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My father lives with my handicap brother and a son recently diagnosed with liver disease my dad has recently fell he can not walk and is now is in a wheelchair. I work and live within minutes from the home . I go there 3 times a day to feed, change and get him up and move my father. I did this with my mom for 5 years before I physically could not lift her anymore. I had to put her in nursing home and she passed within the year. So my parents did the spend down and we paid funerals. I know my dad will have to end up in the nursing home because of his hip replacement his legs are turning in and I may damage him more. I just want to make sure my handicap brother can stay in home he is 60 years old and I am trying to keep is live a normal as possible. My parents do not have any money do to my mom being in and out of nursing homes in previous years. There home is paid for but needs a lot of repairs more then he can afford. I am trying to do the best I can but I am 53 years old and wearing down fast. Not sure if I can let my brothers stay in home.

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Hi phizphiz I have found that since going onto low dose of anti anxiety med think it's Busbarone in US combined with Sertraline my depression has eased. Also check for UTI not always obvious symptoms but make my moods worse. I'd try to take up the day care offer for hubby and try to use that time to help son find/set up new life. Don't forget YOU time, then you'll be better able to help the others. Even if it's just a few minutes several times a day.
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Babalou-my husband was on this combo-sertraline, lorazepam,aricept and namenda. Did better for a while. Dr. stopped lorazepam as he slept so much. Then dropped aricept. Did better again for a while with just namenda and sertraline. Now not so good. He is becoming a bit of a hypochondriac. Will act up,pout etc. anytime I need to do something for my son,myself or anything that doesn't involve him or "his needs". I had to cancel my son's appointment yesterday because he was so out of hand and had me so shook up. I rescheduled it for today. Missed a important meeting yesterday evening concerning my job. Do you think I should make a doctor appointment for him and see if it could be a medication issue? I'm wondering if it's the progression of the dementia. I really want to follow through and support my son. These behaviors are making things so difficult.
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Phiz; Is your husband getting meds for his depression and anxiety?
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Oops meant Spring Chicken !!!
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Hi everyone. I just saw MentorsNeeded's post. Thank you for the suggestion. We live in Oregon and the program is offered in our state. I see there are other states that have it also. For a recap, my son with Williams Syndrome is 41. My husband has been diagnosed with Frontal Temporal Dementia (71) in March of 2014. It's getting tough. My son is having depression problems-is seeing a very good therapist and is doing better but has a ways to go. We moved about 6 months ago. My son has always worked about 20 or so hours a week since after high school. Has been in Special Olympics Bowling . The therapist believes that once he gets a job back into Special Olympics and involved in activities in the community he will improve. My son is ready to go for it. His caseworker is getting him set up with vocational rehab and he has ventured out into the community. He has signed up for dinner and swimming with the parks and recreation department. I believe the time is coming where I need to look into other living arrangements for him. I'm no Springfield chicken. I want to make sure he is stable first. I have faith getting back to a routine like he was used will be ok. My concern is my husband (my son's stepfather) I really believe his dementia -the behaviors associated with it and how it's changed him is a contributing factor. Today was a very stressful day with my husband. They are more and more frequent. My husband started going to a very good daycare once a week and he loves it. At home he is mopey and has no ambition of any kind. He expects to be entertained all the time and as all of you know that's impossible. The short term memory is very bad. He gets agitated easily and never remembers the mean things he says and denies it anyway. I truly wonder what I should do. I would love to have some feedback from all of you. Is waiting to get my son in a different living situation something I should do now or wait till he's doing better? I really don't think it's a good idea to do that right now. I will discuss this with his therapist and caseworker. Maybe a option would be to have my husband go to daycare the 4 days a week that they offer for the time being. Of course cost is a factor. But could swing it for awhile. I'd appreciate any AND all suggestions. Thank you all for responding in the past and present!
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I'm not sure what state you are in but California offers a program called California Mentor. They are a Family Home agency that works with adults with special needs by placing them in regular family homes as an alternative to state facilities. These homes are educated and equipped to care for these individuals, assuming they have no family or the family can no longer provide 100% of the care. It really is an amazing resource.
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Seems like we need a site for peeps with dev dis family as well as plain old aging. Am bookmarking this page, hope to correspond with all about this. I have a sis who is 53 and I am 63. We need to figure out the ins and outs of aging in this population. All health and discussion groups seem centered on education and not on the different needs of this population as we all age. Hugs!
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I am here, but don't have any answers. Getting by....just for today.
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Thanks Phizphiz. I agree with what you wrote. Although I've not been able to carry a child to full term I have been in the position of raising 10 children who's parents for various reasons couldn't do it themselves. All of my children bar one now live independent adult lives, parenting their own children and in one instance a grandchild! With each one it has been hard to let go, to step back and let them make their own way. I've tried to remember at each point that I'm a parent not a dictator. I've given them the very best life skills I can and now I must trust mine and their judgement on how they use those skills. The one not living independently I lost to a tragic mountaineering accident 11 months before my SO died. I know though that he died doing something he loved and happier than he'd been for awhile. Years ago I was "housemother" for 6 children 3-14 yrs old who were back then known as "mentally & physically" handicapped so I do understand some of the difficulties faced in these situations. Although it was my "job" it was more my vocation/life and I stay in touch with the people who now care for 3 of my charges from that time.
