Alzheimer's experts - could use thoughts

[creekland]

Just got back from my in-laws again and had a new experience with MIL (Advanced Alzheimers, but lives at home with FIL as sole caretaker - can't change that).

 

When we visit, I babysit her so the guys can have some time together.  This time we went out on a motor boat (one of her favorite activities) and she got splashed a little bit.  I used that opportunity to get her clothes washed (first time in who knows how long - they were horrid).  I had hubby help her change since she still remembers (most of the time) that he's her son - or at least that he belongs.

 

She wasn't happy with "different" clothes being on and squirmed a bit in her chair.  Then she suddenly announced she had awful tooth pain and either FIL or hubby did it to her.  She could NOT be calmed down.  She showed them a tooth that FIL said has been chipped for a long time (at least 5 years) and said it hurt and didn't feel right.  Ok, she didn't say it... she yelled it... and insisted that something be done since they did it to her.  However, it was late on the 4th and we were in a more rural location, so obviously no dentist was available.  She said (far more than once) that she was going to kill herself, or the men, etc.  It was awful.  She retreated to her room - we thought to go to bed.

 

We all assumed she'd broken more off her tooth on the boat during a choppy section (when we got slightly wet).

 

However... shortly after she emerged without major pieces of clothing on and asked where hers were.  They were dry at that point, so I quickly fetched them for her (MUCH cleaner!!!).  She put them on and... all thoughts about her tooth were gone - instantly.  It never got brought up again.  She went back to her stories and complaining about people, but all of that is normal for her.

 

I, of course, came to the conclusion there never was anything wrong with her tooth.  Her brain just messed up what was bothering her.

 

So... my question is... how can we get her to change clothes in the future so we can wash the ones she's wearing without all the awful drama?  The obvious choice would be to have identical clothes.  No chance on that.  Her favorites are well out of style (at least the shirt) and not common enough to find on e-bay.

 

I've also thought about trying to do it when she's sleeping, but she doesn't really sleep through the night.  She can be in her bedroom for 10 minutes and call that a night sometimes.  It's still my leading thought though.

 

Does anyone else have any others?

 

FIL just lets her wear hers all the time.  He will wash her pants when she's had accidents, but she has more than one pair of those.  I think it's the shirt...

[JFSinIL]

can you post a photo? Maybe the Hive can keep an eye out on ebay for a replacement/spare....

[Lang Syne Boardie]

My Grandma came to accept a homemade apron over all her outfits. It was Mom's idea to try it, since Grandma had always loved pretty calico prints. Mom sewed a new one every week, to bring as a gift, until the apron became a regular thing. Once Grandma accepted the apron, she was more willing to endure clothing changes.

 

I don't know if anyone would still want an apron, but maybe that concept would work with some other kind of light garment...?

 

 

Edited July 7, 2016 by Tibbie Dunbar

[zoobie]

Does she wear pajamas/nightgown? I agree with washing while she's in nightclothes and trying to find very similar items. Goodwill for nicely broken-in tops maybe.

[Storygirl]

Will she wear pajamas at night? My mom also became attached to a particular set of clothing. I could get her to put pjs on at night (sometimes over her objections) and would wash her clothes then. Even if I wasn't washing them (one was a red sweater embellished with poodles, so I only washed that occasionally), I would take them out of her room until after she went to sleep, then put them in her room for her to find when she awoke. I figured back then that it was better for her to have a few hours out of those clothes daily to let them air out, but I'm not sure it was really worth the effort I took.

 

Do you know how often she is bathing? Once she is undressed for bathing, maybe her clothes could be whisked into the washer. Bathing and showering are often resisted by those with Alzheimer's. If your FIL can't make her bathe and change clothes, could he make sure she uses deodorant and maybe wipes off with a baby wipe every day or so? And use a bib or apron when eating. At least the clothes might stay cleaner between washes.

 

 

[Storygirl]

The idea of switching out the favorite clothing for something similar is a good one, but may be extremely hard to implement. Mom was extremely attached to her one set of clothes and would get very anxious when I would try to get her to switch to something else.

 

She did move past that phase eventually and stopped caring what she wore.  You might take some solace in knowing that It is a phase, but it may last awhile. Mom was very picky for maybe two years and then moved into a different phase of the disease.

[prairiewindmomma]

Encourage your FIL to keep up the rotation in changing pants.  Once someone is fixated on a particular thing, it gets harder to introduce something new.  Aim for those natural times of changing clothes---when showering or going to bed. It's easier to make a quick switch out of sight then.  

 

Is she the sort that would dress up for a fancy occasion with encouragement and a lot of praise? I am helping a relative now who will do so to go out to eat at a restaurant or to attend a holiday gathering.  It is harder to take her out now, but that worked for a while. We would fuss and do hair, put on perfume and a favorite necklace.  Praise worked for her.

[Katy]

I'd try to find 5-7 duplicates of the closest thing (a tagless pink jersey shirt, for example), and try to make those the favorite.

 

During the transition, give her a favorite treat.  Ice cream or chocolate or butterscotch candy. She won't remember why she's happy, she'll just be happy.

[NorthwestMom]

These are all good suggestions. I definitely encourage trying to make changing (pants especially) and bathing a positive experience, pairing it with anything she finds pleasant, so that in the future if/when she becomes incontinent, changing her will be a lot easier.

[TechWife]

 

Do you know how often she is bathing? Once she is undressed for bathing, maybe her clothes could be whisked into the washer. Bathing and showering are often resisted by those with Alzheimer's. If your FIL can't make her bathe and change clothes, could he make sure she uses deodorant and maybe wipes off with a baby wipe every day or so? And use a bib or apron when eating. At least the clothes might stay cleaner between washes.

These large wipes are a bit easier to manage with my parents than baby wipes. Maybe they will be helpful to you as well.

 

https://smile.amazon.com/Prima-Wipes-Adult-Washcloths-Extra-large/dp/B00B8EDYPK/ref=sr_1_1_a_it?ie=UTF8&qid=1467868781&sr=8-1&keywords=Large+baby+wipes

 

There are a few different brands so if she doesn't like the way one feels, perhaps try another.

 

These shampoo caps come in handy, too. You don't have to be near a sink or have access to water . The shampoo is th the cap, you put the cap on and give a nice "head massage" the message it was mixes the shampoo and conditioner , because it is portable you can engage people whereefer they are - on the front porch, in the living room watching tv sometimes tools like thic can open up a whole new. Very htlpful procedure. Oh, here's a shampoo cap. Like other product, there are a few diffrtrfnt suppliers. https://smile.amazon.com/No-Rinse-Shampoo-Cap-5-Pack/dp/B009I12STI/ref=sr_1_1_s_it?s=beauty&ie=UTF8&qid=1467869311&sr=1-1&keywords=Shower+caps+with+shampoo+in+them

[creekland]

can you post a photo? Maybe the Hive can keep an eye out on ebay for a replacement/spare....

 

I might be able to once hubby is here - more specifically - his computer is since that's where we keep the photos.  We don't take them often now as her looks aren't what they were and everyone wants to remember her as she was.

 

In short, her favorite is a pull over navy blue crew neck long sleeved shirt with red roses on the front in the heart area.  It has a band around the bottom like many sweatshirts have, but it's not as heavy as many sweatshirts.  

 

In the winter she wears one with a snowman instead of the red roses.  Both pics have been important to her.  Now she likes to show off her flowers.  She might enjoy one with a beagle on it if I could ever find one, but the overall shirt must be navy blue.  That's her color.

 

She's seems to not recognize seasons now, so we might be able to swap the snowman for the flowers come to think of it...

 

 

Well....  I would probably suggest finding something similar: the style of stuff she likes to wear and buying multiple pairs of that one thing and make that her new favorite.  You will have severe drama once but eventually she will forget and it will become her new favorite.  Then it will be easier to  switch out.  Not sure if that would work.  Just a thought.

 

Good idea, but the severe drama is really a negative, and I'm not sure it would be just once.  A few things she can remember.  This would probably be one of them.

 

My Grandma came to accept a homemade apron over all her outfits. It was Mom's idea to try it, since Grandma had always loved pretty calico prints. Mom sewed a new one every week, to bring as a gift, until the apron became a regular thing. Once Grandma accepted the apron, she was more willing to endure clothing changes.

 

I don't know if anyone would still want an apron, but maybe that concept would work with some other kind of light garment...?

 

Another good idea, but she never wore aprons so I don't think we could convince her to now.

 

Does she wear pajamas/nightgown? I agree with washing while she's in nightclothes and trying to find very similar items. Goodwill for nicely broken-in tops maybe.

