TOOL KIT FOR FAMILIES OF MEDICALLY ILL MENTALLY ILL PERSONS
ROY ARANDA, PSY.D., J.D.
My older son David is a special needs adult who as an adult has been living in a supervised setting for years. Last year, in September, David required hospitalization. He underwent major back surgery involving six vertebrae and subsequent admission to a rehabilitation center as a medical patient. This proved to be a challenge for both of us. As a professional well-versed in the treatment of the mentally ill, it was a harrowing experience and eye-opener for me. I was in the unusual position of navigating unchartered waters. There was a possibility that, without the surgery, David would be paralyzed and not walk. I can only imagine how scary it must have been for him during the wee hours of the morning before surgery, up until he was prepped, all alone, in the hands of the nursing staff and surgeon upon whom he depended to be able to walk.
David and I both “survived” his surgery, and throughout the ordeal, David displayed a great deal of courage. The month and a half that we spent so much time together further cemented our bond. I became painfully aware of how vulnerable David is as I now had an additional worry: his physical health and well-being.
The experience made me think a lot about the intersection of mental illness and medical illness, and I wrote, “The David Experience”: Tool Kit for Families of Hospitalized Mentally Ill Persons.
TIPS IN GENERAL
1) Make sure your loved one carries ID, name, phone number, names of important people (e.g. doctor(s) and phone numbers, name of residential facility supervisor, case worker, lawyer, responsible loved one(s)/caretakers. Perhaps a medical alert bracelet should be considered.
2) Make sure your loved one has the means to go places or call for help if there is an emergency: a cell phone (even if limited); MetroCard; ATM card for emergency access to money.
3) Tend to legal necessities: health care proxy; power of attorney; guardianship if warranted.
4) Have all necessary information about your loved one pertaining to his or her care, treatment, banking, etc. readily accessible as the need arises.
5) Be involved in treatment planning and ask to participate in treatment team meetings, etc.
6) Maintain regular contact with people involved in treating or providing a service to your loved one.
7) Make sure you have the names, phone numbers, and addresses of all your loved one’s “friends.”
8) Have an awareness of your loved one’s activities and how he or she gets there.
9) Monitor expenditures, especially if your loved one is on a limited budget and receives SSI/financial assistance.
10) Keep in mind that the mentally ill are vulnerable and more prone to being taken advantage of and victimized.
11) Monitor behavioral changes and emotional changes and intervene. Don’t assume or wait for things to go back to usual.
12) Make sure transportation needs are taken care of: for instance, Reduced-Fare MetroCard (MTA); Access-A-Ride; Able-Ride; Suffolk County Accessible Transportation Services, etc.
13) When and if you get the call at 3 am from your loved one that he or she is lost or stuck somewhere, be prepared to mobilize a plan of action that you’ve anticipated for such occasions, and do answer the phone!
14) Listen! It’s all about listening to your loved one. Words and meanings behind them may take on a special significance. You need a feedback loop: rephrase what you heard and ask if you got it right.
15) Don’t patronize your loved one. Talk to your loved one. Do not talk about your loved one to others within earshot. This is not the same as including your loved one in the conversation, which you should do. Do not be dismissive of what your loved one says or consider it trite.
16) Do not raise your voice as if your loved one will understand better because the volume is raised.
17) Ask your loved one what is important or how you can be of help as situations arise. Your goal may not be your loved one’s goal at a particular point in time. For example, when my son became visibly distressed in an acute rehabilitation center after being discharged from the hospital where he had undergone major spinal surgery because some of his personal effects had not gone with him, at that moment, resolving this problem was more important to him than talking about his rehabilitation. Once addressed – phone call in front of him and feedback about what I said and how I planned to follow-up – he calmed down and was ready to talk about his rehabilitation.
18) Recognize your own feelings of anger. It is normal to experience anger towards family members. You may be inclined to deny the emotion or feel guilty about being angry towards a mentally ill loved one. It is important to acknowledge it and try to understand why you feel angry. And find a healthy balance between minimization and denial and exaggerated anger in dealing with your loved one. Your loved one will pick up on your reaction and will interpret it in a manner that stems from his or her belief systems. This may or may not include cognitive distortions and thinking errors. Modulating your emotional response may be difficult to do at the moment you experience it. But thinking about it and studying your reactions can help you anticipate and plan for future occasions.
19) Recognize and strike a balance between being excessively giving or yielding easily to your loved one’s demands, and being overly restrictive. The former may encourage learning to be helpless and reinforcing helplessness (after all, you are there to take care of everything) and manipulativeness on their part, and the latter, “tough love”, may lead to frustration, especially if your expectations exceed their capabilities, avoidance, not telling you things, and increased feelings of depression and helplessness. Try to study and understand why you are overly giving (at one extreme) or why you are overly driven towards “tough love” (at the other extreme).
AT THE HOSPITAL/HEALTH CARE FACILITY
1) Try as much as possible to be there at the time of admission; if not, as soon after as possible.
2) Find out necessary information about the hospital.
3) Get all necessary information about treating doctors, specialists, charge or unit nurse(s), and PAs. You can access information about their credentials, background, and experience on the Internet if invasive procedures are recommended.
4) Get a second option.
5) Speak to the doctors.
6) Give your name and phone number repeatedly at the hospital and over the phone. When you leave messages always say and spell your name and leave phone numbers (I repeat name and phone number twice).
7) Follow-up if you don’t get called back and document who you spoke to, when, and about what.
8) Do an inventory upon arrival at the hospital (or as soon after as you can). Take all items that your loved one doesn’t need during a hospital stay with you.
9) Make sure your loved one has clothing and all necessary amenities.
10) Do an inventory at time of discharge.
11) Keep all outside caretakers notified/involved at all stages of the hospitalization.
12) Make sure you have necessary background information about your loved one’s treatment/healthcare needs: treating doctors; medication and doses; if injections are administered, name of medication, dose, frequency of administration, and when last administered; special test results; etc.
13) Make sure you know what the discharge plan consists of and that you agree.
14) Talk to the physician in charge of your loved one’s treatment.
15) Be there at time of discharge.
16) Ask for the discharge papers.
17) Talk to everyone with whom a follow-up consultation was recommended or set up.
18) Comply with the recommendations.
19) As much effort as it takes to visit your loved one and advocate for him or her, consider that you are a lifeline. Think about what it would be like if the shoe was on the other foot, and that without your help and advocacy how easy it would be for your loved one to slip through the cracks.