Help for carers

[deez_swarb]

Hi, i dont know if i have posted in the right bit as it is my first time on here. But i am after a bit of advice please.

Just over a year ago my uncle was diagnosed. My auntie has become his full time carer. Although he is no means in the later stages of the illness he is getting worse at quite a noticeable rate.

I feel that my auntie is struggling to cope and isnt getting the support she needs from her sons. I have said i will go to a support group with her and im in the process of trying to find out the times and dates of our local one, with out much success, but i wont gice up on the idea.

Anyway, my auntie found out that me, my mum and sister plan on going on holiday next year and she has asked if she can come as she sats she just needs a week off from looking after my uncle. Which i completely understand. She has said that as her sons dont seem willing to help care for their father while she is away then she will sort out some kind of restbite care for my uncle whether it is going into a home or having carers come to visit. She says that she has spoken to my uncle and he is fine with it.

However her sons are adamant and have said that there is no way she can go on holiday with my uncle the way he is. And that she will just have to wait.

Unfortunately i disagree quite strongly with this and feel that my auntie needs a bit of a break just for one week. I know she is finding it hard and feel a week to recharge her batteries would do her the world of good.

As i am none the wiser what is the best thing to do in the situation, and whether going away and putting someone in to restbite is seen as not beneficial and not advised. Or if it is advised, i was just wondering if someone with more experience of alzheimers and what is the best thing to do, could advise me whether it would be good for my auntie to get away for a week or whether that week that she is apart from my uncle would have a very damaging affect.

I just want to support my auntie and do what is best for her and my uncle. But im am pretty clueless as to what will be for the best and what wouldnt.

Thankyou for reading and thank you in advance for any advise. Also sorry about all the typing errors.

 

[Wolfsgirl]

How lovely for your aunt to have you thinking about her welfare as it appears her sons do not!

If your cousins prefer him to stay in his own home, then how lovely it would be for them to be hands on with what they think is best for him. It might also give them valuable insight as to why she needs a break.

Suggest your aunt has a carers assessment too? It might make the family take more notice if they realise that all full time workers, including carers, deserve so many days annual leave!!!

You are doing the right thing, good luck x

I hope you have a lovely holiday but it must be

 

[Beate]

Of course your Aunt should be able to go on holiday! If she works herself into the ground she will be of no use for her husband and THAT will be detrimental for him too. Tell her to get a carers assessment that will quite clearly identify her need for respite and then she can look into booking this. It is quite irresponsible of her sons to not help with the care but to stick their oar in when she can't do it on her own anymore. It is not up to them to decide when she goes on holiday! There should be a care package put into place for him so she doesn't have to do the lion's share anymore.

 

[Katrine]

Hi there. I agree with Wolfsgirl and Beate. In fact, why wait until next year? I suggest auntie plans a short break this year, perhaps just a weekend, and her sons can cover looking after their dad, to see what it's like. By next year his needs will be greater, so a trial run now will give everyone a chance to get used to the idea of auntie having regular breaks, including uncle. Bless him for caring about his wife, while the boys seem not to care so much. It is shameful when she's brought them up and has given them so much love and care.

Respite is for the carer. Without respite there is a real risk to her health. What will the sons do then? It is tempting to say to them "put up, or shut up". And, she'll just have to wait until what, exactly? Until she has a breakdown? Until they decide it's time for residential care? Until he dies and auntie is released from being his unpaid carer?

I suspect that money plays its part here. Perhaps they don't want her to get the idea that it's OK to spend some of their own money on their own needs.

 

[Wolfsgirl]

The chat room at 12 is on holidays. I agree with katrine, short breaks very soon sound good even if just to have a girlie weekend in with you and your Mum and a bit of pampering thrown in!

Hi there. I agree with Wolfsgirl and Beate. In fact, why wait until next year? I suggest auntie plans a short break this year, perhaps just a weekend, and her sons can cover looking after their dad, to see what it's like. By next year his needs will be greater, so a trial run now will give everyone a chance to get used to the idea of auntie having regular breaks, including uncle. Bless him for caring about his wife, while the boys seem not to care so much. It is shameful when she's brought them up and has given them so much love and care.

