Coping with Parkinson’s and Caregiver’s Guide

Denial is often a major barrier when the person is first diagnosed with Parkinson’s disease, they will often refuse to admit they have the disease and refuse to even tell friends and family particularly if the disease is diagnosed in a younger person. The thought of going from a well individual to someone with a progressive chronic illness such as Parkinson’s is often unthinkable and unbearable for them.

Why does Parkinson’s disease happen?

During this early stage it is the psychological issues associated with the disease rather than the motor skills problems which will develop later, which have to be addressed first. Probably the biggest issue which the person will have to come to terms with is the reality that they won’t get better but only worse as the disease progresses. They will have to come to terms with and adjust to the fact that the treatment they receive will not make them better but rather help them to maintain functionality in life.

Fears for the future

The person suffering may refuse point blank to tell friends and even family members of the diagnosis in order to avoid being treated and labelled as an invalid. Many fear that they will be treated differently in society and by those they love; this fear will depend on factors such as the age of the person, the point in their life when the disease was diagnosed and fears of what the future will hold for them.

Many people who are diagnosed with this disease will ask themselves questions such as

  • Will the disease interfere with my career.
  • Will it interfere with my role as father or husband.
  • Will it interfere with other relationships such as friends.
  • How will it affect my independence.
  • How quickly will the disease progress.
  • Will I eventually become a total invalid.
  • How will I manage this disease.

Any chronic illness which is progressive by nature will bring about certain fears and worries, this is only natural until the person realises and accepts the form of the disease and how treatment can help to control its advancements. Once they have done this they can regain some control over their life and adapt to the inevitable changes while recognising that at times they may need help from friends and family and they can adapt and live a full life.

As the disease progresses it is inevitable that the person will be faced with new fears and concerns and have difficulty in adjusting to the psychological changes that will occur. It is during this stage that people close to the person fully realise the disease and the problems associated with it.

Difficulties could include

  • Increasing and persistent high levels of anxiety.
  • Withdrawal from social activities.
  • Intrusive thoughts.
  • Anger.
  • Depression.
  • Hypersensitivity.
  • Body self absorption.

When problems such as these start occurring seek advice from a therapist or doctor. This can give the person and their loved ones insight and a better understanding of what is happening. Seeking help and advice isn’t a sign of weakness or failure by any means.

When a person is first diagnosed with Parkinson’s disease it can seem for them like the world is coming to an end, this isn’t the case however for once diagnosis is made although there isn’t a cure steps can be taken to treat it. Research into Parkinson’s disease is coming along in leaps and bounds and new drug treatments are being continually developed.

In the meantime there are several ways that the symptoms of those suffering from Parkinson’s disease can be helped. Here is some practical advice for those suffering from the disease and for their family and friends.

A person’s circumstances will differ

Everyone’s experience with Parkinson’s disease will vary greatly depending on their circumstances; the majority of sufferers will be over the age of 60, an age when various other health conditions can also have an affect on the disease.

Also the health of other people living in the same house will play a crucial role for instance if the person diagnosed as having Parkinson’s is already looking after a family member with an illness.

Younger people also get Parkinson’s disease and for these people different worries will surface, loss of earnings due to the progression of the disease, forced early retirement and coping with young children can all be issues.

The loved ones of sufferers

Family and friends of those diagnosed with the disease can be greatly affected, they will have thoughts and worries of how they will cope with their loved ones illness, particularly with its progressive nature.

If the person diagnosed is a younger person with young children then concerns of whether they should tell their children of the disease will be present. Family and friends may also not want to be the first to broach issues about the disease for fear of making their loved ones worse.

These are all concerns which can become overwhelming when not discussed openly, many people who have been diagnosed with this illness have found their worries are unfounded if they are broached and talked about with the sufferer instead of hiding them.

The outlook

What the future will bring of course will be foremost on the minds of those having being diagnosed with Parkinson’s disease, not only will the person worry what the future holds for them with the disease but also how their loved ones will cope.

Having a better understanding of the disease and the treatments for the disease will go a long way to easing worries and therapy not only for the sufferer but also their loved ones is advisable, therapy of this nature is usually by way of a family therapist, where the family as a whole can openly discuss with a therapist any worries and fears they may have.

There are many support and advice centres that can point you in the right direction and help you to gain an understanding of Parkinson’s disease and the outlook for those suffering.

Coping as a Parkinson’s Caregiver

As the caregiver to a Parkinson’s patient, you will undoubtedly experience various emotional and physical challenges. It can be exhausting, frustrating and depressing to assist a loved one with Parkinson’s disease and see their condition deteriorate in advanced stages. Taking care of yourself mentally, emotioanlly and physically is just as important as taking care of your loved one with the disease.

Tension and fatigue

More often than not those caring for someone with Parkinson’s will be putting their needs before those of their own, stress and lack of sleep will bring about tension and tiredness in the care giver.

Irritability

Caring for someone in the later stages of Parkinson’s disease will be a 24/7 duty, tension from this will quickly mount if no respite is given. The lack of sleep and worries not only about your loved one but also about coping with life in general can bring irritability to even the calmest person.

Resentment

Resentment is a normal feeling which the care giver will have and they shouldn’t feel ashamed to feel this way, there will also be many other feelings such as guilt, sadness or disappointment again these are all natural feelings given the circumstances.

Anger

Tension will normally bring about feelings of anger we have all felt it at some time in our lives, we will often lash out with hurtful words aimed at those we love only to be horrified and distressed by what we did.

Be able to recognise your limitations

With all the best will in the world we cannot do everything we want to or what we think we should. The care giver will have tremendous responsibilities but they should also know that they can and should ask for help when the stress and strain becomes too much for them to bear.

Talk with someone

Don’t let the pressure get too much before reaching out to someone; this could be a dear friend offering a shoulder to cry on, a counsellor, therapist, doctor or social worker. While your loved one needs help there are times when the care giver does too and everyone understands this but the caregiver themselves.

Learn to spot the signs of stress and deal with them

Common signs of stress are:

  • Feelings of tightness in the chest or the inability to take a deep breath.
  • Frequent headaches.
  • Stomach aches.
  • Weight problems either loss or gain.
  • Feeling very tearful.
  • Withdrawal from social life.
  • No interest in sex.
  • Turning to alcohol or tranquilizers.
  • Grinding of the teeth or pain around the jaws.

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