Barbara Lucey and William Lucey

00:06 My name is William David Lucy. I am 60 years old. Although. I'll be 61 on September 3rd. Today's date is August 31st. 2008 a location is Springfield, Massachusetts, and I'm here with my sister Barbara.

00:26 My name is Barbra Lucy. I am 55 today's date is August 31st 2008. Where in Springfield, Massachusetts and I'm with my brother Dave.

00:42 Good morning, Barb. Hey, Dave, you know one of the the great events and all of our Lives was the mom's a journey through Alzheimer's and and in particular your life because of the way that you cared for toward the end. I wonder what some of your earliest memories are of mom.

01:04 I have my very earliest memory and it does involve her being in crib face down having a nap.

01:13 Cuz I remember the taste of the sheet in my mouth and hearing the hubbub downstairs of what was our family life going on and wanting desperately to be among people instead of up alone by myself in this bedroom, and she came like a savior and pick me up and held me and just remember, you know, seeing her face over the edge of the

01:41 Crib railing just like this Angel radiating warmth. She just had a warm physical and emotional about her that you're just amazing to be in her presence and to feel that so that's my very first memory of her person. You have a memory of yes. Well, it was cracked open her whole face and she had you no teeth lot of teeth and gums got to see them and we are her whole face would light up her eyes with dance. It was almost in her posture to her smile. I would open up her shoulders and

02:30 And I shan't amazing laugh also, very infectious and funny laugh. That would make you want to laugh to remember her cracking your nose across your face. Do you remember that very well. How did your relationship develop with Mom?

02:48 Well

02:50 She was

02:55 Overworked and I

03:01 Considered my moments alone with her or shall we say not working on something on chores or something to do with the house? I considered those times.

03:14 Really precious being able to go out shopping with her to spend myself having her alone in the house. I remember even being sick sometimes fake sick so I could spend the day at home with her because I was just missing her, you know, it's so many people in the house. It was just hard to get time. So those moments were really important to me and I just felt like we had a special bond and she had the ability to probably make all of her children feel that way. But I feel like I was her favorite and that she would rather sit and talk to me stroke my hands be with me then do anything even though we didn't get to do that very often. She really made me feel bad.

03:59 I have never felt that Mom was my fate her favorite that she was that I was her favorite, but she had that way of putting a tease and making you feel you had her complete attention, which was wonderful. She used to talk about her own mother in a way that made me feel that she saw this direct lineage from her mother, She had adored threw herself to me, especially as I got older she would stroke my hands and say these look just like my mother's hands are beautiful hands and she was playing the piano.

04:37 And I would look at her hands and say what your hands are beautiful and still have stubby fingers. I don't have beautiful hands and cross. My fingers are just as to what she had this way of seeing me in this providential light and of having great expectations for me that she communicated to me and yet never disappointment in me. I never felt like I let her down and sometimes I actually wished that she had been more ambitious for me. But you know, she had that kind of she had that unconditional love where you know, she wanted great things for you. But whatever you did she was happy if you were happy, you know, where where would you have thought she should have pushed you harder.

05:24 I could have used some help in choosing a university that was more suited for me. I could have used a probably.

05:33 With a little push would have gone on to graduate school at it. So it's more in the education area. Also once I move to, California.

05:42 That was a time of real emotional and spiritual growth for me an intellectual to I was reading of a storm remember specifically reading a lot of Sarten de Beauvoir. And I really wanted to talk to my mom for my considered brilliant, you know, because of her language skills in her her history with the state department to end, you know, her her artistic ability. I mean, I just really felt so close to her and that was my first one of my first major disappointment in her that she just

06:21 Didn't she wasn't up to it? And she specifically said that said I'm in awe of you. I don't understand what you're talkin about. I wish you well with these ideas, but I'm worried that you're getting overwrought. You know, she just didn't want to enter this intellectually challenging spiritually challenging territory with me and I had to let that go so I just looked for that with other people after that and that was him. That was a disappointment or another powerful presence in the home. That was Dad. How did Mom's relationship with Dad impact what you just look like now?

