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Old 06-01-2012, 07:43 PM   #1
shadowryter
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Please...help me to understand Alzheimer's

HelloÖSome of you may know me as a DISigner here on the DIS. I design because I love to add a little magic to peoples trips and celebrations. I design to keep my sanity. I am an adult daughter of a father who has recently been diagnosed with Alzheimerís, though Iíve noticed the gradual changes in him over the last 10 years. For almost a year he has refused to take his meds for his condition or he would say he did and toss them out. I know heís in denial, who wouldnít be. He is argumentative, mean and just plain hateful at times. And then the switch is flipped and he is just fine. He steels money from his joint bank account for his lottery tickets, gets lost when driving and by the way blows straight through stops signs.

He and my mom argue every day, her reminding him to take his meds and confronting him about lie after lie. The little things that were so easy for him are now a major production. He leaves every light on in the house, water running, doors unlocked. He lost his wallet one day and we spent hours searching for it just for my husband to find it in the refrigerator. He had a doctors appointment which he insisted on going to on his own and ended out 3 towns over.

Yesterday my mom asked him to trim a couple of branches from the shrubs in the front of the house; a two minute job. He returned 45 minutes later and when I looked outside I saw that he had hacked a good section of the shrubs to the ground. No going back there.
I made him a special lemon cake for his 79th birthday and after the fiasco with his lack of topiary skills he was so mean and hateful to me and my mother that she served the cake without him but only after he told her he didnít want it in very colorful language. My mom cries a lot.

Iím told that this will only get worse and Iím not sure how to deal with it. I have a lot of things on my mind. I worry about him. I love himÖheís my dad but I donít like him much at the moment. I worry about my mother because she is not well. She has heart problems, diabetes, high blood pressure, thyroid, not to mention osteoporosis and macular degeneration. She depends on a walker and is almost blind in her left eye. I basically take care of her, her meds and insulin.

My family and I moved in with them when the company my husband and I worked for closed their doors. My husband and dad butt heads constantly. My dad is mean to him, to me and our grown daughter. My husband wants to move out but places are hard to find and though I want to do this, I have such a fear in my gut that tells me my mom will not last once Iím out of the house. Iím afraid if we go and something happens to her I will blame my father, myself and possibly my husband for pushing this move. Also since we pay rent and half of all utilities thereís a good chance they would loose the house with not enough income, especially the way my dad loves to spend money that they donít have. I donít know what to do anymore. I know Iím not alone. Iíd appreciate any words of advice and wisdom. Thanks so much for reading this.
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Old 06-07-2012, 07:56 AM   #2
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I'm sorry to hear your family is having such a difficult time. We had something similar happen in my family as well.

I actually spent an hour yesterday writing a post and then lost the whole thing.

I don't have time today but will leave you this to get you started.

I found these articles by googling Alzheimer's aggression. There were lots more that you will hopefully find helpful.

You need to get some help with this, it's no way to live. Good luck.

http://alzheimers.aplaceformom.com/a...rs-aggression/

http://www.helpguide.org/elder/alzhe...r_problems.htm
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Old 06-11-2012, 01:08 PM   #3
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I am so sorry that your family is going through this. Alzheimer's is a monster. Until people have known someone afflicted with this awful disease, they commonly think that it involves only forgetfulness, but it is so much more than that.

My husband's mother, now 93, has Alzheimer's Disease in addition to some other very serious health problems. She lived with us for 18 years, up until 6 months ago when she was placed in a nursing home. She has had ALZ for about the last 8 years and is entering the last stage of the disease. She can no longer walk, feed herself or do anything at all for herself. She requires 24/7 care, and due to some circumstances in our own family it was just impossible for us to handle her care any more.

Your dad's symptoms, from getting lost to forgetting about his meds to the personality changes, are all classic symptoms of ALZ. I would recommend an excellent article that helped us to understand what was happening with MIL - I do not know if I can post the link, but if you Google "Understanding the Dementia Experience" by Jennifer Ghent-Fuller, you will find the article. I can also recommend a book called "The 36 Hour Day." Both of these were invaluable resources to us when we were caring for MIL. If you, your husband and your mom can read these items, you will all come away with a greater understanding of what you are dealing with and some positive ideas about how to deal with your dad's problems.

