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Post Info TOPIC: My mom has alzheimer's disease......


~*Service Worker*~

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My mom has alzheimer's disease......


and after about 2 years of taking care of her my family is showing signs of falling apart.

It is 5 of us...4 girls and 1 boy. Mom has always lived with my brother. He is a non-drinking A that has not had a drink in many years. He thinks he is the dictator of all that goes on with regard to taking care of our mother. We each have our comittments of caretaking and payments for her caretaking during the day. She is at the point where she cannot be left alone and has been that way for almost 2 years. Some give more time and less money and vice versa. So far it has worked. We are more than lucky that all 5 of us live close enough to help in caretaking.

Lately, I think the stress is getting to us all. One sister left her husband and now cannot afford to pay her share and really does not want to give much of her time as she lives further away than most of us. She really didn't give much time before she left but now the ones that are paying money have to make up her share....which is me and one other sister. OK....I have been dealing with that up until now. My one sister and I have recently ask my sister to do one night. How it stands now is 1 sister takes her to her house for Mon and Tues night (she pays no money because she saves money by not paying an outside caretaker for 2 days) , 1 sister stays overnight on Wed night and I stay overnight on Thurs night. We alternate Sunday nights which we do 1 every 4 weeks. My brother has her on the weekends unless he has something to do and then the sister that doesn't give any time during the week picks up that time.

I guess I didn't need to throw all that in but I am starting to feel so much resentment for 2 of my sisters and my brother. I am afraid that when the time comes for my mother to leave this earth we will not be an intact family. When we made our comittments to taking care of our mother we keep them. If we are unable to do our night we switch with someone. It is between us girls to take care of getting the job done. My 1 sister that does the 2 nights at her house says she cannot do it Thanksgiving week because she has some cleaning jobs she needs to do. I can understand that she cannot take my mother to her house for the 2 days but there is no reason that she cannot do the nights.....except she doesn't want to. When she realized me and my other sister would not be doing our night that week because my brother has those 2 nights off, she quickly thought that that would be a time for her to say she couldn't do it and that me and my sister did not have to do our night that week so we could fill in for her nights.

I am so angry and so resentful to this sister that I could just spit nails. She cannot stand the fact that me and my sister do not have to do our night and she has to do her 2 nights. Keep in mind she pays nothing and is not on the Sunday rotations. She will not work it out...she will go to the "dictator" and cry to him and he will get on our cases for not doing whatever she wants.

I don't know how to get past this resentment. I DO NOT want to give in to her. She picked those days because she does not want to spend the night at my mothers house and sleep on the sofa 1 night a week.

I need help.....I DO NOT WANT TO LET GO OF THIS RESENTMENT!!!!!! If I do it just means she has minipulated everyone again and I will be doing something that I just don't think is fair.



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Gail


~*Service Worker*~

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Dear Gailey
 
I do hear you. Caring for an aging parent is not easy. It does appears that your family has worked out an impressive schedule to accommodate the situation.
 
 
After 2 years it looks like the circumstances of some family members has changed and it might be a good idea to try to renegotiate the arrangements instead of having the "Family Dictator" rule.05Maybe hiring a home care worker occasionally would be a partial solution
 
Please remember that in alanon we try to live in the solution so that we have less stress, anxiety and distress.. Resentments only hurt the person how keeps them inside. Glad that you shared how you are feeling here and hope that you can find a way to let it go and hold on to your serenity.
 
 
The Serenity Prayer repeated over and over has helped me find my center and see new solutions to a problem that once confused me.
 
 
Praying for you peace.


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Betty

THE HIGHEST FORM OF WISDOM IS KINDNESS

Talmud


~*Service Worker*~

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Posts: 1235
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What if you remembered your resentment is separating you from Higher power?

I am touched by your post, Gail, you mention your "commitment" to your mother before she leaves this earth - I would keep focus on that, that's beautiful. Your care for her, and your LOVE for her has nothing to do with anyone else. That is where your power is. All of this is between you and your mother. or perhaps you and your Higher power, that's it. When I remember I'm on a spiritual journey in al-anon, I get my clarity back.

Stay pure in your motives and purpose. Do what you can and remember there is but One authority and it ain't your brother, haha! Leave them both to their Higher power, do not become enmeshed in their journey to higher power, because that's when things get real messy in my life, when I wander off my side of the street, passing judgement, trying to control, raising my expectations, etc. etc. It's best when I just keep my side of the street clean.



