Dear Helga after our last talk I have been thinking of ways to help.Though your husband has been diagnosed with a brain tumour, I feel our experiences may be of some help to you.
When my Husband was first diagnosed with multiple sclerosis, I felt so very alone.
In some ways we were already exhausted from moving from Dr to Dr until the diagnosis was finally made.Then we needed to tell friends and family. In fact I initially denied the diagnosis and asked that we tell no-one Coming to terms with it is difficult, your life will now be fully occupied by the dis-ease and healing of it. So I am hoping that you would take some of my experience to help you on your journey. This letter is really all about you and this is something you need to learn. And you absolutely must prioritise things.Or life will become a whirlwind the rush and noise and constancy of medications timed and Drs visited, the missed sleep the change of diet, you must find time for yourself. In fact it may help if you to write a list of your favourite things example. Riding your bike, going to a movie, having coffee and cake with friends, reading a book in a sunlit corner.
These are the first things that’ll disappear in your life. Most carers suffer burnout, because their job is now 24 hours, waking, sleeping tearing at your heart space so taking time for yourself is imperative. So here are a few suggestions I offer with love.
tip# 1 Never feel guilty when you take care of yourself. people will forget that as the care giver you are living the same life as the brain tumour patient. It is you who must find the energy to answer the phone calls from friends, to prepare the meals to do the washing keep house etc so you too are going through a very tough time. Do I do not feel guilty asking for help.
tip#2 When you feel that you will explode go for a walk..
I can remember I had washed and ironed full basket of washing. I was folding the last piece when my husband called from the bed he began to lecture me on something as I have carried the washing basket into the bedroom with me I then took each piece and threw it at him. He sat draped in freshly ironed clothes and I then realised that I would have to do it all over again . Lack of sleep and lack of care for myself had ended up in an explosion of temper.
Leading me to tip# 3 Accept help.
Yes this is a big one, I suspect it’s based on the fact that we feel we must protect our loved one. Sheild them from the world. Maybe we think no one can care for them as well as we do. Please remember that your loved one also needs variety, diversion away from doctors and medical clinics. Wouldn’t it be nice if they had a friend come to read to them, Someone to share cooking a meal. Someone bringing things magazines or books from the library to them. And during this time you could have a moment for a massage A walk the sunlight or simply digging your garden..
tip#4 Keep your friends close. Some will not want to know the news, Because they do not know how to handle the news. But from others you’ll find a rare and wondrous quality of support and love. They will willingly find ways to make your life easier, They will listen to your moments of anger frustration and despair. And it is fine to share with them remember, that they love you, they are your friends.
tip#5 Sleep glorious sleep. Borrow relaxation on meditation takes from your library purchase them.Talk to a local yoga/meditation teacher. Sleep is a healing time for you and your husband. My experience was that I woke often just to check if he was breathing. As I still continued working, I found that my temper was harder to control, I was very teary and had little patience. In fact I had labelled myself the virgin nurse.
I turned back to my meditation I sought help from my yoga teacher. I invited my mother to drive my husband to some appointments. She was delighted to help. And I began sleeping again.
tip#6 Establish a habit early of encouraging your loved one time in the day to lie on the couch or rest in a chair or on the bed. Often they feel as if they too must continue as if life were normal. Rest is vital to healing.
Leading to the next tip
Be prepared to say no. You may have to deny access to friends and family during treatment. Sometimes you are the the shield against the outside world. I found many people phone after they had their evening meal. I would remove the phone from the hook. Because sometimes the only thing that matters is what the patient needs and wants. Perhaps for the first time in their life, they have time to consider what they want.
tip#8 Before your house becomes a prison,
plan things you can do to do as special outings. Something simple you can both enjoy, on a regular basis. Even if it’s having a coffee on the way home from the treatment centre. Initially the patient may rebel, but soon he will appreciate seeing different scenery and meeting different people. Sitting at an outdoor table and observing passing strangers can be a source of silencing the anxious mind.If he is not well enough to meet with friends, for a simple meal. Make sure that you have time for you, even just 30 minutes can renew your spirit and your energy. Try to find time in nature this is healing.
tip#9 If you can afford it buy flowers for your home. Energetically they clear the environment, and brighten your spirit. Your loved one may appreciate the splashes of colour in which sometimes becomes a grey world. Can you organise friends and family to drive the patient to the hospital treatment? As this is a daily occurrence A roster could be drawn up and shared among friends, neighbours and family. Giving you time to catch up on home housework or maybe just a time to sit and meditate.
tip#10. I also suggest that you do not go down the path of questioning why.
Bad things happen to good people. Why has this happened to us? Why has this happened to him? And when friends or family wish to speak of “why is a good man suffering?” This is not fair…… Ask them not to speak like that. Tell them you find it hurtful. You will not accept negative statements in your life now.
In the worst and darkest moment there is always something that is bright and beautiful. If it gives you time to contemplate your life instead of rushing and running and working on autopilot. Is this not a gift in itself? Meditation gives you a big picture it puts perspective back into a life, that has suddenly been upended. When you feel that the carpet has been pulled out from beneath your feet. Meditation can give you a sense of once more being grounded. Finally, right now know that you are needed, you are being valued, and know that you walk the journey with your loved one, remaining separate. It allows you to remain whole and gives them the space to understand that they are loving and loved even in their present state.