Wednesday, September 28, 2022
HomeHealth InsuranceNavigating the Troublesome Challenges of Alzheimer’s, Half II

Navigating the Troublesome Challenges of Alzheimer’s, Half II


Peter Panageas (00:07):

Should you’re on the lookout for well timed, related conversations about an important matters in well being protection, you’ve come to the precise pod. That is IBX: The Cowl Story from Independence Blue Cross, hosted by me, Peter Panageas.

Peter Panageas (00:20):

So by day I oversee all of our nationwide industrial enterprise right here at IBX. I’m additionally a caregiver and a affected person. We at all times say that well being care is private, and it’s. So my company and I are exploring how the massive image and the massive points have an effect on our on a regular basis lives and the well-being of these all of us care about. Collectively, we’ve bought this lined, so let’s get began.

Peter Panageas (00:45):

Hello everybody. That is Peter Panageas. Welcome to half two of episode 13 of IBX: The Cowl Story. As you’ll recall, this month recovering the subject of Alzheimer’s. Becoming a member of me right now is Dr. Heidi Syropoulos, a medical director at Independence Blue Cross, who joined our group after working towards geriatrics for almost 30 years. We even have Mike Burnham. Mike is a detailed colleague of [inaudible 00:01:13] husband and a caregiver to his dad who’s residing with Alzheimer’s. Lastly, my brother-in-law Jim Biggs. Jim is the CEO of West Bay Senior Dwelling in Irvine, California. Dr. Syropoulos, Mike and Jim, thanks all a lot for being with us right now.

Mike Burnham (01:28):

Yeah. Thanks for having me.

Jim Biggs (01:31):

Good to be right here.

Dr. Heidi Syropoulou (01:32):

Thanks for having us.

Peter Panageas (01:32):

To our listeners, I needed to share, since we recorded this authentic podcast a few week in the past, there was an replace that we thought was crucial to share with all of you with reference to Michael’s father. Mike, I’m going to name on you right here in a minute, however I believed it was additionally vital to honor the legacy of two unbelievable those who we’ve spoken about right here as a part of our podcast. For our listeners we’re sharing this as a result of every of you’re most likely coping with this in some trend that Marilyn Biggs was an unbelievable lady. A girl who was God loving, who cooked day-after-day of her life, who cleaned day-after-day of her life, who liked and cared for her husband and her little children, grandchildren, son-in-laws and daughter-in-laws, had such a ardour for all times. This illness modified her. It took her away from us, nevertheless it additionally allowed the household to spend time together with her in ways in which that they had by no means spent together with her.

Peter Panageas (02:28):

My spouse shared with me a narrative that there have been occasions that she didn’t know what to do or what to say, however she would simply maintain her mother’s hand. That helped Mary and her mother get by this actually distinctive and difficult time. It was one thing that I discovered fairly profound as a strategy to join together with her mother in ways in which helped her navigate by this journey. Michael, when you might, share with our viewers a bit bit about your dad and what he was and what he did and sort of the place you sit right now.

Mike Burnham (02:59):

Certain. Yeah. Thanks Peter. It’s good to have the ability to present some context into who my father was and what we’re coping with right now to indicate those who issues can change dramatically in a really fast period of time.

Mike Burnham (03:13):

However let’s return. My dad, who’s one of many smartest individuals I do know, he needed to go to the College of Delaware when he graduated highschool. He loved the celebration aspect of issues greater than the schoolwork. However then he determined to enter the Air Drive and there he was a technician who labored on the electronics, each airplanes and sonar and radar. I feel that’s the place he type of picked up the power to repair rattling close to all the things from vehicles to family home equipment to plumbing, flooring. I imply, the person might do all of it. However when he returned from the Air Drive, he finally took a job in our household enterprise, which was they owned a meat distribution firm that in addition they made their very own sausage and scrapple.

Mike Burnham (04:07):

So I give a plug out to Milton Sausage and Scrapple as a result of it’s the finest round. Very arduous employee. Once you personal a household enterprise, you’re not tied to 9:00-5:00. I’d say most days, he’s there at 7:00 a.m, and typically wouldn’t get dwelling till 6:00 or later. My mother was a nurse so their schedules typically didn’t jive. He’d must do a variety of the issues to handle me and my siblings. He did all he might to supply for his household.

Mike Burnham (04:37):

He additionally supported my brother and my sister and I in all of our actions, so Boy Scouts, teaching baseball. He mentioned, “I didn’t even know baseball,” however he liked to be with us to educate my brother and I in baseball, my sister in softball. Actually supported us children. He would come to all our video games. Even when we weren’t taking part in, he was there. You’ve bought to know he as a small enterprise proprietor working lengthy hours and lengthy days, he nonetheless made the time to attempt to make it to our video games, and I liked him for that.

