Navigating the Difficult Challenges of Alzheimer’s, Part II

Peter Panageas (00:07):

In the event you’re searching for well timed, related conversations about an important subjects in well being protection, you’ve come to the appropriate 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 business 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 friends 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 in the present day is Dr. Heidi Syropoulos, a medical director at Independence Blue Cross, who joined our staff after practising geriatrics for practically 30 years. We even have Mike Burnham. Mike is an in depth colleague of [inaudible 00:01:13] husband and a caregiver to his dad who’s dwelling 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 in the present day.

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 unique podcast a couple of week in the past, there was an replace that we thought was essential to share with all of you with regard to Michael’s father. Mike, I’m going to name on you right here in a minute, however I assumed it was additionally vital to honor the legacy of two unimaginable folks that 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 might be in all probability coping with this in some style that Marilyn Biggs was an unimaginable lady. A lady who was God loving, who cooked each day of her life, who cleaned each day of her life, who liked and cared for her husband and her little kids, 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, however 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 instances 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 way of this actually distinctive and difficult time. It was one thing that I discovered fairly profound as a solution to join together with her mother in ways in which helped her navigate by way of this journey. Michael, if you happen to may, share with our viewers somewhat bit about your dad and what he was and what he did and form of the place you sit in the present day.

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 in the present day to point out folks that 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 folks I do know, he needed to go to the College of Delaware when he graduated highschool. He loved the social gathering facet 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 kind of picked up the power to repair rattling close to every thing from vehicles to family home equipment to plumbing, flooring. I imply, the person may 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 additionally 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 exhausting employee. Whenever 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 residence till 6:00 or later. My mother was a nurse so their schedules typically didn’t jive. He’d must do lots of the issues to handle me and my siblings. He did all he may 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 stated, “I didn’t even know baseball,” however he liked to be with us to teach my brother and I in baseball, my sister in softball. Actually supported us youngsters. He would come to all our video games. Even when we weren’t enjoying, 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 try to make it to our video games, and I liked him for that.

Mike Burnham (05:10):

I feel the most effective factor about him was mother. He would typically say that she was the most effective 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 realize if you come residence you’ve bought your companion there to at all times be your rock.

Mike Burnham (05:45):

Like I stated, he’s one of many smartest folks that I do know. We may 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 the right way to 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 the right way to play poker, issues he picked up within the Air Drive, and nobody may beat him at that both. So crossword puzzles and phrase finds and pondering kind actions. Trivial Pursuit. My gosh, this man was only a strolling encyclopedia about data. It’s good to have these experiences and recollections to know who dad was as a result of he’s undoubtedly a special particular person now.

Mike Burnham (06:37):

I discussed the prognosis for dad was again in, the official prognosis, I feel was 2016. However once more, we had began to see lots 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 all in favour of studying, not be all in favour of 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 most effective that I’ve seen dad in weeks. He was with it, he was having fun with himself, he was speaking. We had been like, “Oh man, possibly this daycare factor was nice for him. It was stimulatory. Perhaps it’s what he wanted.” Then the subsequent day he wouldn’t get off the bed. The subsequent 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 exhausting 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 prior 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 instances, and we made the choice to have them begin to change into extra current in his day by day care and assist us handle it. We’re nonetheless hopeful that the hospice will 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 will’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 might be snug and provides us some moments of readability. I feel that’s what I’m trying ahead to is simply to have instances after I come to go to him that he’ll nonetheless acknowledge me, and we would discover one thing we will 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 had been speaking. We weren’t speaking about something vital, however he reached out and grabbed my hand. I knew that that was his method of telling you that he knew who I used to be and that he liked me. What extra may you ask for in that second? Simply to know that your dad nonetheless cares a lot for you and if he may, he would do something for us. I nonetheless assume now we have 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 youngsters, the legacy that you just’ll proceed in honoring your dad on this subsequent section that you just’re all going by way of, I do know can be one thing that he’ll be so happy with you. Realizing you and never understanding your father, however understanding who you might be and your character and what you’re about and your youngsters 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 method and your loved ones’s method as you undergo this subsequent section.

Mike Burnham (11:09):

Thanks, Peter. I admire that.

