Chat Transcript: Grief and Caregiving 10/15/01


In collaboration with the Alzheimer Research Forum, ElderCare Online hosted a live chat with Dr. Tom Meuser of Washington University, St. Louis. Dr. Meuser is an authority on the psychosocial effects of providing care for Alzheimer patients. The chat was presented on Monday, October 15 from 12noon to 1PM EST.

RichOBoyle
let's just hang out a few and wait for some people to roll in

Bubblehead
Tom I am so glad I was able to make it here to see you in person

Bubblehead
Well I saw the notice on the list so I am sure some may try to come

TomM
We'll work with what we get. Let me start by listing my research page: alzheimer.wustl.edu/adrc2/cgstudy.htm

marilynsmorris
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RichOBoyle
hello Marylin Morris and welcome

mickie
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RichOBoyle
we are just getting settled in here. so please hold for a few minutes

RichOBoyle
Hello Mickie and welcome

TomM
Welcome Marilyn and Mickie

Sugarlips
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Barbsfrmokc
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RichOBoyle
Hello Sugarlips and welcome. Great to see you

RichOBoyle
Hello Barb. Welcome

Sugarlips
Hi Rich

TomM
I have a question for everyone. From you experience, what are the key emotions associated with grief?

Sugarlips
Hello everyone

Barbsfrmokc
Hi Rich

Sugarlips
Sadness

mickie
sadness, anger, frustration, guilt

Barbsfrmokc
All of the above plus an oppressive heaviness of heart.

Sugarlips
I agree, Barb

Barbsfrmokc
Almost a physical feeling of being weighted down.

Trisha
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TomM
Sadness has a number of different connotations. People feel sad over different aspects of a loss, for example. In terms of AD caregivers, how might sadness be defined?

mickie
sadness at the loss of the relationship, the loss of the person you knew

Barbsfrmokc
Mine was a combination of numbness alternating with pain of loss.

Nico
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RichOBoyle
hello Nico and welcome

Trisha
I am wondering if anyone has had experience with daycare for their loved one who suffers from mid stage demention

Nico
Hi Richard. Thank you.

TomM
Did anyone feel sadness over losses in your own indivdiual life?

Barbsfrmokc
Yes, many times.

TomM
Individual life while caregiving, that is.

Loretta404
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Barbsfrmokc
Do you mean other times in your life? Or just pertaining to the caregiving situation?

Barbsfrmokc
lol

TomM
During the period of caregiving.

RichOBoyle
hello LOretta and welcome

Loretta404
Hi how are you?

Sugarlips
I felt the loss of my Mom as a person while caring for her.

RichOBoyle
we have just gotten started.... Tom is opeing the discussion up with some questions about your personal experiences

micki
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Sugarlips
She was with me in body but not in mind.

Barbsfrmokc
Some but I did not allow myself to dwell on this as my main concern was Mother. The worst were the small sometimes daily losses of who she was.

TomM
One of the key findings from my Caregiver Grief Study had to do with focus of loss (i.e., the aspect of loss driving the sadness and other emotions). Adult-child caregivers reported self-focused loss (what I have had to give up) through the middle stages of dementia progression, but this changed once NH placement had occurred. There was a shift at that point to other-focused loss (what my parent has had to endure). Does this fit with others' experience.

Sugarlips
Yes, it does.

TomM
Rich - folks can ask me questions at any time. I just thought I'd get the ball rolling to start. Fire away!

micki
the most sadness for me has been thinking about what kind of life my father has had to lead. From a vital active, brilliant individual to a person who cannot communicate and needs constant care.

Barbsfrmokc
I think I went through that before making the final decision to move across country, give up my job etc. By the time I actually did it I was reconciled to my decision. Then since I was a home caregiver 24/7 I did not deal with placement issues but watching my mother disappear was very difficult.

micki
My pain comes mostly from thinking about how terrible his life is.

Sugarlips
I miss Mom as a person. She was my best friend.

RichOBoyle
For asking questions.... please "line up" by sending me a private message (double click on my name) and i will put you in line... this keep things going smoothly.

