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more public awareness

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Old 02-19-2009, 07:04 AM   #1
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more public awareness

Hello everyone. Just fnished reading more replies to carinsister's thread. Liked the idea of putting up happier normal pictures of her mother at the "viewing". Gives me an idea? Just lately on TV over here we have had a couple of people famous in the UK come out and pour out their hearts because they have partners and close relatives who have Alz. I haven't put names down in case I get myself into trouble. There's also been a documentary with a famous author who has been diagnosed with EOAD. He also interviewed a cambridge professor who is experiencing the same. We have special nurses called Admiralty Nurses. They are to Alz. what Macmillan nurses are to cancer. Unfortunately there are only 60 for the whole uk, and it's basically a zip-code lottery. Have watched a dvd called sicko by micheal moore. It was a real eye opener as to how the US healthcare system works. It was frightening. I'm not being derogatory or anything, I just found it disturbing. Was up in Edin. last week. My mum just got out of hosptial after 5wks. She can't walk, feed herself, doubly incontinent. She rants and swears unintelligible words and phrases. My brother will still not put her into a N/H!!!!! He himself has just been diagnosed with type1 diabetes. He has neglected himself over the last 2 and a bit years. My ex sis-in-law wants to help look after her in my mum's own apt. My brother I think goes along with it incase it's a way of getting back together. I didn't post for a while, because I felt I needed to get things into a bit of perspective. Its hard because things change and shift all the time. xxx mental

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Old 02-19-2009, 09:43 AM   #2
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Re: more public awareness

You are right, there's a lot more that could and should be done, starting with research but not forgetting loving care by professionals.

Good luck!



Old 02-19-2009, 10:05 PM   #3
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Re: more public awareness

There are several celebrities here that have have ALZ and have made it public. When that happens there is a bit of a surge in publicity and then it seems to wean. Yes, there need to be more research and their also needs to be more care available.

I did find an interesting point in my search this week. Several local locked ALZ units have been close recently because the cost of operation for a good ALZ unit is more than a skilled nursing bed yet the reimbursement rate from medicade is lower. Therefore they can turn the beds into skilled nursing beds, spend less, and make more where as the ALZ units are not profitable.

So much more needs to be done but as complicated as the system has become and in the current economic situations I do wonder what will be done.

Love, deb

Old 02-20-2009, 02:30 AM   #4
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Re: more public awareness


I understand what you wrote but while they seem to be closing because they can make more money this way than that, it is up to them to fight for better funding. They have all the documentation and research.

But that also does not explain why if facilities get donations from various areas and people's social security, why do they then demand that families pay up front costs for care.

If I had the money, I know we would've forked it over but to deny taking my mother at all! -- because we couldn't give them this $280+ per day 'room and board' rate, was unbelievable. We told them that we would help in any fundraising activity that they may hold or do any reproduction of material they may need (my company has a wonderful print shop), that wasn't good enough.

I'm glad that God had a plan and that plan didn't include us dealing with them. I'm also glad that sister didn't have her home and found her gone on her own but I'm not happy with the 'crap' that they put people through at a time when they are under the most stress.


Old 02-20-2009, 04:24 AM   #5
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Re: more public awareness

Hello again,

Things seem to be about the same over here in the current economic climate. It will cost us about $5,000 p/m to place her in a N/H? When she went into hospital 5wks ago she was really ill. Nobody helped over the xmas vacation period. Pleas from my family fell on deaf ears. When our GP eventually came, he took one look at her and dialled an ambulance. At hosptial she wasn't even triaged! She was left this way for 6 1/2 hrs. Younger people with minor wrist and ankle injuries came and went in that time period. Update requests fell on deaf ears. The nusing staff were quite rude. They made us feel that our mother had no right to be in their wards. It is a problem acoss the National Health Service. It has even been the subject of debate on the BBC (a tv/radio brodcasting company funded by all licence payers in the uk. It's mandatory, and if you dont payup you can be prosecuted and sent to prison). Alz. suferers are being treated as second class citizens. To get help it's a case of one step forward, two steps back. My two daughters and I think that the UK is some kind of social-engineering expt.for the rest of europe. The govt. seems to be pushing and squeezing us to see how far they can be allowed to go before the peasants revolt. One old lady was left on a trolley in a toilet for 10hrs before her family kicked-off. Draw your own conclusions. If you have the money to go private it's a different ballgame. Rant over. Love to all xxx

Old 02-20-2009, 05:37 AM   #6
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Re: more public awareness

Hmmmmm.....such an interesting point you've brought up mm...and good thoughtful replies.

