Today marks one week since my husband has been at a memory care facility. I have come to the realization, at the insistence of my children (all of whom have spoken with me privately about the matter), that though I was viewing this placement as temporary, it's "time." I had researched the facility, visited the facility, he had even stayed at the facility for a week previously and done well. Well, well enough. But what a rocky start!
While I am aware that these things are never easy, I didn't have any appreciation for the potential difficulties, pitfalls, and emotions that could and would meld into a perfect storm. The complete reversal of a finally "normal" sleep pattern that I'd been working so hard to help him accomplish. The resultant behavioral issues leading to what looked to me like standoffishness and apparent rejection of my beloved by the staff. The communication breakdowns. The anger and disappointment I felt after finally coming to a decision and still not getting a moment's peace or rest. The call from the administrator after only four days -- on a Friday -- that the placement would not work and that a different placement would need to be worked out was a bitter disappointment and stressor.
Though I had been advised to stay away for the first few days of placement, I was now asked in a panic to come immediately to help calm my husband down. When I arrived, he was asleep in a chair. It was strongly suggested that I spend as much time there as possible, especially during sundowning. The following day, he was a zombie from lack of sleep or inappropriately administered medication (not enough? wrong time? too much?) or...who knows what? I was aware that he had no idea who I was. He knew my name, but he didn't know me. Thank goodness my son decided to stay by my side all weekend, because I'm not sure I would have been able to survive it emotionally while waiting for the hammer to drop on Monday. I wanted to just pack up my husband's things and bring him home, because the situation wasn't working for anybody. And I was sure I could do a better job of taking care of him myself. I was furious. And traumatized. Again.
Monday, I engaged an agency to help with searching for a "board and care" location closer to home. My daughter and I visited several homes. It's interesting the mix of things that are available for about the same price, which is all the more reason for taking one's time with these decisions. I told myself I wouldn't be the first person to have to place, replace, and place again until the "right" blend of location, care, and adjustment can be found. I had resigned myself to the idea, even.
And then I went to spend sundowning time, the most difficult part of the day, with my husband. I parked my car, said a quick prayer, and took a deep breath as I walked through the door. And there he was, sitting at the dining table, being his "usual" self! He was pleasant with other residents and eating his meal rather than sleeping in it. He wasn't agitated, angry, or aggressive. It was downright miraculous. He was having a good day. The staff was relaxed and smiling. The administrator called me into her office.
"He's having a good day!" I smiled. She smiled back.
"Yes, this might work," she offered, "Let's give it a try."
And just like that, the cloud hanging over my head lifted. For a while, anyway. Hopefully. If he continues to have relatively good days. It can take weeks for a person in my husband's condition to acclimate to a new living situation. I know that. She knows that. We all know that. We're going to give it a few more days. And we'll see what we'll see.
Showing posts with label respite. Show all posts
Showing posts with label respite. Show all posts
Wednesday, April 4, 2018
Monday, October 30, 2017
Be Sure to Take Care of Yourself
This is a very difficult post to write, but the fact that the subject comes up over and over again is maybe a hint to me that it's "time."
"Be sure to take care of yourself." "You're no good to him if you don't take care of yourself." "Who will take care of him if you don't take care of yourself?" But especially "Be sure to take care of yourself." I know you mean well, really I do. Maybe you can't think of anything else to say, and you're concerned about me. You see me running myself ragged, worried, exasperated, exhausted, and with a pasted smile on my face.
That smile appears every time someone says, "Be sure to take care of yourself." It protects me from saying, "Oh, shut up!"
"Why is that?" you ask.
I know you don't believe it, but I really am doing my very best to take care of myself. My spiritual self. My emotional self. My physical self. But it isn't as easy as you might think. I'm knocking on a lot of doors, hoping some will open.
Take, for instance, respite care. As I mentioned in a previous post, the Veteran's Administration generously offers two weeks of respite, twice a year. That is absolutely amazing, is it not? When I found out about it, I applied for my first two weeks. I can't even tell you how excited I was!
That was in May or June of last year. I got the call several months later, and my husband was all set for admission. The first week of December. Yep. Six months later. Six months during which his situation deteriorated further, his stage in the disease advanced, and his behavioral issues became more difficult to handle.
Almost as soon as I had dropped him off, I started getting phone calls. "How do you handle this behavior?" "How do you handle that behavior?" "What do you do when he does this? That?" Truly, it was a trying experience. I thought they were the experts, but apparently their expertise did not extend to my husband's stage of Alzheimer's. At any rate, four stress-and-phone-call-filled days later, more exhausted than I'd been when I dropped him off, I was asked to come get him. I was angry. I was disconsolate. There had been a ray of hope for me, and now it was gone.
