Re: Assisted Living vs. Nursing Home

[Guest guest]

We, as caregivers, are so very hard on ourselves. It sounds like you are doing

the best you can for your dad. When my mom was first diagnosed, we tried having

her live with us, using the services of a home health nurse during the day. It

did not take us long to realize she needed care and supervision 24 hrs every

day. Yes, she is independent a lot of the time, but we never know when she might

need more care and supervision, given the extreme fluctuations in her congnition

and physical abilities. Moving her to a Nursing Home was the best option. It

wasn't easy, though. I cried every time I left her for the day for at least the

first month--probably longer. It is normal for your dad to want to live on his

own - most people do - you have to consider what is best for him. When my mom

complains about the Nursing Home we reassure her that we understand and then we

say something positive about the care she receives there. You mentioned that

your dad is not a

social person. My mom is very social, but LBD is changing that. When she wants

to be left alone, she has the option of staying in her room with the door

closed. She knows she does not have to participate in the activities going on,

but she also knows she can if she wishes.

 

I hope you have some good support for yourself. This is a tough situation. Bless

you for taking such good care of your dad. Come to this group for support,

answers, and reassurance. Connection with these good folks saved my life 2 years

ago and I have learned much from the posts, links, and files found within this

group.

 

Warmly, Katy--daughter to Jill, age 71

[Guest guest]

So much of what you say about your Dad's falls, the episodes that he doesn't

remember, and his wanting to take care of himself, remind me totally of my Mom

before we placed her in the nursing home/memory care unit.  I totally

questioned my decision for months afterwards.  I was my Mom's caregiver in my

home with caregivers while I worked, no other family help as my brother lives in

Colorado and could not help with the day to day care.  But now a year and a

half later I do know in my head (sometimes not my heart) that my brother and I

definitely made the right decision.  Thank goodness he was supportive.  See my

other post today about " something good " and hang in there because in time you

will start to question your decision less.  It still amazes me how many of our

stories are so much alike.

Subject: Assisted Living vs. Nursing Home

To: LBDcaregivers

Date: Tuesday, February 22, 2011, 9:51 AM

 

After my mother died in November of 2009, my father moved in with us. He

had what I call three significant episodes of confusion/hallucinations etc

during the 9 months he lived with us and was eventually diagnosed with Lewy Body

Dementia. His last episode lasted 5 weeks and I moved him into a dementia unit

of a local nursing home. As in his other two episodes, he has now popped back

to his more " normal " self. Not normal as being able to live by himself because

of excessive sleeping, confusion upon waking and many, many falls one ending

with an injury that blinded him in one eye (fall occurring in the hospital while

he was being tested for change in mental condition). I feel nursing home is the

best place for him (given that I am not willing to care for him in my home after

that last long episode). I feel with his frequency of episodes and falls,

assisted living would not be appropriate. It would be OK when he was in his

" normal " stage but I

feel he would be asked to leave when an " episode " occurred or if he fell

repeatedly. He has already been in three nursing homes (two basically for rehab

after events) and moved to my home in the last year. I feel I've found a place

where he can stay and be taken care of for the rest of his life. The problem is

he hates it there. He doesn't even remember any of his episodes. After every

visit, I fight with myself over the decision to move him there. He is not a

social person. He just wants to live alone in an apartment close to stores that

he can walk or " bike " to. Police started paperwork to take away his license

after an accident shortly after my mother passed away. Do I have him in the

right place? Did I do the right thing? Should I be letting him make the

decision on where to live? I really don't think so. How can someone who can't

remember these episodes make a good decision. He wants to get a helmet that he

can wear so that he doesn't

injure his head when he falls down. That is how he justified living alone when

I ask what he will do if he falls. He recently fell in the nursing home and had

eight stitches under the eyebrow of his good eye. I have such terrible guilt

but when I rethink the decision as I do about every other hour, I come up with

the same solution. He has been in the nursing home about 10 weeks. I feel

responsible for the welfare of my father but we did not have a loving

relationship. I think he has exhibited symptoms since sometime before 2008

based on conversations I remember with my mother. Does anyone have insite or

experiences that will help me know if I have made the right decision?

[Guest guest]

Your Mom who wants the eyelashes & heels reminds me of my Mom at times.  Most

days she's bound & determined that my brother or I are going to move her back to

FL & get her an apt, & then of course she's going to get her driver's license.