You should also Google the local Alzheimer's Association chapter where you live. They have a 24/7 hotline that you may call with questions, or if you just need someone to talk to about the situation.

Your dad should not be driving. In addition to being a danger to himself, he could injure or kill an innocent person. It is very important that you get the car keys away from him. He will be angry about this, no doubt, but he can no longer reason and cannot make decisions about life or death issues. I know of families who have actually mechanically disabled their loved one's car to be sure that they would not drive. His medications should also be managed, since he cannot remember if he has taken them and this symptom will not get better. If he has other conditions, such as high blood pressure or heart disease, it is important that his medications be given as prescribed.

Your dad is not really in denial. One of the symptoms of ALZ is called "anosognosia," which is basically the false belief that everything is fine. The patient truly has no understanding of what is happening to him and basically thinks that everyone else is wrong.

Is your dad being treated by a neurologist, a geriatric psychiatrist or a geriatrician who specializes in ALZ? Sometimes internists/general practitioners are not as well versed as specialists in the medications that can really help these patients. You or your mom should speak to your dad's doctor about some of the symptoms he is experiencing, such as aggression. ALZ patients sometimes can become violent, so his aggression should be managed so that he is not a danger to your mom. Sometimes something as small as a very low dose of an antidepressant can help with these symptoms. If you or your mom do not have proper HIPPA authorization to speak with the doctor, the doctor cannot disclose information about your father's condition. However, the doctor can listen to you. You can make a list of the symptoms that you are observing and either call the doctor or fax the list to the doctor before your dad's next appointment. We did this with MIL's doctor, and it was very helpful as he knew how her symptoms were progressing before each visit.

You are right to be concerned about your mother. She already has health problems and caring for your dad is extremely stressful for her. The ALZ association can also provide you with information about programs such as adult day care that may provide some help and relief to your mother.

I hope that some of the information suggested will be helpful to you. I know that this is a very difficult road for all of you.
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Old 06-12-2012, 09:34 AM   #4
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Originally Posted by MinnieFan View Post
I am so sorry that your family is going through this. Alzheimer's is a monster. Until people have known someone afflicted with this awful disease, they commonly think that it involves only forgetfulness, but it is so much more than that.

My husband's mother, now 93, has Alzheimer's Disease in addition to some other very serious health problems. She lived with us for 18 years, up until 6 months ago when she was placed in a nursing home. She has had ALZ for about the last 8 years and is entering the last stage of the disease. She can no longer walk, feed herself or do anything at all for herself. She requires 24/7 care, and due to some circumstances in our own family it was just impossible for us to handle her care any more.Your dad's symptoms, from getting lost to forgetting about his meds to the personality changes, are all classic symptoms of ALZ. I would recommend an excellent article that helped us to understand what was happening with MIL - I do not know if I can post the link, but if you Google "Understanding the Dementia Experience" by Jennifer Ghent-Fuller, you will find the article. I can also recommend a book called "The 36 Hour Day." Both of these were invaluable resources to us when we were caring for MIL. If you, your husband and your mom can read these items, you will all come away with a greater understanding of what you are dealing with and some positive ideas about how to deal with your dad's problems.

You should also Google the local Alzheimer's Association chapter where you live. They have a 24/7 hotline that you may call with questions, or if you just need someone to talk to about the situation.

Your dad should not be driving. In addition to being a danger to himself, he could injure or kill an innocent person. It is very important that you get the car keys away from him. He will be angry about this, no doubt, but he can no longer reason and cannot make decisions about life or death issues. I know of families who have actually mechanically disabled their loved one's car to be sure that they would not drive. His medications should also be managed, since he cannot remember if he has taken them and this symptom will not get better. If he has other conditions, such as high blood pressure or heart disease, it is important that his medications be given as prescribed.

Your dad is not really in denial. One of the symptoms of ALZ is called "anosognosia," which is basically the false belief that everything is fine. The patient truly has no understanding of what is happening to him and basically thinks that everyone else is wrong.

