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Old 11-21-2011, 07:06 PM   #1
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back Again Please help!

I don't know if I've been back since my Mom was dx with early dementia. It is really hard. Mom has been on Aricept 5mgs. Has anyone found that med to cause more forgetfulness? My Mom seems worst. Unless it's because I'm more aware of things. Now she's getting her bills mixed up, I have not gone over them yet. One of my sisters are going to go over them tomorrow.
I've been the go to person for everything and I'm already sick of it. The thing I'm sick of is when people say "we did to do this, we need to do that" but they don't start anything. Actions speak louder then words.
This may sound dumb,I don't understand how My Mom can write down a time but not know what time to be somewhere. She's been doing that all the time. She also says mean things about one of my sisters, anytime I bring her up she says some thing mean, that she pushy or bossy. My Mom wasn't like that before.
It's so hard, I know most of you reading this may be going through things that are 100xs worst. On some days I really don't know how I'm going do this. Then I think I have no choice but to deal with it. My Mom took care of me(us) my whole life.

 
Old 11-21-2011, 08:50 PM   #2
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Re: back Again Please help!

What you are seeing is demented behavior. It is not going to get better. It is only going to get worse. It is what it is and you are going to have to figure out how to deal with it. Yes, it is frustrating and confusing to see our loved ones act in a way that we don't understand but for them we have to find the emotional and physical strength to deal with it.

My first recommendation to you is to get the book.... "Coping with Alzheimier's, A Caregiver's Emotional Survival Guide" by Rose Oliver and Frances A. Bock. Read it, highlight it, and hear what it says. I will tell you now that you can do this. It is just a matter of learning how to deal with the behavior with the right mind set.

Yes, it is hard but it is not impossible. It is probably not the Aricept but the fact that you are more aware and in tune to her inabilities now. You don't "buy" her excuses and explanations. It is not uncommon for them to get their bills mixed up. They will pay some twice and some not at all. They will also order items, forget they have order them, and them may even refuse to pay for them. Be very aware of those she comes in contact with who might scam money from her. She is very vulnerable right now. Somebody will need to make sure bills are paid correctly and keep tabs on where her money is going. It is wise for somebody to have a durable power of attorney on her and it is a good idea to have a family member's name on her financial accounts. This makes it easy.

As for others not doing what you think they should or promising and not coming through.... That is life my dear. Others have grand ideas and no follow through. Some just give lip service and have no intention of doing anything... they just want to tell you what to do. What you need to realize is that you can not change other people. They are who they are. The only person you can change is yourself and the way you handle what they do or do not do. Somebody has to take the lead. If you are the one that can and will do it then please don't worry about anybody else. You have enough to do without that added stress. If you need something then tell them what you need. If they don't do it then tell somebody else or do it yourself. If you spend time hung up in negative emotions because somebody else didn't do anything it will handicap your ability to accomplish what you need to do.

Your Mom can write down a time but not know what time to be somewhere because time is not relative to her. She writes down numbers that she is told to write down. They mean little or nothing to her. They are just random number. She has lost the ability to correlate those numbers into a time of day she is supposed to do something. She could show up on the right day but the wrong time or the wrong date at the right time. Or she might show up in the middle of the night and wonder why the office is not open. Numbers are not real. It is a spacial concept which leaves them early. That explains the problems with money, bills, and time.

Alzheimer's first affects the area of the brain that controls our social behavior. They lost the rules of being social. They say mean things and do bizarre things that do not fit with our norms. If they are angry or upset you will know it. They also don't do a good job of directing their anger where it should be directed. She is saying bad things to you about your sister but she is probably saying bad things to your sister about you. She just doesn't know any better at this point. Her life has been turned upside down. She can't make sense out of it. She doesn't have the ability so she strikes out randomly. It is demented behavior and is not to be taken personally. No, Mom was not that way before but she is now and it is a result of the disease so you have to deal with it by looking past it.

We don't have a choice. We have to deal with this disease when it takes over the ones we love. It is not impossible, though sometimes we think it might be. You just take it one day at a time, one episode at a time, even one hour at a time if you need to. You learn all that you can about the disease. You learn about the behavior to expect and how others deal with it. You find yourself a support group. A local support group is great. You can find one in your area by checking with your local Alzheimer's Association Chapter. You can always come here You need to have a family meeting. Somebody needs the durable POA and name on the financial accounts. They need to be responsible for paying her bills and making sure money is available for her needs. Somebody needs the medical POA/medical directive and be responsible for her health issues. Somebody needs to make appointments and be sure she gets to them. Somebody needs to be sure her medications are given correctly. Split up the duties. Have a plan in place and it will be easier.

You also have to realize that she can not continue to live alone if she is now. You need a plan in place for what is going to happen. Even if you think it is in the future, having a plan in place is imperative. Look at all the alternatives and find out what is best for her. Then when that moment comes you are not searching frantically and end up making a bad situation worse.

Yes it is all frustrating, confusing, difficult, hard, and nobody wants to do it. But it is also rewarding, possible, and can be done You just need to get ahead of it and not play catch up.