Mike Burnham (05:10):

I feel the perfect factor about him was mother. He would typically say that she was the perfect factor that ever occurred to him, and I sincerely agree. They shaped such a powerful household unit, and it was such a loving, caring family that I feel that’s what helps outline who I’m is that I had such nice position fashions to know you’re employed your butt off, however you already know if you come dwelling you’ve bought your associate there to at all times be your rock.

Mike Burnham (05:45):

Like I mentioned, he’s one of many smartest those who I do know. We might by no means beat them at any board recreation. We frequently on Friday nights would have board recreation nights, Monopoly and chess. He taught me play chess. However the man simply, he was ruthless to us.

Peter Panageas (06:03):

Aggressive man, huh Mike?

Mike Burnham (06:04):

Oh yeah. Poker. He taught us play poker, issues he picked up within the Air Drive, and nobody might beat him at that both. So crossword puzzles and phrase finds and considering sort actions. Trivial Pursuit. My gosh, this man was only a strolling encyclopedia about info. It’s good to have these experiences and reminiscences to know who dad was as a result of he’s positively a distinct individual now.

Mike Burnham (06:37):

I discussed the analysis for dad was again in, the official analysis, I feel was 2016. However once more, we had began to see a variety of slippages in reminiscence. I feel one of many first issues we seen is he wasn’t doing the crossword puzzle anymore. He was an avid reader of books and newspapers, and he would typically get two or three newspapers a day. He slowly began to not be focused on studying, not be focused on watching TVs as a result of he couldn’t observe together with the plot. In order the issues have progressed, we maintain onto who he was as a result of I feel that’s the vital factor to recollect is that this man was a really sturdy, good, caring, loving, stoic particular person, and this illness has simply destroyed all of that. I do know he nonetheless loves us.

Mike Burnham (07:32):

However to supply you an replace. After we recorded the primary a part of this podcast, he had began right into a daycare program, and we had seen him that weekend. It was my dad and mom’ and my in-law’s anniversary. So we had them over to the home, and it was completely the perfect that I’ve seen dad in weeks. He was with it, he was having fun with himself, he was speaking. We have been like, “Oh man, perhaps this daycare factor was nice for him. It was stimulatory. Possibly it’s what he wanted.” Then the subsequent day he wouldn’t get off the bed. The following day after that, he wouldn’t get off the bed. He began to say issues like, “I can’t do that anymore.” Everyone knows what he meant by that, however it’s arduous for me to listen to it and not to mention my mother. For him to say these issues to her, it’s fairly saddening.

Mike Burnham (08:34):

So up to now three weeks, we’ve gone from dad up and about to getting began on hospice. We had the hospice of us come out to the home a pair occasions, and we made the choice to have them begin to grow to be extra current in his every day care and assist us handle it. We’re nonetheless hopeful that the hospice may also help present consolation and care to each my mother and my dad as a result of it’s simply gotten to the purpose the place we are able to’t handle all of it. I’m very grateful to the Delaware Hospice Program that they’ve been so responsive and so supportive. We solely began this couple days in the past. We acknowledge the place we’re at on this journey. It doesn’t imply we don’t nonetheless have hope that he could be snug and provides us some moments of readability. I feel that’s what I’m wanting ahead to is simply to have occasions once I come to go to him that he’ll nonetheless acknowledge me, and we’d discover one thing we are able to discuss the place he’s going to keep in mind that.

Mike Burnham (09:45):

Final time I noticed him was proper earlier than Father’s Day, and I simply sat subsequent to him. He was laying in mattress, and we have been speaking. We weren’t speaking about something vital, however he reached out and grabbed my hand. I knew that that was his approach of telling you that he knew who I used to be and that he liked me. What extra might you ask for in that second? Simply to know that your dad nonetheless cares a lot for you and if he might, he would do something for us. I nonetheless assume we’ve got a methods to go, and I’m very hopeful once more, that I will have these small moments to carry onto and cherish.

Peter Panageas (10:37):

Mike, understanding you and Karen and your children, the legacy that you just’ll proceed in honoring your dad on this subsequent part that you just’re all going by, I do know might be one thing that he’ll be so happy with you. Understanding you and never understanding your father, however understanding who you’re and your character and what you’re about and your kids is a testomony to your dad and to your mother. Thanks a lot for sharing that with us. Our ideas and prayers and collective hugs are being despatched your approach and your loved ones’s approach as you undergo this subsequent part.

Mike Burnham (11:09):

Thanks, Peter. I admire that.

Peter Panageas (11:13):

I’ll simply echo what I mentioned earlier once I talked about what was particular to Mary as she was going by this journey together with her mother. She held her hand when there was occasions that she simply didn’t know what to say or what to do. Simply by holding her hand, she felt a degree of consolation not just for herself as her daughter, however she is aware of it meant so much to her mother. You doing that along with your dad, if there’s something there so that you can take away from that, it actually helped Mary and her mother by their respective journey collectively. God bless you, man. God bless you and your loved ones.

Mike Burnham (11:43):

Thanks, Peter. I admire that.

