Something has got to change

About a month ago we dropped "Namenda" from my wife's list of meds. I'm not sure if the recent changes in behavior is related or if it is the progression of the horrible disease. But there has been a notable change in aggression and emotional out bursts... the last two nights she has gotten up at 3-4 am and ranted and raved till noon... nothing seemed to distract or sooth . She "hates everyone" and thinks no one cares about her.
I can't go on like this.. I am physically exhausted and emotionally depleted, chest pains shortly after it all started this morning and still have to work 5 days a week. I've notified the kids that I've got to do something... but have no idea how to pay for it. She doesn't qualify for SS, Disability etc. I've got to contact the Dr. tomorrow to see if we need to begin the Namenda again or what needs to happen.
The thought of placing her in a "lock-down unit" hurts me more than I can express... but I may have to endure that in order to secure some rest for both of us.

Edited November 18, 2012 at 7:16 am

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cd52...please tell me you went to the hospital with chest pain this morning. And if you didn't, you need to go. Chest pain is nothing to mess around with!

I really feel for you and your wife. Maybe adding Namenda back in to her medications will help. Also, there may be something else the doctor can add. What does she do during the day when you are at work? Senior Services is a resource you can turn to in looking at your options with your wife.

Good luck. Keep us posted.

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She goes to an adult daycare while I work but Im not sure how much longer
They will be able to keep her.. They have been calling more often saying she
Is upset and they cant do anything with her. I hate the thought of having to do
Anything as far as placement especially this close to the Holidays.

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hi cd52 - you mention lockdown- do not think as this as some final onslaught because if things get too out of control you could consider this option for a limited time only while you get yourself together- i am sure no one would ever consider you doing this if you didn,t have to plus as it could be used for a very limited time span- you must also consider yourself with these pains in the chest because if you go- what happens to her then ? so do try and find the time to get it checked ok- remember nothing bad ever lasts forever- know that we are all with you and you are not alone- only us that have been through this understand- you will do just what you have to so stop beating yourself up- this life is only a small part of the picture so take heart- the powers that be will surely give you the courage thats needed- the spirit (soul) transpires all time and space and the love we have for one another will endure for an eternity and cannot ever die- this ugly disease only masks the real person we know- but remember that the one we love is still there even if sometimes it seems they,re different- sometimes to watch the change in a loved one is totally heart breaking but like i say this is only a mask created by this ugly disease- so take heart nothing or no one is ever lost and love transcends all - so see the doc and be well- harry

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cd52, how long ago did you try for SS disability? I think I read somewhere that those who have been diagnosed with AD do now qualify for that. And I do think that taking her off of the two meds may be having a negative affect. I tried to take my husband off of Namenda, and he became fretful and vey anxious. His daycare called and told us he was roaming around, bothering caretakers and generally not being his usual good natured self. We added the Namenda back and he calmed down again. He is also on Aricept--5mg during the day and 10mg at night. Along with those, he is also taking an anti depressant--Citalopram in the AM, and 200 mgs of Trazodone at night. I know it's a lot of meds, but he seems content most of the time, and he sleeps through the night, except for getting up to go to the bathroom. But back to the SS disability, I really do think you should try again to get it. Part of the "so-called Alzheimer's National Plan" or whatever it is called, was the opportunity to receive the SS disability without so much hassle, I think. However, it might be that you make too much money for her to get it. I'm not sure about that. I sure hope not. Please remember how important it is that you take care of yourself as well, so if you need to place her so that you can continue to work, there's not much you can do about it. Just try to find the best place for her that you can afford and don't worry about what people think. If you are doing the best for both of you, that is the important thing. Praying for you.

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While lots of abuse can and has occured, in the Alzheimers world drugs CAN be your best friend.
They cannot control their actions, if a med can make them manageable it is the BEST thing for all concerned.
The problem is finding the right combination THAT WORKS FOR THEM. Each person has their own reaction to each medicaiton.
Sometimes this takes a hospitalization to figure it all out.

Is placement needed for other reasons? Maybe YES!
The stress you are describing is of the type that can kill you before they meet the end of their life, and that helps no one!!!

