Home Care Tips for Terminally Ill Patients
Taking care of a loved one who is terminally ill can be taxing emotionally and physically. The responsibility of the care taken is much more than meets the eye. Apart from supporting the ailing in whatever their physical disabilities, it is also important to offer a tremendous amount of mental support and to make sure that they are emotionally positive and stable while coping with their existing physical ailments. Choosing home care for terminally ill patients comes usually after all the treatment options outside home have been exhausted. It is often the only humane option, keeping in mind the comfort of the patients during their final days. However, it comes with various challenges. Time and dedication, patience and a strong will to stay upbeat and positive are only some of the requisites a care taker should possess.
Here are some tips for home care of these patients which can make an otherwise difficult road, a little easier to travel.
Be a listener – Most terminally ill patients need someone who would be willing to listen to their worries and fears even if that means they do not have any solutions. Listen without judgement and interruption to what they want to share and avoid pushing them to talk about their illness or diagnosis when they are not ready for it. As time progresses, they may feel comfortable enough to have difficult conversations. This usually happens when they are better able to accept their condition. Wait for such a time.
Reassure – Reassurance and assistance of such patients are key while taking care of their needs. Assistance doesn’t involve only physical help, but also assisting them to explore treatment options, making the right information available to them and helping them feel in control of their life by involving them in making decisions pertaining to their treatment and in other areas. Many patients also develop irrational worries and concerns during this period and it is important as a care-taker to offer reassurance without confronting or arguing with them.
Dealing with denial – As patients move to this phase of their life where their treatment options have narrowed down, denial of their situation becomes a natural tendency. When denial interferes with keeping them comfortable and getting them the necessary treatments, talk to them patiently without being confrontational and offer support by getting them to talk to experts and people who have been in their situation. This may help them to develop acceptance of their health condition over time.
Bed sores and their management – Terminally ill patients who are also physically immobile are at a greater risk of developing bedsores which affect the quality of their lives. Bed sores are pressure ulcers that develop as a result of constant pressure against skin, restricting blood flow to the area. If not addressed at the right time with the right intervention, these sores can have a huge negative impact on the already fragile health of these patients. Preventing bed sores by proper skin care, aerating skin under pressure, frequently shifting positions, using proper pillows and cleaning and drying the prone areas of the skin are all crucial steps in prevention of the sores. Using barrier creams or gels such as the Soreze gel can be very effective in both prevention and treatment. The gel forms a protective barrier film on the skin preventing friction and moisture from affecting the skin. It can also relieve redness and irritation from pressure prone areas thus preventing them from developing into sores. Soreze can be used along with water-beds or air beds to provide maximum protection against bed sores.
Pain management – Pain is a common fear encountered by patients battling terminal chronic and progressive diseases. These patients can feel pain both physically and emotionally and pain management thus becomes key in keeping them comfortable. As a care-giver, looking for signs of distress such as facial grimaces/gestures or vocalization is important to understand the need for evaluation of treatment and medication periodically. Many patients also develop tolerance to pain medication which results in the need for higher dosages as their disease progresses. Periodic evaluation and revision of dosages aiming at keeping the patient comfortable and pain free is the main goal.
Choosing hospice care – Hospice care is provided by a team of doctors, nurses and counsellors who can help the terminally ill with their physical as well as emotional needs. They also can counsel the family or care-givers to deal with the situation to the best of their capabilities. The goal of hospice care is not curing the illness, but to offer the maximum quality of life possible to the patient till the end of their life. Choosing hospice care offers much needed respite to the care-giver at home as caring for the terminally ill can render them emotionally drained and weak.
Making surroundings pleasant – As a care-giver, making the surroundings as pleasant and upbeat as possible can have healing effects on the patients. Playing their favourite music, watching TV with them, reading books together, helping them to connect with friends and having conversations that freshen their spirits are also ways to make them feel positive and loved.
Understand and be there – Terminal illnesses can make even a strong person needy, weak and afraid. Talk to them about their insecurities, reassure them of your presence when they require it and simply give them a chance to talk. Patients also worry that they are being a burden to their care-givers. Assure them that you like being there for them and do not impose your stress or anxiety on them. Seeing a calm, composed and collected care-giver can alleviate most, if not all of their worries and concerns.