Pumping Marvellous has recently just won significant funding for a pilot of its Heart Failure Toolkit that will help Heart Failure patients and their carers and families with managing this long term condition.
If you know what a Bounty Pack is then visualise this as a concept if you don’t put Bounty Pack into Google and you will find out about it. Pumping Marvellous has developed a Heart Failure Toolkit which will help Heart Failure patients along with their carers and families to manage this long term condition. It is a lifelong toolkit for self-management.
We would like to have your thoughts and have therefore put the project out for consultation. We would like you to tell us what you think should go into this toolkit, what you would expect to see in this toolkit if you were a newly diagnosed patient, a carer or member of the family.
All feedback and recommendations are well received and hopefully we can pull as comprehensive a pack together and make a real difference to patients and the way they manage their Heart Failure in the community.
1,000,000 people in the UK suffer from Heart Failure and over 6,000,000 in the US. You may know one and if you do give some thought to some feedback that could make a real difference.
Thanks for considering this, the Trustees.
Carers 12 Days of Christmas Special – Day 11
Get out once a week and go somewhere enjoyable. Visit the local coffee shop, take a class, visit a friend or just wander around doing some shopping or a stroll park. If your loved one needs constant attention, ask for help. You can find someone to give an hour a week to let you get out.
Carers 12 Days of Christmas Special – Day 10
Stay connected with the outside world, even if it’s just by phone or online. Don’t isolate yourself. Talk to friends about something other than your situation. Stay interested in what would be going on in your life if you weren’t carer. It’s still there and you’re still a part of it.
Carers 12 Days of Christmas Special – Day 7
As a carer, you need to communicate with many people to keep going. You’ve got to connect with family, friends, co-workers, employers, healthcare professionals, insurance companies and a loved one who may not be the same person he or she used to be. Constructive and effective communication is vital. When your communication is clear, assertive and constructive, you’re more likely to be heard and get the response you need. Your stress level and the added responsibilities are going to make it harder to stay focused, articulate your needs and feelings and make sure you understand what everyone is demanding from you. You’ll need to stay organized, have patience and control conflicting emotions. Here are some basic guidelines for good communication.
General Communication Tips
- Be assertive, honest and patient. You’ve got a long road ahead. You need support from your loved one and those who will be on your team.
- Use “I” messages rather than “you” messages. By saying “I feel angry” rather than “You made me angry,” you can express your feelings without blaming others or causing them to become defensive.
- Respect the rights and feelings of others. Don’t say something that will violate another person’s rights or intentionally hurt the person’s feelings. Recognise that the other person has the right to express feelings.
- Be clear and specific. Speak directly to the person. Don’t hint or hope the person will guess what you need. People are not mind readers. When you speak directly about what you need or feel, you take the risk that the other person might disagree or say no to your request, but your action also shows respect for the other person’s opinion. When both parties speak directly, the chances of reaching understanding are greater. Be a good listener. Listening is the most important aspect of communication.
- If at first you don’t succeed, try and try again. If you’re not getting your point across, or you’re getting no response, try again later. Sometimes, it’s just not the right time.
Communicating With Your Loved One
It can be frustrating, sad and frightening. Even if your loved one can express himself or herself, there may be some type of role reversal involved when you become a caregiver. Print out these tips and add them to your notes to read over when you get frustrated.
Communicating With Your Family
The illness and dependency of a loved one can strain family relationships. Additional stress may result as family members sacrifice time and money as a result of caregiving. Emotions may run high when everyone is frightened and concerned about the situation, and nerves may be on edge. Roles may be reversed. The best intentions of families can sometimes lead to misunderstandings, resentment and fear. Start the process of good communication by holding a family meeting. Then minimize misunderstandings by keeping communication with family members open, honest and constructive.
Communicating With Healthcare Professionals
The relationship you build with the healthcare professionals caring for your loved one can make a big difference in your loved one’s recovery and in your ability to understand what you can and can’t control about the situation. It’s very important for you to build and nurture this relationship and for the doctors to clearly understand your role with the patient.
Communicating With Friends
Your friends want to know how you’re doing and how they can help. Don’t shut them out. You need them for emotional support and to help you keep living your life.
Communicating With Employers
You’ve got to keep your job, but it’s always being interrupted by your caregiving responsibilities. You’re tired, irritable and can’t focus on the work the way you used to. How are you going to balance work and be a carer? For some, it isn’t possible, and hundreds of thousands of caregivers have to adjust their work life to suit their caregiving role. However, if you can’t afford to lose your job, we’ve got some tips to help you educate your employer and remain a valuable contributor to the company without neglecting your loved one.
Communicating with Other Carer
This is a very important part of being a carer. Talking to others who are experiencing the same thing is more helpful than you can imagine. Strike up conversations at the doctor’s surgery while you’re waiting for your loved one. The person sitting next to you may be as overwhelmed as you are and could need to talk to someone as much as you do. Pumping Marvellous offers Carer forums where carers can sit around a talk to other Carers in the same situation and share experiences, we also bring guest speakers as well who experts in areas of caring.
A big tip is – “Feel the fear and do it anyway”
Carers 12 Days of Christmas Special – Day 3
As a carer, you have to be realistic about what can and can’t be controlled. You can’t control the fact that your loved one has a chronic or progressive disease or the impact of that disease. But you CAN control how you respond to the situation. The first step is taking ownership of your carer role and admitting that it might be a long-term job. This acknowledgement allows you to plan and seek help. By accepting the job and putting a name on it, you will be less inclined to set yourself up for stress and emotions that prevent you from seeking help.
The next step is to understand the scope of long-term caring. If you don’t pace yourself, you’re going to be depleted before the job is done. Think of caring as a marathon, not a sprint. Marathoners get through a race by pacing themselves and getting sustenance and water along the way. A lot of people throw themselves into a “carer frenzy” that quickly leads to emotional and physical burnout. Understand that long-term caring can have long-term effects. Set your pace for a long race and accept the reality that you will need help along the way. The earlier you understand pacing and asking for help, the better you and your loved one will do.
Be Realistic. Think Positive. Your attitude can be the biggest barrier to taking care of yourself and doing the best job for your loved one. Your mind will believe what you tell it. Tell it that you’re a carer, that you need to stay healthy, that you have rights and that you will do the best you can but you’ll have to find help for certain things.