Hi all, My name is Sandy.

My stepdad passed away 5 years ago and we've been trying to re-orient my Mom into the "real" world. "He did everything for her," she says.

And he did, so much so that we thought her problems were all because she needed to re-learn things that he had done for her. It just seemed that no matter what we tried to get her to do, she would do it for awhile then regress. Very frustrating.

We noticed little things over the last 5 years, couldn't pay her bills, forgot how to drive, can't make her own doctor's appts, etc.

So we've been on a 5 year quest to re-teach her.

The memory problems finally got so bad that I took her to the doctor and complained. She'd seen this doctor many times but never for memory.

He gave her the MMSE and she scored 9. I thought I'd fall off my chair. I couldn't believe her responses to such common things.

Now, I'm even more surprised as I've hunted message boards for the last 3 days to catch up on all I've missed with her condition. I feel guilty for not having recognized it for what it was sooner.

I feel like I've had a curtain over my head and someone lifted it. So if I ask dumb questions, be kind. I'm a dry sponge. If you feel like telling me anything...........please do.

My brother and I spoke this morning and realize we have to make drastic decisions and all within the next few weeks.

She lives alone during the day and an adult grandson comes after work, but we know that that is no longer acceptable.

I wish I had seen it sooner...............

Sandy

Sandy--there are "no' dumb questions. We are all learning. We may not have the answers to all your questions, but I have found that this board offers tremendous support. I am a "newbie" too.

How old is your mom? And did the Doctors say exactly what she has? Just curious.

We are here for you--so ask away.

Good thoughts for today, Linda

I'm 58 and my Mom is 79.

She was married to my step dad for 10 years and they traveled a lot. We didn't see her on a daily basis. So I really think, now, that she had a lot of those symptoms when he was still alive but he just compensated for her and we didn't notice it.

The doctor told me dementia. I was so shocked, I didn't even know what to ask. I did ask if it was Alzheimers and he said it could be. She's in later stages though, and they don't usually test because you can't go backwards.

They started her on Zoloft and Aricept for 30 days, then go back to the doc. So I'm keeping a list of things I need to ask on the return visit.

I'm just totally scared! My mom and I were never close and this is gonna be really hard if I take her in with me. Yet, my other siblings are both brothers and I know they won't take her in.

Sandy

Sandy the first thing the doctors did with my husband is aricept, namenda and then lexapro, the reason I asked what your mom has, is cuz I took my hubby to Mayo Clinic and he did not have AD so they actually said the aricept and namenda could do more harm then good, plus it was a lot of money per month so we took him off that however I keep him on lexapro, anti depressent--that is good.

It is diffiuclt to actually know for sure what they have, I am guessing at her age it is probably AD but you never know.

Yea you have a lot of decisions to make, it sounds like she probably has had some kind of dementia for a while, and probably should not be living alone, that again is a guess on my part, but my hubby is only 56 and truly can not live alone, so you need to talk to your siblings and figure that part out.

Linda,
Yep, the doctor gave me a 30 day supply of Aricept, to see if it would help, then he'd give a prescription. He didn't appear to be very hopeful though. I got the impression he did not expect much from it.

You know, it just seems crazy now, but in Feb we were at the emrgency room 3 times. A stomach pain. Had the whole round of test, cat scans and all. She always got better as soon as she got the IV. Finally, the third time, the doc said it's almost like she isn't eating..............

Last night I get a call from the Police Dept that she was roaming around her place at night and set off the alarm system.


I'm just wringing my hands.........One emergency after another. I can't believe that I just didn't see "it" before now. But I was taking her at her word, "she says she eats, she says she sleeps, and on and on," until I was around her more than once every two weeks. Now, after reading the boards, so much seems obvious.

Does AD stand for Dementia?

Sandy

Sandy, nope AD is Alzheimers Disease--shoot probably spelling it wrong.

Ok before I go into anything else I have to say one thing to you----you are beating yourself up for not recognizing AD in your mom--that is soooo wrong.

