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Caregiver Information 

The Hospital Stay:

Pre-Surgery

Depending on the distance between your home and the hospital, you may want to consider staying in a hotel or bed and breakfast for the day of surgery and possibly a few days after. The hospital may have a list of nearby accommodations. This can act as a “home-base” for family and friends who may need a break from the hospital, a place to call for updates (cell phones may not be permitted in the hospital), and a place for children to play.

If you are the parent of the patient, most hospitals will strongly encourage you to stay in the child’s room once he or she is on a regular floor. Immediately after surgery, while the child is in ICU, you may want to stay in a local Ronald McDonald House. These houses are very inexpensive and quite comfortable.

If the patient will need to change anti-seizure medications before the surgery in order to use an anti-seizure medication that is available in IV form, the patient may be admitted the day before surgery. If this is not an issue and they do not require pre-admission, a patient may still have a mapping MRI the day prior to surgery; this means parts of the patient's head will be shaved and sensors will be glued to their head. This may not be the most flattering hairdo so you may want to order-in the patient’s favorite dinner the night before instead of going out.

The hospital will require the patient to stop eating and drinking at a specific time before surgery. This is very important; patients frequently vomit because of anesthesia and this can happen while they are intubated. This creates a real problem if there is liquid or solid in the patient’s stomach. Also, don’t forget to have the patient remove ALL jewelry prior to leaving home, due to MRI s and surgical requirements.

Day of Surgery

Most hospitals will have a separate waiting-area for family and friends while the patient is in surgery. A family member should keep post in this area at all times or leave a phone number with the receptionist. Usually, the surgeon or staff will call the waiting room with updates on how the surgery is progressing. After surgery, the surgeon or staff may come to the waiting area to update family on details of surgery while the patient is being “closed” and prepared for recovery. Keep in mind, if a surgeon says “…surgery should be approximately 4-5 hours…” this does not include at least 1-2 hours pre-operation anesthesia and preparation for surgery, and at least 1-2 hours post-operation close and preparation for coming out of anesthesia and any glitches that may present themselves as the patient regains consciousness. The hospital staff will inform you when and where you will be able to see the patient following post-operation procedures.

Intensive Care Unit (ICU) or NICU (Neuro-Intensive Care Unit)

If the patient is transferred to ICU or Neuro ICU following surgery, they will receive more one-on-one care than a regular floor can provide. Don’t be alarmed; this is common following brain surgery. Patients in ICU will usually have lots of monitoring equipment attached to them. This equipment allows the nurses/doctors to monitor the patient at all times including heart rate, respiration, temperature, medication dosage, etc. This monitoring equipment will have alarms that sound for many reasons including sensors falling off, medication doses getting low, etc., etc. Try not to panic as long as the patient seems fine; just let the nurse know what is going on. If it is urgent, staff will ask you to leave the area---be respectful and follow this request. A staff member will find you in the waiting area and explain themselves once calm is restored.

There is a possibility the patient may be intubated (a machine is helping them breath) and this means the patient will not be able to talk to you. Again, try not to panic - the patient will be uncomfortable with this procedure most likely - your job is to reassure them that everything is great! Hopefully, the patient will be able to write to communicate with you. If not, ask the nurses - they may have a board with common words, emotions and symbols that the patient can point at to communicate their needs (or you can make your own).

Take advantage of posted visitation times and be respectful of the ICU rules. Usually, in ICU, visitors are limited only to immediate family, and children may not be allowed regardless of relationship to the patient. Also, visitation may be allowed only for short intervals at a time. For children in pediatric ICU, parents may be allowed to stay all day aside from nursing shift changes, but may be asked to leave at night. Some children’s hospitals have very basic sleep rooms for a parent whose child is in ICU.

Regular Floor

Once the patient is sent to a regular hospital floor they may or may not have a private room anymore. Hopefully, they will have little or no monitoring equipment attached to them so they may be able to get out of bed and walk around if they are able. Nurses will still be checking vital signs and administering medication (if needed) every few hours. If applicable, therapists may begin to start to work with patient on rehabilitation including physical, occupational and speech therapy.

On the regular floors, visitors can usually stay with the patient as long as it is during “Visiting Hours,” and visitors can include anyone except maybe small children (due to spread of germs). If the patient feels more comfortable with your staying with them overnight, you may ask your nurse if this is possible (rules normally limit this request to 1 adult only-NO KIDS). At this point you can bring items from home to make the patient more comfortable, send flowers, bring food, etc.

Medication

Certain medications may cause strange behavior and/or side-effects including aggressive behavior, confusion, hallucinations, and extreme hot and cold flashes. It may be scary for family and friends not knowing if the behavior is related to the surgery or to medications. Talk to the patient’s doctor if you are concerned about any strange behavior; hopefully, they can explain if this is a normal side-effect of medication.

If you notice hives, other rash, swelling or trouble breathing, tell a nurse or doctor immediately.

Rehabilitation Hospital

In some cases the patient may be transferred from the Hospital to an Inpatient Rehabilitation Program (aka Rehabilitation Hospital). The patient will receive intensive therapy while still remaining in a hospital setting. Nurses and doctors will attend to the patient’s medical needs including checking vital signs and administering medications (if needed). The patient will probably have therapy sessions most of the day so visiting may only be appropriate in the evenings. It may be hard for family and friends to participate in therapy at this time but it is appropriate to talk to the therapists about how you can help.

The Rehabilitation Hospital staff will probably help the family to prepare for the patient’s return home including talking to you about any modification you may need to make at home (see Preparing Home Environment) and working with the patient’s health insurance provider to determine what items for home are covered.

