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

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

Life on Planet Alz

Life on Planet Alz with Jack Cohen

00:00:00 – 00:05:05

(Intro)

How to describe memory, it’s like a landscape where snow has fallen. At first  the surface is white and pristine but as time goes by people trudge across the field and leave footprints, then a cart goes by leaving parallel tracks and then a car drives along the lane leaving tire marks. Then the scene gets busier, children on bikes on their way to school, women going shopping, and so on. Until the surface is crisscrossed with memories of what had happened. The analogy for Alzheimer’s disease is that all of the tracks get intertwined, and mixed up, and confusing, and then it all starts to melt.We live on planet Alz’s which is a different planet to Earth. You may think when you see us walking down the street that we look normal, but we are not. We are actually on a different planet, on our planet the normal rules do not apply, everything is unpredictable. Anything can happen at any moment. Those are the words of today’s guest Jack Cohen, the author Of Life on planet Alz’s. 

(Sponsor Plug) 

This episode is brought to you by family history film, visit myfamilyhistoryfilm.com  to find out how they can preserve your family memories in a fascinating documentary film.

(Jennifer)

 Welcome to Fading Memories, a supportive podcast for those caring for a loved one with memory loss. Welcome back. Thanks so much for joining me before, we jump in with my conversation with Jack be sure to check out our brand new revamped website. There are lots of articles, resources, and even recipes. More recipes coming soon, I’m still working on that page. I hope you enjoy, if you have any suggestions feel free to email me and now on with the show. 

With me on the podcast today all the way from Israel is Jack Cohen. He is the author of the book Life on Planet Alz’s, thanks for joining me Jack.

(Jack)

 It’s a pleasure to be here.

(Jennifer)

Well we’re going to talk about Jack and his wife and some definite caregiver tips but we’re also going to have a little bit on the difference between caring for a loved one in the United States versus Israel. So why don’t you start off by telling the story of you and your wife, wherever you would like to start is fine. 

(Jack)

 Okay. Well, we were both born in England in London. We grew up in London. I actually came from the east end of London, which is like the equivalent to the east side of New York which, was a very Jewish area when I was a child. And we met as teenagers ,basically,  and we got married pretty young. I went to Queen Mary College in University of London which was fairly close to where I lived and then I did a PhD in Cambridge, we went to Cambridgr and  we had a wonderful time in Cambridge. I did my PhD there in Chemistry with Nobel Prize winner who taught and it was a fantastic experience you know, real life-altering sort of experience. And then, after that I got a grant from the Science Research Council, a Fellowship from the Science Research Council of the UK and I chose to come to the Weizmann Institute in Israel . So when we had our first child she was like a month or two months old when we flew to Israel, It was our first flight. In 1964  and we spent two years in Israel, and that was also such an experience that we always wanted to come back so, at the time, it was sort of impossible to get any sort of physicians in Israel because it was like a  smaller country then. You know in the sixties, and so we left and I got a job as a host Doctoral Fellow out at Harvard Medical School. 

(Jennifer)

I think I’ve heard of that one. 

(Jack)

And then you know my wife was with me with at the time and we had a wonderful life. We had a second child,  he was born in London on route to the states he now lives in California and my daughter lives here and actually she’s living in the house with me and her husband and daughter here at the moment. Because their house is undergoing renovations just up the street. So then we came back to Israel and I went to the National Institutes of Health National Cancer Institute for twenty two years, and then I was a professor at Georgetown Medical School.

00:05:06 – 00:10:14

For five years I think it was.And then we decided since our children had grown up, left the nest and my wife didn’t like the weather in the winter in Washington. We decided to move and it was sort of a choice between California or Israel, and since my daughter had already had two children here so my wife wanted to be with grandchildren understandably, so we came here. And also we had a commitment you know we had lived here before and  we supported Israel strongly. So we came here and we fitted in and it was relatively easy having lived here for two years when we were younger. You know it was pretty easy to adapt and my wife spoke some Hebrew, I spoke some Hebrew so you know we fitted it. And we moved actually into a place called Natanya. It’s a very nice seaside resort just north of Tel Aviv, beautiful little town and we lived there and I worked at the Tele Chemin Hospital which is Sheba Medical Center, which is the largest hospital in Israel. It’s a government run hospital, and I was the chief scientist there. We had a very nice time and everything was hunky dory as you say until around, two thousand eleven or two thousand ten. Before that, my wife started showing indications of something being wrong,  she would forget things. She would do strange things and she would not remember things, and so on. And, it  came to a point where we were  referred to the psychogeriatric center at the hospital in Tel Aviv, which is very nice. They give you a free diagnosis, they do testing, they ask questions.They are very professional, and then they give you a diagnosis and diagnosed that  Niamey  had Alzheimer’s. And um,  so from then on, it was a question of sort of facing the fact and dealing with it. And you know, then many things happen. You know there were many incidents and things that I wrote about in my book, here is  my actual book. Life on Planet Alz’s, which is available by the way on Amazon.

