Have you looked into a live-in caregiver? They are less expensive than hired care because you are giving room and board. Those who make a career of this are generally cut out for it and find out how to become part of the family without being intrusive. If you have the space in your home, it should be a consideration. This would remove a lot of the load, and make you well attended to in the bargain.
We looked into the type of care you are getting- it is about twice as expensive as direct hired help. For my wife, we personally use direct hire care givers that come ino our house. We have three of them, and we pay about $10 per hour. We need multiples so that they can deal with the scheduling conflicts (I travel a bit) and illnesses, etc. We have strict rules that they not come to the house if they are ill, because a cold for them could turn into a nightmare for a quad (my wife is c5/6). I have to do all the taxes, etc. but that is easier than the alternatives.
Look into it. It might be an answer- either direct hire, or live-in. Some people are just wired for this type of work, and when you find a good one, life just gets a lot better for all invovled. Yes, you give uyp some privacy, but there are trade offs you are now forced to make, and this might be one of them.
As for worries about the Trach, and other things, you can basically train anybody to do anything (just as your family learned). I have not yet found any restrictions on my hired care workers. You do NOT need skilled help- that is just more expensive. And as long as the family is there for backup if something happens, what is there to worry about. When my wife first came back home from the hospital, she had a trach, feeding tubes, and massive medications. In the seven years since, we have reduced meds to practically nothing, removed the trach, and she can swallow on her own- though she needs to be fed by hand. Looking back on those days, we're in great shape now. Just a hint- the trach caused more problems than it helped with. Sort of a Catch-22. She neede it because she kept getting crap in her throat. Once we reomved it, she got a lot less crap in her throat, and now we just quad-cough her, and even use a device valled a cough-a-lator.
As for hugging- I suggest you look into a standing chair. It's not exactly the same, but it's easier to get a hug standing up than sitting in a chair. Also- the standing is good for your system- helps with Bowels, bladder, respiratory, circulatory and all kinds of other physical things. Puts you back up at eye level also.
Lastly- if you have a rehab facility nearby, I suggest you look into FES biking. It does wonders for your respiratory and musculature. When unavoidable illness hits, you'll want to be as strong as you can be, and sitting in a wheelchair gets you little exercise. If you are not near a gym that has these facilities, I would suggest you tihink about moving near one. Some people actually get the devices in their homes via insurance. The best thing you can do to help your family is to help yourself. Christopher Reeves was a prolific FES rider.
Oh- one more hint for urinary tract infections- take two teaspoons of Cream of Tartar in water every day. I read it on the carecure website, and my wife has stayed UTI free since. Otherwise, your system builds up a tolerance to antibiotics, and eventually the bad stuff wins.
One step at a time, my friend. It sometimes feels like a crawl, but all this stuff will help keep you at home, and out of hospital beds. the healthier you stay, the less others have to endure with as caregivers. This is the voice of experience speaking.
Hope that helps
Steve