Keep typing your frustrations. This is a great place to vent and find the encouragement and information you need. Hang in there. It doesn't necessarily get easier... it just gets different! Once you are firmly intrenched you figure out that you can do this! I know you can

Love, deb

 
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Old 11-22-2011, 05:04 AM   #3
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Re: back Again Please help!

Deb that's it in a nut shell! There are many of us going through it & it is so hard! Baseball keep coming back & reading, writing- whatever helps. There are some great people here!
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Old 11-22-2011, 06:59 AM   #4
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Re: back Again Please help!

I don't think aricept caused this. It is part of the disease. In early moderate stage, she would begin to forget how to pay the bills.

Same for my FIL in 2004-2007. Now he has severe AD.
Back then, it was difficult. In the beginning, he ordered vitamin himself and some computer CD himself... We had to cancel its membership and took away his debit card... For at least 2 or 3 years, he got his debit card and it was a mess.
He paid the water bill twice and he changed the phone plan twice and I went crazy changing the payment method to online.... It was terrible. I hate him for that!
We took away his debit card and checks eventually.

Eventually you need to take away her debit card/visa cards and her checkbooks. Your sister has to do the financial stuff. She will be mad. Don't do it in front of her. Don't bother to explain to her. Say white lies and tell her it is all online and etc. Set things up online so it is invisible in the mail.

Good luck,
Nina

 
Old 11-22-2011, 07:08 AM   #5
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Re: back Again Please help!

Thank you so much Deb for all of that great info. It in so nice to vent and not be judged for it.
We are having a family meeting on the 4th of Dec. One of my sister's is checking her meds weekly, I started that and asked her to take over. The family really does want to do their part it's just hard to know what part that is right now,we are slowly learning.
Your right about one day at a time, if I think about what's in store I lose it. That's what was happening yesterday. Most of the time I'm thinking how I want to enjoy my Mom while she's still with us and she's still enjoying things. I guess I get caught up in feeling so bad for her because she has always said how scare she is about getting this.
The family and I go back and fourth about telling her. She thinks it's just dementia that comes with age. Lately she has been saying "I don't know what's wrong with me" and she told one of the teen grandkids "I think I have Alzheimer's but my kids don't want to hear it" she said something like that. I think she would be so depressed if we did tell her. Even if she has a feeling it's not the same as knowing for sure.
I'm going to order that book asap.
Thanks again so much I really don't know what I'd do without this website!

 
Old 11-22-2011, 07:22 AM   #6
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Re: back Again Please help!

Thank you Nina, That's a great idea to not have mail coming to the house. Mom has paid bills twice. She just canceled her visa because she thought she had lost it.She found it later and called back and tried to get it back. I have no idea what she is telling me about what they said. My sister will have to call.
Like I said it's sad because my Mom knows things aren't right in her head,then she worries and it seems like she gets that much worst. Do doctors ever give anti depressents to people with Alzheimer's? Thanks again Liz

 
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Old 11-22-2011, 07:27 AM   #7
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Re: back Again Please help!

Baseball, venting is necessary!! If we didn't vent I do believe we would explode or implode because of all the frustration and stress. Voicing our emotions do make the easier to deal with. As for judging... I can't judge. I can only tell you that I have been in your situation, and we are both doing the best that we can do in a bad situation that gives us no instruction manual. To make it more complicated, each person is different. Therefore you have to pick through the information you get and find what works for you. This job is not for the weak!

We used the weekly pill boxes for a while and they did ok as long as we locked up the bulk meds. I did find Dad refilling his box during the week and then taking those he had forgotten I am just glad it happened on a Monday and not a Thursday!! Assigning task does help. Sometimes they don't know what to do and giving them a specific job helps them... and you

Yep, there will be bad days. We are human!! I know I gave up spandex and capes a LONG time ago. From time to time I want to scream, throw something, or just beat my head against a wall. Then I vent, get a good night's sleep, and keep going. It is a roller coaster.

Yep, we had the same questions about telling Mom that your family is going through and the answers were all over the place. Mom made those same statements. She even went to the doctor and had herself diagnosed with depression since the symptoms are similar. Alzheimer's was her personal worst nightmare after caring for her Mom with this disease. She did hear the diagnosis when it was given but quickly forgot what they had said. From that point I didn't make a "big deal" of the diagnosis. There were a couple of times I did try to explain, when she was so very frustrated, but that didn't go well. The advantage I had... Mom didn't remember the conversation and we went right back to saying nothing. I know others, like my Aunt, who embraced the diagnosis, found ways to compensate, and discussed it freely. You just need to know your Mom, see how she reacts, and go with what she gives you. Just remember there are no mistakes... there is just a big broad learning curve until you get it right

You have the right focus... most days!! Enjoy your Mom as much as you can. Expect demented behavior and know you can deal with it. Find the humor. Go with the flow. Just be sure she is safe. Pick your battles and relax as best you can. Mom will pick up on your emotional state and the better you are, the better she will be. Yes, this is hard but it's not impossible and somewhere along the journey will will find joy, laughter, and receive gifts you never expected

Love, deb

 
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Old 11-22-2011, 07:31 AM   #8
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Re: back Again Please help!

