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CarePoint Blog

Care Journeys is a place where people can share their experiences, wisdom, and point of view as a care consumer.  

We all look forward to life event that bring us joy like the birth of child a child, getting married, retirement, etc. We even plan for the no so good events that bring us sadness, like death of loved one or an accident of some sort. Very few discuss who or how would they be cared for in the event that they can not care for themselves. With advances in medical technology and science, the chances of surviving a traumatic event is highly possible. So just as we plan for possible death, it is wise to plan and discuss what you wish if you were disabled in some way. I love talking about this not because of my healthcare background but because I was blessed by the inadvertent planning on my mother’s part. To this day I have no idea why she purchased a long term disability policy but I am soooo glad she did. That policy helped us financially for many years. But planning for caring doesn’t just involve financial preparation, it involves conversations on quality of life, realistic expectations, capabilities, and more. If you think you should have this type of conversation with someone you care about here are some questions to get the conversation started:

If you were in an accident, what are some of the things that would be acceptable to consent to and why?

You may have to give examples like loss of a limb(s), unable to speak, or paralysis. It is important to ask, why to get an idea on their reasoning behind their answer. One may say that losing one limb is acceptable but paralysis on all limbs is not. They may see a better quality of life with one limb is better than not being about to walk. This will give more of an understanding on their thought process.

What do you think is acceptable quality of life?

If they are not sure what you mean, discuss examples of being able to do nothing for yourself to needing assistance with a few things. Ask them to describe what they feel is important to them in your life. This can range for many people.

How do you feel about caring for others long term, like a grandparent or sibling if they needed it?

This is another question that can range depending on experiences and culture. This question speaks to the perceived capabilities. The time to find that is out is not when the situation occurs but before so that you are aware of each others perceived capabilities. It is possible that feelings can change over time but at least you have a foundation.

If I had to stay home because of an illness, what would you expect my involvement be and why?

This question can really bring up the expectations that may or may not be shared by the other party. This happens all the time - one person is expected to step up and they don’t so now the support person or caregiver is some who had no choice. In the AARP/NAC 2015 report, almost 50% of the people surveyed stated they did not have a choice. It is also important to ask “why” because the person will be able to understand the meaning behind the answers.

These types of questions can be difficult. However, if you are ever in a situation where you can not speak for yourself, it would be great to have someone who understood not just who you are but what choices you would make. Just keep in mind that with life events and changes, it is important to revisit the questions from time to time. The commission on law and aging suggests that you revisit the discussion during one of the 5 D moments - I added a 6th one that is important.

1. Decade – when you start each new decade of your life.

2. Death – whenever you experience the death of a loved one.

3. Divorce or Marriage – when you experience a divorce or other major family change.

4. Diagnosis – when you are diagnosed with a serious health condition.

5. Decline – when you experience a significant decline or deterioration of an existing health condition, especially when it diminishes your ability to live independently.

6. Delivery of child - perceptions can change when you have a child.

Article written by Belena Butler, MSN Lead Care Specialist at Caring Support & Solutions. Caring Support & Solutions is a Care Managing and Patient Advocacy Company helping others get the care that they need.

Updated: May 10, 2018

Some feel that caring for others comes naturally and is believed to instinctual. However, if the time comes that you are faced with the need to provide care for another person or manage a caring situation for yourself, it will take more than natural instincts. A recent report showed there are over 43 million adults in a caring role (AARP/NAC, 2015). Caring doesn’t just involve helping with bathing, dressing, meals, medicine, etc. It involves other activities. Here are some other types of activities that adults have to do for an aging parent, disabled child, or injured loved one.

· Coordinating with health professionals

· Advocating with providers, services, and agencies

· Monitoring of health condition

In the same report it stated that on average 20 hours or more were used each week towards caregiving. If you work, you can easily see how caring for yourself and others may pose an issue. If you are a parents you understand the shift your like took when you started to take care of new baby. Caring for an adult is different. Newborns and develop then start to do things for themselves. If you are caring for an adult with a chronic condition, chances are the development of the condition will get worse and doesn’t go away over time, In fact, it may become more demanding. Caregivers are constantly managing shifts in care from the result of the condition getting worse or the caregiver may actually have change or a life event. Some examples would be having a child born or change in job status.

