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CAR T-Cell Therapy Care Partners: What Questions Should You Ask the Healthcare Team?

March 29, 2023/in Care Partner Programs, Care Partner Resources, Care Partner Resources Video, Care Partner TK, Care Partner TK Communicating /by Kara Rayburn

CAR T-Cell Therapy Care Partners: What Questions Should You Ask the Healthcare Team? from Patient Empowerment Network on Vimeo.

What questions should CAR T-cell therapy care partners ask the healthcare team? Social worker Marc Paloma shares key questions to ask to prepare themselves for the CAR-T process for their loved one, explains the role they play as a care partner, and discusses team members who can support them. Marc Paloma is an outpatient hematology/oncology clinic social worker at University of Chicago Medicine.

Related Resources:

What Resources Are Available for CAR T-Cell Therapy Care Partners?

How Can CAR T-Cell Therapy Care Partners Maintain Their Own Self-Care?

Are You a CAR T-Cell Therapy Care Partner? Why You Should Ask for Help

Transcript:

Katherine Banwell:

When meeting with the healthcare team, what are key questions that CAR T-cell therapy care partners should ask?

Marc Paloma:

Sure. So, I think probably the most important thing for the care partner is making sure that they know who their key resource health providers are in the process. And, of course, not to discredit myself in any way, of course, because I think the social worker is obviously a very important partner in the whole process of CAR T. But here at the University of Chicago, we have CAR T nurse coordinators. They are the ones who kind of like sometimes translate things down into kind of plain English for patients.

They talk to the patients and the care partners about when your CAR T collection is going to happen, here are the next steps. Here’s maybe some testing that you have to have done prior. So, I always tell the care partners, that is – so that’s the person that you go to for sure. You go to your nurse, your CAR T nurse coordinator to answer your initial questions. And then they can bring other healthcare providers in to answer more specific questions.

So, one, knowing who your key resource health providers are. I think it’s also important for them – like a key question is to ask kind of in the vein of what are my expected responsibilities? What exactly am I going to be asked to do as the care partner? For us here at the University of Chicago, we do have a very set list of specific rules and responsibilities that we give to care partners that’s written down, and we provide that to them.

And it’s all the basics that you would think about making sure the patient has hydration, they’re taking their medicine, they’re getting their rides to their follow-up visits, somebody’s with them if there’s anything that they need. Somebody’s taking care of all the concrete things at home like cooking, cleaning, laundry, outside grocery shopping, things like that. So, those questions and then I think another thing is what – just so in the same vein of just so that the care partners know what to expect, I always tell healthcare partners ask questions like, what is it going to be like for the patient during the CAR T process?

What’s their condition going to be like? And then what is their condition going to be like when they leave the hospital, and I’m providing the hands-on care for them at home? Just so that they have an idea of what to expect. And I find that that’s important because there are some care providers who really think that when patients go home that they’re going to be bedbound and need 24/7 care, and we have to sometimes do some re-educating that that is most of the time not the case for patients.

Yes, you will have the responsibility of providing care, but it won’t be like you have to be awake 24/7 for weeks and weeks. So, those are important things I think for care partners to ask.

Expert Advice for CAR T-Cell Therapy Care Partners

March 29, 2023/in Care Partner Programs, Care Partner Resources, Care Partner Resources Video, Care Partner TK, Care Partner TK Understanding /by Kara Rayburn

Expert Advice for CAR T-Cell Therapy Care Partners from Patient Empowerment Network on Vimeo.

How can care partners prepare to care for someone undergoing CAR T-cell therapy? Social worker Marc Paloma shares advice to prepare oneself for the process and encourages care partners to manage expectations with friends and family. Marc Paloma is an outpatient hematology/oncology clinic social worker at University of Chicago Medicine.

Related Resources:

What Are Common Emotional Issues CAR T-Cell Therapy Care Partners Face?

How Can a Social Worker Help CAR T-Cell Therapy Care Partners?

CAR T-Cell Therapy Care Partners: What Questions Should You Ask the Healthcare

CAR T-Cell Therapy Care Partners: What Questions Should Your Ask the Healthcare Team?

Transcript:

Katherine Banwell:

Marc, what are three key pieces of advice you have for care partners who are preparing to care for someone going through CAR T-cell therapy?