Medical Students/Staff

If the patient’s surgery is at a teaching hospital (like a University Hospital), there may be students coming into the patient’s room and looking over the charts. This may be obtrusive to family and friends, especially if the patient is in critical condition. Don’t be afraid to tell the nurse or doctor that this is bothering you.

Also, if anyone who is not designated “hospital staff” enters the patient’s room, do not be afraid to ask who they are and what they are doing and notify someone immediately. Advise a nurse or doctor if you or the patient are uncomfortable with a staff member’s care of your family member; do not hesitate if a preference of staff (e.g., male nurse vs. female nurse) makes a difference. Keep track of complaints: to whom, date, time, and specifics; we want the best for our loved ones and so do the healthcare professionals.

Advocacy

You may have to act as an advocate for the patient especially if they are highly medicated, intubated (a machine is helping them breath), or just not able to speak up for themselves. Make sure you ask questions and speak up if something doesn’t seem right. You know the patient better than the nurses or doctors so let them know what you observe.

Also, due to patient privacy regulations doctors and nurses may be limited to what they can tell you (even the patient’s spouse). If you know ahead of time that surgery is scheduled, it is important to have the patient visit an attorney to draw up a health care power of attorney so that the primary caregiver can make medical decisions for the patient if the patient becomes unable to do this for themselves.

Preparing The Home Environment:

Some of the most common symptoms following surgery may include fatigue, balance problems, vertigo, double vision and light and noise sensitivities; however, each person’s recovery/symptoms are unique. Depending on what the symptoms are and the severity of the symptoms, below are some suggestions to consider to make the home recovery environment as accommodating as possible:

Stimulation

You may need to keep stimulation to a minimum following surgery; this may include light, noise and movement. Look for clues (frustration, irritability, fatigue) that the patient might be over-stimulated and adjust the environment accordingly (turn off TV/radio, dim lights/close blinds and keep disruptions to a minimum). The brain is recovering from a trauma and needs rest from processing information. Once the patient seems ready, slowly add more stimulation. Also, remember everyone has good and bad days so take cues from the patient and adjust accordingly.

Visitors

Family and friends will be worried about the patient and will want to visit. It takes a lot of energy to entertain so, as the primary caregiver, consider if the patient is ready or not. Ask yourself “will visitors be beneficial to the patient’s recovery at this time?” If not, say “NO”! There are other ways family/friends can help (e.g. bring food, take care of children, clean house, etc). If you do allow visitors, it may be a good idea to give them a time limit at first to monitor how the patient responds. Visitors can be very positive to the recovery process when the patient is ready.

Sleep

The patient may have a great deal of difficulty sleeping at night. Both the experience of hospitalization in which they are checked every few hours through the night and the brain trauma itself can lead to disruption of the sleep-wake cycle. One thing that you can do to help restore the cycle is to keep the patient in natural light as much as possible. This includes keeping the environment as dark as possible during evening hours. Evening darkness encourages the production of melatonin, the body’s natural sleep regulating chemical.

Physical Obstacles

The patient may have balance, vision and/or motor skill problems following surgery so standing, walking and getting up and down may be a challenge. Also, the patient may be using some kind of assistance such as a wheelchair, walker or cane. Below are some physical modifications to your home you may need to consider:

a. If your home has more than one floor and the patient is not able to climb or go down stairs, you will need to adapt to single story living. For example, this may mean renting a small refrigerator for a bedroom or placing a bed in a living room.

 

b. Move or remove furniture from necessary rooms that may make walking difficult. Eliminate clutter furniture (foot stools, coffee tables, end tables, etc) to allow for more OPEN rooms.

c. Keep floors clear of small obstacles that patient could trip over including toys, small rugs, plants, etc.

d. Have hand-rails on stairs (both sides is preferable).

e. Add grab bars for the tub, shower and toilets. If this is not possible, a raised portable toilet chair can be used both for toileting and as a seat for bathing.

f. Make sure walk-ways are wide enough for a walker or wheelchair and purchase ramps (if necessary).

g. Purchase a foam wedge or use pillows to elevate the head of the bed (this helps to keep the swelling down).

g. Purchase a good rubber insulated ice bag with a screw on lid in case patient experiences hot flashes or the incision needs icing.

 

Therapy:

Depending on the individual deficits and also healthcare coverage, each patient may be referred to different levels of therapy including, but not limited to, an inpatient therapy program (see Rehabilitation Hospital above), in-home therapy services, outpatient therapy services or no therapy at all. Also, the patient may be referred to different types of therapy including, but not limited to, physical, occupational, balance, speech and psychotherapy.

A caregiver’s participation in therapy depends on your relationship with the patient. Do you think it would help if you gave the patient a little push to do exercises, walk, get out of bed, etc? Or will this cause fighting and tension between you and the patient? If pushing causes too much stress for you or the patient then it may be best to leave this to the therapist. Also, there are lots of things you can do for the patient that are both therapeutic and fun, for example play cards, a board game, read/play with children, go for a walk, etc. Just make sure the task matches the patient’s level of recovery. Also, ask the patient’s therapist how they think you can best help with the therapy process.

Emotional Support:

This may be a difficult time not just for the patient but also for the caregivers, family and friends of the patient. It is not easy to see a loved one in pain, left with deficits or just not themselves. Try to be as patient and supportive as possible and also remember to take care of yourself so you can be physically and mentally able to take care of the patient (and family). Also, you may be taking on additional responsibility that the patient can’t do themselves such as taking care of the house, kids, animals, bills and the patient too. This can all be overwhelming so whenever possible ask for help!

Also, talking to others about what you are going through can help tremendously so don’t forget to talk to family, friends and your support system at Angioma Alliance.

 

Update 2014.9.Oct