Hope for living, loving, and caring with no regrets!

Self-care is Self-preservation

Episode 89

Rayna Neises, ACC, host, reflects on the thoughts shared during last week’s interview with Deborah Bakti.  She expands on the suggestions Deborah provided during their talk and in her book, “Now What?” regarding long-term care facilities for families:

  • Placement is needed when a person’s physical needs are to a point where the family cannot meet those needs, or the person cannot care for himself/herself and no one else is available.
  • Medicare/Medicaid eligibility varies from state to state and is determined through an assessment tool.
  • Assistance with a private pay placement is available through several national and local companies.
  • Be aware of and recognize changes so that you can start taking steps to make this difficult decision.
  • The #1 misconception about long-term care facilities is that your loved one will receive one-on-one care 24/7.
  • Another misconception is that you will be able to call and speak to a care team member right away.
  • Be familiar with the care plan, but also flexible.
  • It is okay to voice concerns using a kind manner.
  • Long-term care does not equal improvement or getting better.
  • Once the decision is made, understand that your role has changed, and you must give over the responsibility to the facility and the care team.

Transcript

*Transcript is an actual recount of the live conversation

When I get old and can’t take care of myself. I want to live in a nursing home with a bunch of people I don’t know. Said no one. Ever. This is a quote from Deborah Bakti’s book, Now What? Managing the Emotional Journey of Long-term Care for Families. I love that quote, it’s so great. Welcome to A Season of Caring Podcast. This isRayna Neises, your host. Where there’s hope for living, loving and caring with no regrets. And today we’re going to jump back into the topic of long-term care facilities and some things from Deborah’s book. I’m glad that you’re here with me today. Long-term care, it is tricky, like Debra said in that quote none of us see ourselves ending up there. Right? The thing is some of us will, there is a need for that type of care. And we have to understand that we might find ourselves or our loved one in a place where that kind of care is required. So let’s talk a little bit about placement. How do I know where to place my loved one? And how do I know when it’s time? As I was researching the topic the most important thing that came up is placement is required or needed when a person’s physical needs are to a point in which families cannot meet those needs. Whether it be nursing care is required frequently or daily. Or they cannot take care of themselves and there’s no one else available to do that. That leads us to placement. So if your loved one is at that point, then the question becomes now what? So one of the things to consider about placement in a longterm care facility is who will pay for it? We know that money can often be a big factor in the type of care that we receive and this is true in long-term care facilities as well. When we’re considering whether or not Medicaid/ Medicare will pay for that placement, or if a family will need to private pay, then there are definitely lots of questions around that. Whether or not Medicaid will cover your loved ones long-term care facility depends on their financial status as well as their eligibility. A specific level of care required has to be met. In order for a person to require a nursing facility level of care it varies according to states. States use a functional assessment tool to determine if the person qualifies or not. The assessment is generally a list of questions about one’s ability or inability to perform daily living activities, bathing, dressing, toileting, grooming, eating those types of things. This assessment varies from state to state and the level of performance requirements will vary from state to state. In fact, you might be eligible in one state for Medicaid benefits in a long-term care facility and not qualifying in another state. So that’s important to consider when you’re moving a loved one from one state to another. If they do not qualify, then you are looking at private pay. Private pay means that as a family, the resources will need to be there to be able to pay for the service. Rarely do people qualify for Medicare to pay for assisted living. So if your loved one is at a point in which they need assisted living this is something that will usually come out of pocket. If you need help with placement for private pay, then there are lots of different companies that are available, who helped with this. There are national chains that you might’ve heard of like, A Place for Mom and there’s local placement companies. Many of the local placement companies actually will meet with you and your loved one, gain a better understanding of what your needs are. They might even make appointments to visit your top choices and often attend with you. Most of the time these services are free because the company has given a referral fee by the facility in which you choose to place your loved one. So, if you want to check into services that can help answer some of your questions then I would recommend you do a search. You can also contact your local Area Agency on Aging, they have lots of resources, as well. So private pay would be when you’re out of pocket. If your loved one is on Medicare and reaches the required level of need then Medicare could also be a way to pay for your loved ones long-term care facility. Medicaid, would be dependent upon the level of care required as well as the financial situation of your loved one. So it’s a very complicated process to place someone. Oftentimes it happens in an emergency situation. A time in which there’s been a big sudden change, and that can be really difficult to handle. And I love that about Deborah’s interview just talking about getting a better understanding of what’s needed when we make that placement. I started with a quote from her book. No one really wants to be in this place. And we know has family members that are caring for a loved one it’s not really where we want it to be either. Becoming aware that things have changed and you’ve gotten to a point where this