Marc Paloma:

So, I sometimes use the analogy with them that for patients as well, but also for the care partners going through CAR T is almost like preparing or going through a marathon or doing marathon training. So, for the CAR T partners, I always – to the CAR T care partners, I always say as much as you can be in the best physical and mental shape as you can be going into the process because there obviously will be a lot asked of you as the care partner. I also remind the care partners remember that you are not a perfect person and there are going to be times where you maybe will make mistakes or maybe not do the best that you think you could have been or you could have done. And just to forgive yourself if needed.

And also the last thing is to acknowledge even out loud to family members to the patient that while you’re being the care partner for that you are also going through a process as well, a parallel process to something that the patient is going through. And that’s something that can create its own anxieties and insecurities for the care partner. So…

Katherine Banwell:

Yeah.

Marc Paloma:

…those are the three important things I would say.

And lastly, be patient with the process as the patient goes through the recovery and the healing process. There are many days where if you’re going forward, things are going well and it can feel like three steps forward and then maybe one step backwards.

So, just be as patient as you can with that healing process and as the care provider, you and the patient will get through it. It just sometimes takes time to go through that process.

Are You a CAR T-Cell Therapy Care Partner? Why You Should Ask for Help

March 29, 2023/in Care Partner Programs, Care Partner Resources, Care Partner Resources Video, Care Partner TK, Care Partner TK Tools /by Kara Rayburn

Are You a CAR T-Cell Therapy Care Partner? Why You Should Ask for Help from Patient Empowerment Network on Vimeo.

Asking for help as a CAR T-cell therapy care partner does not show weakness. Social worker Marc Paloma shares why it’s important to ask for support and resources. Marc Paloma is an outpatient hematology/oncology clinic social worker at University of Chicago Medicine.

Related Resources:

What Resources Are Available for CAR T-Cell Therapy Care Partners?

How Can CAR T-Cell Therapy Care Partners Maintain Their Own Self-Care?

How Can a Social Worker Help CAR T-Cell Therapy Care Partners?

Transcript:

Katherine Banwell:

Why is it so important for care partners in asking for help?

Marc Paloma:

I think it always keeps getting back to what I had said previously was that it’s important for care partners to acknowledge that they are also going through a parallel process. Obviously, it’s not the same process because the medical intervention isn’t happening to the care partner, that’s happening to the patient obviously. But there’s also a process that the care partner is going through. So, of course, the main focus of all the treatment and the follow-up visits, a lot of it, of course, is focused on the patients. Them getting blood draws and results and how are things going and looking for signs of infection and all of those things.

So, there’s so much focus on the patient that I always want to make sure that the care partner knows that they’re not being lost in the shuffle. That there’re also somebody who’s kind of thinking about them or at least acknowledging that, “Yes, I’m going through this process as well.”

And that is something that can be very stressful. It can be very taxing physically; it can be very taxing mentally. And I feel like just knowing that a care partner somebody is there to tell a care partner that like, “Yes, I acknowledge that you’re going through this and that this is happening.” I think it just helps a care partner sometimes feel that they are being supported or that they’re being heard. Because I feel that sometimes care partners feel that it’s they’re the unsung heroes doing the heavy lifting of doing the caretaking for the patient.

And, yes, it’s not about the care provider doing it so that they can get the glory of being the care partner. But it is sometimes nice for somebody to say to them, “What you’re doing is a really hard thing. And it’s obviously very important, and the patient relies on you, and our care team here at the University of Chicago relies on you.”

“So, what you’re doing is important, but it can also be sometimes difficult physically and also even mentally.”

Katherine Banwell:

Yeah.

Marc Paloma:

So, it’s just good to I feel like good to give that encouragement to the care provider.

How Can CAR T-Cell Therapy Care Partners Maintain Their Own Self-Care?

March 29, 2023/in Care Partner Programs, Care Partner Resources, Care Partner Resources Video, Care Partner TK, Care Partner TK Tools /by Kara Rayburn

How Can CAR T-Cell Therapy Care Partners Maintain Their Own Self-Care? from Patient Empowerment Network on Vimeo.

Self-care is key for CAR T-cell care partners. Social worker Marc Paloma reviews ways that he helps support care partners and provides tips to maintain self-care while caring for your loved one. Marc Paloma is an outpatient hematology/oncology clinic social worker at University of Chicago Medicine.

Related Resources:

Expert Advice for CAR T-Cell Therapy Care Partners

What Resources Are Available for CAR T-Cell Therapy Care Partners?

Are You a CAR T-Cell Therapy Care Partner? Why You Should Ask for Help

Transcript:

Katherine Banwell:

Yeah. How can they keep up on their own self-care?