 And it tells the story of how I dealt with it and the title actually comes from a discussion we had. So I joined a caregivers group and an English Speaking Club in  Israel – there’s an English speaking club all over the country called The Association Of Americans and Canadians in Israel. And in the Tanya, there’s a particularly big active club and they had a  of caregivers  group meeting once every two weeks. So I joined it and it was a very good environment for me, very good exchange. People felt very much that they could release their feelings,  sometimes they cried, sometimes they laughed but you know it was very good. And during those discussions I happen to say it seems like we’re on a different planet. We are living in like a different bubble, a different planet from everybody else and nobody really quite understands what we’re experiencing and we can’t really relate to other people because this is all consuming for us. Somehow I came to to write that book. 

(Jennifer)

Now as a scientist and a medical person, how did you react to the diagnosis? \

(Jack)

Well I’m not a medical person in the sense I am not an MD, I am a PhD. And so I’m a biomedical researcher and you know at first I reacted, I think a lot of people do,  before the actual diagnosis I reacted angrily because I thought my wife was doing things which were kind of stupid. Why would you keep buying toilet rolls? I mean I know in corona virus times that they’re scarce but she would come home with a big package of toilet rolls every time she went shopping until we had twelve of them on our balcony and I said don’t buy anymore. And sure enough the next time she went shopping she somehow had the the idea that we needed toilet rolls and even if she wrote a list. I said write a list,

00:10:15 – 00:15:05

So she wrote a list and then she would either forget the list or she would take it with her and forget to look at it or even if she looked at it  she would still buy toilet rolls.

(Jennifer)

 I’ve read recently why people are quote in quote hoarding toilet paper during this pandemic and a part of it is it’s like this feeling of needing to be clean and cared for and you know it’s it’s kind of a subconscious psychological need for cleanliness.And I’m wondering if with her mind not being the way it we think it should be, which is not really the better term. I’m wondering if there was like she knew something was wrong and that its manifestation of  showing that something was wrong. Because I  read that on your notes is like that’s funny because that’s what people are doing now. And I laugh because my friends buy toilet paper every time it’s on sale so they had plenty when this whole thing started. 

(Jack)

But it’s true that she was holding it but she didn’t remember that she was holding it. So she would each time buy another package. And it wasn’t just toilet paper. We had I remember finding eight open jars. What do you call jam, you know?

(Jennifer)

 Jam Or Jelly.

(Jack)

Jelly – in  America. 

(Jennifer) 

Yea jam has pieces of fruit in it and jelly is smooth.

(Jack)

Oh yes that’s the difference. We had eight open jars of jam in our refrigerator. 

(Jennifer) 

All the same flavor? 

(Jack) 

 No different different, but they were all you know sort of taking up space and I said don’t open anymore and she would keep bringing new ones and opening  new ones.So this is the kind of manifestations when I realized that she had some serious problem. And then the next thing was that she couldn’t cook, she lost the ability to remember how to cook. And so she would make a dinner, let’s say she would put something on a plate and put it in the microwave randomly dialing numbers, she didn’t remember. So,one day she put a meal in there for nearly twelve minutes and when it came out, it was like hard leather you know. And you know I got angry. Sometimes men get angry and I said, why are you doing this? You know it’s a waste of the food. I can’t eat this. The realization dawned that  I was the one who is being stupid because she couldn’t remember. I said, you know you should put it in for one minute or two minutes or even up to four minutes. But twelve minutes is gonna destroy it but she just couldn’t remember. 

(Jennifer)

Well it’s interesting ’cause like as my mom progressed, my Dad was a horrible cook. And I think he tried to allow her to make meals as long as possible because he was really bad at it. Steph. It got to the point where it was like , and this is not uncommon especially for seniors that are living alone or just pairs, and maybe they don’t have family close by but when you think about the number of steps just to make a sandwich. You gotta Ggt all the stuff out of the fridge and then he got to  assemble it amd cut it . It’s a lot of steps and I think cooking is one of the things that goes quickly because it’s not complicated, well you can do complicated stuff  but even basic recipes are multiples of steps and you have to time the steps.I mean although throwing something in the microwave is pretty easy. But as you learned, not so easy. 

(Jack)

It’s true, everything requires steps. She couldn’t do, like for example, if you think of putting on your clothes in the morning, you have to go through certain steps. You have a shower, you wipe yourself. She couldn’t remember which steps to do you know, she would forget to wipe herself, she would refuse to have a shower. She would put things on backwards or upside down or inside; really just completely randomly, and sometimes she would on five sets of underwear you know and two or  three completely random. And so I had to some years ago, a couple years after she was first diagnosed.

