Dearest:  My guest tonight, Sandy Braff, M.A., M.F.T., is a licensed individual, marriage 
and family therapist. Since 1989, she has voluntarily facilitated a weekly Alzheimer's 
Caregiver's Support Group for the San Diego Alzheimer's Association. As we are aging 
ourselves, we often find ourselves coping with our loved ones aging -- suffering from 
dementia or Alzheimer's disease and becoming the caregiver.

Sandy is the co-author of "Staying Connected While Letting Go: The Paradox of Alzheimer's 
Caregiving" with Mary Rose Olenik. 

"You must be able to survive one emotional upheaval after another," says Sandy Braff. 
"Caregivers have been known to put their own lives on hold and become entirely devoted to 
caregiving - making this difficult role even harder, and often compromising their own 
health." Sandy Braff will show us that this needn't happen. 

Welcome to Power Surge, Sandy. We're very informal here. May we call you by your first 
name? 


Sandy Braff:  Please do and thank you for inviting me to your chatroom. 


Dearest:  It's my pleasure to have you. Thank you for coming :) 

Sandy, in the title of your book, what, exactly, is the "paradox" of Alzheimer's 
caregiving?


Sandy Braff:  There are many paradoxes when one is attempting to stay 
connected with a parent who is becoming a different person.  So what happens when
they're dealing with this paradox is that there's what I'd call a dearth of intimacy
and a constant wanting to connect and letting go.  A wanting to stay connected because
of the history of the relationship and the deep attachment but because of the losses
that occur and the anticipation of the losses, to move in and out of the relationship
as you try to avoid the pain. So there are some paradoxes.  

One paradox is the scenario of the love and hate. I love you, I hate you. It's very common
to hear that stated. I want to run away, I want to stay and take care of you.  I wish you 
could be cured, and I want to see an end of suffering.  There are many, many more 
paradoxes between desires and conflicts. 

Paradoxically when you face the reality of the situation, there's a different form of 
paradox.  You become more compassionate and develop more connections. 


Dearest:  I can only speak from a daughter's point of view, but it's very frustrating
to watch one's parent who's always been vital and sharp lose their memories, their verbal 
skills -- from what you've said, it seems as though the actual "intimacy" of the 
relationship changes even without wanting it to and a new sort of relationship forms.
Is that so? 


Sandy Braff:  Yes, you're using the words "intimacy of the relationship" 
changes and everything about the illness is about change.  The person you love changes, 
personality changes, mood changes. The changes in the brain that occur make the person 
unable to do or carry out the tasks of everyday living so there are cognitive changes, 
personality changes, connections because changes in the brain don't allow the loved one
to understand what they're doing and how it affects you. The cognitive changes, the way
a person thinks, reasons, makes judgements, all that changes. Those changes mean that
the person with the illness can no longer can no longer carry on a reasonable lifestyle 
because they can no longer learn new behavior which ultimately means that you have to
make all the changes because you're the only one who can.


JaneS:  My mother who lives in a different part of the state is caring for my dad with 
Alzheimer's and her mother who is 92 and has dementia. My mom understands that she needs 
time apart from them but doesn't know how to make space for herself. I'm working with my 
siblings to help her arrange for a paid caregiver, what else might I do for her? I 
recently spent almost 2 weeks with her and I believe I was an enormous source of comfort.


Sandy Braff:  In-home help is a great resource. Another wonderful resource 
could be for taking your father and grandmother to a daycare.  Daycare provides a 
wonderful, more stimulating environment. They're in a similar peer group and your mother 
would get respite from the day. 

JaneS have you tried anything like that? 


JaneS:  My mom has suggested that to my dad but he responded very negatively.  He still 
wants to be Mr Macho in charge although that is an illusion at this point because he has 
become so reliant on her.  But its difficult for her to make decisions against his will
as that's a dramatic shift in their relationship.


Sandy Braff:  Jane, it might help you to buy the book because we discuss 
people who have these problems about going to a group and offer suggestions.


Feel2young:  Could you please touch on the importance of support groups for caregivers?
I feel this is so important.  Not just emotional help, but knowledge of the disease, and 
ways of finding physical help as well.


