I need some help. Anyone that knows anything - about what I am fixing to talk about.
This is what I need (which is going to be hard to describe): I would like to give my father and mother - but especially my father, a short version of a book on Alzheimers. Like 1 - 2 pgs. at most. Just short and simple, so that my father could read it and possibly understand it - at his best day and best moment!
None of us, or any of his doctors, have ever really sat him down and told him what his disease is and will do to him. He knows a few things, but not even 3/4 of what is going on or will eventually happen to him. Some friend gave him a book, but he was too far along to read it. It was too complicated for him, when he was diagnosed. We believe he had AD for at least 2 yr. before being diagnosed. If you know of anywhere, that I could print this type of info from on the net, just direct me. I could write one myself, but it would not be taken as gospel, like if it came from some one or some place else! And some of you know me (like right now!), I do tend to ramble on and on! :>
We were talking - just the two of us, my dad and me - about his DPOA, Living Will, and real Will. He brought it up. He waited til my mom was gone doing errands, to talk to me about such things! He knew that she would pitch a fit!!! He seems to be having a spell of clearer mind. At least for the past week. I do not know if it is because he has no stress right now or because of his Aricept having been upped to 10 mg from 5 mg.
Anyway, my Dad (who has 5 - 6 level) Alzheimers, seemed to want to do the legal papers. But, we all know, how that goes. They talk about something one day, and the next day have completely forgotten that they wanted to do it!
So, I was telling him that he needed to hurry and get the DPOA done, because they will only do it if the lawyer thinks that he completely understands what he is signing and doing! And he was looking at me like he did not know anything about, not being able to understand things in the future! And I told him that when he does make his appt. with the lawyer, that they choose (they do not want me to help & do not want to use my lawyer), that he should make sure it is a good time of day for him. And that he should make sure it is a good day for him - like a day, when he had not worn himself out the day before. When he runs around all day, it takes him 2 days to recuperate (so he would tend to act confused at the lawyers).
I tried to tell him in a kind way, that if the lawyers even suspects that he does not understand or if he acts confused and keeps asking him to tell him what the same thing means again and again, that the lawyer will not let him do the DPOA. He was listening to me and I hope retaining some of this. But he did act like he had never heard of such a thing or even thought that this might happen?!!
I know, I am rambling again. Just trying to make yall understand why I need this description, this definition, this explanation of what Alzheimers is doing to him and will do to him. Help!!!!! The more I typed, the more confused I get on how to get this across to him and to my mom (level 2 - 3).
Thanks for listening, if you have gotten this far. Any words or thoughts will be appreciated.
Take care. Love, Wannabe
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What is Alzheimers Disease?
Alzheimer's disease is a physical disease which attacks the brain cells (where we store memory) and brain nerves and transmitters (which carry instructions around the brain), which causes a progressive decline in the ability to remember, learn, think and reason. It was first described by Alois Alzheimer, a German neurologist, in 1907.
What are the Symptoms?
Typically Alzheimer's disease begins with lapses of memory, difficulty in finding the right words for everyday objects or mood swings. Mild symptoms may be a natural effect of ageing, but in Alzheimer's disease a pattern of problems emerge over time. As it progresses, the loss of the ability to think or reason become more and more marked. Simple tasks can become impossible and as the disease takes hold, people become less aware of their condition; though they can still experience anxiety and distress. The course of the disease varies from one person to another and the decline can be rapid in some people, gradual or uneven in other. In all cases the family and friends of people with dementia are put under enormous strain.
There is no cure for Alzheimer's disease and none is likely in the near future, but prospects for management have improved. New drugs are being developed which seek to slow down the rate of mental decline. These are promising in the early stages of the disease , although it is unclear for how long they can help and other drugs are now available for people with more severe dementia.
How does it affect carers?
Dementia not only affects the person with the illness, but every family member and friend. The person they love disintegrates and relationships change with new and unexpected demands placed upon them. It is important for carers to remember that they have needs of their own that have to be addressed.
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Basic facts about Alzheimer's disease
Alzheimer’s is the most common form of dementia and accounts for at least half of all dementias. It causes about 23,000 deaths a year in the United States, making it the eighth leading cause of death in the elderly population. Alzheimer's disease is named after Alois Alzheimer, the German physician who identified it in 1907. The cause of Alzheimer's remains elusive and resistant many treatments.
People with Alzheimer's disease have an atrophy of the cortical tissue within the brain. When examined at autopsy the brain shows abnormal fibers that appear to be tangles of brain tissue filaments (neurofibrillary tangles) and senile plaques (patches of degenerative nerve endings). This damage is believed to cause disruption to transmission of impulses amongst brain cells. It is this damage that is thought to produce the symptoms of the disease.
