Alzheimer's is the cruelest thing ever...having a hard time

MonicaM43February 11, 2013

My mom was diagnosed with Alzheimer's in early 2012. Looking back I started seeing signs of it as early as 2010 when she suffered from breast cancer. Until recently she was able to live alone (she is a widow) in her house of 45 years in the country. I lived about 10 min. from her and was able to check on her often. For most of 2012 I have been handling her medicines using a pillbox and she still won't remember to take them without assistance. Just before Thanksgiving of 2012 she had to ask me to help with her finances which she had in complete disarray. I have been handling them ever since. At first she allowed me to sign on her account and have it set up online to keep track of. She can't remember the day of the week, the month or the day and usually the year. About a week before Christmas her mind really took a bad turn. She heard some shooting (she lives in the country where people do target practice) and was afraid to go to her mailbox and that her animals would be shot. No amount of reassuring helped. I found out she was driving around at 3 am more than once looking for her cat who was NOT missing. For some reason my mom kept obsessing about her cat being missing if it was out of her sight for a minute. Then she called us really angry thinking we were trying to sell her land out from under her which we would never have done. Nor did we have the legal right to do it. She was completely delusional and paranoid. She was still driving and would show up at my house being EXTREMELY aggressive. She threatened to burn the neighbor's house down and shoot my husband. I took her to the doctor (Heaven knows how) and they found nothing dehydration....just Alzheimer's. After about a week of intolerable, obsessive behavior she suddenly went back to her relatively normal behavior. Like someone flipped a switch. That lasted for about 2 weeks and it happened again. She would call me incessantly day and night screaming and ranting. We had taken the guns out of the house for fear of everyone's safety. She suddenly realized it and accused us of stealing from her. She screamed and ranted and paced and called and threatened until I was near the edge of a breakdown myself. The last straw was when she went to the Sheriff's office in town and reported us for theft. Fortunately I have connections there and they understood her condition. However, my husband followed her there to see where she was going because i didn't think it was safe for her to drive and she drove all over lost for nearly an hour before she finally found it. They refused to let her drive home and made me come get her. This infuriated her and we had to take her keys. She physically attacked me for it and screamed and ranted and raved until we gave them back and instead disabled her car. We didn't tell her we did it, but she by this time she was in such a state she suspected us of everything. Many many things that we did not do and she made up in her mind. Finally, after a morning of constant calls and delirium, I went to her house and she wouldn't let me touch her. She backed into the far side of the room screaming don't touch me. I finally talked her into the car and went to the ER. MHMR refused to come evaluate her saying she wasn't a threat to anyone. I had a handwritten note from her I had found threatening to kill my husband. The ER doctor wanted to give her a pill and send her home. I had had enough. A nurse friend of mine helped me navigate the sea of medical mumbo jumbo until we found a behavioral health hospital willing to admit her if she signed herself in. At this point I did not have power of attorney because she was so suspicious of everyone. Intermittently she would come to herself and not even know why she was at the ER. She cursed me all the way to the behavioral health hospital and then miraculously became mellow when we got there and signed herself in. They kept her a full week working on her meds to try to stabilize her. I got busy and had her taken from there to an assisted living which has mostly dementia patients and is a secure facility. She has been there 2 weeks...the paranoia is mostly gone and the delusions. Her meds are helping. She thinks she is going home, but that is not an option. She is eating well now after losing lots of weight from forgetting meals. She can't tell you why she is there, or how she got there...she keeps asking me. Unfathomably she can still remember how to call the auto teller at her bank and is obsessed with writing down balances and debits. She did finally sign a full POA financial and medical to me. I just keep putting her off about going home and putting it off on the doctor. He is working on her meds...he is concerned about her memory. I don't know how to tell her she isn't going home or if I should. She just turned 75 today. She still calls me a lot and I feel like I am going to get an ulcer over it or something. I feel the guilt that everyone talks about and that isn't really rational, but there it is. I guess I just needed to talk.

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Just some suggestions. Find a Dr. specializing in Alzheimer's. DO NOT take her home, but find a home that specializes in this and get a lawyer and make sure all the legal stuff is in order. YOU do NOT have anything to be guilty about. Contact the Alzheimer Assoc. It is my understanding they have people to help you. A person from the assoc spoke to our Senior Citizen's group and told us that. Do you have a Council on Aging? They will help also, just ask. Document everything you do, who you talk to, when, phone # and what they say. You said the ER refused to help, contact the hospital and find out why they did what they did. We have some excellent places here in ND and do have medical people that have been trained to help, so what your ER did is wrong and needs to be re-trained NOW. Be firm and ask for help. It is avaiable.
Good luck, and yes I do have friends that have this disease and I have seen what meds can do.

