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I have been taking care of my 41 year old son with William's syndrome since birth. My husband was diagnosed with Frontal Temporal Dementia 2 years ago. He is 71 and I am 61. Williams Syndrome is a developmental disability that has varying degrees of mental disability. My son also has type 2 diabetes. Now he has developed worsening depression, but has had an assessment and will be starting therapy soon. Husband's dementia is progressing. I am having a hard time dealing with both of their needs.

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I have an adopted son with Down Syndrome and my mom has Alzheimer's. Pleases start looking for a group home (HCBS waiver home) for your son. Do it because you love him.
Moving my son into a group home was very hard, but he loves it there, keeps busy with activities, and attend a program called Project Search. The other moms and I are very involved in making sure that staff follow our expectations as far as eating healthy, getting out and about and being dressed appropriately, etc. He is learning skills to be as independent as possible so that when I am not here, he will have a safe, happy, productive life. I am still his guardian and have full control over his finances, doctor, programs, etc.
The company who runs my son's group home also has a program called Host Homes for clients who haven't done will in a group home setting. In a host home, your son would live with a couple you would choose and you would still be his guardian. If your son has a case manager and is on Medicaid, that person will help you find a home with housemates who will be a good match for your son. If he doesn't have a case manager, you need to get one.
Please let me know if there is anything else I can do to help you get services for your son. Please, please, get him settled in a place where he can be happy and independent.
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Although it is cumbersome initially to deal with agency stuff, please contact your area Offices of Aging and Developmental Disabilities.There may be options for both your son and husband that will assist you by providing respite options for you...Monica
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I'm so glad things are getting better for you, phiz; but, I still strongly recommend that you look into optional housing for your son. There will come a day when you won't be able to take care of your both your son and your husband and it will be so much better for him to be settled into his own place when you are no longer able to care for him.

Please don't think I'm being harsh....It's just that II had a second cousin with visual impairment and probably a mild mental impairment who stayed with his mom and dad on their farm and then moved with them to assisted living. In those days, the educational opportunities and work program were not available for people with disabilities. He never held a job outside of working on the farm with his dad. His dad died of a heart attack and his mom died suddenly about a year later. My cousin had never been taught to fend for himself and was so lost....he died about 6 months later, probably from a broken heart.

As a mom with a disabled son, I need to know that he is as independent as possible and in a place where he is happy and safe. Believe me, the moms of all three guys in his house keep an eagle eye on what is going on over there! My younger brother will be his guardian and then one of my older nephews will be his guardian when I cannot. I have a special needs trust that will be funded by my life insurance. Here in Iowa it is called a Miller's trust and the state will not be able to recover any funds from it if I were to need Medicaid.

God bless you and Big Big Hugs to you!
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Is it possible his depression could actually be lifted by being in a more involved setting? I can't imagine you are able to do much beyond providing helpful, physical care and are probably running yourself ragged... If he is somewhere he can possibly make friends, or find activities that enrich his life, he might be happier than you realize. (That probably has its own issues for a committed Mom, but you know you've done the best you can!) The bottom line is that you might be just trying to hold everything together under an incredibly stressful situation,, but not able to provide a nurturing and "happy" environment in the process. (Please don't that that wrong either! You are doing wonderfully to even be lucid yourself at this point!) Good luck and a lot of people here are pulling for you!
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Good for you and your son. I'm glad he is getting back on track! I hope you can find a home that is a good match for him because it would be much better for him to get settled in now that to wait until the time comes where he has to move, but at least if he's getting out and about he is making connections. I haven't heard of any short-term placement programs, but that doesn't mean there aren't any.
As far as your husband, I'm glad he enjoys the Club and hope you can find assistance through the Area on Aging for more help. Hugs to you!
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Wow. Please take some time out for yourself. My wife is in end stages of FTD and that's a handful. I would schedule time for yourself everyday. My "time off" is going to work/job. If you can, get a full-time aide.
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I'm so sorry for what you're going through. I have a disable son - 22 yrs old, and I'm looking after my mom who is 89 in February - with dementia. Mom is a handful but is living in a NH. This is hard enough / I can't even imagine what you must be going through! Please try to take care of yourself!
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So sorry to hear that you have so much on your plate. If you do not have the resources to hire outside help here are some suggestions:

Look into a volunteer agency in your area to find help with daily tasks that you can delegate. You might call a local church and they may know of such resources. This might provide free time that you could devote to your loved ones.
Contact your local Department of Health an Human Services to find out what might be available in the way of help.

The Alzheimer's Association has 24/7 counselors to help you work through what to do to lighten your load. They are wonderful and very knowledgeable.

Finally, try to obtain JOhn Gibbs annd Judy Piggot's book,
PERSONAL SAFETY NETS (my capitalization).
The book explains how to create your own safety net by engaging friends and family to step up to the plate and volunteer any increment of time they may have to provide all kinds of help. You would be surprised how helpful this is.
The book also has a workbook that helps you work through how to create a network of help at the volunteer's discretion.

You may be able to cobble together something that could truly change your situation. Don't be too afraid to ask. Many people are willing to help but just haven't been asked.

Good luck!
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You will not be able to balance it all. Just accept that reality. I know you have built an entire life around being a caregiver to your son, but the time has come to allow changes to happen.

Klamath County has a services division you need to contact: 541 885-2435 http://www.klamathcounty.org/depts/dd/

Also contact SPOKES Unlimited - 541-883-7547 and spokesunlimited dot org.

Get your son squared away so you can make a plan for your husband's progression into advanced dementia. That alone will be a full time job and then some.
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Thank you stevensmom. I agree with you and you don't sound harsh at all. I'm really grateful for your suggestions and it makes perfect sense. As far as my son and his depression I think we need to get that under control first. Or do you think maybe getting into a group home setting would be best now ? Next appointment with his counselor we will be discussing a plan for the year. Maybe this could be part of the discussion. Thanks again stevensmom for your support !
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