Cargiver Resources and Hints

Ten Tips for Family Caregivers -

• Educate yourself about your loved one's condition. Information is empowering
• Watch out for signs of depression, and don't delay in getting professional help when you need it.
• Trust your instincts. Most of the time they'll lead you in the right direction.
• Choose to take charge of your life, and don't let your loved one's illness or disabilty always take center stage.
• Remember to be good to yourself.  Love, honor and value yourself.  You're doing a very hard job and deserve some quality time, just for you.
• Stand up for your rights as a caregiver and citizen
• Grieve for your losses, and then allow yourself to dream a new dream.
• When people do offer to help, accept the offer and suggest specific things that they can do.
• Seek support from other caregivers. There is strength in knowing you are not alone.

Source : John Hopkins Health Information: Caregivers

Five Ideas and tips to help you and your family:

1. It's okay not to know what to do - Information and education can give you back some measure of control.  Your role, hopefully, is to provide back-up for your partner. When he or she is scared, you ask the questions. When he or she is confused and tired, you step in and handle the details. Sometimes you need to be close, sometimes you need to give your partner space.  You don't always need to give advice.  In fact, it's seldom called for. You must try to get over the natural desire to "fix it" and settle for providing attention and understanding.  That's a lot.  When in doubt about what's needed or wanted, ask.
2. Maintaining a Positive, Open Attitude - To overcome the hurdles your partner is facing, you both need to a positive attitude.  Honest communication is important. He or she might feel anger, regreat, sadness, resentment, hope, happiness and gratitude - all in one day. You can't always help control your partner's feelings, but you can help by providing understanding and positive reinforcement.
3. Anger and resentment often mask fear and disappointment - Give compassion and ask for it.  It's a shared stress and you're all feeling its effects.
4. Medication and Side-Effects - It's very important that you do whatever you can to ensure that your loved one is taking his or her medication. You want to both be aware of what each medication is doing.  You need to know how important each and every medication is.  It's also helpful to know there could be possible side effects.

For the Potential Transplant Recipient - Being a Caregiver to your Family

1. Make sure life goes on  - Keep things as close to routine and normal as you can and don't feel bad if that's impossible.  A serious conversation about plans of action can help. Don't surprise your children about upcoming plans when you can avoid it.  Let them know who will stay with them while you're spending time away.  Information allows them to feel in control too.
2. Things a Family can do:
1. Help your children find things to do that help. Let  them address and stamp postcards to themselves and put them in your suitcase. 
2. Try to help them find a balance between helping around the house and having a life. If one of them likes to write, let him or her record the events or keep a diary.  If one like to draw, have him or her keep a scrapbook/picture book. If one likes to build, let him or her design and make a mobile for your bedside. Help  your children find what they can do to help themselves and you.
3. Try to involve the whole family in writing a letter to the donor family.
4. Keep your friends informed - Ask for help. And let people give it.

Source: New Horizons

Avoiding Caregiver Stress:

There are many positive elements of the caregiver role. But also associated with high stress and the development of their own health problems.  In general, the more sever the recipient's illness, the emotional impact will be greater.  Then too, the suddeness of the onset of health problems can give significant repercussions on the health and well- being of the caregiver since family members often feel over whelmed by the burdens of providing sudden and intense care. Also, the more roles the caregiver has both within and outside the family, the more likely it is that the caregiver will face difficulties.