TomM
Even in all this loss, can there still be "new" aspects of your relationship?

Barbsfrmokc
I definitely had this kind of magical thinking of - I had to be the guardian of her dignity. If that makes any sense.

Barbsfrmokc
Well, we had not had so much one on one time together in many years since I had moved to CA and each smile or hug was special as she was not a very demonstrative person as far as affection went when I was a child. But we always had a good adult relationship.

Sugarlips
I can relate to that Barb.

RichOBoyle
Sugarlipslips you are first with your question... please present it to Tom now

RichOBoyle
and then Trisha and Bubblehead

TomM
Good question - I wish there was a one-size-fits-all answer. The key to offering good grief support is to listen much more than speak. You also should appear comfortable with the fact of death. By naming it for what it is you build credibility as a true support.

TomM
Discussing the past, good or bad, can also be helpful to someone who is grieving. Grief is simply the adjustment process to loss. Making peace with the past is part of this.

Barbsfrmokc
That's good advice. When my daughter died everyone was afraid to say anything and so I would bring up the good times and tell them that if they ignore her it's as if she never lived so I wanted them to be able to talk to me.

micki
I would like to suggest that a good way to help is to try to give the person some respite if needed--either stay with the parent or take your friend out for a break.

TomM
Grief may also include fear of the future. This is particularly true for someone losing a spouse. How will I go on alone? What will happen to me? These are big questions that beg for honest dialogue even if answers are not forthcoming.

RichOBoyle
Trisha you are next in line with your question/comment

zippy95
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TomM
In terms of focus of loss, our study showed an opposite pattern for spousal caregivers. They start with other-focused grief, but end with self-focused grief.

TomM
Shall I pose a question?

Sugarlips
Did you determine why it was so different?

Bubblehead
Hello zippy

RichOBoyle
Hello zippy and welcome

zippy95
Howdy

TomM
The shift in emphasis - spouse vs. adult child - has to do in part with the developmental demands of each life stage. Adult Children caregivers grieve what they are giving up because their lives are being turned upside down. This turning upside down does not happen for spouses untile after NH placement..

Sugarlips
So your saying spousal caregivers don't have their life turned upside down?

Barbsfrmokc
It makes sense. If you are not living with the loved one you have to go through a process of focusing on yourself in order to give up certain areas of your life - then you become focused on the loved one as you make this move into their life totally. If you are a spouse you are living in the moment with the grief of the news and need time to adjust and absorb this focus on your loved one immediately and then feel the pain of your own loss

JACGordon
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RichOBoyle
Hello JAC an dwelcome

TomM
Yes - in a way I am. Spouses expect to be with each other, caring for each other, in the latter years of life. The shift to being a caregiver of a demented spouse is much different than it is for an Adult-Child.

RichOBoyle
we are discussing the differences between the way spouses grieve and the way adult children grieve

JACGordon
thanks :)

TomM
Another difference has to do with the expression of anger. Anger is a key issue in grief that is often tied with guilt. Adult-child caregivers in our research openly acknowledged anger at many aspects of the disease, including anger at the person with dementia. Our spousal caregivers denied that anger was even present.

Sugarlips
That is amazing.

Barbsfrmokc
Hmmm. That's interesting. I never thought of that.

Sugarlips
I was was VERY angry at the disease. Why MY Mom?

Barbsfrmokc
Me too Sugarlips

TomM
Anger is an uncomfortable emotion for many of us, myself included. Yet the ironic thing is that dealing with anger is an important component in the healing process for people duirng bereavement. Anger that is not acknowledged can fuel depression over time.

Bubblehead
As a spouse you are not suppose to get angry just lovingly care for with compassion and love

Sugarlips
Expressing anger is not socially acceptable.

RichOBoyle
We have an Anger Wall on the ALZwell website where people post some often explicit comments. Is this kind of "venting" helpful?

Sugarlips
Any hints on how to do this?

Barbsfrmokc
It's funny because I've always had trouble dealing with anger but was feeling VERY angry at the disease but that enabled me to be totally angry at the disease and yet very compassionate toward my mother.

TomM
Not necessarily. We found that spousal caregivers have anger, but they don't express it as intensely as their adult-child counterparts.

