I couldn't help but start a thread after I read Joan's blog today. I don't want to make this about me, but I just really identified with what happened to her. Doctors just have no idea that you might have other responsibilities besides being at their office. I had several things happen right along those lines. as some of you might know, I was quite ill recently. finally diagnosed as Lyme disease, but not before I wound up in the hospital. Funny, though, the doctors really tried to help. At one point I had an appt with my gyno (the regular yearly) and after she looked at my record for the most resent weeks, she became concerned, and called my internist for him to see me that day. I went up to the internist (same bldg) and of course had to wait, finally saw him, and he took me to the gastro guy, for whom I also had to wait. Finally, I went up to the receptionist, and told her, no way I could wait anylonger, my husband has alzheimers, and my 12 yr old granddaughter is home with him. at that point I had left my home at 2pm, and it was now after 5:30. My Grandie hd been alone with him for 3.5 hours, and it would take me 1/2 an hour to get home. i thought I had planned, thinking I'd be home in 1.5 hours. the other time, when I went to the ophthamologist with double vision, found myself at the neurologist, getting an mri, then a spinal tap and winding up in the hospital. thinking I'd be gone a short time. Thank God for friends who I called on to go over to the house and sit with him. Then DIL went over with dinner and stayed til we knew I was staying at the hospital, and she packed him up and brought him home. We try so hard to plan for all contingincies, andthen life happens, and all we can think about is, he's alone, what can I do. I have to get back and take care of him. that's our life, and that's where our responsibility is, it's so difficult when the unexpected happens. Joan, I know where your mind was during that test. These people just don't understand that we have a '86' year old toddler home alone. or in the waiting room, or wherever we've had to leave them temporarily. it's such a weight on our shoulders.
I intend to give my doctor an earful about this, believe me. I never would have taken Sid with me if I had known how long the procedures were going to take. But no one in his office bothered to explain anything. That's what I was so furious about. All they had to do was explain what was going to be done, what was involved, and how long it was going to take, and I would have understood that Sid needed to stay home or I would have dropped him at his friend's house.
Luckily, Sid was calm, quiet, and cooperative. But it wasn't fair to him to leave him in the waiting room for 2 1/2 hours.
A question on the Oregon Center for Applied Science Survey asked if we often postponed health care appointments for ourselves due to our responsibilities caring for our spouses. HELLO! This is a perfect example of why we do. Same goes for the question that asked "IF IT WAS FREE, would you participate in a two hour seminar once a week." - IF they paid me, I still couldn't go for 2 hours plus travel time, every week. I just wish we had a handbook that would have (in one place) financial aid resources, mental health resources, care resources, and memory care facilities that have the best reputations. Looking up facilities and making appointments and going out - knowing that they are set up and waiting for us doesn't give ME the confidence I need.
There's no way you can plan for everything when dealing w/AD. We live in CA, we were on a trip to New Orleans. It was w/a tour group I knew well, I was confident it would be OK even tho DH had AD. NOT! I fell, had a concussion & was in the hospital for 2 days. In the emergency room I'm arguing that NO, I cannot be taken to another section for X-rays, can't leave my AD husband; NO, he cannot take a cab back to our hotel in a strange city all alone; NO, he has to stay w/me in my hospital room--on and on. It's just the nature of the beast.
We moved to Florida in July 2006. In September 2006, Sid had to have an emergency colonoscopy (turned out okay), and from then on, it has been one doctor after another after another after another; one apt., test, procedure, after another after another for 3 years. I have not had time to attend to my own health, and now I have so many body parts that need attention, it will take another 3 years to get me squared away. I started with the heart stuff, which I thought was #1 on the list. Which, as you see from the blog, did not go as planned.
The good part about our move is that if I need a heart procedure or knee surgery, the Independent Living Villas have a van that will take me back and forth to the hosptial.
NancyB, the adult day care center my wife goes to also has a "Caregiver Resource Center" with information on all the areas you mentioned. This is apparently a new concept that they hope will be copied all over the country.
When I had to go in the hospital last week I was fortunate in having my 2 daughters here - one to take care of my wife, the other to go with me. They have now both returned to their homes, so I don't know what would happen if I have another spell.
After reading of Joan's experience I am of the opinion it is up to us to ASK very detailed questions as to upcoming appointments whether for ourselves or our spice, whether for medical or other business reasons so that we can make any arrangements required. Just one more thing for which the caregiver is responsible. arrrragggghhhhh
Weejun, I agree with you. Unfortunately, as in my case, stuff happens, unexpectedly, and the best laid plans of mice and men..... you know the rest. It's tough and it's a big responsibility to always have to think about soneone else.