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

Surviving As A Well Spouse

Surviving Alzheimers As a Well Spouse

00:00:01 – 00:05:01

(Intro)

When you are experiencing sorrow, fear, frustration, agony, exhaustion, and depression;  and when the level of caregiving stress makes you feel on the verge of a total breakdown know that you are not alone. There is not the way, there is not a single right way, and there is definitely not an easy way, but there are passed through this arduous terrain. My guest today is here to help you find your path,  we discussed how love endures through the funding tasks and drudgery of caregiving. What triumph means when fighting a war with a disease that has no cure and how we can all find our way on the difficult journey of carrying for loved ones with Alzheimer’s.

(Sponder 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. I am honored today to have Joann Wingfield, she is the author of the brand new book Wealth Spouse and it comes out today. So thanks for joining me Joanne. 

(Joanne)

Thank you for having me.

(Jennifer)

 So, you have joined the ranks of authors writing about Alzheimer’s, can you first tell me about your husband, Clyde? Since he’s obviously the inspiration for the book.

(Joanne) 

 Well, where should I start? We met shortly after I came to this country. I’m originally from China and you know he was a professor in the university where I was a graduate student. We didn’t have a student-teacher relationship, that is a no no. But we met through a common friend and for many years he was like my coach. He taught me so much you know as a new graduate student and a foreigner in this country everything is new and there is so much learning to do. So eventually the relationship evolved just like many relationships. He was a Korean War veteran and you know and you know have been quite established in higher education. So you know I felt like I can learn so much from him. And once the relationship became personal, he also took very good care of me. So I often times think of that like an investment. It becomes the capital in the relationship and in hard times I can dig into it. 

(Jennifer)

 So he was diagnosed with Alzheimer’s in two thousand and two. 

(Joanne)

He was diagnosed in two thousand and two, although there were some signs long before that but we didn’t know for sure. And yes, eventually he was diagnosed in two thousand and two. 

(Jennifer)

What kind of early signs did he have? I talk about my mom’s a lot but I should ask that question to guests more often. 

(Joanne) 

So he is a verry organized person, very neat. And then suddenly I found on occasions, the bathroom drawers are open and the lights are on, even during the day. And once in a while the water, the bathroom water was left running. Those didn’t happen every day, but it’s such a departure from his normal behavior so it’s kind of alarming. And then I remember I joked with him but other than that his function was still good. And carries good conversation and no problem driving. So I teased him that he must have Alzheimer’s, but it was a joke!

00:05:02 – 00:10:03

And then I got to the point, you know so many people around me, like friends, parents and the relatives.They said why don’t you talk to your doctor? So we can exclude it so he went to talk to his doctor and he gave him what’s called the mini mental scale. And his doctor told him you have some age related memory loss, but it’s still within the scale as normal. But now we know as it’s actually early signs.

(Jennifer)

 Wonder if they still think that way now we’re talking you know eighteen or nineteen years later. Because I’ve talked to people whose spouses are highly educated, very, very intelligent and they’re able to hide the – They have more coping techniques for their memory not working the way used to, and so it takes longer to get diagnosed and they basically have to run out of coping tools. 

(Joanne) 

Yes.

(Jennifer)

 I’m wondering if they do it, i dont know…  the medical professions can hardly do anything. 

(Joanne)

 So now, I don’t know but I think once you reach sixty five or something your family doctor automatically gives you a mental test, a cognitive test automatically.  

(Jennifer)

I believe that is correct, the  Alzheimer’s Association has been working on that. I’m a legislative advocate volunteer and that sounds like it’s either a law that’s I think that has been passed as the Hope Act or the Improve Hope Act. tThere was a second one after the Hope Act, I get all confused with all these acronyms. But yeah, I know it’s important to test it early. That way you can make lifestyle adjustments if you need to, you can plan all these good things. So how did he pass away? 

(Joanne)

He passed away in twenty eleven, so it’s been nine years.

(Jennifer)

 Seems like somewhere around a decade is about normal? 

(Joanne) 

Yeah, I don’t know now because research keeps changing, you know the date to our knowledge but at the time of his diagnosis I was told people could die from two years to twenty years. But eight year from diagnosis to death, eight years is the average. That doesn’t mean the progression of the disease because we can only stop from the diagnosis and as you said, the more intelligent they are usually means they are diagnosed later.

