Re: Mother going back to ALF

[Guest guest]

Eileen,

I hope you get your Mom back to where it seems she belongs ans with her own

things. I never like the hospital either.

Good luck and hope you find your new MD.

Hugs,

Donna R

Caregave for Mom (after I brought her from WI to MI) for 3 years and 4th year in

a nh.

She was almost 89 when she died in '02. No dx other than mine.

Mother going back to ALF

The past 3 weeks have been the worst for Mother. I have been working

with the director of the ALF where Mother was living to get her back

there ASAP. Mother was hospitalized for a UTI on April 7 and on her

doctor's order, relayed through the discharge nurse and social

worker at the hospital, had to go to a NH to recuperate. While in

the hospital I had asked her dr. if she had a stroke because she

wasn't using her right hand and also I could only understand a

couple of words she was saying and the rest was gibberish. He said

no because, as he explained it, her arm and leg were too rigid and

if she had had a stroke they would have been limp. So he did not run

any tests. It's been 2 weeks since she was put in the NH, besides

being more alert, there has been no improvement at all in her mental

status.

Last Wednesday Mother went to see Dr. Holm, a geriatrician who

specializes in Parkinson's and dementia. I told him that I felt

Mother had a stroke and after he talked to her and just looking at

her he agreed so he ordered an MRI which was done Friday afternoon.

He also started her on the Exelon patch. Late Friday afternoon I

received a phone call from her primary dr. acting as if he had

ordered the MRI. He said, " Yes, your Mother had a stroke 2-10 days

ago. I was sitting down with her while she was eating and noticed

that the right side of her mouth was droopy. " I should have spoken

up right then and there and said I specifically asked you in the

hospital if she had had a stroke and you said no. But I didn't,

because I was too angry.

I took her again to see Dr. Holm this Wednesday and brought a disk

with the MRI results. He put it on his computer and showed me the

area on the left side the brain where the stroke was. And then he

thanked me because he said that he has learned to listen to the

patient and family members because they are usually right. He

explained that when he went to medical school at the University of

Iowa that they were taught that the doctor is always right. He said

it took him a long time to change his thinking but now he listens to

the concerns of the patient and family members because they are

usually right. Again as the week before, Dr. Holm took his time

talking to me and also Mother. When Mother was wheeled into his

office she had her right side to us. As we were talking she would

say, " Hello! Hello! " He then got up and changed her position so her

left side was towards her. He explained that a normal brain will

break an image apart and put it back together but since my Mother

had a stroke on the left side of the brain, which affects the right

side, it doesn't put the image back together for her so he

recommended that we talk to her from her left side. He also said

that it is very common to become more depressed with a stroke so he

is increasing her Effexor and leaving her on the Exelon patch which

he started last week. He said that I should see some improvement in

her in the next two weeks. He also asked me if I felt comfortable

having my Mother at the NH. I said no and he agreed that she might

improve faster if she returned to the ALF. I also told me I have the

right to change doctors.

Up until 2 days ago, I didn't feel Mother was ready to go back to

the ALF. Now that she is a one person transfer, which was a

requirement of the ALF, I want to get her out of the NH and back to

the ALF where the staff and residents miss her. The NH has more

residents, does not have a homey feeling, and Mother is left alone

many times out by the nurse's station. The ALF only has 19

residents. Her room there is furnished with her own belongings. The

other day I pushed the call button from Mother's room at the NH for

someone to come in and take her to the bathroom. I timed how long it

took for someone to come in. After waiting 5 minutes of no one

coming in I finally went to the nurse's station and told them that

my Mother's call light had been on for 5 minutes and no one had come

in. It still took another few minutes before anyone came in. One

afternoon last week my Mother was laying down but I could not even

rouse her. I had asked a couple of the staff how long she had been

sleeping and the reply from both was, " I don't know. " When I finally

had them get her up, she was soaked with urine down to the bedding.