Respite is for the carer. Without respite there is a real risk to her health. What will the sons do then? It is tempting to say to them "put up, or shut up". And, she'll just have to wait until what, exactly? Until she has a breakdown? Until they decide it's time for residential care? Until he dies and auntie is released from being his unpaid carer?

I suspect that money plays its part here. Perhaps they don't want her to get the idea that it's OK to spend some of their own money on their own needs.

 

[deez_swarb]

Thank you so much for your help every one.

I wasn't sure if I was making the right decision in thinking that a holiday would be good. And wanted to get the advice of people that are of have been in the same situation.

Unfortunately her sons have already made it quite clear that they will not be able to help look after my uncle if my auntie went away for a week.

However they have also said that they will go mental (their exact words) if my auntie was to put him into rest bite care.

So really it is making everything a very difficult situation.

I did see that the live chat today was about holidays but unfortunately my daughter has swimming lessons on a Monday so I couldn't get online to do it.

I do like the idea of going away for the weekend with her. Maybe on a spa weekend, just the girls, might make her sons realise just how difficult it is to look after my uncle.

Could someone please explain a bit more about a carers assessment and how to get one of them.

That way I can explain it a bit more to my auntie and uncle.

I go to there's once every two weeks to just help out and give my auntie someone to vent her frustrations at. Unfortunately due to work and my daughter I am not able to over more than that. However I have suggested to her sons that if they done the same then at least she would get a bit of help at least once a week if not twice. They have said that they are not able to make that type of commitment though because of work and their own family commitments.

Once again thank you so much for your help and advice. Means alot.

 

[Wolfsgirl]

How selfish they sound - your poor aunt will probably go 'mental' if she doesn't have some respite but that is ok with them I suppose! Your aunt needs to contact the GP and it is also to ensure your uncle gets the best care possible.

Copied this from the Alzheimers Community Care page, your aunt would benefit by joining this forum too I am sure:

What will the assessment involve?

The purpose of the assessment is to find out what the person's needs and circumstances are, and what support they need. It is good practice for individuals and their carers to be fully involved in their own assessments and care planning. The person seeking support should be at the centre of the decision-making process that determines what services they need from the local authority and how their needs will be met. This is referred to as 'personalisation'.

The assessment may include finding out about:
•the person's present living arrangements, and arrangements for care
•the person's health and disabilities, and what they can and cannot do
•the person's worries, and how they want to be supported; this may be giving details of the types of service sought and how they want the support to be arranged
•the concerns of any carers.

It may help to write down any important points before the assessment.

Assessments may involve a professional person who will visit the person and any carer to establish what needs the person has. The person may be asked to complete a questionnaire about their needs, which is often called a 'self-assessment' and can be part of the process of a fuller assessment. People with dementia can be given assistance when filling in self-assessment forms, to ensure that all of their needs are considered.

A single assessment procedure ensures that older people's needs for community care services, health care and any other services, such as housing, will be assessed using just one procedure, although it may be spread over several visits. This should lessen the need for repeat assessments and for the same questions to be asked by different agencies. It should also enable professionals from different backgrounds to get a fuller picture of the person, and to work together closely to ensure that the person receives the best possible care.

Where will the assessment take place?

The assessment is often carried out in the person's home, as this gives a clearer picture of how they are coping and what support they need. If the assessment is arranged elsewhere, it should be somewhere that is convenient for the person being assessed and for their carer.

And:

Who can have a carer’s assessment?

Anyone who provides or intends to provide a substantial amount of care on a regular basis has a legal right to a carer’s assessment. Once a carer has requested a carer’s assessment, the local council has a duty to carry one out.

Note: No definition of ‘substantial’ is given, so if you feel you devote a lot of time to caring for someone and you do this regularly, you should meet this condition. Even if you do not provide a lot of hours of care, you can still have an assessment if your caring role has a big impact on your life.

If you share caring responsibilities with another person, or more than one person, you can each have a carer’s assessment so long as you are each providing a substantial amount of care on a regular basis.

You don’t necessarily have to live with the person you are looking after or be caring full time to have a carer’s assessment. You may be juggling work and care and this is having a big impact on your life.

If you are a carer aged 16 or over you can have a carer’s assessment to look at the help that you need, even if the person you look after does not want to have an assessment to look at the help that they need.

 

[deez_swarb]

Thank you once again.

