Ep 22 - Moving Into Aged Care - The Emotional Impact

When someone we care for moves into aged care it can have an impact on us as well as the person moving in. This episode identifies some of the ways this can surface, and tips for dealing with the challenges ahead. 

Featuring Sally Fleming, a Nurse Practitioner specialising in palliative care in an aged care setting.

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Transcript

Ep 22: Moving Into Aged Care – The Emotional Impact

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 – The Emotional Impact

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 Nurse Practitioner with a particular interest and experience in Aged Care. We're going to be discussing Moving in to Aged Care – and how what kind of emotional impact this can have on everyone in the family. Welcome Sally.

Sally

Hi Denise

Denise

Sally, thanks for joining us today. Often, it can be difficult for people to accept the need for going into long term care. And that can make it a little bit harder for both the person who's moving into care, and perhaps a family member who's staying at home.

Sally

Yeah, look, that's right. And I think, I've been working in and around age residential care for over 30 years now. And I think I could probably think of half a dozen people who really, really wanted to come into aged residential care. The rest have moved in, because it's been necessary because of things that have happened in in their lives and changes in their health, or their circumstances. And so, you know, as with everything that you would really rather not be doing, it takes an adjustment, and it takes a bit of time to get your head around the fact that you that you need this, and then to accept it.

Denise

Do you think sometimes it's going to be hard, certainly for the person who has to move into aged care because there’s this whole new, it's no longer their home, and they have to adjust to living somewhere differently. But I'm guessing it's also hard for the person who has to let their loved one go into aged care.

Sally

I think the first thing that we should think about is the losses that people experience when they need to move into a long-term care facility. They're losing the connection with their home, they’re exiting, perhaps a home that that they've spent the majority of their life in and they're moving into a room. So they have to choose a very few possessions to take with them and leave so much behind. They might have a spouse that they are separated from, they might have neighbours and community that they're separated from, and they might lose their sense of purpose and the things that they used to be doing at home, whether that be, you know, tendering a veggie garden, or even smaller tasks, if they have been unwell. So that there are enormous losses that people have to deal with. And it is the same for the for the spouse as well, they might have lost their companionship, they've lost their sense of purpose, they’ve perhaps being caring, and looking after that person. So there are lots of losses everywhere and lots of grief associated with those losses.

Denise

So it's good really to just acknowledge that and allow that, you know, allow yourself to feel that grief and that sense of loss. This isn't what I planned, we were going to grow old together, we were going to stay in the house together. And you know, it's perfectly normal and acceptable to have a period of grief, and to deal with it.

Sally

That's right. Often, relatives have a sense of guilt, that feeling that they have let someone down, that they've failed them because they're no longer able to look after them, for whatever reasons. I know, I promised my mother that she would not go into a rest home. She made me promise and I did. And I let that down I, I wasn't able to prevent her from going into a home. So yeah, there are lots of feelings. But you know, there are also people who I have known who have felt a great sense of relief that their person is now somewhere where they going to be safe. Where they are going to have their needs met more easily, that the struggle that they were experiencing at home is now over. Sometimes there can be tension between relationships when it's a care relationship rather than a partnership. So, again, all sorts of feelings.

Denise

And Sally I think it's great that you acknowledge that you, in fact, made that promise to your mum, and felt that sense of guilt. Because, you know, as nurses, we're well aware that often people make that promise, without any knowledge of what caring for somebody later in years might look like. And you have a lot of that knowledge and experience. And yet still, you weren't able to do that. And I often think the intent of our promise, is that I'm going to do the very best I can by you. And actually, what it comes down to in the end is the very best for that person is not to remain in their own home. How did she go in the end Sally? Did she take long to settle in?

Sally

Oh, gosh, probably had the best year, she lived for a year. And we had the best time. She was probably the most well, for that whole period, died beautifully. And she was someone who swore black and blue to ‘take me out of the house in a box. I'm never going to go into a into a home of any kind’. She made new friends. She had a great time. It was a really, really positive experience, in many ways.

Denise

And didn't actually hold a grudge against you for apparently, speech marks “breaking your word”.

Sally

She had a little bit of dementia. So she might, she might have forgotten about our arrangement. But I think that became a moot point because she was happy the last year of her life. 

Denise

And Sally, we often do see people's health improve when they move into care, don’t we, because their food needs are catered for, they’re warm, often their medication is a little bit better controlled. They have people who know exactly what they're doing around helping them to walk or move around in the bed or have a shower. So those care needs are more easily met in a facility that's designed for that purpose.

