Talking With Your Aging Parents

ElderCare Answers: Talking With Your Aging Parents
Special Guest Mark Edinberg, PhD
August 2, 2000
9:00PM to 11:00PM EST

[Loretta404] Hello

RichOBoyle> Hi Loretta and welcome to ElderCare Online

[MarkEdinbergPhD] Hello Loretta

RichOBoyle> Mark and I were just getting settled

[Loretta404] take your time

[MarkEdinbergPhD] Disclaimer: None of the comments by the host are meant to take the place of professional medical, legal, or psychological advice or treatment. All comments are meant to be viewed as educational.

RichOBoyle> loretta...how did you hear about this discussion group?

[Loretta404] from your web site, I find it the best online

RichOBoyle> thank you!

RichOBoyle> what is your care situation? and where are you located?

[Loretta404] I spend hours with it and still find more to read every time

RichOBoyle> it is people like Mark who contribute the best articles

[Loretta404] I'm in NJ aka bailheid

[Loretta404] when I come on as bailheid you call me loretta we have to get together here

RichOBoyle> i was going to ask :)

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[MarkEdinbergPhD] Hello Don

RichOBoyle> Hello Don and Welcome to ElderCare Online

[DonSmith] Hi

RichOBoyle> we are just getting settled in here

[DonSmith] Ok, I saw this is a news group and decided to drop in

RichOBoyle> you are welcome...what is your care situation and where are you located?

[Loretta404] ...

[DonSmith] My mother is 79, moving rapidly downhill in memory, esp since last year. She is in Florida, where my brother and sister live

[DonSmith] I am in Atlanta. They live in a small town, sister down the street from her

[DonSmith] for the last two weeks, for example, she has wanted to go home to her home in Chiefland, although she is there

RichOBoyle> I hope that you find this session, the articles on the site and our community to be helpful

RichOBoyle> have you forwarded info from this site to your sister?

[DonSmith] Haven't had much time to look at articles yet, but the news group in which I found it is very helpful

RichOBoyle> we have a little info on behavior management and other types of therapies to help deal with that

[DonSmith] I sent info to sister and brother, but he is out of town and she is probably still at church

RichOBoyle> take some time to browse this website...I think you will find a good amount of Alzheimer's info

[DonSmith] We have read the 36 hour day, so have some ideas on not causing a big deal out of it, just distract her and do the best you can with it

[Loretta404] ...

[MarkEdinbergPhD] ...

[DonSmith] We have someone living with her 24 by 7, one lady Mon-Fri, another on weekends, so she isn't alone

[DonSmith] We are just beginning to realize that we probably have 1-2 years left where she knows us.

[MarkEdinbergPhD] It sounds like the family is very involved

[DonSmith] Next question will be where to go from there.

RichOBoyle> every case is so unique...so you and your sister will have to take it gradually.

[DonSmith] We just had to turn off speed dialing on phone so she doesn't make 10-20 calls to same person in 10 min

RichOBoyle> definitely be prepared with behavior management and perhaps medications as per your doctors orders

[DonSmith] Had some concern in doing that, as it is one of the few things she can still do on her own.

RichOBoyle> like mark said...it sounds like you and your sister are very involved

RichOBoyle> I think that is the most important thing...stay involved and communicate with each other

[DonSmith] I think our hardest time is going to be when we decide if we place her in a home, when, where, are we all happy with decision, do we do it before she loses all ability to reason, or earlier

RichOBoyle> I will turn this over to Mark

[Loretta404] ...

[MarkEdinbergPhD] exactly, I have never met a family (involved) that "did it too soon"

[DonSmith] Her mother had alzheimers and died at age 88, after being in a home for 4 or 5 years, knowing no one.

[MarkEdinbergPhD] Frequently, after the fact, they tell me they should have done it 6 months earlier

RichOBoyle> now may be a good time to take a look at possible residences

[DonSmith] Based on that, with Mom 79, and going down hill fast in the last 18 months, we are looking ahead.

RichOBoyle> although more and more families decide to provide care at home...issues have to do with $, people and home safety

[DonSmith] Money isn't a real issue here, thankfully. Dad left her ok for the foreseeable future (he died 15 years ago)

[MarkEdinbergPhD] It is very hard to predict the course and duration of the illness, think about making your decision based on her functioning and your family's ability to handle her and cope with their own lives

[Loretta404] ...

