As a caregiver, how do you know when it’s time to start preparing for hospice for your loved one?
For each person it will be different, given they’re diagnoses and condition. But there will be some similarities for those who will need hospice care. I hope the information below will help other caregivers who are preparing for this final chapter of life.
Signs it is Getting Close for Hospice Care
The last few months of Mom’s life, I could see she was quickly moving towards the need for hospice care. These are some of the signs I observed:
- Overall, she was sick more often this year than the last, and the health conditions she was dealing with were worsening, though not yet completely debilitating.
- She had three main diagnoses and they were all progressively eroding her health, energy and memory.
- The memory loss slowly worsened over the last few years, but she continued to know her family and friends up to the end, for which we were so grateful. Mostly she lost insignificant details of time, daily events, and details about her health issues. She continued to read her Bible, work on her word search puzzles, and enjoy her baseball games on television up until the last two weeks of her life.
- Her appetite remained good even though she was on thickened fluids for over two years. But her taste, sight and hearing faded more noticeably in the last six months.
- Though her oxygen level remained good, the threat of pneumonia was always present with the fluid and fibrosis in her lungs, and her immune system compromised.
- Her energy level continued to decrease and she dozed off more often during the day.
- Bowel functions began to be more erratic.
- The worst enemy proved to be the slow blood loss. The rate of blood transfusions steadily increased over the past year, from one every few months to three times a month. In the beginning, they gave her greater strength and endurance. However, when it became a weekly necessity, she made an informed decision to be done with them. At that point, they were no longer helping except to keep her barely stable, and they were harder to endure than the benefits received. The merciful part of this was that when she was done, she had only a few weeks to live with relatively little pain.
Depending on the individual’s diagnoses, some will be under hospice care longer than others. So how do you know when it’s getting close to that time?
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Questions for Caregivers to Ask: Are We Getting Close to Hospice Care?
- Are ongoing medical treatments for the patient no longer helping or working?
- Has the patient had one of more serious infections or hospitalizations in the past 6-12 months?
- Does the patient have difficulty swallowing?
- Are the senses fading more noticeably? (hearing and vision loss, taste, smell)
- Is there any expectation of a recovery or further treatments to try, or is it time to focus on providing comfort to relieve symptoms?
- Do caregivers need additional physical and medical support to provide care?
- Even if you are not quite to this point, but you know it’s getting close, it’s okay call for an evaluation and learn more, ask your questions, and find out what hospice can and cannot do for your loved one.
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When You Think it’s Getting Close
- Ask for a hospice referral before you think you actually need it, but when you feel it may be getting close. Sometimes people wait too long to request hospice care. They will help you understand what they do and what they cannot do, and whether your loved one is eligible for hospice now or when to check back. But it will get them in their system so you can call back with questions when it is getting closer. And you will have some relief knowing you have done some of the preliminary steps to prepare for this stage of care.
- Ask the primary care doctor or the specialist they see most often for the evaluation referral. Ask if they can determine the length of time left due to their illness or complications. Ask how long they would have left if they chose to stop all treatments, and how to know when it’s time to stop.
- For someone with Alzheimer’s, this may be difficult to know, unless they have another diagnosis that takes precedence. If you are the caregiver for someone with Alzheimer’s, this means you will need to be the one to ask the questions, know what to ask, and explain it over and over to your loved one to help them understand, to help them make decisions, and to help ease their anxiety and confusion.
- If the doctor doesn’t feel they are ready for hospice yet, ask if there are other palliative care programs your loved one may be eligible for, while they are still undergoing treatments. My parents were eligible for a house calls program where an ARNP comes in once a month, or more often if needed, to check on them. If they got sick, the ARNP could come and treat certain issues or send them to hospital if needed. They are also on call 24 hours a day for questions. This is helpful when someone gets sick during the night and you’re not sure whether to call 911 or treat them at home.
- A hospice nurse case manager and social worker will come to the home to do an evaluation and this is a good time to ask all the questions you can think of, and make notes. Save their cards even if they are not yet eligible for serves, as you will have more questions later.
- The hospice nurse and the patient’s specialists will be able to let you know if your loved one is ready for hospice, getting close, or what other qualifications they will need to meet before being accepted into hospice care.
- Hospice can provide care at home, in an assisted living or nursing care facility, in a hospice home or the hospital. Your options may be limited by the type of insurance you have. If it is an available option, visit the hospice house associated with the hospice program for a tour of the facility and ask more questions about care. Also, find out whether the length of stay is determined by insurance, or until the patient dies.
