Two things happened, both involving hospitals. My DH had to have surgery. UCLA advised me to stay in his hospital room 24/7. Our son would spell me a few hours each day, but it was a horror & by the 3rd day, I could literally see the 'walls closing in,' actually moving--it was weird. This had never happened before. I had to get a private nurse to stay with him so I could get out. Later I learned the surgery was not really necessary, I was furious & I would never consider surgery for someone w/AD unless it was an immediate matter of life or death and, then, depending on the stage.
The other time I had an emergency appendectomy. Son stayed at home w/DH & I went to sister's after surgery because I could not depend on DH to leave me alone, he'd taken to nagging me about men, etc. & I needed peace & quiet to recover. During this time I realized that if something more serious hapened to me--what would happen to him. Son was married & had to work, who could I depend on? I had the time to check out care facilities & consulted w/son. We agreed on one & when the time came later, I already had a place. DH was getting violent and threatening, my children knew I was in danger--I didn't want to face it, but I had to.
I know I was lucky--if you can call it that, I had a son & elderly sister. Looking back, I probably could have found some agency or other to help, but I didn't realize that then. I know there's precious little for many caregivers, but if you can make some emergency plans in advance, at least have a couple of numbers to call, talk w/someone about possibilities--agencies, church, support groups, relatives, neighbors for a 'just=in=case' emergency, it's a good idea. Believe me, a ruptured appendix doesn't give you a lot of warning to look around. I can only hope that Joan finds another friend soon.
Two places all of us need to get in touch with is the local Area Agency on Aging and the Alzheimer's Association. When the caseworker came to see me she told me that although she would be "closing" my husband's file, the actual physical file, and the digital files (at least two of those) were going no where. The next time I called they would be able to get to them very quickly. So even if it isn't yet time to talk to them, talk to them.
The Alzheimer's Association also has a file on us, but that isn't as necessary. Still, that phone number needs to be close anyway.
joan, i think you are also witnessing the fact that as time progresses we begin to see even our closest and 'understanding' friends pull away. The rages and outbursts that happen on occasion are enough to scare people away. and you may not know how Sid does among his buddies. may be ok one minute and rant at them like he does you. they may just not want the liability of being around him. i think alot of us have this happen, even family doesnt want the added responsibilities. because you need income and are using speaking engagements to subsidize that, i do think while Sid is fairly functioning alone you must start a way to generate income that can replace the later times when you will not be able to leave him alone. and it may come sooner than thought. we all must think of how we will survive the future living with this disease -divvi
Well put divvi. I'd like to add that you are adding to your burden now by feeling guilty when you have to leave Sid alone for short periods, even though he can make it on his own. If he doesn't wander, etc., he can be at home by himself without someone there for now. Correct me if I'm wrong.
Kitty, not only does Joan have that problem, but I do as well. The fact that my husband can take 2 hour walks almost every day means that I also can leave him alone for 2 hours if I want to, but I almost never do.
Joan, Starling, and anyone else facing this dilemma. Now is the time to get your LOs started getting used to having someone besides you around when you need to be gone, or going to a daycare/Senior activity center(whatever). While they are still somewhat able to interact with others, getting them introduced to this will help you tremndously when you're further down the road. If you wait until then you may find it very difficult to get them to accept respite workers or day care situations. Our situation was such that the opportunity for help earlier on wasn't there, and now I'm very limited on who he will accept as a respite worker. He refuses Daycare at this time.
I confess, I've driven an hour-hour-and-a-half (beyond-Providence to Boston) to conferences and training classes, full days, for 2-3 days running, and in the last couple of years, in my early 70s. If you skip the after-dinner stuff, or even the dinner and after dinner stuff, unless you're speaking, and you drag along coffee and an apple first thing in the morning, you can do it. It's not great, but you can do it. Yes, it IS stressful. Filling the day, I don't know. Mine at that time still could amuse himself and eat the lunch I'd prepared. I agree that respite people are essential for me now, though I still say the main reason I'm getting them is to do housework!