A friends recent experience with her adult special needs son’s hospitalization has made me realize just how important it is to have a family member serve as a patient advocate in the room 24/7. Hospitals are busy places and it is easy to get lost in the hustle and bustle of meeting patients needs. Doctors are coming and going, technicians are running tests, lab workers must draw blood, nurses are administering medications and all of this busy work needs someone to co-ordinate and share information with staff and family members. If your special needs loved one has problems understanding or communicating…this can be a problem.
Things can change pretty quickly when there is a medical emergency or illness. It is important to receive the best care to have up to date information for both the staff and the family members. How often do medications get changed, or medical devices need to be removed or hooked back up during a hospital stay? Providing personal care that your loved one may not want from the medical staff can mean more co-operation from your special needs patient. Having a family advocate in the room can help ease discomfort if your patient is paired with a roommate who is NOT special needs. These are all issues many people have not thought about.
Keeping a small notebook by the bed to write down any changes that occur during a change in staff shifts can be critical to making sure that your loved one receives the best care by making sure that everyone is on the same page. You as the family member patient advocate knows your loved one the best. You know what is normal for that person. You know how they communicate, how they act, how well they understand questions and instructions…the hospital staff needs your input.
Because hospital stays can be lengthy…it is wise to have 2 or 3 people who are willing to rotate with you that you trust to stay in the room while your loved one is hospitalized. This means that extra eyes and ears are available when the doctors, nurses, aides or technicians come in to discuss care with your patient. Plan ahead and discuss these issues with other family members or trusted friends who have a good relationship with the patient and are willing to stand guard over them while they must be hospitalized…you won’t regret it.
There are things you can do to help out the staff and make your special needs loved one more comfortable. Just being there for moral support is important. Keeping a trusted loved one nearby can help to keep the patient calm and co-operative when change occurs. Take along hand-held video games, or stuffed animals or books or movies…anything that you know will help the hospital room to be as familiar and comfortable as possible. As I said, you know your patient best…you know what works for them…maybe it is a certain kind of music that they like or that brings them comfort.
Whatever you can do to reduce stress and stain will help your loved one to heal faster and get them back into their comfort zone as soon as possible. Do you have suggestions for what works for you?
I read an article that says that with prenatal genetic testing, performed before the 24th week of gestation that indicates a fetus will potentially be born with Down’s Syndrome, means that 90 percent of such parents have/or will choose to abort that pregnancy.
This means that less children are being born with Down’s Syndrome, it is a disorder that can affect the bodily functions of the person affected, they can have thyroid disorders, mental retardation, heart defects, reflux, ear infections, sleep apnea and some obvious facial cues such as a round face with small chin, and eyes that are almond shaped with an upward slant at the outer corners, they may have shorter limbs than the average person along with poor muscle tone. Many people are fearful that they can not handle raising a special needs child who is affected by Down’s Syndrome because of ignorance of the disorder.
I wonder if by doing these prenatal genetic tests, parents are unprepared for the outcome of information. Finding out that your unborn child has a disease/disorder/illness is only the first step. What happens after that information is presented to the parents? This information has to be dealt with in some means or fashion. Sometimes there are procedures that can be performed on the unborn child to improve it’s health and well being; other times there is nothing to be done. This is when some people decide to choose abortion as opposed to raising a child with special needs. You can learn more about this disorder here: http://www.ndss.org/ or here: http://www.nads.org/pages_new/resources/down_orgs.html
Abortion is a forever decision…there is no do over. What happens when one half of the parents wants to choose life and one wants to abort? Or one wants to risk surgery or medical intervention and the other parent disagrees? These issues can cause unbelievable stress and frustration…not to mention spiritual unrest when faced with a life and death decision regarding their child when it goes against their religious beliefs. Time is often the catalyst for a hasty decision. There were examples in the news story that talked about women/couples that made the decision for abortion…only to have future interaction with an individual with Down’s Syndrome, only to say later that if they knew more about the condition maybe they would not have chosen abortion.
Every life has value…fear is such a strong emotion that I think it can cause people to make a decision about abortion that they may live to regret. If a person or couple truly feels that they are ill equipped to raise a child with Down’s Syndrom than I personally believe they should bring the child into the world and allow it to be adopted. There is no shortage of people who wish to adopt and to parent a child…many people feel a calling to parent special needs children. There are some people who consider the child born with Down’s Syndrome to be a “gift”; or to be endowed with an extra-ordinary ability to love unconditionally. We should all be born with such a condition which causes us to love unconditionally!
I heard about a news item recently, it discussed an alleged criminal conduct case that is being investigated regarding some staff members of a residential home for the disabled. The news report was talking about how the staff was alledgedly “bored” and encouraged/forced some of the residents to fight one another. If that is true that they did this, then, that is not a fight club…it is abuse and neglect, and failure to protect. There is supposed to be a video that was allegedly proves some of these accusations.
This, if proven to be accurate, is a criminal offense and charges will be forthcoming; hopefully, it will show those who were responsible for such actions against the disabled residents. According to the news report, the residents did not want to fight one another…the small numer of staff are being accused of chasing some of the residents down the hallway and forcing them to fight one another. Investigations take time, so it is important to not assume anything, just yet, regarding those rumored to be associated with this case. However, residents deserve to be treated with respect and dignity; they should feel safe at all times.
These accusations, if they are proven true, are frightening to those of us who have disabled loved ones. It is not easy to make the decision to place a loved one in a facility. Once that decision is made, trust is a big factor in allowing yourself to have peaceful moments. Most families do research, on available residences for the disabled; but, ultimately you have to go with your gut and trust that things are on the up and up…and that your loved one is safe. You hope and pray that you are never proven wrong about trusting a facility and making a decision for placement. Still, staff members come and go…I think it is wise to remember to follow up with periodic drop in visits…and, have conversations with your loved one, when it is possible, about the day-to-day operations in the place.
No one can or will take care of your loved one exactly like you do. However, it comes down to some basic safety & caregiving facts. Are the staff & residents carefully screened with criminal background checks? Are there seperate secure residential rooms for those who have been violent in the past? What precautions are taken to ensure physical and sexual safety for the residents? Are they properly trained and geared towards delivering care with sensitivity? Are there any complaints on file about the facility? Is there enough staff on duty, at all times, to ensure that things are done correctly and safely? Do they have an open door policy for family members? What are the proper procedures for complaints, if an issue or question should come about regarding your loved one? Are other residents screened for previous physical, and or, sexual abuse? Are there cameras in the hallways? Are there phones available for the resident’s use? How does the staff interact with the residents? Does your loved one ever express concern or fear about living in the facility?
I dont know about you…but, when i hear about stories of abuse or neglect in homes or residential placements for the disabled it makes me angry. The disabled are one of the most vulnerable segments of our population and they should not have to be put through these kinds of situations. There are some really great places for the disabled to live and when reports come out about the places that have exploited the disabled or endangered them; it is discouraging. Have you ever had to place a loved one in a facility? Do you have any words of advice to share with the readers on these issues?