TomM
This difference in anger really stood out in our interviews with each type of caregiver.

RichOBoyle
All attendees: if you want to join the conversation, feel free to. If you have a specific question, then please private message me and you can step in line to pose it next

Sugarlips
Are they more controlled in their feelings?

Bubblehead
or is it that they are more experienced in burying their feelings?

TomM
We are speaking in generalities here - we're all different in some ways. I think what fuels anger is different for each type of caregiver. There's more fuel for the fire in the average adult-child because being thrust into a caregiving role can be dramatically llife changing.

Sugarlips
I would agree with that.

TomM
Any different questions?

RichOBoyle
Trisha, do you still have a question? Bublehead?

zippy95
Mom is stage 3 ALZ and i find myself crying iver the darndest things..

Bubblehead
I am real interested in your study. Is it still going on and what are some of the effects of long term grief in CGs.?

zippy95
I heard this song ..... say the things you used to say and make the world go away ..... and she just can't say much of anything

Trisha
was asking about day care for my Mother in order to give my Dad a break, but, do not want to elevate her illness........thought maybe (1) or (2) days a week

TomM
My study was just funded by the Alzheimers' Association to continue for another 2 years. We are just getting ready to publish a questionnaire designed to measure caregiver grief - MM Caregiver Grief Inventory. My research page includes a copy for review: alzheimer.wustl.edu/adrc2/cgstudy.htm

TomM
Respite helps with all aspects of the emotional distress of caregiving. 2 days sounds great.

Barbsfrmokc
Is it usual to feel that you have grieved for so long that you can feel only relief (coupled with sadness) for your loved one at the release from the hell they were in for so long. This existing in the state of non-existance.

Trisha
I am concerned about her being with others whose condition may be worse & if this would upset her

JACGordon
Trisha My Mom (stage 6) goes three days a week to adult care. At times she has become very withdrawn and at other times been very social. Overall, I think it's good for both of us.

TomM
Good question Barb. In our study, at least, there was an interesting pattern of expectation between active and former caregivers. The active caregivers (at least the adult-children) predicted they would feel relief at the point of bodily death. The spouse caregivers also predicted they would but to a slightly lesser degree. Both were wrong. Our former caregiver interviewees discussed how they grieve more now than before. The expectation of relief was not there.

RichOBoyle
let's hold off on new questions so that Tom can respond to these and we can also respond.

Bubblehead
I did not realize you were studing former CGs Tom

Trisha
Thank you for your input ........I have been very concerned about the decision of daycare & my Father leaves all of those decisions to me

Bubblehead
Trish you can tell her she is going there to help with the others

TomM
Social stimulation is important for persons with AD, even in the latter stages. If getting out to a daycare allows for positive activity, that's great. Som programs stimulate more than others.

Bubblehead
Sometimes that helps a great deal.

TomM
My Caregiver Grief Study included former caregivers in 2000. Between 2001-2003 we are shifting emphasis to grief as expressed between married partners where one has early-mild AD.

Trisha
I have thought about telling her she is going to visit with other ladies & to have some social time.......guess I should visit the Daycare Center to see exactly what it is about, just was wondering about others experiences

JACGordon
I think she will enjoy it... if not initially, after giving it a week or two

zippy95
are all of you in england?? i am in usa..

Trisha
I was thinking I could stay with her a while the first couple of times

JACGordon
I did, trish

JACGordon
I wanted to see what went on

Bubblehead
We are from the USA zippy

zippy95
main problem with ALZ is loss of ability to learn !!!

Trisha
Thank you so very much, you have helped me with a difficult decision

TomM
Trisha - people with dementia have trouble making a shift to a new environment. Staying with her is a good idea, I think. Be warned that she may be quite upset and confused at first.

Bubblehead
That is one of the many, many losses you will be experiencing zippy

TomM
There's a researcher at the Menorah Park Center for Aging in Cleveland, Dr. Cameron Camp, who has found that people with severe AD can still learn some tasks. I

zippy95
MOM

Trisha
I know it could be hard for her for the first few times, but, hope in the long run it will help, she only sits & watches TV all day now, no stimulation

TomM
Other questions?

