My mum

[bid]

If the mods don't mind, I thought I'd start a thread about my mum, so maybe I can come on here and off-load from time to time.

 

The situation at the moment is very difficult for me, as I don't have anyone to share this with. I have some lovely friends, who I know care about me, but they are almost exclusively work colleagues, so I can only really say so much as I'm their line manager. I know from when my dad was so ill and then dying my DH doesn't cope well with this at all. And my lovely forum mate has heard more than enough from me about my woes in general and deserves at rest!

 

I feel so guilty. My mum is physically disabled, as well as other health issues. She's terrified of going into a nursing home, and I know she wants to be with me and my family. But our house it just too small, not even enough room for an extension as she needs a specialised wet room because of her mobility probelms. At the moment Big A uses the downstairs study/dining room as his bedroom as it is

 

I'm terrified it's going to turn out to be cancer. A few months before my dad died, I sat with my dear uncle for his last few hours and held his hand until he passed away from cancer. I keep remembering all of that, and the end of my dad's life when he was so ill

 

I just want to pick her up and bring her back here, but of course I can't I feel as though I'm letting her down

 

Please don't feel you need to reply really...just getting it all out without feeling I'm dumping it all on one person is a huge help.

 

Thanks <'>

 

Bidx

 

I can't really face autism and the forum proper at the mo IYKWIM, so I hope it doesn't look as though I'm just sort of using the forum

Edited January 16, 2009 by bid

[Karen A]

I know you do not need people to post but I wanted to know I am thinking of you.

I looked after my mum on and off before she died four years ago.

Things did not work out the way either of us would have liked.Mum wanted to stay at home but we could not cope in the end.

It is very difficult when you have family and older parents.

I cried when I read that you want to bring your mum back to your place.It is tough. <'> <'> <'> Karen.

[pearl]

<'>

Know how you feel - in a v similar place, although my mum is well at the moment. She's just on the cusp of coping/not coping in her own home so we'll have some tough decisions to make eventually. She's always been adamant she did not want to live with anyone - our house is too small & my brother's is off limits. But now a home is a distinct possibility, she too is terrified of the thought.

Post away whenever you want <'>

[lorryw]

Hi Bid,

Im so sorry to hear about your Mum. Has your Mum had an assessment by social services. She is entitled to direct payments which would enable her to continue living at home using her payments for a local agency or employing her own staff directly. Just a thought.

take care

Loraine xx

[hev]

i cant say i know what you are going through as ive never been through what you are going through.

i do remember when my dad was in intensive care for 3 weeks and i posted on here every day and it did help me to write down my feelings on here,my dad is ok now

am thinking of you bid <'> <'>

[nellie]

Bid, <'>

 

Sorry you're having such a difficult time.

Wise words from Loraine, your mum has the right to an assessment.

 

Nellie xx

[bid]

Thank you everyone <'>

 

She's started on stronger pain killers, which so far are working better.

 

I don't know about direct payments...she has a lot of money held in trust for her by me and my sibs (I think that's the correct term ). She already pays for a lovely carer who comes in twice a week, so maybe we need to think about her coming in more often. The real problem is the being on her own as much as anything

 

Bidx <'>

Edited January 17, 2009 by bid

[bid]

 

My mum was seen by the GP on Thurs, who did a couple of exams and then said she was refering her for a scan and another investigation.

 

Then she had a letter today to say she's got an appointment with the surgical team on 28th Jan.

 

So I'm thinking it doesn't look too good

 

She's also said that while the new meds are better than paracetamol/brufen, they still don't actually get rid of the pain and she's feeling really bad

 

Bid

Edited January 17, 2009 by bid

[Karen A]

Thank you everyone <'>

 

She's started on stronger pain killers, which so far are working better.

 

I don't know about direct payments...she has a lot of money held in trust for her by me and my sibs (I think that's the correct term ). She already pays for a lovely carer who comes in twice a week, so maybe we need to think about her coming in more often. The real problem is the being on her own as much as anything

 

Bidx <'>

 

Hi.It may still be worth asking Adult social care to do an assessment.They should be able to figure out with yourself and mum whether there are ways that she could obtain more support.Another option might be to obtain advice from a local organisation that offers specialist benefits advice....age concern may be an option or a local branch providing support for whatever physical disability your mum has might be another.Karen.

 

[lynne]

 

 

Hi Bid,

 

I think I would ask for an assessment but it sounds like she will be having some investigations soon. So you could also ask for the hospital social worker to become involved, once she is an inpatient.

 

You need to find out what is wrong with your mother first and take it from there. It may be with additional help your mother could cope at home.

 

If your house is small than it will be very difficult to have your mother there.

