ALZ Well Tonight May 25, 2000

ALZ Well Tonight
Susan Grossman
9-10PM EST May 25, 2000

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[susan_alzwell] Hi Jan - have some trouble getting in like we did?

[susan_alzwell] I was just getting ready to post a few fragments form the emails I get and the Anger wall - you'd be amazed at how guilty everyone seems to feel. Interested in hearing some of these?

[Jan123] Very

[susan_alzwell] This "snippet" is from the anger wall

[susan_alzwell] . This is supposed to be our, my, turn I'm mad as hell. I have nurtured, supported scrimped sacrificed and now I want to be a little selfish. All I want is some time to myself, I like my private time, I need my private time. I feel guilty not wanting to do everything for him. I don't want to go for walks with him all the time, take him with me everywhere I go, plan time because everything is in slow motion. I did all this when we had small children and when our parents visit

[susan_alzwell] SO is this one

[susan_alzwell] The anger lingered in me for 3 days. The entire time I also was stricken with great guilt for even being angry, after all, my Granny is half not really my Granny. "forgive them they know not what they do". I pray and worry if and how I will cope and manage caring for her as the disease consumes more and more of her. I sometimes wish she would have a sudden and painless death before the AD takes her away completely so she (and I) do not have to suffer.

[susan_alzwell] I actually have pages of these, and they all show that we care so much that we suffer guilt over what we can't do, disregarding all we do

RichOBoyleECO> sue...do you think those kinds of "dark thoughts" are uncommon?

[susan_alzwell] No - I think they are the norm - we can see that no matter what we do. No matter how hard we try, this isn’t a winning situation for anyone.

RichOBoyleECO> I think you make a very good point: the guilt we feel is often for "not being able to do it all"

[susan_alzwell] here's another - we all feel this way you know - and it's actually OK

[susan_alzwell] I feel guilty because it creeps me out when she hugs me because to me she's more of a walking zombie than my mom.

[susan_alzwell] What do you think Jan?

[susan_alzwell] In the book "When Someone You Love Has a Mental Illness" by Rebecca Woolis, MFCC, There is a great section on guilt which I'm pasting below:

[Jan123] I feel better just reading that others have same thoughts as I have.

RichOBoyleECO> who are you caring for Jan?

[susan_alzwell] It's True - I found them comforting all the time - and it helps ease the guilt.

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RichOBoyleECO> Hello Avon, welcome

[avon] hi! all

[susan_alzwell] Here's another quote I want to share from the wall. It shows how just expressing your thoughts instead of holding them in with guilt helps ---I love my mother, but she makes me miserable. It is not a positive love. I do not light up when she comes into the room. It is more a guilt-love. I don't have to feel the guilt-torture of having fallen down on my duties to her. Dropping the ball, when she did so many things for me all my life. What I am being asked to do is just too

RichOBoyleECO> how does one go about confronting one's guilt and getting past it?

[susan_alzwell] There are some real great books out there whose sentiments helped me."The Alzheimer's Cope Book: The Complete Care Manual for Patients and Their Families" by R. E. Markin, Ph.D., a past director of the Alzheimer's Research Foundation In it he writes about: The Family Meeting to discuss the disease, and the elements of guilt, sorrow, anger and even loyalty that surface from the meeting. If you can get a meeting together that is...

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[Jan123] My mother is in a N/H in another state. I'm the only living child. She is in early stages of alzheimers. She wants to stay in area she has lived all her life but I feel so guilty that she is not living with me. I call her every day and visit every other month but I feel like I've abandoned her.

[susan_alzwell] Hi Mina -

[Mina] Hi all

RichOBoyleECO> Hi Mina, welcome and thanks for coming

[avon] would ,could you tell me a little about the last stages of AD I think my husband is in the last stage(7)

[avon] hi!mina

[Mina] hi avon been following your posts very hard for you of late

[susan_alzwell] In an article written by Tim Brennan, an Alz patient, he states on placing a loved one or in being unable to be the caregiver ... "Please, for the sake of your loved ones who suffer from Alzheimer's, let your heart be your guide. He goes on to say Many caregivers talk with me. Sometimes they express the shame or guilt they felt about placing their loved one in a day-care or nursing home environment. They often say they tried to do everything possible to keep their wife, husband.

