ALZ Well Tonight 6/14/00

ALZ Well Tonight: Ways to Make and Take Time for the Caregiver
Host Susan Grossman, 6/14/00 9:00PM to 10:00PM EST

>> bailheid has joined channel #XC.1993632

RichOBoyle> hi loretta...welcome

>> SusanG has joined channel #XC.1993632

[bailheid] Hello, Thank you so much for the book, I keep getting bumped

[SusanG] Howdy - sorry I'm late, had to switch to my husbands computer, mine kept crashing....

RichOBoyle> Hi susan...

RichOBoyle> i had some problems with my computer also

[bailheid] Hi Susan

[SusanG] b - are you a caregiver?

[bailheid] Yes for my husband in the early stages

>> syko has joined channel #XC.1993632

[bailheid] and you?

RichOBoyle> hi syko...we lcome

RichOBoyle> Susan Grossman is our host tonight

[SusanG] I've had a lot of experience caregiving for my M-in-L for 5 years (she has passed on now) and I also maintain the ALZwell caregiver site at

[bailheid] I forgot that already sorry

[SusanG] I'm sure you've heard all the jokes about caregivers and short term memory loss?

[syko] hi all...

RichOBoyle> is your connection tonight?

[bailheid] I think it's catching

RichOBoyle> we have all been having some minor problems

[SusanG] Hi syko - are you a caregiver?

[syko] seems to be working ok...ty

RichOBoyle> Bubblehead calls it Caregiver Dementia

[syko] yes susan,

[syko] i own adult family home for seniors

[syko] also known as seniro moments....

[SusanG] S - you must have a fabulous disposition, I can't imagine dealing with more than one patient with Alz

[syko] as many as 4 people....2-3 with dementia, Alzheimer’s

[SusanG] Might as well start on our topic tonight - feel free to discuss anything, but I'm going to try and cover taking care of the caregiver

RichOBoyle> sounds good

[syko] go ahead...

[SusanG] first thing to realize is how important it is for the caregiver to take care of themselves. It's amazing how many caregivers feel guilty about trying to have just a few moments. Don't ! if you don't take care of yourself you can't adequately care for your loved one. The stress level will be way to high and resentment will show itself in your dealings with your loved one.

[syko] hi

[syko] .

RichOBoyle> i wonder if some CGs, especially spouses feel that they have to do it alone

RichOBoyle> that it is wholly their responsibility and therefore they resist asking for help

[SusanG] Yes - sometimes there's the feeling if somehow you sacrifice all and do all it'll be fixed. Sometimes it almost becomes a penance.

[bailheid] ...

RichOBoyle> i was at a conference today and one speaker used memoirs of CGs to help the participants understand the emotions of CGs

RichOBoyle> and Penance or "making right" comes up often

[syko] ...

[SusanG] Looks like there's a problem with the chat posting correctly I'm seeing some ... anyone else?

RichOBoyle> i can see yours susan...and i have just posted a few

RichOBoyle> syko and bailheid and listening

[syko] .dont know what to look for....sorry

[SusanG] I'm seeing them now!

[syko] good

[SusanG] Taking Time for Me - How Caregivers Can Effectively Deal with Stress by Katherine L. Karr is an excellent book on coping and making time for yourself. I have an excerpt up here: if anyone is interested in checking it out.

[bailheid] yes I will

RichOBoyle> bailheid....are you able to take some time for yourself?

[bailheid] not really, we do everything together

[SusanG] There are some wonderful online resources that give lists, hints, tips etc. on making sure you make time - something that's so hard to do.

[syko] .

RichOBoyle> part of being an effective caregiver is to have a range of people who are skilled at specific roles or who can take on certain tasks

[bailheid] he does not need much help. I am worried about the future

RichOBoyle> do you have kids, relatives close by, colleagues from his employer, neighbors, religious?

[SusanG] You're doing the best thing - finding out about the disease, ways people cope and resources on the net.

[SusanG] You will find the entire caregivers handbook (1990 but still very timely) at this includes a very excellent statement on "You, the Caregiver, are very important", checklist for the caregiver (I will paste this in next), and a large section on Caring for the Caregiver including a Caregiver's Self-Rating Scale - an absolute must read!!

[bailheid] just my son and his family and when the time comes I hope he will help

RichOBoyle> it may be a good idea to acclimate him now...

[syko] .

[SusanG] b - It'd probably be helpful to start finding out what his expectations are and let him know what yours are

[bailheid] my problem is that I have not told him about his alz.

[SusanG] Here's the caregiver checklist: I am getting out/exercising at least once a week * I am getting at least seven to nine restful hours of sleep a night * I talk with or visit up to three friends or relatives weekly * I keep annual medical and dental appointments * I am taking only the medications as prescribed to keep up my health * My legal and financial papers, including wills, are in order and available * I have checked a new resource regarding caregiving each week

RichOBoyle> Also at the conference today was a very touching quote:

[SusanG] Is your husband aware that he has something wrong?