00:15:06 – 00:20:02

In the Israeli system what happens is you apply for a foreign caregiver because mostly Israelies don’t do that job. The foreigners and  usually Filipinos or Indians and the usual ones and so you have to be tested or  vetted by the Ministry of Health and they decide whether you  justify having one and then there’s a nurse from the municipality that  comes in and check you every few months and if they decide that you need help, then they will recommend you get it and then will give you number of hours. And so the hours that you can have somebody for is, then you can apply for somebody and they bring them usually either somebody who’s already in Israel or somebody they bring in. In our case, they brought in somebody and she was a Filipino, very very nice girl.And she lived with us; this was like a few years after she was diagnosed first. By the time it got really serious but  because my wife Naomi, she wouldn’t allow this caregiver to help her with intimate things like undressing and dressing and things like that. She would not let her so I had to do that. 

So it  defeated the purpose to some extent on the other hand, you know since I hated cooking and I couldn’t cook this girl did all the cooking and looked after us. She looked after my wife’s medication and all that kind of thing and eventually, after a year or two, they gave us the maximum number of hours, which is eighteen hours, which means basically twenty four seven. Where they can live in the house twenty four seven and they are required to be given like two hours every night off, at least and one one day a week off r, usually Saturday. So she lived with us for I think five years. And she helped us a tremendous amount but I had to bear the brunt of looking after my wife in detail like everyday things. My daughter used to come out once a week to spend a day with us so you know she would help and she would help her mother to remember her you know. And they used to go out and walk around and do shopping and theFilipina career whose name was Sally. She also would take my wife around to the stores and to shops and so on. So we kept her occupied and it worked pretty well for about five years we were in that situation and then it sort of got worse. And so then we decided,  I retired and we moved down here to Bej Chevron in the south from living in Italian north of Tel-aviv. We moved down here, it’s a two hours drive. It’s not that far and my daughter – The reason we moved down is because my daughter’s here with her husband, her husband works at the Goring University  hospital which is in Bej Cheva. So we came down here and we thought this would be a much better situation because my daughter could help me as well as the caregiver but after a few months, we realize it was getting worse and then after eight months we came to the tipping point. I came to the tipping point and luckily my daughter she could agree with me that we got to the point where we had to institutionalize my wife. We had to put her in a home and she is in a home with a  locked Alzheimer’s ward and at the moment because of the corona virus I cant visit her. I was visiting every everyday for like a year and a half until the corona virus started. But the nurses there are very nice and they do contact us on a smartphone. My wife, shes doesnt really understand it. You know sometimes she says hello but she doesn’t understand ; she can’t comprehend whether were there or not. You know I don’t think you fully understand what this phenomenon is.

00:20:03 – 00:25:01

So that is the situation.

(Jennifer)

 So the tipping point was because she was getting combative right?

(Jack)

Yes, very aggressive.

(Jennifer)

 Yeah, my mom got the same way and I think with the smartphones ’cause  my mom always loved dogs. That was one of her stories, I’ve had dogs all my life blah blah blah.  I would try to show her cute pictures or little videos of my dogs on my phone and it didn’t register and so I’ve been suggesting to the care homes that  I deal with my mom’s and others. That they use smart TV’s so that when you know your wife for my mom is looking at us we’re more like lifesize ’cause my mom’s visual processing was shot. 

(Jack)

That’s very good point. I think that’s a good idea.I think that’s a very good idea. 

(Jennifer)

Even a larger i-Pad would help. 

(Jack)

Because they don’t  register that your a  person there. Anyway, so what happened was that she got very aggressive and there were times when of course, when we were in the Tanya, there were a few times that she got lost. And we didn’t know where she was and we were frantically running around and calling the police and so on. One time, I don’t know how she got there, but she got to school and outside there was a group of girls who were ready to go home.And so they realized she was completely lost so they took her in a cab taxi to our house.Luckily she had a wrist name tag. And another time she walked in the wrong direction and she was like a mile down the road in the wrong direction and I stayed home and called the police said stay home but the carer went out looking for her. And she found her eventually. So you know things happen, but also before that she had this thing that a lot of people do. She would say I want to go home and we would say you’re home already. No this is not my home, it looks like my home but its not my home.And she would go to the door and bang  on the door and kick the door. And it was so difficult and so we took to just taking her out for a walk. Walking around the block coming back and she would accept it.