Sandy Braff:  I'm very glad that you suggested that I talk about support 
groups. One of the main themes of our book is to allow people to understand how essential 
it is to be in this environment.  For one, you're with people who truly understand exactly 
what you're going through, who can offer suggestions and ideas of how to cope in different 
situations and where you can be educated and also be in a safe environment where you can 
say whatever is on your mind even if you're angry.  You can yell, you can cry, you can let 
it all out  because most people in that group will either have felt that way and will 
think. 


Guest198:  I'm a 41 year old single woman living with my 80-year-old mother with moderate 
dementia. It took me a long time to adjust to being the parent to my parent, but now I 
think she's just adorable. However, she is a real homebody and not comfortable with anyone 
other than family. How do I get respite from that? 


Sandy Braff:  There are many ideas in the book, with wonderful information 
in it.  We make wonderful suggestions about how you can get respite. I can't stress enough 
how important it is for you to have a break. One thing you need to know is that sometimes 
it may actually be the caregiver who is feeling reluctant or guilty about bringing someone 
in and projecting that onto their loved one. I can assure you that your mother will adjust 
if you're kind and firm and bring someone in so that you can get help. No transition is 
easy. Education on the disease is so important.


Dearest:  The book is: Staying Connected While Letting Go: The Paradox of Alzheimer's 
Caregiving by Sandy Braff and Mary Rose Olenik (you can buy it on amazon.com and there
are links on Power Surge to the book as well).


PatC:  My mother has been diagnosed with Alzheimer's. She and my father still live on 
their own and very strongly want to stay that way. My siblings and I are dreading the
time when that is no longer possible. Any suggestion on how to make that transition
when the time comes easier on all of us? 


Sandy Braff:  Do they live in the same vicinity as your parents? 


PatC:  Several of them do. I don't. 


Sandy Braff:  So, one thing that may help is having a family meeting 
possibly with a counselor or a person familiar with the disease so that you can plan
for the future so nothing comes as a shock.  Right now, while your mother is in the
early stages is the time to discuss legal documents such as durable power or attorney
for health and finances and a living will which should be discussed with an elder law 
attorney familiar with Alzheimer's Disease. The reason for the meeting is to make sure 
that everyone's thoughts and goals are voiced and there's consensus about how the care
is going to be given.  The more discussion, the easier the transition, the more 
cooperation among family members.


Guest198:  We had someone come in to be with my mom and she hated the intrusion.  
Admittedly, it was hard for me to because it's my house, but I'm like my mom! We're 
private people, I guess. 


Sandy Braff:  Guest, I think you need to be more clear about what you're 
willing to do for yourself. It is a difficult situation.  Just try again with your mom
in a few weeks.  Have someone come in while you're there, have some coffee or tea 
together. Make it an informal tea party to make things easier.

 
Dearest:  Sandy, I read that statins, the cholesterol-lowering drugs, may also reduce
the risk of developing Alzheimer's disease by as much as 39%. There's also a study,
the Alzheimer's Disease Cooperative Study Group, that will begin a study to find out
if statins can be used to actually treat Alzheimer's disease. Do you know anything about 
this?


Sandy Braff:  These studies do look very hopeful, unfortunately there's more 
research to be done.  Many research articles I've read talk about the importance of 
watching your diet, avoiding high cholesterol foods. 


JaneS:  Some families like mine find the concept of getting outside help or discussing 
family issues with an outsider to be wrong somehow.  How can we overcome this?  What
about overcoming the bias on the part of the caregiver or other family members?


Sandy Braff:  The more isolated you allow yourself to be, the more difficult 
it will be to get help. If there was more time,we could discuss this in more detail, but 
there is information in the book and I'm going to suggest some websites that discuss some 
issues about family of Alzheimer's or elderly parents. Try getting info from websites 
about family meetings from www.caregiver.org.   For parenting issues www.ec-online.net
and www.alzoc.org. 


Dearest:  Sandy, you say in "Staying Connected While Letting Go," that "it is important
to seek a diagnosis if warning signs are present. One of the reasons is that some forms
of dementia can be treated. Never assume that because your loved one is having these 
symptoms, he or she has Alzheimer's Disease." Sandy, what are the differences between 
dementia and Alzheimer's? 


Sandy Braff:  Good question!  Alzheimer's is a common form and cause of 
dementia.  Dementia is a description of symptoms and behavior and it is not a disease. 
Alzheimer's is a disease. 

