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Probably TMI - but I need to talk, and I know you guys won't give me the religion 'feedback' I've gotten about my disabled son in the past from others.

99% of the time, Collin does great with things. He's basically got his toileting down - but there are nights (or mornings) where he doesn't make it, and it feels like a Mr. Hankey attack in a South Park video Game.

Now, usually, I am perfectly able to handle this on my own; but I dislocated my shoulder the other day - and it's complicated things. Fortunately, my darling daughter is still home, and helped out more than I would have asked. So all is well

But, as most things do, this got me to thinking. And I'd never say this on a forum where she could see -

What and I going to do, when she goes out into the world, to live her life?

I refuse to bog her down in a life of helping care for her little brother, or for me. But, considering the years of solitude (and the lack of finances) - I can honestly tell you that I am scared.

My mom told me to date a woman so I'd have some help; I reminded her that she had raised me to not use people. And while I am not afraid of dating, it will be for companionship, and love - not to have them help me with my man-child.

It gets complicated really quick, doesn't it.

Any thoughts? I'd appreciate hearing from you.

DerekD 7 Apr 14
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27 comments

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8

Because you live in a nation that lacks proper healthcare and social services you face these kind of problems; everything falls back onto the family and charities. Charities are invariably religious based in the US.
People in your position here have enough problems with universal healthcare and social assistance programs like AISH which provide income for the severely handicapped. I can't imagine coping without these things.
Here we have group homes where severely handicapped individuals receive care under supervision of their gaurdians and trustee which can be public or a relative like you. Care is payed for be the AISH program and through further government grants and programs. Most of these home have 3 to 5 residents and are staffed 24 hours a day to the level of care required.
Is there any option like this for you and your son where you live?
Many homes here also operate relief beds to help out people like you who care for their family members at home and need to take a break.
I realize that I live in a progressive nation but, many of the programs here were modelled after programs operated by US cities and states.

7

I know of no easy answers either. Your story has made me think of what I would do in your situation. I believe I would have to leave Alabama.

My much-gerrymandered state of North Carolina has lost some of our many social programs due to a GOP legislature over the past 10 years, but it still has better safety nets than Alabama. You may want to consider blue states where liberal social programs are more plentiful, for instance Massachusetts or Colorado. Basically anywhere in New England or on the West Coast.Without a significant move to a state with a better economy and disability care programs based on income, I would be very worried as well.

2018 midterms are looking better now that 41 Republicans have declined to run again for their congressional seats. I won't be comfortable remaining here in NC, however, until Bobby 3 sticks socks it to Trump and we get universal health care across the U.S. #MullerTime

Until then, were I in your shoes, I'd move to a state with a more robust economy and social benefits. The best place would be a state with a Dem governor and legislature. In all honesty, I know AL is home, but I can't think of many states worse for your son's future, especially after you are gone.

I think this is good advice. Some states have a lot better social welfare systems than others. Here in Oregon, DHS would get you some in home care help that would not cost you anything.

Also a burden shared is much lighter, but that is something a potential partner would have to decide for him or herself.

hemingwaykitten is a smartie, lol!

7

In a civilized nation, there should be professional help available for the disabled. Is your son formally approved for disability? Have you inquired into home aid options? Home medical equipment to help with toiletting? Respite care for you when YOU are hurt and need time to heal?

Technically, Alabama does have a respite care program - on paper. It has been un-funded since 2009, so for all practical purposes, it doesn't exist.

Ugh! I lived in Mobile for 5 years in the mid-to late 1990s. My first professional social work job was for the state. Dear Governor Fob James saw fit to freeze all state employee hirings, promotions, and raises, indefinitely. I left as soon as I could. Interesting how the states who pride themselves in being most "God-fearing" do the least for helping those in need. So much for their Christianity being "a light unto the world."

6

Have you looked into getting professional assistance, such as a home health aide or something?

6

Sounds like you need a healthcare professional. Did a google search and noticed a couple inhouse organisations. One was faith-based but charitable. The others were privatized for profit. Don't know what your finances are like. Don't know how you and yours feel about having a stranger in your home. But a dispassionate professional might be an option if you can afford it.

finances are the issue. Since my baby boy was born disables , he only qualifies for $500 a month in assistance - which won't cover a week with a good assistant, let alone a month.

He'd get more in Social Security benefits if I had died; and the programs that are supposed to be in place exists in Alabama - but have been unfunded since 2009 (which means they exists on paper, but not in practice).

@DerekD Try calling your senator's office. Someone there may be able to help.

@DerekD He should be able to get Medicaid. That's federal so he should be eligible. They cover in-home support services. Since he qualifies for monthly assistance he should also be eligible for all their other services.

5

We all come with baggage and if you find the right person they accept that the baggage is part of the deal. You obviously come with a lot of love, loyalty and determination, that a disabled son is also part of the package should not be a problem.
The end game of course is scarey because the day will come when you are no longer physically able to look after your son, the fact that you live somewhere where there is so little support is horrible but you can hope that society will have become a bit more civilized before that day arrives. Or if you're lucky your daughter will be settled with kids of her own and an extra manchild won't be such a big ask, just another one for the tribe.
There are no easy answers to this one, I have friends in the same situation, but worrying about the future only sucks the joy out of the here and now.