(Jennifer)

 Yeah I never had to deal with that with my mom thankfully, and she lived in her home for two months shy of forty seven years. So I was terrified that she would wanna go home. Which is very common because when we moved her to the memory care she ,it was so funny, the day before she said, I was telling her it was just temporary which is sort of true.I said because there’s some things that need to be fixed up in your house, and so we’re going to do.They had a it looked like the roof had leaked and there was a big stain on the ceiling and I said see. And it was large, I’m pretty sure she could make it out at that point. And so I kept telling her it’s just it’s just temporary, we’re not  selling your house. No, we’re not going to sell your house and the day before we moved her in, she looked at me with complete clarity on her face and you’re not renting it out either and I was like, ooh. So I was very concerned that she would not acclimate to the new living environment, which it did take about six to eight weeks, which was rough. But one of the things I’ve learned is when people are at home and they’re saying I wanna go home, I wanna go home, they very well may be looking for a feeling of safety and comfort. And the thing you would probably get when you go home like we’ve been traveling maybe a week or two weeks and it’s like I can’t wait to get home and have my own couch and my own bed even though you’re loving where you’re traveling, there’s still that feeling.

(Jack)

 I’m pretty sure she was talking about her home when she was a child. 

(Jennifer)

That’s pretty common too.

(Jack)

 I think she was thinking of her home and her original home and one of the funny things was when we moved here, we were in an apartment in theTanya here. We’re in a one level sort of bungalow or I’m not sure, it’s joined along the street, it is connected.A whole series of them.

00:25:02 – 00:30:00

And there’s no upstairs here and she would go around looking for the stairs and she’ll go around  literally banging on the wall to see where are the stairs. And it was so weird and you know unfortunately, then the tipping point for me was one day. She had a shower and I was trying to get her to get dressed and to get dry and to get ready. And she got very angry with me and she picked up the wet diaper that she’d been using, the pull up diaper that she’d been using, which was wet from you what and she around the face with it. And she ran screaming into the living room, naked, shouting call the police! Call the police! At this point I cant take this, I cant deal with this anymore.  I cannot control her,  I cannot help her. You know there’s nothing I can do you know she’s just out of control. And somy daughter and I discussed it nd luckily we found this very nice place  which is only five minutes drive from here. And we were very fortunate. We found it  and they took her in there and she’s been after two years now.

(Jennifer)

 And do they do activities where she’s at ?

(Jack)

Oh, yes! They have a person in charge of activities and every morning they do some sort of physical activity. They sit them all in a big circle and they kick a big yellow ball around you know and then they have some people of the people sp drawings.They draw on the pages where you fill it in. 

(Jennifer)

Coloring? 

Ah yes coloring. My wife isnt able to do that but my daughter made a worry blanket for her. Which she likes to play with and feel. And then she has books in English which we take to her, that are basically children’s nursery rhymes and she looks at the nursery rhymes and she likes animals and she looks at the animals you know. I brought her a book or somebody brought her a book of photographs of animals, and you know you turn the page and there are lions and there are seals. All baby animals, and every morning I would give that to her and she would look at it and she would go through it and I’m not sure how much she really understood, but she seemed to like it. 

(Jennifer)

There’s some books you might wanna check out, they are available on Amazon.They’re called Two Lap books. They are designed for people with cognitive impairment. They’re not a story; theyre about fourteen by eleven inches and I’m a photographer so my measurements are photographs. And each page is very brightly illustrated with…

(Jack)

Sounds very good. 

(Jennifer)

Yeah there great,  there’s three of them. I have two and my mom actually really enjoyed them and when I brought them to her, you know in her residence she had a friend who always carted around a paperback and I never knew for sure if this other Diane, my mom’s name was Diane.And she befriended another woman named Diane which was super confusing for my mother and then for while there were three Diane’s so had Diane, other Diane and other other Diane.I would say, Oh where’s your friend Diane? And since my mom would say I’m Diane. I’m like I know the other one. It was confusing. So she actually could still process language by reading and in the beginning of the book it talks about how to use the book and so she’s reading the book.  She’s reading the how to read, its so funny. I’ll email you the link to them…

(Jack)

I appreciate it because my son is always asking me what shall I bring or what shall I send you know. So that would be ideal because he’s happy to get those books and send them tome,  I would very much like that. 

(Jennifer)

Yeah they’re – I love them. I would show them to you but they’re downstairs somewhere. 

(Jack)

Oh no worries.  It’s difficult to find the right kind of book because if it’s got too much writing in it, she can read English still but she sort of peters out. She loses sort of interest because she doesn’t understand, she can’t get the meaning of the whole thing together.

00:30:00 – 00:35:04

So she loses interest but as long as it’s got some writing and lots of  pictures she’s happy. 