• EAT WELL  - Take the time to make and enjoy good meals that are good for both you andthe transplant recipient.
• EXERCISE DAILY - Exercise can be squeezed into your daily routine even if your housebound in order to provide care for someone else.  Simple calisthentics, lifting hand weights, jumping rope or even walking up and down your own flight of stairs, increasing the repetitions and speed as time goes on, can all help to keep your body fit.
• TALK TO A FRIEND - The opportunity to confide in another person is priceless.  Share sorrows to "halve" them and joys to "double" them.   Often caregivers keep in touch with each other long after their family members are discharged from the hospital after transplant.
• INDULGE YOURSELF - Taking a hot bath, reading a good book, working on a hobby and petting the dog or cat can all contribute to your well being.
• KEEP A JOURNAL - Record thoughts and feelings and "sharing" them in a private and confidential way in a journal is a proven benefit.
• PRAY OR MEDITATE - Don't lose sight of the importance of feeding your spiritual self.
• EDUCATE YOURSELF - Knowledge about the transplant and recovery process is crucial to feeling and being useful as a caregiver.  When you feel unsure of a question you are asked, let the recipient know that you will do everything to find the answer. Ask the professionals, and don't be afraid to ask again if you don't understand. Seek advice from other experienced caregivers and transplant recipients.  Read any articles and medical literature that you can find.
• TAKE A BREAK - A real vacation taken periodically often provides the best boost for your own well- being.  However that is not always practical. More realistic "mini-vacations" are.  This can be as simple as  weekend or even a day away from home visiting a friend, a relative, or some interesting location.  The break in routine responsibilities can refresh the caregiver and enable them to return renewed.

Source: Stadtlanders

Laughter as Theapy

Laughter can be a powerful therapy for both patient and caregiver.   The benefits of laughter effect the mind, body and spirit.  The patient's emotional responses all can effect compliance to treatment and ability to cope with fear. Laughter and humor can create a positive and hopeful attitude.  We are less likley to succumb to feelings of depression and helplessness if we are able to laugh at what is troubling us.  Caregivers as well as patients benefit from laugh therapy. Caregivers are also at risk physically to  exhaustion from long shifts with inadequate staffing, exposure to infectious organisms.

Norman Cousins, the former editor of Saturday Review was diagnosed in 1964 with ankylosing spondylitis, a progressive degenerative disease of the collegen tissue.  His doctors gave him little hope for recovery, indicating that a possible cause of his illness was due to heavy-metal poisoning.  Norman suspected that positive attitudes might create changes within his body which would enhance his recovery. Norman began viewing amusing films to stimulate laughter.  After each laughing episode he noted that he could sleep more soundly without sedation. 

With vigorous laughter, the heart rate is stimulated, sometimes reaching rates of above 120bpm, the normal respiratory pattern becomes chaotic; respiratory rate and depth are increased while residual volume is decreased.  Oxygen saturation of peripheral blood does not significantly change during the increased ventilation occurring with laughter.

So how is humor and laughter good for patient and caregiver?  Laughter is a pleasurable experience, it momentarily banishes feelings of anger and fear.  It gives us a feeling of power an control; we feel carefree, lighthearted and hopeful during the moments of laughter. Illness, either chronic or acute can be stressful.  Hospitalization, separation from family, invasive procedures, complex technology, or unfamiliar caregivers can all create anxiety, loneliness, discomfort, anger, panic, and depression for the patient.  These emotions are known to produce physiological changes that are harmful to the body; changes which the use of humor and laughter can ease.  Shared laughter is a uniquely human bond and serves as an equalizer and "social lubricant".

Hints for the Caregiver

Recovery - The patient needs to approach the immediate time after surgery with the attitude that others will look to your needs.  Let them know how you are.  If you cannot talk, write your message on a notepad. The caregiver - during this time, it is not uncommon for some transplant recipients to have dreams while they are half awake.  If this occurs, let the staff know.    The patient - At times, you and your doctor or nurse may disagree about how active is best for you. Try to accept their guidelines, they have much experience with this.

Family and Friends - Quiet companionship for a short tme is often the best approach when visiting an organ recipient. Follow the recipient's lead. Time and time again, support people underestimate the value of "just being there."

Caregiver, Family and Friends - Touching can be a comfort.  It can be very reassuring just to hold the recipient's hand for a few moments, or for however long they like.  This will communicate your caring, sometimes better than talking does.  A warm touch will be remembered by even a confused patient.  Even if the recipient appears to be asleep, it is a good rule to not say anything that you would prefer they didn't hear.  As a rule, you can calmly reassure a confused recipient that he or she is safe.  Periodically remind them of the day and the fact they are in the hospital.  Place a few familiar objects in the room to help orient them.  These could a a photograph, an art object, a clock etc.  Sometimes the confused recipient can misinterpret the activities of the nursing and doctor staff. They may look frightened or tell you that the staff are trying to harm them.  If this occurs, notify the nurses immediately.  Reassure the patient that they are safe in the hospital.