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The prayer isn't for Higher Power to change our lives, but rather to change us.



~*Service Worker*~

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Gailey,

I have recently taken over the caretaking of my elderly Mother, she is 87 and has dementia and cannot take care of herself as far as meds, Insulin, cooking for herself, she can dress herself, she cannot shower herself, It has been challenging , she is up and down and somedays verbally abusive to me and very resentful toward me. She is narcissistic and doesnt like women.
Other than that.... My brother took care of her last year and couldnt do it anymore. So I volunteered to move into a two bedroom with her. My mom is fortunate enough to have a good income. So thats not a problem, we do have a caretaker that comes in on Sunday for 4 hours to give me some relief. Taking her to the Drs. is on me also. My brother will take her for a few days if I need it.

Here's the thing, we have another brother who is not involved at all. Other than coming for family gatherings once in awhile, or if my Mother has spent a few days in the hospital, he will show up like a visitor. This is the way I look at it, taking care of your elderly parents is a thankless job and when they have dementia/alzheimers we are not the professionals. Anything we do is beyond and over the boundaries of caring for people, even if they are your parents. Its too much. I dont take my brothers inventory. Whatever he chooses is his choice. There should be no guilt thrown on him. I happened to be divorced from my husband and I volunteered for this. If it gets worse then we will deal from there.

Your resentment is quite normal, but not something you can live with until your Mom passes. Think of alternative idea's so you can relieve yourself of some of the pressure, its because you feel that your sister isnt carrying her part.

This is where the compassion comes in , your sister just cant do it, she is not made out of the same stuff as you. That doesnt make her any less.

Its calls for detatchment with compassion in all matters.

What your doing is hard , I know but dont forget YOU.

Hugs, Bettina


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Bettina


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My mother had dementia for quite some time before she died all in all it was a good long 5 years of increasingly confused and sometmes belligerant behavior.  My two sisters did in fact coordinate and carry out much of her care throughout that entire period. At one time one of my sisters was the sole authority and did it all. Eventually my other sister became more involved but this was never acknowledged or even considered as something noteworthy by anyone other than me.  Naturally there was a tremendous tension between them at times because both of our family structure as well as my mother was stubborn, mean and incredilby nasty till the end of her days. .  At the same time, between the two of them they did indeed come up with an impressive way to care for her which did indeed at some point involve others which my mother eventually came to accept and even enjoy.  I don't doubt for one minute that both of my sisters felt that I was lazy, irresponsible and thankless because I was not involved on so many levels because of the physical distance involved, but mentally I was right there in the thick of the resentment, anger and fear that spewed over every conversation we had.  And I still kept looking for some nugget of maternal feelings that could somehow hold me together even then and I kept hoping that now for once my elder sister would give up her bullying but of course she didn't.    I certainly can understand where your entire family is coming from and how exhausting it is to live with that level of frustration and exhaustion.    Needless to say the resentment and anger and fear all kept up through my mother's death and into the resolution of her estate.  I was over reactive, angry and at times completely obsessed with feelings about my sisters, my mother and whatever the details were of her funeral even right down to the words on her tombstone one year after she was buried.   Needless so say the now ex A was completely furious that I was paying attention to any thing other than his issues.  Indeed he was quite upset when the news suddenly came of my mothers sudden death after all wasn't his constant crisis supposed to take precedence over everything else.   Talk about living in an emotional desert but then that setting is oh so familiar to me, I can survive on so so little .   I knew no one who was willing to admit that they lived, slept and breathed in such a seemingly toxic environment of grief, rage and overwhelming hurt. For the most part most of the people I knew  whose parents had died, coped by completely shutting down around their parents dying or tried to fashion something that everyone else would find acceptable rather than dare feel what was going on.   Indeed, one of my then "friends" publicly chided me for not getting over it in her alloted two weeks of mourning.    Most of all I felt absolutely alone and swamped with feelings that I was ashamed of, rage, grief and helplessness and an absolute conviction that now for once my elder sister would not bully me into doing whatever she wanted.     My reaction to her bullying was of course an over reaction and made it very very difficult to take care of myself when I was already completely emotionally exhausted but I was determined not to be bullied anymore. 

