The Basics

First and foremost, this is a marathon, not a sprint. If you are not up to the marathon, find someone who is. There is no shame in not having the capability to handle everything. Not everyone does. It will be better for you AND your loved one if you find a way to share the burden. Because don’t be mistaken, it is a burden, and it gets really heavy.

Lets Start with the Basics

Get a binder

Medical records

Medications

Get a Binder

First and foremost, you will need to gather information. And you will need to be able to put your hands on it at any given moment. I suggest creating a binder to carry with you.

Note: For people who are more comfortable with technology than paper, feel free to scan everything into a file folder on the computer and “carry” it with you that way on a phone, tablet or laptop

Everyone’s situation is going to be different. The dividers for my binder are as follows:

Legal

This contained a couple of copies of the health directive – which gave me the legal right to act as my father's agent concerning health matters. If I had had a power of attorney for legal or financial matters, it would have gone here also.

Medical

This section contained a hard copy of all the medical records from every facility my father stayed in.

Housing

This contained all information on housing searches and tour reviews, in addition to paperwork relating to the old facility and the new facility.

Financial

This section contained all the information from various financial aid organizations, and since we had a go fund me…and quite a few people donated to my fathers care on their own, it also contained a list of “thank you” people.

Mail

Due to the issues in housing, I had their mail forwarded to my address. This section contained all incoming mail they received.

Correspondence

Anything that didn’t fit somewhere else…important phone numbers and the like, were kept here.

Knowing you can put your hands on any information you need is priceless.

Medical records

It will become very important to have copies of all the medical records for your loved one. You will need to know the names of the doctors attending them, and if possible, the names of other caregivers.

You will need to know what the doctors are recommending for therapy, and it will be up to you to make sure the therapy is happening.

NEVER ASSUME

If you assume that the caregivers will follow directions, they might, and there might be something left out that your loved ones really need to have provided.

You may also need to make an appointment with a doctor to have them explain the records to you. Bookmark a medical dictionary website like this one: http://medical-dictionary.thefreedictionary.com/ or purchase a small medical dictionary to use as a reference.

You are not going to understand what is happening at first. Unless you have a medical degree or have been through something like this already, you will need to educate yourself. Don’t stress about it too much. You do not need to know everything. You just need to know whom to ask.

Take notes. Ask questions. There is NO stupid question.

Side Note: You will probably learn things about your loved one that you did not want to know. Medical records hold no secrets, and if you or your loved one is a habitually private person, this WILL get embarrassing. I suggest making an agreement with them to not be embarrassed. (It doesn’t always work, but it will help.)

This is an important final step in the medical records section:

Find out what the doctors recommend for future treatment, follow up visits, and additional therapy. THEN MAKE THE APPOINTMENTS. MAKE SURE THE LOVED ONE KEEPS THEM.

MEDICATIONS

Make sure that you know what medications your loved one was taking before all this happened. Especially if they are taking meds that they need to live, such as insulin, or blood thinners. When my dad was admitted to the hospital, they completely changed his medication. When he went to the nursing home, they changed everything again. THEN when we went in for his follow up appointments, his original doctors were quite upset…and changed everything back to the way it should have always been.

All in the space of a month.

In addition, make sure you know what EXTRA medication is being given. My father was on restraints in the hospital due to his violent and confrontational nature. (A direct result of the stroke) When he was transferred, the nursing home was a “non-restraint” facility. Therefore, they had him on anti-psychotic medication. Which interacted with some of his other medication and prolonged the negative stroke symptoms far longer than was needed.