ElderCare Answers March 8, 2000

ElderCare Answers with Host Rich O’Boyle
March 8, 2000
8:30PM to 11:00PM EST

_RichOBoyleHOST> Hi there

_RichOBoyleHOST> We are all a little early here :)

[kacy] I live in Oklahoma and work for the Department of Human Services. I provide adult protective services and work with many elders who have Alzheimer’s Disease.

[kacy] Hello Rich

_RichOBoyleHOST> Welcome kacy and others

_RichOBoyleHOST> have you all been here for long?

[gwt4jc] Hi, R.O.B. Thanx for your emails to me on Juno.

_RichOBoyleHOST> I am glad that you all are here.

[kacy] not too long. I feel sometimes that not only am I a caregiver for my mom but for all of the others that I serve

_RichOBoyleHOST> What are your care situations, gw and maureen?

[gwt4jc] Kacy, my wife is now in Norman, OK, where our daughter, an RN, cares for her. May I abbr some words? I type about 3 wds/day.

[kacy] sure.

[kacy] that is good that you have your daughter to help

_RichOBoyleHOST> lol...please dont worry about ypos or mispellings...I am guilty as charged

_RichOBoyleHOST> you are lucky that your daughter has nursing skills

[gwt4jc] Thanx. I cared for my wife for several months, but finally had to put her in a fine, nearby bd & care home, where I visited her hrs/day.

_RichOBoyleHOST> how long ago was that?

[gwt4jc] She went to OK 11/22/99. We stay in contact by em or ph nearly daily.

_RichOBoyleHOST> she gets email at the home?

_RichOBoyleHOST> thats great :)

_RichOBoyleHOST> whats on your mind tonight?

[gwt4jc] A few days ago she told me they were in India, & had ridden a train all day. She has frequent "delus'ns".

_RichOBoyleHOST> does she have an AD or dementia diagnosis?

[gwt4jc] She can't use a PC, & right now my dau"s PC is defunct.

>> rogo616161 has joined channel #XC.1993632

_RichOBoyleHOST> Hi Bob, Welcome to ElderCare Answers

[rogo616161] Glad to be here

[gwt4jc] She had a shunt installed about a yr ago, but it did little good. She has had 2 or more TIAs.

_RichOBoyleHOST> How is your wife adjusting to the facility?

_RichOBoyleHOST> are the delusions something altogether new or just more frequent?

_RichOBoyleHOST> Bob: gwt's wife recently moved to a board and care home

>> maureen has left channel #XC.1993632

[rogo616161] Thanks, I’ll catch up as we go

[gwt4jc] My wife sometimes thinks our dau is her sister, & she rarely knows where she is. They're more freq now. Dau says about 1/2 the time.

[kacy] gwt are you going to get an opportunity to come to ok and visit any with your wife?

_RichOBoyleHOST> That is an unfortunately common effect of dementia

[gwt4jc] ROB, my wife is with my dau, not in t bd & care home now.,

_RichOBoyleHOST> oh, i see...sorry

[gwt4jc] KC, I hope 2 be able 2 go in Jul. Dunno.

_RichOBoyleHOST> have you and your daughter read fact sheets and background info on dementia?

_RichOBoyleHOST> and spoken with her doctor?

[gwt4jc] Some. My dau bought some bks, & I use t libr. I/ve been helped by YOU, ROB.

_RichOBoyleHOST> i am so glad to hear that...thnx :)

[gwt4jc] Thank U.

_RichOBoyleHOST> the loss of recognition is painful for family members...

[gwt4jc] Yup.

_RichOBoyleHOST> you might create a scrap book of pictures of family members and use it as a discussion prompter with your wife

[rogo616161] is the loss of recog demtia or alz

_RichOBoyleHOST> reinforce to her who you/dau are

[gwt4jc] (Yup is shorter than "Indeed.")

_RichOBoyleHOST> yes, what is the diagnosis? is it ministroke dementia or AD?

[gwt4jc] We don't know yet. She has an apt w/ a neurol't nxt wk.

_RichOBoyleHOST> pls keep us posted....

[gwt4jc] Xlnt idea, t photos. Thanx.

_RichOBoyleHOST> have you been able to have a good dialogue with the neurologist?

_RichOBoyleHOST> create a "Memory Book" -- with pics and keepsakes like diplomas or theater tickets, etc.

_RichOBoyleHOST> its good for your wife AND you

[gwt4jc] One here in CA, but she hasn't been able 2 get in yet, in OK.