    Bookmark   February 12, 2013 at 6:59PM
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My husband has Alzheimers/dementia and so did one of my grandmothers so I can relate. Based on this you will feel guilty no matter what you do. But always try to do what is best.

Never sign your name agreeing to pay for anything without adding her name and POA. Some places will try to make you sign with only your name. One stated to me that adding the name and that you are POA was not necessary.

Just tell her that she can not go home until she is better. This puts it on her rather than you or the doctor. When she tells you she is ready try telling her that she needs to give herself more time.

As bad as it seems do a DNR. She may even want one.

As far as the guilt keep telling yourself that you are doing what you would like to have done for you. Some times just allowing yourself to cry helps. It does not mean that you are weak but is a stress reliever. Try to stay healthy yourself.

I would ask if test were done to make certain the cancer has not returned and has moved to the brain.

Both of you will find peace

    Bookmark   February 12, 2013 at 7:06PM
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Thanks for the kind advice. I do have a lawyer and phave my legal ducks in a row. She was going to her hematologist every 3 months and so far no more cancer. At her last visit they said she could wait 6 mos. So she is due to go back in May. Fortunately, she has a fair amount of income coming in. She had a bad day yesterday and a lot of confusion. I hope today is better.

    Bookmark   February 13, 2013 at 8:20AM
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My husband had AZ and we were so lucky he always knew and trusted me. He did not know he was not at home when after 4 years I had to put him in a care home. He was a fighter, he did not understand why someone was undressing him and messing with him, so he was in 3 different homes before he died.

If your mother goes to a care home be sure she goes straight from the hospital, Medicare will pay for her care for 2 or 3 months. Make sure she is not in restraints when the care home comes to evaluate her, they may not accept her if she is. You might also check for a document that bans keeping her alive with meds. I have been told it is called different things in different states. Here in Kansas it is called a comfort care order. Her doctor will have to sign it. Also I am not sure I would go with her when she is transferred. She may be aware enough to behave with strangers but not with you.

    Bookmark   February 13, 2013 at 5:29PM
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I could have written that, nearly word for word. Many of us know exactly what you are going through. I am so sorry. It will get better for both of us, and our mothers soon.

Emma - I was unaware that Medicare will cover the first couple of months. Please tell me more. My mother went into assisted living this Monday. I have already paid the $3000. Can I expect to be re-embursed?

    Bookmark   February 15, 2013 at 4:44PM
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Sorry I didn't read your post well enough. They do not pay for assisted living as far as I know.

I put my husband in a care home because my health was going down hill with the stress of it all. The care home came out evaluated and accepted him. Five days later the took him to the hospital to see if they could find meds to calm him down so he wouldn't fight them. That is how they get of rid of residents after they have accepted them. The would not accept him back and the next home my husband went to medicare paid it for 3 months I think. It's been awhile. I moved him out of that home to one closer to home and medicare paid for a month I believe. It is something you should check into with medicare. This was common knowledge with the staff.

When he was in the hospital they put him in restraints and no home would accept him. I asked a nurse what would happen if we couldn't find a home. He said he stays here.

This post was edited by EmmaR on Fri, Feb 15, 13 at 20:58

    Bookmark   February 15, 2013 at 8:11PM
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Emma - I am very sorry as it seems your DH suffered a great deal mentally and emotionally. And you as well, I'm sure.

I hope this doesn't seem insensitive, but wouldn't it be better to give heavy meds rather than to restrain someone? How awful to be restrained where you could not even scratch your nose. Yeah, it's easy to question decisions when from postings, but it's just so very sad.

I hate this disease and what I have seen it do.

Should I ever suffer from AZ, I hope I am one of those patients that sits quietly in the corner, and doesn't know what's going on. That sounds easier than always struggling with frustration because you can't remember where you are and why you're there.

My mother is not a burden on me, but I feel like if my kids had to deal with this it would definitely be a burden on them. I never want to be a burden or disrupt their lives.