She was married and then lost her husband, everyone would think she was in grief and a little confused---it is normal. The one thing we all do is put ourselves in guilt. Look at these boards, we are the queens of guilt, But we do recognize what we are doing and compensate for it. Please do not beat yourself up.

Next, yup men are terrible at caretakers--not sure why but they are, but why should you shoulder the burden of your mom alone, talk to your brothers and see what they say. But I will tell you she probably should not be living alone. If you have the money, put her in assisted care--it is great, I had my mom in it ---she loved it. Not at first, but eventually, she told me she felt like the Queen of England.

If you do not have the money then it is nursing home care, but also not bad, medicaid will pay for it. There are some great places out there.

Anyway again--good thot's to you, Linda

Ahh. I should have thought of that AD Alzheimers Disease.

The doctor said he didn't know and at her stage, it really didn't matter.

Both my brothers are single, so they're pretty much out of the caretaking since they have to work.

I'm an Ebay Seller and home all day, so sometimes I don't think they realize that I work, too. It's just that I'm my own boss. Still, it's work and I will have to continue working even if I have her with me.

You know, I was checking some websites today about Assisted Living and was so surprised that medicare doesn't help at all with that. I know she wouldn't be happy in a nursing home now, she's too aware of her surroundings. And, then, I have to wonder if her money will hold out.

Just so many questions???????

I have to stop for tonight, my eyes are so tired! lol!

But I love this board and will certainly be checking it tomorrow.

Thanks so much for all the help and kind words about guilt. I needed to hear that.

Have a great evening!

Welcome Sandy !!

Sorry I didn't reply earlier, I made a concious effort to stay out of the house all day today and keep out of MIL's wrath, whilst BIL had some quality time with her.

It's raining, he can't do any work .. so he may as well keep her company eh? LOL

It's A HORRIBLE time ... but, I agree with the girls, do not beat yourself up. Her progression will not be able to be measured in pockets of time. Some weeks, you'll think you've imagined all the bizarre behaviour, other weeks, you'll want to put her away ... it's all part and parcel of the beast of AD ......

We vent, we cry, we yell, shout and scream in here .. because HERE you will find sympathetic ears, cameraderie (sp?) and honest opinions and even some brainstorming ........ sorry you have to be here, but I welcome you with open arms.

Hugs
Sally

About paying for care: Medicare won't pay for a home health aide either. My family is paying for the 30 hours a week out of their own pockets. Only Medicaid pays for it, but to get into Medicaid you have to have assets worth less than $2000. If we put Mom in some kind of custodial care, her own assets would soon be used up. But then, before Medicaid would kick in, she would have to have waited 3 years since transferring a piece of property she was part owner of. Actually she signed over her 1/4th of her parents ancient farm in the Catskill Mountains to her grandson, Bill's son, in November. But 3 years have to go by before Medicaid will not consider that 'her' money, e.g. force the grandson to sell it and use that money up for her custodial care. This is the main reason why Bill and Anna want Mom at their house - to protect their son's interests. He is a hunter and outdoorsman when off work in the big city, and although the farm is rotting away and the buildings worth nothing, he camps out up there for hunting weekends and summer vacations with friends. Other extended family members also use it for that purpose; it is to primitive to actually live in - No flush toilet! no elecricity - that's how my grandparents lived the last third of their lives after immigrating from Europe..

Yet Mom is no way 'rich'. It's sad the medical system is so harsh on in between people, not rich, but not dirt poor ...

Hope you work it all out. Having an AD patient in your home is really really really hard. I thought I could cope, but I can't. Just now Mom knocked over the enamel pail under her night potty stand. I heard the clanging from here, 2 rooms away. She did not come out. I assume she went back to bed. In the morning, or when I get hme from school, there will be a mess for me to clean up. I have layers of newspapers and a plastic mat under the potty chair ... after earlier 'accidents' caused the floor finishing to dissolve, leaving several light spots on the dark wood floor. Urine is acidic! I can smell the mess from here, but that could also be my imagination.

Mom may also try to clean it up herself later, when I am out. Often her efforts are inadequate, and she is so confused that she may put the wet newsapers back again.

