June 25, 2024 • 29 mins
Virginia rejoins Steve in this concluding 2 part series on caregiving strategies. In this episode, they provide insights into activities and products that can be utilized to enhance daily living and simplify routine tasks. Tune in for valuable information that aims to elevate the day-to-day experience for both caregivers and those living with Alzheimer’s and other forms of dementia.
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Episode Transcript
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Steve (00:06):
From the University of California, Irvine, this is UCI
MIND's, Spotlight On Care, thepodcast where we share stories,
experiences, tips and advice oncaring for loved ones affected
by Alzheimer's and otherdementias.
Hello, and welcome to anotheredition of Spotlight on Care.
(00:27):
And this is kind of acontinuation of our really
exciting part one of the tipsfrom Gini and Steve and sorry,
Virginia and Steve. In anyevent, we were really happy with
our first edition and we've gota lot more to talk about. So
here we go. So Virginia, let'stalk about kind of that whole
issue about distraction. Andwhen some things that you found
(00:50):
that are ways to make it fun andeasy to make a distraction
happen,
Virginia (00:54):
Definitely, there are things that can make life easier
for both the caregiver and theperson with dementia. So why not
list a few of those things here?
I remember, my mom would sitthere and pick at her nails, she
would pick at her fingers pickedat her nails. And what came to
(01:14):
mind was, she needed somethingto do with her hands to make her
happy. They have now thesefabulous; they call them fidget
blankets. It is a small blanketthat you can put it on a table
top you can put it on your lap,and they have zippers and
buttons and pockets and thingsthey can fiddle with, which
(01:40):
would have been fabulous for mymom, would have been. And I've
talked to people who have usedthem, and they they love them;
not for long, but for a fewminutes, they sit there and
their hands are busy. And it'sgreat-- a squishy ball, they
sell these rubber balls, you'veseen them, CVS has them. And you
can squeeze the ball in yourhand and it can relieve stress,
(02:04):
it can make them feel better.
Another activity, which weenjoyed was, I would collect my
old costume jewelry, rings,earrings, necklaces, and I'd put
them in a pile and then put thatin front of your loved one,
(02:28):
along with a muffin cup becausethey can sort--they like to
sort-- you know the variousthings, a muffin cup or other
little cups that they can justseparate the items in. Napkin
folding. Just put a pile ofcloth napkins that you just got
out of the dryer and put that infront of them and a woman will
(02:50):
be very happy folding napkinsand helps.
Steve (02:54):
What about I think you've talked before about fake pets?
What about what about that?
Virginia (03:00):
Fake pets are wonderful. We tried real pets
for a while with my mom and itwas kind of, it was not good. We
had purchased two kitty cats forher because my brilliant idea, I
thought, pets fabulous. And wewalked into her room at assisted
living one time and said (03:20):
"Where are your cats?" And she said,
"What cats?" That's how we knewthis was not a good idea. They
sell fake pets, robotic dogs,robotic cats. They're wonderful.
They wag their tails, theyblink. They purr. They make
(03:44):
sounds and people, I thinkespecially women who love to
just feel like they're nurturingsomething, love to sit there
with a fuzzy, wonderful, fakepet in their laps. Doesn't
matter that it's fake. Doesn'tmatter. Fish, they sell fake
fish that will swim in anaquarium. Beautiful, they're
(04:08):
beautiful things. They swimaround, and they're soothing and
calming and mesmerizing.
Steve (04:17):
I might talk- just my experience with pets was a
little different. But I thinkVirginia is right. There's a
point in time where the petbecomes more of a problem, but
for the first stages of havingPatty at home, having a dog was
like a godsend because it was anactivity. It happened you know
the walks happened, you know thefeeding, making sure water,
(04:38):
taking them you know make surethey took care of their
business, all of that stuff. Andthen even the transition into
the community worked reallywell. And then there was a point
where Patty kind of forgot, justlike Virginia's mom did, and
then it was she would carry thedog upside down and it was you
know was not healthy for thedog. So the dog came home but I
think the whole idea of pets andsomething that can love them or
(05:01):
feel like it loves them. Even ifit's a fake pet, it's really a
great idea.
Virginia (05:05):
When she was in assisted living, they had
visiting people with their petsand their dogs and, and cats and
they would bring them and be inthe lobby area. And it was just
a lifesaver, was just alifesaver.
Steve (05:22):
Okay, well, what about therapy dolls?
Virginia (05:25):
Same concept, same concept, these dolls. They look
real, they feel real. They'vemade them with soft skin. They
can change their clothes, ifthey want to put on a new little
dress on a doll, especially I'mnot talking a lot about men, I
don't think but women, they justthey're, they love these dolls
(05:51):
and can sit there for hours witha doll on their lap. And there
was something about it that Idon't know, it took me a while
to get used to that whole ideabecause it was fake. And it was
something that baby you know,like a five year old usually
does. But you know what? Madeher happy!
Steve (06:07):
Yeah maybe sorry, maybe.
Maybe. For guys, it's, you know,some sort of other anatomic type
doll. You know, like, you know,old toy soldiers, whatever might
have been a hobby before for aguy for for your dad.
Virginia (06:24):
Cars? What about small metal cars, then? Some people
are car collectors. Yeah. Justanything that can kind of
distract them. And who wantssomebody sitting around watching
TV all day?
Steve (06:39):
Correct. So let's let's move on. That's a great section.
Let's talk about clothingissues. You mentioned several
suggestions here. I think we canprobably go through them
quickly. But go ahead and getstarted.
Virginia (06:50):
Yes, I remember when I discovered elastic waist pants
for my mom. Walmart has awonderful selection. They can.
They're not just sweats. You canget regular lovely fabric for
women. Men, they have, of coursesweats that are just elastic
waist. But they also havethinner fabric. So you can't
(07:14):
always think well, they'll betoo hot. A lot anything to
eliminate buttons and zippersjust makes life easier for both
the caregiver and the personwith dementia. Few or no buttons
that can help especially andtops too. Pull over shirts --a
shirt that has maybe a button atthe top. Anything to make life
(07:38):
easier. Getting clothes, on andoff, will simplify life.
