What can be done to help my parents?

LegacyUser

I'm writing this post not for myself but for members of my immediate family, specifically my parents and my sister. She is in her early 40's now, but mentally she's probably more like a 6 year old. In addition to this she also has a range of physical impediments including a lack of balance, gaunt appearance and severe hearing difficulties These physical issues have manifested themselves in the past decade and have steadily increased in magnitude in tandem with a decrease in her mental faculties. When she was a child she was seen as just having a low IQ and managed to pass her Leaving Certificate. Even then though she was clearly child and in reality she never matured into an adult mentally. When she was 20 she was probably at a mental age of 13 or 14 and since then she's declined. In the intervening years she went through numerous entry level jobs. In almost each case she was dismissed and looking back at it she was probably never able for these roles. Eventually she ended up in a supermarket where she remained until earlier this year.

She never really had any friends. She never really had any hobbies. When she wasn't working she'd either watch TV, read books or go places with my mother. To be perfectly honest she was never especially pleasant or cheery. She was always extremely petty and bitter. She'd be quick to point out other people's faults. In fairness she got dealt a pretty crappy hand in life so perhaps this is understandable but it makes her difficult to like.

Anyway as I've already mentioned in the past decades her physical health has begun to deteriorate. As well as the previously mentioned issues she has developed chronic digestive problems and this is at the heart of the issue. To put it quite crudely, she ****s herself, all of the time. Not only that but she cannot clean herself properly when she uses the bathroom. She does not possess the co-ordination or wherewithal to use toilet paper properly and will often, it seems, neglect to attempt to clean herself at all. This issue led to her losing her job earlier this year and now she spends all day every day at home with my parents.

My parents are retired, that is to say they are no longer in paid work. A more accurate description of their lifestyle would be that they are full time carers. This is not a role either of them is suited for or enjoys. In fact they are miserable, frustrated and utterly fatigued . My father spends his days shouting at my sister and cleaning the bathroom after her latest visit. My mother is more patient with her but is constantly worn down as she has no free time of her own. My sister follows her around for the entire day asking the same questions over and over again. My mother knows that my sister cannot help it but this does not make it any less irritating. She also has the unpleasant task of washing my sister after each of her 'accidents' and cleaning the clothes and things in the house that she touches. My sister herself is utterly oblivious. When she is reprimanded she doesn't process it and just repeats her previous actions again and again. I believe my father shouts at her, not in the belief that she'll change her actions but to express his frustration at the fact that he doesn't know what else to do.

I have two other siblings. In truth, none of us knows what to do. We are adults with our own lives, full-time jobs and problems. In truth, none of us get on with our sister but we carry the burden of guilt of not being better to her and of more assistance to our parents. I am actually writing this post as a means of trying to help in some way.

So a few other facts. My parents have brought her to the GP who has just given her immodium tablets for the digestion issues. This is not a long term solution. After all what goes into a body has to come out eventually. She is also attending physical therapy once a week but it doesn't seem to be doing any good. She has been to several specialists including a neurologist (who mistakenly thought she had Huntington's disease) who essentially told my parent's "We may never realise what is wrong with her". It also emerged in scans that she had a smaller brain than average and so this is most likely something genetic. She is now waiting to be assessed by a clinical psychologist but this won't be for another few months.

I come out to visit them to take their mind off of things but inevitably all conversations end up back on this topic. What options are available to my parents to improve their quality of life?

Note: I am writing this after she walked into the kitchen with faeces on her hands and started grabbing the curtains because she wanted to put her hearing aids into their box on the window sill behind them.

tcif

This sounds like a very difficult situation for all of you, OP, and especially for your parents. At their stage in life (if your sister is in her 40's I'm assuming they're late 60's or into their 70's) they can't do this long term.

Your GP doesn't seem to have been much help but is there anyone else you can turn to for some help or advice? Maybe a local community nurse or social worker? Any care homes/services in your area who might be able to point in some direction to ask for help, either practically in the home or medically in getting your sister further assessed? I've never been in your situation so I'm sorry I don't have anything better to offer but I really hope you find what you need.

pookie82

Her GP sounds utterly useless and indifferent to the wider issue here. He prescribed her Immodium? Honest to god.

If I were you I'd probably talk to a GP myself, on my own (not the same one) and lay it all out as you have done here. Ask for their guidance, ask how they would advise you to proceed. There have to be local social services in a position to step in, assess her, and suggest even part time residential care for her or something to give your parents a break.

