Tag: Serious Illness

The news of a death is never on time.  It is never convenient, never feels normal and it will always feel foreign. From my perspective as a Hospice Chaplain and Christian heart, it is my belief that God never designed us, his beloved, for death.

But death does come. And this day would not be unlike other days when the telephone heralds the news that one of our Hospice patients has passed away. For months, even a couple of years, we watched, fed, bathed, prayed with, sang songs, and held hands with Miss Reba. But now she was gone.

As I entered Water’s Edge Village, I hurried into the facility. The staff quickly pointed to me the way to where miss Reba’s body would be. “Where is Marjorie?” I asked urgently.  Marjorie had unselfishly served as the Hospice Aide for Miss Reba. Indeed, Marjorie had spent more time caring for Miss Reba than anyone. Many times over, I watched as Marjorie coaxed Reba to eat and even spoon fed her if necessary. I can’t even count the number of times Marjorie washed, brushed hair, or wheeled Miss Reba through the facility. Her job was a labor of sheer love.

Now, her job was over. I stood in the doorway of the room. There was Marjorie, lovingly bathing Miss Reba and completing post-mortem care. The CD playing filled the room with the voices of an angelic choir singing. I stood in silence, watching as Marjorie poured out her heart, her love and yes her tears for her friend. With every loving touch, a tear fell.

Surely the Glory of God, which Miss Reba loved, was shining through our Marjorie. She dressed Miss Reba, fixed her hair and tucked in every sheet corner. Then she turned to see me in the door. Her head fell to my shoulder as both of us mourned for our friend.  Tears turned to smiles knowing that Miss Reba was finally home, with no wheelchair, no pain, no memory issues and no crackles in her singing voice.

At ViaQuest, it’s all about the love. How grateful am I for people like Marjorie, who even in death, stand strong, love our patients, and help usher them into the arms of God when the time of passing comes. Miss Reba never forgot the words to Amazing Grace. Today she is singing that song more beautifully than ever. And she will never forget a Hospice Aide by the name of Marjorie Adamson, who made all the difference in this world. Lord, help me to love like Marjorie. She is heartbeat of ViaQuest Hospice.

–Written by Ron Wilson, ViaQuest Hospice Chaplain

Learn more about how our hospice care can help you or your loved one.

Father’s Day means celebrating Dad and all he loves: backyard barbecues, spending the day together at his favorite golf course, or cheering his favorite basketball team to victory. For those whose loved one is coping with a serious illness, Father’s Day can be an emotionally challenging day. During a day that is centered around family, joy, and life, it can be difficult to feel festive when a family member may be facing a limited life expectancy. Celebrating Dad when Dad is seriously ill may not be like those Father’s Days in the past. But you can still find ways to make the day special and celebrate your dad or a special father figure in your life.

The main goal should be to make the day’s celebration feel as normal as possible, much like past Father’s Days felt, within your loved one’s ability to participate. The most important outcome is celebrating this special day together, and being focused on treasuring this time versus worrying too much about making a perfect Father’s Day.

This Mother’s Day may not be like past Mother’s Days. But it may become the most special one of all. Try and reframe your thinking to celebrate this person on their special day rather than dwell on what may have been lost. Make the most of every moment and gather these memories to live in your heart.

Five Tips on Celebrating Father’s Day When Dad Is Seriously Ill

Here are some tips on how to still celebrate this special day and what to do when Dad is seriously ill:

Ask Dad: Ask Dad about some of his favorite Father’s Days in the past. He’s likely to tell you it wasn’t about what you did, but about being together. Try and recreate some of his favorite memories.

Be realistic: Be realistic in planning the day’s activities according to your loved one’s current health condition. Dad may not be able to walk a golf course, but maybe he can hit balls in the backyard. If Dad is confined to a chair, then going out to the movies may not work. Instead, set up an outdoor screen in the backyard and have movie night at home. If the family tradition is going to a ballgame together, have the grandkids and siblings play ball in the backyard where Dad can watch from a comfortable lounge chair or from a view out the window. Activities should be based on his ability to enjoy them. Think of refocusing how you used to celebrate in a different way. Create a drilled-down version of the same loved activity.

Plan ahead: To make the most of the day, take steps to ensure Dad will feel his best. Seeing his physician to ensure his condition is as stable as possible can help ensure he can enjoy the day. Make sure he has not missed any doctor appointments. Ensure medications are refilled and taken properly. If Dad has mobility issues, consider where to celebrate. If you are going to a restaurant, find one that takes reservations so there is no long wait for a table. Choose a restaurant that is easy to navigate if he is in a wheelchair or on a walker. If a family member is going to host, choose the home that is the most handicapped friendly. Considering obstacles with preplanning can help make the celebration go more smoothly and make Dad feel less hampered by his illness.