decision has to be made that’s really the first step and recognizing the impact that it’s having on you, your feelings and your loved one. Acknowledging those things is really step number two. So it’s really important to start taking those steps as you find yourself in a place where these things are going to be needed. So additional information that came from Now What? in Deborah’s book that I really enjoyed was the 20 misconceptions that people have about longterm care facilities. And the number one question was, I thought my loved one was going to get 24/7 one-on-one care. I don’t know that most of us think anybody’s going to get one-on-one care 24/7, but I definitely think the expectation is we know that our loved one needs lots of care. And so we do expect there to be lots of care. And Deborah goes on to explain that oftentimes there will be a one-on-one ratio in the home but that is employees to residents. And obviously not every employee is working all at the time or 24/7. So there’s not a one person per one resident in the building at a time. In fact, the numbers of people employed in the facility would include your kitchen, administration cleaning staff, everyone employed by that facility. So there might be a hundred residents. There might be a hundred employees, but again, not all of those employees are hands-on with your loved one. And obviously we know that there’s not going to be one person sitting right there with them. All the time. So understanding. What is realistic is really important. Understanding that each person within the facility has a different level of care requirement. Some people will need more care than others. Your loved one will need more care at times than other times. So if there’s been an illness or an injury of some type, obviously their need increases, but their independence might also increase as they recover from those things. And we want them to be as independent as possible, even in a situation where they’re in a long-term care facility. Another great misconception that Deborah mentioned her book was I should always be able to call and speak to a care team member right away. It’s interesting because a lot of these things I struggle with a little bit, I understand that they’re busy but I think it would be really, really difficult not to be able to get a hold of somebody. And I’m sure with COVID. It has been a whole new level of anxiety for many family members who find themselves in this place. But realizing that there are definitely busy times during the day. And not trying to make a phone call at that time, our being understanding of the need to leave a message and looking for a call back definitely makes sense to me. Realizing that around mealtime obviously it’s all hands on deck to help people get down to the cafeteria as well as to have the opportunity to offer assistance to those who need it. Also dispensing medications is a very critical time when those who are working need to be able to be focused, get the medications lined up and dispensed in an appropriate time period. And that happens anywhere from three to four times a day. So it can definitely be times in which the people are hands on right there with the residents and obviously that’s what you want. But it also is difficult because I know that you have questions and would like to have them answered as soon as possible. So even just asking the question. When is the best time for me to reach someone? To talk about a concern or to ask a question, or even just to check in on how things were going. Realizing that there’s a lot of paperwork involved and care team members are often needing to take notes and to really be engaged with the residents is realistic. And that does make a lot of sense. Deborah also addresses the concern of having different people, caring for your loved one. I know this was a challenge for us as we were looking at memory issues. Having that consistent person who knows our loved one and was really able to fill in the blanks when Dad wasn’t able to do that for himself was really important to us. In a longterm care facility, obviously, staffing this is a challenge always, but at this time it’s even more a challenge for many of the locations. Turnover is an issue and so obviously their goal is to try to keep as consistent people as possible, but they have to be able to train and bring in new staff, whatever that that is required. That means there can’t always be consistency. For your loved one and the team members. People who are in a longterm care facility, often have a care plan. And that care plan has a lot of different things on it. And Deborah addresses in her book as well that not everything on the care plan can be implemented every day. Obviously the goal is to have it regularly scheduled and to be able to have them meet that care plan goal daily. But there are days when things happen and they’re not able to do that. Understanding that your loved one might have a bad day. They might not be feeling well so a bath might not be given on a day when it’s initially scheduled. Or if there’s an emergency in the facility, it might also cause a hiccup in that care plan implementation. So understanding the care plan. Checking up on how frequently it is being facilitated, but at the same time, understanding that there are times that those things are not going to happen. I thought the misconception of being the squeaky wheel and making sure that you’re complaining and having them know who you are was interesting Obviously, making your concerns known is important, but it’s also important to do that kindly to do that with the appropriate people from the person who’s interacting with your loved one that you’re concerned about to the manager, on up the chain as needed. So just remembering to start where you can, and obviously all of us respond better when we’re spoken to kindly. And so it doesn’t take being a squeaky wheel, rather it takes probably more asking questions. Being able to understand what’s happening and sharing your concern. If you have a concern, once you understand a little bit better. On the other hand she has, I mentioned, that some people are concerned that if they complain that the staff will be unkind to their loved one. And I really appreciated her perspective on that is that team members, they’re really