Sally

Yeah, that most definitely can happen. It really depends on what is the reason for the person going into the long-term facility. And often they're coming in because they're very unwell. And so there may not be much scope for them to improve too much. But they might just have that period, where things are just a little easier. And, yeah, I think especially patients who have been involved with the hospice, they will have, in most cases had, you know, quite a bit of support provided at home. And so, when they need to come into an aged care facility, they're generally pretty unwell and pretty tired, and just needing care and support. But you’re dead right, some people do pick up a little bit of more activity for a short period, or are just a little bit more enjoy that food for a little while. That's not always the case. Some people don't do well. And it's generally because they're very sick. And we are kind of expecting that decline. So that it does depend.

Denise 

Yeah, that's a good point. Sally for the person who is staying at home, that's quite a transition for them too isn't it?  Because perhaps, you know, they had someone to care for and now they've only got themselves. They’ve perhaps got to refigure you know, preparing meals How do I bother cooking when it’s just for me. So that's also quite a transition for them. 

Sally

Oh, absolutely. You've got to realign what's motivating you today. You know, I could imagine if my whole day was around, caring for another person from the moment I got up and until I went to bed and then that person’s not there, I've got a lot of time to fill in. I've got a lot of gaps in my day, and how do I fill that, and it might be that some people have got loads of things that that they can get on and do with, but other people might find it quite difficult to be motivated, that they've lost that sense of purpose. And they have trouble finding something to replace that. And, you know, that might be getting in the car and going into the facility, or they might just be a little bit lost and quite lonely, and, you know, at risk of depression. It's just important that people are aware, to take notice of how they're feeling, whether they're sleeping, just what they're thinking about, and to look out for signs that they're having difficulty adjusting to such a life changing event.

Denise

And I guess, you know, acknowledging that they're allowed to have that sense of loss because, especially if you're talking about a couple, they were expecting to spend the next 20 years together, and now that person’s gone. And, you know, actually there is a loss, isn't there because they might still be here on this earth, but they're not with me in my home. So, you know, we're allowed to grieve that. But it's as you're saying, taking note of is perhaps that grief becoming overwhelming? Do I need to talk with someone else about this, and about how this is impacting me? 

Sally

Absolutely. I think too, we need to be aware of even though the resident is not at home, they can still put quite a bit of pressure on a relative who is at home. Because even though there are there are staff in the facility to provide care and support, there are never enough of them. And as willing and dedicated as they are, they will not be able to provide that special one-on-one care and support that the resident has been getting at home. So if the relative arrives, there can be a lot of pressure on them from the resident telling them all other things that are not happening, the way that they want it to happen, or they can push some of their anger, or their grief, their frustrations, everything that they're feeling about this adjustment, on to the relative and that can be difficult as well.

Denise

How do you recommend dealing with that Sally? I'm guessing talking to someone else could be helpful. 

Sally

Absolutely. Just listening to the resident, finding out exactly what the problem is, and then talking to people. And, I've talked about identifying the most appropriate member of the team, whether it be a clinical manager or unit manager, whatever the term for the sort of senior nurse in that part of the facility that the resident is living in, and being quite clear about communicating with that person and sharing the concerns so that A) the facility are aware of the problem, and B) they can put a plan together to try and alleviate it. It's all about communication, and our expectations need to be realistic. An aged care facility, regardless of how well trained their staff is and how well resourced they are, they will not be able to, to sit beside someone, you know, for long periods of time. They won't be able to be responding to a bell in you know, 30 seconds. It does take time to get from one end of the unit to another. So, people need to sometimes adjust their expectations, especially if they've just come from a hospice inpatient unit, because there, there are very high ratios of staff to residents. And you know, the speed in which the staff can attend is very quick. And that's just not possible, either in a in a public hospital or in a long-term care facility hospital. So, we just need to be sure that the issues are things we can correct and work as a team to try and relieve those concerns. And, you know, hopefully, as a resident settles in, and they get to know the staff, and they get to know the routines, they become much more accepting, and just adjust better and not quite so reactive when things are just not going quite to plan.

Denise

So, it's a little bit about letting them vent if they need to vent, letting them know they’ve been heard, but not necessarily trying to fix it, but let it just be. Because sometimes, you know, if we're trying to fix it, we can kind of ramp things up and make it a little bit worse even, can’t we? 

