The top 10 things nurses need to know, caring for adults with intellectual disabilities! 

 

In nursing school we are taught to care for many different clients. Whether it be of different nationalities, cultures, gender, age, etc. In nursing school one of the main clientele that was skimmed over or completely missed was, adults with intellectual disabilities.  In the picture, is my brother and I. My brother was born with down syndrome. How my mom used to explain it to me growing up was that, most people like you and I, have 46 chromosomes. With down syndrome they have 47. Then she went on to explain what a chromosome was to a 5 year-old as best she could. It resulted in me calling my brother for at least a year the nickname “chromosome man”. I thought he was a super hero! My brother is my superhero though. He is the most resilient, happy, caring, sweet, authentic, person I know! In my 12 years of nursing I have went into several different specialties of nursing. Currently I am caring for clients with intellectual disabilities in an intensive care facility.  I am also my brothers legal guardian and he lives with me.  With all this experience combined, I feel there is at least 10 things that I have learned and wish I/we would have known starting out. Some of them might seem like common sense, but you would be surprised, how some people just do not know how to act around someone with a intellectual disability. So to help clear out some myths, and give you some more tools in your tool belts of nursing. I have created a list.

1) There is no one size fits all!

As with all clients there is no one size fits all. Sometimes we like to put people in categories and characteristics. They are more than their disorder, they are individuals. They have different likes and dislikes. As mentioned before my brother is down syndrome. What he prefers is not what another down syndrome might prefer. Early on I would expect some of the same things out of clients that my brother can or cant do. When in all actuality, David is David, and we all have our differences.

2) Trust is a must!

This is true of everyone! But in adults with disabilities its even more so. If you break their trust it is really hard to get back. Not only is it hard to get back, but you could be setting up future health care providers, friends, and family for failure. Sometimes adults with intellectual disabilities do not associate a lack of trust with a certain person. For example, if a blonde haired women angrily hands them a snack when they ask, and is usually rude. Then they might start associating blonde haired women as angry and unkind. As a health care worker this was hard for me to understand. Because I tend to take it personal at first, but when you really step back, you do not know what happened to that client in the past, and if for whatever reason, they may decide that they don’t trust you. I had a client who does so much better with male staff than female. In his history there was some abuse from a female caretaker. As a nurse I still care for him of course, but sometimes he just might give me a harder time, or his primary male assistant might need to be with me so he feels comfortable. If there is a male nurse I might have them help with this client.

3) Be authentic!

One important lesson I have learned while taking care of adults with disabilities are they are expert body language readers. You might be telling them your okay or trying to act happy, but they know. The ones that can, will also call you out on it. I was overwhelmed at work one day, and started thinking about all the task I had to do in a certain amount of time. When I went up to a client I thought I had done pretty could of turning off my stress. I said nice things to them, and was pleasant, but they ended asking me what was wrong, that I seemed like I didn’t feel well. I was taken back at first, because I thought I was hiding it well. Then I felt my posture, it was tense and I had one foot pulled away, just waiting to run to the next task. I was also speaking fast trying to rush conversation. After I thought about it I realized just how much they are watching. They know the ones who come to sit with them on breaks, or stop and talk to them for a minute. Or simply just say hello, how are you today! They can pick up if you really want to be there or your just going through the motions. If you are having a bad day, like we all do, they will know. You don’t have to tell them about your problems, but just be authentic and let them know, I am having an off day. They understand, and that is much better than rushing and faking.

4) Just because they can’t talk doesn’t mean don’t talk to them!

This is really important. Just because some of the clients can’t talk, doesn’t mean don’t talk to them. They still need to have things explained to them. Sometimes they like jokes or not, ha! One nurse woke a client up singing and she thought he really like it. Turns out the client finally shook his head no, he didn’t really like being woke up singing! We can’t assume. Just like we wouldn’t want someone assuming are likes and dislikes. I am guilty of this. I assumed my brother wanted the TV for background noise at home. It was always on at my moms house. I came into the living room one day and it was off. I turned it back on and my son goes what did you do that for. I said David likes the background noise. He said well did you ask him. I said no, and my son proceeded to ask my brother if he wanted the TV on and to my surprise, he shook his head NO! My brother is very laid back and just goes with the flow most of the time, but when asked he can say yes or no! That was a lesson learned!

5) They have good days and bad days too!

Don’t take it personal. One day they might be smiling and glad to see you. The next day, they would rather you not touch them. Just like us they have bad days. We can get away or tell people to leave us alone. Some of them can’t, so your coming up and smiling and asking them to do things, and they just wanted to stay in bed. You can see how this could be a recipe for disaster.

6) There are usually many other chronic diseases that they have.

Unfortunately, these clients tend to need a lot of medical care. Many have heart conditions,  High blood pressure, thyroid problems, reflux, diabetes, asthma, and gastrointestinal problems. This can be difficult to manage in these clients especially if they don’t quite understand some of the treatments their getting and they just flat refuse them. This is were trust comes in and familiar caretakers can really help! Adults in facilities will eventually go through hundreds, if not thousands of different caregivers in their life time. That’s a lot of different people!

7) Family is super protective, don’t take it personally!

I love when families come to visit and are involved in their care. Many of the family members would rather take care of their family member at home. For some they can’t because of their health, age, or the client needs more healthcare. When they come in and ask you a million questions and the same ones. Or show up on a war path, just know they are their loved ones voice. I’m not saying they can become violent or belittle you! That is different, I’m just saying try to put yourself in their shoes. Someone you love is being cared for by strangers, and their family member can’t tell them something is wrong. They want to be informed, that is all. They also want to feel like they have some control still, and that’s okay!

