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A Supportive Podcast for those Dealing with a loved one with Memory Loss

Allowing For a Natural Death (Alzheimer’s Living Will)

Allowing for A Natural Death Alzheimers Living Will

00:00:00 – 00:05:09

Today’s podcast is presented by pod. Go pod go is the easiest way for you to monetize your podcast providing podcasters with a flat rate for ad space. So you always know how much you get. When you include an ad from pago apply today to become a member and immediately be connected with advertisers that fit your audience. That’s pago dot co at the od. Go dot co and be sure to add fadi memories in the how did you hear about pugo section of the applications in just over four years. The first over seventy seven million baby boomers will turn eighty our eighth decade is when frailty becomes common memory loss affects twenty five percent of us and most of us will need help to get through the day dementia and other diseases can affect personality turning warm and friendly people argumentative anxious and self centered. Dementia is not an individual tragedy. It is a family illness. Rippling out in ever widening circles that affect finances caused physical burden exhaustion and anticipatory grief the pace of dementia moves so slowly that many linger in lockdown residences stolen from them is the option of natural death. Fortunately there is a way to have our wishes known even if dementia makes it impossible for us to communicate them. when needed. This episode is brought to you by caregiver. Chronicles an eight week online course from diagnosis through hospice for more information. Use the link in the show notes. Welcome to fading memories a supportive podcast for those caring for a loved one with memory loss before we get in the show. I give you some details on some of the courses that you will receive with caregiver. Chronicles it starts from the very beginning with the diagnosis. But you will also get courses on a healthy lifestyle. Navigating medical professionals understanding medication. Legal matters insurance dealing with durable medical equipment when a caregiver is needed finding one placement family dynamics and challenges in conflict home health hospice and planning for your loved ones transition. There are three options available. I know from personal experience that the more you know about handling this disease the better the outcome will be for everyone so i urge you to check them out and let them know that you learned about them from fading memories. Podcast with me. Today is all re couture. He is calling in from north carolina. And we are going to talk about an alzheimer’s living will today something. That sounds really important. And it’s not something. I was even aware of until he contacted me. So thank you for joining me here for a long to come and share. My living will awesome. Well i tell us about your background. You have thirty years in the care industry. So start us there. Well in one thousand nine hundred eighty four. I asked a friend of mine at a rotary club. What he thought was needed in our community and he said adult congregate living facility. I had no idea with that phrase meant never did make much sense and nor now my wife being a nurse and myself. Having we run a resort in in vermont we knew the restaurant industry. We knew the hotel industry. We knew all the items in a different industries. We said well only two degrees to the right especially as she was a nurse and we had that background. So that’s how we get into it in nineteen eighty-four when the industry really was unknown those accu- mom and pops from there Ended out having three bed eight bed or bed of ourselves. Own soul went managed for corporate america Ten years running an alzheimer’s center in addition to another rail up on the property and Actually my last one was opening a hundred five resident. I story million dollar property. So i’ve had a fair amount of background in the industry ombudsman for many years and very active or the healthcare association which is where all my experiences were in central florida so That’s that’s right. Come from awesome so while you were working in a running one of these kids these tell us a little bit about the residents in how how you got approached about.

