Carers Stories: Jo’s Story
“At the time of my husband’s diagnosis life became very much medicalised”
My husband was 37 when he was diagnosed with Duke C Bowel Cancer and we had three children ages 7, 6 and 3.
At the time of my husband’s diagnosis life became very much medicalised: we attended hospital appointment after appointment; hospitalisation as he underwent surgery and chemotherapy; and slowly as his physical needs were addressed the emotional impact of the diagnosis started to hit hard. A cancer diagnosis is devastating at any age, but as my husband was so young (unusual for bowel cancer). This raised many different issues as I had to juggle the needs of my husband’s at the same time as my children’s. His need was for quiet whilst theirs was to live a “normal” lively childhood.
The cancer carers group, organised by The Carers Centre became my life line. Meeting once a month with other carers enabled me to discuss any issue affecting me, my partner and children in a safe environment. All the group members had sometimes complex, mixed and difficult emotions to cope with, but the group provided the opportunity to express these whilst not being judged or criticised. Dealing with the impact of cancer is very isolating especially as I didn’t have any one else amongst my friends who were having the same experience as me.
“Cancer and Death are still very much a taboo subject in society”
In the group we could discuss the fears we had including the possibility of our partners dying if treatment failed, without the silence response that often can occur when talking about death. Cancer and death are still very much a taboo subject in society and yet in the group we all understood and accepted what each of us were saying. Black humour was accepted and a way to help us cope. The group made me feel “normal” at a very surreal time.
In addition, we shared ideas about how to address the needs of the children, what and when to tell schools, relatives and how to cope with other members of the family, their emotions and offers of practical difficulties, often a tricky one!! We were also lucky enough to have a speaker who could guide us through the maze of welfare benefits, a huge concern for me as my husband was self employed and the cancer treatments interrupted his ability to work. As the group developed we were all able to enjoy the benefits of a massage, along with tea and sandwiches. Bliss! A cup of tea made by someone else cannot be underestimated when you’re on 24 hour care duties! When funding was stopped there was concern that the group would fold, however Sara, the Support Worker, set up a self help group, led by a volunteer so our group could continue meeting. The massages continued, the tea still came and we were able to keep our sanity and share our issues.
* The details here have been edited and altered to protect the carer’s anonymity. The photo is for illustration purposes only and is not the carer used in the story.
Running The Modern Funeral in Brighton, I’ve encountered several myths about my business and what a funeral involves. Discussing this with The Carers Centre we decided to work to dispel these assumptions surrounding the funeral industry, as they can ultimately cause people emotional and financial harm. We want to address issues of vulnerable people getting into upsetting and unnecessary debt. Here are some common misunderstandings:
Myth 1: I have to use a funeral director
You are in charge of what happens following a death. Many funerals happen as Self Help, Self Assist, D.I.Y (Direct It Yourself) or Home Funerals. There are flexible death care professionals out there who can help you with some of the jobs if you wish perhaps just supporting you with the paperwork, transport, or boday care. There are plenty of small tasks to arrange flowers, printed materials, booking a venue for the after party, taking on helpful jobs in the critical weeks surrounding a funeral can help with the bereavement process too.
All the answers don’t have to come from a ‘professional’. They can come from your family and friends, from you. Trust your intuition.
Myth 2: The body must be embalmed.
There is no legal requirement or medical necessity for the deceased to be clinically embalmed or sutured. The body of your loved one can stay at home you can wash and dress them there. Who better to care for your loved one than yourselves. It’s entirely safe, hygienic, and avoids unnecessary expense.
Myth 3: The Ceremony must be officiated by a religious leader.
There are lots of secular celebrants and interfaith ministers who can help you put an appropriate funeral service together, or perhaps you could put the ceremony together yourselves, collect some readings and music, writing and delivering a life story in your own words with your own voice.
Myth 4: The amount I spend reflects how much I loved and respected the person who has died.
Exiting the material world seems to have become a consumer act. When preparing a funeral, you can be presented with an array of add-ons, Extra services, ornaments, venues,but these quickly become expensive and in no way act as a measure of your love.
Funerals currently cost an average of £3500 and rising, but by taking control yourself you can have the best experience possible for much less.
You can have a simple coffin of wicker, bamboo or cardboard, or you can make and decorate the coffin yourselves. You don’t have to use a fleet of black cars even a family estate car will suffice.
