Helping my mother

[ben goulden]

Hello, I wondered if anybody knew the best way to help my mother who is becoming increasingly depressed looking after my father.

He was disgnosed with alzheimers 2 years ago and has reached a stage now where he is so forgetful that he can't be left on his own for more than an hour at a time.

My mother is very distressed by his behaviour and is finding copeing on her own with him very lonely and difficult. I am getting phone calls from her most days crying over something he has done (throwing away important papers of hers, finding him drinking wine at 11am in the morning, refusing to leave the house to see the doctor, etc).

I think perhaps it would help her if I could arrange for a private carer to come in a few times a week to spend time with him and let her have some time off. It would hopefully also be of benefit to him as he is somewhat lacking in stimulation having lost interest in reading and watching tv.

Does anybody know if such a thing exists in south west London?

Any advice much appreciated.

I'm desperate to improve both of their qualities of life and think if i could find some relief/help for my mother she would cope far better with the periods when she has to look after my father.

I am doing what i can at weekend's but I have realised recently that this just isn't enough but with the long hours i'm desperate to find another way to help.

Many thanks in advance for any advice.

Ben

 

[DozyDoris]

Hi Ben, welcome from me. Have a look at the Carers UK web site and also Crossroads. Carers UK will probably have a local branch to you, through our branch in Suffolk we can get an amount of respite care for free each year. Crossroads provide respite care and are another charity. There is also an emergency plan that you can complete(contact Social services for a pack) so that if your Mum was taken ill then there is something in place to get someone to your dad.
There will also be hopefully a local Alzheimers Society branch, they can come out and talk to you and your Mum and offer support and advice, again we are lucky, ours is really active and has a De Cafe social morning once a week for carers and carees and once a month an evening just for the carer.
Hope this is of some help,
Jane

 

[sussexsue]

Hi Ben

You are spot on with realising what she needs. I can tell you that as a carer what we all want is a little time to ourselves, not having to worry about the person we care for.

Has you mum looked into Day Care for your Dad. Just a few hours a week of freedom means a lot. It sounds as though your mum could really do with a break, just to get her head straight again.

Sue

 

[ben goulden]

Thanks for your reply.

I agree day care is exactly what she needs and I've found our local Crossroads group.

The difficulty I have is trying to persuade her to go and see them and ask them for help. She's really not dealing with the idea of having to care for my father at all and she's also quite a private person and doesn't like the idea of going to a group meeting - which is what crossroads seem to suggest.

Do you or anyone else know if there are private carers who I could pay to come and look after my father for a few hours who specialise in helping/looking after people suffering from dementia? I think it would help if she felt that whoever was coming in was offering some kind of therapy/support for my dad rather than just sitting with him - which I've no doubt he will find very odd.

Kind regards
Ben

 

[terry999]

Hi Ben

Have you tried contacting Admiral nurses - they are a good source of info of local services like day centres etc.

I can vouch for sussexsue's post. Even if you can stay with your Dad for a short time, its really good for your mum. Anytime when you knwo you don't have to worry becuase you know they are safe is such a great feeling.

 

[Grannie G]

Hello Ben

I had a private care agency to look after my husband and the carers were excellent.
This agency works on a Franchise principle so the quality of the care depends very much on the owners of individual Franchises. But it`s a starting point.
I will PM the link to you.

 

[maryw]

I have PM'd you.

 

[Sandy]

Hi Ben,

Welcome to Talking Point from me too.

You can use the website of the Care Quality Commission (CQC) to search for domiciliary (home care) agencies with in a specified range of a post code:

http://www.cqc.org.uk/registeredservicesdirectory/rsquicksearch.asp

You can then read the inspection reports online as well.

Your mother might also want to investigate services for people with dementia and their carers from the local branch of the Alzheimer's Society:

http://www.alzheimers.org.uk/site/custom_scripts/branch.php?area=true&areaCode=EALO

The Alzheimer's Society also has a great selection of fact sheets:

http://www.alzheimers.org.uk/site/scripts/documents.php?categoryID=200137

At some point, your mother might want to have a community care assessment:

http://www.alzheimers.org.uk/factsheet/418

Are you generally happy with the care that your father is getting? Is he on any medication for dementia?

Take care,

 

[ben goulden]

Thanks Sandy and everyone else for your replies.

The care my father has been getting has generally been fine. We are paying for medication that's not available on the NHS (not sure of the name). But it's hard to tell if it is making any difference.

The issue we had was the original diagnosis which took over a year. We went from hospital to hospital and only accidently discovered that an AZ specialist was literally around the corner from us. Once we insisted on seeing him we started to get a decent level of care/advice.

But I can't help thinking that had the various doctors that we saw been a bit more alert to the onset of AZ then my father's detoriation could have been slowed down. It was very obvious to both myself and my mother that his problems weren't related to high-blood pressure which is what we were frequently told.

Anyway I'm sure this story has been told a hundred times on this forum.

I'm sure if I'd have come here earlier then I'd have been more equipped to deal with it

 

[Clive]

HI Ben

I think you did very well in getting your father diagnosed in just over a year. For many of us it took far longer.

