My 44 year old autistic brother is going into a nursing home

[Skittles]

he was hospitalized for pneumonia, then went into heart failure; he's stabilized now but my mum called very upset saying social workers said should go from the hospital to a nursing home. He is autistic, diabetic and grossly overweight; I think it is a good idea because she will be 75 next month and cannot take proper care of him. She is very upset and keeps saying nursing homes are for old people and I know it doesn't help that another brother passed away a year ago. Anyone who knows anything I can tell her to make her feel better about it, please let me know......thanks.

[REP]

1. It Does Seem Like a Move For The Better

I remember you tellin what happened to your mom not to long ago, and considering your brother's needs, this is probably a good thing for both of them.

I don't know what would make your mom feel better, other than pointing out that nursing homes aren't for old people; they're for people who need have special medical needs, and that if he needs any help, someone will always be there and know what to do for hm there. I suspect she'll miss him; will she be able to visit him easily? Making those arrangements, if necessary, might make her feel better.

[Skittles]

2. yes, she can visit him

I told her to get me his address and I'll send him a card or postcard every week

[REP]

4. I Meant, Are There Transportation Issues

I didn't assume they'd lock her out or anything.

[NMMNG]

3. I second what REP said

Right now a nursing home is the best environment for his needs. It is possible, if he becomes stable enough, that he may be able to move out of the nursing home into a care facility for people with developmental disabilities in the future. That would afford him more independence and give him the opportunity to learn new skills. Furthermore, the staff at such a facility, being better trained to work with individuals who have autism, would be more prepared to address his particular needs than the nursing home.

[jmm]

14. I agree

Right now because of his health he needs to be in an environment such as a nursing home where his health can be closely monitored. Hopefully his health can stabilize to a point where he can move onto a facility that can better address his autism.

Sometimes the most loving thing a parent can do is put allow others to help care for their child.

[Robeson]

5. I have no idea of what to tell you Skittles, but you and your family.....

...have my best thoughts. This must be very gut wrenching for everyone involved.

[NamVetsWeeLass]

6. Skittles, I am a Nurse....

You can try to explain to her that a Nursing Home will be his best bet for round the Clock supervision. I have several families that are in denial over the placement of their loved ones. "They don't need to be here" Mainly these types are the ones that have family members that are so blatently in need of medical care, too. I wish you all the best. If it's any comfort, I have have several younger people in nursing facilities, a few even younger than me!!! (I am 34) Good luck.

[Skittles]

11. she's a total denial case

she was kind of miffed I thought it was a good idea but I do

[0007]

7. The Humane Society would be better than any fucking nursing Home

I don't have an answer for ya. Money is the only thing that usally takes care of these kind of problems.

My father just died in a nursing home, he was 93. It cost over five thousand a month to keep him there. Dad was there for about 14 months until he quit eating. He was getting fair care, but he hated it. I'm glad his money didn't run out before he died.

[Swamp Rat]

8. abraço

:hug:

[hyphenate]

9. If it's a reputable nursing home

it should be fine. I would suggest that she visit him as often as she can, or other family members--it seems to be my recollection that patients with visitors are more alert, better taken care of.

My mom is likely going to face the same decision. My brother has been her ward since he was 17 and in a major car crash which resulted in severe brain damage. He's really not much trouble, but he can't walk and has the mental capacity of a 10 year old at best. He needs to be fed, washed, his bed cleaned every morning, and dressed, though he does help a little. He pretty much watches TV during his waking hours, and little else.

She might want to look into an assisted-living facility instead of a nursing home--he should have a patient advocate that your mom can contact and talk with. At the very least, the advocate can give her information on any facilities around, and reassure her.

[Skittles]

12. he really needs extreme medical care at this point

I think he is in very bad shape

[In_The_Wind]

10. Skittles, it sounds better for everyone.

[underpants]

13. Tell her that she has done enough already

SHE deserves a bit of a break now. He is going to be well taken care of now she should take care of herself.

I would say something like that.

[ismnotwasm]

15. I worked as a nurse in a nursing home for many years

It will always be my first love in nursing. You'll find staff and nursing taking care of the forgotten and the unwanted. You'll see some of the most selfless family members and staff in the world
In long-term care, we develop relationships with our residents, we get to know and love them. We know how they like their breakfast, and we know what to say when they are upset.

Nursing homes are the most regulated industry in the United States. There is ALWAYS a resource if ever a problem comes up with care. There are social workers, the state ombudsman, state surveyors who respond to complaints. Nursing homes are surveyed at least once a year.
The nursing home I worked at did the very best they could to meet the needs of our residents. Some of them made us want to tear out our hair, but when dealing with the chronically ill--say end-stage multiple sclerosis where someone is likely to be quite young, we understand these people have lost control of EVERYTHING. Some of their behaviors reflect that. (It's one of the reasons elderly with advanced dementia refused to take showers. It's one thing they feel they can control)
There were so many moments of joy and tears, Skittles, so many stories.. I took care of teachers, old soldiers, inventors,doctors, housewives, farmers, scientists (I'll never forget the man who told me how to make a makeshift telescope for my backyard--he lost me the first third of the conversation--fascinating man)We had residents with huntington's chorea, Parkinson's, stroke victims, cancer victims, and yes, autistic and developly delayed residents. Each made this beautiful tapestry of the human condition. I have never felt so honored in my life, to be able to care for these people. To be present at the death of an old war hero, to get to be the one to hold his hand while he took his last breaths. To coax a smile out of someone who never does.
I left to get some acute care experience. I work on a transplant unit now, and many of the skills I learned in long-term care help me walk these very, very ill people through their illness and surgery and sometimes long recovery.
Your family may find, that while a nursing home is the initial placement choice, an adult family home may be more appropriate down the road. He sounds ill enough so he will be going into a skilled nursing facility, it's more equivalent to a step-down unit in a hospital. Nursing homes are bound by law to find the least restrictive environment for their residents.
I'm sorry you're are going through this, and I wish you all the best in the world.

