Expert Q&A: Living well as a carer - Thursday 29 August, 3-4pm

[SophieD]

As a carer for a person living with dementia, the needs of the person you care for will often come before your own. You may experience a range of difficult emotions and you may not have the time to do all the things you need to do. Caring can have a big impact on both your mental and physical health, as well as your overall wellbeing.

Looking after yourself means you will be in a better position to continue to care for the person affected, and keeping yourself healthy – physically, mentally and emotionally – can also help you to have a better relationship with them.

Our next expert Q&A will be on living well as a carer. It will be hosted by Angelo from our Knowledge Services team, who focuses on wellbeing. He’ll be answering your questions about how to look after yourself and what support is available for you on Thursday 29 August between 3-4pm.

Don’t think you’ll be able to make it? Feel free to post your question on this thread, or if you prefer you can send your question to talkingpoint@alzheimers.org.uk and we’ll be happy to ask them on your behalf.

We hope to see you here on Thursday

 

[DesperateofDevon]

Hi I’m trying to help my mum get a diagnosis but with her fluctuating capacity it’s been problematic.
Mum does great hostess mode but care team have now raised concerns citing Lewy Bodies.
Hopefully things will progress now!

 

[Jinnyn]

I care for my husband with dementia. I myself have an liver condition and I don’t have much energy. This last week my husband has had a urine infection which has caused him to soil the bed on numerous occasions. I have had to wash bedding all the time. When he’s like that I can’t get him up to go to the toilet because he hasn’t got the energy and also he doesn’t understand what I want him to do. I have bought inconcident pads but it’s a struggle to get them on him. He has me worn out

 

[SophieD]

Thank you to those who have submitted questions so far! We have received the below question via email...

"Why is there no automatic right to care in the week? Why have I had to spend hours on phone, surfing the net, being neglected by GP with a pittance paid to Carers to get just a smidgen of help. There is more money invested in the provision of information (with pictures of happy people) rather than investment in physical support.

I am looking after a person who has gone with no thanks, worn out, frustrated, harassed and totally neglected. There are laws about the workplace so I do not understand why as a carer for a relative it is allowed to be 24 hours a day, 7 days a week, with no leave or sick leave."

 

[SophieD]

Another question that's come in via email...

"I thought I would try a short break with my Husband. We hadn't been away for 6yrs. Our Daughter & two Grandchildren (12 & 15) came with us & we shared a caravan as we took our two little dogs. We were an hour drive away from home, so I could bring him home if it unsettled him. He was fine. I even thought maybe we could chance a week in our beloved Cyprus. We spent a lovely 4 days, lots of fun, laughter & lovely memories. However, since we got back 2wks ago, he has been so confused. He wants to know when we're going home, how long are we staying here & imagines our 12yr old Grandson is in the house. I don't think I would go away again.Thought I would warn carers in case this is the case with your loved one."

 

[DesperateofDevon]

As a carer for a person living with dementia, the needs of the person you care for will often come before your own. You may experience a range of difficult emotions and you may not have the time to do all the things you need to do. Caring can have a big impact on both your mental and physical health, as well as your overall wellbeing.

Looking after yourself means you will be in a better position to continue to care for the person affected, and keeping yourself healthy – physically, mentally and emotionally – can also help you to have a better relationship with them.

Our next expert Q&A will be on living well as a carer. It will be hosted by Angelo from our Knowledge Services team, who focuses on wellbeing. He’ll be answering your questions about how to look after yourself and what support is available for you on Thursday 29 August between 3-4pm.

Don’t think you’ll be able to make it? Feel free to post your question on this thread, or if you prefer you can send your question to talkingpoint@alzheimers.org.uk and we’ll be happy to ask them on your behalf.

We hope to see you here on Thursday

I know I’m not alone in this, & it does help but understanding & accepting this is how things are ..... it’s not palatable.

 

[SophieD]

Another question for the Q&A which has come in via email...

