I have now stayed in the hospital for over one year 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 waiting into an art. Somehow I am now less fussed about date postponements, cancelled procedures and generally people turning up late for simple conversations. I have learnt that no matter how far into the future a particular time seems, it always comes in the end.
Another thing I can now interestingly do is look forward to meal times with some optimism however unpredictable the actual “plate of food” may turn out to be. I have learnt to eat and even enjoy bad tasteless food. My expectation from food has moved beyond tastefulness and presentation to just good old satisfaction! With this new focus, I have now begun to also make an art of feeding myself. All old fussy eating habits have been laid aside. I can eat fast foods, bad food, good food, smelly food, watery food, hard food (I think you get the point). I eat them without giving away the true blows dealt to my palate as they are being consumed. My taste-buds have unfortunately become as dead as my ears to less desirable foods and sounds.
The other side to becoming “hospitaley” is that I have become a deskilled mum on the home front. It feels like I have somehow forgotten how to do house chores as happily as I used to. My brain cannot seem to settle into my normal life at home. I keep feeling I need to go back to Fred in the hospital when I am at home with Mark. Our lives have been quite split into hospital and domestic. Karl handles the domestic side expertly (and for that I feel blessed and remain thankful) . I handle the hospital side of things. It has been working for us fantastically I must add. We have proved the famous Economist “Adam Smith” right because like he proposed, division of labour has certainly led to specialization even in our home. Karl and I have become not only guru’s in our chosen fields but also feel very satisfied and settled into these roles.
Sadly, the down side to this division of roles is that I have found that I do not cope very well handling the domestic side of things when I go home. It is not easier to be in the hospital either but I guess the brain just prefers doing what it has become used to. Cleaning beds, vomits, chanting nursery rhymes, being the entertainer, teacher and making sure Fred is okay is also challenging. It is stressful but it has become my new normal. I feel a sense of panic when I have to go home. I can still cook (that will take more than a year to get de-skilled) and that. However, I have noticed that I now experience some apprehension whenever it’s my turn to stay at home with Mark. I can’t seem to find where things are kept when I am at home. This makes me feel like a stranger in my own home. I can’t get over how much Mark has grown this past year and it hurts me as a mum that I have missed out a lot on this part of his life. One year is a long time in a child’s developmental clock and it seems like a shame to feel a sense of loss because I have been absent most of the time. I feel too tired to play and either want to constantly sleep or leave. No one notices this but deep down I do and it leaves me feeling sad for my son. He deserves to have me fully too and although he cannot know how I feel, I still carry on.
I don’t believe that I am alone as a mum and carer. These feelings that I experience and keep safely internalised are very common amongst many parent carers. During my numerous interactions with parents around the hospitals I have been privileged to visit, this is a resounding dilemma. So as a parent carer who is already stretched by the demands of a sick child is it possible to stretch further to accommodate the demands of parenting your other children or loved ones? Honestly if you are not able to do more than you are currently doing, no one will blame you. The only thing in my experience that I find is that in the long run, you still feel cut off from the rest of the family. So why the need to find a way to address this issue?
The existence of each child/children on either side of the sphere- home or hospital means that as parents we have to deliberately step out of our comfort zones. So although staying put on either side might work well for our families, we have to find a way to alternate between these roles for the sake of the children. It puts more demands on us as carers but it helps address the needs of the children. Each child in a home deserves the attention of each parent where realistically possible. We miss out on the lives of the other children if we stay put at home or in the hospital.
This need to create time for other children is not only restricted to parent carers in hospital, It also extends to carers whose sick children’s demands at home make it nearly impossible to give any attention to the other children. It can be misunderstood unfortunately by these siblings as uncaring and be the main reason they start displaying less desirable patterns of behaviour. These characters are devised unconsciously by the siblings at home to get your attention whether in a good or bad way.
So as a parent carer who can relate with this dilemma, all hope is not lost. The good news is that you are not alone and whatever stage you are in your journey, there are still things you can do to improve your relationship with your other children and loved ones. There are ways to get things started and feel more in control. Here are a few tips that have worked for us as a family that you may also find useful:
1) Communicate your need for support: 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 feelings of helplessness. For those without partners or who are single parents, it may be a good time to speak with the medical or nursing teams handling the care of your sick child so that they can support you. The social services and various teams in the community also exist for this reason. Your health visitor or GP can signpost you locally to most of these support structures and advice you on what is available in your area.