Steve (07:44):
Yeah, I think that's really important. I was thinking
about one of the issues,especially as you go through
this journey, things change.
Sizes change. Oh, yes,surprisingly, Patty put on
weight when she went intocommunity and I had to get
bigger sizes the first time I'veever remember her adding that
much weight. And then of course,the opposite. The opposite
(08:09):
happened as we went along. Andthen we had to get smaller sizes
again. So just kind of stayingon top of having enough clothes
and making sure you've got theright sizes. What about shoes?
And what about nighttime?
Virginia (08:22):
Well, you know, they're making wonderful slip-in
sneakers now. Skechers makes awonderful pair of shoes, that no
ties, nothing complicated. Theyget to the point, unfortunately,
where they really can't tietheir shoes. So to be able to
slip into shoes that are secureand safe for walking is a
(08:45):
lifesaver. Night gowns that openin the back. When you get to the
point where there's incontinenceand there needs to be some kind
of a change in the middle of thenight. Perhaps not always. But
sometimes. And if the night gownopens in the back, that
eliminates difficulties ofpulling something down. Nice
(09:07):
shirts, don't they sell nightshirts for men? Yeah, I didn't
have that problem because Iwasn't taking care of a man but
my mom, I remember hearing thatif you get them a night gown
that opens in the back, lifebecomes simpler. Incontinence
products have improved. I didnotice that our assisted living
(09:28):
facilities, incontinenceproducts were not very good. So
I bought them separately at homemedical supply. But now
pharmacies have them all overeverywhere. They're pull up back
like underwear. And they'rethey're much easier for changes
and for the person to manage to.
Steve (09:49):
That's great. I think those things I remember all of a
sudden it started to happen andI as a guy, maybe I was out of
my element. And I have changed afew diapers in my lifetime but
just getting used to that wholeidea. And, yeah, that's diapers
are much better than they were10 years ago.
Virginia (10:07):
Much better than they were 10 years ago.
Steve (10:09):
Alright, let's go back and talk a little bit more about
the bathroom and water. And youyou've talked about this being a
scary place. Why don't youexpand on that?
Virginia (10:19):
It's not to say that everyone with dementia will
develop a fear of water, butit's very common. My mom did for
a while and didn't last. But fora while she was afraid to death
of water. Getting someone toshower when that happens is not
easy. There are some tricks. Ithink the biggest trick is to
(10:40):
make the bathroom a verywelcoming, warm, friendly place
to be. You don't leave the waterrunning when they're brushing
their teeth. But again, we'vetalked about the importance of
music, put a little music in thebathroom, but give them their
favorite songs when they're inthe bathroom either for
(11:02):
showering, bathing or going tothe bathroom. We had mentioned
before the importance ofaromatherapy, get that nice
smell going on in the bathroomthat can that can work wonders.
It sounds counterintuitive, buta dish of treats. My mom was a
candy eater. A dish of treats.
If they knew there's a dish oftreats in the bathroom, they
(11:25):
might be more willing to go inthere. Towel warmers, you can
get them anywhere now towelwarmers are wonderful. And
Shower chairs. If they'resitting in the shower on a
chair, they might want a towelaround their upper body for
warmth and just modesty they canthey can be very very nice a
(11:47):
plain towels you if you don'thave a towel warmer but a towel
for them to hold on to can help.
Sometimes you're just going tohave to forget showering for a
while and they sell largetoweletes at the pharmacies now.
For bathing. You just wash themthat way and and you just do
(12:11):
what you can while they havethis fear of water, and then
over time, it changes back, itchanges back. They have visors
so that if you're going to washtheir hair, the soap won't get
in their eyes. Children'sflavored toothpaste. Mom was
afraid of water didn't want tobrush her teeth. We figured out
(12:31):
that a children's flavoredtoothpaste with a spit basin.
She didn't even have to go intothe bathroom to brush her teeth.
We had a cup of water and wewould brush her teeth with this
little cherry flavored you knowbubble gum flavored toothpaste.
Give her some water and shewould spit into the bowl. That
(12:54):
worked for a while.
Steve (12:55):
So question for you, Virginia. So with this
children's flavored toothpaste?
Did you try it yourself?
Virginia (13:06):
I don't like cherry, I don't like bubblegum.
Steve (13:12):
Well, no, it makes sense.
Makes sense.
Virginia (13:14):
The first time, I tried it with her. Yeah, isn't
that funny? And then shampooinggot to be kind of a problem. And
this tip is basically forreally, really toward the end
stage. If you really want towash their hair. There are
sprays that you can get at thepharmacy that freshen hair,
(13:36):
that's fine. But if you reallywant to wash it with water, they
have something called an easyshampoo. And it's actually you
blow it up, it's rubber you blowit up, and you can put it or you
can put their you know, they'relying down in the bed and you
put their head in the kind ofrests their neck against the
basin and with water andshampoo, you can wash their
(13:59):
hair. It's not easy, but itmight be a solution that you
could try if you're reallydetermined to get the hair
washed.
Steve (14:06):
What about dry shampoo?
So did you try that?
Virginia (14:08):
Yeah, those are good.
Those are good. I always feelbetter when they're using water
and soap but yeah, but those canbe those can be fine until
they're back, able to shower andget their hair washed. I
actually hired a company onetime, a transport company
because mom was in a wheelchair,towards the end she was in a
(14:31):
wheelchair. And I hired atransport company to take her to
my hair salon. Because they hada very nice setup where I knew
she'd be comfortable. Theywashed her hair, they colored it
and curled it. I couldn't dothat. It's expensive. I couldn't
do that a lot. But you knowwhat? I think it was before a
holiday one time and I thoughtthat was a treat for her and
(14:53):
they were lovely people theyeasily put her into the back of
this van with her wheelchair.
She was in her wheelchair andthey secured it and we got to
the hair salon.
Steve (15:05):
Alright, let's see, let's move on to eating, my favorite
topic.
Virginia (15:13):
That's a topic that can get kind of rough for a
while.
Steve (15:16):
Yeah. Tell your first story about your mom with a
hamburger.