8) It all comes down to poop!

Another thing that is a major concern for these clients is the poop! Think about it, they can’t answer your question, when was your last bowel movement. They are very prone to constipation. Most of the clients I take care of actually have a chart we use to record them and a protocol we follow if they go to long. If this isn’t caught, it can cause bowel obstructions or even seizures!

9) Seizures are very common in this population.

This was my first nursing position where I really had to monitor and treat seizures. I was shocked at how many of these clients have seizures, or it’s in their history. Learning what their triggers for seizures are and prevention is what we strive for. Also making sure their seizures are managed and do not become a epileptic emergency, which can happen.

10) Have fun with them!

Last but certainly not least, have fun with them! If they like playing board games, sit down and play. If they like to dance, have a dance with them! Make them part of the conversation! They want human interaction and friends just like you and I. I have learned so much from these special people. They teach me everyday, and it is truly an honor to be a part of their lives!

 

What is Lupus? (Selena Gomez is a Warrior!)

Lupus has started to get some attention recently and it is a good thing! It’s important that everyone is aware of what Lupus is, and what happens to people with this disease. Unfortunately, many people with Lupus suffer in silence, because people just don’t understand. If you have watched the news lately or keep up with the entertainment industry (guilty), then you know Selena Gomez opened up not long ago, and was outspoken about her struggle with Lupus. Then Selena Gomez was notably absent this summer, and fans where told she had a kidney transplant! This was shock to many, but understanding what Lupus is, and how it effects people, it becomes clearer why a kidney transplant could result. Some of you might know by reading my blog, and I guess my name Ha! I am a nurse. I know about the basics of Lupus, but also wanted to learn more myself about this disease. I was also a transplant nurse and have taking care of transplant patients while recovering from surgery! So I would like to discuss with you what Lupus is exactly, what causes Lupus, Is Lupus treatable, and how do you live with Lupus!

 

What is Lupus?

 

Lupus is an autoimmune disease. Stay with me, I will explain autoimmune! Your immune system is a well-oiled machine, and when you have an illness or disease, it kicks it up into high gear, and defends you from foreign invaders. What happens with Lupus, is your immune system loses its ability to do this, and cannot decide what is a foreign cell or healthy one. So it decides to start attacking both. So now the immune system is attacking the body like tissues, joints, and organs! This can cause pain, inflammation, and organ damage. Lupus is not contagious, so you cannot catch it from someone who has Lupus. Lupus is a direct result of the malfunction of the immune system. When people hear autoimmune or anything with immune in the title, the mind starts to shift to HIV/AIDS. Lupus has nothing to do with this either. In HIV/AIDS the immune system malfunctions, and it starts getting slower, and stops reacting to foreign invaders like the flu. In Lupus the immune system becomes over stimulated, and starts attacking everything. It seems Lupus mostly effects women of childbearing age, but that is not set in stone. It can develop in men, children, or people of any age. Women of color are 2-3 times more likely to develop Lupus, then Caucasians (Lupus Foundation, 2017).  Lupus can also be mild or severe, and over the course of time fluctuate from mild to severe. There are flare ups of the disease, when symptoms can be worse. With Selena Gomez her Lupus was severe enough to cause organ damage, and this is what most likely led her to need a kidney transplant. Some of the symptoms of Lupus are:

  • Pain in muscles and joints
  • Anemia, fatigue, fever
  • Mouth dryness and/or ulcers
  • Red or scaly rashes (Can take the form of a butterfly shaped rash across the cheeks and nose)
  • Hair loss
  • Depression, anxiety
  • Water retention
  • Weight loss

These are just a few of the common symptoms of Lupus.

Image result for lupus rash picture cartoon

*The butterfly rash that can form on the face related to Lupus*

Is Lupus Treatable?

 

Yes, it is. There is no cure for Lupus, but managing the symptoms can help people with Lupus live a full life. This requires a health care team approach. There will be a doctor who specializes in the diseases that affects muscle and joints (rheumatologist). Many other physicians can be in place because of the nature of lupus, it effects the whole body. The goal of treatment is to reduce inflammation caused by Lupus, suppress the immune system so it will stop overreacting, try to prevent flares, control pain in muscle and joints, and minimize organ damage as much as possible.

 

Can you live a full-life with Lupus?

Lupus needs to be closely followed by doctors and with consistent treatment patients can expect to live a normal life span. The Lupus Foundation (2017), states that 80-90% of people with Lupus, can live a full-life. Unfortunately, to date there is not a cure for Lupus. People do die from Lupus, but with treatment most people with Lupus will not have fatal outcomes. As long as awareness and treatment are provided!

 

I personally do not have Lupus. I do know a couple of people who suffer from the disease along with, I have treated some patients with Lupus before as a nurse. It is hard to imagine the struggle they must have with this disease. It is important to get educated on this disease, so if you do know someone with Lupus, you can have a small grasp of what Lupus is, and how they may or may not be affected. I am really impressed with Selena Gomez, that she decided to open up and let us all in, to see her struggle with Lupus. She is a rock star! (I guess both figuratively and literally) I personally hope that the message gets out there, and more research can be put into why this happens, and for a cure! For more detailed information go to www.lupus.org, it is full of the latest research in Lupus, and even how to donate for the cause!

 

References

Lupus Foundation of America (2017). Help us solve the cruel mystery. https://www.lupus.org/

 

*On a side note, I am thinking about making some medical related post, maybe on Mondays, I could call it “Medical Monday”Ha!* God Bless!