[DonSmith] But the real question is, given the size of her town, it will be difficult to get increasingly professional help to bath her, feed her, deal with increasing levels of aggravation, etc.

RichOBoyle> the behavior problems often reach a plateau and then taper off as the disease progresses

[DonSmith] In the end, how do you feel good about putting a loved one, mother, in a home where strangers take care of her, when she knows it and doesn't like it?

RichOBoyle> but you are right -- getting skilled care is a priority

RichOBoyle> have you and your sister discussed this possibility by yourselves or with your mother?

[MarkEdinbergPhD] I have found that the degree of difficulty elders have in being in long term care is often related to the degree of guilt and ambivalence the family has about their being there

[Loretta404] ...

[DonSmith] My brother and sister and I spent an hour and a half last night on the phone, and for the first time really talked about the future, how close it is, what the options are.

[MarkEdinbergPhD] good for you

[DonSmith] I don't think any of us can handle her in our homes right now, unless we make some major life changes (my brother has 2 small children in a 3 bedroom trailer, I and my wife both work, my sister is a co-pastor of a small church and has another job which involves travel.

[DonSmith] So to take her in, we have to either quit work or buy bigger living quarters. My brother has a child who is autistic on top of it all, so he isn't really a candidate for taking her in

[MarkEdinbergPhD] Were any promises made to mom or dad about nursing homes?

[DonSmith] Thus a home may be the only option, unless one of us say retires. If we don't do that, a home may be necessary

[Loretta404] ...

[DonSmith] No, no promises, but she has told us numerous times that she doesn't want to be a burden to any of us.

[DonSmith] However, she also says she doesn't want to go to a home, and is only happy with her family

[DonSmith] I was down there this weekend to observe her while my sister was gone, and on Sat night we talked about 2 hours and she told me that she would really like to rotate from home to home.

RichOBoyle> rotating may be a VERY bad choice

[DonSmith] I had to tell her that I didn't think that would work, and why, and I felt bad about it, especially since I don't think she can under stand

RichOBoyle> when someone has Alzheimer’s Disease, any type of change can cause major disruptions in behavior

[DonSmith] I have some ideas about rotating, but wondered why you said that, and the changing is the one I had in mind.

RichOBoyle> consistency is the key to minimizing behavior problems

[DonSmith] This seems like a case where she wants something that we know is not best for her, but our only reason for not giving in so far has been our convenience.

[DonSmith] The real reason I guess is that it is bad for her too.

[Loretta404] ...

RichOBoyle> yes... you will find that she is very uncomfortable after the move, and when moving it causes additional physical and emotional stress

[DonSmith] We have seen major confusion when she has come up here for example, more and more with passing time. And especially if something changes unexpectedly, it compounds it.

RichOBoyle> unfamiliar surroundings, access to health providers etc

RichOBoyle> the confusion and agitation most likely will increase in time

[DonSmith] We have observed physical problems too, like bowel problems, eating, etc. when she moves

RichOBoyle> and if you move from place to place...it will get worse

[DonSmith] So when we can no longer get adequate help in her home, we should either put her with one of us and let it be, or find a home, is that the best idea?

[DonSmith] I've been hogging the conversation, is there someone else who wants to enter in?

RichOBoyle> in a general way, that sounds best to me

RichOBoyle> LOL

RichOBoyle> not at all...

RichOBoyle> make sure that you speak with your mothers physician, care providers and others who have the best understanding of the accessibility to health care services in your area.

RichOBoyle> Loretta... do you have anything to add here? You are caring for your husband....

[Loretta404] ...he is in early stage so I'm looking in for the future

[MarkEdinbergPhD] Loretta, do you have family support?

[Loretta404] I have a son near by but I am the only one to take care of him

RichOBoyle> L: have you tried to broach the subject of what his (your husband's) preferences would be?

[Loretta404] he would not want to go to a NH

[DonSmith] It has taken mom several years to acknowledge or verbalize that she has a memory problem. she has begun to do that lately. Will that likely develop into more discussion into preferences for later?

