Monday, November 5, 2012

A Patient's Top Ten Tips For Surviving A Long Hospital Stay

Many of you will remember that my husband Jonny was rushed to hospital this time last year. He had been suffering a resurgence of an extremely painful facial nerve condition called **trigeminal neuralgia that had spiraled out of control. His medications had stopped working.

The internist couldn't find new meds to control the pain.

The neurologist was out of ideas for treating it. 

And  Carol the Physician's Assistant to one of the finest neurosurgeons in the world at Johns' Hopkins Trigeminal Neuralgia center was at her wits end. 

Finally, Carol arranged for Jonny to be admitted into Hopkins in Baltimore, for IV pain relief and in the hope that once the surgeon eyeballed him in his out of control pain, he would find a slot for emergency brain surgery (MVD) which hopefully would relieve pressure on the trigeminal nerve. (See Brainstorming for Jonny's experience in hospital and first weeks at home.)

So began a stay in hospital for Jonny that stretched over 2 weeks, with a 6 hour brain surgery in the middle.

It was a stay full of complications and little rest. A time of great fear and huge pain, both emotional and physical.

It takes very little time to become institutionalized in a hospital. You have no idea of time or day. You are woken repeatedly 24/7 for vital signs checks, food, blood work and neurological updates; none of which are coordinated. There is little privacy, lots of noise and many, many people involved in your care. You have little control over your personal space, the timing of people's visits and your environment. 

A hospital is not the place for rest and recuperation.

But some preparation definitely makes the experience more bearable and comfortable.

After asking my friends for their ideas, here combined with our experience is a list of the top ten tips that made a difference to many patients who spent more than a couple of days in hospital.

1. Forge a relationship with a medical professional in the hospital who can act as your point person. You will interact with so many different personnel who may or may not have read your medical notes. You need one person to ask all your questions to and follow through on your care. This person can be very difficult to find but can make a huge difference to your in patient care and experience.

The wonderful physician's assistant I mentioned earlier, was ours. We had Carol's direct email and phone number and I called her many times over the 2 weeks to help sort out miscommunications. She was a life-line for me as caregiver as much as for Jonny as patient.

2. Have an advocate by your side as much of the time as possible, taking notes, particularly to make sure the meds you are getting are correct. Have a list of your medications with you and keep your internist/GP up to date on your situation. After surgery as Jonny was moved from the ICU to the neurological ward one of his regular meds was dropped off the list and we did not discover it was missing from his regimen for 4 days, resulting in needless side effects and discomfort.

3. Bring home comforts such as

  • your own pillow with a colored pillowcase so you can spot it easily to take home again
  • warm socks/slippers - hospitals can get cold
  • your favorite blanket and one for your caregiver- cosy and homey
  • Your own pyjamas.
  • Changes of clothing and underwear and a laundry bag

4. Bring in your favorite  food/snacks  that will nourish you and you can eat in your own time. Ask for a fridge. Hospitals often have some they can bring to your room if you request one. 

For our cups of tea, milk was vital and the fridge was great for storing it and the sandwiches my mom lovingly made for us, that I brought from home every day. I also made cups of English tea for the nurses which they loved and offered them English chocolate! Appreciating their care and thanking them is more than worth the trouble.

5. *Bring your own toiletries -deodorant, lip balm, moisturizer, shower gel, make up, dry shampoo. (and electric razor for men so that they can shave in bed.)  and your own bath towel if you would like one that actually fits all the way round your body!

6. Bring reading and writing materials for both the patient and caregiver. Magazines, puzzles books and short articles are good because of all the interruptions and things that make you laugh-because laughter really does help with the stress. We asked our friends to email us jokes and funny stories  and one dear friend from the UK emailed Jonny  a daily update he called, "The Daily Cannon"- with a short video clip, a piece of music or amusing news item. 

7. Bring all things electrical that help keep you in touch with the outside world via email, Skype and Facebook as well as phone:- cell phone, Ipad, laptop and REMEMBER THE CHARGERS and earphones for privacy and comfort (yours and others')!

8. Have your favorite music/ movies/ meditation guide - each or all of these can be soothing, stress reducing and provide relief from the hospital malaise and ear plugs if you want to drown out noise or the patient in the bed next to you.We found a great free meditation app on Itunes to download called Simply Being.

9. Ask a companion to support the caregiver and hear instructions. This is particularly important  if  you are not in a fit state to take in the information. My friends supported me as I advocated for Jonny. They also helped me manage the flow of visitors and information to family and friends. On the day of discharge a doctor friend  kept me company while Jonny slept, helped me pack up the room and also heard the discharge instructions. I could not have got through that day without him.

10. For caregivers:-If you do not think your loved one is ready to be discharged do not be afraid to say so, particularly if you will have the responsibility for caring for them at home. Hospitals want to discharge patients as quickly as possible to avoid infection (admirable) and to free up the room for another surgery (not so admirable). 

You know the patient better than anyone. If you do not think they are ready to come home, speak to whomever is the hospital point person you have the best relationship with (see tip no. 1) and ask them to assess the situation. 

