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at home alone with full time aides or assisted living with memory care
debarde
Posted: Friday, January 13, 2012 10:56 AM
Joined: 1/13/2012
Posts: 15


here is my challenge - My mother has always been active throughout her life. She loves to be around people, watch people, engage with people.  My sister and I disagree that my Mom is now home alone with aides - $13000 a month out of my mother's assets.  The aides do not engage Mom, they watch her, they cannot take her out of the home, they cannot dispense medicine.  She is isolated - although if you ask her if she wants to live in her home she says yes although when you ask her if she wants to live home with aides she says loudly no. She often says she feels like a prisoner.  I want Mom to move to a nearby beautiful assisted living with memory care where she can have the mental stimulation she needs, be able to engage with people and have physical activity.  I take Mom out at least once a week (after scheduling with the aides) to a senior center with an activity- she loves it.  My sister is legally blocking Mom from going to an assisted living with memory care. 

I would like some guidance that my now, legal challenge, is not unreasonable.

 



MLB61
Posted: Friday, January 13, 2012 11:29 AM
Joined: 12/2/2011
Posts: 726


If your sister is POA and you can't convince her that your mother should move, then you probably don't have too many options.  You can't move your mom against her will if you aren't POA.  Is your mother still competent enough to make the decision?  It's a long shot, but do you think you could convince your mother to move?  If you really want to fight your sister, you could petition for guardianship.  Sounds like something to discuss with an elder law attorney.
JAB
Posted: Friday, January 13, 2012 1:36 PM
Joined: 11/30/2011
Posts: 740


Hi, debarde, welcome to the forum.

 

OK, so is MLB's assumption correct, that your sister has DPOA for healthcare matters and financial matters?  And do you have copies of the documents, so you know for sure what powers have been given to her and when and how they were triggered?

 

You refer to your challenge as "now" being "legal".  Have you already taken some sort of legal steps?

 

Have you investigated other ways to help your mother get the social stimulation she needs, such as Adult Day Care, preferably on a daily basis?  Or have you suggested that your sister find aides who are properly trained so that they do engage your mother (it's just ridiculous that all they do is watch her) and can and will take your mother out and about, and deal with her meds, etc?

 

Have you considered trying mediation?  Sometimes, an outsider can get people to see things in a whole different light. This article talks about using a professional mediator for situations such as yours, and also has links for finding mediators in your area:
http://www.npr.org/templates/story/story.php?storyId=102972077 

 

Guardianship (or conservatorship -- what it's called depends on where you live) may be the only way to "legally challenge" your sister.  However, I suspect that you'd have a hard time winning your petition to the court if your mother gave your sister DPOA and you cannot demonstrate that what she is doing is actually harmful to your mother ... especially if your mother will state that she wants to stay in her home.  You'd end up spending a boatload of money, and run the risk of worsening the friction with your sister to the point you may not be able to help your mother at all.


debarde
Posted: Friday, January 13, 2012 4:16 PM
Joined: 1/13/2012
Posts: 15


I have petitioned for guardianship since the power of attorney gives us equal powers.  We have been to two mediations and are heading to court.  My sister will not commit to taking my Mom anywhere, will not let a neutral care manager come in to help with the decision nor will she let me assume my Mom's care decisions.  The lesson here is never have only two POA's.  My Mom soo enjoys going out when I am able to get the opportunity to do so but I know she would truly enjoy a setting that would have her be "down the hall" from activities.  I have also gotten an Physician's Affidavit that states Mom is unable to make such decisions.  My hope after this experience is that the court appoints a neutral care manager who understands that just because you have ALZ does not mean you cannot enjoy "living in the moment".  When we play cards, do physical activities and when Mom is engaged with people she is so much more clear than when she is sitting all day and falling asleep.  I am making every step to be make sure my sons know my wishes.  So many in Mom's generation assume that every elder community is a dreaded nursing home.  In our state if Mom falls and cannot walk around for more than 14 days assisted living no longer becomes a choice only a nursing home.
jfkoc
Posted: Friday, January 13, 2012 4:30 PM
Joined: 12/4/2011
Posts: 17562


Just coming on to encourage you...your Mom needs exactly what you think she needs.

