ElderCare Answers -- May 10, 2000

ElderCare Answers discussion group
Host Rich O'Boyle
May 10, 2000 9:00-11:00PM EST

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HOSTRichOBoyle> Hello LSC welcome to ElderCare Answers

HOSTRichOBoyle> are you with me?

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[lsc], I am new to alz caregiving. Mama has been diagnosed with early stage alz. I don't have any specific questions.

HOSTRichOBoyle> Hello ireduffy and welcome to ElderCare Answers

[ireduffy] Hi to all and thanks

HOSTRichOBoyle> that’s ok lsc...just chime in whenever you feel comfortable

HOSTRichOBoyle> how are you tonight ireduffy?

[ireduffy] Good, here thanks My Dad has alz and my Mom has finally decided to go to a support meeting

HOSTRichOBoyle> that should be a big help to her...

HOSTRichOBoyle> too many people wait for too long before finding respite or support

[lsc] I hope to attend my first support meeting next week.

[ireduffy] ahhh God I hope it is she is jumping out of her skin My Dad will not leave her for a moment...

HOSTRichOBoyle> caregivers (CGs) need to get away from the house occasionally

HOSTRichOBoyle> it is NOT selfish to take time for yourself

[ireduffy] That is a good move I know you can use it... Are you taking care of a spouse?

HOSTRichOBoyle> educating yourself and connecting with others is a great outlet and totally necessary

HOSTRichOBoyle> lsc is new to alz caregiving...her mother was recently diagnosed

HOSTRichOBoyle> i am not a caregiver right now

[ireduffy] Is is not at all... We are lucky here 3 girls all close by when my Ma goes we take my Dad but she has been feeling guilty leaving

HOSTRichOBoyle> too often the CG waits until it is too late to find assistance

[lsc] I want to learn all I can before thing get too bad.

HOSTRichOBoyle> lsc -- have you browsed through this website?

HOSTRichOBoyle> other good sites can be found in the Medical Research Assistant

[ireduffy] ISC I am pretty new to this and I got so overwhelmed and depressed at first take it easy on your self

HOSTRichOBoyle> your local alz assn is a great place to meet other CGs

[lsc] My husband passed away last July. He had an autoimmune condition with sever hallucinations and confusion

HOSTRichOBoyle> you're right ireduffy...take things step by step

[ireduffy] This is a great site and I thank you for having it...

HOSTRichOBoyle> thank you so much

[ireduffy] Isc any children?

HOSTRichOBoyle> sorry to hear that lsc

[lsc] I did not have any support with him. I did have family and friends but they didn't know any more about caring for him than I did.

HOSTRichOBoyle> there are different aspects of caregiving that you can have other people help with

[ireduffy] Isc ahhh just when you think things cant get any worse bang that’s how it hits for some reason

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HOSTRichOBoyle> for ewxample...some relatives can visit or write letters or visits and read to your mother

HOSTRichOBoyle> that will free you up a little

HOSTRichOBoyle> the hands on day to day stuff gets to be very challenging with Alz

[lsc] I want to be prepared this time. didn't have time then, he got sick so fast.

[lsc] Yes, he was totally dependent for about 7 months.

HOSTRichOBoyle> your brief experience with your husband has already made you much stronger and skilled

HOSTRichOBoyle> I know that some local hospitals offer classes for caregivers....

[lsc] I do have step-children. One of them was a great deal of help.

HOSTRichOBoyle> also the home care supply store "Homecare America" offers in store demonstrations for techniques and products

[lsc] Thanks, I'll check into classes.

HOSTRichOBoyle> please promise yourself that you will not be the only caregiver

HOSTRichOBoyle> yes, you have a certain responsibility to your mom....but you also have a responsibility to yourself

HOSTRichOBoyle> its a good idea to get legal & financial matters squared away now...

HOSTRichOBoyle> has your mom been informed of the diagnosis?

[lsc] I will be the primary CG; but, I many neighbor and friends who will help plus I will hire help later on.

HOSTRichOBoyle> you are definitely on the right track

HOSTRichOBoyle> are you plugged in to other support groups on the internet? newsgroups or discussion groups?

