Medical Forum / Diseases and Disorders / Alzheimer's / November 2007
On-again, off-again Hospice care
|
|
Thread rating:  |
Sarah Kanary - 14 Nov 2007 22:08 GMT My mother's AD has progressed to the point where she is having difficulty walking, talking, doing just about everything. For a while, she was refusing to eat, so was put on hospice care, but started eating again, so was taken off hospice 3 months later.
Now she fell out of bed and bumped her head, plus got a nasty black eye and was put back on hospice. I thought "hospice" meant that death is going to be soon. So I brace myself. This is it. Then it's not. I'm of course not in any kind of hurry, but this is really an emotional rollercoaster. How can I make sense of this "death is near/no it's not" game? Anybody here been through this?
Sarah
Beth Cole - 14 Nov 2007 22:22 GMT > How > can I make sense of this "death is near/no it's not" game? Anybody here > been through this? What you're going through sounds very familiar. My mother-in-law has outlived her hospice benefits. There is a four-year maximum term that a given patient can receive benefits through Medicare Hospice programs in the US. She was in for the maximum amount of time and had to be discharged. We were originally told when she was accepted for hospice care in the nursing home back in late 2002 to expect death within six months.
Doris has now been in the nursing home for six years next week. It's awful. It's a feeling of purgatory.
Beth
 Signature Don't go around saying the world owes you a living. The world owes you nothing. It was here first. ~Mark Twain
sweetpickleNO@SPAMknology.net - 15 Nov 2007 04:01 GMT When my husband was in the nursing home and put under hospice care, the doctor didn't expect him to live over a month. However he died eight months later. Gwen
> My mother's AD has progressed to the point where she is having difficulty > walking, talking, doing just about everything. For a while, she was [quoted text clipped - 9 lines] > > Sarah news.chi.sbcglobal.net - 15 Nov 2007 08:37 GMT Read my post following yours about nursing homes. No matter that it sounds strange, anti-depressants used in nursing homes *and elsewhere) can confuse, harm others. Consider this aspect. Nothing good comes from nursing homes that use anti-depressants. Far as I know, they all do, thanks to the pharmaceuticals. Gail \
> My mother's AD has progressed to the point where she is having difficulty > walking, talking, doing just about everything. For a while, she was [quoted text clipped - 9 lines] > > Sarah OldRoads - 15 Nov 2007 12:25 GMT On Nov 15, 3:37 am, "news.chi.sbcglobal.net" <kureforcro...@sbcglobal.net> wrote:
> Read my post following yours aboutnursinghomes. No matter that it > sounds strange, anti-depressants used innursinghomes*and elsewhere) can > confuse, harm others. Consider this aspect. Nothing good comes fromnursinghomesthat use anti-depressants. Far as I know, they all do, > thanks to the pharmaceuticals. > Gail \ It seems most Nursing Homes do use anti-depressants. The amount and frequency of use is what makes the difference.
http://SearchNursingHomes.com
EddyJean - 17 Nov 2007 05:04 GMT Read my post following yours about nursing homes. No matter that it sounds strange, anti-depressants used in nursing homes *and elsewhere) can confuse, harm others. Consider this aspect. Nothing good comes from nursing homes that use anti-depressants. Far as I know, they all do, thanks to the pharmaceuticals. Gail \ =====================================
HI Gail: A friend in the late 1980s was in a singing group that performed thoughout the city and also sang at nursing homes. The residents at different nursing homes attending the performances were all asleep because of drugs even before the group sang a note. My mother had Alzheimers and was killed in a nursing home. Anyone with a loved one in a nursing home with memory loss, request those Deficiency/Correction reports. The state, insurance, social security and nursing homes at administrative levels sleep in the same bed.
