Wow. I now really understand why you shouldn't wait until you are desperate for help to arrange for respite or a nursing home admission. What I thought was just about the very last minute that I could possibly do this has turned out to be days--if not weeks--of research, phone calls, papers to fill out, a medical approval to go through, tours of facilities, a chest x-ray, packing more things than you would need for a world tour, etc.
After talking to the kind lady at the nursing home, she suggested that we schedule regular respite visits ahead of time, so she can plan for a bed to be available and I will know when the respite will be. (By the way, "respite" to me does not mean the six hours a week that DH's aide is here and I am frantically running errands or trying to clear off the desk and make phone calls. Respite to me is uninterrupted time when I can clear my head and think about what is coming next and how we will get through it. It's also time when if I'm tired, I can actually go to bed and sleep as long as I need to.) This first time we are planning for a week. She told me that since DH is on a medicaid waiver (changed to medicaid while he is in the nursing home), we are eligible for 30 days of respite each quarter. I didn't even know that. I thought the two choices were either for me to be a caregiver at home all the time, or permanently place DH in a nursing home. Having this respite available means that I now can depend on the fact that I never again have to get so tired that I don't even remember whole days at a time. I think it will make it easier to get through the days when I know that a break is coming at a scheduled time.
Even knowing how wonderful (and how necessary) the rest will be for me, it was still a horrible decision to have to make. And telling DH about the plans will not be one of my favorite memories, either. But I really think that if I didn't get this break, DH would be permanently in a nursing home within about two months, because of my own declining health. Finding out that there was another choice has been like a miracle for me.
Jan, you will find that it is essential to being a caregiver to have this respite. I have 5 days each month, and Friday is my third month of respite. I have been counting the days for a week!!! My husband does well there, and my grandson goes over to the Hospice Hospital at lunch and dinner to make certain everything is okay for him while I'm gone. We both get respite. The first night I felt GUILT, and each night it got better on the first visit, but the second visit was one of relief, and when I came back the second time, he had done so well, that I have no more guilt. This is necessary for those of us keeping our spice at home.
Jan, you are right about setting everything up ahead of time. It makes it easier on everyone.
Jan K--Your definition of respite in paragraph 2 is exactly right. Even a few hours when an aide is here or when my husband is in daycare isn't really respite. It is really just a chance for me to take care of my responsibilities. If I'm lucky, I can add in a workout or a lunch with a friend, but I'm still "on the clock".
Jan, oh boy do I understand, it took 6 long weeks, with DH in the hospital to find a nursing home bed. What they put you through should be a sin. Hang in there it does get a bit easier, never feels right in your heart, but in your head you know you are doing whats best for both of you. Arms around, Susan
Bama, if you figure out what respite is will you let me know? I do exactly like you describe, and besides the rushing, I feel stress knowing I have to "beat the clock".
gmaewok, My great lady who was coming twice a week is taking care of a month old baby so the mother can go back to work. I really do miss her but I understand. I tried taking DH to Walmart last week. I had him pushing the buggy and staying at the end of the aisle while I got what I needed. He was leaning too much forward and pushing which kept him off balanced. It was really too much for him so I wont try that again. So I decided to put him in daycare and would you believe they had closed the center. I know it has been in existence for over 12 years and was the only one in the area. I guess there is no rest for the weary. Resprite????????
Bama, while my husband holds on to the cart (uses it as a walker, really), I am in front of it - guiding it, stopping it when I need to and turning it to go down the next aisle. It works for me.
If left alone, he would just keep pushing in a straight line until he got to the end of the store and make a left or right turn, and keep going until he got to the end of the store, etc.
It's the only way I can take him to the grocery store. Walmarts is too big and tires him. I do that when I can go alone.
Mary, just don't PULL the cart. That is what I did that injured my right rotator cup. I would drag the cart and DH along with my arm extended behind me rather than guide and help push it. Now I never take DH shopping with me. We live.....we learn.