Some of the symptoms of dementia are: loss of cognitive or intellectual function, loss
of social abilities, personality changes, memory loss, difficulty with abstract thinking, 
verbal skills, loss of judgement and there are more. 

Alzheimer's a progressive, degenerative disease. It starts with some of the dementia 
symptoms but eventually becomes more severe and irreversible mental impairment that 
interferes with the person's ability to take care of themselves and to talk or feed 
themselves. 


Dearest:  Is Alzheimer's hereditary? 


Sandy Braff:  It is believed that there is a hereditary component.  There
is some genetic component where the person has Alzheimer's that other family members
will inherit the gene but it is not 100% certain. I don't want to scare anyone because 
there's a good chance that family members may not inherit Alzheimer's.  In what they
call familial Alzheimer's, which is an early onset form - before age 65, it is caused
by genes on chromosomes 1, 14 and 21. 

It's not certain. They're doing a lot of research and testing to understand more about
the role that genetics play.  If people want to learn more about the genetics, there are 
some sites (and buy the book first).  Email for more information at adear@alzheimers.org.  
Websites for information are www.alzheimers.org or www.nsgc.org. 


Dearest:  You say some forms of dementia can be treated. What type of treatments are 
available for dementia? 


Sandy Braff:  It depends on what's causing the dementia.  Ginkgo biloba is 
being tested and in some cases with very high doses it has helped.  It can be cured if it 
is caused by delirium, depression, thyroid problems or if someone is having problems 
because of medications, high blood pressure.  There are well over 100 causes of dementia, 
and they are all treatable if caught in time.  Vitamin B12 can also cause dementia.  Even 
disorders of the thyroid or pancreas. 


Dearest:  We're pleased to have Sandy's co-author in the room, Mary Rose Olenik. Mary 
Rose, we'd be most grateful if you'd like to share any comments about your book and 
Alzheimer's and dementia.


Mary Rose Olenik:  Only to say to caregivers that your questions truly confirm the 
dilemmas, complexity, and angst surrounding your role but, Sandy and I can attest to the 
fact that you can and will survive. We have seen it again and again and so admire your 
courage, creativity and compassion shown to your loved one. 


Dearest:  It's very painful watching a parent lose their memory, become disoriented, 
especially someone who's always been so savvy and sharp. In my mother's case, I can see 
her frustration, but try to diminish her concerns, use humor in appropriate circumstances 
and tell her that everything will be okay. Can you recommend specific strategies for 
easing the fears of a person with dementia or Alzheimer's? 


Sandy Braff:  Good question! I want to promote my book again, and recommend 
another one which is called Speaking Our Mind by Lisa Snyder because her book is beautiful 
and helps you understand what the patient is feeling. She is the first person to have run 
support groups for people with dementia and Alzheimer's. It is a very good book. 

In communications with your mother who is anxious, continue to reassure her that you will 
be there.  Validate her questions and concerns and, if necessary, as she's becoming 
distressed or agitated, you need to distract her.  Remember, since she can't reason and 
isn't always rational, it won't help to force the truth on her. You have to get into her 
world. And we have some great examples in the book of how people have done that.


JaneS:  Are there possible environmental factors?


Sandy Braff:  Jane, that's one of the areas that's been explored. As far
as I know, there's nothing that they would say is 100% definitive. At one point there
was the thought that aluminum caused this brain disease but that is questionable. I
want to stress that it is not thought to be the cause. 


Guest198:  Does your book go into treatments for dementia? I'm kind of afraid to read
the book -- I don't know if I'm ready for the "letting go" part.


Sandy Braff:  I'm not telling people to let go, really.  What we're 
attempting in the book is to help people adapt to the emotional effects experienced of 
being a caregiver to a loved one with one of these diseases.  Letting go will not occur 
until you are ready and we explain very clearly and carefully in the book that this is a 
process that occurs on an an individual timeline.  I want to stress that letting go does 
not mean no longer loving.  Letting go actually brings you closer with more love and 
acceptance.  You feel more competent and more resilient when you get to that point. 

It's because you have overcome denial and are ready to face the reality, because you
know that internally you are feeling strong and able to handle whatever it is that you 
need to do.  As Mary Rose said, you are more resilient than you believe you are. 


