Mum's in a care home for respite care this week. Its the first time, apart from a week's psychiatric assessment a while back. I thought I'd come to terms with what's happening to her, but when I saw her shuffling along the corridor with the others, looking so lost and upset, I suddenly had a fresh wave of realisation (if that makes sense). I can't believe that I've let her go away from home like that, to be cared for by strangers, and feel I should be altering my life to do it myself, along with Dad. But people say my marriage will suffer, Mum's lived her life, now I should live mine etc. But surely this IS my life, and Mum is still living hers - its not over yet! As I mentioned before, I've got a post-grad university place for October (and they've told me it can't be postponed), and Dad is desperate for me to take it up, but it would mean I won't be able to spend much time with him and Mum. I think he's being unrealistic about how much time I currently spend helping out, and how he'd cope without me. He's shattered most of the time, and is 79 himself with a very dodgy hip and knees. A few years ago he wanted my husband and I to sell up and buy a bigger property where we could all live side by side, but I saw a future of becoming everyone's carer, and resisted. Now I'm feeling incredibly selfish and guilty - if I'm fit and healthy, it may be the right thing to do after all. Is personal ambition really important when I could be helping Mum and Dad to have a better quality of life in their last years? I'm also worried that Mum might need to go into care eventually anyway, as I know many of you have found with your own loved ones. I've been wrestling with this for ages, and am getting precisely nowhere - I'd appreciate any advice. Help!!
How do you make a decision like this?
- Thread starter janey
- Start date
Dear Janey,
Your personal ambition is paramount. Forget about the scarey 'what if's'. Now is now!
You've identified possible problems for later on and done this very well. Get the infrastructure in place for those eventualities. That means investigating care support, attendance allowances from the Social Services and visits from same. That done, you can proceed with your life. Use all the facilites on this website and in particular, the Resources section, which will now give you direct access to help and advice. That will give you some breathing space to start your course. Once you are in, I'm sure the Uni will be able to help you out in crisis times, by deferring courses and exams. The important thing is to get in there first.
Don't be afraid to post questions - we'll all help you and get info for you too whenever possible - as well as tons of support.
Jude
Your personal ambition is paramount. Forget about the scarey 'what if's'. Now is now!
You've identified possible problems for later on and done this very well. Get the infrastructure in place for those eventualities. That means investigating care support, attendance allowances from the Social Services and visits from same. That done, you can proceed with your life. Use all the facilites on this website and in particular, the Resources section, which will now give you direct access to help and advice. That will give you some breathing space to start your course. Once you are in, I'm sure the Uni will be able to help you out in crisis times, by deferring courses and exams. The important thing is to get in there first.
Don't be afraid to post questions - we'll all help you and get info for you too whenever possible - as well as tons of support.
Jude
Janey
it is devastating the first time you see the person in the care home, particularly the second day when you come to visit. There's no way around that. Pure horror.
You have several things involved in your posting.
Firstly, Mum has gone on respite, not permanently. She WILL be returning, and if you REALLY can't stand the idea of making a life for yourself, then you can just say "that's it then, I'll care for her/them until I'm no longer needed". If you take that route, then there are things you can put in place to help you. There will be other things you can do after. Different, but other things.
Give her time to adjust to the respite for a few days. They do adjust - some more, some less. See how it goes. Don't panic right away. Then, consider that if Mum were in a home permanently, you wouln't just dump her there, you would visit. She would have her own space, etc.
It is your life - just take time to check out all the options. I'd be trying the university if I were you...
it is devastating the first time you see the person in the care home, particularly the second day when you come to visit. There's no way around that. Pure horror.
You have several things involved in your posting.
Firstly, Mum has gone on respite, not permanently. She WILL be returning, and if you REALLY can't stand the idea of making a life for yourself, then you can just say "that's it then, I'll care for her/them until I'm no longer needed". If you take that route, then there are things you can put in place to help you. There will be other things you can do after. Different, but other things.
Give her time to adjust to the respite for a few days. They do adjust - some more, some less. See how it goes. Don't panic right away. Then, consider that if Mum were in a home permanently, you wouln't just dump her there, you would visit. She would have her own space, etc.
It is your life - just take time to check out all the options. I'd be trying the university if I were you...
Thanks a lot Jude and Bruce. I'll digest your advice later when I'm feeling more rational - I've just returned from visiting Mum - we'd had a lovely afternoon, but then when I sat her down at the table for tea and explained that I had to go she went ballistic, pulled the tablecloth off and shouted that I didn't care etc. I KNOW its the dementia talking, not her, but it hurts! Oh well - I'll feel better later. Meanwhile, thanks so much for your support.