07:05 He

07:07 And she are very much in love for most of their lives together. I think and that was powerful presence to be around but I think Mom had to make a lot more compromises and who she was to remain in that relationship and dad. Did he pretty much got his way and he set the tone for our lives and she went along and if she didn't there was hell to pay he was an emotional bully and you know, he would just kind of wear her down until she would agree to do things the way he wanted and that was extremely painful for me. I do feel

07:45 You know, it was a major influence in my life and how I felt about men and family. Yes and went as I got older and you know thought I had some wisdom in and you know some boldness on this subject. I did try to talk to her and I tried to talk to him and to make some kind of a change if I could affect one between them and certainly in their willingness to talk to me about where it's coming from and everything because I had my thoughts about that with dad's kind of rejection by his own mom and everything. But anyway, I I gave up on that too. And I realized I had to form my own ideas about this cuz she would always defend him and he

08:35 Basically said it was none of my business and he didn't want to hear anything more for me about it ever. So that's where I was with it. You mom was able to bring the warm and the smile and especially something you mentioned earlier that with her fingers the music a little bit about Mom and music and she was a mistress of the gesture. She would be able to communicate enormous things through her actions rather than her words when words failed, you know, when she was so overwhelmed by Dad's communicative scale and you know his dominance in that area, even though she was an extremely verbal person to choose a people person and an artistic person. She wasn't great with ideas or data or anyting

09:26 Like a tool but she was extremely good people and love to be around people and she had enormous artistic ability. She played by ear. She played with great feeling and spirit and she was very responsive to her audience so that she could she could hear a song on the radio that I liked and within a day. She was playing it on the piano fluently and I love to be with her sitting at the piano with her or just listening to her and turning the pages of playing Duets singing while she played especially with my favorite thing to do with her.

10:04 Because she had the ability to sing harmony while she was playing by ear a song at any key you wanted so she was like find a key that you could sing too. And then how she almost never sang the lead where she would just find a way to harmonize and make your at least my sad voice sound quite good and she inspired me, you know, I really thought of myself as a musician growing up and having

10:37 That role in Camelot playing Guinevere in Camelot. When I was a senior in high school was kind of the other peak of my musical career, but it never was as important to me ever as it as it was then that was that was within my world that was Pinnacle of achievement at that time with me and with in Holyoke to be able to do that and it was because of her I even wanted to do something like that and she's to bring records home from the library. So as I was growing up and learned every single Musical that existed Rihanna Rodgers and Hammerstein and arm Arlo and Anthony Newley unless they choose to the 60s musicals to everything that existed West Side Story up to the time that I left home. I knew all this musicals because I had heard them and dance around in the furniture listening to them and then she take them back to the library at what musicals did you perform in high school? I forget Camelot and Finian's Rainbow and the, Colorado.

11:36 And down game and

11:41 I think those are the only ones I actually performed and I I I learned a lot of other scores as well if such wonderful memories with her music and in the family song medical shoes in the springs are too many cars for all those years when I was away from home and when I was in college and on after that and I really admired her doing that don't you think it fits your personality? So well that she loved Victor borga. Yeah. She had she had great taste that was both high and low row of buffoonery and I aren't just was irresistible ever. That's how she must she was a complete in that and she would have been

12:26 Should have said very well into a life of of more Leisure. She would have really known how to turn that into happiness. Not just for herself, but for a lot of people instead she married somebody wanted a lot of children and accepted that but I think she had her moment probably with each pregnancy of his Ruth has told me her sister or she would just break down and say I can't do this. I can have another one I can do this and then she'll get through that and she would do it.

12:59 Sherwood what was speaking of her mother egg launch in chaput mom. Love to say that got her first name a client you well, that's why they said in Holyoke in Canada. They probably said a Glenn TV series or just getting old but you surely did they call that thing. I know it ain't talked to you about her mother's dementia, and how what she was feeling about.

13:41 Well the thing I remember the most and I actually remember this happening is that her mom would call in the phone and ask her the same thing over and over maybe 10 times in an hour. Am I coming to see you today? What day is it simple things the weather and you know, of course that really upset mom and I remember her being very upset and harried by having that and course that led to her own declarations about what she would be like when this happened to her which is how she used to talk about it not if but when this happened to her that she wanted to be in the nursing home playing the piano rocking on.

14:27 Porch, but never be to be a burden to anyone, of course.

14:32 Eye disease you are a burden. Although I don't feel that she was a burden but you know, she certainly was not able to have that glorified realization that she imagines of how her and would be I don't know if you remember but at times now and it would start out from her apartment to walk to our house in the middle of summer and you have a code on your mama sent me out to find her because she would get lost now. I was too young and you and then Mom would tell me, you know, I'm going to give you an app to find me as well. I came on a reality. Do you remember when you started to feel that Mom's losing her memory and maybe starting down the path? And how did you feel about that? Well, those were I think it started during the years I was away, you know as a way for 20 years, so

15:26 Start during that time and the first things I remember happening where that I would get. Somebody else's birthday card in my envelope things like that or that there would be mistakes in the address of the envelope with say the wrong State and the rights of code or that kind of thing and then I began to notice that she was not doing should not reading should I drink crossword puzzles anymore and those things that you know, she had done a lot of she was able to still play piano and sing and she was able to do all of your daily activities.