(Jennifer)

 My mom was diagnosed laterand let’s see, she was diagnosed in September of twenty eleven and passed away in March twenty twenty. So that’s like eight and a half years. 

(Joanne)

Now, Reaganhad  ten years from his diagnosis. 

(Jennifer)

I just know her diagnosis came so late, she was already in the middle stages when they finally got a diagnosis for her and some of it was her resistance. I think she knew it was going on and she didn’t wanna know officially, which is pretty common. I deal with that question because their coming up with the blood tests that are supposed to – I don’t know if it tests that you have it or you’re at risk for having it, now I’ve forgotten. But it’s like, I have a family history I don’t know if I wanna know or not. I should and I probably would talk myself into it but knowing how ugly this disease is I don’t I don’t really wanna know. Go ahead. 

(Joanne) 

The doctors don’t recommend that, the blood test , the DNA test, will decide that you are at high risk they cannot be hundred percent. But doctors dont recommend it because if you know what you’re going to do other than make you miserable and make the people around you miserable.There’s no cure. So what you going to do?

(Jennifer)

 Well hopefully you start checking off a lot of your bucket list and you make decisions while you still have the time to make the decisions like end of life choices. Everybody always says they wanna live in their own home until the end and that’s not always safe or practical.

00:10:03 – 00:15:08

And those are the conversations like we never had. My Dad passed away and his friends said well your Dad thinks your mom will come live with you and it was like, Oh, I, don’t think so. My daughter just moved out last month. I was fifty when he died. So I wasn’t ready to be tied down with my mom. Especially because I figured it’d be at least ten years , if i would have know it would have been three I might have done something different. Hindsight is always twenty twenty. One of the reasons I chose a memory care residents was so that she would have the stimulation of other residents and that worked out really great. She had she had quite a few friends, I would take her and another lady out occasionally to the park to watch the kids. Everybody always thought I was insane for doing that but they kept each other company, they talked to each other and they didn’t get irritated when they kept repeating themselves though it made it a little bit easier for me by taking two of them even though it sounds crazy. So tell me about ,besides your husband, tell me about the inspiration for your book.

(Joanne)

 Okay, so during my time as a spouse taking care of my husband there are such hard,hard moments. There are moments I found like, how am I going to get through this? I’m thinking okay, I’m going to write a book so other people will know, it’s sort of like a constellation to myself right. And then there are so many hilarious moments, I said other people’s not going to see this. They have to know this because regardless of how hard life is there are light hearted moments.  So I always wanted to write a book. And so you know eventually, I retired and I think part  of it is my own therapy to reveal this journey. I remember so many times thinking what is coming, what was coming I wish I knew what was coming I don’t know what was coming.The unknown gave me so much anxiety and now I’m thinking now I know and I said maybe other people have the same feeling I had. They wanted to know you even if it’s just one person’s story it still can be inspiring. 

(Jennifer)

I agree. There was times after my mom passed away, I sent a video that I had taken of mom about a month before she passed away. No, a little more than a month. And she was telling me how her brothers were normal people now. And I thought that was quite interesting because as far as I know, my uncles have always been normal. And it was just really cute and she yeah, she was talking about how they were normal people and then she started talking about somebody else I had no idea what she was talking about. So when you could find that and when you can see that she was talking oh, my brothers,are normal people. And instead of , and I learned the hard way, instead of trying to figure out what she meant by that I would just laugh and go oh, they’re normal people.Oh thats so good to hear! I’m so glad theyre normal now. And I would get a laugh and that would just always helped the situation tremendously if I could stay relaxed. So how there’s some questions that you attempt to answer in the book and one of them is, how does love endure through the mundane tasks and drudgery of caregiving that can last years or even a decade or more? That applies even to adult children of people living with Alzheimer’s or dementia because they were times my mom was not terribly lovable. 

(Joanne)

No of course yeah. You know what you said is right.There are moments, it’s like our children, there  are moments they are not very lovable. But regardless, you still love them right so that has some similarity, but it’s also very different in taking care of children. You have the hope one day they will grow up and they will be independent and maybe they will even take care of you but with an Altimiezers spouse it’s a one way channel.

