Ending Life Well. A podcast series for carers
Ending Life Well. A podcast series for carers
Ep 21 - Moving Into Aged Care - Practical Tips
Having to transition into aged care is a challenge many of us will face. We explore very practical tips and ideas to make this transition easier.
Featuring Sally Fleming, a Nurse Practitioner specialising in palliative care in an aged care setting.
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Ep 21: Moving Into Aged care – Practical Tips
Kia Ora and welcome to The Ending Life Well Podcast. This podcast series for carers focuses on advice and practical solutions for carers who have been thrown into the deep end looking after a loved family member or friend in their last days, weeks, or months of life.
Our episode today is Moving Into Aged Care – Practical Tips
Denise
Hi, I'm Denise van Aalst, a senior palliative care nurse and educator at Otago Community Hospice, and today I'll be talking with Sally Fleming, a Palliative Care Nurse Practitioner with a particular interest and experience in Aged Care. We're going to be discussing Moving in to Aged Care – some of the practical tips to make this transition easier. Hi Sally.
Hi, I'm Denise van Aalst, a palliative care nurse at Otago Community Hospice. Today I'll be talking with Sally Fleming, a palliative nurse practitioner with a particular interest and experience in aged care. We're going to be discussing moving into aged care, some of the practical tips to make this transition a little bit easier. Hi, Sally.
Sally
Hi, Denise.
Denise
So Sally, we've used the term aged residential care. Long Term Care is another phrase isn’t it, because sometimes people going into care are elderly, over the age of 65/70. Other times it's people who are younger, but who are needing long term care that just can't be managed in their own home.
Sally
Yeah, that's right, that the terms are interchangeable. And it's just historic, that residential facilities in the most part, have their primary occupants have been older people. But you're right more often, now, there are for a number of reasons, younger people that need that ongoing long-term care and support.
Denise
So, we're going to probably use those terms interchangeably, as we talk today. But really, what we're talking about is a facility, not an acute care hospital, but where somebody resides, they live there, but have a degree of support and care from trained staff.
Sally
That's right.
Denise
So Sally, when people are making that transition into long term care, there's quite a few practical things that can make that a little bit easier to manage. Isn't there?
Sally
Probably the first thing that needs to be tackled is actually coming to terms and accepting the need to move into long term care. Nobody wants to do that. Everyone would prefer to be in their own home, to be with their loved ones, to have their connections that they had before. But for whatever reason, this transition into long term care is necessary. So that's the first and perhaps the hardest issue to deal with, when you're transitioning to long term care. Then there’s choosing a facility. There are different levels of facilities, rest home level care or hospital level care. I think hospital level care is an unfortunate term because it indicates that you're moving into a hospital like the Dunedin hospital, but it's not quite the same. And we might talk about that a bit later. But you need to choose a facility and there are different people are attracted to different things. My feeling is that the I take more will notice of the atmosphere of the facility. Look at the residents, do they appear happy? Are the staff happy? To me, this is much more important than the décor. You need to trust your intuition, your feelings. And there is practicalities. You need to think about, you know, who might be needing to visit? What part of the city is most practical? Is it okay for someone to be up on the hill where they might enjoy the views? Or do they need to be down on the flat where they might be able to, to get around a little bit more. So, there are some practical things about choosing a facility.
Denise
And I'd agree because you might go into a place, it might be really a little bit rundown, maybe a little bit tired in the decor. But that's perhaps because they have focused their expenditure on the staff and the activities and you know, the non-tangible things, but the things that have a huge impact on how much you might enjoy staying there, as opposed somewhere else might be very new and very flash and look great, but not quite have the same warm feeling or connection between staff and residents.
Sally
Well, that's right, and you know what are the needs for that particular person that's moving in. If they're going to be someone that isn't going to be too enthusiastic about joining activities, or getting out and around the facility, if they're going to be focused on staying in their room, then the room becomes more important. Is there enough space for them to have what's important to them? Do they have access to outside, have they got a good view, those sorts of things might become important. Other residents don't spend hardly any time in their room other than sleeping there. So their room is less important.
