When Is It Time To Talk About Hospice Care? Tips About How To Talk To Your Loved One About Hospice.

April 16 is National Health Care Decisions Day. National Healthcare Decisions Day exists to inspire, educate and empower the public about the importance of advance care planning. This is a great time to consider when it’s time to talk about hospice care. The most common comment ViaQuest hears from our patients and their families is that they wish they had gained the support that hospice brings earlier in their illness.


Many hesitate to have the conversation because they mistakenly believe that hospice is about giving up or for just the final days of life. Hospice is not about giving up, hospice is about improving the quality of life and being empowered to live each day as fully as possible. Hospice works best when started earlier, allowing both the patient and their family to gain the fullest benefit of hospice’s expert and supportive physical, spiritual and emotional care.

It’s important to have people nearby who can act as a support system when needed. Build a contact list of their friends, trustworthy neighbors or members of their church. Here are some helpful insights on when and how to have the hospice conversation for improved quality of life.

When Should You Start The Conversation?

  • Aggressive treatments seems to be doing more harm than good
  • Your loved one seems reluctant to pursue more treatment
  • Your loved one’s condition has steadily or significantly declined
  • You need to find a solution to end the cycle of rehospitalizations or ER visits
  • Your loved one’s physician explains a cure is no longer feasible
  • You’re witnessing a diminished quality of life 
  • Quality of life has become more important
  • You are beyond your limits of what you can manage as a caregiver

Tips for Talking About Hospice With A Loved One

  1. Choose a time when you both feel you have plenty of time
  2. Accept that this may be more than one conversation. Don’t push for a decision the first time you talk about hospice care.
  3. Begin by acknowledging that your loved one has been through a lot lately.
  4. Ask your loved one what is most important to them now; what do they value most?
  5. 5Ask about their fears and concerns about their disease.
  6. Talk about their hopes for the future.
  7. Share your emotions, fears and concerns and what you hope for them.
  8. Explain that hospice is not about giving up but about improving quality of life.
  9. Ensure them that it is their decision.
  10. Explain that hospice is an option and they can go off of hospice at any time.
  11. Offer the option to talk with someone like ViaQuest Hospice who can explain the benefits of hospice care without the pressure of making an immediate decision.

Helping Determine When Hospice is the Right Choice 

If your loved one is living with advanced illness and needs extra care then ViaQuest Hospice might be the answer. Our patients often tell us they wish they had started hospice care sooner. Our support is most effective when we can help early on; this helps ensure you gain the full benefit of our care and support. Many physicians find that the ViaQuest Hospice program greatly enhances and extends the care they provide, and our care extends the lives of their patients. ViaQuest Hospice provides expert medical care and an extra layer of support. Our care includes, our hospice medical director,  nurses who provide expert care and symptom control in the comfort of home, CNAs who help with selfcare, social workers who can help align resources, chaplains for spiritual care and comfort and volunteers who provide emotional support and companionship.  Our friendly team at ViaQuest Hospice can help determine if our care may meet the needs of you and your loved one. Contact us today for support, resources, or answers.

8 Tips For Long-Distance Caregivers

Of the 34 million Americans who care for older family members, roughly 15 percent are long-distance caregivers. In fact, if you live an hour or more away from a person who needs your care, you are considered a long-distance caregiver. The large number of long-distance caregivers is not surprising. As children enter adulthood many move away from home for higher education, work, relationships or to live their passion. Caregiving in general can be challenging but long-distance caregiving comes with even more unique challenges. So, how can you better manage caregiving from a distance? Here are 8 tips for long-distance caregiving.


THE TOLL OF CONGESTIVE HEART FAILURE

Know and connect with their healthcare providers.

Even though you may not have the option of accompanying your loved one to their medical appointments, you can still build a connection to gain their physician’s unbiased assessment of your loved one’s health and advocate for their care. Start by creating a detailed list of your loved one’s medical providers. Then reach out and ask for a telehealth meeting or call. Your loved one may have an online portal from their healthcare provider where you can gain access to ask questions or follow their care. Your loved one will need to authorize the doctor to release their private health information to you, but it is typically a simple HIPAA release form that will need to be filled out. Or you can consider gaining Medical Power of Attorney. Connecting to their medical providers can give you peace of mind by having a realistic view of their health and allow you to be more involved in advocating for their care.

Build a support system.

It’s important to have people nearby who can act as a support system when needed. Build a contact list of their friends, trustworthy neighbors or members of their church. There’s nothing more worrisome than when a loved one does not answer the phone for several hours. You need someone nearby who can check on mom or dad when needed. Many neighborhoods now have neighborhood Facebook pages. Ask to join, this is a great way to keep up with what’s happening in the neighborhood.