00:15:08 – 00:20:04

That there is very little that comes out. And, the for me the hardest part is that he was such an intelligent man, we both worked for a university. So you know intellectual communication is important to us. And you know I know I was going to use that and eventually he didn’t know me. We always said love is a two way channel, right? You have to nurture the relationship otherwise the relationship will die.  So in this situation you know you nurture your husband but there’s nothing to nurture back. So the love is the hardest to endure. So that was a bigger question I had and I thought as I was going through that, as you said, there is a moment I was ugly. In my book, there is a chapter that takes about this ugliness.And to quote lincoln, sometimes we let the bad things get the better of us and we lose our good temper and your good heartedness. 

But I have to put things into perspective, that is temporary and that is okay in the long run in order to restore your sanity, you need an outlet. And as long as you have that perspective that we all have our limits and at one point that limit is I just scream. I just burst into howling, crying because it was so hard and afterwards you know I restore my sanity. I know that storm  is over and I will not abandon him. It’s about I wanted to keep and I have the strength to keep. So you have to lift yourself a little higher, look a little further to see this space and this will end. And how does love endure for me?We were  chatting about relationships. I feel like we had such a good relationship.When I was a graduate student and I was so clueless about this country and he taught me so much.

 I got my first job and then I was promoted to become a university administrator and he has so much experience. He was my coach on the side literally. And I felt like I owe all my success, my career success to him. Plus in my personal life. At first I was a single mother, he took care me. You know it’s not that he took care of me financially I had always had my job but he let me know if I had trouble or if I was in dire need he would take care of me but knowing that gave me strength. Gave me a sense of security.At one time my son when he was a teenager he was very rebellious.Every time we had a big problem, in my heart it would just tear me apart  because you are hurting for this kid. He would always say to me, honey regardless of what happened we will get through this together. So he invested so much in the relationship. I felt you know in the hard times, I would think of the good times together which would again give me perspective.For me, I asked myself many times during my well spouse years,if knowing this was the end, that  I would end up like this. Would I have married him? And my answer has never wavered. It’s always yes. For the good years for thirty year we were together. 

00:20:04 – 00:25:00

I would say, yes I’d rather take this because I knew what is love. And also I knew he made me a strong woman. So much of my growth is with him and he nurtured me. I felt like I owed so much success to him, its not that I just genuinely loved him. Its that he made me a better person. So that’s another part of how love can endure.

Then there is another big transformation moment. That is when you know in the facility, he had a girlfriend. Oh it was cute but it was also very hurting.Because a love relationship is very exclusive you don’t mac on the opposite side sex coming in right, it’s a two horse world that you don’t let other people in. But now, I didn’t have to but I thought about it. You know how this relationship change then I rationalized things again. One being their relationship is very innocent. They don’t even know each other’s name. It’s a very innocent relationship. So I don’t consider this as a betrayal of our love.And if I really loved him, if I truly loved him then I wouldnt deprive him of that relationship. And then that woman is like a baby, she doesn’t know anybody. I also have compassion for her,  she was sick and then she was like an innocent baby. So this is a transformation for me, i felt my love grow into a more mature love. And a bigger love, it’s a love for humanity. It’s not an exclusive love, I can still love my husband and I can love this little girlfriend he had. And in that way, my love transformed. That doesn’t mean that I don’t want him all for myself. You know you have to go through a period of time of adjustment. Doesn’t mean I dont miss the older time when he was all mine. Okay but rationally I understand, then I accept. And then the other thing is thinking, okay it’s a phase, I don’t know how long this is going to take. But it will end. There is going to be a next phase.So it’s not easy. 

