought getting a hospital bed in our home for Tom. He was bed-ridden for two years before I finally submitted. The gymnastics our aides and I went through to lift and move him and clean him was crazy now that I think about it. He was unable to hold any position in bed without propping him up and it was like lifting dead weight every time I tried to sit him up.It was after Hospice came on board that someone dared to suggest it was time to get 'the bed'. They described how the hospital bed would alleviate all that effort. I went into a depression that lasted for days at the mere thought of that bed. I totally rejected it, the details of which are available in my book and on this page in "The Hospital Bed". It's not that I didn't understand the reasons for getting a hospital bed, I was more preoccupied with yet another little death to process. That bed marked the beginning of the end of our life together in ways nothing else did. And for what it is worth, it was our doctor who finally got me to take that step. She looked at me and said...

"You don't have a hospital bed? Beverly, it is time. It's too much stress on you and it isn't good for Tom. Get the bed!"

The truth is I didn't welcome change any more than the rest of the world. The fear of change keeps us in abusive relationships, jobs we hate, with people we don't like, and in situations that do very little for our sense of self. In varying degrees we all struggle with change. Everything new that happens to us is greeted with a vague sense of reluctance whether they are things we want to happen or things we fear happening. How we ultimately navigate our lives depends a great deal on how we deal with change, and the fear response attached to the specter of change.

However, most of us find, as life unfolds, that the biggest fear is fear itself.

Rarely is anything as bad as we image it will be. Once we make those steps forward we find they are simply steps, and life goes on. After a while the steps become less fearful and we learn that what we have handled in life is a measure of our strength and a predictor of how we will handle what is still ahead of us. If we're really insightful we discover that we have become the people we are because of all those steps.

Even those of us who quietly accept the responsibilities of taking in our Alzheimer's family members are filled with uncertainties and reluctance.

As I've said elsewhere, we are all reluctant caregivers. None of us are prepared for what is ahead of us. Having been through the changes that Alzheimer's Disease brought to my life, and having somehow managed to deal with them I sit here, dreading the prospect that my mother might one day need to be cared for. She is a remarkably healthy, active, 80 plus year old women who's golf and bowling schedules are so important to her that it is difficult to get a visit out of her. (We live 2,000 miles apart). I know I've done this level of care before and I can do it again if I have to, but I hope and pray she doesn't have to go through a long or painful illness. In fact my fears of her becoming dependent are only exceeded by her fears of becoming dependent. Most of us are going to face care issues either with a spouse or parent, if not ourselves at some point in our future and the vast majority of us will be dealing with incontinence issues on one level or another. How we cross the lines and enter the private space of someone who has been in charge of their own lives is the barrier to care. How can the roles change leaving everyone with some semblance of dignity and control? Its a two way street, a give and take for all the parties involved in this drama and it isn't welcomed by anyone.

We, as adults have worked hard to get where we are.

Not all of us are in a financial position to assume responsibilities for parents or spouses.

Not all of us have lasting bonds with our family members.

Not all of us are prepared to take on challenges that are very frightening while we are still dealing with our own children or spouses or careers.

Not all of us feel we should have to assume responsibilities at a time when we finally felt it was going to be our turn to get a breather.

Some of us have a life that is finally beginning to work for us and we don't want it tampered with.

Given our druthers who needs it? If only the flow of life could be controlled.

My friend Debi said it best when faced with her mother's increasing dementia and the choice to either institutionalize her or move in with her. She moved in with great reluctance. Three years later she said this to me:

"Taking on Mom's challenges was a lot like dealing with an unplanned pregnancy. Here we are three years later and I wouldn't have missed the moments we've shared for all the world."

Having been in your shoes and having the luxury of hind-sight I also know that there are reasons why we avoid taking charge and I wandered in and out of the four possible categories I list below as much as anyone else.

The Hope Springs Eternal Syndrome:
In the early stages of Alzheimer's Disease the family member is subjected to on-again, off-again behaviors that are very upsetting for the caregiver who can't help but take some of the behaviors personally.