Virginia (15:20):
Oh yeah, I disagreed with her on something one day,
and she picked up her hamburger,and she threw it at me. This is
my mom, my sweet mom whowouldn't hurt a fly. I had
hamburger all over the front ofme. So, you know, eating becomes
more difficult because dexterityisn't good. They're not able to
(15:46):
do what they used to do. Butthey now have what they call
adaptive utensils. They havelarge handled spoons, large
handled forks, they have scoopedbowls. So in the bowl, you put
their food, and they can scoopit with their large utensil, and
(16:11):
it doesn't roll off a plate. Ifound those at the at home
medical supply store. You canfind them online too-- adaptive
utensils. Swallowing, toward theend, especially can become a
problem. And they have foodthickeners. So if you want to
serve them soup, you thickin it,and they can swallow it more
(16:34):
easily. Swallowing. I don't knowwhat the deal is. But it becomes
it can become difficult. And thethickeners are very common at
assisted living facilities. Alot of times they'll thicken
their food, they'll thickentheir liquids and it goes down
easier.
Steve (16:50):
What about appetite issues?
Virginia (16:52):
They can go through phases where they have lack of
appetite, it's really common.
And you're thinking, Oh, they'renot getting any nutrition? Oh,
what are we going to do? Mom gota prescription for it's called
Megace. And I think they havemany over the counter products
now, that will increaseappetite. And it worked. For
(17:12):
mom, it worked. She didn'talways have to be on it. But
when I noticed several dayswould go by we would get you
know, liquid protein drinks andstuff like that. But I noticed
that she just she was nothungry. She didn't want to eat.
And then you have to think abouta subject that I talked about in
in the first episode. It couldbe a sore tooth, you don't know,
(17:34):
because they can't really tellyou. But sometimes they just
naturally go through a lack ofappetite, and Megace can help or
a similar product.
Steve (17:46):
And then what about the-- It's always interesting to me
about when you talked aboutdolls and this whole evolution
of returning back to theirchildhood and when I saw bibs, I
thought about that. And yeah,just practical. Really.
Virginia (18:00):
It's just practical.
My only advice there is theysell adult bibs, but don't call
it a bib in front of your lovedone. I don't want anybody
telling me I have to put a bibon. Call it, for a woman, call
it an apron. "Let's put yourapron on." For a man. "Let's put
your big napkin on." Don't youthink that'd be better? Steve?
Steve (18:23):
I do. I do. I think that's very smart. Just a little
subtle difference. And once theyget used to the idea, and I've,
of course had many Italianfriends. And of course it's
almost habit for an Italian guywhen he's got spaghetti. He's
gonna put a napkin around hisneck and take care of it. Yeah,
Virginia (18:43):
I took mom out for a we went to a Vietnamese
restaurant and almost everythingthey had had noodles. And oh my
gosh, she wasn't miserable. Butshe couldn't really eat a whole
lot because noodles just werenot making it to her mouth. So
that was my fault. Not a goodchoice of restaurants.
Steve (19:02):
Well, that's an interesting topic. I was gonna
we're gonna move into mobility.
And I thought maybe we mightinsert something here. And you
kind of, it's a great segue.
What about eating out? Becausewe were talking about eating and
eating out and then adding tothat, visits back home once once
they're in a community. So let'stalk about kind of taking them
(19:23):
out for a meal, what some ofyour tips might be there.
Virginia (19:26):
You know, every time we took mom out to a restaurant,
she would look at me and she'dsay, I'll have what you're
having. And I thought, Okay, nowI'll try to order something that
I know she'll enjoy. But she wasintimidated by reading the menu.
It was overwhelming to her whenit was a big menu, which I
totally get. So I noticed her alot saying I'll have what you're
(19:49):
having. Another tip. You canhave little business card size
messages printed that say (19:55):
"The loved one with me has as
dementia, please understand",and you hand it to the waiter or
the waitress, that way they knowwhat's going on. And they're
kind, for the most part, theywere kind. So that's my
restaurant tip.
Steve (20:13):
Yeah, and a couple of things I would add there. One
is, you know, happy hour is agood time to go, as long as it's
not crowded. I think sometimesrestaurants in you know, in
busy, busy times, and of course,eating early becomes a pattern.
And I think you raised a reallygood point, it's almost, if you
know what to order, and you'regoing to a place, they're not
going to necessarily rememberthat this is their favorite
(20:35):
place, they're just going toremember the fact that you're
taking them out and you're goingto eat. And I think this is
something that kind of workswhen you're dealing with a
community. The other thing,community living, it's a way to
get a break, and you feel likeyou're doing something extra
special for them, you just haveto be careful about returning.
And sometimes that's an issue,but I experienced something
(20:56):
about bathrooms, and going outto dinner, or a meal, right? You
know, here I am a guy and I havea mom and a wife, sorry, in this
case, and it was like, whoa. Andthe first couple of times, I
literally had to stand outsidethe women's bathroom and talk to
ladies who are coming out sayingis my mother's still in there?
(21:17):
And then eventually, often awoman would say, "Well, let me
go back and check for you." Andsome sometimes they would help
her out. And then I finally kindof realized, it's like taking my
child into the bathroom. And Iwent into the men's bathroom,
and went into the stall. Andthat's what we did. You know, we
took care of things that way. Somaybe for guys, it's just not
second nature. But I did gothrough that experience.
Virginia (21:39):
You know, yes, a lot of times now they have, you
know, a restroom that can beused by either male or female,
which is really nice. But youand I did not have that with our
loved ones.
Steve (21:52):
Yeah, I think that's a very good point. Anyway, just a
couple of things there. Becausewe run into those. I wanted to
add something here about visitsto the home just an experience
that I had. My first few monthswith Patty in the community were
difficult, just because shewould constantly bring up
returning to home, even thoughwhen I wasn't there, she never
(22:15):
brought it up. But she would seeme and that would so you know,
do not go? Well no, you gobecause you want to be with
them. But I often always had tosay, Well, remember, the doctor
said you should be here becausethis is a better place for you
to get treatment for, you know,the problems that you have. And
that would give me a break tomove on.
Virginia (22:33):
You don't want to look at them and say, "You are home,"
you know, and it's a community.
That doesn't work.
