ALZwell Tonight -- May 11, 2000


ALZwell Tonight discussion group
May 11, 2000 9:00PM to 10:00PM EST
Topic: Being Prepared

[susanr111] who do you care for mimi

[mlml11mlml] my husband

[susanr111] Have you been caring for him long?

[mlml11mlml] I'm new to this - he was diagnosed the beginning of year

[susanr111] my name is Susan and I was a caregiver in my home to my M-in-L for over 5 years. She was an Alzheimer's patient - and a very difficult person to care for.

[susanr111] I learned a lot of things by making mistakes and listening to others mistakes and solutions and am here to share them.

[mlml11mlml] hi

RichOBoyle> mimi...I am the founder of this site...a journalist and long-term care volunteer

RichOBoyle> these discussion groups start off slowly, but there is always a great sharing of wisdom and support

[mlml11mlml] I used to work for a radio station, but now i take care of my husband

>> Annette1 has joined channel #XC.1993632

[susanr111] I actually received a number of emails from caregivers this week who said they'd be coming - unfortunately with caregivers their time isn't their own.

[susanr111] Hi Annette

[Annette1] hello

[mlml11mlml] I really don't know where to start and what I'm suppose to be doing

RichOBoyle> hi Annette and welcome to ALZwell Tonight

[susanr111] A diagnosis is very important. If the doctor says dementia, push for tests to get a diagnosis. Dementia is a set of symptoms, not and illness or a disease and many insurance companies won't pay related expenses of symptoms - they want a bottom line diagnosis and without it, the insurance problems can become a nightmare.

[susanr111] Annette - are you a caregiver?

[Annette1] yes, my mother who is 81 lives with my family

RichOBoyle> mimi...was he diagnosed with "dementia" or "AD"?

[mlml11mlml] dementia.. I thought that meant he had Alzheimer’s

[Annette1] Susan, are you a caregiver for someone with ad?

RichOBoyle> Alz is a type of dementia...albeit the most common (about 80% I think)

[susanr111] Annette - has she been living with you long? My M-in-L lived with us for about 5 years.

[mlml11mlml] I don't have anything, no pieces of paper, the accounts are in his name too

[Annette1] We moved her out of her own home 2 1/2 years ago. She went back and forth between my sister and me for awhile and now has been at my house since 2/99.

[susanr111] mimi - One of the things I suggest as early as possible is to come up with the money for 1 hour of time from a local elder law attorney. Be sure to go prepared with all your questions and paperwork to get the most for your money. If you can't afford it - go to your local Office of Aging will help you with a Durable Power of Attorney and a Living Will

RichOBoyle> annette, did you have problems with moving her back and forth? adjustment, confusion, balancing act?

[Annette1] Susan, where is you mother in law now?

[Annette1] Rich, when the moving was going on, she was not as bad as now, but was never happy with where she was.

[susanr111] My M-in-L passed in 1999 - she had diabetes we couldn't get under control, was over weight and started having strokes.

RichOBoyle> most elders prefer to remain independent and stay in their own homes

[Annette1] My mother is healthy as a horse --- from the neck down. Not even a cold this winter.

RichOBoyle> susan was a 24/7 caregiver for several years and brings that wisdom and knowledge with her

[susanr111] One of the things I hear the most form caregivers is that their loved one wants to go home. This happens even when their in their own homes! Apparently what they really want is to go back somewhere they think things will be all-right

[mlml11mlml] where do I go to find help

RichOBoyle> mimi...what are you looking for in particular?

[Annette1] That sounds familiar. The grass is always greener . . . My mother has not recognized me since March 99. Constantly calls people to ask where I am so she can go to my house.

RichOBoyle> mimi...there are numerous state and local resources available...but it can be a challenge to go it alone

[Annette1] Does anyone have experience with having a companion come to your home?

[susanr111] annette-SHe sounds healthier than me.. but that can make it harder to deal with them. trying to force them to understand they're ill just doesn't work!. If they are caught early enough, they may be able to understand, but my experiences show that many patients with A.D. are unable to acknowledge the disease, often the ability to see that something is wrong seems to go first.

RichOBoyle> mimi...what are your immediate needs?

[Annette1] So true . . the irony is that up until about four years ago she was the head nurse on the alz unit at a nursing home.

[susanr111] Because of insulin shots, etc. i couldn't leave her with anyone, but we did have a teenager come for an hour twice a week to entertain her, came over like she was her friend - boy she loved that. I would sneak off for a hot bath, et. My husband made me use that time for myself. It worked great

[mlml11mlml] any kind, people coming in, support, elder lawyers...

RichOBoyle> that’s a great idea did you find the teenager?

[susanr111] You can find your nearest chapter of the Alzheimer's Association here: You should contact your local law enforcement department and ask them about any ALzheimer's programs they have like a wanderers program.

[Annette1] I need someone to stay here when I have an appointment or we need to go and do something fun as a family.