16:09 But I didn't really think that much about it at the time cuz you were way you said you were away for 20 years. When was what was that all about what we're doing?

16:20 I was exploring the world and myself and if I had known that you're at 40, I was going to be coming home.

16:34 Earlier than that, but I was going to be coming home and being around her and Dad and have being so involved in their care. I would have done exactly the same thing. I was always very tied to the family unlike some people that I knew that lived far away from their families, especially if we can't be in California and people who had families back East. I used every vacation to come home almost and I was very in touch with what was happening with all my siblings, you know, their Sports and their injuries and their boyfriends and girlfriends and you know through Mom and Dad more than through them. Yeah and everything, you know how the kids what was happening with you and my nieces and nephews. I felt very tired, but I had a strong urge to explore the world and to live more wildly that I felt I could do within close proximity to my parents without hurting them.

17:32 I wanted to experiment with life and I did you know, what drugs and relationships and risky Everest Career where I was freelancing just going from job to job, you know and living in a very fast world of Film Production with the lot of you know,

17:52 Moral challenges and I enjoyed that, like putting myself up against that and I liked having friends who were really strong independent and with strong wild streaks as well and I liked that world. So there's nothing about that you do differently now and yet you did decide to come home first to New York and as I was in New York going away on location, I realize more and more when I would come home it was harder to recreate my life there and have friendships that endured have relationships with men that endured and I found myself really wanting those things. And when I would leave New York prior to that I would couldn't wait to get back like if I came to Massachusetts to visit mom and dad I wouldn't be able to wait to get back to New York and then it started to turn like a nano Pond just started to turn over and once it was turned it completely changed when I would be out in the country.

18:52 Can't wait to get back to the country by Eminem. I return to New York. I couldn't wait. I I started to notice there wasn't enough green for me that the pace was too fast that I start I got pickpocketed twice had lost my New York armor and my Edge and it just wasn't the place for me anymore. And that happened around the time that my mom and dad started to need you could see what was happening. We need more care. So

19:19 Fast forward to a lot of other things changing but it coincide with my life desire to be around mom for the ends of her life and dad to do end and to slow my life down as well. And how did you develop and maintain relationship both with Mom and Dad and Mom in particular as she started her or else? I'm her journey.

19:45 Well in the beginning of for much of the time Dad was really an impediment to the kind of care that I wanted to give her.

19:53 I wanted her to be able to go to the daycare once in awhile and receive other kinds of stimulation. I wanted him to get a break from the care for her so that it wouldn't be wearing him down so much. I wanted them to have help in the house and he resisted all that until it really became necessary. But the good thing was he started to let me into financially helping him manage things and that was a huge privilege and his mind was right and you love I would have but I always been home and then really didn't return to a lot this past year. I've been gone for over 10 years in the South so that you that that was always interesting and sometimes bizarre to me all those roles shifted that I'm not sure anybody could have worked with Dad finally get those things on the table better than

20:53 And you did and I'm particularly interested in how you manage to to get close to Mom and and what you felt you did which enhanced her life through Alzheimers and maybe if there were things that you wished you had done both for yourself and for for her.

21:14 Well

21:16 Mom is very physical person and she lived in the present and that surgery very well with her Alzheimer's and those are the things that I

21:25 Pakistan

21:27 A lot of hugging a lot of stroking

21:31 I got her set up with a masseuse and she started to get that that really helped her. She was really touch was.

21:40 The last thing to go with her that Isaiah is a means of communication and music on music without the last thing but in the beginning those are the things I focused on because she was able to sing lyrics to songs long after she couldn't complete a sentence without music. So being able to play she could play even quite a long time, but when she even couldn't play anymore if I played she could sing lyrics to song she knew well, so we did a lot of that and I got her a lot of tapes to musicals that you can play right at the kitchen table and

22:21 You know, I I care a lot about her her physical self. I tried to make sure she was really comfortable. She was well-groomed and that was a big fight because that it always been so important to her every morning even with seven children. She'd have her bath and one of the things I remember about her besides her warmth without but she always smelled she always had delicious lavender and other scents about her and so I tried to keep up with that and that's actually where Dory was really helpful when she started coming in to keep her on that routine everyday Lee bath with which was so important to her.

23:02 Mom was happy just sitting with you and having you one of my big challenges in the beginning was to get Dad to let go of reality. It didn't matter. What day it was it only matters what they mom thought it was and if she was comfortable thinking, it's Sunday when it's really Thursday let go and let her think it's Sunday. It really doesn't matter or if she thinks she's hasn't seen me in a week, but I was there yesterday. That's also fine. Just like a reality of the unimportant details and be in the moment with her and she of course in the early stages knew what was happening to her and had fears around it. And those are some of the hardest times cuz she would

23:43 I don't want you to have that awareness and I could see the fear in her eyes.