_RichOBoyleHOST> how is your daughter adjusting to the responsibility?

[rogo616161] memory book is what we are working on with my mother. get rid of 'post-its'

gwt4jc] She's a fine Christ'n, & we have a fine family, but it's TOUGH on her.

[gwt4jc] I don't know how long she will be able 2 take it.

_RichOBoyleHOST> definitely look into respite options for her

[kacy] maybe she could join a support group in Norman. I know they have some

[gwt4jc] We do hire another lady 2 come in 1 day a wk.

_RichOBoyleHOST> and for ways to share the care with other family members....

_RichOBoyleHOST> over time you may need to increase the # of visits

_RichOBoyleHOST> hands on caregiving, esp for dementia , is very intensive and draining

[gwt4jc] I'll suggest she join a support group. Surely later we'll have 2 hire more help/

_RichOBoyleHOST> I have a list of Alz Assn support groups for OK

_RichOBoyleHOST> you can go to the Neighborhood Networks section and click on Oklahoma

[gwt4jc] Is it possible to get a definite diagnosis on whether it's Alz or dementia?

_RichOBoyleHOST> Also, take a look at the WW Chat Guide for online chats and support groups

[rogo616161] good question

_RichOBoyleHOST> you can get a diagnosis of dementia, but usually the diagnosis is "Probable AD"

[gwt4jc] Thanx

_RichOBoyleHOST> specific types of dementia like Pick Disease, Lewy Body Dementia or TIA-related dementia can be "diagnosed"

[gwt4jc] What's AD?

_RichOBoyleHOST> AD = Alzheimer's Disease

[gwt4jc] O.

[kacy] it is my understanding that by eliminating all other medical conditions or causes of the dementia that they come up with the AD. Is that right?

_RichOBoyleHOST> if you have the choice, try to take your wife to an Alzheimer's Disease Research Center for an accurate and focused medical review

_RichOBoyleHOST> yes that is right…

_RichOBoyleHOST> they usually check for environmental causes, like drug interactions, depressions, etc.

_RichOBoyleHOST> and then narrow it down with tests

[gwt4jc] I almost called it t big "A"

_RichOBoyleHOST> I am not a doctor and honestly do not know the methodology

_RichOBoyleHOST> some people are comforted with a "diagnosis"...it gives them something to fight

_RichOBoyleHOST> not knowing is scary and can lead to denial

[gwt4jc] Do u know / an AD resch ctr?

[kacy] I know that is what they have done with some of my clients. You’re very right

_RichOBoyleHOST> I will refer you to the Medical Research Assistant on this site....

[gwt4jc] Thanx

_RichOBoyleHOST> it has a directory of ADRCs (Alz Dis Research Ctrs)

_RichOBoyleHOST> it also has links to medical books online and academic websites

[kacy] that is a good tip thanks

_RichOBoyleHOST> GW: you really can put yourself in a good position by educating yourself

_RichOBoyleHOST> your daughter has a leg up with her nursing bkgd

_RichOBoyleHOST> but you can also share the info on this site with her

_RichOBoyleHOST> thnx maureen :)

_RichOBoyleHOST> Picks is a type of dementia...rare but pretty well documented

[kacy] we have a caregiver come in daily.

[FREDRICK] yes, unable to verbalize her thoughts, leans backwards when walking, trouble moving around, slow reactions

_RichOBoyleHOST> FR, have you spoken with a physical therapist or her MD to learn ways to help her be mobile?

[gwt4jc] My wife has those sympts

_RichOBoyleHOST> GW...that is important to have a specialized diagnosis

[gwt4jc] Thanx

[kacy] i was really worried but the lady who works for visual services says that she knows where everything is in her home and can get around better there than if she was to go to a strange environment

[FREDRICK] she was in the hospital for a week with pneumonia, when she came home, had a physical therapist, but has had trouble learning to use a walker.

_RichOBoyleHOST> yes, Kacy, blind people can adapt very well their home and familiar environment

[gwt4jc] Fr, my wife 2

_RichOBoyleHOST> when considering moving her, that should be a very important decision

_RichOBoyleHOST> FR: it is usually best to keep your elder as active and independent as possible

_RichOBoyleHOST> but when falling is a danger, you should be very protective

[FREDRICK] Take her to church on Sunday, have purchased a "Travel Chair", small wheels, helpful around the house or in buildings.

_RichOBoyleHOST> very good FR

[kacy] True. We plan to allow her to make that decision as she is still very sharp and we also have first alert for emergencies

[gwt4jc] ROB, when is it best to institutionalize one?