Steve (22:40):
Yeah, I've heard people say in our men's group that they
tried that and it worked. Butreally, yeah, and again, every
journey is different. So I madethe mistake of bringing Patty
home a couple of times. Andbecause she kept asking about
she wanted to see her flowers,she wanted to see the waterfall.
She wanted to see this or thatand it was like, okay, and two
(23:02):
times one I brought her home andwe went outside and was a
beautiful sunny day. And shefell asleep on the on the divan
outside and it was lovely. Andthen she woke up and it was
like, Okay, time to go. And boy,she was not happy about going
back to the community. So Ithink you have to be careful
there. And again, you're goingto run into that moment in time
(23:24):
when you just can't go anymore.
And that's when I made thesecond mistake. We got set up
for Christmas. And the best timeof the year for Patty was
Christmas. She had all theseDickens village things and
lights and her trees were alwaysjust so amazing. And her
daughter was with us -- ourdaughter was with us. And so we
we decked out the house and webrought her home, and she was
(23:46):
overwhelmed by it. Now granted,this was somewhat later in the
process. But you know, you thinkit's a good idea. But reality is
whether is that going to be sucha dramatic change for them that
it's not going to be goodexperience. And it wasn't
exactly and was really sad wassad for me. And it was really
sad for my kids. So anyway, Ijust pass on those things in
(24:07):
terms of using judgment. Thankyou. Yeah. All right, let's it
kind of leads into talking aboutmobility. Why don't you talk
about some of these great ideasabout mobility.
Virginia (24:18):
Well, one really handy dandy thing that you can get for
your car is called a swivel carseat. And it's just a pad that
you put on the seat wherethey're going to sit and then
when they go to get out. Theyjust swivel it's just easier.
They also have handles you canattach to you know the the top
(24:40):
of the window area to help themget out of a car but after a
while it gets kind of difficultto get in and out of a car.
Anyway swivel car seat. In herlittle living area at assisted
living, we purchased what theycall a lift chair. It looks like
a lazy boy lounger chair, butit's motorized, and when you
(25:04):
push the button, it lifts andpushes them or tilts them
forward to get out of the chair.
My mom was not a big person, butstill getting in and out of a
chair was not easy. And they canbe rented or they can be
purchased. So I thought that wasa good idea. A heavy duty, it's
what they call a heavy duty gaitbelt, you put this belt around
(25:27):
this -- probably two to threeinches wide, and you know, it's
pretty heavy duty and you put iton them and you can lift them
yourself, hopefully not gettinginjured, but you can lift them
out of a chair. And we did useone of those quite often. And
then when they're walking, itsteadies them, you can kind of
(25:47):
hold on to the belt when you'rewalking. And they can be they
can feel a little more securewhen they're walking. There's
something called a Hoyer liftsling. Now this is really at the
end, but not so much at the endwhere they don't enjoy sitting
near a window, watching theyard, or whatever. But getting
(26:08):
out of a bed can become verydifficult. And this thing looks
scary, but it works. It's calleda Hoyer lift sling, and they can
be purchased or rented. And theyhave a series of straps that
actually lifts them up and outof a bed. And I think most
assisted living places do youhave them now.
Steve (26:31):
Yes, we had one. And Patty used it towards the end.
All right, let's, let's end uphere with your description of
fun accessories on walkers.
Virginia (26:44):
My mom loved this little stuffed bear. And on the
front of her walker, we had alittle cart, you know, I don't
know, a little basket, I guessit was a wire basket. And we put
this stuffed animal in thatbasket. She loved it. She loved
it-- wherever she walked aroundwith her walker, she had her
little stuffed bear with her.
And it sounds ridiculous. Butyou know what? She loved that
(27:06):
thing. Eventually they'll be ina wheelchair, if they make it
long enough. But with a walker,a cup holder, you know, they
have a million things you canattach to a walker now.
Steve (27:19):
Yeah, and I just think it's a whole idea. It's not just
functional as a walker, it canbe personalized, and the
personalization makes it moreattractive. And, and I've seen
people with who are usingwalkers for an extended period
of time. And some of them evenhave a place for you know, like
a pocket where they can put youknow, notepad or magazine or
something like that. So whateveris going to help make the walker
(27:43):
more attractive and morevaluable and more useful is a
good idea.
Virginia (27:47):
No one wants to use a walker. But if you can make it
pleasant, fun, cute, attractive,whatever it helps. It's
important so they don't fall.
Steve (28:00):
Okay, well, I think we're almost out of time. In fact, I
think we're pretty close to 30minutes or so. Anyway, this was
terrific, Virginia. And it'sinteresting how you have built
this. And I just have to say,you know, you and I've talked
many times about the differencebetween you know, caring for a,
you know, a spouse and caringfor, you know, your mom or your
(28:23):
dad. And this just rings sotrue. Because I think you know,
when you're when you're dealingwith a spouse, you're kind of
like more intimately involved,not to say that you weren't, but
it's just like, they're justlooking at things from a
different and you saw many ofyour ideas were really
experiences that you had withyour mom, and I thought it was
just terrific.
Virginia (28:43):
Well, thank you very much. Our experiences are
different, yours was with yourwife, mine was with my mom.
There are similar, you know, thetips that I gave today and the
other day, some of them fitboth, and some of them don't.
Steve (28:58):
Well, I think a lot of them crossover. I just wanted to
say I continue to be amazed atthe insights that you've gleaned
as a part of this process andpart of this journey. So we'll
say goodbye until our nextepisode. And thank you for
joining us.
Virginia (29:15):
Thanks, you betcha.
See you next podcast.
Steve (29:18):
Spotlight on Care is produced by the University of
California Irvine, Institute onMemory Impairments and
Neurological Disorders (29:24):
UCI MIND. Interviews focus on
personal caregiving journeys,and may not represent the views
of UCI MIND. Individualsconcerned about cognitive
disorders, prevention ortreatment should seek expert
diagnosis and care. Pleasesubscribe to the Spotlight on
Care podcast wherever youlisten. For more information:
(29:45):
visit mind.uci.edu
From the University of California, Irvine, this is UCI
MIND's, Spotlight On Care, thepodcast where we share stories,
experiences, tips and advice oncaring for loved ones affected
by Alzheimer's and otherdementias.