[lsc] Yes, she is the one who told me something was wrong. I understand this is unusual for the LO to be the one to know some thing is wrong before anyone else.

HOSTRichOBoyle> i suggest that you download the ElderCare Organizer and medical planner to help track personal information and medical appointments

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HOSTRichOBoyle> ..

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HOSTRichOBoyle> welcome back :)

[lsc] Type HEREI don't know what happened. It just disconnected.

HOSTRichOBoyle> that happens sometimes

HOSTRichOBoyle> just sign back on....

[lsc] At this point Mama forgets things and sometimes loses things. Sunday was the first time that I noticed a "personality" change.

HOSTRichOBoyle> what was that?

[lsc] She got very upset about something that normally would not have bothered her.

HOSTRichOBoyle> if her emotional balance and personality change drastically, her docs can prescribe meds for her

[lsc] While discussing the matter, she let loose with a lot of things that have been bothering her.

HOSTRichOBoyle> some of that is normal for people...this must be a very depressing time for her

[lsc] Idon't know whether she is distancing herself - trying to protect me - or it's the alz.

HOSTRichOBoyle> your relationship with your mom will be tested here...

[lsc] I know she worried about me and this huge change in my life. She , my husband and I were all very close.

HOSTRichOBoyle> it will always be crucial that you remember that it is the disease that makes her behave the way she does

HOSTRichOBoyle> now is a good time to bond even further...take the time to talk with her and ask her about her childhood and things like that...

HOSTRichOBoyle> does that make sense?

[lsc] We live in a very rural area (out in the woods), two house in the same "yard".

HOSTRichOBoyle> what state?

[lsc] We (the 3 of us) traveled alot in our motor home and She and I have done a little traveling the last few months. she now wants me to take some one else (who? she didn't say) This is why I think she is trying to "Prepare me ".

[lsc] Texas

[lsc] I think we should use this time to strengthen our relationship even more and she is pushing me away.

HOSTRichOBoyle> if you can talk with her frankly and tell her that you are comfortable....

HOSTRichOBoyle> i think she will respond

HOSTRichOBoyle> you only get one shot at life....

HOSTRichOBoyle> and so few families have good communication skills

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HOSTRichOBoyle> hi thumper...welcome to ElderCare Answers

[Thumpy1] good evening

[lsc] Oh, I've already beat the odds once. (one shot at life) Husband and I survived an airplane crash in 88. It amde us all view life diferently.

HOSTRichOBoyle> lsc and i have been discussing her mom's recent diagnosis

[Thumpy1] hello Rich

[Thumpy1] hello Isc

[lsc] hello Thumpy. Talked to you last week I think.

HOSTRichOBoyle> i am sure that puts things into persopective

[Thumpy1] yes, being faced with a life threatening event can put your whole outlook on life in a different level

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[Thumpy1] Isc, I am sorry, I am not sure if we have met or not

HOSTRichOBoyle> welcome back ireduffy

[IREDUFFY] Sorry I am having comp touble thanks

[Thumpy1] hello IREDUFFY

[lsc] Mama is still driving to the beauty shop and short trips to friends. She has not been lost -- what do I look for to decide to take the keys away.?

[lsc] Ireduffy - I got cut off awhile ago too. It may not be just you.

[IREDUFFY] Hello thumpy I know that name.,... nice to see you

[Thumpy1] most professionals suggest that the keys be taken away early after diagnosis, because with an impaired memory also comes a deficit with judgement

[IREDUFFY] ISC I never thought my Dad would give up the keys we had him retested and I think it was a relief to give up driving

HOSTRichOBoyle> i have posted an article on this site that deals with car keys in great detail

[IREDUFFY] ISC once he was diagnosed his dr sent something to the state.. they really made the decision

[Thumpy1] what state is that?

HOSTRichOBoyle> the doc's input is very important to have....

[IREDUFFY] Pennsylvania

[Thumpy1] i am thrilled that the doctor is taking such a pro-active stance

HOSTRichOBoyle> often helps your loved one see things clearly...impartial third party opinion

[lsc] She's not ready now, for sure. That was a big part of the problem we had Sunday.