(Jennifer)

No it’s not. Yeah, it was interesting because my mom mostly shunned – there weren’t alot of male residents where she lived, but she kinda swatted them away. And it was funny, this year twenty twenty, when I showed up to visit with her and it happened to be her wedding anniversary. And she’s talking to some new gentlemen resident and I thought well, this is interesting. They were just chatting. That’s what my mom did, my mom would just chat. And it was wonderful like I said when I could involve another resident and we all just sit and chat. They could talk to each other and not drive each other nuts and it gave me a little – it gave me a chance to step back mentally and just kind of observe the relationships that she was having. So it’s kinda similar although I never had to deal with the whole boyfriend-girlfriend thing.And I think you’re the first person I’ve talked to surprisingly that is mentioned that their spouse had a little bit of a twinkle in their eye for somebody else. 

(Joanne)

Oh yeah, they were together every day, they were holding hands and in my book, I talk about the honey this, honey that

00:25:00 – 00:30:02

They don’t know each other’s name . It’s just cute to see. But one day I went there and he put a big kiss on his face and it just pierced my heart.You know you still love this man as a husband so it was experience. 

(Jennifer)

I’m sure! I did read a story in the recent past about a wife visiting her husband in the care residents daily and he forgot who she was but she was there every day and he fell in love with her again and asked her to marry him. They did a, you know basically a wedding ceremony for these two. And I thought wow that’s really pretty,sweet that he basically picked her twice.I know she was there daily and I don’t remember, like I’ve talked to some guests that go and have meals. They go and have breakfast, and then go do errands or chores or whatever, and then go back and have lunch. Or they’ll have at least two meals a day with their spouse and I always enjoyed having meals with my mom, it got a little trickier at the end when she was having difficulty. Like the day she tried to eat, what was it – she tried to eat a hamburger with a fork and I’m like it doesn’t work that way. I didn’t have a problem with her using her hands ’cause that’s fine. But it was funny and I’m like you have finger food and you’re trying to use a fork and then a meal that required utensils she was trying to use her hands up.

 I’m like oh boy this is crazy. And you know it got, at the very end, it got to the point where it was difficult to take her to a regular restaurant because people don’t understand and she was very conversational still. Right up until the end she walked and talked and you know it was difficult to know that she had Alzheimer’s. You could tell something wasn’t quite right with her because they don’t look quite their old selves but yeah she would fuss about the mess. I’m a messy eater and food would hit the table and she’d spent three minutes cleaning up the table and it’s like please just eat. I learned at the very beginning of this year, I would go, because when we’re in the process of moving this worked quite well, I would go and pick her up after her lunch and take her out and I would have lunch, and then I would just get her something to nibble on.And if she ate it great! I didn’t have to worry about her getting enough nutrition and that took a lot of the pressure off of me. You know,  fussing about you know please get some of this nutritious – healthy food. Please eat this healthy food and get it in your system and that angst, she would pick up on that stuff.I could be like oh wait no relax,relax and she’d pick up on it so quick and her immediate reaction would be to get angry and so that was not good. And I had an incident you were talking about when your lesser angel takes over and we don’t have such a great day. 

She at the very end was getting to the point where she was clawing people. If she was angry at you she would grab your arm and just dig her fingernails in and it was not pleasant. She drew blood on some of the caregivers. So I was embarrassed; she drew blood on my husband too so I avoided that but this one day I don’t know what was wrong with me. But I just hit everyone her trigger buttons and I got to the point where I’d carry nail clippers in my purse so that her nails were getting long I could just easily trim them and Give her a little hand massage and try to make it nice. And this one day, she and I were just at odds with each other. It was just one of those visits, I should’ve caught on sooner and cut it short because we were just irritating each other and it was escalating. She got angry with me as she grabbed my arm and I grabbed her hands and pulled them away from my arm like no you’re not going to do that to me. And I waited a minute and I said, oh my goodness.

00:30:03 – 00:35:03

Youve got a couple of really badly chipped nails.Can i fix this for you? Next thing I know she clawing the daylights out of me and at that point I was like I’d had it. And we were sitting on the bench outside the door to the memory care and I literally just grabbed her elbow and propelled her in  and opened the doors and I said, enjoy your life and slammed the door and left. And even one of the caregivers, one of the MED techs, she’s like man, I remember that day, that was not a good day. I got to the point where I knew if I even attempted to stay, it was going to get worse. I said, we’re already at bad, it didn’t need to get worse so, I felt badly because that was maybe a month and a half before she died. So was like, Oh, great that’s not one of the last memories I wanted to have but you know it is what it is. 

