A section for the caregivers

I placed this section for families, friends, caregivers of those who are mentally ill at the top as I feel that if you are reading this page, chances are, you are caring for or learning how to care for someone who is mentally ill. I realised upon reading David A Karp's book that in the creation of this page and the site (even though the site is only a month old thus far), the focus has been so much on those who are mentally ill or grieving, that I have forgotten that the caregivers themselves are under tremendous stress and they too needs to feel heard/listened to and understood.

In this few parts about caregivers, one might read and wonder, am I trying to paint those who are mentally ill as such horrific individuals? It is not my intention to do so. It is my intention to give a voice to the caregivers who truly has to go through the struggles and pain of each day looking after them. The pain is more than just physical, it is a lot more mental and emotional that really wears them out. It isn't easy for them and I hope for them to feel understood.

I thus dedicate this portion of this section to all loving friends, family members and caregivers of those who are mentally ill and may this part of this page help voice out the difficulties and struggles that you might be going through and how you can help yourself better as you accompany them on their route to recovery. I dedicate this section to all of you who never gave up on them. Your strength, patience and courage is a blessing to them.

The many difficulties a caregiver faces

What are some of the distressing issues a caregiver has to face from the mentally ill individual that they have to care about? Some of them would include suicide threats, bizzare behavior, paranoia, self-injury, anger, delusions, hallucinations, paranoia, not willing to take their medication, anhedonia, denial, relapses and the list goes on.

What are some of the things the caregiver might end up going through? Exhaustion, physically, mentally and emotionally. Seemingly no longer have the time and energy to have a social life. Financial problems, guilt, depression. Suffice to say it is an understatement that it is draining for the caregiver.

It's never easy to face and know that someone you love and care about is mentally ill. Some of us may struggle and are reluctant to accept it. It is as if we were given a blow in the gut. We may wish that it's just a temporary rough patch of life they are going through and if we just give them what they need, let them live life they want to, things will be okay, things will get better.

For parents, it is so heartbreaking to accept the fact that your child has a mental illness. You may not know what to do, how to handle it and what you can do to help your child. You may wonder if you are a bad parent, whether you did something to cause it. It's a difficult time for the family.

For caregivers, family caregivers (parents, spouses or siblings) especially, it can be very distressing, for the whole family has to cope with this drastic change. What makes it more heartaching for the family is how sometimes this drastic change is how it affects the very individual you love so much.

You face issues like when would be the time that he/she may have to be admitted into hospital, how to send the person there, and the anger that would come out of it.

You may possibly blame yourself, thinking that you are the cause of your love one suffering from mental illness, causing you to bear with guilt and more anguish. You may feel unfairness, why does this have to happen to you and your love one

At times, you may feel like you just wish he or she isn't around. Much as you love that individual, you feel so much more relaxed, not so uptight and so much less to worry about, as if a heavy weight has been lifted off your shoulders and mind when you don't have to face them. One might feel that we actually dread seeing them. And that kind of feeling may bring about a sense of guilt for feeling that way about someone you care about and love so much, even more so in the past.

What happened to the person that I know and love so much? We grieve for the loss of a person we once know, seeing how they seemingly turn into someone else at times. We struggle to accept them, and at times, for those caregivers, it may seem like a tiring uphill battle, a battle daily. When hopes rises when they get better, only for them to relapse again later on, it becomes more than just an emotional roller coaster ride. We may wonder whether is it time to save ourselves and leave them, whether to give up on them. Where do we draw the line? Are we losing ourselves in our efforts to care for that person? These questions among many others weighs heavily on caregivers' minds.

And then there's some who feel shame and embarrassment about their love one who has to go through mental illness, they may feel that it's something that needs to be hidden and thus they can't accept it. They consider this issue dirty linen that mustn't be washed in the public.

With mental illness not easily visible and detectable, it is very easy for anyone to think that a person is just fabricating it and that they are actually fine and just not behaving.

Caregivers thus face many challenges in helping their love ones. Denial and acceptance, the stress and struggles, the love and sometimes hate relationship they have with them. They must learn how to manage the various issues surrounding their love one who has to go through such an illness.

What caregivers can do for themselves

Dedicate some time each day for yourself. Much as one might feel we can't find the time with all that seemingly keeps going on, it is important that you find a way to detach yourself for a short while each day to care for yourself.

You might ask, "I don't know how to or can't detach myself. I just can't." That is normal. There may be plenty of reasons why you feel you can't. Some might feel they need to be there, they just have to be around. Some feel a sense of obligation to do so, to look after the person, the family. Some feels guilt for that sense of selfishness to detach oneself even for a brief moment to care for themselves

It is important that you be able to find someone to talk to, to express how you feel, the difficulties you are going through. Find someone who would not be judgemental, who would not make you feel worse than what you are already feeling.

There are caregivers support groups that you can join too. Being able to share and hear the experiences of others will help you realise that you are not alone in feeling what you feel and what you have to go through

Understanding that you are not responsible for the illness, and accepting that it's going to take time, possibly a long time for the person to recover and there isn't any quick solution to it is an important step to resolving the role you play as a caregiver.

It is very important to realise that even though your life may seem so tied to and revolving around the person, he/she must not become your life. You, as a caregiver, must continue to still lead your own life, for your own sake, and for their sake. Because if you lose your own identity in the midst of it all, you will become a less effective helper and caregiver to them. The below entry is a part of a passage quoted entirely from Pg 100 and 101 of "The Burden of Sympathy : How Families Cope with Mental Illness" by David A. Karp

"Efforts to fix another person's illness are typically abandoned when caregivers finally understand that, however much they care, they cannot control their family member's illness and that by caring too much they are losing themselves. First, this is how they spoke of lack of control.

I've got to read you something. I've got to read you this. [She reads from a paper she has written]:"There is a special place in my country called the garden of acceptance. It's very difficult to find and no one is able to give directions on how to get there. In fact, each villager reaches the garden by a different route. The only common feature in the journey is the letting go of control. As long as one seeks to hold on to control of their illness or disease they cannot enter into the garden of acceptance. Only when you lay this particular burden down do you find the elusive peace which this burden provides." And right now I've cried a lot because I'm giving up the last piece of control. - Physical Therapist, age forty-nine, mother

This page was last updated : 27th July 2007