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lesliecobb Asked February 2011

My mother has Alzheimer's and is mean to my children. What can I do?

I have twin girls who are 7. One is autistic and just said soemthing to my mama and mama said something nasty to her and made her cry. It's ugly. I can onlly see this getitng worst because my girls are twins and oen is autistic and one is not and mama will be confused over them being 2 and not understanding how there are 2 girls who look a like. my girl lwho is autistic was real upset but her sister God Bless Her was abel to comfort her and I am greatfull for her ableity to do that. I do not know if others have autistic children at home and Alzhiemers parents at home but if you do please tel me how you also help your children.

anonymous95109 Mar 2012
Jeannegibbs, As usual I agree with you. You give the best advise and insight. I want to add something. Sometimes families band together because they have a hard time surviving otherwise. An elderly mother who needs care brings income into a household that is struggling. A single parent, with a child who has special needs, may feel like she has no other choice, emotionally or financially, than to take in an aging parent who hurts the children she is trying to sustain. She then finds herself in a worse situation. More needs and more disruption.

I am grateful to see Gueststop's comments because it gives other possibilities. I'm not saying that my comments represent Leslile. Not at all. I just have such a sadness for the human condition. So many folks that are up against the wall and don't know what to do. They do the best they can.

jeannegibbs Mar 2012
I want to comment on the financial aspect of these situations. Many people seem to think that they are financially responsible for their parents care. Not so. You are responsible for your own and your children's wants and needs. For most working folks (let alone folks who can't work because of health issues) that is responsibility enough.

We don't always do well by our most needy citizens, but there really and truly are many programs in place to help. Alzhiemer's and other forms of dementia can require some very specialized handling and care. Sometimes that can work in a family setting, but when it cannot, there are alternatives. It is not a choice between bankrupting the sons and daughters so they can't support their own families or turning the elderly out on the street.

So many post here and say "I cannot afford long term care for my parent." But you do not have to afford it. If the parent has funds, they need to use the funds for their care. If they don't have enough (as most people who've worked for a living don't, if they live a long life), there is Medicaid or other programs that can take over.

I don't know about other countries, but every US state has resources for its citizens in need. Guestshopadmin has very kindly demonstrated that information is available on state websites.

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anonymous95109 Mar 2012
Guestshop: You are an angel for sure. I'm so grateful that you are there to help Leslie. God Bless you. Maybe you can give hugsplease some insight into who she should contact in her state.

I have a dear friend who has been dealing with a grandson with autism. They are connected in the state of Washington. The family is amazing and a great support to each other. So sad when that isn't the case.

Thanks so much for being that unique person who can reach out to those who have such a specialized need.

hugsplease Mar 2012
I dont want to sound like poor me but in my age group all my friends parents are just dealing with this !I have no money and unable to work due to me fighting cancer at first my mom moved it to help with bills and ya help me ~with my amazing kids one who has autism will now its way turned and im at loss this is so new to become my moms who was my mom? is now screaming at me kids are scared and im just have no one to realtate to this I have an amazing husband who is really helping me with out him I could not do this ~How can I keep the balance of a mom with no thought empathy ~GONE!? a teen whom I dont want to stress out ~And an amazing kido with autism who feels everything I do ~

hugsplease Mar 2012
Help Im So alone with thank god an amazing husband my mother of 71 has Alzhiemers and is so hard for me due to me fighting cancer plus I have an 11 yr old son who does not grasp the fact is grandma is no longer here but is due to him with Autism....I have a Teen but hate to put so much on her with no money and no one helping she is very mean and rude and all about her not cares and the stress its putting on my life my kids my own stress that should not be im in my early 30s and so lost~we are under the same roof but she does not see that im so stressed cleaning her room feel like im on the moon all alone!

lesliecobb Mar 2011
Oh my Goodness. You are an angel. God Bless you!