Is your dad being treated by a neurologist, a geriatric psychiatrist or a geriatrician who specializes in ALZ? Sometimes internists/general practitioners are not as well versed as specialists in the medications that can really help these patients. You or your mom should speak to your dad's doctor about some of the symptoms he is experiencing, such as aggression. ALZ patients sometimes can become violent, so his aggression should be managed so that he is not a danger to your mom. Sometimes something as small as a very low dose of an antidepressant can help with these symptoms. If you or your mom do not have proper HIPPA authorization to speak with the doctor, the doctor cannot disclose information about your father's condition. However, the doctor can listen to you. You can make a list of the symptoms that you are observing and either call the doctor or fax the list to the doctor before your dad's next appointment. We did this with MIL's doctor, and it was very helpful as he knew how her symptoms were progressing before each visit.

You are right to be concerned about your mother. She already has health problems and caring for your dad is extremely stressful for her. The ALZ association can also provide you with information about programs such as adult day care that may provide some help and relief to your mother.

I hope that some of the information suggested will be helpful to you. I know that this is a very difficult road for all of you.
I think that this PP has given some wonderful advice. I, OP, am in a similar boat... my dad was kinda diagnosed in Feb. He refuses to go in for diagnostic imaging, so his diagnosis is not complete yet. (I think I finally convinced him this last weekend, and his paranoia and aggression are now mostly under control, I think thanks to Aricept.)

Does he have a diagnosis of ALZ? If not, please get him to a GP so that you may get a referral to a neurologist. Then your dad may be prescribed meds to help his condition, such as Aricept or an antidepressant (previously mentioned) that will help his day to day functioning. ALZ patients are rock stars at pretending nothing is wrong, and/or trying to cover for themselves.

I also see my parents bickering a lot. They are young (my dad is only 62) and these were supposed to be their golden years, retired and travelling. I think my mom is bitter, not only about my dad and how much she has to look after him, but also about her own health – already had 2 strokes. Aside from your father’s issues, your mom already has a lot to deal with about her own health… ask her about her feelings, not only about your dad, but about her future as well. I’m sure that losing her mobility and a great deal of her sight is scary. She’s facing a lot of unknowns, and then that is exacerbated by extreme nature of your father’s condition. If your dad can go back to basic daily functioning, it might help ease some stress off of your mom, and the rest of your family, for that matter.

Your DH – understandably, it would be hard to be in his situation, and he is understandably frustrated by it. I’m sure it hurts him to see you under so much stress, and to be “held hostage” by the situation. While on one hand, it’s great that you and your parents are both helping each other out by splitting the bills, try to have boundaries, so that your DH may have his own space that’s free of the happenings in the house. Make sure he can feel relaxed and comfortable in a place he can call his own, even if it’s just a recliner in the bedroom where he can shut the door and do whatever he enjoys. I know I always feel worn out just having to be “on” for my dad (checking that everything is done properly after he does it, etc… actually, it’s very similar to when my DD was just beginning to do things for herself). After a few days, I need a break, whether it’s just a solo trip to the grocery, or a soak in the tub with a good book.

As for driving, did you know that if an ALZ pt is behind the wheel and they get in an accident, the insurance company can deny the claim, saying that the driver was knowingly impaired? Just a little food for thought on that front…

I think in your situation, I would sit down with both of my parents and talk to them about what is going on. I would voice my concerns and have specific incidents that I have noticed. Urge them to seek help from Drs. Contact your local ALZ Assn. chapter. (ALZ.org) My local chapter has been a WEALTH of information, and a pillar of support for me. They provided me with a lot of information through pamphlets, what to expect, things I need to take care of (getting finances in place, Power of attorneys, sheltering assets, what benefits my dad might be eligible for and how to apply for them, etc.).

Most of all, try to keep your patience with your dad. This is not something that he chose for himself. Understand that it is the disease. ALZ is cruel… a torturous cruelty to the loved ones of those who have it. I hope against all hope that a cure is found. So many suffer from this disease… those diagnosed and caregivers alike.
Keep us posted. I'll be thinking about you and hoping for the best.
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Old 06-12-2012, 12:28 PM   #5
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Thanks so much for your replyís. I know Iím not alone in this situation but sometimes it just feels like that. My dad did see his GP who ran a few cognitive tests which he failed miserably. He suggested that he see a neurologist but of course this has not happened yet. He prescribed Aricept but it took more than 6 months before he finally agreed to take it and this didnít happen easily even after we found his missing wallet in the fridge or when he got lost a few towns over. He came out one morning and couldnít figure out why he couldnít zip up his pants. Well they weíre on backwards and most recently completely inside out. It was such a silly thing but we just smiled and helped him get reorganized.