 

She does switch to pjs at night.  It's just her "night" can last 10 minutes (if she doesn't fall asleep).  Still... it's what I'm seriously thinking will have to be our risk - coupled with having "snowman" available.

[creekland]

Do you know how often she is bathing? Once she is undressed for bathing, maybe her clothes could be whisked into the washer. Bathing and showering are often resisted by those with Alzheimer's. If your FIL can't make her bathe and change clothes, could he make sure she uses deodorant and maybe wipes off with a baby wipe every day or so? And use a bib or apron when eating. At least the clothes might stay cleaner between washes.

 

Not nearly enough, nor is that something I can help her with at this point - only FIL, BIL, or hubby.  We really would like FIL to get help, but to date, he refuses.  He does an admirable job trying to take care of her, but he's 88 and she can be difficult.  The path of least resistance is often to just "let it go."  I jumped at the chance to wash her clothes because they had major areas of dried feces on them - as did her pjs and sheets (but those are easier to wash).

 

She did move past that phase eventually and stopped caring what she wore.  You might take some solace in knowing that It is a phase, but it may last awhile. Mom was very picky for maybe two years and then moved into a different phase of the disease.

 

Ooh, I am so hopeful she moves past this phase soon!  She may be close to that two year point now.

 

Encourage your FIL to keep up the rotation in changing pants.  Once someone is fixated on a particular thing, it gets harder to introduce something new.  Aim for those natural times of changing clothes---when showering or going to bed. It's easier to make a quick switch out of sight then.  

 

Is she the sort that would dress up for a fancy occasion with encouragement and a lot of praise? I am helping a relative now who will do so to go out to eat at a restaurant or to attend a holiday gathering.  It is harder to take her out now, but that worked for a while. We would fuss and do hair, put on perfume and a favorite necklace.  Praise worked for her.

 

The last time she dressed up that I know about was my oldest son's wedding.  He just celebrated his third anniversary.

 

She actually hates praise and can get in a tizzy if we try too much "out of line."  I was able to get her laughing a little bit though.  When she threatened to kill herself by walking off the pier and drowning, I came back with, "Oh.  I don't think that's the method I would choose... that cold water all over... getting into my lungs - yuck!"  She laughed (even though she was still upset overall) and said, "I guess you're right."  Then she didn't mention that method again.  She switched to shooting herself or those who did it to her.  I wasn't as successful trying to make light of the mess that would cause.  But I tried humor with some other things that upset her and had some success at times.  

 

I'd try to find 5-7 duplicates of the closest thing (a tagless pink jersey shirt, for example), and try to make those the favorite.

 

During the transition, give her a favorite treat.  Ice cream or chocolate or butterscotch candy. She won't remember why she's happy, she'll just be happy.

 

Happy?  Some of these folks have times when they're happy?  Seriously?  All stories, all experiences, everyone she sees - except her own personal family - it's all gloom and doom and people out to get her (rob, maim, etc).

 

Food is just food to her - no comments about it at all.  She eats what's on her plate.

 

 

These are all good suggestions. I definitely encourage trying to make changing (pants especially) and bathing a positive experience, pairing it with anything she finds pleasant, so that in the future if/when she becomes incontinent, changing her will be a lot easier.

 

The incontinent thing is there at times - not full time - but getting more common.  (sigh)  FIL does change her and tries to clean up when that happens.  He lets her handle her own bathroom time at other times and she still seems to be doing ok with that.  We just have to make sure there's toilet paper available, etc.

 

These large wipes are a bit easier to manage with my parents than baby wipes. Maybe they will be helpful to you as well.

 

https://smile.amazon.com/Prima-Wipes-Adult-Washcloths-Extra-large/dp/B00B8EDYPK/ref=sr_1_1_a_it?ie=UTF8&qid=1467868781&sr=8-1&keywords=Large+baby+wipes

 

There are a few different brands so if she doesn't like the way one feels, perhaps try another.

 

These shampoo caps come in handy, too. You don't have to be near a sink or have access to water . The shampoo is th the cap, you put the cap on and give a nice "head massage" the message it was mixes the shampoo and conditioner , because it is portable you can engage people whereefer they are - on the front porch, in the living room watching tv sometimes tools like thic can open up a whole new. Very htlpful procedure. Oh, here's a shampoo cap. Like other product, there are a few diffrtrfnt suppliers. https://smile.amazon.com/No-Rinse-Shampoo-Cap-5-Pack/dp/B009I12STI/ref=sr_1_1_s_it?s=beauty&ie=UTF8&qid=1467869311&sr=1-1&keywords=Shower+caps+with+shampoo+in+them

 

Those are interesting.  I wonder how she'd take to them.  About once a month at this point FIL takes her to her hairdresser to get her hair done.  That's still ok with her.

[creekland]

Hugs Creekland.  I know you think the drama won't be worth it but in some ways you have to decide what is most important and then just stick with it and they WILL eventually get used to it and it being the new normal.  

 

When we made the difficult decision to move my husband's grandmother to a memory care unit, she was so mad.  She cussed at my husband and hit my mother-in-law.  ( She would have been horrified if she could have seen herself!)  We moved her bedroom furniture and favorite chair she slept in, clothes, etc.  For the first week she was a mess.  However, she got used to it and it became her "home."  She thought she was at home. 

 

I wish we could get FIL to consider this idea.  I think the exact same thing would happen.  Right now she can't remember if she's at home or their vacation cottage even though the two are vastly different.

[Joules]

I wish you well.  With my dad, all he wants to wear is work shirts (blue collar Dickies), but they were getting stained and ripped, because he is still active.  Fortunately, you can buy more just like them.  Unfortunately, they are not soft like the ones that have been washed and worn a thousand times.  He would throw away (or give away) the new ones and go back to the old.  So the last batch I bought, I started washing with our laundry.  Before I gave them to him, I threw those shirts in every single load I washed for over a month.  They were probably washed a hundred times considering how much laundry I was doing at the time.  It worked and I was able to slowly "disappear" the old ones.

 

Used clothes might work for you, but we do fragrance-free detergents here.  I was never able to get the smell out of thrift store clothes.  If she isn't sensitive to smell, it might work though.

 

Anyway, whatever you are able to sneak in, try washing it to death first.

[Katy]

...

 

Happy?  Some of these folks have times when they're happy?  Seriously?  All stories, all experiences, everyone she sees - except her own personal family - it's all gloom and doom and people out to get her (rob, maim, etc).

 

Food is just food to her - no comments about it at all.  She eats what's on her plate.

...

 

Yes.  Finding what makes them happy was my favorite part of working in Alzheimer's wards.   There have been studies published on how replacing Ativan with M&M's can be more effective care in dementia units.

 

Usually it involves some combination of:

• sugar (Their favorite treats as a child - such as small servings of ice cream or chocolate),
• music or television they like (frequently from when they were a young adult - there is a reason so many nursing homes have the Lawrence Welk hour every week),
• something soft and fluffy and comfortable such as stretchable fleece or tagless jersey clothing and fuzzy lap blankets. 
• And some, who are frequently cold, do really well with one of those microwavable rice or bean filled heating pads on their laps or on the back of their necks. 

 

If she's still verbal, the process of calming her down is similar to sympathizing then  distracting an unhappy toddler or preschool child. A huge part of it is your attitude.  First, sympathy that they are unhappy, and rather than argue about what is factual, empathize that they are uncomfortable.   "I'm so sorry your tooth hurts.  I'll call the dentist.  In the mean time, let's do what we can to make you feel better." Then offer something.  Ice cream might numb her tooth pain. Would she like some ice cream make her feel better?  Sprinkle smiles, praise, and anything that's a treat for her into her care until she's genuinely happy. It takes a few days to figure out what makes her happy and what her triggers are.

 

Some people are also calmed by instructions - from themselves, from their husbands, from their doctor.  So if the only time you can get her out of her clothes to wash them is also bath time, breezily coming up to her with a conspiratorial smile and saying, "You asked me earlier to help you take a bath.  Would you like to do that now?"  Or "Your doctor said to give you this medicine every time your tooth hurts.  Would you like to take it now, or after Lawrence Welk?"

 

She might not recognize you, and she might not remember that she did or didn't ask you for a bath, or that she has or has not already been to the dentist, but you are familiar and smiling and she's already happy so she'll trust you enough to follow your lead.  She'll be fussy about every part of the process.   For a bath, for example, if she wants to wash her face then hair rather than hair then face, follow her lead. Have someone else launder the dirty clothing while she's in the shower, then offer her a couple different pairs of clean warm pajamas to choose from.

