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Caregiving for Adult with Special Needs

Discussion in 'Non-Vegas Chat' started by katmu, Aug 13, 2015.

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  1. katmu

    katmu Well-Known Member

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    I know this is a longshot but I'm hoping maybe some other VMBer has been in a similar enough situation as me to offer a little advice. My 24 year old son has both Autism and what has so far been diagnosed as Bipolar disorder. Over the last three years, he has also had 4 psychotic episodes, 1 that resulted in legal issues and 3 that resulted in hospitalization. He currently receives Social Security and has a case manager assigned though the county in addition to behavioral and nurse services.

    Here is the current situation and what I'm struggling with. His new case manager was assigned about 2 months ago and this is her 1st job out of school so she's trying but is very inexperienced. The county is trying to push to have him placed in an independent apartment where the behavioral workers would check on him a few times per week and the nurse would visit once per week to set up his med machine. I have very serious concerns about this plan as even with the med machine, I still have to remind him to take his meds 3X a day and his doctors have been advising me for a long time that he isn't going to be able to be independent. He seems very anxious about the idea of being mostly on his own, even though he would still live within 15 minutes or so of me.

    I'm considering that I may need to push for guardianship and look for a private solution to the housing situation but that is the part where I'm not finding a lot of good advice or resources from local agencies. I know that given the size of the lot my current house sits on, I could either add on or convert some existing space to an accessory dwelling unit (granny flat). I would prefer that we work towards him having more of his own space. I had looked at the possibility of a duplex but most of them are not in a condition I would be happy with. A lot of the caregiving is obviously still going to fall on me, which is not ideal, but that would give me more time to continue to advocate for him to the county for more services.

    I don't feel like any of the options I have are great, so I'm wondering what others with family members with special needs might have done. Thanks in advance.
     
  2. LucyR.

    LucyR. VIP Whale

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    YOUR SON is too young to be left alone. He needs to have someone to give him his meds and keep him company. MY advise is to still be part of your family. If you isolate him to live in his own space in your house he will become a recluse and you will end up having to give him his food and meds by leaving it outside his locked door. That is not a great life for him.let him stay home 5 more years. He needs time to grow older. Believe it or not he is still too young to be on his own because he is bipolar. You need to hire someone willing to help you out with him. He needs to stay social. If you create a space for himself he will never learn to be around other people. He will then need to be dragged into a care facility as he gets older. Find things for him to do with other people. You are so lucky he is willing to take his meds. My son was bipolar and he died at the age of 32yrs. If I had to do it over again I would have let him stay home with me where he would be safe. My idea may not be the best advise because you also need to have your own life. Most likely your family members are not willing to help out because it is a great responsibility. I know you are tired and would like to find the right place for him so keep looking for a social place/housing for him with a 24/7 nurse.
     
  3. Hobofrank

    Hobofrank Prime Minister of Idiocracy

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    Lucy? Was your son physical towards you or others?
    Big difference re: socialization
     
  4. breanna61

    breanna61 Super Moderator

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    Those with autism are not very social by nature of the disorder.....normal "social" activities lead to discomfort. Kat is also dealing with the additional diagnosis of bi-polar disorder and a past event leading to her very real concern that her son's living arrangement ensures that doesn't happen again. An assisted living arrangement where it is ensured he receives his meds regularly would be ideal.
     
  5. kleland

    kleland Tourist

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    When we had to start looking at options for my inlaws (yes, I realize not the same), we ended up with the best solution of having them live next door to us. They were able to live independently and we were close enough to look in on them daily. Admittedly this can be an expensive undertaking and I do not know your financial situation nor do I know how the housing is in your neighborhood, but for us it was easier than building a guest house and still gave us all the privacy we wanted without them feeling like a burden. It is a shame that the duplexes aren't in better conditions as that sounds ideal. I hope you find a solution that fits your needs as well as your sons.
     
  6. katmu

    katmu Well-Known Member

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    Thank you for all of the thoughtful responses.

    The issue with the meds isn't so much an outright refusal to take the meds, but more of an issue with follow through. If he's asleep when the machine goes off, he will hit the dispensing button but then set the meds aside and go back to sleep.

    My family is willing to help as much as they can but they are all out of state. I had considered moving to be closer to them but that would mean getting services set up again in a new place, selling my house and changing jobs.

    And to Breanna's point, he's never been very social even before the mood disorder developed. He does go to some card trading or comic events but other than that he is mostly socializing with the workers, his younger brother or me. I think an environment like a group home, where there is some built-in socializing plus staff to ensure he's taking his meds and making it to appointments would be ideal, but the county is trying to cut back on the number of placements into group homes so it's going to be a fight.

    I think the issue with the duplexes is that most of them seem to be rentals and not owner-occupied so that may be the reason for the condition.
     
    Last edited: Aug 14, 2015
  7. Flowers

    Flowers VIP Whale

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    Katmu,

    I don't have any specific advice for you but I will keep you in my thoughts and prayers as you sort through the options. Like millions of folks, I have had family members with both physical and mental health issues and it is amazing how challenging it can be to work with the health care system to ensure loved ones get the health care they need, and that's even when there are not significant financial issues. No advice but sending positive thoughts your way.
     