I hate having Mother there. Every day when I come to visit Mother

it's, " I'm scared. I'm worried. I want to go home. "

The director at the ALF has been to the NH a couple of times

assessing Mother in the last week. Last night I called her and said

it's time to move Mother back. So another assessment was done this

morning by the ALF at the NH. They feel she is ready to go back. I

stopped at the ALF this afternoon and went through doing another

care plan for Mother and then the director's assistant said that she

had to go to the clinic before Mother's primary dr. left for the day

to have him sign papers okaying Mother to be discharged back to the

ALF. While she went to the clinic, which is attached to the NH, I

went to see Mother. As I walked by the nurse's station on my way to

Mother's room to see if she was there, I heard the nurse say that

her daughter is here. I stopped at the desk and the nurse said that

the dr. just called and he didn't know that my Mother was being

discharged. I hadn't said anything to the NH because I wanted the

ALF to do their assessment first. Then the nurse said that the NH

has to do an assessment determining if she can leave. I then found

Mother in the dining room and the first words she said to me

was, " Get me out! " I turned around and here was the woman from the

ALF. She said that Mother's dr. would not sign the papers and was

very rude to her. He doesn't feel Mother is ready to be discharged.

He said when he saw her this morning that she was bed ridden. I told

her I'm going to talk to the dr. now and that I wanted her to come

along as a sign to the him that I approved of her being released to

the ALF. I am also her POA for health. After waiting 10-15 minutes,

the dr. walked in saying, " Hello, Mrs. . How are you today? "

I thought, cut the niceties! He sat down and I said that I wanted my

Mother discharged tomorrow and told him what she had just said to

me. I said she says she wants to go home every time I come. She

hates where she is. His excuse for not wanting to discharge her was

that he's afraid that she might fall again. Right now she is in a

wheelchair. She has a chair alarm and a bed alarm which she will

also have at the ALF. I told him about how I pushed the call button

and that no one came in after 5 minutes. What if my Mother had been

laying on the floor? I said there has been no improvement in Mother

in the two weeks she's been in the NH and when I talked to Dr. Holm

yesterday he agreed that she would probably improve faster if she

moved back to the ALF. He took the papers from the ALF and said he

would read them and fax them back. I went back to the NH and talked

to the nurse and she said the dr. had called and told her to have an

assessment done in the morning. The director at the ALF would then

be called when the assessment was completed. My aunt and I are going

to the NH in the morning and Mother will be moved tomorrow as soon

as we can do it.

When the asst. and I returned to the ALF, to my amazement the dr.

had faxed the forms back. He then called me saying that he would

approve her being discharged after the assessment but still saying

that he didn't feel comfortable with Mother going back to the ALF

because he was concerned about her falling. I asked the asst. if the

dr. had ever come to the ALF to see what it was like. She said as

far as she knew he never had. I had just spent the last couple of

hours going over my Mother's new care plan and was told that she

would be checked on every 15 minutes, be toileted every 2 hours,

turned in bed at night every 2 hours, therapy would be done at the

ALF, etc. In the NH I felt I had no say over anything. I am

concerned that if my Mother doesn't return to the ALF now that she

may not come out of the NH alive. She is not eating well and just

does not feel safe.

Dr. Holm has been the only bright light in the past 3 weeks. He has

been so positive and sees no reason why Mother can't improve by

increasing her Effexor to help her depression and by taking the

Exelon patch. He said the stroke caused angular gyrus syndrome which

affects the speech and coordination and we should see improvement

with therapy. I've never had a dr. take so much time to explain

things. But I feel she will only improve at the ALF. During the past

3 weeks, the staff at the ALF have been very supportive, have come

to visit my Mother, have called me asking not only how Mother was

doing but how I was doing, they're praying for her, plus the

residents miss her.

I've already complained about Mother's primary dr. to the Director

of Inpatient Services at the hospital because he did not order any

tests while she was in the hospital, never talked to me directly

about not being able to return to the ALF or her being discharged

from the hospital. This dr. still believes that the dr. is always

right and knows what is best for his patients without even taking

into consideration what the family has to say. As I understand it, I

have the right to file a complaint against this dr. because he

failed to diagnosis the stroke. Next week I will be finding a new

primary dr. for my Mother.

