I have a handicapped daughter . She is 37 and shes been quite ill . She is ADHD , and has other mental issues but she is not retarded . She is however borderline . She has been this way of course all her life and as a child , people just saw her as a goofy kid . Now all her friends have moved on in life and she is still a goofy kid . I love her with all my heart . She is not responsible for how she was born . On top of all the mental issues shes always been heavy . She weighed in at 11lbs 4 ozs and was 22 inches long and she never looked back . I have some obese relatives so I think this is genetic to some degree . The down side is that she has no impulse control and sees no consequences to her actions . So although I have not supplied her with lots of fattening food , when she became able to get to it on her own , she did . The past year and a half she has been house bound . Due to her weight mainly but she also developed lymphedema . Has sleep apnea and has to sleep sititng up. She broke the recliner I had gotten for her and could not get her feet up on a hassok so shes had her feet on the ground perpetually for years . I am limited in my resources and no matter where I have taken her , she either does not fit the organizations criteria , or they dont have the staff to acclimate her , or they talk to her and thnk shes just fine . She has a good vocabulary , knows a lot about things that really are just incidental and she has an amazing memory . Sadly she remember exactly what you said to her and applies it to other situations that dont really relate to the previous one . I have tried to explain her to the people giving her care , that if she threw a rock thru a window , and you said do not throw a rock thru that window again , she wouldnt but she might throw a tomato thru it , or pick another window . Its always been hard to cover all the bases with her . She takes things said literally . When she was a child , and we would start across a street I would say ‘Look out , and she would still walk in front of a car . Very scary . I asked her one time , why do you walk out in front of cars when I am constantly telling you to look out . She said I do look out mom , I looked way out there and I didnt see anything . sigh . So I had to say watch for cars and things improved but its like this about everything and it wears you down . You have to clarify every thing you say to her .
December 15 she ended up in the hosptial for ten days and now is in a nursing home . She got terrible bed sores from sitting on a chair and her underwear cut into her tummy and made huge lesions which became infected . She is now on a heavy dose of seven antibiotics to clear up this infection . This nursing home is giving her wonderful care but she misses me so much , and her dog . Maybe her dog more than me .. we wont go there . I miss her too and am so torn about her future . I wont live forever , what happesn when shes gone . Her father has finally taken all this seriously , we divorced 30 years ago and he only sees her occassionally although he lives just 20 miles away . His take on it is she just doesnt try hard enough and she need to exercise but at this point she can hardly walk . He denies her true problems , shes an embarrassment to him . Hes thin and never had a weight problem and hes a long distance runner so he figures she can do this and its a lot of stress on her . She knows hes embarrased by her . He never takes her anywhere in public and tries to avoid having her up to his house . Its a very involved problem
Now we are at point where shes improving and I must see the social worker at this nursing home to see what options I have . I am wracked with guilt . I had to work long hours when they were young ,, there werent good day care centers then , her older sister was in charge , they came home earlier than I did . Those times are gone and nothing will change them but now what ? No matter where I go , noone can grasp her problems . Even at the nursing home where she is getting phs threapy and great care , they feel she needs counseling . She has no insight she isnt going to sit down and explain her innermost feelings, she isnt going to make a concerted effort to change what she doesnt see as a problem . If shes happy in the moment thats as far as I can see forward . I am I guess wondering about suggestions for her future . I own my house . Its in a very private neighborhood , small , one way in and out , safe streets , she lived her all her life . I am considering leasing it to Mental Health and Mental Retardation after I die ( my older daughter will handle this ) with the stipulation that they keep my daughter for her lifetime and care for her .
Have any of you had situations like this and can you offer any suggestions ? I have to start planing for her future if I do not outlive her and I sure dont want to . I want her to have a decent life though . She does have friends that have come to see her . They are a blessing , they see her good side . Shes got a great sense of humor . ALways making people laugh . Shes got good communcation skills . Just that anything practical shes awful at . I have had her thru all kinds of job training and the SSI judge decided there was no job available that she could do without constant supervision and that no such job was available to her .
Im sorry this is so long and rambling but I need to vent and am sure my neighbors are so sick of me talking to them . If you know of a situation like this or have similar problems , would love to hear your solutions . Thanks and Happy New Year .