00:05:10 – 00:10:01

His living will well before. I go to the absolute answer on how approach i want to review how we as a society look at living wills jr and okay. It was kind of frustrating. That living wills were not actively being utilized in the memory care of environment. That i was in and i wasn’t questioning yet. It was just the way it was. And i continue to accept society’s implementation of living wills but as i looked at it. We were not dealing with the alzheimer’s person you’re really dealing with emergent care. So somebody falls his head. You ever rain bleed The living wheel comes into place Somebody has stroke somebody. may have terminal edition we continue with lead transfusions at seven several and as i went on through it it just appeared that we really were talking about at alzheimer’s person whose mind was totally gone. Weren’t looking at it holistically. We’re looking at the parts and not the whole person in. Although the living whales that exist today could be used. They could be used if the doctor was right. The nurses right amnio is right with the perfect scenario. It could come together. But it typically doesn’t so as i was experiencing different things for instance. I had corporation. We’re for home health agency. It was most interesting that they decided that we need to have more utilization of home help. We needed more physical therapy. More occupational therapy speech therapy more of everything really for the dollar. Right i recall that meeting very very well when as executive director i was told they were setting a new goal. Or eagle not new. Because the company was new a goal of increasing utilization to fifty percent of my forty residents. And i was in awe as to that goal now that go was not shared during the meeting or after the meeting. This leader of the team. What are you trying to do here. Oh we think we could get a minimum of three Before coach her resident. And we’d have fifteen minutes of therapy. Her residence forty-five minutes three times a week and that would just be phenomenal for the company. I’m laughing. my mom would not have cooperated with any of that. I could see where this is going. So now they wanted nurses the nurses aids etc. to kind of nudge. The nurse the charged nurse to ask the doctor. Well maybe we could use to here. Maybe could use not here. Maybe we could. I said i wasn’t experience. And then what happened. The american society continued to grow as dust today and most living facilities certainly florida. I don’t know about the rest of the country. When a resident falls hits their head the owners insist on a nine one one call. They wanna make sure they’re checked out by the medical profession before they allow them to continue to live. Otherwise you could have a lawsuit. What happens is you’re gonna make sense from litigious society but from the family while you got pay for another ambulance ride that kind of thing and maybe covered art may be covered or it wasn’t really wasn’t that emergent need by the mta therefore pay for the entire hoste that transportation so the owners really care that much about it because they’re trying to protect themselves from litigation so that was impacting. How i thought of how living wills are coming into play. Because when they came out of the hospital the doctors want to protect themselves properly so properly so so they script t ot and so now you have somebody who’s six or seven stage dementia alzheimer’s and we’re going to try and teach them how to walk better better gate. Put your right foot out and make sure you concentrate.

00:10:02 – 00:15:00

And and and the person has no clue as you. Well know what. I’m talking about another experience and then i recall. One day i walked into my nurse’s office and she had a lady that was probably a hundred and ten pounds of weight matters at all. But just victor. She’s into early stages and she’s sitting there just blaring out at the world. She doesn’t move. Her is in my nurse. Esther prick her finger or insulin. Check and i said shoe. Why are we doing this. Well scripted. i said you think that this is really gonna help her. Well need keep his insulin levels proper. I said okay. So so what happens if we stop this procedure. We asked the doctor stop it jewish. She goes into a coma. I said what is the problem with that. You not think our creator prepared our brain or natural dying process before we had all these pharmaceutical companies in america inches. Well i’m nurse. Just all doctor’s orders. I should i understand so those are some of the experiences i had and one of them that probably all together was a visit from a man named homer now. Many men entered my office on a daily basis and set two sometimes three men. It had the executive look so they felt comfortable coming into my office and sitting there and homer would never speak a word or two never phrase never a sentence remember this one day this man of six foot. Three he had hands would be envied by. Nfl receiver sat across from me. Ill looked up at me. And he said life is more than taking a breath and to quote you put his huge hands his face and he started sobbing so loudly that that you probably hear throughout the building. I close the blinds on the window. Remember that and the door. And i listened to that man. Sob twenty minutes looked at my watch. It was a profound experience for me. When i tagged to that story that homer never completed a process actor that joe my no so that stayed with me so i had those kinds of experiences i would probably prone to somebody helping move to the next step but i wasn’t about to do it on my own because i didn’t know that i had the capacity or knowledge to continue so it was on that particular day that these two daughters came in from the boston area and they asked me if i could assist them in allowing their mother to die more naturally less intervention and i was low confused at first but within a few moments i realized where were going this discussion because a staff was trained to do everything they could to make sure that every resident has food intake on a regular basis. And that’s a good policy. Isn’t it wrong. That alison i remember when a Doesn’t want to eat than the policy. Says okay somebody is her him to the chair Airs the chair. Somebody get invites them to sit down preparing the food in front of them or not for juries but placing their food in front of them talking to them. And then you finally get them to sit down you Chairin you mealy. Crimes process is all idealistic in some ways. Practical another and now. We have to go back to the individual and so if you had a sally sitting there and she doesn’t want to eat or behaviors not appropriate. She wants to push away the table while the already the residents citizens go say now. Sally lays plays a come on open. Your mouth in oil like this applesauce and sally doesn’t do any the oh come on just watch you open up your mouth come on you know our tastes good place place in sally opens her mouth in the aid. Which yeah we’ll saucer now. Now that seventh stage it oftentimes about swallowing. So now it’s on sally. You don’t need to swallow this please. Just you swallow.

