A Grandmother's love and Why it's important to advocate for your loved ones

I started taking care of my Grandmother full time about 5 years ago. At the time, My husband and I had just completed the transition of our Foster Daughter (For privacy I will call her Sunshine) Sunshine's reunification with her Bio parents. Sweet little sunshine had been in our home for 5 months and in care a total of 18 months. While we knew the goal was and had always been reunification, she was by far our hardest goodbye! So with this difficult transition, We decided to take a short break and concentrate on us after a hard transition. Sometimes, things change and you never know when you will be called into another direction... like a completely other direction. Shortly after Sunshine's departure, I began taking care of my Grandma full time.

A GRANDMOTHER'S LOVE

Grandmothers are special aren't they? From the moment you are born, they have a overwhelming desire to love and bond with you! There's nothing to truly describe the bond between a grandmother and grandchild. My Grandmother is so special to me! She has taught me so much over the years. Her love of sewing, cooking and family will always be something I look up to and strive to have. She is someone who you will always feel a warm welcome from and who you can talk to about your worries with ease. (And guess what, if she doesn't have an answer that can help...she'll just whip up a pie to cheer you right up! )  I do and will always have a special place in my heart for her.

When I first started taking care of my Grandma, It was very simple. We would run errands together, Shop, Go to appointments but with aging, it has blossomed into more full time care. Please don't get me wrong, this has never seemed like full time "work" because I truly enjoy getting to spend time together but there is a significant difference in her care from the start to now. Now we go to multiple Doctor appointments each week, we have nurses that come into the home 2-3 times weekly, we have multiple and extended hospital stays, we worry about falls or sickness (I can't tell you how many times we have had to make decisions on is this a true emergency...should we go to the ER or is this something that can be waited out) These things happen with age or with sickness and are to be expected. What I didn't expect was the overwhelming need to advocate for her. This in and of itself has been the most eye opening experience about the way Elderly are looked upon in Healthcare.

Why it's important to advocate for your loved ones

Oftentimes when people age they lose their ability to stand up for themselves. Their fight or apprehensiveness about a situation can be lost or swayed. Without an advocate, they could fall into this trap (And I don't say trap lightly) of being swayed into making decisions that they once might not have made. About a year ago was the first time I really began to notice the need for an advocate when dealing with my Grandmother's health. We had been at the ER for most of the evening and were told that the reasons for her coming in were due to her advanced age and that there was no real reason to admit her into the hospital. We knew there was something else going on, I mean come on, she has been an "Advanced Age" for sometime now. That just wasn't a good enough answer for us. After standing our ground, giving push back and voicing our concerns, it turns out she had sepsis! Which is a scary infection and it can be devastating if not caught early enough and treated. What if we wouldn't have been there and they sent her home? What if she went into Septic Shock? To many what if's could be mentioned here and thankfully she was able to be admitted and treated but how did this happen? How did they miss this and blame it on her age?

Hospitals and Emergency rooms are busting at the seams. Most are understaffed and Doctors & Nurses are being run ragged. Emergency rooms have turned into 6-8+ hours wait for some people. Perhaps some of this is from all of the non-emergencies coming in and I'm sure that they all go in a severity order but that is just so unreal to me. I always try to remember these things when we are there. Even with all of this said, don't let that stop you from voicing your concerns as long as they are valid. Even on the busiest of days, if your loved one isn't being treated with a plan that you and the love one agree on....Stand up and voice your concerns. 

How to advocate for your loved ones health while they are in the Hospital

1. Ask Questions This is especially important. If you don't understand what a Doctor is telling you, ask them to explain it in a different way or in simpler terms. Though I get frustrated with our hospital, in general they are a good hospital with knowledgeable staff. It is a teaching hospital so I am able to get the Doctors to explain to me in simpler terms if I don't understand it. They have also brought in Ipads/Computers to show me exactly what is going on and I really appreciate it. Even if you aren't at a teaching hospital they should be able to explain to you exactly what is going on and their plan of care.
2. Speak Up If something doesn't feel right to you or you disagree with the plan of care, Speak up. Voice concerns for your loved one if they aren't able to themselves. This should be something that is brought up with a nurse or staff member first. Ask your nurse if he/she is able to tell the Doctor your concerns and if need be, ask to speak with the Doctor as soon as possible either in person or on the phone. It may be hours but eventually they should get in touch with you. Tell them your concerns, frustrations and see if you can come to an agreement. 
3. Reach out If you cannot come to an agreement reach out to your hospitals staff such as Patient Advocacy, Case workers, Medicare or if need be, Directors. If you get to this point (and we have!) I suggest keeping a journal of each person you have spoken to and what they have said. In this journal write dates, names, medicines given, procedures, when you first brought up concerns, what doctors and staff have suggested and what your concerns are with the plan of care. Typically once you get to this point, you should be considering second opinions, asking for a new provider or even looking to be moved to another hospital. Obviously this is not something that should be done for every single problem you have but if it's serious enough, I wouldn't back down. 

If your loved one is using any form of Medicare or even Medicaid there also options through them to file a grievance or dispute. You can file a dispute if you feel like the hospital is discharging to soon. While we've never used this, It can get you 24-48 hours more in the hospital for them to look over what's been done and see if it's appropriate to send them home. 

Taking care of my Grandmother has taught me so many things about healthcare and how to be her advocate. I am planning on writing another post on programs we have used to get her the best care possible and how she is able to stay home instead of going into a nursing home facility. If you have questions about how to be your loved ones advocate, please feel free to ask them below or send me an email! I would be glad to help with suggestions or more info on how to advocate for them!