A stroke, a debilitating neurological disorder, Alzheimer's, a terminal illness - What happens when the initial shock passes and the reality of what lies ahead becomes evident? How sad it is when, having envisioned growing old together with your partner, your dreams get shattered and illness rather than wellness begins to define your future plans. If we are lucky we can imagine our retirement or just growing older and slowing down, strolling the beach hand in hand or spending quality time pursuing the interests that up until now have been put on hold or enjoyed only sporadically. And that can indeed happen unless you or your partner unexpectedly becomes ill. Whether sudden or more gradual in onset, you discover that your world has changed overnight when illness forces you to redefine your reality.
If any of this sounds remarkably like the pain you may have felt when you experienced the death of someone close, it is, because there are jarring similarities. You grieve for what you have lost in the past and present, and for the losses you anticipate as you begin to realize that future plans you dreamt of sharing may have to be completed alone or may never reach fruition. Unlike a death, which has finality, chronic illness may feel like it just goes on and on and on, with your partner deteriorating gradually in front of your eyes. Days turn into weeks and months and even years, and the person you once knew and admired for their independence, wit and intellect may now be dependent on you and sadly not even know who you are.
People often come to my office to discuss, among other things, their partner's declining abilities. As I've heard it said, the difference between wellness and illness, is that the former begins with "we" while the latter, starts with an "I": confronting illness, one may begin to feel very alone. For some, there are relatively easy fixes, but for others there are no simple answers. They come for support because, often heartbroken, they are afraid of burdening their friends and family with a story that doesn't have a happy ending. They come because they are depressed and need to learn or be told that looking after their own needs and those of their other family members is absolutely okay and acceptable and that feeling hurt, sad, angry, abandoned, let down, lost or left behind, is one hundred percent normal. I can not take away their pain, though I so wish that I could. I can only walk along with them and help them learn to be their own best friend. I can also help them know that they will feel happy again, though it will be a different happiness.
Here are some suggestions for getting through the tough times:
Enjoy today for what it offers and be grateful for the small things. There are many – you may need to dig a bit deeper to find them, just as your partner may have difficulty in showing appreciation when he too is dealing with pain and losses on so many levels. Accept that it is okay to cry and that you will have some good days and some bad days. Life is unpredictable and the more you live in the moment, and not think about your partner's future status, the easier it will be. This does not mean sticking your head in the sand, but rather, planning for what you can – and then dealing with each day – one step at a time. Get help. While your children can pitch in in a limited way, you may ultimately need an outside caregiver to assist your partner with personal hygiene and care. Aside from the physical work of looking after your partner, you may find yourself dealing with someone who may be stronger than you, aggressive, irritable, and even at times emotionally abusive. Before your partner's illness, there may have been many things he or she did around the house that someone else now has to manage. You may never have paid a bill, or don't know about insurance or other financial issues, but now need to become educated so you can plan for current and future needs. This too, while perhaps appearing overwhelming and challenging, will ultimately feel empowering, once you begin to understand it. There are those who can help you every step of the way. Take a break, get out and get away. In order for you to be a caregiver, you must look after your own needs. There will be times when you'll feel like you have had enough, need some space to call your own, feel hurt or just need to get away from your partner. Whether needing to take the time, or feeling guilty leaving him, you deserve a guilt free "time out". When was the last time, for instance, that you dined with someone and were able to chat or laugh? These are not easy times and going out alone or with a friend, when what you really want is your old partner back, is difficult. While you may be inpatient and not feel like you're very good company, those close to you will understand. Look after yourself. While the last thing you may feel like is a walk or a swim, exercise will help your mood, and your sleep. Trying to eat healthy meals and maintaining a routine will also help with depression and enable you to feel in control of something. Share your feelings. Sometimes you may feel you are burdening your children or friends. While often not the case, check out support groups – whether on line or in person – but only if you find it helpful. Hearing someone else's stories can be encouraging but also depressing. Only you can filter what is helpful or not. If you are not eating well, having difficulty sleeping or having trouble coping, seek psychological support. Life can be tough enough. You don't have to go through this alone.