Alzheimer’s research; some potentially good news

[Jersey mike]

While it’s not a groundbreaking procedure, hopefully it’s a good step in the right direction and will become a good starting point for the future. There’s still a lot of road to travel with this disease and maybe this blood test will give people and doctors time for a treatment plan of some type.


https://www.foxbusiness.com/lifestyle/blood-test-diagnose-alzheimers-sale

[baldo]

While it’s not a groundbreaking procedure, hopefully it’s a good step in the right direction and will become a good starting point for the future. There’s still a lot of road to travel with this disease and maybe this blood test will give people and doctors time for a treatment plan of some type.


https://www.foxbusiness.com/lifestyle/blood-test-diagnose-alzheimers-sale

That is good news.....

[Patrick]

Thats good.Anything that can be help that disease in any way is a good thing. I know quite a few [ probably we all do] that have or have died from it, including my father.

I read quite a bit about it and it seems right now that they believe the brain needs fats to function properly. But there still seems to be no reason why some get it and others don't. Its a terrible disease, hard on friends and family.

[cookiedough]

the article said the 63 year old did a brain scan at a cost of 5K to find out she had the disease.   Not my cup of tea to spend 5K then get bad news as well.  double wammy. 

about 8 years ago they wanted to do an MRI on my mom to see how bad her brain is with altzheimers this was still when she had her mind enough to know she said NO and was able to speak for herself.  NOW, is too far gone but what would it have done differently to find out how far gone her brain cells are some 8 years ago?  One Dr. suggested she has had it 12 years some 10  years ago but do not believe it they did tests on her in the psychiatric ward that most adults with her 8th grade education would not have gotten to begin with. 

Amazes me I have met in my mom's 3 assisted living places some very sharp 90+ year olds telling stories when they were very young and remember everything much more so than most any other adults could.  Either that, or they make it up to the point of believable to me anyways.   

[Jersey mike]

There is a big bridge that needs to be built for more help from the healthcare system/industry for those with dementia and Alzheimer’s. The unfortunate part is the diagnosis and gaining more insight into what happens to the brain as the disease progresses. The doctors my father-in-law saw tried different medications and different dosages which never seemed to help BUT since my in-laws lived alone it was difficult to get them to take their meds on a daily basis. Phone calls didn’t help and they lived 30 minutes away so daily trips there were out of the scenario also. Barbara worked from their home on Tuesday and Thursday and brought prepared meals to their house on Saturday and Barbara’s sister was there on Sunday to try and get the meds in them but it wasn’t perfect.

Getting back to the doctors, most of the time a visit concluded with “there’s not much we can do, the disease will just keep advancing” and also “you need to get affairs in order for their care”. So not much help in that regard.

Looking back Barbara and I should have been more assertive but it wasn’t easy, her parents were great people but steadfast in their wishes, especially not moving to a new home which would have made things so much easier to look after them. We have a senior community less than 10 minutes from our home which would have been perfect but we didn’t push and we should have. We tried for years through casual and strong conversation but the end result was always the same, NO.

I could go on for pages on the history of the decline of Barbara’s father over the years. I could probably write a book if I knew how on everything from the signs we missed, the time we lost in fighting with trying to get doctors to see the real issue to all his escapades. Just as an example, my father-in-law was a great bullshitter, sorry for the language but that’s the only way possible to describe it. He could BS his way through a cognitive exam better than anyone and my wife would take time to explain to the doctors what was going on and they would all say he did good.....very frustrating.

So anyway, this blood test may be a step in the right direction, but still more needs to be done as far as Alzheimer’s and dementia being cared for through programs as other medical issues are. The toll on family is exhausting both physically and mentally. Next to St.Jude Children’s Hospital, Alzheimer’s research has our biggest support.

[Patrick]

A friend died of it in his mid 60s. A good friend was recently diagnosed and put in a nursing home and has just turned 71. He knows no one and is very argumentative. His daily cost is $780. They'll be broke in no time.

