My Mom and I can't figure out why, but they sent my dad to the e.r. today by ambulance. They called mom early in the day to let her know that he had hit his head on a paper towel holder in the bathroom but that it was nothing to worry about. He had not even broken the skin and he didn't seem to be affected by it at all. Then, later in the afternoon, they called and told her that they were sending him to the e.r. because he was halucinating and acting really strange. He has been halucinating for over a month, even before he went to the NH.
The e.r. doctor could not figure out why they sent him either. He didn't seen to be acting any stranger than usual to us. The NH personnel said that they did not want to keep giving him haldol(sp?) every time he acted up. Then they went on to say that he had not gotten agressive, I don't see how he was "acting up" in that case.
He halucinates a lot, acting like he is working on something or taking something apart, and also picking up things that are not there.
Has anyone else seen this kind of halucinating with AD?
In answer to you question about hallucinations, my mother saw her deceased sister several times. Her repeatitive action was to fold and refold Kleenex constantly while awake. Go figure?!
Isn't is a bummer when the issue seems to be the NH trying to avoid a lawsuit rather than good patient care? Your Dad's NH sent him to the ER after he bumped his head and he continued to act normal for him. Duh! It's not as if new odd behavior signaled a head injury or he had a real head injury symptom.
The NH where my mother was did the same thing. Before she had a wheelchair, she used a walker and went over backwards 4 times in 4 months. Each time she was sent to the ER even though she needed stitches only once and had not one head injury symptom. After the 2nd CT scan at the hospital, I was able to have a note added to her record that unless she had definite symptoms of a head injury, they'd have to contact me before doing a CT scan. The hospital had a copy of her Living Will and DNR order in her records. I made sure those notes came up in the hospital computer when her name was typed in, too.
When the time came that mother was losing weight even though she ate well (with help), I knew the end was near, so asked her doctor to order "comfort care" and that meant no ER trips unless she was in pain, was bleeding, or had a broken bone.
It's not easy to know what to do, so do the best you can and don't fret about it later. Be nice to yourself!
I know my Dad would not want to live this way. My mom has a his living will, poa and she also is his legal medical surrogate. She told them she did not want them to send him to the e.r. for minor things like that again, and that she does not want them to force feed him. The floor nurse had a problem with that and said mom would have to talk to the doctor and get him to okay those things before they could do that. She is afraid that if they do not try to force him to eat, the state inspector will have a problem with it.
I guess mom will have to put everything in writing for their file before they will follow Dad's wishes. He made them perfectly clear to the whole family. It's almost like they want to drag this out as long as they can. This has got to be the worst possible disease you can have. I can't imagine one any worse. Some say it would be worse to have your mind and be trapped in a body that is failing, but I say at least that will only last as long as your body holds out, which is usually not very long when you think about some alzheimer's patients lasting 20 years and not having any idea about what's going on around them or who anyone is.
I really hate this disease and I pray that God will end my Dad's suffering soon. No one should have to die this way. It's horrible to watch your loved ones slowly disappearing, and once they've disappeared, except for the shell that's left behind, it's even worse. He's incontinent, (which is the thing he would hate most) he can barely speak, and then only gibberish, he recognizes no one, and he is now only eating morsels at a time, and will only eat with his hands. To think that this man, who was an electrical engineer, and project manager over the building of large power plants and thousands of employees, has now come to this is the most horrible thing that one could every imagine. No, you could never imagine anything as horrible as this. To think that his soul is trapped inside this vessel for who knows how long, is a cruel thing to happen to anyone.
Now I need to call my brothers and sisters and try to explain how much worse things have gotten and I can only imagine how much worse it will get before the end. I can not imagine this going on for years, even months is too long.
Does anyone know anything that could be encouraging? That movie "The Not*****" could not be any further from the truth of what this disease is really like. Once you lose something, you never get it back. He never has any flashes of memories. That must be some other type of dimentia because it doesn't even remotely resemble what's happening here.
I guess I didn't make myself completely clear in the earlier post - your father's doctor will have to write orders on your father's chart at the NH after your mother lets the doctor know what her wishes are. She knows as you do, what your father's choices were. He told you all when he was able. That's what the doctor must be told. Copies of the legal papers that give your mother the right and responsibility to speak for your father should be in your father's charts at each of his doctor's offices as well as in the NH chart. The doctor's order for "comfort care" will address your father's wish to let nature take its course and still satisfy state requirements.
AD is a horrible, sad disease. People with AD die from other causes at different stages of the disease. Perhaps that movie (which I have not seen) had the character die before end-stage or made it prettier. Until my mother got to about stage 6 she had flashes of memories. Even in stage 7 she took delight in the birthday song and tried to sing along.
