Merename, it's good to see your updates, but I'm sorry you are having such a difficult time.
I definitely know that feeling of dread in the pit of stomach when considering a visit, or when I'm driving to the care home, or getting out of my car, or walking in. What will I find? Will she be upset? How will I cope? I'm not sure that it gets easier, exactly, but with time and practise, I have gotten more used to it.
I also don't visit when I know I cannot handle it. My mother (75 and Alzheimer's and no short term memory) can't always understand what we are saying, as her ability to process information is declining, but she can still read body language, tone of voice, and facial expressions. In fact, she can have a scary laser-like focus ability to hone in on even the very slightest changes in non verbal communication. If she senses the slightest big of negative energy or emotion or expression, she will hone in on it and then she can be like a dog with a bone, worrying it, and herself, endlessly. I have to be under complete control, cheerful and pleasant and easygoing, at all times. If I appear the least bit tired or upset or anything other than cheerful and pleasant and easygoing, I get an earful about it! I could go on, but you get the idea.
I have become a better actress over the past few years, but it isn't always easy, and it's impossible if I am very tired or upset. When it's like that, I just don't visit her. It is not worth the potential upset to her (and the stress for me) to have an unpleasant visit.
I have found some coping strategies that have helped me, most of them hit upon accidentally, or suggested by someone here or in my support groups.
They mostly boil down to: having something scheduled for you after the visit that helps you, that you do. That could be listening to music, reading a book, watching a TV programme, going for a walk, having lunch or tea or coffee with a friend, chocolate/alcohol/comfort food of choice, going to a park, taking a nap, exercise of any kind, working on something creative, really anything that is fun or pleasant or distracting for you.
I find that a walk outdoors always makes me feel better, although I will be honest and say I'd rather sit on my sofa, eat snacks, and read a book. You might experiment and see if there is something that gives you relief, and then you can make it part of the routine of visiting. It helps me a lot to have something specific planned for afterwards, that I can look forward to. Otherwise the entire day, both before and after, can feel like "visit to Mum in care home."
I am very sorry to hear about the levels of distress and being unsettled that you witnessed with your Mum today. That must have been so distressing to you both, and doesn't make anything pleasant about visiting, of course.
I can really only suggest that you continue to give it time, as it's still very early days, make sure she doesn't have an infection or any other medical issue going on, and ask for a medication review. I know it took a few months and a number of adjustments to get my mother's medications correct, but once they did, it made a huge difference.
I agree with you that dementia is a horrible disease and I hate every single second of dealing with it, on every level. It causes such a lot of collateral damage, as you say.
I'm sorry I don't have better advice. If it feels right, please do keep posting. We really do want to hear how things are.
Very best wishes, and thinking of you at this difficult time.
I definitely know that feeling of dread in the pit of stomach when considering a visit, or when I'm driving to the care home, or getting out of my car, or walking in. What will I find? Will she be upset? How will I cope? I'm not sure that it gets easier, exactly, but with time and practise, I have gotten more used to it.
I also don't visit when I know I cannot handle it. My mother (75 and Alzheimer's and no short term memory) can't always understand what we are saying, as her ability to process information is declining, but she can still read body language, tone of voice, and facial expressions. In fact, she can have a scary laser-like focus ability to hone in on even the very slightest changes in non verbal communication. If she senses the slightest big of negative energy or emotion or expression, she will hone in on it and then she can be like a dog with a bone, worrying it, and herself, endlessly. I have to be under complete control, cheerful and pleasant and easygoing, at all times. If I appear the least bit tired or upset or anything other than cheerful and pleasant and easygoing, I get an earful about it! I could go on, but you get the idea.
I have become a better actress over the past few years, but it isn't always easy, and it's impossible if I am very tired or upset. When it's like that, I just don't visit her. It is not worth the potential upset to her (and the stress for me) to have an unpleasant visit.
I have found some coping strategies that have helped me, most of them hit upon accidentally, or suggested by someone here or in my support groups.
They mostly boil down to: having something scheduled for you after the visit that helps you, that you do. That could be listening to music, reading a book, watching a TV programme, going for a walk, having lunch or tea or coffee with a friend, chocolate/alcohol/comfort food of choice, going to a park, taking a nap, exercise of any kind, working on something creative, really anything that is fun or pleasant or distracting for you.
I find that a walk outdoors always makes me feel better, although I will be honest and say I'd rather sit on my sofa, eat snacks, and read a book. You might experiment and see if there is something that gives you relief, and then you can make it part of the routine of visiting. It helps me a lot to have something specific planned for afterwards, that I can look forward to. Otherwise the entire day, both before and after, can feel like "visit to Mum in care home."
I am very sorry to hear about the levels of distress and being unsettled that you witnessed with your Mum today. That must have been so distressing to you both, and doesn't make anything pleasant about visiting, of course.
I can really only suggest that you continue to give it time, as it's still very early days, make sure she doesn't have an infection or any other medical issue going on, and ask for a medication review. I know it took a few months and a number of adjustments to get my mother's medications correct, but once they did, it made a huge difference.
I agree with you that dementia is a horrible disease and I hate every single second of dealing with it, on every level. It causes such a lot of collateral damage, as you say.
I'm sorry I don't have better advice. If it feels right, please do keep posting. We really do want to hear how things are.
Very best wishes, and thinking of you at this difficult time.
