Q. My spouse was just diagnosed with a terminal illness. Some people continually ask how I am doing. Shouldn’t they be more concerned about my spouse and not me?
A. This is an interesting topic. With our aging population and our current health care system, the likelihood of having to care for a loved one or a dear friend is becoming increasingly more prevalent. However, it is not just seniors that require extra support but also individuals with mental illnesses and/or chronic illnesses among others.
Regarding your spouse, that is truly unfortunate for him/her to endure a terminal illness. Yes, people are going to be concerned for their well-being but more than likely, they will receive the proper care and treatment to slow down the progression and keep them comfortable. Though terminal is an adjective which means incurable and predictably leads to death, it is a process that may be quick (days/weeks) but it may also take many weeks, months or even years. During such time, the extra needs tend to fall on the family members.
When inflicted with a quick terminal illness whose prognosis is short, most of us would be able to put our lives on hold and do what is necessary to make the most of what is left in that short time left of your loved one. By the way, this is not to imply that you must be able to perform. Not only does the individual have to come to terms with such a dire diagnosis, so too do the surrounding loved ones. We are all unique and therefore have differing behaviours and coping strategies.
The role of the caregiver can be a very rewarding, fulfilling and uplifting experience. The caregivers we are referring to are the ones who volunteer (or are ‘voluntold’) their help. A Canadian survey revealed 8.1 million Canadians who are 15 years of age or older performed caregiving duties to a family member in the preceding year of this survey. Not surprisingly, 75% of these caregivers were women and to add to their role, many women are amongst the sandwich generation (children of their own as well as aging parents). It is predicted that these numbers will rise with the ever-expanding cases of dementia and chronic illnesses.
Perhaps you have lost touch with your family and friends with your extra duties with caring for a loved one. Initially, it may have seemed the right thing to do. Often, we do not wish to bring “others” into our home when things get tough.
Over time, the connections we once had tend to dissolve and it becomes harder to get back in touch. We are social beings and whether you believe it or not, we all need some human companionship.
Perhaps you reduced your hours of work or gave it up completely to be at home more and now have the added financial stress. These various stresses can lead to fatigue, hopelessness and eventually burnout.
It is important to be aware of the symptoms of burnout so that you (or the other loved ones in your life) can spot the signs and be proactive. You might notice that the symptoms of burnout resemble that of stress and depression. These include:
· Withdrawal from family and friends
· Reduced interest in activities that once were enjoyed
· Feelings of hopelessness, helplessness, irritability, sadness
· Changes in appetite and/or weight
· Changes in sleep patterns
· Getting sick frequently
· Feelings of wanting to harm the person you are caring for
· Feelings of wanting to harm yourself
· Emotional and physical exhaustion
How do you prevent caregiver burnout? It is important for you to find someone that you can trust to confide in. It may be hard to discuss negative feelings with another close family member. If that is the case, look for a friend, a co-worker or a neighbour to fill that role. It is crucial to be open to accepting help when it is offered. Also, don’t be afraid to ask for help. You may find there are many people around you that want to help but do not know what you need. You may have previously abandoned your friendships along the way. Those friends will more than likely be there for you and are just respecting your wishes to be left alone. You will need to be the initiator in those instances to gain back their support.
Remember to stay healthy yourself by eating right and allowing yourself time for exercise and plenty of sleep. This will in turn allow you to cope with the less than fortunate circumstances you may encounter. On this note, be realistic with the disease you are dealing with. Considering you are dealing with a terminal illness, there may come a time you may require professional nursing services or continued assisted living outside the home.
Respite care provides the caregiver a temporary break. Look into organizations that may be able to offer assistance with caregiving duties from time to time. Whether it be for an hour, a day, a week or even a month it is important to give yourself the much-needed break from the caregiving role. Respite care can be provided in your own home or in a nursing home or other assisted living facility. Guilt is one of the reasons caregivers avoid seeking respite services. Guilt coupled with the knowledge that the respite care will not be as good as you can provide will likely keep you from using these services. Trust us, we have been down this road with our own family situation. In time, you will learn to forgive yourself and understand how important the respite is. Your body and mind will thank you for it and guaranteed you will be a much better person and caregiver afterwards. For more information on this or any other health topic, contact the pharmacists at Gordon Pharmasave, Your Health and Wellness Destination.