Carers play an important role in the care and support of someone with Parkinson’s. They are often partners and family members, but could also be friends or neighbours. Many carers who provide care and support will not view themselves as a “carer”. First and foremost they will view themselves as a wife, a husband, son, daughter or partner. The care they provide is unpaid.
Carer’s Australia has produced an excellent online resource called “Surviving the Maze” with over 60 fact sheets to assist carers to navigate the service system of community support.
Caring for someone with Parkinson’s can be a very long and difficult journey and people may react quite differently to the challenge. It depends on many factors such as:
- Your relationship with the person prior to them developing Parkinson’s;
- Your own lifestyle prior to this diagnosis;
- Your own health and needs; and
- The level of support that you have from other people.
To be a good carer you need:
- an understanding of some of the special difficulties associated with Parkinson’s;
- to learn when to help and when not to;
- to allow time for the person to do things for him or herself, without hurrying;
- to not take over (e.g. do not speak for them);
- knowledge about who to go to for help in such things as aids to daily living (e.g. eating problems);
- to have survival strategies (i.e. adopt a day by day approach); and
- to be honest in your relationship.
Carers can suffer from:
- frustration and even anger
- sleep disorders
- information and support
- a listening ear
- opportunity to express frustrations
- good communication with health professionals
- quality time away and access to respite care
- a good night’s sleep (too many broken nights sleep is one of the biggest problems with which carers of people with PD have to contend)
- to look after themselves and their own health
- a sense of humour
- pampering from time to time
Carer’s Support Groups
Joining a carer’s support group is one way to fulfil some of these needs. A support group consists of people who join together to give and get support and assistance in coping with a common problem. They are not a substitute for medical advice, nor are they fund-raising groups. They are simply voluntary gatherings of people who share common situations and problems and who, by sharing their experiences, support and help each other.
Contact Parkinson’s ACT to explore what support groups might be appropriate for you.
Coping with Parkinson’s
Some of the most difficult things carers of people with Parkinson’s have to cope with:
- The variability of symptoms from hour to hour and day to day make it more difficult to plan ahead;
- The slowness – many carers have to fight the urge to help, and need to encourage them to do as much as they can for themselves, even if it takes longer;
- The ‘one thing at a time’ aspect of PD;
- Gradual changes in mobility;
- Sleep disturbances.
When you are caring for someone, good communication is most important. Communication is more than just speaking; gestures, a look, a shrug, the written word are all ways of conveying meaning to people.
If the person you are caring for has difficulty with speech, these hints will help you to make the most of the communication skills they have. If necessary, sit down beside them, or preferably face them so that you can see their face and they can see yours. Suggest that before they begin to talk, they raise their head and swallow the saliva to clear their mouth.
Be careful to suggest, not command. Remind them to take a breath before each phrase.
Ask the person to repeat, if you do not understand what they are saying. If you have understood part of the message, repeat that part so that they do not need to repeat everything.
- 1. Ask the person to speak more slowly if necessary. Echo their phrases to help them slow down. This also tells how much of the message is understood.
- 2. Remind them that you will give them time to respond.
- 3. Ask them to use shorter phrases or single words if it is difficult to make complete sentences.
- 4. Do not shout. Speak at a normal volume unless they have a known hearing loss.
- 5. Be aware that talking may be frustrating and tiring and that confidence may be low.
- 6. Try a ’20-question’ type approach to gauge the subject of conversation first. If the context is known, this often makes for better ‘guessing’ at unclear words; or ask a question which can be answered ‘yes’ or ‘no’. Do not ask more than one question at a time.
- 7. Show you have understood. Give feedback (e.g. nodding head, saying ‘I see’ or ‘I understand’). Repeating or rephrasing the message shows that you have understood.
- 8. Let people finish. Do not try to anticipate what people are going to say. If repeated attempts at a message fail, offer a possible interpretation (e.g. ‘Do you mean…?’).
Content on this page is provided courtesy of Parkinson’s South Australia.