Sally

Yeah, I think, is the term choose your battles appropriate? It’s sort of like there might be some things that that, you know, you can just let slide or you keep an eye on it yourself, as a family member, but there might be some concerns, that definitely need to be addressed. And, focusing on the very important things, I think is a good idea. 

Denise

So, it's perhaps about identifying key concerns that need to be addressed, and just supporting them to be heard on the ones that aren't perhaps quite so important. Sally, the other thing that can happen, of course, is that, you know, the people we're talking about are moving into aged care, usually, because their health is deteriorating. And that's going to start and have another impact in other ways, isn't it where they might decide to, you know, not seek treatment any further. 

Sally

Yeah, that's right. And that can be very hard on families. And I think probably the most common and the most difficult concept for families to accept, is when people lose their interest in eating. With a lot of conditions people, as their disease becomes more advanced, will lose weight. And we try very hard through their disease journey to pack in nutrition and get lots of calorie and fat into their diet. And often families are very involved in this to try and sustain their weight and their energy. So that they can live as well as they can. But people will get to a point, and this is often after they've moved into aged residential care, because of their advancing disease, because of their frailty, they'll get to a point where they just have no appetite, no hunger, no desire to eat at all. And it can be really, really tough for families to accept that and sometimes eating becomes this emotional focus of a visit. And so, a family member will just spend the whole time that they’re there, trying really hard to encourage the resident to eat. But it's hard for families to understand that this person actually doesn't need food anymore. Their body is not going to be able to metabolise it, to absorb it, to do what, what everybody wants it to do, and that’s provide energy. And it is a very difficult concept for people to let go of. I know of a situation where an elderly woman with a little bit of dementia, but some other chronic illnesses, was reaching the end of her life. And she didn't eat a morsel of food, not one single bit of food went in her mouth for six weeks, up until she died. She did drink probably a good half, to a bottle of lemonade every day, and that probably would have helped her. But one of the daughters, a very intelligent woman could not accept this and blamed the facility, the porridge is too lumpy, the soup was too salty, everything was about the food. And then when she began to bring in all sorts of foods that she had prepared, even then, the resident turned them down, and she just couldn't accept it. And it got to the stage where when the daughter was coming through at lunchtime, to help this woman with her, her meal the resident just rolled her eyes at that, you know, to say, ‘oh here we go again’, you know. So the quality of their visit was affected. Because the difficulty that this daughter had accepting that it was a normal part of the dying process, for this person to lose their desire to eat. So, it's very complex and quite challenging.

Denise

And that is really understandable, isn't it? Because we do equate feeding people we love with helping them get better. And so that's quite a challenge to accept. And it can feel deliberate that this person is choosing not to eat when actually, it is their own body saying we can't do this anymore.

Sally

So, we just need to change our focus from goals around nutrition to goals around enjoyment, you know, what little flavours might, that person like. A chocolate button might provide more taste and enjoyment, than, you know, a carefully prepared, nutritious meal. Very small amounts of food, good flavours. That's what becomes important rather than the nutritional value. 

Denise

I want chocolate. That's my last meal. I want chocolate. And that's it, because some people might have always enjoyed salty and savoury and others have enjoyed sweet and rather than it being something nutritionally complete, what's enjoyable for them?

Sally

Thing is though, sometimes those desires for sweet and savoury switch around and all of a sudden, someone has changed, and now they want something completely different. So, keep an open mind.

Denise

And be prepared to try something different. And Sally, I've heard you say before too that, when we might feel as a family that someone is giving up. In actual fact, it might be that they're taking control.

Sally

Yeah, I think again, let's remember that the people that we’re caring for are experiencing advancing disease and they're approaching the end of their life. They've lost an awful lot. Their energy is depleting, they’ve only got certain reserves and they might want to be in control of that. They want to save their energy for times when they want to use it. Fatigue is a very debilitating condition. And people just don't have the energy to carry on doing those, sort of normal, routines. So, if a family member comes in at, you know, 11 o'clock in the morning and someone’s still in their pyjamas, or still on their bed or, or if they were going out for a trip on the van or something and they're not anymore. Yeah, I think they just need to keep an open mind and think that there might be a really good reason for that. And just not be too focused on expecting people to continue to do what they have been doing. Because they just might be wanting to rest. They just might be choosing to start to withdraw from those sort of things that they were doing. And it's not necessarily giving up. It's just being able to make choices about how they want to spend their day.

Denise

So, when people are approaching the end of life Sally, and it's in a care facility, what's going to be different about that compared to perhaps being in a hospital or being at home?