Sugarlips
Dr. is it helpful or harmful to continue with support groups after your caregiving days are over? Also what topics should support groups cover for "after carers?"

Trisha
Thank you everybody

TomM
Another big question! The answer about attendance really is up to the individual. Does it feel right? Many former caregivers like to remain involved so thay can share their experiences to help others.

Bubblehead
Come back again zippy

RichOBoyle
thanks for coming Zippy and please come back again

Barbsfrmokc
In my case, I stayed for a few months then left but lately have felt the need to return to a "safe haven" as my Dad thought not AD is in failing health and I'm feeling the need for others to talk to who care for parents (with or without AD)

RichOBoyle
If we have time... Tom can you address the way that male CGs deal with grief compared to female CGs? I have heard that "women grieve and m,en replace." Any wisdom there?

Bubblehead
After Milly passed I found though that coming out of it was not as easy as I thought (like you had mentioned earlier). I found myself withdrawing even more and it took great effort to get back out into the "other" woprld

Nico
(interesting thought, rich)

Barbsfrmokc
That's true, Bubblehead

RichOBoyle
What types of things can help a CG reenter the "Real World"?

TomM
Sure, Rich. This view is too simplistic. Women do, in fact, acknowledge greater emotional distress than do men. I'm reminded of one man we interviewed - Bill a 73 year old caregiver of his wife with moderate AD. Bill was more angry about his situation than anything else. "I love my wife but this situation is just intolerabe - I wish God would take her." Bill discussed feeling the loss of intimacy and sharing as most significant for him. I think men often do "replace" but this behavior is not out of callous disregard for their spouses. It is instead a way of positive coping.

TomM
Never to have left it. I think the most successful caregivers are those that can keep elements of their own individual life des[pite the burdens of care.

RichOBoyle
yes Tom, not judgemental implications intended... we all have our ways of grieving

Barbsfrmokc2
That's hard to do when even family not to mention friends practice avoidance because they are so uncomfortable with the changes in the loved one. I found the internet a great outlet during this time.

Bubblehead
The best thing I did for myself IMHO is to get a job totally unrelated to caregiving and AD.

Bubblehead
However I do meet a fair number of CGs in my job at the grocery store

Barbsfrmokc
In after care I think finding interesting work is important if you can and new interests that you had thought about but not tried up to this point.

TomM
Great comments.

Bubblehead
Oddly enough one of my escapes while caring for Milly was to go to this very grocery store and straighten out shelves while I shopped

Barbsfrmokc
My mother was my inspiration in this area. She had a much more interesting retirement than her long working life. And I was so grateful that she was able to develop so many other interests later in life before this disease struck her down.

Barbsfrmokc
My grandchildren have been a great release for me.

TomM
The coping literature emphasizes the importance of balance between emotion-focused strategies and instrumental/task oriented strategies. Bubblehead's straightening the shelves is among the latter. Both are important

Barbsfrmokc
I took up the torch on mother's extensive genealogy research and it can be totally absorbing.

Bubblehead
OK I really did not sing while I straightened the shelves so the correction makes sense

Barbsfrmokc
lol

TomM
What's our status on time, Rich?

RichOBoyle
we can run as long as you like, but we are only scheduled for NOW...

RichOBoyle
Tom, can you just reply to any outstanding questions? Or if you could stay on it would be great. We can hang out and continue these conversations informally

Bubblehead
This room stayes open 24/7

TomM
Thanks EA - I actually have to go now. Thanks to everyone for being here. I've enjoyed this my first chat experience!

Nico
Thanks, Tom!

RichOBoyle
Thank you Tom. You have been very generous with your time

JACGordon
thanks for coming

Barbsfrmokc
Thank you so much for taking time to be with us.

Nico
You were great!!!

TomM
Thanks everyone - bye!

Bubblehead
Tom it was great meeting you

Barbsfrmokc
Bye

Bubblehead
That was a pleasent treat Rich having Tom over for lunch

RichOBoyle
maybe we can convince him to do this somewhat regularly

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