It was pretty late when we finally figured out my father had it. My mother once called to come and help him put the battery in the lawn mower. I tried to watch him and talk him thru it. He couldn't do it and I couldn't figure out why at that time. And we were brought up in the auto repair business. He just kept regressing and the only person near the end that he knew was me.

[scooperhsd]

My MIL is on that road. Wife and me are doing what we can to get her credit cards / loans paid off, and we have pretty much taken control of her finances (and MIL was treasurer for her church for years - it really frustrates her that she just can't handle her own money anymore). Ar least she took care of getting longterm care insurance years ago.

[Jersey mike]

A friend died of it in his mid 60s. A good friend was recently diagnosed and put in a nursing home and has just turned 71. He knows no one and is very argumentative. His daily cost is $780. They'll be broke in no time.

It was pretty late when we finally figured out my father had it. My mother once called to come and help him put the battery in the lawn mower. I tried to watch him and talk him thru it. He couldn't do it and I couldn't figure out why at that time. And we were brought up in the auto repair business. He just kept regressing and the only person near the end that he knew was me.

There’s just so much to write, it would take hours but I completely understand and sympathize with your ordeal.

As for the financial issue I know the pain there. We were paying $12k a month. If he had fallen and broke a hip, he’d be fully covered for all surgical/hospital stay and nursing home care and rehab. When it comes to Alzheimer’s and cognitive care you’re on your own pretty much. Medicare kicks in after you’ve depleted all your money and the 5 years look back is crazy. I’m all for people paying their fair share but the difference between physical care and mental care is nuts.

[Jersey mike]

My MIL is on that road. Wife and me are doing what we can to get her credit cards / loans paid off, and we have pretty much taken control of her finances (and MIL was treasurer for her church for years - it really frustrates her that she just can't handle her own money anymore). Ar least she took care of getting longterm care insurance years ago.

The loss of the ability to perform tasks which were once a common thing is crazy.

My father-in-law was heavily involved in youth soccer here in NJ for decades. He was very well known. He was a coach, a scout, a trainer and on the boards of leagues.

When I first met him 28 years ago he knew the location of every soccer complex and training facility in the state and many in NY and PA. Just before he moved in with us 2 years ago he didn’t even understand the concept of the game. Trying to get him to watch a match on TV became an ordeal filled with questions and disinterest.

The loss is indescribable.

[Patrick]

A friend died of it in his mid 60s. A good friend was recently diagnosed and put in a nursing home and has just turned 71. He knows no one and is very argumentative. His daily cost is $780. They'll be broke in no time.

It was pretty late when we finally figured out my father had it. My mother once called to come and help him put the battery in the lawn mower. I tried to watch him and talk him thru it. He couldn't do it and I couldn't figure out why at that time. And we were brought up in the auto repair business. He just kept regressing and the only person near the end that he knew was me.

There’s just so much to write, it would take hours but I completely understand and sympathize with your ordeal.

As for the financial issue I know the pain there. We were paying $12k a month. If he had fallen and broke a hip, he’d be fully covered for all surgical/hospital stay and nursing home care and rehab. When it comes to Alzheimer’s and cognitive care you’re on your own pretty much. Medicare kicks in after you’ve depleted all your money and the 5 years look back is crazy. I’m all for people paying their fair share but the difference between physical care and mental care is nuts.

Yep. Back in 1999 I wrote the $7500 check every month. 5 yrs ago it was $11500/mo for JoAnn's aunt. Now our friend is paying $780/day. This is nutz ! Especially considering that the quality of care sucks.
People still think they can sign their house, etc over to the kids and all will be fine. They don't listen and are in for a big surprise.
Last week had this discussion with a friend. He has an insurance policy to cover such things of $27K and thinks it'll be good for 2-3 years of care and just signed the house over to his son.  He thinks I'm lying and got mad.