"My wife diagnosed 3 year's ago probably had it 2 years before being diagnosed .she can not walk very well and im struggling. Getting her a mobility scooter because she falls over .and i spend all day looking after her . I try to stay calm and happy .what is the best way to help her"

 

[Whisperer]

Grandad always said if you do not ask you will never know. Not sure anyone can help but I am having trouble with the increasing isolation and emotional demands my caring role is having. No single event just the daily drip feed of low level frustrations, the trying to plan how best to do things, the lack of social support, the underlying anxiety of what the future holds, etc.

Last week was a new low. I have read widely about dementia, attend a monthly care group on my own as my mum does not accept there is a problem, thought I was ready for some of the things to come. Men make plans and god laughs........ Sat watching the news and saw mum looking at me out of the corner of my eye. “I know you are watching this but can I ask you a Question?” Of course mum what is it? “Who are you? I know you are a son but which one?”. No emotional upset almost like can you pass the salt. That just made it all the more surreal. “I am Mark mum”. Mum thanked me and went back to watching the TV. Did that just happen or did I dream it?

No point saying get out more when all I do is take my concerns, etc, with me. Discuss with siblings but in reality they visit briefly once a week and do not really get involved, with mum certain there is nothing wrong it would be hard for them to do so. Read a book and I find it does not stick. Listen to a wonderful piece of music and it now sounds like a supermarket sales message on the tannoy. Life has lost its colour, the world seems increasingly remote and in places unreal. Days blur into one another. Then I read this forum, feel guilty when I see the woes of others and give myself a kick to do better.

My mum has aganostosia (hope I spelt that right) so is not in denial of her condition just fails to appreciate it. This week Barbara Windsor’s partner on TV talking about dementia. Mum states “it must be awful having that condition and for the Carers”. Vastly reduced my working hours, arranging medications, GP appointments, dentist, foot lady, assisting with showers, shopping, cooking, hospital appointments, but apparently not a carer. That sounds bitter and I do not want it to.

This is the reality of many Carers. Many have it far worse than myself. I fully understand the need to look after myself to care for my mum. Great advice but the social care system, health service, social workers, etc, seem to delight in creating extra stress and anxiety for Carers. I am shocked sometimes how little empathy or understanding of dementia there is amongst professionals.

So not sure if you can help? To stop the low level attrition before it builds into more substantial problems.

 

[Angibec]

Hi. My husband is 59 and has had memory problems now for 4-5 years and has had couple of scans which show brain shrinkage and memory tests which indicate below average on every category but as yet still not diagnosed with anything. His behaviour and memory is really bad at the present time. As his carer im finding it hard coping with it all and was
Wondering if there is any help out there for a carer of a person who hasn’t has an official diagnosis. My husband hasn’t actually been a great husband to me within the 30 years of our marriage and sometimes begrudge caring and it’s now at the point where I’m really finding it hard so would like some advice as to where I can go to next. Many thanks for any help you can give me.

 

[SophieD]

Good afternoon everyone, and welcome to August's Q&A on Dementia Talking Point. This month's Q&A will be on living well as a carer. Our very own Angelo from our Knowledge Services team has kindly given his time to answer any questions you may have on how to look after yourself and what support is available for you as a carer.

Over to you, @AngeloM!

 

[AngeloM]

Thank you Sophie. I'll take the questions you've already posted from the top of the thread, and will answer any others that come in as I can too.

 

[AngeloM]

Hi I’m trying to help my mum get a diagnosis but with her fluctuating capacity it’s been problematic.
Mum does great hostess mode but care team have now raised concerns citing Lewy Bodies.
Hopefully things will progress now!

Hi,

I’m sorry to hear that. It is actually quite common for people to appear less confused or appear to have less memory problems when health or social care professionals are around. This ‘hostess mode’ (which is actually a very good term for it) can then lead to the professionals being given a much less accurate picture of what is actually happening.

As you say, hopefully things will improve now that the care team seem to be looking at the possibility of Lewy Body Dementia. In the meantime, it might be useful to keep a kind of diary of symptoms, noting what types of things are happening and how often, as this can give any medical professionals a clear picture of exactly what types of symptoms your Mum is having. This might help in terms of getting a diagnosis.

Our Helpline is also available on 0300 222 11 22 if you’d like more information, advice or support at all.