Perhaps she is still being medically assessed on the grounds of where she was in her late teens ... what I mean is, if she passed the LC at all, she must have had some generally good skills and an ability to apply herself. She held down jobs for years, even if they weren't complex. But now she's incapable of cleaning herself after normal bodily functions and wiping stained hands on the curtains. It sounds like this situation has deteriorated rapidly and she needs a completely fresh assessment of where she's at now. Even if a diagnosis is never pinned down, it should be acknowledged that to care for her now takes the same level of commitment as caring for a rather helpless child, and not a mildly challenged adult.

It would be good for her also to get out of the house sometimes and attend some sort of part time care residence. I understand your dad's frustration but it can't be good for her to be yelled at all day (and I mean no disrespect to him, I can't judge as I'm not in his shoes). The anxiety this cycle is creating could well be adding to her distress and condition.

Start with a visit to a GP yourself, and ask for all of the contact details of local nurses/counsellors/social workers, etc. It sounds like a terrible situation and I hope you get somewhere.

Merkin

I think your sister has been failed massively by the HSE.

Do some research, find out the name of a well established and respected GP in your area and go and tell them what you're written here. She can't receive the help she deserves, nor can your parents, when a diagnosis hasn't been forthcoming.

sashafierce

This post has been deleted.

Knine

Merkin wrote: »

I think your sister has been failed massively by the HSE.

Do some research, find out the name of a well established and respected GP in your area and go and tell them what you're written here. She can't receive the help she deserves, nor can your parents, when a diagnosis hasn't been forthcoming.

This above. As the Carer of a child with special needs your post makes me very sad for your sister. She obviously needs urgent help. It sounds like she has never got this. She needs a full assessment of her needs done. Has she ever had any genetic testing done? Has she ever been seen by an Occupational Therapist to help her with life skills.

BTW nobody sets out to be a Carer of a family member by choice. If your parents really can't cope them it is time to call in the professionals. A chat with a social worker would also help.

cocker5

OP,

God reading your post is heart breaking for both you and your siblings and your parents.

Ok so first thing first, if she is at home at home all day everyday have you researched a “day centre” she could attend in order to give you parents a break?

My father had a massive stroke over 15 years ago, has brain damage etc… he walks very slowly with cane and due to his brain damage has similar personal hygiene issues like your sister
I understand this is not the same for your sister but he goes to a IWA centre a few days a week .. this get him out of the house, its gave my mum a break (before she passed away) and he has interaction with people outside the family etc.
so wherever you are based there may be a local centre she can go for activites to give your parents some respite.

Secondly… the HSE does offer some home care assistant… my dad has one hour per day.. they help with showering and other stuff etc

Thirdly – how has she been assessed? You need to contact a local social worker and explain the full extent of the issue, if you only give them bits of information they won’t take this seriously.

Fourthly… once she is assessed and if deemed a person with a disability your parents should apply for carers allowance and also the respite grant.

These may help a bit.. but you NEED to call up the HSE gets the name of your local social worker and explain how difficult the situation really is.

Best of luck OP X

http://www.citizensinformation.ie/en/health/health_services_for_people_with_disabilities/health_services_for_people_with_intellectual_physical_or_sensory_disabilities.html

http://www.hse.ie/eng/services/list/4/disability/progressingservices/

http://www.hse.ie/eng/services/list/4/disability/Disability_Assessment/

http://www.citizensinformation.ie/en/health/health_services_for_older_people/home_care_packages_for_carers.html

LegacyUser

Can't add anything to the excellent post from Cocker5. Except to say that there is help available from HSE, but in my experience, you have to keep asking and pushing - and it takes ages for anything constructive to happen.

There's assessments, different people re-assessing, the same Qs asked over and over again. My own parents found the process quite upsetting, and it took a year for any help to be granted. And for them anyway, it's easy help (an hour of 'light housework' a day - they're mostly able for that themselves! It's the awful stuff that they need help with: toilet, bathing, pressure sores).

I feel sorry for myself re my parents situation - but my god, your parents are in an utterly desperate situation. I'd echo the comments about really getting your sibling reassessed. The feaces thing sounds like a toddler.

Roselm

Merkin wrote: »

I think your sister has been failed massively by the HSE.

Do some research, find out the name of a well established and respected GP in your area and go and tell them what you're written here. She can't receive the help she deserves, nor can your parents, when a diagnosis hasn't been forthcoming.

We don't know if the HSE knows about her!

