Caring for a Child with Early Onset Alzheimer's Disease with Jim Russell

Virginia and Steve are joined by Jim Russell, MBA, PhD, who shares his emotional story of being a caregiver to his mother with Alzheimers and then to his daughter, Lynne,  who was diagnosed with early onset Alzheimer's disease at 48 years old. He describes the challenges in managing his daughter's finances and her family as the disease has progressed.   

Transcript

Intro 0:06  

From the University of California, Irvine, this is UCI MINDs, Spotlight on Care, the podcast where we share stories, experiences, tips, and advice on caring for loved ones affected by Alzheimer's and other dementias.

Virginia 0:23  

Hello, and welcome to Spotlight on Care. I'm Virginia Naeve, and I'm here with my co-host, Mr. Steve O'Leary. Today, we're going to speak with a man who first learned about Alzheimer's disease when his mother suffered from it and passed away in 1991. Then, starting in 2013, he noticed symptoms of dementia displayed by his daughter, who was at the time 48 years old. Before we begin, Steve, you have led a support group for men for a long time now. Have you ever had a man tell you that it was his child showing symptoms of dementia or suffering from it?

Steve 1:09  

No, I think that Jim's got a unique story. I do think that there's an important piece of information about it, which he which he accurately describes, Jim actually needs to be in a support group with children who are taking care of their parents. There are no support groups that I know of yet that are, you know, parents taking care of their children. So it's a unique case. I do think that it's important to have people that you can relate to and that can tell you their story. And that's why we're so excited to have Jim on the on our podcast today.

Virginia 1:52  

So true, so true. I've got to say that I've known and met many people who have had more than one member of the family suffer from dementia. But I've never spoken with anyone who had a child with it. When you think about it, there are actually many parents in this situation when a child, who is younger than 64, gets what they call early onset dementia. Okay, so now let me introduce our guest. Our guest today is Mr. James Russell and he lives in the Seattle area. He cared for his mother when she had Alzheimer's. Then in 2017, had to start caring for his daughter Lynne, who was diagnosed with Alzheimer's and is now on hospice in the memory care unit of a community in Seattle. Currently, Jim has a website with his blogs called, get this it's a long name, neverthelessdementiawepersist.com dedicated to telling his story about caring for his daughter. Welcome, Jim. We're so glad you're with us this morning.

Jim 3:09  

Thank you, I'm glad to be here. I hope what I've learned is helpful to your listeners.

Virginia 3:15  

I'm sure it will be. So Jim, tell us about your daughter, Lynne before she got Alzheimer's,

Jim 3:22  

She was a very highly effective, take-charge person and all the way through school. And then she began work with Microsoft and as a recruiter, for a number of years, recruited a number of friends, because she was an early employee there. Then she worked for the Bill and Melinda Gates Foundation, worked with as an independent consultant, and then finally went back to school to get her teacher's degree. And in the process of that she was married and had three boys. And they were with her when she decided to quit Microsoft and Bill and Melinda Gates Foundation and just go to school. So she got contracts and then taught, which was her love of her life is to teach special education. So our boys obviously are the first thing and then she ended up in a divorce. And she shares equal custody with the boys with her ex-husband, and that's worked out well.

Virginia 4:23  

So in 2013, you started noticing symptoms from Lynne, who was then just 48. Tell us a little bit about that.

Jim 4:35  

Well, actually, the entire family was and that's one of the things I want to make sure I help your listeners understand. Our whole family has been involved with this from the very beginning. And we all noticed that there were some changes in 2013. She would come to parties she would, she'd come to dinner and she'd come to me. She forget what she bought. She get lost. She couldn't keep track of her keys. And those escalated over time. But our family got into a big argument as to whether or not we needed to have her tested. One of the arguments was, well, my mother had it. Did she have genes that give Alzheimer’s to anybody else? No, she did not. No need to go into more testing. My daughter and my son said, We need to get testing about what's going on with just a cognitive test, a simple cognitive tests. We argued about that for two or three years. No, we just did not believe she had Alzheimer's. We knew Alzheimer's. We didn't believe it, 47 years, 48 years old. She couldn't have Alzheimer's. So the first thing I learned out of there, it's a simple test, just take it.