[Thumpy1] true rich

HOSTRichOBoyle> what about cutting back on her usage of the car....

[IREDUFFY] so am I it sorta takes the blame of the family... he had to be retested and they decided he could not drive

[Thumpy1] it can be quite difficult for a LO to understand why they can no longer drive.... for it takes away the "freedom" that they have enjoyed for decades

[lsc] Already have. We live in a small community - very rural and every one knows us in about a 5 mile radius. She no longer goes in to "Town" by herself.

HOSTRichOBoyle> having a car is such a symbol of adulthood and freedom and a key point of reference for many people

HOSTRichOBoyle> especially men

[IREDUFFY] Yes Yes but I actually think my Dad became uncomfortable driving.. We are lucky he has been involved in his diagnoses and treatment from day one

[IREDUFFY] Ha Ha yes men without directions perfect!!!

HOSTRichOBoyle> lsc's mom has also been very proactive with her condition

[Thumpy1] the problem that I have with allowing a LO with a dementia still drive is what if a child darted out in front of the car...they might not be able to react (know what to do) in time, and you sitting beside them will not help

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[IREDUFFY] ISC that is great I have a Uncle they never told him.. it took so much away from them

[Thumpy1] even a car moving at 10 MPH can kill

HOSTRichOBoyle> Hello Mary...Welcome to ElderCare Answers

[Thumpy1] hello mary, and welcome

[lsc] Yes, I was in such a "state" with my husband's illness and death that I didn't realize anything was wrong with mother.

[IREDUFFY] Thumpy so true my Dad took off a door of someone getting out of the car...

[lsc] hello mary

[IREDUFFY] Hello Mary nice to see you

[Thumpy1] yikes, duffy

HOSTRichOBoyle> mary...we are discussing a recent AD diagnosis and restrictions on driving

[Mary55] Type HERE Hi everyone just listening to everyone

[IREDUFFY] Rich We now have to get my Moms finance in order....

[Thumpy1] also, in some states, if you allow an impaired person to drive and you are also in the vehicle, you can be held responsible

HOSTRichOBoyle> ireduffy...have you taken a look at the checklists and articles in the Legal & Financial Matters Channel?

[Thumpy1] mary, do not forget to occasionally type at least a dot, so that the room does not automatically boot you out

HOSTRichOBoyle> I am also working with a lawyer to write articles on Medicaid planning

HOSTRichOBoyle> yes mary.. type "...."

[lsc] Mama and I have briefly discussed power of atty. and guardianship Anything else?

HOSTRichOBoyle> or else you will get bumped out for iinactivity

[Thumpy1] I am going to a forum tomorrow on madicaid updates in Michigan

[IREDUFFY] Well I think the law in Penna once diagnosed that it has to be reported to MV is great

[Mary55] Thank you I forgot

HOSTRichOBoyle> make sure that she has a living will , last will & testament and health care proxy

[Thumpy1] durable power of attorney for healthcare is another needed document

[Mary55] This is very interesting

HOSTRichOBoyle> the health care proxy should specify preferences for tube feeding and artificial respiration/resusucitation

[IREDUFFY] Rich No not yet but I will My Mom has been very reluctant to take that step ... but now she may be getting ready

HOSTRichOBoyle> yes thumpy -- health care proxy and DPA (health) are the same

[IREDUFFY] She is going to a caregivers support meeting friday for the first time

HOSTRichOBoyle> it is very key to do this early...before dementia sets in full time

[Thumpy1] get all of her wishes down in writing now...it will make it so much easier on you later on when you are faced with decisions

[lsc] I am listed on all her accounts and was told that p of a would be better - to keep our finances separate.

HOSTRichOBoyle> if there is "a lot of money involved"...then you should speak with a lawyer for detailed planning

[Mary55] My Mom has alzheimers and it is hard to get to a support group so I thought I would see what you guy are doing on here

HOSTRichOBoyle> mary -- this is a "virtual support group."

[IREDUFFY] writting brb

HOSTRichOBoyle> we discuss many of the same issues and emotions people discuss in person

HOSTRichOBoyle> feel free to chime in our share your story

[lsc] Thank you for the advice about the lawyer.