Marc Paloma:

So, I try when they’re doing their follow-up, when the patients and care providers are here for the follow-up visits, I try to check in, “How are you doing?” I will remind care providers like, “Check in with yourself. How are you doing? How are you feeling? Are you feeling stressed out? Are you feeling okay today?” If possible, we also talk about having a plan from the outset at the beginning of the discussion for the CAR T of maybe having people, a small group of people that you can rely on so that if there’s a time that you need a mental health break, you can call one of your family members or one of your adult children or somebody from your faith organization or a neighbor. That small group of people that you may be able to rely on to say, “You know what? I’m needing a little bit of a break today.”

“It’s been maybe seven days, and it’s another day today we’re at home. I feel like I just want to take a bit of a break. Can I call my,” – the parents, or excuse me, “can I call the patient’s sister and have her come over, so I can go and have some time to myself?” Go to the library, read, or go out to lunch, or do a little shopping, or do whatever. Go for a drive or for a walk. So, I think those are important things. It’s almost like having a care partner for the care partner.

Katherine Banwell:

Yeah.

Marc Paloma:

You want your backup support people so that they are – they know that they’re supported and if they need some help, that they can get some.

What Resources Are Available for CAR T-Cell Therapy Care Partners?

March 29, 2023/in Care Partner Programs, Care Partner Resources, Care Partner Resources Video, Care Partner TK, Care Partner TK Tools /by Kara Rayburn

What Resources Are Available for CAR T-Cell Therapy Care Partners? from Patient Empowerment Network on Vimeo.

Are there resources for CAR T-cell therapy care partners? Licensed clinical social worker Marc Paloma shares information about support resources that are provided to assist CAR T-cell care partners. Marc Paloma is an outpatient hematology/oncology clinic social worker at University of Chicago Medicine.

Related Resources:

Expert Advice for CAR T-Cell Therapy Care Partners

What Are Common Emotional Issues CAR T-Cell Therapy Care Partners Face?

CAR T-Cell Therapy Care Partners: What Questions Should Your Ask the Healthcare Team?

Transcript:

Katherine Banwell:

Yeah. What resources are available for CAR T-cell therapy care partners?

Marc Paloma:

So, I work with a variety of local and national organizations that do provide supports for CAR T partners. Some of the bigger national organizations would be like the American Cancer Society or The Leukemia & Lymphoma Society. They can link care partners with support groups for people who are doing caregiving for patients.

Sometimes you do have to do a little bit of research and I think now, especially kind of post-pandemic still, there’s a lot of things that are being done online or through Zoom. So, there – but I do notice, especially locally here in Chicago, things are kind of getting back to where there is some in-person meetings. So, support groups, I think from organizations I think also not only to it – this is something – these are things that support the patient and the care provider both.

And this is something whereas a social worker I can help, there are many different kinds of grant programs like in-kind actual money and funds that are available for CAR T recipients. And the care partners that can help them with cover the cost of transportation for all of their follow-up visits, or they are needing to live locally in lodging or hotels following their CAR T hospitalization. There’s a lot of organizations that can be tapped into that way to get financial assistance or financial help.

And I think lastly also the CAR T companies themselves, I mean, there are – when we started doing this, I can’t even remember here at the University of Chicago four or five years ago, maybe. There were just three or two CAR T companies that were offering CAR T, and now there’s over a dozen. And we do so many now and they’re all different. And as much as I can, I try. But there are CAR T companies that actually also offer patients and care partners that kind of in-kind, kind of support like assistance like financial assistance with food, with lodging, with travel.

So, those are all things, again, I mean that helps the patient, but that also very much is helping the care provider as well because they also need to make sure that their expenses are taken care of, so. I always whenever I’m doing the initial meeting with a patient and the care provider, I always say check back and it’s, again, it’s with their CAR T nurse coordinator, check back with your CAR T nurse coordinator.

See if the CAR T that you are doing, see if that company offers any kind of actual assistance with transportation or with your lodging or whatever. And their patients who are flying from other parts of the country who come here where they don’t realize that their CAR T program actually can cover the cost of their flights when they’re going back and forth. So, yeah. So, it’s things like that.

