All About Palliative Care
00:00:00 – 00:05:14
I learned about palliative care about two months before my mom passed away after learning about what it had to offer. I was frustrated that I didn’t know about this type of care sugar palliative care focuses on improving the overall Wellness of individuals with serious illnesses in addresses both the symptoms and the stress of living with a chronic disease different from hospice or end-of-life care palliative care is designed to support the person with the illness as well as their loved ones. Palliate comes from the Latin word for cloak to palliate is to cloak or cover up the symptoms of an illness without curing it this meeting grew into the idea of alleviating or reducing suffering interesting. Yes to him. That’s the topic. We’re discussing today. This episode is brought to you by caregiver Chronicles and eight-week online course covering everything from diagnosis through hospice for that information. Use the link in the show notes. Welcome to fading memories a podcast with advice wisdom and Hope from caregivers who have lived the experience and survived to tell the tale think of us as your caregiver. Best friend with me. Today is another guest all the way from the UK Esther Jones. She is going to talk to us about palliative care today. So thank you for joining me Esther. Hello. I so you are a palliative care nurse in the UK. Is that correct? Well, I’m a I’m a palliative care psychotherapists over in the UK. Well, that’s very important. I I sort of deal with people’s emotional well-being wage. Families and people with dementia are people long-term conditions. Are you having to deal with emotional stuff more these days cuz you guys are in lockdown. We’re about to go into well as much as America’s done lockdown. Yeah. I’m you know, we’ve it’s been very very intense over here as I’m sure it has over there with lots of people in this country with terminal conditions have had their treatments withdrawn temporarily similarly. I’m sure to you those people that are vulnerable are being shielded they cut off from family and friends many people in care homes or in a second wave of locked down. So, essentially people I’ve come across living with dementia living with brain tumors. So on and so forth, you know being stuck in care homes with a fear of not being able to save the birth. Two people so it has it’s been a very anxious and painful time. Yep. So can you explain exactly what palliative care is because I was not familiar with the term or the service until February of this year twenty-twenty. So I’m a certain that other people are in the same boat. I was in office. Okay, well from my understanding on the UK site and I should know this cuz I do I lecture in death and dying as well. So but palliative it comes from the word laughing what I Latin words, in fact will I think it’s caliari which means to cloak and I think the thinking of it is that you cloak somewhat on this terminally unwell with care off basically in the UK that the hospice movement which is slightly distinctive palliative care, but the hospice movement emerged in the nineteen-sixties and was cut off. Made by women call Dame Cicely Saunders who was you know, really quite outraged at the level of end-of-life care that people were receiving. So it was a kind of wage, you know Revolution really kind of idea that people who have terminally ill didn’t just need physical medical care that they needed social care package who care and psychological care and she worked with this idea of total pain. So it was quite had these four quadrants and the idea being that Hospice Care would provide a space You took a stand alone or in a house to respond to the multiple needs of people that that were dying the where that that relates to people with dementia is is is that you know divorce is the long-term terminal condition people die from it. I think the difficulty fill even in the UK is that dementia is one of the barriers to access as actually receiving log It’s attached and hospice care in the UK. I think partly cuz it’s not explicitly termed very often as a terminal condition, which is so the whole package supposed to be scary is usually in the UK at least in Standalone buildings.