(Joanne) 

Women use their claws, men are different.Clyde would get very mad at the staff in the care facility. So he grabbed the staff by the chest and shook her against the wall. Yeah so eventually they kicked him out. Yeah, we’ve been everywhere that’s why I said I wanted to write the book because we’ve been everywhere.We’ve been to the care facility, we stayed at home then we got into another apartment.

(Jennifer)

 Crazy, crazy journey! Crazy. Yeah my mom would swear at people like the day that she clawed my husband we were trying to figure out why she was having such pain while walking and I really wish doctors  paid attention.Because as I mentioned before we started recording she fell on December thirtieth and she had a regularly scheduled neurology appointment January six. And so you know we’re talking a week. So I picked her up early and took her to urgent care and they tried to do x rays and she was not having it and so at the end of January, right in the middle of moving. I was really trying to get the stitches taken out that she’d got put in on December thirtieth but the doctor’s like, let’s do a x ray again.So she was all for it, she understood why we needed to do the xray until we get into the exam room and she just like, nope not doing it.And I had rearranged my morning to make this happen for her so I first tried you know sweet talking her into getting it done. And then I tried to guilt her into it by saying, look I had to rearrange my appointments so could we please get this done and oh my goodness she mentally just dug in. And so I said, can you stand up for me and she said she did and literally put my foot next to hers and just pivoted her and plumped her on the table.

Well, she wasn’t real happy about that, and she literally – the X ray technician was fantastic because man she got my mom in the right position and just hit the button, three x rays in like less than a minute. You know normally they worry about getting you all protected, nope. I’m not even sure the  X-ray technician was wearing the lead apron or any of that. St have time to fool around with protocol and I appreciated that so she’s laying on the X Ray table, which is like metal. It’s like, really not pleasant, and shes like I’m going back to my room now. Like okay, that’s great. Let’s go. And she just layed there with her hands across her chest like a corpse and I’m like this isn’t going well. And so I’m like she’s mad at me because I basically forced her into this. So I basically stepped into the doorway so that she couldn’t see me and the x ray technician was a gal and she’s sweet talked my mom and my mom basically referred to her in terms we don’t like to say to people. It’s not polite and the gals like I’m like ehhh,and I’m like let’s just give her a minute to see if she’ll calm down if we stop bugging her. So we waited two or three minutes and she went and got another nurse who had not seen my mom at all and she came in super sweet. She must have worked with kids or something and she came in and it’s like what’s going on, and my mom’s like everybody around here are assholes and I’m here like oh lovely. And you know and there were some other words in there too. And so the gall tried to sweet talk her, and at this point I’d already called my husband  who was literally like five minutes away.

00:35:04 – 00:40:01

And he comes over and he’s like what’s going on mom and she’s swearing at  people and he goes, I need your help. Her dog that she had she lived with her dog in the memory care for the first eighteen months, and then they renovated and the dog really needed a lot more care than she was able to get in the memory residents we had to rehome her. The dog also weighed twice what she should have so that wasn’t good anyway.So, he’s like, I really need help with Misty. 

That usually worked because my mom had dogs all her life and he’s like I forgot exactly what the excuse was but he’s like can you help me with misty? And my mom’s like no she’ll be fine.So he reached and goes come on, let me – he’s like I know everybody here is blah blah blahs, lets just get out of her. And she scratched him and drew blood holy talito. Then she was mad and he was mad; it was not a good morning and I think if he literally picked her up and put her in the wheelchair. Because it was very painful to walk and all the way out to the car, it was these people are blah blah blah and na na nas.I’m like, oh this is gonna be a fun drive back to the residents. And he was so angry, he was tired from moving and angry. And he slams the door and he’s standing there next to the car and I roll down the window. I’m like what? And he goes, are you gonna be okay? I’m like just leave, itll be fine. I dont think shes mad at me anymore, shes mad at you.  It’s like a one advantage like just give it some time,  she’s gonna forget who she’s mad at and so I rolled the window back up and she’s like these people are all blah blah blah and  I’m like yeah, they are! Let’s get the heck out of here. What kind of reality is this?