 

A thought...if good placement is cheaper would your sister be interested?


jfkoc
Posted: Friday, January 13, 2012 4:31 PM
Joined: 12/4/2011
Posts: 17562


another thought...is your sister older? I know my older siblings think they know far more than I. LOL
debarde
Posted: Friday, January 13, 2012 6:13 PM
Joined: 1/13/2012
Posts: 15


my sister is older -she has no family just an older pet - she does not work outside the home.  I think my mother's diagnosis has somehow made her a bit irrational.  My sister never liked any changes so she is having difficulty with this.The assisted living community with memory care is half the cost of the aides. That does not make a difference to my sister but my mother will run out of funds soon.

 

I want my Mom to enjoy the time she can - I treasure so many moments with her now and she still wants to engage and enjoy -I will fight to give her that. Thank you for reassuring me the fight is worth it.  So many times you hear that ALZ patients retreat into themselves and do not want to go anywhere. We are not there yet.

I read so much research showing what a huge difference physical activity and mental stimulation makes I see it with my Mom. 


KatK4
Posted: Friday, January 13, 2012 6:25 PM
Joined: 12/2/2011
Posts: 100


Sounds like your sister is the one who's in need of help.  She really isn't thinking straight.

 

Has she any plans for where your Mom will live when the $ runs out?


debarde
Posted: Friday, January 13, 2012 6:30 PM
Joined: 1/13/2012
Posts: 15


no plans - just wants Mom to stay in her home.  My Mom only agrees about being in her home if she can be there without the aides. My sister ignores that part.
JAB
Posted: Friday, January 13, 2012 6:31 PM
Joined: 11/30/2011
Posts: 740


Well, your instincts certainly are correct.  In fact, socialization, exercise, and learning new things/having new experiences are thought to slow down the progression of the symptoms.

 

I am so sorry it has gotten to this point.  Your sister's behavior does not sound entirely rational.  ((((hugs))))


libsue
Posted: Friday, January 13, 2012 6:48 PM
Joined: 12/23/2011
Posts: 15


I just recently had to make this decision.  My mother was adamant about staying in her home but would "fire" anyone I hired to come in to be with her.  She did allow my brother's ex-wife to come and stay 4 days a week but that left 3 days a week that we would have had to hire someone.   Some people would stop in occasionally, but other than that, she never went out of the house and got to the point she refused to leave the house.  She was not eating properly and was not engaged in any way.  The house was a split level and I was always concerned that she would fall down the stairs and break her hip.  My brother and my daughter live in MD 90 minutes away and could not monitor what was going on.

 

  I got guardianship of her a week ago and moved her with me to FL to an ALF here which is 2 miles from me.  She is extremely angry at me and is creating a lot of havoc there.  I've heard some people have a harder time adjusting than others.  I really felt that I had no option but to move her out of the house so she would safe and have a better quality of life.  I wish you the best of luck.


debarde
Posted: Friday, January 13, 2012 7:20 PM
Joined: 1/13/2012
Posts: 15


My understanding from a number of geriatric nurses is that it takes several weeks for someone to acclimated to a new setting.  Hopefully this adjustment will happen quickly for you and your Mom.  I know the transition can be difficult but it might be easier now rather than waiting much longer.  Hopefully she may grow to enjoy the activities.
rose_ro
Posted: Saturday, January 14, 2012 1:24 AM
Joined: 12/21/2011
Posts: 2431


debarde wrote:

here is my challenge - My mother has always been active throughout her life. She loves to be around people, watch people, engage with people.  My sister and I disagree that my Mom is now home alone with aides - $13000 a month out of my mother's assets.  The aides do not engage Mom, they watch her, they cannot take her out of the home, they cannot dispense medicine.  She is isolated - although if you ask her if she wants to live in her home she says yes although when you ask her if she wants to live home with aides she says loudly no. She often says she feels like a prisoner.  I want Mom to move to a nearby beautiful assisted living with memory care where she can have the mental stimulation she needs, be able to engage with people and have physical activity.  I take Mom out at least once a week (after scheduling with the aides) to a senior center with an activity- she loves it.  My sister is legally blocking Mom from going to an assisted living with memory care. 

I would like some guidance that my now, legal challenge, is not unreasonable.

