Wife with Dementia/Alzheimer's and hard seeing her slip away

My Mary is 73 we have been together now for nearly 10 years and she has become my best friend and my right arm! A few months ago due to loss of memory and often becoming confused over many things. Her Primary care doctor sent us to a Neurologist who did many tests both physical and mental. She told us she had dementia and prescribed Aricept. We were told it was caused from so many years of her taking anti-depressants for her past and all the negatives she had been through! I finally got them pined down into tell us that her condition was not going to get any better that the medication she is on would only slow down the disease! We just started her on another new one to go with the Aricept called Namenda. For most of her life she has been on all kinds of pain killers along with anti-depressants! Currently she is taking over 12 different meds daily with 3 others on an as need be basis. She also is diabetic and has fibermyolgy and other Rheumatoid Arthritis.

Added into that is also another mood altering med to help control a personality change in her that start a couple of weeks ago. We find she becomes so angry over the pain and memory loss that she can become so angry over things we can't control. I know I find some moments I want to hide but there is no place for me to go. I can't leave her alone for fear of what she may or may not do, due to forgetting her meds if I hide them she becomes angry over that. So I just keep a close eye on her continually!

I note her memory comes and goes like an ocean wave and with that comes and goes confusion over the realities of the day or the moment. She takes moments of feeling pretty up beat then in the next breath she slips into complete mental and physical loss! When she realizes her loss memory issues on her up times she becomes more depressed which now becomes often translated into anger of which I take the blunt of.

Due to memory loss I have to watch her closely because of all the meds she is on over the past we have spent hours on the phone or at our local ER because when Over Dosed on one prescription or the other.

I find sometimes her repetitiveness in discussions over something just talked about will cause me to ask sure honey don't you remember? I found that is a big mistake to ask don't you remember. Or sometimes to remind her of things can cause great anger no matter how tack fully you ask.
Are these experiences familiar to any of you and can you advise me from your experiences as to ways to keep her as content and happy as I can? And also what can I do to keep my mind from becoming depressed over what I am dealing with.
I am with her 24 hours a day 7 days a week. I am all she has and she is all I have! I love her very much and will do what ever I can to make her life as pleasant as I can. HELP!

If my words become entangled or repetitive forgive me its late at night and I have been cutting and pasting things into some kind of order! Sorry but from what I have written I'm sure someone will get the idea!
What Else can I do to help her?
Rabbin

Thank You Howlyncat,

For you comments I felt assured that I was not alone in coping with this disease.  I put my faith in our Heavenly Father that He will guide me in right directions to the right people to help me do a better job of trying to help my Mary! 

I am not unfamiliar with the assistance things in our area but I do live in Texas in the United States and in a community that just cut its resources to local Alzheimer's Assoc. and from that they were forced to close their local offices in our area!  I have talked to them and was aware of the 36 hour day book which I will be getting shortly. 

Understand Mary was put on Social Security and comes from a very poor family so her income level is well below poverty levels here in the US.  I am according to the American Diabetes Assoc. one of the longest coping with Brittle Diabetics Alive in the US.  and some of the side affects of that disease has put both physical and financial strain on my abilities as well!   Mary has 9 children and most of them are so wrapped up in their own life's they have no idea what is going on even when I attempt to tell them and ask them to go with us to the doctor to hear it from the professionals they rarely have time other than for two of them who are thank God very helpful!  

So with all of your permissions I will now add you as a resource to help me keep my  mind and heart on the right path to be the best that I can for her!  I also find that my Bible is my greatest resource in seeking understanding of others and how all things including Mary's problems are related to to factors of how we think, feel, and do the things we do!  As it is written, "God is Love and Love is God" your kind words and advise that comes from your heart and experiences come from such love and in that I send back my grateful and humble thanks.  Along with the hope that all of us can extend ourselves as you have to me again thank you!  I really needed someone to talk to that truly understands a disease I am just now learning about from our doctors and from what literature I can find. 

Please note if my posts seem a bit tarnished due to my health problems I just had eye surgery so my vision is a bit raw at the moment so typo errors are always with me but currently they are horrid!