I have told my auntie she should come onto this forum but she seems a bit reluctant. I think it is a bit of not being that good at technology etc and also shyness of speaking to people on a forum. She's never done it before.

I have told her that I will go to a support group with her because even though she knows I will support her 100% just like her it is also the unknown for me and she needs to speak to someone who knows what she is going through.

Unfortunately I have sent two emails to an email address I found on the alzheimers society website asking about groups in our area and haven't had a reply from either of them.

But I will certainly speak to her about the carers assessment when i go round next week.

Thank you for you help. I just want to give her as much support as possible. As she is finding it all very hard.

 

[Wolfsgirl]

Please keep posting on here as your experience (with your aunt) could well help someone else...

Good luck to you all x

 

[deez_swarb]

I am also concerned that her sons will thing I'm sticking my nose into something that doesnt involve me and just making the situation worse. Which I don't want to do.

 

[Wolfsgirl]

To be honest, in my opinion you seem to have her best interests at heart. I am not sure whose interests they have, neither their Mum or Dad. Dad is happy for Mum to have a break - where is their problem coming from? I think they may actually feel guilty - they should!

You are fact finding for your aunt - maybe involve your Mum more in actually passing on the info to aunt (feel like calling her Cinderella as they want her to stay home and do all the work!) They may be less likely to challenge their Mum's sibling!

What does your Mum think anyway?

 

[deez_swarb]

My uncle is my mum's brother. So my auntie is her sister in law. However my auntie and her get on brilliantly and are more like sisters.

My mum feels the same way as me. She feels that my auntie needs a break and that her sons are not being very supportive.

She says she wants to say something to them both about how they need to buck up their ideas and support both my auntie and uncle more, especially as one of the announced at the weekend that they are looking to move abroad in a couple of years. But she is also worried about causing a massive family argument with my auntie and uncle being stuck in the middle. Not something that they need right now.

 

[Beate]

So they want to move abroad but still have an input on when your Aunt goes on holiday? Are they for real? Maybe a charity worker/social worker or GP can sit them down and explain to them in unmistaken terms about what caring does for someone's health unless that person gets respite now and then. Do they want to lose their mum soon as well?

 

[Kevinl]

Hi Deez
If you put a geographic location in you may get more info from someone local, not your address or anything but a town, city or whatever. What's available varies so much by location there's no point in me telling you what's available in Salford if you don't live there, however, there may well be someone local to you who knows where the support groups are. Just sa thought.
K

 

[deez_swarb]

thanks, will put a location.

thanks for all your help everyone.

some of the concerns her sons have id that if my auntie puts my uncle into restbite for a week, that he will deteriorate so much faster and that it will do him no good at all. ghey alsi feel that my uncle will nit remember who my auntie is when she gets back.

They feel it will do more harm than good to my uncle.

 

[Beate]

Everyone is different but generally people settle very well in care homes and one week should not make someone forget who someone else is!
And just a thought, if they don't want to be forgotten themselves, they ought to show up more!

 

[clareglen]

I've had my mum in twice for respite. Not many homes do bookable respite as some only do it when they have a spare bed. I've thought about live in carer/carers visiting but that is more expensive than respite in a care home & I think it is better piece of mind for myself/your auntie to know the person is in a safe place. If your uncle/aunt is self funding then it is more straight forward booking into somewhere on a private arrangement basis. However, I find the whole process quite stressful, packing for them, what they'll need etc., etc., getting them ready, calming them down and find it's not worth it for a week so always book her in for at least a fortnight.

 

[deez_swarb]

Thank you everyone.

My auntie has said that as she has spoken to my uncle and he is fine with it she is just going to book the holiday and if her sons dont like it then tough.

I have told her that I dont think thats the best way to do it as it is going to cause problems betweenher and her sons at a time when she needs their support the most.

I feel its going to cause big problems as she is adamant shes going and her sons are adamant shes not to go.

I just wanted to speak to people that are in the same situation as my auntie and get their point of view as to whether a holiday for my auntie would be beneficial to her but also whether it would or wouldnt be too detrimental to my uncle.

Just wanted to find out from people that know whether they would advise against my auntie going away without my uncle.

 

[Beate]

I think your auntie is right in standing up for her rights of respite. She is going to have a problem with the sons either way and I don't see why she should let them bully her like that. If she waits until they come round to her way of thinking she might wait a long time.