23:50 And I would try to console her because her faith in God was strong but she also had this very dark fatalistic side. So superstitious side and I would just try to stay that, you know, as she said with her children that say God would never send this to you. If he didn't think you could handle it you can do this, you know, this is going to be okay and get through it and done.

24:17 Or I'd help you know, he'll Prevail against it if that's what you needed that day and say, you know what cuz she was afraid. You know, she took it as an ego thing sometimes what's wrong with me. I can't do this. She would forget that she had and I would just tell her.

24:32 It's the disease something's happening in your brain. It's the disease. That's not your fault.

24:40 But you're not doing anything wrong. It's not your fault, you know, just say that over and over again to her which sometimes really hard cuz you know, Dad would push her to try to remember better and to you know it but he he eventually learned and he he needed as much or more patience to go through those stages. You know, it really drove on vast wealth of compassion that I haven't exercised much in the last 20 years. I've been taking care of myself and tuning into my family when it suited me and this was one of my time without having children of my own.

25:20 To be

25:23 For other people what they needed of me.

25:26 I make my decisions based on somebody else's needs not my own which you know you having kids at 19 years you spent most of your adult life doing that. I hadn't and this was my chance to do that and to

25:40 You know kind of marry my own.

25:44 Desires for my Spiritual Development with this need that was out there and I and my family we can imagine it either Mom or Dad could have gotten better care than what you did for them and arrange for them as pretty impatient, you know his dad at times as I said, he was a big big impediment in the beginning and luckily Mark used to come with me some of the times I would go there and he would sit with Dad and listen to his stories, you know that I had heard 50 times patiently cuz he'd only heard them five times and see all the good things in him. And when I was ready to go out and slam the door in anger or frustration Mark was sometimes able to make a breakthrough with him because he was kind of detached, you know, and so that was helpful to about Dad not being mobile at some point. She couldn't follow you out the car and talk for another hour. You did specialize in having conversations while you were standing in the doorway halfway out.

26:44 And that's what Mark would Marvel at that I would in the middle of this conversation after it said four times. I was leaving. I just shut the door and go cuz it was the only way to get out.

26:58 How would you gauge the impact of that experience on on your life?

27:03 Both in the context of Alzheimer's for sure up in general would impact that experience that caretaking experience working through all that with with Mom. And of course they had how did that I was that resonate now.

27:23 Well

27:27 Estes is really hard.

27:33 And having gotten through it.

27:39 In a way that

27:41 I think through their needs and nourished me and wasn't to exclusionary towards my siblings, which is something I worry about a lot. I mean, I think I watched the tightrope in a way.

27:57 And I'm very proud of it.

28:01 And should be

28:03 Well, it's never just one thing that thing it was it was a sustained effort of body mind and soul over a long. Of time and Mark will tell you there were many many days.

28:17 I came home and just collapsed. I never knew when he went to the nursing home what crisis there would be Too Faced doctors or insensitive helpers are administrators. I would have to negotiate with and or just an emotional landmine waiting for me and even it could be nothing obvious to anyone else, but just something that would turn in me when I saw her and remembering how she used to be and how diminished she became and you know, I've been fine with it the last visit David lay me low. So through all that darkness and pain what what gave you Joy? What sustains you?

29:02 Well

29:04 She became like my baby.

29:07 She became

29:10 I would consult myself.

29:17 With her losses, I would tell myself.

29:25 But she was as helpless and innocent.

29:30 Everything that was going on with her.

29:33 I went was demanding of me as I said as an insult.

29:39 When she had

29:41 Give me all she had.

29:45 So I wanted to give it to her.

29:48 And she was in this kind of reverse development has skill after skill child from her.

29:59 And I just had to rise to the occasion I had to because she wasn't playing Bliss and I never had any resentment towards it was impossible. I mean, do you have a choice of baby who needs you to feed it and change the diaper and they help you learn how to walk. You know, it was just going in the opposite direction. She did live for a quite a long time and in the end stages tennessee-bound for about 2 and 1/2 years.

30:33 So she could only be in her chair supported at at unit proper angles.

30:39 And she had also to be fed.

30:43 It was difficult to feed her and in the last year.

30:48 But she did eat didn't ya the last 2 years once removed her?

30:54 2 mm

30:56 Hampshire care from the specialized on Alzheimer's facility from Palmer House

31:03 For about the first three days they can figure out how to feed her.