(Jennifer)

I think it’s basic sentences, like there’s an older woman sitting in a chair in the sunshine and I think the one, I  think there’s only one sentence or maybe two maximum per page. And they’ll say something like I love to sit in the sun with the sunshine on my face or something. It’s really basic but because it’s brightly colored and there’s a lot of contrast in the colors it’s easy for them to process visually. And you know there’s pictures of like little kids holding grandma’s hands. So it’s like my mom,  I don’t know why I never thought of baby animal books, well I’m still learning things even though I can’t do them with her. But she was very resistant to anything that was childlike. So I’m not sure children’s books would have been helpful. Although that’s a good thing to try. My mom liked to be a helper which was frustrating because I’d spent months trying to figure out how to allow the residents she was in to let her quote in quote help so that she was less combative but not make more work for them. But I never did find that solution before Mom passed away. 

(Jack)

But, one of the main things I did for my wife while she’s in the home is music. We brought her earphones with like five hundred songs on them on a small disc. And whenever I went there I would put these on her before I left and turn on the music and first she would say take those off, then once  she heard the music then she would start seeing along. She used to sing in a choir,  she had a very nice soprano voice and used it for years. She sang in a choir in our area in Washington and Maryland. So she would sing along with this music and so everybody’s doing their own thing coloring and so on and  she’s singing  along. You know, completely oblivious of what’s going on around and she directs. So she’s singing along and doing this, it’s quite funny in a way, but you know it keeps her occupied and she enjoys it. 

(Jennifer)

My mom was always into talk radio. I think if she was one still alive and had her wits about her I think, she’d actually really enjoy podcasts and I did play her mine occasionally but I never used headphones, which is definitely better because it kinda puts it right into your brain. Theres less distractions. If your loved one doesn’t respond to music like my mom, my dad would listen to music at home, but mom would have a daytime TV talk show on in the back of the house and on each end of the house essentially. So as she went about her chores, she would hear the talking and then she also listened like she was sitting in a room doing something sewing or working on some of my dad’s business she would listen to talk radio. So I know she would like podcasts but I never could figure out how to play podcasts for her that. I should have played mine as I was leaving those that would have been a really good suggestion.

(Jack)

 The problem is if it’s something that you have to follow over a period of time then my wife just loses the meaning of it. She loses the connection and then it sort of becomes gibberish. 

(Jennifer)

I’m just wondering if the hearing my voice would have been soothing,

(Jack)

 That might be true, that would be true. 

(Jennifer)

Something for somebody else to try. 

(Jack)

 One of the problems is my wife recognizes me and my daughter and my son because we were in constant contact with her but she doesn’t really know who we are. You know she doesn’t connect her children as they are adults to the children she had. And she would ask me, Jack, where are  the children? And I would say they had grown up and they live somewhere else by themselves now. She really didn’t quite comprehend and then on several occasions she asked me strange things. She asked me how many children do I have? She didn’t remember and she  said to me one day when I was visiting her ,she said we should get married. ]

(Jennifer)

Well at least  picked you a second time.My mom always thought I was her best friend and I was kind of lucky because over the course of about three years, I lost one hundred pounds.

00:35:04 – 00:40:02

So I was fairly certain that she did not recognize me because I was overweight for twenty-ish years and that was during the beginning and the middle of her disease. So as she got into the later stages, the person that I am was not the person that she remembered. And so I was always her best friend. She would  tell everybody I’ve known her for areally long time and I would laugh and say, Oh yeah, you think like fifty three years.  So she knew and she trusted me. So this whole not being able to visit is really difficult for everybody. I only had to deal with it for two weeks and I was beginning to get to the point where I was about to just say you know I have been locked in my house. I have not seen anybody or gone anything. I am coming over there because I was concerned my mom would forget who I was completely and then not trust me and then we’d have even more issues but mom fixed that for all of us. And then there was something else that I was gonna say, Oh yes. 

Right before Thanksgiving twenty nineteen, I was taking her to my house to pick up her winter clothes and I know people laugh because we’re in California so you really don’t need those right. And I had separated her closet even though it was small and she didn’t have a ton of clothes. I separated her clothing into like warmer weather and cooler weather so that there was less choices because in two thousand eighteen every Monday when I’d go and visit she had the same sweater on. And I finally got to the point where I asked the staff is she giving you a hard time about changing clothes? And then they one day they said oh yeah showering too and I’m like that explains some other things. So I took like half of her clothes out and they had a lot less issues with that but we were driving to my house and I’m asking her what would you like to do for Thanksgiving. A nd she kept saying, well, you know whatever Chuck wants to ,my husband wants to. No what do you want to do? And I finally said, do you want to spend time with your daughters? I dont have daughters. Okay thanks alot. Fortunately I was used to her remembering her brothers; she’s the oldest of four. And so it’s her, the two brothers, and her sister, and unfortunately she didn’t remember her sister either. I don’t know why she always remembers the guys but it was just funny that she eventually lost the I had sons not daughters that was weird. It was a really weird conversation. 