Hello, and welcome to anotheredition of Spotlight on Care.
(00:27):
And this is kind of acontinuation of our really
exciting part one of the tipsfrom Gini and Steve and sorry,
Virginia and Steve. In anyevent, we were really happy with
our first edition and we've gota lot more to talk about. So
here we go. So Virginia, let'stalk about kind of that whole
issue about distraction. Andwhen some things that you found
(00:50):
that are ways to make it fun andeasy to make a distraction
happen,
Virginia (00:54):
Definitely, there are things that can make life easier
for both the caregiver and theperson with dementia. So why not
list a few of those things here?
I remember, my mom would sitthere and pick at her nails, she
would pick at her fingers pickedat her nails. And what came to
(01:14):
mind was, she needed somethingto do with her hands to make her
happy. They have now thesefabulous; they call them fidget
blankets. It is a small blanketthat you can put it on a table
top you can put it on your lap,and they have zippers and
buttons and pockets and thingsthey can fiddle with, which
(01:40):
would have been fabulous for mymom, would have been. And I've
talked to people who have usedthem, and they they love them;
not for long, but for a fewminutes, they sit there and
their hands are busy. And it'sgreat-- a squishy ball, they
sell these rubber balls, you'veseen them, CVS has them. And you
can squeeze the ball in yourhand and it can relieve stress,
(02:04):
it can make them feel better.
Another activity, which weenjoyed was, I would collect my
old costume jewelry, rings,earrings, necklaces, and I'd put
them in a pile and then put thatin front of your loved one,
(02:28):
along with a muffin cup becausethey can sort--they like to
sort-- you know the variousthings, a muffin cup or other
little cups that they can justseparate the items in. Napkin
folding. Just put a pile ofcloth napkins that you just got
out of the dryer and put that infront of them and a woman will
(02:50):
be very happy folding napkinsand helps.
Steve (02:54):
What about I think you've talked before about fake pets?
What about what about that?
Virginia (03:00):
Fake pets are wonderful. We tried real pets
for a while with my mom and itwas kind of, it was not good. We
had purchased two kitty cats forher because my brilliant idea, I
thought, pets fabulous. And wewalked into her room at assisted
living one time and said (03:20):
"Where are your cats?" And she said,
"What cats?" That's how we knewthis was not a good idea. They
sell fake pets, robotic dogs,robotic cats. They're wonderful.
They wag their tails, theyblink. They purr. They make
(03:44):
sounds and people, I thinkespecially women who love to
just feel like they're nurturingsomething, love to sit there
with a fuzzy, wonderful, fakepet in their laps. Doesn't
matter that it's fake. Doesn'tmatter. Fish, they sell fake
fish that will swim in anaquarium. Beautiful, they're
(04:08):
beautiful things. They swimaround, and they're soothing and
calming and mesmerizing.
Steve (04:17):
I might talk- just my experience with pets was a
little different. But I thinkVirginia is right. There's a
point in time where the petbecomes more of a problem, but
for the first stages of havingPatty at home, having a dog was
like a godsend because it was anactivity. It happened you know
the walks happened, you know thefeeding, making sure water,
(04:38):
taking them you know make surethey took care of their
business, all of that stuff. Andthen even the transition into
the community worked reallywell. And then there was a point
where Patty kind of forgot, justlike Virginia's mom did, and
then it was she would carry thedog upside down and it was you
know was not healthy for thedog. So the dog came home but I
think the whole idea of pets andsomething that can love them or
(05:01):
feel like it loves them. Even ifit's a fake pet, it's really a
great idea.
Virginia (05:05):
When she was in assisted living, they had
visiting people with their petsand their dogs and, and cats and
they would bring them and be inthe lobby area. And it was just
a lifesaver, was just alifesaver.
Steve (05:22):
Okay, well, what about therapy dolls?
Virginia (05:25):
Same concept, same concept, these dolls. They look
real, they feel real. They'vemade them with soft skin. They
can change their clothes, ifthey want to put on a new little
dress on a doll, especially I'mnot talking a lot about men, I
don't think but women, they justthey're, they love these dolls
(05:51):
and can sit there for hours witha doll on their lap. And there
was something about it that Idon't know, it took me a while
to get used to that whole ideabecause it was fake. And it was
something that baby you know,like a five year old usually
does. But you know what? Madeher happy!
Steve (06:07):
Yeah maybe sorry, maybe.
Maybe. For guys, it's, you know,some sort of other anatomic type
doll. You know, like, you know,old toy soldiers, whatever might
have been a hobby before for aguy for for your dad.
Virginia (06:24):
Cars? What about small metal cars, then? Some people
are car collectors. Yeah. Justanything that can kind of
distract them. And who wantssomebody sitting around watching
TV all day?
Steve (06:39):
Correct. So let's let's move on. That's a great section.
Let's talk about clothingissues. You mentioned several
suggestions here. I think we canprobably go through them
quickly. But go ahead and getstarted.
Virginia (06:50):
Yes, I remember when I discovered elastic waist pants
for my mom. Walmart has awonderful selection. They can.
They're not just sweats. You canget regular lovely fabric for
women. Men, they have, of coursesweats that are just elastic
waist. But they also havethinner fabric. So you can't
(07:14):
always think well, they'll betoo hot. A lot anything to
eliminate buttons and zippersjust makes life easier for both
the caregiver and the personwith dementia. Few or no buttons
that can help especially andtops too. Pull over shirts --a
shirt that has maybe a button atthe top. Anything to make life
(07:38):
easier. Getting clothes, on andoff, will simplify life.
Steve (07:44):
Yeah, I think that's really important. I was thinking
about one of the issues,especially as you go through
this journey, things change.
Sizes change. Oh, yes,surprisingly, Patty put on
weight when she went intocommunity and I had to get
bigger sizes the first time I'veever remember her adding that
much weight. And then of course,the opposite. The opposite
(08:09):
happened as we went along. Andthen we had to get smaller sizes
again. So just kind of stayingon top of having enough clothes
and making sure you've got theright sizes. What about shoes?
And what about nighttime?