 She needs help being transfered to & from her wheel chair to a regular chair

or to the toilet and for the most part is totally dead weight, but in her mind

she thinks she can still walk & take care of herself.  She begs me every time I

see her to let her live with me, or to get her a place to live, and she says she

can take care of herself.  The hallucinations don't seem to be as bad as they

have been in the past, but she does still have them on occasion. So once again

that is why I was so happy she had a really good day yesterday.  I took 2 of

her friends to see her on Sunday and she enjoyed seeing them, so she had 2 good

days in a row which is rare, but I am thankful for good days when she has them.

Subject: Re: Assisted Living vs. Nursing Home

To: LBDcaregivers

Date: Tuesday, February 22, 2011, 11:29 AM

 

Hi!

My mother is like your father. And like you, I knew I could not put my

mother in an assisted living. Nursing homes, has 24 hour nursing care, and I

think a Lewy Body dementia needs that special extra care with nurses being

nearby. An assisted living isn't 24 hour nursing care.

My mother is having more " abnormal " days lately than " normal " days.

And that is more upsetting to visit her like this. I go usually every

single day at her nursing home.

She fell and broke her arm almost 3 months ago and is still healing from

that and has been in rehab at her nursing home to build her strength up from

that fall, which has been helping her and she is able to move her arm

better now. She is on a light pain med, Ultram, and may be on that forever.

She has had a few not so bad hallucinating days the last month, but then she

will go straight into hallucinations lately and its hard for me to deal

with that. It is upsetting to me. I can't sit in her room with her

listening to these wild wild stories for over 10 minutes I need to leave with

her.

So what I have done is go to the dining room with her either at lunch or

dinner time and sit with her there and help out with any feeding things she

might need, and don't get nervous when she doesn't constantly tell me her

wild stories at the table, I can talk to her friends at the table and will

converse with her too, and she will not blab on and on about these crazy

stories with her friends sitting there that much at all. So that's my

solution the best way I can deal with it.

I have a very very busy life, I'm 58, I have much to do at home, I have my

3 grown kids living at home, due to economic reasons, the economy is so

bad, they all work/college, I also take care of my 6 yr. old granddaughter

daily when she comes out of school.

So I already have lots of stress in my life with so much to do, and to go

up there at the home and listening to stories my mother tells me that are

mostly unbelievable, not reality, I feel like I'm in a dream world with her

listening, and I don't have time to do that, so that is my solution to be

with her, love her, and still not have to listen to these as much being in

the dining room with her.

I have Lupus, Osteoporis, many many other things wrong with me, I deal

with it, go on and do ok, thanks to the Good Lord above.

My mother makes bad decisions too, I think your in my shoes too, do I give

in or not! My Mom wants high heels to wear and dress up pretty, well, she

has told me over and over in the past year to get her some high heels!!

She's 87 yrs. old and now in a wheelchair but she wheels herself to the

potty and can get in and out of that way only. That is just nuts, I have told

her oh NO NO you would fall in those shoes and break every bone in your

body. She just laughs but always wants me to do this! Then she always wants

me to buy her false eyelashes!! Well, I've told her no, that if she gets

glue in her eyes that would burn like fire! She says, OH LINDA, I CAN PUT

THOSE ON JUST FINE!!! So I hear about the high heels and false eyelashes

about once a week! Just like you hear from your dad about wanting to move

into an apt. My mom can be stubborn in certain ways, and easy going, so

sweet in other ways.

This disease will drive you crazy!

When I leave the home, I leave it all behind until the next day.

I wish you well, and good luck with your Dad, may God bless you and him!

in Texas

After my mother died in November of 2009, my father moved in with us. He

had what I call three significant episodes of confusion/hallucinations etc

during the 9 months he lived with us and was eventually diagnosed with Lewy

Body Dementia. His last episode lasted 5 weeks and I moved him into a

dementia unit of a local nursing home. As in his other two episodes, he has now

popped back to his more " normal " self. Not normal as being able to live by

himself because of excessive sleeping, confusion upon waking and many, many

falls one ending with an injury that blinded him in one eye (fall occurring

in the hospital while he was being tested for change in mental condition).

I feel nursing home is the best place for him (given that I am not willing

to care for him in my home after that last long episode). I feel with his

frequency of episodes and falls, assisted living would not be appropriate.