_RichOBoyleHOST> kacy, does she have dementia or forgetfulness?

_RichOBoyleHOST> GW: that is really an important and specific medical and family decisions

[FREDRICK] Started showing symptoms in 1996, was diagnosed in 1997, been downhill since then.

[kacy] I understand as like I told gwt. I do adult protective services here in Oklahoma. which makes it more difficult for me to leave her in her home.

[kacy] no she is very very sharp

_RichOBoyleHOST> if you cant provide the best care in the home, then a more institutionalized setting is the next choice...

[maureen] are they on medicine Aricept

_RichOBoyleHOST> kacy, does the local or state organization for the blind offer "sitters" or other assistance in house?

_RichOBoyleHOST> are you concerned that she is alone or what is your main concern?

_RichOBoyleHOST> FRederick: are you the sole caregiver?

[kacy] we have advantage care going into the home daily. i think that we have covered all basis to keep her safe.

[FREDRICK] Was on aricept but started having seizures, so neurologist put her on Lamictal which stopped the seizures, took her off aricept, didn't notice any changes.

[FREDRICK] Yes, I'm her husband, take care of her 24/7 but do have help 4 hours in am every day.

_RichOBoyleHOST> personally, i would favor your mother's preferences, unless there was a glaring problem or dementia

[maureen] where do you find this help to come in on a daily basis

_RichOBoyleHOST> FR: How are you handling the care and emotional issues?

[kacy] i feel that she gets depressed although she will deny it to the hilt.

- we plan on doing that for as long as possible.

_RichOBoyleHOST> maureen: what state are you in?

[maureen] new jersey

[FREDRICK] hers or mine?

_RichOBoyleHOST> depression is the unspoken problem in so many elderly...also isolation

[kacy] maureen check with your local depart. of human services.

[kacy] i agree.

[maureen] thats why I think they should go into assisted living. My mom has beginning stages of Alzheimers

_RichOBoyleHOST> Maureen: the Neighborhood Network on this site ahs links to local resources in NJ

_RichOBoyleHOST> for a specific facility, I suggest eldersearch.com – they have a directory of facilities

_RichOBoyleHOST> A basic approach to "institutionalization" is to go step by step....

[maureen] do you think it will be worse for my father to have my mom confined in the same room or is it better to stay at home and get help in.

_RichOBoyleHOST> That is -- as needs increase, add more services to the home, such as adult day care and home care

[rogo616161] maureen - in north jersey

_RichOBoyleHOST> Then move to a facility like assisted living (if you can pay for it) or into a family's home

[FREDRICK] Got to go friends, bye and God Bless you all!

>> FREDRICK has left channel #XC.1993632

[maureen] bergen county

_RichOBoyleHOST> and then as a last resort go to a specialized AD facility or a nursing home

[rogo616161] my mom is in wynwood in west orange

_RichOBoyleHOST> Bob, how long has your mom been there?

[rogo616161] assisted living

[rogo616161] 1.5 yr

[rogo616161] since it opened

[gwt4jc] All of you r very fine, folk, & r 2 b admired. I must leave. God bless u all.

_RichOBoyleHOST> would you tell us about your decision to place her there?

_RichOBoyleHOST> thnx GW...i hope this was helpful

_RichOBoyleHOST> please come back in 2 weeks or email me :)

[kacy] bye gtw.

[rogo616161] she needed 24 care for her own safety

_RichOBoyleHOST> sorry, maureen....I missed your last question....

[maureen] my dad has a bright sharp mind. His walking is bad my mom mind is shot and she can walk findwhat is wynwood is it assisted living or nursing home

[rogo616161] she was diagnosed at carrier clinic

[maureen] is wynwood a nursing home or assisted living

_RichOBoyleHOST> did she participate in selecting the facility or had she progressed too far?

[rogo616161] wynwood is assisted living run by Alterra

[maureen] she does not want to go. she can't remember from day to day. she wants to take her cat

[rogo616161] we inclyded by with strong direction

[maureen] we went to atterra in wayne. the cost was high with hidden extras

>> gwt4jc has left channel #XC.1993632

[rogo616161] are costs are problem and can keep going up

[maureen] its very hard decision because my father cannot take care of her much longer at his age 86

_RichOBoyleHOST> maureen...that is very crucial...he might cause himself harm and injury if he continues to care for her

[maureen] she cannot get in without him because of her memory and I worry what happens should he pass away first. where does she go

_RichOBoyleHOST> moving them together may reduce the stress on each of them...but increase the stress on you :(

_RichOBoyleHOST> Then she has the support of others at the facility, she can move in with you, or she can move to a specialized AD facility

_RichOBoyleHOST> none are easy choices

[maureen] will it be worse for my dad being in assisted living and confined to one room with her. or will it put his mind at ease knowing she can't get hurt and someone is always there to give her medicine etc.