[lpbk2713]

16. Great post.

Thank you for being you.

[Skittles]

26. thanks ismnotwasm

a poignant post

[Blue Diadem]

17. Your Mom will have a hard time,

I'm not sure there is anything you can say to make her feel better but just keep reassuring her that this is best for your brother. It will probably be the most difficult thing in her life..to let go of taking care of her child.

My Mom devoted her life to caring for my sister and it took a lot to convince her to consent. Unfortunately, because my sister was also hospitalized and in bad shape, she took a turn for the worse and was in a PVS by the time she went into a nursing home. At that point, my Mom had no choice of which nursing home. They were able to find only one that took Downs patients on a ventilator.

You might want to find out about the nursing home. There may be a violation site on line with her state. Back when this happened with my sister..and a few years later with my Mom, I didn't have the ability to find out. All I had was what I could see at visitations or by word of mouth. Later, when things became available online, I found my Mom's nursing home had and continues to have many critical violations.

[Zomby Woof]

18. I don't know what to tell her

But my heart goes out to her, YOU, and your brother. You have been through too muich this past year or so. :hug:

[miss_american_pie]

19. She's a mom

There is nothing to say that will make it easy for her to turn over the care of her baby to strangers, no matter how caring, compassionate, and competent they are.

Just do your best to make sure she can visit as often as possible, and make sure she has things to do to fill the time she used to spend caring for your brother.

I'll keep your family in my thoughts.

[GreenPartyVoter]

20. I have known young kids who were in homes because they were

ablet o get better care there than from their family.

I hope your mother can stop taking this as a personal parenting failure (which may be the case and the "it's for old people" may just be her cover.) :hug:

[RandomKoolzip]

21. Sorry to hear that, Skittles.

:hug:

If you need someone to take over ASS-KICKING duty, just lemme know.

[astonamous]

22. That's a tough one, but if you have any choice as to which one

check them all out. Also, try not to referr to them as nursing homes. The name alone is enough to put people into a panic. Long term care is sometime the only option unless another member of the family can take care of him.

The most important thing of all is to make sure someone visits him every day. It doesn't always have to be the same person, and it should be at different times even during mealtime, recreation time and very early and late. This will keep the staff on their toes and if you see any problems you can get it taken care of while you are there.

[deek]

23. Please be sure to research the reports

put out by advocacy/obudsmen/family members. I've read so many horrendous reports of some of the institutions here in CA I'd rather sit on a train track than put my daughter in one.

[nini]

24. Tell her she'll be able to spend more quality time with him ...

when she's not the primary caretaker. She won't be as tired and can do more if she's not constantly having to be there for him.

He will be somewhere where he can be helped 24 hours a day. She can visit when she wants to do what she needs to do for him. This sounds like the best way for him to get as healthy as he can which will help her not lose another son.

Big hugs to you and your family - you've been through more of your share lately :hug:

[noonwitch]

25. Could he live in a group home if he lost some weight?

Maybe if the nursing home can get his weight and diabetes under control, he can move to a group home, which would be more family home-like.

Autism is so hard for families to deal with sometimes, but your mother is too old to physically care for him if he has all these health problems.

[SoCalDem]

27. My best friend's 55 year old brother has been in one for a few years now.

He does very will there, and the staff takes good care of him.. he was hit by a car and suffered some brain damage. He can speak a little, but can not take care of himself. He breathes with a tracheotomy tube, and is tube fed so caring for him at home was something she could not do, and she is caring for her other brother already (he was injured as a teenager, and has always required 'extra help").. She is truly her brothers' keeper..

Your brother will be fine, and having him there will probably prolong your mother's life too :hug:

[KamaAina]

28. How are home and community-based services down there?

In the disability rights movement, we believe that nursing homes and other institutional settings are bad for everyone, elderly as well as disabled. In this instance it is hard to imagine that the presumably overworked staff will have a clue how to deal with someone who has autism. It is all too easy to imagine him being medicated every time he tantrums. :scared:

He sounds like a prime candidate for what is called a "Medicaid home and community-based services (HCBS) waiver". The TX Council for Developmental Disabilities ought to be able to provide you with info on your waiver programs; 800-262-0334 or (in Austin) 437-5432.

http://www.txddc.state.tx.us/menus/fset_cncl_1.asp

Note: I am presently serving as the chair of the similar council out here. I had no idea you were an autism sibling. No wonder you kick so much, um, tail!

edit: if you do go the nursing home route, this handy-dandy tool from the Center on Medicare and Medicaid Services should help you weed out the really crappy ones:

http://www.medicare.gov/NHCompare/Home.asp?version=alternate&browser=IE%7C6%7CWinXP&language=English&defaultstatus=0&pagelist=Home&CookiesEnabledStatus=True

[KT2000]

29. From what I have seen

there are always younger people in nursing homes. They have had strokes, been in car accidents etc.

I think it will be OK for your brother. There will be a schedule for all his acitivities and visits from your mother will be one of them. He may even make some connections with other people there.

Nursing homes are not that bad - of course it is not something we look forward to but sometimes circumstances require it.

I would suggest that you tell your mother that your brother is just entering a new phase in his life. It is also good that he will be able to transition with her still able to visit him. It will take time for both of them to adjust but it is not all bad and she may even be suprised that he may have new experiences.

Best of luck to you - transitions can be difficult for all concerned.