Information and Advice

Hospice expands its community support following grant award from The Beaulieu Beaufort Foundation

25 November 2020 by Melanie Stone

Tricia Kelly – Oakhaven Community Registered Nurse

Oakhaven Hospice is proud to announce that they have extended their care within the community through the appointment of a registered nurse to support those within care homes who are facing the end of life.

“We are thrilled that the generosity of The Beaulieu Beaufort Foundation, has enabled us to create this new role” says Andrew Ryde, Chief Executive of Oakhaven Hospice “this post will mean that we are able to further extend our services to nursing and care homes, allowing us to support those who care for the residents as they approach end of life. We are incredibly grateful to the Beaulieu Beaufort Foundation for their continued support of the Hospice.”

This role will complement our existing community team of clinical nurse specialists and registered nurses, who, along with the provision of personal care from Oakhaven Care, work tirelessly in ensuring those who wish to remain at home or in their care home can, do so in a supportive and cared for environment. It will help ensure they are able to die in the place of their choosing rather than as emergency admissions into hospital.

Lucy Smith, Oakhaven Head of Nursing said “this has been a real opportunity to strengthen our community nursing team and to help us support care homes as they care for their residents. This role will develop strong links with all care homes and be a direct link to the hospice for the home. They will work with the staff both at the bedside caring for the patient but also in terms of developing educational support programmes.”

During Covid-19 Oakhaven has had to adapt to find new ways in which to support its patients out in the community through the use of technology as well as traditional visits. Oakhaven’s work in the community has increased significantly since the start of the year and is now providing in excess of 2,500 hours of care every month for people facing end of life. This could be through the night or during the day depending on their needs. This role will really help in increasing the level of support we can provide to the care and nursing homes.

Life After Lockdown- The ‘New Normal’

3 August 2020 by Steph McClean

By Steph McClean, Psychotherapist

We have been though a lot this year. 2020 has not turned out the way any of us could have possibly anticipated. We have had to tolerate crisis and change to almost every area of our lives. We find ourselves collectively on a path none of us have chosen, a path that has presented us with challenge, fear, change and re-evaluation.

And now we find ourselves at a new stage within this unprecedented journey. Our paths have now changed. We have options. New forks in the path ahead, and we are not entirely sure which one, if any, to take.

We are now in a space of transition. We stop walking, and look back at the path behind us. We consider where we have been, and what we have experienced: Lockdown.

We look at the paths ahead and wonder which ones to take and what they may lead to. It feels uncomfortable, we may feel anxious, concerned that it’s too soon, and worried about the continuing risks. Or perhaps we’re pleased to finally have a choice of our own, and look forward to reconnecting with the world.

William Bridges wrote extensively about coping with transitions. He talks about the 3 stages we go through when managing transition:

1.Endings

In order to move forward, we need to let go of old aspects of our life that are no longer helpful. This can be positive as we finish with things we never wanted, like being isolated from our loved ones or not being able to go out and enjoy ourselves.

But endings may also mean we are letting go of things that were helpful. Perhaps we felt safe in lockdown, glad to be furloughed so we didn’t have to risk infection or were able to spend more time being at home with our children.

2. Neutral Zone

This is the place many people find themselves in at the moment- an ‘in-between’ space where we regroup, explore our options and think about what may have happened previously.

This might be an uncomfortable space to be, processing the experiences that brought us to this place and concerned about what is yet ahead. For others, it might be a space where we feel there is possibility for helpful and wanted change, where we are able to think about what needs to come next.

During COVID-19 everyone was expected to follow very clear government guidelines. Now as lockdown is easing, the guidelines are more complex, encompassing a variety of choices based on personal health, geographical area and ongoing change in the ‘R’ value. This may feel empowering for some and overwhelming for others.

Help with ‘being in neutral’

If you are finding this transition difficult, here are a few guidelines to help you try and work through this. It might be helpful to get a pen and paper and write down each bullet point, or perhaps use these as points of discussion with a trusted friend or relative:

Reflect– Take time to reflect on your experience of lockdown. How has it been for you? Think about the challenges and benefits, how it’s made you feel and what thoughts and feelings you are left with when you do this.
Review– What needs to happen next? How are you going to ‘ease’ your way out of lockdown? Do you need to connect in with others? Do you need to think about anything practical that you need to do? Are there opportunities you now have that you didn’t have before? Think about decisions you may need to make about how you may want to socially distance or where you feel comfortable going.
Plan– What do you need to do to make this happen? Are there arrangements that need making? Eg. buying a mask so you can go to a shop, or forming a social ‘bubble’ with a friend or family member who is on their own. Make a list of priorities of how this might happen, and consider if this is realistic. Consider what might have to happen if further restrictions are brought back in?
Picture– What does this look like? Think about how you want the next bit to look and what is your aim and why? Are there things you may need to accept as part of this picture that are not what you’d choose? How will you accommodate them? Try and get a fully thought out vision of what you want the next bit to be.
3. Moving forward-This is a place of new beginnings, when we start to put into action what the next bit looks like. It may take some adjustments when we have to deal with unforeseen issues.We will need to communicate more and start connecting in with others around us and recognising that others will have also been through their own journey. How do our experiences compare? We may need to maintain some resilience in the face of this new direction, but we may need to pace ourselves and build in some time to rest and re-evaluate.We may also be very aware that we don’t know what is yet to come. One thing Covid-19 has highlighted is that we never really know what is around the corner. We may grieve the past idea of ‘normal’ and the losses that change brings, and at the same time, try and embrace whatever this ‘new normal’ is.

There is a sense that we will be slowly re-joining the world again. Our paths will become less lonely as we take the fork in front of us, and we start to become aware of the paths others have trodden around us. We see them through the trees and up ahead and we think about where they have been and if they are going the same way.

We return to looking at our path in front of us. We don’t know what is ahead. How many rocky moments we are yet to endure, smooth downhill slopes we stroll down with ease, uphill struggles we will climb or incredible views we are privileged to witness. All we can do is stay true to the foundations of who we are and what is important to us. So with one eye on the horizon, we lace up our boots and start to put one foot in front of the other…

William Bridges transition model: https://wmbridges.com/about/what-is-transition/

Lockdown restrictions: BBC: https://www.bbc.co.uk/news/explainers-52530518

Guidance on the ‘R’ value: https://www.gov.uk/government/news/government-publishes-changes-to-growth-rates-and-r-value

Please do keep checking online major media outlets for up to date guidance for continuing changes to lockdown restrictions in response to the ongoing changes with Covid-19.

Anticipatory Grief – What Is It and How Do We Recognise It?

17 June 2020 by Steph McClean

By Mette Nielsen, Counsellor.

Every one of us will be experiencing the loss of a loved one during our lives. Some of us will be carers for a short or a long time due to illness or a life limiting condition. We may experience feelings and emotions which we find distressing and difficult to manage and this is known as ‘anticipatory grief’. Recognising anticipatory grief may help to make the most of the time you have together.

What is Anticipatory Grief?

You may mourn the loss of the person you are caring for even while they are still alive. The grief you are feeling may not only be for the person who is dying but the life you currently lead. Your life and relationships may have changed dramatically when you became a carer. You will have taken on a great responsibility and may find you are no longer able to plan things, which can be stressful and might leave you feeling guilty. You might have fear, anxiety or panic about “What is going to happen next?” and “How will I manage?” which can take a great toll on your mental wellbeing and stability. This may lead you to feeling unable to concentrate or being distracted. These are normal when you experience anticipatory grief.

The process of anticipatory grief is described as three stages:

Experiencing shock about the upcoming loss
Denying the reality of the loss
Eventual acceptance

What are the signs of Anticipatory Grief?

Anticipatory grief is a normal part of mourning when someone is expecting a death. The signs of anticipatory grief are similar to the grief we feel after someone has died. You may be feeling a whole host of things like anger, frustration, desperation, depression, anxiety, isolation, panic, insecurity, guilt, shame or even being fed up. These are all normal and natural to feel as part of the process.

Not everyone will experience this or you might feel reluctant to talk about how you feel because you may think that it will take the focus away from the person who is dying. Although you may feel it is inappropriate to say it out loud, you may wish that it was all over. It is also natural to feel like that. It is important to remember that we all experience grief in different ways.

Anticipatory Grief includes some differences to the grief we feel after someone has died, and you might experience the following:

Increasing concern for the dying
Imagining or visualising what the person’s death will be like
Preparing for what life will be like after a loved one is gone
Attending to unfinished business with the dying person

How can we best use this time?

This time can be particularly helpful for various reasons as it allows time to prepare and time to talk.

Allow feelings of grief to help you prepare – understand the stages of grief, how they may affect people differently. Express your feelings through talking to a friend or family member, a counsellor or a spiritual or religious mentor.
Educate yourself about what to expect – research a particular illness or condition or read about other people’s experiences and how they have overcome similar difficulties.
Connect with others may have similar experiences – contact local support groups or charities. Being able to talk about and share your experience with others who have some understanding will help to reduce stress and feelings of isolation and loneliness.
Enlist help and continue to live your life – Reach out to services such as hospices and other healthcare providers for help and advice. They can offer professional support and guidance with additional care, funding, and other financial, medical and psychological support you may need.
Include your friends and family- keep them updated on what is going on and don’t forget to ask for help and support from them too.
Create moments your loved one can enjoy – looking at photographs, reminiscing of fond memories and telling stories, playing your favourite games, listening to your favourite songs together.