EddyJean
news.chi.sbcglobal.net - 17 Nov 2007 17:10 GMT EddyJean, No question that what I say sounds strange. But it is a fact. Have seen it over a long peiod of time. Anti-depressants absolutely change the makeup of a person, mentally and bodily, They don't even have to be in each others presence, Just the mind had to be focused or the person has to be observed for all the changes to take place. It is the only illness I know that the mind plays the pivotal role. All others have to be contracted simply by exposure, as colds, pneumonia, etc. or they are formed bodily as diabetes, etc. (In fact, crohns can cause diabetes, tremendous eye problems, etc. etc. etc. No one can be certain their loved one did not experience these strange changes in health from other's use of anti-depressants. And to top it all, the administrator I deal with has no concern for this. She has stated she will never have the anti-depressants discontinued. I have noticed that they really do not care about the residents or workers either, for that matter. There is always another one waiting to come in. And I thought she cared about my friend because she is young, and came in with good physical and even the mental health was much better. And she knew her from the neighborhood, so it should be personal. I am not saying the physical care is not good. It is, but the anti-depressants throw the whole situation off by causing them horrible symptoms that would never be there. I see there is a nurse posting, I will say to her, she may never have noticed what I say as most places are large, and the help does not intermingle that much on a mental basis, so they are not in danger. But in the home I speak of has only 48 residents, and the front desk faces some seating where the residents like to sit. One nurse was getting ill, and he asked me what was wrong. I knew one person observing him all day was on an anti-depressant so I told him I was sure it was her. The following week he said the doctor DXd crohns disease for him. He was having a lot of difficulty walking. Instead of speaking up, he quit as many others have. It is just too bad that the situation is so subtle as not to be seen clearly by everyone, (not even the resident doctor). The nurse is suing her (I heard from a friend he made in the home) for several things including crohns disease. I am sure he is getting nowhere, and his friend left also. I don't know what the solution is, what the big gain is from anti-depressants that when they didn't have them years ago, everyone got along well with sedatives, if needed. No one needs to die prematurely and suffer too, the desk workers have the option of leaving, as many do, Some are just detached enough not to be affected. Well, I say this over and over, to no avail, and my heart is broken every moment of the day and night. Gail
EddyJean - 18 Nov 2007 21:58 GMT Re: On-again, off-again Hospice care Group: alt.support.alzheimers Date: Sat, Nov 17, 2007, 5:10pm (PST+8) From: kureforcrohns@sbcglobal.net (news.chi.sbcglobal.net) EddyJean, No question that what I say sounds strange. But it is a fact. Have seen it over a long peiod of time. Anti-depressants absolutely change the makeup of a person, mentally and bodily, They don't even have to be in each others presence, Just the mind had to be focused or the person has to be observed for all the changes to take place. It is the only illness I know that the mind plays the pivotal role. All others have to be contracted simply by exposure, as colds, pneumonia, etc. or they are formed bodily as diabetes, etc. (In fact, crohns can cause diabetes, tremendous eye problems, etc. etc. etc. No one can be certain their loved one did not experience these strange changes in health from other's use of anti-depressants. And to top it all, the administrator I deal with has no concern for this. She has stated she will never have the anti-depressants discontinued. I have noticed that they really do not care about the residents or workers either, for that matter. There is always another one waiting to come in. And I thought she cared about my friend because she is young, and came in with good physical and even the mental health was much better. And she knew her from the neighborhood, so it should be personal. I am not saying the physical care is not good. It is, but the anti-depressants throw the whole situation off by causing them horrible symptoms that would never be there. I see there is a nurse posting, I will say to her, she may never have noticed what I say as most places are large, and the help does not intermingle that much on a mental basis, so they are not in danger. But in the home I speak of has only 48 residents, and the front desk faces some seating where the residents like to sit. One nurse was getting ill, and he asked me what was wrong. I knew one person observing him all day was on an anti-depressant so I told him I was sure it was her. The following week he said the doctor DXd crohns disease for him. He was having a lot of difficulty walking. Instead of speaking up, he quit as many others have. It is just too bad that the situation is so subtle as not to be seen clearly by everyone, (not even the resident doctor). The nurse is suing her (I heard from a friend he made in the home) for several things including crohns disease. I am sure he is getting nowhere, and his friend left also. I don't know what the solution is, what the big gain is from anti-depressants that when they didn't have them years ago, everyone got along well with sedatives, if needed. No one needs to die prematurely and suffer too, the desk workers have the option of leaving, as many do, Some are just detached enough not to be affected. Well, I say this over and over, to no avail, and my heart is broken every moment of the day and night. Gail
====================================== Gail: There are many things man doesn't understand and should be studied. As the people's needs are ignored, government prefers to spend billions/trillions on war and outerspace. Those cute little "Rovers", constructed mostly from gold and seen on TV, may be traveling to the Death Valley Desert instead of Mars for all we know. If that's the case, who's pocketing the money?