Peter Panageas (11:13):

I’ll simply echo what I stated earlier after I talked about what was particular to Mary as she was going by way of this journey together with her mother. She held her hand when there was instances that she simply didn’t know what to say or what to do. Simply by holding her hand, she felt a stage of consolation not just for herself as her daughter, however she is aware of it meant rather a lot 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 way of 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 plenty of issues right here. I’d be remiss if I didn’t not less than share with you three, and Jimmy is aware of this as a result of it was his mother and pa … I occurred to be married to Jim’s youngest sister Mary. Once we discuss taking these steps from residence to assisted dwelling and also you speak in regards to the paperwork and the legalities and the group related to that and attempting to make all the appropriate strikes. I take 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 stated, there have been some issues he did spot on and there have been issues that he thought he might 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 could not have been the appropriate transfer. However it was all performed in love and group and construction and attempting to do all that. He had these three daughters and also you talked about it, a staff. Staff Burnham floating round your dad proper now, Mike, and your mother. Staff Burnham is and cousins Burnhams whoever they is perhaps, they’re all there serving to out. You’ve gotten Sue and Nancy and Maryann serving to mother each day and serving to dad and attempting to navigate, and Jimmy from China offering that. There’s this international staff, if you’ll, serving to. Even that, with all that, with all that you just’re doing as staff Burnham and all as staff Biggs did and superb 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 had been simply speaking about. Your mother going out and getting footwear, Mr. Biggs simply going out to get a haircut. Little issues like that had 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 pa had been a actuality of in all probability what lots of our listeners are having to form of navigate by way of each day. I couldn’t agree extra, Heidi, along with your counsel and proposals on all the suitable paperwork and authorized paperwork. It’s vital. Jim, I’m going to ask you, when you’ve got new sufferers coming in, do you see that as a standard thread, that lots of the paperwork might not be filed appropriately or simply all structured? Is that one thing that you just see typically?

Jim Biggs (14:00):

Normally, Pete, it’s performed, however 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 in all probability 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 particular person, however we actually wish to guarantee that energy of lawyer understands, fills in any of the blanks on the paperwork that has not been accomplished. You undoubtedly wish to ensure the i’s are dotted and t’s are crossed as a result of it undoubtedly comes right down to … You heard Michael discuss it earlier … You’ve bought to have a plan. As we discovered, everyone is aware of that quote from Mike Tyson, “You’ve gotten an incredible plan till I punch them within the nostril,” and Alzheimer’s is Mike Tyson. It would hit you within the nostril. It’s similar to, “Wow, what simply occurred there?”

Jim Biggs (15:03):

The household wants to speak, must adapt. From a supplier perspective, we acknowledge that I feel, Pete, what you noticed with the three sisters is somewhat 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 folks which can be coming in. I didn’t wish to be that man coming in from China immediately 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 person will get their method on a regular basis, however it’s simply vital that these voices, folks, 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 attempting to do for our mother,” or what you’re attempting to do in 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 guarantee that once more, good, clearcut consensus. These issues should be performed 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 stated, Jim, and I’ll simply say it once more, Mike, to staff Burnham and the work that you just all are doing and positively to staff Biggs and the work that they did, these are two examples of a household rallying round and attempting to handle a really, very difficult scenario. I feel our listeners can all be taught from the unimaginable work that Michael you and your loved ones are doing and pouring into your dad and mother proper now and positively the unimaginable work that Jim you and your loved ones did and taking good care of mother and pa. 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 mission I used to be engaged on over there was delayed. Full sidebar, however it’s simply to make my sisters snort. My mother at all times swore she was psychic. She simply, “I’ve this magical skill,” and occasionally she would decide up the cellphone. She’d hear the cellphone ring after which, “Oh, that’s Janice calling.” Generally 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 mission bought canceled in China. I made a spot determination simply, “Hey, I’m going to seize a fast bag. I’m not going to pack. I’m not going to get presents.” I bought actually the battle that bought me into Newark Christmas morning. Simply wasn’t deliberate for, it was similar to, “Hey,” and I used to be truly going to see my daughter and my grandkids when Susan referred to as and she or he stated, “We bought some horrible information. Mother was identified with the liver most cancers, pancreatic most cancers.” She goes, “You’re not going to have the ability to make residence.” I’m like, “Oh, I’ll be residence 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 possibly 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 mostly 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 instances like my mother, however she was laying there and we’re all speaking. That is form of what I imply about simply you wish to be there since you simply by no means know when these moments occur. Abruptly I hear this, “Jimmy, Jimmy,” and that is from a girl who hadn’t actually acknowledged her youngsters for a pair years. So I came visiting and she or he stated, “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 little one, however it was the one factor on the planet that she may have stated that she knew I used to be there. In some way at that stage, she fought by way of regardless of the Alzheimer’s had performed to her. After all, later that night time it was her ultimate phrases had been, “I did it, I did it.” As I form of espoused on the eulogy, it’s like we’re not fairly certain what she was pondering at that second. She was beneath some hospice care, so there’s morphine, there’s the Alzheimer’s, however I’d prefer to assume that by some means 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 prefer to assume that she was saying, “I did it,” was by some means she purchased all 5 of us plus her husband into this small 300 sq. foot reminiscence care room for her ultimate moments.