Helping Seniors With Long Term Recovery: Tips For Carers To Make The Process Easier

June 7, 2019/in AML Blog WN, CLL Blog WN, FL Blog WN, Follicular Lymphoma, LC Blog WN, MM Blog WN, MPN Blog WN, NHL Blog WN, PC Blog WN, PEN Blog, SC Blog WN, Waldenstrom, Waldenstrom Blog WN /by PEN Editorial Staff

Every year over 525,000 Americans experiences their first heart attack while around 795,000 people experience strokes. Of that number, 75 percent of them are aged 65 and over. Recovering from medical conditions such as these can be a long road for older people. As we age, so does our bodies and immune system and recovery can take a longer time. The process of healing and returning to optimal health can be a stressful and trying time for both seniors and their caregivers, whether they are patients that are newly diagnosed or living with it for years. By implementing simple changes, you can ensure the process is a smooth and easy one for either yourself or a loved one.

Arrange For Help Sooner Rather Than Later – Both Personal And Infrastructural

The days immediately after medical events such as strokes, cardiac episodes, and even falls can find older Americans feeling frail and with limited movement. Small adjustments to both their living environment and making help available can help them in those initial times. Standard additions such as the placement of bath rails and reorganization of items to a more accessible level can help them maintain some level of independence and prevent further harm. Slips and falls are one of the most commonly reported incidents amongst seniors in America. Around1 in 4 older Americans experience falls each year and in those times where they are in long term recovery, these chances increase sizably.

In addition to making your home accessible, be sure to plan with other family members or carers a timetable to be present and help, particularly in the early days after being released from the hospital or care facilities. This is also the point where you will need to consider whether you can provide the level of long term care that person may need and do so comfortably at home.

Weigh Their Rehabilitation Options- Care Facilities Vs Recovering At Home

Speaking of providing long term care, considering the best rehabilitation option is one of the most important decisions in the recovery process of an older loved one. While most of us prefer to age at home, in a place surrounded by family and comfort there are cases where care facilities may prove to be better medically and financially. Some stroke patients can suffer long term loss of their motor skills and require round the clock care and physical rehabilitation. This can prove to be along, tough road and requires much commitment from both the caregivers and the patient. One of the most cited reasons for families not choosing assisted living is its costs. Take the time to inquire whether their state health insurance covers senior facilities and the extent of its coverage. Only then can you align your budgetary reach and make a decision on what you can afford.

Don’t Forget Their Mental Health

Our physical and mental health are strongly linked; a decline in one can impact the other. In long term recovery for seniors, this is particularly prevalent. Approximately 15 percent of adults 60 and older deal with mental illness including clinical depression. According to the Center For Disease Control and Prevention, 1-5 percent of the senior population are affected by depression. This can be further broken down into 13.5 percent of those that require home healthcare and 11.5 percent of those in hospitals. In addition, certain illnesses can trigger or worsen these symptoms including dementia, strokes and multiple sclerosis.

For those recovering, this can stem from long hospital stays or even PTSD from the actual event such as a stroke or fall. In long term recovery, there can also be a loss of motivation and sometimes, poor mental health can be influenced by a drastic change in their lifestyle such as regularly being active outdoors. It is important that we pay attention to both mental and physical recovery as they interrelate with each other. Think of ways to keep your older loved ones recovering (or in some cases, yourself) motivated. Account for small progress and celebrate them as targets. In addition, speaking to a professional or even confiding in a family member can be beneficial to them getting their thoughts out. While the way life may look may have changed, its new routine does not necessarily have to be viewed through a bad light. Establishing hobbies and a strong support network for senior citizens can prove invaluable during this time.

Medication Maintenance Tips for Caregivers

March 12, 2019/in AML Blog TC, Care Partner Resources Blog, Caregiving, CLL Blog TC, FL Blog TC, LC Blog TC, MM Blog TC, MPN Blog TC, NHL Blog TC, PC Blog TC, PEN Blog, SC Blog TC, Waldenstrom Blog TC /by Susan Ashby

Managing medications can be difficult to do, especially if you’re a senior caregiver. Helping someone else remember to take medications on time and work to find the right balance for them can seem like a daunting task. Thankfully, we’ve got a list of tips and tricks to help make things flow more smoothly.

Make Sure Providers Are Aware Of Vitamins And Supplements

Medical providers should be aware of any vitamins and supplements a person is taking. Regardless of how natural they are, they can interfere with medications and other treatments. For example, someone on blood thinners should not be taking a supplement with vitamin K. Most blood thinners work by inhibiting the production of this vitamin in the body. Taking a vitamin K supplement can negate the work of blood thinners.