Kimba Level 7 Apr 15, 2018
5

Our family had the same problem. We are probably quite a bit older. 18 months ago we placed my mother and sister in an aged care facility. It was such an improvement for all concerned. Especially my sister, now she has professional carers. It is not perfect, my mother complains about food all teh time, bnut then she has complained about everything all her life. My sister totally loves it. I know, sadly, different country. But if you do have the option os accomodation, it would be worth investigating.

5

Does he qualify for any assistance through insurance?
Can you get a visiting nurse or care assistant in part time? (Without paying through your nose.).

I know that's only a bit of a solution.

You are absolutely right - one person caring for someone's needs is a very scary place to be. Especially when an injury occurs.

My sister is caring for her Husband with Advanced Parkinson's at home and it's not an easy thing even with caregiver help and his brother and SIL living next door.
They at least can help get him on his feet again when he falls - but she's also had to call EMS.

I don't know the answers - but definitely look into what benefits he could receive. (Maybe a social worker or call 211).
If he weren't living with you he'd be in full time care and they'd be footing the bill for that. Perhaps insurance will provide some help.

Also 211 can tell you what is available to you in your community. There might be groups that would be willing to help spell you now and then. Particularly when your daughter is no longer home.

I hope you are getting "Time off" now and then? You have to take care of yourself too.

4

Human beings need each other, so let that be your pragmatic mantra as you search for a partner. When you find one, her human nature will guide her to help you with your son, as your nature will guide you to help her with her problems, as you offer her access to your humanity.

3

Five years ago, my life changed. That was when I had colon resection surgery. A nice man came and literally cut me a new bunghole--and I thanked him for it. It saved my life.

It was only the beginning. Since then, I went to sleep feeling relatively normal one night and woke up the next morning with no feeling in my hands or feet ("Peripheral Neuropathy" ) and was diagnosed with Fistulizing Crohn's Disease, a gift that keeps on giving. Needless to say, I am disabled, though I'm fighting like hell to rehab myself and get back out into the world.

It is getting better over the years, but I have had problems getting to the toilet on time. This only happens a couple of times a year nowadays, but it still happens.

I limit the damage by wearing a "booster pad" in my drawers. I would like to suggest that this may benefit your son as well. I also have noted where most of the Mr. Hanky Attacks occur and made those areas particularly easy to clean.

I hope that offers you some practical help "in the trenches" rather than mere moral support, though I do obviously sympathize with your plight.

Peripheral Neuropathy in my feet. I figure some day I'm going to entirely miss a step and tumble. Just enough sensations to drive me a little nuts.

It's really quite the gift. Fortunately I got my Type II Diabetes under control before it hit my hands as hard. (My numbers weren't even that high?). So baffling.

I can't imagine waking one day with all of that! gees... Condolences.

3

I don't know what to say, I am lost for words. All I have to say is that you are one hell of a man!!! I don't know if I could handle such a burden. We take out health for granted, don't we. Whoa....

3

What about a group home for him?

I know that, one day, simply because of practicality, that may have to happen. However, I have very strong feelings about that - partially because of the situation with the kids birth-giver (she left five days before Collin's 4th birthday). I'm not looking forward to a day when I can no longer care for my boy. I think it might just be my undoing.

@DerekD They have attachment issues? I did when I was younger and moved around. I was in foster care once, a few group homes, lock-down treatment facilities for kids, and now I'm in assisted living for adults. I hate that I've been shoved around most of my life. I was adopted at age 2 from Vietnam, and at 16-years-old is when I was removed from my adopted family. My dad molested me, and I got put into a psych ward because no one believed me. Same thing for my sister. She went into a group home later on. She now lives with a roommate and is getting married in May. I want to go, but the only free place I can stay overnight is with my dad. His sexual comments to me make me mentally ill again, and I don't want to go back into a psych ward. I've stayed out for 2 years now. That is the longest I've ever gone. My sister understands why I won't be there. I'm sending a gift card to her with my aunt.

2

Not knowing any more about the situation than you have shared, it is possible that you qualify for Medicaid, which will open up numerous doors for you in terms of assistance. There should be a community agency near you that employs a social worker who can assist you with applications for assistance with both medical needs and other needs that may arise in raising a special needs child. Family Services, or even your county's Board of Services may be a good place to start.

I admire your integrity in not looking for a partner to use for assistance. My guess is that in the long run that will serve you well.

2

I scanned through the comments a little to get an understanding of your situation. I think you are right to consider you need to figure out how to address your sons needs without imposing on your partner... but it doesn't preclude some looking while you are trying to figure that one out. Have you considered moving to a state that does have a better support network for folks in situations as yourself? I've moved a lot in the last 12 months, it's an ordeal. But it might be an option. I guess you'd have to shop by state to see what they have set-up?

2

Gracious!
Makes me more grateful for my own circumstances.

