What is a caregiver?
A caregiver is a person who has the main responsibility of caring for a someone else, specifically in the home. A caregiver must be willing to give up some independence and privacy in order to take on the role of caregiver. A caregiver is usually a spouse, partner, son, adult child, or parent, but can also be a friend or neighbor.
Are you able to be the caregiver?
Without even realizing it, you may already be the main caregiver for your loved one. However, as an illness progresses, you may be required to do more. Your loved one may need help with cooking, cleaning or doing errands. They may not be taking their medications appropriately or getting prescriptions filled; they may not be able to bathe themselves. If their ability to perform daily activities decreases, this adds to your workload.
A key question to ask yourself: are you able to do this? Not everyone can be a caregiver — especially if you have to provide more intimate personal care. You don’t want to act out of guilt. If you can afford it, you should consider hiring someone to help. (See “What it takes,” below.)
Form a partnership
In families affected by Alpha-1, the most common situation is for an Alpha with lung disease to be short of breath and unable to do things most of us take for granted: walking up stairs, carrying groceries, cleaning the house. (The basic guidelines are the same for an Alpha affected by liver disease – or anyone who is sick and needs care.)
It’s important to discuss this openly, in conversations between the caregiver and the Alpha who needs the care. Take time to sit down and discuss the help he needs. (To keep it simple, we’ll use “he” for the Alpha through this web page; but the same things are true whether the Alpha is a man, woman or child.)
What is he able to do on his own? What will your responsibilities be?
Does he require minimal, moderate or maximal care? (If the disease progresses, you will need to provide more care.) Don’t allow yourself to take over any care that the Alpha can do for himself. It’s important to do everything both of you reasonably can – to maintain the Alpha’s independence as well as your own.
Are other family members needed to help with some of the care or to provide some respite for you? Ask. You too, must ask for the help you need.
You also need to understand the Alpha’s disease and how it affects daily life. See the resources at the bottom of this page for detailed information about Alpha-1. Meet with the Alpha’s doctor or other healthcare team members to discuss both immediate concerns and long-term issues. Know what medications this person is taking, the purpose of the medicine and any side effects, any special treatments or diet.
What it takes to be a successful caregiver
Being a caregiver is not for the faint of heart. Here is a description of a caregiver who is just about ideal:*
- emotionally and physically capable of doing the work
- able to share responsibilities with family members or friends
- able to plan solutions and solve problems, instead of withdrawing under stress
- able to speak simply and clearly
- able to understand the person you’re caring for
- comfortable giving and receiving help
- trained enough for the level of care needed
- able to handle unpleasant tasks, such as bathing or toileting
- in good health, with the energy, skill and ability to adapt
- able to cope with anger and frustration
- able to allow the sick person to feel useful and needed
- valued by other family members
- able to adjust to the future needs and wishes of the person you care for
- aware of other care options and willing to explore them
- able to afford help when you need rest and relaxation, or backup care when necessary
Keep in mind that no one is the ideal person described above. Even so, if you have most of these attributes, you will probably be successful in providing home care.
(*adapted from The Comfort of Home for Chronic Lung Disease. See Resources at bottom.)
The challenges of giving care
You need to be honest with yourself.If the Alpha is a family member, you don’t want to end up resenting him and being angry. Neither you, nor anyone around you is a perfect person. Sometimes everyone in your life seems ungrateful, and sometimes you may feel you are giving up your own life to care for someone else’s. Some of the challenges you may face:
Your lack of freedom, lack of time for hobbies, interference with your career.
Less time for friends or other family members.
The Alpha you love may criticize you and take out their frustrations on you.
Other family members may criticize your efforts and give unwelcome advice instead of help.
You may not get enough sleep and often be tired. Do you have a backup plan if you get sick or need to go out of town?
The possible stages of care
In the early stages of the disease, an Alpha may only require minimal care such as cooking, shopping, chores, and going to the doctor. If the disease progresses, he may need help with daily activities such as preparing medications or helping with a shower or bath. Eventually, he may require total care. At this level of care, a nursing home or outside help in the home is necessary.
After an Alpha is hospitalized for an exacerbation or pneumonia, his care needs will most likely increase when he gets home until he gets stronger.
Ask the doctor about pulmonary rehabilitation. If an Alpha has not done rehab in the past, it’s best to ask the doctor to prescribe a formal rehab program. They will train him in the safest and appropriate type of exercise, monitor his oxygen saturation and if necessary provide the correct flow of oxygen for his exercise needs.
Pulmonary rehab has a long range of benefits. It increases stamina, decreases shortness of breath, and improves overall wellbeing. Physical activity improves the mind – both memory and mental functioning. Attending a rehab program gets the Alpha out of the house and allows him to have more social life, including some interaction with other people with lung disease.
Many rehab centers can provide longer term rehab for a small fee after the initial evaluation and training is finished. You should attend some of the sessions to get a good understanding of the exercise program. Learning breathing techniques is very important for continued care at home. When anyone with lung disease gets short of breath, they get anxious – and it’s very helpful for the caregiver to be able to coach him through episode.
