more public awareness - Alzheimer's Disease & Dementia Message Board

mentalmum08 · 02-19-2009, 08:04 AM

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 ***** 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

Martha H · 02-19-2009, 10:43 AM

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!

Love

martha

Gabriel · 02-19-2009, 11:05 PM

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

caringsister54 · 02-20-2009, 03:30 AM

deb

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.

Your
CaringSister54

mentalmum08 · 02-20-2009, 05:24 AM

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