Jim Biggs (19:58):

If you realize my mother, Pete, you realize she’s on the market listening. That’s her story and she or he’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 through the years simply throw within the towel. It’s similar to, “She 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 could not at all times have the ability to articulate it. However I feel at a sure stage, they perceive at that emotional stage, 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 an incredible story, Jim. It jogs my memory that the extra you may cope with this complete scenario with humor, the higher off you might be. It’s very exhausting to search out humor throughout this. However truly there can be humorous moments, so please snort 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 total life and had lived everywhere in the world and been in cost in lots of financial packages. He labored for the AID growth program for the US authorities. He was accustomed to telling folks what to do.

Dr. Heidi Syropoulou (21:20):

Within the reminiscence care unit, he would stroll round and had like nearly a harem of different girls who had Alzheimer’s illness. They adopted him round they usually had notebooks and pencils, and he was always telling them that they had been going to have a gathering they usually wanted to take notes. The reminiscence care unit completely liked it. We’d 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 folks from being too agitated. It’s okay to dwell this fantasy wherever you might be, however it’s good to snort. It’s actually good to snort.

Jim Biggs (21:58):

I may share the one story. The retired Admiral. I used to work at a spot referred to 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 had been down the corridor. Matter of reality, 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 tremendous. No one 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 exhausting. It’s tragic. However as you stated, there’s nonetheless some smiles if you realize 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. Realizing Jimmy so long as I’ve recognized Jimmy, he in all probability deserved these belts. I say that lovingly as my brother-in-law, and I really 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 come back 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 somewhat little bit of historical past behind aducanumab, which the model identify is Aduhelm. In June 2021, the FDA accredited the primary new Alzheimer’s remedy in nearly 20 years. We don’t wish to give folks the impression there had been no remedies earlier than, however they had been 20 years previous and truthfully not significantly efficient, however that is the primary in nearly 20 years.

Dr. Heidi Syropoulou (24:06):

It was developed by two pharmacy corporations referred to as Biogen and Eisai. Primarily it’s a drug that’s a part of a category of medication referred to as monoclonal antibodies. They assault a protein that accumulates in your mind. Bear in mind, I used to be speaking about professor and Dr. Alzheimer stated on the pathology of the mind of the lady, 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 particular person to take away that protein. That’s the science behind what the drug does.

Dr. Heidi Syropoulou (24:51):

In the event 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 had been performed on early stage Alzheimer’s sufferers and even sufferers which have kind of pre-dementia. It’s referred to as gentle cognitive impairment, however they needed to maintain these two research after an impartial knowledge monitoring committee discovered that they had been unlikely to form of meet their endpoint, and the endpoint being that there can be an enchancment within the affected person’s cognition. However later Biogen then stated one of many trials did in actual fact meet its endpoint targets, 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 into account it is a group of physicians and specialists within the discipline of that illness course of and analysis typically who advise the FDA on medication. Normally the FDA pays consideration to its advisors. However anyway, the advisory panel had 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 can be approving it, they’re simply advising. 10 out of the 11 stated, “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 advice, the FDA accredited the drug beneath this new coverage they’ve referred to as accelerated pathway approvals the place approval might be given if a purpose might be achieved, is felt to be prone to predict scientific profit for the sufferers. The issue is there isn’t lots of proof but on the probability 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 referred to as Elan a few years in the past, I wish to say 2012 or 2013, additionally did related work on a monoclonal antibody take a look at that focused and tried to scale back amyloid within the mind, and it didn’t translate into scientific profit. It’s one factor to say we will eliminate 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, folks had been upset. Some nonetheless felt that we nonetheless want a remedy so we have to put it ahead.

Dr. Heidi Syropoulou (27:37):

The opposite downside is that the drug value $55,000 a 12 months. For an unproven remedy, that is scary to folks. 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 minimize the price of the drug right down to $28,000. Most insurance coverage corporations 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 stated primarily, “We are going to supply it to Medicare members, however it’s a must to be concerned in a scientific trial.” In order that they put fairly just a few restrictions on it, which I feel is suitable. That’s the story of Aduhelm. Extra to come back. We will see.

