Living with Mixed Dementia & Interacting with Health Professionals

Transcript

• 00:00Hi. I'm Joan Monnen, and
• 00:02I'm from Yale School of
• 00:03Public Health. And our team
• 00:05at Yale recently had a
• 00:07chance to talk to Linda
• 00:08about her experience with mixed
• 00:10dementia
• 00:11and interacting with health care
• 00:13professionals.
• 00:14Linda has been invited to
• 00:16speak for many organizations
• 00:19and is currently volunteering for
• 00:21the national and local chapters
• 00:23of the Alzheimer's Association
• 00:25and the LiveWell Institute in
• 00:27Plantsville, Connecticut.
• 00:29And her goal is to
• 00:30share her experiences
• 00:32with the community and health
• 00:34professionals
• 00:35to improve the lives of
• 00:37people living with dementia
• 00:39and their families.
• 00:40Last time we spoke with
• 00:42Linda, she shared her experience
• 00:45being diagnosed with dementia,
• 00:47which was a negative experience.
• 00:49Importantly, she gave us some
• 00:51advice about how health care
• 00:52professionals
• 00:53could do better.
• 00:54We wanted to invite Linda
• 00:56back because we realized the
• 00:58importance of not only understanding
• 01:01the challenges that people living
• 01:03with dementia
• 01:04and their families are facing,
• 01:06but we also need to
• 01:08better understand
• 01:09the path that leads to
• 01:11resilience
• 01:12after a diagnosis.
• 01:14It's great to have you
• 01:15back, Linda.
• 01:16Thank you. It's great to
• 01:18see you. Yeah. So I'm
• 01:19gonna ask you some more
• 01:21questions.
• 01:22So the first one is,
• 01:23after you received your diagnosis,
• 01:26can you share how you
• 01:27got to a place
• 01:28where you are living well
• 01:30with dementia?
• 01:34I'll try to.
• 01:37Right after I got my
• 01:38diagnosis,
• 01:40everything was very bleak to
• 01:42me,
• 01:42and it was like,
• 01:47I felt very trapped.
• 01:49It was sort of like
• 01:50being in, like, a dark
• 01:52tunnel trying to feel your
• 01:53way out.
• 01:56And so
• 01:59I had to,
• 02:01I had to rely on
• 02:03other people
• 02:05to help me,
• 02:08and,
• 02:11you know, with support
• 02:12and trying to get me
• 02:13to a better place
• 02:15because
• 02:17I realized
• 02:18that
• 02:19I wasn't given an immediate
• 02:21death sentence, and I wanted
• 02:23my life to be as
• 02:24good as it could be.
• 02:27And,
• 02:28and that was my goal,
• 02:30but I didn't quite know
• 02:32how to
• 02:33push away how I was
• 02:34feeling.
• 02:36So,
• 02:40I I mean, I have
• 02:41I have a very good
• 02:42support circle.
• 02:46I have my family,
• 02:49and I have
• 02:50I have some very close
• 02:52friends.
• 02:53And,
• 02:56quite frankly, I don't know
• 02:58that I would be at
• 02:58the point I'm at
• 03:01without
• 03:02without their support.
• 03:08And it's it put me
• 03:10in a position that I'm
• 03:11not used to being in.
• 03:18I always felt very independent,
• 03:26but that's what I had
• 03:27to do.
• 03:29So I,
• 03:33especially
• 03:34in terms of wanting to
• 03:35be there for, my daughter,
• 03:38get myself to a better
• 03:40place, which even though
• 03:42I'm choked up right now,
• 03:44I'm at a much better
• 03:45place.
• 03:47So,
• 03:53along with
• 03:54the people I knew personally,
• 03:58I began going to therapy,
• 04:01and
• 04:02it took a very long
• 04:03time,
• 04:07to
• 04:08I'm constantly,
• 04:09I continue to go
• 04:11because
• 04:12I can't remember things.
• 04:15So,
• 04:18it helped me a lot.