He has been on Aricept for 67 days and counting. We have this and the rest of his medications in a pill taker and a log that is checked off every time he takes his meds. 9 out of 10 he takes them late. Sometimes as much as several hours but at least heís taking them. I should also mention that he has to take his pills one at a time every hour or two. He will not mix themÖperiod.

Another concern of mine and my momís is his eating habits. He eats so little during the day but tanks up on junk in the evening. You would think that would at least balance his weight but in the last six months or so he has lost 30 plus pounds. He looks so fragile and we worry that something else might be wrong but he wonít go for any kind of diagnostic tests and belittles those of us that do. Also he has turned into a hoarder. We try to keep in hidden but I shudder every time the cable guy comes because he has to crawl over the junk in the basement to check the wiring. If I want to toss something out I have to hurry up and hide it before trash day or heíll rummage and Iíll find it in the basement. My parents bedroom is a disaster: you canít even walk through the door without piles of VHS tapes falling over. This is particularly difficult for my mom who gets around with a walker.

My parents argue every day, usually over his meds but mostly when he looses something, and he tells her, itís all HER fault. No matter what he misplaced. Then a few hours later itís as if nothing happened at all. My husband is another situation. Heís a great guy but my dad and him have never seen eye to eye. We should have moved out years ago but now I worry that it will never happen. DH works almost 60 hours a weekÖ7 days a week. I only see him a few hours a day and bit longer on the weekends. He canít really relax because dad is always in his face about something. DH is the kind of guy that works hard and when he has some quiet time heíd like it to be quiet. No chance of that happening. But he reminds me from time to time that heíd rather be at work than at the house. Itís not his home, just a place where he lives. He doesnít believe that dad is ill, just a bully. So frustrating. (in the past yearsÖyesÖdad has always been a bully. When me met my mom until today. That part of him has never changed.)

My mom told me that she wants to make out their will and that sheís leaving me the house and everything in it. If worse comes to worse she wants to give me power of attorney over her affairs but dad would be another question. It is his house and no one is taking over. Heís fought me every step of the way when I replaced the old stove, refrigerator, central air conditioner and wall to wall carpeting. ďTheir taking over,Ē he would chant over and over again and this has been it the last ten years. No satisfying him at all.

It was quiet the past few days. Dad was remembering to take his meds, not too much arguing but then yesterday is decided to put air in the tires of the lawn tractor. Around 9 pm last night we felt an explosion that literally rocked the house on itís foundation. After a search of nearly 45 minutes we discovered that one of the tires completely blew apart. Turns out he put 35 lbs of air in a tire that held only 14! I think he thought he was filling the tires on the car. Iím only glad that this didnít happen while he was filling it.

Thank you for all the information you have sent my way. Iíve bookmarked the sites and am going to check into my home town to see what info/help can be found. Iíll keep you all updated. It was just so good to hear from you. Thanks again.
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Old 06-18-2012, 07:43 PM   #6
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Besides getting your dad to a neurologist or whatever they're called, you need to consult an elder care lawyer - you may be able to petition the court to become his guardian. Your mother needs to make a will NOW.

In my view there is little point diagnostic tests to find out if he has some other illness going on - you know he has alzheimers - even if he does have something else going on he won't take the meds for it. Do they have long term care insurance?

My mother in law was in the same situation. We ultimately had to put her in a nursing home locked unit. She had become a danger to herself and others.
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Old 10-04-2012, 02:26 PM   #7
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I am in no way an expert in this field. I have just dealt with many of these issues you have.

My mother in law had many of the same issues after having been diagnosed with Parkinson’s 15 years early. She eventually developed dementia. She was getting very snippy, not taking her meds, calling 911 for odd things, calling at 4am to lifeline to ask the time or to ask to call us. She would leave the stove on; take pills in triplicate and some days not at all. Eventually she had to go to a nursing home. My mother in law had saved a lot of money and had many investments.

My grandfather had Alzheimer’s. He was doing things that would make your hair stand straight up. He also had a farm with lots of land.

