Respite Care Dos and Donts?
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Anonymous
| I am an adult who is very close friends with a person who happens to have an intellectual disabitly. She may as well be like my slightly younger sister and my whole family loves her. Her parents often look to my family for some respite care. A weekend, day etc so they can have time for themselves. We are happy to help (although part of me dislikes having to be put in the position to "babysit" a friend) but sometimes I taken advantage of. I know they really crave this rare alone time but they push the boundaries and they know I have an infant. Any parents with special needs children of any age that can give me some advice on the dos and don'ts of respite care? Should I just allow them to have whatever time they want or is it ok to say if something isn't the best (even if it isn't the worst) for my family. |
Anonymous
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OP, there is respite care for families of both children and adults with SN for this exact reason. You are this woman's friend and I'm sure she and her family treasure that. You need to set some limits so that you and your family don't start to resent her position in your life, instead of seeing it as a positive. Talk to the family about respite care so that they can get the alone time that they need to recharge and make a concerted effort to change your thinking about this situation. Feeling as if you are being taken advantage of and that you should "allow them to have whatever time they want" is not a friendly relationship. This is a guilt/pity relationship. If it doesn't work for you, say so. Conversely, if there's a time that you'd like to see your friend, call them up.
If you happen to live in a MD county, here's a brochure to get you started. http://www.dhr.state.md.us/documents/Brochures/Adult-Services-Flyers/Respite-Care.pdf |
Anonymous
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Of course it's okay to say it's not a good time for you!
And does her family know you view this as respite care? Your post is really confusing. You look upon this person as a close friend/sister but you view time with her as providing respite care? Because she and her family may view this as friendship. OP, if you view this as respite care, ask for money. Make it clear you view your relationship with her as providing for her care, not as friendship. Don't blur the lines. Really, you are not doing a disabled person favors by telling her family she's your dear friend and sister and then resenting when they request a get together because it's a bad time for you and your infant and you can't/won't speak up. This is a recipe for disaster. This is why SN families get a bad rep -- because YOU won't decide in your mind what kind of relationship you want and YOU want some mythical friendship that is really about providing respite care. |
Anonymous
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Taking respite care of a special needs child (which you are asking tips for) is totally different from being close friends with an intellectually disabled adult.
I pay caregivers for my SN child approximately $15 to $20 per hour. I call and schedule caregivers for my child and, if they are unavailable, of course they tell me. I also file tax information for them. Friendships are totally different. Friends of my child come and go. I hope when she is an adult she is able to have independent friendships, but I can't imagine viewing such friendships as respite care. That is insulting to her. She would be entitled to respite care because she is disabled enough to mandate respite care, but mere intellectual disability does not mandate respite care. Many intellectually disabled people work, live independently, even marry and have children of their own. I guess this sounds huffy, but perhaps it's time to figure out what this woman means to you, really and truly. If you resent your time with her, it's really not fair to anyone. |
Anonymous
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Ignore mean PP.
It sounds like you are a friend to this person. Friends don't usually come for a weekend, and I didn't have many fiends over for a whole day when I had an infant. This family has other options than you (and your family) for some alone time. Take care of yourself first because you have a baby and need to be there for your young child. |
Anonymous
| Thank you for the tips. I apologize if I was confusing. I just feel my friends parents are muddying the waters. We became friends independently because we are so much alike and enjoy each others company. We text 24/7 and hang out often when either her or I call each other and ask. I can't tell you the last day was that we didn't speak. If it goes too many hours, I miss hearing from her. I look forward to when she finds time in her busy schedule to do a hang out! Periodically, and more increasingly, her parents will contact my husband (he has become friends with her too) or I to ask us to "watch" her so they can go away for the weekend, go out for their anniversary, go to a party etc. If we and, they find a day we an. I want to help, I love seeing my friend, but I like our friend relationship and don't want to change it into a caregiver one. Just not sure if I'm being selfish and should just help a lovely family or set boundaries. |
Anonymous
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OP - Your relationship with this young woman is what any parent of a disabled young adult daughter would hope for, and I can understand how the waters can become murky. You just need to sit down with maybe your friend's Mom and one-to-one remind her of how you and her daughter just became friends naturally and that you value this friendship when as you phrased it both of your schedules allow you to be free to get together. Furthermore, you also now have an infant who demands your close and main attention when not working etc. Thus, you would prefer to preserve the friendship with your friend and not take on extra hours of what you might say as setting up a first, firm boundary of overnight respite care. If there was a special event such as an anniversary or social event they would like to go to as a couple, they could certainly ask if you and your husband would be free to have your friend come over for a few hours. I would share that you, in fact, do not want to think of your time with XX as "respite care," but there are resources in the area for folks who could do that which the Mom may not have thought about. I would mention: Care.com which has a lot of college aged/young adults who will watch individuals with special needs. There is also a sitter list at American University. Somehow you need to share that you value dear daughter as a friend and do not want to establish a caregiver/client relationship. Correct me if I am wrong. I suspect this couple could use some time alone and just naturally have turned to you and DH without realizing just how much time they may be asking of you (with a new baby) nor how it might change a friendship. |
Anonymous
| I think the parents have misunderstood the relationship or they are underestimating their daughter. Why do they believe she cannot be in the house alone for an evening? |
Anonymous
Op here... Unfortunately due to a seizures she cannot be alone for long periods of time. |
Anonymous
This makes it so much more clear. Got it. I think you need to gently set boundaries with the parents. |