 

 

 

[KarenT]

Hi Bid, so sorry to hear about your mum and no wonder you're so worried. I can sympathise - this last year I've been my mum's main carer and it's taken a lot of time, effort and sympathetic support to help her realise that she wasn't able to manage any more in her council house. Over Christmas we helped her move into sheltered accommodation and although it was a wrench for her (she'd been in her council house for 52 years) she's happy and settled now and it was all worth it.

 

I totally agree with what others have said about a care assessment. At this point you don't really know what you're dealing with in terms of your mum's health but it's very likely that she'd be able to have some support in her own home, so I'd definitely suggest you go for the assessment. In our case, the social worker was happy to talk with me and my sister first as long as she was satisfied that my mum was aware of it - as I'm sure you know they can't carry out an assessment or offer support unless the person themselves accepts it, so you'll need to make sure your mum wants help before applying.

 

I don't want to advertise here, but the sheltered housing complex my mum has just moved to is run by in a way that brings the community into the building, rather than isolating the elderly as has been the way of things in the past. There's a large public area downstairs with a restaurant, shop and hairdresser, plus the usual day room facilities where they hold activities and entertainment etc. (I've been amazed at how much my mum has picked up emotionally since having the opportunity to mix with other people - the social side of things does make a big difference). The residents' area is separate. This is termed 'end of life housing' which sounds horrible but actually means that because there are professional carers on site 24 hours a day, as long as the resident's care needs don't require medical intervention and support their needs will be met for the rest of their life and they'll never need to move out - the care package increases with need. I know you're concerned that your mum may have serious health problems and I appreciate how worried you are, but if not (and perhaps even if you're right) she might benefit from a similar sheltered housing arrangement if you can find one in your area. If you want to know the name of the organisation so you can look into their provision and find something similar locally, let me know and I'll PM you.

 

In the meantime, please make sure you take time out for yourself and look after your own needs too. After all, if you're not up to it you can't be there to support your mum, which is clearly what you're trying to do right now. I hope the test results are more favourable than you're expecting.

 

Karen

x

[Kathryn]

Bid,

 

Thinking of you

 

<'> <'>

 

K x

[pookie170]

Oh, Bid.... <'>

 

I'm so sorry to hear about your poor ol' Mum. It's so hard to see them ill, but you're doing what you can and giving her the kind of love and support that many older people won't experience.

When my Mum was ill, even though we had the room to look after her, we weren't allowed to,being deemed to young to cope with two ill parents. Mum went to a local hospice for a brief stay then went to her sisters for the remainder.....

The suggestion of sheltered housing could be a great alternative, once you know what's needed medically speaking. Also, there should be day care available to her, which often becomes a real social lifeline for older folks- again, I don't know much about her illness, but it might be worth looking into? Again, Social Services should be the people to help here, they were such a source of support for us and our Dad especially.

Are there any other family members/close friends that you could set up a visiting rota with? Again, not sure of your situation here, but this might help with regards to checking in on your Mum, making sure she's got everything she needs and such.

 

I hope things go okay on the 28th- try not to worry yourself ill right now though, as Karen says, you need to try and stay positive and string or you're going to be ill yourself. I know, easier to say than do, but try and relax a little at the end of each day, hon. For what it's worth, I'll send positive vibes your way, and keep you and your Mum in my prayers.

Chin up, my lovey, and remember that if you need to let off steam, this is a fab place to do it.

 

Take care,

 

Esther x <'>

 

[bid]

Thanks all <'>

 

She already lives in a warden controlled bungalow, has a carer three times a week for cleaning, shopping and to help her take a little walk outside with her wheely frame (she can't walk unaided anymore), plus another lady comes once a week to massage her lower legs as she suffers from severe oedema. And a library lady comes every couple of week or so with some books for her. My elder brother who is semi-retired lives nearby and pops in and out, and I visit on one of my days off each week.

 

We went throught the absolute horror of SS when my dad had dementia...I don't think any of us want to go anywhere near them again TBH. If you thought things were bad for families with SN kids, it's just as bad at the other end of your life

 

So she does have quite a good support framework, it's just that she is now getting so frail she really needs to be somewhere with care on hand all the time I think.

 

On the plus side, the new meds do seem to be kicking in and she was well enough today to go for a little drive out in the car with me. On the down side, she has a urinary infection, which is nasty in the elderly as it causes confusion, etc

 

Thanks for all the kind thoughts and suggestions guys, especially Karen T for your PM <'>

 

Bidx

[kellyanne]

Oh hun <'>

 

Only just seen this, Just want to say I'm here if you need to talk anytime. And as i'm on mat leave I can't really class you as my line manager atm I may not know what to say but i do have very good listening skills. Thinking of you hun <'>

[bid]

Thanks hun <'> <'>

 

My mum saw the surgical team today. On the plus side, they have confirmed that her existing condition has not become anything more sinister, but they are doing a scan of a related area to be sure. But on the down side, they don't want to operate because of her age and medical history.

