• We're currently experiencing technical issues with our newsletter software, so our Dementia Talking Point monthly updates have been put on hold for now. We hope to restart the newsletter soon.

    Find out more >here<.

How to carry on

Andrea57

Registered User
Feb 15, 2020
52
Chesterfield
How can you find the will to go on caring when everything you've tried just doesn't help and you feel you literally can't go on with being a carer or with life.
 

lemonbalm

Registered User
May 21, 2018
580
Tell us a bit more about yourself @Andrea57 and what you are having to deal with. There will be lots of advice and support for you here, whatever problems you are having.
 

Andrea57

Registered User
Feb 15, 2020
52
Chesterfield
I am carer for my mum she vacular dementia she has declined over the last 3 weeks or so.we are just coming to the end of DRRT that she was referred to by her cpn, meds have been changed which are helping to keep her calmer about the delusions and paranoia even though she still had them. DRRT have been brilliant but I don't think I can go on doing the caring I am so low that I don't think I can get myself back up this time.I have spoken to their councillor but can't say everything I need to because I get upset and can't get the words out.
 
Last edited:

facline

Registered User
Jul 15, 2020
33
Birmingham
Hello @Andrea57, I think I know how you are feeling and want you to know that you are not alone. I had also reached this point when caring for my nan who also has vascular dementia - she has seen a decline in the last few weeks also. Sorry if this is a stupid question but is there a social worker involved who understands the pressure you are under and also what it's doing to your own health? If you are unable to speak to professionals without getting upset you would hope that they would understand the severity of the situation so I'm sorry to hear that this hasn't been the case. Has respite been mentioned / would you find that useful? If your mum has declined, there might also be a need for social services to look at implementing a package of care or long term residential care if this is something you would feel okay with.

Please try and think about how strong you've been to deal with this on your own. I'm sorry things are difficult for you right now. We're all here for you.
 

kindred

Registered User
Apr 8, 2018
2,493
I am carer for my mum she vacular dementia she has declined over the last 3 weeks or so.we are just coming to the end of DRRT that she was referred to by her cpn, meds have been changed which are helping to keep her calmer about the delusions and paranoia even though she still had them. DRRT have been brilliant but I don't think I can go on doing the caring I am so low that I don't think I can get myself back up this time.I have spoken to their councillor but can't say everything I need to because I get upset and can't get the words out.
Getting you help and respite is the priority. I so agree with facline. Please act as quickly as you can. Time to look after you.
Warmest Kindred
 

lemonbalm

Registered User
May 21, 2018
580
We understand how very hard caring for someone with dementia can be @Andrea57. Part of caring for someone else is knowing when you need help yourself. We will all try and help you through this, however bleak it may seem right now. Keep posting for advice and support.
 

Andrea57

Registered User
Feb 15, 2020
52
Chesterfield
Hello @Andrea57, I think I know how you are feeling and want you to know that you are not alone. I had also reached this point when caring for my nan who also has vascular dementia - she has seen a decline in the last few weeks also. Sorry if this is a stupid question but is there a social worker involved who understands the pressure you are under and also what it's doing to your own health? If you are unable to speak to professionals without getting upset you would hope that they would understand the severity of the situation so I'm sorry to hear that this hasn't been the case. Has respite been mentioned / would you find that useful? If your mum has declined, there might also be a need for social services to look at implementing a package of care or long term residential care if this is something you would feel okay with.

Please try and think about how strong you've been to deal with this on your own. I'm sorry things are difficult for you right now. We're all here for you.
Hi mum has a social worker and has been on the reablement for 7 weeks now I only spoke to social worker about a week ago to see what was happening because it should only be for 6 weeks she told me the contract had not been cancelled because of covid.mum has a carer for 30 mins 4 mornings a week for personal care and breakfast ,and to promt meds that I put out.I had a Phone appointment this morning with the social worker to see what will happen next but they called yesterday to cancel it , I had worked myself all week for it now don't know when it will be.
 

Andrea57

Registered User
Feb 15, 2020
52
Chesterfield
Hello @Andrea57, I think I know how you are feeling and want you to know that you are not alone. I had also reached this point when caring for my nan who also has vascular dementia - she has seen a decline in the last few weeks also. Sorry if this is a stupid question but is there a social worker involved who understands the pressure you are under and also what it's doing to your own health? If you are unable to speak to professionals without getting upset you would hope that they would understand the severity of the situation so I'm sorry to hear that this hasn't been the case. Has respite been mentioned / would you find that useful? If your mum has declined, there might also be a need for social services to look at implementing a package of care or long term residential care if this is something you would feel okay with.