I just wondered, after reading your posts, whether you have asked Social Services if they would assess both your dad, and your mum as his Carer ? Whilst they do have financial guidelines to work to they can offer you some help and guidance and do have knowledge of the various Care Agencies operating in the area.

You probably will have already organised the Attendance Allowance Benefit for your dad, and the Council Tax reduction. I found that receiving these payments helped me, just a little, to feel that I, and the State, were doing something for mum.

I used a private Agency who I organised myself after obtained contact details of the available Agencies from Social Services. When the boss came to do the assessment I specified that, to start with, I wanted someone to come and give me, the Carer, respite. What I wanted was for someone to come and interact with my mum. I specified that the visits should be either one or two hours each, as I thought less would not have any benefit for anyone.

When I started, several years ago, I insisted that the Carers did not wear a badge as this upset my mum. Possible with all the Health and Safety legislation this is not now possible but I found it was the only way mum accepted help.

I also spoke to the Agency manager each week to confirm when I wanted the Carers and used the opportunity to praise the Carers who were good, and refuse the Carers who did not work to my standard.

Best wishes

Clive

 

[ben goulden]

Hi Clive, I haven't contacted Social Services yet as I'm still in the process of persuading my mother to accept help in looking after my father.

I wasn't aware of an attendance allowance or a reduction in council tax - how does that work?

It sounds like I need to go down a similar course to you and the information you've given me is a big help.

Thank you!

Ben

 

[wdfortyplus]

Restbite

Hiya Ben,

Get in touch with social services. They should be able to advise you on further support for your mum being a fulltime carer.Also equipment if needed what is available etc;
There maybe restbite on offer. Not always.

Is a good start if you get extra home help for your dad. This will help your mum a great deal. As it's another individual to speak with for a short time and is an extra set of hands with helping out with personal care etc;

Even if it allows your mum an extra free ten minutes to herself; it will be most welcomed.

Keep in daily contact with your mum. It's good to hear a friendly voice. Even if it is just 'listening'... it's giving your mum that time to 'talk'.

http://www.dementiacentre.com/cpage-34-0-memory-aids.html

follow this link and look at ASSISTIVE TECHNOLOGY. Can be downloaded PDF file.

This can perhaps give some help also.

Hope this is some help.

 

[Clive]

Hi Ben

Attendance Allowance is a None Means Tested Benefit that is available to anyone who needs help in say dressing or bathing or anything like that. (One major point put on mum’s application was she wandered back through the park with her pension in her hand and didn’t understand the risk). The person just has to need help… not actually be receiving help.

Read all about it and download an application form at

http://www.direct.gov.uk/en/DisabledPeople/FinancialSupport/DG_10012438


Note that you have had to need help for 6 months before it is payable. Many of us find that our loved ones have needed help for far longer than 6 months but we were never told about the benefit… so just remember to put down the earliest date the help was required.

Most people find it is helpful to get someone like Age Concern or a Social Worker to fill in the form because they use the proper wording. Remember to say just how bad the situation can be.

Once you have got BOTH a diagnosis for dementia AND (a Benefit like) Attendance Allowance you need to get a form from the Council which will be called something like “severely mentally impaired exemption”. You fill this in and return it to the Council and that person is no longer counted for Council Tax. In your case (where both mum and dad live in the house on their own) I believe that means a reduction of 25%, whilst if the person with dementia is living on their own then no Council Tax is due.

Best wishes

Clive

 

[Clive]

Hi Ben

Whilst I was slightly different to you in that I was seeking help for mum because she was the one with dementia, I always found that it helped to phrase everything so that it seemed I was on mum’s side, or I was doing it because mum wanted me to do it.

We were talking to SS so mum was prepared if anything happened (like me being knocked down by a bus, or I was taken ill and could not take her to the butchers… which was her chief dementia orientated concern).

Whilst I never got the help from SS that, as a Tax Payer, I though I should receive, they did point me in the right direction.

When they came to assess both mum AND me as a Carer I was careful not to criticise what mum was doing as she was scared of the SS… it was a balancing act.

Unlike most Carers I found it easier to look at mum’s Care needs as a JOB, and went about it in the same way as I would have organised refitting the kitchen or trying to sell something to a difficult customer without becoming annoyed at their odd ways.

We all eventually find the best way to carry on.

Best wishes

Clive

PS Do keep posting. There is always someone who can help.

 

[Amber 5]

Hi Ben,
Just to add to Clive's info on Attendance Allowance - there is a lower rate and a higher rate. To be eligible for the higher rate the person has to need help during the night, i.e. if they get up or go out during the night; or if they need toileting during the night etc.

Make sure you include as much detail as possible on the forms, no matter how simple it might seem, it all counts.
Best Wishes,
Gill x

 

[ben goulden]

Many thanks for all your advice, it is a big help.

Ben

 

[bongo62]

Sitter Service

Hi Ben

My mother uses the Sitter Service from Age Concern in her local area. It is a voluntary service and the priority is to allow my mother to go to medical appointments, however if they can they will come and sit so that she can just go off and have an hour or 2 for herself. It has been very hard for her to accept help from anyone especially a stranger but it has helped and worked well.

Best Wishes

Ali