ADAPTING TO CAREGIVER CONFUSION – The Complete Caregiver

As a Caregiver, if you feel anything like me you will be increasingly concerned and confused by the changes we see all around us. It is hard enough keeping up with the effects of bank closures in many towns, difficulty finding services that were not so long ago easily available, and higher costs for almost everything if you can get what you need in the first place. When you add the tangle of red tape you must negotiate to fulfill the needs of someone needing ongoing care, stress levels lift exponentially. Being the Caregiver of a disabled son I used to worry about the constantly changing rules and regulations affecting Robs’ personal carers, now I worry about finding a carer at all. I know well how all this uncertainty could affect my own mental health if I let my guard down.

I talk about how to get all your paperwork and records up to date for when your next funding approval meeting comes around. It is one of those tasks we put on the backburner until time runs out and we find ourselves in a rush to get it done. Well over the years I have learned a simple way to keep all that information up to date and was feeling quite confident I was ready for Robs’ approaching funding meeting. So it was a surprise to receive a letter stating that Rob’s funding would be extended for the time being and we weren’t required to do a formal assessment.

To most of us that would be a relief, but this is an example of why you need to look a little deeper and not get caught thinking you’ve gotten paperwork ready unnecessarily. This is where a little confusion could cloud your thinking and catch you out. What if 6 months goes by and another letter comes saying I do now have to meet to assess funding levels, and what if the date for that meeting is already set? Your loved ones physical or psychological assessments may be out of date. You may not have up to date quotes for equipment and your thoughts could suddenly turn to all the what ifs that keep you awake when such meetings are pending. What if the government is relying on you not having all your paperwork ready so they can infer you must not really need the same level of funding? Is it easier to sit back and hope you have a handle on the situation or is it easier to still prepare and be ready for any eventuation?

So it was from a background of struggling to make some sense out of the conflicting information I hear on the news, see in the community, and experience first hand, that I decided to keep an open mind and not be swayed to relax the strategies which have held me in good stead for many years.

THIS IS HOW I NEGOTIATE THESE CHANGING TIMES

1. Make sure you keep all your paperwork up to date. Don’t be swayed by being told it isn’t necessary. In these changing times you really won’t be able to guage what is or isn’t going to be asked for should you be called at short notice to discuss your loved ones’ funding option

2. You may start to notice changes in the attitudes of professionals you deal with as they in turn change the way they adapt to new requirements imposed upon them. Perhaps your in person consultations have changed to phone consultations making it more difficult for you to convey your concerns. Perhaps the hours you can book an appointment have changed to inconvenient time frames. It could be your usual therapist has left the practice.In our case Rob’ physio was away regularly with an illness. We had to find a more reliable physiotherapist even though we were happy with him. It is always a good time to assess whether you are receiving optimal support from the people in what I call, your Core Support Group.

3. Find out what supports are available in your local community, even the supports you may not think you’ll need. I have joined several Community groups in my area. You can meet in person or chat on line. When you need to find a service, a new therapist, or some second hand equipment these groups can be invaluable. I found a wonderful carer for Rob by asking group members if they knew of someone wanting work. Get yourself up to date with what services are offered by different agencies in your community, even if you don’t require any particular service at the present time. Write down a few phone numbers and take some notes for future reference. It will save a lot of stress when you do need help.

4. Have alternate plans of action. My son needs an electric wheelchair to get around. The one he has is only a few years old but experience tells me it could need maintenance at any time. We’ve been caught out on many occasions. The battery charger has failed, a tyre has blown or the electrics have malfunctioned. I am well aware that finding replacement parts is not always easy. Booking a service is becoming difficult too as staff are not always available. I found a cheap backup manual chair for emergencies. We haven’t used it yet but I know I have moving him around covered if necessary. Go through the things you can’t do without and make sure you have a way to manage should something go wrong with electrical equipment.

5. If you hear information in the media which causes concern always check it against your own research and the information you get directly from service providers. Often a flashy news headline can throw you off centre. In fact that is exactly what some headlines are created to do. People have been programmed to get their news from the headlines rather than the longer article attached. Get your facts directly from the source.

Caring for another means adapting to changing circumstances time and again. I believe Caregivers have a solid grasp on this truth as a matter of course. So adapting to the changing environment we are presently seeing all around us is just an extension of what we already do. Putting a few simple strategies in place will help to make it easier.