There will come a time when we know that no further treatment can help to cure our loved ones’ conditions. At this juncture, you will need to begin preparations for end-of-life care options, and for the inevitable time your loved one passes on.
End-of-life care is to help someone who has stopped curative treatment. The goal of care emphasises ensuring that they have as high a quality of life they can receive before passing on. Though it is rather similar to palliative care, which aims to improve the quality of life of those with life-threatening conditions, end-of-life care focuses on people whose conditions are considered incurable.
For chronic medical conditions, it is usually recommended that you prepare for end-of-life options well before end-of-life care begins. This is to ensure that you and your family will have sufficient time to understand the importance of end-of-life caregiving and be able to cope with the loss when the time comes.
Understandably, many people find the idea of discussing end-of-life care and related topics to be an uncomfortable subject. If there is still a chance that your loved one can recover, despite how slim it may be, it would seem wrong to consider end-of-life options anyway. In other cases, medical professionals themselves may be unwilling to discuss care choices available and look to prolonging life and providing reassurances instead of being honest about the outcome.
Even so, discussing this together with your family and the care recipient, and planning ahead for possible outcomes, can grant them a better experience at the end of their life, if it comes. It will also be beneficial to you and your family in how you cope with your loss.
Mental Health and End-of-Life Care
Various studies have shown that the mental health of both caregiver and care recipient can vary significantly due to factors such as the quality of care given and the level of distress they feel. It should be noted that how one copes with loss and grief depends from person to person, and is experienced differently. Some may find relief when their loved one passes on peacefully, and have a relatively easier time coping with grief and moving on with life. Others may find it difficult to accept and may even be prone to a mental breakdown.
The truth is that, regardless of how prepared you are, the thought of losing your loved one can take a toll on your well being, especially your mental health. You will experience distress when your loved one goes through moments of pain or discomfort, or when you find it difficult to come to terms with how much your loved one has changed. Being unable to cope with these hurdles can impact your caregiving, and you may eventually find yourself going through caregiver burnout.
Whatever stage your loved one may be going through, taking care of your mental health (and the other aspects of your well being) is crucial. You should be aware of the signs that may indicate you are going through burnout.
- Impaired decision making
- Difficulty adjusting to changes to your loved one’s condition
- Loss of appetite
- Mood swings
- Undiagnosed/undetected post-traumatic stress disorder (PTSD)
- Complicated grief
Managing End-of-Life Care Needs
Planning for end-of-life care requires communication between yourself, your loved one (as the care recipient), family members and the medical team. As mentioned earlier, end-of-life decisions should be made early while it is still possible to make shared decisions together. This is to help avoid unfavourable scenarios where a critical decision cannot be made under certain circumstances.
The end-of-life care needs of every person depends on a variety of factors, most notably the medical condition they are afflicted with. Persons with dementia may have different needs than those with cancer. It is important to consider the purpose of end-of-life care, then consider the advantages, risks, and side effects of the treatment options available.
The treatment decision should take into account your loved one’s comfort and give them proper, loving care before their eventual passing. All of these steps can help you better manage your mental health by reducing stress and anxiety before the eventual passing of your loved one.
Studies have found that persons with a serious mental illness (SMI) are at a higher risk of morbidity at an earlier age than people with other medical conditions. SMI refers to chronic psychiatric disorders that can affect a person’s behaviour. Persons with SMI present an additional set of difficulties in ensuring they receive the optimal end-of-life care they need.
The medical team generally consists of a group of experts from varying specialisations to meet the needs of the care recipient. In the case of those with SMI, a psychiatrist is a core component of the medical team. It is their responsibility to assess your loved one’s mental health and make recommendations to the medical team on how to treat it. It may require medication, therapy sessions, or a combination of both.
Persons with SMI tend to receive less care from their caregiver(s); or from professional medical providers. This can stem from a variety of factors, which include:
- Patient-related issues: This stems from instances where persons with SMI cannot communicate their symptoms very well or are prone to paranoia or hostility that can make it difficult to deliver the level of care needed. A lack of knowledge of their condition or medical options available can make it very challenging to give them proper end-of-life care.
- Health care issues: A contributing factor can stem from medical providers being reluctant to provide additional information to the person’s medical options. In some instances, the person with SMI may rely heavily on their medical provider for their end-of-life needs. A lack of cross-speciality expertise and improper medical care due to stigma or other reasons can impair the proper end-of-life care that is needed, which can lead to unpleasant circumstances for everyone involved.
- Cultural factors: There remains a strong stigma on mental illnesses in Asian society due to a lack of awareness on the subject. This can lead some people with SMI to hide their condition so they avoid being shunned by society.
Planning ahead is always a good course of action to take, so you can learn everything there is to know about your loved one’s needs as they approach end-of-life, and thus make informed decisions to deliver high-quality end-of-life care.
Having a qualified psychiatrist to help communicate whatever issues may be faced by your loved one can be helpful to bridge the gap between medical and mental health needs. It also prevents unwanted scenarios from happening that are detrimental to your loved one’s end-of-life care.
Dementia is an age-associated memory impairment that affects their ability to think, remember and reason. Part of the challenge of dementia comes from frequent and sometimes unexpected behavioural changes in your loved one. As advanced dementia impairs their ability to think and communicate clearly, it can be difficult to identify their needs or concerns. Sometimes, they may not even be aware of how dementia is changing them.
Not knowing these concerns can affect the level of care given to them; you may be poorly equipped to provide your loved one with the level of care that best reflects your loved one’s wishes. It is therefore important to discuss the subject in the early stages of dementia. The unpredictability of advancing dementia can also hamper these discussions if done late.