 

Sometimes the triggers are unavoidable - you do have to get her out of her favorite shirt to launder it sooner or later. Starting by apologizing for whatever makes them uncomfortable helps.  "I know that's your favorite shirt and it comforts you, but I'm sorry, we need to wash it.  Which shirt would you like to wear while it's in the laundry?"  She'll still get upset, but the degree she gets upset will be lessened.

 

If you haven't already read The 36 Hour Day, you should. 

[creekland]

Yes.  Finding what makes them happy was my favorite part of working in Alzheimer's wards.   There have been studies published on how replacing Ativan with M&M's can be more effective care in dementia units.

 

Usually it involves some combination of:

• sugar (Their favorite treats as a child - such as small servings of ice cream or chocolate),
• music or television they like (frequently from when they were a young adult - there is a reason so many nursing homes have the Lawrence Welk hour every week),
• something soft and fluffy and comfortable such as stretchable fleece or tagless jersey clothing and fuzzy lap blankets. 
• And some, who are frequently cold, do really well with one of those microwavable rice or bean filled heating pads on their laps or on the back of their necks. 

 

If she's still verbal, the process of calming her down is similar to sympathizing then  distracting an unhappy toddler or preschool child. A huge part of it is your attitude.  First, sympathy that they are unhappy, and rather than argue about what is factual, empathize that they are uncomfortable.   "I'm so sorry your tooth hurts.  I'll call the dentist.  In the mean time, let's do what we can to make you feel better." Then offer something.  Ice cream might numb her tooth pain. Would she like some ice cream make her feel better?  Sprinkle smiles, praise, and anything that's a treat for her into her care until she's genuinely happy. It takes a few days to figure out what makes her happy and what her triggers are.

 

Some people are also calmed by instructions - from themselves, from their husbands, from their doctor.  So if the only time you can get her out of her clothes to wash them is also bath time, breezily coming up to her with a conspiratorial smile and saying, "You asked me earlier to help you take a bath.  Would you like to do that now?"  Or "Your doctor said to give you this medicine every time your tooth hurts.  Would you like to take it now, or after Lawrence Welk?"

 

She might not recognize you, and she might not remember that she did or didn't ask you for a bath, or that she has or has not already been to the dentist, but you are familiar and smiling and she's already happy so she'll trust you enough to follow your lead.  She'll be fussy about every part of the process.   For a bath, for example, if she wants to wash her face then hair rather than hair then face, follow her lead. Have someone else launder the dirty clothing while she's in the shower, then offer her a couple different pairs of clean warm pajamas to choose from.

 

Sometimes the triggers are unavoidable - you do have to get her out of her favorite shirt to launder it sooner or later. Starting by apologizing for whatever makes them uncomfortable helps.  "I know that's your favorite shirt and it comforts you, but I'm sorry, we need to wash it.  Which shirt would you like to wear while it's in the laundry?"  She'll still get upset, but the degree she gets upset will be lessened.

 

If you haven't already read The 36 Hour Day, you should. 

 

This is very, very helpful.  Thanks for taking the time to type it all out so clearly.

 

I already sympathize and follow her lead, then distract.  That works well - far better than challenging (what others tend to do).  I've also tried changing the TV (left on Fox News continuously). TBH, I try changing the TV for my own sanity... but it hasn't worked much.  She's so used to the commercials and repetitiveness of Fox, that switching it to something else causes concern.  The most success I've had has been with Benji movies (she can't follow the movie, but she loves small dogs) or parts of cute animal videos.  She won't watch them on a computer though - has to be TV.  I tried older shows (Gilligan's Island, etc), but she can't follow it enough and is upset that she doesn't remember who the characters are.

 

I have not tried instructions, but I suspect those would work well for her during this phase.  So many times she's not sure what she likes (with food or doing things) and it works there.  Simple choices might help.  I'm not sure.

 

The book sounds interesting.  It could very well be my next read.

[Katy]

This is very, very helpful.  Thanks for taking the time to type it all out so clearly.

 

I already sympathize and follow her lead, then distract.  That works well - far better than challenging (what others tend to do).  I've also tried changing the TV (left on Fox News continuously). TBH, I try changing the TV for my own sanity... but it hasn't worked much.  She's so used to the commercials and repetitiveness of Fox, that switching it to something else causes concern.  The most success I've had has been with Benji movies (she can't follow the movie, but she loves small dogs) or parts of cute animal videos.  She won't watch them on a computer though - has to be TV.  I tried older shows (Gilligan's Island, etc), but she can't follow it enough and is upset that she doesn't remember who the characters are.

 

I have not tried instructions, but I suspect those would work well for her during this phase.  So many times she's not sure what she likes (with food or doing things) and it works there.  Simple choices might help.  I'm not sure.

 

The book sounds interesting.  It could very well be my next read.

 

As an illustration of how the instruction thing works.... I once had a nursing home resident who would scream every morning at the top of her lungs.  She HATED the compression stockings prescribed to her, but she had a history of blood clots so she had to wear them. Most staff would just put the stockings on as fast as possible to get the screaming over with.  I'd pull out the stockings apologetically and say,"I'm sorry  (her name), I know you hate these uncomfortable stockings because they pinch, but the doctor said you needed to wear them."  She'd say, "Well then I guess we better put them on then."  And happily let me put on the tight things without complaint.  When it was her choice she was okay with it.  And then she'd be happier for hours afterwards than she did on the mornings she would scream at some poor CNA or nurse who didn't know any better than to be polite and explain the situation first. She wouldn't remember the stockings incident 5 minutes later, mind you, but moods aren't in the same part of the brain that memory is in, so just that extra 30 seconds of conversation made the whole morning smoother.

[need2read]

Has she been checked recently for a UTI? UTIs in the elderly can cause severe mental problems including paranoia (thinking everyone is out to get her) and increased violent behavior. My husband's aunt has dementia and every time her behavior seems to go downhill suddenly they check her for a UTI and it never fails, she has one. The same thing used to happen with my grandmother. It's easy for them to get infections because of poor hygiene and not drinking enough. Treating her for a UTI, if she has one, won't make her Alzheimer's go away but it may help.

 

 

Sent from my iPhone using Tapatalk

[SparklyUnicorn]

Has she been checked recently for a UTI? UTIs in the elderly can cause severe mental problems including paranoia (thinking everyone is out to get her) and increased violent behavior. My husband's aunt has dementia and every time her behavior seems to go downhill suddenly they check her for a UTI and it never fails, she has one. The same thing used to happen with my grandmother. It's easy for them to get infections because of poor hygiene and not drinking enough. Treating her for a UTI, if she has one, won't make her Alzheimer's go away but it may help.

 

 

Sent from my iPhone using Tapatalk

 

Oh yeah.  I knew one guy who went into an absolute rage, and it was later discovered he had a UTI. 

[SparklyUnicorn]

Not an expert by any stretch, but I worked in a nursing home for a bit as a social worker.  Sometimes I found it useful to play along as if the problem was real.  Your tooth hurts, let me look to see if I can see anything.  Or similar tactics with little kids (AKA bribery).  If you could have whatever you wanted, what would you want?  Ice cream.  Ok...I'll get you ice cream.  And I would, and they calmed down.

 

One woman would flip out over her parents being mad at her.  For days on end she'd talk about being upset that her parents were mad.  I mean good grief imagine you lose most of your freaking memory, but you are stuck in an endless loop of thinking your parents are mad at you.  So I played along.  What if I talk to your parents about it?  Or...I talked to your Mom, she's not mad at you at all.  Calmed her down many times.  Wasn't a magical fix forever, but maybe for a few hours she'd at least not be worried that her mother was mad at her.

 

 

Edited July 7, 2016 by SparklyUnicorn

[SparklyUnicorn]

In terms of the bathing, clothing thing, I have no advice.  That's not something I dealt with.  Unfortunately, the staff would usually just force stuff (and that was never pretty).

 

 

[Katy]

Yes, checking for UTI's with sudden worsening of symptoms helps.

 

So can giving her a little coconut oil, especially fractionated coconut oil.  The kind that's liquid at room temperature.  The lipids break down to ketones, so if she has true alzheimers (as opposed to some other sort of dementia), it's possible her brain cells aren't able to get enough food.  Ketones don't require insulin, so for certain people it is a HUGE help.  More is not better though, because coconut oil is a laxative. And there is nothing worse than someone with dementia, diarrhea, AND a sore bottom who is angry, suspicious, and refuses to let you help.  You have to force care so you don't get some sort of skin breakdown, and that is difficult both emotionally and physically for everyone involved.