attached to the people they’re caring for. They spend a lot of time with them and that frequently they find that they might just dislike a family member, but they really do care for the person that they’re taking care of. And so it’s not a concern to be worried about. One thing that I thought was really helpful in her misconceptions as well was statement number eight, now that they’re in longterm care, my loved one is going to improve or get better. Otherwise known as I expect the staff to work miracles. I can see as a staff member that would be really concerning and frustrating in a lot of ways. But oftentimes I think we do feel like now that they are getting care, more consistently that we would expect to see improvements in their overall health. And that can be true at times, if they weren’t getting good nutrition. Or they weren’t having consistent stimulus or socialization. But overall, we have to keep in mind this is the highest level of care. We’ve moved to a longterm care facility because the need is that significant. And we are not looking to see an improvement overall in the person’s health. Rather, we are understanding that they’re in their final years and that aging will continue, possible progression of disease will continue. They will be cared for, but at the same time, it does not mean that their overall health will be improving. As I mentioned before, people who are in long-term care have care plans that just lays out expectations of what that person’s individual needs are. Along with the care plans, usually are care conferences that are scheduled regularly. To review the care plan and check in on how the resident is doing. As a family member, we often go in with an expectation of having the doctor there, having a long conference with a lot of detail of what they’ve been doing, how they’re eating, what their schedule looks like daily, all of those types of things. We have to understand that the conferences from the perspective of the long-term care facility, meet a different purpose. They do want to establish and have a conversation with families to allow them to understand what’s been happening, but honestly, they’re looking to establish a baseline. To be able to give the staff an idea of your loved one’s health issues, their medications, and overall disposition. The care team members are learning about your loved one’s particular habits and care needs. And really, this is just an opportunity to kind of review some of those things. The medication will be reviewed and any recommendations for changes will be reviewed but if a doctor is present, it will be less than 10 to 15 minutes and overall the family members are really just getting a, kind of an overview. So don’t expect the detail or a lot of individual information to be happening in the care team meetings. I think it’s difficult because the shift from being a family caregiver, where you were hands-on involved in every little thing with your loved one, when you reach a point in which you place them in a long-term care facility, you have to make a shift in your position and you move out of the person who knows all of these things and controls all of these things for your loved one. And you move into a place of just being a support to them, not having that hands on ability to control these things. That can be a difficult transition for some. It might also let you know that that’s not the right fit for you. So understanding that again, long-term care placement is because a person’s physical needs have reached a level in which they are needing a lot of care. And as a family member, you might have found yourself feeling that you cannot meet that need any longer. So that means you have to let it go. You have to give it over to the facility and the care team and allow them to do their job, meeting those needs. And not be quite as hands-on and actively involved in the care of your loved one at that point. Understand that your role has changed and be able to respond to that. I hope that you found some things helpful today, as I’ve talked through some of the content of Deborah Bakti’s book, Now, What? Managing the Emotional Journey of Long-term Care for Families. Lots of great information, easy read, great resource for you. If you’re finding yourself in a place where you’re needing to make that transition, I really do recommend that you get your hands on this book. Do some soul searching, thinking through what this would look like for you and your family to make that transition. So much is involved in needing to do that. And again, sometimes it happens because of a crisis. And we’re totally not ready for it, but if you have an opportunity to prepare, and you’re thinking that this might be where you’ll need to go as a family. I highly recommend you start having those conversations. Understanding what options are available to you in your area? Asking the right questions, finding the place that’s a good fit for you and your loved one. And then really understanding what that transition’s going to look like. This can be a really difficult time, definitely a time of high emotion. A lot of grief so I recommend, that you take a look at Deborah’s book and start to think about those things and process through the grief that’s coming. And make that transition as easy as possible for you and your loved one. I hope that you found this content helpful today. I would really appreciate it if you would leave a review. Or even subscribed to our podcast, it really does help others find the podcast. And we would love to be able to share the hope. Thanks again for joining me today. And remember A Season of Caring Podcast has been created for the encouragement of family caregivers. If you have legal, financial, or medical questions, please consult your local professionals. And take heart in your season of caring.

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Meet Your Host

Rayna Neises, ACC

An ICF Certified Coach, Author of No Regrets:  Hope for Your Caregiving Season, Podcaster, & Speaker, offering encouragement, support, and resources to those who are in a Season of Caring for Aging Parents.

Her passion is for those caring and their parents, that they might be seen, not forgotten & cared for, not neglected.

Rayna Neises, ACC

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