Letting go is never easy, but so much better for all if things are in place well before needed. I had always thought I'd be there for/look after my BIL until the end. Now I realise with my own diagnosis, that while there is no knowing the speed at which my life will change I need to have plans in place Now in case I can't do what I expected too.
Some think me pessimistic but I like to envisage the very worst scenario possible and plan how I'll deal with it. If it happens I'm ready, if it's not hat bad - great I've gained and I still have coping strategies to use for the next thing.
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So very sorry for your loss LucyCW and your recent diagnosis. Rainmom I know how you feel concerning your son. I've been with my William's syndrome son for 41 years and I agree with Lucy CW-you never know what the future holds or what is just around the corner. I would have never dreamed my husband would be diagnosed with Frontal Temporal Dementia. I'm 61 and know it is time to get my son situated in a group home setting. My goodness how fast time passes by. I remember the first time my son spent the night at a friend's house. I was a wreck! His friend is higher functioning and had my number in his cellphone. I called a few times to be sure everything was ok. Didn't sleep that night. I have to realize that I can't put this off. My other son will take over being his rep payee and make sure he is doing well. Of course spend time with him too. I know also it would not be good or fair for my Williams Syndrome son to be dealing with my husband's dementia. My time is already stretched think. I don't even know how long I'll be able to care for my husband. I need to give my son the best life possible. When you have cared for one of your children that many years and kept them safe it's not easy to let them go. But by setting everything up before a emergency will help insure a greater possibility of success. Tough though isn't it?
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Rainmom, I think your idea for your son is great. The only thing I would say is don't take too long in setting things in place. Sadly we none of us can predict our future and know what it holds. After 20 years together my SO and I planned to marry, he died without warning 4 months after we got engaged, 9 months before our proposed wedding. My BIL (twin of the BIL I care for) said he'd write his will at 64, he died this month a week before his 64th birthday. This week I was diagnosed with Dementia with Lewy Bodies. I'm learning not to put off things that need doing or that I want to do.
All that said you should be proud of yourself for the planning/provision you are making for your son.
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To all of you dealing with an elderly loved one with dementia or any health issues and a family member who has a developmental disability I am so very interested in staying in contact. I had posted a question about this. My 41 year old son with William's Syndrome and husband with Frontal Temporal Dementia. Will post morewhen time allows. Hard to find time. Definitely want to be a part of these conversations !!!!!!!
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I'm no expert, but I would check to see if there is an exemption for disabled children to stay in the home if father goes into nursing home while on Medicaid. It seems that I have read something about this. This is the route you are considering, right? Medicaid is applied differently in different states. Besides what you find out online, I would locate and consult with an Elder Law Attorney in your state who knows Medicaid law. They would be able to provide you with information so you can figure out the best course.

Also, if you brothers have been declared legally disabled, then they may have benefits that would provide for their care, such as in a group home setting. Considering the repairs needed for the house, it may not be feasible to keep them there indefinitely.
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My daughter is mentally handicapped and lived with us until about age 36. Looking ahead, we knew a group home was the better choice and though she didn't want to leave, got her placed in an excellent home that was just opening up. All the residents were doing this for the first time and it's one of the best group homes around. As soon as she was placed there, she "grew up" and started acting like an adult in charge of herself and helping the other ladies become more active in different activities. She did much better at her sheltered workshop, too, meeting all the goals they had set for her that she was resistant to doing before she was more on her own. As her father, I was the one who was dragging my feet with this move, but my wife was correct in her assessment about what needed to be done. She comes back about once a month for a weekend when she doesn't have any interesting activities lined up at the group home for that weekend and comes with us when we travel to meet family. She easily does both environments and it seems to be working great.
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GOD BLESS YOU......Your brother can be placed in an apartment for the handicapped....Is he on disability? If not, talk with his PCP & have it done & your worries will cease.
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If your brother has officially been deemed developmentally disabled , try to contact your Area Agency on Developmental Disabilities, you may have options you are not aware of such as respite care etc.
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This is my very worst nightmare. I have a 22 yr old severely disabled son - he is my only child and I'm not close with my brothers or their adult children. My son lives at home. After watching both my parent decline into a torturous old age - I am trying to face the fact that i need to start thinking about my sons future. Usually this subject brings on tears and near panic attacks so I think and plan a little at a time. Right now I have him spending a few days a week out with a paid companion(s) who work for a friend of mine who owns several group homes for adults with disabilities - primarily autism, which is my sons main diagnosis. At least once a week he spends a portion of the day at one of the homes - since he is no longer in "school" I think it's important that he remains exposed to his peers. Eventually I hope to work up the nerve to allow him to spend a night there - and hopefully work towards a whole week. Hubby and I haven't spent more than two nights alone (once or twice a year if we're lucky) since our honeymoon so we're a bit over due. My son is extremely well behaved, sweet and gentle but being an only child - and the center of my existence he is a bit spoiled - so living in a group home could come as quite an ordeal for him. Working my plan the way I am, I'm hoping that when the time comes he will already be familar with the group home life style and adjust quickly. Once in the new home I plan to visit a lot at first and then taper off a bit - old age decline may surely dictate this. Fingers crossed this is many years away. While your brother is quite a bit older than my son, is something like this possible for him? He may come to enjoy living in a more active environment with new friends around. Surely it would be safer than having him remain at home after your dad is gone.
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