00:15:01 – 00:20:14

And that’s the process that most times it occurs in the late sixty seven stages of dementia. So you look at the holistic part Comparison a whole person the part comparison. Are we really helping equality natural dying process when the person doesn’t recognize a spouse and i’ll is combative is losing weight. Wanted to give them then sure because they’re losing weight and we know they’re going to continue to lose weight. Businesses large and small ashley was important. Some break even something make a profit more than others but across the board people who operate these entities. We prefer a positive cash flow to negative cash flow. It’s understood understandable. It’s understandable so they have this. Close the back door policy. Don’t let the residents leave until it’s really their time. Well who calls the shots to when his their time. These two daughters this meeting with me only ten minutes. I don’t remember it’s not very long. I went out and talk to my age head or on staff at that time. And it’s up to you. I am not going to ask you anything that you think is inappropriate however given that if you feel comfortable to allow this mother to walk around without coercing or a too strong but kind of inducing her to set. She wants to walk. Doesn’t want to eat the food presented. It’s it’s really nice presentation. She doesn’t want us letter walk and when she comes back and she sees plate. We’re gonna feed her. I don’t care what time of the daughters if she doesn’t want to let her go and her body’s telling her she doesn’t recognize food as a integral part of life in. That’s what i started realizing if you don’t realize what food is to you and your sustenance that says a lot about where your mind isn’t where your whole life has gone because our nursing within a few minutes birth so let’s let’s just put this in perspective in allow these people to go through. This process is dying process. More naturally than what we think as a society is. Keep all people alive at all cost because oftentimes because letitia environment so That’s how the two daughters started the process with me. And i recall. It was january night. I am not a morning person o’clock in the morning. I wake up. I find myself sitting up in bed. Look at the clock news. Three zero zero. I’m wide awake which is not taught me either. What am i doing wide awake at three o’clock in the morning it was if a both lightning came down and the message was clear yet up go right. Living will specific alzheimer’s disease. I walked a house at the office. I’d say but in three oh three. The computer was on. And i started my one finger typing. Tell you that. I am not one that loves to write by. It was again. And i then looked at the clock. It was eight o’clock. I stopped printed Showered woodwork arrived at work about nine and by chance one of our main primary care. Physicians was seated in my nurses off. And i had the draft in two three ages. And i said doc would you take a look at this and the two three minutes went by just stood. There didn’t move kind of all. Am i in trouble since a doctors now looking at this and he looked at me after two three minutes and his quote was where the hell of you’ve been for the last twenty years and that was a and affirmation that i’ll never ever forget from the type and you’re not a clue what i was doing it through two in the morning. So that’s where it came to be called an attorney right away and friend of mine texted him or not exit but sent him of the draft and he sent back one of the phrases to put up the top of the living wheel and then polish up some phrases and remove any medical diagnosis.