You will be experiencing feelings and emotions which may be distressing and difficult to manage, however, you can minimize the anxiety and stress of anticipatory grief by staying physically and mentally healthy. Here are some helpful practices and you can do whatever you feel works best for you:

Manage your stress
Be realistic
Give yourself credit, not guilt
Take a break
Eat a healthy diet
Accept that there will be changes in your loved one’s health status
Know you aren’t alone

Helplines and information:

www.mind.org.uk

www.cancerresearch.uk

https://www.thegoodgrieftrust.org/need-know-info/pre-bereavement-advice/

Psychology Today: https://www.psychologytoday.com/gb/blog/stonewall-strong/201908/how-resilient-people-get-through-anticipatory-grief

Planning for the Future: things to consider

17 June 2020 by Steph McClean

By Karen Silverthorne

It seems there are so many extra difficulties to face at the moment and the idea of making end-of-life plans may be something you find difficult. But by giving consideration to this now, it can lessen anxiety if you become unwell and can help those you are close to if you’re not in a position to make your wishes known.

For example, a lasting power of attorney (LPA) is a document that allows the person you appoint to help you make decisions or to make decisions on your behalf. There are two types of LPAs:

Health and Welfare LPA: this can be used to make decisions about things like life-sustaining treatment, your medical care, when to move to a care home or even your daily personal care routine. A Health and Welfare LPA can only be used once you are no longer able to make your own decisions.
Property and Financial Affairs LPA: this covers decisions about your finances, such as managing your bank account(s), collecting benefits and paying bills, as well as about your property, such as when to sell your home. If it is what you want, it can be used from the time it is registered and means that the person you appoint can help you with decisions or can act on your behalf.

You can appoint more than one person in an LPA. You should think carefully about the person or people you might want to nominate.

A solicitor will draw up a Power of Attorney for you, but you can also download a form from the government website: https://www.gov.uk/power-of-attorney for free. Once this is completed, it has to be registered with the Office of the Public Guardian. There is a charge for registration.

It may be, should you become seriously ill, there are some types of life-sustaining medical treatment you would want to refuse, such as being put on a ventilator or receiving cardio pulmonary resuscitation (CPR). Provided you are 18 years or older and deemed to have sufficient capacity to decide your own medical treatment, you could make a Living Will or Advance Decision so that healthcare professionals are able to follow your wishes.

Unless your requests are written down and signed by you and a witness, they cannot be carried out, should you not be in a position to make or communicate those decisions yourself. It is important to state clearly which treatment(s) you want to refuse and in what circumstances. You might want to talk to your GP to discuss options before you make up your mind. You can make a Living Will through your solicitor or the charity Compassion in Dying has a form you can use for free on their website. There is also advice about who to give a copy of your Living Will to once it has been written and signed.

Making a will is another way to ensure that your wishes are carried out after your death because you can write down what you want to happen to your possessions, money and property. You can write a will yourself, but if it isn’t straightforward, it might be prudent to get legal advice. If you pass away and you don’t have a will, the law will decide what happens to everything you own.

As many of us rely heavily on technology these days, you might also want to ensure that anything you store digitally such as photos, or accounts you might have such as eBay or PayPal, will be available to those who you would like to have access.

The Law Society recommends keeping a Personal Assets Log that includes information about your digital assets. You might want to store information on a USB drive or set everything out on paper and keep the USB or document in a safe place known only to you and those others you wish to tell.

The Bereavement Advice Centre gives more information about dealing with digital information and the British Psychological Society (BPS) has produced a video on digital legacy planning.

Funeral arrangements are something else you might want to plan in advance, although with the current Covid-19 pandemic, all funeral arrangements are subject to guidance put together by the government and can be found their website: www.gov.uk.

If you make plans now, it can give you a sense of control and cause less anxiety both now and in the future.