RichOBoyle> what are some techniques to start a discussion on preferences?

[MarkEdinbergPhD] It's more a question of strategy than techniques, but for starters:

[MarkEdinbergPhD] Attempt to find out what the underlying fears are - e.g. fear of being abandoned, fear of being poorly cared for, etc

[MarkEdinbergPhD] or maybe fear of family not caring for the person

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RichOBoyle> Hello swanklet and welcome to ElderCare Online

RichOBoyle> we just started discussing strategies for starting a difficult conversation

[Loretta404] ...

[DonSmith] Are there techniques to relieve the fears, once you figure out what they are? I mean, Mom can't remember what she did yesterday, or even this morning, and even after acknowledging that the trees in the yard were planted by my Dad, she follows up with asking who is going to take her back to her house in Chiefland. How do I get her to understand something as vague as the promise of attention from us after she goes into a home?

RichOBoyle> that's a good issues, Don.....many on ElderCare Online are dealing with loved ones with dementiairection here? some particular problem that others might be having?

RichOBoyle> I will edit this transcript and post it for others to read

[MarkEdinbergPhD] This is Mark Edinberg, Ph.D. I am a licensed psychologist in Connecticut and also work as an Intergenerational Mediator, working with families and elders on a range of topics and issues, such as estate planning, housing and business succession.

[swanklet] Hi, my husband was diagnosed with first stage Alzheimer’s Disease about 6 weeks ago. I still am going through a panic stage re: learning this tragic event.

[MarkEdinbergPhD] where do you live?

RichOBoyle> sorry to hear that news...I hope we can support you

[swanklet] Topeka, KS

[MarkEdinbergPhD] Are you aware of local resources for you?

RichOBoyle> what is on your mind right now? have you discussed the diagnosis with your husband?

[swanklet] He knows the diagnosis though I do not believe he realizes the serious, long term consequences. He tells me he wonders when he will feel better.

RichOBoyle> you both should consider serious legal & financial planning

[swanklet] I just do not know how to approach him about discussing this. I am afraid if he understood the illness that he would just give up.

[swanklet] He is a WWII veteran. I wonder whether the VA can help with the finances. I do not have info re: his discharge papers and serial no.

[MarkEdinbergPhD] Are there other family members?

[swanklet] No. he's an only child and has not had contact with his cousins for 30 to 40 years.

[MarkEdinbergPhD] Do you have children?

[swanklet] We have one daughter, 32 years old.

[MarkEdinbergPhD] What does she know about the situation?

[swanklet] She knows as much as I do. She was here for about a month and will return in a week or two to spend another month with us two.

[swanklet] In fact, she told me about your chat room.

[MarkEdinbergPhD] Is your husband comfortable talking with you and her together?

RichOBoyle> ..

[swanklet] He has never been able to talk much about emotional, significant matters. He has difficulty handling frustrating situations and does not have a very positive relationship with our daughter. They love each other but tension remains from her childhood.

[swanklet] Today is our 53rd anniversary.

[swanklet] She and I can share thoughts and feelings OK.

[MarkEdinbergPhD] Swanklet: It sometimes works to have a trusted (male?) MD, lawyer, minister etc. suggest that somehow you and your husband sit together to plan for the future.

[swanklet] Roger currently is being treated for depression and I have a good, helpful relationship with his psychiatrist. The doc seems to look to me for info re: how Roger is getting along on the medications. He also has supported me with such things as encouraging him to walk regularly for exercise, also to lock up his guns and ammo. Rog is a gun collector, but seldom shoots.

[swanklet] We have an appt with the psychiatrist tomorrow and I can see if I can bring this up during our meeting. The psych. has asked me to accompany Rog to the monthly meetings, and he has told Rog not to drive.

[swanklet] Yes, I am concerned about safety with the weapons laying around.

[swanklet] I wonder how long he will have good judgement.

[MarkEdinbergPhD] These are important issues. Please discuss them directly with the psychiatrist, your husband's primary care MD.

[swanklet] Currently we are changing our primary care MD. We saw our primary care doc about 6 weeks before the neurologist diagnosed the AD. He told me then that Rog was doing just fine, no health problems, and when I told him "but he sleeps 16-18 hours a day, the primary care doc said, "well, that's your responsibility."