This is just ONE small example of living with an AD person. Good food is thrown out, a blanket disappeared, she wears impossible combinations of clothes. I recently threw out 'favorite' clothes while she was at my sister's .. a white blouse with a huge mustard stain on the front. (part of this is also her near blindness, but one used to be able to day don't wear that, it's stained. Now, she reacts with annoyance: it is NOT stained! I looked!)

I could go on and on but I already have!

Love,
Martha

Love,
Martha

You are so right, Martha. I was searching anything I could find on the internet about assisted living, nursing homes, and home healthcare. It totally surprised me to see how little Medicare or Medicaid would help.

That's where my Mom is too. Not rich, but not poor. She owns her home and has a large IRA, and from what I could find that would have to all be gone before there is any assistance. How sad that is after years of their saving.

I so appreciate everyone's help and nice welcome. I can't believe how educated I've become in so few days, and can hardly believe how "in the dark" I was about this.

From reading some of the messages here, I can tell you, "caregiver," has taken on a whole new meaning. You guys are pretty great and loving people!

just thought i'd jump in here...

sandy, you should definitely go to an eldercare attorney. we recently did and i think we were able to 'save' some of my mom's money. wasn't much, but i hate for the state to get it all. she had an IRA which was transferred to my name....how it works here is like this: for every $4300 transferred to me, there will be a one month penalty period where she will not qualify for medicaid. they are allowed to look at your moms financial records for the last 3 years but that doesn't necessarily mean she won't qualify for 3 years.

martha - i wonder if your mom will be eligible sooner than 3 years - just b/c the state can look back for 3 years doesn't mean she'll be disqualified for 3 years. if the property transferred to your nephew (?) was worth, say 100k, i think there should only be a 23 month penalty. it's complicated, but i think that's accurate.

and what's up with male caregivers????? i went to pick my mom up for church sunday - she had on sweat pants that were rolled over and over at the top b/c she's lost so much weight....so they were highwaters. no socks, tennis shoes and a filthy sweater. ????? my stepfather was sitting there and got real anxious b/c we were going to be late since i had to change her clothes!!! he thinks she takes care of her hygiene, too....doesn't seem to notice that she's using the sponge from under the sink to 'spot' wash....or that she hasn't washed her face in what seems like weeks....or that she's actually in the bathroom trying to smoke a Q-tip b/c she thinks it's her cigarette...???? i'd blame it on his age,,,,but i don't think that's it!!!! he still 'argues' with her regarding facts and logistics!!! i never lived with him (they married after i left home) so we've always been sort of politeish with each other. but i've got him trained in a pavlovian way now....everytime he says something 'wrong' i slowly walk into his field of vision and he stops talking!!! i love it! i bet if i ever get married i'll hope it will work with my husband, too : ) but really, how could they be married for 20+ years and he still doesn't understand her psychology at all??? b/c the things that upset her now are still the same things that upset her then - being corrected in his superior way. lord.

anyway, welcome to the board sandy....i'm glad you found us. i'm new too, but really appreciate all the wisdom here. i agree with the others - try not to beat yourself up....esp since this disease will ask the world of you. you'll need all the strength you can muster. i'm amazed at all that the other women here do to take care of their families, my mom doesn't live with me (yet?) so comparitively, i'm living in luxury. kudos to all!!!

You know, My mom had been asking for several months when we prompted her about an event or a person;

"How come I don't remember that......."
"How could I have forgotten that......."

I can see the confusion and fear and anxiety in her face. Till now, I've just said, "well, as you age, your memory isn't as good as it use to be."

Anything you tell her is forgotten as soon as it's spoken. She'll ask the same thing 2-3 minutes later with no memory of what you just told her. So I just tell her that to calm her for the moment.

She is taking Zoloft, but I swear, when I look at her it's like the old saying "a deer in the headlights." That's just how she looks.........terrified.

She asked me yesterday, "How come I wake up in a brand new world everyday. I have to start over, everyday." That just broke my heart.

So my question is, does that go away? Do they eventually not realize that they are forgetting?