_RichOBoyleHOST> usually assisted living allows for mobility within a complex of buildings

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_RichOBoyleHOST> have you visited any facilities?, even just to take a look?

_RichOBoyleHOST> Hi Cally, Welcome to ElderCare Answers

[maureen] she is very stubborn with my dad will not take medicine and never listens to him when he tells her to do something

[maureen] yes we went to aterra in wayne and whitehall in rochelle park

[cally] thanks

_RichOBoyleHOST> they should offer opportunities for socialization -- which is good for both of your parents

[kacy] what does your dad want to do? has he said?

_RichOBoyleHOST> a good facility will have plenty of activities and programs

[maureen] they are about the same in price couple hundred difference

[maureen] dad wants to go. mom changes from day to day. can't remember what she said an hour ago

[maureen] dad cooks and asks neighbors and children to go to food stores.

_RichOBoyleHOST> well, I think that your dad might need the relief and new surroundings

[maureen] she collects junk books papers stuff everywhere

_RichOBoyleHOST> any change for your mom could provoke behavioral problems and anxiety

[maureen] will it be worse for her in a new surrounding and just better for him

_RichOBoyleHOST> overall, I would guess it would be good for him....

[maureen] will she be lost constantly or gradually get used to it

_RichOBoyleHOST> and could go either way for her

_RichOBoyleHOST> each AD patient is different and reacts to changes differently

_RichOBoyleHOST> you and your dad might have a feel for how her disease is progressing

[maureen] they will be selling their house and don't know exactly if they can afford it or not but I think its the best thing for them

_RichOBoyleHOST> Bob, how did your mom adjust?

[maureen] he calls all the time with new stories about her

[kacy] have to go. Good night all

_RichOBoyleHOST> you might talk with a financial planner to really assess their ability to pay

_RichOBoyleHOST> goodnight kacy

_RichOBoyleHOST> thanks for coming :)

[maureen] now she is asking where she puts things. Like dishes and butter and stuff

>> kacy has left channel #XC.1993632

_RichOBoyleHOST> Have you read the Learning Resource Guide on "Coping With AD?"

_RichOBoyleHOST> It deals with these behavior matters

[maureen] I appreciate your help yes I have checked there I must go now thank you again

_RichOBoyleHOST> Throughout the site, there are very helpful articles and Jan Allen (community activist) has written a few pieces on behavior

_RichOBoyleHOST> goodnight maureen

_RichOBoyleHOST> thanks for coming

>> maureen has left channel #XC.1993632

_RichOBoyleHOST> How are you tonight Cally?

[cally] hanging in there!!

_RichOBoyleHOST> What's on your mind tonight?

_RichOBoyleHOST> who are you caring for?

[cally] I'd like to ask for maybe some tips on persuading Mum to try Day care

_RichOBoyleHOST> gotcha

_RichOBoyleHOST> have you asked her about it before?

[cally] Oh yes, she says flat out no! I say that I don't feel like I can leave her on her own to go to work

_RichOBoyleHOST> does she have dementia/AD?

[cally] she says I can do what I like!!

[cally] yes

_RichOBoyleHOST> she can get aggressive and adamant?

[cally] only diagnosed a few weeks ago

_RichOBoyleHOST> i see

[cally] I wouldn't say aggressive just obstinate

_RichOBoyleHOST> do you go out with her frequently? like to the shops or to visit friends/family?

_RichOBoyleHOST> you might talk with the day care operators and mention your situation

[cally] not a lot, going out wears her out

_RichOBoyleHOST> they deal with this all the time

_RichOBoyleHOST> hmmm....i was thinking that you can take her in the car and

- then stop by the center and stay there with her for 1 hour

[cally] good idea

_RichOBoyleHOST> and then leave with her...slowly show her that it is not scary or awful _RichOBoyleHOST> some seniors really come to look forward to the socialization and activities

_RichOBoyleHOST> is it safety that is your prime concern? Then maybe you can find a sitter or home care aide

_RichOBoyleHOST> mixture of day care and home care

[cally] safety is a concern, I have to work just the mornings

_RichOBoyleHOST> "Negotiating" and compromising with an AD patient is frustrating