Denise
So there's some really good questions that you need to be asking yourself before you're even looking at the facility. What are the things that are actually going to be most important, whether it's I'm choosing for myself, or whether I'm choosing for a family member? What are the things that are actually going to be important to them?
Sally
So, gaining information. There is an awful lot of information and paperwork that needs to be processed when someone moves into aged residential care. Normally, that is the spouse or the children of the person that is processing all of that information. It's really helpful if you can get that sooner rather than later so that you've got time to actually go through it. And from that information, a lot of questions might be generated. So, things that I think are very important is understanding who is the person that the family or the resident would go to in order to communicate with. Who is the key person to talk to about anything that you need, concerns that you have, teething problems, things that are not working out for you. It's just important that you understand the chain of communication, so that you're talking to the right people. It's important to understand who the doctor is going to be. Is it the house doctor? Or are you continuing with a previous general practitioner? When would that doctor be available? What are their clinic hours? Whether they come into the facility routinely? And what would happen if the patient wasn't so well? And what's the access after hours to medical support? All facilities have slightly different approaches. And it's just really good if people understand that. It's important to understand visiting hours or visiting access. Once upon a time, this was just open-door policy, but COVID has changed this. And it might be that visiting is slightly more restricted now, or if a COVID outbreak did occur, then you need to know what to expect at that time and how visiting might be restricted.
Denise
Sally, you mentioned a little bit earlier about the paperwork that's worth getting in advance to start completing. In New Zealand, where would they get that paperwork from? From a care home? From a social worker? Where do they get the paperwork they need?
Sally
Okay, so there's various types of paperwork. So, everybody who was going into an aged residential care or long-term care facility needs to be assessed by the NASC assessment or Care Coordination Center. And that assessment will determine what level of care that they move into and will determine what stream of funding the person may or may not be able to apply for. If someone is applying for a residential care subsidy, there's quite a document that needs to be completed and that is submitted to WINZ and usually, either the needs assessor or a social worker will provide that information. It's normally provided before someone actually gets to an aged care facility. But you might need help, if a person's finances are a little bit complicated, they might have a spouse with a home, they might have investments, there might be trusts. And that can be complicated, and some assistance might be required to complete those documents.
For the aged care facility themselves, again, there's a different range of documents. They will need to sign what we call a service agreement. And that is quite a lengthy and at times a legal sounding document, but it is important that everybody understands what is covered, what the aged care provider will provide within the subsidy or within a private fee, what other things might be considered to be premium costs or add ons. And it's just very important that everybody understands who was responsible for what. That’s again, quite a lengthy document. Then there are all sorts of things that the nurses will want to complete. They'll want to know about the person, they want to understand what's important to them, they want to know about their background, what makes them them, they want to know about their medical history, and all about what they like to eat, and all that sort of information that gets gathered over the first couple of days that people move in to a long-term care facility. And that information will then get turned into a plan of care. And that will help everybody give each resident their individualised care and support.
Denise
Right. So I mean, these places, they really do want to know, don't they? And I mean, they do an amazing job caring for our people that can't manage at home, and they really want to have that information because that helps them do their job well.
Sally
Absolutely. But like, like any kind of health system, I don't quite understand why. But I think people might need to be a little bit prepared to repeat themselves sometimes. It takes time for information to filter through, it takes time for documents to be completed and plans to be put in place and well understood by everybody. So, be patient don't worry about repeating yourself. When a family member has been cared for by the rest of the family at home, then those carers at home they have all of the secret information that you know works and you know, helps people and if you can share that with the care team, it gives them a great start and helps them build that relationship with the resident a lot quicker because they're doing what we know works for the resident.
Denise
I really like that point that not to be bothered about repeating things you know, that's okay. And if we think about the fact that you and, as you say, maybe some families so it might be two people, maybe four or five, have been caring for somebody around the clock for a long time, somebody that they already knew very, very well, is now going to where there are three different people on the three shifts, you know, that are caring for this person along with the other people they're caring for. It isn't going to happen overnight, that is going to take a little bit of time for them to absorb and get to know this person. So repeating some of that information is going to help everybody.