Those with memory loss or speak a foreign language only, are especially at risk in a nursing home. It's as bad today as it was 15-20 years ago. Nothin's changed! The question is: why is nothing done? Surely, somewhere, there's a motive behind it, does it involve Social Security? The more elderly that die, the less Social Security pays out. Many pay into Social Security all of their working lives but don't collect a penny if dead before age 62. Many illegals who come here to work, pay taxes and Social Security before returning to their home country, who gets their Social Security benefis? Does their benefits remain in the fund or is someone pocketing this money? I'm not aware if Social Security has been audited and the results published. If not, it sure should be.
EddyJean
news.chi.sbcglobal.net - 18 Nov 2007 23:52 GMT EddyJean, I just wish I could find the answer to having the anti-depressants banned in the nursing homes. That is the biggest danger and the environment would be safe without them for everyone. The most frustrating thing I have encountered. There is no real reason for using them. They have a psychologist who can talk to them and assure them if necessary. Talk therapy was always a preferred treatment with a sedative if something was needed. What changed is when the pharmaceuticals came out with the anti-depressants, they found a gold mine and easy for the doctors to use for every imagined thing and the more that use it, the more it is needed for others. No answer, the situation is abdominable. Gail
Evelyn Ruut - 19 Nov 2007 12:52 GMT > EddyJean, > I just wish I could find the answer to having the anti-depressants banned [quoted text clipped - 9 lines] > for others. No answer, the situation is abdominable. > Gail Talk therapy doesn't work for alzheimers patients. They can't remember one minute to the next, and even if they have talked out their fears, they don't remember the answers, or the assurances.
 Signature Best Regards,
Evelyn
news.chi.sbcglobal.net - 19 Nov 2007 13:50 GMT Evelyn. True, talk therapy does not help much. But what makes you think medication does. Perhaps it was anti-depressants used by someone in the first place that put them at risk. You cannot know what anti-depressants convey from one person to another unless one experiences it. It is an experience that cannot be described, it is so subtle and life changing. Gail
>> EddyJean, >> I just wish I could find the answer to having the anti-depressants banned [quoted text clipped - 13 lines] > one minute to the next, and even if they have talked out their fears, they > don't remember the answers, or the assurances. sweetpickleNO@SPAMknology.net - 20 Nov 2007 01:40 GMT I don't have AD (yet?) and I have been on and off anti-depressants for years. I have been taking Paxil for about 20 years, and if I don't, I cry at the drop of a hat and can't seem to stop! When I take it regularly I very seldom cry. That is not imagined. Gwen
>> EddyJean, >> I just wish I could find the answer to having the anti-depressants banned [quoted text clipped - 13 lines] > one minute to the next, and even if they have talked out their fears, they > don't remember the answers, or the assurances. Evelyn Ruut - 20 Nov 2007 03:28 GMT > I don't have AD (yet?) and I have been on and off anti-depressants for > years. I have been taking Paxil for about 20 years, and if I don't, I cry > at the drop of a hat and can't seem to stop! When I take it regularly I > very seldom cry. That is not imagined. > Gwen Gwen it is brain chemistry. If the meds help you to be happy, why not? Anyone who would object must be addicted to misery and wants to see people unhappy when they don't need to be. Take em if you need em and don't listen to the nonsense.
 Signature Best Regards,
Evelyn
>>> EddyJean, >>> I just wish I could find the answer to having the anti-depressants [quoted text clipped - 13 lines] >> one minute to the next, and even if they have talked out their fears, >> they don't remember the answers, or the assurances. news.chi.sbcglobal.net - 21 Nov 2007 16:18 GMT Anti-depressants are a very complicated issue. They work very well with no side effects for the user of the anti-depressant. Let me make it clear. It has a side effect that makes it deadly to another person known by mind connection to the user of the anti-depressant, and not in all cases, but enough in subtle ways that it is not recognized. I do wonderfully on anti-depressants, but because of what I have seen and done, I have vowed NEVER to use an anti-depressant again and I suffer terribly for it. My big concern are the nursing homes that do use anti-depressants, and the people that do not use anti-depressants have no choice but to be in that environment. If their family can choose if they want or should be on an anti-depressant then let them be with others that are on anti-depresssants. The homes should be divided in two, those that do use and those that don't use anti-depressants. I maintain they are a license to kill innocent people not on any anti-depressant. What should be the objection to that? Children with inflammatory bowel disease suffer terribly, and I have written many times for the parents or whoever is close to the child to cease their anti-depressants. (or sometimes marijuana) Most will listen and even eventually usually those that do not believe will listen. This has no easy answer, but it is easy for those unaware of the consequences of being in the environment of anti-depressants to become illl with conditions that have nothing to do with their organically body illnesses, and die prematurely.