 


 

     I wo

                I would do everything in my power to sweetly convert sister.  I was kind of against the idea of my mom living in a care place, and didn't want aides for the reasons you mention above.

 

My mom is doing so much better, and really so is my father.

 

you are right in what you see as helping your mom. Are you involved in working with her doctor?  I'd work on that level.

 

but I'd do whatever I could to convert your sister, and if not, or - maybe at the same time - talk to a legal advisor.


rose_ro
Posted: Saturday, January 14, 2012 1:26 AM
Joined: 12/21/2011
Posts: 2431


jfkoc wrote:
another thought...is your sister older? I know my older siblings think they know far more than I. LOL

   Well, we doooo!  lol

 

In our case, it's the ounger ones who KNOW they know more.  And it's SO annoying!


rose_ro
Posted: Saturday, January 14, 2012 1:31 AM
Joined: 12/21/2011
Posts: 2431


debarde wrote:

my sister is older -she has no family just an older pet - she does not work outside the home.  I think my mother's diagnosis has somehow made her a bit irrational.  My sister never liked any changes so she is having difficulty with this.The assisted living community with memory care is half the cost of the aides. That does not make a difference to my sister but my mother will run out of funds soon.

 

I want my Mom to enjoy the time she can - I treasure so many moments with her now and she still wants to engage and enjoy -I will fight to give her that. Thank you for reassuring me the fight is worth it.  So many times you hear that ALZ patients retreat into themselves and do not want to go anywhere. We are not there yet.

I read so much research showing what a huge difference physical activity and mental stimulation makes I see it with my Mom. 


  Have you gotten along with your sister before?

 

I would try to figure out a positive way to motivate your sister.  Have you seen a place you like (I think you said you did)...has your sister seen this place?

 

My heart was broken when my mom had all these problems.  I'm not even sure if I was thinking right.  Family didn't help.  I wanted my mom to have my help, and she did.

 

But I couldn't get people to help me get the things I wanted for my mom.  This care place has them in spades.

 

People in my family are probably shocked that I made the ''decision'' for my mom to go to this place (and it was because she fell and it made me feel terrible).

 

If my sister fought me to the death, i would just fight hard.  My sister (younger) was so convinced that she was right...I still don't trust her motivations, to be honest, but the point is moot now. 

 

My mom's life is MUCH better.  I had this fear in my head that my mom would be in a chair all day with  her mouth open, dying in a sense.

 

This place has so many events.  I am actually the one fighting for my mom to be there   Not against my family, but against the general craziness that can happen.  I want my mom to be there!  The moment I saw it, though, I wanted her to be there.  Is it hard for her?  Yes.  But at the same time, she's quite happy!

 

Falling is a terrible thing for older folks.  I WOULD have moved Mom if I had really thought she would fall! 

 

oh, what I meant to say was, this place has a lot of things open in a way to the ''general public.'' Does yours?  Could your sister and mom go with  you to one or some?

 

They all should have people who help encourage people to go there, so research that.

 

 


rose_ro
Posted: Saturday, January 14, 2012 1:37 AM
Joined: 12/21/2011
Posts: 2431


Wait!  $ 13,000 a month?  Wow.

 

Just caught that.  I would try to petition things because your sister is not making good use of your mom's money.

 

She could stay in a top rate place, get great care, food, and many things - and still have money left over, esp in some areas of the country.

 

Ok, try the soft approach, but then go for the hard approach and don't let the ding dong - sorry - sister!  use your mom's money this way. 

 

What does her doctor say?


rose_ro
Posted: Saturday, January 14, 2012 2:06 AM
Joined: 12/21/2011
Posts: 2431


This article might be helfpul.

 

http://www.nytimes.com/2011/01/01/health/01care.html?pagewanted=all


debarde
Posted: Saturday, January 14, 2012 7:56 AM
Joined: 1/13/2012
Posts: 15


My sister and I were very, very close - however my sister never interacted with many people, is a bit of a stay at home person.  I was the one she counted on - she was always good to my sons - but always on her terms.  She is no longer able to discuss anything -only through her lawyer -  she was the one who first retained a lawyer - would not agree to any mediation points.  The mediator even said she seemed unreasonable.  We are heading to court - huge financial cost -from savings I do not have- my sister has more of the financial resources.  My Mother's funds are depleting quickly. 