God Bless,

Rabbin

Thanks for replying
I too struggle with this on a daily basis first mom and now my step dad
It is so hard to see what is being done to them we now take the reversal of roles but I still treat my father with utmost respect and dignity .........
I have brothers and a sister that have not once done anything unless there was a pay off in it for them and that is so wrong and so sad but as Snowy points out it happens all over the world our Seniors are tossed away and in many cases treated as rubbish to the curb
this rips my stomache apart
We have no clue some: reports and statistics on how many are caring for their loved ones now .....
China has the Idealology of Keeping and Revering their Elders ....
We need to instill this in our Children in our generation to come think about it we are all getting older and it may happen to me to who knows
I too hold my Spirituality very close to my heart and I never walk alone ..........
Many times I need to talk to Him and I do:sometimes not liking the answer......
Did you get a chance to read Pardraigs thread I think you will find some solace and total understanding there he is 75 and looks after his wife in home all alone
His Book is also his pride he has written about his life and the caring of Jean .......His LOVE
I believe you will find some fantastic support and Ideas in his story
I have adopted them both as my grandparents
The support and family we share here is very crucial to us all in our times of need and I knoww there are days I need it more than others as you no doubt do
Snowy and Inert are here as well I know they will also help you anyway they can ........
I am honored that you have chosen to let us into your life and try to be a great support system and online buddy network to help you thru ...Healing Well is the best I have found and are the people....I sounds as though you have a grasp on info to help you with much of this but alwsay know we are here for you
Post often
May Your God Go With You
Lyn

That is so sad isnt it Rabbin the peeps of today are so different
I was not brought up like that I am 52 and my hubby had diabetes as well .I have crohns and other illneses which I cope with daily but it was a no brainer when time came to look after parents regardless.......
They never threw me away nor let me go with out anything how could I do that to them
I am sure glad you are a part of our "lil family" here Gentle Huggs and always Remember "Footprints "
Be well and God Bless
Lyn

That is truly my hope as well
How are you doing today Rabbin
As you can see I am always up before the sun to start my day tis a long but fulfilling one at the end of each I know I have done my best to be the best I can be and to help my fellow man making it so easy to have a clear concious .
I hope and pray today will be a good one for you and Mary
God Bless.

I took Mary Friday morning on a trip to visit some of her Family in Floresville Texas. They had a festival in the town it is a place known for growing peanuts. A place where she spent her childhood and full of rich memories for her! We spent a couple of days with her sisters and brothers whom are still alive and for the most part it was good trip for her! Other than her family was surprised at how quickly she forgets things and how angry she gets over little things which is not like her! But other than for her moments of anger it was nice trip and we got home safely on Sunday afternoon! So other than being tired I am OK today and my diabetic condition is holding up as an RN my Hemo C run between 5 and 6 and other than running to low I sometimes I do pretty good! I hope you liked my mail and the words I sent gave you a good feeling about life and the hope in life that is always there for those of us who care for others and know that yes, "I am my brothers keeper!" It sound to me as though you are a thoughtful and loving person may God protect and keep you and your family.

God Bless,
Rabbin

So Sorry to hear your not feeling well Please take care of yourself as you have advised me to do.  I inturn tell you the same! 

God Bless,

David aka rabbin

Hy Lyn.

Today was not a good day for me or her,  Her son came over yesterday who is a police officer and said that he was going to take her to see her down to San Antonio to spend a couple of nights with a couple of her daughters.   As a means to separate us and give us each a break from each other.  I thought that was maybe good idea but Mary said I really don't feel good and I don't want to go.  To alter her moods they just started her on trying a product called Depakote to maybe help control the anger she gets!  And it as I understand it is a very harsh drug.  And other antidepressants she takes must be cut back and even cut her down to one dose of two aspirin a day.  I tried to explain this to him and he said OK pack up all her prescriptions and I will pick her up Thurs and meet her daughter down the road a ways to-wards San Antonio!   She just said I don't want to go!   He said well your going and I don't care what you say.  and left saying he be back tomorrow which is today to see how your doing.  

Mary got up this morning and said I don't want to leave my home or lose my home here with you!  I told not to worry its only for a couple of days enjoy yourself with the kids!  Today was the last day for her to get her flu shots so I took her to the doctors and she wanted to get a new pair of shoes so I also took her to local store for that as well!   On the way she said David I don't like being told they have made plans for me without asking what I want and I really don't want to go down there now I just don't feel good!  I told her well tell him you don't and she said right now I'm so mad because they are forcing me to go when I don't want to go and they didn't even ask me what I wanted..  I told her just tell them and maybe later you may feel like and it then go!  So you can call him and tell him and call your daughter and tell her so she won't feel bad!

By the time we got home her son the cop showed up and she told him she didn't want to go and he said I don't care what you want your going.  she please I don't want to go!   He than raised his voice harshly and said I will be here in the morning to pick up.  I said to him wait why don't when just wait and see how she feeling about it later.  He said to me you keep the Hell out of it your nobody.  I said I am somebody I have taken care of her and she has taken care of me for nearly 10 years and I think by law we may of not be by a ceremony but were common law.  He said to hell with your common law adjectives I can't use.   Mary is tears and said you don't come into our home and talk like this and I want you to leave.  He said I will go when I get ready she my MOM and he came across the room at me.  I said that's it we don't act that way here so I called the local PD to get him calmed down and out of here!  I took over three hours her daughter showed up He had called them and told them I threw him out which I did!   And she ended up going to San Antonio with them.