I wish you all the best,

Angelo

 

[AngeloM]

I care for my husband with dementia. I myself have an liver condition and I don’t have much energy. This last week my husband has had a urine infection which has caused him to soil the bed on numerous occasions. I have had to wash bedding all the time. When he’s like that I can’t get him up to go to the toilet because he hasn’t got the energy and also he doesn’t understand what I want him to do. I have bought inconcident pads but it’s a struggle to get them on him. He has me worn out

Hello,

I’m very sorry to read about the difficulties that you’re having. It sounds like a very hard situation, especially as you have your own health needs too.

It sounds like you need much more support than you’re getting, and I’m wondering if social services are involved at all. If not, it might be useful to contact them to arrange a needs assessment, for both you and your husband, to see what support they can put in place. If they’ve already carried out an assessment, then you can also request a new one to get more help. As dementia is progressive and can be quite unpredictable, it’s absolutely fine to request a new needs assessment as situations change.

I’m not sure where you’re based, but we have more information on these assessments here:
England - https://www.alzheimers.org.uk/get-s...assessment-care-support-england#content-start
Wales - https://www.alzheimers.org.uk/get-s...l/assessment-care-support-wales#content-start
Northern Ireland - https://www.alzheimers.org.uk/get-support/legal-financial/community-care-assessment-northern-ireland

In terms of incontinence, the GP should be able to make a referral to a Continence Adviser, who should be able to give more advice around this. I would definitely suggest speaking with your GP anyway, as they may be able to contact social services on your behalf and/or mention any local schemes or support in your area. Caring for a person with dementia nearly always involves getting help and support from other places as it is too much for one person on their own.

You might also find it useful to contact our Helpline for further information and support too. They can be reached on 0300 222 11 22.

All the best, and I hope you are able to get the extra support that you need.

Angelo

 

[AngeloM]

Thank you to those who have submitted questions so far! We have received the below question via email...

"Why is there no automatic right to care in the week? Why have I had to spend hours on phone, surfing the net, being neglected by GP with a pittance paid to Carers to get just a smidgen of help. There is more money invested in the provision of information (with pictures of happy people) rather than investment in physical support.

I am looking after a person who has gone with no thanks, worn out, frustrated, harassed and totally neglected. There are laws about the workplace so I do not understand why as a carer for a relative it is allowed to be 24 hours a day, 7 days a week, with no leave or sick leave."

Hello,

I am very sorry for the situation you’re in – we know what the GP, social services, and other health and social care professionals are supposed to do, but we also know that sometimes in practice the support isn’t there. I’m also sorry that you’ve had to spend such a long time on the phone and online, chasing people up for support. It might be a good idea to contact your local MP to let them know about all of the problems you’ve had. They might be able to intervene and put some pressure on the relevant services to help.

I’m not sure if you’ve contacted social services (they may well be the people you are chasing up), but they do have a duty to carry out a needs assessment to look at how they can help. This should be done before any financial assessments, so that even if a person will need to pay for their own care, they will still have a care plan outlined which will allow them to know what type of care is deemed to be most suitable.

Another option is to speak to someone at your local Alzheimer’s Society office, as they can let you know of any local services or organisations who can help. If you look at our Dementia Directory you should be able to find your closest office - https://www.alzheimers.org.uk/find-support-near-you

Our Side by Side service might also be useful, as this could give you some respite, and you can find more information about that here - https://www.alzheimers.org.uk/get-support/your-support-services/side-by-side

In terms of the GP, it might be a good idea to try and either see a different GP in the practice, or speak with the practice manager. If this doesn’t help, you could move to a different practice altogether. The GP is usually the point of contact for a wide range of support services, and so it is important they are helpful. If they are not, then seeing a different GP could well give you more of the support that you need.

I would definitely recommend contacting our Helpline for more advice, information and emotional support. With more information about what is happening they may be able to make other suggestions about the type of help that might be suitable, and what other support you might be entitled to. You can reach them on 0300 222 11 22.

I wish you the very best with it, and I hope you’re able to get more support and help.

Angelo

 

[AngeloM]

Another question that's come in via email...