[avon] yes very hard.

RichOBoyleECO> there is a point in the CG life cycle where a loved one needs round the clock professional attention or has outgrown the skills that you have.

[Mina] sometimes I think placement is best for both the LO has activities and people geared to their needs

[Mina] and the cg needs to be honest about their limitations

RichOBoyleECO> how can people distinguish between Guilt that is based on false assumptions about what they should be doing

[avon] that what my daughter want me to do put him in nursing home he can still feed himself and that‘s about it.

RichOBoyleECO> and Guilt based on actual inaction, misdeeds or ill-will?

[susan_alzwell] Nearly all relatives of people with mental illness feel guilty, at some point, about their relative's or their own situation. Although it may never completely disappear, the feeling can be significantly reduced.

[avon] I feel guilty because I don’t think he is ready for a nursing home.

[susan_alzwell] 1. Acknowledge and express your guilt with an understanding listener. 2. Examine the beliefs underlying your guilt. (For example: "I should have done things differently when he was a child"; "I should have noticed the signs sooner and done something to prevent it"; "I should never have said that to her." 3. Counteract these false beliefs, using the information you have learned about the causes and course of mental illness. 4. Try not to dwell on the past. 5. Focus on how

[Mina] I read a quote by Martha Washington ..."The greater part of our happiness or misery depends on our dispositions, and not our circumstances."

[susan_alzwell] Mina - That is so true!

[Mina] is it not possible that some folk are just prone to feel guilty no matter what?

[Jan123] Good quote.

[Mina] I certainly have my fair share of guilt heaped upon me just for having created a CG! <G>

[avon] I'm one of those person

[susan_alzwell] It's also amazing how getting together with others who feel this way and listening to professionals explain ways to deal with it really helps.

RichOBoyleECO> Sue, your comments were cut off with item #5

[susan_alzwell] Many Alzheimer's Aid societies, and Senior centers feature speakers who talk on these issues. Call your local center and have them send you their schedules of speakers. and look for ones like: DEALING WITH DEATH GUILT, CAREGIVERS and GUILT, etc. - I attended one locally and was really helped.

[susan_alzwell] Sorry - 5. Focus on how you may improve the present and the future for yourself and your ill relative. You deserve a good life even if your relative may not be fortunate enough to have one.

[Mina] that's a very good suggestion - just giving it validity helps sometimes in understanding and forgiving yourself

RichOBoyleECO> item 5 is very important --

RichOBoyleECO> CGs shouldn't punish themselves in the face of the disease

[avon] the nearest center is over 50 miles away for me and no one wants to baby sit ad

RichOBoyleECO> avon...have you attended many online support groups?

[Mina] can you bring him with you? many offer on site respite

[avon] on caregiver egroup

susan_alzwell] That makes it difficult but not impossible. A lot of the centers realize that we can't get away and make arrangements for professional watchers for your loved one who do activities with them while you're in the talk.

RichOBoyleECO> avon -- there are several good real-time chat groups in addition to the email lists

RichOBoyleECO> i suggest that you look into Bubblehead's chatroom and the candid-dementia group

RichOBoyleECO> they meet on Mondays and Tuesdays

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RichOBoyleECO> Hi Carolyn, welcome

[avon] well the army is helping me out a lot they are a great group

RichOBoyleECO> I hope to upgrade the chat software in a few months -- hope :)

[avon] good to see you did it

[Ladydove] susan are you there

[Mina] Hi Carolyn!

[Ladydove] Hi avon

[Ladydove] hi mina

[Ladydove] hi rich

[Ladydove] ok lets hear what I missed

[Ladydove] hi jan123

[Mina] avon, you might want to look at other on-line support groups, each has it's own personality and level of professional advice

[susan_alzwell] Early we were talking about the guilt that can be associated with placing a loved one - sometimes the caregiver can't let go even when the situation suggests such a choice.

