Quote from mustlovepoodles
Hmmmm, I get what you're saying here but I have a different perspective. Obviously, I don't know this family and maybe they are just a bunch of lazy warts. Maybe not. Sometimes a situation isn't all it seems to be.
I have a 17yo son who is severely mentally disabled.My DH is also severely disabled with heart/lung disease. We took total care of DS for the first 14 years until we were awarded funding for a part-time CNA, a few hours a day 5 days a week. I cannot tell you what a relief it was to have someone else take over some of the load. DS operates at about a 6-18mo old level, so he needs full assistance with everything. He's also a "runner", so keeping him safe was a HUGE part of our day and night. Having our nurse here meant that i could continue to work during the day and have some down time with my DH in the evening while his CNA took over for me for several hours.
By the time DS was 15, he was as tall as me and strong as any ordinary teen boy. Unfortunately, that was also about the time that I suffered a serious nervous breakdown partly due to the enormous pressures at home. I was hospitalized at one point and it took me nearly a year to get back on my feet again. It was clear to us all that DH & I were not going to be able to take care of DS much longer. We started working actively on finding DS a permanent place outside our home. In the meantime, DS suffered 3 significant falls resulting in fractures, one a hip fracture, due to difficulties monitoring him 24hrs a day. The state granted us more CNA hours but it still wasn't enough.
DH and I were utterly exhausted with the constancy of the supervision, not just the physical aspects of the daily care. If you haven't walked the walk, you really can't understand how it drains you to be on call 24hrs a day for years and years on end. Even with CNAs helping with the heavy lifting, we were still so worn out with DS that it was hard to manage on those weekends or holidays when they had the evening off. Although we had CNAs to help us take care of DS, sometimes we just wanted to be able to go away for the weekend or just have a romantic night at home without the eyes of our paid caregivers on us. '
In July, we received final approval for DS to be moved to a group home. A lot of people have commented to us that we must be so sad to "give our child away." Not exactly. The new caregivers are fabulous. They're younger and stronger and there are more of them, too. I think it's very easy to pass judgement on parents. Sometimes parents are just not good parents. Some are lazy. Some suffer physical and mental illnesses. And some have just given up entirely due to the sheer weight of responsibility.
DS is thriving in his new home and we are thriving again in ours. Now, when we go visit him we get to just be his parents. We get to enjoy our time with him because we aren't having to be in charge all the time. Looking back on it, I don't know how we did it for 17 years. Well, 14 years by ourselves and 3 years with CNAs. I know that some people have passed judgement on us and found us lacking. But I never saw any of them lining up to take our place to give us a few days respite.
I think nurses have to walk a fine line when judging the parents of their little charges
You have summed up my thoughts exactly!! Some parents are just scared when it comes to taking care of a special needs child. I was scared to death at first, but with awesome nurses teaching me and helping me I got through it.
There is nothing wrong with placing your child in a group home or ltc for special needs kids. That is what we are here for. I have walked in these parents shoes, so I am very aware of their feelings. I tell parents it is ok to ask for help. That doesn't make you less of a parent. Some parents do not have family to help them.
I kept my son at home for years. I was eternally grateful for the nurses that helped us. At one point, when my daughter was born, we made the decision to place him in the ltc that I now work at. (this was over 20 years ago). I know the guilt and anguish parents face when they have to make a decision like this. I didn't have family who was willing to help me at all. My parents lived cross country, and my inlaws were frightened of the thought of hurting my son.
The person who criticized me the most, was my mil. She never once offered to help with our son, or even come over to learn to help take care of him. In fact, she only held him a handful times in his life.
Point is, there are good ones and not so good ones. You need to make a decision. Yes, there are parents who take advantage of the help they receive. There are some parents who are just over whelmed with the prospect of taking care of a special needs child. Parents need a break sometimes. It is both mentally and physically exhausting at times. Add to the mix "normal" children and it can get more stressfull. I have seen cases of where the healthly sibling ends up resenting the special needs child due to the amount of attention they need.
I wish you good luck in whatever path you choose.