 That was the very end of January, I think it was likeJanuary twenty seventh. It was a thursday and i was like this is the worst. Whatever the last thursday of January was it was just nuts but yea it was like that was that was the last couple of months was just constantly doing everything you could not upset her because she’d literally start swearing at people and calling people obnoxious names and scratching people. Fortunately they never threw her out though. 

(Joanne)

One thing useful to remember is when they get mad, after a while they don’t remember. As if nothing happened; you may still be upset but they will have already forgotten. 

(Jennifer)

 We had an incident where she’d been in the care facility about six months with her dog. And the MED techs, the executive director, and I had put a program in place so that the dog would get fed properly so that maybe she could lose some weight. Because the excessive weight also caused other problems that were gross. That’s probably enough of a description. And so I was literally trying to shove the dog into my mom’s room at dinner time and I was gonna go and this other resident had gotten it in her head that it was her dog. Was not happy that I was stealing her dog. And she reached out and grabbed my mom’s forearm in an attempt to get my mom to help me stop stealing this other Gal’s dog but it was my mom’s dog. So I’ve got these two old  ladies fighting and my mom’s like if you touch me one more time I’m going to knock your block off and I was like, uh oh.Her room was directly across the hall from the doorway to the courtyard. 

So I literally shoved her into the courtyard and she was so angry at this woman because this woman thought my mom’s dog was hers, my mom was shaky and I knew I’m like this is the one time that no memory is gonna really play well. And I just kept saying, Oh it’s so sad that you know so and so thinks that misty is hers and all her mind is so bad. I just kept repeating this pity and all of a sudden my mom looks through the window goes I think we’re having dinner. And then I get home and my dad had signed them both up for the NRA. We won’t even go there. You know I mean California, it’s a blue state and I’m not a fan of the NRA. And I’m getting all of NRA mail at my house and it’s like I think the mail man’s about to leave a bag of dog stuff on my porch but I have my own dog.

00:40:01 – 00:45:01

So maybe not. And I get home and there’s this big postcard. Black background, red angry looking letters and it says free gun and it’s addressed to my mom like, yeah that’s what she needs. That was the start of my Alzheimer’s caregiver journey for other caregivers because I’d put that story out on facebook and a past photography client of mine who’s a business coach said you should write a book. And I said, I’m thinking about it but it’s probably something I should do after mom’s gone because it doesn’t seem like the right time to do it now. And that was September twenty seventeen and I seriously didn’t think that she would be gone by March of twenty twenty. And I went looking for a podcast that talked about the stuff we’re talking about and there was essentially one and it wasn’t my flavor. It just didn’t speak to me. So I’m like a big podcast listener and one of them I listen to basically talked about how to start a podcast I’m like, oh, that sounds like a good idea.

(Joanne) 

 So, you start it!

(Jennifer)

 I did and it’s been wonderful, also one of the other questions that you address in your book is what does triumph mean when you’re fighting a war with a disease that has no cure? So what kind of, like I just described a couple of wins for me.What were your triumphs? 

(Joanne)

You know I was a university professor, so maybe sometimes my talk is too fictitious so I apologize for that. So you know I am thinking, you know this one is going to die and the inbetween is just so much. Heartbreaking stories and is so hard, so whats the reason to be optimistic? What are you optimistic about? You are losing your husband who is dying little by little, everyday you are exhausted.We will live for hope, right. Human beings live for hope,so you know I often think about these things. So one thing is looking for small things, we talk about all those little funny moments and things like that, you know, little moments and I do have lots of these moments. And also I’ve felt like at the end, the disease and the caregiving did not turn me into a bitter person. Don’t let the disease defeat you, don’t feel defeated, like all my spirits are gone. In between I met people who helped me and I helped them,  we helped each other and it assured me with a belief in humanity. 

The world contains lots of love, sympathy, and understanding. And people still need you, even in these moments I was still able to give people something in return, along with receiving so much from other people. So at the end I felt the triumph for me was that  humanity wins, it made me see that life can be full of hardship and painful things. And yes there is sickness and death and there is bytrayal, but still I choose to see the world as full of compassion. And people are willing to help you and you can  do something good for other people. Not just for my husband, also for other people. So that gave me a sense of worthiness. And it make me feel happy. So that’s my triumph, at the end I feel like I’m stronger. I went through another very hard journey. And I’m still a happy person, I’m still optimistic.