Liz... Yes, doctors DO give antidepressants to those with Alzheimer's. Their depression and other psychological problems are real. Mom was actually on an antidepressant before her diagnosis. She was initially misdiagnosed with depression So it may be worth asking the doctor

Love, deb

Last edited by Gabriel; 11-22-2011 at 07:32 AM.

 
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Old 11-22-2011, 07:52 AM   #9
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Re: back Again Please help!

Liz,

Ask the doctor to give her antidepressant. It helps. Well, when my FIL was back home, the GP stopped the antidepressant because he was taking namenda and exelon. He took aricept for a short time but it gave him the side effect loss of appetite. He stopped all the pills for dementia due to side effects in late 2008.
Now in he is in the NH and he is given antidepressant again and he just started taking some low-dose antipsychotic drug because he gets combative for toileting. Ask her GP to see which med is better for her. She is depressed about Alzheimer's. I am amazed that she said you guys deny that she has Alzheimer's! My FIL never admitted he has AD although he admits that his brain has something wrong about his memory. He admits he has memory loss but he refuses to acknowledge that he has this fatal disease.

Take care,
Nina

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Old 11-22-2011, 08:55 AM   #10
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Re: back Again Please help!

Here's something else to read--an article that I've found helpful. Search for "understanding the dementia experience"

It's a pdf file on www.alzheimercambridge.on.ca

Free to print out and very insightful

Hang in there--we're rooting for you!

~Kren

 
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Old 11-22-2011, 01:27 PM   #11
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Re: back Again Please help!

Hello I understand your frustration very well! I am taking care of my aunt with dementia for the last three yrs but she is failing now and I have had to call hospice in for her. As far as family everyone expects one person to do everything. Just take a deep breath and get ready for the ride its not a pretty ride either!

Love and Hugs for you.

Gail

 
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Old 11-24-2011, 10:24 AM   #12
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Re: back Again Please help!

my mom has alz, and for the last three years has lived at thier home with my dad with help from family and hired help. as her alz progressed we were accused of stealing her jewelry, hiding her bank books, taking her cookies and so much more, my mom even called the police on my sil for stealing her cookie receipe.... once you accept what is going on you have to find the humor in it or it will drive you crazy. one minute sweet as pie the next angry and scared. there are so many things happening to your mom that both you and her need to sort out. as for telling her, do what you think is best, if it is going to scare her more why bother, my moms brother passed away and we did not tell her, what would be the sense, she would just morn his passing each and everyday as if it had just happened each and everytime she remember it. easyer on everyone if memories are kept alive and everyone has happy thoughts. It got to the point where I told my bothers and sisters that when you are talking to mom that if you can not say anything uplifting don't say anything, your mom needs no more to worry about than what is has on her plate, make sure nobody brings her anything more to worry about, even telling my mom that our car was not working right would set her to fretting. oh ya did I say hello..... sending big hugs to you for you are about to start down that long road of fustration and anger. It does not need to be a lonely road as there are some wonderful people here that will reach out and help.

 
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Old 11-24-2011, 12:50 PM   #13
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Re: back Again Please help!

Thank you, It's hard to read these things. I want to know these things well I don't want to I have to. I did order the book, I can't remember who told me about the book right now or the name of the book. It's funny when I don't remember things or do something dumb I think I may have Alzheimer's but I get it out of my head because I don't want to think the way my Mom did for years and years. I wish I knew how long things were going to take. Like how fast or slow it's going to go.
I went with my MOm to the bladder doc and my Mom needs the bladder control meds she was on (they took her off because of forgetfulness)but I don't know if she should be back on them or not. I know her forgetfulness wasn't because of the meds. I don't want things worse. It's a hard call.
Thanks again everyone. Happy Thanksgiving!

 
Old 11-24-2011, 05:03 PM   #14
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Re: back Again Please help!

Baseball, none of us want to know anything about this disease but because we have no choice we have to know all there is to know! Knowledge is power! So I do understand what you were saying. Since I gotta be here might as well be as educated as possible huh?

I told you about the book and it is excellent. It will help you cope with what appears to be the impossible by how we talk to ourselves and how we think. We can defeat ourselves before we start if we let ourselves do that. I keep the book "Don't Sweat the Small Stuff, and It's All Small Stuff" close at hand. I have learned many techniques for controlling my stress level by controlling my thought process. We are what we thing!!

I find every medical decision a difficult decision. Do you or do you not? Each has it's pluses and minuses to be considered. Which is the best way to go... it's a gamble either way. There is no way to know for sure what causes what and what helps what. Throw on top of the a medical community that wants to treat a dementia patient as if they are a 30 year old. All we can do is learn all we can about the medical suggestions the doctor's make and then make the best decision we know how to make. If we decide later a different direction is better than we take it. We do the best we can, in the moment, with the knowledge we have at the time... if we know more later, with more and better information, then we may do differently. There is just no reason to beat up on yourself for any decision made. There are no instruction with this disease and there is no right and wrong. Just us humans making the best decisions we can make for those we love.

Question, what is the bladder medication and what is it for?

Love, deb

 
Old 11-24-2011, 07:14 PM   #15
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Re: back Again Please help!

The medication is vesicare (something like that)

 
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