[Ladydove] yes I have felt guilty for sure

[Mina] or emotional support ...sometimes, if your lucky, both!

[Ladydove] I'm doing better at times

[avon] carolyn, I haven't heard from you for a few days are you doing ok?

[susan_alzwell] The book "When Love Gets Tough" - by Doug Manning talks about "Love Is Doing What People Need-Not What They Want" and states that. . . "I have gone through some rather drastic changes in my thinking. I am not alone in this change. Most of us never intended to place our parents in a nursing home. Most of us have made statements similar to mine, only to be forced to face the unreality of our boast. It is not an easy change to make. It is never made without guilt and fear. "

[susan_alzwell] she watched one woman try to do it all, getting an outside night job even and states "I watched the effect of this plan over a period of four years. The wife did not have to face the guilt of placing her mother in a home, but the cost of avoiding this guilt was giving up her whole life. She thought she was doing all this for her mother. In reality she did it for herself. She desperately tried to avoid the guilt of a hard decision." What a tricky world of guilt we live in!!

[Ladydove] yes I'm fine you know all the stuff I have been going through working on it

[Mina] very true, I think the bottom line is the decision ahas to be made with the head, so often our heart blurs and obscures the reality of the situation

[Ladydove] I was like that but know now I have make the right decision

[avon] That’s good to hear!

[avon] your head tells you one thing and your heart tells you something else

RichOBoyleECO> Had any of you made promises to your loved one "never to place them in a NH"...and then had to break that promise?

[susan_alzwell] We also get so used to doing what we think best for our loved one that sometimes we can't llooked past our own views on what's best. We don't see always when we're no longer enough, and then feel guilty because we're not superhuman.

[Ladydove] susan have you see the article I have in the "Today's Caregivers" magazine

[Mina] so often I hear that the last person taken into consideration is the LO ... society has us so concerned about what everyone else will think, children, siblings, community, church

[Ladydove] I got a lot of flack about placing Chuck but I did the best I could and it wasn't enough

[avon] that is very true Carolyn

[susan_alzwell] Oh yes - my husband made that promise - for us the decision was taken out of our hands and the Dr. placed her directly from the hospital for the last months of her life, She needed around the care real nurses and I hadn’t realized that she needed more than I could humanly do at the end.

[Ladydove] The way it worked God had prepared a way and it was taken out of my hands

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[Mina] but YOU know Carolyn ... and time has proved your decision to be best

[Ladydove] Yes he is happy and get good care I'm the one that is lonely and cries

RichOBoyleECO> Hi SusXmas...welcome

RichOBoyleECO> oh Carolyn :(

[Ladydove] hi SusXmas

[avon] hi! SUSXMAS

[susan_alzwell] Another book – "Caring For Yourself While Caring for Your Aging Parents: How to Help, How to Survive," By: Claire Berman talks about guilt including "The inability to resolve these problems can leave the children feeling frustrated . . . helpless . . . guilt-ridden . . .responsible.

[SusXmas] Hi How is everyone

[Ladydove] I think people put more guilt on you

[Ladydove] too

[susan_alzwell] One person wrote on the anger wall that...the shadow of guilt passes over me, I keep wondering, "Should I have?" "If I really loved her, should I have?" As many of you all know, It's not easy by any means to leave a loved one in a nursing home for any reason especially with no hope of them ever returning home. Yet sometimes it's the best. I keep telling myself so..."

RichOBoyleECO> it must be so hard when the CG responsibilities all seem to land on just one person...everyone is looking for you to carry the ball

[avon] JIM AND I TALKED ABOUT A NH THE OTHER DAY AND HE SAID HE WOULD JUST SO I COULD GET some rest sorry about that..

[susan_alzwell] And when you do finally agree to placement or even daycare, you feel guilty about going somewhere without them and feeling good about being without them a moment!!

RichOBoyleECO> avon...are there other ways for you to get some rest?

