Lu from Arizona
My husband Larry had a-fib which caused a stroke in May 2016. He was discharged in the middle of August 2016. We had a bought a fixer-up house 2 months before the stroke in the mountains of Arizona. He is right brain affected and one person needs to assist at all times. I have to help with transfers, help him to the bathroom and in the bathroom, transfer to bed and in and out of the wheelchair. Also in and out of the car. He is total wheelchair bound. I had to buy a car that he could transfer into and a lift for the power wheelchair. Medicine the first 6 months we were home cost over $7,200. He did not have any help with that. He is now on Medicare Part D. Even with that I am sure we have spent over $5000 in 2017 and the cost of Part D. We are not able to afford a part time caregiver or Respite Care so I can get away for a day or two. This is a 24/7 job. Arizona does not pay anything for spouses to care for their spouse. We do not qualify for many programs because we are right on the line. It is very difficult being a caregiver full time and not being able to leave the house except to run to the store for 20 minutes max. We did not ask for this. I have had to become the handyman, the yard worker, electrician, the plumber, roofer etc. Things that I used to have help with. But he is still alive, I am thankful for that.
If you find yourself suddenly becoming a caregiver, please join a group for caregivers even if it is online. You need as much support as you can get just to be able to care for your loved ones. Everyone says take care of yourself but that is impossible when you can't afford help.