Well done - that first step is a huge one. If you haven't already got an Attendance Allowance for your mum I would seriously recommend completing the application form. I arranged for a lovely lady from the Citizens Advice Bureau to come to the house to help us complete one each for my parents. It really helps to pay for any help you need, be it carers, cleaners, gardeners etc. Anything that can assist your mum, and therefore help you is worth getting into place.
Hopefully taking mum for first visit to gp tomorrow, What sort of things should we tell gp about?
- Thread starter annielou
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thanks @Mumof3kids we hadn't really thought if any benefits might be available, so will keep that in mind for when/if mum needs carers etc x
I'm not really sure when/how carers are arranged and determined if needed. We've only had first short appointment with gp so far, who said after blood and urine test are done to rule out other causes she will refer mum to memory clinic. I was assuming we'd get more information of what to do/what care is available after been there and got a diagnosis. Don't know if that's right
I'm not really sure when/how carers are arranged and determined if needed. We've only had first short appointment with gp so far, who said after blood and urine test are done to rule out other causes she will refer mum to memory clinic. I was assuming we'd get more information of what to do/what care is available after been there and got a diagnosis. Don't know if that's right
I don't think we got any information at all, although by the final diagnosis I had moved mum into an extra care flat as it was clear we (my brother and I and our families) couldn't support her to live at home, and I didn't think she was quite ready for a care home.
@jugglingmum eek! @canary Gosh I hope they were good leaflets at least.
I have no idea how any of this works, I better get reading and find out eh. I assumed nothing happened before a diagnosis, and then we would be put onto someone who would assess if mum needed help and what she was entitled to.
I have no idea how any of this works, I better get reading and find out eh. I assumed nothing happened before a diagnosis, and then we would be put onto someone who would assess if mum needed help and what she was entitled to.
Hi @annielou it's definitely worth looking into home care provision (find out a bit about the companies in your area) and available benefits such as attendance allowance. Unfortunately as @canary pointed out the support that you are given is somewhat limited! You get some basic pointers (e.g. from the Social Worker, although that can take a while before they attend), but sadly it's pretty much all down to you to work out. However, there is some good news......I hadn't found the forum and you have, which means you will be able to get a lot of sensible help, guidance and support.
@annielou @jugglingmum it was actually when my mum had mobility issues and she was being assessed at home by the OT for aids around the house when the OT suggested both my mum and dad (he has dementia) should apply for AA. She suggested that we'd need assistance completing the form - hence I contacted the CAB who were wonderful. Unfortunately there was no advice given from the memory clinic whatsoever. Being on here has been a wonderful source of information for which I am truly grateful. When I did arrange the carers to help with mum, I remember I contacted her GP asking for her to be referred to the relevant social service to get the ball rolling. She was given the first 6 weeks free of charge and then we paid for the visits. But that's what the AA was for.
As others have said you should be able to claim AA, it can be quite a hard form to fill in for a PWD as they don't fit the boxes so getting help from local AGE UK CAB or similar is often recommended.
My mum was clearly self funding, so I would have got on with finding carers if she hadn't gone into sheltered extra care (long story but her house was uninhabitable - so I had to find somewhere else) - I considered sheltered and also just a flat /bungalow - but realised I would be having to do everything so I just wouldn't have the time.
If your mum is self funding (assets not including house above £23k ish in England- different rules elsewhere I think) you could try getting a 'cleaner' in who is actually someone to keep her company for a couple of hours a day. Your mum seems frightened in her own house.
You need to consider how much you are prepared to do, as the more you do the more it will need, this is the nature of dementia.
It isn't just about the needs of the PWD but your life as well, and things should be looked at as a whole when you determine how much time you can spend supporting your mum. I had 2 young children at the time so it was bleedin obvious I couldn't really do much hands on.
If you are not self funding you will have to beat a path to the local social services for support, which as there seem no direct care needs might not be forthcoming, although they might help with daycare places, which might work for your mum when she is anxious alone.
At the stage your mum is at, if she is prepared to move sheltered extra care might work, as there are activities but you are still in your own flat. My mum was clearly more settled and less anxious in her flat being aware there were people on hand, and with the day to day anxiety of 'what should I be doing now' removed.