It would be OK when he was in his " normal " stage but I feel he would be

asked to leave when an " episode " occurred or if he fell repeatedly. He has

already been in three nursing homes (two basically for rehab after events) and

moved to my home in the last year. I feel I've found a place where he can

stay and be taken care of for the rest of his life. The problem is he hates

it there. He doesn't even remember any of his episodes. After every visit,

I fight with myself over the decision to move him there. He is not a

social person. He just wants to live alone in an apartment close to stores that

he can walk or " bike " to. Police started paperwork to take away his license

after an accident shortly after my mother passed away. Do I have him in

the right place? Did I do the right thing? Should I be letting him make the

decision on where to live? I really don't think so. How can someone who

can't remember these episodes make a good decision. He wants to get a helmet

that he can wear so that he doesn't injure his head when he falls down. That

is how he justified living alone when I ask what he will do if he falls. He

recently fell in the nursing home and had eight stitches under the eyebrow

of his good eye. I have such terrible guilt but when I rethink the

decision as I do about every other hour, I come up with the same solution. He

has

been in the nursing home about 10 weeks. I feel responsible for the welfare

of my father but we did not have a loving relationship. I think he has

exhibited symptoms since sometime before 2008 based on conversations I

remember with my mother. Does anyone have insite or experiences that will help

me

know if I have made the right decision?

[Guest guest]

I think that you have made some comments that make me think that you did the

right thing.

First, you say you never had a real loving relationship with him. If he was in

your home, you would slowly become his caregiver and have little time for

yourself and your family.

If your Dad wants to live by himself and bike to where he wants to go, he could

get hit by a car because he will lose his sense of reason...become like a 3 year

old at time. You wouldn't let your tiny child be riding their bikes to the

stores, etc. He could bike and keep going and get lost.

There is really no indication of when/where/how he will get another Lewy

episode, and how long it may last, and how bad it may be.

Caregiving in your home is a huge commitment on your part. You are then

responsible for him and also you need to adapt to a regular schedule because

that is what he needs to do well.

I am assuming that your dad is in a nursing home with a memory care unit. Is

there a neurologist there that has good knowledge of LBD?

That is very important, because this is not Alzheimers and many things including

the medication that he is given that only a doctor who is well-versed in LBD can

make the right decisions on.

I wish you luck with your dad in this nursing home and hope that it is the right

facility for him. You may hear mean things from him because 'you put me here'

but he cannot realize that he has the problems with LBD.

God bless you,

Joan

>

> After my mother died in November of 2009, my father moved in with us. He had

what I call three significant episodes of confusion/hallucinations etc during

the 9 months he lived with us and was eventually diagnosed with Lewy Body

Dementia. His last episode lasted 5 weeks and I moved him into a dementia unit

of a local nursing home. As in his other two episodes, he has now popped back

to his more " normal " self. Not normal as being able to live by himself because

of excessive sleeping, confusion upon waking and many, many falls one ending

with an injury that blinded him in one eye (fall occurring in the hospital while

he was being tested for change in mental condition). I feel nursing home is the

best place for him (given that I am not willing to care for him in my home after

that last long episode). I feel with his frequency of episodes and falls,

assisted living would not be appropriate. It would be OK when he was in his

" normal " stage but I feel he would be asked to leave when an " episode " occurred

or if he fell repeatedly. He has already been in three nursing homes (two

basically for rehab after events) and moved to my home in the last year. I feel

I've found a place where he can stay and be taken care of for the rest of his

life. The problem is he hates it there. He doesn't even remember any of his

episodes. After every visit, I fight with myself over the decision to move him

there. He is not a social person. He just wants to live alone in an apartment

close to stores that he can walk or " bike " to. Police started paperwork to take

away his license after an accident shortly after my mother passed away. Do I

have him in the right place? Did I do the right thing? Should I be letting him

make the decision on where to live? I really don't think so. How can someone

who can't remember these episodes make a good decision. He wants to get a

helmet that he can wear so that he doesn't injure his head when he falls down.

That is how he justified living alone when I ask what he will do if he falls.

He recently fell in the nursing home and had eight stitches under the eyebrow of

his good eye. I have such terrible guilt but when I rethink the decision as I

do about every other hour, I come up with the same solution. He has been in the

nursing home about 10 weeks. I feel responsible for the welfare of my father

but we did not have a loving relationship. I think he has exhibited symptoms

since sometime before 2008 based on conversations I remember with my mother.

Does anyone have insite or experiences that will help me know if I have made the

right decision?

>

[Guest guest]

Hi linda,

Have you thought about going to a thrift store and purchasing a pair of high

heels..in about three sizes too small for her? She would see her high heels,

but would never be able to wear them.