[Ladydove] The guilt I had is I needed the rest and he went in for respite care and I never brought him home at the time it was just so that I could get rest so I do feel guilty about that.

[susan_alzwell] Sorry all - but I need to sign off, please keep the conversations going - it really does help!

[Ladydove] had no intention of placing him

RichOBoyleECO> thank you so much Susan

[avon] yes dig my self a hole!

[Ladydove] by susan love ya

RichOBoyleECO> ladydove...everyone needs rest

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[Jan123] Susan, Thank you very much.

[avon] by susun

[Ladydove] avon you will make it if I can do it you can I was the big baby and depended on him so.

RichOBoyleECO> if a CG doesn’t get necessary rest and respite -- BEFORE it's too late

RichOBoyleECO> then everyone suffers from it

[Ladydove] are we closing now too

[Mina] I have asked to be placed, to be given (forced if need be should my mind frame be objective) the opportunity for day care where there will be appropriate stimuli and safety that my husband can't afford here

[avon] yes that true I have found my self getting ell sounding with him and then I feel guilty as h

RichOBoyleECO> let's keep the discussion going for as long as you like...I am not as good as Susan, so you all will have to keep it rolling :)

[Ladydove] ok I thought you were closing down.

[Mina] sitting watching TV although quiet and safe in the corner will only further along the diseases progression

[Ladydove] Chuck is at the stage he can 't walk very good

RichOBoyleECO> how have each of you confronted your guilt, or has it been a painful battle every step of the way?

[Mina] Carolyn I'm sure you felt just as guilty yelling and losing your temper with your children, goes with the who you are

[avon] but we can't seem to do what really needs to be done it hurts to bad!

[Ladydove] I am working through mine by helping other people and keeping busy when I see how happy he is I know I have to move on with my life

RichOBoyleECO> that is a great reward Carolyn...and so many people are benefiting from your advocacy

[Ladydove] I'm learning to separate the two his life is consuming me and I won't let it.

RichOBoyleECO> we all hope that new diagnoses will not have to live with the shame, guilt, ignorance and hopelessness so many have already experienced

[Ladydove] Alzheimer's took my life from me won't let it take my life

[avon] yes carolyn you have put a smile on my face many times

[Mina] GREAT quote Carolyn

[Ladydove] you are pretty wonderful yourself we appreciate you all

[Ladydove] mina how are you doing dear friend

[Mina] good, thank you -- better with support that continues from you all!

[Ladydove] Have any of you see the article in the Today's Caregivers Magazine getting a lot of good reply's

[Jan123] I must sign off now. Good night and God Bless each of you.

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RichOBoyleECO> goodnight Jan

[Ladydove] nite jan

[Ladydove] nite susxmas

[avon] talking about taking your life I feel that I would have no life with out Jim is that fare of me

RichOBoyleECO> I didn't see the article in Today's Caregiver...

[avon] bye Jan

[Ladydove] Avon believe me I have been there I know how you feel I felt the same way

[avon] nite susxmas

[Ladydove] I wanted to die never dream I could stay by my self he was my life

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[Ladydove] I was only 18 and married for 47 years we went every where together you seen one you see the other now I'm alone but I have learned to adjust

[avon] yes but I feel like I won’t want to wake up tomorrow with out him

[Ladydove] yes that is normal but believe me I have cried but got the support I needed from Dorothy it help save my life

[Mina] yes, we as women in general tend to do that -- give ourselves up in the early years to our children and husbands needs and loose our own identity become only wives, mothers have no idea of what we want or need for ourselves

[avon] I have never been the type to live alone raised 4 kids alone.

[Ladydove] She was preparing me I was where you are at I went around the bend I started to write a book had the title and didn't understand it at the time

[avon] who dorothy send her my way ok

RichOBoyleECO> Dorothy Womack?