My mother was always frankly very severely mentally  ill and nothing but nothing changed that no matter what anyone did around her.  She did indeed, lie, manipulate and divide anyone around her until the end of her days and she never lost her penchant for controlling everything and everyone even when it appeared her mind was completely slipping away.  Of course we can believe that something can allieviate the burden of doing everything that is already" unbearable" because all those issues of childhood come up and can't simply be separated out into nice neat parcels and shelved away under serenity.  Sometimes it seems like the choice is shut down or be manipulated but sometimes there are other options like walk through it and feel what is coming up rather than run for the hills.  I am glad I was able to stay the course even though I know it seemed much like an over reaction at times.   Feeling all that fear, grief and anger helped me to be able to accept a reality that I never really wanted to acknowledge and certainly to begin to see the now ex A for what he was, an addict who wasn't remotely interested in recovery.  

For me now I think the task of caring for my mother as she aged was so much like the task of bearing her as a young mother who absolutely couldn't cope on any level.   Needless to say now my mother had been dead for a number of years my two sisters would like to continue the fighting, vicious gossip and compulsive resentment and bittered skewed  jealousy that began when we were toddlers. My elder sister can command everyone do her bidding but I am no longer jumping whenever she demands whatever it is she deems essential.   I still don't much want to accept my two sisters as they are but there are many days when I can and those are the better ones and indeed I don't get bullied, threatened or manipulated in quite the same ways anymore by anyone....     The picture my two sisters have of my mother is still the one we had as children someone we so desperately wanted her to be rather than who she really was.  Their sentimentality, denial and downright rewriting of our common family history used to absolutely destroy, even decimate my serenity and I absolutely could not reconcile it for much of the past few decades.  Nowadays I can let them, my two sisters,  have whatever picture they want because I don't need them to fashion and shape my life anymore but I did need them and crave their understanding most of my life.  I didn't get that option (which I considered so so essential)  but I got to understand where I came from and how I learned to operate and much of that was first hand trying to deal with them as our mother slipped away.  I think we die as we live and my mother died a traumaticly consuming death much the same as she lived taking all kinds of casualties along the way.  This time I wasn't one of them.    I have had  to make a new family for myself  and sometimes that new family was exactly like the one I grew up in and I once again had to leave them while understand why they are so so familiar to me.    And sometimes my family of choice can look respectful, loving and healthy and I hope I can bring more of that into my life but first I had to be wherever I was at the time rather than what I would much rather be. 

I hope you will find a time to give yourself some breaks from the resentment, anger and fear that your family is submerged in. Take time to go to meetings, read recovery books, seek love rather than hate and know the difference between them and find some solace for yourself.    The fact you are in al anon and aware of what you are doing and what your choices are is incredible and requires a diligence not many people have.  I hope you are able to reach out for support, care and understanding through such a very very difficult time



-- Edited by orchidlover on Thursday 25th of October 2012 03:36:35 PM



-- Edited by orchidlover on Thursday 25th of October 2012 04:20:00 PM

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orchid lover


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Thanks Gailey for such a helpful thread! I am also taking care of my mother who has moderate Alzheimer's and is going to be 90 on December 17th. I have been caring for her in my home for 7 years. The journey you are on sounds so familiar, the anger, resentment and bitterness I can all relate to. Unlike you, however, I am an only child and do not have the sibling rivelry. This is a double edged sword. While I don't have to bicker with siblings over who does what, I do have all the responsiblity, which is overwhelming. My mom is a veteran and gets VA Aid & Attendence, which is how I stay at home with her. Until recently this was working out real well, because she had enough money for me (her fiduciary) to hire caretakers to fill in during the day, so I could do errands. However, the payments stopped some months back and I have been the sole caregiver, along with my 15 year old daughter, for about 5 months now. I am a single mom, also.