Peter Panageas (11:46):

We touched on various issues right here. I’d be remiss if I didn’t a minimum of share with you three, and Jimmy is aware of this as a result of it was his mother and pop … I occurred to be married to Jim’s youngest sister Mary. After we discuss taking these steps from dwelling to assisted residing and also you discuss concerning the paperwork and the legalities and the group related to that and making an attempt to make all the precise strikes. I have a look at what Mr. Biggs did for Mrs. Biggs and all of the strikes that he made and all of the group that he did and as proactive as he was … As Jimmy mentioned, there have been some issues he did spot on and there have been issues that he thought he may need been doing proper … Proper, Jim? That he thought he may [inaudible 00:12:30]-

Jim Biggs (12:29):

Yeah.

Peter Panageas (12:29):

However it might not have been the precise transfer. However it was all completed in love and group and construction and making an attempt to do all that. He had these three daughters and also you talked about it, a group. Staff Burnham floating round your dad proper now, Mike, and your mother. Staff Burnham is and cousins Burnhams whoever they may be, they’re all there serving to out. You may have Sue and Nancy and Maryann serving to mother day-after-day and serving to dad and making an attempt to navigate, and Jimmy from China offering that. There’s this international group, if you’ll, serving to. Even that, with all that, with all that you just’re doing as group Burnham and all as group Biggs did and wonderful work and caregiving, it was overwhelming. I watched it firsthand. I noticed what it did. The around-the-clock care and simply little issues such as you have been simply speaking about. Your mother going out and getting footwear, Mr. Biggs simply going out to get a haircut. Little issues like that have been overwhelming.

Peter Panageas (13:27):

I feel the issues that you just’re doing, Mike, with your loved ones and Jim, what you and your brother and sisters did to assist mother and pop have been a actuality of most likely what lots of our listeners are having to sort of navigate by day-after-day. I couldn’t agree extra, Heidi, along with your counsel and suggestions on all the suitable paperwork and authorized paperwork. It’s crucial. Jim, I’m going to ask you, when you might have new sufferers coming in, do you see that as a typical thread, that a variety of the paperwork will not be filed appropriately or simply all structured? Is that one thing that you just see typically?

Jim Biggs (14:00):

Often, Pete, it’s completed, nevertheless it must be reviewed and up to date as a result of in lots of instances, significantly if a definition that resident coming into reminiscence care most likely doesn’t have the capability to make these selections. So it’s simply validating, ensuring the first, whoever is that energy of lawyer, who it’s been transferred to and it’s the medical energy of lawyer, not essentially the monetary energy of lawyer … They’re not at all times the identical individual, however we actually need to make it possible for energy of lawyer understands, fills in any of the blanks on the paperwork that has not been accomplished. You positively need to be certain that the i’s are dotted and t’s are crossed as a result of it positively comes all the way down to … You heard Michael discuss it earlier … You’ve bought to have a plan. As we came upon, all people is aware of that quote from Mike Tyson, “You may have a terrific plan till I punch them within the nostril,” and Alzheimer’s is Mike Tyson. It’ll hit you within the nostril. It’s identical to, “Wow, what simply occurred there?”

Jim Biggs (15:03):

The household wants to speak, must adapt. From a supplier viewpoint, we acknowledge that I feel, Pete, what you noticed with the three sisters is a bit bit uncommon. That it’s not unusual typically to have members of the family that there’s typically unresolved childhood points. There’s typically it doesn’t actually matter why, however there’s simply individuals which are coming in. I didn’t need to be that man coming in from China abruptly simply saying, “No, no, no. Do that. No cease doing this.” Once more, you’ve bought to have above all that, to me, what’s most vital is the household consensus and that we’re all on this collectively to navigate what’s finest for the resident.

Jim Biggs (15:48):

I feel no one will get their approach on a regular basis, nevertheless it’s simply vital that these voices, individuals, they’ve bought to really feel like they’re in some instances and once more, it’s been briefly touched on, it’s irritating that the member of the family doesn’t know, “Hey, all these items we’re making an attempt to do for our mother,” or what you’re making an attempt to do on your dad, it brings out a sense of helplessness and that may typically, and it’s simply having these discussions with the household simply to make it possible for once more, good, clearcut consensus. These issues must be completed as a household not within the presence of the resident. Then ideally you attempt to communicate as one voice to make a few of these main selections.

Peter Panageas (16:24):

Properly mentioned, Jim, and I’ll simply say it once more, Mike, to group Burnham and the work that you just all are doing and definitely to group Biggs and the work that they did, these are two examples of a household rallying round and making an attempt to handle a really, very difficult state of affairs. I feel our listeners can all study from the unbelievable work that Michael you and your loved ones are doing and pouring into your dad and mother proper now and definitely the unbelievable work that Jim you and your loved ones did and taking good care of mother and pop. Go forward, Jim.

