Managing Difficult Health Situations Within your Family

Note: This is a lot different from my usual content, however, I feel this type of information is important. A lot of us are starting to deal with aging family members. It can be difficult. There isn’t a lot of readily available information out there. As someone who has spent the past 13 years advocating for my kids, I feel that I have a unique perspective and insight into how we as healthy, able-minded folks can help our ill and infirm relatives navigate tough health issues to receive care.

A lot of us Gen X and older Millenials are starting to reach the age where family members are having age-related illnesses, and or passing away. My dad passed away about 2 years ago, and he was sick for almost a year. Managing and navigating illness in the 21st century is very different than it was even 40 years ago. Here are a few things that I’ve learned on this journey:

The doctor/specialist who is dealing with or managing health issues (like cancer, mental health, or cognitive issues) may not be equipped to deal with all aspects of the patient’s health.  This is especially true if the patient is seeing a specialist.

Part of the Team: Make sure to loop in your family member’s primary care physician. The primary care physician may not communicate with other doctors in your care team otherwise. They may not know that you have a long-term illness if they did not diagnose you. Your primary care physician can also help you with any side effects or additional issues that may arise from the treatment of your new condition. For example, some medication can cause G.I. issues, and your primary care physician may suggest prebiotics and probiotics, or changing vitamins and supplements to be a little more gentle on the stomach.

Getting help from an Expert: All hospitals and medical centers have social workers. The social worker is your best resource for help navigating the healthcare system. They are an incredible resource, they have so many ideas and suggestions, ways to help your family, and they have access to help you obtain services that you may not otherwise be aware of. They can refer you to services within the health care system, and frequently they have connections externally as well for other resources to help the patient and the family.

If you have a family member who is ill at home and requires constant care or attention, you may qualify for respite services. Respite is for the caregiver of the sick individual. It pays for someone to come into your home and provide care, so the usual familial caregiver can rest or spend time out of the home alone, doing errands, etc.

Some insurance companies provide respite for their patients. Many states offer respite services for specific groups of individuals (such as people with developmental disabilities, dementia patients, or those on in-home hospice). Contacting the medical group social worker or insurance company is a start to finding out if respite is available to you.

Some insurance companies also offer assistance with pick up or drop off if your family member is at home and needs to visit the doctor or hospital frequently.

Medication: Make sure that all of the medication the patient is taking goes to the same pharmacy. Pharmacists are trained to look and make sure that medications are safe to be taken together. Especially when dealing with a long-term illness or something that affects several parts of the body, it’s good to know that all of the medication being dispensed is appropriate and safe for your loved one. You can also ask if over-the-counter medications (such as NSAIDs, single-letter vitamins, or herbal supplements) can still be taken with new medications.

Medication delivery is sometimes available either through the hospital pharmacy, or chain pharmacies like CVS. CVS Care Pass Members can get most of their medications delivered for free.

Other changes and getting help: Are you worried about your ill family member eating properly now that their life has changed, and their nutritional needs may have also changed? Ask your doctor for a referral to a nutritionist. Also if your family member is insistent on maintaining their pre-illness/condition way of life, they may need to see a physical therapist, or an occupational therapist to make sure that their body is strong and able to maintain independence.

It’s not all in your head: In addition to physical health mental health is important as well. Getting a psychiatric or psychological consult to meet with a psychologist or psychiatrist may be beneficial. A lot changes when you receive a diagnosis. And it can be hard on the entire family. Not just the patient. Having resources and an impartial person to talk to and help you is definitely something that everyone involved should seek out.

If your family member isn’t sleeping well, or they have started developing nightmares or are not getting restful sleep, see if you can see a sleep consultant. They can check for sleep apnea or help with strategies (beyond just medication) that will help the patient get restful sleep. Sleep is definitely important when your body is dealing with an illness.

You are not alone: Many specific illnesses (types of cancers, specific neurological illnesses/disorders) have support groups, and nonprofits that can help family members too. So if you are dealing with a specific issue, a quick Google search can help find a community of caregivers and patients in your area that have gone through what you and your family are going through, and they can provide a wealth of specific helpful resources in your area.

8 Gifts for the Sensory Seeker on Your List

There are a lot of reasons people are sensory seekers- For the most part, Fidgets and the like keep their bodies busy and it allows their brains to focus. People with ADHD, ODD, ADD, ASD, or simply those who are very stressed, may “fidget” to help focus.

Fidget spinners, doodling, and tactile small toys are all great. Some people who are sensory seekers (whether they know it or not), require more such as deep pressure or being bundled up. Regardless of whatever type you have, here are some of our favorite gifts that have helped our family:

Remember the Bop It toy from the 90’s? Twist it, pull it, bop it? This Fidget cube is the smaller, more discreet version. With 6 different tactile fidgets, it’s a great way to discover whatever kind of sensation works best.

If you are looking for something bright and colorful, a little more engaging…
These “snake” fidgets as we call them, are IT.

We have some in the sensory box, my car, and the kids’ backpacks. They are fun- you can make a circle, or a snake, my son likes to bend them in weird ways and pretend it’s his mustache.

If you are new to the world of fidgets and sensory toys, this is a great “starter pack”.  It has all sorts of great small toys. They are discreet too.

Some people need sensory items to help them decompress. Items like weighted blankets are great for this type of need. Weighted blankets act like a hug and release feel-good hormones in your body, and help quash the stress hormones like cortisol (1). Weighted blankets for adults should be 10% of their body weight. For growing kids, it should be 10% of their current weight, plus 1-2 pounds to allow for growth (2). I really like this weighted blanket, especially since it has a removable cover. It comes in 2 sizes and 4 different weights.

My big kid loves being wrapped up in a blanket, almost like being swaddled. That gets exhausting after a while, so I took to the internet to find a solution.

Hug Sleep, Sleep Pod is perfect. Especially with a weighted blanket on top!

For fun time, when rolling around and being silly, we’ve found that this stretchy sack is tons of fun, and helps him regulate. And yes, these type of sacks come in adult sizes too!

The next item, while not a toy or fun doodad, is essential in my mind. Not just for sensory seekers, but for those that just need a break from sounds. Loop Earplugs are a life changer. My big kid is easily overwhelmed by sounds, especially out in public, or when his sister is having a hard time herself and is vocal about her troubles. They are discreet too, which is important for tweens and teens.

The last two items are both in my car at all times.

Some sensory seekers chew. Were you a pencil chewer as a kid? Always have gum at your desk? “Chewelry” or silicone jewelry that’s meant to chew on keeps your pencils and fingernails safe.

My big kid has these sweet shark tooth necklaces. There is one in my car (and one in his backpack). He informed me that all the cool kids at school have them. He also told me some junior high girls have pacifiers- which was popular when I was in high school…

And finally, these Liquid Motion Bubblers are great for helping kids (and adults) calm down and center. Remember a few years ago when DIY calm-down jars were all the rage? These are a much better idea- They aren’t going to open and get everywhere. One of these lives in my center console for when kiddos need to listen to some quiet music and re-center themselves.