Re: Assisted Living vs. Nursing Home

February 22, 2011

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?

February 22, 2011

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

February 22, 2011

Katy, it sounds like you are doing the best for your precious Mom too.

Your Mom is so very young to go through this!! Your right it was so hard

in the beginning, I cried a river so much, especially the first months.

Take care,

in Texas

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

February 22, 2011

Hi,

I'm relatively new to the group but have done a lot of reading and learning and

experiencing, with my Dad and LBD. It sounds to me like when you are honest

with yourself, you know you have done what is best for your situation. I think

it is hard when you continue to question yourself. I suspect you have done

exactly what's right for you and your father. I can understand and sympathize

with his desires to be alone, but it clearly would not be very safe for a

variety of reasons. And there is also comfort for you in knowing that you know

he can stay and will be taken care of for the rest of his life. That is really

critical, for both of you! I think you should rely on the instincts that you

did when you placed him, and 'get off your back' so to speak. As hard as it is,

you did what you needed to do, for his safety and for yourself as well.

Lori

Assisted Living vs. Nursing Home

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?

February 22, 2011

Thank you to all that responded. I'm very new to this and am not sure how to

reply. I am an only child and have no one to really discuss this with. Dad

really had no friends left. I can see that everyone has so many difficulties

with this. I am in good health myself. I can't imagine trying to handle this

if ill.

>

> Hi,

>

> I'm relatively new to the group but have done a lot of reading and learning

and experiencing, with my Dad and LBD. It sounds to me like when you are honest