31:06 And

31:08 Just as I arrange to have someone come for the other place they were so marvelous to her that so the thing, you know, I wasn't doing this by myself. I had such good models ride to care for her how to manage my emotions people at Palmer House were amazing their nurses there that

31:25 You know there are days. I owed my emotional well-being to them and Mom certainly her Comfort to them and if you try anyway afterwards, and I don't mean to not mention her butt and she was having a lot to do with what was going on with Mom. I was not doing this by myself and other siblings were doing other things, you know, some Jim said what can I do? What can I do during visiting I said go take care of their funerals. I can't face it and he did and you know for all that time that you and Beverly were bringing food and you were having those daily visits and ask if and Bob would come in and do certain things and Kathleen. The best thing she could do is to remove yourself from the situations that she disagreed with our decisions about her care if she did that

32:14 But Joanne really focused on Mom's comfort her clothing the environment of her room.

32:23 Music other things that would try to really lift her.

32:28 What is feeding issue enormous and I did almost all the negotiating with the caregivers and they were ready to give up on her and say she had to go somewhere and get an IV. And I said no, there's a whole Cadre of people who've been able to feed her. We just have to teach some people out here at so for 2 days. So and I fed her until they can figure it out and then we tried to end and we weren't good at it because we hadn't had the day after day practice that the People Pumped RSS so

33:01 What I would do differently I guess.

33:05 If we had more money, I would have kept her home the whole time.

33:11 And had a lot of help.

33:14 But I actually think it wouldn't have been that Superior for her because she liked having people around my friend Maureen Haugen 9 siblings one said your mom likes to hear people and noise. She's heard people annoy since she was married. She's used to it environment with a lot of people coming and going and I thought about that and you know that seemed right to me. So I really wouldn't have done that many things differently with her.

33:50 I know we all think about that the disease itchy went through and then we think about ourselves as all right as in hereditary situation. I'm sure you thought about that. Would you do anything differently with your life if you knew that you were going to have Alzheimer's?

34:12 Well in a few years I'll face the long-term care decision, which I set for myself in 58. Do I get long-term care insurance or not? And how much can I like for you to go stay with Mark for what? I want my life to be like then.

34:27 If that happens, but I'm pretty much living like I know this is going to happen. The only thing I would probably do more to spend a lot more time on my writing try to get things ready for publishing even if they're not published know that I have like

34:42 I hope collection of finished works, right and to get kind of lazy at the end once I've expressed myself and it may be gone to a second draft. I don't do that extra push to really finish things, but I would like to leave that kind of Legacy. I have been tested.

35:00 Neurologically and so I'm not a prepared if I start to feel myself slip to get another test into comparisons, but I'm counting on a cure and I'm counting on

35:15 I don't know. I'm kind of unrealistic sense of vigor in a

35:23 Enduring so I'm in a little bit of denial, but I

35:29 I have lots of friends who talk about how they love to travel the world. Once I retire I did all that what I want now is family and

35:39 My love with my husband and my writing and to do good work with my career in order to be feel like I am doing but to continue doing good work and have some kind of stability in old age security.

35:59 That's kind of why I wouldn't really do much different.

36:03 If we could do Alzheimer's at least for the moment is as part of mom's life and part of our life together with her and perhaps being part, but not the defining moment of any of our Lives of you talked earlier about having a special relationship with

36:25 What do you take from that now just going to take a deep breath and reflect, you know, certainly it's it's tinged with the Alzheimer's experience. But what do you take from that relationship that you for you for you find very critical to

36:46 Grace

36:50 In what sense is social Grace and

36:56 Spiritual Grace

36:59 And

37:02 Enthusiasm. I mean, I do feel that I am like her in certain ways of

37:10 I think I'm actually more of an optimist even then. She was she she went back and forth a lot and it's really great helps me temper this order driven part of my personality. That's more like Dad.

37:25 She comes to me.

37:29 Only a couple times and then 10 sort of physical way, but I feel that you know, she's in me and she guides me with a very strong.

37:43 Defensive forgiveness

37:47 She was really truly able to forgive people almost anything. I'm able to do that, too.

38:02 End

38:07 I guess there's just a certain.

38:10 Quality of

38:14 Brio you know that she had lightness of spirit. That's what I try to carry with me.

38:24 Thank you.

38:27 Can you tell what your mom's name is Lucille and I always called her Lucille once she got seriously into the disease because I didn't want her to have to think of yourself with more than one name and dad called her the seal. So I called you this the other nurses with sometimes I didn't want you calling your mother by her first name, but I always called her Lucille so that cuz she wasn't a mom anymore. She was just sale and that's

38:59 How to counter Lucille Olive Lucy