Sally
Yep, absolutely.
Denise
Sally, what are some of the other practical things that people can do? I know, one of the ones that you've mentioned to me in the past, is making sure clothing is well labelled, I mean, it seems such an obvious thing. But I can imagine if it's not done can cause some real grief.
Sally
Oh, absolutely. Laundry systems, I don’t think it matters how efficient they are, laundry will go missing. But hand on heart, I can almost guarantee it will come back again, it just might take a little bit of time for it to move around until they find the right owner. My experience is the better that the clothing is labelled, the less likely it is to go missing. And even if it does go missing, the quicker it will return back to its rightful owner. I've seen all these different ways of clothing being labelled. The most common is probably a laundry felt pen, with people putting an initial or a name on to the tags inside clothing. It's quick and easy, but it does wear off. And it's not a good long-term option. But when I when I was in that situation, and I was supporting a family member, I did that initially, while I was getting some printed labels made available. And I would have my supply of labels and some cotton and a needle and some little scissors in the top drawer. And when I went to visit, I would just slowly add a few labels each time to articles of clothing. And it wasn't a great big arduous job that I was trying to do all at once. Also, precious pieces of clothing, hand knitted woollens, my advice would be to take those home and to wash them. Put a little basket inside the cupboard with a label for ‘handwashing please’ and just take it home because it is heartbreaking when laundry does inadvertently get popped into the wrong laundry hamper and then goes through a hot wash and comes out not wearable anymore.
Denise
Sally I really liked your idea, because sometimes that's one of the things isn’t it, if you're going to visit somebody who's now living in care, it’s you know well, what do we do? What do we talk about? Do we sit here in silence and actually having a wee job to do like, just each time you are going, stitching in a few more labels is something, it just gives you a little purpose, it’s something to do while you're there.
Sally
Absolutely, yeah, tidying drawers is another thing. Again, I used to be quite frustrated that when I would open a drawer to find something, all the clothes were all muddled up, you know, and I just used to quietly as I was chatting away just to reorganise them. And that kind of was my subtle way of saying that looking after, my relatives, clothing and possessions is important to us. So I was trying to set the standard without, having to actually draw it to people's attention and tell them and it didn't take too long. And I did notice that people began to follow suit.
Denise
What are some of the other things that are useful for people to gather together to take with them when they move into long term care Sally?
Sally
Oh look anything that is important to people. So, you know the most obvious things is bits like you know photographs, pictures you know, things that they've had in their in their home, and their bedrooms that that will be familiar and bring them comfort. Sometimes the facilities might use pillows with wipeable surfaces from an infection control point of view. And so supplying your own pillows that might be softer and more comfortable, that, you might be prepared to sacrifice and have to replace if they get soiled or damaged from laundering; things like duvet covers, rugs, things that in and around the home that have brought comfort to people. People sometimes in their bookcases at home, have books about the railway or motor cars or things like that, that have been an important part of someone's past. And, you know, when people are getting older and frailer and getting closer to the end of their life, reminiscing is important. And can be something to focus in on conversations that can be someone that highlights what's been important to them in the past and, and helps the carers get to know them a little bit better.
Denise
Yeah, and again, that's as you’ve touched on, it’s something then to have a conversation about isn’t it, to look through a book. And I'd imagine photo albums because we can only put so many photos on the wall. But photo albums would be again, another way of having those stories, you know, generating conversations and getting to know somebody for the staff.
Sally
Yeah, anything that's got meaning for that person. Technology is becoming increasingly important. iPads, Kindles, audiobooks, all important little pieces of technology now that can help people to either keep their minds occupied, or to connect them with other people around the world, that are important to them. Also, I think a great addition to a bedroom, if there was room, is a little fridge, just so that family members can drop in just little bites to eat, you know, oysters might be in season, or someone's picked up just some little titbit. And it's good to be able to keep it close to home. I mean, often facilities will have a resident fridge, where those bits and pieces can be kept in the communal sort of kitchen. But I think it's nice to keep things close to home. And then it's, the resident can get it themselves nice and easily if they're able.