"I thought I would try a short break with my Husband. We hadn't been away for 6yrs. Our Daughter & two Grandchildren (12 & 15) came with us & we shared a caravan as we took our two little dogs. We were an hour drive away from home, so I could bring him home if it unsettled him. He was fine. I even thought maybe we could chance a week in our beloved Cyprus. We spent a lovely 4 days, lots of fun, laughter & lovely memories. However, since we got back 2wks ago, he has been so confused. He wants to know when we're going home, how long are we staying here & imagines our 12yr old Grandson is in the house. I don't think I would go away again.Thought I would warn carers in case this is the case with your loved one."

Hi,

Thanks for commenting and sharing your experiences. I’m very sorry that, after having such a lovely holiday, your Husband has been so confused since coming back. If it’s any consolation at all, there is some evidence to suggest that the memories that ‘stick’ are usually those which are associated with strong emotions, so it may be that your husband had such a nice time on the holiday and experienced so many positive memories that it has ‘stuck’ with him.

Holidays can occasionally be disorientating to a person with dementia, although this is usually more likely to happen on the holiday itself than when back home. In time, as your Husband adjusts to his regular routine and patterns, you may find that he is not so confused.

In the meantime, distraction techniques such as engaging your Husband in activities or hobbies he enjoys, might be helpful. Our information on ‘Telling the truth’ might be useful here, as this includes information on distracting someone if they are asking questions which are difficult to answer - https://www.alzheimers.org.uk/get-support/daily-living/making-decisions-telling-truth

As I’ve mentioned above, you might find it helpful to call our Helpline as one of our Advisers could talk you through the situation and give more specific advice on how to support your Husband and yourself at this time. The number for the Helpline is 0300 222 11 22.

I hope this is helpful, and I wish you all the best.

Angelo

 

[AngeloM]

Another question for the Q&A which has come in via email...

"My wife diagnosed 3 year's ago probably had it 2 years before being diagnosed .she can not walk very well and im struggling. Getting her a mobility scooter because she falls over .and i spend all day looking after her . I try to stay calm and happy .what is the best way to help her"

Hi Tony,

Thanks for getting in touch, and I’m sorry to hear about the struggles you’re having.

It’s difficult to say what the best way to help your wife might be without knowing a bit more about the situation. I’m wondering if the GP is aware of the problems your wife is having with walking, as they may be able to look into what specifically is causing these difficulties. If there is an underlying cause that can be treated, then this might help your wife regain some mobility.

Another option would be to speak to social services if you haven’t already. They can carry out a needs assessment, as I’ve mentioned to a couple of people above, which would look at helping both your wife and also yourself. They may also be able to arrange a visit from an occupational therapist, who can give advice around mobility problems. You can also contact an occupational therapist through the GP or hospital consultant. For private occupational therapists, you can contact the Royal College of Occupational Therapists.

A physiotherapist can advise on mobility aids, such as walking frames and wheelchairs, and on ways of helping someone with dementia to move safely. If your wife attends hospital, then you could ask to speak to a physiotherapist based there. Otherwise, you can ask the GP for a referral to the hospital physiotherapy department. For private chartered physiotherapists, you can contact the Chartered Society of Physiotherapy.

As I’m sure you’re aware, it can be a challenge to stay calm and happy when caring for someone with dementia, so it is important to get support for yourself too. Our website has information on this here - https://www.alzheimers.org.uk/get-support/help-dementia-care/looking-after-yourself So you might find that useful to look at in terms of looking after yourself too.

Our Talking Point community and our Helpline (0300 222 11 22) are also great sources of support and advice, so I would definitely encourage you to keep posting here and also give the Helpline a call.

All the best Tony, and please do get back in touch any time you need any more support.

Angelo

 

[AngeloM]

Grandad always said if you do not ask you will never know. Not sure anyone can help but I am having trouble with the increasing isolation and emotional demands my caring role is having. No single event just the daily drip feed of low level frustrations, the trying to plan how best to do things, the lack of social support, the underlying anxiety of what the future holds, etc.

