These things have been needed for a few months (or more!):
1. new wheelchair
2. new and better patient lift
3. ways to handle increasing incontinence laundry, etc.
4. getting more help in general
5. handling rashes due to incontinence
6. managing meds--over 10 per day
7. decrease in overall body strength
8. driving to and from doctors, dentists, OT,PT, calf botox shots, haircuts, special clothing, dermatologist, and discussions with anyone who might have a grain of help for me.
9. finally, found someone who understands ALL OF THIS and for free tells me the best way to do things! I am so very grateful for her. Prayers were definitely answered! Friends who are well-meaning but having no more knowledge than I do can zap my energy quickly. I know what he needs. The problem is getting those things. The HOW? was always missing!
Believe me, getting all this done is very, very time consuming for the caregiver--me!
And if you are caring for someone, you are well aware of the physical and emotional drain and the feelings of helplessness. Unlimited money would certainly help the situation.
Finally, we are making some visible progress. Having DH turn 65 has made a difference in the amount of help we can get for him. Medicare will now do more than before. Stroke was in 2006!
The agency for aides that I use presently for 6 mornings a week has no connection with Medicare or any way to handle the medical needs. The daily care is excellent and very flexible.But we need more than that.
A aide from a larger agency was added one evening a week. More than that breaks the budget.
A new patient cost me $750 but it has made life much easier. New that would be $6000! I was on a waiting list for over 2 years for the used one. Medicare won't pay for an electric lift!
A nurse was here for over 2 hours assessing our needs. She says we can now get more help.
A nurse will visit twice a week for several weeks and then once a week till the medical issues are sorted out.
PT/OT will be at home --yeah--I won't have to drive hubby anywhere! The rule is if this nurse comes here, then PT/OT can't be out of the home. Seems to me this should be decided on the needs of the patient! But who am I to say! Out patient OT/PT has more equipment than in the home.
The wheelchair is ordered (3rd time!) because of problems with Medicare.
Rails are ordered for the hospital bed. Hope Medicare accepts this order! to check his back area, he needs to roll over in a very narrow hospital bed--and he can't roll both ways due to paralysis. So, rails are badly needed.
Seven years ago I had no idea what to ask for or how to get things. Lots of mistakes and delays (for years) happened! No, we had no social worker to coordinate things. He was not considered sick by Medicare disability insurance. So, magically before age 65 all the home care was supposed to happen-- with the caregiver figuring it all out!
I am feeling better. Now, dealing with new aides and new nurses, and a new social worker isn't a breeze, but I don't feel so alone now!