Homecare & Hospice Association of Utah

Where to Start?

A famous quote by Rosalyn Carter seems to sum up caregiving.

“There are only four kinds of people in the world…

Those who have been caregivers.

Those who are currently caregivers.

Those who will be caregivers,

And those who will need a caregiver.”

Life is fragile, and from time to time we all need a little extra help; some more than others. Caregiving is one of the highest forms of human connection and rewarding expressions of love in this life. Notwithstanding, it can also be a frustrating, exhausting and trying experience at times. Relationships with family and friends may suffer; your career may not receive the attention it should; you may feel you never have a moment to yourself, yet still experience feelings of guilt for neglecting other people and matters in your life; your physical and mental health may be compromised . . .

For many of us, caregiving is an opportunity to demonstrate our appreciation for a loved one who has cared for us. So how can a person care for someone else and not lose themselves in the process? This will be a process that will unfold differently for everyone and for every family. Fortunately, there is help available. However, many resources go undiscovered or at least unutilized. We hope you find tips, resources, and support on this website as you continue your caregiving journey. You are not alone! The following are steps that can be taken to make the journey more tolerable - if not more enriching:

Seek Help for Your Situation. It’s important to search for resources that meet your specific needs, as each caregiving situation is unique. It's likely that there are insurance benefits available to your loved one through Medicare, Medicaid, Veterans Affairs, or Private Insurance that will help pay for their support. Some programs even pay family members to help care for their loved ones. Seeking and obtaining help demonstrates maturity, commitment, concern, and self-respect. It also helps to maintain a positive and balanced understanding of the realities of caregiving.

Learn About the Disease, Diagnosis, and Symptoms. Many family caregivers are caring for a loved one with one or more medical diagnoses. Researching the disease, treatments, and prognosis can help you to know what to expect in the future and give you a better idea of how you can help now. Education is power. It gives you greater compassion and better a understanding of what the person you are caring for may be experiencing.

Create a Safe Home Environment. Home safety checklists are available from AARP and can be helpful no matter what age of person you are providing care for (visit www.aarp.org and search Home Safety Checklists).

Develop a Care Plan. It’s important for Family Caregivers to develop a Care Plan ( or “Life Plan”), with the person receiving care whenever possible. Plans should be holistic in nature so that all your loved one’s needs, including those that follow, are appropriately and sensitively addressed:

Health Care
Personal Care (Bathing, Dressing, Cooking, Toileting)
Advanced Care Planning
Finances and Last Will and Testament
Home and Safety
Mental Health and Memory
Spirituality
Passions
Existing & Available Social Supports

Find Support from Family and Friends. Don’t assume that others aren’t willing or able to help. Oftentimes, they just don’t know how. The worst that can happen is for someone to tell you, “I’m sorry, but I can’t right now.” At least you know, and nobody is worse off for the asking. Once a Caregiving Plan has been developed, the next step is to hold a Family and Friends Meeting. Invite all family members and those who are closest to you and your loved one (e.g., friends, neighbors, faith leaders). Even if invitees live far away and have to join the meeting remotely, they may still be able to play a part in the plan by making phone calls to your loved one, helping to coordinate outside care, managing finances, etc.

Attend Caregiver Trainings and Support Groups. Caregiver trainings are a great place to learn about available resources and tips for assisting your loved one with activities of daily living. Support groups are a safe place to discuss concerns and common experiences, receive and offer emotional support, and share practical solutions to caregiving situations. Support groups in Utah are often sponsored by national associations like the Alzheimer’s Association and the American Parkinson Disease Association for caregivers of people with specific medical conditions. There are also general caregiver support groups sponsored by local aging service providers and community organizations. Many are now offered online as an option for those with limited ability to attend group meetings. See Helpful Caregiver Links and Join HHAU as a Family Caregiver Member to receive invitations to our monthly meetings/trainings.

Recognize Your Limits and Delegate. A discussion leader should be appointed to lead the Family and Friends meeting. Open discussion informs participants of issues and concerns, and will help the group identify those who are willing and able to help. Whether or not your loved one should be invited to participate in this meeting needs to be a family decision, because the experience could elicit feelings of guilt or constrain some participants from sharing certain feelings or concerns. Be realistic about how much of yourself and your time you can give. Create a list of the tasks you are able to provide and those you need help with. It’s important to realize that this list will likely change along with your needs and those of your loved one over time. Share your list with your family and friends and be specific when asking for help. Allow team members to take part in deciding what they can and cannot do and abstain from passing judgement or comparing. Take into consideration that everyone has their own limitations, for whatever reason, as to what they can or cannot do.

Learn how to Communicate with Healthcare Professionals. It’s important to try and learn the terminology that doctors, nurses, and discharge planners use in discussing health issues so that you can better assist your loved one. However, it’s equally if not more important, not to be afraid to stop healthcare professionals and ask them to re-explain something that you don’t understand or to use secular terms.

Be Honest with Yourself and Get Help if Needed. Stress can be positive or negative, and caregiving is stressful. Be aware of your self-talk and seek help if you notice yourself using phrases such as “I can’t do this any longer,” “I’m at my end,” or “I don’t know what else to do.” Help lines are available, including a Suicide Prevention Hotline if you are feeling desperate: 1-800-273-8255. The world and your loved one’s life is better because you are in it.

Plan Respite Time and Use it! Sometimes a short break is all you need to recharge and keep going. That’s what respite is –temporary relief to family members and other primary caregivers caring for an impaired individual at home. It can be provided in group settings, an individual setting, or a long term care facility. The availability of all three types of respite varies from county to county, so contact your local Area Agency on Aging to see what is available in your community.

Adult Day Care and Adult Day Health are a type of respite that is covered by some Medicaid/Medicaid Waiver programs, VA Benefits, and private long-term-care insurances. In-patient respite is available as a benefit to patients who are on Medicare hospice services. Lastly, don’t forget to work with family, friends, and faith volunteers to schedule companionship visits that could provide you with some respite time.

About the Association

HHAU is a 501(c)(3) Non-Profit Organization. Your donations, membership, sponsporship and volunteerism are used to help support services provided by Utah's Homecare & Hospice industries to our loved ones, neighbors and friends. Thank You for your support!

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Contacts

Phone: 801-312-9110 Fax: 801-312-9110