RichOBoyle> "Cancer offers the gift of time, its only kindness."

[syko] .

[bailheid] yes he doesn't ask questions even at the drs. yesterday

RichOBoyle> meaning that when someone has a terminal illness it gives you the opportunity to resolve issues

[SusanG] It's too hard to just tell someone and have them understand - has your son seen any of his decline at all?

[bailheid] yes

[bailheid] if he is away from home he is very bad

[syko] .

[SusanG] Then it's time to tell him - it's only fair to everyone, he might want to spend additional time in these earlier phases when he can still enjoy his father also. I know this is a personal choice, but I feel you need to give your son his own opportunity of choice.

RichOBoyle> we will have a guest speaker in our June 21 chat session: founding member of the Long Island Alzheimer's Foundation...she will speak on discussing the diagnosis

[bailheid] they are close now but nobody talks about his alz

[bailheid] I am looking forward to that

[bailheid] I am afraid he will get depressed

RichOBoyle> it is hard for families to start talking about things if they have not done it in the past

[bailheid] even the drs. doesn't tell him

RichOBoyle> but this is an opportunity for you and your son to resolve issues before your husband does not have the capacity to understand

[SusanG] The National Family Caregivers Association has a "top ten" list for caregivers, and this one seems appropriate. W hen people offer to help, accept the offer and suggest specific things that they can do. I add to this one - give them the opportunity to offer to help, to "step up to the bat" - they may need this themselves to come to terms with the disease.

[bailheid] thats something to think about

[bailheid] thank you

[syko] .

[SusanG] In the end - you are the caregiver, the one closest to your husband and the decision you make will be the one you feel best for him.

[bailheid] he is happy now

RichOBoyle> not discussing the problem makes it harder for you to ask your son to help...which WILL be necessary

[bailheid] I hate to bust his bubble

RichOBoyle> yes susan I agree with you

RichOBoyle> boy o boy Bailheaid....easy decisions? huh

[SusanG] Are you familiar with the caregiver bill of rights?

[bailheid] no

[syko] .

[SusanG] Well the third one is the one I think is useful here (I'll paste all if anyone wants) but here's the third:

RichOBoyle> please paste all if it is no problem

[SusanG] To receive consideration, affection, forgiveness and acceptance for what I do, from all my loved ones, for as long as I offer these qualities in return. To take pride in what I am accomplishing and to applaud the courage it has sometimes taken to meet the needs of my loved one. To protect my individuality and acknowledge my right to make a life for myself that will sustain me in the time when my loved one no longer needs my full time help To expect and demand that as new s

[SusanG] This is number one: To take care of myself. This is not an act of selfishness. It will give me the capability of taking better care of my loved one. To seek help from others even though my loved one may object. I recognize the limits of my own endurance and strength.

[SusanG] This is number two: To maintain facets of my own life that do not include the person I care for, just as I would if he or she were healthy. I know that I do everything that I reasonably can for this person, and I have the right to do some things just for myself. To get angry, be depressed, and express other difficult feelings occasionally. To reject any attempts by my loved one (either conscious or unconscious) to manipulate me through guilt and/or depression.

[bailheid] ...

[SusanG] They're by an anonymous source- but have been passed from caregiver to caregiver for years. They really make sense.

RichOBoyle> the core seems to be that the CG can set limits and has a responsibility to herself as well as the LO

[SusanG] Or himself - a lot of men are taking care of their wives now!

[syko] .

[bailheid] ..

RichOBoyle> syko...awfully quiet tonight :)

[syko] reading....

[syko] there is a different set of rules for care givers in AFH

[SusanG] Of course once we're all convinced taking care of ourselves and making time for ourselves as caregivers is important - next we should talk about the realities of making it happen. When I was caring I literally went years with out leaving the house more than once a month. My M-in-L had medical conditions that made it impossible to leave her unless there was a nurse/aide who could give shots and evaluate her diabetes, etc. I still made time for myself, but time in the home

RichOBoyle> any insights for spouses ?

[SusanG] S) Are these "rules" posted somewhere like these are? I'm always interested in both side of caregiving.

[SusanG] Well I hired a local extremely friendly teenager to play the part of a visiting friend - she usually said she was coming over to escape her siblings, chores, etc. and it made our house a refuge for her... a good excuse to sit with my M-in-L while I took a hot bath, went in the yard with a book, etc. Time for me.

[syko] have NO idea....susan

[bailheid] I like your last idea very much about the teenager

[SusanG] Also if you can start a routine before the later stages set it's easier to keep up the new routine instead of adding it later.

[syko] .

RichOBoyle> what type of routine? taking a few nights off? having a regular luncheon?

