Supporting a parent who may be aging or requiring care may become stressful for families who may also be juggling their own work and family commitments. The need for case management from home became pertinent as my partner and I were entering this era of our lives of supporting a parent or four parents and we began to identify first hand the struggles that many families were facing. When supporting a parent there were challenges in pulling together past medical information and we could see many people struggling to meander their our way through the medical model which they may not be fully understanding as they did.
Following two decades of involvement in the primary and secondary rehabilitation settings and being directly involved with families who were supporting a parent going through various life changes, I was aware of the burden that this placed on family members who were providing the support. If this is you, this burden is across multiple resources available to you such as
|
|
|
We experienced this first hand when Kerry and I were away on holidays and believe it or not, all four of our older family members needed some form of medical intervention whilst we were away. Thank goodness for open plan mobile coverage to save on that resource so we could continue the support from a distance! One member was in critical care in another state whilst being on holidays, another was frail and taken to hospital with the result of a nasty fall breaking a bone. Another, had just been discharged from hospital but was in a circumstance where medication became necessary and needed support to find this, whilst the final member needed support in being the care provider when she herself was not well requiring intervention.
We realised how powerless we were to support our parents without immediate accessibility to their medical records.
We wished we had build case management from home sooner and had their details up loaded so that we could act. What this did do for us though, was consolidated for us the importance of perusing this method of managing medical information and families being informed about updated and past medical information so that it can be provided to the medical team immediately … at a time when delays in information may actually have cost lives. Fortunate for us, my mother had done such a great job of coordinating my fathers diabetes and in preparing the team in their region, that she was linked already to the emergency team when the events occurred. Times like this and the trust I have in our medical services available to us. I am grateful to be Australian and have the health system we do.
Why failure to adequately support a parent crept up on two middle aged individuals like us as it did?
What we describe as our failure to support a parent was firstly because we were foolish to think that because all was well for so long that it wouldn’t change very quickly. It was also due to our parents demonstrating that they managed their affairs so well for so long and really didn’t need any help in undertaking their appointments with their doctors or health care team. They did a great job of their own self case management from home in holding all those facts in their memory and in their filing draws. It seemed OK as they shared that in conversations with us over time. Yes…we operated from the …sounds all good and sorted! It was when we were needing to cite phone numbers, specific names, dates of assessments, last test results, medication lists and even find information about legal documents such as wills, life insurance and home mortgage that we realised how under resourced we were from a distance. We also understood that on returning home it still would be challenging to support a parent by having to search around the house trying to find details or chase up information from medical professionals. This frightened us immensely as we knew that if this circumstance had of been life or death…we wouldn’t have been able to act as promptly as we may have needed.
However, support is not just about-
compiling records and collecting specialists
phone numbers.
This is definitely an important part of case management from management, it is also about-
identifying the support that is required
finding the medical or health care available
understanding the system to access that support
managing your own budget to support that
assistance to be provided
This may be for an unknown period of time given that it is challenging to predict the time frames of some illnesses and if degenerative in nature, what support would be needed additionally at these various stages.
Success in health care management is impacted by the capability of a skilled case manager
This individual is responsible to coordinate and communicate a diverse team for an individual who may not be able to undertake this on their own. The central person that links between the individual and the health and care team is the primary family member (eg. the son, daughter or close relative). They are often the one who is their taxi to and from the appointments, their counselor and may even be their “pseudo-financial adviser” keeping an eye on things, which places them in the prime position to be the central and best person for the job.
However, how do we learn to be great at this? Is it a natural skill we just develop over time? For some people…I think they do a great job at this as their lives have trained this capacity in their occupation in some form or another. For others, it is overwhelming and a burden when they feel powerless to understanding the health care setting.
If you want the help to learn this…this program has been developed to support families who are in need and the expense to you is learning and time. The benefits will be:
 |
saving time with unnecessary obstacles along your way |
|
being organised and having ready accessibility to your family members details |
|
being specific and clear with your details to build better clinical relationships with your professionals |
|
being a key member in decisions with your professionals and learning advocacy skills to support them best |
Who could benefit from this support?
There are many medical condition that require a team of medical support for family member to coordinate and case manage. This can be an exhaustive list but to cite some of these conditions and examples of the medical teams involved are as follows. This list is very genralised an dsimplistic as you form your own based on your needs.
| Medical Condition | Team members involved | |
| Mental Illness | Schizophrenia | Psychiatrist, Psychologist, general practitioner, Pharmacist |
| Bipolar Disorder | Psychiatrist, Psychologist, general practitioner, Counsellor, Social Worker, Pharmacist | |
| Major physical injury | Fracture neck of femur | Orthopedic Surgeon, General practitioner, Rehabilitation specialist, Physiotherapist, Occupational Therapist, ACAT Team, Community Care team, Chiropractor, Osteopath |
| Medical illness | Diabetes | Physician, General Practitioner, Pharmacists, Nurse, care team |
| Cognitive impairments | Dementia | Psychiatrist, Neurologist, Occupational Therapist, Speech Pathologist, Diversional Therapist, General practitioner, High care facility, Pharmacist |
| Alzheimer’s Disease | Psychiatrist, Neurologist, Radiologist, Occupational Therapist, Speech Pathologist, Diversional Therapist, General practitioner, High care facility, Pharmacist | |
| Degenerative Diseases | Motor Neuron Disease | Neurologist, Radiologist, General Practitioner, Physiotherapist, Occupational Therapist, Speech Pathologist, Care facility or community team, Dietitian |
| Parkinson’s Disease | Psychiatrist, Neurologist, Radiologist, Occupational Therapist, Speech Pathologist, Diversional Therapist, General practitioner, High care facility or community team, Pharmacist | |
| Communication impairment | Stroke | Neurologist, General Practitioner, Radiologist, Occupational Therapist, Physiotherapist, Speech Pathologist, Psychologist, Counselor, High care facility, Pharmacist |
| Complex Head injury | Neurologist, General Practitioner, Occupational Therapist, Physiotherapist, Speech Pathologist, Psychologist, Counselor, High care facility, Pharmacist | |
| Autism | Paediatrician, Psychiatrist, Psychologist, Speech Pathologist, Occupational Therapist, Education Team, Behavioural Therapist, ABA Therapist, Care Team |
Why do this?
Life is too busy to have extra stress and worries that are unnecessary.
Having things in order provides a great sense of relief so that when action is required, it is simple and stress free.
Failing to plan-may be the worst thing that we ever do in these circumstances.
Being relieved that we did put a small amount of time for the benefits for a family members health and care is the reward.
Please communicate with us regarding any issues and needs that you have experienced in the process of supporting your family member and we will strive to look for solutions or provide additional information where able.