Virginia 5:45  

Right, right. I'm, I'm sure that when your mother was diagnosed, it was troublesome inside, but eventually having to insist that your daughter get a neurological exam that, that's hard to accept.

Jim 6:01  

The first thing we did was, of course, not the neurological exam, but that one-page test. It just takes 20 minutes to draw a circle in and we didn't do that the doctor, her doctor didn't think to do you got to remember to think it's a simple test. Take it, take it, take it.

Virginia 6:17  

And I can understand why she didn't want to. Tell us what she what she was afraid of. What were her hesitations?

Jim 6:26  

Well, she was actually suspicious in 2013, 2014, In her last year teaching at one of the school systems in Renton, she read Still Alice, she shared with her friend about dementia of Alzheimer's was really curious. Her very good teaching friend thinks that Lynne was trying to tell her at the time that she was afraid. But for her, it meant losing her children had meant losing her job, her income. She was 47 years old. She owed debts to the federal government for her education, they paid for it completely and she wanted all those forgiven. She didn't want to die. You know, she was losing her independence. She knew what her grand, her grandmother looked like. She didn't want to live like that. She just couldn't want lose control of her boys and helping them with their education. So she absolutely denied that she haven't to herself first. And so that, I mean, I can't imagine the terror she had. And we needed, we needed to get her counseling sooner. And to get that test clear.

Steve 7:30  

How did you? How did you get her to understand the importance of the testing? I mean, she understood the importance. How did you get her to agree to do it?

Jim 7:39  

She was failing at her office. She had taught all her boys about how to run technology. And yet she was telling the boys I can't figure out how to do my teacher prep, because you have to develop an individualized education plan for every student, you're teaching in special ed. She couldn't do it. And she was failing. And her good friend was noticing she was failing. So she agreed to take, they might have tests and they came up with a definition of Mild Cognitive Impairment. neurologist said you willing to try another, go back to work. She said, I want to try six months later, she said, I can't. And six months later, they did significant neurological and psychological tests on her. And they came up with an advanced early onset Alzheimer's. In 2017, February, that day, she quit working. And next work day, we signed powers of attorney over to me and Karen. And she went with us all the way as our the new authority over her life.

Virginia 8:41  

So I noticed that you said that your mom had her finances were kind of simple. You know, she had Social Security, she had pension, she had investment accounts, but your daughter being the age that she was she was still supporting her family. It was much more complicated. And you had to take that over.

Jim 9:03  

I did it was it was a process of talking to the public school system and then finding out I had to talk to the insurance company. And finding out I had to talk to the students, the teachers union, then and talk to the retirement center. Then I had to talk to the personnel office within the SP within the school system couldn't talk to us. And at each point in time, guess what they wanted. They wanted forms filled out. So I filled out forms and then guess what they wanted. They wanted the doctor signature. So I sent them all over to the doctors. And then guess what? I started spending time calling the doctors saying did you discover those forms? Could you please get them out and send it to them? And then we tackled social security because that's where she was going to hit after Cobra benefits and Social Security started the whole process over and it was before they had the accelerated program that they have now. We just had horrible time. I had to go down with her so that they could see her say “Yes, he's my dad”, because she couldn't remember her house number, her phone number or social security number.

Steve 10:06  

You were talking about the steps that you went through, which I think is great, you know, hey, here are the steps that I had to take. One was, you know, I had to be her legal guardian two was this three was that if you enumerate those steps, that'd be great. Let's start with the first one.