 

So the prognosis is that the severe pain won't go, and the answer is pain management. Thank god, my mum has finally grasped this concept, after a lifetime of thinking that more than one aspirin made you an addict!

 

Next step is to sit down and discuss options for her future living arrangements.

 

Thanks again everyone for all your kind thoughts

 

Bidx

[Enid]

Glad to hear Bid Enid

[pearl]

Glad its not what you thought bid <'>

My mum has an aneurism & they won't operate for the same reasons.

Hopefully once they sort out your mums pain meds she'll feel happier.

[Kathryn]

Mixed news then - good to hear it's nothing new and sinister, but I hope they can help her cope with the pain.

 

<'>

 

K x

[Karen A]

Thanks hun <'> <'>

 

My mum saw the surgical team today. On the plus side, they have confirmed that her existing condition has not become anything more sinister, but they are doing a scan of a related area to be sure. But on the down side, they don't want to operate because of her age and medical history.

 

So the prognosis is that the severe pain won't go, and the answer is pain management. Thank god, my mum has finally grasped this concept, after a lifetime of thinking that more than one aspirin made you an addict!

 

Next step is to sit down and discuss options for her future living arrangements.

 

Thanks again everyone for all your kind thoughts

 

Bidx

 

Morning.I don't know what the cause of your mum's pain is so I am generalising a bit.But if it is possible she is not coping so well at home because she is in pain or is less mobile because of pain it might be worth attempting to sort out the pain management and leave talking about future arrangements for now.Sometimes people who have pain are very limited in coping at home because they are in pain.Once good regular pain management is sorted out they cope much better.It is just a thought.

I don't know if you know I used to be a district nurse in a previous life so am not just talking out of my hat. Karen

Edited January 29, 2009 by Karen A

[bid]

Morning.I don't know what the cause of your mum's pain is so I am generalising a bit.But if it is possible she is not coping so well at home because she is in pain or is less mobile because of pain it might be worth attempting to sort out the pain management and leave talking about future arrangements for now.Sometimes people who have pain are very limited in coping at home because they are in pain.Once good regular pain management is sorted out they cope much better.It is just a thought.

I don't know if you know I used to be a district nurse in a previous life so am not just talking out of my hat. Karen

 

Unfortunately, Karen, my mum's main disability is a degenerative neurological condition called CMT...this other medical problem is on top of her physical disability.

 

Because of her CMT she can't walk unaided (wheely frame in the house, wheelchair outside), obviously can't manage steps/stairs, struggles with all aspects of daily living, etc.

 

I know from bitter experience with my dad that it's very, very easy to leave things too late when it comes to making often difficult decisions about living arrangements, etc.

 

On the plus side, you're quite right that proper pain management will help her depression.

 

Thanks so much for your thoughts

 

Bidx

 

[pookie170]

Hey Bid, glad the outcome of the appointment wasn't bad, though I wish they'd been able to offer your Mum something to 'fix' the problem. I do hope the pain issue is sorted out quickly for her, she sounds like my Gran, who had an inbuilt aversion to taking regular meds....I'm fairly sure this was down to the sense of 'stiff-upper-lip' attitude that was drummed into her as a kid, she was expected to get on with it, so that's what she always tried to do, poor thing!

Being your parents' carer can be so intense, I hope you're managing to unwind a bit? Your Mum is so lucky to have you, Bid, you're doing all you can because you care and you want to, and I can't really express how this is taking me back to my own folks....I hope you guys manage to get things sorted, its so stressful when things are undecided/uncertain.....

Ooh, have a <'> from me, and I hope your Mum's feeling happier soon.

 

Esther x

[Flibs]

We went throught the absolute horror of SS when my dad had dementia...I don't think any of us want to go anywhere near them again TBH. If you thought things were bad for families with SN kids, it's just as bad at the other end of your life

 

Sorry to hear about your bad experiemce of social services

Re direct payments and assessments

 

An adult is assessed under CC and NHS ACT for what are eligible needs then after a finacial assessment if you have savings over 22,250 you are classed as self funding and pay for your own care (whatever you want) otherwise you may pay a contribution or sometimes nothing at all. Direct payments work in the same way. Make sure your mum is in receipt of all of her entitled benefits such as attendance allowance .

Hope that is useful and that your mum feels better soon x

 

[bid]

Thanks Flibs

 

My mum is over the savings limit and pays for her carer.

 

I organised Attendance Allowance for them both before my dad died as their financial situation was different then...I don't know whether she has continued with that since selling the big house and getting my dad's estate, etc.

 

Bid

Edited February 1, 2009 by bid