    Bookmark   February 17, 2013 at 10:54PM
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Thank you for your kind words. My husband wasn't aware of where he was, he didn't remember home, but he remembered that we loved each other. HIs eyes would tear up when he saw me. One time he asked, "what is this place". I told him it's like a hospital but it is not. It's a place that can do things for you that I can't. He was fine with that. Up until he went to the care home, I could leave him to run errands but I didn't dare stay gone after three. He had sun downers. He didn't know much of any thing after that time. About the restraints, it is probably against the law to use drugs to restrain them. He was in the hospital the week before he died and only lived a couple of days after he went back to the care home. I am not saying anymore about his death except if I am ever in the same shape I want the doctor he had in the hospital.

    Bookmark   February 18, 2013 at 3:26PM
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If they come straight from a hospital to a nursing home and they have been evaluated and have been qualified as needing skilled care, then Medicare will pay the first twenty something days and pay a portion of up to 100 days.
However, this is not true if the patient goes into an assisted living instead. At least this is my understanding and what was explained to me. If they are a war time veteran or the surviving spouse of one they might qualify for a benefit called Aid and Attendance that will pay towards an assisted living or nursing home...or inhome care for that matter.
Thanks for the listening ears and kind, caring hearts. The Lord will not forsake me in this or any of you, but instead give us strength to carry on each day.

    Bookmark   February 18, 2013 at 11:35PM
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Hi All,
I have been reading your posts through my tears. Got a call last night from my Aunt's senior living apartments, she tried to wander off and became belligerent, and took a couple of swings at an aide who tried to stop her. Lately her dementia has gotten so much worse, but we've been hoping we could keep her there at least until Spring. They sent her to the hospital who sent her home after doing the very minimum testing. But today her primary care physician found she had pneumonia, dehydration and protein in her urine. I know that both dehydration and UTI's can cause the behavior we have been seeing. So we are headed there,(we live in a different city) to see what must be done next. We have been told she most likely will not be able to return to her current facility.
I'm happy to have found this forum, as I have a feeling I am going to be needing some moral support. We went through all of this once with my husbands parents, but without any real serious dementia. I think this is going to be even worse. And my own parents are also very elderly and in no condition to deal with this. Both my brothers live out of state, so I am the one that has to step up. Wish me luck. I am praying for all of you.

    Bookmark   February 28, 2013 at 2:36PM
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Tripletmom (triplets, really? Wow! You have my admiration!), you can access all sorts of local help if you just ask the right questions. There is the discharge person at the hospital, don't wait to the last minute to make this person your friend and ally. Seek him/her out ASAP. There should be a way to contact the local Ombudsman office, who should have resources on local nursing homes and assisted living group homes. Contact the Alzheimers Association both in your own town and where your aunt lives. They often have support groups and other resources. Your local (or Aunt's local) Area Agency on Aging should have all the contacts needed to give you a good start. The AAA is usually a part of the county/regional government and have a Information and Assistance line.

If you need more specific help, let me know your location and I'll help you find it.

You're facing a big job, and I wish you strength. Come here to let off steam anytime!

    Bookmark   February 28, 2013 at 8:21PM
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Thanks Sushipup.
Yes, my triplets turned thirty last week. They are the joy of my life along with my two grandchildren, and we're soon to have number three and four.
I am familiar with some of the organizations you mentioned, because of all we went through with my in-laws. She has been referred for short term rehab and will then be placed in long term memory care.Right now we are waiting to see if we will get one of our top choices of nursing facilities. If not, I will try to get her transferred out to my county where there are many more options. Meanwhile we have already started packing up her apartment. This is my Dad's sister, and I can see the toll these last couple of years has had on him, as she has declined. Several years ago she made me her health care proxy and POA, but because of the distance my Dad has taken care of most of her day to day needs. We did manage to move her to a place only 3 blocks from his house. But, unfortunately she only lasted a year and a half. I knew if she started wandering they wouldn't keep her there.She needs a higher, more secure level of care. I am really hoping that this move will ease my father's burden.

    Bookmark   March 3, 2013 at 9:42PM
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MonicaM43, (and anyone else dealing with this horrible disease)
All of the above posts offer very good advice.
I would like to add the suggestion that you check out the Alzheimer's Association's website if you haven't discovered it yet. (
They have a number of forums for caregivers.
You will find a lot of people there who are going through
the same things you are.
The people there are very understanding and helpful.
You will also find a lot of very helpful information,
Books to read about the disease and tips for caring
For a dementia patient, etc.
It helps so much to know you really are not alone in this!
The feelings and emotions you are having
are normal reactions to the situation.
They may not be 'logical',
But they are very real!
It is also important to remember to

I recently lost my husband to this disease,
I understand totally how you are feeling.
There are many of us out here who care a lot
about what you are going through.
Please feel free to share here anytime you need to talk!