00:20:14 – 00:25:00

The doctor said forget all the diagnosis that you introduced. Take all paragraphs out. And just stay with your your natural dying the rather than prolong all day of life and that became the the living will and Was published in two thousand nine and went on a website and We go from here I’m not thoughts. I could read them to you at some point. You mentioned thoughts before. I read them to you while i was gonna tell you. Don’t remember if we discussed this the other day. My mom my mom died from lack of food liquids as a result of late stage. Alzheimer’s i had to look up the term on her death certificate. Because as i’ve mentioned to other people. I was really glad that her death certificate did acknowledge that she died from alzheimer’s because to me it’s a historical document and i wanted it to be as accurate to what was really going on. ’cause so many people die of other things and i don’t know if they’re dead certificates actually say You know they died of x. Because of alzheimer’s i haven’t i haven’t done a poll. But she as most people know at this point she broke her legs and she was bed bound and she’d had another fall. She fell march eighth and she had fallen on december thirtieth so she was definitely having problems. She was a fall risk at all. But i had said for a couple of years that if she got pneumonia i wasn’t gonna treat it emitted If she you know basically. I was the health care. Power of attorney My sister co-trustees. But i got the singular responsibility for the health care for both our parents which was good but I would have loved to have had a living will because there were things that were going on that i did not feel i can share with my sister because it didn’t feel that i could one hundred percent trust that. She would feel the same way i did. We don’t see the world at all the same so that’s not an unrealistic thought. And i wanted. I wanted my mom not to just be prolonged in poked and prodded and all this other stuff and they went through feeding her and sweet talking her into eating and all that stuff like you mentioned. So i’ve i’ve had some experience with that. But she basically gave up know they didn’t. She was on hospice. So i guess that probably helped but yeah. I’m i’m a firm believer that we should not prolong. we should not prolong. Somebody’s dying process. That’s definite sure. Well that’s this living will. Does it gives the person while they’re still able to think about their demise to not necessarily be emergent need as living wills do says okay. Here’s the whole scenario. We’re to talk about food. We’re going to talk about airport. We’re going to talk about cash flow. He careful one of them. This be careful that there’s no exploitation personal or government announce a dollar resources. How often is it well. Fifty percent utilization in that residents of memory care was saying there’s more american dollars medicare dollars available for this company. Therapists are good people. They want to keep the job. So they’re going to therapy when you ask one of them on on one occasion. The gate said so. Do you think that this is really going to help. She said well while. I’m standing next to her each three times a week. It actually is making a better walking better gate for her. But i have to admit that. I don’t think she’s gonna remember it ten minutes after. Walk out the door each and every time. So those are the things. I would call exploitation of the resources. And it’s unfortunate that our society and our healthcare’s has gotten to that point definitely need to pivot away from that and maybe maybe our conversation today will help some people do that. So there’s some specific things in an alzheimer’s living well that’s different than they standard living.

00:25:00 – 00:30:02

Well in can you explain some of those to the folks sure because my husband overheard our pre conversation the other day and he was he was actually quite interested in what we were discussing. He was impressed. And i don’t think any of my podcast in precedent that much well basically the way i wrote it And i think somebody who’s guiding me. Because again i had no clue what i was doing. It three o’clock in the morning I decide to start writing phrases sentences. As if i’m speaking to my children that they need to understand that i understand so i am. I’m saying whereas alzheimer’s disease is a progressive degenerative hind of saying to them. Okay i’m going downhill. Except that don’t don’t think i’m coming back. It is progressive. engine general. Okay it is term a idiot all at once. We’re going to turn this around society. Come wait a minute. What happened if i’m in seven stage alzheimer’s and they say they had this magic bill. Well if you can’t reverse it know keeping seven stay each. I know centerstage per year to ten because you were able to further degeneration so i then said well you’ll have family member’s gonna come along and say and we’re not sure that mom or dad has alzheimer’s you know it could be x. y. or z. Well in a sense maybe today. In united states a few other countries we can through some technology. Now say it’s absolute after. This is international world conference in san juan puerto rico and made that presentation there is forty countries that accept this well. Well i’m sure that many of those forty countries they don’t have the technology ascertain whether or not is absolutely alzheimer’s. Now we’ve talked about ops is being the only way to prove it but maybe now any countries can prove without. It kept that in the the living wheel because it is throughout the world as a as a legal document i had to put in a basis for its implementation thought well what better basic news the global scale deterioration scale now all countries can look at the seven stages and say okay we accept as as as a glow so i said well now when you are in if i’m signing up when i am in six late six i worked really going to happen right the put six because they don’t divide into two so what i’ve been snicks are seven and two medical physicians licensed physician to say he’s in six or seven that implemented living wheel and then all the decisions not so all the decision based on quality not prolonging gang the ethical challenges me well we can reverse it now if you can absolutely see we can. You can’t live with me and allow me to die natural. The food part was probably the most difficult one and actually changed it after. Two years in doubt deals with food supplements. And that’s a very very touchy issue. I believe that. If i’m in six or seven stage and we’re i’m being given food supplements ensure or its competitors. It’s an attempt to keep me alive appropriate for some. But i and sinus letting wilson no my immune system is breaking down. I’m losing weight. Which is standard in alzheimer’s. So don’t try to prevent my natural debt salt. I consider usage of food supplements in my dietary regimen as artificial intervention and undesired. I consider mechanic alter textured food as acceptable is having a hard time swallowing out them out. Extra vote jury aid. However when i cannot or do not recognize desire understand the need for the prepared and presented food or drink as benefit to sustaining my life i desire no coercion to feed me be done. That was a direct result of those two daughters from massachusetts.

