Caring for the Chronically Ill
Six critical ways to rise to the challenge from someone who’s been there.
Shortly after my husband and I got married, we were thrown a curve ball. My husband was diagnosed with Fibromyalgia, a chronic auto-immune disease which manifested in extreme physical fatigue. It was definitely not what I expected for life as a newly married couple.
Today, seven long years later, he has mostly recovered. I wish someone would have told me right at the start the following pieces of advice that I learned through experience:
1. Take care of yourself
When you are the primary caregiver of a chronically ill family member, you may be forced into the role of constantly giving. This can cause resentment and burnout. In order to give of yourself, you need to make sure your inner resources are replenished. This means finding someone to talk to – a friend, a counsellor or a mentor who can provide a listening ear and safe and non-judgmental space to offload. It means making sure you have outlets, like a creative hobby or gym, and nurturing your inner self. Taking care of yourself is not selfish – this is critical to ensuring you can provide the support your loved one needs.
2. Be patient
You have to be patient – with yourself, with the ill person and with the situation. There may be times when you feel like you are failing and are not being perfect. Be patient and gentle with yourself – it’s okay to mess up as long as you get up again. Likewise, the ill person has his own struggles; you need to be patient with him as he goes along his journey. And mostly, be patient with life. Seven years later, my husband is physically pretty normal. I never imagined we would get to this point. People recover or go into remission and new treatments are constantly being developed. It may seem like things will never change – but if you can hold onto patience rest assured that something will change.
3. Figure out what your circle of control is
Since it's easy for the lines of responsibility to get blurred, learning to operate in your circle of control is crucial. It is not your responsibility to heal your loved one. You are not his doctor and you are not God. Surrender control of trying to cure him. This is a huge one. Your loved one is an adult. You can’t force someone to take their vitamins, medicine or follow their exercise regimen. This is exceptionally frustrating and can develop into a power struggle, but ultimately it is his own journey to health and you have to give him space and trust him to do it in his own time. Your job is to support him with what he needs – physical, emotional and spiritual.
4. Talk to God
While friends and mentors are powerful support structures, turning to God will bring the most comfort and strength. God knows better than anyone else on the planet what you are going through, and He is available 24/7 to hear you and hold you. Praying leads to another result – by acknowledging that G-d is in control, one can develop trust and faith that the situation is what He wills and directed, and is not some bad stroke of luck. Strengthening your relationship with God will enable you to internalize that even though you may not like the situation, it’s part of His grand plan and He believes you have the inner strength to succeed. The paralyzing negative thoughts such as “I can’t do it, it’s too hard, it’s not fair,” can be replaced over time with an inner belief and calmness that this is for your ultimate good. It is not random; God loves you and cares for you.
5. Accept limitations
There is a woman in my community who is just remarkable in her ongoing support and positivity with a severely ill spouse. She is shining, happy and a rock of selflessness and positivity. I would often compare myself to her, and chastise myself for not being as selfless and supportive as her. Yet I had to accept who I was and that I am my own unique being with my own personality and background. Similarly, I had to accept my husband’s limitations that he can’t wake up every day at 6 AM with the kids and that there are functions he can’t attend.
6. Change your paradigm
My teacher Rebbetzin Tziporah Heller explains that there are two basic paradigms in life: you can either see yourself as a giver or taker. If you see yourself someone whom the world owes something to and you are in a relationship for your own personal gratification, it will be very hard to adjust to caring for a chronically ill loved one. However, if you see yourself as a giver and believe that your role in the world is to emulate God as the ultimate giver, then you will find you have unlimited love, care and compassion to bestow. This does not guarantee that it will be easy, but you will also find joy in being able to bring light into the world in this unique way.