Bereavement Advice Centre, digital legacy: https://www.bereavementadvice.org/topics/registering-a-death-and-informing-others/digital-legacy/

British Psychological Society, video on digital legacy planning: https://www.youtube.com/watch?v=_Y3JSpGkXFI&feature=youtu.be

Compassion in Dying: https://compassionindying.org.uk/making-decisions-and-planning-your-care/planning-ahead/

Covid-19: Guidance for Managing a Funeral during the Coronavirus Pandemic: https://www.gov.uk/government/publications/covid-19-guidance-for-managing-a-funeral-during-the-coronavirus-pandemic/covid-19-guidance-for-managing-a-funeral-during-the-coronavirus-pandemic

Make, Register or End a Lasting Power of Attorney: https://www.gov.uk/power-of-attorney

Making a Will: https://www.gov.uk/make-will

NHS: https://www.nhs.uk/conditions/end-of-life-care/advance-decision-to-refuse-treatment/

Facing Fear: How to Cope with Health Anxiety during the COVID-19 Pandemic

6 May 2020 by Steph McClean

By Steph McClean, Psychotherapist

Throughout life, most of us keep an eye on our health and wellbeing. However, there are times when we are more anxious about our health than others. It might be that we need to go back to our GP for a persistent issue, or we need tests or scans to see what is happening.

Now we are in a more extreme situation, with a global pandemic of unprecedented proportions nobody has ever experienced before. The country is in lockdown, and many of us have to shield and isolate for long periods of time in order to keep ourselves safe.

Routine medical procedures and treatments may have been cancelled and some people who are vulnerable might choose not to attend appointments for fear of risking contracting COVID-19. We may know someone who had it, currently has it or perhaps even someone who may have died from it. The news and media are constantly updating us and discussing it.

It seems to be all anybody can talk about.

This can create high levels of anxiety about health and a preoccupation with thinking about the virus and avoiding it at all costs.

Rational Anxiety

It’s important to recognise that anxiety is a perfectly rational response to a crisis situation, particularly if we are in a group who are at risk. It is hardwired into our survival system to want to react and respond when we know there is a threat. Anxiety is an understandable reaction at the moment, and it encourages us to behave in ways that keep us safe in the current circumstances.

For example:

Wanting to isolate or stay at home
Focusing on keeping our environment clean and hygienic
Communicating more with loved ones
Seeking reassurance
Monitoring our sense of wellbeing
Supporting and checking in with vulnerable relatives
Keeping up to date on current advice, guidance and updates from the media
Keeping your distance from others when outside your home

Problematic Anxiety

The difficulty with anxiety is that it can become problematic. Unfortunately the survival system in our bodies is not able to detect between actual danger and a perceived danger. If we get to a stage where our perception of danger is larger than the risk of actual danger, we end up becoming overwhelmed by our anxiety.

This may mean our mental and physical responses become heightened and stay heightened for longer periods of time. When this happens, our anxiety becomes more dominant and in turn we experience an increasing amount of unhelpful behaviours, difficult feelings and physical symptoms.

Signs of problematic anxiety include:

Changes to sleep patterns- you might find it difficult to get to sleep, or wake early in the morning
Mood changes- you may become irritable and bad tempered
Changes to appetite (including nausea, lack of appetite or overeating)
Increased alcohol or smoking
Fatigue
Lack concentration
Body aches and muscle tension
Feeling restless- like you need to constantly keep moving or doing things
Grinding your teeth or experiencing jaw ache and headache
Heart palpitations
Increased rate of breathing
Panic Attacks

Health Anxiety is a specific condition. This is where the above anxiety behaviours can be experienced alongside health-related anxiety behaviours. These tend to centre around fears of being or getting ill that are excessive or create difficulties in everyday life. These behaviours can be obsessive or compulsive, meaning you may feel you have no choice. They can interfere with relationships, work, and other aspects of normal functioning.

Some of these behaviours include:

Refusing to leave the house, even when allowed.
Obsessive checking of media- having the news on all day, constantly checking online, looking up symptoms repeatedly.
Constant body monitoring- taking your temperature excessively or worrying about every little feeling in your body.
Obsessive hygiene behaviours- constant or excessive hand washing or domestic cleaning, particularly of a certain area.
Intrusive or repetitive thoughts about health
Constantly thinking you might die or be dying
Inability to accept reassurance from others, including healthcare professionals
Hypervigilance- closely monitoring those around you for perceived symptoms or signs of illness (coughing is a common one at the moment)
Paranoia- monitoring other people’s behaviour that you believe is a risk to you or others (eg. checking people leaving their house, not observing social distancing or not wearing PPE when in public).

We may briefly experience some of these more problematic aspects of anxiety, particularly health anxiety during the current COVID-19 Pandemic, which is to be expected. These aspects of anxiety will often pass within a few weeks. It is also important to remember that according to WHO: “Illness due to COVID-19 infection is generally mild” and “for most people in most locations the risk of catching COVID-19 is still low” that only 1 in 5 people who do catch it need hospital care.

