I have now stayed over one year in the hospital with Fred and a whole lot has happened since then. There have been tears, laughter, sadness but most importantly, hope. Just “good old hope” about positive outcomes or at least finding the positive sides to our outcomes whatever they may be.
One very interesting should I say side effect of the whole hospital experience has been that I have become more “hospitaley” than I would like to admit. I can now exist in chaos; beeping machines and screaming toddlers make up the sound track of my life. I have turned into an art waiting an art. Somehow I have become less fussed about dates and postponements, they always come in the end no matter how far they are thrown. One less part is that I can now eat bad tasteless food. I can eat fast foods, bad food, good food and you would never tell from my face. My taste buds are as bad as my ears to less than desirable foods and sounds.
I have also conveniently forgotten how to do house chores, live at home and be normal. Our life has been quite split into hospital and domestic. Karl handles the domestic side expertly ( and for that I feel blessed and remain thankful) while I handle the hospital side. It has been working for us. Fantastically, I must add because as “Adam Smith” said – division of labour leads to specialisation. Karl and I have become gurus in our chosen fields.
Sadly the downside is that I have now honestly forgotten how to handle the domestic side. One of the mums on the ward calls it “being institutionalised”. I can still cook (that will take more than a year to get de-skilled) and that but when I say I have forgotten the domestic side, I mean, I now experience a feeling of apprehension when it is my turn to stay at home with Mark. I find I secretly can’t wait to leave. No one notices this but deep down, i know my brain will rather do what it has now become used to – cleaning beds, clearing up vomits , chanting nursery rhymes, making sure Fred is fine. It is stressful but it has become my new normal. I can’t seem to find where things are kept when I am at home. I can’t get over how much Mark has grown. He sees through our white lies (which by the way are meant to be my parent secret tools).
One year is a long time in a child’s developmental clock and it seems like a shame to feel a sense of loss. There is always time to do something. Many parents with sick children especially those who have long admissions can relate with this. There are some ways to try to overcome this hurdle:
- Communicate: If you feel left out of the lives and routines of the family, it may be time to have this discussion with your partner or one who shares the care of your family with you. Keeping your frustrations bottled up may not allow you find solutions. It may fuel your helplessness. For those without partners or who are single parents, it may be a good time to speak with HCPs or social services. They are there to provide support and signpost you to other services that can assist you.
- Swapping: It may be a good idea to consider swapping. By swapping I mean allowing a partner, family member or person of trust swap places with you for a few hours or days at a time depending on what is available. No matter how little the time off is, it will still be helpful. Some local authorities provide only a few clustered hours of care depending on the family needs and what is available. Do not decline help except you are sure that it is not really suitable. My rule of thumb is to accept anything I get to enable me consider my options before declining I find it is easier than declining and later realising it may be a good idea to avoid disappointment.
- Maximise the quality of time spent with the rest of the family as the time at your isposl may vary and be limited, it is not such a bad idea for you to plan the activities you intend spending with your other children or family members. Remember that if you only plan to do anything, you may end up doing nothing. Also, having a plan will endear positive sentimentality towards you. It will make other family members or children feel important and cared for. The siblings of sick children normally feel neglected. Little steps towards improving the quality of the time you share with them can help foster family unity which in turn can be stress relieving for the caregiver.
- Don’t feel guilty: As long as you have made adequate arrangements for the care of your sick child, there is no need to feel guilty about the time you take from caring for your them. Guilt is emotionally exhausting. It also robs you off the enjoyment of the short time you have to spend with the rest of your family. It can make you appear absent minded and unhappy to be with the family. The other siblings can pick up this from you and in some cases resent you for it especially when they can compare your mood and demeanour and find a sharp contrast between your behaviour with them and the sick child. You deserve a break. Spending time with the rest of the family is good and healthy for you. It can make you happy. Happiness impacts positively on your overall well-being as a person. When your well-being is improved, you can feel refreshed and rejuvenated, becoming the best carer you can be.
- Make time to rest: resting can help lighten your mood and leave you feeling less stressed. Time spent with the rest of the family can also be quite full on. As you have been missed, demands placed o you by your other children can feel overwhelming. In their bid to enjoy every moment with you, they may be playing catch up with you. This can leave you feeling very exhausted. Resting properly before, during and even after the visit can help you feel more relaxed and more able to cope with these bombardments.
- Make it a regular/consistent thing: Finding the time to be with your other family members should be a priority for every carer. Apart from providing, a well-deserved break, it also gives carers time to rest and even catch up on other interactions. It helps carers feel less apprehensive about going home and participating in other normal day to day family activities. It helps the other children feel less distant from the carer and reduces the feeling of abandonment they are otherwise left with.
So no matter how daunting it tends to feel when it is my turn to go home for even a day or two to be with Mark, I remember these points and look forward to my time with him. I am his mum after all. Although it doesn’t mind me looking after his bubba, I know just having me around being a mum for a few minutes is way better than being completely absent. I hope that in whatever shape or form your care responsibly takes, you will find strength and courage to take a break. Your kids need you…. And so do you.