_RichOBoyleHOST> Take a look at Jan Allen's article on "Difficult Behaviors"

_RichOBoyleHOST> it is a practical discussion of conversational techniques that you can use with your mother

[cally] luckily she is usually ok in the mornings, things deteriorate later in the day

_RichOBoyleHOST> for example....don't say "Do you want to go to day

- care"...but rather "Would you like to go to day care now or in 20 minutes"

[cally] where would I get this article

_RichOBoyleHOST> it is not so simple (of course," but gives you an idea of technique

_RichOBoyleHOST> go to the caregiver support network on this site

_RichOBoyleHOST> and click on Jan Allen, community activist

_RichOBoyleHOST> Jan has DECADES of hands on experience

_RichOBoyleHOST> she has written several articles

[cally] like I don't ask her now if she wants a shower, I say get in!!

_RichOBoyleHOST> lol

_RichOBoyleHOST> you can't negotiate or "reason" with her

_RichOBoyleHOST> that is hard because we have been trained to respect people and ask them what they want....

_RichOBoyleHOST> you get the idea

[cally] we have to laugh or we'd go nuts

_RichOBoyleHOST> laugh and cry...usually at the same time

_RichOBoyleHOST> have you participated in other chat sessions on the Net?

_RichOBoyleHOST> there are a few Excellent AD chats out there

_RichOBoyleHOST> you can meet other caregivers and they have lots of experience

_RichOBoyleHOST> some questions for you:

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_RichOBoyleHOST> have you and your mum reviewed legal issues and documents?

_RichOBoyleHOST> hi Thumper ...welcome

[Thumper1] good evening Rich

[cally] no, I find it hard to connect at the right time, I'm in Australia

[Thumper1] hello cally

_RichOBoyleHOST> i thought so ...you call her "mum" :)

[cally] hello Thumper

_RichOBoyleHOST> the chats are at this time on Mondays and Tuesdays

[Thumper1] where is your Mum located at, Cally?

[cally] with me at home,

[Thumper1] do you have a power of attorney-type document yet, allowing you to make all of her legal decisions?

[cally] I have to go, she doesn't like it if the computer takes me away for too long

[cally] yes I have power of attorney

[Thumper1] ok cally. that is good

_RichOBoyleHOST> in the US...that is so important....

_RichOBoyleHOST> make sure that you consult a lawyer or trusted advisor who can help you consider all the requirements

[Thumper1] what time of day is it there right now?

_RichOBoyleHOST> how are YOU handling the recent diagnosis?

[Thumper1] .

[Thumper1] are you still there cally?

_RichOBoyleHOST> hopw are you tonight thumper?

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[Thumper1] doing just fine...awaiting another chatter's visit tomorrow

_RichOBoyleHOST> Cally...you have cloned yourself :)

[cally1] sorry my computer disconnected, just wanted to say thank you, bye

[Thumper1] have you ever talked with Nostrofia?

_RichOBoyleHOST> you’re welcome

[Thumper1] ok cally…take care and goodbye

_RichOBoyleHOST> Cally, come by anytime or email if you like

_RichOBoyleHOST> wait...

_RichOBoyleHOST> the chat guide has chat session at all times of the day

_RichOBoyleHOST> you might find on that fits your down under schedule

>> rogo616161 has left channel #XC.1993632

_RichOBoyleHOST> i don’t think i have met nostrofia ?

[Thumper1] I am a former caregiver myself, and have lots of experience

[cally1] ok thanks again :)

[Thumper1] anytime

_RichOBoyleHOST> gnite...or gday :)

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[Thumper1] lol

_RichOBoyleHOST> Bob is a friend of my father's.....his mom is in an assisted living facility with AD

_RichOBoyleHOST> lol

_RichOBoyleHOST> Bob doesn't know about our inside jokes...

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_RichOBoyleHOST> Hi JimMack, welcome to ElderCare Answers

[rogo61] ROB and thumper, unfortunately I've gotta skoot. Will see you again.

[Thumper1] hello Jim

_RichOBoyleHOST> thanks for coming Bob and talk to you soon :)

[Thumper1] nite Bob...take care

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[Thumper1] Jim, to talk in chat, type where it says "type here" and hit enter

_RichOBoyleHOST> Are there many AD/DS resources on line?

[JimMack] Whats AD/DS?