00:45:01 – 00:50:00

And I still believe that people are good.You know like people say, glass half full or  half empty. There are lots of bad things in the world but you wanted to be a better person, you wanted to be a part of the good, the kindness, the compassion so the world is a better place.

(Jennifer)

I agree with that. It’s been a bit of a challenge losing mom at the very start of the pandemic. And not being able to do a celebration of life and it’s just been – Twenty twenty has not been a great year.  I am frequently on twitter with a big podcast group and a lot of people will comment about  something in the news and they’re like I did not have such and such on my twenty twenty Hell Scape Bingo card.Because it  seems like every week is some kind of, it’s like really? And we get the Hera dust storm blowing across parts of the country and we have a pandemic and I’m in California. So we’re already in our fire season, and the riots and I’m like holy tolito! I actually told my husband I said somebody should actually make hellscape Bingo as a game because I think people would actually find it pretty funny and it’s interesting.They can joke about something that right now is bad and god only knows what will be bad next week or next month.I try to on days when I’m just having a really rough time, I try to either go out and take pictures of flowers or yesterday was a rough day and I don’t know what was going on with my emotions. Just everything was irritating me it was like my husband breathing and it was like ahhh. I have three golden retrievers and the girl dog sleeps on the couch and she’s literally draped over the pillow. And I’m like okay well, I’m very glad that I can provide such a comfortable life for you. She’s on the couch right now. But I looked at her and I’m like I need to learn this this amount of zen because and I just watched her for a while because it was so calming because she was just so relaxed. 

(Joanne) 

You know that is very important. I am sorry I cut you off. Okay, so in my book I talked about dogs because they are a part of therapy. Especially since most of my family is in China so I have less support fro family here, especially  when I was in Texas.You know my husband and I left. In a marriage, husband and wife, we are each other’s safety net, right. So when you lose a spouse you lose a part of your safety net and you have to man that safety net yourself, and so I think that I did that I relied very much on caregivers and friends. And then the other thing is to find those little moments.Even today you look at the world that we know there are so many things going on it makes you feel like you are losing your sense of control. 

Come back to the small world. I have my dog. I have my beautiful home and I can still take a walk, like in China when they had pandemic, you cannot get out of your house literally.The Communist countries they secured, they have someone at your door that won’t let you go out. We still have the freedom here you know in large part.

(Jennifer)

 My whole attitude with the stay at home, for some of us its been orders and other places its been recommendations. It’s not political, it’s not my right versus your right; its what we need to do to take care of eachother. 

00:50:01 – 00:55:04

(Joanne) 

We need to take care of each other. We need to practice our common sense. Some things are not political, it’s just common sense everybody can understand commonsense.

(Jennifer)

 Unfortunately I think we’ve politicized common sense sometimes.So it’s definitely a challenge. So let me ask the one last question, and then maybe we can wrap up a little bit not here so were not here for two hours because I can talk all day. So, how can we find our way on this difficult journey of caregiving for a loved one with Alzheimer’s? And I think this question is more pertinent for spouse caregivers than maybe adult-child caregivers. Especially the sandwich generation ones because I know I was torn between my life and taking care of mom. And I found my way by starting a podcast.

(Joanne)

 Okay. Yes, and that’s wonderful. It’s wonderful. You See.You doing the podcast is like me writing the book. You have to have an outlet. And this outlet not only is a way for us to let out our hurt, frustration, and sometimes anger. It is also a way for us to feel we are useful. Maybe to other people, and that’s very important to human beings.Like I dont get feedback from my husband that he needed me, i just knew he needed me, but hes not able to voice that. We all need to have a sense of your self worthiness, that we’re doing a good thing for a good cause that is bigger than one person .So back to how do you find your way? I don’t know if there is a simple answer you know at the beginning when my husband was first diagnosed, I knew I loved him and I will take care of him. But I didn’t know where my limit was, could I go through this? You dont know until you go through it. You can make all kinds of promises, people get married and on their wedding vows they promise to stay together but once  you get on this journey you find oops I couldn’t do it, right.