People over the age of 65 are most frequently affected by Alzheimer's and it is termed ‘late onset’.
So-called ‘early onset’, a very rare form of Alzheimer's disease can develop in people as young as 30 and in middle age.
Hope for the Future
Government funded research into Alzheimer's occurs almost everywhere throughout the world. Drug companies, academic institutions and medical facilities are working to find a cure for Alzheimer's disease. As people are living longer many more are suffering from the disease. It is in everyone's interest that a cure is found as soon as possible.
Alzheimer’s disease is recognized through a number of signs and symptoms. The Diagnostic and Statistics Manual (DSM-IV) identify these as:
The development of multiple cognitive deficits manifested by both memory impairment and at least one of the following cognitive disturbances:
Disturbances in executive functioning.
Significant impairment in social or occupational functioning, along with significant decline from a previous level of functioning, Gradual onset and continuing cognitive decline.
What the terms mean
Cognitive – mental activity such as thinking, attention, reasoning, decision making and dealing with concepts.
Aphasia – a disorder of speaking in which the person has great difficulty in articulating words.
Apraxia – a disorder of movement caused by damage to the brain.
Agnosia – a disorder in which the affected person is unable to make meaning out of one or more of their senses (sight, hearing, touch, taste, smell)
Executive functioning – the process of bringing together and coordinating information for a purpose (usually decision making). Memory is an important factor to enable effective executive functioning
Alzheimer’s begins with mild memory problems, attention lapses and difficulty in recalling words thus making communication more difficult. As the disease progresses simple tasks become difficult or impossible to achieve. Distant memories begin to fade, familiar faces often go unrecognised and changes in personality become noticeable.
During the final years of his presidency, in the mid to late 1980s, Ronald Reagan revealed bouts of forgetfulness during public engagements. It was not until 1994 however that doctor’s agreed a final diagnosis of Alzheimer’s. In fact Alzheimer’s cannot truly be confirmed until autopsy.
People with Alzheimer’s disease can live anywhere from 2 to 20 years. When people are first diagnosed they often become depressed, anxious or agitated.
As the disease progresses people with Alzheimer's disease may become uncharacteristically aggressive. Over time people with Alzheimer’s become less and less aware of their limitations.
The later stages of Alzheimer's are characterized by greater confusion, disorientation and dependency on others. Physical health often begins to deteriorate as activity levels decline and more time is spent sitting around or lying in bed.
At present there is no medical treatment that cures or stops or reverses the progression of Alzheimer's disease.
There are a number of drugs approved by the FDA (Food and Drug Aministration) that help some people with Alzheimer's disease short term, they are;
tacrine (Cogex), donepezil (Aricept), riastigmine (Exelon) and galantamine (Reminyl renamed Razadyne June 2005 ).
There are many medications and treatment approaches that help with behavioral and physical difficulties experienced by someone with Alzheimer's disease.
Good caregiver skills, love and friendship can provide one of the best treatments that results in a good quality of life for someone with Alzheimer's.
Advances in research and technology brings hope for more breakthroughs into Alzheimer's disease in the future
Trying to keep it simple here ... ???
My MIL was diagnosed with dementia. The doctor said there was no point in telling her because she a) would forget or b) wouldn't understand or c) deny the entire thing and cause more problems.
It's a personal choice. We do believe educating our charges will help them in their journey with the disease, but I think it's justification in ourselves in letting them know what's wrong. Be careful, this is a touchy area.
Last edited by mustang_sally; 10-07-2005 at 07:07 AM.
Reason: Things to add ....
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My Mom was never told. She believed she was having a lot of 'senior moments' .. caused by old age.
I am sure if anyone had told her she will degenerate more and more until she is totally helpless, she would have 'given up'. Like she has now. But she got through a few years of Dementia with good spirits because she didn't really know how bad it would get.
She signed the POA papers because the agency asssigning a home health aide insisted. Easy: you need to sign these papaers so we can get a helper for you.
I would try to explain it to him in a simple way that does not mention Alzheimer's or Dementia .. but it's like doing a circus act to get it right.
Note to all younger, healthy, mentally fit people; it is a good idea tomake out a living will, health directive and/or get POA and give it to a trusted child, spouse or friend NOW while you can think!
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Thanks to both of you for your fast responses. I read them earlier, but just now got enuf time to re-read and post. Everything that yall said makes a lot of sense. Does anyone else out there have any suggestions or can any of yall say if you told your loved one that they had alzheimers and if they knew or know what that word/disease is???
My dad knows that he has alzheimers and parkinsons. His neurologist told him and he likes to be told, so he can try to say the correct thing to his doctors, which medicine is for which illness. So far, I do not think he remembers 10 min. after I tell him!!!