KamSue: My mother is in her last days. She started refusing food about 3 weeks ago - had sustained a head injury that required stitches at the ER - from falling out of her wheelchair at NH. Althought CT and drs. at ER said no "brain" injury ... she completely stopped eating after that "accident". She is now on day 8 without any food or water, only oxygen and comfort care. You might want to think about another NH if possible. If you and your family are not happy with the care your Dad is being given, it might be worthwhile for your peace of mind. I know in FL that all NH evaluations are public record and are on line. I did my research before finding a NH for mom. It was hard because in FL almost ALL NH are now going short term only and will only take patients if they come from a hospital. Keep us posted on your Dad's situation. This is very hard - I am counting the days literally. Even though Mom has not had anything to eat or drink she was really alert when I visited yesterday - the staff is amazed as am I. I know it is only a matter of time but it is hardest on us, the ones who are aware and watching and waiting.
My prayers are with all of you in this situation. Sadly, AD does cause death, ultimately. I don't think anyone lives 20 or even 10 years - or even 5 - once they have reached a stage of complete dependence, more like a few MONTHS.
It is, in my opinion, the worst thing that a person can get, which is why we have to support stem cell research and anything else that might lead to a cure.
My brother bought and paid for Mom's funeral yesterday - so bizarre, since she is still alive - but this was one of the ways to spend down her remaining money so she can get on Medicaid. It was a horrific task to have to pick out a coffin , flowers, pay cemetary fees for reopening my dad's grave, etc etc ..yet during her (now very limited) lifetime. I expect to be in the same boat as the two of you before much longer.
I highly recomment hospice care for the final stage - I know someone who works at one of them and it is an entirely different atmosphere. You would think that, waiting for death, it is a gloomy place. But that is not true at all. It is a loving, caring, friendly and optimistic place. Seems odd, but it is true.
Martha, we had neighbors (a husband and wife) who thought choosing everything for their funerals and paying for it ahead of time was a very good idea. They suggested it to my dad and mom about 15 years ago. Dad and mom thought it was far too morbid to even consider. The neighbors had recently retired and seemed to be in perfect health when they suggested this to my parents. Well, a few months after, the husband started getting sore throats and a gravelly voice. He went to the doctor and found he had inoperable throat cancer. He was going to die. A few months later, his wife had a fatal stroke. Three weeks after his wife died, the husband also passed.
Having their funeral arrangements already finalized helped their son and daughter immensely. Could you imagine having to go through that for one parent and then having to do it again three weeks later for the other?
Bill having done this already is going to make it less stressful for everyone when the time does come.
And the money is being spent down very wisely.
God bless you and Bill for being so thoughtful and caring.
How long has your father been at this level of AD? And how long ago did you say he had been diagnosed? My father is 78, and is probably a 5-6 level. Just depends on the day, time and week. He was/is and engineer too. It is really sad to see such a smart man, not be able to pay his bills or do his taxes. And he tries really hard to still do things, mainly tries to understand why something is so.
He is not in a NH yet, like your father. It may change in 2006. He hallucinates sometimes, like your dad. Mostly at night, and in his bedroom. And he will hallucinate, if he gets too much and/or certain kinds of meds.
This is just my opinion, but - I think that most Alzheimers patients do not live with this disease for 20 yrs. I think it is more like 5 or 10 yrs. My dad has been diagnosed for over 1 1/2 yrs. But, we think he had it for several years before that. We just were in denial I guess (all of us, including him).
The only thing that I can tell you (as I am not experienced in the NH situations), is to research and ask lots of questions. Also make yourself heard, when it comes to your dads care!
I'm sorry it took me so long to get back with you.
I believe I have already posted this somewhere else but I'm not sure if it was on this board or not. My dad passed away last week. After he was no longer to chew or swollow, we were able to bring him home with the help of Hospice and my sister, who has worked in hospice for 9 years. We brought him home and thought we would have at least 10 days to 2 weeks, but he died the next morning. He never did follow our plans anyway, he always had his own idea of how things should happen and that held true to the end. He came home Saturday, had a very peaceful night, and died on Sunday morning.
That is definately how he would have wanted it to happen. It really confirms ones belief that God does answer our prayers. We would have liked to have a little more time for all of the family to come home, but for Dad, it couldn't have been an easier passing. And in the end, he really didn't last very long once the AD got bad. That's exactly the way he wanted it.
I will pray for each of you that your outcome is as peaceful as ours was. Dad's life may not have been real peaceful, but the end was.
Thanks for all of your kind words of encouragement and just being here for me to vent when I needed it. This is a great message board and I will continue to visit from time-to-time and pass along any encouragement I might have for anyone else.