Jane Teder, Hospice in Your Home, Wigan & Leigh Hospice
Whilst many of our patients suffer from a form of cancer, the Hospice cares for anyone who has a terminal illness, including those with dementia. In one case, we had a patient with end stage dementia whose main carer was her husband.
The patient first noticed her symptoms approximately nine years ago when she began to ‘miss’ things such as forgetting appointments and started to notice that her problem-solving skills became an issue. Several months later, her husband became aware of a drastic change in her mood. On one occasion a piece of furniture was thrown out of the house by the patient due to her frustration at not being able to place it properly in the lounge.
The patient received a diagnosis of Frontotemporal Dementia after scans showed moderate short-term and long-term memory loss.
Since her diagnosis, her husband has taken the role as her full-time caregiver and has expressed how incredibly hard the situation is. He states, “it is never ending”, with him now shouldering all the responsibilities that were previously shared.
They have found that the support visits by the Hospice in Your Home team allow the couple to have a much better quality of life within their situation. The service provides specialised palliative care to individuals with life-limiting illnesses, focusing on comfort, symptom management and emotional support. Expert care in the home is provided by trained nurses and healthcare professionals, offering a familiar and comfortable environment.
The burden of the role as a carer can be frustrating and exhausting. The patient is slowly losing her capacity to care for herself, and her husband is having to guide her and “pick up the pieces” through the difficult days and moments.
During the Hospice visits, the patient’s husband will often take a break and go swimming which he has found helps to relieve some of the stress that comes with being a full-time carer. He says it “lifts him up”.
The patient’s disease is hard to manage and is often challenging as it does not follow the normal routes seen in other diseases. The team co-ordinates and updates other specialists working with the patient, including doctors and nurses, to provide that extra layer of support. An important part of our care is to identify what is valuable or sacred to the patient, so we can ensure that the support is both reflective and respective.
By fostering a strong relationship with the patient and her husband as a carer, we can make a positive impact that helps their situation as much as possible.
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