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1

Hi,

New to the forum and just need to communicate with someone.

I’m 53. My husband is 55 and has cerebellar ataxia, which is a slowly neurodegenerative disease likely to be genetic. He also has mild learning difficulties and he also is very short tempered and has no patience at all. Our 12 year old son has moderate learning difficulties, autism and multiple food allergies, and attends a special school. He is also very prone to sickness. He has had several days off school already this year, because in addition to days off from sickness, they have a 48 hour policy which means every time he vomits he is off for 2-3 days.

In addition, my mother’s health is very poor. She was born with a heart condition which has been operated on in her adulthood, but now is not possible to operate on further, so she has heart failure. She is very unsteady on her feet and very breathless, but refuses to use a suitable walking aid. My father has (undiagnosed) autism and is quite inflexible in every way, although he is doing his best with my Mum. My only sibling lives overseas and I’m an hour’s drive away, but am expected to visit for several hours every week, which is difficult to manage as I can only do it during school hours, when I should be working.

I have suffered from depression and anxiety for many years, including emetophobia (fear of sickness) which makes it extremely tough to deal with my son’s frequent illness, particularly as my husband is no longer able to assist due to his own increasing physical disabilities, added to his learning difficulties.

I’ve been looking after my husband for several years now, with the support of a PA, and until recently was working out of the house full time. I now work for a company in London, but the amount of time I was having to take out to deal with my son’s frequent sickness, school meetings, looking after my husband when he was sick etc put my job at risk, and I agreed to a “minimum hours” contract in order to remain employed. This involves working from home a lot of the time instead of travelling to the office. While it sounds brilliant and flexible on paper, in practice it makes home feel like a prison, and there is the threat of my husband’s direct payments getting reduced as a result. Plus, and not least, it means our income is unpredictable as the number of hours I work varies hugely. I have no-one to talk to all day, except my husband and son, and their conversation is very limited.

My husband, very admirably, continues to have an active life even though he is now a wheelchair user. He has a PA/carer who takes him out to all his various activities. If we lose his PA hours, my husband will have to give up his activities as I can’t take him out during the day and evening, and work, and do everything necessary for our son. Working from home is still work and can’t be done with the number of interruptions that would be needed if my husband were continuously here. My husband’s learning difficulties mean I have to deal with all paperwork, fix the computer when he clicks on something dodgy, show him over and over and over again how to do things. He is also not able to occupy himself for very long, gets into difficult situations if he goes out on his own, and is unable to plan ahead. So when he’s at home (e.g. when he is ill), I am constantly interrupted. Even when he’s well, if I ask to have 30 minutes to myself, he will agree but then call me after 5 minutes. He has no patience so if I don’t immediately respond or ask him to wait, he simply attempts to do whatever it is on his own, and sometimes that means he falls or breaks something. The irony is that people who regularly see my husband out socially don’t see the difficult side of him at all, just the friendly face. It’s only my son, myself and my husband’s PA that sees the “real” him. The current PA is one of the most patient people I have ever met, but even he struggles to deal with my husband at times.

We have no support for our son and have been told he’s not eligible as he gets enough support from school and from me. I can just about manage as things are, but if we lose my husband’s PA it will be a nightmare. No breathing space at all.

Being someone who is not in any way a natural carer, who is squeamish and struggles dealing with illness even at the best of times, it feels like a living nightmare, and it’s just so incredibly lonely.

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I take my hat off to you. I moan about my mum with mild/moderate dementia but that is nothing to what you are coping with.

I am going to confine myself to work aspect, others will no doubt be along to talk ‘directly’ about your caring responsabilities.

I wonder if you could go elsewhere nearby on occasion to work while your boy is at school and your husband’s PA is with him? This might mean you could prioritise tasks that need full concentration to those periods. Nearby me there is a social enterprise that charges 20/hr (so I understand) for a hotdesk. Even if that was out of question finding a quiet cafe with WiFi (most them have it these days) might be an option?

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Hi Deborah,
Welcome to the forum.
I recommend changing your username to just your first name or to a pen name to protect your and your family’s privacy.

You certainly have a lot to deal with.

I had the same thought as G Fraser; work in a wifi cafe/ the library or somewhere like the social enterprise mentioned. Definitely get out of the house.

Can you afford a cleaner, even for two hours a week to take buy you a bit of free time?

Re your hubby, it sounds like he has a good quality of life despite his condition and frustrations.

Do your Mum and Dad receive any help, other than from you? I really don’t think you can be supporting them too, beyond the normal daughter role e.g. occasional visits and telephone calls.

Unless the vomiting is not due to a bug, my school has the 48 rule over sickness and diarrhoea too. it’s a measure to try and stop other pupils catching the bug. Does your son attend any clubs or playschemes - " short breaks?" Your son’s school should know what is available in your area.

Melly1

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Hi Deborah
Being new you may not have come across the concept we have on here called “becoming the Care Manager, not the carer”. It works well in multiple caree situations or where there is distance to caree.
Essentially you stop doing the carer role and jobs and become the Care Manager, that important and central person who oversees and arranges care and paid Carers. You aim to make sure that the carers NEEDS are met, and only when they are do you see if some of their WANTS can also be met.

In other words you get tough, prioritise and say NO more often, especially with parents because of the distance. When prioritising you also consider your needs, especially around work, finances and stress
Make a list for each person of what they actually need and how it can be provided (not by you!) .
Consider delegating to sibling abroad, much can be done by internet now such as online supermarket shopping for parents, contacting social services, managing finances etc.
With so many carers you will have to make full use of external help, whether that’s paid for or via Social services. You may have to fight to get what you need, so allow time in the plan for that too.

With so many carees it is a big task a and may seem daunting, but break it down into smaller, prioritised chunks, ticking them off as done and you will start to feel less stressed and more in control.

Such a grand plan won’t always work, but it’s better than being pulled in every direction willy nilly

Good luck
MrsA

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Hi Deborah, I’ve been a multiple carer, all four parents old and disabled and a brain damaged son. So tough.
The only way things can change is by you making yourself less available, while you do the running around, no one else has to.

I had counselling to help me manage my mum better. She still expected me to do jobs for her when I was newly widowed, newly disabled, waiting for two knee replacements when I was using a walking stick!!

Counselling will give you some outside support which will be really useful, especially to help you work out priorities. For example, with the support of the counsellor, I decided my son came before mum, as he couldn’t speak up for himself, she could. I told mum, she didn’t like it of course, but couldn’t say her needs were greater. So she had 3 carers a day, a gardener and a cleaner/odd job girl to do what she needed. I dealt with her finances and odd jobs that the others couldn’t do.

Start with the basics, have husband, son, mum and dad all had Needs Assessments from Social Services in the last 12 months?
When did you last have a Carers Assessment?