When caring for someone who has a life-limiting condition, you might be thinking about what their treatment and support is going to look like as their condition progresses. Some people who are at the end of their life express a wish that, where possible, they would like to die at home. For more information on supporting someone who wishes to die at home, you can read our article on it here.
However, it can be helpful to consider whether the person you care for might benefit from hospice care or care in a nursing home. Supporting someone to transition into a new environment can be incredibly challenging and emotional but there are some things which you, as their carer, can do to make the transition as smooth as possible.
Having the conversation about transitioning into residential care
The person you are caring for might choose to transition into a nursing home or hospice themselves, or if you have been granted Power of Attorney, it might be a choice you are making on their behalf. Speaking to the person you care for and involving them in the decision-making process as far as possible before any decision is made will be important, ensuring they feel respected, listened to, and involved in their care.
Sometimes, the person you are caring for might want to stay at home, but as a result of their needs, or the home not being suitable or your own ability to maintain the caring role, this may not be possible. Whilst this can feel a very difficult place to be in, having open and honest conversations, perhaps involving your GP or current health care team, will make sure everyone feels involved, and everyone’s wellbeing is considered. Most importantly, it will ensure that the person you are caring for knows that decisions are being made with their best interests at heart, and to ensure their specific needs will be met.
This might also be the stage that you want to think about creating an Advance Care Plan (ACP) to give the person you are caring for the opportunity to express their wishes regarding their future care and support, including medical treatment, while they have the capacity to do that. An ACP is not legally binding, but it will ensure that those supporting the person you care for will be aware of their wishes regarding different aspects of their care. It can be drawn up with the help of your healthcare team and is a document that can evolve and change over time. An ACP may also contain an Advanced Decision (sometimes known as a Living Will). An Advanced Decision is a legally binding document which is created whilst someone still has capacity and refers to the right to refuse certain medical procedures at the end of life.
Choosing the right place for the person you care for
If thinking about supporting someone through the transition into a residential care home, an important decision to be made is where would be most suitable. Both a nursing home and a hospice are able to provide specialised end of life, palliative care so it can be important to do your own research to find out the services they offer and which residential setting feels most comfortable for the person you care for.
Choosing between a nursing home or a hospice will depend on the needs of the person you are caring for. A nursing home is a residential setting where older adults can receive 24-hour care from trained health professionals, often for long-term health conditions or disabilities. Personalised end of life, palliative hospice care is available in a nursing home. Care within a hospice is designed specifically for those facing terminal illness or a life-limiting condition and offers palliative care to provide comfort and specialist support during the end of life. For more detail on this, you might read our article on understanding the role of a hospice.
If your hospital is involved, they can offer you advice and where necessary will make a ‘palliative discharge’, ensuring that your local palliative team will be there to support you. Your GP or specialist nurse can also offer their recommendation based on the diagnosis, prognosis and the needs of the person you are caring for.
Funding end of life care
There are a number of ways to access end of life care, several of which are funded. Hospice care is free when someone has been referred through a consultant, GP or nurse, and is paid for through the NHS Continuing Healthcare (NHS CHC) plan. It is however important to note that places in a hospice are limited. Nursing care in a residential home for someone with a terminal diagnosis can be offered free for at least 12 weeks through NHS CHC, when another assessment is then made. There is also an option to fund all or part of the cost for private palliative care. Your health team and local social services are able to offer support in navigating the financial aspects of transitioning to a residential care home.
Helping the person you care for to prepare for the move
Transitioning into a residential setting is a significant change for you and the person you care for. Preparing for this change in advance can help them to transition as smoothly as possible. Having conversations about moving early will allow you and the person you care for to express any fears or concerns and talk about what might bring them comfort once they have moved, like planning visits or choosing what items to bring.
It can also be helpful for some carers to visit the nursing home or hospice before the move to get a sense of the place, the rooms, the other residents and the care team. Going for a visit will help to also establish relationships early on, and speaking to the staff about the preferences, beliefs, wishes and needs of the person you care for will also be helpful. If the person you care for is not able to come with you, it may help to share photos of the home with them, to help familiarise them with their new space.
When the time comes to move in, helping the person you care for to pack and involving them as much as possible in the whole process will ensure they feel empowered and feel a sense of ownership over the experience. Taking personal items will create a familiar and comforting environment. Personal touches such as special photographs, favourite blankets, or cherished possessions will significantly contribute to the emotional wellbeing of the person you are caring for during their stay and make the transition easier.
You might make sure they have important numbers and other ways to keep in touch with their family and friends at hand, so they know they will be still connected.
Establishing a routine
Developing a routine is an effective way to build a sense of familiarity for someone who is transitioning into a residential setting. To create a routine, it can be helpful to establish a schedule for visits, calls and recreational activities which will help the person you care for to continue to feel connected to their support network. Overall, this familiarity can provide a sense of security and continuity, making the transition more manageable for both you and the person you are caring for.
Coming to terms with a new situation
Supporting someone you are caring for to transition from home into a residential setting at the end of life can be a hugely emotional time, both for you and the person you are caring for. You will be adjusting to lots of changes to your routine and to your identity as your caring role evolves. This will naturally bring up many different thoughts, feelings and emotions, and it’s important to acknowledge and allow those feelings to be expressed. Many carers also tell us that during this transition period, they have experienced a feeling of grief.
It is common for carers who make the choice for the person they care for to transition into a care home or hospice to feel some guilt, especially if it was a decision that went against what the person they care for wanted. It’s important to know that a decision like this may never feel ‘right’ or be easy to make and our article on Carer’s Guilt might be a useful resource.
It can also be reassuring to know that you are not alone during such a challenging time, and there is support available to you. Whilst everyone’s situation is unique, other carers have also been through similar experiences and you might want to draw on the support of a peer support group, like the Carers First Facebook group. These groups are places where you can share what is going on and feel understood, reducing some of the emotional stress associated with supporting someone you are caring for as they transition to a residential care home or hospice at the end of life. For more specialist support, your GP or palliative care team will be able to advise you about counselling and therapies you can access.