As dementia progresses, your loved one’s overall health will also deteriorate, some more rapidly than others. Providing round-the-clock care will be inevitable, as your loved one will have difficulty eating, drinking and moving.
Advance care planning, discussed with your loved ones’ medical team, is always a good start to consider all avenues with respect to your family/loved one’s wishes, while also covering all medical bases for adequate goals of care and the prevention of unwanted complications. Remember that the treatment plan is still open to changes, so do not hesitate to voice your concerns with the medical providers as end-of-life care is provided.
If you are still providing care for your loved ones, be aware of their reactions to external stimuli or if they may be in pain. Knowing the signs can help preempt complications that may arise, while better addressing their current care needs. You should also maintain communication with them as often as possible, reminiscing good times and using physical contact as reassurance. Even if they may not be able to understand you, they may still respond to the tone of your voice or your gestures.
Consider our guide to caregiving for persons with dementia for additional information.
When cancer reaches the terminal stage where the cancer can no longer be controlled, treatment may be stopped and the focus may be directed to end-of-life care. Normally, the doctors will discuss the matter at some point in time during treatment, depending on the cancer stage and how your loved one responds to treatment.
As per the previous conditions, communication is essential to giving your loved ones the care they need. Talking to the medical team on available options, observing your loved one’s condition (changes in their condition) and being there for them are all key components to helping them through end-of-life care.
Depending on the cancer’s severity, your loved one may be able to have a more active role in deciding the best course of action for their end-of-life care. Unlike dementia or SMI, persons with cancer are still able to make rational decisions for themselves; it is, therefore, important that they have their say, and to work with compromises on difficult topics. Honest conversation is still better than limited ones, or none at all. Advance care planning will again play an important role.
The least that can be done is to attend to your loved ones as best as you can and help them with tasks they may have difficulty with, such as moving, using the washroom, or taking their medications. Plan your routines around the changes they go through: if they have trouble sleeping, be by their side and accompany them when your presence can be comforting for them. If they become more sensitive to the room’s temperature and/or humidity, adjust their clothing or covers accordingly.
Coping with Changes Before End-of-Life
Preparing for their eventual departure is not something any person can get through easily. The least you can do is to appreciate every little moment that you spend with them.
Communication still serves an important purpose in building bridges with your loved ones, even if their condition prevents them from understanding what you say. Non-verbal cues such as holding hands, hugs or even gentle touches can still convey your feelings to them; anything that can provide some measure of comfort will be meaningful for your loved one. Discussing the matter with family and friends can also give some level of solace to each other.
Broaching the topic with children might be rather worrying since children are not entirely familiar with the subject of death and dying at such young ages. While it is normal to hide the feelings associated with death and grief from children, it may also be a double-edged sword when they realise something is wrong and do not know how to address it.
Honesty is important where children are concerned. Give them reassurance that they will still be cared for, and that it is not their fault as children sometimes believe they cause ‘bad things’ to happen. If they have other questions or concerns, answer them gently and honestly.
If you feel it may be beneficial, having religious or spiritual guidance and counselling can help with coping through your eventual loss. Your loved one may also be a part of it to give both parties consolation, whether from answers to difficult questions, or simple prayers to help both of you feel at peace with what is going on.
Eventually, there may be signs that might indicate that your loved one is approaching their passing. You might notice them withdrawing from family or friends, losing interest in hobbies or pastimes, increased sleep, and increasing weakness and pain. Be aware of changes at all times, and alert medical staff if you worry something is wrong or is out of your control.
In their final hours, a number of things will happen. Your loved one’s internal organs will slowly begin to shut down. During this time, it is crucial for you to be there with them and keep them comfortable before they depart. Talking to them will be beneficial, as they may still be aware of your presence. Comfort them with reassurances that they are loved and are surrounded by people who cherish them.
If your loved one does not respond, or you sense that they have departed, check for the following:
- No pulse detected
- No breathing
- Relaxed muscles
- Eyes no longer moving
- Partially shut eyelids
- No response to sound or touch
If a few or all these conditions are there, then the inevitable has happened. Take some time with the family before you make the necessary arrangements. You should not bury your emotions and pretend you are fine. Doing so will only make it harder for you to move forward from grief, and it will take a toll on your mental health. By all means, embrace the plethora of emotions you will experience, and get the support you need from your family.
Once you are all ready, having said your final goodbyes, then it is time to make the necessary preparations.
Coping with Grief and Loss
It is not easy to find meaning after a loss, especially if the departed was very close to you. There will also be other pressing issues that can get in the way of your grief, such as handling the funeral expenses, managing their assets, and dealing with the finances. If the thought of these overwhelms you, speak to your family or friends and see if they can provide any assistance, small or large, to help you along the way.
Professional help can also go a long way in ensuring you can healthily move forward from grief. Do not keep your feelings bottled up inside where it can eventually cause more harm. You can also find support groups where you can share stories and experiences with others who have gone through the same thing. Organisations like the Befrienders and the Malaysian Mental Health Association (MMHA) can help you find new meaning in life over time.
Find support from those closest to you to help you navigate the confusion of your loved one’s departure. It can give you a sense of closure and understanding in confiding with family and friends, who may also feel the same as you do. It will also help strengthen familial/friendship bonds that can help see you through the good and bad times in the future.
There is no one right way to grieve. What matters most is having the space and time to grieve while reflecting on the good memories shared with your loved one. Take good care of yourself while you mourn; as the pain of loss slowly subsides, you will keep your loved one in remembrance as you pick up the pieces and move onward with life.
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