While the family member might have more "good days" than "bad days", life is still very tentative as to which will be good days and which won't. The caregiver tends to live in the constant hope that the troublesome behaviors will go away, the occasional good day being proof positive that it is possible. This tends to bog the caregiver down. They also don't really see the depth of the developments at first because they are living so close to them. They lose sight of how much they really are doing for their person. The routine becomes so 'normal' that is hardly noticed until something dramatic happens such as the early stages of incontinence. This period is very isolating for the caregiver. It is during this period that the "Conspiracy of Silence," develops between the primary caregiver and the family member. They don't want others to know the extent of what is happening and they still think with enough help (or hoop jumping depending on how you look at it) they'll get better. The good days are proof positive that things are improving. Only they don't. Unfortunately the "good days" always seem to happen when a family member, not involved in the day-to-day care, comes to visit, and you can depend on it happening the day of the doctor's visit. Your person will most likely shine during this exam, having risen to their highest level of functioning for the occasion. And so, any criticism or observations the caregiver does offer to the contrary will be greeted with denial by your person and possible skepticism by the doctor. To bring up the fact that your family member has been losing ground gets lost in feelings of intimidation, failure, and relief that the family member seems so on top for a change. And again, the hope that this is the start of a positive trend.

The caregiver, on many levels, is also afraid to bring the realities out into the open because of some irrational feeling that to utter the words is to make them so.

And, at the same time, they also feel a deep need to preserve their person's sense of themselves. It is very difficult to contradict a family member in front of others, and the doctor is someone you very much need to respect your person. He/she represents a huge authority figure in both your lives, and of course, the day after the Doctor's visit, the problems begin anew. The caregiver has missed an opportunity to discuss options and what to expect with a very important member of their team. What happens in the instance of a family member's visit, is that the visitor is there for only a short time, the family member is still able to pull it together for short periods, and the visitor leaves questioning the caregiver's claims that the family member is having real problems. Denial isn't just limited to the primary caregiver. Instead of getting the support the caregiver needs, the caregiver is castigated for being over-protective, controlling, unrealistic and the one with the problem. Caregivers find themselves involved in these types of situations with family members, friends and other ancillary service providers throughout the early stages of care. You must keep in mind that these people are only seeing your person for a short period of time and they have no base of caparison by which to evaluate your person's behaviors or needs, except for what you tell them. Try not to let yourself feel frustrated by this experience and try not to be intimidated by it. We all go through these situations, especially in the early stages of this disease. Try to prioritize who you wish to expend energy on. The uninvited stranger from your place of worship is less of a priority than your doctor, your immediate family, or your service providers. You walk away from the former, you pursue a place to talk candidly with the latter. As for other family members. The only way to instill trust and open a dialogue is to be there for more than a few minutes at a time. Telephone calls alone don't cut it, because the conspiracy of silence is a formidable barrier to information about what is really going on.

The I Can't Ask For Help but You Should Be Able to Read My Mind Syndrome:

This is the situation in which the caregiver knows he/she is in trouble but cannot or won't ask for help. They drop hints, all of which are open to misinterpretation, wait for their needs to be met, which aren't, and then feel angry because they've been abandoned. This is a very difficult barrier for any other interested party to break through, particularly adult children. This behavior forces everyone to play "Twenty Questions". There is a great deal of anger and denial tied up in this behavior and most of that response evolves out of the isolation that takes over the caregiver's life. They feel alone and they are alone. They don't know how to ask for the help they need. Unfortunately this behavior carries over into many areas.

The caregiver has spent a major portion of the day getting up the nerve to call the local day-care program for information, the voice mail is so intimidating she forgets to leave her phone number. The director doesn't call back, the caregiver takes it as rejection and doesn't try again.

The doctor dismisses the caregiver's questions because they don't seem relevant, the caregiver feels belittled, when the reality is that the caregiver didn't adequately express what they were trying tosay and the doctor was so preoccupied the nuances were missed. The caregiver talks about changing doctors. This may be a good thing if the doctor generally dismisses input.

The caregiver doesn't attend a support group for two months and no one calls to ask why, they interpret it as not caring about them and they stop attending altogether.

They call Senior Services to inquire about a volunteer, they get voice mail, and not knowing exactly what to ask for, they hang up without leaving any message. They write senior services off their list.

They drop hints in a very circuitous manner, remain vague about their needs and their family member's situation and rarely ask for anything directly. Underlying all of this behavior is a fear of rejection and so the rejection is forthcoming first. "You don't care what happens to me, so don't bother asking, because I know you're not going to help anyway, and besides, any fool can see we need help."

I am reminded of a situation in which a mother, who was facing major changes in her husband's care became very critical of a neighbor who placed her mother in a nursing home for two weeks so that she could go on vacation with her family. When her daughter cut off her complaint with: "You need some time off Mom," but made no offer to take the comment further, such as asking how often Mom had been out of the house on her own in the last month, the mother stopped speaking to the daughter for over a week.

She never told her daughter that she can't go to the bathroom alone anymore because of Dad's needs for supervision.

She never told her daughter she had to drop out of her women's group in her church because she can't leave her husband alone anymore and most of the women are avoiding her anyway.