(Jack)

Things do sometimes get very weird.

(Jennifer)

 Yeah they get all mixed up and closer to the end and this is the one thing that I’ve realized since mom passed away is that even though she was in a care home and I would go once a week. And then spend the rest of the week trying to figure out how to solve some of the challenges she kept presenting all of us. When you’re in the midst of taking care of somebody, it’s like you cannot see the forest for the tree you’re just so focused on them that it’s very hard to see the rest of reality. Because my husband kept saying, because I kept saying I think mom’s got two or three more years. Now, this was the very beginning of twenty twenty. My mom passed away on March thirty first. So I kept saying I think mom’s got two or three more years which she might have if she hadn’t broken her leg, but my husband keeps saying Idon’t think so. She seems really worse than I think you’re acknowledging and I think that’s one of the challenges it’s like you really don’t have a clue how bad it really is until you can take a giant step back. And that’s coming from me who she was in like I said, she was in a care home. So it’s really really hard because she started hallucinating and I suspected that and  that was like in February. 

(Jack)

I always said that you know putting somebody in home is the final step, I would never do that unless I was absolutely forced to. But then and, as I said in my little write up that I did here, that you have to learn to accept when the tipping point comes. You have to be open to the  probability that at some point, you are not gonna be able to deal with this yourself and you need professional people to do it. And you know let’s face it in the home she has nurses, attendance available, there’s a  doctor on site. Not all the time but most of the time you know and and nurses are very very sympathetic you know they are very friendly to the patient. So you know I think that’s very good. She seems to have lost most of her aggressiveness now, she still is aggressive at times she’ll refuse to do things and so on.

00:40:03 – 00:45:03

You know I think she’s much better off there than she was here.

(Jennifer)

 It’s interesting ’cause you’re saying how the nurses are so patient and stuff and my mom drew blood on people.She would scratch and draw blood. 

(Jack)

In the place where my wife is they cut their nails regularly and do their hair. They keep it ver y short. 

(Jennifer)

That’s one thing that’s really different is because of the potential for cutting the nails and maybe cutting the skin and getting an infection, they don’t do that. Now they did trim my mom’s nails once but I don’t think that technically that was allowed and I carried nail clippers in my purse because I swear you’d think I just did that and they’d be you know half an inch long. And then because she was also attached to an assisted living community, there was a salon gal there and she was great. She would go to the memory care, pick the gals up, go and do their hair and all that great stuff. Well it got to the point where my mom’s like I’m not going with you or the last time she went without me the gal texted me and said, Mom’s not willing to go and we’d already gone through mom didn’t go the day before. But, we foolishly made the appointment at lunchtime.

 So I thought it was after lunch. There was no flexibility on the timing. So when lunch was a little late it  screwed everything up.  So the next day she went down to get mom and mom didn’t wanna go and then she convinced mom to go and then mom said, no you’re not gonna do anything to my hair. There was a series of text messages back and forth and it was so frustrating. She finally got everything handled; hair trimmed and washed and cut and everything .And after that I was like I can’t have this nonsense. This woman basically had two appointments for you and got paid for one. This is not this is not okay. The other thing that I don’t understand and I don’t know if it’s just California or The United States in general but I don’t know why these communities don’t have doctors on staff or on call because man taking my mom to the doctor was the worst headache. For the last year the doctor was a pain in the rump, she was a pain in the rump. I was like I don’t need this. 

(Jack)

We had a serious problem with my wife’s teeth. She needed a minor operation on her teeth. And we took her and she  absolutely refused to let him look and so on. So he recommended that there’s the ear, nose, and throat at the local big hospital. They do operations on unwell patients and so on and they actually sedate people who aren’t cooperative. We were  recommended to that so we took her. The first time we took her that she refused to cooperate and they said, don’t worry bring her back like in a week’s time, and we made another appointment, and then this time they were ready for her you know, they will prepare. So they did the operation and she was okay, it was only local anesthetic so she didn’t feel anything and they somehow persuaded her to let them do it. So it was lucky that this was done just before she went into the home, but we had to go through this whole rigmarole all too to have this done. I can’t remember the exact details were but it was really quite an exercise. 

(Jennifer)

The process was worse than what needed to be done.

(Jack)

 So you know you asked me at the beginning about differences between the states and in Israel. Well it might help to know that Israel for many many many years was run by a Labour government. Basically Socialist government so they have very strong laws of protecting workers and so on and so that has helped a lot but fortunately, Israel opened up became more of a capitalist society. So now it’s more capitalist than that but still things hangover, now a few years ago the Israeli government decided that it would be better for people to stay at home and than to be institutionalized. That enables people as I mentioned earlier to get caregivers in their homs  to look after them. And that costs a certain amount of money. And the government in order to make the system work subsidizes a portion of the cost. So in my case and I think this is usually when you have full-time career.