Sally, I will print the things you posted. I for sure will keep them. I may show them to my mom or not? I will for sure show them to my sis and ask her if we should educate my dad and if he would want to be educated or in the flow! I may cut and paste them for my dad?! I guess, I should think about it, before I give him too much info on his alzheimers disease, just in case he would give up. But, he is the type of person (an engineer), that likes/liked to be precise and have everything lined up in a row. He knows, for instance that he is writing smaller and smaller, because he has alzheimers. He knows some parts of his AD symptoms and some parts he thinks are because of something else or not anything at all. I guess he does not see (or feel) some symptoms or actions/non actions, because of his disease?!
It is just that he is in such good mental shape at the moment. The doctor (family) said to him today, that that was the most intelligent and beneficial conversation they ever had together. That he was in good shape except for having the two illnesses (alzheimers and parkinsons). He had just had a bunch of tests done. I do think my dad likes to go to the drs. He just likes to get and give info right to the horses mouth! And it makes him feel better to go. For awhile!!! :>
Sally, my father, definetely would not understand, if I told him. If a doctor told him simple and true, he might - but then prob. would not remember, later. If he has a printed short paper that he can reread and show anyone that he care too, he might would like to have something like that?! He does read and reread parts of his copies of DPOAs and Living Wills and his Will. So, he understands those for a while after he reads them?! What to do????? It just seems like we are keeping some things from him, that if he was in his right mind, he would not like that being done?! Does that make any sense?
Martha, was the home health aide (company) paid for by Medicare? I think that if my parents, as they are now, would only hire someone, that is a friend of someone they knew. Then no DPOA would have to be signed (but that is not why they would hire that type of person). Only if something happened to my mom, would a company be hired. Do any of yall know, if when a person goes into a NH, Alz. assist. lock down, or ASL place, do they have to have a DPOA signed then?
Well, ladies I have talked long enuf. Thanks for the mucho info and I greatly appreciate any and all help that yall will give and have already given!
Wannabe, in Mom's case Medicare refused to pay for it. She had 'too much money'. This is funny in a bizarre way because she lived on Social Security alone for 27 years ..but somehow it was still too high to qualify for Medicaid, which does cover HHA's.
The HHA Agency charged $19 an hour, of which the Aide herself got $8. There was a lot of flak being shot around because of the cost, and I was the target. My sister said "Why don't YOU stay home from work - quit your job - since you earn less than the Aide costs," Etc.
Mom told her "we would both go crazy if she stayed home all day!"
Then they decided to split the cost 3/5 to Bill, 2/5 to Elsie. I was allowed off that hook because I had no money and the round the clock care of Mom after work and on weekends. And to limit it to a 6 hour day, even though I was out 8 to 9 hours.
I worried myself silly about the 3 hours Mom was alone.
Originally Elsie agreed to pay half of a 4 day week. The idea was that Mom could be alone one day - if she would just stay in the apartment. The one day she was alone was a disaster .. She went to the pool, swam, and then waited there for hours for 'my aide to come back.' Finally the pool personel walked her home. She insisted to me that the Aide had been there, taken her to the pool, and disappeared. When I said she was off, she was not scheduled to work on Fridays, Mom insisted she had called up and said she was coming.. Later she changed that to "I called HER and asked her to come."
After that disaster we extended it to a 5 day week and Elsie refused to pay her half of the 5th day, saying, "I don't think it's necessary."
After moving Mom to Bill's house, they gave up having an aide come in and she shadowed him all day long. He took her with him everywhere he went, even to their house closing which she thought was a barbecue, and kept interrupting to ask when the chicken would finally be ready ...
Some of it is funny - most of it is scary ...
Last edited by Martha H; 10-08-2005 at 12:06 PM.
Thanks for the story and the information. Part of it is funny, if it is not you and not your relative!!! :> Sometimes we laugh at my parents (when they are not with us) and sometime we laugh with my parents when we are with them! They tell stories on themselves all the time! And my mom tells me things that my dad says and does just to keep me informed (when he is not around).
I guess when we do get someone in to help them, be it just watching after and making sure they take their pills, it will be some one cheaper. My mom would not allow it - if it cost that much $. When it gets worse, we will have to have someone to help my dad bathe, and get dressed every morning and breakfast and pills and lunch and pills and then be on their own for the evening? I do not know who would make sure they take their evening pills??? The scheduling sounds like a night mare!
I guess we will cross that bridge when we come to it. But, I think I will check into places, and people that do that kind of care and the costs and such. They would need to be bonded, tho. If my mom had to go into the hospital, because of her diabetes, my dad could come and live with us for a short time. That is no problem. Just not long time living!!! I would be totally bonkers! We would have to put him in a care place, if something long term happened to my mom!!!