Communicate more often.

If you are caring for a loved one who’s far away, you know how challenging it can be to have a realistic view of how they are faring. Setting up frequent Skype, Zoom or Facetime calls can help you gain a better sense of how your loved one is managing. Visually connecting, even on a screen, can give you cues on how they’re doing physically and with selfcare like getting dressed or bathing.

Engage local resources.

If your loved one is having challenges with activities of daily living like housekeeping, grocery shopping or cooking, you can arrange local support. Most grocery stores offer online shopping with curbside pickup and home delivery options. There’s also companies like Instacart that will shop for and deliver groceries. You can also research trustworthy housecleaners and arrange bi-weekly or monthly cleans. Consider joining Nextdoor for their neighborhood, never share that your loved one lives alone but this can be a great place to reach out to locals to find local resources for lawncare, home repairs, transportation services and housekeeping.

Set up online banking.

Even from a distance you can help your loved one manage their finances. By setting up online banking and drafts for monthly bills you can provide an easy solution.

Make an emergency plan.

When long-distance caring the biggest worry that keeps you up at night is what if something happens. It’s critical to have an emergency plan. Make sure you have copies of important legal and medical documents like insurance policies, advance directives, and their will. Don’t forget to have a list of your loved one’s current medications. Know where the closest hospitals and first responders are. It’s also important to consider gaining healthcare power of attorney and durable power of attorney. Have contact information for neighbors and friends.

Embrace technology.

Consider (with their permission) installing cameras at your loved one’s front and back doors as well as in the main rooms of their home like the kitchen and family room. This can alert you to any potential problems like a fall or if it’s late in the morning and you’re not seeing them move around the house. It will also give you a good view on how they’re faring with mobility, their safety and their ability for selfcare. If cameras seem too intrusive then consider web-based sensors or wearable technology. If mom or dad are struggling with medication compliance then an automatic pill dispenser may be an option. Some pill dispensers come with integrated, wireless fall detectors and panic buttons. Sometimes something as simple as an Alexa or Google Assistant can provide additional support in ordering groceries, finding resources, and information your loved one may need, even making phone calls or turning lights on or off.

Remember you.

Caregiving, as rewarding as it can be, is not easy. Long-distance caregiving can come with even more stress, powerful emotions and anxiety. Long-distance caregivers often feel like they are not doing enough. They harbor guilt for not being there more often and struggle with feeling like there is no way they can provide helpful care across the miles. Remember you are doing all you can and even if you can’t be there as much as you would like you’re still playing an important role in the wellbeing of your loved one. If you are feeling overwhelmed or that endless sense of guilt, consider joining a caregiver support group. Connecting to others who understand what you’re experiencing can help you feel less alone in your struggles. Sharing these experiences can bring you a much needed outlet and help you gain perspective. A mental health professional can help with stress management techniques. If your loved one is under our care, ViaQuest Hospice provides emotional support to family caregivers. Just like you being there for your loved one, know there are others who can be there for you.

What if you discover that your loved one needs more help?

Through better communication and getting a closer view of their world you may discover that your loved one needs more care than you can provide.  A geriatric care manager who can make in person visits and help arrange in-home care may be an option. If your loved one is living with advance illness and needs extra care then ViaQuest Hospice might be the answer. ViaQuest Hospice provides expert medical care and an extra layer of support. Our care includes, our hospice medical director,  nurses who provide expert care and symptom control in the comfort of home, CNAs who help with selfcare, social workers who can help align resources, chaplains for spiritual care and comfort and volunteers who provide emotional support and companionship. 

The role of a long-distance caregiver is challenging, but by organizing, aligning resources, leveraging technology and securing local support you can have a huge positive impact on the wellbeing of your loved one.

Be Your Best Care Provider

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5 Ways to Battle Caregiver Burnout

No one who provides care for an ailing or aging loved one would likely describe the experience as easy, but for many, caregiving is an enormously taxing endeavor.

As of 2020, some 53 million Americans provide unpaid family care, per AARP. And of those, 36% consider it a highly stressful job. It’s no wonder, then, that so many people find themselves approaching, experiencing or – as some might put it – way past the point of caregiver burnout.

The ways in which caregiver burnout manifests itself are legion, but the voluminous list includes:

  • Exhaustion and fatigue
  • Physical and/or financial anxiety
  • Depression
  • Resentment
  • Withdrawal from personal relationships and social situations
  • Loss of interest in activities previously considered enjoyable
  • Neglect of other responsibilities
  • Irritability, impatience and a tendency toward overreaction
  • Guilt for engaging in non-caregiving activities
  • Feelings of hopelessness or helplessness
  • Weight gain
  • Changes in appetite
  • Insomnia and other changes in sleep patterns
  • Difficulty relaxing
  • Lowered immune response; a tendency to get every cold and flu that’s going around
  • Excessive drinking, smoking or use of drugs (including prescription medications)
  • Suicidal or self-harm ideation
  • New or worsening health problems
  • Difficulty concentrating
  • Mood swings
  • Headache, stomachache and similar pain

So what can you do about it?

