Caring for a Partner/loved one with Stroke & Aphasia

When facing the possibility of caring for a partner /loved one who has suffered a stroke several things need to be taken into account. These will include making a decision about your own financial situation, paying bills, paying for adaptions to your home, stress management, your own well- being and let's not forget emotional ties. As Chris had a separate bank account to me I needed to gain access to his money. I contacted his bank but they were not interested in supporting me. Eventually after asking for support from different places I discovered that I would need a legal document to gain access to his money. I contacted the Office of the Public Guardian (where The Court of Protection is based) to start the process of being appointed his deputy. I had to complete forms and was required to provide evidence from Chris's Consultant or GP about his condition. They usually do charge a fee, however, I was able to prove hardship and the fee was waived. You can get help to complete the forms of you need it and you can use a Solicitor, but again you will be charged a fee.

Only you will know what challenges will need to be faced as each person's situation is different although similar. We all need money to survive and let's face it, the reality is that carers allowance does not go very far! If you decide that staying in employment is the only road for you take into consideration all aspects. You will need to think about asking for some advice as if you earn 'too much' money you will not get support for paying for adaption's to your home and will only get carers allowance if you earn a small amount. Any support that is 'means tested' will take into account your earnings. The other consideration maybe that you need to work as it will provide you with a 'break' from your home circumstances. You may take the view that you want to care full time for your partner/ loved one. The Citizens Advice Bureau will offer support on what can and cannot be claimed in your own circumstances. Either way, you are faced with making decisions.

Support whilst in hospital should be offered to both the stroke survivor and family members who may be involved in care, especially the person's partner/ loved one. Chris was assessed by Social Services as needing carers three times a day during the week; I care for him at all other times. Before Chris left hospital I was asked, 'Is he coming home?' My immediate reaction was to reply, 'of-course'. It has only been recently that I realised that many people feel that they cannot cope with someone who is severely disabled, this fear being compounded by the lack of communication (aphasia). This may be the case in your own circumstances. You will make the best decision in your circumstances. I visited Chris everyday without fail whilst he was in hospital and did not consider he would not come home. I would also add that I was very frightened when I knew that Chris was coming home, asking myself what do I do' It took both of us months to adapt to a new way of living, but adapt we have, taking situations one day at a time.

Bear in mind that you should review your circumstances on a regular basis as both your own and partners/ loved one needs will change over time.

Good Luck!
Janet and Chris

Direct Payments

Chris is given direct payments to pay for his assessed care needs by the County Council where we live as they have a 'duty of care' towards him. I manage these payments which allows both of us to decide when care takes place, who cares for him and other aspects he may need for his care. Although, it takes a while to set up and I needed to open a separate bank account for this process, it now runs smoothly. I am required to account for his money and send in a quarterly record with proof of incoming and outgoing. This system allows for freedom of choice within the confines of money provided for care.

Care Agency

When selecting a Care Agency you will need to take several things into account. It goes without saying the first thing will be the type and quality of care they will provide as stroke/aphasia is a specialist area and currently training in these areas is sparse. Another is costs, the charges they make for care. If you are on direct payments you will receive a certain amount of money for hourly paid carer. I have found that some Care Agencies will want to charge more that Chris's allowance. In fact, out of 20 local Care Agencies only 3 would accept the direct payment rate as their charge. Why is that? I still do not understand why this is not regulated in some way to stop exploitation of people who are already vulnerable (this is my own view; you may have a different one).

The Care Agency that Chris uses is local to where we live, they do accept his direct payment for his care and are trained by me ( with regard to Chris's speech, writing and reading) and by Chris's private Physiotherapist (for his walking and muscles maintenance needs).

Some supporting organisations

Citizens Advice Bureau: www.citizensadvice.org.uk

Carers UK: The voice of carers, who offer a great deal of support as well as lobby Government on behalf of carers: www.carersuk.org

Office of the Public Guardian: www.publicguardian.gov.uk

Supporting Stroke is a UK based independent help and resource website for stroke