From this leaving out a lot but you can tell I have my hands full!  And my diabetic condition as you can imagine has been a mess today!  I will watch sugars close that they don't fall too far and cause me to have insulin shock.  I am alone but I feel with God's help I can keep it under control!  I am very brittle to begin with and sugars are hard to keep in control but OK for the moment.

Thanks for being there to listen and if you have time say a prayer for my Mary and for me too!  I feel so strongly that our only hope in tomorrow and in the moment is in our love and faith for our God by what ever name he has been given he is the same God.  and to me His son is Jesus Christ.   So if you have a moment talk to Him for me and For MY Sweet Mary that she sleeps well tonight and peace will return!

God Bless,

David aka rabbin

So far no word from Mary today.

She was suppose to of come home this morning but instead I got a call from one of her daughters telling me not today she'd bring her tomorrow!

We discussed the situation with what the son had done in more detail and as we talked I could tell she was not going to be very supportive.  I feel they now think it is my fault she is so down and depressed and have hung it all on me!  It was bad enough when My Sweet Mary would get angry saying I was controlling her when I would try and keep her from doing harm to herself by taking her meds to frequently!   But when mature adults believe their mom who is afflicted with this horrible illness is right and I am contorling her to me this goes beyond logic!  When I call down where she is suppose to be they won't answer their phones.  Last I heard she was going to call me tonight but so far I have heard nothing!   I believe they are working at trying to figure out how to convincer to stay down there.   She is and has been my right side now for nearly 10 years and I knew this was what they were up to when she left!   And now I am pretty well convienced of it and there is nothing I can do!  But sit alone and wallow in my own tears!  

By not talking to me is what hurts the most not knowing what they are up to has me an anxious wreck and my diabetes is at the moment a mess!  Early this AM I went into insulin shock right now its pretty high just too 5 units of Novalog trying to get it down will check it again in an hour!  Oh didn't tell you I also had a stint put in me about 3 years ago so far the bP looks pretty good.  I take antenol and captopr heart and for bp.  But I will do ok!  But this is not helping me either!

I spoke to my sister in Iowa today on the phone she told me to just stay calm and always remember you did the best you could for Mary.  And we have been given a good life together before all this.  I don't know how to explain or show them I do not control her but the sickness and the meds do!   I have had a chance to read the book on 36 hours yet because I'm still going on my own 48!   And I have noted that her children now have become experts on the condition and have been telling me all the things where I have not treated Mary right.   Fine time to tell me this, they never came around before!  They refer to me as a know it all because I tried to tell them she gets confused over facts because her memory comes and goes and she just forgets.  They tell me to not to say anything to her about losing it but how do you keep from doing that when she begs for a pain pill that I just gave her and that she should wait 6 hours between getting the next one!  They just don't understand those things and I am worried she may get too much meds or get into some Aspirn or something eles with Depkote that she should't get.  Why is there a limitation for those taking that med combined with such things as Asprin? 

Any how keep the prayer going for her and maybe just a notation for me! 

thanks   Forgive all the typo errors tonight

David aka rabbin

Thank You Lyn,

Your words encourage me to know that in this world I am not completely alone.  I know that God is watching and My Lord is always by my side and Mary's!

As far as legal help I am in the Heart of Hill country in Texas and there is no legal aid in this area for the poorer of the community nor will any attorney's here listen to any of this maybe only politely! 

Her son that caused all the problems in part of this communities GOOD O' BOY's  He has been with the local Police Dept. for many years and is a ranking member of their gold shield (detective) group!  I have no control on any of this nor can obtain it!  I can only worry about her well being.  I will talk to her doctor Monday if I can reach her!   There is no Alzheimer's local office here because the local county would not fund it well enough to keep it here.  The community is a retirement area and there are many elderly folks here whom have dementia and Alzheimer's problems.

But that is a reality of the area so legally I am trapped on this issue. 

I did inform them that I would no longer cater to their demands in my (our) home that if they could come and go and see her anytime they wanted that I would never come between her and them after all she is their mother and I felt they should be willing enough to show such respect for both her as their mother and for me as the one who has taken good care of her for all these years!  