False eyelashes??? what if had the eyelashes but none of the glue? She would

have them...just couldn't put them on.

I am glad that your Mom is having some healing of her broken arm. You have so

much on your plate, and you have made a good decision for you to have your Mom

in the NH. She has people around her that she can talk with and the nurses to

take care of the other physical things taht you cannot do with your Lupus and

osteoporosis.

>

>

> Hi!

>

> My mother is like your father. And like you, I knew I could not put my

> mother in an assisted living. Nursing homes, has 24 hour nursing care, and I

> think a Lewy Body dementia needs that special extra care with nurses being

> nearby. An assisted living isn't 24 hour nursing care.

>

> My mother is having more " abnormal " days lately than " normal " days.

> And that is more upsetting to visit her like this. I go usually every

> single day at her nursing home.

>

> She fell and broke her arm almost 3 months ago and is still healing from

> that and has been in rehab at her nursing home to build her strength up from

> that fall, which has been helping her and she is able to move her arm

> better now. She is on a light pain med, Ultram, and may be on that forever.

> She has had a few not so bad hallucinating days the last month, but then she

> will go straight into hallucinations lately and its hard for me to deal

> with that. It is upsetting to me. I can't sit in her room with her

> listening to these wild wild stories for over 10 minutes I need to leave with

her.

> So what I have done is go to the dining room with her either at lunch or

> dinner time and sit with her there and help out with any feeding things she

> might need, and don't get nervous when she doesn't constantly tell me her

> wild stories at the table, I can talk to her friends at the table and will

> converse with her too, and she will not blab on and on about these crazy

> stories with her friends sitting there that much at all. So that's my

> solution the best way I can deal with it.

>

> I have a very very busy life, I'm 58, I have much to do at home, I have my

> 3 grown kids living at home, due to economic reasons, the economy is so

> bad, they all work/college, I also take care of my 6 yr. old granddaughter

> daily when she comes out of school.

>

> So I already have lots of stress in my life with so much to do, and to go

> up there at the home and listening to stories my mother tells me that are

> mostly unbelievable, not reality, I feel like I'm in a dream world with her

> listening, and I don't have time to do that, so that is my solution to be

> with her, love her, and still not have to listen to these as much being in

> the dining room with her.

>

> I have Lupus, Osteoporis, many many other things wrong with me, I deal

> with it, go on and do ok, thanks to the Good Lord above.

>

> My mother makes bad decisions too, I think your in my shoes too, do I give

> in or not! My Mom wants high heels to wear and dress up pretty, well, she

> has told me over and over in the past year to get her some high heels!!

> She's 87 yrs. old and now in a wheelchair but she wheels herself to the

> potty and can get in and out of that way only. That is just nuts, I have

told

> her oh NO NO you would fall in those shoes and break every bone in your

> body. She just laughs but always wants me to do this! Then she always wants

> me to buy her false eyelashes!! Well, I've told her no, that if she gets

> glue in her eyes that would burn like fire! She says, OH LINDA, I CAN PUT

> THOSE ON JUST FINE!!! So I hear about the high heels and false eyelashes

> about once a week! Just like you hear from your dad about wanting to move

> into an apt. My mom can be stubborn in certain ways, and easy going, so

> sweet in other ways.

>

> This disease will drive you crazy!

> When I leave the home, I leave it all behind until the next day.

>

> I wish you well, and good luck with your Dad, may God bless you and him!

> in Texas

>

>

>

>

>

>

>

> After my mother died in November of 2009, my father moved in with us. He

> had what I call three significant episodes of confusion/hallucinations etc

> during the 9 months he lived with us and was eventually diagnosed with Lewy

> Body Dementia. His last episode lasted 5 weeks and I moved him into a

> dementia unit of a local nursing home. As in his other two episodes, he has

now

> popped back to his more " normal " self. Not normal as being able to live by

> himself because of excessive sleeping, confusion upon waking and many, many

> falls one ending with an injury that blinded him in one eye (fall occurring

> in the hospital while he was being tested for change in mental condition).

> I feel nursing home is the best place for him (given that I am not willing

> to care for him in my home after that last long episode). I feel with his

> frequency of episodes and falls, assisted living would not be appropriate.

