Many patients and their families worry regarding how they will manage at home as their illness progresses.
Patients and families are often confused regarding any practical help or support they can access. We advise that patients and their families try to plan ahead as it can take a few weeks for hands on care support to be commenced at home.
The following is a brief summary of what may be available for patients to help support them at home for as long as they wish:
Equipment such as a hospital bed and mobility aids can be installed into the home once an assessment has been carried out by an occupational therapist. This may help with supporting a patient’s independence for as long as possible.
It is possible to remain at home with the support of carers in he community who can visit and help with bathing and heating up ready prepared meals. The maximum number of visits provided by care agencies is usually up to four times a day with some night sitting available, subject to availability. Your City Hospice nurse can refer you to social services when required. There may be a charge for services provided by care agencies depending on your financial circumstances.
Patients living alone with no family support may prefer to go into a nursing home if life at home becomes more difficult to manage independently.
The person can also choose to go into the hospice or nursing home as they near their end of life.
As patients enter the last few months of life they can be assessed for “fast track”. This assessment is completed by the district nursing service which if the patient is suitable can result in being offered free care by the Marie Curie hospice at home service or nominated agency. Again this is usually no more than four visits a day with two night sessions from 22.00-0700hrs according to availability.
Your Specialist City Hospice nurse will arrange via the GP injectable medication to be kept at home. This will include something to control pain, sickness, anxiety and chest secretions. The district nurse can be called to administer this medication when required should these symptoms occur. If a patient requires injectable medication on a regular basis then a syringe driver can be set up. Your specialist nurse can explain this in more detail and answer any questions you may have.
The hospice located in Penarth offers beds for patients resident in Cardiff and the Vale. They offer support as inpatients for symptom control such as uncontrolled pain/vomiting that has been difficult to manage at home. Or patients may choose to go there for their care in the last few days/weeks of life. Sometimes hospice beds are not available when required due to high demand, but we work together with the hospice to try our best to access the next available bed.
Nursing homes can also offer respite or end of life care for patients. Your City Hospice specialist nurse will continue to visit you if you choose to go into a nursing home.
City Hospice can help coordinate the above through their social worker, occupational therapist or specialist nurse.
Please do not decline care when offered. Due to the waiting times currently being experienced a crisis can often be avoided if a care referral is accepted earlier than you may think is necessary. Please be guided by your healthcare professional.
Accept mobility aids by an occupational therapist and consider living on one floor if stairs are a problem.
Talk things through with your City Hospice nurse – perhaps a nursing home placement may be the option of choice rather than experience an unplanned hospital admission. Sometimes respite care can also be offered in a nursing home.
There can be a burden of care on families whose loved one chooses to remain at home. Larger families may be able to organise a rota which allows family members to share the care and not get too tired or fatigued. Emotional support at this very difficult time is available through your City Hospice specialist nurse or counselling service.