[Thumper1] no there are not, that is why I have decided to do this site

_RichOBoyleHOST> ALzheimer's Disease / Down's Syndrome

[JimMack] i care for a 94 father who has bad dementia

[Thumper1] I was finding bits and pieces of information, but nothing really compiled together

_RichOBoyleHOST> is he at home with you?

[JimMack] yes

_RichOBoyleHOST> You will do a great service and create a great resource then

_RichOBoyleHOST> Jim, are there particular issues that are bothering you right now?

[JimMack] yes. He has no current memory retention, and needs to be reminded

- to do almost everything other than bodily functions

_RichOBoyleHOST> what kind of help do YOU get, home care, respite, family?

_RichOBoyleHOST> How long have you been caring for him?

[Thumper1] .

[JimMack] since 1994. 2 siblings living locally don't help. he is on a permanent catheter as his bladder muscle has given out.

[Thumper1] the lack of help from sibs is common, unfortunately

[Thumper1] I am the youngest of 10, and got no help at all

_RichOBoyleHOST> do you have access to home care aides, respite care or day care?

[JimMack] he also doesn't do anything - just sites around all day. His macular degeneration allows only a correction with glasses to 20/70, so he doesn’t read or do crossword puzzles anymore. A magnifying doesn’t help

_RichOBoyleHOST> it seems that one child always shoulders it

_RichOBoyleHOST> you can expect less activity....perhaps there are some activities you can still help him with....

_RichOBoyleHOST> conversation, reading to him

[Thumper1] is he still walking, Jim?

_RichOBoyleHOST> listening to music

_RichOBoyleHOST> good question

[JimMack] it's amazing that your 9 other sibling don't care.

[JimMack] yes he still is walking, but I fear that on one of his outdoor walks he'll get lost. I can't really lock him in.

_RichOBoyleHOST> Jim are you on speaking terms with siblings?

[Thumper1] you will need to walk with him...

_RichOBoyleHOST> since he is still mobile, exercise is crucial

[Thumper1] try taking daily walks, weather permitting

_RichOBoyleHOST> short distances

[Thumper1] short walks, so that you do not over stimulate him

_RichOBoyleHOST> the activity will help keep him flexible and could improve wellbeing

_RichOBoyleHOST> also, it is something you can do with him...to look forward to

[JimMack] the problem is his not having enough money to afford a full time caregiver, and my no being able to afford to be home with him all the time.

[Thumper1] walking is one of the best and most natural forms of exercise

_RichOBoyleHOST> you might research day care opportunities...perhaps with a local church

_RichOBoyleHOST> money is always an issue

[Thumper1] have you looked into Medicaid qualifying?

[JimMack] I just ordered a book to i hope help me its called "Making the Moments Count : Leisure Activities for Caregiving Relationships by Joanne Ardolf Decker" have you heard of it??!!

_RichOBoyleHOST> some people have been successful setting up "cooperatives" where they share CG time and pool resources

[Thumper1] no i have not, but sounds like a good one

_RichOBoyleHOST> I have not heard of it...have u thump?

_RichOBoyleHOST> Is it available on Amazon?

_RichOBoyleHOST> sounds like the kind of book i would like to review

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[Thumper1] good evening jon

_RichOBoyleHOST> Hi Jon, welcome to ElderCare Answers

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[jon12345] hey Rich

[JimMack] this has also been a "bad" year since he now does not want to go on any vacations with me. its rough to find a respite home

[JimMack] i ordered it from b&n - i thing they both had it

[Thumper1] very true, Jim...lots of sacrifices with home caregiving

_RichOBoyleHOST> some nursing homes and assisted living facilities offer respite care for a week

[Thumper1] Jim, I meant

_RichOBoyleHOST> but be careful about causing anxiety with the change of scenery

_RichOBoyleHOST> jon....we are discussing Jim's dad with severe dementia

_RichOBoyleHOST> concern with safety and access to respite care for Jim and activities for dad

_RichOBoyleHOST> there is plenty of you to go around...the CGs need experienced CGs to mentors

[JimMack] the unfortunate part of it is, that the respite locations don't take reservations and they'll only reserve a few weeks ahead, so planning a vacation is difficult

[Thumper1] that is very true, Jim

_RichOBoyleHOST> yeah...but you have a very important and responsible position

_RichOBoyleHOST> as CG to your father...you are making many sacrifices...good for you!

[Thumper1] I put my social life completely on hold with being a caregiver

[Thumper1] no trips, no parties, etc

_RichOBoyleHOST> have you spoken with siblings about this?