2) Communicate with your other family members: It is also a good idea to communicate with your children and loved ones. Let them know how you struggle so that even your small efforts to be with them can be appreciated. There is no need pretending that you can play or perform activities with them if you physically cannot. This can enable you create time to rest or get up to speed with the ways things are being done in your absence. Communication will also help them understand how your stress levels may impact on your ability to be the parent they are used to in order to avoid misunderstanding. Some Parent carers feel more tired at home as the brain may associate the home to be a place of rest, solace, comfort and refuge. This state of total need for rest can impact on a parent carer’s own personal health and well being especially while on a home visit. Proper communication also means that family members are not left feeling snubbed. It enables them to also take adequate steps to support you as a parent. Children may begin to play more quietly if they know their parent is not feeling perfectly well. Pretending that all is well can lead to becoming over pressured by the endless demands by family members at home who are otherwise excited to see you.
3) Take a break from care: It may be a good idea to consider allowing a partner, family member or person you trust for example a close friend swap places with you for a few hours or days at a time depending on what is possible. No matter how little the time you get off is, it will still be helpful. You can spend the time doing something else for yourself like socialising, resting or simply doing nothing. It doesn’t matter as long as you can get a break, everyone deserves a break. Some local authorities provide only a few clustered hours of care to families with sick children depending on their needs and what is available. Do not decline help except you are sure that it is not really suitable for your family. 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 help. The problem with declining offers of help is that you get offered less frequently. This may not apply to the help you can access from your local authority but certainly to those offered to you informally by friends and family. They sometimes misinterpret being declined as an indication that you will rather be left alone. As long as you are confident that you will not feel awkward asking for help when you really need it in the future, you may want to resist the urge to decline it.
4) Maximize the quality of the time spent with the rest of the family: As the time at your disposal may vary, be limited or inconsistent, it may not be such a bad idea for you to plan some activities to perform when you are 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 your other children towards you. It will make them 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 and bonding which in turn can be stress relieving for the care giver. Quality time does not have to be expensive or stressful. Simple activities performed together with children and loved ones are good enough. Remember that what your other children actually need is your attention. Watching a box set of a movie your children enjoy can inject laughter into an otherwise stressful home environment.
5) 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 them. Guilt is emotionally exhausting. It also robs you of the enjoyment of the short time you have to spend with the rest of the family. It can make you appear absent minded and unhappy to be with the family. Your other children can pick up this from you and in some cases resent you for it. Especially when they can compare your mood and demeanor and find a sharp contrast between your behaviour with them and with 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. So drop the guilt and enjoy the time you have to spend with the rest of the family.
6) Avoid getting distracted:There is a tendency to try to catch up with every single house work that is not being done in your absence. This is a good thing as long as you don’t overdo it. It is good to make allowances for how your other half or family members run the home in your absence. As long as your home is not an absolute mess when you return, it’s okay to avoid over exhausting yourself making your house look perfect. All the time you will spend tidying up and making a fuss will distract you from actually spending and enjoying your time at home with your other children. Look at it this way, as soon as you step out of the door back to the hospital things will return back to what they were before you came home. Communicating your need for tidiness and organisation with the rest of the family can help reduce the amount of mess you have to deal with when you return home. Avoid other distractions like phone calls, chats and the internet when you are at home. Spending all the time with the rest of the world will rob you of the time you have to spend with you other children.
6) 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 on 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 very exhausted. Resting properly before, during and even after the visit can help you feel more relaxed and more able to cope with this bombardment. Adequate rest means that your temper and moods are more manageable, keeping you relaxed through the whole process.
7) Make it a consistent or regular thing: Finding the time to be with 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 that siblings are otherwise left with. Making the time to visit home and give attention to the other children (for those not hospitalised with their seek children) should also be consistent. This consistency helps to create some stability in the home. Even if this time is only available for a few hours a day or a few days a week, it helps the other children know to expect that quality time with their parent. Consistency is an important tool that creates stability in the life of a child.
So now, having adopted many of the tips above over time, when it is my turn to go home for even a day or so to be with Mark , I now look forward to my time with him. I am his mum after all. Although he doesn’t mind me looking after his baby- Fred, I know just having me around the house as his mum for a few hours a week is much better than being completely absent. I feel happier as a mum too because I know that I am no longer going to miss out. I am not going to fail him again. I too am now more available to watch him do the things he loves at home or school.
I hope that in whatever shape or form your own responsibilities take, you will find the strength and courage to take a break. Your kids need you …. and so do you!
Thank you for reading
If you enjoyed reading this, you may also enjoy some other topics we have discussed in this series.
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