00:05:14 – 00:10:08
It’s usually they usually Charities it’s part funded by the NHS life, but mainly people are raising money. I make cutting their hair off growing beards running marathons, you name it and Palace and and you only can really need access hospice provision when you’re coming to the end of end of your life and you know, a consultant has said that there are no more treatment options. So that’s when you might be referred on to hospice provision palliative care is embedded in Hospice in hospitals to in the UK or you have stand-alone home. So the community palliative care services with palliative care nurses specialist nurses, you can access that the minute your diagnose the terminal condition. So even if you’re on treatment if you I mean probably the most obvious condition that that we certainly see is cancer. So even if you’re diagnosed with a terminal condition and you’re getting chemo and radiotherapy, you can still be accessing palliative care at the same time all the research Bears out that if you accessed a little early it might actually mean that you live longer because you’re still getting that quite a holistic care that is supportive both of the patients but also family members so it helps the contain people in their journey. I think it’s trickier though to access it with dementia because as you know yourself people with dementia off, Often really quite capable for a long time. It’s a very long disease trajectory sometimes, you know, Seven Ten Years it can be and so you can have that one very very able, you know appearing at the shops sell buying their groceries, maybe a bit model but you know cracking on and so I think ordinarily something with dementia probably is not going to access those Services right from the get-go in the same way that someone with cancer might so in the UK people tend to access social care when they’ve got dementia before they’d access out of care if that makes sense. We’ve got all these different runs in the UK and as I was saying to earlier lots of it, I think some of the gaps they can provision from the NHS or filled up by Charities doing all sorts of work. I think the biggest difference accessing package. Of care when your terminal illness is Alzheimer’s or dementia as you’re not undergoing a treatment as challenging as chemotherapy or radiation. Yeah, so it seems me have the social care. So we need to fix that gang would be too. Well. I I always Advocate to my listeners and my followers on the Edge media and I preached this almost Ad nauseam when you get a diagnosis of Alzheimer’s or dementia, first off most people have already known that something’s wrong page strongly Advocate people right then and there put together a team. You may be perfectly capable of handling the majority of your daily responsibilities and your personal care, but it it’s surprising how all of a sudden you and the person that’s your spouse for example are all of a sudden overwhelmed and now you’re trying to log To get the services and the help and that’s overwhelming and it’s just it’s all too much and people patch together various things. So I always suggest and the suggestion I just put out recently was is make a list of the things that you’re that you’re going to maybe need help with especially senior citizens, you know, get a housekeeper find the neighborhood teenager that can you know, do the yard work maybe an other elderly neighbor who is healthy they can come in and and do something social visiting so that you can take care of whatever else you need to take care of instead of sitting with your loved one and then your adult children can fill in holes here and there so make a list of what it is you do everyday and what did it and who you think could help with that? That’s my suggestion to people so that sounds a lot like your social care and but if we learn about Palliative care early on then when things become overwhelming the physical and emotional challenges of caring for somebody with alzheimer’s when you have to help them and help them.
00:10:08 – 00:15:03
You know, how like, my mom had to have physically been showered and she did not like that. So who is not it was a two-person job because she fought people off these are the kind of things that in my understanding somebody with somebody receiving palliative care. It would help in a lot of those respects cuz it will help the person carrying. It’s helps the person who needs the care in my my kind of on the right track there. You know, what you’re talking about is something that that we do as long as part of the offering of palliative care. So we call it Advanced Care planning. So the IDE Being that the professional palliative care nurse was sick with the patient and loved ones and work out a kind of this is what I want from care. This is what I don’t want from Cadillac changes as you know, I mean, it’s so changeable dementia and the experience of it. But but effectively a sort of a long-term proposition. I mean people even talk about how they want their money, you know, you know, so in other words people don’t you know, that’s not true. Some people don’t want to talk about it, you know to face your own death is is one of the hardest possible things but but the thinking behind getting palliative care in early is to be able to try name some of those really difficult, you know, and and fighting kind of issues and also it’s it’s about I think bringing families close to through honest conversation. I mean, that’s that’s part of the thinking behind it. And so we do have a job. Something called Advanced correct are planning, which would go on in the beginning. I think what happens in the UK If you go to a memory Clinic you get a diagnosis of dementia, you would be under what’s called a psycho geriatrician and that psycho geriatrician over here often refers on to either social care. I think generally they would care plan with you as well. So the social care team would plan with you, but that as I say is means-tested so you would you know, you might well be paying for it. But we also have something you probably know about the outside the society over here in the UK. We have something called the Alzheimer’s Society. So this is the way Charities of sects are causes the mention Navigator and it’s like a key worker who would work alongside the family and the post office. Dementia to also try and navigate services with someone so it the idea of being I guess that what you’re describing wherever you have to take it all on your own home from work through this web and complexity which is a Minefield the idea of being a dimension navigate would take some of that stress and burden or few months. There are ways to access that here. Generally you would go to a local place like senior placement agency. Do you work on commissions? They would walk you through a lot of that they would they would say. Oh, I’m not sure they would do as much of the planning. That’s probably all based on who you end up discussing with them, but they can point you in the direction of a lot of services and make recommendations based on what you’re wanting, but your system is a little bit better. So we need a job. So now that are think we need to work. It’s just insane, you know because as I’ve mentioned before and before we started recording it’s like I was completely unaware of the vast quantity of services and support and information available. And the biggest reason is because it’s not centralized. And so yeah, I have a dog very large plan to find a way to centralize that. I don’t know if I could pull it off but that’s a 2021 project to start working. I have all the pieces off to find the person that can help put the pieces together and push it forward. So, you know like the May 2020 wasn’t enough right? How long would somebody with Alzheimer’s or dementia benefit from palliative care and their loved ones? They gave me kind of touched on it a little bit but I think the thing in the I mean so you suck. I do have clients. They’ve got cement to the way that I see it is.