The common law issue on Texas is a three prong law of proof of or as.  For her she gets some state help for her health Medicare and Medicaid and if we declare marriage rights she will lose her Medicaid because what I earn is then combined with hers which throws everything out that she has gotten and will continually get!  As well as take away some smaller breaks that I get on my health care!  It is as it is in the US today no matter how the election turns out here in Texas this will not change.  This is an Ultra Conservative State that equitable rules for all people do not apply!  There are one set of rules for the wealthy and one set for the working and lower economically class of peoples!   I am not in that upper position and my health as well as my resources are very limited keeping me from hiring an attorney that may want to deal with such a case and here one to do against this establishment is very limited.  Her sons best friends wife was the country treasure here! 

I am not afraid of them for that reality my life is drawing to-wards a close too so so therefore taking what I don't have doesn't bother me  and one day when its my time I will be with our Lord and I feel hopeful He will look well at me and I know He knows I have done the best I could with every thing He has put before me including Mary's children who have no concept of such thinking.

The world's ways are made up of the things of this world and for me I know such will rust and fall apart I will hold on to my knowledge that His World is made  up only of a righteous spirit that I can hope that we all will be worthy  enough to accept!

So keep up the prayers all needed and wanted above all things and cry not for Mary and I but cry for them who have lost their hearts of comprehending are blinded by their own lights!  I pray for them daily even though I ma so angry at them for what they have done out of arrogance and synonymous with that is just plan ignorance for that I am very sad for them!  As it is written God is Love and Love is God and to be one with God means I copy such love not for self but for those who do us the most harm!

Again thank you and cry not be glad for me that as one person in my ending years I know the truths of the errors of my own ways and accept that God is in control and from these errors of my own and from His control I am a better person who accepts the Holy Spirit of my Lord!   IN that smile over what you have read of me and My sweet Mary for she is not mine she like you is His too as are her children!

Plus I thank God for the words from somebody so far away who has given me over the past fews day so much encouragement to endure during these rough times!

God Bless,  

David aka rabbin

David .......I read your posts and I cannot help but cry with you and for you and mary
This is so wrong I have to believe God Has a plan .........he always does
Try Azinfo.org I believe they may be able to give you some input
The doctor has to be able to help with this as well she can make a legitamate statement on your behalf of your loving care for Mary your medication issues and that she was well looked after and love immensely at home with you
I do not believe she is happy and I too am sorried about her well being
Cops do stick together and that to is wrong IMO
Please kno I am constantly thinking of you and Mary and have both of you 's in my heart and Prayers'I am going to contact a lawyer friend of mine that delas with American /canadian Law in Widsor and Detroit and tell him some of this to see if there are any loopholes that can be taken to get her home where I KNOW she wants and needs to be I hope you wont mind if I try all I can do is try rigth
PLEASE look after you this is going to put you in hospital and you know that as well as I do nad I believe our mary does as well
I will get back to you asap
Take care and be well please my friend ....God Bless
you are not alone in this nor are you crying silent and lonely tears I too am with you as He is
Lyn

Hi David, I have read all your posts to-date. What Mary's children have done appears unbeliveable. If they care for their Mom, I hope they know what they are doing, though I doubt it. A lot will depend at what stage of AD she's at. I know that when I placed my wife in a Nursing Home some five years ago she went down hill quickly, she gave up, stopped eating etc. I now know had I not removed her and took her home to care for her myself she would not be alive to-day. If her children are going to care for her they'd better be ready for her loss of speech, loss of special awareness (when falls are likly to happen) and of course double incontinence. It would be about seven years ago my wife's sisters took her for a holiday with them. With my blessing of course, they live 100's of miles away. A few days later they brought her back saying something came up which 'messed' up their plans. I understood and although they have not seen her for about two years I know they love her, maybe they can't handle the pain. 'Like to remember her the way she was.' All things happen for a reason, you may yet be left to pick up the pieces. As you love your Mary all you can do is hope and pray that her children are in their way making her life well. Sorry I can't be of much help, don't know US law, but the law of love, and love hurts the most of all. May your God go with you. Padraig

Charlie thank you so much I am so glad you and David connected I was so praying this would happen
I knew you could talk to him from the same place he is at with looking after His wife and
Now all this I am so hurt for him as well and I too cannot believe how they did this to them both .You are an Angel I told you that long ago and it is so true
How is G Jean today ......I have not been home took Cait out for a treat with us so we had "Family" time and then went and got my infusion as well at hospital
I have those sores back with a vengance and because the picc line was having issues it had to come out my Doc managed to find a vein but I have to go to hospital for infusions of meds
Anyways how are you feeling and how is the weather there?? It is turning quite cold way to early here shows what has been done to Mother nature ...........I believe we are in for a very hard cold winter here .
Keep care of you please and gentle hugggs to G Jean for me ....Butterfly kisses as always
God Bless
Love Lyn