Jim Biggs (16:54):

Yeah. Pete, once more, the factor I emphasised and Pete I’ll share this fast story. I got here again from China day earlier than Christmas, considerably serendipitous. A venture I used to be engaged on over there was delayed. Full sidebar, nevertheless it’s simply to make my sisters chuckle. My mother at all times swore she was psychic. She simply, “I’ve this magical skill,” and every now and then she would choose up the telephone. She’d hear the telephone ring after which, “Oh, that’s Janice calling.” Typically it was, typically it wasn’t, however in her thoughts she was psychic.

Jim Biggs (17:27):

I at all times used to make enjoyable of it till once more, the venture bought canceled in China. I made a spot resolution simply, “Hey, I’m going to seize a fast bag. I’m not going to pack. I’m not going to get items.” I bought actually the combat that bought me into Newark Christmas morning. Simply wasn’t deliberate for, it was identical to, “Hey,” and I used to be truly going to see my daughter and my grandkids when Susan known as and he or she mentioned, “We bought some horrible information. Mother was recognized with the liver most cancers, pancreatic most cancers.” She goes, “You’re not going to have the ability to make dwelling.” I’m like, “Oh, I’ll be dwelling in two hours. I’m up on the Turnpike.”

Jim Biggs (18:04):

So I’m going on to the property, I’m there for perhaps two hours and we’re all speaking. My mother’s mendacity there in mattress. It was apparent, she was beginning to get the hospice care. For these listeners who could not know, hospice is usually end-of-life care. It’s vital simply as a lot for the reminiscence care as it’s for most cancers, or particularly for the 2 occasions like my mother, however she was laying there and we’re all speaking. That is sort of what I imply about simply you need to be there since you simply by no means know when these moments occur. Out of the blue I hear this, “Jimmy, Jimmy,” and that is from a girl who hadn’t actually acknowledged her children for a pair years. So I came to visit and he or she mentioned, “I’m going to belt you.”

Jim Biggs (18:54):

These are phrases I hadn’t heard from my mother since I used to be a younger youngster, nevertheless it was the one factor on the planet that she might have mentioned that she knew I used to be there. By some means at that degree, she fought by regardless of the Alzheimer’s had completed to her. In fact, later that night time it was her closing phrases have been, “I did it, I did it.” As I sort of espoused on the eulogy, it’s like we’re not fairly positive what she was considering at that second. She was underneath some hospice care, so there’s morphine, there’s the Alzheimer’s, however I’d wish to assume that one way or the other she … Nothing made her happier that on the very finish, this lady who gave principally her grownup life … She didn’t work, she simply raised the household, these three sisters that Pete talked about, the brother, the sister … I’d wish to assume that she was saying, “I did it,” was one way or the other she purchased all 5 of us plus her husband into this small 300 sq. foot reminiscence care room for her closing moments.

Jim Biggs (19:58):

If you already know my mother, Pete, you already know she’s on the market listening. That’s her story and he or she’s sticking with it. However the level is you simply don’t know, and also you simply by no means … I’ve seen too many members of the family over time simply throw within the towel. It’s identical to, “She now not acknowledges me. What’s the purpose of me coming right here?” Michael, all of the listeners, encourage you simply proceed to do these issues. You make a distinction. They might not at all times have the ability to articulate it. However I feel at a sure degree, they perceive at that emotional degree, they make that connection that there are individuals who come, there are individuals who care and that’s what’s most vital.

Dr. Heidi Syropoulou (20:38):

It’s a terrific story, Jim. It jogs my memory that the extra you’ll be able to cope with this complete state of affairs with humor, the higher off you could be. It’s very arduous to seek out humor throughout this. However truly there might be humorous moments, so please chuckle at them. I had an uncle who died of Alzheimer’s illness, and he lived in a reminiscence care unit for his final 12 months of life. He had labored for the State Division for his complete life and had lived everywhere in the world and been in cost in lots of financial applications. He labored for the AID growth program for the US authorities. He was accustomed to telling individuals what to do.

Dr. Heidi Syropoulou (21:20):

Within the reminiscence care unit, he would stroll round and had like virtually a harem of different girls who had Alzheimer’s illness. They adopted him round they usually had notebooks and pencils, and he was continually telling them that they have been going to have a gathering they usually wanted to take notes. The reminiscence care unit completely liked it. We might go in and we might see him and he’d be very severe they usually’d be taking notes and he liked it. So something to maintain individuals from being too agitated. It’s okay to reside this fantasy wherever you’re, nevertheless it’s good to chuckle. It’s actually good to chuckle.

Jim Biggs (21:58):

I might share the one story. The retired Admiral. I used to work at a spot known as Ginger Cove, Annapolis, Maryland. I do know it’s it sounds terrible. However he was in a wheelchair, and the wheelchair had tipped over. So we didn’t know this. We have been down the corridor. Matter of truth, I used to be speaking to his spouse on the time. We had the nurse there and we hear this, “Man overboard. Man overboard.” She goes, “That sounds just like the Admiral’s voice.” I’m like, “Let’s go.” So we walked down the corridor and he was there. He’s like, “Man overboard.” So we helped him up. He was high quality. No person bought harm. However the spouse simply thought that was hilarious. The primary phrases out of her mouth was, “Oh, I can’t wait to share this story with the women.” [inaudible 00:22:52], you’re completely proper. It’s arduous. It’s tragic. However as you mentioned, there’s nonetheless some smiles if you already know the place to look.