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Agreed. I never thought I was vain until I had a mastectomy at age 39. I was devastated and told the doc I wanted to wake up with implants. Now at age 60, I am lopsided and wondering if I was just avoiding the inevitable. You get what you get and you
Sounds very interesting.
Spike, you are awesome! Love your perspective, thanks for sharing.
oops have been divorced 30 years .
So glad you got it out. I believe you are doing the right thing in a nursing facility. You must take time for yourself and needs. From what you have said, you are a good mom, but moms need time to themselves. This doesn’t mean you don’t love her.
What a tough situation for you. You should go to your states web site and look up agencies that can guide you. Start with the department of mental health, keep searching and making calls until you find someonw who can guide you. There are legal agencies for people with disabilities and many support other services. Try the federation for children with special needs web site FCSN to find some links for you. ( This is in Boston, MA but might just be a place to start) . You shouldn’t have this burdon alone. You have been a great mom, your daughter is very lucky to have you. Please remember that if her health and safty are at risk sometimes being away from home where the care is 24/7 will actually make you sleep better down the road knowing she is taken care of.
You need to consider looking after yourself now - you need to arrange for your daughter to be in an environment where she can grow and be around others that may have similar situations. I live in Canada but I assume they have group homes in the US - I see this as a positive thing for both - you would be rested and able to spend good quality time with your daughter – it would also give you comfort that your daughter will be happy and safe no matter what happens to you. You are too hard on yourself - you have done a great job but itis time to more forward for the whole family.
Let me know what you think Magic
what you and kats have said is so true . In my mind I know what is best but its my guilt and my heart that is making this difficult . I have had her to all the organizations in our area . Noone would accept her , she didnt fit in any criteria to be accepted . She is a hard one to diagnose because shes so good at communicating . She can also be obstinant and hard to handle but recent change in her drugs has helped . I am going to go talk to a social worker at her nursing home for options as soon as I can make an appt and see what options are . Im not sure I can ever overcome my guilt even if she is put into a group home . Thank you for your support . I know I must do something because this is killing me .
I have not had your experience, but I cared for my mother for 18 years. She had Alzheimers. I was also racked with guilt when I first took her to a nursing home. After some adjustments on both of our parts, I realized I made the correct choice. I was so exhausted that I made myself ill (and almost died) trying to care for her and work and do everything and be everything to all people.
What I discovered when I adjusted was that mother needed more than I could do for her and by allowing those who can care, do so, I was able to be her daughter again. We were able to laugh and relax in our relationship again like we hadn’t been able to do because of my exhaustion due to the extra duties. You are not in this alone….keep looking for those to help you. Your angels are there, you just haven’t seen them yet.
Hi Fay, trust this new year brings you some solutions to this issue. It is hard when the issue is our child. No matter how old they are. re: your daughter’s weight problem, 90% is the diet, 10% is exercise. Someone put it very bluntly on TV…. to burn 500 calories you need to do one whole hour of spinning. Spinning is a hardcore exercise and not too many people can do it. To gain one pound you must eat 3,500 calories, but i believe as we age the numbers are a lot lower. I have not eaten 3,500 calories per day in years, yet i gain weight daily if i did not watch what i eat. So, if your daughter stopped the junk food she will lose the weight. I imagine she does not have many things that make her happy and food is basically the one thing that does. So somebody needs to pay attention to this girl’s diet and replace the bad choices with delicious alternatives. This is a very hard job.
You do need to start making plans. The sooner the better because whoever is going to be in charge of your daughter needs to know her well and you need to train them on the idiosyncrasies as you explained in your post. Let us know how you do. May the Lord guide you in this endeavor.
Thank ou for your response Lynnette . And to all who answered my rambling diatribe lol I am formulating a plan , going to talk to social worker , find out what my options are , get some repsite help from United Disablities at least for the short term . There must be some answers if I delve deep enough and keep up the pressure . Someone has to have a child like this too , not just me . I feel better knowing Im not the only one . Thank you . Fay
All I can say is good look and stay strong. I am a mother of a disabled child, now adult, who lives in a state institution in New Jersey. That was my only option. However, they have taken wonderful care of her and kept her alive for 30 years. She should not have lived past 5. This is her home and the staff is her family. I am her legal guardian, but she no longer recognizes me. I have learned to accept this and understand it. So all I can say is good luck. Perhaps you should talk to a good lawyer – one that is experienced in dealing with the needs of the disabled.
