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've been searching through the retirement forum for folks who are dealing with retirement with a child with special needs. While I'm happy that I found this thread it was very sad to read. I too am one of those folks, nearing retirement with a child with special needs living at home. I don't know how many years I can shower, feed, entertain, medicate and care for my son is now a young adult. He is taller than me and much, much stronger yet has the mind of a 1 or 2-year old.
Are there others besides NewToCA and me out there doing this? I'd love to start a thread on how you're doing it and how it's going. Are there any hints that you can give? Any advice?
There are thousands of people just like you and my wife and I across the country. I have come to the conclusion that as caregivers for the disabled we must accept the fact that our lives are for obvious reasons very different than what most people our age experience.
Everyone's situation is unique. Do you have access to programs in your area ? Do you have supportive friends and or family ? Have you connected with other adults in similar situations. Are respite opportunities available.
In our situation the answer to these questions is usually yes. We do however worry about the future when we can't physically ( or mentally ) take care of our son. For me personally being involved has been very rewarding and stress reducing. I hope this helps in some small way.
I am reading and taking to heart all of your comments. A family meeting is in the planning stage. The family will all be together in a couple weeks. I will at that time find out what all my other children are willing to committ to. I appreciate all of your advice and am open to any and all comments. Thanks!
My experience is that what the siblings commit to can change over time, as their own lives evolve (sometimes in unexpected ways).
If you do this, be prepared to have specific discussions at least once every year or so to ensure that what was previously agreed to is still viable.
This is going to be a huge problem in the future. Medical advances have worked wonders to keep people alive but haven't yet been able to CURE most. So many people will never be able to care for themselves at all once their family is gone, and many others will need some kind of assistance. I don't know what's going to happen but I suspect many new industries to crop up because of it. And it doesn't seem like the government is going to be in any position to help.
I have a 44 year old brother with.spina bifida and he lives with my parents. Dad now has cancer, mom jas psychological issues and can barely care for herself. I can't find ANY assisted living for him. Every place only takes 55 plus. I hav e no place for him that's accessible. I don't know what I'm going to do. he's depressed now, in and out of hospitals.
I have a 44 year old brother with.spina bifida and he lives with my parents. Dad now has cancer, mom jas psychological issues and can barely care for herself. I can't find ANY assisted living for him. Every place only takes 55 plus. I hav e no place for him that's accessible. I don't know what I'm going to do. he's depressed now, in and out of hospitals.
Are you in a rural area or a very small town? Perhaps you need to look in nearby cities. Even in my hometown (about 30,000 people) there are at least three large assisted living facilities that accept both people over 55 and adults with disabilities who are under 55. Call your counties commission on aging or agencies that work with the handicapped for help getting started. Good luck to you.
Are you in a rural area or a very small town? Perhaps you need to look in nearby cities. Even in my hometown (about 30,000 people) there are at least three large assisted living facilities that accept both people over 55 and adults with disabilities who are under 55. Call your counties commission on aging or agencies that work with the handicapped for help getting started. Good luck to you.
Thanks for the tip. I live in Denver, so a metro area of over 3 million. That's why I'm surprised to be having difficulty finding a place for him.
I have a 44 year old brother with.spina bifida and he lives with my parents. Dad now has cancer, mom jas psychological issues and can barely care for herself. I can't find ANY assisted living for him. Every place only takes 55 plus. I hav e no place for him that's accessible. I don't know what I'm going to do. he's depressed now, in and out of hospitals.
Quote:
Originally Posted by germaine2626
Are you in a rural area or a very small town? Perhaps you need to look in nearby cities. Even in my hometown (about 30,000 people) there are at least three large assisted living facilities that accept both people over 55 and adults with disabilities who are under 55. Call your counties commission on aging or agencies that work with the handicapped for help getting started. Good luck to you.
Quote:
Originally Posted by denverian
Thanks for the tip. I live in Denver, so a metro area of over 3 million. That's why I'm surprised to be having difficulty finding a place for him.
Rats! I just wrote a very lengthy post and my internet stopped and it was lost.
Instead of writing the whole thing again, I'll list a few places to contact and ask them for suggestions of where to look or who to contact.
Look & think "outside the box" and contact:
Medical Professionals: your brother's doctors, social worker dept. at major hospitals, visiting nurses association
Any public or private agency related to services for the handicapped
Social & Parent groups, advocacy groups for the handicapped
Denver Schools: Director of Special Education
If there are at least three large ALF, that accept disabled adults, in my small home town there must be dozens of places in a city like Denver you just have to find them.
Rats! I just wrote a very lengthy post and my internet stopped and it was lost.
Instead of writing the whole thing again, I'll list a few places to contact and ask them for suggestions of where to look or who to contact.