Sally

The first thing that we would refer to is those shared goals of care, or those conversations and those decisions that we made earlier on about what people want. And if that has been that the person wants to remain in the aged care facility, that's their choice, the place that they want to die, then it's all about respecting their wishes and following that plan. Everybody who is unwell, and who is reaching end of life will have a different kind of journey. But there are things that we see that help us to recognise that a person is reaching that last stage of their life. And the typical things that we see in the population that are living in aged residential care, might be that they are now spending more time sleeping, napping in the chair, sleeping on the top of their bed, than they are awake. They lose their interest in eating and they're eating less and they're drinking less. Sometimes they might have more recurrent infections that have needed to have some antibiotics. And we find that those antibiotics or treatments for sort of short illnesses are not effective like they were earlier on. People might start to reduce their function; they can't walk as far. They might start to develop problems with their skin and pressure areas, or bed sores they used to be called, become more of a problem. People start to have difficulty swallowing and even taking their pills becomes a problem. So they’re the typical types of things that we would see that might make us just prick up our ears and think, gosh, you know, this person just might be moving into a dying phase. And you know, that can sometimes be a couple of weeks or two or three weeks before they actually die. But it's a change in their presentation. So, what do we do about that? We follow the plan, we follow what we know the person wants, we follow what we have learned from the family about what's important to the person. We don't move people out of the aged care facility, either to a public hospital or to a hospice, for end-of-life care. And, and that's because it's important for the resident to stay in what has been their home, and to be cared for by people who know them. We don't move people to hospice, even if they've been involved with the hospice, through their illness. Hospice will come to them, that's where our team becomes involved. And we support the aged residential care facility to provide end of life care for that patient and the family. And for the family it's a much nicer environment for the family, to be visiting what has been that person's home. 

Generally aged residential care facilities, have completely open policies for visiting when families are supporting loved ones. Again, it's important to take care of themselves and to perhaps set up that roster that you talked about Denise and taking turns in being with the patient when they are dying. It's great to talk with the staff about how you as a family can participate in that care as much and as little as you want to. It varies an awful lot, depending on how families want to be involved. So sometimes, a lot of the time actually, if someone has been sitting alongside a family member, and they want to go home, and they say “Do you think it's okay for me to go home and, and have a shower and a two hour sleep?” And that's really, really difficult for the staff to actually be able to give you an answer. And it's very difficult to predict when someone is actually going to die. Things can sometimes take a lot longer than we expect. And they can also happen very suddenly. And I always say to people, “how important is it to you that you're actually here when your mom dies?” And if it is very important to that person, well then maybe they should stay. But it's not important to everybody.  It's absolutely fine to leave. You know, in fact, some patients prefer to be alone when they die. Others might have expressed that they don't want to be alone. So it's a really good thing for families to talk about before that time comes. But you know, it's okay. It's absolutely okay to do what is right for each person.

Denise

My experience over the years has certainly been that people seem to have an incredible ability to wait, against all odds it will seem at times, for somebody to be there with them. And equally you and I, have both seen situations where family had been with somebody around the clock for days and days on end and in the few minutes they're on their own, that's when they’ve died. And it's as though this is something they have had to do on their own, not with an audience, not with their family with them. And I've always sort of felt that if somebody needs me there, they'll wait for me. But I like to let people know, and I like to say “Well, okay, if you're going to go home, that's fine, we'll let them know that you're going to be gone for a couple of hours, and when you'll be back, you know they will make their decision as to what they need to do.”

Sally

And I would encourage family members to ask questions, if there's something that they're worried about, or something that's happened. Say, for instance, like the little syringe drivers, the little pumps that hold a syringe that deliver medicines, when people can no longer swallow. You know, there can be a lot of misinformation and mystery around the medicines that we use at the end of life. And sometimes people harbour regrets and concerns well after their relative has died, because they haven't got the right information. So, we don't want people to be sitting there being worried and not feeling like they can ask questions. Because when they get the right information, you know, nine times out of 10 they're immediately reassured and they're not at risk of having these ongoing regrets as they move into that bereavement and grieving process.

Denise

And as we said earlier, keep talking, communicating. If you have a worry, ask about it. And if you feel that you can't ask, perhaps you might have a friend who could ask on your behalf, or you might have someone else you can ask to get that advice and knowledge from but keep the communication open. 

Sally, thank you for today. It's been a wealth of information that I'm sure people will find helpful. So, thank you for sharing that with us.

Sally

My pleasure.

Denise

And thank you for joining us today. This podcast was 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 otagohospice.co.nz/education