Moms of Disabled Adults

I am a Mom of a 28 year old young man, whom i love and adore. but there are days that i need to run and scream...i am his total caregiver and it's my job and my life to give him all he needs, but as he gets older (as i get older also) it gets harder to give him all his needs...he loves the internet and has lots of friends from the Camp he attends...but the internet brings alot of undesirables into my home and it is a constant battle between him and myself...i don't let anyone else know what goes on because everyone thinks he is a beautiful loving, kind and amazing man, and i don't want to take that away from him. But i am at my wits end, I am a very healthy woman that very rearly gets sick and last week they took me to the hospital in an Ambulance, I am better now but my doctor said if i don't start talking to someone , this stress is going to kill me and soon....
well i am a very private woman and i dont like telling anyone anything because i know that words spread like wildfire...so i searched Google and found a few places and this site felt like home...SO here I am, i know that there has to be other moms or dads going through this ...hehe...i could probably go on forever so i am gonna stop here and hope that someone reaches out cause if i dont find a hand to hold soon, i am gonna sink...normally i am very strong and i so hate feeling so lost

Many Blessings

Hi WhisperingWillow, don't sink yet. I understand how it feels when you have so many things inside your mind but have hardships in letting it out because other people love to spread the words and this will make yourself vulnerable. I'm sorry to hear that you are experiencing so much stress but you can try to give yourself sometime first to relax a bit because excessive stress won't help in making it better. You can try to seek for counselors around the community if you don't feel comfortable in sharing your story with people who may spread the words. Counselors can guarantee the confidentiality of the information you provide. Hope this helps. Feel better soon.

dear wisperingwillow, i too take care of my twins who have brain disorders they are wonderful and my husband who has a head injury. yes there is help out there and this is a great site to get support. i would like to stay in touch. i was just looking around on this Easter Saturday for people who look like they needed support and thought i could relate to you because we both have grown sons we care for.write me back if you want. i have hope and faith that because you are reaching out things will get better.

hi whispering,i care for a young man 29 yrs.old with cp. I have cared for him as an attendant for 8yrs now but he has been my nephew for the 28 yrs.i do an average of 15 hours wkly with him and i adore this guy, he lights up my world and i think i can say he adores me too! we get along great and we've both brought out alot of the best in each other.He is pretty low functioning,i feed him,change him,he can't really physically do anything and although he can talk,boy,can he talk! he has a mind of a child,(and sometimes of a wise old sage). I have seen all sides of this guy and i can tell you he has his times when he is not mr.nice guy,or mr fun guy or an angel of any kind,but he is in pain alot . my younger sister is his mother and even with my 15 hours wkly ,it's about all i can do,and to think she has done it for 28 years, he is also a twin, and his brother is healthy,finishedd college,married,ect and she has anotheer son 19 yrs old who has been just as much a drain in other ways,he has had bi-polar and wont work,steals,drinks,lives here and there and has no purpose in life other than his selfish desires,she also has a domineering controlling husband that has not helped her but has in fact put more demands on her such as she must have his dinner hot and ready in a sparkling plate carried to him by her nightly! for almost 30 yrs . they separated awhile but she always takes him back,he has physically abused her,emotionally and every way possible,yet she stays,mostly because of her son with cp,she just can't do it alone.In 2008 the strongest woman i have ever known ,with no warning,tried to kill herself and had a nervous breakdown.She was hospitalized for 2weeks. and is back to the same old life now, I do help 15 hrs wkly which i know is a help to her i can see it, but she is still overwhelmed. My heart breaks for her,it's too much for anyone,I wish I could help more but i have enough for a nervous breakdown myself and i can't.But there are respite care workers and CLTC workers ,community long term care, out there,surely something in your area,someone to take some of the burden off you and let you have some time for yourself, you have to, you HAVE TO! There are good, and special people who really care and would be a great friend for your young man too.I have to give the highest honor and respect to mother's of kids with cp,you will have definately won golden crowns in heaven! please get some sort of respite for yourself and my highest regards to you and your son.

