How do you take care of yuorself when you are a carer?

Annsixty My local adult social care stepped in when although not once did I complain of my exhaustion from the 24hour care of my late DH they arranged respite .
There is help out there for you and your GP should be able to get the ball rolling.
I have not heard of anyone in my position having to 'go it alone'

I have long been a "stalker" on Grans net, never really feeling I had anything to contribute to the conversations, but this thread has made me feel like I need to be part of the network. I have a DH with mental health problems, a DD with mental health problems and another DD with physical and mobility and learning difficulties that make her severely disabled. I thought I was alone, but no, there you all are, coping with the same things that I have to. Doing the same things to get by, and feeling the same way I do. I have no answers for the Op, as usual, you seem to be doing much more than me , well done. I am happy if I can just end each day feeling sane. Thanks Gransnet, I am so glad that you are here.

What I can't understand is how the powers that be cannot see that those who do the caring are at risk of burning out if they do not get some regular respite (and I don't mean half a day a month). If all the carers burnt themselves out what would happen to those they love and care for ? (And let's face it they play in the fact that you do love them or you wouldn't do it).

So very sorry to read some of these heartbreakingly sad posts .

I spent years as a carer and found it very taxing on my brain. There was no fore thought i.e. person is getting older and less able to climb stairs to bedroom. They waited till person could not manage stairs and carer having to heave large person around before theu started assessing and form filling then looking at budget etc etc meanwhile carer tired and getting ill. Finally get stair lift person has 1 month use before death. Similar happened to neighbour. Got house made wheelchair suitable patient came home from hospital died that night. SS need to anticipate problems and solutions and not leave it till last minute
SPF

Skweek can I ask where your 'cared for' person is and who is caring for them, while you are enjoying the choir and Tai Chi (which I would love). Similar groups are offered locally but they are often poorly attended/are soon closed and no one seems to realise that without alternative care in place the 'Carers' cannot go.

I'm not sure my 35 yr old daughter would appreciate being put into respite.

Adult care at your local council - ours offers respite care, occasional cash for you to have a break, go to exercise classes etc., and we also have a brilliant "Carer's Resources Centre", where we can go to Yoga, Tai Chi, have a chat and a cuppa, we have a choir etc. We're a pretty appalling deprived area and if we have it, if you ask, I'm sure you will get help/support and advice from your local council.

Oh how Ive read this and cried we are a team of doers in this god for sake care system of unanswered calls and forgotten referrals Nhs is at breaking point and the caters are at the end of it I know running between two mothers keep going and pray it will come to a natural end soon x

Granny23 - all that you have written encompasses my reasons for leaving SSD. Drove me nuts. Very little that was left for us to offer families was satisfactory, or not hedged round by so many ifs and buts that it was hardly worth having.

And those services that do appear have so many unnecessary bits of paperwork etc. A district nurse visited today and spent ages and ages filling in forms and assessment criteria etc. - all we needed was a mattress to prevent pressure sores. There were reams of this.

All that has made me decide that I will carry on managing and keeping my independence and privacy as long as I can.

Kitty the Social Worker's visit WAS to do my Carer's Assessment. She assessed me as in sore need of a break BUT as I said earlier nothing actually available in the immediate future. She explained at great length about the self managed budget for personal care services. You can ask the Council's SW department to manage this for you BUT she stressed that the service was patchy at present due to the ongoing integration of SW and Health Services and urged me strongly to manage the budget myself via private providers, (More Stress). However the services which can be funded must come under the umbrella of the Scottish Government's 'Free Personal Care for the Elderly. So, we could hire someone to get DH up, washed and dressed, ensure he takes his pills, etc. BUT not someone to do cleaning, laundry, shopping or cooking. DH would not countenance a stranger helping him with personal tasks and that is, at this stage, the least of my problems. Although DH would Qualify for the FPC component of the charges for Day or Respite Care, I was shocked to learn that the Council's 'hotel costs' charges are £68 per day for daycare and approx £300 for 3 nights respite. Much more if you go private. We would not qualify for reduced charges because although we are income poor we have quite a lot of (ever diminishing) savings.

