Hi there. I am new to talking point. My dad was diagnosed with Alzheimer's in July and since then my mum and siblings have been trying to come to terms with this horrid disease. Although we are naturally worried about my dad, our main concern at the moment is my mum as his main carer and how she is coping (or not in this case). I don't think she wants to face things until she has to and then when difficult situations arise she doesn't know what to do and spirals into a depressive state herself. It is like she is swimming against the tide rather than with it. The situation is awful for all of us. We have been trying to encourage her to get help but she insists all the time that no one can do anything. It is frustrating for us children and we don't know what to do or who to turn to. My father is currently suffering from a UTI and with this some unusual behaviours have arisen which has made this issue come to the fore even more. Dad has been assigned a case worker. Should we contact her? Sorry if I seem clueless but my mum is quite selective with what she tells us and when. Something tells me we need to take charge but how? Does anyone have any advice?
What to do?!
- Thread starter Sal73
- Start date
Hello Sal,
Welcome to TP.
This is such a worrying situation for you and your mum. I was wondering if you and your mum could go together to your nearest Alzheimer Society Centre. If you make an appointment to go in for a chat, I think you will find it very informative and supportive. You could explain your worries about how your mum is/is not coping ahead of time.
If you have already done this, my apologies. Just that I received great help from there. Tips on how to deal with situations, information about help available and advice on applying for any entitlements as well as some TLC!
TP is a wonderful place to come for support and advice as well, but I am thinking your mum may prefer face to face discussion rather than using an internet forum to help her understanding of your dad's illness.
Best wishes
Welcome to TP.
This is such a worrying situation for you and your mum. I was wondering if you and your mum could go together to your nearest Alzheimer Society Centre. If you make an appointment to go in for a chat, I think you will find it very informative and supportive. You could explain your worries about how your mum is/is not coping ahead of time.
If you have already done this, my apologies. Just that I received great help from there. Tips on how to deal with situations, information about help available and advice on applying for any entitlements as well as some TLC!
TP is a wonderful place to come for support and advice as well, but I am thinking your mum may prefer face to face discussion rather than using an internet forum to help her understanding of your dad's illness.
Best wishes
Hi there, thanks for replying. I haven't yet been to the alzheimers society as I wasn't sure if that was the role of the support worker but I will certainly look into it. I have this afternoon managed to get the number of the support worker from my mum so thought it maybe a good idea to raise my concerns with her. She may well advise the same course of action as you.
Thanks again
Sal
Sent from my GT-I9100 using Talking Point mobile app
Thanks again
Sal
Sent from my GT-I9100 using Talking Point mobile app
I'm sorry, Sal's mum, there is things you can do to make life easier for everybody. If mum won't, then you should, because eventually it will make life easier for everyone. See what help is available in your area. There may be cafés for sufferers and Carers for instance. The more you can find out now, the easier in the long run. As I said to someone else, each patient is different both in signs shown and speed of development.
UTI's are a problem, so hope the doc knows and is sorting it. My OH had one about 4years ago, but none since, thank goodness.
UTI's are a problem, so hope the doc knows and is sorting it. My OH had one about 4years ago, but none since, thank goodness.
Hello Sal
Welcome to Talking Point and so sorry to hear about your Dad. I am in a similar position. My stepdad was diagnosed with Lewy bodies dementia in July and has had a very rapid deterioration. My mum is really struggling to cope and it is a very stressful and emotional time for us all. I don't think my mum can manage much longer due to the rapid deterioration and my stepdad is also physically disabled.
Advice? Navigating the health and social care system is a nightmare and I work in the NHS and have some clue about it! If I were you I would:
- ring the case worker and explain your concerns and ask to meet with them and your mum to discuss your Dad's current symptoms and your Mum's needs as a carer. if the caseworker works in the NHS you also need to be allocated a social worker for your dad and ask your GP or the health caseworker to do this. If the caseworker is a social worker, ask them to talk to the health professionals about your Dad's diagnosis;
- ask the nHs to write a letter to your mum and dad explaining the diagnosis and ask for a care plan for your Dad. Ask them how often the care plan will be reviewed and whether your dad can have any support from visiting a memory clinic, from home visits from a Community Psychiatric Nurse or a Psychologist. You can share this with social services;
- ask social services to assess your dad and your mum and also put together a care plan. Explore if he could go to a day centre a couple of days a week, if carets can go in each day to help or for your dad to go into a care home for a week every so often to give your mum some respite;
- contact Alzheimer's society locally and see what support they can offer. They have dementia cafes in some places and support workers who can help your mum get some information and support;
- have a look on this site there are some fantastic leaflets and information packs about dementia;
- get your mum to do a log of all your Dad's symptoms over a few weeks. It will help you all discuss what is happening and share them with social services and health.
My main advice is to fight for your mum and dad. The health and social care system is overwhelmed by people and patients and if you don't make sure they know about your mum and dad and fight for their rights then you'll always be bottom of the pile. remind them that your mum and dad are vulnerable and their safety needs to be looked after by them.
As a daughter dealing with this it is a nightmare and I wish I had some sound words about how to cope but I don't. It's hard and stressful and heartbreaking. Try to look after yourself too. A quote I saw helps sometimes : 'courage isn't always a loud roar, mostly it is a quiet voice at the end of the day saying I will try again tomorrow'.
Take care.
Jo
X
Welcome to Talking Point and so sorry to hear about your Dad. I am in a similar position. My stepdad was diagnosed with Lewy bodies dementia in July and has had a very rapid deterioration. My mum is really struggling to cope and it is a very stressful and emotional time for us all. I don't think my mum can manage much longer due to the rapid deterioration and my stepdad is also physically disabled.
Advice? Navigating the health and social care system is a nightmare and I work in the NHS and have some clue about it! If I were you I would:
- ring the case worker and explain your concerns and ask to meet with them and your mum to discuss your Dad's current symptoms and your Mum's needs as a carer. if the caseworker works in the NHS you also need to be allocated a social worker for your dad and ask your GP or the health caseworker to do this. If the caseworker is a social worker, ask them to talk to the health professionals about your Dad's diagnosis;
- ask the nHs to write a letter to your mum and dad explaining the diagnosis and ask for a care plan for your Dad. Ask them how often the care plan will be reviewed and whether your dad can have any support from visiting a memory clinic, from home visits from a Community Psychiatric Nurse or a Psychologist. You can share this with social services;
- ask social services to assess your dad and your mum and also put together a care plan. Explore if he could go to a day centre a couple of days a week, if carets can go in each day to help or for your dad to go into a care home for a week every so often to give your mum some respite;
- contact Alzheimer's society locally and see what support they can offer. They have dementia cafes in some places and support workers who can help your mum get some information and support;
- have a look on this site there are some fantastic leaflets and information packs about dementia;
- get your mum to do a log of all your Dad's symptoms over a few weeks. It will help you all discuss what is happening and share them with social services and health.
My main advice is to fight for your mum and dad. The health and social care system is overwhelmed by people and patients and if you don't make sure they know about your mum and dad and fight for their rights then you'll always be bottom of the pile. remind them that your mum and dad are vulnerable and their safety needs to be looked after by them.
As a daughter dealing with this it is a nightmare and I wish I had some sound words about how to cope but I don't. It's hard and stressful and heartbreaking. Try to look after yourself too. A quote I saw helps sometimes : 'courage isn't always a loud roar, mostly it is a quiet voice at the end of the day saying I will try again tomorrow'.
Take care.
Jo
X
Similar threads