She never mentioned that she has taken to ordering groceries over the phone because she can't take her father shopping anymore because of his wandering and other behaviors.

She never told her how lonely she is because her husband's friends have all fled as well as her own.

She never told her daughter how much she misses the grandchildren who never visit anymore or how she would just love to get her hair done in peace without having to worry about who is watching Dad.

Another time, the same neighbor casually remarked, to this caregiver, that she should be attending a support group. She became so angry at this woman she stopped talking to her altogether. She expressed her frustration to her daughter in the following words:

"And what am I supposed to do with Dad, strap him on my fender and leave him in the parking lot while I go in and listen to others tell me how hard this is?

So when the adult daughter or son calls and asks how Mom or Dad is doing and the answer is "fine", the adult child has to know that this parent is probably so bottled up inside that they can't get the details out. Instead of feeling relief that all is well in the world, this adult child has got to enter that world. This means spending time with both parents in order to find out what is really going on. These are also parents who "don't want to be a burden to her children". The well parent is caught between protecting the children, protecting the family member, and protecting themselves, but the only result is isolation for everyone. Everyone feels left out and both the caregiver and the family member will be at risk before long.

The What Will the Neighbors Think Syndrome
This is the thinking process in which the caregiver mistakes a sense of privacy for what are really irrational feelings about what others think of them.

It's almost as if the bad things that happen to their family member reflects on them as people. You can be sure that incontinence care is near the top of their list of things they can't talk about. It is more than being in denial, they don't want anyone to know about what is happening and they mean it. In some ways this behavior is less about protecting others from being hurt by the truth of the situation and more about protecting themselves. Their own image is equally at stake with that of their spouse or parent. This is not unusual behavior for people who came out of the Depression Era and who have had to surmount enormous obstacles in their lives. There are still generations of people who have not jumped on the "let's let it all hang out" bandwagon. They are private to a fault and for reasons that are valid to them. Consequently, it isn't until they are in a major crises that anyone finds out how much help they really do need. This behavior probably isn't going to change much, and it has probably colored every aspect of their life since childhood. The adult children and other family members are sticking their heads in the ground if they don't know this and anticipate it. This is very difficult behavior to get through, but what they can't do is ignore it. This is a caregiving situation in which both the family member with Alzheimer's and the caregiver might be at risk. The only solution for the family is to rally and be there. It may mean making family decisions that shift the major portion of the care to another member or members of the family. This can allow the well spouse to continue their involvement as primary caregiver while others assist in decisions and tasks.

One family, I met, relocated their parents to their community when it became evident that the developing Alzheimer's of one parent was beginning to overwhelm the well parent. The family found an apartment near their home but in an area that had most community services within walking distance since neither parent was able to drive. The eldest grandson moved in with the grandparents to be the eyes and ears for the rest of the family as well as assist in the care of his grandfather who had Alzheimer's. In this way, the family had a presence, the well spouse was still the primary caregiver, but the family shared in the care and decision making process. The grandson transferred colleges in order to move in with them, a change he initially had misgivings about because he had friends and a scholarship. He lived with them until his grandfather died. He has become an outspoken advocate for home-care and speaks of the connection he made with his grandparent in spite of Alzheimer's. He is also currently enrolled in medical school.

The I'll Ask for Help When I Need It and Until Then, Don't Bother Me Syndrome
While this caregiver isn't comfortable discussing needs with family, they are able to seek the help of others and utilize that help.

They generally see themselves as resourceful, competent and able. They know how to access services when needed and they have a circle of support they depend on and trust. This is a person who goes to support group meetings, who challenges the rhetoric, who demands services they are entitled to and who carries an aura of authority. However, their behavior also tends to isolate other family members who need to know what is going on. The other family members need to be able to process their own fears too if they are gong to be able to be a productive part of the family unit.

But, there is also this aspect to consider: Admitting increasing care needs to other family members often leaves the caregiver feeling vulnerable and defensive. And caregivers get tired of reiterating the same news over and over to the various members of the family. How many ways can you say the same thing?

"Dad is unable to use the toilet without help."
"Yes, I have to clean his bottom."
"Yes, he is not co-operative and it isn't easy.
"Yes, I could use help."
"No, I don't want to put him in a nursing home. When that time comes, I will let you know."

A woman I met in a support group hasn't told her daughters their father has been incontinent for over a year because she doesn't have the energy to deal with all the commentary.

"Believe me, I'd rather be doing something else with my spare time," she says, "but so far so good, I'm handling it, I doubt if my daughters can understand that."