• 04:20And,
• 04:25when I
• 04:26trying to
• 04:28give you a short,
• 04:29you know, a short way
• 04:30to tell
• 04:31k. So
• 04:33I felt that before
• 04:36I was
• 04:37I got help to get
• 04:39to a better place,
• 04:40all I saw was doom
• 04:42and gloom.
• 04:44And with help,
• 04:46I saw that
• 04:48I'm a mom
• 04:50and that I'm still me,
• 04:55and that,
• 04:58if I don't let
• 05:01dementia
• 05:03get the better of me,
• 05:04that for whatever period of
• 05:06time,
• 05:07I can live,
• 05:10a good quality of life,
• 05:12and I can,
• 05:14I can help others?
• 05:18I have a question about
• 05:19the therapist. How were you
• 05:21connected to the therapist? How
• 05:23did you find someone you
• 05:25felt comfortable with?
• 05:29I'm not I don't remember
• 05:30how I first went to
• 05:31him.
• 05:35I must I guess I
• 05:37spoke to somebody that I
• 05:38knew
• 05:40that connected me with him.
• 05:41Mhmm. I don't remember who.
• 05:43Yeah. Is there anything that
• 05:45you appreciate
• 05:47that he does,
• 05:48in therapy
• 05:50that's especially helpful?
• 05:53Yes.
• 05:55Well,
• 05:57first of all,
• 06:02he does it's the type
• 06:04of it's the type of,
• 06:05session where there's conversation,
• 06:09not where I'm just having
• 06:10to talk because
• 06:12that I need feedback.
• 06:13Mhmm. And,
• 06:14I need him to be
• 06:16honest with me,
• 06:18and
• 06:19he does all of that.
• 06:21And and he also,
• 06:24he also
• 06:26helps me to get to
• 06:28a better place,
• 06:30and,
• 06:31if I fall a little,
• 06:33he helps me get back
• 06:34to where I was.
• 06:36But it's the getting to
• 06:37a better place
• 06:38that was,
• 06:40so valuable.
• 06:42Mhmm.
• 06:45So what would you say
• 06:46it it means for you
• 06:48to live well with dementia?
• 06:51Have you thought about what
• 06:52living well might look like
• 06:54for you in the future?
• 06:56Well,
• 06:58this is the future
• 07:00from when I started.
• 07:02So,
• 07:04I'm living in the moment.
• 07:06Okay.
• 07:07I know things will change,
• 07:09but I'm
• 07:12I know how I would
• 07:13like things to be. But
• 07:14I don't concentrate on that,
• 07:17because
• 07:18it's not an upward
• 07:20it's not an upward cycle,
• 07:22and I don't want
• 07:24I don't wanna waste my
• 07:27brain energy
• 07:28on thinking about the future.
• 07:30I mean, I I know
• 07:31what
• 07:32I know about the future,
• 07:34but I don't wanna think
• 07:35about it because that will
• 07:36decrease. That will make the
• 07:37quality of my life
• 07:39much less.
• 07:41So beyond the practical things,
• 07:43I try not to go
• 07:44there, and I try to
• 07:46live in the moment.
• 07:48It's important for me to
• 07:49have
• 07:51positive
• 07:52energy
• 07:53by
• 07:54surrounding myself with
• 07:57positivity
• 07:57and by also doing what
• 08:00I consider positive things.
• 08:03And in my case,
• 08:05what in terms of doing
• 08:06positive things,
• 08:08there's,
• 08:11there's the part where it
• 08:12means a lot to me
• 08:14to be able to help
• 08:15others
• 08:16in any way that I
• 08:17can.
• 08:18And,
• 08:20I think I'm lucky
• 08:22that
• 08:23despite where I'm at
• 08:25in terms of dementia,
• 08:27that I can have a
• 08:29clear,
• 08:30what I hope is a
• 08:31clear conversation
• 08:32with you right now,
• 08:34and pass along
• 08:37what my experience has been
• 08:38like, and hopefully, that will
• 08:40help others.
• 08:43And
• 08:44then I have things
• 08:45that I do,
• 08:47you know, just things that
• 08:48I enjoy doing,
• 08:52Like,
• 08:55I like gardening.