You can separate the practical and the ceremonial for example David Bowie opted for a direct cremation in New York for under $700, followed by a scattering ceremony in Bali at a later date.
Flowers can come from the garden; the order of service can be on a postcard.
These ideas can make the experience more personal and participatory, and you can even put together a crowdfunding campaign so people can offer support with direct contributions for the cost.
Funerals are perhaps humanity’s oldest tradition but this doesn’t mean they have fixed rules, rather that they are a thousand ways to say goodbye.
We are part of Brighton Death Forum and would welcome your contributions about how the way we approach funerals can help us have a healthier relationship with the inevitable. We can come together to challenge conventional norms and reclaim this important aspect of our lives.
by Tora Colwill of The Modern Funeral, Brighton.
This article appeared in the Autumn 2016 edition of Carers News
In this series of our blog we will be bringing you useful articles and information from back issues of our quarterly magazine ‘Carers News’.
This one is from our Legal Q&A session from Carers News Autumn 2015 with Greg Woods at SMR solicitors.
What is Lasting Power of Attorney (LPA)?
A power of attorney is a legal document where a person gives another person or persons (the attorney(s)) authority to make certain decisions on his or her behalf.
1. Types of LPA
There are two types of LPA:
A property and Affairs LPA, which gives your attorney authority to deal with your property and finances.
A Health & Welfare LPA, which allows your attorney to make welfare and health care decisions on your behalf, but only when you lack mental capacity to do so yourself. This could also extend, if you wish, to giving or refusing consent to the continuation of life sustaining treatment.
2. The Attorney
Any power of Attorney, where one person delegates authority to another is an important document; you should take care whom you appoint as they should be trustworthy and have appropriate skills to make what could be very important decisions. If you appoint more than one attorney, you can appoint them to always act together (jointly) or together and independently (jointly and severally) so that either attorney can act alone. You may even appoint them to act jointly for some decisions and jointly and severally for others. You may also choose to appoint a successor to your attorney, in case they die or otherwise cannot act for you.
3. When can your Attorney act?
The attorney will only be able to act when the LPA has been signed by you and your attorney and then certified by a third party (known as the certificate provider) that you understand the nature and scope of the LPA and have not been unduly pressured into making the power. The certificate provider will also need to confirm there has not been any fraud or another reason why you cannot make the power.
It must then be registered with the Office of the Public Guardian before it can be used. The financial LPA can be used when you still have capacity to act, as well as if you lack the mental capacity to make a financial decision. The welfare power can only be used if you lack mental capacity to make welfare or medical decisions.
4. Exisiting Enduring Powers of Attorney
Any enduring power of attorney (EPA) validly made before 1st October 2007, will continue to be able to be used but only in respect of your property and affairs. If you wish to give authority over your health and welfare decisions, then you need to make a separate Welfare LPA.
5. What happens if you have not made a LPA or EPA?
If you lack capacity to make a financial decision, then it may be necessary for an application to be made to the Court of Protection for an appropriate order, such as appointing another person to make decisions on your behalf. This is both costly and time consuming. Most care and treatment decisions can be made on your behalf without the need for a court application. However, if you wish to avoid potential disputes, you can give a person authority to make those decisions on your behalf by making a Welfare LPA.
Greg Woods runs free legal surgeries bi-monthly for Carers at The Carers Centre.
*Please note: the information was correct at time of going to print in Autumn 2015 – Please always consult with an attorney for the most up to date information.
If you require more information about legal issues concerning carers or to find out more about our legal surgeries, please do contact us at The Carers Centre.
A year on from the introduction of the Care Act, a review by Carers Trust for unpaid carers has found that the new act has made little or no difference to the 5.4 million carers in England. In some instances, carers hadn’t heard about the measures that had been introduced, which could support their needs and well-being as a carer. (more…)
Brighton & Hove City Council has just launched its carer digital resources for families caring for loved one. Carers can sign up to get the resources free, which are created by Carers UK.
The City Council has bought the license from Carers UK, so carers can sign up free then get access to the resources via mobile phones, tablets and computers. For more information see the web page by Carers UK.
Have you tried the carer digital resources? Let us know how you got on
You can also check out our Resources for Carers section.