I am raising a little girl who was pre-natally exposed to alcohol who is now 13 years old. People with Fetal Alcohol Spectrum disorder have many similar behaviors. I’m not insinuating you drank while pregnant but perhaps your daughter’s brain was altered in some way by environmental or other toxins while pregnant or a young child that give her similar characteristics. Most kids with FASD do not have the face they discribe, or MR, most have normal IQs but don’t apply it to life or do higher math or abstract thinking.
The meds your daughter is on may contribute to her weight issues as well as institutional refined carb foods. The impulsivity, concrete literal thinking, unsafe actions, immaturity and inability to keep a job and good verbal skills but low social/emotional developmental skills (sometimes 50% chronological age) are common with FASD so you may find support from that community.
in California she could get someone assigned Conservatorship over an adult to dole out and handle her SSI monies. In other states it’s called Legal Guardianship, but some states (like mine) that is for under age 18. It is very hard and expensive to get one on one supervision for life, especially with recent cutbacks in state & federal funding for programs. They focus on Independence, which for vulnerable people with permanent brain damage is unsafe. They can be victimized or get in trouble with the law. Find an advocate through Dept of Developmental Disabilty in your state. California has Regional Centers. Since your daughter gets SSI she would most likely qualify for something;Life-skills training, supervised job w/ job coach and part-time job menial job they give to people even with significant mental retardation or Down’s syndrome, just to be active and involved in the community and productive. She could volunteer at the library or local animal rescue, box books, sort screws, roll silverware in napkins, something. She must be depressed with no focus, goals or helping others but mild exercise like walking & stretching & fresh healthy food and sense of purpose in life will help her mental outlook and serotonin level. Form a support community of her friends, spiritual community and service providers if you can.
Hope I’ve said something of help.
Its so helpful to hear from others in similar situations with more experience in finding solutions . Thank you so much . Some of what you say does apply to our situation .. I am not a drinker but when I was pregnant we went out to a bar/reastaurant and I had one beer . I often wonder if that one beer could have done this . Perhaps being almost a month late before she was induced , or even having a vaginal birth instead of a C- section . I lost three babies during my attempts to have children . Her sister is fine . Smart , thin, able to have a good job, able to have a family , friends . Hard for my other daughter to see . I however know that no matter what caused this , shes definately got serious problems and its going to be a long haul . Friend has a profoundly retarded daughter and they bought a group home for her with the stipulation that the organization take care of their daughter for life . I am thinking of making this same decision with my present home but if I live a long time or am unable to move somewhere else in the mean time it will be of no value . I am formulating a plan however and hope that I can find a way that will be good for her and for me . I truly appreciate all your comments . Sometimes its just good to get stuff out. Thank you for your kindnesses . Fay
No, not one beer. It’s in the genes…unfortunately she received bad set of genes. Not your fault, and not her fault. You’re on the right track, in the long run…you’ll be better knowing she’s care for.
Sounds like you’re on the right track. While she there, take full advantages of what assistance are being offered. Even in assisted care living. Trust funds can be set up, monitor either by family members or local social worker which will oversee her care are being provided. Also, she can become ward of the state, they too will provided her care with Medicare and other funds which are available for caring of a disable person. I know I can not feel the pains or guilts you’re having. Right now, you’re doing what can do….mainly to see that she care for when the time comes. Also, you are aware you won’t be able to care for her as you grow older. Talk the social workers, your family, your other daughter get their feed backs what best for her. Options are out there. Good luck.
It looks like she may be cut loose from Nursing home at the end of the month . Her wounds are healing and the infection has improved as had her walking but the problems are still there waiting for her to revert to her former life and shes got no impulse control . I talked to the social worker at the Nursing Home and the once willing to help young woman now left me very few options , she will “Try” for a bariatric bed but you know that insurance , they usually say no. I called United Disablities in my town and noone was there who could talk to me .. all out on vacation even today Jan 5, I am getting a bad feeling about this again . Once again its going to be all my responsibilty to get her to be responsible and follow the rules. She will be stuck in our house with no transportation while I work because I must , and this will end up being the same as it was before . God send me some help , please .
