Dont become invisible.!

[secrets22]

For me as a carer to my partner/husband,David, who has dementia,and almost no mobility,doubly incontinent and a host of other ailments , its become progressively worse over 5 years,but never was there any enquiry from doctor or health centre how he was doing,until I wrote 2 very strong letters to the health centre and council expressing my concern and anger that it appeared we had become invisible and forgotten about.

Almost immediately we had nurses and care workers coming to see what they could offer,and now we have a hospital bed and a host of mobility aids which eases my workload.We get the bare minimum financial help because we are above the threshold for help,it just pays for a twice a week visit for someone to bed wash him apart from that I do it all,and I also manage our business interests which luckily I can do from home.2 weeks ago David did,with a struggle,attend a day care centre,but unfortunately it was not a great success and I doubt he will go again.The biggest problem is getting him down 4 deep,outside steps,and I have had several companies in to try to address that but because we are adjacent to the sea,it is not allowed to put a lift in due to the chance of erosion.ggrrr.

I have no social life these days,in fact not a break for 5 years,and to be honest I would be to tired to go out if I could.

However I am not a moaner,and am so glad we travelled widely when we did.

Looking back,i never envisaged to be a carer to a man that was so accomplished and able,and who I relied on so much.

We non of us know whats ahead,so I encourage everyone to do what they can whenever they can as often as they can.

[sassy59]

Hello secrets22 I echo what you have said about doing what you can while you can. I say that to our family and friends all the time. Nobody knows what’s around the corner.

I’m so pleased you are getting help and support at long last. You’re doing a great job under stressful circumstances. Xxxxxx

[secrets22 in reply to sassy59]

Thankyou sassy59 for you're comments,it means a lot.x

[FredaE]

I do so agree. Do it now, whatever it is otherwise you can get very resentful about what you have missed. and as you say don't let anyone ignore you. I think help is rationed by only being given to those who ask for it. So often you hearpeople say that no one ever told them about this or that

FredaE

[secrets22 in reply to FredaE]

Thankyou FredaE...and its true we do not get told whats available,we have to delve through ourselves.x

[Hidden]

Hi secrets22,

What a really insightful post about the challenge of long-term caring.

I think it comes as quite a shock to most people to find how hard they have to fight to be even noticed, never mind helped. Say nothing and it’s assumed that you are coping perfectly well.

So yours is sound advice about not allowing yourself to ‘fly beneath the radar’ to make sure you get at least some of the practical help you need.

I think many Carers are called upon to do far more than they can bear but many, like yourself, still manage to do that.

I think it helps to be able, as you clearly do, to keep in sight the person with whom you once shared a very different sort of relationship.

It’s true that none of us ever thinks that this caring role will be thrust upon us, or maybe we just live in hope. But for anyone called upon to do so, I hope they will manage to keep the stoic attitude you have to it all.

But please be as kind to yourself as you possibly can in your own given circumstances. You too have practical and emotional needs.

Very best wishes and thanks for sharing this insight into your life as a carer.

[secrets22 in reply to Hidden]

Thankyou Callendergal...its true we never think we will be thrust into a caring role,and the person we care for is not the person we once knew,but I do remember how things were,and am very grateful for those special times.x

[Kittie103]

Thank you for your post secrets22. It has encouraged me to chase up the Council to get the respite care I was told I am entitled to a few years ago and didn't get.

Very inspirational thank you xx

[secrets22 in reply to Kittie103]

Kittie103,you really must keep keeping on for what you are entitled to and not give up at the first hurdle.It is a battle I agree and so easy to just not bother.Good luck.

[MAS_Nurse]

Hi secrets22, I take my hat off to you as you are so inspirational. I nursed my father-in-law for 5 years, had all the assistance I could because I knew how to access the system as a nurse. I loved doing it, would not have had it any other way but it does take it's toll on you.

So please take all the help you can, have you thought of mind.org.uk, ageuk.org.uk - also has an advice line as well as befriender service and much more. Helpline 0800 055 6122. Crossroads caring for carers - Carers Trust - they again have a chat/befriender service and lots of information you can access- carersuk.org

crossroadscare.co.uk,

What about respite care for David?. Keep badgering the Social Services for some more assistance.

Is there anyone else who can think of any thing else to help?

Good luck.

MAS Nurse.

[CUmbrialass in reply to MAS_Nurse]

Non of us know what the future holds. We are lucky in that we are still able to do a little travelling despite husband’s age (84),you mention Age UK befriending Service -when I enquired about this so that I could have a little time to. Shelf to,have a walk etc. I was told that this was only for people living on their own!

[secrets22]

You are so correct ,life is indeed a journey.

[Hidden]

You really must get some respite - if only so that you have something else to talk to your husband about when you get home. It will enrich your life - is there anything you like to do, maybe join a book club, WI - whatever. Ask for some respite care - you will have to pay but your mental health is worth more than money in the bank.

[Vonnieruth]

People are allowed so many free weeks respite if they meet the criteria They can request one week or more Each one is reviewed at the requested time and can be extended if wanted Some can be respite with view to being permanent This can be done individually by your self By contacting a home and asking for respite That's if you are private paying If you are waiting for financial assessment to be done or recieve a top up all ready it can still be arranged Main person to help you in this is social worker if you have one

[XSitch38]

Hi. i care full time for my mom who has vascular dementia, with a great deal of help from my lovely husband. Fortunately our local team of doctors and nurses have been fantastic, and I have been supported very well. It helped that I looked after my mother in law many years sgo, worked for Age Concern and had my own small business helping families with their older loved ones, that it gave me an insight into what help maybe available. Have you discussed the possibility of direct payments with Social Services which would enable you to employ a PA who could sit with your husband while you have a couple of hours for yourself? Even if it is just to have your hair done, or get a bit of shopping or a coffee with a friend. Every little helps as Tesco says! Mom is now in the end stages which makes it harder, especially at weekends when my husband is working and I don't have PA help. You have to adapt and accept you can't do things the same way as they deteriorate. As long as our loved ones are clean, content and nourished then we must congratulate ourselves at a job well done. We do our best, but we must remember ourselves too. Thinking of you.

[Jacki66]

Like you, my husband was a huge achiever and, like you, we are also above the threshold for financial assistance. We battle on regardless and I have no help at all, probably because I am capable of doing it all (at the moment) and prefer to do so. However, I would like some community support and interaction and this is where it gets difficult. Centres are closing and here in Scotland things are very vast and spread far apart as it is a big country with far less of a population than England. I think what you have done is commendable re writing 2 very stern letters and, yes, I agree that we can become invisible when we self-fund and look after our own. Well done on the letter by the way!

[secrets22 in reply to Jacki66]

jacki66,it really is tough going and I am at my wits end a lot of the time,it makes one wonder why we bothered to save as its all about to go on extra care ,and we have to pay for every darn thing.

David has recently spent 5 weeks in hospital and now he is in a nursing home while I wait to get the package in place,he needs 2 people 4 times a day before he can get home,and its all going to cost a fortune. Worries me sick.

[Jacki66 in reply to secrets22]

I fully get where you're coming from. Just because we worked and saved everything we had instead of not working or working and blowing it left right and centre, we are penalised! Not on. I think we should be rewarded. But that's where the system gets abused. There are those that are in need medically, like our cared fors and then those that just get hooked on it and stay on it and never get off it, despite being capable of getting off it! It infuriates me too. I think when you qualify medically as you and I do, then it should be a medical need which outweighs a financial one. Based on it simply not being anyone's fault that they end up needing care. We all will, to some degree.