Please try and think about how strong you've been to deal with this on your own. I'm sorry things are difficult for you right now. We're all here for you.
I keep things bottled up if someone says how are you my usual answer is yes fine thanks when really I feel like I am dying inside , because I don't want to burden anyone with my thoughts and feelings.
 

facline

Registered User
Jul 15, 2020
33
Birmingham
Hi mum has a social worker and has been on the reablement for 7 weeks now I only spoke to social worker about a week ago to see what was happening because it should only be for 6 weeks she told me the contract had not been cancelled because of covid.mum has a carer for 30 mins 4 mornings a week for personal care and breakfast ,and to promt meds that I put out.I had a Phone appointment this morning with the social worker to see what will happen next but they called yesterday to cancel it , I had worked myself all week for it now don't know when it will be.
Hi @Andrea57, I'm so sorry the appointment was cancelled - hope they get in touch soon with a new date, if they don't give you a new date soon and you are feeling able to, I would contact the duty worker and see if they can arrange a new appointment. It sounds like you could really benefit from respite and you are more than entitled to ask for this. Thinking ahead, would having a few more care calls per day / week help take some of the pressure off? This is something that social services should be able to implement quite quickly, especially if you already have a carer going in.
 

facline

Registered User
Jul 15, 2020
33
Birmingham
I keep things bottled up if someone says how are you my usual answer is yes fine thanks when really I feel like I am dying inside , because I don't want to burden anyone with my thoughts and feelings.
That's a very recognisable feeling, @Andrea57. Do you have any support in place for yourself such as someone you are able to call and talk (an organisation or even your GP) or a friend who understands? The forum is always here for you to be honest, too.
 

Izzy

Volunteer Moderator
Aug 31, 2003
62,824
69
Dundee
Welcome from me too @Andrea57. As others have said - no need to keep things bottled up. Please come here and share any time - there will always be someone to listen.

If you’d like to speak to someone on the Dementia Connect support line the details can be found here -


The main thing is to keep posting here Wishing you strength,
 

Alice nun

Registered User
Jul 9, 2017
22
Hello Andrea57 I feel for you and I also felt I was writing this myself my husband has vascular dementia and I care for him alone 24/7 and do the same as you I’m ok but like you say a much different story, I don’t post much but I read so much on here It helps me to read such lovely comments after someone as come in for support from this forum, keep posting all I can say is your not alone on here and you are doing an amazing job sending you lots of understanding x
 

jennifer1967

Registered User
Mar 15, 2020
698
i also have a husband with vascular dementia. he has good and bad days.sometimes it sounds like he is not pleased with me but its just the dementia. please take all the support and advice you recieve. the people on the forum are lovely and have picked me up quite a few times they are really brilliant
 

Firecatcher

Registered User
Jan 6, 2020
52
I’d suggest you write down what you want to say so that you don’t get upset when you meet with professionals. You are clearly close to breaking point but the problem is social services will be quite happy to let you shoulder the burden and carry on unless you are more assertive with them. You really do need to insist you need help and not allow them to fob you off. If you weren’t around they would have to step in.
 

Alice nun

Registered User
Jul 9, 2017
22
Sadly I think I agree Firecatcher with you it’s a very mixed up situation to have to tell someone that’s just doing a job that doesn’t experience our life just really how it is. I have found this very very hard taking to a total stranger that’s doing a job. The thing I find if I was on the out side looking in and not loving it I could say it like it is but the exhaustion and the heart brake doesn’t make for the same mind set to say it as it is if you see what I mean. I could fight anyone’s battles but living it myself I feel I can’t fight for me x
 

Grannie G

Volunteer Moderator
Apr 3, 2006
71,789
Kent
if someone says how are you my usual answer is yes fine thanks when really I feel like I am dying inside
The beauty of Dementia Talking Point is we can tell others how we feel and cry in private. I`ve shed many a tear on this forum and no-one knew. We may be strangers but we all have dementia in common and know full well the devastation, heartbreak and exhaustion we experience.

Even so, try to ask for help and take any help available

I could fight anyone’s battles but living it myself I feel I can’t fight for me x
Why is it so much easier to ask for help for others but not for ourselves? This seems to be a common practice with carers but if we don`t ask for help no one will know we need it.
.
 

jennifer1967

Registered User
Mar 15, 2020
698
The beauty of Dementia Talking Point is we can tell others how we feel and cry in private. I`ve shed many a tear on this forum and no-one knew. We may be strangers but we all have dementia in common and know full well the devastation, heartbreak and exhaustion we experience.

Even so, try to ask for help and take any help available



Why is it so much easier to ask for help for others but not for ourselves? This seems to be a common practice with carers but if we don`t ask for help no one will know we need it.
.
i think that there is an expectation that ladies will look after their menfolk and is part of the contract like looking after children but if men do it it seems of epic proportions. a generalisation not something i agree with and carers tend to be givers not takers. and have plates spinning all over the place.