• 08:57I like photography.
• 08:59I'm a I'm a big,
• 09:02movie buff.
• 09:05So
• 09:07it's, strange. Like, I I
• 09:09remember more from a long
• 09:11time ago,
• 09:12so I watch a lot
• 09:13of
• 09:14classics.
• 09:17And,
• 09:19I can watch new things.
• 09:22But,
• 09:24as I'm sitting there, I
• 09:25can enjoy or not like
• 09:27it so much, but I
• 09:28don't I wind up not
• 09:30remembering
• 09:31what the movie is.
• 09:33A book, honestly, I'm okay
• 09:34with that because if it's
• 09:35entertainment for a period of
• 09:37time, then I've been entertained.
• 09:39Mhmm.
• 09:40And,
• 09:41just, you know, different things
• 09:43like that
• 09:45to stimulate my brain Mhmm.
• 09:47And,
• 09:49make me feel like I'm
• 09:50in a better place
• 09:51Mhmm. So I can have
• 09:53as happy a life as
• 09:54possible. And it's much happier,
• 09:58than it was.
• 10:00I'm not saying it's perfect.
• 10:01It's not perfect, and there
• 10:03are things that are troubling,
• 10:05but, you know, I do
• 10:07my best.
• 10:08And,
• 10:10I think with all things
• 10:12considered,
• 10:13I think I'm doing
• 10:15really my best right now.
• 10:18What services from your environment
• 10:20have been especially helpful to
• 10:22you?
• 10:24Well,
• 10:27my psychiatrist
• 10:29has been especially helpful, as
• 10:31I've mentioned,
• 10:33and,
• 10:34I'm not sure
• 10:36about,
• 10:37how I first learned
• 10:39about LiveWell or the Alzheimer's
• 10:41Association.
• 10:43But
• 10:46the,
• 10:47in particular they're both great
• 10:48organizations.
• 10:50I spend more time
• 10:52with LiveWell,
• 10:54and,
• 10:57they've been,
• 10:59beyond
• 11:00helpful
• 11:01to me.
• 11:03They're supportive,
• 11:04and they do many things
• 11:06to bring out the best
• 11:07of me
• 11:09that I can participate in,
• 11:11whether it's
• 11:14whether it's something like a
• 11:16conversation we're having now or
• 11:19the conversations that we have
• 11:21there,
• 11:23or or different activities
• 11:25to participate in.
• 11:27I can offer what I
• 11:28know through my experience,
• 11:30and I can also
• 11:32learn ways
• 11:33to,
• 11:35live as healthy
• 11:37a life as I can
• 11:38right now and as happy
• 11:40a life as I can
• 11:41right now. They've been
• 11:44hugely,
• 11:46helpful to me.
• 11:48And then, you know,
• 11:50privately,
• 11:51I need help.
• 11:53And so, you know,
• 11:55I
• 11:56am getting the help that
• 11:57I need,
• 11:59and,
• 12:00that makes it easier for
• 12:01me to concentrate.
• 12:03It's sort of like
• 12:06like if initially,
• 12:10I had, like my brain
• 12:11was like a large
• 12:13circle
• 12:14of information,
• 12:16different types of information.
• 12:17It's like the circle has
• 12:19gotten much smaller,
• 12:21so I feel like there's
• 12:22limited
• 12:22very limited space
• 12:25for me to
• 12:28think clearly
• 12:29or,
• 12:32I feel like everything is
• 12:33moving in very slow motion.
• 12:36And sometimes
• 12:38I can absorb,
• 12:40you know, what I'm involved
• 12:42in, and sometimes I just
• 12:43can't.
• 12:45But so since this circle
• 12:46is much smaller
• 12:49like, now I'm losing my
• 12:50train of thought.
• 12:52Since the circle is much
• 12:53smaller,
• 12:54I have to,
• 12:56concentrate.
• 12:58There's not a lot of
• 12:59free space,
• 13:01so I have to concentrate
• 13:03on the things that keep
• 13:05me most vital.