_RichOBoyleHOST> it is probably a sore spot :(

_RichOBoyleHOST> Jon...who are you caring for?

[Thumper1] in my case, my sibs didn't care

[Thumper1] Jim, do you have any sibs that can help you out?

[JimMack] yes. One's new husband doesn't get along with my Dad, and the other is concerned about the potential for urine spills in their house

[Thumper1] Jon, you need to at least type a dot every so often to avoid being booted by the room

_RichOBoyleHOST> can they come to your house and house sit and caregive?

[Thumper1] sheesh, Jim...lots of help there, huh?

[jon12345] sorry....poor eyesight ... hard to read .... I'll try to catch up

_RichOBoyleHOST> no problem Jon...what's your caregiving situation?

[Thumper1] jon...you can increase the size of the text here

[jon12345] how?

[Thumper1] type this exactly *chat fontsize 14

Please wait while we load code to execute the command:chat

[jon12345] wow...thanks

_RichOBoyleHOST> hey it works :)

[Thumper1] write that down.....any XOOM room will accept those commands

[JimMack] in the over 5 years he has been with me, my sister has been to my house twice, and my brother hasn’t been over since last May. We talk but they don't offer. I guess I should be more assertive

[Thumper1] I had trouble with assertiveness...was easier to just do it myself than to fight

_RichOBoyleHOST> there is also a point where you can write them off...maybe not advisable....

_RichOBoyleHOST> are there ways to get them involved even just inviting them over for lunch and not expecting them to assist

_RichOBoyleHOST> show then its not so bad :)

_RichOBoyleHOST> get them acclimated to the home....slowly

[Thumper1] I tried to involve sibs in decisions

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[JimMack] i guess at times it seems a lost cause. when he was in the hospital they didn’t go a see him

[Thumper1] because most live out of state, they were not interested...

_RichOBoyleHOST> i am so sorry to hear that

[Thumper1] I understand that, all too well, Jim

[JimMack] they said that he wouldn't remember anyway, so what’s the use in going to see him!?

_RichOBoyleHOST> well, wont THEY remember

_RichOBoyleHOST> ?!

_RichOBoyleHOST> that is painful for me to hear

[JimMack] good point. i didn't know how to respond to them.

[Thumper1] my sibs thought that too, when Mom was near the end, but she had a window of clarity during their last visit, and they would have missed it if they hadn't made the effort to come

_RichOBoyleHOST> it is those priceless things that they will miss

[JimMack] well enough of the negative. one good point is that I can play the same Sherlock Holmes audio tape over and over, and he enjoys it each time.

_RichOBoyleHOST> hahah

_RichOBoyleHOST> but do YOU get tired of it :)

[Thumper1] LOL @ Jim

[JimMack] i go out of the room. he does still play the piano, but repeats quite often

_RichOBoyleHOST> i am working on a series of articles on Family Dynamics....

_RichOBoyleHOST> i hope that you guys can benefit from them

_RichOBoyleHOST> with a freelance writer

[Thumper1] what kind of topics would it entail?

_RichOBoyleHOST> topic 1: holding a family meeting

_RichOBoyleHOST> topic 2: the only child as CG

_RichOBoyleHOST> topic 3: talking with aging parents

[Thumper1] great topics

_RichOBoyleHOST> topic 4 sibling rivalry and conflicts

[Thumper1] lol...I needed #4

_RichOBoyleHOST> topic 5: discussing the AD diagnosis

[JimMack] amen

_RichOBoyleHOST> probably more topics as well

[Thumper1] (very big grin)

[Thumper1] hi boydclan

[Thumper1] Rich...do you meet here most Wednesdays?

[boydclan] just got on what topics are being discussed

_RichOBoyleHOST> Jim you might also contact your sibs by phone proactively to give them updates

_RichOBoyleHOST> it can be a little bit if a guilt trip,

_RichOBoyleHOST> but it also gives them the chance to respond

[Thumper1] lol

[Thumper1] thats playing dirty, rich

_RichOBoyleHOST> right now we are discussing sibling issues and etc.

_RichOBoyleHOST> we are playing nice :)

[Thumper1] yeah yeah yeah

_RichOBoyleHOST> i was thinking that if dad's health took a turn, then they would have the chance to visit or even to loosen them up

[Thumper1] possibly

_RichOBoyleHOST> BoydClan....what is your care situation?