[MarkEdinbergPhD] You could also get in touch with the local Alzheimer's Association chapter and get involved with a support group

[swanklet] I will contact the Alzheimers Assn chpt and learn about support groups. Is what I have said so far the usual types of problems?

[swanklet] Rog is a very mild person, though I can see from his facial expressions that frequently he is very angry with what I say or do.

[swanklet] I have a lot of anxiety about this illness and that could be my biggest problem at the moment.

[swanklet] I do appreciate being able to converse with you two.

[MarkEdinbergPhD] You raise some important issues. It is impossible for me to tell you from afar what the correct course of action is.

[MarkEdinbergPhD] However, you would be well served to have responsible and good professional help available close by, use the Alzheimer's association to get names of the good MDs and others who can work with you on these issues

[swanklet] In terms of available relatives, we are rather isolated. Our daughter lives about 800 miles away

[swanklet] I am beginning to think the Alzheimer's Assn. is a good resource that I was unaware of its useulness.

[MarkEdinbergPhD] . All comments are meant to be viewed as educational, that is, chat room members must make their own personal decisions on whether or not to accept and/or use the ideas or principles that are presented. The reason for this disclaimer is that it is difficult if not impossible to get a full understanding of a family situation and make specific recommendations in the context of a chat room interaction.

[MarkEdinbergPhD] Usually, the president or executive director (if there is one) is quite knowledgable about resources, including attorneys, MDs, case managers, etc.

[swanklet] I understand. I have about 13 yrs experience working in administration of a mental hospital and through that have minimal understanding of that area.

[MarkEdinbergPhD] good, use your knowledge

[swanklet] You are helpful. I wish there were a way to print our chat so that I can review it again.

RichOBoyle> I will transcribe it and post it to the website

[swanklet] Thanks. that will be helpful. I think I have such anxiety that I have difficulty working on the financial and legal matters. Perhaps the Alzheimer's Assn can help me get started.

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[MarkEdinbergPhD] Hello, Gaza

RichOBoyle> hello gaza and welcome to ElderCare Online

[gaza] Just thought I'd drop in for a visit.

[MarkEdinbergPhD] Are you a caregiver?

[gaza] Rich, thanks for sending me the Newsletters. I've enjoyed receiving them. Yes, I take care of my Mother with Parkinson's/dementia

RichOBoyle> where are you located?

[gaza] Been at this for about 2 years now.

[gaza] Jacksonville, Florida

RichOBoyle> what is on your mind tonight?

RichOBoyle> we have been winding down but would like to help

[gaza] Not much. I just wanted to see what this was all about.

[gaza] I used to be a regular with Alt.support.Alz, but don't go there much anymore.

RichOBoyle> we talked a bit about how to raise the topic of difficult issues

RichOBoyle> are you active in any online groups?

[gaza] There are certainly lots of those, aren’t there?

RichOBoyle> you can find one most nights of the week

[gaza] Not really active anymore in any groups. I've become my own expert, so to speak

[gaza] The loneliness is the hardest for me now.

RichOBoyle> that is where these groups are helpful....

RichOBoyle> tonight was a special session

RichOBoyle> but most other nights it is more social

[gaza] I used to chat a lot with jayess, zuzu and Nitewing, but am not so active lately

RichOBoyle> ah yes....they are here most Thursday nights

[gaza] I thought I'd try tomorrow nite, since it's difficult for me in the evenings most nights

[gaza] My husband is going out of town tomorrow so I'll have more time to check things out

RichOBoyle> There never is a "good" time...not much free time

RichOBoyle> please join us

[gaza] that's the truth

[gaza] I would like to become more involved. Rich, you usually send me an invitation. I've been on your mailing list as Inglis

[gaza] I appreciate your communiques

[gaza] Well, guys, since it's now 11:00, I shall bid you both a fond adieu. I have a note on my computer to join in tomorrow. Hope to chat then.

[MarkEdinbergPhD] OK, good luck

RichOBoyle> please come by

RichOBoyle> good night gaza

[gaza] Thank you and goodnight

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