I am not trying to argue, I just feel people should be safe from environments that harbor anti-depressants where they did not choose to be in. Gail Michael The worst part of this illness ( it produces Crohns ) is that the people involved do not have to be in the same room for the crohnie to receive the harm, they can be miles and miles apart, still the damage continues. Only the MIND AND STIMULANT are at work. I will agree it is weird and barely perceptible, but that is the strange cause of crohns, and they can research a hundred years, and never find the cause, because it is so strange. (And they are spending billions on research) All I can say is good luck to the researchers Their treatments are good, but that is not attacking the cause.
> I don't have AD (yet?) and I have been on and off anti-depressants for > years. I have been taking Paxil for about 20 years, and if I don't, I cry [quoted text clipped - 19 lines] >> one minute to the next, and even if they have talked out their fears, >> they don't remember the answers, or the assurances. deerwoodflower@hotmail.com - 27 Nov 2007 04:08 GMT On Nov 21, 10:18 am, "news.chi.sbcglobal.net" <kureforcro...@sbcglobal.net> wrote:
> Anti-depressants are a very complicated issue. They work very well with no > side effects for the user of the anti-depressant. [quoted text clipped - 66 lines] > > >> Evelyn This is by far without a doubt the stupidist thing i have ever heard of in my 57 yrs.I have taken an anti-depressant for years and could not live without it.I cry ,get angry,etc.My mom started taking one when she started wanting to kill herself.It has helped tremendously.Even you say the affects are barely noticeable.How is it you have noticed them? although i am sure there are some side affects maybe i would much rather be happy than crying or hearing my mom say she wants to kill herself.And to say one can get krohns from someone who is on them is insane.My sister has krohns so maybe i gave it to her .LOL,Barb
news.chi.sbcglobal.net - 29 Nov 2007 01:34 GMT Difficult situation, depends on which side of the fence you are. The one taking anti-depressants or the friend or relative not taking an anti-depressant. I know the good they do, and have very beneficial effects and I also know the horrid effects to the person related in mind who gets the side effects (yes, crohns disease, whether you can accept it or not) Crohns is the only illness I know that is transmitted by the mind (along with a stimulant) so I talk about no other. I am happy for you and your mother, but sorry for your sister. Is her illness intense or just an inconvenience. I have lost much of my hearing and some eyesight to crohns. So I am on the other side of the fence. And my friend in the nursing home is not the only one that suffers. The ones that socialize are in danger and suffer also. No one can know what crohns feels like unless one experiences it. Again I say, they should divide the nursing homes into those that use anti-depressants and those that do not. That way, everyone can take their chances in the home they want to be in. Strange, weird, is this whole matter, and I am not telling anyone not to take them. But knowing what I know, I would not take anti-depressants. Stress is a big part of crohns once it develops, so your sister should try to avoid stress where possible. And I don't like to give advice. But Valium is a big help for stress, but getting it from the doctor is like asking for the moon. There is that much unknown about anti-depressants, that they kill without one realizing what the death ACTUALLY occured from. The doctor only know what he sees, and what he sees is not the real underlying cause. It is not a pretty picture. Your mother would have had to be counselled years ago before there were anti-depressants. Gail
> This is by far without a doubt the stupidist thing i have ever heard > of in my 57 yrs.I have taken an anti-depressant for years and could [quoted text clipped - 6 lines] > who is on them is insane.My sister has krohns so maybe i gave it to > her .LOL,Barb deerwoodflower@hotmail.com - 29 Nov 2007 04:03 GMT On Nov 28, 7:34 pm, "news.chi.sbcglobal.net" <kureforcro...@sbcglobal.net> wrote:
> Difficult situation, depends on which side of the fence you are. The one > taking anti-depressants or the friend or relative not taking an [quoted text clipped - 34 lines] > > who is on them is insane.My sister has krohns so maybe i gave it to > > her .LOL,Barb Gail, My sisters krohns is more an awful inconvienience.Diarreah all the time.Barb
news.chi.sbcglobal.net - 29 Nov 2007 11:37 GMT Barb, there is over the counter herb Valerian which is for sleep, but does reduce stress. Effects last only a couple of hours, but better than nothing. If ever there is a day you and your mother do not take anti-depressants, try to notice if your sister is feeling better. I will not tell you to present such a day but I am almost certain your sister would have a day off from crohns. Good luck to all. Gail I put up with this in my family. I cannot convince my sister her constant urinary infections are due to her son in law's Paxil. She suffers and I suffer with her. It does sound incredulous, but I know it to be true. Gail
> On Nov 28, 7:34 pm, "news.chi.sbcglobal.net" > <kureforcro...@sbcglobal.net> wrote: [quoted text clipped - 52 lines] > My sisters krohns is more an awful inconvienience.Diarreah all the > time.Barb EddyJean - 20 Nov 2007 06:13 GMT Gail, I wholeheartedly agree with your assessment on anti-depressants. The word "Nursing Home" is a misnomer. Residents on low-salt diets fed barbecue beef, pork & beans and potato chips!!!