One must realize not all agreed with Michael Moore's fact most disagreed. However, the point you've brought up is acurate......."who REALLY cares when an older person is diagnosed with ANYTHING?"

Long ago, older family members were taken care of within the family because "homesteads" became the place all family members usually lived together. There used to be a respect given to Grandmas and Grandpas...Aunts and Uncles that has somewhat disappeared. Remember people saying someone was "senile"...or "old-timers-disease"? STILL hear that one; can't believe some people are not even aware of proper pronounciation!

I see more and more friends who are being touched by dementia/Alzheimers...(remember when they told me there are more than 60 types of dementia!) and it's a shame we all get caught up in a constant struggle with other family members, wrong (or NO) diagnosis, finding a safe environment...just so many things to distract us from what our loved one really needs and deserves!

In both inlaws my own Mom's case, even the churches that they attended many many, years deserted them! Such a percieved "burden" they become! Sorry friends...I do get to raving about this...

The absolutely wonderful facility Mom has been for 10 years is owned and operated by a man who lost his own Mom to Alzheimer's. His careful selection of employees...the homey atmosphere they've all a blessing to both Mom and us her family. We had to sell her house to support her care, but it was absolutely the right thing to do. Along with Dad's Social Security, we've been able to make it.

GRR...don't get me goin' on S.S....I am amazed how many of my kids at school get nice big S.S. checks each month because of a tiny "learning disability"....and I hear and see every day how that money is being used...fingernails, expensive jewelry, cigarettes, drugs, etc., etc., etc........GRR...

(sorry for that outburst) Both inlaws were in very different facilities...her an assisted living that was no comparison to my Mom....him in a medical facility. Each of my loved ones received varying care, but I do believe their caretakers did what was expected in each place. Perhaps that's part of it...what are the expectations in each facility......

There's just so much that needs to be addressed in this area....thanks for bringing it up mm.................Pam

Old 02-20-2009, 06:20 PM   #7
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Re: more public awareness

I agree with everything you said Pam!! I will add that the care in a facility is absolutely a direct result of the expectations.

The facility I worked with has received their 5 star rating in our new state rating system. It is a non-profit corporation that was started by a local church with a big dream. A few tireless individuals have worked for over 20 years to make it what it is now. It is the best.

The facility I just visited was actually a sister facility to the one Mom and Dad are in now and owned by the same corporation but, the differences were astounding. I firmly believe that goes back to the local management. I was impressed with the director of the new facility and her knowledge of dementia, those that resided there, and the facility operation. She answered questions for me that I have not been able to get answered in almost a year and a half at the other facility.

And I know what you are saying about SSI for minor childhood disabilities. I have seen parents beg for diagnosis. Yet a knee replacement for an otherwise very active 70 year old is denied because a date was typed wrong on the application.

I happened to be at the facility when the state omnibus was there discussing the need for additional ALZ units in this area. I did sit and talk with her a while about my search for quality care. I assured her it was ok to use my information in her plea to the state for additional funding. Many are trying but when they can't pay the bills now, who know what additional funding will materialize.

There are no easy answers but something has to be done...

Love, deb

Old 02-23-2009, 04:54 PM   #8
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Re: more public awareness

Just reading through this post.......
My mom was in the UK last week to see grandma, and I'm sure she saw the exact same program on TV that you did...she was telling me all about it, the "60" nurses thing rings a bell. When I used to hear my Uncle saying that there wasnt any decent places over there, or that the doctors just didnt care, sometimes I would doubt that, and think how is this possible? But I read your post, and think he's been right all along......what a horrible thing to deal with, when the professionals dont even want to acknowledge these people?
My uncle often uses the words "isolated" and "alone", and I think I understand why. Definitely, there are a lot of places out there that need help, and things need to change.

How is your mom doing now?

Love, Caroline xo

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