00:45:04 – 00:50:04

Twenty four seven, they paid forty percent of the cost, the government. Now when she went into the home of course,  we didn’t need the care anymore but the home, all residential homes and and nursing homes, and so on are all  controlled by the Ministry of Health. So there’s a maximum price they can charge, which at the moment is fifteen thousand shekels, which comes to I believe four thousand two hundred dollars a month. That’s the maximum charge. 

(Jennifer)

That’s about the baseline for us. 

(Jack)

So of course, the states is a much more – People earn much more salaries by a  factor of two or three on average for a given job. But also the costs are less. So it sort of works out in the end because if people earn less they pay less but it’s proportion is almost the same but it’s definitely more expensive. I know coming from England I also know that in England, it’s much more expensive. So  four thousand two hundred a month in England might cost ten thousand a month and in states might cost twenty thousand a month or something like that. You know crazy prices. 

(Jennifer)

Mom passed away on March thirty first ,starting April first her rent in care fees would have been a little bit over seven thousand she was at between fifty six and fifty seven hundred. And then because she was evaluated every March, so March twenty nineteen, she was evaluated. Things were still fairly simple and easy, and then May, June all the way till her passing she just kept getting more difficult and more combative, and then she fell and broke her leg when we brought her back to the residents on March twelfth. I told the director, the memory care director, I know we need to do mom’s evaluations and she goes I have the paperwork right here and I’m like Oh shocker. And so we just filled it out and they was quite generous on if there was kind of a question on does mom needs a little bit more help or  a little bit less help she’d of err on the side of a little bit less because it kept the price down a little bit. But she jumped significantly just because there had been such a change in the ten months. So that’s unfortunately cost prohibitive for a lot of people. My dad had investments and they had their social security. And then we rented out her home and until…

(Jack)

 I should mention that here if the Ministry of Health , if your spouse or  a member of the family goes into a home, you can apply for a subsidy. So although they limit the price, you can also apply for a subsidy for that price. I applied but I was turned down because I have earned enough money and I own this house and  I own an apartment. So they said, no, you don’t qualify but that’s fine I didn’t quarrel with that because the amount is not too much. And by the way for that amount, this includes drugs or medication is included. Because  the doctor is on site and she takes care of all the medication. So I’m no longer liable. I don’t have to have any responsibility for getting medication, giving it her or anything like that. It’s all taken care of and if the doctor there decides that she needs to see specialists, they arrange it, they get a van, they take it to the specialist and the specialist sees you. I don’t have to deal with any of that. Now, that’s another very positive aspect of the situation.

(Jennifer)

We need to shift our residential care home communities to that. I didn’t have to worry about mom’s medication because it was ordered and shipped online. So whenever they needed more of whatever they would just put an order in through this one company and then it was delivered to mom’s residents. So there was no middleman, I was not the middleman on that so that certainly helped. I mean I did pay the bill, but it was also a direct withdrawal from moms bank accounts. So I didn’t have to worry about that either. The government was not involved in that at all.

00:50:05 – 00:55:02

But the whole doctor part because they would call me and say, well, we think mom’s got a utI and I learned real fast that was not what was going on with my mom ’cause I went through four or five appointments with you know to get in a urine sample, which was not easy. And dragging going from my house to pick her up, back to the doctor, which was literally three quarters of a mile away from my house. So it was like back and forth back and forth and she would get agitated and I don’t know if it was because I was concerned about picking her up and getting her there on time. I tried to make sure that there was a lot of flexibility because I knew if I was tense, she would get tense and then it would just go all wrong. I’ve never really did figure out why she was okay with the dentist except for once but maybe she didn’t like the new doctor I don’t know. 

But doctor visits were a nightmare and I spent like a significant amount of February trying to find an in home concierge doctors service. Which they have here in the states. That would come in and take care of her unfortunately those companies functioned in the big cities not out here in the suburbs where we’re at. Which doesn’t make a lot of sense to me because I mean, it does and it doesn’t. The one company that I contacted, ah these guys sound great and they were like, well, you know check back with us in a few months and see if we’re servicing your area and I’m like it’s we’re about fifty miles northeast of San Francisco. So it’s like okay well, if you’re servicing San Francisco and Oakland, it’s gonna  take months and months and months to creep out that fifty miles to get out to here. You know because then the next biggest town over is Stockton and that’s not the biggest town. So you know it’s like we’re way out here in the boonies. So I’m like, yeah, it’s not gonna happen for mom because I figured she would be gone before that happened, little did I know. But yeah, it’s just not having a doctor in the community was a nightmare.