My cousin can't understand why I'm taking Mother to " all these

doctors. " She asks why can't my Mother just accept the way she is. I

told her I know Mother will not be the way she was but she has the

right to a better quality of life and not have to experience all the

hallucinations and confusion every time her meds are changed or

adjusted. Her neurologist was just guessing on what meds to

prescribe for Mother. Besides I had this appointment with Dr. Holm,

the geriatrician who specializes in Parkinson's and dementia, weeks

before she had the UTI. Dr. Holm gets frustrated with drs. who give

up on the elderly. He said the elderly can be helped. And besides

Mother keeps saying she wants to get better.

My brother and sister-in-law were home last weekend which gave me a

few days I didn't have to go visit Mother. However, where I spend

hours with Mother, they spent an hour here and an hour there. They

had time on Saturday afternoon to go see a movie and then take my

husband and I out for supper. It was halfway through the meal before

my brother brought up Mother. And then he said that he and my sister-

in-law were going to NYC and then to Ireland and they would be gone

from May 6-31. I asked if they would have phone contact or could

they check their e-mail. They said they would check their e-mails

about every 2 days. Then he said that if Mother dies when they're at

the beginning of their trip that we should go ahead with the funeral

and that they wouldn't come back for it. I couldn't believe what he

was saying. In the first place if Mother gets back to the ALF, I

don't see that she will be dying any time soon.

It's late. Thanks for letting me rant and rave. It helps me get it

out of my mind and on " paper. " Tomorrow I will rejoice because

Mother will be back at the ALF!

We all have our hardships dealing with our LOs but He gives us the

strength to be advocates for them as they can't do it for

themselves.

Blessings to all,

Eileen in MN

[Guest guest]

Eileen - You go girl! You're taking wonderful care of your mother.

Here's hoping she's out of the NH and into that ALF ASAP. Maybe Dr.

Holm could suggest a PCP for your mom.

[Guest guest]

At least you have one thing to be thankful for - your Dr. Holm. Wish there were

more like him. He is correct that many doctors give up on the elderly,

particularly with dementia. I know that was true with my husband.

I'm sorry about your brother's attitude - but it's often the case with many

siblings.

Good luck.

JuneC

>

> Subject: Mother going back to ALF

> To: LBDcaregivers

> Date: Thursday, April 24, 2008, 11:32 PM

> The past 3 weeks have been the worst for Mother. I have been

> working

> with the director of the ALF where Mother was living to get

> her back

> there ASAP. Mother was hospitalized for a UTI on April 7

> and on her

> doctor's order, relayed through the discharge nurse and

> social

> worker at the hospital, had to go to a NH to recuperate.

> While in

> the hospital I had asked her dr. if she had a stroke

> because she

> wasn't using her right hand and also I could only

> understand a

> couple of words she was saying and the rest was gibberish.

> He said

> no because, as he explained it, her arm and leg were too

> rigid and

> if she had had a stroke they would have been limp. So he

> did not run

> any tests. It's been 2 weeks since she was put in the

> NH, besides

> being more alert, there has been no improvement at all in

> her mental

> status.

>

> Last Wednesday Mother went to see Dr. Holm, a geriatrician

> who

> specializes in Parkinson's and dementia. I told him

> that I felt

> Mother had a stroke and after he talked to her and just

> looking at

> her he agreed so he ordered an MRI which was done Friday

> afternoon.

> He also started her on the Exelon patch. Late Friday

> afternoon I

> received a phone call from her primary dr. acting as if he

> had

> ordered the MRI. He said, " Yes, your Mother had a

> stroke 2-10 days

> ago. I was sitting down with her while she was eating and

> noticed

> that the right side of her mouth was droopy. " I should

> have spoken

> up right then and there and said I specifically asked you

> in the

> hospital if she had had a stroke and you said no. But I

> didn't,

> because I was too angry.

>

> I took her again to see Dr. Holm this Wednesday and brought

> a disk

> with the MRI results. He put it on his computer and showed

> me the

> area on the left side the brain where the stroke was. And

> then he

> thanked me because he said that he has learned to listen to

> the

> patient and family members because they are usually right.