And finally when you get home and you have your own bed and bathroom back, manage your expectations about your recovery. Be kind to yourself as patient and caregiver . You have been through an ordeal and coming home is the beginning of a new stage of recovery not the end.

All pictures taken from get well cards Jonny received

What would be your top tip for someone spending time in hospital?  Please leave a comment below to share and help others.



You may also be interested in the posts:-

Caregiving - part 1
What Does Recovery Look Like?-part 3

 Please email me at or leave a comment on this post below. I'd love to have your feedback. 

* Be aware that strong perfumes may irritate other patients due to allergies or asthma so be sensitive to others sharing your environment.

**Taken from The Johns Hopkins Website

"Trigeminal Neuralgia is an extremely painful condition usually involving one side of the face. It usually occurs spontaneously. It has a characteristic feeling of “shock-like” pain which travels through the face in a matter of seconds, but can occur in a repetitive fashion. Sometimes it is triggered by specific things ,mostly it starts and stops for no reason and an episode can last from minutes to hours at any one time.
The intensity of the pain is exceptional, and it is felt to be more severe than experiencing a heart attack, passing a kidney stone, or even having a baby. There is no other pain quite like this.

Trigeminal neuralgia can be very active for a time, and then seem to disappear, sometimes for long periods, but always recurs later, often with more intensity. We also know that the most commonly accepted theory of what causes trigeminal neuralgia is vascular compression. There are blood vessels that travel with the nerve, and if they cause pressure on the nerve or irritate it, pain can occur.
For more information  visit The Facial Pain Association website or Living With Trigeminal Neuralgia site They are excellent resources for anyone wanting to find out more about this horrendous condition.
Getting Brainstorm in your inbox every week, is simple.

Enter your email address below to subscribe and follow the prompts.

Check your spam folder for the confirmation email, if you don't see it straightaway in your in-box.  See you next week!

Enter your email address:

Delivered by FeedBurner


  1. If possible, before entering a hospital, find out the names and extension#'s of the following individuals:
    Patient Advocate
    Director of Nursing
    Nurse Manager
    Charge Nurse
    Resource Nurse

    It makes a big difference when you have a concern, complaint or just need service to have an individuals name to call from your bedside phone.

    1. Thanks Lynn -all excellent suggestions and if you have the chance to find out the information before you go into hospital, that is even better but not always possible.

  2. Dear Gilly,
    This is a wonderful list born from the school of hard knocks. Some help with the kids at home is key so one doesn’t have to worry and all are tended to. Scrabble, magazines and good music with ear phones can transport from purely physical concerns to heart and soul level.


    1. Jessie -Thanks. You make a very important point and that is a good addition to the list, if you have time to plan for it! Either way you do need to address your children's needs and care while you are gone.
      I hope it was easier to leave a message now that you don't have to try and replicate those unreadable words!
      Thank you very much for leaving a comment.


  3. hi Gilly, oh gosh this is great ideas and tips. I was rushed (sudden and unexpected) to the hosp 2 weeks ago and i didnt know that ill be confined that day already. i didnt have anyth except my phone and my charger. when my husband came from work he didnt have anyth too. just his clothes and he was wearing that for 3 days straight. I had ovarian surgery and i am just so thankful that its over now and am recovering pretty well.
    We both never been hospitalized before so we didnt know plus we didnt care anymore its like we are in a battlefield. lol.
    thanks for sharing this. Because of this I am inspired to write sth about my experience too. thanks so much!

    1. MariaAna,
      What a traumatic experience you have been through. Finding yourself in hospital without preparation is very challenging, emotionally and physically for you and your husband. I am glad you are doing better now. I know what you mean about being on a battlefield.
      I am so glad you found this post helpful and I really appreciate you retweeting the link to it. I am sure you have a lot to tell about your own story. I look forward to reading it.

      In the meantime take care and continue to recover smoothly and easily.
      have a great weekend

  4. This comment has been removed by a blog administrator.

  5. What a great list for the patients! When my husband was hospitalized for a mass in his neck, we had no idea that a caregiver COULD and SHOULD stay in the room with the patient (it was his first hospitalization). He was admitted to five different hospitals over the course of the next ten months. I've shared what I learned about hospital etiquette on my blog--not all hospitals have the same rule (spoken and unspoken)

    1. Thanks for commenting Anita.
      I think caregiving is like being a parent. You learn on the job! The silver lining is that hopefully, as a result of the experience ( however gruesome it may be) you can use it to help others avoid the pitfalls you fell into on the journey. It sounds as though you went on a roller coaster ride. How is your husband doing now?


  6. My son has cerebral palsy and has been admitted several times. We are looking at another extended stay in March for spinal fusion. One thing I would like to ad is take a power strip/surge protector for your devices. There are not many usable outlets in a hospital room. Also take healthy snacks and don't forget to get up and move around, even if it's in the room. Don't be afraid to ask what type of medication is being given to the patient. You can ask questions in a nice, non accusing way. Saline nasal spray is also a must for me. There is something about hospital that dries my sinuses.