As you all know, I am often on the edge, although my husband, I guess only mid stage, I don't mean to be a no coper, but what with loosing Mum and Dad so recently it's all a bit much. Reading all your posts are there critier for respite, ie do you need to have CHC, or can you qualify before that? Or do we have to pay, any advice please, although F would be mortified at the thought, but reading all your posts sounds like'absence makes the heart grow fonder'!!
Lots of love
Debbie xx
Debbie!
I struggle too and so often I think myself weak and rubbish at my failure to cope as well as I would want. I screw up a lot too!
I think this is fairly normal.
See the G.P... lay it on thick about your struggle... tell them that you are not sure you can continue even. Ask for a referral to the CCG for Continuing Health Care. Continuing Health Care is not just about respite it brings with it a lot of other input like free Care Agency visits.
Please, I nearly broke before I got onto this track.
I post a lot here about CHC. I am not an expert, but I am learning fast. Get a referral and then come back to me and I will steer you through maximising your chances for a good outcome.
i t's damned tough this PSP caring lark. I wonder daily whether I will continue to cope.
My heart is with you.
Kevin
I'm here in the US...B can be left an hour or two...so I wnt to a restaurant tonight and had a bit of a respite...I felt lonely and hungry and guilty and sad....I ate half the meal and the rest I took home. B actually ate 4 bites which we would equal to one small bite for those of us who know how to load a fork up lol.....I feel better now . I hope you get some respite I see Kevin 1 has responded, I haven't read post, but they sound like they know what they are talking about...
Goodluck Debbie,
AVB
Oh, AVB - That sounds so demoralising. I hope you got a chance to enjoy the food later.
Hugs to you both
Kevin
xx
Hi Debbie,you can have respite before chc,you will need to check your situation we are all different and every local authoriety seems to make their own rules but had Des lived I would have paid a percentage.Good luck Px
I went down the route of social services assessing us and allowing us 14 days respite a year for which we had a financial assessment. However the cost per week is nothing like the cost of putting your loved one into a nursing home. Don't know the rules they use but its quite reasonable. We were also registered with crossroad which is a non profit making organisation and we didn't pay anything for the four hours every week they attended. There is a waiting list and it took a year till we got to the top of that but by then we were ready for the freedom that this gave me. Another source of respite is the hospice who have a days visit for a few weeks at a time which also helped both of us as they talk to the person suffering from PSP and make sure that they are aware of choices which may have to be made further along the line - peg feeding, DNR etc. all helps as its so impartial. The other thing we did early on is use the AA for four weeks respite which we paid for. Any person you trust or an agency will be able to do this. Good luck and hope you find something to help - it makes such a difference and being by yourself for a short shopping trip or a vist to a local café is to be enjoyed. Then you can return to caring duties feeling a lot better. Love Pauline x
Hi Debbie
Is F a patient of your nearest hospice? If not, get him referred via the GP, they may well offer respite.......X
Sorry - got mixed up - should read the AA was used for four HOURS per week not weeks. Schoolboy error - typing too fast and not thinking enough!! x
If you have a local hospice ask your GP for an introduction to them, hospices often have a couple of respite beds to allow carers time out. They will usually assess you both and as charities do not charge but ask for a donation. They often also have a day care centre for 8-12 week periods which can give some day relief.
Good luck Tim
We were referred to local hospice and Chris goes every Monday for 5 hours and goes for a week respite every 6 months. We are not charged. Anything else we have to pay for as we have savings.
Once a week I pay for someone who cares for Chris while I go out
I am realising that I cope so well all other help will not be offered.
I am ready to follow Kevin's advice and say I can't cope alone !!!
The new me !!
I wonder.
love, Jean x
Hi Debbie social services have granted me 5 weeks a year respite for J to stay somewhere in a carehome but they will only pay something like £62 per night which is quite difficult to find somewhere that accepts this rate. I was lucky the last time as the care home agreed to accept local authority rate which was great except J has said he didnt like it there much. I thought it was great and a godsend but as it was a nursing home J found he was sitting with people with dimentia etc and did not like it. x
Hi Debbie, you can book F into any nursing home that does respite. But you would have to pay full then. Have you been assessed by Soical Services yet? Also talk to the hospice, they might be able to help or advise you how to go about it. May be, you are getting close to being able to apply for CHC, again talk to the hospice.
The fact you aren't coping, means to me, that you need help now caring for F. I know it seems an impossible and huge step to take, but I am afraid Debbie, if you want to carry on looking after your husband at home, it's a very small price to pay. Please, for F's well being and your sanity, please, please start talking to the professionals. I know we all moan about them, but they do have a role to play in our lives.
Sending big hug and lots of love
Heady
hi
must echo everything that has been said , refer yourselves to adult services asap, they will give you at least some free hours for carers leave, this is how we started. they will offer more if deemed to be needed so always think of your worst day when they assess. the financial assessment is based on income and savings we had to pay approx a quarter. our hospice is wonderful they do not offer respite but rog went to the day hospital for eighteen weeks and hospice at home give me at least 4-5 hours per week for no charge so get reffered . i could not cope without respite , it does us both good although i suppose rog is a bit further on. register with your local carers organisation, i hate the word carer, it is a national organisation and they can help with forms etc.,
keep smiling
julie x
Hi, Debbie. I am one of the walking zombies. I've looked after Mum for a year now and until a few weeks ago hadn't had more than an hour or so off a week. I had a direct payment from SS but I couldn't find a home that would take my Mum for the budget they'd given me so I called in 2 carers from an agency every now and then to allow me to go out for a few hours, they couldn't even pull up her pants or work out where the pad went) The inevitable happened and when the warfarin nurse called to check Mum's levels I broke down, I was shaking and slobbering and melting and I used to be a nurse!! I was ashamed of myself but the next day community matron turned up and managed to talk the rehab unit into taking Mum for 2 weeks. It taught me something, no man is an island, right? Mum is suddenly being assessed for CHC (don't suppose she'll get it but they will have to look at her needs and mine realistically for once) What did I learn....Cry, sob, scream if you have to, if you look like your managing they're quite happy to ignore you, don't let them. As Heady says put your own oxygen mask on first.
Good luck
By the way the respite was amazing
I only seem to sob uncontrollably when it's only me and him! And that's no use to either of us! When anybody asks, professional or family! I tend to say everything is ok, silly me, and silly them for believing it, how can everything be ok? Things are going to change, I need to self teach' breaking down at the correct moment' let's face that shouldnt be too difficult, I manage itost days without any effort! and say I don't know how much longer I can cope
That's the plan anyway
Debbie x
That's the spirit! Everyone thinks I can cope, but you HAVE to tell them different. You have got to realise, these people only see you for a few minutes, you smile, F is obviously fed and well cared for, what else are they going to think, but you can survive. It takes time to ask questions, which, in fairness, they haven't got. If you feel you can't break down in front of people, how about writing to your GP, lay it all out there, in black and white,(keep a copy!!!) plus the reasons, why you feel you have to put it in writing! I.e. Nobody gives you time to tell things as they are. It's worth a try!
Lots of love
Heady
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