I have been a working caregiver for over a decade now. While caregiving I completed my graduate degree, had my first child, move interstate, and had work promotions. I thought to myself recently how in the world did I manage? Looking back there were three key actions that I did always. The three key actions were….

Assess Adjust Create a System

Seems simple, right? Not necessarily.

Assessing involves you having all the information that you need to make an informed decision. That could be medical information, financial information, or even available resources. You have to gather information and that could take some time. If you don't have the time recruit help.

Adjusting: Once you have the information you can make a decision and adjust. This may involve others as well as time to implement. It can happen as long as you have a plan.

Create a system: Creating a system could be easy but what I have found is it may involve changing habits and restructuring current systems. An example would be cooking extra to make meals for someone each week. Another example could be moving a person your home either permanently or temporarily. Depending on the situation that can be a small or major process.

Are you a caregiver that can relate? Do you know someone who has had to do this? What can you share on how to manage care shifts?

Updated: May 10, 2018

Technology can play a major role to assist with caring needs for caregivers. Depending on the situation, some devices can allow a person the ability to be more independent or remain in their home versus living in a facility type of setting. I wanted to share my experiences with some of the technology and see if anyone can also share their thoughts and experiences.

Over the years, I have to admit that technology played a major role in helping care. It has been a great asset. Not all of the devices and gadgets are appropriate. As with everything it depends on the situation. I wanted to share my experiences with some of the technology and see if anyone can also share their thoughts and experiences.

Home Monitoring Systems

Home monitoring systems are an excellent way staying aware of what is going on the home. For caregivers, it can provide a peace of mind knowing your loved one is safe. Most systems have features that will send alerts when a specific event occurs. For example, using a smart phone or computer, caregivers can view how their loved is doing and see where they are located in the home. It is also possible to be alerted when when someone comes to the home and/or leaves (i.e. nurses or a delivery). Motion detectors are helpful to know when a person may be wandering at night. These and other features from monitoring systems add a level of safety in the home.

Installing a home monitoring system can be done by yourself or a technician can come to the home to set it up depending on the system that you choose. There are many brands to choose from and the cost can range from $199 to $400+. Keep in mind that because most of the systems are wireless, wireless internet may be required.

Electronic Medication Dispensers

Medication dispensers are starting to gain popularity. They are used to alert a person to take their medication and come with different features. Before purchasing one be sure to ask yourself these questions to help you decide:

  1. Is the person needing the device able to take medications without assistance once the meds are dispensed? If the person requires assistance to take medication, the dispenser may not be the best option.

  2. Do you need a tamper proof system? Some systems come with a lock and key to make sure that it can not be opened to prevent overdosing.

  3. How many weeks do you need to fill to be dispensed? Some dispensers can allow up to 4 weeks to be filled in the dispenser.

  4. Do you want the system to send an alert when a medication has not been taken? Some systems can send a message alerting the caregiver that medications were not taken.

PEHR: Personal Electronic Health Record

Providers are required to keep medical records on their patients. It is important for patients to have health records. Personal health records can be set up electronically. Some ask why create a personal health record when many providers now have a system that will allow you to go in and look at your chart. It is nice to have these systems but the records are still on their system.

If the provider’s system ever became compromised or unavailable when information is critically needed, like in an emergency, it is important that you have a copy of your medical record. Using an emergency as an example, what if you were in and accident and unable to answer questions about pertinent medical care? This is where a personal health record can save your life! Why? Because emergency personal are trained to look for any medical alert information so that wrong medication or procedures are not administered.

They are not only used for potential emergency information but also to manage care for complex care situations. A personal health record is a major asset when caring for yourselves or another person. Having all information in one place makes is easy to answer questions during appointments or admission process. Personal health records are affordable and come in different forms like bracelets, necklaces, wallet inserts, etc.

Tracking Devices

GPS devices and apps are virtually everywhere. Runners use them in the event they suffer an injury and needed to be located. Caregivers can use them for loved ones who may wander. Also, they are good if you use community services or transportation services that take loved ones to appointments or errands. Caregivers can easily monitor their location and see where they are at all times.

Do you have an experience with any of these types of devices? Do you have a device or electronic service experience you would like to share?

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