Denise
What about, say a comfortable chair or something that they've liked at home? Or is it better to be using the facility furniture that is perhaps better designed for ease of use,
Sally
I would consult and talk with the team about that. Some people will much prefer and be much more comfortable in their own furniture. And that might be absolutely fine. But we need to remember from a health and safety point of view around moving and handling people. You know, if the chairs are very low, it can be more difficult for the resident to get out, and for the staff to assist them. So, there are many occasions I've seen people bring in their own furniture. But I have seen one or two times when family have bought in a big piece of furniture in and they're not easy to move around sometimes. And only to find that it really isn't suitable for ongoing use in that level of care. So, I would just be quite transparent and talk to the team around what the family is thinking, what the resident’s wanting, and just make sure it's the right choice for going forward.
Denise
I'd imagine there wouldn't be a huge amount of storage. So, would it be also helpful to consider like a little bit around seasonal wardrobe, you know, perhaps in summertime, taking away some of the heavy winter things and storing them elsewhere at a family member’s place and bringing them back again? Or do you think that there is usually enough room?
Sally
Yeah, that's not a silly idea. But I think aged residential care facilities are pretty warm most of the time. So that may not be such a problem when people are actually remaining inside, but definitely, you know, thick heavy coats and things could go off site during the summer, because space is a premium, there's no doubt about that.
Denise
So, one of the other things, of course, that can happen Sally, when people move into care, is initially at least, we are probably going to be wanting to visit and perhaps even feel like, well, we've got to stay there all day, because they can't be at home, so I need to be there with them. But that's not really sustainable is it?
Sally
Again, it varies. Sometimes, people who visit every day, become very, very tired. And visitors need to look after themselves as well. And sometimes the resident themselves needs time to settle in and to get to know the staff and hopefully to get to know and make relationships with other residents. Some people do move out and around the community of the facility and other residents, you know, mainly because they're very unwell don't, and spend a lot more time on their own in the bedroom. So, in situations like that it can put pressure on say a spouse to be to be visiting every day and to spend long periods of time with their relative. And it's not always the best idea. It's very tiring for the person who is visiting, and it can sometimes actually feel like it's harder work to be visiting all the time than it was to look after the relative at home. And it can hinder them from being able to do things that they need to do either in and around the home or out in the community themselves. And sometimes the resident actually needs a bit of time to themselves. So, I just think that that it's really helpful for visitors to have a think about what they need to do to look after themselves, what they need to do to maintain their homes and carry on with their life outside. And to have a talk to the staff and say, my plan is to come on Mondays, Wednesdays, and Fridays. And, just to be to be working as a team with the facility team so that they know exactly when you're coming and going. They know when they need to perhaps providing a little bit of extra support if you're not if the family is not going to be there. And it's just about putting together a plan that is going to be sustainable in the long term. Because the last thing we want to do is for visitors and family members to be wearing themselves out.
Denise
And I guess sometimes to you know, it could be a matter of creating a bit of a roster. I’ll go Monday, Wednesday, Friday, and someone else can go Tuesday and Saturday and someone else on Thursday so that, you know knowing that someone's there and checking in. But it doesn't need to be the same person all the time. Because you're right. When they're at home, you can potter around and get things done. Like get a meal prepared, get the fire going, you know, do a bit of laundry. But if you're spending all day, sitting at the aged care facility, when do you do any of the things that you need to do for your own self?
Sally
And when does the resident get a chance to close their eyes and have a rest? I think too it's you know, like sometimes I have heard a family member say that they go every day, because they're worried about their resident. If they're worried, they need to tell the staff what they're worried about. Because it might be that a really simple plan can be put in place to alleviate that concern and allow the, the family member to, you know, to take that time off.
Denise
And I think, too, if I'm sitting there all the time, you know, with my family member, and I'm thinking, well, I've got to come back because the staff just don't come in. So you know, I've got to be here all the time, because they're not, but in fact, the staff aren't coming in because I'm there, so they're not intruding. And if I wasn't there, the staff would be in a lot more. So that's where that having some communication, having a conversation, can stop false ideas and myths, concerns being raised that that aren't valid.