    Bookmark   March 8, 2013 at 12:43PM
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We had to put my dad into an Alzheimer's assisted living facility in Jan. He is depressed, but he was depressed at home too. The antidepressants haven't helped so far. The He had stopped bathing regularly, changing his clothes, or doing any housekeeping when he was still at home. We were able to take care of cleaning the house, but couldn't always convince him to bathe or change clothes, even when he'd had an accident. We were about to start the process of applying for guardianship when he fell and had to go into the hospital. That triggered the events that led to him being placed in a facility.
I feel some guilt in that I'd like for him to be home, but I know that he can't. He also has a pretty serious mobility issue with his foot and requires assistance getting out of a chair, off the bed, etc. Even if I didn't work full-time, I live 1.5 hours away and couldn't physically manage him. I hope your situation is getting better.

    Bookmark   March 28, 2013 at 6:52AM
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I want to say one more thing about AZ. The AZ organization has always believed aluminum to be the cause of the disease. They have grudgingly admitted it may not be. There was a studyof AZ patient's brains and they found far to much aluminum in it. The retracted that statement a week later and said the aluminum was a side effect of the AZ. If you believe a human brain can manufacture aluminum under any circumstances, I have a bridge I would like to sell you. The lobbyist for the alum cook ware probably got them to change the report because of the alum cookware they had in their warehouses. After that all of the alum cookware was coated. I still believe it is the culprit and I researched AZ when my husband was diagnosed and found a document written by one of the top immunologist in this country saying he thought it was alum and said it was rampant in this country and one day there would AZ patients in the streets because there would not be enough homes for them. Aluminum enhances meds and it is in almost every shot you get, it's in 95%of all anti acids meds, etc.. If you need antibiotics you need anything that will help, but do we need flu and pneumonia shots to prevent something we may never get. A lot of people died in the 1920s mainly because they did not know how or have what they needed to fight it. We do now. Growing up and until I was middle aged I had never heard of the disease. I remember hearing one mention of "old timers" disease, now everytime you mention it to someone, I hear things like both my grandparents have it.

    Bookmark   March 28, 2013 at 5:14PM
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Thank you for all the kind replies. Sorry I have been MIA lately. My mom has now been in the Assisted Living facility for about 2.5 mos. She has gained 15 lbs. This is great, because she had lost so much weight. She is participating in a lot of the activities and is doing SO MUCH BETTER. The only thing is she still gets on these kicks about wanting to go home. She'll tell me over and over there isn't anything wrong with her, she's going home, she is going to walk out of the facility (she can't)....even with me refusing to argue with her and trying to talk calmly to her she can work herself into quite an uproar. Sometimes all I can do is say, I love you, Mom. I'll see you tomorrow. And just go. It breaks my heart. I want so much for her to be able to go home...for things to just go back to how they were before we were robbed of so much time. A friend of mine described it very well. He said Alz. not only robs our loved ones of their memories. It robs us of ours. My husband is a good help to me and does his best to run interference for a lot of the phone calls I get from her. I just wish that she realized how much better she really is doing now. She has no memory of all the horrible things before she came to the assisted living, and I don't want her to remember.

    Bookmark   April 15, 2013 at 10:39PM
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I was given some advice when my husband had AZ that helped me. Don't argue with an AZ patient, redirect the conversation if you can, change the subject. I was told it was alright to lie to them to keep them from getting so upset. Usually they don't remember that you told them "we are working on it". You will never make her understand that she is not alright.

    Bookmark   April 15, 2013 at 11:22PM
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Oh the road we have traveled since last I posted on this forum. My mom stayed in the assisted living facility until last Nov. when she fell and fractured her foot in 3 places. After a hospital stay, she went to a nursing home to do 100 day of therapy. After that was done she went back to the assisted living facilty at a higher care level. As this disease has progressed she no longer remembers that she had another home and so the incessant pleas to go home have stopped. Although a relief, it is also unbearably sad at times. She can no longer remember how to use a telephone and so the calls had also stopped. We have had more problems with uti's and dehydration, overhydration throwing her electrolytes out of whack and she has developed the Alzheimer's gait, making walking more difficult. After a recent hospital stay I made the decision to bring her home to live with me. She is no longer aggressive or combative, so that has made it easier. I love a lot of the people who work at the assisted living, but the management is horrible and they have been through 3 directors in 2 years. I couldn't seem to keep her well there or cared for sufficiently and couldn't quite afford the nursing home. She still knows me, but doesn't always know other relatives that she doesn't see as often. I can' t seem to interest her in any activities. The only time she gets very lively is when my grandbaby comes to visit. This really litghts her up. It is a joy to see. I will do this for my mama, and I know it will be worthwhile.