Instructions

Make sure to go over medication instructions with the senior you’re caring for. If they are able to, they should know the names of each medication along with dosages and what times to take them. It doesn’t hurt to type up instructions about medications so that all information is in one place and easy to access. Consider adding in what side effects they should seek help for. That can serve as a list for caregivers and seniors to check on in case of adverse events.

Alarms

Set alarms to remind seniors to take their medications. There are many options to choose from. Smartphones allow you to set up reminders with different sounds each time which can help people differentiate between medication doses and other alerts. Electronic personal assistants like Alexa or Google Home can easily be used for reminders as well. If the senior you’re caring for struggles with newer technology, consider a few alarm clocks around the home.

Keep A List

Keeping a list of medications can help seniors and caregivers alike remember what medications are due at what time. Lists that have both a visual of what the medications look like and allow people to check off a medication dose can be useful tools. If you’re going with this kind of list, make sure that you have multiple copies. Placing one next to a pill organizer and another on the fridge can help remind people to take medication before they’ve even missed a dose.

Smartphone apps can also be helpful in tracking this information.

Follow Up

It’s important not to just set alarms or reminders, but check in to ensure that someone has taken their medication. It can be easy to turn off an alarm and still forget to take medication as scheduled. Following up with the senior in your life can remind them that they didn’t take their most recent dose.

Store Medications Properly

Most medications do best when stored between 68 and 77 degrees Fahrenheit. Additionally, many of them need to avoid humidity, direct sunlight and more. Medications should not be stored in vehicles, on windowsills or other sunny and warm spots or even in the bathroom. Consider storing them in a cool, dry space in the kitchen or living space.

When medications aren’t stored properly, it can affect their potency and make them potentially dangerous. If you’re concerned that your senior’s medications have been affected, here’s what you need to watch out for:

Odd smells
Discolored pills, tablets and injections
Cracked or crumbled pills
Pills and tablets that are stuck together
Creams and ointments that show separation
Cloudy injections

If you see these signs, contact your senior’s pharmacist as soon as possible.

Sort Medications Into Pill Organizers

Set aside time each week to go through the medication your senior takes and place them into pill organizers. These can make it easier to remember to take medications as prescribed or even transport them while traveling. Some organizers can remind people to take their medications and even alert others that a dose has been missed.

Make Sure All Caregivers Know About Medications

A sure way to have seniors miss their medication doses is to have s enior caregivers who aren’t on the same page. Without everyone being in the know, it becomes increasingly difficult to set reminders and follow up with seniors about medication doses.

Plan Ahead For Refill Needs

Refills may come up on days where a senior is alone. When that’s the case, they may forget or be unable to pick up their refilled medications. Refills may even be due when someone is planning to be out of town. Make sure to plan ahead adequately for refills and work with a person’s pharmacist.

Consider Compounding Medications If Needed

Compounding is a process where medication is tailored to a person’s specific needs. This can help remove any dyes a patient is allergic to or turn a pill into liquid for those who struggle with swallowing pills.

Get Tips from A Medical Provider

When methods to help your senior aren’t working as well as you had hoped, take some time to check in with their medical providers. Nurses have amassed a wealth of information on improving their patients’ quality of life. They are likely to have some ideas on how to make managing medications more effective.

Always Communicate With Family Members

Whatever steps you take to maintain a senior’s medication schedule, make sure that you’re communicating any difficulties with the senior’s loved ones. Family should also always be aware of any medication changes. When so many seniors rely on a variety of paid and family caregivers, it’s incredibly important for everyone to be in the loop on the storage, administration and organization of all medications, vitamins and supplements.

Susan Ashby

Susan Ashby joined the Superior Senior Care team in July of 2014 as Community Relations Manager. With over 27 years of experience in geriatric health, Susan brings a wealth of knowledge and insight to Superior Senior Care and plays an integral part in connecting consumers and communities with resources for independent living.

Tag Archive for: care partners

Helping Seniors With Long Term Recovery: Tips For Carers To Make The Process Easier

Medication Maintenance Tips for Caregivers

Make Sure Providers Are Aware Of Vitamins And Supplements

Instructions

Alarms

Keep A List

Follow Up

Store Medications Properly

Sort Medications Into Pill Organizers

Make Sure All Caregivers Know About Medications

Plan Ahead For Refill Needs

Consider Compounding Medications If Needed

Get Tips from A Medical Provider

Always Communicate With Family Members

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