My mum was clearly self funding, so I would have got on with finding carers if she hadn't gone into sheltered extra care (long story but her house was uninhabitable - so I had to find somewhere else) - I considered sheltered and also just a flat /bungalow - but realised I would be having to do everything so I just wouldn't have the time.
If your mum is self funding (assets not including house above £23k ish in England- different rules elsewhere I think) you could try getting a 'cleaner' in who is actually someone to keep her company for a couple of hours a day. Your mum seems frightened in her own house.
You need to consider how much you are prepared to do, as the more you do the more it will need, this is the nature of dementia.
It isn't just about the needs of the PWD but your life as well, and things should be looked at as a whole when you determine how much time you can spend supporting your mum. I had 2 young children at the time so it was bleedin obvious I couldn't really do much hands on.
If you are not self funding you will have to beat a path to the local social services for support, which as there seem no direct care needs might not be forthcoming, although they might help with daycare places, which might work for your mum when she is anxious alone.
At the stage your mum is at, if she is prepared to move sheltered extra care might work, as there are activities but you are still in your own flat. My mum was clearly more settled and less anxious in her flat being aware there were people on hand, and with the day to day anxiety of 'what should I be doing now' removed.
My hospital social worker told me mom wouldn't be accepted in ExtraCare because she was deteriorating too much for them, still haven't got a community social worker. @annielou your story sounds so much like my mom, keeps trying to hide what's going on as says it makes her look stupid. I've found the nodding and shaking out of sight quite useful too, also if you repeat something what she has said eg about 'nightmares' once she starts telling someone about these, she forgets and lets loose with it all!
Thanks so much for the replies. Defo need to do my homework now then.
Doesn't seem right that while trying to get our heads round what is happening to loved ones and how to deal with them ourselves we also have to find out what can and cant be done to get help from other sources and track it down ourselves. But I suppose it's unrealistic of me to to think someone is going to come along and say your mum needs this and so I'll set that off for you or even your mum needs this and this is how you arrange it. But it would be so nice wouldn't it, I don't feel clever enough or that I have enough space in my head to find and figure it all out.
But I'll have to because mum needs me to.
Much admiration to all of you who have and are still doing it x
Doesn't seem right that while trying to get our heads round what is happening to loved ones and how to deal with them ourselves we also have to find out what can and cant be done to get help from other sources and track it down ourselves. But I suppose it's unrealistic of me to to think someone is going to come along and say your mum needs this and so I'll set that off for you or even your mum needs this and this is how you arrange it. But it would be so nice wouldn't it, I don't feel clever enough or that I have enough space in my head to find and figure it all out.
But I'll have to because mum needs me to.
Much admiration to all of you who have and are still doing it x
Hi @annielou, you are right, it seems very daunting when you still trying to digest what is happening with Mum, and the worry and uncertainty that you have - believe me that's how most of us felt/feel. But you will be OK and there is a wealth of knowledge and support on here to help you. Let us know how you get on. Take care of yourself.
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As @Pete1 says you'll find your way through. DTP helped me through. In the early stages I found dad a helper who just went in on three weekdays to give me a break and make sure dad was OK. She did a bit of housework and gardening and had cuppa and a chat and made sure he'd remembered to take his pills. I used to go on the other 4 days and took dad out a couple of times a week. As he lived near me he would come for dinner several times a week (he was still driving at this point) and I changed his care as he needed more help without him really realising what was happening.
I kept my eyes on my neighbour's carers who were always friendly and punctual so I asked which agency they worked for. They gave me a leaflet so when the time came I knew who to call. They were better than I could have hoped for.
I got by with a bit of forward planning and a lot of advice from the people on DTP and I'm sure you will too.
I kept my eyes on my neighbour's carers who were always friendly and punctual so I asked which agency they worked for. They gave me a leaflet so when the time came I knew who to call. They were better than I could have hoped for.
I got by with a bit of forward planning and a lot of advice from the people on DTP and I'm sure you will too.
I had a very disappointing experience with the memory team. At the GP's request they sent someone round to the care home to assess Mum. She did quite badly on the tests so they prescribed Mementine . A month later they decided it had had no effect so they discharged Mum . The Care home told me ....nobody wrote to explain ...and no one has been to see her since. So I wouldn't build up to much hope that The Memory team will provide any help or support.