Virginia (08:22):
Well, you know, they're making wonderful slip-in
sneakers now. Skechers makes awonderful pair of shoes, that no
ties, nothing complicated. Theyget to the point, unfortunately,
where they really can't tietheir shoes. So to be able to
slip into shoes that are secureand safe for walking is a
(08:45):
lifesaver. Night gowns that openin the back. When you get to the
point where there's incontinenceand there needs to be some kind
of a change in the middle of thenight. Perhaps not always. But
sometimes. And if the night gownopens in the back, that
eliminates difficulties ofpulling something down. Nice
(09:07):
shirts, don't they sell nightshirts for men? Yeah, I didn't
have that problem because Iwasn't taking care of a man but
my mom, I remember hearing thatif you get them a night gown
that opens in the back, lifebecomes simpler. Incontinence
products have improved. I didnotice that our assisted living
(09:28):
facilities, incontinenceproducts were not very good. So
I bought them separately at homemedical supply. But now
pharmacies have them all overeverywhere. They're pull up back
like underwear. And they'rethey're much easier for changes
and for the person to manage to.
Steve (09:49):
That's great. I think those things I remember all of a
sudden it started to happen andI as a guy, maybe I was out of
my element. And I have changed afew diapers in my lifetime but
just getting used to that wholeidea. And, yeah, that's diapers
are much better than they were10 years ago.
Virginia (10:07):
Much better than they were 10 years ago.
Steve (10:09):
Alright, let's go back and talk a little bit more about
the bathroom and water. And youyou've talked about this being a
scary place. Why don't youexpand on that?
Virginia (10:19):
It's not to say that everyone with dementia will
develop a fear of water, butit's very common. My mom did for
a while and didn't last. But fora while she was afraid to death
of water. Getting someone toshower when that happens is not
easy. There are some tricks. Ithink the biggest trick is to
(10:40):
make the bathroom a verywelcoming, warm, friendly place
to be. You don't leave the waterrunning when they're brushing
their teeth. But again, we'vetalked about the importance of
music, put a little music in thebathroom, but give them their
favorite songs when they're inthe bathroom either for
(11:02):
showering, bathing or going tothe bathroom. We had mentioned
before the importance ofaromatherapy, get that nice
smell going on in the bathroomthat can that can work wonders.
It sounds counterintuitive, buta dish of treats. My mom was a
candy eater. A dish of treats.
If they knew there's a dish oftreats in the bathroom, they
(11:25):
might be more willing to go inthere. Towel warmers, you can
get them anywhere now towelwarmers are wonderful. And
Shower chairs. If they'resitting in the shower on a
chair, they might want a towelaround their upper body for
warmth and just modesty they canthey can be very very nice a
(11:47):
plain towels you if you don'thave a towel warmer but a towel
for them to hold on to can help.
Sometimes you're just going tohave to forget showering for a
while and they sell largetoweletes at the pharmacies now.
For bathing. You just wash themthat way and and you just do
(12:11):
what you can while they havethis fear of water, and then
over time, it changes back, itchanges back. They have visors
so that if you're going to washtheir hair, the soap won't get
in their eyes. Children'sflavored toothpaste. Mom was
afraid of water didn't want tobrush her teeth. We figured out
(12:31):
that a children's flavoredtoothpaste with a spit basin.
She didn't even have to go intothe bathroom to brush her teeth.
We had a cup of water and wewould brush her teeth with this
little cherry flavored you knowbubble gum flavored toothpaste.
Give her some water and shewould spit into the bowl. That
(12:54):
worked for a while.
Steve (12:55):
So question for you, Virginia. So with this
children's flavored toothpaste?
Did you try it yourself?
Virginia (13:06):
I don't like cherry, I don't like bubblegum.
Steve (13:12):
Well, no, it makes sense.
Makes sense.
Virginia (13:14):
The first time, I tried it with her. Yeah, isn't
that funny? And then shampooinggot to be kind of a problem. And
this tip is basically forreally, really toward the end
stage. If you really want towash their hair. There are
sprays that you can get at thepharmacy that freshen hair,
(13:36):
that's fine. But if you reallywant to wash it with water, they
have something called an easyshampoo. And it's actually you
blow it up, it's rubber you blowit up, and you can put it or you
can put their you know, they'relying down in the bed and you
put their head in the kind ofrests their neck against the
basin and with water andshampoo, you can wash their
(13:59):
hair. It's not easy, but itmight be a solution that you
could try if you're reallydetermined to get the hair
washed.
Steve (14:06):
What about dry shampoo?
So did you try that?
Virginia (14:08):
Yeah, those are good.
Those are good. I always feelbetter when they're using water
and soap but yeah, but those canbe those can be fine until
they're back, able to shower andget their hair washed. I
actually hired a company onetime, a transport company
because mom was in a wheelchair,towards the end she was in a
(14:31):
wheelchair. And I hired atransport company to take her to
my hair salon. Because they hada very nice setup where I knew
she'd be comfortable. Theywashed her hair, they colored it
and curled it. I couldn't dothat. It's expensive. I couldn't
do that a lot. But you knowwhat? I think it was before a
holiday one time and I thoughtthat was a treat for her and
(14:53):
they were lovely people theyeasily put her into the back of
this van with her wheelchair.
She was in her wheelchair andthey secured it and we got to
the hair salon.
Steve (15:05):
Alright, let's see, let's move on to eating, my favorite
topic.
Virginia (15:13):
That's a topic that can get kind of rough for a
while.
Steve (15:16):
Yeah. Tell your first story about your mom with a
hamburger.
Virginia (15:20):
Oh yeah, I disagreed with her on something one day,
and she picked up her hamburger,and she threw it at me. This is
my mom, my sweet mom whowouldn't hurt a fly. I had
hamburger all over the front ofme. So, you know, eating becomes
more difficult because dexterityisn't good. They're not able to
(15:46):
do what they used to do. Butthey now have what they call
adaptive utensils. They havelarge handled spoons, large
handled forks, they have scoopedbowls. So in the bowl, you put
their food, and they can scoopit with their large utensil, and
(16:11):
it doesn't roll off a plate. Ifound those at the at home
medical supply store. You canfind them online too-- adaptive
utensils. Swallowing, toward theend, especially can become a
problem. And they have foodthickeners. So if you want to
serve them soup, you thickin it,and they can swallow it more
(16:34):
easily. Swallowing. I don't knowwhat the deal is. But it becomes
it can become difficult. And thethickeners are very common at
assisted living facilities. Alot of times they'll thicken
their food, they'll thickentheir liquids and it goes down
easier.