I am the sole caregiver for my 19 year old son. He has autism, ODD, ADHD, encopresis and mental illness. I understand the feeling of wanting to run screaming into the night. I am a single mom so I have no respite. I have been trying to get services for him now that he is an adult. I think I would have an easier time finding the Lochness Monster!
I get so tired. Tired like if I stood up my soul would continue laying in the bed and my body would just stumble a few steps then fall into a heap on the floor which my son would casually step over as if nothing was wrong.
He's left me unconscience on the floor before. Sure is hard. Feels really bad to have never heard my son say I love you. Maybe someday. His autism isn't so bad that he can't speak at all but he doesn't understand social skills or to call 911 if your poor mother is passed out on the floor!
Anyways, we all know it's hard and we all have our own heart breaking stories. I wanted more than sorrow, isolation, and a few scripts being thrown at us.
I took NAMI's Family -to- Family class. It helped me alot to be in a room with other moms of adult children with disabilities. I volunteer with my local mental health board. I read journals, attend conferences, and stay active in my community so I can advocate for my son and others who can't speak for themselves. I have a walk team for Autism Speaks. I have a life outside caregiving and yes it mostly is in a field concerning his issues but I receive support and knowledge that I might never know otherwise.
Ohio has a toll free statewide phone number that any one can call and get a referal to their local support groups, respite care, and mental health services. Other states probably have something similar. NAMI is national so there is probably one near by. Autism Speaks has a great website.
What will my son do after I am dead? There are companies that specialize in trusts, estate planning, etc. Find a guardian for the future or auxiliary care giver now and have that writen into your will.
We care for our selves so we can care for others.

I am the mother of a 46 year old daughter who has always lived with me. She has cerebral palsy with developmental delay. Her cerebral palsey effects her legs (she walks with a cane) and she has extreme back pain. Her intelligence is low average. Her developmental delay shows in emotional and psychological problems. She is able to work as a secretary and seems to get along with everyone there. She goes to church and has many friends there also. Everyone sees her as a very sweet person and she is well liked by everyone.

Even though she has this sweet appearance, she can be a totally different person if she does not get exactly what she wants from me. She wants my total attention and is jealous if I give any attention to anyone else, even her best friend. She accuses me of caring more for her friend than I do for her. She has disowned this friend (they have been best friends since they were in kindergarten together) and turned totally against her and refers to her in the meanest terms and calls her all sorts of names.

This is just the latest problem. I noticed when she started through puberty that she changed completely. Whenever she gets mad at me over something, she goes into an absolute RAGE. She has thrown things at me and once totally trashed her own bedroom. When these episodes happen, she usually stays in her bedroom and won't even come out to eat.for two or three days. Another part of this same thing, is that she remembers every little thing that she says you did to her (usually these are very little things or things that she has exaggerated in her mind). When she gets mad, she will bring up things that happened 20 years ago. They may or not be true, but they are real to her. For example, when she got into this recent fight with her girlfriend, she brought up things that happened when they were in kindergarten.

She is offended over things that wouldn't bother anyone else. For example, the thing that caused her to get mad at her friend, was that her friend told me that she didn't like the way my daughter spoke to me and she was afraid that she might hurt me because my daughter threatened to hit me with her cane one time. My daughter saw this as a betrayal. She said that her friend should her told her that; not me. She felt that her friend had come between her and I. She was mad at me because I didn't tell her friend to talk to her about it. Her position is that she was betrayed by both her friend and me. This is just an example of the irrational way she thinks.

She is very paranoid and easdrops on my phone conversations. She recently overheard me talking to her brother on the phone. I mentioned that they were having a baby shower for one of her friends at work and she wanted me to take her shopping for a gift (she doesn't drive). I said something about the fact that they sure have alot of parties where she works and that her father joked that "if the cat throws a fur ball, they have a party". She was furious with me because she took it as a criticism of her friends and not respectful of the girl who is having the baby.

To make a long story short, I go around my own house walking on egg shells not knowing what is going to set her off. I have to go in the bathroom or outside to talk on the phone. I have to be careful of every little thing I say or do. Even though we go out alot and go to concerts and rock shows together (I'm 77, but I actually enjoy them), she gets mad if I won't take her long distances or drive at night in unfamiliar places. We go to at least one or two concerts a month, still she says I never take her anyplace any more.

Anyway, I'm at the end of my rope and I desperately need someone to talk to. I can't talk to family members or friends about this, so I'm hoping I can find "friends" in this group who might be able to offer some ideas and support.