Guest198:  Oh, I think I'm at that point now! I see. Really, that it is inspiring, not 
fearful! 


Dearest:  Guest, I wouldn't be afraid to read the book. I'm reading it now and have 
learned SO much that's helping me in coping with my mother's situation. 

Sandy, thank you for that exemplary answer! 


Mary Rose Olenik:  If you are afraid once you have read some of the book than we have 
failed in our attempt to help you -- but when you're ready you might want to take it on 
slowly or use it as a reference. 


Dearest:  Thank you, Mary Rose. Excellent advice. I think the book is wonderful! 


Debrikkia:  I don't have a question, but Sandy, I'd just like to tell you that this chat 
has been so informative for me, and has truly touched my heart. I was the primary care-
giver (living with) my mom the last 6 months of her life, and realize through tonight's 
chat, that she was definitely in the throes of some sort of dementia, or Alzheimer's. I 
understand a lot more now, than I did just an hour and a half ago, and it has help put my 
mind at rest. Thank You! 


Sandy Braff:  Thank you so much for that. I've heard that from several 
people after they've lost their loved ones. 


Dearest:  That was a nice statement, Deb :) 


Sally:  Experiencing the loss of a parent is tough, regardless.  I've leafed through the book
to find the tenderness and compassion of Sandy and Mary Rose dealing with dozens of 
caregivers.  It provides incredible support.  Reading light material helps too.


Sandy Braff:  Wow. Thank you for that wonderful plug. I'm so glad that 
you've found some benefit from reading the book. 


Dearest:  What does one do when one doesn't want to take away the person's feeling of 
independence, but at the same time, knows that they can no longer do certain things on 
their own?


Sandy Braff:  You want to understand communications.  You need to discuss 
these issues with dignity and very gently because this is an emotionally-laden topic.
You need to think first about what you want to get from that discussion. An article in 
front of me right now asks if you're doing this FOR the older adult or WITH him or her. 
It's important to discuss with them. Use "I" carefully.  It's not all about what you want.
 

Dearest:  Thank you, Sandy. I think it's also very important to find "something" to occupy 
the mind, hands, creativity of someone in the early to mid stages of dementia. Case in 
point, my mother was an interior designer, antique collector, always made her own 
beautiful jewelry. Since this dementia set in, she's been idle. Not reading as she did. 
Just sitting too much.

I went out and bought her tons of beads - and she's been beading all the time, constantly 
busy - even has reminded me that she's too busy to chat because she's beading! I can't 
tell you how happy I am to have found something to keep her occupied and interested and 
alive again. 


Sandy Braff:  That's perfect. you need to be creative, keeping them occupied 
in whatever they will do.  It is important to keep them busy with whatever they will do 
and to also understand with early or mid-dementia cannot be spontaneous or initiate 
activity.  That is when it's good for them to be in daycare with others to help them. 


Dearest:  My uncle died of Alzheimer's. I watched him for 7 years go from a vital, 
successful man to almost a vegetable-like state. It was very hard, yet he seemed to
find solace in painting - simple painting with a brush and paper. Is that what you mean
by simple things to occupy them? 


Sandy Braff:  Yes, anything at all that they can do. Folding towels, sorting 
towels. No activities should be looked on as degrading. 


YoungOldMe:  Sandy said it - folding towels! And some weeding! Thanks Sandy, this reminded 
me of the little lady my Mom was at the end, who I loved as much as I had loved my real 
mother before the illness! 


Sandy Braff:  You need to have a pat on the back, because this is truly
a wonderful way to end the chat. That's the bottom line, loving your mother, and remain 
connected and let go. That's the goal of most of the people. That's the whole point of
the book. 


Dearest:  Wonderful information. Absolutely wonderful!  Mary Rose, would you like to make 
any closing comments before we end the chat? 


Mary Rose Olenik:  Only to say thanks for giving us this opportunity and to send positive 
wishes to the caregivers -- our heroes and heroines all! 


Dearest:  Thank you, Mary Rose. And Sandy, thank you for a stimulating and informative chat 
about caregiving, Alzheimer's and dementia. I recommend Sandy Braff and Mary Rose Olenik's 
book, "Staying Connected While Letting Go: The Paradox of Alzheimer's Caregiving."



 
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Dearest
aka Alice Stamm
Power Surge
Founder, Facilitator, Host


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