Jim 10:22  

Sure, the first thing we had to do, of course, was get power of attorney and she signed that over immediately, I took financial, my wife took medical. And then I went in, I called the school office, they said yes, to go on medical leave. So I had to fill out medical leave forms. Then she had use her vacation time. So I had all these conversations about the way she could go off work instead of just quitting. And then I found out I had to talk to the insurance company, they sent me forms, had the names of the docs, we get them doc back from the doctor that I had talked to the Union itself, because they were the ones that were handling some of the benefits, they wanted forms. Retirement center wanted forms, Social Security wanted forms, Social Security said she's gonna go on disability. And then I said, well, she got to go on Medicare. Each time they wanted forms, they wanted interviews, and we had to fill them out, get him to the doctor, the doctor had to sign them and send them to me. They lost track of them, you know. So it was, it was just one discovery after another of what I had to do with her finances. She also 

Virginia 11:29  

And you as a father, you as a father had to take care of this.

Jim 11:33  

I did. I did and fortunately, she had it organized very well. But she was only one of the very few people who got forgiveness on her student loans. Because she did everything right, just less than 1% of the people did it. So all I did was make sure I got the paper in and turned in bad to discover that I had to do that. It was an unraveling all the things that I had to do, it was a very, very complicated. And of course, I had to deal with her husband, who was the partial owner paying alimony and covering some of the medical costs, but not other. So we had to figure out the way to share costs there. It was just very complicated finances. 

Steve 12:14  

What would you recommend, you know, if somebody finds themselves in this situation to help them organize this or prepare for this, as you were getting ready, you said, you know, it was great that Lynne had a lot of things organized, but what did you have to do to kind of get your arms around all of this?

Jim 12:31  

Well, talking to each and every one of those administrative people and saying what do I have to do? And I and, and, Steve, I'd love to have some kind of a list that told me what to do before I went into it. But I had to create the list as I went, each office I talked to said go to this office. But so the first thing you have to do is get very clearly what your employee benefits are from your employer. And that whole setup. So then once you get those, then you can start working with and that means working with our insurance company everyplace else, then I can start going to Social Security, and making sure that those were taken care of. So it was really that kind of a two-step process there. And then I find out that she needed legal advice, because if she was going to run out resources, she may need Medicaid. So I had to get an attorney who really understood Medicaid, and what would happen if her resources went out. So I had to put in and then I discovered she had to do something about a retirement plan. So then I had to tell a State Retirement Agency, and all those types of reforms. I don't know how to help anybody to tell him how to make sure that the forms, but they've got to get some kind of a very thick notebook. You know, I had a very thick notebook for each one of the agencies I was working with because they would send me a letter. They even sent me a letter saying does Lynne still have Alzheimer's? Yes. I had to have a doctor confirm that she still had Alzheimer's.

Steve 13:59  

Yeah. Okay. Great. Thank you. I think that you, you enumerated many of the things that you had to work through. So that was good.

Virginia 14:06  

It wasn't just, you know, those types of horribly bothersome details to take care of. In the meantime, her house is falling apart. You know, there's, there's running a house and she was still insisting that she stay at home. So there's cooking, there's home repairs, there's house cleaning, schedules for family. You decided that you and your wife should move closer to where she lived. So you could help keep an eye on some of these things. And you said it was it was difficult.