Steve (16:50):
What about appetite issues?
Virginia (16:52):
They can go through phases where they have lack of
appetite, it's really common.
And you're thinking, Oh, they'renot getting any nutrition? Oh,
what are we going to do? Mom gota prescription for it's called
Megace. And I think they havemany over the counter products
now, that will increaseappetite. And it worked. For
(17:12):
mom, it worked. She didn'talways have to be on it. But
when I noticed several dayswould go by we would get you
know, liquid protein drinks andstuff like that. But I noticed
that she just she was nothungry. She didn't want to eat.
And then you have to think abouta subject that I talked about in
in the first episode. It couldbe a sore tooth, you don't know,
(17:34):
because they can't really tellyou. But sometimes they just
naturally go through a lack ofappetite, and Megace can help or
a similar product.
Steve (17:46):
And then what about the-- It's always interesting to me
about when you talked aboutdolls and this whole evolution
of returning back to theirchildhood and when I saw bibs, I
thought about that. And yeah,just practical. Really.
Virginia (18:00):
It's just practical.
My only advice there is theysell adult bibs, but don't call
it a bib in front of your lovedone. I don't want anybody
telling me I have to put a bibon. Call it, for a woman, call
it an apron. "Let's put yourapron on." For a man. "Let's put
your big napkin on." Don't youthink that'd be better? Steve?
Steve (18:23):
I do. I do. I think that's very smart. Just a little
subtle difference. And once theyget used to the idea, and I've,
of course had many Italianfriends. And of course it's
almost habit for an Italian guywhen he's got spaghetti. He's
gonna put a napkin around hisneck and take care of it. Yeah,
Virginia (18:43):
I took mom out for a we went to a Vietnamese
restaurant and almost everythingthey had had noodles. And oh my
gosh, she wasn't miserable. Butshe couldn't really eat a whole
lot because noodles just werenot making it to her mouth. So
that was my fault. Not a goodchoice of restaurants.
Steve (19:02):
Well, that's an interesting topic. I was gonna
we're gonna move into mobility.
And I thought maybe we mightinsert something here. And you
kind of, it's a great segue.
What about eating out? Becausewe were talking about eating and
eating out and then adding tothat, visits back home once once
they're in a community. So let'stalk about kind of taking them
(19:23):
out for a meal, what some ofyour tips might be there.
Virginia (19:26):
You know, every time we took mom out to a restaurant,
she would look at me and she'dsay, I'll have what you're
having. And I thought, Okay, nowI'll try to order something that
I know she'll enjoy. But she wasintimidated by reading the menu.
It was overwhelming to her whenit was a big menu, which I
totally get. So I noticed her alot saying I'll have what you're
(19:49):
having. Another tip. You canhave little business card size
messages printed that say (19:55):
"The loved one with me has as
dementia, please understand",and you hand it to the waiter or
the waitress, that way they knowwhat's going on. And they're
kind, for the most part, theywere kind. So that's my
restaurant tip.
Steve (20:13):
Yeah, and a couple of things I would add there. One
is, you know, happy hour is agood time to go, as long as it's
not crowded. I think sometimesrestaurants in you know, in
busy, busy times, and of course,eating early becomes a pattern.
And I think you raised a reallygood point, it's almost, if you
know what to order, and you'regoing to a place, they're not
going to necessarily rememberthat this is their favorite
(20:35):
place, they're just going toremember the fact that you're
taking them out and you're goingto eat. And I think this is
something that kind of workswhen you're dealing with a
community. The other thing,community living, it's a way to
get a break, and you feel likeyou're doing something extra
special for them, you just haveto be careful about returning.
And sometimes that's an issue,but I experienced something
(20:56):
about bathrooms, and going outto dinner, or a meal, right? You
know, here I am a guy and I havea mom and a wife, sorry, in this
case, and it was like, whoa. Andthe first couple of times, I
literally had to stand outsidethe women's bathroom and talk to
ladies who are coming out sayingis my mother's still in there?
(21:17):
And then eventually, often awoman would say, "Well, let me
go back and check for you." Andsome sometimes they would help
her out. And then I finally kindof realized, it's like taking my
child into the bathroom. And Iwent into the men's bathroom,
and went into the stall. Andthat's what we did. You know, we
took care of things that way. Somaybe for guys, it's just not
second nature. But I did gothrough that experience.
Virginia (21:39):
You know, yes, a lot of times now they have, you
know, a restroom that can beused by either male or female,
which is really nice. But youand I did not have that with our
loved ones.
Steve (21:52):
Yeah, I think that's a very good point. Anyway, just a
couple of things there. Becausewe run into those. I wanted to
add something here about visitsto the home just an experience
that I had. My first few monthswith Patty in the community were
difficult, just because shewould constantly bring up
returning to home, even thoughwhen I wasn't there, she never
(22:15):
brought it up. But she would seeme and that would so you know,
do not go? Well no, you gobecause you want to be with
them. But I often always had tosay, Well, remember, the doctor
said you should be here becausethis is a better place for you
to get treatment for, you know,the problems that you have. And
that would give me a break tomove on.
Virginia (22:33):
You don't want to look at them and say, "You are home,"
you know, and it's a community.
That doesn't work.
Steve (22:40):
Yeah, I've heard people say in our men's group that they
tried that and it worked. Butreally, yeah, and again, every
journey is different. So I madethe mistake of bringing Patty
home a couple of times. Andbecause she kept asking about
she wanted to see her flowers,she wanted to see the waterfall.
She wanted to see this or thatand it was like, okay, and two
(23:02):
times one I brought her home andwe went outside and was a
beautiful sunny day. And shefell asleep on the on the divan
outside and it was lovely. Andthen she woke up and it was
like, Okay, time to go. And boy,she was not happy about going
back to the community. So Ithink you have to be careful
there. And again, you're goingto run into that moment in time
(23:24):
when you just can't go anymore.