Peter Panageas (23:01):

Properly guys that’s yeah, I’ll, Michael and Heidi, I’ll allow you to each in, on this little secret and the hundreds of thousands of listeners listening to our podcast. Understanding Jimmy so long as I’ve recognized Jimmy, he most likely deserved these belts. I say that lovingly as my brother-in-law, and I like him dearly. He is aware of that.

Peter Panageas (23:22):

So look, I’m going to shift right here. Heidi, I’m going to return again to you right here. I feel we do want to debate, and it’s an vital factor is the primary FDA accredited remedy. Are you able to give us your ideas on this remedy? I do know there’s some controversy round it. Like to get your perception on that.

Dr. Heidi Syropoulou (23:37):

Certain. Nice. Properly, let me provide you with a bit little bit of historical past behind aducanumab, which the model identify is Aduhelm. In June 2021, the FDA accredited the primary new Alzheimer’s therapy in virtually twenty years. We don’t need to give individuals the impression there had been no remedies earlier than, however they have been 20 years previous and truthfully not significantly efficient, however that is the primary in virtually twenty years.

Dr. Heidi Syropoulou (24:06):

It was developed by two pharmacy firms known as Biogen and Eisai. Primarily it’s a drug that’s a part of a category of medicine known as monoclonal antibodies. They assault a protein that accumulates in your mind. Keep in mind, I used to be speaking about professor and Dr. Alzheimer mentioned on the pathology of the mind of the girl, he did an post-mortem on, they discovered amyloid plaques within the mind, which is an accumulation of this protein amyloid. Primarily this monoclonal antibody, Aduhelm, attaches to this protein within the mind, which then theoretically promotes an immune system response on the individual to take away that protein. That’s the science behind what the drug does.

Dr. Heidi Syropoulou (24:51):

Should you return a few years earlier than that, that was 2021 that the FDA accredited this … In 2019 Biogen was within the means of their scientific trials, they usually had truly halted two scientific trials in sufferers. These trials have been completed on early stage Alzheimer’s sufferers and even sufferers which have type of pre-dementia. It’s known as delicate cognitive impairment, however they needed to maintain these two research after an unbiased information monitoring committee discovered that they have been unlikely to sort of meet their endpoint, and the endpoint being that there can be an enchancment within the affected person’s cognition. However later Biogen then mentioned one of many trials did in actual fact meet its endpoint objectives, seeing a discount in that cognitive decline. This was with a really excessive dose.

Dr. Heidi Syropoulou (25:37):

After receiving the drug’s advertising utility in 2021, the FDA advisory board … Take note it is a group of physicians and specialists within the discipline of that illness course of and analysis typically who advise the FDA on medicine. Often the FDA pays consideration to its advisors. However anyway, the advisory panel have been very uncertain of the proof of the efficacy of the drug. 10 of the 11 members voted no for the drug, however in fact they’re not those which are approving it, they’re simply advising. 10 out of the 11 mentioned, “No, we don’t advocate this drug. We don’t assume it’s going to be efficacious. There’s not sufficient proof but.” Regardless of the panel’s suggestion, the FDA accredited the drug underneath this new coverage they’ve known as accelerated pathway approvals the place approval could be given if a objective could be achieved, is felt to be prone to predict scientific profit for the sufferers. The issue is there isn’t a variety of proof but on the chance of Aduhelm translating into significant profit for sufferers with Alzheimer’s illness.

Dr. Heidi Syropoulou (26:50):

It’s price noting that one other pharmaceutical firm known as Elan a few years in the past, I need to say 2012 or 2013, additionally did related work on a monoclonal antibody check that focused and tried to cut back amyloid within the mind, and it didn’t translate into scientific profit. It’s one factor to say we are able to do away with the protein, it’s one other factor to say that there’s truly going to be a change in your skill to assume. We don’t know that. So it was such a kerfuffle that three members of that panel resigned. There was actually fairly an outcry inside say the medical health insurance trade members … You identify it, individuals have been upset. Some nonetheless felt that we nonetheless want a therapy so we have to put it ahead.

Dr. Heidi Syropoulou (27:37):

The opposite drawback is that the drug value $55,000 a 12 months. For an unproven therapy, that is scary to individuals. We’re speaking hundreds of thousands and hundreds of thousands and hundreds of thousands of people that may very well be utilizing this. So now you’re seeing the price of well being care simply undergo the roof due to course, it’s not simply your well being premiums that’s going to go up. It’s vital. We all know now, it’s been a 12 months, as of final January, Biogen has reduce the price of the drug all the way down to $28,000. Most insurance coverage firms are saying, “We’re not approving this as an everyday routine drug. We’re contemplating it investigational.” Medicare simply got here out in January and mentioned primarily, “We are going to provide it to Medicare members, however you must be concerned in a scientific trial.” So that they put fairly a couple of restrictions on it, which I feel is suitable. That’s the story of Aduhelm. Extra to return. We will see.