[VanCityValkyrie]

There is an interesting documentary about Nicotine that was just released, called "You Don't Know Nicotine". It can be viewed on a streaming site called "ibex" and you can sign up for a 10 day trial for free and watch it. Very interesting in my opinion and it also mentions alzheimer, parkinson and tourette...
Here's the link: https://watchibex.com/programs/ydkn

[cookiedough]

wow,  you guys paying well over double per month asst. living vs. me at 3800 mth.  I took my Mom out of the past asst. living home due to neglect and poor food and care more so but when the owners sitting behind an office chair in Chicago IL said over the phone the rate going from 3600 to 4200 I said to him consider this my 30 days notice taking Mom OUT of there.  He said then can do 4K but still 400 rate increase for worse care NO WAY doing that.  He wanted me to stay since one of very few having the funds (for now anyways) to pay private pay vs. Medicare am sure docks their mthly pymt. if broke to less than half of full pay am sure of it.    More money in owners pocket was NOT going to happen was a jerk could tell on the phone.  

I know I made the right call now knowing that the old place she was in has no one left needing employees ASAP and just found out from former employee there they only do asst. living basic care not special end of life needs anymore, probably because they cannot find anyone qualified to work there anymore.  

[f6gal]

wow,  you guys paying well over double per month asst. living vs. me at 3800 mth.  I took my Mom out of the past asst. living home due to neglect and poor food and care more so but when the owners sitting behind an office chair in Chicago IL said over the phone the rate going from 3600 to 4200 I said to him consider this my 30 days notice taking Mom OUT of there.  He said then can do 4K but still 400 rate increase for worse care NO WAY doing that.  He wanted me to stay since one of very few having the funds (for now anyways) to pay private pay vs. Medicare am sure docks their mthly pymt. if broke to less than half of full pay am sure of it.    More money in owners pocket was NOT going to happen was a jerk could tell on the phone.  

I know I made the right call now knowing that the old place she was in has no one left needing employees ASAP and just found out from former employee there they only do asst. living basic care not special end of life needs anymore, probably because they cannot find anyone qualified to work there anymore.  

Assisted living and long term care are very different.  In most cases, assisted living residents have a higher functional capacity than long-term care residents.  LTCs are typically more expensive; as they provide a higher level of care for those whose needs are greater than simple custodial care.

[cookiedough]

wow,  you guys paying well over double per month asst. living vs. me at 3800 mth.  I took my Mom out of the past asst. living home due to neglect and poor food and care more so but when the owners sitting behind an office chair in Chicago IL said over the phone the rate going from 3600 to 4200 I said to him consider this my 30 days notice taking Mom OUT of there.  He said then can do 4K but still 400 rate increase for worse care NO WAY doing that.  He wanted me to stay since one of very few having the funds (for now anyways) to pay private pay vs. Medicare am sure docks their mthly pymt. if broke to less than half of full pay am sure of it.    More money in owners pocket was NOT going to happen was a jerk could tell on the phone.  

I know I made the right call now knowing that the old place she was in has no one left needing employees ASAP and just found out from former employee there they only do asst. living basic care not special end of life needs anymore, probably because they cannot find anyone qualified to work there anymore.  

Assisted living and long term care are very different.  In most cases, assisted living residents have a higher functional capacity than long-term care residents.  LTCs are typically more expensive; as they provide a higher level of care for those whose needs are greater than simple custodial care.

am aware of that but guess WI is lower rates still since my mom needs all care not what I call 'skilled nursing' care which is more expensive still,  but she in wheelchair needs help going to bathroom, grooming,   all food cooked for her,  but she can eat on her own is about it, but with no other mental capacity for the most part.  Mom's favorite words are now 'I do not know' or 'what do you think'.    I guess that would be long term care she is at but still 3800 mth with some places in WI I checked out pushing 5K per month is still insane pricing for private pay for now anyways.  Some of those assisted living places I visited at the beginning 3 years ago were more like an apt. where you can come and go as you wish and those were around 3K per month still.   The few skilled nursing/rehab care facilities are like 8K per month and mom had to go there for 1/2 mth before I could find a suitable asst. living place of which when she fell down at home if she would have broken a finger even the skilled nursing facility would have been covered thru insurance but since she fell down NO broken bones, etc. her insurance would not cover any of the 1/2 mth there since is the way the hospital coded her stay stating she can go home still which was BS since she still could NOT walk after her fall.  I fought that one for months and told my mom in front of hospital staff I was talking to telling mom to come here and I will sprain her pinky finger then her skilled nursing place would have been covered thru her insurance.

