It's not that we didn't appreciate the help. The aide came in days I did my bathroom routine. It's a lot of transferring, bending over and getting wet for the caregiver. It can also get messy sometimes. Dana really did give it a go, but it was an extra two hours of hard work on top of the rest of her day. The whole bathroom routine itself wasn't good for our intimacy. It really was too much. We both bit the bullet, but there were many frustrating mornings we were both emotionally spent after the ordeal.
I was in college when I first signed up for assistance. I received a check for supplemental security income (SSI), food stamps, and home health care. Signing up for assistance was humiliating. It went against my grain. But friends and family talked me into it. they said, "That's what it's for." Over the years I've been on and off of government assistance. When I moved to Texas, I applied for social security disability and have been on disability since. Most recently, we applied for Medicaid benefits for home health care. It has been a source of relief and frustration. Being disabled puts us at a disadvantage from the start.
That's why I really do appreciate a safety net being there.
Between the regular visits and our respite hours that we use when Dana's out of town reliable home health care has been a blessing. Dana has written about the difficult transition to having somebody else in our -- her-- house before. And I still think she does the job better than anybody else. But it has been a great relief to have the help.
There is a drawback to welfare programs: dependence. Just being disabled doesn't qualify us. There are income requirements too. Unfortunately those are often ambiguous and left up to somebody in some office determining whether we are qualified. My website work wasn't bringing in a lot of income, so I wasn't in danger of losing the benefit. My new career brings higher income potential. It puts us at a crossroads. We will have to pay about $60 for health care. That's a hit no matter what you're earning. Everyone on welfare programs faces this threshold. The risk of losing the benefit and security of reliable services holds us back from taking the big leap. It breeds contentment and contempt. Recipients grow content with the safe place. Others --and even conscientious recipients-- build contempt as they sit on the dole.
We have both struggled with this part of disability life. Admitting I need help. Admitting we need help. Actually accepting the help. Paying for the help. Qualifying for assistance to pay for the help. Transitioning back to self-sufficiency. The whole thing is a whirlwind. It's a hidden burden of disability.
15 comments:
Great thoughts, Mike. Very insightful. I just read this to my husband too and he said the same thing. Thanks for sharing.
You guys are not alone in this. We make too much money, so we have to pay medicaid $547 a month for a spend down. Also, he REALLY wants to get back to work, but if he did, medicaid would take everything he makes. We are stuck, but we need the medicaid.....
Great article Michael! And Dana thank you for the words you spoke to me on my blog. I think God was speaking through you to me and it was just what I needed to hear.
When I first became paralyzed there was no way I would rely on the government to take care of me. I went to college, got a teaching degree and then taught 6th grade until I had my first child. Now, I receive a disability check and it is such a blessing to our family because it allows me to stay at home with our children, which I love doing! I don't feel guilty because I know that older people and those with TRUE disabilities need a little more help than those who are just lazy and depend on the government. I had to go on Medicare because when I went off my parent's policy, no insurance company would touch me! Why don't you use Medicare instead of Medicaid? Just curious. :)
Your situation is why Medicare and Medicaid was started. Well, at least it should be the reason. I would be very disappointed if you did not use a service that I am proud is funded by our taxes.
Right there with you. So many on the dole that shouldn't be. And ppl like you deserve to be. The share isn't set up to analyze situations appropriately. For instance, Matt and can't even be legally married bc he would lose his benefits. That hurts. Unless he makes the 54k EXTRA on top of an income to pay for all he stuff he needs NOT covered by insurance, he can't even begin to think about working full time.
Um, 'share' should have been 'system'. Autocorrect always butts in:)
Thankyou for sharing your thoughts on such a personal topic, my husband whom is paralyzed told me that giving in and recieving help was one thing that was so hard to do also. He had always had a job, and worked very hard, and then after his accident had to apply for disabiltiy. He had homecare for a short while until he was strong enough to do his personal care, and bowel program on his own, but was very fortunate to have had good insurance at the time of his accident that was liable for all care expenses. He was a bachelor for 10 years before we married, so it was a complete change, letting someone else into his life to help with personal care. I quit my fulltime job to be home more to help, although, he does most everything himself, but, I too like your wife, worried so much when i would leave for work,and tell him to call my cell if any problems. But, now I work parttime, we've made sacrificies in material things to get by on such limited income,but my time with him is worth more than all the money in the world!!
Jamie, what Michael needs help with is his bowel program, and shower. That's "activities of daily living," so it's not done by an actual nurse. If he needed actual nursing care, Medicare (and our private insurance) would pay for it, but neither will pay for custodial care, unless you have Long Term Insurance. And of course, there's no qualifying for that as a quadriplegic!
Long Term *Care* Insurance.
It is a crazy system and it's certainly not easy. :(
Thank you for sharing this, even tho it is difficult, your insight is valuable. I really believe in a safety net and I am sorry that the good people like you, who need it, often feel bad. It would be better if the system did not discourage you from making more money by taking away the needed benefits. It is kind of a catch-22. Even that one with the marriage -- it seems the system discourages marriage, which should be a good thing.
Altho we have not had health issues, my husband lost his business income, and being self employed we did not have unemployment to fall back on. Essentially we have used all our savings, and we are 58, with a 17 year old still at home. I make very little money, as a freelance nutrition writer. I don't talk about it, but we have been on our church's welfare system for 6 months now. (Im Mormon and we have a large welfare program) Even tho I know that it is there for us, I still feel bad and want to be able to take care of ourselves. Yet, I thank God for this experience because I understand so much more of how difficult it can be when you are struggling every day to just have your essentials. Learning compassion is good, and sometimes there is no other way, but by being in a bad situation yourself. Thankfully, we are healthy and we have faith that work will come through soon. Life is truly a sacrifice and your wife is an extraordinary example of that.
We love you Aunt Joyce!
Thank you for sharing your story with us, Kelly! It definitely is a team effort!
Deila, thank you for sharing your story with us. I was actually just in Salt Lake City doing a story on the LDS church's welfare program, and I think it is amazing! I think the US government should look at that as a model, because it really encourages people to lift themselves up, and to give back, and there's so much value in that.
Don't feel bad. Your church is there to help you. That's the way it's supposed to work. We wish you and your family the best!
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