I recently asked my church if they could help sit with mom some, so I could at least get out to do groceries and some other errands without having to take her with me. (I have a seperate post about this entitled Step Four - made a searching and fearless moral inventory of ourselves.) This did not go well. I also have lost the support of some friends, and since my mom, as well as myself and my daughter are only children we have NO other family to rely on. The stress has been unbearable. To add to this my daughter's dad is on supervised visitation only with her, so this adds to my stress, because I get no support there either. I also have gotten ourselves into a bit of a bind through a organization that called themselves VA Help Analysis (not associated with the VA... only using the name) putting mom's money in a fixed annuity in order to get her the VA Aid & Attendence. This in effect has stonewalled my ability to do anything other than put her in a VA home, due to the fact that any other nursing home will require the sale of the annuity to admit her (it's considered an asset) and to do so would cause her to lose about $40,000. So, up until just recently I didn't even consider this as an option. Now I think sometimes it might be better to lose $40,000 than my sanity! LOL

In the Spring of 2011, I was admitted to the hospital with depression and exaustion due to all of this stress and sleep deprivation. Thinking that when I was admitted to the hospital the VA would take over and place mom, and my daughter would also be placed in a temporary home (foster); due to my inabiltiy to care for either of them. I was wrong on both accounts. NO ONE DID ANYTHING FOR MY MOM. The police (who assured me that they would take care of my mother before I left to go to the hospital) called the VA and they asked mom (who has been declared incompetent to make decisions for herself) if she wanted to go to a VA home in Northern Missouri (not where we live), of course she said no, and they let her stay ALONE in our home the rest of the day UNSUPERVISED! If it had not been for my daughter (that went with a friend of mine that I had made arrangements with before I left for the hospital) making sure that my mom was checked on, no one would have known she was alone! My 15 year old daughter had to call the caregiver that I was using at the time to come and stay with mom (full-time) also a friend, until I was released from the hospital 5 days later!

Oh the nightmares I could tell you! But here is how I cope today...

#1 - two meetings per day (when possible) in the MIP chat/meeting room

#2 - make a daily gratitude list that includes among other things: my mom is not violent and thanks me for everything that I do for her (I realize many Alz. patients do not.), although my mom has sundowning (hallucinations in the evening and early morning) she has somehow been able to seperate them from reality (she knows that they are hallucintations), I am grateful that I have friends that DO give me help with mom and don't expect to get paid. I am grateful for a daughter that is responsible and wise beyond her years and helps me with mom a lot. Even though the VA Aid & Attendence isn't coming in right now, I know it will be reinstated as soon as the paperwork is filled out and turned in; plus there will be a large sum of retroactive money that she will get for the time she wasn't being paid.

#3 - a list of friends that I can call or text at anytime (we jokingly say we "live" in each other's phones! lol)

#4 - I have lots of pets (this wouldn't work for some people I realize). I call it "pet therapy"! lol My mom responds to it well too. I have two little Pomeranians, a mini Aussie, a Cocketial and a cat! Quite the zoo! Because of these pets I HAVE to get out of bed. I HAVE to feed them. I HAVE to walk them each day. This is important because I literally can't get out of bed some days, because i know mom would just sleep the day away if I'd let her (literally) and so would I! So this benefits both of us.

#5 - I love to write and used to have a by-line in a local paper. I now do a blog about my mom's Alzheimer's on Blog Spot. If you'd like to read it it's called Musings of an Alzhiemer's Caregiver at: http://caregivermusings.blogspot.com/  I try to use humor whenever I can, because I know that other caregivers read my blog and I don't want to discourage them in their journey. For more personal (emotional) blogs I go to Live Journal and post about my journey's, all of them, including the struggle I've had with loving alcoholic's. You may also view these if you wish at: http://cowgirl1980.livejournal.com/9389.html  this link should take you to Deep Ocean/Deep Thoughts and a post entitled "Mama's don't let your Cowboys grow up to be Babies." It's a story of my love for my ex-AH, the rogue Cowboy.

Each day is a One Day at a Time journey. IF I stay in today and tell myself that I can do this "Just for today"  then I can make it. As the poem says, "Just for today, I will try to live through this day only, and not tackle all my problems at once. I can do something for 12 hours that would appall me if I felt that I had to keep it up for a lifetime." Hope some of this helps, everyone had great ideas on how to cope with Alzheimer's! I'm going to add some of what you guys said to my list!

Love in Recovery,

Lisa



-- Edited by Overcome on Saturday 27th of October 2012 01:23:05 AM



-- Edited by Overcome on Saturday 27th of October 2012 01:30:29 AM



-- Edited by Overcome on Saturday 27th of October 2012 01:40:04 AM

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