Jim 14:45  

We lived in Wenatchee which is an hour and a half, two hours away if there's no snow problems in the mountains. We were I was coming over once or twice a week. And finally one day my wife said we have to give up in Wenatchee and moved so we moved there. And that made a big difference. It made a big difference psychologically in the boys. It made a difference, Lynne so she wasn't as isolated. But it's not. It's not like taking over your parents. My wife's my mother's care. I knew what I had to do for it. She just said back and accepted it. But I'm talking about my daughter, who now has responsibility for her boys. Am I going to tell her how to run her boys? Am I going to tell her ex-husband how to handle her boys? Am I going to tell them how to take care of their house, I own real estate, I rent stuff. If she was a renter, I had kicked her out. But the landlord was happy with her. And so really cared about her knew about it, and let it go. And she could have he could have been forced on. But the problem was, there was also the danger. You know, if you don't take the lid out of the dryer, my wife explains to me, your dryer can burn up, you know, so it's all of those things that go in the house. And I'm thinking, what, what authority do I have to tell her how to run her kids how to live her life. So we got home care. And we brought that in four times, four hours, twice a week, she became a good friend, and she was the one that was discovering, well guess what, the food in the refrigerator does not match what the boys want to eat. As a matter of fact, the food and refrigerator shows there’s eight packages of salad and no, you know, milk. So she, she got help organizing that. She wasn't safe cooking, so she started. Now, by this time, the boys were in college. Both of them were under such stress that they backed out of college, one failed, and one of the other one just quit going to school. So they came back to be with her. The three of them stay together with her except every week they had to go to the their, their dad's place. So you know, what authority do I have on telling her father, their their father how to handle the boys, you know, their bedrooms were ankle deep in stuff we would never have accepted in our family. So I had to figure out how I could get their trust that what we were really doing was something that they cared about. That was a biggest thing. Because we had to work on it as a whole family. And once I started doing that, once I sat with them and help them clean out all of the stuff that was in their bedroom, they began to trust me as grandpa. And they began to say, Grandpa, we found mom in the kitchen on the floor with a bottle of wine. And so we had to confront her and say, no more alcohol. And she said, Okay, I get it. I'm scaring the boys. So they began to tell me what they were dealing with. And so once that happened, it could have 

Virginia 17:51  

That took a while for them to be to trust you enough to be able to say exactly what was happening.

Jim 17:57  

It did you know that with a 14 year old boy into 19 year old boys, you know, and they would talk to their father and the father, who by this time had a very close girlfriend, they the boys love the new stepmom. And they would say, Dad, you know, he said, hon, I can't tell your mother what to do. I'm not moving in on that. You've got to talk to her. Well nobody talked to us, Karen and me. And that would have helped us a lot. But so but what happened was we met with Alzheimer's Association. And their people told us really what we had to do. The one thing I would have done earlier is given Lynne counseling. We figured she didn't need it. Of course, she didn't think she needed it either. But that was where I wish we had started because she was terrified of dying. So she would explode in rages you know, don't want to die. And, and so, so that and then we after we clean that we had bedbugs and we discovered those. That's how that's how I earned their trust by sitting in the bedbugs and helping them clean them up. After that, we had a family council. My son was there, my daughter was listening in on Zoom. The ex-husband came the three boys were there. And the counselor facilitator from Alzheimer's Association sat down with us and let us through the facilitation in early 2018. We had been working on getting that family council since September, but nobody could come as long as there was a you know bedbug problem and everything else nobody would come because they agreed to, finally we got the agreement. And once that happened, it all switched, almost like you're turning on the light.

Virginia 19:45  

And that was that was 2018 and everybody was kind of in agreement as to what was happening. So she finally Lynne finally agreed to enter assisted living is that correct?

Jim 19:59  

That that allowed her because the husband stepped up and set up fail medical, he stepped up to take, I'll take all the kids in my apartment, didn't have room for then. All those things will take care of the dog. He started to do all these things. And he started to get on the boys who were not going to school. The boys were staying at home to take care of mom, because mom kind of wanted them to

Virginia 20:21

 Well their life fell apart

Jim 20:22

 They leaned on each other. And we were all over the boys to go to school and quit solving, having absenteeism problems. And my youngest grandson said to me, she kind of knew I wasn't sick, but she needed me and so she kind of let me stay. So she was fighting off loneliness. So when all that happens, she said, I'll go into assisted living.

Virginia 20:49  

And when she did, apparently, she was a, she was a social person. And when she did move to assisted living, of course, when she was one of the younger ones, and one of the positive things that happened is they she kind of helped the staff didn't she? 