00:15:03 – 00:20:10
Well, I might start sounding a bit philosophical now but start off someone with dementia their minds are usually fragmenting and ebbing away. And one of the things that occurs to me with palliative care is it’s it’s really multi-faith enemy team working. So you’ve got a social worker who might be thinking about the financial implications of receiving care. They might be thinking about you know doing you would you’d benefit from a friend in volunteer, you know, the social aspects of a person’s life. You might have a psychologist or psychotherapist like me going in and I’d be able to sit with someone with dementia all their family members who might be talking about how hard it is to care for someone and how long They are and how they feel angry about. You know, what they’ve been beset with all the person with dementia might be able to talk to the psychotherapist about you know, how how frustrating to me is to lose their words how scared they are of you know, losing themselves, even you know, and then you’ve also got the the physical the Medics who would be able to you know, talk to them about memory changes the cognitive decline, you know, put frame it like that and then you’ve often in palliative. You’ve usually got chaplains or spiritual care leads. So, you know, someone’s doubting their faith, for example or having kind of wild dreams they’d be able to sit with them and process that so the way I see it in some ways is your mind is fragmenting the carer is often feeling as their fragmenting. You’ve got this job. Ballsy of professionals around you but are saying look we’re keeping you in mind. We’re keeping all of you in mind. And so, you know, that’s me idealizing things off. I’m sure you know, it doesn’t always work out like that. But there’s something to be said for feeling cared for when are your a carer and when you know when you’re scared, you know, I the person and you know, and and beyond that it’s real practical things, you know, there are daycare centers often day Therapy Services well-being services that people can access. Yeah. I just think people need to be looked after they re you know, I’ve been this whole past political season that we’ve lived through over here. I keep telling people especially with our Segment of the population is very resistant to wearing a mask. They feel that it infringes on their personal freedoms. I keep telling people true patriotism is taking care of each other off. If we don’t need the government to do it or tell us how to do it. We just need to do it ourselves and true. If you want the freedoms that America is known for that comes with a very large amount of personal responsibility and we forget that half. So that’s that’s my little rant on taking care of each other. It’s very important so long. Is that would that be your the your in your opinion the most important reason for somebody with dementia to access palliative care is that it just kind of kind of holds you all together. I think there’s something in I think you know when I said, you know that the palette is derived from that word to cloak someone in care. I think there’s something wrong. Which is which is quite different often for social care. So social case someone might go in and prompt you with meds or make your dinner. Now it’s getting better over here. It’s becoming much of a relationship centered, you know, but I think palliative care starts from that basis already, you know in in the UK in a way that it doesn’t but I think that’s also mitigates against crises as used as you were saying, you know, if I just think if people are in the loop of systems early on and people are known for services off, you know, it mitigates against those really awful moments where someone suddenly ends a state of Decline and there’s nothing there to catch them. There’s something about accessing service off early. I think that just takes the the anxiety out. I have a listener who’s also in my support group who probably will recognize that fact She was taking care of her mom and her mom was terrible with her and much better with other people and I suspect that a lot of their crises might have been voted if they had been in the in the systems like you’re talking about earlier on.
