After 5 long years and now reached a very difficult peak of caring for my partner with dementia and zero mobility,quite often lately I break down in tears at the sheer exhaustion and worry of the situation,i work tirelessly from morning till night and check on him several times through the night.
Work,business commitments,cooking,laundry ,looking after a large home does take its toll,but we become professional at putting on a good show and not showing a sign of weakness.
I find the biggest problem is in asking or seeking help,although being self funding all I ever get is sympathy and no tangible help.
However,we still keep on keeping on,hoping tomorrow will be a brighter day.
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secrets22
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Hello secrets22, you sound quite depressed which is completely understandable. It’s not a sign of weakness to admit you need help nor to seek it and that’s what you must do.
Contact social services, self funding or not, also your GP and mental health professionals. Keep on until you get the help you need.
You can’t possibly do it all on your own or you will become very ill and that won’t help anyone.
Hi, I am so sorry to read your letter. In lots of ways, people who are self funding get a very rough deal and are expected to work out everything for themselves. However, there is usually a carers organisation in your area and they will offer you advice. Also dementia UK and the Alzheimer's Society are a wonderful source of advice. Attendance allowance is non means tested and can be used to employ a carer/personal assistant to sit with your partnet whilst you go out or to help with caring duties.
As your partner is immobile, you are entitled to an assessment from a Social Care Occupational Therapist who will advise on moving and handling equipment or any other equipment you may need. Most of this such as hoists or stand aids will be provided free of charge whether you are self funding or not.
As Sassy says, you can also ask for help from your GP if you are depressed. The help the Social Services can give varies depending on where you are living as because of austerity cut backs , some areas are only helping people who can't self fund. As part of the care act you are entitled to request a care needs assessment self funding or not.
Caring for someone is really tough at times and it's so important that you are cared for also. Your life is precious also and it's impossible to do the job of caring on your own.
I wish you well and I hope you manage to get some help to give you a bit of respite.
secrets22 - it's probably no help to you but I just want to say that I recognize how you are feeling right now. My caring role is different to yours but nevertheless very stressful and many times I too have felt like throwing in the towel. Today is just one of those days.
I don't know what to suggest that might be helpful, indeed maybe there isn't much to say that you probably haven't already thought of. Not knowing your situation, I can only mention the obvious like carers assessment, respite care etc. Of course so much of this depends on the services in your area of residence.
We are fortunate enough to have a community matron service and this has been of immense use, particularly as my OH's needs are mostly medical. Do you have anything like this? Have you support from the voluntary sector eg Admiral Nurses? I think you sometimes have to push hard for services and help. Trouble is, we are often too exhausted to do it.
Hi secrets22
Just wanted to give you a 'virtual hug' and to reiterate the good advice that other members have given to you about how you are feeling right now. There's nothing more I could add to that. Looking after yourself too is so important, so try to find your voice to ask for whatever help you can get, though I know it can be an extra struggle when you are self funding. But that doesn't mean you can or should be abandoned with no help, because someone is going to have to provide it if you go under. Very best wishes, and I do hope that tomorrow will feel brighter, but please do help things along as best you can and refuse to give up on getting some respite at least.
thank you all for your kind words,it does help to have support even if from afar,i have just delivered a letter to the health centre voicing my concerns,and why do they withdraw services when someone goes in hospital,its ridiculous because it means going through the same old pulava to get the district nurses on board again,a waste of resources and a waste of time.
David has been out of hospital over 3 weeks now and not a whisper from a doctor or nurse,i find it outrageous,its like he's been forgotten,and this is the second time I have had to put pen to paper to get any results.
It's so frustrating isn't it, especially when you are exhausted but you have to keep fighting. I really hope things change more in favour of carers because without us, everything would fall apart and it would end up costing the country even more money. It's very short sighted. I know you are up against it at the moment but is it worth contacting your MP who can fight on behalf?
It's all so very heart-breaking secrets22 and one of the reasons I treasure this site/forum is that we can voice out our concerns without holding back. An almost guaranteed response is given by members who understand completely how you are feeling. There is no doubt,you must use your GP,local Social Services and whilst biting the bullet,even try as suggested organisations relevant to your husbands condition. You seem such an eloquent lady that you may not "like" to ask for help,but you have the power to communicate to others,how much you've been doing by yourself. Please do come back....we care,we really do. Best wishes.
Know exactly how you feel. In spite of people giving advice to contact services, It was almost impossible for me see an Occupational Therapist for advice re shower, our services come through Adult Social Services the. age UK. In the end I phoned the dementia unit at the hospital directly and they did help. We were also told that any equipment we needed would have to be purchased by ourselves. I queried this with our local MP and asked why there was such a disparity in services between different areas. Still to hear back about this. Just keep going, you will have better days especially with lighter days coming. Thinking of you and hugs, stick in there, you will be appreciated.
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