Jim 21:07  

She did and that's we couldn't get her to go to any of the support groups for people with Alzheimer's, because all of them are 20 years older, you know, shed go to one, go home and say Those aren’t my problems, Dad. So when she went to the Alzheimer's Association and saw it and went into this facility, they told her they were going to treat her like staff. They were the same age. I mean, she made some really good friends there because they looked at her and felt, there but for the grace of God go I. She's the same age I am. So she made friends with him instantly. And they said, Okay, help us care for them. Because she was and look what her profession was recruiting, taking care of nerds, as she called them who came to work in Microsoft engineering, and really needed, you know, communication skills. She did it with school systems. She did Bill Gates Foundation. So she loves caring for people. She walked up the elevator on the first day she was there and she said I found a new mission. So she really believed and acted as if she was one of the caregivers there.

Virginia 22:06  

She really did need to be there. And she was finding a, you know, a purpose in life.

Jim 22:13  

She actually and I also want to take, we let her participate in a decision about where she went. She called on them, you know, without an appointment, walked in the door, way she did all her life and said, that well are kind of looking at me staying here, she met a general manager and a care director and she got a tour. She came back from the tour and said, okay, that's okay for me.

Virginia 22:35  

You're, unfortunately your wife passed in 2019 with pancreatic cancers, so you've just been hit over the head again. And of course, Lynne was very upset with that. Did she know what was going on? Did she, was she at the point where she knew she just lost her mom.

Jim 22:55  

She was there the whole time with her mom. From the time we got the diagnosis, Lynne was there to care for as much as she possibly could. Because Lynne was defending on her. Because Karen was constantly saying, Are you taking your medications? Have you done this? Have you done that? So  the two of them work very closely together. And so she knew it. As a matter of fact, toward the end, when we got to hospice, we couldn't take care of it in our house anymore. And our family was falling apart. And I call a just and said, Can we do hospice for my wife in the same facility, where Lynne is, and I had talked to Karen about that. I said, Well, you think about moving into the having hospice with your daughter. And she just went, Yes, make it happen. So we did, because now she could have her daughter there, instead of being in her house. Half hour, 45 minutes away, my daughter sitting there worried about my wife, and my wife worried about my daughter. Now suddenly, they were together. So it was she was very instrumental in knowing and misses her daily when I mentioned her name, and cries and said, I miss her every day.

Virginia 24:08  

I know that there are caregiving issues that are really uncomfortable. I know with my mom, I've got to tell you, I I could not toilet, my mom or change her incontinence products. And I know that when your spouse has dementia, that's an issue. It's tough to do. What types of caregiving difficulties do you have since you're caring for a daughter?

Jim 24:39  

Well, I was you know, I said toileting issues. I mean, I changed her diapers when she was three, I couldn't do it anymore. And so that's why we had to have somebody go with her. That's why she she needed a little help whenever I'm with her now, and I think she has to go to the bathroom. You know, I just go to the caregivers and say guys, I can't do it and one time, she was so desperate that she had it for the toilet. She was at the stage still is at the stage where I'm not sure she could have turned around and found the toilet, was afraid she was going to hit the porcelain crack her head. And she was starting to pull down her panties with her right thumb. So I put my thumb in her left, panties just to kind of push her down and spin around and sit down. She slapped my hand away and said, Dad, what are you doing? I'm out of here, kiddo. I'll get you some help. And so even at this stage, that was just about two weeks ago. So it was those things I just couldn't do. And I just count on other people to do them. And the other thing about it is, when you take care of, when I take care of my mom, I moved her out of Peoria for her, you know, a few friends that were there at that age. She didn't know anybody. But Lynne has a whole karry of friends up here from Microsoft from all the places she worked from the neighborhood she lived in. And what I found out was they were interested in helping, they actually called us and gave us information about a time when she had gone out to dinner with them and then had passed out. And for reasons that they couldn't understand. So they got in touch with us. And from that they've gone on, they've done parties and everything else. And the thing is a dad, with your daughter, you know your daughter, my daughter learns to tell her dad exactly what he needs to know. No more, you know, but she has friends that she's raised kid with, she's lived with she's worked with, they can have memories that they draw. Frankly, I'm a dry well, trying to come up with memories that I could get to Lynne to dream. So the more I work, the more I realized, I gotta get as many friends as possible into help and share with Lynne because they're better at it than I am. I'm the dad. And I realized it could reverse that it. 