The family on both issues had to do what was the best for the person and placed them into a nursing home. My mother in laws money was totally ate up. My grandfather’s farm was sold and the money all went to the nursing home as well. It is unfortunate but a person's well-being has to be looked at first.

No one wants to put a loved one in a nursing home. But hearing your side of things it sounds like everyone is suffering trying to deal with the disease.

It is also very hard to explain this to people when money is involved. They only look at the money side of things instead of what is the best route for the person.

One thing that I would highly recommend is to attend a meeting on dealing with Alzheimer’s. I did. I learned so much on the illness and how to deal it with head on and personally. There are things you will understand better. If you contact your local aging and disability center they can direct you to a meeting. If others in your family wont go with you I still highly recommend you go yourself. After I attended the meeting I saw things so clearly and felt much better about the future. You will be at a better place mentally if you go.



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Old 12-02-2012, 11:59 PM   #8
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Hi all, it's been a while since I posted. As you can imagine it isn't easy living with a parent with Alzheimer's. To make matters worse my mom fell off the dining room chair on November 4th and fractured her hip. She's doing great. Has had surgery and has been in rehab and will hopefully be home in a couple of more weeks. Now I'm dealing with him first hand and it isn't easy which brings me to the present.
Tonight he grabbed his car keys and left. No word or mention just out the door. Two hours passed and he still wasn't home. He can't drive well during the day, night time is impossible. I thought maybe he went to see my mother in rehab but when I called her that wasn't it and now she was worried. After another half an hour she begged me to call the police so I did. An hour later there was a knock at the door and there was dad and an officer. The cop asked to talk to him and that's when his license was surrendered. Right now he is not a happy camper. He's been yelling alot but has since calmed down. I have his license and the keys and he won't be getting them back. Let's see what the morning will bring.
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Old 12-04-2012, 11:16 AM   #9
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I am very sorry you are going through this. Unfortunately, it will not get better, only worse. I suggest you prepare for the time when he will need to go to a nursing home. Speak to an elder care attorney and start looking at homes. It will reach a point where you cannot care for him at home, perhaps it has already reached that point . Some people continue to try, and then accidents happen. My FIL fell, hit his head, and died. Other people have set the house on fire. Some people get violent It is a terrible, terrible disease and all you can do is keep him and you safe. He's not going to get better, no matter what medicine he's on. Medicines can slow the disease, make person more stable for a while, but nothing has been discovered yet that reverses or stops it. It is a fatal disease. And when he is in a home you will be able to visit everyday if you choose to see that he is being well cared for. He will be more comfortable because life will be more stable and predictable.

I wish I could give you uplifting news. All I can do is offer a >hug<.
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Old 12-04-2012, 11:43 AM   #10
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I am very sorry you are going through this. Unfortunately, it will not get better, only worse. I suggest you prepare for the time when he will need to go to a nursing home. Speak to an elder care attorney and start looking at homes. It will reach a point where you cannot care for him at home, perhaps it has already reached that point . Some people continue to try, and then accidents happen. My FIL fell, hit his head, and died. Other people have set the house on fire. Some people get violent It is a terrible, terrible disease and all you can do is keep him and you safe. He's not going to get better, no matter what medicine he's on. Medicines can slow the disease, make person more stable for a while, but nothing has been discovered yet that reverses or stops it. It is a fatal disease. And when he is in a home you will be able to visit everyday if you choose to see that he is being well cared for. He will be more comfortable because life will be more stable and predictable.