[Katy]

Ooh, one more thing.  You can get instant-read urine tests to keep at home that read protein and bacteria levels.  I think in some areas they are available in drug stores, but in others a doctor has to prescribe them for you.  At any rate, it helps to have them on hand.  Then most doctors will just call in a prescription for you without bringing her in.

[creekland]

As an illustration of how the instruction thing works.... I once had a nursing home resident who would scream every morning at the top of her lungs.  She HATED the compression stockings prescribed to her, but she had a history of blood clots so she had to wear them. Most staff would just put the stockings on as fast as possible to get the screaming over with.  I'd pull out the stockings apologetically and say,"I'm sorry  (her name), I know you hate these uncomfortable stockings because they pinch, but the doctor said you needed to wear them."  She'd say, "Well then I guess we better put them on then."  And happily let me put on the tight things without complaint.  When it was her choice she was okay with it.  And then she'd be happier for hours afterwards than she did on the mornings she would scream at some poor CNA or nurse who didn't know any better than to be polite and explain the situation first. She wouldn't remember the stockings incident 5 minutes later, mind you, but moods aren't in the same part of the brain that memory is in, so just that extra 30 seconds of conversation made the whole morning smoother.

 

Any suggestions to ease the stress of change?  She's fine with us arriving, but gets really upset at the thought of us leaving - even when I tell her we're not going for a few days.  That upset-ness - like the tooth - manifests itself in a myriad of ways from fear to stranger stories and general jumpiness.

 

When FIL leaves she's really upset too (if she figures it out).  Of course I try to not let her know, but when she hasn't seen him in a couple of hours she often figures it out even though she can't comprehend time anymore.  That one has stymied me.

 

Has she been checked recently for a UTI? 

 

No, but with her lack of cleanliness, it wouldn't surprise me.  FIL won't even attempt to get her in to see a doctor unless she's bleeding significantly (as has happened with a fall once).  She's adamantly against doctors.  They're all crooks you know.  She won't take meds willingly either - not even Tylenol when I suggested it for her "tooth pain" (when I thought that part was real).

 

Not an expert by any stretch, but I worked in a nursing home for a bit as a social worker.  Sometimes I found it useful to play along as if the problem was real.  Your tooth hurts, let me look to see if I can see anything.  Or similar tactics with little kids (AKA bribery).  If you could have whatever you wanted, what would you want?  Ice cream.  Ok...I'll get you ice cream.  And I would, and they calmed down.

 

One woman would flip out over her parents being mad at her.  For days on end she'd talk about being upset that her parents were mad.  I mean good grief imagine you lose most of your freaking memory, but you are stuck in an endless loop of thinking your parents are mad at you.  So I played along.  What if I talk to your parents about it?  Or...I talked to your Mom, she's not mad at you at all.  Calmed her down many times.  Wasn't a magical fix forever, but maybe for a few hours she'd at least not be worried that her mother was mad at her.

 

I thought about ice cream, but had her tooth pain been real, that could have really been awful (cold on nerve).

 

I definitely play along with her on many things - her parents, her history, etc.  I refuse to play along with her racism (always terrible - on a 1 - 10 scale, she's a 20 and it's, of course, one thing she's latched onto).  I have learned to ignore words that make my blood boil, but I will never play along with it.  I try distraction.  It rarely works.

 

Fortunately, it's taught my boys a lot about racism and how awful it can be.  Youngest son was with us on this past visit and jokingly asked me before we got there if I thought grandma was ready to hear, "Yes grandma, I have found the love of my life.  He's a nice young black boy and we live together at college."  His roommate at college is black, and even though he isn't gay, he's also not homophobic so it was cute overall.  He knew better than to bait MIL even if it's so tempting...  We all remain glad that the racism in her line dies with her (and FIL, but he's more tactful).

[creekland]

Yes, checking for UTI's with sudden worsening of symptoms helps.

 

So can giving her a little coconut oil, especially fractionated coconut oil.  The kind that's liquid at room temperature.  The lipids break down to ketones, so if she has true alzheimers (as opposed to some other sort of dementia), it's possible her brain cells aren't able to get enough food.  Ketones don't require insulin, so for certain people it is a HUGE help.  More is not better though, because coconut oil is a laxative. And there is nothing worse than someone with dementia, diarrhea, AND a sore bottom who is angry, suspicious, and refuses to let you help.  You have to force care so you don't get some sort of skin breakdown, and that is difficult both emotionally and physically for everyone involved.

 

How much is good/too much?  This would be easy to try and seems well worth a trial.

 

Ooh, one more thing.  You can get instant-read urine tests to keep at home that read protein and bacteria levels.  I think in some areas they are available in drug stores, but in others a doctor has to prescribe them for you.  At any rate, it helps to have them on hand.  Then most doctors will just call in a prescription for you without bringing her in.

 

This too I will look for.  If she allows hubby or FIL to assist in the bathroom when she is urinating (right now she won't), we could find out.  Hubby would most likely be willing to try it on our next visit - and that might not be too far away.  

[Katy]

Any suggestions to ease the stress of change?  She's fine with us arriving, but gets really upset at the thought of us leaving - even when I tell her we're not going for a few days.  That upset-ness - like the tooth - manifests itself in a myriad of ways from fear to stranger stories and general jumpiness.

 

When FIL leaves she's really upset too (if she figures it out).  Of course I try to not let her know, but when she hasn't seen him in a couple of hours she often figures it out even though she can't comprehend time anymore.  That one has stymied me.

 

 

No, but with her lack of cleanliness, it wouldn't surprise me.  FIL won't even attempt to get her in to see a doctor unless she's bleeding significantly (as has happened with a fall once).  She's adamantly against doctors.  They're all crooks you know.  She won't take meds willingly either - not even Tylenol when I suggested it for her "tooth pain" (when I thought that part was real).

 

 

I thought about ice cream, but had her tooth pain been real, that could have really been awful (cold on nerve).

 

I definitely play along with her on many things - her parents, her history, etc.  I refuse to play along with her racism (always terrible - on a 1 - 10 scale, she's a 20 and it's, of course, one thing she's latched onto).  I have learned to ignore words that make my blood boil, but I will never play along with it.  I try distraction.  It rarely works.

 

Fortunately, it's taught my boys a lot about racism and how awful it can be.  Youngest son was with us on this past visit and jokingly asked me before we got there if I thought grandma was ready to hear, "Yes grandma, I have found the love of my life.  He's a nice young black boy and we live together at college."  His roommate at college is black, and even though he isn't gay, he's also not homophobic so it was cute overall.  He knew better than to bait MIL even if it's so tempting...  We all remain glad that the racism in her line dies with her (and FIL, but he's more tactful).

 

Lie and distract.  I can point out some verses in Galatians and Ephesians that will even make it biblical to lie and distract.  "We're not leaving, we're right here!"  Leave when she's watching Faux news or is napping.  If she realizes her DH isn't there, lie and say he ran out to the car to get something and will be right back.  Remember, moods last much longer than memories. Smile, act as if everything is fine, be happy, and she will be too.  When she's saying something racist or otherwise inappropriate, your version of smiling and saying, "Now  (name), you know that's not appropriate.  Don't say things like that!  Be good!"  The important part is to smile.  Then she might think that you're on her side even though you completely disagree with her. At any rate it will end the tirade without making her agitated.

 

How much is good/too much?  This would be easy to try and seems well worth a trial.

 

 

This too I will look for.  If she allows hubby or FIL to assist in the bathroom when she is urinating (right now she won't), we could find out.  Hubby would most likely be willing to try it on our next visit - and that might not be too far away.  

 

I'd start with something small.  A teaspoon of coconut oil or half a teaspoon of fractionated oil once a day to start, then slowly working up to maybe a tablespoon a day, increasing the dose once a week unless/until she gets loose stools.  If she has alzheimers and sugar metabolism in her brain is part of the problem you should see a positive difference in 3-6 weeks.  I have bought fractionated oil next to the coconut oil in Walmart.  I haven't looked in many other large grocery store chains, so I don't know how widely available it is otherwise. I know you can buy it online, but it is SUPER expensive to get the medical kind.

 

You can get a hat for the toilet from a pharmacy or medical supply company.  You just put it beneath the toilet seat, so when she goes to sit down you can get a sample.  Then you can put it in a bag and take it to her doctor for testing if you wish.

[SebastianCat]

Any suggestions to ease the stress of change?  She's fine with us arriving, but gets really upset at the thought of us leaving - even when I tell her we're not going for a few days.  That upset-ness - like the tooth - manifests itself in a myriad of ways from fear to stranger stories and general jumpiness.

