Help for Carers
The Princess Royal Trust for Carers website includes a wide range of information for carers. I hope you will find it useful.
Carers are entitled to Carers Allowance, other benefits and help with housing costs. You may also want to know what the person you care for can claim. more...
Caring and working
You may be dealing with the stresses of what seem like two jobs... one paid and one unpaid. Help and advice is available. more...
Help with caring
You might need a break from caring or help with certain practical tasks. There is help available. more...
quote:"I feel responsible for absolutely everything. I always think I should be leading the patient to do the right thing. I feel I'm becoming such a nag."
Life can change with just one phone call. When the words "your loved one has cancer" are heard, life changes forever for the caregiver. That moment of first hearing the news will likely live on in your memory. Suddenly, life as you knew it is gone. A whole new expansive set of responsibilities appears seemingly overnight and invades every facet of daily life, as you can see from the list below.
What new responsibilities do you now have?
__Handling finances, working with insurance company, handling legal matters
__Providing for child care, meals
__Taking care of the home, often from a distance, such as paying bills, cleaning, yard, mail, etc.
__Managing family relationships
__Managing other relationships, including friends, church, etc.
__Continuing with school and work tasks
__Coming to an understanding of the meaning of your life and death issues
__Tolerating suffering while yearning for control
__Maintaining hope in the face of uncertainty
__Becoming aware of and managing anxiety, depression, sleeplessness and loneliness
__Learning new communication skills, including with the treatment team and your patient, who may be irritable
__Learning a different skill set of listening and coping skills
__Becoming organized as the record keeper, including research on disease facts
__Tracking and organizing medications
__Scheduling for tests and treatments
__Working with the medical staff, other services, and coordinating appointments and schedules
__Seeking and finding help from others
__Providing transportation to and from appointments, errands, etc.
__Receiving medical training for at-home procedures
__Keeping up a feeling of confidence
__Maintaining a sense of self-worth during a time of great demands and stress
__Establishing and maintaining an overall feeling of competence
How many did you check? Are there additional things that you do that aren't on this list? Given that there are only 24 hours in a day, this scope of things to do can feel overwhelming and at times, exhausting. How do you handle this level of stress?
As I'll continue to mention in future caregiver posts, it's vital that you keep a toe in the water of the so-called normal, healthy world. It's so important to take care of yourself, but we'll discuss that at another time.
quote:Caregivers --despite our differences --it seems there's one thing we all have in common: guilt. Well-meaning friends, doctors and strangers always tell us the same things, "Take care of yourself." It sounds like a great idea, right? But it's not always practical or realistic. We feel guilty. Everyone tells us that doing these things will make us better caregivers. But whenever we take time for ourselves, we feel guilty that we aren't doing something else. Early on in my caregiving journey lots of people told me how important it was for me to take a night off and go spend time with my friends. The problem was, when I actually did that I was so consumed with guilt and worry that it made my stress levels worse. As a fellow caregiver, I want to share some simple, real ways that helped me learn what it means to "take care of myself." I'm no expert, but I've been there, and this is what has worked for me.
- Do what works for you. If taking a break to go meet friends makes you feel guilty or makes you worry yourself sick, then don't do it. I know everyone will tell you this is something you need to do. But if it makes you feel worse, then it's not worth it.
I'm to the point now that I can go out to dinner or stop to get a pedicure every now and then and can actually relax and enjoy it. However, I can't go somewhere overnight. I would worry so much about my husband that I couldn't enjoy myself.
Figure out what you feel comfortable with and do that. If it's only a five minute walk down your street, that's OK. It's not about what you are "supposed" to do. It's about what works for you.
- Don't neglect your friendships. This one is difficult, and I got lucky in this department. I have a small group of girlfriends that have been my rock. They've stuck by me through the times when I've been at my worst. Don't have time for dinner? Take five minutes or less to check in every now and then.
- Keep yourself well. I've learned the hard way. If you let something go too long because you're too busy, it might knock you out of commission for weeks. At the first sign of an illness, I immediately call my doctor.
- Make a list. Some days, caregiving can feel so overwhelming that you feel like the weight of it is going to crush you. Every night before bed, I write a list of everything I need to get done. Then, I select the most important one. Getting everything out of my head and onto paper helps me sleep. By choosing just one thing that absolutely must be accomplished the next day, I can focus on what's most important and not be overwhelmed.
- Prioritize. Not on your to-do list, but in life. Then every decision you make will be much easier. When it's time to make a decision, instead of freaking out about it, I try to think about it in terms of top priority. Then, the answer usually becomes clear.
- Trust your medical team. When you are responsible for decision-making, it is so important to trust your doctors and medical team. I trust my husband's neurosurgeon, Jeffrey Weinberg, M.D., completely. If there's ever been a question of what to do, I always go with his opinion. I know he is brilliant and caring. Knowing we're in good hands gives me peace.
- Use the Internet cautiously. The Internet is wonderful. You can find awesome research studies on treatments and technology, as well as blogs and chat rooms about almost anything. I do an Internet search for anything we ever consider for my husband's treatment.
However, the Internet can't examine your loved one. It didn't go to medical school, and it can't talk to you. Use it to find information and educate yourself, but you ultimately need to rely on the experts.
- Learn all you can about your loved one's diagnosis. I ask a lot of questions, and the doctors always answer and are very patient with me. But when they answer, listen. Write down what they say. Keep a notebook with you all the time. You won't remember later, and they will appreciate you valuing their time by not asking the same questions multiple times.
- Let go of regret. After you've made a decision, don't look back. When I start to second-guess myself, I just say: "I made the best decision I could with the information I had." Then move on. There is absolutely nothing you can do about it now. Focus on the present -- not what might have been different.
- Do the best you can. On the days when I am just trying to keep my head above water and I feel like panicking, I've learned to say to myself, "You are doing the best you can." I know it's not the most inspirational or powerful thing, but it calms me. If you are trying your hardest and doing everything you can, then what more can you ask for?
You are strong in spite of your weaknesses, and you can do this. You can keep going. You can learn from what you are going through and be a better person for it tomorrow.