> It would be OK when he was in his " normal " stage but I feel he would be

> asked to leave when an " episode " occurred or if he fell repeatedly. He has

> already been in three nursing homes (two basically for rehab after events)

and

> moved to my home in the last year. I feel I've found a place where he can

> stay and be taken care of for the rest of his life. The problem is he hates

> it there. He doesn't even remember any of his episodes. After every visit,

> I fight with myself over the decision to move him there. He is not a

> social person. He just wants to live alone in an apartment close to stores

that

> he can walk or " bike " to. Police started paperwork to take away his license

> after an accident shortly after my mother passed away. Do I have him in

> the right place? Did I do the right thing? Should I be letting him make the

> decision on where to live? I really don't think so. How can someone who

> can't remember these episodes make a good decision. He wants to get a helmet

> that he can wear so that he doesn't injure his head when he falls down. That

> is how he justified living alone when I ask what he will do if he falls. He

> recently fell in the nursing home and had eight stitches under the eyebrow

> of his good eye. I have such terrible guilt but when I rethink the

> decision as I do about every other hour, I come up with the same solution. He

has

> been in the nursing home about 10 weeks. I feel responsible for the welfare

> of my father but we did not have a loving relationship. I think he has

> exhibited symptoms since sometime before 2008 based on conversations I

> remember with my mother. Does anyone have insite or experiences that will

help me

> know if I have made the right decision?

>

>

>

>

>

>

[Guest guest]

I would highly recommend finding a place that specializes in dementia.

My father spend a few months in a nursing home and they could not keep an eye on

him and he had repeated falls since he was able to walk around. Eventually he

became a problem due to that and his increasingly bizarre behavior. The nursing

home's solution was to heavily medicate him, which in my opinion caused a

significant decline. He stayed in a bed/wheelchair out of it for weeks. I

couldn't take that so after extensive research I found a place that would take

him (Alzcare) and they didn't believe it medicating the residents (except

certain needed drugs) If a resident wanted to walk all night, that was allowed.

The staff was trained to work with dementia. The nursing home couldn't watch him

and didn't know how to handle his condition.

He came off the heavy drugs and was not able to walk again. He died 30 days

later. I wish I would have found Alzcare at the beginning and I believe he would

have not only lived longer, but his quality of life would have been better. A

dementia care facility is designed around the needs of a loved one and they are

able to watch the residents because of the layout and the fact that they are

locked in.

It's so hard to know what to do. I feel much empathy and compassion for you and

your family. Keep asking questions and I would suggest following your instincts.

Warmly,

Kelli

> >

> > After my mother died in November of 2009, my father moved in with us. He

had what I call three significant episodes of confusion/hallucinations etc

during the 9 months he lived with us and was eventually diagnosed with Lewy Body

Dementia. His last episode lasted 5 weeks and I moved him into a dementia unit

of a local nursing home. As in his other two episodes, he has now popped back

to his more " normal " self. Not normal as being able to live by himself because

of excessive sleeping, confusion upon waking and many, many falls one ending

with an injury that blinded him in one eye (fall occurring in the hospital while

he was being tested for change in mental condition). I feel nursing home is the

best place for him (given that I am not willing to care for him in my home after

that last long episode). I feel with his frequency of episodes and falls,

assisted living would not be appropriate. It would be OK when he was in his

" normal " stage but I feel he would be asked to leave when an " episode " occurred

or if he fell repeatedly. He has already been in three nursing homes (two

basically for rehab after events) and moved to my home in the last year. I feel

I've found a place where he can stay and be taken care of for the rest of his

life. The problem is he hates it there. He doesn't even remember any of his

episodes. After every visit, I fight with myself over the decision to move him

there. He is not a social person. He just wants to live alone in an apartment

close to stores that he can walk or " bike " to. Police started paperwork to take

away his license after an accident shortly after my mother passed away. Do I

have him in the right place? Did I do the right thing? Should I be letting him

make the decision on where to live? I really don't think so. How can someone

who can't remember these episodes make a good decision. He wants to get a

helmet that he can wear so that he doesn't injure his head when he falls down.

That is how he justified living alone when I ask what he will do if he falls.

He recently fell in the nursing home and had eight stitches under the eyebrow of

his good eye. I have such terrible guilt but when I rethink the decision as I

do about every other hour, I come up with the same solution. He has been in the

nursing home about 10 weeks. I feel responsible for the welfare of my father

but we did not have a loving relationship. I think he has exhibited symptoms

since sometime before 2008 based on conversations I remember with my mother.

Does anyone have insite or experiences that will help me know if I have made the

right decision?

> >

>