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Are you, or is she, a veteran? If so you might check on any benefits there. Also, please, please go get checked for your chest pain...may just be muscular contractions from stress or something more serious. I had a heart attack back in August, at the age of 58. My wife is also 58 and has early onset Altz. Go see your doctor. Mine has been very compassionate and has made suggestions as to caring for my wife. TAKE CARE OF YOURSELF SO YOU CAN TAKE CARE OF HER. You are not alone. You are in my prayers.

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Thanks for all the prayers and encouragement. I contacted her Dr today and he agreed dropping the Namenda may be causing the latest problems.... and may have been doing more good than we thought. Got her started back on it tonight. I don't know how long it takes to get in the system but hopefully we'll see some improvement soon.
I did see my Cardiologist today... EKG was normal... and the chest pains have greatly diminished throughout the day. I didn't mention in my earlier post I have been having some depression and the Dr said he wasn't surprised giving the present situation.
Neither of us are vets... and she doesn't qualify for SS disability because she was a loving "stay-at-home" housewife and mother for the majority of her life so didn't pay in enough to qualify... even tho we filed joint returns for 40yr.
I guess we'll just keep on keeping on for a while and maybe something will change soon!
Thanks again everyone

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It is never a good idea to take the A.D. patient off of any meds without doctor advice. The bad thing about eliminating the Namenda is, that even when it is resumed, it doesn't ever quite "catch up" in helping the patient. You need to consult her physician. It was my experience that Namenda helped to ameliorate behavior problems with my husband. My husband took an antidepressant which was helpful. My heart goes out to you. Taking care of person with A.D. is, without a doubt, a painful and anger producing task.

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Just to be clear.. the Dr WAS "in on the decision" to discontinue the Namenda. The Nurse at Daycare today said the wife had had a better day today.. best day in several weeks.... hopefully the reinstating of the Namenda will cause things to level out.
I've been checking into AZ units this week from $3800- $5000 per mo which is well over what I make each month... When I asked the lady how can I do it like that she said.. "I don't know, its just about all private pay".
I guess I'll check into other options like home help care.
FYI... the chest pains have almost completely stopped...
Thanks

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So glad your chest pain is better. The assisted living facility my wife is in runs $3500+ a month, and like you I can't afford it anymore so I'm bringing her home. Home care here in midlands SC runs about $17 an hour. They cook, clean, give baths, give meds on time. Also a CNA at the facility told me today that she would love to work for us when we get her home as she has grown attached to my wife. So you might put a word out at a nursing home or ALF, or of course run an ad in the newspaper. God bless you and yours.

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WARNING: Be careful about HOW you hire in home help!

If you dont go through an agency you become the employer and are responsible for paying payroll taxes and Social Security and Workman's Comp insurance. If you dont pay these taxes and your employee applies for a refund for taxes that were never withheld you may become the target of an IRS investigation and suffer fines and penalties.

Also your homeowners insurance may not cover your employee if they get injured in your home.

Taxes and insurance CAN be handled on your own BUT you need to do it right so you dont get into trouble.

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Wow I didn't realize the deal on the taxes, insurance and SS etc. There is always another road block!!!. I was concerned about having "just someone off the street" into our home, but had not thought of all the other possible problems. Thx for mentioning it.
Something else to consider. I'm going to check with the tax accountant on the deductions next week and then decide what I've got to do.
Then I've got to go talk to her Dad and Brother next week..... NOT looking forward to that!!!

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I will also suggest a great resource for home care help is a local college or Tech school with a nursing program.. call the Dean or admissions person and see if they can recommend a student nurse..many need money to stay in school or a job and they are very well screened by they leaders and teachers... has worked very well in the past...

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Thx Pontotocgirl..... We do have a Tech school in our town... just not sure if there is a nursing program but I'll check into it next week. So much more to do... but at least there may be some other options. Thanks everyone for the suggestions.