00:30:03 – 00:35:07

I had to deal with other things. Because of what i had seen. In the treatments and therapies so i enter another paragraph medical procedures medical treatments prescribed occasions and therapy not limited to physical occupational speech respiratory interventions are not necessarily beneficial to my eye and alzheimer’s disease will likely not allow me to respond with appropriate interaction received a short or long term benefits. The overall positive value of the intervention may not exist. And i went to the financial because i saw the cash flow situation. Close the back door. I request that all parties guard against interventions that may be considered exploitation of personal in government ananta resources deficiently. Considering wally of life versus prolonging i consider non-intervention to be humane allowing the natural dying process. I consider palliative care program including medications to affect positive behavioral responses. I’ve looked at it a hundred times or more. I don’t know what i would add. i was certainly additive. If somebody came up and said this should be changed to do such and such so far. Rose accepting very nicely. My goal was my mom was always to do what i could to maintain quality of life and it was getting challenging at the end and i’m grateful that she is going to sound terrible and grateful that she fought with the caregivers which caused her to slip in the bathroom and break your leg. Which was the beginning of the ends broker leg on march eight and march thirty first twenty three days tiny bit over three weeks and i had already been looking for a palliative care company but because of the kovin pandemic that was at the very beginning the company i was working with. They are also a hospice company. That took care my dad. I think they were overwhelmed. Because we traded voicemails and that took another weeks of the gal to call me back. And by then i’d already contacted a different hospice company with the thought that i didn’t think mom was gonna die and i wanted a new she needed. Everybody needed additional help. And this was the way of getting additional help immediately am i thought processes once she graduates from hospice will. Yeah graduates from hospice. I will have been able to implement the palliative care company. Well that plan didn’t work out so well. But i wasn’t aware of how often they had been feeding her. It was becoming more obvious in the last couple of months. And i didn’t really know how to go about saying don’t feed her. Don’t sit there and spin it in her face. I watched them do that with other residents. Because how do you know you’re not allowing them to starve to death. I know from my grandfather passing away. He had bone cancer when your body is setting down. You just don’t need as much food and you don’t want as much food but that’s really hard to know like my mom walked in talked all the way up until the end so it would have been a really big challenge to know. Are we forcing a starvation. Are we torturing this poor woman. Are we doing what her body needs. Are we allowing her to die. Naturally that would have been a gigantic conversation. That i don’t know how i would’ve managed in the care residents. She lived in. I think. I think they were a lot more on the natural side of things than all the interventions and maybe that was because of me. I don’t know i i’ll have to ask the one. I can actually go back and visit. Which i intend to do to take one of my my golden retrievers who likes to go visit with the ladies that live there and go and visit. ’cause i feel like i’ve lost touch with everybody because you know we could go for two weeks before mom died because of the pandemic and then obviously we still can’t go and i don’t have a reason to so i i i’ve got questions i want to ask them. Just because i’m curious that’s kind of my nature but quality of life is important. I it’s it’s hard to know. I think that you just said you believe the staff was on the natural side. And i have found that to be in the ninety percentile without any scientific basis.