Dear Janey,
What a terrible end to a lovely afternoon. You must be feeling very upset about this. It isn't your fault, as you know.
I've been caring for my parents for the last five years on and off full time and part time and they have never accused me of 'not caring' about or for them. I don't think they have the rationale to be able to conceptualise that much. Most AD sufferers aren't that much together.
Your Mum seems like she might have brighter moments - I don't really know if it would be a wise idea, but perhaps you could risk asking her what she would like to happen in the future. Get your father in on the conversation too. Up to you. It might help clear up some issues.
Jude
What a terrible end to a lovely afternoon. You must be feeling very upset about this. It isn't your fault, as you know.
I've been caring for my parents for the last five years on and off full time and part time and they have never accused me of 'not caring' about or for them. I don't think they have the rationale to be able to conceptualise that much. Most AD sufferers aren't that much together.
Your Mum seems like she might have brighter moments - I don't really know if it would be a wise idea, but perhaps you could risk asking her what she would like to happen in the future. Get your father in on the conversation too. Up to you. It might help clear up some issues.
Jude
Its a nice idea Jude, but whatever question I ask Mum these days, she replies 'Yes'. We conduct a conversation, but her replies don't fit the questions. She was a very clever person, and still has a grasp of her advanced social skills - she even fools me sometimes, but nowadays I avoid putting her on the spot to save us both the discomfort of knowing she doesn't know what I'm talking about. Dad and I tried for a fortnight to get her to understand about the respite care, but it didn't get through at all until she'd spent a night there. I could also see that she didn't know who I was when I arrived today - she realised she knew me after a bit, but even then I got the impression she thought I was Dad. Having said all that, I WILL try asking her what she wants for the future, when Dad's there - I'm always ready to give her the benefit of the doubt, and it'd be great if she could tell us. Her dementia is vascular, the progress of which apparently varies even more from person to person than AD, so its impossible to know what part of her brain is going to be affected next. As for help at home, there is a sitter who comes for 4-5 hours roughly once a fortnight, although unfortunately demand is so great that its impossible to arrange a regular day. The dementia day centre where she was going to go sent her home during her first visit last week after 2 hours (!) saying she was too disruptive, so that's a non-starter. Moreover, Dad won't have anyone in to help with the physical care, because they've always been incredibly private people, and he doesn't want his privacy invaded except by me (and my long-suffering husband). So its down to me to be the cavalry when I see Dad going under. Oops- this has turned into a prize winning moan
Day centres seem to be able to cope with amiable folk who demand little, but they throw up their hands when a younger person with dementia, or a more challenging person goes along.
Our day centre banned Jan outright for being disruptive. Just as well. She was getting mad at being left with so many older people anyway. Our attempt at trying to tell her she was staff and was there to help them really fell flat!
Our day centre banned Jan outright for being disruptive. Just as well. She was getting mad at being left with so many older people anyway. Our attempt at trying to tell her she was staff and was there to help them really fell flat!
Dear Janey,
I know what you mean about the 'white lies'. My father has an inbuilt tuning fork and makes me feel about 5 years' old when I try an evade questions or lie to him.
Jude
I know what you mean about the 'white lies'. My father has an inbuilt tuning fork and makes me feel about 5 years' old when I try an evade questions or lie to him.
Jude
when any of our family visit my gran we have to tell awhite lie as if we say we are going she will get upset andc ry so we sya we are going to the shop or her room or even the toilet so as not to upset her as soonas we are gone ahe will forget.
just went yesterday to visit my gran in her home for the first time and it was awful not her seeing how bad some of the other residents are, it was lovely as we had a half conversation and she was obviously pleased to see me, she wanted me to take her for some fresh air but i wasnt allowed as the staff didnt feel she was settled enough, i promised her next time, as my daughter really does not want to go and see her in the home and gran really enjoys seeing her.
just went yesterday to visit my gran in her home for the first time and it was awful not her seeing how bad some of the other residents are, it was lovely as we had a half conversation and she was obviously pleased to see me, she wanted me to take her for some fresh air but i wasnt allowed as the staff didnt feel she was settled enough, i promised her next time, as my daughter really does not want to go and see her in the home and gran really enjoys seeing her.
Dear Nikita,
Sometimes those little white lies are very important. There was some very good advice given about this on the web recently [can't remember from whom, sorry] about 'telling AD sufferers what they want to hear]. I try and do that as far as possible.
Best wishes, Jude
Sometimes those little white lies are very important. There was some very good advice given about this on the web recently [can't remember from whom, sorry] about 'telling AD sufferers what they want to hear]. I try and do that as far as possible.
Best wishes, Jude