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let me also suggest seroquel... such a great help.. my husband was becoming violent... he had never ever raised his voice.. but he hit me in the head one day and that was it... we needed meds and fast... started him on this and it was a Godsend... also his neurologist told me to use melatonin at night for a better sleep .. and both have worked like charm... my husband could not do aricept or namenda so we use razadyne (sp) I missed a few doses a while back because the script ran out and he started a fast decline... got him back on schedule with it and it helped ... hope this helps.. a spouse on this is horrible.... my prayers and I am always here to listen and give feedback.. and the chest pains... go to the Dr. no matter.. like the others said.. it is nothing to mess with... many have died from "indigestion" or let it go... you cannot be a caregiver when you are not here... hugs...

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Great advice about in home care I did not think about all of that situation, good to plug into this sight once in awhile.My husband is driving me crazy with sitting at the table by the back door and opening and closing the door every 5 min.letting the dog on the porch He will not stop and it is cold, This is a new thing The porch is small but has screen around bottom She cannot escape She is a little Yorkie I love the dog .but I am starting to wonder the stress with him and the dog is getting me upset. I really hate to get rid of the dog but how much can you keep up with?? It is always a new problem every day. When I tell him to stop opening the door he starts his yelling.He can be so nasty and how can you just sit back and be quiet He goes against everything that I try to suggest. It is to no avail. Any help on this ?

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I'm not sure I can be of any help but I sure can relate!!!! Several people have told me that we need a little dog for my wife to hold and love.... I just say... No I don't something else to feed and clean up after!!! I can also relate to the new things each day... but mostly she is mad and upset more often and for longer periods of time.... She is yelling right now as I write.. "We need the police we need the police!!!" Thankfully we live in the country where no one can hear her. LOL!!! She tells me often "you don't care about anyone but yourself, I hate you I hate you". I have to just have to walk out and do something outside or in the garage.
The problem is I told her the other day I would find her a better place to live and she just looked at me and began crying saying, "Please don't take me out of the house.. I would never do that to you!!" Then I start thinking how cold can I be?
I'm still checking on different options... I plan to wait till after the Holidays to do anything {If possible} but at least have a clue what to do at that time. I'm not sure home health would accomplish what I need but it might relieve some pressure for about 1/2 the cost.
OMA123 you are in my thoughts... lets see if we can get thru it all.

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cd52 I am in the same boat...will use home health care first... before I try a AL facility. I just need to be able to get out of the house and now I will have two of them.. my husband and his sister.. but trying everything.. to see what works.. I too just have to get out of the way...and the puppy... I know its hard .. but they really do give them something to concentrate on... I can let our cats out and he has to round them up and get them back in... I just laugh now.. it gives him something to do and concentrate on and he gets so upset.(rounding cats) so the puppy or dog serves to give him purpose .. my drive you crazy about the door and it does me.. running from front to back, calling the cats... but he is doing something... and he makes his brain work.. and keeps him occupied... and the dog will be good company as he gets worse....

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WOW!!! She is so angry and combative today.... She was screaming and yelling while I tried to fill the truck with gas today... I just knew someone was going to hear her and think I was killing her.. LOL!! That's been an hour ago and she is still going strong. I had almost decided today I could continue to care for her at home..... then picked her up at Daycare and they again had her separated from the rest of the participants like so many times recently, because she was so angry. For someone who just a few months ago told everyone they were so beautiful to now say "you were ugly and you're still ugly" in a gruff throaty voice almost "evil" voice, its hard for me to imagine my sweet girl has turn into this. I feel sorry for the girls at the Daycare center who have to listen to it all day, cause I know how it makes me feel to hear it at night..... Yep something has got to change!! But more than once she has told me "Please don't take me out of the house and put me somewhere I can't get back, I would never do that to you". What do I say to that?

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please ask your Dr for seroquel... my husband hit me ... for trying to shut a door.. I went down like a light.. ugh... scary.. they put him on seroquel and at night we have him on melatonin.... it was night and day... really ... or some like ativan... it did not work for us.. but some find it works great.. does for my sister in law when she is "wound up " now if I can find something for me and my temper... I just get so mad at him and its not his fault and I just get madder trying to make him do what he used to be able to do and be able to help me... ugh... what do I do... ? Hugs and Prayers ..

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