00:20:10 – 00:25:03
There’s many reasons why that was difficult. But you know, that’s why I wanted to talk to somebody about this because I was searching for more help for my mom because she was very combative and the doctor was very lackadaisical on I think he recognized it wasn’t really anything he could do and unfortunately in our country not much he could do meant there was not a lot of Revenue Source from my mom which is a really horrible way of putting it. I hope that’s not what he was thinking but you know when you have to run a shuttle practice those aren’t cheap so I don’t say that as a really horrible thing. It’s just you know, when you can’t help somebody, you know, it’s I can see why his name is why he was sort of ho-hum on dealing with her issues. Well, I think that’s the other interesting point you raised. I think is that generally speaking marriage. Who carries about getting people better? Right and there’s a certain amount of heroics in it, you know, so we got a cure you you know, dementia can’t be cured. And so so palliative care the they’re looking at they’re looking at people through a different lens. They’re not trying to make you better. They’re trying to you know, life support you in a way where I guess in some ways. How do we accept this awful situation? But but you know, there’s something about that. I think that’s really vital in the other thing that occurs to me is that carers, you know, certainly in in the UK I suspect to saving the government Millions, you know, and terrorists need a break. Yeah, it can be exhausting and palliative care services and any often have links to things like, you know Rest by provision care provision a New Jersey. I feel so does actually allow people to have a bit of a break probably not enough of a break but no break which is important though. Because you know, you can’t keep carrying if you’re running on empty. That’s when crises happen and I think very often oh greed and I frequently spout this statistic is that 6.5% of caregivers, and I’m assuming it’s pretty similar over your side of the world are hospitalized or worse before the person they’re caring for is gone. Now, that’s a pretty bad number. Yeah, and I know how I felt dealing with my mom who everybody knows was in a care home. I can’t imagine I and I have said the reason that after my dad before my dad died my sister and I had made the decision to put her in a care home. My sister’s got school age kids. So, um, Just an our ages that wasn’t really an option and we were we were very lucky that mom had the money to support a care home, which is unfortunately that’s not always an option. It’s frequently not an option over here, but one of the things in this person that I’m mentioning, I know that a lot of their a lot of the solutions that were offered to her was just call 911 the vibe. Yeah years is 999, right? Yeah. So how do you care if you access to palliative care off ordinarily over here, you probably wouldn’t phone 911 in the palliative care team and if you were in your home, so so my mum reads did died of a brain brain cancer and access to palliative care over here really early and so which is not dead. It’s Shepherd. She has lots of multiple seizures and we found the palliative care team rather than 911 which meant that they contained it within the home. So you didn’t have em all of that. You know, real Panic people have been blue lighted my dad, you know getting lost on the way to the hospital so on and so forth, you know with the fear that she might you know die off in in A&E Wars, you know, so that was taken out of it. That’s the I think one of the advantages of palliative care. I mean recently I ended up I ended up writing a book about it because I was so relieved that she had got you know, that kind of care. It seems to me that palliative care would help maintain your quality of life. Yes. I think that’s the that’s the real thing about it.
00:25:03 – 00:30:10
You’re absolutely right. So now it’s it’s a real Challenge and my home And my daughter who are his 29 today, we had a lot of conversations about I had made comments to the effect of if Mom got pneumonia was not going to send her to the hospital. I would Hospice if Mom XYZ and I said, I know that you know, my head says this is right, but I know if that actually happens the two of you are going to have to like literally stand behind me and say no you said the issue is and you know, that’s right right. Now your hearts talking and it’s it’s I think it’s really difficult because people automatically say well, you know, we need to go to the hospital fix the pneumonia or like when my mom fell and broke her leg. I had to go through the decision of whether or not to do the surgery and I was ninety-nine percent certain that we would not dead. Because of her Advanced Alzheimer’s I was extraordinarily concerned that any kind of anesthesia would just make her worse or you know, I didn’t see a really good outcome to anesthetizing her and I’d heard horror stories and I just thought you know it I didn’t think it was going to be a good ending but it was like I didn’t want her not to be able to walk and I knew that it wasn’t a great situation when the surgeon who I don’t know about over there, but over here surgeons like to do surgery when he basically said she’s going to need Physical Therapy regardless of whether she does the surgery or she does not and I said, how many days do I have to see if she’s going to be open to doing the physical therapy before you know, the Bones start fusing back together in a bad way, you know and then move. That requires even more surgery and I hate I think it was like ten days to two weeks. I brought in the traveling physical therapist. She fought him off like he was some sort of attacker and I’m like, okay. Well, it was a good decision not to do the surgery, but that was really hard cuz it was I felt like I was making a life-or-death situation or decision and Faithfully. I had talked to a guest about mindfulness and and what he had taught me and not one of those will mindful person’s so but what he taught me really really helped and Thursday, we just went forward. So it’s with Alzheimer’s and Dementia. It’s really hard to balance quality versus quantity, cuz the quality of their life just disintegrates. Yeah, and you know, you don’t want to just be like, yeah, whatever it is letters just you know, you don’t want to be Cavalier about their living or dying, but I think I think what you know, what time? What your experience points to is the inordinate amount of pressure on you know you as a care and it’s a care of for your mom to be left with those very very difficult decisions, you know on your own and I think that’s one of the advantages of accessing palliative care early because you might not have been able to have some of those kind of conversations early. So and I think that’s the difficulty with dementia because it’s not explicitly seen as a terminal condition people don’t have the conversations, you know, and then it’s left to a point where someone’s having to make the make the decisions on behalf of the person with dementia. Now, we have a palliative care team came in early enough at least in the UK everyone would get together and say and so those questions would be asked do you want to be resuscitated if you go down with such and such wage? That question is asked of people and so, you know, then the the carers are left knowing categorically. Well mom or dad or my husband or whoever it is. They’ve said now don’t resuscitate me. So, you know, they’d be looked after eating at home or or in a hospice. So it’s it’s very I think it tapes that kind of feeling of thoughts on being left, you know shortening, you know, my loved one’s life. It takes that out of your hair. It’s cuz it’s a horrible thing to be left with I have repeatedly said my maternal grandfather who died from cancer said you don’t get out of this world life, which is very true. And I always kind of used that as a Guiding Light to Decision making like in this lockdown, you know, I couldn’t see my mom for two weeks.