Peter Panageas (28:35):

Yeah. Thanks. I do know it’s comparatively new, and I do know that there’s a protracted journey forward of that, however I assume let’s imagine 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 … Right this moment’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 deliver him there, he spends the day and comes again residence. How did you guys get so far? What kind of analysis did you do? What kind of avenues did you go right down to form of get so far? Dr. Syropoulos and Jim, if I may ask you additionally if you happen to can share with our viewers after Mike talks about his journey right here and the way he bought so far in his determination and a few of the sources he tapped into, if you too can share with our viewers, another meals for thought concepts, sources that they need to be contemplating as they’re going by way of 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 come back into the home to offer her some respite care. Once more, it was solely two to a few hours at a time, however that definitely 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 run 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 kind of on the center of the dimensions for eligibility. I feel in the event that they checked out him in the present day, they may reclassify him and say that possibly he’s eligible for one thing there.

Mike Burnham (30:37):

We’re kind of phases. If mother want a process, what would that plan appear to be? There’s a VA hospital that’s very near my dad and mom’ residence, that that might be an choice. However as issues actually have progressed over the previous six months, I’ve spent plenty of weeks or weekdays right here speaking with folks, visiting these amenities and attempting to determine with my mother what’s the best choice for us. On the time, long-term care I feel continues to be on the horizon. However these day packages, I feel as Jim talked about, stimulation, not being along with your TV or it’s very passive. He spends lots of time watching TV. We visited the Cheer Heart, we visited a pair nursing properties and we visited the Easterseals Program. They’re very shut by, native to my mother and pa’s home. I began to notice that there are some actually good packages on the market that for a, I’d say it’s a decrease value choice, which is only a daycare form of program, the advantages to each of them may very well be vital.

Mike Burnham (31:58):

My dad may get some stimulation. There are associates that he grew up with which can be in that program as a result of it’s a small city, and lots of the folks nonetheless caught round in that small city so there is perhaps some identify recognition or friendship recognition or making new friendships for dad. Plus, all of the packages 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 supply a possibility for mother to have a extra vital break through the day. I nonetheless say we’re possibly within the center phases of our journey, however we’re definitely additional alongside than we had been a 12 months in the past. I thank my sister and my mother that we got here collectively to begin planning this out and realizing a few of these targets.

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. After I was taking good care of sufferers with dementia, I at all times beneficial one e book. This e book actually to me is the gold normal 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 just isn’t 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 in all probability on its sixth version at this level. It’s an absolute gold mine of knowledge. Very straightforward to learn. It needs to be the useful resource e book that each one caregivers flip to after they’re attempting to determine about dementia and Alzheimer’s.

Dr. Heidi Syropoulou (34:00):

I do know, many instances you’d assume this is able to be an incredible 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 unimaginable.” 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 instant household has Alzheimer’s. That’s data primary. That e book, The 36-Hour Day, it’s a paperback. You may get it wherever.

Dr. Heidi Syropoulou (34:36):

I feel the opposite piece of knowledge is that if the one you love 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. You probably have questions or considerations, if you happen to don’t know the way to do that … “How can I discover an grownup daycare middle? The place are sources? Your Medicare Benefit plan case managers are a absolute wealth of knowledge for folks. I’d urge folks 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 folks get both a pencil out or hearth up their web as a result of a lot of the stuff I refer folks to can be found on-line. Primary, to me the gold normal is the Alzheimer’s Affiliation. That’s www.alz.org. It’s out there in I feel as much as 17 or 20 totally different languages. You probably have a member of the family typically who is perhaps first era US and the caregiver’s second era, it’s worthwhile to get that data in a well-translated deck. The Alzheimer’s Affiliation to me is the gold normal.

Jim Biggs (35:55):

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

Jim Biggs (36:05):

The third one is dementiasociety.org. Once more, the Alzheimer’s Affiliation can nearly be overwhelming. Dementia Society simply, it looks as if it’s simpler to make that reference to a few of these sources. You don’t must form of undergo the Alzheimer’s Affiliation generally is a little bit overwhelming simply when it comes to the group of the web site.

Jim Biggs (36:29):

Then once more, assuming most of your listeners are Blue Cross Blue Protect, your Well being of America articles which can be out there on-line, there’s lots of good sources and simply lots of good data in there as properly. So I feel Blue Cross Blue Protect. Once more, it’s good, it’s informative, and I feel it could be an fascinating complement to this specific podcast.