Peter Panageas (28:35):

Yeah. Thanks. I do know it’s comparatively new, and I do know that there’s an extended journey forward of that, however I assume lets say it’s a step. Mike, let me ask you this query after which Heidi and Jim, I’d like to get your perspective on this as properly. So Mike, you talked about earlier to our viewers that you just’ve taken a step along with your dad now to place him right into a … At present’s his first day, proper?

Mike Burnham (28:55):

Sure.

Peter Panageas (28:55):

His first day. It’s a-

Mike Burnham (28:56):

It’s a daycare program.

Peter Panageas (28:57):

It’s a daycare program facility. You carry him there, he spends the day and comes again dwelling. How did you guys get thus far? What sort of analysis did you do? What sort of avenues did you go all the way down to sort of get thus far? Dr. Syropoulos and Jim, if I might ask you additionally when you can share with our viewers after Mike talks about his journey right here and the way he bought thus far in his resolution and among the assets he tapped into, if you too can share with our viewers, another meals for thought concepts, assets that they need to be contemplating as they’re going by this journey. So Mike, we’d love to listen to your story.

Mike Burnham (29:36):

Certain. I feel as I discussed, step one that mother took was permitting somebody to return into the home to provide her some respite care. Once more, it was solely two to 3 hours at a time, however that actually was greater than she was getting simply as late as November of final 12 months. When my sister, my mother and I bought collectively, we began to speak about long term plans. We began to look into different choices. One in all them was Veterans Affairs as a result of my dad served proudly within the Air Drive again within the mid-60s. On the time after we began that course of with the VA system, I feel he was categorized type of on the center of the dimensions for eligibility. I feel in the event that they checked out him right now, they could reclassify him and say that perhaps he’s eligible for one thing there.

Mike Burnham (30:37):

We’re type of phases. If mother want a process, what would that plan seem like? There’s a VA hospital that’s very near my dad and mom’ dwelling, that that might be an possibility. However as issues actually have progressed over the previous six months, I’ve spent various weeks or weekdays right here speaking with individuals, visiting these services and making an attempt to resolve with my mother what’s the most suitable choice for us. On the time, long-term care I feel remains to be on the horizon. However these day applications, I feel as Jim talked about, stimulation, not being along with your TV or it’s very passive. He spends a variety of time watching TV. We visited the Cheer Middle, we visited a pair nursing houses and we visited the Easterseals Program. They’re very shut by, native to my mother and pop’s home. I began to notice that there are some actually good applications on the market that for a, I’d say it’s a decrease value possibility, which is only a daycare sort of program, the advantages to each of them may very well be vital.

Mike Burnham (31:58):

My dad might get some stimulation. There are associates that he grew up with which are in that program as a result of it’s a small city, and a variety of the individuals nonetheless caught round in that small city so there may be some identify recognition or friendship recognition or making new friendships for dad. Plus, all of the applications that they’ve for the sufferers there that might be considerably higher than simply parking himself in entrance of the TV and falling asleep. It could provide a possibility for mother to have a extra vital break through the day. I nonetheless say we’re perhaps within the center phases of our journey, however we’re actually additional alongside than we have been a 12 months in the past. I thank my sister and my mother that we got here collectively to start out planning this out and realizing a few of these objectives.

Peter Panageas (32:51):

Jim, Dr. Syropoulos, like to get some perception from you as properly. Thanks, Mike.

Dr. Heidi Syropoulou (32:57):

I’d say two very particular items of knowledge that I feel are useful. Once I was taking good care of sufferers with dementia, I at all times really useful one e book. This e book actually to me is the gold customary for all caregivers who’re taking good care of sufferers who’ve dementia. The title of the e book is The 36-Hour Day. Because it implies, to a caregiver the day is just not 24 hours, it’s 36 hours. This e book is about 40 years previous. It was written by a geriatric psychiatrist out of Johns Hopkins named Peter Rabins and a nurse educator named Nancy Mace. Peter Rabins and Nancy Mace. It’s most likely on its sixth version at this level. It’s an absolute gold mine of knowledge. Very straightforward to learn. It must be the useful resource e book that each one caregivers flip to once they’re making an attempt to determine about dementia and Alzheimer’s.

Dr. Heidi Syropoulou (34:00):

I do know, many occasions you’ll assume this could be a terrific e book within the very starting phases, however I typically would have caregivers come again to me and say, “Oh wow. I reread that chapter on urinary incontinence. It was unbelievable.” Or two years later, “I reread that chapter on having youngsters in the home.” I imply, it’s got so many items of knowledge. I like studying it only for myself. I don’t have anybody but in my fast household has Alzheimer’s. That’s info primary. That e book, The 36-Hour Day, it’s a paperback. You will get it anyplace.