I have had Mom seen by a Geriatric specialist and a neuropsychologist both believe she has "probable" ALZ and would most likely be better off in a Assisted Living.  Mom's medical Doctor refused to sign the Physicians Affidavit - did not want to get involved. 


debarde
Posted: Saturday, January 14, 2012 9:08 AM
Joined: 1/13/2012
Posts: 15


Excellent article - thank you.  It is so fascinating what comforts each person - my Mom loves to prepare a salad, chopping vegetables, cleaning a bit, folding clothes - these mundane tasks are comforting to her.  My Mom loves watching people (out and about) loves seeing pets and babies.  It is such a thrill to see her excitement at these things.
rose_ro
Posted: Saturday, January 14, 2012 10:07 AM
Joined: 12/21/2011
Posts: 2431


debarde wrote:
Excellent article - thank you.  It is so fascinating what comforts each person - my Mom loves to prepare a salad, chopping vegetables, cleaning a bit, folding clothes - these mundane tasks are comforting to her.  My Mom loves watching people (out and about) loves seeing pets and babies.  It is such a thrill to see her excitement at these things.

  You're welcome, I really liked re-reading it.

 

some of the AL living places I've seen don't have those things to do, but they do have other things.  My mom is loving some of the activities...

 

She is liking the socialization, and other things that these places can have.  SO interesting that your sister is not big on socializing.

 

In some ways, I didn't want to ''let go'' of my mom.  I wonder if that's what she's thinking?  On the other hand, some people really are just ornery!

 

i wonder, too, if your sister could have her own cognition issues?  I hate to say it, but it sounds like it to me.  I could be wrong, of course.

 

I saw a memory unit and I was told that not only were the parents there, but a daughter, too. 

 

One of the first signs some people can see with dementia is a recklessness with money.  I wonder about your sister, if she's not normally that reckless with money?

 

 


skericheri
Posted: Saturday, January 14, 2012 11:02 AM
Joined: 12/10/2011
Posts: 287


Debard---It is such a shame that your sister is being so inflexible as well as refusing to communicate with you without a lawyer.  The latter kind of raises my suspicions about her reasons for keeping your mother at home..

 

Have you had your mother evaluated by the  AL facility?  Their base price had a tendency to increase as the level of care increases.  Help in taking meds one of the reasons for justifying an increase.

 

I don’t know what normal rates are in your area

 

Here are some average nationwide rates taken from the following link on the Place For Mom site. 

http://www.ourparents.com/articles/comparing_costs_in_home_care_nursing_homes_and_assisted_living_and_adult_day_care 

 

Nursing Home-- Average cost can exceed $70,000 a year for a semi private room. A break down of the daily charges is $194 per day.                      

 

Assisted living Facility-- Average for living in an assisted living facility rose to nearly $39,000 per year. This is an average daily charge of just over $100 per day

 

 

The site limitations would not permit me to list the hourly rates for various levels of in home care.  Please check the link above.

 

 

I assume that the hourly rate is for an individual employed through an. agency. and does not represent discounted rates for around the clock care and that translates into lower rates.  It is also possible to get different levels of care for each shift.  The caregiver service (Visiting Angels) would (after the completion of paperwork) allow the caregiver to transport the individual to places.

 

It sounds as if your mother would be happiest in an AL.  facility…but…I suspect that she will complain about feeling as if she was in prison no matter where she was. 

 

Are there any micro communities (places with a very limited number of residents (usually 6 or under)?  They often cost lest than large AL facilities and usually charge less.   


skericheri
Posted: Saturday, January 14, 2012 11:12 AM
Joined: 12/10/2011
Posts: 287


 

Debrade---It is such a shame that your sister is inflexible and also refuses to discuss the matter without going through a lowyer.  I find the latter suspicious and cannot help but question her motivation for keeping your mother at home.

 

Have you had your mother evaluated by the  AL facility?  Their base price had a tendency to increase as the level of care increases.  Help in taking meds is one of the reasons for justifying an increase.

 

I don’t know what normal rates are in your area

 

Here are some average nationwide rates taken from the following link on the Place For Mom site.   

http://www.ourparents.com/articles/comparing_costs_in_home_care_nursing_homes_and_assisted_living_and_adult_day_care 

 

Nursing Home-- Average cost can exceed $70,000 a year for a semi private room. A break down of the daily charges is $194 per day.                       