[susanr111] I went knocking on doors in the neighborhood and introduced myself (we'd only been here a year and we're in the country. I explained I was looking for a cheerful teen and would pay well and provide snacks... it worked

RichOBoyle> yeah...find your nearest local ALZ Assn chapter...they have a lot of info on local services, etc

[Annette1] You would really have to trust the person.

RichOBoyle> there are several directories of providers, lawyers and services...I recommend


[mlml11mlml] thanks, I'll look

RichOBoyle> you can also check each of the channels on this site...."Casey's Top WWW Picks" usually contains a link to a specialized directory of lawyers, etc

[susanr111] I got out seldom, but usually it was when home health came. Home health can't come all the time or for long, but anytime there's a problem you can ask the doctor if he'll send home health and for a few weeks you get bathers, a nurse, a social worker to evaluate the home situation, etc. and they tell you go!

RichOBoyle> I suggest that you go through a friend, family or neighbor for a part time’s often a good idea to ask for people who have nursing or long-term care experience

[mlml11mlml] but how can I make things better for him

[Annette1] She does not any help with feeding, bathing, etc and in fact wants to go everywhere that I go.

RichOBoyle> mimi...quality of life is so important...for both of you

[susanr111] There are lots of things to do around the house to make life easier for your loved one and yourself. Making sure they're rails for those who are still ambulatory - they can forget to move legs sometimes or how to get off the toilet and having the rails to help you get them up is real handy and comforting to your loved one.

[susanr111] You should keep a walker on hand also - they are the best for helping pull someone out of a chair or off the floor when you can't lift them yourselves - especially since they can become so awkward.

RichOBoyle> there are also many activities that you can do with your loved one...from singing and dancing to raking leaves

[Annette1] Dusting furniture can take up a lot of idle time.

[susanr111] Annette - I went through that the first years, and since I live in a small town I took her to the grocers and put her behind a shopping cart. I talked to the store manager and he told the employees about her and they humored her well. It was a unique outing.

RichOBoyle> depending on his level of dementia...there are many things to do.... sharing time with grandkids or family

[susanr111] mim - Removing mirrors and pictures from the walls is usually a must my mid disease - they can't identify them and often think they're real people or scary things. This is also why so many A.D> patients even ones who seem OK to the casual observer can't watch T.V. They can't relate and they can't collate the flow of information.

[mlml11mlml] did you ever feel overwhelmed?

[Annette1] Has anyone had siblings that will not visit or call?

[susanr111] My husband at one other relative left - his brother who lives 5 hours away. He came once the first year and twice in the next 4. First he said there wasn't anything wrong with her and she just needed stimulating. Then he said he couldn't face the visit...

RichOBoyle> too often the CG (caregiver) waits for too long before asking for assistance and respite

RichOBoyle> waiting until you are overwhelmed is TOO LATE

RichOBoyle> tap into whatever resources -- family, friends and professionals -- early on and ask them to do a little part

[Annette1] My closest sibling visits once every three months. It might be easier to be an only child.

[mlml11mlml] his relatives are dead and mine are hesitant to visit.

RichOBoyle> many CGs find that their circle of friends shrinks -- people fear seeing a person with AD...Yes, it makes the CG journey longer and lonelier

[mlml11mlml] what's the hardest part?

[Annette1] Does Medicare or Medicaid pay for a companion (non-medical)?

[susanr111] the hardest thing for me was what I call suppressing the self. This is the sometimes uncontrollable urge to make them understand, prove you're right, disabuse them of their silly notions, win an argument, etc. All things that are impossible and just make the situation worse for all.

[susanr111] Medicare doesn't - I don't know about Medicaid, though I know MediCal (California) doesn't either.

RichOBoyle> Do you have Medicaid coverage, or just Medicare?

[susanr111] The other thing that was so hard was finding ways to get her to let go of some idea. My M-in-L decided that her doctor had told her she was going to be dead by January and since XMAS was over, he was obviously wrong and a bad doctor. She refused to go back. When we tried to dissuade her she dug in, only remembering her story, and convincing herself it was true. We had to let it drop and eventually she forgot. In the meantime, we took her to another doctor saying it was fine.

[mlml11mlml] Just Medicare, but he has a secondary insurance policy, no long-term care insurance.

[Annette1] I have thought about the cost issue: If you have to pay for so many hours of home care at some point this could add up to the cost of a nursing home?

RichOBoyle> Some states provide personal care services through Medicaid, but it varies by state

[Annette1] I will have to check into Kansas.

RichOBoyle> in the Community Center, there is a "Neighborhood Network" with links for each state....

[Annette1] thanks--I just found this site yesterday and have not seen it all.

[susanr111] If you live in California once their assets (not including house if you're their spouse living in it too)are down to 2500.00 they qualify for MediCal and it covers convalescent hospitals if ordered by dr. One thing I learned though is that you must keep good records. After they die the state asks for accountings of any estate and bills back. It also protects you to save stuff if it's a parent to show you didn't squander any funds they had.