Dr. Heidi Syropoulou (34:36):

I feel the opposite piece of knowledge is that if your beloved has a Medicare Benefit plan, not common Medicare, however a Medicare Benefit plan, most Medicare Benefit plans have 24-hour hotline nurses and case managers and social employees. When you’ve got questions or issues, when you don’t know the way to do that … “How can I discover an grownup daycare heart? The place are assets? Your Medicare Benefit plan case managers are a absolute wealth of knowledge for individuals. I’d urge individuals to make use of that useful resource,

Peter Panageas (35:13):

Go forward, Jim.

Jim Biggs (35:14):

Pete, once more, I at this level, inform individuals get both a pencil out or fireplace up their web as a result of a lot of the stuff I refer individuals to can be found on-line. Primary, to me the gold customary is the Alzheimer’s Affiliation. That’s www.alz.org. It’s accessible in I feel as much as 17 or 20 totally different languages. When you’ve got a member of the family typically who may be first era US and the caregiver’s second era, that you must get that info in a well-translated deck. The Alzheimer’s Affiliation to me is the gold customary.

Jim Biggs (35:55):

The federal government. It’s simply alzheimer’s.gov for the federal government, for the suffix. It’s simply a variety of authorities assets which were pooled collectively.

Jim Biggs (36:05):

The third one is dementiasociety.org. Once more, the Alzheimer’s Affiliation can virtually be overwhelming. Dementia Society simply, it looks like it’s simpler to make that reference to a few of these assets. You don’t must sort of undergo the Alzheimer’s Affiliation could be a little bit overwhelming simply by way of the group of the web site.

Jim Biggs (36:29):

Then once more, assuming most of your listeners are Blue Cross Blue Defend, your Well being of America articles which are accessible on-line, there’s a variety of good assets and simply a variety of good info in there as properly. So I feel Blue Cross Blue Defend. Once more, it’s good, it’s informative, and I feel it might be an attention-grabbing complement to this specific podcast.

Peter Panageas (36:52):

Yeah. For our listeners, we’ll be certain that we put this degree of element in our present notes as properly as a result of there’s a variety of invaluable assets on the market Jim, Heidi and Michael simply spoke about. So Dr. Syropoulos, let me ask for our viewers questioning what if any preventative measures could be taken with reference to Alzheimer’s?

Dr. Heidi Syropoulou (37:12):

That’s a terrific query. It’s a quite common query for sufferers. All of us need to know, all of us are conscious of the illness and all of us are extraordinarily focused on making an attempt to determine, “How can I defend myself from getting this illness?” I need to simply degree set at first and ensure individuals perceive you’re going to see a variety of issues within the information and a variety of promoting for this train and that meals and this complement, no matter it’s. The underside line is there may be nonetheless no magic bullet. There isn’t a particular sort of meals or particular train, however there was a variety of analysis. What we do know is that the underside line is that adhering to the identical suggestions we’re all speculated to already adhere to to forestall diabetes, to forestall congestive coronary heart failure and coronary artery illness and stroke.

Dr. Heidi Syropoulou (38:05):

In different phrases, don’t smoke, train recurrently and persistently, preserve a great weight, not too heavy and never underweight, preserve and be concerned mentally and socially. That’s actually crucial. Don’t isolate your self. Then handle these sorts of medical issues apart from dementia that arises. Should you’ve bought hypertension, deal with it. Should you’ve bought excessive ldl cholesterol, deal with it. We do know that many individuals have amyloid accrued of their our bodies. It doesn’t essentially imply you might have Alzheimer’s illness.

Dr. Heidi Syropoulou (38:42):

We additionally know, curiously sufficient, we’ve got a variety of genetic info that there are particular genetic predispositions to having Alzheimer’s illness. About 90% is what we name type of nonfamilial which means everybody’s just about the identical threat of getting it. However even inside that group, there are some genes that will make you extra prone to get Alzheimer’s.

Dr. Heidi Syropoulou (39:06):

Then there are about 10% of sufferers with Alzheimer’s who’ve a really excessive genetic prediposition. They’ve a few totally different genes which are coded for that trigger many members of their household to have Alzheimer’s. It’s attention-grabbing, even having a genetic threat that’s larger than regular, when you throughout your life have had adhered to those fantastic life-style modifications of not smoking and exercising and holding your weight down and consuming an exquisite weight loss plan of inexperienced leafy greens and grains, you’ll be able to decrease your threat of Alzheimer’s illness even when you might have the next genetic threat.

Dr. Heidi Syropoulou (39:41):

So no magic bullet, however do the sorts of issues we’ve been telling all people to do all these years anyway. You possibly can’t sit round and eat bacon and eggs on a regular basis on your grownup life and anticipate that you just’re not going to have an issue. It’s my massive pearl of knowledge there.