 

My FIL just passed away last month after living with dementia for 19 years.   I can't help with all of your questions, but we found with FIL that we were giving him WAY too much information to process.   He couldn't process statements like, "We're going to go have dinner in a little while" or "We're going to go have dinner in an hour."    Instead, we'd just sit and watch TV with him until it was time to go, then announce, "It's time for dinner."   I would try to do something similar when discussing plans for leaving - give as little information as possible and only focus on one idea or concept at a time.

 

FIL would also re-wear clothes over and over.   He had lived in a regular assisted living facility when MIL was alive (they had an apartment together), and she made sure he bathed regularly and would swap his clothes out while he showered.   But after MIL passed away last year, we weren't sure he was bathing and he just put the same dirty clothes on over and over.   We moved him to memory care where the bathroom was down the hallway from his room and staff was available to help bathe, and that helped tremendously.   

 

We found that he was MUCH more receptive to someone "official" (i.e., staff at the memory care facility) telling him, "It's time to bathe," rather than family members.   Somehow that apron that the caregivers wore gave them more authority in his mind.    If your FIL would agree to let an outside caregiver start coming just to help with bathing every couple of days, that might diffuse the clothes situation with your MIL, and would give FIL a chance to wash her clothes while the caregiver was there.   Just a thought.

 

Bathing is one of those tasks that many dementia patients struggle with because it's so complicated and involves so many steps that must be followed in order.    Turning on the faucet, adjusting the temperature, changing water flow from tub to shower (sometimes), unbuttoning clothes, unzipping zippers, pulling down pants, taking off shoes - and more.   If you just think about how many tasks are involved in bathing, and imagine that you have the mental capacity to follow and comprehend instructions of a young toddler, it helps you understand why so many dementia patients struggle with it.

 

I also highly, highly recommend The 36 Hour Day.   I also recommend that you (actually, your DH, since these are his parents) continue talking to your FIL about the inevitability that at some point, he will no longer be able to care for her by himself.   You may have to rinse and repeat every time you see him or have a conversation with him, but it would help if your family had some idea of what that will look like when the time comes, rather than having to react to an emergency situation.   

[Katy]

FTR, alzheimers is one condition I would put my own mother in a nursing home for. It's simply too hard to deal with by one person, and I've seen many cases where the stress makes the other partner ill and they both move into a nursing home, her with alzheimers, him with cancer or something similar.

 

I wonder if your FIL would consider moving into a nursing home with his wife.  That way he could be there with her every day to ensure her needs are being met, AND he wouldn't need to be the one up with her in the middle of the night.  Sometimes when one partner is fairly healthy and the other needs 24 hour care that is a temporary move.  In other cases even when the sick partner passes, the healthier one finds they like the nursing home.  Someone will fetch them whatever they like.  They don't need to cook or clean.  There are constant activities, coffee breaks, games, and church without going anywhere.  All the difficult aspects of life are handled and the easy, fun aspects are easier. If he's independent, he could still get away to his room and close the door when he wanted privacy or just to watch TV alone. He could make sure she's getting the care she needs (supervising, calling for help, teaching the nurses the way she likes things), and he could get enough rest to care for himself.

 

I think our new neighbors are a couple in a situation like this.  A gardener and a maid come over once or twice a week.  Once or twice a month an older lady with a walker come to the house, looks over the garden, and goes inside for half an hour or so.  Then she leaves again for at least a couple weeks.  I'm guessing her husband is in a nursing home and she stays with him most of the time, but is capable of being independent (at least with staff) if she wanted to be.

[zoobie]

How much is good/too much? This would be easy to try and seems well worth a trial.

 

 

This too I will look for. If she allows hubby or FIL to assist in the bathroom when she is urinating (right now she won't), we could find out. Hubby would most likely be willing to try it on our next visit - and that might not be too far away.

You can use the "hat" in the toilet to catch it.

 

My grandmother likes musicals and gospel music. They have the Gaither Homecoming DVD running nonstop.

 

Agree with Katy about lying and distracting. Don't talk about leaving.

[creekland]

Lie and distract.  I can point out some verses in Galatians and Ephesians that will even make it biblical to lie and distract.  "We're not leaving, we're right here!"  Leave when she's watching Faux news or is napping.  If she realizes her DH isn't there, lie and say he ran out to the car to get something and will be right back.  Remember, moods last much longer than memories. Smile, act as if everything is fine, be happy, and she will be too.  When she's saying something racist or otherwise inappropriate, your version of smiling and saying, "Now  (name), you know that's not appropriate.  Don't say things like that!  Be good!"  The important part is to smile.  Then she might think that you're on her side even though you completely disagree with her. At any rate it will end the tirade without making her agitated.

 

We never talk about leaving with her, meaning we never bring up the subject.  She's always the one to bring it up over and over again.

 

If I try to tell her FIL is in the basement, bedroom, or outside, she goes to look.  My best bet is, "He ran out to the grocery store.  He'll be back in five minutes."  Lately I've been able to get away with basement and/or shed more though.  If she's super agitated, I definitely can't.

 

Not sure how she'll react to being corrected with her speech, but it could be worth a try in public as that's definitely when I feel the most frustrated with it and wish I could hang a big sign saying, "Alzheimers - please don't be offended - sorry!"  My in-laws go out to eat often and she, of course, has to comment about pretty much everyone she sees. She thinks she's being quiet about it, but... (sigh)  When we're visiting we try to cook for them, but that can make FIL feel badly that we're doing too much.  

 

My FIL just passed away last month after living with dementia for 19 years.   I can't help with all of your questions, but we found with FIL that we were giving him WAY too much information to process.   He couldn't process statements like, "We're going to go have dinner in a little while" or "We're going to go have dinner in an hour."    Instead, we'd just sit and watch TV with him until it was time to go, then announce, "It's time for dinner."   I would try to do something similar when discussing plans for leaving - give as little information as possible and only focus on one idea or concept at a time.

 

FIL would also re-wear clothes over and over.   He had lived in a regular assisted living facility when MIL was alive (they had an apartment together), and she made sure he bathed regularly and would swap his clothes out while he showered.   But after MIL passed away last year, we weren't sure he was bathing and he just put the same dirty clothes on over and over.   We moved him to memory care where the bathroom was down the hallway from his room and staff was available to help bathe, and that helped tremendously.   

 

We found that he was MUCH more receptive to someone "official" (i.e., staff at the memory care facility) telling him, "It's time to bathe," rather than family members.   Somehow that apron that the caregivers wore gave them more authority in his mind.    If your FIL would agree to let an outside caregiver start coming just to help with bathing every couple of days, that might diffuse the clothes situation with your MIL, and would give FIL a chance to wash her clothes while the caregiver was there.   Just a thought.

 

Bathing is one of those tasks that many dementia patients struggle with because it's so complicated and involves so many steps that must be followed in order.    Turning on the faucet, adjusting the temperature, changing water flow from tub to shower (sometimes), unbuttoning clothes, unzipping zippers, pulling down pants, taking off shoes - and more.   If you just think about how many tasks are involved in bathing, and imagine that you have the mental capacity to follow and comprehend instructions of a young toddler, it helps you understand why so many dementia patients struggle with it.

 

I also highly, highly recommend The 36 Hour Day.   I also recommend that you (actually, your DH, since these are his parents) continue talking to your FIL about the inevitability that at some point, he will no longer be able to care for her by himself.   You may have to rinse and repeat every time you see him or have a conversation with him, but it would help if your family had some idea of what that will look like when the time comes, rather than having to react to an emergency situation.   

 

We also only tell her about things "in the moment" when it's up to us.  This includes eating times, boat riding, and going anywhere.

 

She's the one who brings the rest up - including needing to know when we're going to leave and how long it takes us to get home.

 

I wish FIL would consider assistance for her.  Hubby does keep trying to convince him to consider even in-home care part time.

 

FTR, alzheimers is one condition I would put my own mother in a nursing home for. It's simply too hard to deal with by one person, and I've seen many cases where the stress makes the other partner ill and they both move into a nursing home, her with alzheimers, him with cancer or something similar.

 

I wonder if your FIL would consider moving into a nursing home with his wife.  That way he could be there with her every day to ensure her needs are being met, AND he wouldn't need to be the one up with her in the middle of the night.  Sometimes when one partner is fairly healthy and the other needs 24 hour care that is a temporary move.  In other cases even when the sick partner passes, the healthier one finds they like the nursing home.  Someone will fetch them whatever they like.  They don't need to cook or clean.  There are constant activities, coffee breaks, games, and church without going anywhere.  All the difficult aspects of life are handled and the easy, fun aspects are easier. If he's independent, he could still get away to his room and close the door when he wanted privacy or just to watch TV alone. He could make sure she's getting the care she needs (supervising, calling for help, teaching the nurses the way she likes things), and he could get enough rest to care for himself.