00:30:10 – 00:35:14
And I know people who loved ones are in Care Homes. They haven’t been able to see them at all or through a window and I just think there’s got to be a better way. I went right before Halloween to my mom’s residence to deliver little care packages off and they’ve got plexiglass dividing the square tables into basically four segments and I’m like, these people aren’t really getting visitors home. They’re not going out to the park or you know, like the only places they’re going maybe there’s live doctor. I’m like, this is too much and yeah, I’m probably one of the few people that I just I think they we need, you know us and you guys we need to come up with rules and guidelines for how families can go in and visit that’s still keeping them relishing. Believe safe, but you know, we’re not going to get all this world alive. Why are we prolonging? Somebody’s dying? I think that’s with when you get to the end stages of Alzheimer’s I think it’s really difficult to realize when they start transitioning cuz I didn’t quite see that with my mom part of it was because the care team did not tell me we’re having to feed her a lot more often She’s forgetting how to eat and the dementia covers up a lot of the signs that you’re transitioning to the end and it makes it a lot harder jobs are constantly saving them dragging out there. You know, we’re we’re saving their life for saving them know you’re dragging out their death. So I probably sound like a horrible person to some people but Having gone through this twice with people whose cognitive abilities was not great. Like my dad didn’t realize he was on hospice. That was not and that was that was the absolute what he wanted. It was just you know, so and my my paternal grandmother who people know is hundred and two did not want to have all these conversations my grandfather her husband. I think he was probably the only one in my entire family on both sides at planned everything. He had the everything from don’t recessive trait me to here’s where we’re going to be buried and we got this double test. He had it all planned out. She did not want to talk about it and I’ve got to figure out a way of gently asking her. Do you regret that off? Because now she’s told me she wants to donate her body to science which I find really surprising might have to ask my aunt about that. But I think the conversation I think once you have it and you get a job Over the icky feeling then you I think you you’ll get a sense of relief like okay, the the decision like you were saying is not all on me. We’ve had this conversation like I I yeah husband and daughter know how I feel. I think you know if I get Alzheimer’s they’re just going to leave me outside the road, but that’s a different story and I know our systems are different, but would you I’m thinking of like palliative care. They don’t I would think you would have to access it more in the middle stages of Alzheimer’s or dementia. Yeah. I think there’s something about that, you know way you’re I mean, there’s a huge movement in the UK, I think because historically I mean the thing about dementia is is that it brings us face-to-face with him saying things like that way 108 dependency because someone with dementia is going to become absolutely dependent so that stirs anxiety and most of us cuz it probably takes us back to being a newborn crying and not having any control, you know, but the other thing is death and death historically Western cultures has been Cebu no one month. Talk about it. Now. She’s various thought and in the in the UK at the moment, there’s a real kind of I don’t know death Revival is the wrong word, but they, you know people thinking, you know, especially in this pandemic goodness, we’ve got to talk about it. We can’t sweep it under the carpet. We’ve got to know what we all want. You know, there’s an awful lot of site when you don’t say goodbye to someone usually your bereavement is much harder, you know, so how do we have these really difficult conversations that we don’t want to hang out the thing is I think if we have them and not be in denial of what’s coming. It probably means in some ways that the dying person feel less isolated, you know, they’re not sort of stuck in their own feelings and panic because other people can hear them and it also means that those of us that are caring for someone else Know that we’re pretty much trying to do things according to the person’s wishes.
