carers

[jennifer1967]

well i did it. i answered the question what made me think i was a carer. about services that dont recognise im a carer and how hard it is to access services to meet my own needs when im a carer. about how professionals ignored carers and the information they may have about the cared for person in my case PWD who cant always tell the doctor their symptoms or medication they take. i did mention about training like moving and handling to stop people damaging their backs or the person they care for. also that information such as benefits, training etc needs to be more widely known and shared. i hope i did you proud and didnt let all of you down. i said a lot of my support came from alz. soc. local and the forum.
on more personal note, with my chronic pain condition, they cant treat with any more injections as didnt do any good and the same with an operation. i have been referred by mental health team for CBT for the pain. im open to all and to see if i can get improvement on my present pain condition. thanks for support, just disappointed that there doesnt seem anything medically they can do and at 53yrs i feel a bit on the scrap heap trying to look after my husband which will only get worse as time goes by. i just hope one day i will be able to get out of my front door

 

[Woo2]

Great going @jennifer1967 ? Well done , it must of been quite daunting . I’m sure you spoke up well for all carers . I hope that you can find something that works soon??

 

[canary]

Well done for speaking up like you did. We carers need a voice, but too often we are just too busy.

Im sorry to hear about your pain, I do wish there was some way to manage it.
xx

 

[Bunpoots]

27 years ago I had a bad knee with a swelling like half a tennis ball on it and could hardly walk, couldn’t squat or even sit down normally. I went to the GP who, after 6 months of no improvement, referred me to hospital where they decided , after an x-ray, that there was nothing wrong with knee and sent me away - still in a lot of pain.

In desperation I went to a private chiropractor as NHS refused to help, I had one 1hr session and then went on holiday for two weeks. On the last day of that holiday something popped in my knee and the swelling went down. I should have gone back to the chiropractor but didn’t. I think that one session did the trick.

3yrs ago, while caring for my dad, my knee went again. I started to think it was a life long problem. I went to a different chiropractor this time who informed me that I had two bad ankles and a bad back too all caused by trying to avoid causing pain to my knee! I had been gradually getting worse for well over a year before I did anything about it. It took a few sessions to sort it out and I did start to worry about the cost but it was worth it for the result.

If you spoke to a chiropractor @jennifer1967 they should be able to tell you if they can do anything to ease your back. I know what it’s like to feel disabled by pain and problems with moving with no light at the end of the tunnel.

 

[jennifer1967]

thanks bunpoots, i had mri scan and it appears to be a degenerative spine irritating/inflaming the sciatic nerve. the steroid injection to the nerve didnt work. i know what a knee feels like after having a half knee replacement. i do have wear and tear on my back from being a carer in care home which is why i emphasized about moving and handling training for carers so they dont damage joints when caring for people. im thinking now maybe a tens machine might help as i have heard it can give relief but not sure how much. they use it in labour so must be worth a look

 

[Melles Belles]

Definitely worth trying a tens machine. Sorry the injection didn’t help you.

 

[jennifer1967]

Definitely worth trying a tens machine. Sorry the injection didn’t help you.

just ordered one see if i can get a bit of mobility back

 

[lemonbalm]

Well done @jennifer1967 . It sounds as though you did a great job speaking up for carers.

I hope the tens machine is helpful. Everything is worth trying.

 

[jennifer1967]

i thought i would update with the feedback i have just got after speaking to the scrutiny panel of local city council. they said that i was honest and clear to the difficulties of being or not being identified as a carer. valued my contribution and that i was an asset to the inquiry.

 

[Banjomansmate]

?

 

[Woo2]

Fab

 

[jennifer1967]

it looks like i might be needed again for different aspect of caring, information

 

[Woo2]

You obviously impressed them , well done ?

 

[jennifer1967]

just thought i would say that im being referred to the persistent pain team. sounds like im a right naughty girl being a persistent pain but its more interesting than being good

 

[Woo2]

That sounds promising ?Who wants to be good hope it helps you .

 

[Izzy]

just thought i would say that im being referred to the persistent pain team. sounds like im a right naughty girl being a persistent pain but its more interesting than being good

I think I would have been classed as that at school!

Seriously I hope this is route to you getting some relief from your pain.

 

[jennifer1967]

hi just thought i would say that ive been asked to speak at another scrutiny panel for the city council this time on the topic of benefits and sharing of information about where to go for advice, what needs to be done and your rights eg. care assessments, carer assessment, rights even having a doctor out if you cant go to the doctors because of your caring responsibilities if you cant leave that person etc. apparently they said i was good and they want me back. after the week i have had, it was such a pick me up and morale booster.

 

[lemonbalm]

You must have done a good job @jennifer1967 . Well done!

 

[jennifer1967]

well following on from novembers scrutiny panel success, they have asked me to again contribute to the scrutiny panel to help my city to be more carer friendly. they are looking at information sharing which is woefully inadequate. my section is about benefits, adaptions and council house adaptions which we are waiting for the bathroom as my husband cant get into the bath and we rent from the council, and organizations that have supported me. we would have a problem claiming pension credit now[ when the state pension is lower than the minimum amount needed to live on.] we are in an age gap marriage and im 53 hes 72 so we wouldnt be able to claim now as we have both got to be pensionable age so he would be able to get it at 85yrs. we still get it because we have for long time cant make fresh claims eg carers allowance because we will lose it. its only people who are affected that would know. ive only known about other organisations from TP and local alz. soc. dementia navigator who i would recommend to any body. font of all knowledge. TP has been the source of information but to me more than anything its been a lifeline, comfort, support and encouragement. thankyou

 

[jennifer1967]

thought i would just share that im talking to the scrutiny panel inquiry tonight. its to help my city have more carer friendly approach in line with other local authorities who do it better. i had good feedback about the last time i was interviewed and that that i shouldnt be repeating myself at every appt that i have to attend with my husband or even to get my own needs met. even when i have to go for tests or treatment, i cant relax and do phone at least once to check he is ok and ive remembered to put his falls alert on him.
tonight its a different aspect, that of what benefits carers are entitled to and how difficult it is to find out that information. that if you are in an age-gap relationship, there are certain benefits you are penalised for. also about council adaptions for those that rent house from council and needed it adapted. with me its the bathroom as my husband cant get into the bath and the the strain that puts upon carers eg. carrying bowls of water from kitchen to living room for a hair wash with my back is considerably painful. the last question which should really be the first is what community support have you got. my only support come from DTP and my local alz. soc. dementia navigator. ive gain so much support from this forum and all the members who respond who have become friends. the introduction of wide awake club 3 again is such a boom at stupid o clock when the world is asleep. im trying to change my city a little so that carers are seen as valuable assets that you all are.