If a lung or liver transplant is needed
If he is a candidate for a lung or liver transplant, you need to learn everything you can about the process. Know what the evaluation entails and what it means to get on the waiting list. (The process takes time, and it isn’t easy.) After someone is on a transplant list, life is still an adventure. There may be times the Alpha will get called in to the transplant hospital – only to be sent home because the donor lung wasn’t viable, or some other complication. These are stressful situations for both of you. Finally, when he has the transplant, you will both be staying near the hospital for some time – and then making frequent visits to the hospital for evaluations.
Understanding all of the medications and treatments after transplant can be mind boggling. After an organ transplant, the patient must be given medications that weaken the immune system, so both of you need to be more cautious than ever about preventing infections. Anyone who has a cold or an infection must stay away from a person who’s had a transplant. Keep antibacterial wipes or lotion on hand and use them freely to clean off any surface you’re concerned about.
Common fears of the person with lung disease
- Loss of breath: It is very difficult for those of us who don’t have a breathing problem to understand the fear, anxiety and loss of control when someone is severely short of breath.
- Loss of self image
- Loss of control over life
- Loss of independence and fear of abandonment
- Fear of dying
What you can do to help:
- Focus on the person’s strengths and on small successes
- Give them choices to help restore independence
- Keep your sense of humor. Humor is healing and can stimulate a positive attitude
- Allow the person to express emotions such as sadness or anger
- Provide opportunities for peer support and friendships
- Provide new ways for the person to adjust to limitations
Signs of burnout and how to deal with it
You and others close to you need to recognize when you are overwhelmed.
If you’re a perfectionist, you’ll never be satisfied with the job your doing. Feelings of guilt can be
crippling; you need to remind yourself every day that you are making a difference by helping the person in your care.
Watch for signs of depression: feelings of hopelessness, sadness, constant anxiety; loss of interest or pleasure in things you used to enjoy; feeling tired all the time, difficulty concentrating; insomnia, restlessness, irritability; changes in appetite and weight, thoughts of death.
If any of these symptoms persist for several weeks, seek help. If you are getting angry easily, you don’t want to take it out on the person in your care but you also don’t want to hold it inside.
Some things you can do:
Find a caregiver support group where you can express your feelings without feeling guilty, and the others understand. If you have a religious affiliation, talk to the clergy. Many caregivers say is that no one asks how they are doing or tells them what a great job they have done. Keep a journal of your feelings. Keep up with outside friends, and make sure family and friends know that you may need help. Allow yourself to cry and realize your own limitations and accept them.
Separate the illness from the person. The illness is responsible for challenges both of you are facing. The person in your care has trouble dealing with their loss of control, and may try to control you.
If your anger is getting the best of you, pull away from the situation, take a walk or go to another room and pound a pillow. If you have exercise equipment at home, get on the bike or treadmill.
List priorities; not everything needs to get done. Set and enforce limits on how many non-essential tasks you will do. Set aside time for prayer or reflection, learn to meditate or practice relaxation techniques.
Helpful ideas for success
Always have a list of medications and known allergies with you
Know how to do breathing exercises
Have a schedule and a care plan
Delegate responsibilities — to family members, your Alpha himself, or to anyone available to help
Make decisions about what has to be done daily and what can be put off until later
Cook multiple meals at once and put in freezer
Be prepared for emergencies
- severe shortness of breath
- acute exacerbations (worsening of disease)
- chest pain
- loss of electricity and/or oxygen supply
Issues between couples
If you are a couple, you need to maintain intimacy, even if you can’t have a sexual relationship. You can still cuddle, hug and kiss. Know what positions during sex make it easier for the person with lung disease. Don’t lie directly on top of your partner’s chest; this makes breathing more difficult. Lying side by side allows for easier breathing. If using oxygen, adjust the flow rate as you would during exercise. Have your partner pretreat with a quick acting bronchodilator and have the bronchodilator nearby in case of shortness of breath. Don’t plan for sex after a full meal or when fatigued. Think of the best time of day when he has more energy, less mucus and enough time.
Talk about end of life decisions. This is not easy to do, but it’s best to do this early on. You don’t want to be making these decisions when he is in intensive care and may require artificial ventilation.
Caregiver, take care of yourself!
If you are a caregiver, you need to take care of yourself first. If you don’t, you will suffer from neglecting yourself, and inevitably your relationship with your loved one will suffer, and so will the quality of the care you give.
References and resources
The Comfort of Home for Chronic Lung Disease, Meyer M, Derr P, with Gilmartin M, Care Trust Publications LLC, 2008
Eldercare locator: www.eldercare.gov
Family Care 101: http://www.caregiving.org
Living with Advanced Lung Disease: A Guide for Family Caregivers by the Washington Home Center for Palliative Care Studies. A Division of Rand Corp., November, 2002
- Our publications
- Alpha-1 lung disease
- Alpha-1 liver disease
- Caregivers support group
- Caregivers Website
- The National Family Caregivers Association (NFCA) educates, supports and empowers individuals who care for a loved one with an illness or disability. From tips and how-to guides, to a story bank and pen pal program, the NFCA caregiver resource center provides a wealth of resources to support you as a caregiver.