[Thumpy1] your welcome

HOSTRichOBoyle> moving $ around and putting it in joint accounts has legal consequences

[IREDUFFY] Mary we are all just helping each other to cope and giving info... you are so welcome here we are your support group

HOSTRichOBoyle> especially if you need medicaid assistance later on

[Thumpy1] yes it does…Medicaid, for example, goes back 3-5 years and looks at all financial matters

[lsc] I wish I had known about these groups on the net when my husband was sick.

[IREDUFFY] rich ahhh but even if dont have nothing this disease is gonna take so much you gotta move some

HOSTRichOBoyle> i just suggest that you be careful about the consequences

[Thumpy1] I know what you mean Isc, I didn't get a computer until the final 6 months of Mom's battle

HOSTRichOBoyle> so much of the cost of care will come out of pocket....

[Thumpy1] we spent $4,600 a month for Mom's care

HOSTRichOBoyle> there are a handful of great groupos for AD...bubblehead's chatroom, candid dementia

HOSTRichOBoyle> wow thump...was that all in home?

[Thumpy1] candid is a nightly support room

[Thumpy1] that was in a NH

[Thumpy1] when I had to place her

[lsc] .

[Mary55] My Mom is in the advanced stages of the disease, its real tough. I care for my Mom about 6 hours a day to give my Dad a break. I have a daycare for children so it helps my Mom playing with the kids

[Thumpy1] Medicare didn't cover it....personal insurance wouldn't touch it, and she had too much money for Medicaid

[Thumpy1] mary, do you notice that Mom and Kids are often on the same level?

HOSTRichOBoyle> does your mom get along with the kids? i have heard that it is great therapy

[Mary55] My Mom is sometimes worse than the kids. She talks to the toys like they are real

[IREDUFFY] Well I am hoping my Dad is 3-5 to a nursing home

[IREDUFFY] This is a warehouse worker and his wife how much could she hide!!!!

[IREDUFFY] Rich That I know and I thank you.... luckily my sister is a case worker for welfare so she can guide us.. everyone is not that lucky

[Mary55] Yes she loves most of them there are two I have to watch her with she gets real nasty

[Thumpy1] Duffy, you'd be surprised how much money that two little people could put away over the years

HOSTRichOBoyle> it hope that it doesnt reach the point where she cant be with the kids

HOSTRichOBoyle> mary...do you have any particular questions?

[IREDUFFY] I am so confused... about my role in this all .. How do I allow my Dad to suffer thru this??

[Mary55] Is that common that women get aggressive?

[Thumpy1] duffy it is important to offer your dad as much support as possible

HOSTRichOBoyle> the disease can have so many effects...every patient is different

HOSTRichOBoyle> but such extreme behaviors can result...unfortunately

HOSTRichOBoyle> if the aggression and anger are extreme, the doc can prescribe medication

[Thumpy1] mary, my Mom did get aggressive, but as a whole, it is not real common for aggressiveness to occur

[lsc] .

[IREDUFFY] So much of this disease takes too much $$ wise and emotional wise

[Thumpy1] that is why I had to place my Mom..she tried to stab me, and I feared for my safety and that of my children

[IREDUFFY] ahhhh Mary I have sent you some mail... now and then again...

[Thumpy1] duffy, this journey becomes an emotional rollercoster

[Mary55] That is so very sad, I hope that the meds my Mom is on will help that

HOSTRichOBoyle> i hope that you all can connect and smooth out some of the rollercoaster

[Thumpy1] I am usually in the candid chatroom, about 5 nights a week

HOSTRichOBoyle> tomorrow we will have another chat session for ALz caregivers

[IREDUFFY] Since my Dad qwas diagnosed he never forgets to tell us how much he loves us.. he did before alot

[Mary55] Thankyou very much

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[lsc] Yes, thank you very much. I must go now. good night to all.

[IREDUFFY] Hello genie and welcome

[Thumpy1] hello genie

[Thumpy1] sure duffy

[IREDUFFY] ISC NIght and God Bless

[Genie] Hi Duffy - thanks

HOSTRichOBoyle> Hello Genie and welcome to ElderCare Answres

[Thumpy1] nite Isc

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[Genie] What do you say to someone who has Alzheimers and asks Why

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HOSTRichOBoyle> who are you caring for, genie, parent, spouse?