Have a backup plan: When living with serious illness, there will be good days and bad days. If on the day of celebration Dad suddenly does not feel like going to the restaurant or leaving his house, have a backup plan to bring the celebration to him. If the plans were to go out to his favorite restaurant, pick up to go. If you were going to host at your house, cook at his house. Remember, it’s not about what you do, but about honoring your dad simply by spending time together. Be flexible, not perfect.

Allow yourself to have fun and enjoy the day: Instead of worrying about what will happen in the future, make the most of the day. Your dad is here now. Stay in the present.

Father’s Day reminds us what this special person has meant to our lives. As adults, we remember the care and protection he gave us as children, when he was healthy, strong, and we saw him as invincible. He may have lost some of who he was, but he is still Dad. Celebrating him on Father’s Day may feel different and may come with compromises, but it may also be the most precious Father’s Day of all.

If your loved one is struggling with serious illness, ViaQuest can help through expert care, symptom management, caregiver support, and education. ViaQuest Hospice improves quality of life for those living with advanced illnesses, including COPD, CFH, cancer, dementia, Parkinson’s, ALS, and kidney or liver disease. Learn more about how we can help your loved one live more fully. If you think it’s time to consider extra support, here are some great tips on how to have the conversation.

May is the month for moms. It’s a time when we reflect, celebrate and remember our mother or other women who have been meaningful in our lives. It’s often the time for family gatherings, Mother’s Day brunches, presents and making memories. Yet Mother’s Day can be exceptionally difficult when our mother or another beloved woman in our lives is living with a serious illness. Celebrating Mother’s Day when mom is seriously ill is still something we should make happen.

It’s difficult to know what to say and what to do when your loved one has been diagnosed with a serious illness. It’s difficult to celebrate special holidays like we have in the past. But remember that both of you are still who you are. Focusing on the strengths of your relationship and the time you still have together will help both of you cope with this life-changing event. And though you are both living a new reality, there are still ways to celebrate Mother’s Day that can help you focus on celebrating your loved one and remembering what you still have versus what may have been lost. When the whole world seems to be celebrating Mother’s Day, here are five ways to celebrate that special woman in your life who is seriously ill.

1. Readjust Expectations. Remember to allow the celebration to be realistic to your loved one’s health and what they feel up to doing. Be flexible and have a backup plan, as you may need to change plans at the last minute. If you were planning your traditional Mother’s Day brunch at their favorite restaurant and they don’t feel up to going, see if the restaurant offers catering. Or have each family member bring a dish and celebrate at home. Remember, it’s not about what you do, it’s about doing something together.
2. Gather Memories. This is a great time to gather memories for the future. Try and really be in the present on the day of the celebration. Focus on what is happening now, not in the future. Today you are all together, so be together. Don’t let worrying about what may happen in the months ahead rob you of this day.
3. Share Memories. There are things so much more important than gifts when a loved one enters this phase of their life. Have everyone share memories of their time with your loved one. Share funny stories of the past, adventures and misadventures. Let them see and hear the meaning of the life they lived. Bring photos of times shared and have everyone share their favorite memory. This is the time to say everything that is important to be said and to recall all of the joy your loved one has brought into your lives.
4. Go Virtual. Find something left on their bucket list and try to make it happen virtually. If they always wanted to travel to a special place, find a movie, travel documentary or blog about that destination, then go there virtually as a family. Perhaps they talk about something from the past – a trip, a place they used to live, a concert or sports event. Recreate this by creating a video of old photos from the family photo album or from online resources with your smart phone. Then take them back there and ask them to share their memories of that time.
5. Connect to Long-Distance Loved Ones. There may be family or friends too far away to be here for Mother’s Day in person. Include them in the celebration via Facetime or Zoom. They can be your surprise guests. Create a special time for them to connect to your loved one so they too can share how important she is in their lives.

This Mother’s Day may not be like past Mother’s Days. But it may become the most special one of all. Try and reframe your thinking to celebrate this person on their special day rather than dwell on what may have been lost. Make the most of every moment and gather these memories to live in your heart.

We know how important emotional support is for patients, family members and caregivers – which is why ViaQuest takes a comprehensive approach to hospice care through our Emotional Support Services. Whether coping with a terminal diagnosis, the demands of providing around-the-clock care or the loss of a loved one, we offer supportive services and therapies that are tailored to meet the unique emotional needs of every individual and situation. Learn more about how we can help you and your family.

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.

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.

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.