Anxiety can be managed in the following ways:

Regular sleep pattern
Regular meals
Taking daily exercise, even if it’s a short walk around your garden
Daylight and fresh air- try and keep curtains and a window open
Meditation and mindfulness
Gratitude Journal/ Writing
Yoga and relaxation
Breathing exercises
Regular routine
Talking to others about how you feel
Listening to music
Doing a creative project
Online/Peer support groups

If you are experiencing excessive anxiety that is distressing, lasting longer than a few months or frequent panic attacks, please contact your GP or mental health professional.

Guides to above suggestions:

Meditation/Relaxation Apps: www.calm.com www.headspace.com

NHS Yoga Guide: www.nhs.uk/conditions/nhs-fitness-studio/yoga-with-lj/

Guide to good sleep: https://www.nhs.uk/live-well/sleep-and-tiredness/how-to-get-to-sleep/

Guide to Gratitude Journals: https://positivepsychology.com/gratitude-journal/

Helpful resources for managing anxiety:

www.nhs.uk/oneyou/every-mind-matters/anxiety

www.nhs.uk/conditions/stress-anxiety-depression/ways-relieve-stress/

www.nhs.uk/conditions/stress-anxiety-depression/moodzone-mental-wellbeing-audio-guides/

https://www.mind.org.uk/information-support/types-of-mental-health-problems/anxiety-and-panic-attacks/self-care-for-anxiety/

References:

www.nhs.uk/conditions/health-anxiety/

www.anxietyuk.org.uk/anxiety-type/health-anxiety/

www.who.int/news-room/q-a-detail/q-a-coronaviruses

Organising a Funeral During the Covid-19 Pandemic

29 April 2020 by Steph McClean

By Paul Hatchard, Chaplain

When a loved one dies, one of the last things we do for that person is to arrange their funeral. Although this can be upsetting, making these arrangements can play an important role in the grieving process as we try to come to terms with our loss.

As with so many things at the moment, current restrictions mean that the way a funeral is organised has had to change. This is the same whether a person has died due to Covid-19 or any other causes.

When you contact your funeral director to discuss the arrangements, they will be able to tell you about the restrictions that are sadly in place, which can vary between funeral firms and also between crematoria.

Be assured; funeral directors will work hard to accommodate all that you ask for, but they are also required to do all they can to minimise the risk of infection both to the group of mourners and to all those key support workers involved in organising the funeral. Therefore, when you contact them they will be able to advise on such things as:

whether or not it will be possible to visit your loved one in the Chapel of Rest;
whether limousines or transport other than the hearse can be provided;
whether the family are able to act as coffin bearers;
whether the curtains are able to remain open during the service.

In line with Government guidance, funeral services should only be attended by immediate family who are not in a high-risk category, not self-isolating and do not have any symptoms of Covid-19. Advice is to have as small a group as possible to attend the service and many funeral directors are limiting this to ten people or less.

Those who do attend will be asked to follow social distancing guidelines unless they are there with members from their own household. This means staying two metres apart from other people and not being able to embrace or hug them.

Of course these restrictions can be upsetting for the bereaved family and it may feel that the funeral you want for your loved one is not going to be possible.

Do remember that once restrictions have been lifted, it might be possible to hold a memorial service to celebrate the life of the person you have lost and perhaps at that time you can include some of the things you think are missing from the funeral. And of course, you will be able to invite everyone who would like to attend.

For those unable to attend the funeral, there are some things that can be done to make people feel a part of the service:

Discuss with the funeral director if they can live stream the service;
Have someone film it or take photos to share afterwards;
Give everyone you would normally contact, the date and time of the funeral so that people are able to mark the occasion in their own homes should they wish to do so. This could be by lighting a candle, reading a prayer or playing a significant piece of music.

People can be asked to share a memory about the deceased which can be collated and shared at some future point, perhaps at a memorial service.

Below are some further links which you may find helpful:

Cruse: https://www.cruse.org.uk/coronavirus/funerals

Government Guidance on Funerals: https://www.gov.uk/government/news/guidance-updated-to-support-the-safe-management-of-funerals

National Association of Funeral Directors: https://nafd.org.uk/funeral-advice/

Also, for those who have been cared for by Oakhaven, the Oakhaven Chaplaincy team is able to assist with funeral planning and leading of services. For more information ask for a Help Planning a Funeral booklet and/or email FAS@oakhavenhospice.co.uk or contact the Oakhaven Chaplain on 01590 670346 or paul.hatchard@oakhavenhospice.co.uk