Not good. Go back to SSI and search http://www.ldonline.org/experts/techexpert. You can chat with them online. Contact your state Department of Social Services to see if they can assist in helping you. The Adult Services division manages the operation of programs providing services and benefits to older and disabled adults. These programs include adult protective services, guardianship, State/County Special Assistance for adult care homes and in-home, adult placement, at-risk case management, adult care home case management, and several counseling and case management services to support older and disabled adults living at home. Keep trying… What state are you residing?
oh thank you , that is a great idea and Ill do that . Have had to return to work so Im not here monitoring as much . Another question for everyone . Do any of you have any idea what you do about underwear with someone this big ? I am totally out of suggestions but the idea of her going commando the rest of her life is scary even to her ! I hate thinking I may have to start making her underwear cause it took me six weeks to make an apron in 8th grade and then it didnt fit me . Yikes . She cant wear traditional undies because of the elastic being stretched across this area where the wounds are and getting the same results . If anyone has a clue about this please let me know. I also know what is wrong with my girl now too . Aspergers syndrome . My older daughter and I have thought this for about five years but not much was known about this spectrum of Autisim . Now there is a plethora of information on line and its been sad but gratifying to finally know what the problem is . The many symptoms fit her to a tee . She could be the poster child . Thank you for offering support . I often feel like I am out here on this limb all by myself . No help and no answers has been the norm and I have had her everywhere . Damn the criteria cause that is what shes up againt all the time . No Aspergers support groups here as of yet .. maybe a plan for the future . God bless all and have a great day
Fay, you may think this is off base but i am the type of person that i try anything when i have to and happy to inform you i have gotten results, because i am kind of crazy sort of and kind of naive at the same time, that did not know that it cannot be done, but since i did not know, did it and it worked. That is why i have the job i have and have travelled all over and been blessed. Have u ever thought of writing to Michelle Obama? She is a mom and she may be able to get those agencies that are now ignoring you to move their butts. I have done this when i was younger in Connecticut for people in distress. I used to be their letter writer since most of them did not know how or did not spoke any English. At that time i did not write to first ladies, although i have written to a few Presidents and received responses. I wrote to the Governor of our State, and you cannot believe the difference when the letter gets forwarded to the agency from the top guy. If i was u i would sit myself down on the computer and send them both, Michelle and your Governor a letter via email and also via regular mail, just in case the first security person trashes it, you still have another person receiving it via regular mail. Still do what the others are telling u to do, but do this now. I have a feeling that you will receive help and not just help but excellent help. I am sending you my good energy and prayer so that this comes true. I feel it! YOU HAVE NOTHING TO LOSE AND EVERYTHING TO GAIN.
That is my next step .. to contact my US Senators and see what they can do . Thank you , and Blessings to you .
Lynette I dont think anything is nuts or off the wall or a foolish idea , look at how many things have become common useful products or organizations from an idea others thought were silly . You keep thinking like that . Its a good thing .
The Healthcare issue is now HOT in Washington and your situation is the typical thing that the Obamas as preaching. You may be on TV someday because they will put you on TV to prove their point on one of their televised Healthcare forums. But that’s a long shot. What i like about the Obamas is that they were regular folk, they have been at the bottom, seen what we go through in our daily lives. Michelle came from a dad that worked hard became very sick at an early age and died, leaving their mother to fend for them. Barack Obama, we all know his story. They know our pain and they surely love their daughters. You are in a win/win situation.
PS , I live in Pennsylvania
http://www.disability-social-security.us/?gclid=CIDB07-Bn58CFVFM5Qoddh8Lng
http://www.pennsylvaniadisabilityattorney.com/
Try this two website…. might help.
one more
http://www.nolo.com/ldir/browsebyresults.do?locationId=1893&specialtyId=306&searchNear=Philadelphia,%20PA
Also they may have a visiting nurse program to come to the home and check her wounds and other health issues. There is usually some form of door-to door transportation(our bus service has a mini-bus program)for disabled or elderly people who can’t use regular buses to get to doctors appointments, shopping, etc. It’s a little more money than typical buses($3 each way here) but accomodate walkers, wheel chairs, etc. and will help with packages. Here they pick-up and drop off others as well on the same trip, so sometimes you’re riding around for an hour depending on that days schedule, but better than nothing.
I’m wondering if large men’s boxers shorts would work as airy undies. You could stitch down the fly or get ones w/ button fly. The elastic is wide and covered and not binding as womens’…and mens undies are better made and more practical anyway and often even cost less. She could even wear them under her belly like men or pregnant women often do.