    Bookmark   May 29, 2014 at 12:30PM
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Bless you.

We (I) resisted putting my grandmother in a care facility until/if an incident happened that gave no other choice. The fates were kind, and she died at home as she wanted. She was terribly confused for the last few months, insisting that the home of 65+ years was not her home and that she had to pack and go "home" which was a different house on the other side of town. She "knew" me via the multiple daily visits but had lost that I was her grandson, believing instead that I was her brother. On one occasion I told her that I'm her grandson and she broke into the biggest smile as if that possibility had never occurred to her. It was a grace and mercy that she died before she became completely incapacitated.

    Bookmark   May 31, 2014 at 5:01PM
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My husband was his mothers care giver no one lived in her state but a cousin of his and though she tried her best to assist his mom it just was not working out. Since his brothers didn't want that job he took over as the eldest son, moved his mom to our state and took over her care. Now it was not easy as we had to handle the other family members too. Had moved her too far from home, others wanted to see the will, No one came to see her until it was the end. they would call her or send a card or note always infrequently always asking the same questions, how are you really doing and are THEY taking good care of you. Meaning us. Yes we were taking good care of their mom, grandmom and aunt, sister. Where were they when she wanted to see them. We saw her every day as did our son and grand children who got to know the great grandmother. The staff where we had her really were kind to her and we know that she was not always kind to them. We would take her for rides when she wanted to go out and the doctors visits too. She had dementia and Alzheimer's at the end. No one understood what he did for his mom. One brother did thank him for all he did for their mom. She was their mom and they all should have helped take on her responsibility. This is a horrible disease. You see your family member go from being a functioning individual to someone you do not know. Thanks to all the staff for the care that she got.

    Bookmark   June 3, 2014 at 9:56AM
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"I still believe it is the culprit and I researched AZ when my husband was diagnosed and found a document written by one of the top immunologist in this country saying he thought it was alum and said it was rampant in this country and one day there would AZ patients in the streets because there would not be enough homes for them. Aluminum enhances meds and it is in almost every shot you get, it's in 95%of all anti acids meds, etc."

I agree. I also think we are getting too many toxic chemicals from vaccines.

Emma, do you have the link to the document by the immunologist? I'd like to read it.

Here are some more thoughts on this subject.

"Studies confirm fluoride enhances 'bioavailability' of aluminum

What apparently happens when individuals with aluminum-induced neural degeneration are exposed to fluoride is that the fluoride enhances the toxicity of aluminum. In terms of bioavailability, or the ability of aluminum to cause harm, fluoride greatly increases the overall toxic burden of this pervasive metal, rendering it exceptionally more toxic.

"[A]luminum-induced neural degeneration in rats is greatly enhanced when the animals were fed low doses of fluoride," reads the news release for a 1998 study published in the peer-reviewed medical journal Brain Research. "The presence of fluoride enhanced the bio-availability of aluminum (Al) causing more aluminum to cross the blood-brain barrier and become deposited in the brain. The aluminum level in the brains of the fluoride-treated group was double that of the controls."

Links that might be useful.

    Bookmark   July 6, 2014 at 12:55PM
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If the aluminum/fluoride connect worked for all cases of Alzheimer's and other dementia's the areas where both exist in the soil where it would seep into the water would have higher than normal cases. Both are mined materials and overlap in certain areas. The aluminum that most think of as aluminum is a processed material from the ore.

Husband has Alzheimer's and I have stopped worrying about the cause since currently it is more of a catch all term for any mental problem in adults. Some are generic some are not but probably start before we are born. Only an autopsy will show if a person had Alzheimer's and most are not willing to pay to have it done. You have to pay to have the autopsy done because it is considered a natural death, lucky people died of other things before end stage Alzheimer's.

The studies that are listed are ones that seem to have a "solution" to the problem and are in my mind suspect.

    Bookmark   July 6, 2014 at 9:27PM
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It's a damn shame. Last year I tried to buy a new aluminum tea kettle - nope. Don't make em. Dangerous! Gotta use stainless steel!
Thermal conductivity of SS is way less than Al. Takes longer to heat up the water. Costs more. Blah.

    Bookmark   July 7, 2014 at 9:38AM
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