Guestshopadmin Mar 2011
Leslie, Sorry for length of post.
You can pull up the South Carolina state agency website as Department of Disabilities and Special Needs. This will help with Autism services if you aren't already getting. http://www.ddsn.sc.gov/consumers/Pages/ApplyingforServices.aspx takes you to page with 800# and how to apply for services. They should be able to help you coordinate services for your daughter and self if you are not getting; and steer you in direction of agencies for aged. Your father post stroke may qualify for their services also.
Here's their mission statement:
Welcome to the South Carolina Department of Disabilities and Special Needs (SCDDSN) Website. We are currently working to enhance our website by making it easier for you to navigate.

SCDDSN is the state agency that plans, develops, oversees and funds services for South Carolinians with severe, lifelong disabilities of mental retardation, autism, traumatic brain injury and spinal cord injury and conditions related to each of these four disabilities. Our mission is to assist people with disabilities and their families in meeting needs, pursuing possibilities and achieving life goals, and to minimize the occurrence and reduce the severity of disabilities through prevention.
This is link for South Carolina Access portal which will connect you to services for both aging and disabled
https://scaccess.communityos.org/cms/
Helping each other stay strong.
Helen

lesliecobb Mar 2011
guestshop GOD BLESS YOU. I am in S.C. Don't know our programs but need to get on the stick. Thank you.

Guestshopadmin Mar 2011
Leslie, my son is a high functioning austistic. Some family members "get it"; some do not. Your primary responsibility at this point is to your children who cannot care for themselves. I know that sounds brutal with dementia, but you are stuck in the middle and will have to make hard choices. If you read my profile, I have had to make some myself and told family members that they will have to be able to work with my need to care for autistic son who comes FIRST. I don't know which state you live in; the department of aging and disability services in texas has programs not only for respite care but also for certain support services and social workers that are trained in working with disabled. With autism caregiving demands and the ability to extend life with dementia, you will wrestle with the sandwich. Don't exhaust yourself now with the double edged sword; make plans. Send a note to my wall if you want and we can talk more. Hugs to you and YOU ARE NOT ALONE.
Helen

wuvsicecream Mar 2011
The more I read about other care giving situations, the more I realize that my situation so far seems like a party compared to others. I am a hairdresser and see alot of autisic children. I have a set of twin boys one with autism as clients. As a mother to these girls you must enough issues with them, then to add the Alz into the situation you must be a saint. I agree with bobbie I would try to focus on LTC for your Mamma. There are resources out there if there is no funds it is just an application process to deal with and you can do this yourself. Do you have POA and ID and other nessesary info, call local Social Services Office explain your situation and take it from there. You don't need to spend your money on parents care. You just need to prove what they have as income and assets and where it's been spent.

lesliecobb Mar 2011
There 7.
Its been hard but she been ok lately. Not mean. She keeps looking at them if they aren't the room togehther and oen comes in and the other comes in and I now she gets confused. But she been real quietlike lately. When she sees them together she squints and stares like she dosen't get it.
We got no cash for a home for her. Id do it for my girls.

bobbie321 Feb 2011
Oh leslie, that is a awful situation but not one that can't be worked with!
thankfully she has her sister who can comfort her.
How old are your daughters?
Gramma's mean words are very hurtful and a dementia patient is ..... demented. very important that you keep that forefront in your mind. It's easy to forget because she is your mama.
I am going to ask a question and you can tell me to buzz off.....
have you looked into placing your mom?
It is not the worst thing that you can do and we as a nation have grown up with the notion that if you do that you are a terrible person. That is simply not true.
for some dementia patients their bodies outlast their brains for so long and it can have incredible consequences on the health of a family.
Just a thought.
I don't know of any folks here who have Autism and Dementia under one roof, but if you are patient, and if there is one, they will show up.
If not, stay tuned anyway because the folks on this site are truly angels and you will get the feedback and the support you will need to make it through this. And you will make it!
Write back and let us know how you are dealing and together we can come up with a plan!
lovbob

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