Foolishly and not wanting to refuse everything, I agreed to having a MECS alarm fitted, although, because DH is never left 'Home Alone' I am hard pressed to think when it might be useful. Having agreed to have the alarm, I now find that we must pay for the coded key box and fitting, have a spare set of keys cut (more hassle) and that there will be an on-going weekly charge for the service. What has really riled me though is the insistence on DH (aka me) completing a two page disclosure of all our finances, Service User and Partner's (if any), income and housing costs, all to be detailed at a weekly rate. As I know we will have to and am quite prepared to pay these expenses, I refused to complete the form but have been advised that I must (so that they can see that we can afford to be self funding) before they can proceed with the alarm system. Also that the form will be kept on file in case we apply for any other services in future.

Am I being unreasonable? Or would it be easier, less stressful, to show these 'professionals' the door and simply do the best I can without their so called support?

My phone has a mind of its own at the moment..

I hope those of you.....

I ho poo E those of you caring on an on going basis have had a Carer's assessment. You are entitled to a home visit from a social worker - despite what they might say to fob you off - insist on it!! Not sure about Scotland granny23.

Its rare that I find time for anything these days. Its all I can do to try and keep up with washing and housework. There is no other family, so 'it is what it is'. There is nobody to take over, or give me a break. Just keep plodding along.

Carer, after Dentist, is the last job I would ever have chosen for myself - temperamentally unsuited, I hate dependency which is why I have a cat not a dog. I have resisted the 'Carer ' label, always saying 'No. I am his wife' but every form that has to be completed, every leaflet is addressed to the 'Carer' and your own needs, wants, aspirations, health issues, other responsibilities are neither mentioned nor taken into account.

No, merlot it isn't wrong and I understand your frustration, but 'carer', like 'wife' is a descriptive role and especially so in terms of people who suffer from mental health problems. Mental illness sometimes/frequently means that people are unable to function without someone in the role of carer and most often that person is a family member. Sometimes, sadly, it can seem to the carer that their lives ARE defined by the all-encompassing nature of that role.

At what point do we start referring to ourselves as carers?

I don't ever want it to be what defines me. I am a wife, mother and grandmother. If I ever have to devote all my time to DH's needs I will still be his wife.

My mother once informed me (when she was not in a good mood) that I was her 'main carer.' I swiftly reminded her that I was her daughter and would remain so until she died.

I don't want to be labelled. Is that wrong?

The only thing that has reduced my stress levels has been ACCEPTANCE and my new motto = 'Onwards and Downwards. Trying to carve out some 'me time' when I could continue with some aspects of my usual political and community activities has proved in general not possible through lack of alternative care for DH and his extreme reluctance to accompany me to any gathering unless it is with family only. It is far less stressful for me, DH and our DDs if I just accept that that part of my life is over (other than being a Keyboard Warrior).

This is the penultimate week for DH attending Day Therepy 10.00 to 15.00 on Wednesdays and we have had visits from the Carer's worker and social worker explaining what support they can offer e.g. 1 day a week day care BUT there is a 10 month waiting list; 3 days respite care BUT again a waiting list and random availability such that you cannot book a short break and book respite for that time.

I have a full file of fliers, listing social activities, training courses for carers, social activities, etc. Not a single one of these has a concurrent provision for the 'cared for' person. I have managed to attend some of these (on Wednesdays) and discovered that all the other Carers present were able to be there because their relative was now in residential care or attending some sort of sheltered workshop.

So many services look good on paper but on closer inspection there are caveats. For instance - we were offered hospital transport to take DH to and from his Day Therapy.....BUT in order to take advantage of this DH would have to be washed, dressed and breakfasted and ready to go by 8.30 as he might be the first or last (9.45)to be picked up. Now on a normal day it takes around 2 hours to get DH up, shaved, showered and hair washed (he is obsessive about this), clothes chosen, help to get dressed, something to eat, pills taken, hearing aids found and put in. So we would have to be up around 6 or 6.30 in order to be ready for 8.30, with the probability of over an hours pacing about anxiously waiting for the transport to arrive.
I have been driving him there myself - much less stressful and if he IS being difficult then we arrive a bit late - So What?