 

Assisted living Facility-- Average for living in an assisted living facility rose to nearly $39,000 per year. This is an average daily charge of just over $100 per day

 

The rates for in home care at various levels got scrambled when I attempted to post them here.  Please check the above link.


 

I assume that the hourly rate is for an individual employed through an. agency. and does not represent discounted rates for around the clock care and that translates into lower rates.  It is also possible to get different levels of care for each shift.  The caregiver service (Visiting Angels) would (after the completion of paperwork) allow the caregiver to transport the individual to places.

 

It sounds as if your mother would be happiest in an AL.  facility…but…I suspect that she will complain about feeling as if she was in prison no matter where she was.   

 

Are there any micro communities (places with a very limited number of residents (usually 6 or under)?  They often cost lest than large AL facilities and usually charge less.    


debarde
Posted: Saturday, January 14, 2012 1:47 PM
Joined: 1/13/2012
Posts: 15


Thank you for your input.  The community I want my Mom to move into to is a limited residence memory care assisted living - no nursing home attachment.  Cost with morning and evening med and dressing care for a small one bed room unit is $5000 a month.  It is a beautiful complex and has numerous activities that I am sure Mom could/would enjoy.   I am even taking Mom to the AL for some activities which they are allowing us to do at this point.  The sad lesson to my situation is that my Mom has expressed she would love to try such a setting - that is how this all started. I wanted my Mom to do a trial stay at Assisted Living (30 days no commitment) one year ago - which set my sister into legal mode.

I guess I keep asking myself is the battle worth it. I even said to my Mom I know you don't want to be with aides all day  - she responds loudly NO I do not.  She says "I need to be engaged with people - I feel isolated".  Is she saying that to my sister, I don't know. 


HalsAngel
Posted: Saturday, January 14, 2012 2:28 PM
Joined: 12/19/2011
Posts: 11


I am so sorry you are having to deal with this! I pray it will work out soon....for mom's sake!!

 

I did notread all the posts, so this may have been mentioned. Most assisted living places do respite care too. Perhaps your sister might agree to allow mom to go for a short visit to really see how she would do. Of course, your sister would also need to observe mom to see how she would enjoy it too.

 

God Bless ya!


jfkoc
Posted: Saturday, January 14, 2012 2:31 PM
Joined: 12/4/2011
Posts: 17562


Wow...I would think about getting an honest conversation with mom on tape!!!
debarde
Posted: Saturday, January 14, 2012 2:42 PM
Joined: 1/13/2012
Posts: 15


I have---twice.  and many voicemail recordings.  It does not resonate. Same response - Mom wants to stay in her house.  No other reason.  Exhausting.  I appreciate the validation some have offered.  My only hope is that a neutral care manager can be appointed.  My next challenge would be to find a care manager who understand that you do not ask dementia patients - what do you want to do? - my mother would say live in her home (she thinks that means alone) she cannot live alone - it means living with aides. Interviewing some care management companies very few understand dementia, lack of understanding about ALZ, lack of understanding between the differences between nursing homes and assisted living with trained memory care staff.  Lack of understanding that ALZ patients should be mentally, physically and socially engaged.  I am seeing a huge difference in my Mother's case whenever I take her out to the Senior Center and do activities with her and when she talks to others her age.
rose_ro
Posted: Saturday, January 14, 2012 10:49 PM
Joined: 12/21/2011
Posts: 2431


debarde wrote:

Thank you for your input.  The community I want my Mom to move into to is a limited residence memory care assisted living - no nursing home attachment.  Cost with morning and evening med and dressing care for a small one bed room unit is $5000 a month.  It is a beautiful complex and has numerous activities that I am sure Mom could/would enjoy.   I am even taking Mom to the AL for some activities which they are allowing us to do at this point.  The sad lesson to my situation is that my Mom has expressed she would love to try such a setting - that is how this all started. I wanted my Mom to do a trial stay at Assisted Living (30 days no commitment) one year ago - which set my sister into legal mode.

I guess I keep asking myself is the battle worth it. I even said to my Mom I know you don't want to be with aides all day  - she responds loudly NO I do not.  She says "I need to be engaged with people - I feel isolated".  Is she saying that to my sister, I don't know. 