00:35:14 – 00:40:08
Yeah, you know exactly don’t know that it does make it an awful lot harder than I did. I did kind of also use as a Guiding Light my mom. Well, she always say well, I don’t want to be a burden to you kids. But then she also said she didn’t ever want to leave her home. So that was something that was mutually exclusive and I just I knew that you know, there was many times. I I stated, you know, if she knew she was in a care home if she knew she was having to walk, you know, the pull-up diaper and somebody was having the dresser and you know, she would kill me he would hate it and I’m like, well, you know, we’re not allowed to euthanize humor yet. So I didn’t have a choice but I always based my decisions on giving her the best quality of life, but not extending the the years. Of somebody else having to do everything for her how she made it very easy by falling and breaking her leg and that was the last straw for her body and you know about that and right at the beginning of the pandemic so she really timed that quite well, I have to have to give her compliments on that one. Yeah, you’re right if you know the person you know what you say really resonates because I think my mother was the same there’s no you know, there’s no way she’d have wanted to go on and on, you know, bed-bound being turned in bed. You know, I I think what we’ve done in the west at least as we’ve medicalized death. So we exactly what you say. We keep prolonging lives the way you know, many years ago people wouldn’t have been able to have been kept alive. So so there’s something about how do we adjust? In some ways to giving people the best quality of life. Cuz of course if you’re running up and down hospitals and having operations quality of life is you know, it’s it’s getting lost usually now the last the month of my dad was in the hospital, you know, he started you know, he first off he didn’t know what year it was, but then me in a hospital for a month. He was getting the hospital induced delirium at one point. They had hit you know, they had to put the basically the zippered page for lack of a better term over the hospital bed to keep him from leaving. I mean, it was a miserable month. It was just miserable and when I talked to his Nephrologist which is a kidney doctor for both have not had to deal with that and she was telling me you know, and I knew he didn’t want to be on dialysis. He was on dialysis in the hospital. They thought if they cleared the toxins from the system that his memory would improve that was not the case, you know, I I can understand why they thought that so I don’t hold that against them, but it off. Yeah when they decided okay, it’s time to release him from the hospital. They’re like, okay. Well somebody’s going to have to drive him to dialysis sit with him because he’s trying to pull the needles out of his arm and drive back home. And I said I would work and this is like he’s twenty miles from me. So I’m going to have to drive 20 miles to his house get him in my car drive him half way back towards my house sit with him for three or four hours three days a week Mike, honey. I said, you know him your his doctor. We are in a very dark gray are dead. Of not respecting his advance directive. I said, I think we need to call Hospice. You want to know what happened? I got a dial tone. She hung up on me. So that was my first experience when he was released from the hospital he within a week fell and I said take him to the wage other system that with the hospital was that particular hospital system was closer to his house was not convenient for my sister and I much better care than the Frolic just on staff at the hospital said, you know, they were having a very difficult time when they did dialysis of keeping his heart rate up. She spent twenty minutes on the phone with me, which is an extraordinary amount of time complaining blah blah blah and I and I told her the same thing. We’re in a very dark gray spot of not respecting his wishes and she goes. Oh, okay. Well we can call Hospice and I was I mean, I was in my car off in a day near crashed cuz I was just so relieved and I get there the day he used to be released and they’re doing dialysis and they the other kidney doctor wants to talk to me and when she woke.