RichOBoyle> there is a ton of info...I suggest you sign up for the free will update you on discussion groups and new articles

[mlml11mlml] He's up, sorry, I will look for another chat you have been very helpful.

RichOBoyle> your welcome mimi...goodnight

[Annette1] I went to a support group yesterday and the moderator handed out poems from here

RichOBoyle> some of our mentors are wonderful writers and poets :)

[susanr111] yes, the site is definitely growing and offers good info

[susanr111] You mentioned earlier that you were a journalist, which explains the quality of the content

RichOBoyle> information and education are so important...

RichOBoyle> but the support that experienced CGs like Susan provide is the most critical

[Annette1] Susan, why are still interested?

RichOBoyle> thanks Susan...I write some of it...but I am also an editor and work with freelance writers to create new knowledge also

RichOBoyle> Susan has created one of the most useful ALZ sites on the net...

[Annette1] I am so glad - it is not always easy to get to the library.

[susanr111] When my M-in-L came to live with us I needed help and support. The only support group locally was 3 women over 80 caring for spouses - I was 35. I started a web site for support, this was 1995 and there just wasn't much on the web. Now I do it for my daughter and someday grandchildren. I encourage all to make sure their loved one has an autopsy, to take the genetic test and participate in all the studies they can

Annette1] It sounds like you are truly devoted.

RichOBoyle> I find that many former CGs stay involved because it helps them to share their wisdom and it helps the grieving process

[susanr111] well - I started it for myself and now it' too hard to walk away - I get hundreds of letters a week, etc.

[Annette1] I told my aunt about this site. She put my uncle (my mother's brother) in a nursing home last year.

[susanr111] and I wasn't a perfect caregiver - I don't think there's any such thing, so may things I learned the hard way, and unlike my kids, caregivers seem to learn from others mistakes..

RichOBoyle> many people think the NH is the end of the can (and should) stay involved in their care and life

[Annette1] I don't like it when my kids see me being disrespectful and generally losing my patience with mother.

[susanr111] They live there though, and most kids are pretty perceptive, I'm sure they see the situation as it is. if not now, later they'' respect you more for taking on what I think is one of the hardest jobs out there.

[Annette1] I just thank God that they are old enough to understand what is going on, 14 and 15.

RichOBoyle> make sure you are aware of yourself and actions...know when you are just stressed and overwhelmed...and when you may be abusive and possibly hurtful

[susanr111] This is it for me, I'm pacific coast and haven't served dinner yet, my husband keeps walking by the open door like a circling shark.

RichOBoyle> susan...thanks for a great session

[Annette1] I think that I get the worse when I waste time arguing and trying to make her believe something.

[Annette1] Yes thank you Susan.

RichOBoyle> annette, please join us in two weeks for another discussion group

RichOBoyle> also you might want to sign up for the free newsletter for chat schedules and new articles

[susanr111] bye - oh and arguing just doesn't work it doesn't work - they will remember the fight and their opposite stand only and are incapable of reasoning through your explanations. It just frustrates.

[Annette1] Rich, do you know how they handle lost things in a nh? Like dentures, clothes, etc that could be hidden or thrown out? Surely they can not be watched every minute.

[Annette1] Do you think that it is true that most alz patients are at home?

RichOBoyle> take a look at the Residential Options Channel...

RichOBoyle> there are several articles on "Living in a NH"

[Annette1] ok

>> mlml11mlml has left channel #XC.1993632

>> susanr111 has left channel #XC.1993632

RichOBoyle> more than 80% of the people using this site are caring for a loved one at home

RichOBoyle> but as the disease progresses, many people move first to assisted living and then nursing home

RichOBoyle> every person with ad is different

[Annette1] We will continue like this until something drastic happens.

RichOBoyle> and every family situation is different

RichOBoyle> you are on the right track...continue to visit your real-time support group

RichOBoyle> you are also a welcome member to our online community

RichOBoyle> dont wait for something drastic...preparation is crucial

RichOBoyle> please stay in contact with us here...and browse through the site

[Annette1] thanks - i need to tell my brothers and sisters about this site too

[Annette1] I was thinking of something drastic like if she becomes violent or has a fall or starts a fire.

RichOBoyle> you can subscribe to the newsletter, or ask them to as well (its free and it is easy for me to keep you informed)

RichOBoyle> you should be concerned about things like that, but you can be prepared....

[Annette1] Does the newsletter come snail mail?

RichOBoyle> there are several articles on home safety in the Home Care & Independent Living Channel

RichOBoyle> it is emailed every 2 weeks

[Annette1] then I will sign up for sure

RichOBoyle> best of luck to you annette...and welcome to our community

[Annette1] I appreciate your time --

[Annette1] bye for now

RichOBoyle> you're very welcome...goodnight

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