_RichOBoyleHOST> rich quickly changes the subject

[boydclan] my father died with Ad now an inlaw

[Thumper1] (I noticed)

_RichOBoyleHOST> sorry to hear that

_RichOBoyleHOST> caring for your inlaw now

[Thumper1] sheesh boyd...I am sorry

[boydclan] making the move after 51 years in the same house will not be easy

_RichOBoyleHOST> it seems to me that "once a CG...always a CG"

[Thumper1] very true Rich

_RichOBoyleHOST> i dont understand Boyd? you are moving out?

[JimMack] it really frustrating - I've asked them to look for nursing homes in case he needs one-issues like where, how close to each other, visiting them to look at how they are, investigating through state regulatory agencies etc. but they make a few phone calls and them drop it!

[boydclan] We want them to move in with us, we have a new apt on the house just for them

_RichOBoyleHOST> Thump....I host this chat every other Wednesday...but will probably make it EVERY wed in a month or so

[Thumper1] ok.... I will try to drop in as I can

_RichOBoyleHOST> problem with them is they really don’t care...based on what you have told us

[boydclan] has anyone ever moved a relative to their home

[Thumper1] yep...moved Mom in here

_RichOBoyleHOST> but giving small EASY projects is a possible approach

_RichOBoyleHOST> i have an article on "Moving In"...have you looked at it Boyds?

_RichOBoyleHOST> Jim and his dad live together

[boydclan] no I have not it may help my two daughters deal with it

[JimMack] What's disappointing to me, is that their lack of doing anything for him, also means they don't care about me either.

_RichOBoyleHOST> it is in the home care channel...feel free to send them a link to it....

[Thumper1] Boyd, it is very important to furnish the bedroom with many familiar articles

_RichOBoyleHOST> you're right Jim...that is a sad and painful realization

[boydclan] teens keep too much in,

[JimMack] that's what really hurts me

[Thumper1] I know, Jim...my relationship is very strained with my sibs as a result of their actions

_RichOBoyleHOST> and inactions

_RichOBoyleHOST> do you have close relatives like aunts and uncles, Jim?

[Thumper1] well, folks, I must be going...take care everyone and have a good night

_RichOBoyleHOST> thump...thanks for coming by and helping out

[Thumper1] no prob Rich

[boydclan] siblings need to be kept informed, even if they do not want to hear it. You will have less regrets

_RichOBoyleHOST> thats a good point

_RichOBoyleHOST> ya hear that Thump!

[Thumper1] ok..will do and thanks again

[JimMack] being that my Dad is 94 my aunts and uncles are in their 80's. One who lives nearby just turned 90. But I'm not sure they be able to accommodate him.

[Thumper1] I tried that approach, Boyd...didn't change things

[boydclan] distance helped my deny, however the truth brought me back and I am thankful for honesty

_RichOBoyleHOST> Jim, even if you just have them close by to tell yourself that some members of your family are close and loving

[Thumper1] nite folks

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_RichOBoyleHOST> Boyd...have you made any preparations to move them in?

_RichOBoyleHOST> spoken with them...spoken with your family in the home?

_RichOBoyleHOST> do you have kids living at home?

[boydclan] we are ready to move them however my mother in law has had a turn over the past year

_RichOBoyleHOST> are you capable of handling her medical needs?

_RichOBoyleHOST> that should be a major consideration

[boydclan] we are willing since they mean so much to the kids. College age daughters

[boydclan] her health, we have found respite for him if needed

[JimMack] thanks Rich-it's nice to be able to talk with someone who listens. I'll follow up with the web site to "tune in" in the coming weeks. Thanks again.

_RichOBoyleHOST> you will all be active in this

_RichOBoyleHOST> you're welcome Jim....

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[boydclan] sorry I came in late

_RichOBoyleHOST> I highly recommend the article on "moving in"

[boydclan] your newsletter has been a great help for many in the local support group.

_RichOBoyleHOST> it is a very practical and on-target approach

[boydclan] where do i get it

_RichOBoyleHOST> i am so glad to hear that

_RichOBoyleHOST> go to the home care channel on this site

[boydclan] ok this is my first time on site

_RichOBoyleHOST> really?

_RichOBoyleHOST> Please let me know how you find it....

_RichOBoyleHOST> i think you will find a wealth of info....esp in the home care channel and the AD channel

_RichOBoyleHOST> It has become a HUGE site, so please come back a few times

_RichOBoyleHOST> what other issues are you dealing with?

_RichOBoyleHOST> I will post this transcript so you can read the earlier discussion

[boydclan] we got kick off. thank you I will look for the next topic

[boydclan] signing off

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_RichOBoyleHOST> good night and see you again soon

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