And that's when I made thesecond mistake. We got set up
for Christmas. And the best timeof the year for Patty was
Christmas. She had all theseDickens village things and
lights and her trees were alwaysjust so amazing. And her
daughter was with us -- ourdaughter was with us. And so we
we decked out the house and webrought her home, and she was
(23:46):
overwhelmed by it. Now granted,this was somewhat later in the
process. But you know, you thinkit's a good idea. But reality is
whether is that going to be sucha dramatic change for them that
it's not going to be goodexperience. And it wasn't
exactly and was really sad wassad for me. And it was really
sad for my kids. So anyway, Ijust pass on those things in
(24:07):
terms of using judgment. Thankyou. Yeah. All right, let's it
kind of leads into talking aboutmobility. Why don't you talk
about some of these great ideasabout mobility.
Virginia (24:18):
Well, one really handy dandy thing that you can get for
your car is called a swivel carseat. And it's just a pad that
you put on the seat wherethey're going to sit and then
when they go to get out. Theyjust swivel it's just easier.
They also have handles you canattach to you know the the top
(24:40):
of the window area to help themget out of a car but after a
while it gets kind of difficultto get in and out of a car.
Anyway swivel car seat. In herlittle living area at assisted
living, we purchased what theycall a lift chair. It looks like
a lazy boy lounger chair, butit's motorized, and when you
(25:04):
push the button, it lifts andpushes them or tilts them
forward to get out of the chair.
My mom was not a big person, butstill getting in and out of a
chair was not easy. And they canbe rented or they can be
purchased. So I thought that wasa good idea. A heavy duty, it's
what they call a heavy duty gaitbelt, you put this belt around
(25:27):
this -- probably two to threeinches wide, and you know, it's
pretty heavy duty and you put iton them and you can lift them
yourself, hopefully not gettinginjured, but you can lift them
out of a chair. And we did useone of those quite often. And
then when they're walking, itsteadies them, you can kind of
(25:47):
hold on to the belt when you'rewalking. And they can be they
can feel a little more securewhen they're walking. There's
something called a Hoyer liftsling. Now this is really at the
end, but not so much at the endwhere they don't enjoy sitting
near a window, watching theyard, or whatever. But getting
(26:08):
out of a bed can become verydifficult. And this thing looks
scary, but it works. It's calleda Hoyer lift sling, and they can
be purchased or rented. And theyhave a series of straps that
actually lifts them up and outof a bed. And I think most
assisted living places do youhave them now.
Steve (26:31):
Yes, we had one. And Patty used it towards the end.
All right, let's, let's end uphere with your description of
fun accessories on walkers.
Virginia (26:44):
My mom loved this little stuffed bear. And on the
front of her walker, we had alittle cart, you know, I don't
know, a little basket, I guessit was a wire basket. And we put
this stuffed animal in thatbasket. She loved it. She loved
it-- wherever she walked aroundwith her walker, she had her
little stuffed bear with her.
And it sounds ridiculous. Butyou know what? She loved that
(27:06):
thing. Eventually they'll be ina wheelchair, if they make it
long enough. But with a walker,a cup holder, you know, they
have a million things you canattach to a walker now.
Steve (27:19):
Yeah, and I just think it's a whole idea. It's not just
functional as a walker, it canbe personalized, and the
personalization makes it moreattractive. And, and I've seen
people with who are usingwalkers for an extended period
of time. And some of them evenhave a place for you know, like
a pocket where they can put youknow, notepad or magazine or
something like that. So whateveris going to help make the walker
(27:43):
more attractive and morevaluable and more useful is a
good idea.
Virginia (27:47):
No one wants to use a walker. But if you can make it
pleasant, fun, cute, attractive,whatever it helps. It's
important so they don't fall.
Steve (28:00):
Okay, well, I think we're almost out of time. In fact, I
think we're pretty close to 30minutes or so. Anyway, this was
terrific, Virginia. And it'sinteresting how you have built
this. And I just have to say,you know, you and I've talked
many times about the differencebetween you know, caring for a,
you know, a spouse and caringfor, you know, your mom or your
(28:23):
dad. And this just rings sotrue. Because I think you know,
when you're when you're dealingwith a spouse, you're kind of
like more intimately involved,not to say that you weren't, but
it's just like, they're justlooking at things from a
different and you saw many ofyour ideas were really
experiences that you had withyour mom, and I thought it was
just terrific.
Virginia (28:43):
Well, thank you very much. Our experiences are
different, yours was with yourwife, mine was with my mom.
There are similar, you know, thetips that I gave today and the
other day, some of them fitboth, and some of them don't.
Steve (28:58):
Well, I think a lot of them crossover. I just wanted to
say I continue to be amazed atthe insights that you've gleaned
as a part of this process andpart of this journey. So we'll
say goodbye until our nextepisode. And thank you for
joining us.
Virginia (29:15):
Thanks, you betcha.
See you next podcast.
Steve (29:18):
Spotlight on Care is produced by the University of
California Irvine, Institute onMemory Impairments and
Neurological Disorders (29:24):
UCI MIND. Interviews focus on
personal caregiving journeys,and may not represent the views
of UCI MIND. Individualsconcerned about cognitive
disorders, prevention ortreatment should seek expert
diagnosis and care. Pleasesubscribe to the Spotlight on
Care podcast wherever youlisten. For more information:
(29:45):
visit mind.uci.edu
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I’m Jay Shetty host of On Purpose the worlds #1 Mental Health podcast and I’m so grateful you found us. I started this podcast 5 years ago to invite you into conversations and workshops that are designed to help make you happier, healthier and more healed. I believe that when you (yes you) feel seen, heard and understood you’re able to deal with relationship struggles, work challenges and life’s ups and downs with more ease and grace. I interview experts, celebrities, thought leaders and athletes so that we can grow our mindset, build better habits and uncover a side of them we’ve never seen before. New episodes every Monday and Friday. Your support means the world to me and I don’t take it for granted — click the follow button and leave a review to help us spread the love with On Purpose. I can’t wait for you to listen to your first or 500th episode!