 So I often time  wondered will I get through this? And still hope his intact and not bitter or angry and all of these type of things. And I have seen well spouses angry,really angry. So I’m thinking one is the determination? One thing is to try and find happiness in every step, find some happiness or worthiness in your life. Since the feedback from your husband is not there, you need to find another source of feedback to give you the confidence that you are doing the right thing. And you are strong. I think that is very important, and the other thing is that I constantly am telling myself it’s a phase. It will go. And it will be over. I don’t know when, but it will. I’m not a religious person but religious people they have that sense of confidence of God planned this and God will take care of me.  know off that this and God won’t take me. I did not have that sense but I knew it was a phase. And then I think the other thing is acceptance. Accept that this situation is a hard situation. And I will make the best out of this bad situation. And then I will accept myself. You know I have limits when I get really frustrated you know I had those outbursts and it’s okay, I accept myself. It’s okay. Everybody has a different way, you know some people keep the patient at home. Some people cannot take patients at home. Just, fine whatever way and I think a society now is more aware of this disease.

00:55:04 – 00:59:56

I think for many caregivers the most needed saying is someone to listen to them, to understand them. I know I’m fortunate. I had hired a caregiver for the majority of the time but in the middle  the caregiver had cancer, so I had to deal with that so that’s why I wanted to tell my story. There are so many things that happened during the journey and it’s not planned, they were unexpected.You just have to be flexible, see what’s the best in the worst situation. 

(Jennifer)

Which is a great question to be asking of this particular year. My goal with my mom was to always do things that brought her a little joy or you know better quality of life. That’s why I made the effort to take her to the park and watch the kids at the pool. And there were times because  she didn’t walk – She walked fine but she didn’t know that she walked fine. So sometimes getting her from the car to where the kids were, sometimes that  Kids were that was so frustrating. And she weighed significantly less than I did and there were times I wanted to just throw her over my shoulder, which she would not have appreciated at all. Yeah and what I did when she was watching the kids ’cause you know, eh not my thing is I would just put my head back on the bench and watch the trees and the sky.Breathe deeply and just try to just relax and just enjoy like the little slower time which I’m personally a little tired a slower time right now. Having spent the whole year pretty much not going anywhere.

(Joanne) 

 One of the caregivers I had gave me a very good perspective, he said there are good days and there are bad days.If it’s a bad day just think tomorrow may be a good day. And that helps me. If it’s a good day then savor it. If it’s a bad day just look at tomorrow and say it’ll be a better day. And live in the moment and that helped me a lot.

(Jennifer)

That is actually excellent advice for life, but especially for caregivers.

(Joanne)

Yes, for caregivers. You will have terrible days. You just think you know the world is upside down.

(Jennifer)

Yea I feel like our  world got twirled around this year but you know we’re still here, everybody’s still healthy and  doing well. Sometimes you have to focus on the basics and keep moving forward because you can’t go backwards.

(Joanne) 

 You cannot go backwards, exactly. 

(Jennifer)

This has been fantastic and I appreciate this very much.Do you have one last tip for people? I guess they your book is out today and there’s a link in the show notes where they can go get it. Hopefully bookstores are open again and you can go to the bookstore and get it. 

(Joanne) 

Yeah, its first going to be on  Amazon.

(Jennifer)

Which is realy nice, it’s a picture of her and a drawing of flowers in the background. A lotus? Yes lotus flowers, those are pretty. I love those. Well, I wish you best of luck with the book hopefully, all the listeners out there even, if you’re a adult child caregiver like I was, it’s probably still useful book to read ’cause every little tidbit of information every little tool you can get just one more coping technique.I’ve learned so much towards the end mom’s life and after she passed away that I wish I had known earlier. So I try to help people learn all this stuff earlier in the game that I got so I appreciate that. 

(Joanne) 

Thank you very much Jennifer for giving me this opportunity.

(Outro) 

 I love it when guests share honest, real conversations and I hope it makes you feel less alone. I know it always made me feel better to hear that other people went through I was going through. Be sure to check out our website, lots of information, follow us on social media, and as always, I’ll be in your ears again next Tuesday.