  8. Frankr163

    Frankr163 Low-Roller

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    I can relate to your dilemma. I was a caregiver for my brother with downs syndrome for 10 years after my parents passed away.
    He was rather independent when he lived with them and continued as such with me. Going to a sheltered workshop and planned recreational activities with his co-workers was as assimilated as he got. I looked into a group home at first, but he was vehemently opposed.
    Two years ago, he was diagnosed with early onset Alzheimer's, and began requiring more and more hands on care. I was unable to be there 24 hrs. a day and looked into residential placement.
    I went through a half dozen Medicaid service coordinators, before I could find one I could work with, and that I thought had my brothers best interest at heart.
    Remember the MSC's are there to assist you and your son. Do not be afraid to request a new one if you need to. You may need to even research other agencies if available.
    Placement may take some time due to availability and funding, so be patient.
    Long story short, he is now in a group home with similar individuals and LOVES it!
    I now know he is getting the 24 care he needs and that unfortunately I could now longer provide. The transition was tougher on me and wife than my brother.
    The decision was difficult but ultimately the right one.
    I hope you are able to find a suitable situation to best accommodate your son and yourself.
    Be patient and remember you are not alone.
     
  9. joesmom

    joesmom Low-Roller

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    Katmu - first of all my heart goes out to you and you sound like a great mom. I like your solution of a private type residence on your property. It may give him a little independence and you some private time too. I understand your concerns and I hope you don't mind me asking what arrangements have you made for his care after your passing. The reason I ask is because I am in a similar position and not sure what to do.

    My older brother - by 5 years - was hit in the head with a horseshoe when I was a baby. He has brain damage that has left him emotionally about 14 years old and mentally about 7. He went to special schools and is able to read and write minimally but he can care for himself. When my mom was dying she asked me to make sure that he is taken care of and I promised her I would and have for the last 25 years. I have employed him as a cleaner/ helper for my company for the last 20 years to provide for his living. He really isn't a good worker at all and I don't think he would be able to get a job on his own. He does get Soc Sec - but it isn't enough to live on. I worry that he will out live me and really had/have a scare because I was diagnosed with breast cancer last year - it was/is an aggressive form - so I worry about its return especially in relationship to my brother. Financially - I am not in a position to set up a trust or anything for him. I have thought about asking my daughter to watch out for him if I am no longer able to, but I know the ramifications of that commitment. So my question is what do you have set up or do you have anything set up? These thoughts keep me awake at times.
     
  10. katmu

    katmu Well-Known Member

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    My ex-husband and I have met with an attorney to start thinking about setting up a special needs trust. Our main issue with moving forward at the moment is finding a suitable trustee. Our younger son, who is now 23 and is supportive of his older brother may eventually take on that role once I'm gone but I'm trying to wait until he is more established before seeing if he wants to make that commitment. Our only other option realistically is a paid trustee and I'm not sure if I'm ready to go there yet.

    I truly appreciate all of the replies. I debated for a while about posting this. Maybe I'm just tired, but I don't want to have to pretend that the biggest thing going on in my life doesn't exist because of the stigma around mental illness. I think until families like mine can start talking openly about the issues we face everyday, the system isn't going to change and the stigma will persist. Even if people don't have specific experience with a situation like this, it's been helpful to get feedback as sometimes I start to feel like I'm too close to it and maybe not thinking as logically as I normally do.
     
  11. Hobofrank

    Hobofrank Prime Minister of Idiocracy

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    Frankr has a point get rid of that Newb caseworker
     
  12. katmu

    katmu Well-Known Member

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    I'm looking into other agencies, although the last case manager from this agency was the best that we have had to date.
     
  13. LucyR.

    LucyR. VIP Whale

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    I have been thinking it over and I think my main concern is that your son should not be left alone. He doesn't need to be social with other people. He just needs to be surrounded by other people. The other people will be able to just know how he is doing and will be able to tell if he has changed for the better or worse. I told you my adult son was bipolar. He lived alone in a house and he died alone in his house. This is why I think he needs to be with other people.
    I think all of you who are in a situation where you feel you may nolonger be able to care for your loved one.... should have the guts to ask the social worker what other options are available from some agencies that are financially supported by the Federal Gov., State, or City, or Community.
    You will never know what kind of help you may be able to get unless you ask.

    I have informed my senior Mom that if she falls one more time because she is breaking our rules to be careful and to always use her walker.....she may have to be taken care of in a Senior Home which is her greatest fear. Only a 24/7 facility will be able to take care of her needs. She is lucky she has us three daughters to keep an eye on her. But she is very ungreatful at times and thinks she can still walk without a walker. I notice many seniors have that problem of thinking they don't need a cane or a walker. My sister got my old dad a walker and he said they were for old people and my sister said to him he was old. My dad was in his 90's and lived to be 96 yrs. old. He stayed in his bed for his final days since he couldn't move his feet anymore. I am a senior now and I go for physical therapy so my legs and body stays strong. I don't want to end up like my dad
     
  14. katmu

    katmu Well-Known Member

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    My primary concern with the county's proposal for the more independent arrangement was the amount of time he would be spending alone, without someone to monitor his mood. That is why I'm pushing as hard as I can for a more supportive setting.

    I'll report back on how we make out.

    Edit: I'm sorry to hear about your mom. I think you are right about doing what you can to stay healthy. My mom is still pretty active and I think that has a lot to do with why she is as healthy as she is.
     
    Last edited: Aug 16, 2015
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