- If you think your loved one will need more extended care than you can provide before hospice begins, and you have not previously visited nursing home facilities, do that now to determine which nursing home facility you prefer. (If you will need to put your loved one on Medicaid to go into a nursing home facility, you may want to hire an estate attorney who specializes in keeping up on all the laws surrounding this. Though this will be an added expense up front, it could save you and your loved ones thousands of dollars in the long run by protecting as much of their assets as possible. Ideally, this step should be carried out several years before your loved one gets to this point of need in their care.)
- Hospice care options will be determined by insurance or Medicare. For example, my sister-in-law’s father was a veteran and could choose hospice under the VA or Medicare. He chose hospice care at home under Medicare care. Later, her mother, who was living in an assisted living facility, developed pneumonia, went to the hospital and from there to hospice house. For her, Medicare guidelines were for hospice care to be one week in the hospice house. If the patient did not passed away and was well enough to be released, then that’s what happens. So, hospice care continued at the assisted living facility until she passed away. For my mother, with a private Medicare option, once she went into hospice house, she was able to stay until she passed away.
- Interim care is what you will need the most help with. Determine ahead of time what is covered by your loved one’s insurance by calling the insurance company to see what options will be available so you can begin thinking of what interim care you will need to plan for. I knew I would need more physical help at the point my mother was no longer physically able to sit up or stand on her own, until she was under full-time hospice care.
- To help with your own stress level, prepare for this as much as possible ahead of time, to hire extra help on your own or from a home health agency, or have family ready step in to help more until, and even after hospice steps in, as hospice will not take over complete care until the very end of life. This is especially important if you know you cannot lift the person on your own or with a gait belt. This will be a very stressful time and you will need all the help you can get. I was grateful we had just two days at home where I needed round the clock help with my mother until she was admitted to the hospice house.
- The more you can plan ahead and get help from others in the family, including the preferences of your loved one, the less stressed you will be. Include your loved one as much as they are able or interested in planning their funeral or memorial service. Simply ask their favorite songs, verses, prayers, who they might like to speak at their service. Would they like flowers or would they prefer to have a memorial fund for their favorite charity? Let them know you want to celebrate and honor their life by including as many of their wishes as possible. It is even more helpful if they are able to plan ahead and make funeral arrangements while they are still in relatively good health.
- If your loved one is able, and if they have the desire, ask them if they would like to go through their belongings, what they want to do with them or who they would like them to go to. If they are not able or have no interest in this, plan to do this later. You can ask the family member who knows them best to determine who they think they would like certain items to go to. Both of my parents have made this process easier by continually getting rid of things they no longer needed the past few years. Also, make sure someone in the family with power of attorney knows where to locate all important financial and legal documents.
- You may also need to determine how you will rearrange or get rid of some furniture in order to bring in a hospital bed or other equipment if you are doing hospice at home. You may need family or friends to help with moving things around ahead of time, as the medical equipment company will only deliver the items needed.
- It’s good to have extra care supplies and medications on hand in case of emergencies, but when you see it is getting closer to time for hospice, purchase only what is needed for the next few weeks.
What to Expect Once Hospice Begins
- At first, the nurse case manager and the social worker will come and ask a lot of questions that the caregiver or someone in the family will need to answer, as the patient may be unable to, due to various reasons. These questions involve insurance, diagnoses, medications, diet, strength and energy levels of the patient.
- The nurse will only come once or twice a week to start, to check on the patient and determine what they need. They will also rely on information you give them regarding worsening symptoms, sleep and diet changes. However, a nurse is available 24/7 to address the patient’s pain and symptoms by phone or to make visits to the home as needed. Hospice can also assist somewhat with respite care for the caregiver. Ask what is provided for this.
- The hospice facility doctor works in coordination with the primary care doctor and other doctors to assist with symptom management and medical management.
- This is the time to invite those closest to your loved one to make their final visits, phone calls, to send a card or note to share their love, prayers and comfort. When my mom asked why she was getting all these loving cards, I was at the emotional point where I could not explain to her again, every day, that she was dying. I simply smiled and told her, “Because they love you!” She remembered soon enough she was dying. She didn’t need me to remind her daily unless she asked or was confused about the reason.