 

No, he would never consider it himself.  He's still very active - outdoors. He gardens. He hunts.  He takes care of their lawns (both places).  He's very active in a local community club (service organization).  He's even learned how to cook (some) now.  Taking care of MIL is another task he feels is his (marriage vows and all).  The rest of us see how it would be better for both of them if he got assistance.  He sees it as a weakness and shirking his duty.  He leaves her alone for some of his activities and we worry about it.  Just this past spring the police were called once when she freaked and went outside causing concern with the neighbors.  We were hoping that would induce change, but nothing has changed.  No laws were broken.

[JFSinIL]

Is there a maker's label on the shirt, too?

[hornblower]

One way to talk to the spouse about this is to say:

 

"if your spouse was living in a care home and was wearing dirty clothes or was able to get out and cause disturbances in the neighborhood or was being left alone unattended, would you accept it and think it's ok?" 

We've btdt with FIL who eventually was placed in a home by force - with police present.  

 

Dementia sucks. The person is a weird hollowed out shell of themselves; it's not just memory loss, their personality can totally change. They're really not always themselves anymore. 

It helped MIL to see that the care he was getting at home was nowhere near adequate & I was absolutely not beyond laying on the possible guilt of "what happens if he gets out and gets lost? What happens if he burns the apartment down?" 
 

[*LC]

Can you find the same style & color of shirt? If so, you could then have it (or more than one) personalized with the same design by a shop/person who monograms or embroiders.

I heard an expert in dementia speak who said, basically, the forbidden words are stored in a different part of the brain than regular speech. The part with the forbidden brain works longer than the normal part. That is why a grandmother who never cussed becomes the grandmother with dementia who "cusses like a sailor." That was the experts term, not mine.

[zoobie]

Is she on any anti-anxiety meds? My stepmom had to hide them in her mom's food, but there are things that help. Maybe a doctor would make a house call?

[zoobie]

Oh, and for the shirt--I'm going to guess Alfred Dunner. JCPenney and other places carry the brand. http://m.macys.com/shop/product/alfred-dunner-embroidered-short-sleeve-top?ID=2664449&pla_country=US&CAGPSPN=pla&CAWELAID=120156340007112447&CAAGID=19168009261&CATCI=pla-85532767981&catargetid=120156340003017380&cadevice=m&cm_mmc=Google_Womens_PLA-_-RTW+Womens_Women%27s+Tops+-+GS_Alfred+Dunner-_-73589327701_-_-_mkwid_snX702jT%7Cdm_73589327701%7C-%7CsnX702jT&gclid=CL_a3J2n4s0CFdgMgQod4ckFvQ

[creekland]

Is there a maker's label on the shirt, too?

 

Duh... I should have looked!  Ugh, that would have made the search so much easier...  

 

Now I'm wondering if I can get hubby to ask FIL to check.

 

Can you find the same style & color of shirt? If so, you could then have it (or more than one) personalized with the same design by a shop/person who monograms or embroiders.

I heard an expert in dementia speak who said, basically, the forbidden words are stored in a different part of the brain than regular speech. The part with the forbidden brain works longer than the normal part. That is why a grandmother who never cussed becomes the grandmother with dementia who "cusses like a sailor." That was the experts term, not mine.

 

Thank you for passing on this information.  I've learned to tolerate so much more from her than I ever thought would be possible, but it's really nice to know there's an actual mechanical reason it surfaces.

 

I'll keep the embroidering idea in mind if I can't find anything online or locally once I find out the label.

 

Is she on any anti-anxiety meds? My stepmom had to hide them in her mom's food, but there are things that help. Maybe a doctor would make a house call?

 

No, and I don't know what's available locally.  

 

Oh, and for the shirt--I'm going to guess Alfred Dunner. JCPenney and other places carry the brand. http://m.macys.com/shop/product/alfred-dunner-embroidered-short-sleeve-top?ID=2664449&pla_country=US&CAGPSPN=pla&CAWELAID=120156340007112447&CAAGID=19168009261&CATCI=pla-85532767981&catargetid=120156340003017380&cadevice=m&cm_mmc=Google_Womens_PLA-_-RTW+Womens_Women%27s+Tops+-+GS_Alfred+Dunner-_-73589327701_ -_-_mkwid_snX702jT%7Cdm_73589327701%7C-%7CsnX702jT&gclid=CL_a3J2n4s0CFdgMgQod4ckFvQ

 

Thanks for checking, but it's a long sleeved shirt and really reminds me of a light or medium weight sweatshirt,  Remember the kind that used to be popular a few years back?  It's like that.  Toward fall I was hoping they might have some available again somewhere, but I guess it would depend if they're in style enough or not.  We tried to find her a similar one last year (knowing she liked that style) and were unsuccessful.  It can't have glitter types of looks or faux stones as those drive her batty.  It has to be just an embroidered pic she likes and can talk about.

[hornblower]

 

Thanks for checking, but it's a long sleeved shirt and really reminds me of a light or medium weight sweatshirt,  Remember the kind that used to be popular a few years back?  It's like that.  Toward fall I was hoping they might have some available again somewhere, but I guess it would depend if they're in style enough or not.  We tried to find her a similar one last year (knowing she liked that style) and were unsuccessful.  It can't have glitter types of looks or faux stones as those drive her batty.  It has to be just an embroidered pic she likes and can talk about.

Is it kind of like this http://oldpueblotraders.blair.com/p/apparel/tops/long-sleeve/fleece-sweatshirt/pc/1207/c/1209/sc/1215/28076.uts ? 

 

 

[Kebo]

Would the shirt look something like this?  

http://www.customink.com/styles/independent-trading-juniors-lightweight-crewneck-sweatshirt/198700   This is a sweatshirt, but it is described as lightweight.  

 

You could purchase plain shirts and have custom embroidery done, as per the site linked above (there are over 20 images related to beagle alone!).  There are many different versions of more traditional long sleeve crew neck shirts too, without the band at the waist. 

 

Here is another possibility, though it has gems at the neckline:   https://smile.amazon.com/THIN-MORE-Crewneck-Pullover-Sweater/dp/B01AW76MRK/ref=sr_1_15?s=apparel&ie=UTF8&qid=1467931483&sr=1-15&nodeID=1258603011&keywords=crewneck+long+sleeve&refinements=p_n_size_browse-vebin%3A2343350011

 

Another thing to consider ... I remember reading years ago about how devoted some Alzheimer's patients were to baby dolls.  Do you think she would take to something like that? Or maybe a beagle instead :  https://smile.amazon.com/gp/product/B01DEMS8TK/ref=ox_sc_act_title_14?ie=UTF8&psc=1&smid=A1XB5G9K2GLS0A     

[Joules]

Kohls has some sweatshirts each year with different designs, like this one:

http://www.kohls.com/product/prd-2390965/womens-mccc-holiday-crewneck-sweatshirt.jsp

 

[StephanieZ]

One thought . . . Distraction is a key management tool for dealing with a distressed or uncooperative person with dementia. The clothing issue probably distracted her from the tooth issue. :) 

 

The tooth issue may or may not be actual/continuing. I'd probably try to get a good look at her teeth, and if it comes up again, for sure schedule a dental cleaning to check things out just in case. Continuous untreated dental pain would obviously be terrible. 

 

Re: the clothing. This is such a common issue. Some families just insist on changing clothes and deal with the fall out. Some families just go along with it, and suffer the embarrassment of a disheveled family member. I think the least *I'd* live with would be to insist on bathing 3-4 times a week and wash the clothes during the bath time, so at least she was getting clean clothes every other day. This issue may last forever. I don't know of a single magic fix. Fortunately, I never faced this particular challenge with my mom, but I did have to cajole/insist on every-other-day bathing at one point.

 

As soon as she gets out of the dirty clothes, they'd go straight into the washer . . . When she gets out of the bath, the clothes would still be IN the wash (wet/soapy), so I'd say, "Oh, yes, your favorite shirt is still in the wash, so let's wear this pretty new one until your favorite is out of the dryer!" Hopefully, that'd work OK. It's worth a try.

 

You could also buy a new shirt or two that you think she'll like, and wrap them up as presents, and make a production out of the gift giving. That might trigger her "polite" response to approve of the new present. Have them given by whoever is her favorite grandchild/son/etc to maximize the chance that she'll approve. 

 

These sorts of battles are really common with dementia. All sorts of tricks *can* help but there isn't one that always works. Sort of like negotiating with a toddler . . . 