Virginia 26:52

Have you found a support group that's helpful to you?

Jim 26:56

The two support groups I have are taking care of their wives, or their husbands. You know, that's it. And then there's a support group for Aegis medicine. I mean, Aegis people in the facility, and they know they know it, but they're all taking care of their spouses also. So no, there's no support group really, for me. Other than I'm writing a memoir, and as I'm writing the memoir, I'm telling this story. And they're turning out to be a support group for me. I told them that the other day, cause, you know, I'm just sharing with them everything I've been going through. But, but at the same time, they helped me, you know, they call up and say, Jim, do you want to do want to go to a concert with Lynne. So the next thing I know, down at the tractor tavern, at 10:30, in the evening, watching a rock band. And both my daughter and her friend are rockin to the music and I'm trying to figure out when I can go home go get some sleep. But, but I couldn't do that for her so it's an enormous load for me to have them helping. But it's an enormous load for me because they've kind of adopted me as a second father. Jim, how are you doing? Can we have coffee? Can we come over? I'm gonna make you some meatloaf come over and join us for dinner. I'm bringing Lynne over can you sit with her, theyre a huge support

Virginia 28:12  

Lovely, lovely friends,

Jim 28:14  

Lovely friend. Lovely.

Virginia 28:16  

I know we're getting to the time where we have to wrap up this podcast. How has it affected your social life? I know can't, you know your daughter is your main focus. But what has what has become of your social life?

Jim 28:36  

When I lost my wife. You know, I just dealt with that by taking care of Lynne, you know, just switched. I just switched from being the father, the husband taking care of the wife, to the dad taking care. So that that actually is my persona right now I can say I consider myself dad taking care of his daughter. And I'm in hospice now with Lynne, I'm fine by weeks. And I suddenly was afraid what's going to happen? Am I going to deal with my wife’s loss differently? My- so I've started going every way I know how to get some therapy. I've been in therapy, I've shared that with people in the writing. You know, I've joined online dating groups, and ended up I've taken Arthur Murray dance classes, I go to the support group. So I have also a music I walk every day outside. I've learned how to cook different foods for me. I'm doing everything I think I can. I'll let you know how it works out. My therapist said have you ever fallen apart completely Jim? I said no. She said just don't be surprised if you do. So frankly, when I looked up at that void of not having Lynne to care for I was terrified. What is my persona now, what is my identity?

Steve 29:52  

What an incredible journey you're on. And what an amazing person you, you become in order to deal with this. And I think that that's a tribute to you. And also to tribute to any other listener. Sometimes it, it feels like it's impossible to handle all of these things, whether it's for your spouse, or a child, or whatever it might be. But if you kind of still, you know, kind of just hold yourself and make a list and you talk to numerous about that pull in other people to help you. I mean, you went through a series of things to discuss here that I think were really, really helpful. You can't do it all by yourself, even though you have to do most of it by yourself. But you can get help. And I think that that was great. And we can talk a little bit after but terrific interview.

Virginia 30:46  

We just really appreciate your being here with us, Jim. I'm glad that you reach out to others through your website. And we will put the link to that in our show notes at the end and you, you have your blogs and your Facebook and you're working on a memoir. Jim, we wish you all the best. We really do.

Jim 31:07  

Thank you. It's been, I feel really good about what we've been able to share and I hope it's helpful. I appreciate your comments, Steve.

Virginia 31:15  

We appreciate it so much. And thanks to all our listeners for tuning in today. And be sure to check back soon for more important dementia caregiving topics. On Spotlight on Care.

Outro 31:30  

Spotlight on Care is produced by the University of California Irvine, Institute for Memory Impairments and Neurological Disorders. UCI MIND interviews focus on personal caregiving journeys and may not represent the views of UCI MIND. Individuals concerned about cognitive disorders, prevention, or treatment should seek expert diagnosis and care. Please subscribe to the Spotlight on Care podcast wherever you listen. For more information, visit mind.uci.edu