THE BLOG

Who's Taking Care of You?

04/09/2013 13:02 BST | Updated 04/11/2013 10:12 GMT

As a Parkinson's patient, I am addressing the issue of "Who is taking care of the caregiver?" If you are a caregiver, I am speaking directly to you, for looking after yourself is vitally important if you wish to continue taking care of a loved one with Parkinson's or other serious long term illness.

Joining a support group specifically for "caregivers" is an excellent outlet where you will find support and comfort, speaking with others in the same boat as yourself. Talking honestly with someone who is going through the same ordeal can be of tremendous help enabling a caregiver not to feel quite so overwhelmed and alone. Learning all about Parkinson's gives you an advantage, even though you may feel saddened to learn in depth the harsh realities that await anyone suffering a degenerative disease. I believe it's better to be prepared, educated about symptoms and possible medications, staying up to date of new developments and being aware is by far the best way to tackle any medical problem. For goodness sake, don't hide your head in the sand like an ostrich! I can assure you, Parkinson's isn't going to magically disappear, nor is it going to help by not confronting an issue that without doubt will change your life.

A caregiver usually knows intimately the person they are looking after, therefore he/she might notice things no one else pays attention to. Being present at doctors appointments is helpful, for if something is wrong, trusting your instincts, speaking out can be of great help. Like most patients, for me it took trial and error to find the right pills, dosage and intervals with which to take Parkinson's medications. In finding the optimum treatment, along the way there were several times a new tablet clearly did not agree with me. When I was not quiet myself, my husband (who is my caregiver) stepped in, for he could plainly see something was not right. The responsibility placed on the caregiver's shoulders can be heavy.

Everyone has their limits, and knowing where to draw the line is important. Allowing and encouraging someone with Parkinson's to do as much as they can by themselves, not only is best for the patient, but also the caregiver. Caring for a loved one takes great stamina and endurance, as often this role is for an extended period of time.

The caregiver should not neglect their own health at any cost. It's far too easy to be immersed in taking care of someone, forgetting or setting aside your own needs; going to the dentist, doing some exercise for yourself, or making sure you eat a well balanced diet. You need to take care of you, to enable continue caring for your loved one without causing yourself detrimental harm psychologically or physically.

A caregiver needs to acknowledge and accept they may be under constant pressure and considerable stress, for its not just a patient who can be in denial, but also close members of the family. Don't be a martyr and struggle alone, realise it's OK to ask for help; graciously accept assistance when it's genuinely offered.

One of the most important things for a caregiver is to have some time off and away from the situation; doing something fun they enjoy, going out with friends, or taking part in a particular hobby that is outside of the home environment. Having "time out" is vital to safeguard the caregiver's wellbeing and to ensure he/she doesn't emotionally "burn out".

Caring for someone you love and wanting to take care of them with all your heart, to the best of your ability, a myriad of emotions come into play. It is only natural to have feelings of anger, resentment, sorrow and even depression. Parkinson's can push one to the very point of despair; future plans being pushed aside, anguish at seeing a loved one suffer, the financial burden of lost income and ever increasing expenses, sadness of what lies ahead and total frustration at being dealt a bad hand in life. With any serious life changing circumstances, such as loss, divorce or being diagnosed with an incurable disease, it is quite normal to go through various stages of emotions. Everyone's reactions might vary, but it is important to acknowledge them in a sensitive and compassionate way.

A doctor may be so concerned for his patient, he may unwittingly forget to ask how the caregiver is holding up. It takes but a moment of the doctor's time to ask this simple, yet crucial question, for Parkinson's affects far more than just the sufferer. Thus my question remains to the caregiver: "Who is taking care of you?"

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