• 13:10That kind of leads to
• 13:11my next question, which is,
• 13:13what gives you meaning and
• 13:15purpose
• 13:16these days? Uh-huh.
• 13:23Well,
• 13:26I mean, my background
• 13:28gives me a lot of
• 13:29meaning, personal meaning,
• 13:32in terms of, you know,
• 13:33the family I grew up
• 13:35with,
• 13:36the family I made is
• 13:37all very important to me.
• 13:40So I think that
• 13:41I have some inner strength.
• 13:44I don't know if that's
• 13:45just,
• 13:47yeah, I think that that's
• 13:49how I was raised, to
• 13:51learn how to be resilient.
• 13:54But, also,
• 13:55it's not necessarily,
• 13:58natural process anymore, so I
• 14:00have to think about it
• 14:02more.
• 14:03And,
• 14:05that's where
• 14:06the support that I'm getting
• 14:08from the different services that
• 14:09I've mentioned
• 14:11are so helpful to me
• 14:12to keep me, like, on
• 14:13the right track, so to
• 14:14speak. And I because
• 14:16I'm often going,
• 14:21not not staying focused, and
• 14:23I'm going off on different
• 14:24tangents in my mind
• 14:26that are,
• 14:30not necessarily the best things
• 14:31for me to be focused
• 14:34on. I mean, a very
• 14:35simple little thing.
• 14:37I used to watch the
• 14:38news at night,
• 14:40and I don't think anybody
• 14:42would disagree that there's some
• 14:43pretty disturbing news right now.
• 14:46And I don't I I
• 14:48I don't do that because,
• 14:52everything gets to me more
• 14:54easily,
• 14:55and that would have gotten
• 14:57to me before,
• 14:58but I guess I would
• 14:59have fallen asleep for now.
• 15:02There's no way. It takes
• 15:03me too long to get
• 15:05myself back to,
• 15:08relaxed enough state to be
• 15:10able to go to sleep,
• 15:11and that's probably a lot
• 15:12of people feel that way,
• 15:13but that's just one small
• 15:15example of how to know
• 15:17what things
• 15:19what things are good for
• 15:21you and what things are
• 15:22bad for you and how
• 15:23to readjust,
• 15:26from a totally different life
• 15:28before
• 15:29to now and be accepting,
• 15:31and don't dwell on
• 15:34don't dwell on
• 15:35the used to be's.
• 15:37Focus on
• 15:38the what is now. Focus
• 15:40on the present.
• 15:42And that was just one
• 15:43small example of how I've
• 15:45learned
• 15:46how to
• 15:47sort of change around,
• 15:51my days a little bit
• 15:53and
• 15:56and keep as focused as
• 15:58I can be, which is
• 15:59just it's not for all
• 16:01day.
• 16:04For today,
• 16:05since I I'm speaking to
• 16:06you,
• 16:07I,
• 16:09yesterday, I did nothing.
• 16:12I just rested,
• 16:14and,
• 16:16it was early for this
• 16:18is the morning,
• 16:19and it was early for
• 16:20me to wake up, and
• 16:22that's tough.
• 16:24But I,
• 16:25I got up earlier than
• 16:27I needed to so I
• 16:28could try to be,
• 16:31better here today.
• 16:33So the things that give
• 16:34me meaning and purpose,
• 16:38are
• 16:41I love doing things that
• 16:42I think can help other
• 16:43people.
• 16:45And,
• 16:49being a single mom
• 16:51and
• 16:54being a lawyer
• 16:55all those years
• 16:57didn't give me an opportunity
• 16:58to do as much outside
• 17:01as I might have liked
• 17:02to.
• 17:04But,
• 17:06you know,
• 17:08where I'm at in life
• 17:09now is at a different
• 17:10place
• 17:12and,
• 17:15not necessarily by my choice,
• 17:17but it is what it
• 17:18is. It was not my
• 17:19choice, but
• 17:21it is what it is.
• 17:22So I find I've gotta
• 17:24do things that
• 17:26make me feel
• 17:27purposeful.