Respite having gone so badly, it took me a couple of months to explore other options. Day care was suggested. I visited several places in various nearby cities and settled on one just about 20 minutes away. It would mean two round trips a day, each one including a bridge toll, but I was willing to give it a try. I applied in June of this year, and my husband was accepted pending a home visit by a social worker. I was hopeful. The young, attractive social worker arrived in August (yes, two months later), and my husband displayed (for the first time) a completely new behavior: outrageous flirtation. She seemed nonplussed, however, and said we would schedule the in-office assessments the following week. At this, I went from hopeful to expectant to ecstatic! But then she called later that afternoon and said my husband was not a candidate for the program, after all. Wouldn't you think a place that specializes in memory care and dementia would be prepared to handle the inappropriate behaviors that are, after all, part of the deal? Another door slammed in my face.
But lest you think I have given up, allow me to assure you that I continue to knock on doors. For instance, I recently learned of a live-in Alzheimer's facility in a nearby town that offers 24-hour respite care from three days to a whole month. I am in the process of investigating that. Surely, surely there is something out there besides placement. Though I am not walking through this with blinders on, thinking placement will never be an issue, surely there is an intermediate step. Something that will give me some much-needed time off without permanently altering our life together.
I am so grateful for friends and family who have stepped up and offered to help in various ways. Movie outings. Shopping afternoons. Trips to the dog park. Overnight visits. Each one of these breaks, even for an hour, enables me to "take care of myself." To read a book. To write a post. To take a walk. To...go to the bathroom by myself. Thank you so, so much.
"Be sure to take care of yourself." "You're no good to him if you don't take care of yourself." "Who will take care of him if you don't take care of yourself?" But especially "Be sure to take care of yourself." I know you mean well, really I do. Maybe you can't think of anything else to say, and you're concerned about me. You see me running myself ragged, worried, exasperated, exhausted, and with a pasted smile on my face.
That smile appears every time someone says, "Be sure to take care of yourself." It protects me from saying, "Oh, shut up!"
"Why is that?" you ask.
I know you don't believe it, but I really am doing my very best to take care of myself. My spiritual self. My emotional self. My physical self. But it isn't as easy as you might think. I'm knocking on a lot of doors, hoping some will open.
Take, for instance, respite care. As I mentioned in a previous post, the Veteran's Administration generously offers two weeks of respite, twice a year. That is absolutely amazing, is it not? When I found out about it, I applied for my first two weeks. I can't even tell you how excited I was!
That was in May or June of last year. I got the call several months later, and my husband was all set for admission. The first week of December. Yep. Six months later. Six months during which his situation deteriorated further, his stage in the disease advanced, and his behavioral issues became more difficult to handle.
Almost as soon as I had dropped him off, I started getting phone calls. "How do you handle this behavior?" "How do you handle that behavior?" "What do you do when he does this? That?" Truly, it was a trying experience. I thought they were the experts, but apparently their expertise did not extend to my husband's stage of Alzheimer's. At any rate, four stress-and-phone-call-filled days later, more exhausted than I'd been when I dropped him off, I was asked to come get him. I was angry. I was disconsolate. There had been a ray of hope for me, and now it was gone.
Respite having gone so badly, it took me a couple of months to explore other options. Day care was suggested. I visited several places in various nearby cities and settled on one just about 20 minutes away. It would mean two round trips a day, each one including a bridge toll, but I was willing to give it a try. I applied in June of this year, and my husband was accepted pending a home visit by a social worker. I was hopeful. The young, attractive social worker arrived in August (yes, two months later), and my husband displayed (for the first time) a completely new behavior: outrageous flirtation. She seemed nonplussed, however, and said we would schedule the in-office assessments the following week. At this, I went from hopeful to expectant to ecstatic! But then she called later that afternoon and said my husband was not a candidate for the program, after all. Wouldn't you think a place that specializes in memory care and dementia would be prepared to handle the inappropriate behaviors that are, after all, part of the deal? Another door slammed in my face.
But lest you think I have given up, allow me to assure you that I continue to knock on doors. For instance, I recently learned of a live-in Alzheimer's facility in a nearby town that offers 24-hour respite care from three days to a whole month. I am in the process of investigating that. Surely, surely there is something out there besides placement. Though I am not walking through this with blinders on, thinking placement will never be an issue, surely there is an intermediate step. Something that will give me some much-needed time off without permanently altering our life together.
I am so grateful for friends and family who have stepped up and offered to help in various ways. Movie outings. Shopping afternoons. Trips to the dog park. Overnight visits. Each one of these breaks, even for an hour, enables me to "take care of myself." To read a book. To write a post. To take a walk. To...go to the bathroom by myself. Thank you so, so much.
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