[Patrick]

Assisted living in our area is about $4K/mo, at least the last I knew. The patient/client needs to pretty much take care of themselves and get themselves to the dining room, bath room on their own, etc.

[Jess from VA]

I realize that assisted living and long term care are expensive to provide, with buildings and facilities all code compliant, and trained personnel, and anything medical is expensive.  But I've always had the impression these outfits exist to drain the patients (and families) of all their remaining funds as quickly as possible before their demise.

My present attitude is that the only way anyone is getting me in one is in a straight jacket under heavy medication.  But I watched One Flew Over the Cuckoo's Nest many times, so maybe that overly influences my attitude. 

[Jersey mike]

The facility my father-in-law was in was a memory care facility. He had his own room which we had to provide basic furniture for, a dresser, mirror and night stand.

His expense covered room and board, meals, bathing and other personal care such as bathing and dressing. Part of his monthly fee was $1,100 just to give him his medication, about 5 pills a day.

While it was very expensive, we had no complaints about his facility, with the exception of some small conflicts with 2 or 3 people on the staff which were never really resolved but in the grand scheme of things we were able to overlook. All throughout the Covid situation they had zero cases with either the staff or residents.

To be honest we were surprised his facility never increased his fee because of his erratic behavior, he could be very difficult at times during his first 9 months there. He could be argumentative, rambunctious, disrespectful and at times have physical altercations with staff and other residents as well as attempting to force security doors open to try and leave. He was a constant nuisance during the overnight shift because he never slept. Night nurses would take paperwork to his room to sit with him to try and keep him from wandering the halls and disrupting the other residents. Barbara and I were once called into a meeting with the head of the facility along with management and nursing staff, it was like being called into the principals office.

When we first admitted him, he was on Haldol because he was uncontrollable at that point. Haldol is considered a medical restraint which is prohibited by law in some medical facilities but we were assured the doctors and staff could work around this protocol. The Haldol pit him in a vegetative state where he was awake but unable to walk and barely feed himself. Well apparently they decided it was best to stop the Haldol and let the staff and doctors try to use different meds to improve his state of mind and overall demeanor. Well they got what they asked for, when the Haldol was out of his system, he was eating and causing havoc on a daily basis.

At our meeting I called them out on it, I said to the head of the facility “you told us specifically that using the Haldol would not be an issue yet here we are after we explained his issues in detail and why he was on the Haldol”, which was not met with enthusiasm by he staff. They told us it was easier for staff if he could be more self mobile for bathing, dressing, grooming and feeding himself. We implored them to reconsider for the safety of the staff and the well being for the other residents as well as the overall social environment of the facility but it fell on deaf ears. We were told “we have it if we need it”. Several weeks later we were called that he physically threatened and tried to attack a female family member of another resident (female also) that he had become partial to.

One story we get a chuckle over is one night he was walking down the hall which is a typical medical facility (probably 8’) wide hallway. There was another male resident walking toward him from the opposite direction. They both met and neither would move for the other and a fight ensued because neither would yield to the other. Both fell to the ground in a scuffle and included some kicking while on the ground. I wish I could have seen the video of that incident.   Another incident was a nurse was trying to get him dressed and apparently he wasn’t interested. To show his disapproval and unwillingness to cooperate, he grabbed the nurse by the breast and twisted it while falling back on the bed and attempting to kick her. An incident report was filed and we got another phone call. Nice job Pop.

I could go on with similar semi humorous stories and some are much worse but I think we were lucky for the most part in the level of care he received, they certainly earned their money looking after him.