  Sounds great, how can I get my mom there? 

 

Is there a social worker there who could help you in any way?  Sorry if I missed that...


jfkoc
Posted: Sunday, January 15, 2012 10:02 AM
Joined: 12/4/2011
Posts: 17562


I wasfocusing on your mother saying she felt isolated. I feel so sorry for her and you with your struggle to meet the balance between her wishes and needs. 

 

If you could just figure out your sister's reasoning. Often the motivation is money but that does not seem to be the case here.

 

Please keep us up to date.


debarde
Posted: Sunday, January 15, 2012 11:13 AM
Joined: 1/13/2012
Posts: 15


Thank you for sharing your experience.  I am confident my Mom would be right in the middle of things at an assisted living since she loves to be around people.  I can imagine me calling her and her saying "sorry got to go I am joining the Sit and Be Fit Class".  She used to always attend this type of class and she still enjoys the senior chair yoga class we currently go to (although she can not remember going to the class).  My sister went once to the Sr. Center - with an aide and my Mom and did not stay for lunch or any activity.  I truly wish I understood my sister's reasoning.  No one can get anything out of my sister other than Mom wants to stay in her own home.  I know there will be adjustment period, I know it will not be perfect, I know the care will not be perfect.  But at least the staff at an AL would have management oversight more than my Mom's situation.
MLB61
Posted: Sunday, January 15, 2012 11:18 AM
Joined: 12/2/2011
Posts: 726


Maybe your sister will lose her identity as "caregiver" if your mother moves to an ALF.  You can assure her that you can be as involved as you want even if your mother is in an ALF.
debarde
Posted: Sunday, January 15, 2012 1:23 PM
Joined: 1/13/2012
Posts: 15


I wish it was that simple - My sister is more of a prison Warden then a caregiver.  My sister calls my mother constantly but only stops in to bring her take-out meals (my sister does not cook) from 5  to 8-pm for 5 nights a week when the aides are not there (out of 24 hrs a day). I have my Mom over at least two nights a week for dinner since I know then she is having at least two healthy evening meals a week.  When my sister visits my mother they watch tv together and then my sister leaves.   My sister will also take my Mom to the Doctors on occasion with an aide accompanying her. My sister has never helped my Mother shower, wash/dry her hair, helped her get changed. 

 

 My biggest concern is that when the trial is over (she wants my mother to attend the trial!) I believe the judge will appoint an independent care manager and my concern is that the care manager will not be able to get beyond my sister's mantra "mom wants to stay in her home"....... I hope any geriatric care manager will learn from my experience to take all things into consideration not just what the patient says she wants when given limited information on their choices.  Explain the experience she would have not the title of the location.ex., "facility", "nursing home" - these names scare many in the older generation. AL communities need a better public relations plan.

This decision would be a simple one if my sister were not involved as co-power of attorney. 

 

 



jfkoc
Posted: Sunday, January 15, 2012 6:14 PM
Joined: 12/4/2011
Posts: 17562


Just wondering why, since you both are signed on as POA, your sister feels she has more say so.
debarde
Posted: Sunday, January 15, 2012 6:25 PM
Joined: 1/13/2012
Posts: 15


In order for any decisions to go forward we must both agree- it is the way the POA was written.  Since my Mother is already in her home and cannot live alone she remains with the aides - for my Mom to move to an AL we both must sign.
jfkoc
Posted: Monday, January 16, 2012 10:28 AM
Joined: 12/4/2011
Posts: 17562


Hmmm. So it is status quo by defalut? So you would actually have to agree on everything from switching  Drs, to picking a caregiver to oopeningup a new bank account.

 

Who actually pays the aids and takes care of the other expenses? 13K is really a lot for someone who can not even dispense meds.  It is triple what HomeInstead charges!!!


debarde
Posted: Monday, January 16, 2012 12:20 PM
Joined: 1/13/2012
Posts: 15


The payment for aides is automatically taken out of my mother's account - via my sister's authorization.  I handle all other bill payments.  $13,000 is ridiculous (21 hrs a day) and I hope the judge sees it that way, but we are only expecting the judge to appoint an independent care manager who would make care decision -  who I hope sees it that way..