(Jack)

 It seems to me that my wife is much better cared for in this home because she has a doctor on site, she has nurses there, anything happens you know they’re there if there’s a need for doctors, or she needs to be to be taken to the hospital, the emergency room or anything that they will take care of it. So you know and so luckily I don’t have to deal with that. So I found myself with a lot more time. So I applied to the local university and I became a visiting professor of chemistry at the local Bangor University so Bangor keeps me occupied. I do things and it’s good. 

(Jennifer)

It’s important to keep our brains active and learning and doing or else. 

(Jack)

Although I don’t think necessarily doing that will stop you getting Alzheimer’s, but it certainly helps you to keep active by being involved in using your brain and doing things. I think that’s very important. 

(Jennifer)

Has it slowed down a year or two just think you know. Yeah I mean you know especially now my mom had younger onset Alzheimer’s so it still would’ve benefited us because maybe my niece and nephew would have gotten more. My daughter got all good years with my mom, my niece and my nephew – my nephew adopted so by the time they adopted him she was already in the later mid stages and might I do recall my sister basically telling my telling me , she had to tell my niece why her grandmother kept asking the same question over and over again when my niece was like six.Which would have made my daughter twenty. So my daughter, really benefited – my sister and I only four and a half years apart. So the fact that the kids are so far apart is kind of interesting. 

(Jack)

I should mention that my daughter Myrum, whose  surname is Green, Myrum Green. She has a blog which she writes about her mother about my my wife. Its called The Lost  Kitchen. 

(Jennifer)

I like that title. 

(Jack)

It comes from something that a doctor told me once he said, if you go into the kitchen and you don’t remember what you went in there for that’s not Alzheimer’s if you go into the kitchen and you can’t remember what a kitchen is that’s Alzheimer’s.

00:55:02 – 00:59:42

So that’s why she could it The Lost Kitchen. 

(Jennifer)

I always heard the same  analogy but with car keys; if you can’t remember where you put the car keys that’s just forgetfulness but if you  forget what they’re for that’s a problem.

(Jack)

 That’s right. 

(Jennifer)

So, do you have any last tidbit of advice before I let you go?  Because I know it’s getting really late in Israel,  it’s not even lunchtime here in California.

(Jack)

It’s nine o’clock and it is not so bad. 

(Jennifer)

Okay, I went the wrong direction on the timing. 

(Jack)

Yes it’s later than earlier, right? 

(Jennifer)

I was thinking well, I didn’t I added twelve hours, not ten. 

(Jack)

So I don’t really know what to say except that you have to accept the situation. Accepting the situation is the hardest thing, especially the beginning. Once you accept the situation that you’re in the situation that you know there’s no point in complaining that you know I didn’t sign up for this and you know this is not my wife anymore my husband you know. This is you have a responsibility and you’d have to look after this person do whatever you can when it comes to it, you have to be also prepared to break the connection. And sometimes, one thing I would mention is that most of the people involved in discussing caregivers and the situation of people with Alzheimer’s are women. But actually the people who get Altimiezers are more women than men. So it turns out that men are more the caregivers in a sense. But we have very little voice in terms of the general discussion of the situation because men let’s face it tend not to be so forward  in discussing the private things. So because I like to write, so I did this but I think it’s more of an exception because most of the books that, for example, authors have listed most of them are by women.

(Jennifer)

 That is true.

(Jack)

 So anyway, the thing is that as a man it was very difficult for me to adjust. As it were to having a wife being single again. It’s a complicated situation but I think overall you know we’ve dealt with it. Many people unfortunately have tragedies in their lives and we’ve tried to deal with them. Hopefully We’ve dealt with it as best we can. 

(Jennifer)

Well that sounds terrific. I appreciate the stories and the advice. And I will look up Miriam’s blog because that sounds terrific. She’s also written a book by the way which was published by a publisher in Oregon as far as I remember. And it’s also called The Lost Kitchen. Just an anecdote, her book and her blog came out of discussions that I had with her because when my wife got Alzheimer’s and I couldn’t cook, and so I was quoting my daughter all the time. What will I do? How do I do that? And out of that came her book, it has recipes in it as well. So it produced something useful in the end. 

(Jennifer) 

There’s a lot of us caregivers that seem to turn to  we creating something. @e write a book, we create an app, or a podcast. I think that’s really what I find very interesting about this community is how many of us create something. 

(Jack) 

It’s like a response. A personal, unnecessary response to the situation. Very nice talking to you. 

(Outro) 

One Alzheimer’s diagnosis and three creative responses, not really surprised. That’s just part of the caregiving community. If you’d like more from my personal care giving community check out our website, sign up for our email newsletter where you’ll get quick tips, funny memes, cute dog photos, and more. And as always, I’ll be in your ears again next Tuesday.