So, Sally often one of the things that people will notice being a little bit different if someone's going into aged care or long-term care from a hospital or from a hospice, it's going to be quite different isn’t it? The situation is different, the care, what's going on around them is going to be really different. Because this is effectively their home now.
Sally
That's right. So, when people are in hospital or hospice, they might see a doctor every day. They might have investigations done, bloods done, just checking in to see how people are doing. In an aged care facility, the GP or the house doctor will not see people every day. They're not in the building every day. They will have fixed rounds maybe once, maybe twice a week, depending on the size of the facility. If the patient had been assessed as stable, they will see the GP approximately every three months just like they would if they were living at home. But if they were more unwell and their condition was less stable, that might happen more frequently, but certainly not every day. The different facilities have different arrangements with doctors, and so their after hours, or their out of clinic hours accessibility, also differs. So, like I said before, it's important to understand that at the beginning.
Denise
For some people, you know, they might be in long term care, their health might not be so good, but, you know, things are still correctable, treatable, and it's worth visiting, going back to hospital, for others it might be ‘that's it, I don't want to go to hospital anymore. I just want to stay here and be kept comfortable’. So, there are discussions that need to be had.
Sally
Yes, absolutely. And planning for decline. What I mean by that is planning for episodes, where people's health is changing, and their condition is declining. And so, it's really important that the team at the aged care facility, respond in a way that is appropriate for each individual person. Everybody is different, everyone has different conditions, their individual circumstances, their level of frailty. Everybody is different, and everybody will want something that's slightly different. And some people haven't really thought about what they want or don't want. And, and that's okay. But some people have very clear thoughts about that. And it's just great to share that with the doctor, with the nursing team, and anybody else who's involved in that person's care, so that if something happened suddenly, and the person wasn't in the best condition to be able to express their decisions at that time, then we have a clear indication of how to respond. And you're right, some people will want to go back to hospital and have either investigations or to have some more intensive treatments, in order to try and get back to where they were, to try and get their health back before this episode happened. And other people will have just had enough of being in hospital, they're tired of being sick, and then getting a little bit better, and then getting sick again, and getting a little bit better, and they just don't want it anymore. And that is absolutely okay. And we can discuss and have a plan in place. So that we've got everything we need to respect their wishes and look after them the way that they want. That might be just purely about comfort. They might not want any medicines or any treatments to prolong their life, they might want to just be kept comfortable and be able to die peacefully in the facility where they’ve lived. And that's absolutely that person's individual right.
Denise
Sally, do you find if people have taken some positive steps and you know the things we've talked about, having familiar things around them, making a bit of a plan about going into care, that most people actually adjust very well?
Sally
Look, a lot of people find it almost a relief. That, you know, the whole idea about coming into a long-term care facility is overwhelming and frightening and lots of grief and loss and things that they have to cope with. But once they kind of settle in, there can be a sense of relief and it can be for family members as well. My observations is that people who have been able to accept that this is just a next step in their lives, and kind of try their very best to just make the best of it, try and find the positives in each situation, they just tend to be a little less anxious and a little more at ease. And it can be just a relief that have to just live that bit of life that they've got left. And it’s sort of not a fight anymore, if that makes any sense.
Denise
Yeah it does. Instead of everything being the battle about, you know, laundry, food, drink, heating, all of those things, they can actually just sit back and be a little bit cherished, a little bit cared for, and just be. And the family, I guess too don't have to be the carer, they're able to perhaps take that step back and be wife or daughter or son. And again, just go back to just enjoying each other's company without the challenges of being a carer perhaps overwhelming them.
Sally
Absolutely.
Denise
Well, thank you, Sally, really appreciate you being here to talk about this today. And thank you for joining us today. This podcast is brought to you by Otago Community Hospice with support from Hospice New Zealand. If you found this discussion helpful, check out our other episodes of Ending Life Well, a podcast series for carers. You can also find more resources for caring for a person who's dying at Otago Hospice.co.nz/education.