 

Some times, "Let's get your clothes changed into something clean and pretty so we can go out for ice cream." Or, "After we get on a clean shirt, we can give your son, Bobby, a call on FaceTime!" works like a charm. Sometimes, it doesn't. Ugh.

 

My mom liked having her hair fixed nicely and liked a BATH more than a shower, so I tried to be sure to do the things she liked more than not . . .

 

If you haven't already read a book or two on dementia care, I'd encourage you to do it now. I read dozens. No epiphanies, but some reassurance and some practical helps.

 

Teepa Snow has some *great* videos. Some are on youtube. Super helpful for you. 

 

Distraction is a KEY, IMHO.

 

Also, don't *ask*, but *tell* . . . I.e., don't ask, "Would you like to take a bath?" Just say, "It's time for your bath now. After your bath, we'll fix your hair and have ice cream!" . . . Sometimes if they are confused (which happens easily with all those long words and long sentences we use), they say NO . . . So, keep things simple and short and positive. Speak slowly and sweetly. SMILE ALWAYS, because they can understand a smile/hug most times even if words confuse them.

 

If your FIL is doing all the care, at some point, he might agree to hiring a "bathing aide" to come 3x/wk expressly to help MIL get a bath and change clothes. This helped me immensely during my mom's later illness, as having the aide come who was there JUST to give her a bath sort of triggered cooperation, whereas the aides who were there for longer periods . . . she seemed to understand that she could distract THEM, lol. 

 

(((hugs))) and bless you for helping your MIL and FIL. This is such a terrible disease, and your help is priceless and precious. 

 

Sorry for my rambling. Hope one of these ideas helps.

[zoobie]

Duh... I should have looked! Ugh, that would have made the search so much easier...

 

Now I'm wondering if I can get hubby to ask FIL to check.

 

 

Thank you for passing on this information. I've learned to tolerate so much more from her than I ever thought would be possible, but it's really nice to know there's an actual mechanical reason it surfaces.

 

I'll keep the embroidering idea in mind if I can't find anything online or locally once I find out the label.

 

 

No, and I don't know what's available locally.

 

 

Thanks for checking, but it's a long sleeved shirt and really reminds me of a light or medium weight sweatshirt, Remember the kind that used to be popular a few years back? It's like that. Toward fall I was hoping they might have some available again somewhere, but I guess it would depend if they're in style enough or not. We tried to find her a similar one last year (knowing she liked that style) and were unsuccessful. It can't have glitter types of looks or faux stones as those drive her batty. It has to be just an embroidered pic she likes and can talk about.

That brand was what I was trying to link to. They have heavy weight shirts. It's the standard brand for grandmother attire. ;) If you go to that area of JCP or Macy's, they'll have other grandmotherly attire nearby.

[MotherGoose]

As an illustration of how the instruction thing works.... I once had a nursing home resident who would scream every morning at the top of her lungs. She HATED the compression stockings prescribed to her, but she had a history of blood clots so she had to wear them. Most staff would just put the stockings on as fast as possible to get the screaming over with. I'd pull out the stockings apologetically and say,"I'm sorry (her name), I know you hate these uncomfortable stockings because they pinch, but the doctor said you needed to wear them." She'd say, "Well then I guess we better put them on then." And happily let me put on the tight things without complaint. When it was her choice she was okay with it. And then she'd be happier for hours afterwards than she did on the mornings she would scream at some poor CNA or nurse who didn't know any better than to be polite and explain the situation first. She wouldn't remember the stockings incident 5 minutes later, mind you, but moods aren't in the same part of the brain that memory is in, so just that extra 30 seconds of conversation made the whole morning smoother.

I commend you all for doing a great job helping the residents. Here's my question: if you are elderly, in a nursing home (or even if you aren't elderly, but you have a condition that won't improve), why are you being forced to wear compression stockings? I've worn them and they aren't fun ( during pregnancy). If I'm elderly, and/ or sick, with no hope of returning to a normal life, I'd rather a blood clot take me out than lingering for years, potentially, in a home. I'm not just taking about avoiding the stockings, of course--they aren't that terrible, but I'm talking about avoiding all the other things that go along with living in a nursing home.

 

I'm definitely not in favor of assisted suicide, but I'm also not in favor of prolonging life for the sake of a beating heart. I get that if you are on staff there, you have to do what the doctor says. It seems like the family should realize that there are worse things than dying: like lingering for years, and being forced to put on the hated stockings each morning.

[Melissa in Australia]

Hugs

[Lang Syne Boardie]

I commend you all for doing a great job helping the residents. Here's my question: if you are elderly, in a nursing home (or even if you aren't elderly, but you have a condition that won't improve), why are you being forced to wear compression stockings? I've worn them and they aren't fun ( during pregnancy). If I'm elderly, and/ or sick, with no hope of returning to a normal life, I'd rather a blood clot take me out than lingering for years, potentially, in a home. I'm not just taking about avoiding the stockings, of course--they aren't that terrible, but I'm talking about avoiding all the other things that go along with living in a nursing home.

 

I'm definitely not in favor of assisted suicide, but I'm also not in favor of prolonging life for the sake of a beating heart. I get that if you are on staff there, you have to do what the doctor says. It seems like the family should realize that there are worse things than dying: like lingering for years, and being forced to put on the hated stockings each morning.

 

 

Blood clots don't always just take you out. They can also cause tremendous pain and suffering, even if they are caught in time and you're saved through medical care. Putting on the stockings is not worse than suffering from a DVT without actually dying of it.

 

Compression hose are not all the same; I'd get some help from a qualified physical therapist to try to find a more comfortable fit (that still meets the prescription for length and strength). My son wears a full length compression sock every day (prescription grade) and is comfortable, even while being very active as a college student. My 84yo grandmother wears knee high compression hose and is on blood thinners, and is comfortable. It took several attempts to find the right garment for each of these patients.

[Katy]

I commend you all for doing a great job helping the residents. Here's my question: if you are elderly, in a nursing home (or even if you aren't elderly, but you have a condition that won't improve), why are you being forced to wear compression stockings? I've worn them and they aren't fun ( during pregnancy). If I'm elderly, and/ or sick, with no hope of returning to a normal life, I'd rather a blood clot take me out than lingering for years, potentially, in a home. I'm not just taking about avoiding the stockings, of course--they aren't that terrible, but I'm talking about avoiding all the other things that go along with living in a nursing home.

 

I'm definitely not in favor of assisted suicide, but I'm also not in favor of prolonging life for the sake of a beating heart. I get that if you are on staff there, you have to do what the doctor says. It seems like the family should realize that there are worse things than dying: like lingering for years, and being forced to put on the hated stockings each morning.

As Tibbie said below, DVT's are horribly painful and there is no need to subject anyone to that.  Also, many of these decisions are family preference.  A nursing home administrator isn't making the decision, they're just making sure the family's wishes are carried out (as long as they are capable and compatible with the law).

 

There is NO QUESTION that sometimes a family member's interest IS in direct contrast with what is best for a resident however.  Sometimes families are not ready for the person to die, no matter how long they've had to prepare.  Someone can be dying from cancer and the family can demand they be sent to the hospital and resuscitated every time they're on the verge of death, and they are brought back only to live a little longer, in great pain.  In those cases, doctors and nurses can talk to the family about "only prolonging their pain," but unless the family agrees it doesn't matter.  Families get to make those decisions, not medical professionals.  The most you can possibly do is to rearrange your rounds to put that patient at the end of them instead of the beginning, and hope the extra 40ish minutes will be enough to make them beyond rescuing the next time you find them in that state.  But death isn't pretty or easy and in most cases takes much longer than 40 minutes or even a few hours, so that doesn't often work.

 

And furthermore, I'm not sure that it SHOULD be anyone's choice but the family's.  I don't like the idea of death panels.  I don't like that some doctors don't work as hard to save someone that will end up paralyzed after traumatic brain injury, because they (the doctor) wouldn't want to live like that, and they want those organs for transplant.  If a patient had a living will and made it clear to pull them off the machines and out of the ICU in the event they go into a coma, so be it.  But personally I think all life is valuable, even if a person isn't able to contribute to the GDP.

 

Blood clots don't always just take you out. They can also cause tremendous pain and suffering, even if they are caught in time and you're saved through medical care. Putting on the stockings is not worse than suffering from a DVT without actually dying of it.

 

Compression hose are not all the same; I'd get some help from a qualified physical therapist to try to find a more comfortable fit (that still meets the prescription for length and strength). My son wears a full length compression sock every day (prescription grade) and is comfortable, even while being very active as a college student. My 84yo grandmother wears knee high compression hose and is on blood thinners, and is comfortable. It took several attempts to find the right garment for each of these patients.