Peter Panageas (39:57):

Properly mentioned. Very, very properly mentioned. Look, I can’t thank the three of you sufficient for right now. It’s such a related matter. Coming from a scientific perspective to clearly the transition from dwelling to facility, after which clearly Mike being a caregiver. Superb work by the three of you. Look, let me simply ask every of you earlier than I present my closing feedback … I do that with all of our company … If there’s anybody or two or three issues that you just’d wish to share with our viewers, what would it not be? Dr. Syropoulos, I’m going to start out with you first.

Dr. Heidi Syropoulou (40:29):

I’d say primary … These are all directed to caregivers … I’d say primary, don’t neglect that the behavioral points that provide you with dementia are actually indicators of the illness, that the individual isn’t essentially making an attempt to hassle you. That’s simply probably the most difficult issues with behavioral issues is the caregivers typically really feel as if they’re deliberately bothering them. It’s identical to when you have chest ache, you might have coronary heart illness. You may have a behavioral drawback when you might have Alzheimer’s. That’s primary.

Dr. Heidi Syropoulou (41:05):

Quantity two, caregivers, please be variety to your self. You’ve taken on a brand new job and also you’re studying the brand new job and also you’re going to proceed to study. It’s a must to be variety to your self, and you must loop in as many members of the family that will help you as you’ll be able to.

Dr. Heidi Syropoulou (41:22):

Three is to attempt as arduous as you’ll be able to to seek out the humor as a result of there might be humor. These are my three items of recommendation I’d say.

Peter Panageas (41:32):

Thanks, Heidi. Jim?

Jim Biggs (41:33):

Pete, that’s like following the Rolling Stones as a result of all the things’s spinoff from that. That’s actually an ideal reply. I gained’t waste your time or the listeners’ time enhancing upon it. Simply return, hit rewind button, take heed to Dr. Heidi once more.

Peter Panageas (41:52):

Properly mentioned. Mike?

Mike Burnham (41:54):

Certain. I feel it’s been tough to see my dad who was such a powerful, good, stoic, caring individual regress on account of this illness. However I feel the one factor is he can’t assist it. The affected person can’t assist it, and he’s going to proceed down this path. Caregivers must know that they’re being considered in order that they want your love encouragement, assist, time. I’d counsel if there’s anybody on the market that you already know is offering care to somebody with Alzheimer’s, attain out to them. They need to know they’re not alone. They need to know they’re being considered. Should you can, donate a few of your time to the caregiver. It’s invaluable, and most of all, it’s so sincerely appreciated.

Peter Panageas (42:48):

Thanks, Mike. To group Burnham, Michael, Karen, and the children. To Sandy [Wilgus 00:44:59]. To Cindy [Masentelli 00:44:59]?

Mike Burnham (42:59):

That’s proper. And her husband, Brent.

Peter Panageas (43:02):

And her husband, Brent, for being there and taking good care of dad. Unimaginable braveness, power. To Jim and Tim Biggs and to Sue and Nancy and Maryann Biggs and all of the unbelievable work you probably did for taking good care of mother and pop, you guys have been all angels. Notably the three ladies have been simply wonderful. To the hundreds of thousands of listeners who’re listening to this who’re going by the identical journey that the Burnhams are going by and that the Biggs household has gone by, you’re all doing God’s work. So with that, I can not thank our company sufficient. Dr. Syropoulos, Mike and Jim, you’re simply wonderful. Thanks a lot for being with us right now. Actually admire it.

Dr. Heidi Syropoulou (43:43):

Thanks, Peter.

Mike Burnham (43:43):

Thanks, Peter.

Jim Biggs (43:44):

Thanks, Pete.

Peter Panageas (43:45):

To our listeners, thanks. I hope you’ve loved our dialogue. Hopefully for these of you who’re going by this journey, among the suggestions that you just obtained right now goes to be useful to every of you and your households. Take a look at the present notes for extra info at insights.ibx.com. That’s insights.ibx.com. Thanks once more for becoming a member of us gang, and we’ll see you subsequent month.

Peter Panageas (44:12):

For a lot of of you who’ve listened to our preliminary podcast, you’ll know the private story of Mike Burnham’s father, Claude “Skip” Burnham and his battle and household’s battle with Alzheimer’s. It’s unhappy to share this with all people right here, however we thought it was vital to provide all people an replace previous to listening to half two that sadly Mr. Burnham has handed. Household are all doing properly. Companies have been performed this previous weekend, and Mr. Burnham is in a significantly better place right now. In order you pay attention and put together for half two of our podcast, I needed to verify all people had an replace on the standing of Mr. Burnham. On behalf of all people right here at Independence and going out to the Burnham household and all of our listeners, our prayers and ideas are collectively with you and your loved ones throughout this robust time. Thanks.

RELATED ARTICLES

Most Popular

Recent Comments