Attend to Your Psychological Needs

Going from an understandably negative attitude to a positive one isn’t as simple as the flip of a switch, but there are plenty of small steps you can take to improve your outlook. One method is to look for anything you can celebrate: small victories, silver linings, minor milestones, the appreciation your loved one might express if they were well. Some people find it helpful to read up on the ailments their loved ones are suffering from so they feel they have a stronger grasp on the situation.

Be Comfortable with Your Own Emotions

Another key is the one we all know from the five stages of grief: acceptance. Understand your own personal limits, and set realistic goals. Develop coping tools and don’t let the act of caregiving be your entire existence. Above all, recognize the inevitability of negative feelings. It’s tempting to translate negative thoughts into guilt: “I’m a terrible person for feeling this way.” Don’t beat yourself up. Acknowledge that every caregiver experiences despair and frustration, and that you’re not alone in whatever you feel.

Attend to Your Physical Needs

Burnout pushes many caregivers to start neglecting their own needs, believing, often subconsciously, that those things should be secondary to their duties toward their loved one. The truth, though, is that a healthy caregiver is a more effective caregiver. Meeting your basic physical needs – exercising regularly, eating a healthful diet, getting enough sleep – is just as important for family caregivers as it is for anyone else.

There’s Nothing Wrong with Joy

Take the opportunity to prioritize your own enjoyment as well, rather than ratchet back on activities you once found fun. Get out of the house when you can, even if it’s just for a quick walk. Work periodic breaks into your daily agenda, and don’t skip them. Some sources recommend having a specific time of day – often the early morning – set aside for activities that you find relaxing, while others suggest setting personal health goals (and taking satisfaction in achieving them).

Don’t Let Your Own Health Suffer

Not to be forgotten on this point is not to forget your own medical care. Just as you’re looking after the health of another person, so, too, should someone be looking after your health. Keep up on your regular doctor visits, and let your doctor know that you’re acting as a caregiver for a loved one – your doctor can factor that into their assessments.

Maintain Personal Relationships

Social relationships are enormously important for caregivers, especially for those feeling the effects of burnout. You might feel as though discussing your struggles will place an undue burden on friends, family and other acquaintances, but keeping your emotions to yourself won’t do you any good. It may even be worthwhile to set up a recurring check-in with a trusted friend or family member so you can’t easily procrastinate this kind of interaction.

Learn to Say Yes

Beyond that, having personal relationships means you have people around you who can help, even if it’s only in limited ways. Don’t be afraid to ask for help – and if it’s offered, say yes! Caregivers sometimes find it difficult to relinquish control of some aspects of their work, but it’s worth working to overcome your internal resistances. If you have a personal support network, it may even be worthwhile to come up with a list of duties you can delegate, or divide up responsibilities where possible.

Making Health Updates Less Stressful

For some, keeping friends and family updated on the condition of an ailing loved one can be a millstone all by itself. If that rings true for you, consider looking into resources that make the job easier, such as CaringBridge or MyLifeLine.

Establish Relationships with Other Caregivers

Just as you might confab with co-workers about the difficulties posed by a particular project, you may find relief in talking to other caregivers about your shared experiences. Look up caregiver support groups or workshops, whether in your geographic area or online, and make connections with people who are going through the same things you’re going through. It may also be worth your while to look into the resources offered by your local agency on aging.

Look into Home Health & Support Services

If you’ve overcome your hesitancy to accept help, but are still finding your responsibilities as caregiver difficult to bear – even if only from time to time – there are opportunities out there to seek support from professionals.

Health Services Right at Home

Many professional health services can be delivered right at home, especially for hospice patients. Social workers, home health aides, nurses and other health professionals can take some of the burden off of you by bringing their skills directly to your loved one – including care they might receive in a hospital setting, without ever having to leave home.

Another hugely valuable option for caregivers is respite care: a chance to have trained professionals look after your loved one for a set period of time so you can unwind and take a break from the stress of their health care and well-being.

Work with ViaQuest to Be the Best Caregiver You Can Be

At ViaQuest, we have a vast array of services available to help caregivers avoid caregiver fatigue while ensuring their loved ones are well looked after. Reach out to us today to learn about our caregiver support services, and make the caregiving experience as positive as possible for both you and your loved one.

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