I wish I could give you uplifting news. All I can do is offer a >hug<.
Thanks for the hug. Yes it is worse. It went from "I'm just hurt that they took my license away. I'll have to get over it." to...."You took my license away. You could have stoppped it. Your not my daughter anymore. You're dead to me!" I know it's his illness though he was always a mean man when I was growing up. I left home when I was 17...no college...straight to work. We were estranged for 10 years. I only came back because my younger brother was dying and my mom needed my help. Two open heart surgeries saved him for awhile until too many blood transfusions and the onset of Aids ended his 29 years in '87. I met my future husband the year before while home and my brothers death seemed to soften my dad but today I don't know that man. Even after being brought home by the police he still wandered off yesterday and was brought home by the police again. I went out to move his car yesterday and saw that the tires were flat. Well they did't get that way by themself. Now he's ranting because he says he has a buyer for the car and believes that he can sell it and keep the money regardless that the bank still owns the title for the loan. I can't convince him otherwise and I'm tired of trying.
My mom is in rehab due to a fractured hip 3 1/2 weeks ago. He was mad at her because she insisted that I get the police involved so I called 911. He yelled at her that he didn't love her and never did. Again just words but my parents have had a rough history regardless of their nearly 60 year marriage. Honestly, I don't know how she ever put up with the guy. She even left him for about 2 years but came back when he begged her to. These words stung but she still said, "It's ok...I love you anyway." Now the story is completely twisted, how she broke his heart. He doesn't even remember what he said to her...oh..but he remembers what he said to me. Oh well, I'll keep you posted.
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Old 12-05-2012, 10:16 AM   #11
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Remember, you cannot reason with an AZL patient. Their brain is broken. You can spend all day trying to explain it to him an you will just have wasted your day. You need support from the AZL Association and others. There is assistance out there. Since your doctor is not being very helpful, you need to find it on your own.

I'm not there, and I'm not a geriatric professional (although my daughter is) but from what I'm hearing, you cannot take care of him yourself. He's too sick. He wanders off, he is non-compliant with meds, he's combative. You wouldn't try to take care of someone with cancer home alone. You need help.

What area of the country are you in?
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Old 12-05-2012, 01:45 PM   #12
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Remember, you cannot reason with an AZL patient. Their brain is broken. You can spend all day trying to explain it to him an you will just have wasted your day. You need support from the AZL Association and others. There is assistance out there. Since your doctor is not being very helpful, you need to find it on your own.

I'm not there, and I'm not a geriatric professional (although my daughter is) but from what I'm hearing, you cannot take care of him yourself. He's too sick. He wanders off, he is non-compliant with meds, he's combative. You wouldn't try to take care of someone with cancer home alone. You need help.

What area of the country are you in?
I live in Massachusetts...things have gotten so much worse. He was fine last night...talked to my mom on the phone and said how much he missed her and loved her. This morning he screamed at her...said he hated her and me and wished us both dead. He took th eplates off his car and hide them and took the battery out of our land line phone...but I can still use speaker phone. My daughter says she fears for my life....should I be worried???What can I do? My mom called his doctor and he will call me later today. But he has gone down hill so fast. I'm beginning to feel a little scared. I woke up and stared at the ceiling this morning with tears in my eyes. I got up, made a pot of coffee and then went to my bedroom and cried my eyes out. I don't know why...stress I guess. Luckily my DH works nights and was there for me. I'm lost at this point.
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Old 12-06-2012, 12:51 AM   #13
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Yes, that is what happens with ALZ. They have moments of lucidity, which lulls you info a false sense that things are getting better. Those moments will come less frequently as the disease progresses.

I wish I could tell you things will get better. They won't. This is why no one person can do it on their own.
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Old 12-06-2012, 01:31 AM   #14
Caseheidi
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My MIL also has ALZHEIMER'S, and we ended up placing her in a care facility. She just became too much for us to handle, and it just progressed so fast. It is sounding to me like your family may need to consider this option.
A teacher at the ALZHEIMER'S Society put it best for us when he related this illness to a dance. The "Dance of Dementia" he called it. The patient is the only one who knows the steps, and we as loved ones and care givers can only try to keep up. Remember, by placing a loved one in a care facility, you are just keeping up with the dance steps.
Does your Mom have Power of Attorney? If not, you need to take steps to get it. With all you have shared, your Dad is not able to make decisions now and is a danger to himself and others. I would really encourage you to tour some facilities and check out this option.
Also look into Medicade. There are many rules and protections in place so that your Mom can still have her home if your father needs Medicade to pay for his care. Mostly you need to prepare for this eventually.
Mostly now, you need to take you time, and couple time. Being a care giver is exhausting, demanding work. Look into place who offer assistance. Someone to stay with Dad whole you get a break. You are not alone. Sounds like most of us are either there with you or have been in the past. Turn to your support network as much as you need to.
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Old 12-06-2012, 08:43 AM   #15
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Shadow, I sent you a PM.
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