[Ladydove] She is on this site right Rich

[Ladydove] Yes my dear friend

RichOBoyleECO> that’s right...avon, just look at the caregiver support network on this site (from the front page)

RichOBoyleECO> she is so sweet...has been through it all and brings such wisdom and compassion

[avon] God bless her I need her help too

[Ladydove] She is wonderful and full of hope and love and compassion

[Ladydove] She will help you I still keep in touch with her

RichOBoyleECO> she has written a piece on CG guilt (as well as a dozen other very good articles)

RichOBoyleECO> she also writes poetry extensively

[Ladydove] Yes, yes, yes and writes beautiful poetry

[avon] it seen that we are all in a glass tub and turning and turning and it wont quit

[avon] I read about every one else and I see my self and its hard I set and cry for all of you and my self

[Ladydove] Avon believe me I know where you are at the Title of my book is "Is there Life After Alzheimer's remember I got this at the beginning and didn't understand it or feel there was any life

[Mina] thank you for letting me join in your chat, thank you for being the angels on earth that care for the demented, no easy task. You are appreciated, you are loved in return... the heart always remembers. try to keep your hearts intact

[avon] there life but what kind ?

[Mina] g'night :)

[Ladydove] But I want you to know there is Life After Alzheimer's

[avon] nite mina

[Ladydove] A good life you will see trust the Lord he will make a way for you. You are helping people already and you don't realize it

RichOBoyleECO> goodnight Mina

[avon] thak you for help

[Ladydove] nite mina don't stay away to long love ya

[Ladydove] avon how long have you been married

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RichOBoyleECO> we will be having a chat next wednesday May 30

[Ladydove] ok good who will be here?

[avon] but carolyn aren't there times that you are the only one?

[Ladydove] Yes like right now I'm alone all day

RichOBoyleECO> it will be me and anyone else who comes by...it is intended for new caregivers...but experienced CGs are welcome to share their wisdom

[avon] 18 years thire husband

[Ladydove] I have lived with this man 47 years my whole life and he is gone and don't know me

[avon] thanks but I feel I still have a long way to go

[Ladydove] Yes I had a lot of guilt but I had to release it and let it on. So that I could survive

[Ladydove] You will make it and one day will tell me about it.

RichOBoyleECO> that is beautiful...thank you ladydove

RichOBoyleECO> for sharing that

[avon] i know you are right but we don't always want right

RichOBoyleECO> avon...there is a email group called Innerquest that Dorothy hosts

[Ladydove] I can't believe I have come this far when Dorothy use to tell me I didn't understand it takes time

RichOBoyleECO> I encourage you to sign up for it...it is not as busy as some of the others, but it still has a lot of beautiful inspiration

[avon] yes but time runs out

[Ladydove] Remember Time heals the hurt and you see the sun shining in your heart one day

[avon] I hope god lets me live that long any .

[Ladydove] I don't care how long it takes you will tell me one day for sure believe me

[Ladydove] how old are you avon I'm 65

[avon] all I ask of him is to help me see Jim go then I will be ready

[Ladydove] I know you are a survivor remember the snakes

[avon] snick snake under the pillow

[avon] oh i'll be 55 july

[Ladydove] How long has Jim had Alzheimers

[avon] hon just be there we I'm like I am feeling at this point thank you

[avon] going on ten years

[Ladydove] I will be and there are a lot of others to help you. Go to Dorothy site and visit this one but remember we need you to

[avon] you know all week I was worried that I would miss tonight I'm glad I didn't

[Ladydove] Avon I'm always an e-mail away and today posted my phone number to the list if any one needs me

RichOBoyleECO> are you on the newsletter mailing list? It includes announcements about new articles by Dorothy and other writers

[avon] no but I will check it out

[Ladydove] Hey I tried for a long time went to bed my daughter called and I thought I will try again and I made it so glad I did

[Ladydove] ARe you all ready to close down Rich

[avon] i'm glad you did too

RichOBoyleECO> yeah...I have to get some shut eye...

RichOBoyleECO> I want you two to stay here as long as you need to

[Ladydove] See the Lord knew I needed to be here Susan is wonderful

RichOBoyleECO> Carolyn...you are doing so much...bless you

[Ladydove] We are not super women and one day will have to face up to it.

RichOBoyleECO> I hope that this helps just one person.

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