I was never one for Beauty, or Shopping Therepy, have solved the 'lunch with the girls' gap by simply inviting them to lunch here while DH usually ignores them, potters about or sleeps in front of the TV. He used to make the Teas and Coffees but has lost the ability to follow everyone's differing recipes, often popping a last minute Tbag into each cup (including the coffees) in case he had forgotten. I have been able to devote more time to my other passion i.e. organic produce growing and preserving and have a chock a block freezer and approaching 100 jars of jam, jelly and chutney to show for it.

I am trying to convince myself that the daily 'Hunt the...' Keys, Hearing Aids, Pills, Glasses, Remote, Diary, etc. is an enjoyable game but not quite got there yet.

I think the most difficult thing for me is the expectation that the house will revolve round OH's needs. Now I realise that sounds horrible and selfish, but hear me out!

I had a depressive illness some years ago and still take a small maintenance dose of an AD. I am also in lots of pain from various broken or collapsing musculo-skeletal problems. But the expectation is that I will just bash on. My OH is no longer able to be the sort of mutually supportive partner of old, so if I feel low, I have to look elsewhere for support.

TBH there are days when I think I feel worse than he does!!

I have my music - both listening and participating - and books of course, all of which are a help - but cannot be satisfactorily enjoyed as before because OH needs something before you can blink!

But I am lucky as I can go out and leave him to go singing or whatever - I just ring and check out how he is doing. Good wishes to all trying to find an answer to this.

Sar53, I sympathise, as I broke my leg last year and it was a long time before I could put weight on it; the worst thing was the isolation, things that had been so near had somehow become so far, it was awful. Is there a neighbour who could come in to be with your husband to give you a break?

I know my situation is not the same as many of the rest of you and I sincerely admire what you do and the sacrifices that you have to make.
I have become a carer since last Friday when my OH came home from hospital on crutches with instructions not to put any weight on his new left hip for at least the next six weeks.
At the moment it's the disturbed night's that are the hardest, I have to help him get in and out of bed. I love him and want to help but feel as though I cannot go too far and leave him on his own.
Both of my daughters live a distance away and I cannot go and visit for the next few weeks. I miss my girls and my four granddaughters. I think I am feeling a little sad today, I'm sure it will pass.
I know that next year sometime we have to go through this all over again with the other hip.
Thank goodness for my books, I don't know what I would do without them.

I have a lot of caring friends and relatives who help to share the load and I find cleaning and keeping busy (usually, though not always) distracts me from dwelling on difficult situations. Just now I have shingles and have been told by my GP and the Consultant to take a month off and rest, so I've been on lockdown for weeks - forbidden from going out or doing any work at all and being cared for by The Wonderful Man (with lots of input from his parents). I haven't had any energy or the ability to concentrate until the last couple of days and it's been very odd.
I've actually been very comfortable just sitting and doing nothing much, which is all the confirmation my family needs that I am indeed very poorly!

I am very lucky in that I have a career who comes in twice a week, I also have a dog who has to go for even little walks. But the best of all (I think!) is going to gentle pilates class once a week. I know that physically it has done me a huge amount of good and even though I ache right now I am straighter and my hips don't hurt!

It's in the past now, but I got a Wii and did games and exercises with that. I also had a beautician/hairdresser who came to the house and cut my hair and did my nails. It stopped me feeling like a bag lady!
That long period of beng a carer stuck in the house has had a long term effect though. 10years down the line and I still cannot stay in the house for a whole day. I HAVE TO get out or the panic feelings of being trapped start all over again.

I am not a carer and feel a lot of sympathy for all the ladies on GN who are and who are probably feeling just some time to themselves without the worries would be wonderful. One of the best stress busters for me I think is reading a good book. Something that grips your imagination so you are completely lost in the story. Books are so therapeutic, can be dipped in and out of when you only have a little time even. I also enjoy knitting and crochet which is quite relaxing but have to be in the mood to do that. Sometimes on a quiet sunny day there is nothing nicer than hearing the birds singing or sitting in a garden doing absolutely nothing at all but enjoying a bit of fresh air. For me it's the very simple things that bring the most pleasure.