Tibbie is correct on both counts.  Sometimes though, it isn't that the hose are uncomfortable, it's the process of putting them on that is uncomfortable.  And that was the problem in the case I described above.  They were the very tightest grade, and no matter how careful you were, there was bound to be some level of snapping her skin accidentally in the process of putting them on.  Even if you completely wrapped her legs inside your hands.

[creekland]

Is it kind of like this http://oldpueblotraders.blair.com/p/apparel/tops/long-sleeve/fleece-sweatshirt/pc/1207/c/1209/sc/1215/28076.uts ? 

 

 

 

Yes, very much like that one, but not as large designs on them.  I asked hubby if he could get the label name from FIL later.

 

Would the shirt look something like this?  

http://www.customink.com/styles/independent-trading-juniors-lightweight-crewneck-sweatshirt/198700   This is a sweatshirt, but it is described as lightweight.  

 

...

 

Another thing to consider ... I remember reading years ago about how devoted some Alzheimer's patients were to baby dolls.  Do you think she would take to something like that? Or maybe a beagle instead :  https://smile.amazon.com/gp/product/B01DEMS8TK/ref=ox_sc_act_title_14?ie=UTF8&psc=1&smid=A1XB5G9K2GLS0A     

 

I love that top site!  I wonder why they don't have Navy Blue as a color option???  It makes me wonder how much the color matters to her, but right now, I think it matters a lot.  I haven't seen her in a different color in years.

 

 

Kohls has some sweatshirts each year with different designs, like this one:

http://www.kohls.com/product/prd-2390965/womens-mccc-holiday-crewneck-sweatshirt.jsp

 

There's a good chance the one she's wearing now came from Kohls - or Bon Ton.

 

One thought . . . Distraction is a key management tool for dealing with a distressed or uncooperative person with dementia. The clothing issue probably distracted her from the tooth issue. :)

 

The tooth issue may or may not be actual/continuing. I'd probably try to get a good look at her teeth, and if it comes up again, for sure schedule a dental cleaning to check things out just in case. Continuous untreated dental pain would obviously be terrible. 

 

...

 

These sorts of battles are really common with dementia. All sorts of tricks *can* help but there isn't one that always works. Sort of like negotiating with a toddler . . . 

 

Some times, "Let's get your clothes changed into something clean and pretty so we can go out for ice cream." Or, "After we get on a clean shirt, we can give your son, Bobby, a call on FaceTime!" works like a charm. Sometimes, it doesn't. Ugh.

 

...

 

If your FIL is doing all the care, at some point, he might agree to hiring a "bathing aide" to come 3x/wk expressly to help MIL get a bath and change clothes. This helped me immensely during my mom's later illness, as having the aide come who was there JUST to give her a bath sort of triggered cooperation, whereas the aides who were there for longer periods . . . she seemed to understand that she could distract THEM, lol. 

 

I'm pretty sure there is no actual issue with her tooth.  She's been eating fine - and complaining about other (real) pains as part of her regular conversation.  She hasn't been to a dentist since theirs retired (5 years ago).  How would FIL even find a dentist willing to work with someone uncooperative?

 

We've definitely discovered that some times things work and some times they don't.  With humor working somewhat this past time, I plan to try continuing that to try to improve her mood.

 

I'd love it if FIL were to get an aide or two to come in periodically.  How would he go about finding a good one?  He doesn't know.  He's heard horror stories. Perhaps if we could do some legwork for him, that would help.  They live somewhat near Richmond, VA.  Obviously, I don't want to give exact details, but... just in case someone knows something...

 

And furthermore, I'm not sure that it SHOULD be anyone's choice but the family's.  

 

I think people themselves should be able to have a bit of a say in it.  I've no problem at all with those who choose to live until their natural (or assisted) dying breath, but I don't think anyone should be forced to, whether with Alzheimers or any other health issue they don't care to live with.  My elderly grandma had to endure between 2 and 3 years in a nursing home with no hope of getting better.  She asked to be allowed to die many times - and she was of sound mind.  No.  That wasn't allowed.  Tough luck.  Stay there in that bed and wheelchair until your body finally gives out.

 

We are kinder to our pets (as a nation) than we are to humans.

[StephanieZ]

By far, the best aides I hired were via hospice and one private pay person (who came personally recommended and had lots of experience). The hospice aides were *fantastic*, so when/if your MIL enters hospice care, I highly advise taking advantage of their bathing aides. 

 

Finding a great private duty aide is *really* hard. I went through three agencies in under 2 years, and although a few of the aides I had were good, none were great, and some were really awful. (None were abusive or mean, but some were just dead weight.) The worst part was how *none* of them lasted more than a couple months. It's a terribly low paid industry, so even though I was paying $20/hr, those aides were pretty much making within a dollar or two of minimum wage. That's why the private duty person I found was great. I paid $14/hr (plus paid time off and 3 months promised & delivered severance when my mom passed away) and that was 50% more than she (10+ years experience with same agency . . .) made working for her regular agency job. It was cheaper (a little) for me, and much better for her. So, anyway, if you are willing to offer enough hours (say 15-20/wk at least) to make it "worth their while" you might be able to advertise for and find a great private duty person. You just have to go through the hoops to make it legal (pay taxes, etc.) and pay well enough to make it more lucrative than their day job. (I'd suggest 14-16/hr in most areas to easily surpass going pay rates at agencies.) Anyway, if you have any experience hiring people (I did/do), then that's a great way to go. Other than that, you just have to shop around through all the local agencies . . . There will be plenty . . . most talk a great game. Delivery is not so good. I think having a family member present (and/or security cameras as well) makes it pretty assured you won't have someone being abusive or neglectful, but whether they will be fun/sweet/loving/effective is another ball of wax. 

 

You can ask her doctor for recommendations of agencies and/or private duty people . . .

 

So far as a dentist, my family has a long standing relationship with a small dental office and they were great with my mom. Mom wasn't uncooperative, though, just impaired. Another family I know used the local dental school (at our local university) for their parent's care, as they had the resources to deal with the complex issues. Dental pain can be severe, and oral hygiene is a huge issue with dementia. I ramped up Mom's routine exams to every 4 months as her dementia was impairing her oral hygiene, just to keep ahead of issues. I'd ask whoever your FIL now sees who they recommend, as they likely know what resources are available in the area. Noncooperative patients certainly are not rare, with mentally disabled people, etc. Everyone needs dental care . . . The patient can be medicated/sedated, etc. if needed. 

[Laurie4b]

I might be able to once hubby is here - more specifically - his computer is since that's where we keep the photos.  We don't take them often now as her looks aren't what they were and everyone wants to remember her as she was.

 

In short, her favorite is a pull over navy blue crew neck long sleeved shirt with red roses on the front in the heart area.  It has a band around the bottom like many sweatshirts have, but it's not as heavy as many sweatshirts.  

 

In the winter she wears one with a snowman instead of the red roses.  Both pics have been important to her.  Now she likes to show off her flowers.  She might enjoy one with a beagle on it if I could ever find one, but the overall shirt must be navy blue.  That's her color.

 

She's seems to not recognize seasons now, so we might be able to swap the snowman for the flowers come to think of it...

 

 

 

It would be really easy for someone who paints to duplicate the shirts and you'd just have to find plain navy shirts as the background.

 

I've done painting on sweatshirts and T-shirts before and acrylic paint works well and doesn't wash off. It's less expensive than fabric paint as well. 

[Laurie4b]

 

Happy?  Some of these folks have times when they're happy?  Seriously?  All stories, all experiences, everyone she sees - except her own personal family - it's all gloom and doom and people out to get her (rob, maim, etc).

 

 

 

You might try playing or singing songs from her youth (childhood through young adulthood) that she liked. That engages many people with dementia and they are happy during the music time. I've read that while they may not recall what made them happy, that the emotion lasts for some number of hours beyond the actual event. Worth a try, anyway. 

[creekland]

You might try playing or singing songs from her youth (childhood through young adulthood) that she liked. That engages many people with dementia and they are happy during the music time. I've read that while they may not recall what made them happy, that the emotion lasts for some number of hours beyond the actual event. Worth a try, anyway. 

 

That's a really good suggestion.  I'll have to check with hubby to see if he knows what she likes/d?  I don't recall music ever being on in their house - radio or otherwise - and I know she didn't go to dances or such things (father was a preacher), but maybe there's something...

 

Right now she sings along with some of the TV commercials when they're on.   :ack2: