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Welcome one and all to the fifth edition of my blog series: Taking Care of the Elderly. Over the past two weeks we have discussed how the boomers are changing the face of elder care, the types of senior living, and the perils of falling. Tonight I will continue the series with a discussion of dementia, and what we can do to help people cope with this serious symptom. Enjoy.

Dementia is literally "the loss of mental functions, and must be severe enough to inhibit daily activities." As we all know, as we age our memories are not quite as good as they were when we were younger, but dementia is something far more severe. Dementia is not a disease in and of itself, but instead is a symptom of various diseases.

These diseases include:

•Degenerative neurological diseases, such as Alzheimer's, frontotemporal lobar degenerations, dementia with Lewy bodies, Parkinson's, and Huntington's
•Vascular disorders, such as multi-infarct dementia, which is caused by multiple strokes in the brain
•Infections that affect the central nervous system, such as HIV dementia complex and Creutzfeldt-Jakob disease
•Chronic drug use
•Depression
•Certain types of hydrocephalus, an accumulation of fluid within the brain that can result from developmental abnormalities, infections, injury, or brain tumors
While all forms of dementia are horrific, being that this diary is focused on the elderly, I will discuss the most common disease associated with dementia:Alzheimer's. Follow me below the squiggly for a discussion of Alzheimer's, how to treat it, how to prevent it, and the impact it has on the care of the elderly.

Let's start with one of the most concerning aspects of the Alzheimer's rates in the United States.

Dementia caused by neurological degenerative disease, especially Alzheimer's disease, is increasing in frequency more than most other types of dementia. Some researchers suspect that as many as half of all people over 85 years old develop Alzheimer's disease.
Every five years after retirement age your risk of Alzheimer's increases. Alzheimer's has many negative medical features, and is becoming an issue that will impact more and more as life expectancy increases. One of the key reasons many researchers believe that Alzheimer's is increasing is because our life expectancy continues to grow. While Alzheimer's is incurable, the quality of care one receives can increase longevity, improve memory retention, and provide for a better quality of life for those impacted by this disorder.
Early Signs of Alzheimer's Disease


Much like any disorder, it is to your benefit to be diagnosed early. With early diagnosis you can make decisions for yourself about the care that you will receive. It also enables you to take advantage of all that medicine can offer to those suffering from Alzheimer's disease. Current medication only slows the progression of Alzheimer's disease so it is very important to catch it early. Below are so early signs of Alzheimer's disease:
•Asking the same question over and over again.
•Repeating the same story, word for word, again and again.
•Forgetting how to cook, or how to make repairs, or how to play cards—activities that were previously done with ease and regularity.
•Losing one's ability to pay bills or balance one's checkbook.
•Getting lost in familiar surroundings, or misplacing household objects.
•Neglecting to bathe, or wearing the same clothes over and over again, while insisting that they have taken a bath or that their clothes are still clean.
•Relying on someone else, such as a spouse, to make decisions or answer questions they previously would have handled themselves.
These warning signs are often brushed away as not important, but THEY ARE! Never ignore warning signs. Many older people that I know personally have memory issues, but will not acknowledge them. They will argue against anything you do to attempt to help them, but remember, it is in their best interest if they get help. Often, many children of the elderly do not want to recognize that there is something wrong with their loved one. It can be really tough to deal with, but helping your parent, spouse, or grandparent now can help increase their quality of life, and that is so very important.
Progression of Alzheimer's Disease


Most experts categorize the progression of Alzheimer's Disease into three categories. Mild, Moderate, and Severe. The progression of alzheimer's disorder can be slowed during the mild and moderate phases. Multiple medications exist to curb the cognitive decline seen in patients, and many patients can live full lives without much assistance during the early stages. Promising treatments may also be coming soon for those that suffer from severe alzheimer's disease.

Near the end of one's battle with Alzheimer's disease, it can become extremely stressful for both the patient and the caregiver, especially if the caregiver is a family member. Don't be afraid to ask for help. 24/7 nursing care is often required for advanced Alzheimer's disease, as most individuals can not participate in their own treatment any longer. Nursing facilities are also an option. The alzheimer's units are secured, and your loved one will have less of a risk of getting hurt than they would living at home.

If it is important to you to have your loved one at home, then take approriate safeguards, much as if you had a child. Keep the doors secured out of the reach of your loved one. Alzheimer's disease makes some individuals wander, and you do not want them to get lost. Do not allow them to cook without your supervision. People suffering with cognitive decay often forget to cut off stoves, etc... With some effort, you can improve their quality of life as well as your own.

Caring for a person with Alzheimer's

At my place of employment, we have a little "absolutes" list on caring for people with Alzheimer's. I think it is appropriate for this section.

Absolutely Never:
Argue instead agree.
Reason instead divert.
Shame instead distract.
Lecture instead reassure.
Say "remember" instead reminisce.
Say "I told you" instead repeat/regroup.
Say "you can't" instead do what they can.
Command/demand instead ask/model.
Condescend instead encourage/praise
Force instead reinforce.

These little tips will help you alot when coping with an individual with Alzheimer's. They don't remember, and no amounts of "remember, I told you, or arguing will make it come back. Work on their strengths, not the weaknesses.

Make sure that the person you are caring for takes their medication on a regular basis. This medicine helps with memory retention and extended cognition. Much of the current research is medicinal for treatment of Alzheimer's disease, but that is not true of prevention.

Preventing Alzheimer's


You've heard of "heart healthy" to prevent heart disease but now we have "brain healthy" to prevent diseases of the brain.

Below is a six pillar model for being brain healthy!

The six pillars of a brain-healthy lifestyle are:

•Regular exercise
•Healthy diet
•Mental stimulation
•Quality sleep
•Stress management
•An active social life

One of the keys to lessening your risk of Alzheimer's is mental stimulation. While the rest of the pillars are fairly self explanatory, I think this one is unique to overall brain health. Mental stimulation is so important to maintaing a healthy brain. Although it can be fun to vedge out and read the latest trashy magazine, or get lost in an episode of Gossip Girl, it's not the best way to keep the mind healthy. Strategy games, memorization, learning a new language, and varying up your lifestyle can all help to increase mental power, and keep you brain healthy for many years to come.

Conclusion: A Brave New World of Brain Health


Remember, nobody is at fault when you receive a diagnosis of Alzheimer's disease, and you can make the most of the life that you or your loved one has left. Everyday, medical science is getting closer and closer to unlocked the secret to reversing the condition or stopping it in its' tracks. We have some of the best minds in science working on the disease, and a day will come when nobody will ever have to suffer again from this deadly disease.

This is not everything about Alzheimer's that could ever be written, but I wanted to raise awareness. I'm not a doctor, so discussing the medicines would be outside my expertise. If you or someone you love is suffering from memory problems don't wait, get help now. Thank you all.

Previous Diaries in the Series

The Baby Boom Boom Boom Part 2

The Baby Boom Boom Boom Part 1

The Perils of Falling

This is Not a Nursing Home

Medical Advice Disclaimer

The information included on this post is for educational purposes only. It is not intended nor implied to be a substitute for professional medical advice. The reader should always consult his or her healthcare provider to determine the appropriateness of the information for their own situation or if they have any questions regarding a medical condition or treatment plan.

Originally posted to zakandsantos on Sat Jul 21, 2012 at 06:23 PM PDT.

Also republished by CareGiving Kos and Community Spotlight.

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Comment Preferences

  •  Another excellent diary. (11+ / 0-)

    I would love to see a 'Fall Prevention for the Elderly' diary.
    Thank you for this series!

    "The better I know people, the more I like my dog."

    by Thinking Fella on Sat Jul 21, 2012 at 06:45:18 PM PDT

  •  Question (10+ / 0-)

    My father had a massive stroke when he was 57.  He had a very stresful job and alcohol abuse for years.  And he smoked.  Anyway, he did well in recovery and wound up with speech and cognitive issues, but recovered physically.  He lived to be 86 and I learned lots about stroke related dementia in the last few years.  My real question is about my mother.  She was his caregiver and is now 85.  She doesn't truly fit any of your categories but her short-term memory is starting to fail.  She lives alone now and I am not worried about that yet, but looking toward the future and working with her on what is the best course to take.  I guess I just want some affirmation that I am thinking in the right direction.

    •  I can't give medical advice (8+ / 0-)

      but personally I would say that it is never bad to start figuring out what to do before it gets so bad that you are forced into action. As humans, we don't make the best decisions under pressure, so careful planning for late-adulthood is always a good thing. What are your plans?

      Born in TN-05 and Live in TN-05, Went to college in TN-09 and TN-06, Married in IA-02.

      by zakandsantos on Sat Jul 21, 2012 at 07:30:54 PM PDT

      [ Parent ]

      •  Cheap Niacin has good ALZ results on mice! (5+ / 0-)

        However, because Niacin is a vitamin and cannot be patented, and the cost is about $8.00 retail for a month's supply, drug companies will not follow up with more studies.

        It is amazingly simple how Niacin works. It dilates blood vessels and capillaries, then leave the body in urine.

         The dilation of the blood vessels carries extra blood to the deep reaches of the brain and dislodges and flushes plaque from the blood vessel walls and brain tissue. It is the clogging of tiny blood vessels in the brain that causes Alzheimers, due to portions of the brain dying from lack of blood.

        Unfortunately humans do not regrow brain tissue that has already died, so these drugs that allow plaque to be flushed from the brain can only be preventative in humans.

        Rats were cured because their brains are regenerative, (similar to their teeth), so when the plaque was removed by the dilation, the brain tissue could regrow.

        I take 600mg twice per day because both my parents have Alzheimer's. Caution: No-Flush niacin does not work! The skin flush is the indication that it is working.

         Less than five minutes after taking 600 Mg niacin, I can literally feel the tingling in my scalp so I know something good is happening.

        Please, if you have parents with dementia, google the following terms together :

        Niacin, Alzheimers, Dr Hoffer

        •  Thank you. (5+ / 0-)

          My mom has dementia. I wrote about it in the June 2nd WYFP diary. She has always been into nutrition, and otherwise is unusually healthy for an 87 year old. Took care of her heart and everything... but this.

          Niacin makes sense. I take a B-compound. I will research and see if I am getting enough, but probably not. Going to be fun on top of the hot flashes I am dealing with periodically... flushing and flashing! But I am taking prevention very seriously.

          I work in the design field, so I am constantly learning new software and and new methods for developing websites, thereby seriously exercising both sides of my brain. Next up – studying music theory and taking up a few instruments. Learning never stops, the more difficult the better.

          curious portal - to a world of paintings, lyric-poems, art writing, and graphic and web design

          by asterkitty on Sun Jul 22, 2012 at 11:44:49 AM PDT

          [ Parent ]

    •  I hope you live nearby. (7+ / 0-)

      Check to make sure she is paying her bills on time.

      Make sure she is making all appointments and regular visits, such as church or social events.

      Check the fridge to make sure there is plenty of food.  My mother-in-law often forgot to eat.

      Is she still driving?  Try to arrange things so she won't have to.  While still driving, my mother-in-law frequently got lost and disoriented in the early stages.

      Is she a well-reasoned person willing to talk about her late life care?  Do you have siblings who might disagree with your notions of care?  Try to get your siblings together with your mom for an open discussion.

      Power of Attorney is a very important thing.  Talk to your mom, siblings and an attorney about this.  Educate yourself.

      Government of the people, by the people, for the people, shall not perish from the earth - Abraham Lincoln

      by Gustogirl on Sun Jul 22, 2012 at 10:01:27 AM PDT

      [ Parent ]

  •  Thanks. I'm 71 and very aware that I can't do (11+ / 0-)

    some of the things I once did.

    Luckily, I have a daughter and her two teen daughters and another daughter and her husband living with me.  None of them are likely to be backward on questioning me on really forgetful behavior.

    So far, lapses are things I figure out for myself, but it really bugs me, some of the things I realize I have forgotten or slipped up on....

    Nothing in the world is more dangerous than a sincere ignorance and conscientious stupidity. Martin Luther King, Jr.

    by maybeeso in michigan on Sat Jul 21, 2012 at 07:45:03 PM PDT

  •  I'm glad you are continuing with this, zak, it is (11+ / 0-)

    super helpful.

    Are you going to get into paperwork at all?

    Like Durable Powers of Attorney for Healthcare or just Powers of Attorney?

    That can all vary by state, so you couldn't do it all, but general guidelines might be helpful.

    Keep up the good work!!!!

    This is, of course, the difference between republicans and human beings. - Captain Frogbert

    by glorificus on Sat Jul 21, 2012 at 08:04:14 PM PDT

    •  I decided to continue (7+ / 0-)

      after all. I tend to write three a weekend on my three 14 hour shifts at work :-) I have thought about doing a paperwork diary. I'm trying to maintain a list and plan on going through all the diaries as I only have two more topics that I definitely wanted to do in the series and afterwards it would be community comments that would prompt me to write.

      Thanks so much!

      -Zak

      Born in TN-05 and Live in TN-05, Went to college in TN-09 and TN-06, Married in IA-02.

      by zakandsantos on Sat Jul 21, 2012 at 08:08:42 PM PDT

      [ Parent ]

    •  This is a very important topic. (13+ / 0-)

      My mother, who had been in and out of mental hospitals mainly because doctors prescribed heavy-duty tranquilizers and anti-parkinson's drugs together with a pharmacopeia of other medicines, gave me durable powers of attorney when she was in her 70's. In the aftermath of cancer treatment, I arrived at her bedside to find her in a straitjacket and totally out of her mind begging to die. Because I had the powers of attorney, I was able to force her doctors to remove her from certain meds. (This is a more complicated story--I had experts to consult, for instance.) She rebounded instantly but I had to keep a sharp eye because hospitals will drug patients with the strongest medicines in order to keep patient agitation down. And some of those drugs in the elderly will make the agitation worse. So those papers are vital if you are going to care for your parents or anyone you need to make decisions for.

      Which leads me to suggest another important topic: drug effects on the elderly. After age 55 a person's ability to metabolize drugs slows down. Most drugs are not tested on the elderly so side effects in that population may be mistaken for something else. Then what happens is the doctor throws more drugs at the "symptoms" he sees. I had a psychiatrist friend who worked with the elderly at the VA who told me that probably 75% of the dementia patients he saw were there because of a drug interaction, overdose, or too speedy drug withdrawal. So I would like to see a diary on this too.

      Force is the midwife of every old society pregnant with a new one. Marx

      by Marihilda on Sun Jul 22, 2012 at 07:50:39 AM PDT

      [ Parent ]

  •  Thanks for the excellent diary. (7+ / 0-)

    b

    You can't make this stuff up.

    by David54 on Sat Jul 21, 2012 at 08:16:03 PM PDT

  •  Alzheimers (7+ / 0-)

    can also be early onset--in on's "prime years"  There is a very good novel (fiction but extremely well researched) called "Still Alice" about a woman coping with early onset dementia.  Recommend as a help to empathize with those afflicted.

    Democrats give you the Bill of Rights; Republicans sell you a bill of goods!

    by barbwires on Sat Jul 21, 2012 at 08:32:44 PM PDT

  •  I'm wondering about an issue of... (6+ / 0-)

    an elderly person who, because of mobility problems has to live in an assisted care environent, but who is also very sharp mentally. However, many of my mother's peers in her retirement home have varying degrees of forgetfulness bordering on dementia although if they get too bad, they generally don't stay. What are the effects, if any, on a mentally acute person living amidst many who are not so sharp? We try to keep my mother mentally challenged by ensuring she has a daily paper and newsmagazines as well as cable TV. I've even got her tackling how to use a computer for internet and email. Will this help?

    Just another faggity fag socialist fuckstick homosinner!

    by Ian S on Sat Jul 21, 2012 at 08:58:45 PM PDT

  •  Thank you for this diary. (7+ / 0-)

    My MIL had severe Alzheimer's when she passed in 2000. It was rough seeing the toll it took on her children and other loved ones.

    Now I'm dealing with Pops and his dementia. So far Mom is doing pretty good in the day to day stuff, but I know it's taking a toll on her mental/physical health. For this reason alone I refuse to move from the area, much as I'd like to.

    If there's one thing we've learned, sometimes you just have to laugh or else you'll cry. Most recent example:

    Every single day Mom will write a list of the things she's doing (because Pops forgets almost immediately). One day the list included, "Take urine sample to hospital" (her own).  Later in the day Pop asked, totally straight faced, "Did you take the semen sample in?" which lead to a discussion on the fact that Ma does not, in any way, produce semen.

    Like I said, laugh or cry...we're trying to keep on laughing.

    "Reading Romney's positions is like trying to read tetris blocks. They move, rotate, and disappear when they settle in." ~ centigrade100

    by Reel Woman on Sun Jul 22, 2012 at 12:23:38 AM PDT

  •  My Bible: "Ten real-life strategies" (8+ / 0-)

    "Ten real-life strategies for dementia caregiving"

    http://www.caregiver.org/...

    While taking care of my two very elderly parents, both with dementia, I discovered this article and absorbed it, and it changed my life.  

    And like the Bible for a believer, I read it many times until it became an integral part of my consciousness.  I never found anything better than this during all my years of dealing with the reality of my parents' dementia.

  •  My Mom (6+ / 0-)

    I was fortunate in that my Mom never developed dementia. She did have trouble remembering some things towards the end. She was frantic when she couldn't find her keys and I found them on the brick wall outside the carport. She did tell the same stories over again but she was reasonably sharp when she passed away.

    My brother took care of our Aunt and she had dementia. Sometimes Reid was her cousin, her fiance who died in World War II, and our Dad. Once in a while she would remember that he was her nephew. Reid was able to handle it with a sense of humor.

    "A dreamer is one who can only find his way by moonlight, and his punishment is that he sees the dawn before the rest of the world." Oscar Wilde

    by michelewln on Sun Jul 22, 2012 at 06:47:47 AM PDT

    •  We had similar experiences with my mom. (6+ / 0-)

      My sister was her primary caregiver in her last years, and was called her mother, grandmother, friend, and sometimes her daughter.  
      I remember one incident where my sister had been away for a day or two, to a seminar having to do with her work.  Mom was "so glad to see her face again", then not 10 minutes later, Mom asked "Who are you?"

      She would also get up in the middle of the night, and thinking it was morning, got all dressed for the day.  My sister would get her back in bed, but not often for the night, as this happened two or three times a night.

      Mother Teresa: "If we have no peace, it is because we have forgotten that we belong to each other."

      by Amber6541 on Sun Jul 22, 2012 at 11:17:14 AM PDT

      [ Parent ]

  •  My Alzheimer Experience - a bit of a rant (10+ / 0-)

    My personal experience in getting a dx of Alzheimer's for my Mom (who also has COPD) was agonizing.

    There is no definitive test for Alzheimers....so you can't easily get an early dx....so you don't get meds.  A catch 22 of sorts.  You typically get a dx of mild or moderate cognitive impairment.   So, it can be years into a persons dementia before the neurological exams indicate any treatment for Alzheimers; and in my Mom's case she had a negative reaction so could not take those meds.  

    When you have family members who are likely to stick their heads in the ground, a dx of "mild" cognitive impairment does not help.  [ I seriously want to know who came up with this term.  Was it a joke?  There is nothing 'mild' about it!!! ]

    I have been through about 4 years of hell with this problem.  I was only able to get the car keys away from my Mom last year.  It was brutal...I had been trying for over a year to get this done.  Her PCP would not write a letter to the RMV.  Meanwhile visiting nurses would harangue me about getting her off the road...but would not give me a written report that I could send to the RMV.  It took a loss of consciousness due to pneumonia and a hospitalization - which gave me the opportunity to go through her house and physically remove her keys and car to get this accomplished.  And she called the RMV herself and reported me for taking her car and keys...and they told her I had no right to do that.  It turns out that is the case in MA.  But I did it anyway.  

    By the time family could agree that Mom was unable to live alone it meant her spending a month in the homes of 2 different sibs...(Mom refused to let the visiting nurses or any other help into her home...so we planned a few trips for her to visit with a couple of her kids).  

    During one of these stays my mom filled a house with gas from a stove, endangering  6 of her great-grandchildren who were visiting.

    Finally, all sibs (there are 5 of us) agreed she needed assisted living.  The reason we needed this consensus is because my mom had hidden her Health Care Proxy, POA and Will.  It took me weeks to find them after we got her out of her home.  

    By the time we got her into assisted living she had degenerated so badly that she ended up back in the hospital and then it was on to rehab.  In general I don't think that a general assisted living facility is a good place for folks with early or moderate dementia.  The aides are not well trained enough to recognize serious medical problems when dementia patients don't recognize they are having symptoms and don't complain or verbalize this, and nurses and doctors are few and far between.  And the Dementia Units in these facilities are filled with residents with more advanced disease, so patients with 'mild cognitive impairment' just don't fit there.  And don't forget that many of these places are for-profit, and as such decisions are made based on the bottom line.  (I don't mean to paint all assisted living with a bad brush...but my Mom was in 2 different facilities while she was at the 'mild' stage and it really did not work well.)

    She is now in a nursing home in a dementia unit where the other residents are far more advanced in their disease.  She is safe there, but it is sad because she is ambulatory, can feed herself, and she is quite aware and very sharp except for memory, which is not existent.  She does not recall the beginning of her sentence, so never even repeats herself.  If you can get her to talk about old times (20-30 years back) you can sometimes have a nice conversation with her.

    She was difficult and combative from the very beginning and as she has declined she has become very aggressive.  She throws things, strikes out and hits people, barricades herself in her room (even though another patient shares the room - very frightening for the other resident), and cusses like a sailor.  She pretends to take her meds, then flushes them down the toilet, or puts them in her pocket.

    She spent a month in a psychiatric hospital (because the nursing home could not handle her), where they came up with a med plan that helps with some of her aggressive behavior.   But she is still a handful.  

    I live several hundred miles from where my mom is.  I try to visit every 2-3 weeks - depends on money because I am broke.  I get frequent calls from the nursing staff because she is acting out.  

    I know that many Alzheimer patients are not as badly behaved as my mother; but I sure do wish that there were facilities to deal with her profile-type.  I think I read that about 10% of Alzheimer patients become very aggressive.  But it does not appear that the facilities and staff are equipped to handle this patient population.

    I fall down, I get up, I keep dancing.

    by DamselleFly on Sun Jul 22, 2012 at 07:01:59 AM PDT

  •  A trick I learned (7+ / 0-)

    many years ago... one skill that is one of the last to go in Alzheimer's patients (because it's learned in childhood for the most part) is reading. So written reminders of things help with memory and step by step instructions also help, and in later stages "stop" signs or "Do not enter" or "employee's only" signs on doors you don't want them to open (like ones with dark basement stairs behind it) work.

    "Madness! Total and complete madness! This never would've happened if the humans hadn't started fighting one another!" Londo Mollari

    by FloridaSNMOM on Sun Jul 22, 2012 at 07:53:00 AM PDT

  •  Alzheimer's Research (6+ / 0-)

    I would like to put in a plug for a very special organization founded by my friend Ami Simms:

    "The Alzheimer's Art Quilt Initiative® (www.AlzQuilts.org) is a national, grassroots charity whose mission is to raise awareness and fund research. The AAQI auctions and sells donated quilts, and sponsors a nationally touring exhibit of quilts about Alzheimer's. The AAQI has raised more than $735,000 since January 2006."

    The ongoing auctions of small wall quilts go for very reasonable prices. The website incudes lots of good links, and suggests other ways to help support the research.

  •  lost uncle this week to Alzheimer's (5+ / 0-)

    He had retired early and led that active life we are supposed to do: built him own log home, planted a blueberry farm and ran that with his wife for a number of years. When he stopped that from age and other issues, he was still pretty active, but got Alzheimer's anyway. First thing:get rid of the guns/weapons in the house. They let him drive for awhile and he would take off in his car and drive 2 1/2 hours to Houston, Texas to see his daughter. Eventually he would just take off and drive an hour and be found in a Home Depot with no idea how he got there. Spent some years in nursing home. It is awful for a family. His sister had it as well, a brother has dementia. My mom is more and more forgetful(at 83) but managing. On the other side of my family, people can have awful physical ailments and stay mentally sharp right up to death.

    George W. Bush: the worst Republican president SO FAR.

    by Chun Yang on Sun Jul 22, 2012 at 08:15:17 AM PDT

  •  Thank you for posting this diary (4+ / 0-)

    it answered alot of questions I didn't feel like asking.

    My 93 year old grandmother, who now lives alone since her husband past away 4 months ago, now seems to have little ability to remember new things.

    It seemed to happen very fast, she was still working this time last year.

    thanks for the insight

  •  How do you get someone (4+ / 0-)

    with obvious signs that this is happening to get the help they need? We are at the stage where she knows that she has memory loss but refuses to acknowledge how bd it has gotten. Her husband is in the late stages so she knows what it looks like but she vehimently(SP?) denies that she is moving in that same direction.

    I don't want to take drastic steps but I may have no choice. Is there any way that I can get her the help without taking those steps?

    Most of the people taking a hard line against us are firmly convinced that they are the last defenders of civilization... The last stronghold of mother, God, home and apple pie and they're full of shit! David Crosby, Journey Thru the Past.

    by Mike S on Sun Jul 22, 2012 at 08:31:54 AM PDT

    •  BTW (3+ / 0-)
      Recommended by:
      Amber6541, glorificus, Spirit Dancer

      I have durable power f attourne, both financial and medical, already.

      Most of the people taking a hard line against us are firmly convinced that they are the last defenders of civilization... The last stronghold of mother, God, home and apple pie and they're full of shit! David Crosby, Journey Thru the Past.

      by Mike S on Sun Jul 22, 2012 at 08:33:38 AM PDT

      [ Parent ]

      •  get others to help (5+ / 0-)

        Good for you for having the paper work in order.

        Might I suggest using social workers or other people with authority whom she respects (neighbor, clergy, doctor)
        I have been able to plan and collaborate with peers and staff to facilitate a change in care and let it come from them. Their authority works where I don't have any.

        Also maybe working on alternate care for husband first. She may be trying to hold on to care for him?

        I'm also currently interviewing for "Care Managers" a new field that offers "as if I were the daughter(son) care management" but from a perspective of knowing the community resources. So I'm not having to do all the research myself.

        "Eating your seed corn is not a good business model." - FishOutofWater

        by saluda on Sun Jul 22, 2012 at 11:43:42 AM PDT

        [ Parent ]

  •  custodial care / Medicare and Medicaid (4+ / 0-)

    It's been many years since I needed to understand the custodial care policies of Medicare and Medicaid. At the time I was very surprised by how little was avaialble and how restrictive the policies. Draconian sort of summed it up.

    It might be very helpful to present a summary of Medicare and Medicaid policies and other resources for custodial care.

    •  Palliative care (8+ / 0-)

        It would be nice if medicare provided palliative home services as they do hospice care, but they don't.  My father is 100 and a dementia sufferer for a couple of decades, the last being the worst.  He and my mother moved in with me when he was 90.  He needs 24/7 close supervision now.  My mother is now 90 and has her own health problems.  It's come to the point where I call my brother to "visit" them when I need to go out for very long.  The point being, if something happened to my mother, my father wouldn't know what to do.  My mother can't be trained to keep her cell phone in her pocket to call for help.  

          Currently, we are among the lucky, because my father retired from the military.  We do get some in home care through the VA.  It's a closely guarded secret that this service is available through them, I think.  He was 98 when his doctor said she'd order it for him.  The only problem with it is there is no coverage on nights and weekends as there is with hospice, meaning, if something happens, there's no one to call but 911.  With hospice, you call and get a nurse to advise what to do.  This is the point of palliative care, to provide comfort care at home and not run to the ER.  There's little anyone can do for my father at his age, unless it's something like a broken bone from a fall.  So, there are these little cracks in our system and huge cracks for everyone else.  We pay for someone to come do the things around our house my mother wants done.  My mother is picky and I gave up trying to please her a long time ago.  It's money well spent.

      Shine like the humblest star.

      by ljm on Sun Jul 22, 2012 at 10:01:10 AM PDT

      [ Parent ]

  •  The biggest issue is with care (8+ / 0-)

    I cared for my mom, who has vascular dementia, until she had another minor stroke and they could not rehab her to a degree where she could come home. We have gone through her savings and are now trying to get her on MassHealth or, if you prefer, "RomneyCare."
    A nursing home costs something like $13,000 A MONTH, and that's for an average one with fairly good care.
    How the hell are people supposed to afford this? And as our population ages, it's only going to get worse. Lots of Boomers do not live near family. And lots of families do not want to take on caring for an elderly person - whether parent, sibling or relative.
    It is going to become a national crisis. We need universal health care that pays for it ALL - from birth to grave. Anything else is unacceptable.

    Isn’t it ironic to think that man might determine his own future by something so seemingly trivial as the choice of an insect spray. ~ Rachel Carson, Silent Spring ~

    by MA Liberal on Sun Jul 22, 2012 at 09:53:14 AM PDT

    •  One of the things that folks don't understand (4+ / 0-)
      Recommended by:
      glorificus, Maudlin, devis1, Spirit Dancer

      is that Medicaid (which will pay for nursing home costs) is only available to those who have worked down their assets.  If you own a house, and live alone, they will lien the house until it is sold, then you must pay them back, work down whatever monies are left, then Medicaid will kick in again.

      And NB:  Medicaid (MassHealth, MaineCare, or whatever your version) - can look back 5 years to see what assets were in the name of the patient.  If any assets were distributed, you will be 'penalized' by the fact that Medicaid won't kick in until you have paid that money back into the care of the person in the nursing home.

      Something else I have found out about Medicaid is that they will only hold a bed for 10 days.  This means that if a nursing home resident is hospitalized and they are released 12 days later, there is no guarantee that the nursing home will still have that bed available.  So, your loved one could end up in a totally different facility.

      I fall down, I get up, I keep dancing.

      by DamselleFly on Sun Jul 22, 2012 at 12:00:53 PM PDT

      [ Parent ]

      •  The idea (4+ / 0-)

        that you must lose everything to get care is just really sad. I completely agree this care should be provided for all.

        Born in TN-05 and Live in TN-05, Went to college in TN-09 and TN-06, Married in IA-02.

        by zakandsantos on Sun Jul 22, 2012 at 04:28:44 PM PDT

        [ Parent ]

      •  Different states have different laws (1+ / 0-)
        Recommended by:
        DamselleFly

        In California, as long as you have a signed document that states that you intend to return home (however hopeless that idea may be) you get to keep the house. If it is sold, or when you die, the State gets all the Medi-Cal (Medicaid) money back.

        People do not understand this. They expect to inherit Mom's house- and are hit with a $240,000 Medi-Cal lien. Then they get very upset.

        It bears repeating:
        Medicare is INSURANCE
        Medi-Cal or Medicaid is a LOAN

  •  just discovered you & your series. add me to (4+ / 0-)

    your list of fans!  

    both my parents are gone & while neither of them had dementia/alz (both died from strokes), i cared for my mom after she had heart surgery, & i wish i had had the benefit of some of the advice in your diaries while i did.

    great info & the comments from dkos members are very helpful, too.

  •  Thank you for an informative and helpful diary (6+ / 0-)

    My suggestion would be a diary covering dehydration in the aging.

    My father was showing signs of dementia but was physically healthy at 80. I was starting to work with his doctor about this when he was diagnosed with pancreatic cancer.

    Long story short, he responded well initially to the chemotherapy, and the slight dementia helped because he wasn't aware of how serious the diagnosis was. He passed away two years ago.

    Our biggest problem was that between chemo, living in Arizona and his stubbornness about not wanting to drink water he would get dehydrated and become extremely confused. It took a while until I recognized the symptoms and took him in for IV fluids where I meet people with similar problems (not drinking enough water).

    I'm helping my mother out now and notice that she doesn't drink that much water either. I don't know out this is generational or what, but my siblings and I drink water like fishes.

    Sorry to ramble on, but this is something I've wondered about.

    •  Thanks! (3+ / 0-)

      Good ideas. And I'm glad you enjoyed the diary.

      -Zak

      Born in TN-05 and Live in TN-05, Went to college in TN-09 and TN-06, Married in IA-02.

      by zakandsantos on Sun Jul 22, 2012 at 06:39:47 PM PDT

      [ Parent ]

    •  The doctor said the same thing to us. (3+ / 0-)

      He said something about dehydration being a huge problem in nursing homes.  I second your request for a dehydration diary.

    •  We lose our sense of thirst as we age... (2+ / 0-)
      Recommended by:
      zakandsantos, NYC Sophia

      this is what I learned caring for my Mom. I had to encourage her to drink lots of water. Now as I'm getting older, I notice too that I don't "seem" thirsty so I force myself to drink water often. There's a trick of pressing on your fingers together to see how fast  the flesh bounces back. If it doesn't start drinking. Great tips I learned from the ER folks when I'd bring my Mom in with shortness of breath.

      "If you don't like the news, go out and make some of your own." Wes "Scoop" Nisker

      by Spirit Dancer on Mon Jul 23, 2012 at 05:53:23 AM PDT

      [ Parent ]

    •  My father has heart failure (2+ / 0-)
      Recommended by:
      zakandsantos, NYC Sophia

      as well as dementia (and other health troubles) and his doc said to restrict his fluids to 6 cups per day. Of course he is on salt restriction too because of his failing kidneys. He takes diuretics for the heart failure. So I am confused about how much our trying to DE-hydrate him adds to his dementia. Seeing kidney doc next week and this is on our list of questions. I get that it's all a balancing game, but which way is more dangerous?

      The trouble ain't that there is too many fools, but that the lightning ain't distributed right. Mark Twain

      by BlueMississippi on Mon Jul 23, 2012 at 02:37:11 PM PDT

      [ Parent ]

  •  I want to share something (3+ / 0-)
    Recommended by:
    devis1, zakandsantos, Spirit Dancer

    and maybe you have or will address this in the series.  My grandfather lived alone and one day he did something unusual that upset my immediate family.  Once he realized what he had done he was very sorry.  A little too emotion if you ask me.  I lived 1000 miles away, didn't see him day-to-day but insisted that he be evaluated for dementia.  My grandfather had 8 children and I was one of 2 dozen grandchildren.  6 figures later and after a nasty probate fight my grandfather was placed in home to get the 24-hour care he needed.

    While his being evaluated as having moderate to severe Alzheimer's was a heartbreaker most of my time was spent fighting his children and other grandchildren who did not believe he had Alzheimer's.  All of your nevers above they did in spades.  I get that it is shocking to see your grand/parent have a change in mental acuity and you go through a period of disbelieve.  But 2 years is long time to be in a state of disbelief.

    Anyway my 2 cents is when your elderly relative needs a guardianship I believe guardians should go through guardian classes.  I know they have parenting classes for new parents but this is different because your grand/parent either forgot or can't do the things they could last year or last night.  Caretakers and guardians need to understand that AND they need to weed through the Medicare and Medicaid game.  By the end of it you have to be mother, father, priest, doctor, nurse, lawyer, accountant and friend.  The stress aged me a few years.  God only knows what it did to Granddaddy.  A class may not have prevented the stress but it sure would have helped!

    I could say more but will just thank you for the series.

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