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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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Elsie Mae- I've been so ridiculously busy and I'm sure you have been too given we both have such similar situations. How are you doing? I'd love to hear from you. By the way is your middle name Mae? If it is would you believe that is my middle name too !
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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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Hi everyone-it's early but now's my chance to catch up. My son is improving with the help of a very good therapist. (Depression) This Thursday we have appointment with Vocational Rehab to get him back on track with a job. He's worked part time since he was 18. He's will be 42 this Monday! We moved about 7months ago and the therapist explained that initially my son was in a "honeymoon" phase. All was well. Then being out of his routine and familiar surroundings and supports came depression and anxiety. So we need to 're-establish the routine and supports. I thought I need to get him well first-then pursue a job for him but therapist said a job would be a great way to get a routine going. He will meet and developers new friends and get his sense of accomplishment back. (My son always was so proud of his paycheck). At our appointments ,the therapist has taken us out and about. We've gone to the skateboard park, ( my son loves skateboarding ) , to an Art museum that has a program for people with disabilities and Monday, my son's birthday we are going out for a pizza lunch and to Dutch Bros with his therapist. Since we've been working with the therapist my son has gone from being in his room all day to wanting to go places again. He's not back to himself totally but making progress. I feel guilty because we moved to be closer to my other son. I knew I would need someone to help with my husband. Now for my husband. He started a daycare program "The Club". He loves it. We can't afford for him to go every day so he getspouty. Sigh.... His moods are my biggest problem. Not violent at all just very child like. He's fine being away from me when he's at the Club but I've had to miss a couple of important appointments because of his "tantrums". I'm calling the Area on Aging Monday to see what possibilities are available to help with him. As my son progresses I've thought maybe it would be a good idea to find out if there is a program or possibility of a short term but consistent home where he could get integrated into the idea of a group home situation. I will discuss this with his caseworker and therapist. Would love to hear back from all of you!!!
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Hi to all of you wonderful ladies! Been busy-explain it all soon. Happy to meet you Elsie Mae ,Concerned5 . Stevensmom and Imageimp hello to you!! Going to pick husband up at daycare. Can't wait to talk to all of you.
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I can hardly believe that I have found someone here, on this site, with a problem similar to my own. I have been taking care of my 49 year old son all of his life. He was born brain injured leaving him both mentally and physically challenged. He's neurologically impaired and he is in a wheelchair. More recently, he was diagnosed with stage 4 colon cancer, had surgery 3 weeks ago and will begin Chemo Therapy in another week. They also found an aneurysm very close to his heart. I am so frightened for his future. He doesn't seem fully aware of all that is happening to him. He had a girlfriend who recently died during a seizure with a heart attack leaving my son extremely depressed. In the meantime, my 75 year old husband was diagnosed with Alzheimer's Dementia about 2 years ago and I have been watching him descend into Alzheimer's Hell. He is getting just a little more confused every week now. His symptoms seem to have speeded up just in the past month or so. He is now seeing and hearing people in the house that do not exist. I cannot get him to take the Aracet that was prescribed for him and I cannot make him go back to see his doctor. I can't get him to eat nutritious foods. He lives pretty much on anything that is sweet. His urine smells horrible. I don't know how much longer I can stay strong enough to take care of the two of them. Honestly, I wish the ground would just open up and swallow me up. I'm going tomorrow to have my doctor look at a weird growth that has come up on my mouth.
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I am also the parent of a developmentally disabled son, age 25. He moved into an adult foster care home two years ago and is doing well. He is now friends with the other disabled men living in the foster care home. They go to movies, to the library, out in the community and are well cared for. The owner of the home truly cares about the clients.

My parents live across the country and Dad, who is 97, has dementia. After years of caring for our disabled son I now find myself involved in finding support for my parents. I am encouraging my Mom to get night time help every night as well as time during the week to get away to run errands or do something fun with a friend. You have to take care of yourself or your own health will suffer. You count too!!
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Hi, phizphiz, sorry I didn't reply earlier; somehow I missed seeing this discussion pop back up. I would certainly start looking for the right setting for your son now, so you don't feel you have to take the first available spot. You'll want to meet the families of the other clients and make sure everyone gets along. Meanwhile, does your son receive anything along the lines of Supported Community Living (where a staff comes to your house and works with your son or takes him out in the community to whichever activities you and your son want)? As he meets more people with disabilities and you meet their families, you will find each more support and meet people who know about certain activities or places to go. I do think getting your son involved will be good for both you and him. Please keep in touch!
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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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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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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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To all of you who have given me suggestions, ideas and hugs-a BIG THANK YOu. I am now sitting in the waiting room for my son's 3rd appointment with his counselor. Things are slowly improving and we're moving forward. Husband had first day at the Club-adult daycare. That went very well. He'll go one day a week. Oops got to go.
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To directly answer your question....not currently but had a past life. Wanna chat? Its not impossible but incredibly difficult and well, yeah. Amazing the free advice.....did you have a specific question
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I have my Mother 95 in Feb and my husband 73. Both have dementia. Mother's is age related and my husband was diagnosed 2013 from 2 brain injuries. It is getting worse everyday. I don't know how long I will be able to do this even with respite and bath assist I have a rough way to go. My Mother is going through a grouchy stage now, it's not like her. I husband is declining into dementia and I hate it. He is accepting eh has it now and doesn't know what to do to help me. He is really trying, it's amazing but he is losing control over his bladder and his mind finding words. He also was diagnosed with diabetes and takes 4 shots a day and 2 metformin pills per day. One day at a time!
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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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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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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 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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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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