Perhaps you can get him on SS disability and find an elder day care center for people in his condition, as they had in Morehead, KY, when I lived there.
People would bring in elderly relatives and adult children with mental disabilities to spend the day there with caretakers, in structured activities if wanted, or just to hang out with others to give the caretakers a break.

He's on Supplemental Security Income (SSI) - but does not qualify for 'disability' , since he's never worked.

It is a strange clusterfrak they have built... but the assistance available doesn't cover much.

@DerekD One thing we did with my elderly dad when he was in a wheelchair and in diapers was to privately hire a caretaker to come in for 5-6 hours each day. This was in eastern KY where many such people are willing to earn extra cash taking care of the elderly and handicapped.

The costs to us were minimal..we only paid a couple of dollars above the minimum wage per hour, but that trumped the wages of most low level jobs in that area. In our case, the caretaker asked for cash, to avoid tax problems and because that was the usual arrangement in that area, but dunno what your circumstances are.

1

I think that on a date, at an appropriate juncture, it would be honest and important to tell her about your son and your life with him.

1

There are programs to help people pay for care assistance, and your son is probably eligible for SSI benefits (you apply through social security, but it gets paid out through you State), if you live inthe U.S., which might help some.

Despite beign legally blind myself, I have doen my best to maintain my own independence and not really been a part of the "disabled community". so I really don't hav emuch more ideas or info.

1

All I can addis be who you are and do what you gave too. Life has a habit of resolving your problems at the least expected moment. So hang in there big man, and just be grateful for the daughter you have. She will make up her own mind on what she wants to do.

1

You have a long and beautiful road ahead! Depending on where you live, there should.be programs or support groups that can help you and get you the support you deserve. Your daughter probably feels the same thing! especially because it sounds like you don't force her to be a caretaker unless you are physically unable to. Maybe she would benefit from being part of that journey. Your son would also benfit from meeting some other families in our community or nearby.

I live in Alabama - the programs exists, but have been un-funded since 2009. So they only exist on paper - not in any practical, helpful way.

@DerekD that's terrible!
Well I have an online group for a.condition that i have. It helps a lot and some of the people are from across the world! It's really uplifting and helpful. Maybe there's something like that for you?

1

Wish I had more to offer than just encouragement. Alabama doesn't have much to offer it's citizens with physical/mental health challenges. I'm in Georgia, it's not much better here. I most definitely disagree with your mother, though. Hers is a terrible idea.

1

I really cannot help you on the medical services stuff as I am not an American. Also there are many good advice and caring thoughts in the comments below. One angle you should consider is to ask your daughter to participate in building a plan with you (not for you). She may have some insight or willingness to problem solve this that you may not have thought of. As a parent, we think that discussing our concerns (weaknesss) to our children (whatever their age) is selfish but our kids also have our best interest at heart and having somebody else trying to problem solve is always a good thing.

1

I lived in USA, I genuinely mean this, you deserve so much more in respect to social and health care. Is there no respite organisations that can help support you? As regards a partner, having a disabled son would not have put me off so I am sure that there are women who would love to be part of your family. Much love

1

Are you worried most about the cleaning up of him or the house?
If the former can it be turned into a ritualistic game where he learns to disrobe, dunk them in a handy bucket or barrel, dance into the shower and wash himself clean then dry?

No; even as my own health has issues, I can still keep a clean house. Of course, my daughter makes things easier - I can bather the boy, and tend to his personal issues, when she is here and helps with the other cleaning. It makes a task that would be an hour plus into something that is 20-30 minutes.

But as I get older, I know I will have more issues; we all do. And I will not always have this level of help.

THAT is what scares me, my friend. Will I still be able to do for my boy, what needs to be done, in a manner than is still useful? And, as I do so, will it tear me down to the point where I simply can't physically do it anymore, without help?

And if I need help... no. WHEN I need help, how much of a burden will I be on those I love? On those who will help... who have their own lives to live.. their own worries, and challenges? How much harm will I be doing, when I don't ask, but they see the need anyway?

There is no easy answer that I can find

@DerekD I fully comprehend the problem having once been an unapreciated or wanted carer, another time just an unrecognised and abused carer and then recently seeing the problem from another angle of how children now only see their still very mentally competent 92 year old father as having lived beyond his use by date and not divesting himself of his hard won assets for their wasteful desires. Here in Australia they brought in a proposal to save money by having the elderly obtain carer help to enable them to continue living in their homes rather than full on hostel care. Two years on there are close on 200,000 elderly waiting for help.
What I'm sadly saying is that the only way I can see a successful outcome for you Derek it to get a number of other parents in similar position to form and start off a self help cooperative. From there move to looking at buying and developing your own community on an average.
Think about it and get back to me if you need any suggestions - I grew up where co-ops were invented. ?

0

Community, community, community. Any kind of interest group you can think of. Join and associate. You will meet people and people will meet you. I understand that you don't have time. You will have to find or make time as you can. And you should be not afraid to bring Colin with you. Open up yourself and your life and love will come pouring in.

0

Maybe there are people in the same boat as you and you could join some sort of club that has nothing especially to do with dating?

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