[Genie] Mother

[Thumpy1] they asked why they have it?

[IREDUFFY] Genie .... I lied to my Dad for the first time ever.. I held him and said it will be alright Daddy knowing I was lying you say I love you

[Genie] Yes - and seem to think her sisters should have it instead

[Thumpy1] just reassure her that you will stick with her throughout the illness, and that you will face it together

[Genie] We are long past lying about it - in fact not talking about it just confused her - secrets scare her

HOSTRichOBoyle> your mom is probably going through a period of grief

HOSTRichOBoyle> denial and anger that she has the disease

[Genie] Oh yes - specially anger

[IREDUFFY] Genie... We did not lie to him about his disease When I held my Dad on that day I lied and said it will be Ok Dad.. knowing it would not...

[IREDUFFY] Genie... We did not lie to him about his disease When I held my Dad on that day I lied and said it will be Ok Dad.. knowing it would not...

[Genie] The worst thing is that she has had it since 1988 and is so tough she will probably still be going physically when her mind is an empty shell

[IREDUFFY] Nothing is right about this.. I am so angry he deserves so much more he gave so much to us....

HOSTRichOBoyle> we have a series of articles on grief management in the Transitions & Spirituality Channel

[Genie] Mostly she does not recognise any of us anymore,

[Genie] And it feels really weird when she asks me who I am

[IREDUFFY] Rich well is one place I really have to go to.. I can handle my Dad, My Mom do all but my feelings are so mixed up I cry so often

[Genie] Duffy, I

[IREDUFFY] I am superwomen by Day, a baby by night

[Genie] Sorry, Duffy, do you ever just go out for an evening and pretend that you don't have to go home again, I do

[Genie] Oops, gotta go - Mother wants something

HOSTRichOBoyle> ok geneie

[IREDUFFY] Genie yes alot... I run but then I cant hide....

HOSTRichOBoyle> come back if u can

HOSTRichOBoyle> duffy...what kind of escapes and respite do u get?

[IREDUFFY] Rich my escapes are probally a quick fix...

HOSTRichOBoyle> they always are...but you need to physically get away sometimes

[IREDUFFY] I know Rich and the Phila Flyers right now are working wonders on my escape!!!!

HOSTRichOBoyle> lol

HOSTRichOBoyle> just stay away from demon rum

[IREDUFFY] Killing my Ma and Dad though he hates her watching sports for some reason now.. it takes away from him I think...

[IREDUFFY] Rich I try but my demon would be vodka if I had my choice

[IREDUFFY] We are all going to Ireland in July... our last thing together so to say.. My sisters our kids.. my aunt and uncle

HOSTRichOBoyle> that sounds great

HOSTRichOBoyle> i recently wrote a tip about traveling with ad/....did you see it?

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[IREDUFFY] No I did not But you are truly a angel... could you send it???

[Thumpy12] sheesh.did you have to kick me so hard?

[Thumpy12] if you want me to shut-up rich, just say so

HOSTRichOBoyle> it is in the last newsletter...i will send it again

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HOSTRichOBoyle> you were so quiet..i thought u were sleepin

[Thumpy12] how do you know me, duffy?

[IREDUFFY] OK your second is up!!!

[IREDUFFY] Yes Rich and I would so appreciate that It is not gonna be a easy trip in some aspects..

[Thumpy12] ???????????

[IREDUFFY] Thumpy I have talked to you a few times and exchanged and have read your mail.. by the way thanks for the :)'s

[Thumpy12] ok.....sorry, my CD is in full swing tonight

[Thumpy12] this AOL here is driving me nutty....can't gain access at all in this area

[IREDUFFY] hmmm good for you.. I must get mine going.. kids sleeping.. just my time.. I am gonna go

HOSTRichOBoyle> goodnight duffy

[IREDUFFY] Rich Your wisdom and kindness is so appreciated... I hope to have my sisters here soon.... cu all xoxo

HOSTRichOBoyle> he said he had access to resources and information...

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