Last week was a new low. I have read widely about dementia, attend a monthly care group on my own as my mum does not accept there is a problem, thought I was ready for some of the things to come. Men make plans and god laughs........ Sat watching the news and saw mum looking at me out of the corner of my eye. “I know you are watching this but can I ask you a Question?” Of course mum what is it? “Who are you? I know you are a son but which one?”. No emotional upset almost like can you pass the salt. That just made it all the more surreal. “I am Mark mum”. Mum thanked me and went back to watching the TV. Did that just happen or did I dream it?

No point saying get out more when all I do is take my concerns, etc, with me. Discuss with siblings but in reality they visit briefly once a week and do not really get involved, with mum certain there is nothing wrong it would be hard for them to do so. Read a book and I find it does not stick. Listen to a wonderful piece of music and it now sounds like a supermarket sales message on the tannoy. Life has lost its colour, the world seems increasingly remote and in places unreal. Days blur into one another. Then I read this forum, feel guilty when I see the woes of others and give myself a kick to do better.

My mum has aganostosia (hope I spelt that right) so is not in denial of her condition just fails to appreciate it. This week Barbara Windsor’s partner on TV talking about dementia. Mum states “it must be awful having that condition and for the Carers”. Vastly reduced my working hours, arranging medications, GP appointments, dentist, foot lady, assisting with showers, shopping, cooking, hospital appointments, but apparently not a carer. That sounds bitter and I do not want it to.

This is the reality of many Carers. Many have it far worse than myself. I fully understand the need to look after myself to care for my mum. Great advice but the social care system, health service, social workers, etc, seem to delight in creating extra stress and anxiety for Carers. I am shocked sometimes how little empathy or understanding of dementia there is amongst professionals.

So not sure if you can help? To stop the low level attrition before it builds into more substantial problems.

Hi Mark,

I’m sure a lot of people are reading this and recognising things they’ve felt and thought about being a carer. I think everyone who has cared for a person with dementia will recognise the surreal moments you describe, the stress, the anxiety, the juggling of work and other responsibilities with caring for a person you love, the seeming thanklessness of it all, and everything else.

There are so many things you mention that I’m not able to fully address them, but what I will say is that I would definitely consider speaking with a counsellor. As a carer, our time and entire lives often revolve around the person with dementia, which often leaves little room for anything else – which can include your own wellbeing. Having fixed sessions with a counsellor can be really helpful, as it gives you a dedicated time where you can talk about how things are affecting you. Speaking with someone outside of family or friends, in a non-judgemental and professional setting, can be a great help. You could speak to your GP about this, or you could also find a counsellor privately. A number of counsellors are increasingly using telephone or video-call counselling, and this can be a cheaper and less time-consuming option than travelling somewhere. Please take a look at our Talking Therapies information which goes into more detail about this – https://www.alzheimers.org.uk/about-dementia/treatments/talking-therapies

In the meantime, if you can it’s really important to make as much time as you can for yourself – even if this is snatched moments here and there rather than a long break. I’m not sure if you have friends or family around, but trying to get them involved can be helpful too. Talking Point is also an incredible community with a huge amount of people who really understand caring and the complexities of looking after someone with dementia, so I would definitely recommend talking to people on here as well.

Lastly, our Helpline is there if you need to talk. They can provide information and advice, but are also happy to be a listening ear and there just to give some emotional support too. You can get in touch with them on 0300 222 11 22.

I’m very sorry I can’t go through each point you’ve made here, Mark, but I hope this has been helpful and given you a few ideas of sources of help.

I wish you all the very best,

Angelo

 

[AngeloM]

Hi. My husband is 59 and has had memory problems now for 4-5 years and has had couple of scans which show brain shrinkage and memory tests which indicate below average on every category but as yet still not diagnosed with anything. His behaviour and memory is really bad at the present time. As his carer im finding it hard coping with it all and was
Wondering if there is any help out there for a carer of a person who hasn’t has an official diagnosis. My husband hasn’t actually been a great husband to me within the 30 years of our marriage and sometimes begrudge caring and it’s now at the point where I’m really finding it hard so would like some advice as to where I can go to next. Many thanks for any help you can give me.

