Last week, Mom finally decided, with our encouragement, to put Dad in respite care while we are on vacation. I did not tell her about the messages I got from friends strongly advocating this decision, nor about the conversations Mike and I had leading up the night she agreed that it would be the best thing for everyone. It happened more or less as I expected. Dad was fussy, restless, argumentative, and downright ornery all day, giving new meaning to the words "witching hour," by the time we got to the post dinner roundup. When she finally came downstairs after getting him into bed, she let out a gusty sigh and said, "I don't know what's going to happen, this can't go on," pacing in a circle, her body language clearing giving off the signs of exhausted agitation. If Mom were of my generation, she would've let loose with a, "OMG WTF!!!!!!!!"
That's when I urged her to really think about respite care. I pointed out how difficult he had become, and how this was going to multiplied on a road trip. How would we handle it, if he started making as much noise in the middle of the night in a hotel, or in the house of a relative? Was she really going to spend over an hour in a family bathroom, 3 times a day in a public space (because that's how long it takes for Dad to finish pooping)? Like at a zoo, a museum, at Niagara Falls? The entire trip would be so stressful for everyone that it would feel kind of pointless, and we all, kids included, needed a real vacation. She thought about it for 2 seconds, then said, "Okay fine, that's what we'll do." Then she spent the next hour processing that decision. I asked her if she was worried that he wouldn't be well taken care, or if she was feeling guilty for putting him somewhere so we could go on a trip. Because to me, those would be normal thoughts. But she said, "Oh no, I'm not worried about that and I don't feel guilty! The only thing that worries me is that he won't be able to stand it. Because he's so STUBBORN!" LOL. I told her he can't be the most stubborn person respite has ever seen, truly. And the change could be good for him, because he would be surrounded by highly trained staff.
Once the decision was made Mom decided to send dad to the day program at the same facility every day leading up to this Wednesday, when he will begin respite. We were totally crossing our fingers, but to our pleased surprise, he has done well. The first day he didn't participate much but he enjoyed watching a woman dance and sing every time music came on. Then one day when Mom brought him he walked right in and sat with everyone else. Later he told her, "Kyokai! Choe si Kyokai e po hun!" In a mix of Japanese and Taiwanese he said, "Church! This is part of Church!" Because everyone is sitting in a formation, sometimes they are singing, and sometimes someone is standing in the middle talking about something. So it gave him a feeling similar to being in church.
This is great because we have decided it is not feasible to bring Dad to church, at least for now. He talks too much now, in loud exclamations, and gets repetitive and insistent unless you actively respond. It's too stressful for Mom, and I have to admit for me and Mike as well. Easter Sunday was a blur because of Dad, and his talking has gotten a lot "worse." We decided that public places like the mall will probably be better. This weekend we took him to the mall, using a transport chair, and it worked beautifully. We were able to park right in front of the mall, put him in the chair, and push him in. When he talked or exclaimed, no one but us could really hear him because it just got lost in all the noise. There was plenty for him to look at, but he didn't seem overwhelmed. And the chair made it possible for us to move at a comfortable pace without worrying that he would suddenly stop walking and refuse to move.
In the last week I've been reading a book called, "Dementia, The Journey Ahead," by Ann Kiser Zultner and Susan Kiser Scarff. It's the story of Susan being the primary caregiver for her husband Red, after he was diagnosed with dementia, until his death in 2006. It's a combination of practical guide and personal story. I have found it very helpful, as Dad is like Red in many ways, down to the stubborn drama queen, lol. It was comforting to know that this is not uncommon behavior, and can be a reflection of their previous personality coming out in a different way. One of the things I read was that overnight trips are NOT a good idea for patients with dementia. I am assuming that depends on severity of the disease, but right now Dad is so impaired in many ways it's not difficult for me to imagine why traveling with him for a week to a new place would be a nightmare. Another section dealt with respite care, and one point she made was that respite care can give the caregiver a much needed break. But it can also give one a short term idea of what permanent residency would be like, and to help the caregiver begin to wrap their head around the idea of putting their loved in in permanent care. I can see that Mom is not ready to go there, even though Dad is digging on her last nerve, even though she is so exhausted and fed up by the end of each day. It's said that dementia can bring out the best AND the worst in a person, and that is true. But what is also true is that the dynamics of any relationship play themselves out in the worst way when dementia is added to the mix, and even the strongest of bonds are severely tested. Any dysfunction in a relationship is not going to magically disappear when one person assumes the role of caregiver, no matter how sorry the caregiver feels for the patient. In fact, that dysfunction is going to play out every single day because one half is out of their mind, and the other half has little to no reserves left. There's a meme going around right now that says, "A person with dementia is not giving you a hard time, they are having a hard time." That may be true, but to the caregiver it may not feel that way after a while. And yet, she is not ready. This is something we all will have to navigate carefully, because we are the ones who will have to live with the results of our actions. And so while the choices may seem clear, they will also have to feel right.
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