Look & think "outside the box" and contact:
Medical Professionals: your brother's doctors, social worker dept. at major hospitals, visiting nurses association
Any public or private agency related to services for the handicapped
Social & Parent groups, advocacy groups for the handicapped
Denver Schools: Director of Special Education
If there are at least three large ALF, that accept disabled adults, in my small home town there must be dozens of places in a city like Denver you just have to find them.
Good luck to you and your family.
Thank you for the suggestions. I did finally find a woman who has a business where she has group homes for younger disabled people. Each home has a F/T care taker and it sounds like it might be what I need, but she said it would be $2200 per month, which would leave him penniless after that. He gets SSDI and something like $1700 a month from the VA (his disability was connected to my father's exposure to Agent Orange), so I'm not sure what sort of benefits he can get to cover any of the cost. I'm going to keep looking in the meantime. These group homes are a half hour away from our house through a lot of traffic, so that would be very inconvenient and he wouldn't be able to see us at all during the week, due to our busy schedules. We have 5 year old twins and work full time. The closer he could be, the better.
I'm a 36 year-old mom to an 8-year old child with multiple developmental disabilities. It is heartbreaking and sometimes I'm getting burned out from having to deal with his seizures and increasing needs. I tried to shut myself out because I was so afraid of getting judgments from other people. I love my son so much that it breaks my heart every time I hear people talk about him and his condition. I've become so overly protective of him and at times, I just feel like breaking down because of the stress and frustration. I used to have a journal where I write all my thoughts and frustrations. Then later on, I opened my own private blog site where I can vent out all my negative feelings. It is only I who have access on it. There, I am free to write down everything and I can just be myself. I don't have to worry about people knowing who wrote the desperate blogs. Then, later on, just recently, I opened my own blog site which is no longer private - it's open for all. I guess it's my own way of liberating myself. I want to meet other moms who are having the same dilemma as me.
I can't even think of ways to ensure my son's future when my husband and I get old. I can't even entertain the possibility of me having another child. He is my first-born and my experience of motherhood had been so traumatic. I had to deal with my son's seizures which were hard to control, regular visits to the hospital, sleepless nights, the fear of losing him, different illnesses and complications, giving up my career and losing everything. Yes, I lost everything... money, time, everything that I am. Putting up the pieces is still a challenge up to now. Through my blog site, I can somehow share a little bit of my journey to others. I have decided to keep the private blog which keeps the thoughts that I want to keep as private. However, my new blog site is more liberating - it holds some positive vibes and somehow, it gives me hope.
Having a child with special needs is so difficult. I have a lot of limitations. I have a lot of fears and worries. I am always anxious about the days to come especially now that I'm getting old.
I'm a 36 year-old mom to an 8-year old child with multiple developmental disabilities. It is heartbreaking and sometimes I'm getting burned out from having to deal with his seizures and increasing needs. I tried to shut myself out because I was so afraid of getting judgments from other people. I love my son so much that it breaks my heart every time I hear people talk about him and his condition. I've become so overly protective of him and at times, I just feel like breaking down because of the stress and frustration. I used to have a journal where I write all my thoughts and frustrations. Then later on, I opened my own private blog site where I can vent out all my negative feelings. It is only I who have access on it. There, I am free to write down everything and I can just be myself. I don't have to worry about people knowing who wrote the desperate blogs. Then, later on, just recently, I opened my own blog site which is no longer private - it's open for all. I guess it's my own way of liberating myself. I want to meet other moms who are having the same dilemma as me.
I can't even think of ways to ensure my son's future when my husband and I get old. I can't even entertain the possibility of me having another child. He is my first-born and my experience of motherhood had been so traumatic. I had to deal with my son's seizures which were hard to control, regular visits to the hospital, sleepless nights, the fear of losing him, different illnesses and complications, giving up my career and losing everything. Yes, I lost everything... money, time, everything that I am. Putting up the pieces is still a challenge up to now. Through my blog site, I can somehow share a little bit of my journey to others. I have decided to keep the private blog which keeps the thoughts that I want to keep as private. However, my new blog site is more liberating - it holds some positive vibes and somehow, it gives me hope.
Having a child with special needs is so difficult. I have a lot of limitations. I have a lot of fears and worries. I am always anxious about the days to come especially now that I'm getting old.
I completely understand, having seen what my parents have gone though with my brother. And I have neighbors who are in thier late 60s, and have a severly handicapped son in his 30s. They had to finally put him into a care facility, but they still have him at their house every weekend.
All your worries and feelings are very valid. I'll most likely become the care-giver for my brother at some point (not sure when yet), but my parents have done nothing to set things up for my brother's care, like doing a will or trust. My mom is just to selfish to so such financial planning, but luckily my brother has his health care paid 100% through the V.A. His health isn't that great, so I'm not sure how long he'll live.
A blog sounds like a great way to get things out.
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Worried about the future of my disabled child