00:40:09 – 00:45:13
What is the expression on my face meant something different than they thought we went in the hallway? And I said we’ve already planned on hospice and she has that’s probably a better plan off. Thanks Les. My first experience was suggesting hospice was very bad. The rest of it was very good and it was fantastic because between them and the In-Home Care off to take care of both of them. They handled almost everything so we could just go and visit I would pick up his mom on the way over and we would all visit and it wasn’t always pleasant. But that was my dad, you know, so that was a very nice it was as nice and ending as it could yes, so keep that in mind everybody and when you’re on palliative care, it’s different than hospice cuz you don’t have to stop treatments or stop medications. Correct. Yeah slightly in the UK. That’s the case, you know, the the what I learned about palliative care earlier in 2020. That was the case and wage. I think I think you can get palliative care both in your own home or care home. I’m going to have to follow up on that with a companion article to this one cuz we got a couple of questions that you can’t answer because when I realized what you did I I reached out to you and I didn’t realize you were in the UK until we started scheduling was like, oh, well, fortunately the system’s birth similar enough and I’ve talked to enough people over on your side of the world that you know, it’s I I’ve learned how to translate the system’s a little bit gosh. It’s like, I don’t know if that’s good or bad. I guess Dynamic learning is good for me. And you said you’ve worked with people with Alzheimer’s or dementia? Yeah. I I years and years ago, I worked in fact. On Karen in Care Homes. So I was a care worker then an activities coordinator and I used to train soft team. So I’ve had a long history of working in dementia and I ended up doing a a PhD and writing a book called holding time, which is about about going into a Care Homes of people that live dementia and to try to understand what was going on in the relationship Dynamics between Professional Care stuff and people with dementia. So yeah, I’ve spent a long time in my life. I mean, that was my biggest biggest passion when I first ever got into a care home. I have no idea what I was doing and I met the first lady. I have a key works and this isn’t her real name is just I mean, she’s not alive now but to protect her anonymity that I’ll call her Mele for the sake of it. She was just she was a lady in birth. Season she couldn’t speak anymore. The only word she could seat was know which she always used very very ferociously when you try to page her teeth, but she and I just it was one of those relationships where you know our eyes with meat she was very very mischievous. She would hide behind shut-ins and jump out that we good times. Yeah. I think it changed my life completely because you know while it’s you know, as you know, it’s very very hard were people with dementia is still there in in in in different ways, aren’t they, you know, emotionally really alive, you know, and I was lucky I work with lots of people that were into music and the Arts and you put pieces of music on and people just come completely back to life and yes so dead. And yeah, it was never been able to shake it. That’s the thing now and also my grandmother had Alzheimer’s in Wales. So you know it all it all came together while make sure the book is linked in the show notes of people are interested in that they have like one last suggestion on a when we should consider palliative care how we should consider it. I think one of the things I would say is how to how do any of us as families learn to talk on another honestly and openly about these very frightening things as like becoming ill with anything but with particularly with cognitive decline usage and how do we talk about how do we talk about dying in a way that you know, we don’t think it’s going to upset one another because the last thing I think any parent would log Is to vote in their children in some ways with all of that worry on their own and similarly spouses and partners.
00:45:13 – 00:50:05
So there’s something about how do we do it as a culture. Anyway, how do we how do we have those conversations in terms of palliative care? I think, you know very often I don’t know about you but over here we have things like power of attorney. Yes GIF some was diagnosed with dementia. I just think get those things down quickly. Don’t shy away from it get get power of attorney in place get your advance directive same place if you can and probably call on palliative care teens early, even if it doesn’t mean that that you’re accessing the actual Services cuz you don’t need to suck but access some early to try to think about things about what might be on the horizon. It’s not that you’re actually getting visit regular visits, but you’ve at least wage How to space with people that can help you to think about these things that’s what I you know, or I would do over here at least now that makes perfectly good sense and as a person that likes to plan out so I don’t plan out every minute of my day or anything quite that insane, but I just I like to have some some goals, you know, like okay. I need to get these things done. You know, here’s here’s this big dream goal. So there’s some steps towards, you know, maybe seeing if I can make that happen and I’ve had this conversations with my family. Like I said, my daughter just turned twenty-nine day. I’ll be fifty for next week. So by the time this comes out everybody will be older and you know, we’ve had these conversations because I’ve lived through it with my parents and walk in in some respects my grandparents and you know, it’s it’s a lot I think actually when you approach the conversation you think oh, this is going to be awful. This is yeah. It’s but I thought You have a sense of relief when you’ve had it and you’re like oh and the one example I can give I had a guest whose husband was diagnosed with Alzheimer’s off and you know, he goes into his fear response and ended his head. She goes into her fear response. And the smartest thing they did was she told him her biggest fear, which was that he would forget her and his biggest fear was that she would just basically dumped him in a care home and forget about him. And once they understood each other’s fears. They were able to navigate taking care of each other and him mostly and she took care of him for nine years. He never had to go into care home and I think addressing those concerns early May made that easier. Well, yeah, I think you know, you’re onto something in the sense that You know when we get overwhelmed with anxiety fear, you know, we feel vulnerable often times. We recoil or withdraw into ourselves. So it creates disconnect and in some ways the last thing you want when you’re navigating the Journey of dementia is disconnect makes it really hard. And so and phone number. Let’s see if we’re able to express what we’re feeling vulnerable about tends to bring us closer together. Now, that’s true cuz we’re dropping our defenses and you know, the other thing that it’s just amazing dementia. It’s such an uncertain Journey the wherever you can get a little bit of control cuz you can’t not going to have a lot of it. You know, you need those those just see you in a bit of an even Keel, you know, cuz you’re going to have to let go of a lot of control so where you can get it but yeah, you know everybody’s experience home. And speed vastly different though as well. And you know, I guess you can’t you can’t beat yourself up and you know, most people are trying their damnedest off and I laugh a little bit because there are many members of my family and are Control Freaks and I think it makes it very difficult to navigate caring for somebody when you want to control everything and and coordinate everything and get it all just working in the right direction and it doesn’t work that way knowing you. I always you know when my daughter was a baby we’d get her on a on a schedule was like, oh good. This is a great schedule at boom. She’d changing. That’s exactly what was going on with my mom. Yeah, and and it’s really hard. I’ll admit to being one of the control freaks not as bad as some of the others but a little bit it’s really difficult when you feel like you have no control over anything so I thought Yeah, excellent advice is that it gives you a little pieces of control places.