• 17:28And so
• 17:30I find that helping others,
• 17:33is very, very rewarding for
• 17:35me.
• 17:37And,
• 17:38also,
• 17:41being able to
• 17:44forgive myself
• 17:46when I'm I'm constantly making
• 17:50mistakes or
• 17:52not operating like I used
• 17:54to operate
• 17:55and and then try to
• 17:57focus on the things
• 17:59that I can do the
• 18:00best at.
• 18:04Was there anything else you'd
• 18:05like to share that you
• 18:07didn't get a chance to
• 18:08say?
• 18:15I want people to know,
• 18:18who
• 18:19have some type of dementia
• 18:21or who are involved
• 18:23with,
• 18:24you know, people that have
• 18:26dementia that,
• 18:28there is hope.
• 18:31We all know the end
• 18:33story,
• 18:35but
• 18:36there's a lot between,
• 18:40getting a diagnosis
• 18:42and the very end story.
• 18:45And
• 18:46it's possible
• 18:48to,
• 18:49lead
• 18:50a meaningful life
• 18:53after you have a diagnosis
• 18:54like this, and
• 18:56you wanna lead as
• 18:59as
• 19:00much of a a high
• 19:02quality that you're able to
• 19:04where you feel like,
• 19:06you know, you're still a
• 19:07person,
• 19:08and you can,
• 19:11your life can have meaning,
• 19:13and,
• 19:16you can,
• 19:19you can have a lot
• 19:20of quality
• 19:22to your life,
• 19:24and,
• 19:26I think that that's what
• 19:29not only people with dementia
• 19:31should
• 19:33get help
• 19:34to focus on, but people
• 19:36surrounded
• 19:38by dementia in any which
• 19:39way.
• 19:43If if they don't feel
• 19:44that way,
• 19:46or they have a lot
• 19:47of questions or whatever it
• 19:49may be, there are resources,
• 19:51and it's very important
• 19:53because it's a very difficult
• 19:56thing to live with.
• 19:57It's very important to get
• 19:59the help that's out there,
• 20:00and also
• 20:03just for me
• 20:04to,
• 20:07to
• 20:09be very, very
• 20:11resilient
• 20:12and strong.
• 20:15So, you know, I can
• 20:16be here talking to you
• 20:17today
• 20:18as opposed
• 20:19to being under my covers
• 20:22and and crying about, you
• 20:24know, what happened. I I
• 20:26I can't change it. I
• 20:28wish it didn't,
• 20:30but it did.
• 20:31And,
• 20:33you know, I don't I
• 20:34don't really I try not
• 20:36to think about every day.
• 20:37Oh my god. This is
• 20:38what this is what I
• 20:39have. This is what I
• 20:40have.
• 20:43I I I know I
• 20:45have this,
• 20:46and,
• 20:48so much more limited than
• 20:49I used to be,
• 20:51but
• 20:54I can have a meaningful
• 20:55life with a lot of
• 20:57positivity,
• 21:00and it can take people
• 21:01a while. Don't give up.
• 21:03Do not give up
• 21:05because,
• 21:07it's it is it's a
• 21:09it's very it's possible.
• 21:11It's possible. So,
• 21:15I understand not being happy
• 21:16about life when there your
• 21:18life when there's no quality
• 21:20of life.
• 21:22But
• 21:23while there's quality,
• 21:25get the help you need,
• 21:29to
• 21:30to learn
• 21:32how to not focus on,
• 21:35what's wrong with you and
• 21:36to learn about the things
• 21:38that are still
• 21:39right with you.
• 21:42Well, thank you so much.
• 21:45You have such a wonderful
• 21:47gift that you're
• 21:49sharing with all of us
• 21:50that's making such a difference.
• 21:52And so I'm really grateful
• 21:54that you came and talked
• 21:56with us about this and
• 21:58such an important message. Thank
• 21:59you so much. Thank you.
• 22:01And I hope it helps
• 22:02to anybody who's listening.
• 22:05Thank you.