What is a caregiver?
A caregiver is a person who has the main responsibility of caring for someone else, specifically in the home. A caregiver is usually a spouse, partner, son, adult child, or parent, but can also be a friend or neighbor.
Without even realizing it, you may already be the main caregiver for your loved one. But you don’t have to do this alone. What are your options? What resources are available to you?
One such resource is the Alpha-1 Peer Guide program. The progam connects a newly diagnosed Alpha, or someone whose life has been affected by Alpha-1, to another Alpha with a similar set of circumstances. Through this connection, the Peer has the opportunity to discuss difficulties and issues he/she is experiencing with someone who has already experienced these same issues.
Another resource available for parents of young children affected by Alpha-1 is the Alpha-1 Kids program, which is dedicated to providing support, education & information for parents and families. Many parents in the program also participate as peer guides.
Information & Resources
- Forming partnerships
- The challenges of giving care
- What you can do to help
- Signs of burnout and how to deal with it
- Relationships/Couples
- References and resources
Alpha-1 most commonly presents as lung disease. It can also present as liver disease and, less comomnly, as a skin disorder called Panniculitis. It is important for the caregiver to recognize the symptoms before they can determine how best to help their Alpha(s).
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.
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 what help is needed. What are they able to do on their own? What will your responsibilities be? Does the Alpha require minimal, moderate or maximal care? Don’t allow yourself to take over any care that the Alpha can do for themselves. It’s important to do everything both of you reasonably can – to maintain the Alpha’s independence as well as your own.
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. Create a document or binder with a list of what medications this person is taking, the purpose of the medicine and any side effects, any special treatments or diet.
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. 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.
These are some of the challenges of caregiving:
- 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, these are just some of the attributes necessary in providing home care.
*Adapted from The Comfort of Home for Chronic Lung Disease. See Resources at bottom.
You need to be honest with yourself. If the Alpha is a family member, you don’t want to end up resenting them 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:
- Lack of freedom, lack of time for hobbies, interference with careers.
- Less time for friends or other family members.
- The Alpha may become critical and take out their frustrations on the caregiver.
- Other family members may criticize efforts and give unwelcome advice instead of help.
- Not getting enough sleep and often being tired. Is there a backup plan if the caregiver gets sick or needs to go out of town?
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, they may need help with daily activities such as preparing medications or helping with a shower or bath. Eventually, they may require total care. At this level of care, a nursing home or outside help in the home may be necessary.
- 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
You and others close to you need to recognize when you are overwhelmed.
Reemind yourself every day that you are making a difference by helping the person in your care because feelings you’re not doing enough can be difficult.
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 guilt, and the others understand. If you have a religious affiliation, talk to the clergy. Many caregivers say 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
- Always have a list of the Alpha’s medications and known allergies with you.
- Learn how to do breathing/relaxation exercises
- Create 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)
- choking
- chest or abdominal pain
- falls/fainting
- disorientation or confusion
- loss of electricity and/or oxygen supply
If you are a couple, you need to maintain intimacy. You can still maintain a sexual relationship with cuddling, hugging and kissing. Don’t plan for sex after a full meal or when fatigued. Think of the best time of day when he or she has more energy and enough time.
Learn more about relationships and chronic illness
- AlphaNet’s Big Fat Reference Guide – section on physical intimacy
- 2017 National Conference presentation by Deborah Fending RN, BSN, AE-C
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 during a critical time.
Learn more: 2017 National Conference presetation on End of Life Choices by Teresa Kitchen, RN, BSN
- Alpha-1 Lung Disease
- Alpha-1 Liver Disease
- Caregivers Virtual Support Group
- Support for parents of young children (Alpha-1 Kids)
- Alpha-1 publications
- The Care Action Network (CAN) 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 CAN caregiver resource center provides a wealth of resources to support you as a caregiver.
- National Alliance for Caregiving
- Eldercare locator
- The Comfort of Home for Chronic Lung Disease, Meyer M, Derr P, with Gilmartin M, Care Trust Publications LLC, 2008
Caregiving Presentations
If you have specific questions about being a caregiver or to get connected with a Peer Guide, contact Cathey Henderson, Director of Community Outreach, at (877) 346-3212 or chenderson@alpha1.org.