00:50:05 – 00:55:05
You can find stability that I think that’s that’s key Luna control stability just it’s like one more big deep breath when you’re being a carer. Yeah, I mean in some ways it stands to reason doesn’t it’s understandable, you know dementia dying. It’s it’s the you know, you’ve got no control. So in some ways your responses to get more controlling it’s frightening, you know, when we’re young and we get controlling in some ways we get worried and but but I I if you can talk about that. I mean I would say this obviously I say talk about everything but if you can talk about that, I think you know, you can start to understand where the control comes from perhaps sometimes. I learned poops. Go ahead. No colon. I have learned so many Fantastic things this year of this crazy here and so many things I wish I’d known early on and my mom had Alzheimer’s for about twenty years. Yeah, and I think probably the last ten palliative care might have I definitely think it would have helped my parents because my dad had chronic illnesses and I think that it would have really benefited him. I don’t know have to think on it if it would benefit would have been helpful if my dad was not part of the picture if it were to help my sister and I may be hard to know but it’s just it’s it’s definitely something we need to be aware of and something we need to like you said access it early. So at least have the information. Yeah, cuz one of the things I learned in 2020 is I tried to get my mom on palliative care after she fell and broke her leg off. And I think because of the start of the pandemic they were so overwhelmed then I called her. She called me. I called back and left a message and a week later. She called me. Well a week is a long time by that point had already gotten hospice, assuming that my mom would graduate from hospice. And then we would just Institute the palliative care. But like I said, she had other plans so long. This has been fantastic and I very much appreciate that you gave up your evening to educate everybody cool and you’re in the middle of renovating a home. So that’s even more impressive. Well, thank you for inviting me. You know, I’m sure what you’re doing is going to have an awful lot of people I hope so, I guess that I’ve learned so much that I thought I’d known before that. The only thing I can do is is share it with as many people as possible so that nobody else is saying well, that would have been really helpful to know ten years ago. Well, it’s a big job. To that season it. Yeah it is but keeps me, you know, it’s good for me too. So and these conversations are always so fun. Okay. All righty. Thanks so much to meet you you too many people who I recommend palliative care to confuse it with hospice care. I hope this conversation help you understand the difference. I know people that have been on palliative care for years and years and they swear by the support of benefits that they get and their family members get off with that in mind. Please share this episode with friends and family or anyone you believe will benefit from learning about palliative care. I’m also pleased to announce that starting this month February 20-21. I will have a regular guest host doctor Alina. Mujy. She will be talking to us about all things aging well, Our first conversation is about Frailty. And yes, it’s actually a medical thing stay tuned for that and listen for more details on upcoming Doctor Who episodes while I’ve got your attention. Let me tell you about the modules in the eight-week online course from caregiver Chronicles. It starts out with what is a caregiver job in educating yourself on the diagnosis caring for a sick loved one and observing your loved one’s religious beliefs how to live a healthy lifestyle as a caregiver navigate off the medical professionals understanding medication super important legal matters also important the decision-maker insurance Community Resources just durable medical equipment when a caregiver is needed finding a caregiver placement in a Skilled Nursing Facility or Memory Care residence family Dynamics dog. Challenges and conflicts learning how to navigate that is probably worth the entire fee.
00:55:05 – 00:55:25
Then there’s Home Health hospice been planning for your loved ones transition. Be sure to check out their weekly live ask. Dr. Yvette anything the link for that is also in the show notes. And there’s always I’ll be in your ears again next Tuesday.