- Once under hospice care, everything is covered under insurance or Medicare – medications, equipment and any other supplies needed. They will take an inventory of what you have and determine what you need. You can plan ahead and ask for certain items that you know you will need very soon so you’ll have them on hand when the need arises so you don’t have to be left waiting, or your loved one suffering. Medications may be delivered to you on certain days.
- Once all life-saving treatments have ended, such as blood transfusions, the doctor or hospice nurse will let you know what medications and supplements are no longer needed and which ones to continue. They will also begin to add what is needed for pain or anxiety to make your loved one comfortable.
- Plan to ask for extra help from family, private pay aides or from a home health agency. Don’t try to do everything yourself. You will already be worn out from the caregiving you have been doing for months or years on end. You will need every extra ounce of energy to take care of yourself and deal with your own grief. You will also need time to help plan and make funeral or memorial service preparations.
- Because my mother had Alzheimer’s and was more confused towards the end, I stayed with her the whole time she was at hospice – to keep her company, explain things to her, and call for help when she needed it. Most Alzheimer’s patients will not remember how to call for help at this stage and I couldn’t bear the thought she could not get help when she needed it. I was thankful my brother and sister-in-law were able to stay with my dad, take care of planning her service, bring Dad to visit her daily and give me short breaks. This allowed me to focus on being with mom and make sure she was comfortable. This is so important, especially if someone has Alzheimer’s. As the elderly are often hard of hearing, and easily confused, with or without memory loss, they need an advocate to help navigate the system and get their needs met. As wonderful and caring as they are in a hospice setting, they are still very busy and overworked at times. Your loved one will rely on you to help others know when they need help.
Hospice Cares for the Whole Family
Hospice care is the greatest gift of care not only for your loved one, but for your whole family. With the growing burden of care, as Mom got weaker and more fragile, I felt inadequate, ill-equipped and more stressed to know what to do as things got worse. Once hospice took over my mother’s care, I felt a great relief entrusting her to their calm and caring expertise, enabling me to just be with her, and care for her by being a calm and loving presence. I was still able to help in other ways, with feeding, giving sips of water, cooling a fever with a cool washcloth, or calling for more help as needed. I was able to sit with her, rest or sleep, knowing she was in the best of care.
The hospice social worker is available to answer questions and give you resources to contact. The social worker can help address any planning needs at this point, such as Advance Directives, funeral planning, insurance eligibility and transportation. They can also offer supportive counseling to the patient and family to cope with this stage of care.
A chaplain is available to answer questions, help you work through grief, or pray with you and your family. The hospice chaplain can also assist with memorial services and planning if you do not have a minister.
Bereavement specialists provide bereavement groups and individual counseling for the family to deal with the death and loss of their family member. Hospice bereavement care will be available to anyone in your family who wants or needs it, for up to a year after your loss.
FYI: What Hospice Cannot Do
Hospice will not continue treatments for the life-limiting disease. Hospice comes in after all treatments have ended. Though a patient may rarely be admitted briefly to the hospital from home care, patients will not go from hospice care to ICU care. Hospice care will manage symptoms and pain with medication to make the patient as comfortable as possible in whatever setting the patient or family chooses.
While home health care – or other house call programs – can treat some illnesses with medication, or take blood work for lab orders, none of these programs can assist with blood transfusions or the necessary lab work for these because of the laws surrounding these. This was one of my main needs for help for Mom, but because of these laws, I had to take her in each week for the blood typing lab work, and then back the next day for the blood transfusion. This is very hard on the elderly, getting in and out of the car in 90-plus degree heat, especially when they are already very weak.
In future posts, I will share some tips on these aspects of death and dying:
- how to hold on to your joy when a loved one is dying
- how you can make your loved one’s funeral or memorial service a celebration of life
- and a list of tasks that will need to be taken care of after your loved one passes away
If this post has been helpful to you, please let me know by posting a comment below, or by sending me a private message here. If you know other caregivers in need of helpful tips, please share this link with them: You’ll find a list of all my caregiving posts here. In the top right sidebar of this page, or at the bottom of this post, you can also sign up for new posts to be delivered to your inbox.
One of the most helpful resources a nurse gave me when I went to visit the hospice house, was this little booklet by Barbara Karnes, RN, called Gone from My Sight: The Dying Experience. These can be ordered on her website, bkbooks. Also, be sure to take a look at her blog. You will find a lot of very helpful information on end of life care and dying well.
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