Hello,

I’m sorry to hear that your husband hasn’t had a diagnosis yet. It sounds like he’s had memory problems for quite some time now, and coupled with the fact that the scans have shown brain shrinkage it does seem strange that a diagnosis hasn’t been made. It might be a good idea to try to chase up the GP or see if they can refer your husband to a different consultant or memory clinic for further tests. Even if they don’t think he has dementia, it is important they get to the bottom or anything else that might be causing the difficulties that he’s having.

It would be worth getting in touch with your local Alzheimer’s Society office to see if they can offer any support. Our Dementia Directory webpage can be found here - https://www.alzheimers.org.uk/find-support-near-you

You could also approach Age UK and carers UK to see wat local support they might be able to provide too. Age UK can be found at - https://www.ageuk.org.uk/services/in-your-area/ and Carers UK at - https://www.carersuk.org/help-and-advice

The point you mention about sometimes begrudging being a carer, and the previous difficulties you’ve had in your relationship, are definitely not uncommon. These can present additional challenges on top of being a carer, and can bring up a lot of complex and confusing emotions. As I mention to somebody above, counselling can be very helpful as it allows you explore the emotions you’re feeling with a view to trying to minimise the impact they might be having on you. This of course can’t change the relationship as it was and the challenges you’ve faced in that relationship, however it can help in terms of giving you coping mechanisms and a deeper understanding of situations that may crop up in future and ways to respond to them.

I would recommend calling our Helpline too, as this can be a good way of speaking to someone neutral (i.e not a family member or friend) about the way you’re feeling, and with more information they might be able to make other suggestions to help.

I hope this is useful for you, and gives you some options of what to do next.

All the best,

Angelo

 

[AngeloM]

I have repeatedly been told by SS (both on an Alz Soc training course for carers, and on individual enquiry) that because we are self-funding there is no point in them getting involved with us since the only outcome would be them giving me a list of all the care homes and agencies in the area and then leaving me to get on with it.

GP had no knowledge of care options etc and was not allowed in any case to recommend places because all care is privatised.

In the end - after five plus years of caring (and organising care) for my husband who has eoAD myself at home I trawled through care homes until i eventually found one who could take him.

So my questions are - why are we repeatedly told to get care/carers' assessments etc when SS reply as above.

How can I ever know (be reassured) that as a carer I have really done the best for my husband when neither SS nor NHS will advise me? (Both have been involved by the CH after admission for dols and for medication - but surely there should have been some professional advice before admission?)

Hello,

This does happen unfortunately, where social services say that there’s no point in them carrying out an assessment because a person is going to be funding their own care, but to be totally blunt this isn’t the case at all. Social Services have a duty to carry out a needs assessment when requested, and the needs assessment should always come before any financial assessment.

I can see that your husband is now in a care home that you’ve found, however for anybody else reading this who might be in a similar position it’s important to note that in a situation like this you can make a complaint directly to social services and, if they still don’t resolve things, then the next stage would be to take this to the Local Government Ombudsman. I know that making complaints may feel like additional stress at a time when you really don’t need any more – and, let’s be honest, it is - but in some situations unfortunately it might be the only way to move things forward.

In terms of the GP, as I mentioned earlier to somebody else, the option to change GPs or change GP surgeries might be the only way to get the care and support that you need. I completely agree that this shouldn’t be the case, but in some circumstances if a medical or social care professional is not doing what they should be doing, then sometimes the only real option is to make a complaint or move to someone else.

Unfortunately, health and social care is the same as every other industry in the sense that, sometimes, people don’t do what they should do or don’t know what they should know. I agree it’s not right, and can in fact be downright damaging given how high the stakes are to get things right.

As a carer, it’s important to remember that you can only ever do what you think is best at the time, with the information you have at the time. From the message you’ve written it’s clear that you’ve done everything you can to do what’s best for your husband, in spite of having limited information from social services and the GP.

If anything else comes up that you need more information about, then Talking Point is a great source of information and emotional support. Our Helpline Advisers are also there to give advice, information and support, so do give them a call if other queries or situations come up. You can reach them on 0300 222 11 22.

I wish you all the best.

Angelo

 

[SophieD]

And that brings us to the end of August's Q&A!

Thank you to everyone who asked a question, and a huge thank you to @AngeloM for your in-depth and thoughtful answers. We really appreciate it