Been a while since I last posted on here, so a quick update first.
Mum moved in to a care home over Easter this year, only a couple of weeks after her 54th birthday. While my dad had done a sterling job of looking after her at home, she was no longer capable of going up or down stairs by herself (and even with assistance, could take a very long time as she was terrified of falling). Shortly after the move, she lost the ability to walk or even stand up, so is now in a wheelchair (awaiting funding for a specially adapted one to stop her from sliding forward and out of the chair altogether). She is also now on a liquid diet, as chewing and swallowing has become an issue, and combined with the fact that she is no longer walking, this means she looks skeletal. While she can sometimes respond appropriately to other people's comments (laughing at a joke or pulling a face at something she doesn't approve of for example) and sometimes comes out with the odd word or two, I haven't heard her say anything that makes sense in context for many months now, and I don't think she's known who I am for at least a year. I'd get a blank look a year ago, clung to as if I were her mother (who, by the way, is still alive and reasonably well for 77yrs old!) earlier this year, and now unrecognized again (though she is now a lot happier to interact with me in some way - maybe because she doesn't feel the pressure of 'hostess mode' anymore. Her GP says that bearing in mind the rate of her decline so far, he would be surprised if she survived another year (though as we all know, symptoms can 'plateau' for years)
I've visited Mum at her care home a few times now, but the first time I went there, my husband came along too, and ended up having a panic attack because he didn't recognize her at first (This was around May, after Mum had had a few weeks to settle in, but OH hadn't seen her since Christmas, and she had gone downhill quite drastically since then). I ended up spending more time trying to calm him down so we could make the train journey home than I did with Mum that visit, and I haven't dared bring my husband back there, or properly speak with him about Mum since, as I know it upsets him and I really need him to be strong for me as we have other things (such as an upcoming house move) to worry about too.
The thing is, it feels like this is the only place I can talk about how sad all this makes me. I can't talk to the rest of my family, as of course they're suffering too, and I don't have any close friends living nearby (funnily enough, the closest 'friend' I had around here quickly distanced herself from me when she heard about Mum). I don't dare tell anyone at work, as my brother tried that and has since had a long list of 'issues' involving his manager (including having his pay docked for something that clearly was not his fault, and having holiday requests only granted at very short notice). I had similar problems with my last job (which resulted in my effectively being hounded out of the company about 2 years ago) and I really want to keep this one!
So, another long ramble. Must try to keep posting now, as I really don't know what's worse - the thought of Mum dying, or the realization that the longer she lives like this, the less I remember of her as she was when she was well. Sounds selfish put like that, but I hope someone understands.
Mum moved in to a care home over Easter this year, only a couple of weeks after her 54th birthday. While my dad had done a sterling job of looking after her at home, she was no longer capable of going up or down stairs by herself (and even with assistance, could take a very long time as she was terrified of falling). Shortly after the move, she lost the ability to walk or even stand up, so is now in a wheelchair (awaiting funding for a specially adapted one to stop her from sliding forward and out of the chair altogether). She is also now on a liquid diet, as chewing and swallowing has become an issue, and combined with the fact that she is no longer walking, this means she looks skeletal. While she can sometimes respond appropriately to other people's comments (laughing at a joke or pulling a face at something she doesn't approve of for example) and sometimes comes out with the odd word or two, I haven't heard her say anything that makes sense in context for many months now, and I don't think she's known who I am for at least a year. I'd get a blank look a year ago, clung to as if I were her mother (who, by the way, is still alive and reasonably well for 77yrs old!) earlier this year, and now unrecognized again (though she is now a lot happier to interact with me in some way - maybe because she doesn't feel the pressure of 'hostess mode' anymore. Her GP says that bearing in mind the rate of her decline so far, he would be surprised if she survived another year (though as we all know, symptoms can 'plateau' for years)
I've visited Mum at her care home a few times now, but the first time I went there, my husband came along too, and ended up having a panic attack because he didn't recognize her at first (This was around May, after Mum had had a few weeks to settle in, but OH hadn't seen her since Christmas, and she had gone downhill quite drastically since then). I ended up spending more time trying to calm him down so we could make the train journey home than I did with Mum that visit, and I haven't dared bring my husband back there, or properly speak with him about Mum since, as I know it upsets him and I really need him to be strong for me as we have other things (such as an upcoming house move) to worry about too.
The thing is, it feels like this is the only place I can talk about how sad all this makes me. I can't talk to the rest of my family, as of course they're suffering too, and I don't have any close friends living nearby (funnily enough, the closest 'friend' I had around here quickly distanced herself from me when she heard about Mum). I don't dare tell anyone at work, as my brother tried that and has since had a long list of 'issues' involving his manager (including having his pay docked for something that clearly was not his fault, and having holiday requests only granted at very short notice). I had similar problems with my last job (which resulted in my effectively being hounded out of the company about 2 years ago) and I really want to keep this one!
So, another long ramble. Must try to keep posting now, as I really don't know what's worse - the thought of Mum dying, or the realization that the longer she lives like this, the less I remember of her as she was when she was well. Sounds selfish put like that, but I hope someone understands.