OP, following the Psychological Assessment your sister will hopefully be eligible to attend/get support from/live at the local Learning Disability service.It would be St Michael's House if you're in Dublin.

nikkibikki

Roselm wrote:

We don't know if the HSE knows about her!

Her GP does. They're part of the HSE!

Hopefully you can get something sorted from the options above OP. Keep at them til ye get it.

LegacyUser

Thank you everyone for your replies. I was quite apprehensive about creating this thread, as to be honest, a small part of me was worried that people would have a negative reaction toward my parents or to my siblings and myself for not being caring enough. It was a relief to see that that was not the case.

I agree with everyone who says that my sister has been primarily failed by her GP. However my mother is reluctant to take her elsewhere as she herself goes to her for her own medical needs. Also my sister has a medical card which is tied to her. My own GP also works in the same practice as her GP so I'm not sure if I can go to him without him fearing he's stepping on his colleague's toes.

My mother has contacted a local care home to see if they could do anything for my sister. They said she'd need to be assessed by a clinical psychologist. She is due to have that appointment which is in December and apparently takes the form of a two hour test.

The situation has actually deteriorated in the past week alone. I called to my parents last night at 6pm and my mother informed me that she'd already showered my sister 3 times that day and during the visit she had to do so again. She thinks that she's now completely incontinent. In an exasperated tone she told me that "it's oozing out of her constantly". My mother has been reluctant to go down the road of adult nappies but I think it's coming to the point where she has no other choice.

Thank you again for the responses. This is not something I can get off of my chest very often. I'd never discuss this with my friends. I also shared the responses with my mother and sisters and I think it helped them too.

Colser

I read your post first day OP and honestly my heart goes out to you all especially your mother and also your sister as she cannot help herself and sound to be very mentally and physically ill.
I didnt post my answer initially as I think some people may think its the wrong thing to do (as you might also) but listening to what your mother is enduring is shocking and will cause her to get ill herself if something isnt done soon.

Would you consider getting your sister admitted to hospital (double incontinence alone would be reason enough imo) and refusing to bring her home until something is in place eg a home/hospice,respite whatever so that your parents can have some sort of life and surely it would be more suitable for your sister also.

I have seen this done by someone I know with an elderly parent and it was difficult but they stood their ground.Its unfair I know on the hospital staff but this is an extreme case and the system is failing your parents and your sister so drastic measures are needed.

pookie82

helplessBrother wrote: »

Thank you everyone for your replies. I was quite apprehensive about creating this thread, as to be honest, a small part of me was worried that people would have a negative reaction toward my parents or to my siblings and myself for not being caring enough. It was a relief to see that that was not the case.

I agree with everyone who says that my sister has been primarily failed by her GP. However my mother is reluctant to take her elsewhere as she herself goes to her for her own medical needs. Also my sister has a medical card which is tied to her. My own GP also works in the same practice as her GP so I'm not sure if I can go to him without him fearing he's stepping on his colleague's toes.

My mother has contacted a local care home to see if they could do anything for my sister. They said she'd need to be assessed by a clinical psychologist. She is due to have that appointment which is in December and apparently takes the form of a two hour test.

The situation has actually deteriorated in the past week alone. I called to my parents last night at 6pm and my mother informed me that she'd already showered my sister 3 times that day and during the visit she had to do so again. She thinks that she's now completely incontinent. In an exasperated tone she told me that "it's oozing out of her constantly". My mother has been reluctant to go down the road of adult nappies but I think it's coming to the point where she has no other choice.

Thank you again for the responses. This is not something I can get off of my chest very often. I'd never discuss this with my friends. I also shared the responses with my mother and sisters and I think it helped them too.

Ask around for a good GP reference. There's nothing to stop you seeing any GP in the country as long as you make an appointment ... I've swung from GP to GP since I moved away from home and I will admit it can be a long process of trial and error to find a really good one, but word of mouth does work, people will often be happy to let you know if they have a good doctor. You don't have to specify what for, just ask colleagues/mates if they know of a good GP "for a friend who's asking".

When you've seen one that's NOT in that practice, and are armed with advice and info, you could present it to your mother and encourage her to take your sister, perhaps? I know she might feel tied to her current doctor out of habit but the situation is escalating out of her control and if she's as exasperated as you say, offer to go with them if she'll try someone new?

Colser's suggestion above is more extreme, but perhaps it calls for extreme measures at this point. Could you present her to an A&E and explain you can't control her and fear she's ill? Whatever about incontinence, it doesn't sound right that she's constantly going to the toilet on herself ... it sounds like she has a pretty serious stomach/bowel issue that needs medical attention.