EddyJean
news.chi.sbcglobal.net - 26 Nov 2007 15:03 GMT Thinking of demonstrating against anti-depressants. Have several signs made up, shirts, balloons, etc. but no car. Live north side Chicago, IL Opinions on the idea and if anyone can join. and its cold outside. Very important , see the use of anti-depressants permeating everywhere, and I know the danger from one person to another. They harm by simply the mind going from one person to another if they form any connection Gail Gail
> Gail, > I wholeheartedly agree with your assessment on anti-depressants. The > word "Nursing Home" is a misnomer. Residents on low-salt diets fed > barbecue beef, pork & beans and potato chips!!! > > EddyJean Mary_Gordon@tvo.org - 15 Nov 2007 11:57 GMT Sarah, my MIL died of end stage AD. It was very slow. However, she had lost intelligible speech, and her ability to walk about two years before the end. She spent her days propped in a wheelchair or in bed, essentially dozing. Her eyes were blank, she reacted to her environment very little. Totally helpless, spoon fed etc. When she went into the final spiral, she started eating and drinking less and less. She'd push your hand away, spit things out, refuse to open up, despite careful coaxing. It took about 6 weeks in total. She got weaker and weaker, took in less and less. Just brutal. It was just awful because it was so incremental.
We prayed for something to carry her off - she was just so darned healthy in every way other than the AD, there were no chronic illnesses when she got to the point where they might have helped her mercifully along.
Most people don't actually die from the AD - they die from their other chronic illnesses or even acute illnesses like infections, that the AD has make difficult or impossible to manage or treat (or the family elects palliative care and lets those other illnesses follow their natural course). They get pneumonia, their heart condition or lung problems get worse from being bedridden, some cancer advances, their diabetes causes complications, whatever - and those factors end up being the ones that actually tip the egg that is balanced on end. The actual end of life from AD itself in an otherwise healthy person can be very, very slow - and worse, very unpredictable.
Remember back in the 1970's when Francisco Franco of Spain was dying, and it seemed like it would never end (the press kept reporting death was imminent and he lived on - and the process became the butt of jokes on news parody shows like Saturday Night Live i.e. Its Saturday, and Franco is STILL dying. You can't find humour in the misery of their end, but it becomes a kind of black absurdity. I mean, what do you say to family and friends who ask over months and months - yes, things are terrible and getting worse. I told you she was dying four months ago, and yes, she's still dying...just in microscopic increments.
Its just not like any other disease, is it.
M.
Bev - 16 Nov 2007 01:11 GMT > My mother's AD has progressed to the point where she is having difficulty > walking, talking, doing just about everything. For a while, she was [quoted text clipped - 9 lines] > > Sarah I am a home health and hospice nurse, who has lurked here for several years, and have learned so much from all of you. I have used the information you all share in my practice, and sometimes send family members to this group for support. I did want to say that for someone to be placed on Hospice, their doctor must state that "this illness, if it follows it's usual and expected course, will be terminal within six months". The key words are "usual and expected". I have had patients on Hospice for 1 1/2 to 3 years. I understand the roller coaster ride this must be for families, and wish I had something to offer that would be of comfort to you. Unfortunately, Alzheimer's has periods where is waxes and wanes. It is, in my opinion, one of the cruelest of diseases. I wish you peace. Bev
|
|
|