00:35:07 – 00:40:03

I haven’t countered them. But i would say to ninety percent course. They’ve not been given a tool to proceed at where he goes back to that doctor. Saying where have you been. He could have used it. He wanted it and most physicians want it but they don’t want to bring it up and then be liable so it’s important we as individuals are in control of our own future and state that So i actually Think that those two daughters did a wonderful yes. They have wonderful gift to the world and then when i was leaving the on chair person at the closing session thank me for bringing this living wheel the attention of the world and to me. That was a major stamp of approval as to how society wants. An answer had not yet been provided. Definitely think a society and humans have not caught up to science and technology. Just we’re going to have to hurry it up because technology changes so quickly there used to be back you know. Let’s see my great grandmother on my dad’s side had a pacemaker. Inserted irregular heartbeat. Totally healthy as as pacemaker. Put in her chest. Nineteen seventy eight. She could feel it in. It freaked her out. This lady that traveled across the country and a covered wagon. She lived in a dugout so this was for people listening. That are my age and older. This was like little house on the prairie days. And she was not comfortable with feeling this pace maker and being reliant on this piece of technology to keep her alive and she just basically curled up and gave up and died and that was the whole point of putting the pacemaker and to prevent the had been. She was not comfortable with that thought. So it’s just really interesting. Think back you know. Pacemaker was all she needed was to regulator heartbeat. It wasn’t like she had a major heart congestive heart failure or anything. So it’s just. I find it really fascinating know there are. I’ve met people that they want. Everything done to save their their spouse. Usually it’s a spouse and sometimes it’s parents you know they’re not ready to let them go and i always found that really frustrating. His i my mom had done. Alzheimer’s journey for about twenty years. And i had stated in many podcasts that i was ready for the journey to be over. Very definitively was positively. Sure i was ready for it to be over and then when it was over i was quite surprised that i was less ready very optimized. You can’t be emotionally always readying. That’s jarrow have rubber with a i Immune to cut in. I was on a tv program with the attorney and John feldmann and gone said of the thousands of cases that he or people clients he dealt with in his career as a elder law and and other situations dealing with living wills and it might be he said not a one in the thousands he dealt with ever wanted to have or quality of like the end he said however nobody has had this answer and so we as a society i think. Want it but we just not an less dar’s to say this. Push this issue i. I’m grateful for those two daughters as your life than four. Whatever inspiration struck you at three. A m. Because i i feel. It’s really hard to know. Am i providing quality of life for this person or am. I just sustaining them. In a less than type of life. That’s where i was out with my mom. Like i said i’m very grateful that she took most of the decisions out of my hands. So where can people by this living wilkes. I think we all need to have it. My husband and i are in the process of doing our jobs. We’ll be definitely on my website. Also neighbors living will dot com. That is hot win. Sooner is a standalone document or an. They can just air existing listening if they wanted as an or.

00:40:03 – 00:43:05

If they didn’t have won this can be used as standalone occupants and people in the early stages even mid stages of alzheimer’s can sign it. They have loosened dates. They have day when they’ve talked to the kids. And say please don’t please don’t do such and such and at that time they could sign. It makes i think official sorry thousands like i said we’re having a little bit of a slow internet connection today but this was such an important topic that we powered through our technology challenges today and i think it’s important because i think none of us has a clue what tomorrow will bring what next week will bring is twenty. Twenty has not proven that to everybody. Then i can’t help but we need to plan ahead. You know get this. Alzheimer’s living will get it. You know handle it the way they need to be handled with your your legal and all that good stuff. Because you’ll you’ll be happy that you did it. And if you don’t ever have to use it that’s even better jed and if anybody want to contact directly to ask questions i would welcome them to contact maze. Ari h. e. n. r. i. He is an paul and couture c. o. u. t. u. r. e. g. Mail and i would welcome fractions. And hopefully i can answer them. Awesome while make sure that’s also in the show notes. Hopefully your email. Inbox does not explode. And i really appreciate this. And as i said. I’m very grateful for those two daughters. Inspiring you to wake up at three. Am and writes this. Alzheimer’s living will just to make life better for everyone. Because that’s that’s something i think. We all need to start focusing on is how can we take care of ourselves and take care of our community and we’ll be a better world when we do that. Thank you jen for asking me be party. Podcast you’re welcome. If you’ve learned as much from my guest as i have you please share. These episodes with friends and family also be sure to sign up for our weekly newsletter on the website. We share a brief description of each week’s episode new recipes. That are specifically curated for those living with alzheimer’s and those taking care of them there are companion articles to most of the episodes. There’s resources and you know. I’ll probably throw in some cute dog photos because why not you can also get a lot of that information. If you follow me on social media the links are all in the show notes and as always. I’ll be in your ears again next tuesday.