Does that make sense?

Sandy

Hi Sandy,

I'm sorry to say, yes, they can forget they ever knew stuff. My mother forgot her favorite color was red, that I was her daughter, and a gazillion other things. My analysis is that learned skills go first (like how to operate the washer and dryer - Mom thought they were broken). Then recent memories sneak away, I became too old to be her daughter, then the pictures of 70 year old Dad could not be him because "that man is too old". She forgot everyday things like how to write a check, day/night, pronouns (ever try to converse without using the word "you"?). She mentally youthened until she was concerned that her mother didn't know where she was and that she'd be late for school. She'd lost touch with reality, but never failed to smile when she saw me and even when very debilitated and unable to complete a spoken thought, she could respond, "I love you too".

Early on, when she'd get upset about forgetting, I'd just hug her and tell her not to worry about it and that she was safe. I asked her doctor to prescribe and antidepressant and that helped her frustration. I did move her into an assisted living facility and that was the best place for Mom. I was so pleased with her care and the socialization did her good.

Mom had 2 annuities in payout and 4 that we cashed in to pay for her care (had we not, the company would have kept the remaining money when she died - check the annuity policies your parents have). Interestingly, Mom died just as the money was about to run out. The money lasted 2 1/2 years and she had good insurance as the surviving spouse of a company employee.

Glad you found us!

I wish you well - Barbara

That is interesting info, and I will pass it on to my brother. Yes,it's my nephew who got the property.

The fear and anxiety caused by knowing you are 'losing it' is terrible. They do know, for a long time, until it becomes irrevelant.

My sister in law's Mom died last yea rof AD, In the end she thought she was a little girl. She wanted to go home to be with her mother in Greece, which she had left over 70 years before. After being an angry and even violent patient, she finally calmed down and was known in the nursing home as sweet and docile. She sometimes knew who her children were when they came to visit her, other times not.

She had AD for about 16 years. It began slowly with undue suspicion, hiding money under rugs, thinking her Social Scurity checks had been stolen, accusing neighbors of having been in her house ...all of which is actually possible, but all together, very unlikely.

She lived with my brother and SIL for 14 years. then was taken to Florida to live with er son (yes, what is it about male caregivers - he gave up after a few months, yet kept telling Anna she ought to keep her at home ...) and then she went into a facility where she died in just over a year ....

My Mom is far from that stage. Hers is progressing slowly. I have heard that when it begins at a very advanced age, it moves more slowly. She was still 'pretty much OK' a year ago, became 'strangely forgetful' last Spring, got lost and confused last summer, disoriented in the Fall, and now cannot really tell people apart .. her conversation consists of telling you what X did when you know it was Y. Today while her aide was still here, she said Thursday they are having a barbecue at the Senior center. Mom explained to her that they cook outside, but serve indoors. Just now she said to me "We had a barbecue today! They cooked outside, but served indoors." I knew it was something that had not yet happened (this year) but because we recently spoke of it, Mom thought it had happened today. This explains why she can't take her own pills, change her clothes, bathe etc ..if she THINKS about it, she will later think she DID it. It is scary, awful and diffuicult to live with .. and also dangerous. Two enameled pots were burnt when I got home. One had remnants of oatmeal on it. I threw out all the oatmeal that needs to be cooked, all we have is Instant now ..but this AM she must have COOKED it, burnt it, and eaten it ...

Thank God she turned off the flame again ..or I would not be able to write this if the house had burnt down. Still the 2 other children say "let her be alone until 9, and when you shop and do washing on weekends . She needs that indepenedence." Yeah. Right.

What to do?

Good luck!

Martha

Oh my goodness.

This reminded me of a story that my mother told me years and years ago. I think I was around 10 years old when my grandmother died and we lived in another state.

Mom's sister lived near my grandmother and put her into a nursing home. I remember Mom telling me that the last year or so, my grandmother walked up and down the halls of the nursing home trying to find her baby.

She kept saying that she needed to "nurse" her baby.

I don't think they even knew about AD back then. In the 50's.