I suspect this type of caregiver is also indulging in the "I don't want to burden my children," behaviors to some degree, but we have been force fed this concept since the 50's and it isn't easy to give up that cliche. And as unpopular as this statement might be, there are adult children who won't help, who are still bickering with siblings, who have an attachment to an estate they see as theirs, and who do pressure their parent to be rid of "the burden of care". They don't necessarily want to pitch in and help themselves. The courts are full of these situations.

What these family members don't realize is that they haven't saved "Mom" anything by pushing institutionalization.

All they've done is demonstrate what is going to happen to "her" when "she" needs care. And much of their reluctance isn't based in not caring as much as it is based in fear, and loss, unwanted changes in their lives, how they are handling their own grieving process and they too have swallowed the rhetoric. They have no expectations of connection with their ailing parent because no one has told them otherwise and they think their well parent is avoiding reality when they insist a connection still exists for them.

A woman came up to me after I gave a talk at an Alzheimer's Association Fund Raiser.

"My daughters were sitting with me during your talk", she said. "You are one of the few who talk about the love that was there instead of the just the drudgery. I tried to explain that to my daughters when their father got difficult, but all they could see was the trouble. But I could have handled all of it if I got a little help. I couldn't do it alone and I ended up putting him in a nursing home. They told me it was for the best for everyone. His care was too much of a burden.They were very quiet during your talk, and I saw one of my daughters crying when you read that letter another caregiver wrote about the connection he found with his father. I feel angry at my daughters to this day, and I know our relationship has been affected by it, but I don't know if I can ever truly forgive them. My husband died 2 months after he was placed. They never visited him once during that time.

What does one say in this situation? Who knows what the family dynamics were that led to this situation. And, her daughters were as victimized by prevailing thought as was the mother. How could they possibly see the connection their mother felt with their father and for their father when they had been fed nothing but the negative aspects that surround this disease. Why should they think otherwise, after all he didn't even know who they were anymore. I offered that to this mother and suggested that she talk to her daughters about it. Perhaps a grieving group through their local hospice would help them come to terms with what happened.

In short, we caregivers bring as many variables into the caregiving role as the Alzheimer's person brings with their disease.

And if the principal players in the drama are complex that equation is multiplied geometrically when the rest of the family gets involved.

Survival dictates that caregivers learn very early in the process to temper what they tell people about their family member's needs because the response they expect isn't always the response they get.

They watch their friends and relatives flee at the prospect of what this disease will do to their family member and the negative input is further enhanced by the media, the service providers, the medical community and a flock of uninvited strangers.

Is it no wonder that they feel an intense isolation and a deep mistrust as a result?

The bottom line is that the caregiver is in need of as much nurturing as the family member with Alzheimer's needs.

All of the above behaviors, attributed to the various "syndromes" described are in reaction to a lack of love, a loss of love, a need for love, a fear of never being loved.

And one cannot underestimate the bond that develops between the caregiver and the family member.

There are very basic feelings going on that must be recognized by those who live just outside the parameters of this relationship. When love, in it's unconditional sense, is not expressed or demonstrated by others towards the ailing family member that lack of love not only isolates the family member it deeply isolates the caregiver as well. It sends a message that their effort has no more value than has their ailing family member. What affects one has to be absorbed personally by the other because they are no longer two people they are a single force and must be regarded as such.

Preparing for the Changes

Beverly Bigtree Murphy is an outspoken advocate for families facing Alzheimer's disease. She cared for her husband, Tom, at home throughout his illness and was able to use her experience as a Rehabilitation Counselor to get herself and her husband through the stages of this disease. Since his death she published, "He Used To Be Somebody". It is a very accurate case history of how this disease progresses but it is also a love story and one that dwells on the human needs our people have in spite of what this illness does to them. She also has devoted herself to her web page, which not only provides caregivers with practical solutions to the problems they face but it examines the issues of bias towards Alzheimer's and how that bias interferes with our ability to provide the very care our people need. The book can be ordered through Amazon or direct ordered from the publisher through the web page.

Email Bag

From NancCall

Thanks so much for the latest issue. I was finally able to get into the Chat Room last Thurs and really enjoyed talking to the kind and caring people there. Thank you for all your effort to help us in our caregiving. After living with us for over a year, my Mother is in a Retirement home right now but we are looking into Alzheimer's homes in the area as she needs more attention.

NancCall in Illinois



My name is Alex, and I have a grandmother suffering form dementia who refuses to eat and is too old to be fed through a tube or a drip. Surely she will die soon, but I need some poems or words to comfort my relatives, Im not sure if this is the right place to turn for help but wanted to know if you knew any poems or had any suggestions?

thank you,
waiting in anticipation,

Hugs and Peace,
Karen and Jamie

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