[SusanG] For me, Adult daycare was an occasional solution, though getting her acclimated there was a true nightmare! In the end, it was worth the forcing her to go until it became a routine. She believed she worked there and complained about the low pay. Instead of being a daily - we set up an occasional schedule where I called in advance to make sure they could handle he that day

[bailheid] even grandchildren

RichOBoyle> especially grandchildren...nice to have that connection with a grandparent

>> kaycasey has joined channel #XC.1993632

RichOBoyle> Hello kaycasey and welcome to ALZWell Tonight

[SusanG] Another interesting thing - don't know if syko does it, but a number of facilities leave beds open for a few days during patient turnover and will take in respite cases - They'll treat the patient like they're on a vacation with games and entertainment (like a cruise ship) while the caregiver rests.

RichOBoyle> or when the CG goes on vacation, etc.

RichOBoyle> yes I have heard of that

[syko] something like that...yes

[syko] hikaycasey

RichOBoyle> Hi kaycasey...we have been discussing finding ways for the caregiver to take time for her/himself

RichOBoyle> SusanG is our host tonight

[bailheid] Hi kaycasey

[SusanG] They even have started a few (not cheap) resorts that are Alz safe for the caregiver and loved one to go together without the worries. I've seen a number of articles on these places.

[SusanG] Hi - K - are you a caregiver?

RichOBoyle> could you forward one to me when you get a chance? I haven’t seen that yet

[syko] .

[SusanG] Sure - send me an email to remind me

RichOBoyle> I hope k isn’t having technology problems...if you get bounced out...come right back in kay

RichOBoyle> thanks sue

[bailheid] ...

RichOBoyle> kay you will get bounced out if you don’t type something every several minutes... type "..." if you just want to listen in

[kaycasey] Hi. I'd be interested in places we could go together. I'm not ready to go away by myself. My weekly outings for shopping and errands take care of that. I care for my husband (65 – Alzheimer’s - diagnosed at 61.

[kaycasey] Are there tips and techniques that help with automobile travel other than common sense?

[SusanG] Interesting enough - other places you could go together are sponsored by your local agencies. My local caregiver resource center yearly puts on a mini conference for caregivers including some classes, snacks, support sessions, etc. I could go to this because they also supplied care for the time you were there for your loved one (including activities you can do together if you chose) with qualified professionals. I hear now that many centers, Alzheimer's aid groups, etc. now

[bailheid] ...

RichOBoyle> One community member often takes her father for drives in the car up to the mountains...he used to love camping

RichOBoyle> just driving around is pleasant for him

[SusanG] For automobile travel it depends on the stage. Some tips are to take it in short bursts breaking up being in the car with trips through the car wash (this seems to be a common enjoyable thing for Alz patients) and staying in the same hotel chain if it's overnight. Same chain means familiar Look and Feel of place!

RichOBoyle> it is often a good idea to have a "travel bag" with you that contains clean underwear, shirt and adult diapers...

RichOBoyle> I guess it all depends on the stage of the disease and behaviors

[syko] .

[SusanG] Things to consider are car seat covers that pads can be slid in and cheerfully removed if wet without making a fuss that would kill the joy for all

RichOBoyle> kay...does he have any favorites that you are considering?

[bailheid] ...

[SusanG] We're getting close to the end for me and I had one more thought I wanted to share.

[kaycasey] Yes, the Texas Gulf Coast. He used to deep sea fish. We'll be dealing with some incontinence this time for the first time. any hints about how to initiate use of diapers, etc?

[syko] .

RichOBoyle> how about putting them on and pretending it is normal just like underwear

RichOBoyle> You can find a list of Adult Day Care centers in the Home Care & Independent Living Channel under "Casey’s Top Picks on the WWW."

RichOBoyle> deep sea fishing sounds like too many possible problems with sea sickness and bad weather

[bailheid] ...

RichOBoyle> bailheid...does your husband have trouble with traveling?

[kaycasey] Right, we don't plan to fish, just be with family and stroll the beach. I think he'd see the difference in underwear, but might try with "new clothes".

[SusanG] Another suggestion is to say that there may not be enough stops and it would be a safety precaution for both of you. When I started my m-in-l it was very hard and I finally ended up putting them on me to show her how?

[bailheid] we have a hard time in hotels finding the room

RichOBoyle> with an unfamiliar is best to stay with your LO as much as possible

bailheid] I like the idea about same hotels too bad we couldn't get the same room number

[syko] .

[kaycasey] Thanks for this helpful chat. Hope I can join again. Must go now.

RichOBoyle> Susan this has been an informative discussion...thanks!

[SusanG] Finding new locations is hard because they don't really remember what the place they're looking for looks like. It's real bad at hotels because we're usually in them in the evenings, after the sun goes down and sundowners sets in.

RichOBoyle> thanks kay. Please come back again

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