Peter Panageas (36:52):

Yeah. For our listeners, we’ll ensure we put this stage of element in our present notes as properly as a result of there’s lots of helpful sources 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 might be taken with regard to Alzheimer’s?

Dr. Heidi Syropoulou (37:12):

That’s an incredible query. It’s a quite common query for sufferers. All of us wish to know, all of us are conscious of the illness and all of us are extraordinarily all in favour of attempting to determine, “How can I shield myself from getting this illness?” I wish to simply stage set initially and ensure folks perceive you’re going to see lots of issues within the information and lots 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 any particular kind of meals or particular train, however there was lots of analysis. What we do know is that the underside line is that adhering to the identical suggestions we’re all presupposed to already adhere to to stop diabetes, to stop congestive coronary heart failure and coronary artery illness and stroke.

Dr. Heidi Syropoulou (38:05):

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

Dr. Heidi Syropoulou (38:42):

We additionally know, apparently sufficient, now we have lots of genetic data that there are specific genetic predispositions to having Alzheimer’s illness. About 90% is what we name kind of nonfamilial which means everybody’s just about the identical danger of getting it. However even inside that group, there are some genes which 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 can be coded for that trigger many members of their household to have Alzheimer’s. It’s fascinating, even having a genetic danger that’s greater than regular, if you happen to throughout your life have had adhered to those fantastic way of life modifications of not smoking and exercising and retaining your weight down and consuming a beautiful food plan of inexperienced leafy greens and grains, you may decrease your danger of Alzheimer’s illness even when you’ve got the next genetic danger.

Dr. Heidi Syropoulou (39:41):

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

Peter Panageas (39:57):

Properly stated. Very, very properly stated. Look, I can’t thank the three of you adequate for in the present day. It’s such a related matter. Coming from a scientific perspective to clearly the transition from residence 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 friends … If there’s anyone or two or three issues that you just’d prefer to share with our viewers, what would it not be? Dr. Syropoulos, I’m going to begin 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 particular person isn’t essentially attempting to trouble you. That’s simply one of the crucial difficult issues with behavioral issues is the caregivers typically really feel as if they’re deliberately bothering them. It’s similar to in case you have chest ache, you’ve got coronary heart illness. You’ve gotten a behavioral downside when you’ve got Alzheimer’s. That’s primary.

Dr. Heidi Syropoulou (41:05):

Quantity two, caregivers, please be form 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 be taught. It’s important to be form to your self, and it’s a must to loop in as many members of the family that will help you as you may.

Dr. Heidi Syropoulou (41:22):

Three is to strive as exhausting as you may to search out the humor as a result of there can 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 every thing’s by-product from that. That’s actually an ideal reply. I received’t waste your time or the listeners’ time enhancing upon it. Simply return, hit rewind button, hearken to Dr. Heidi once more.

Peter Panageas (41:52):

Properly stated. Mike?

Mike Burnham (41:54):

Certain. I feel it’s been troublesome to see my dad who was such a powerful, good, stoic, caring particular person regress as a consequence 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 so that they want your love encouragement, help, time. I’d counsel if there’s anybody on the market that you realize is offering care to somebody with Alzheimer’s, attain out to them. They wish to know they’re not alone. They wish to know they’re being considered. In the event 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 staff Burnham, Michael, Karen, and the youngsters. 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, energy. To Jim and Tim Biggs and to Sue and Nancy and Maryann Biggs and all of the unimaginable work you probably did for taking good care of mother and pa, you guys had been all angels. Significantly the three ladies had been simply superb. To the hundreds of thousands of listeners who’re listening to this who’re going by way of the identical journey that the Burnhams are going by way of and that the Biggs household has gone by way of, you’re all doing God’s work. So with that, I can’t thank our friends sufficient. Dr. Syropoulos, Mike and Jim, you might be simply superb. Thanks a lot for being with us in the present day. 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 way of this journey, a few of the suggestions that you just obtained in the present day goes to be useful to every of you and your households. Take a look at the present notes for extra data 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 everyone right here, however we thought it was vital to offer everyone an replace previous to listening to half two that sadly Mr. Burnham has handed. Household are all doing properly. Providers had been performed this previous weekend, and Mr. Burnham is in a significantly better place in the present day. In order you hear and put together for half two of our podcast, I needed to ensure everyone had an replace on the standing of Mr. Burnham. On behalf of everyone 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.