> He

> explained that when he went to medical school at the

> University of

> Iowa that they were taught that the doctor is always right.

> He said

> it took him a long time to change his thinking but now he

> listens to

> the concerns of the patient and family members because they

> are

> usually right. Again as the week before, Dr. Holm took his

> time

> talking to me and also Mother. When Mother was wheeled into

> his

> office she had her right side to us. As we were talking she

> would

> say, " Hello! Hello! " He then got up and changed

> her position so her

> left side was towards her. He explained that a normal brain

> will

> break an image apart and put it back together but since my

> Mother

> had a stroke on the left side of the brain, which affects

> the right

> side, it doesn't put the image back together for her so

> he

> recommended that we talk to her from her left side. He also

> said

> that it is very common to become more depressed with a

> stroke so he

> is increasing her Effexor and leaving her on the Exelon

> patch which

> he started last week. He said that I should see some

> improvement in

> her in the next two weeks. He also asked me if I felt

> comfortable

> having my Mother at the NH. I said no and he agreed that

> she might

> improve faster if she returned to the ALF. I also told me I

> have the

> right to change doctors.

>

> Up until 2 days ago, I didn't feel Mother was ready to

> go back to

> the ALF. Now that she is a one person transfer, which was a

>

> requirement of the ALF, I want to get her out of the NH and

> back to

> the ALF where the staff and residents miss her. The NH has

> more

> residents, does not have a homey feeling, and Mother is

> left alone

> many times out by the nurse's station. The ALF only has

> 19

> residents. Her room there is furnished with her own

> belongings. The

> other day I pushed the call button from Mother's room

> at the NH for

> someone to come in and take her to the bathroom. I timed

> how long it

> took for someone to come in. After waiting 5 minutes of no

> one

> coming in I finally went to the nurse's station and

> told them that

> my Mother's call light had been on for 5 minutes and no

> one had come

> in. It still took another few minutes before anyone came

> in. One

> afternoon last week my Mother was laying down but I could

> not even

> rouse her. I had asked a couple of the staff how long she

> had been

> sleeping and the reply from both was, " I don't

> know. " When I finally

> had them get her up, she was soaked with urine down to the

> bedding.

> I hate having Mother there. Every day when I come to visit

> Mother

> it's, " I'm scared. I'm worried. I want to

> go home. "

>

> The director at the ALF has been to the NH a couple of

> times

> assessing Mother in the last week. Last night I called her

> and said

> it's time to move Mother back. So another assessment

> was done this

> morning by the ALF at the NH. They feel she is ready to go

> back. I

> stopped at the ALF this afternoon and went through doing

> another

> care plan for Mother and then the director's assistant

> said that she

> had to go to the clinic before Mother's primary dr.

> left for the day

> to have him sign papers okaying Mother to be discharged

> back to the

> ALF. While she went to the clinic, which is attached to the

> NH, I

> went to see Mother. As I walked by the nurse's station

> on my way to

> Mother's room to see if she was there, I heard the

> nurse say that

> her daughter is here. I stopped at the desk and the nurse

> said that

> the dr. just called and he didn't know that my Mother

> was being

> discharged. I hadn't said anything to the NH because I

> wanted the

> ALF to do their assessment first. Then the nurse said that

> the NH

> has to do an assessment determining if she can leave. I

> then found

> Mother in the dining room and the first words she said to

> me

> was, " Get me out! " I turned around and here was

> the woman from the

> ALF. She said that Mother's dr. would not sign the

> papers and was

> very rude to her. He doesn't feel Mother is ready to be

> discharged.

> He said when he saw her this morning that she was bed

> ridden. I told

> her I'm going to talk to the dr. now and that I wanted

> her to come

> along as a sign to the him that I approved of her being

> released to

> the ALF. I am also her POA for health. After waiting 10-15

> minutes,

> the dr. walked in saying, " Hello, Mrs. . How

> are you today? "

> I thought, cut the niceties! He sat down and I said that I

> wanted my

> Mother discharged tomorrow and told him what she had just

> said to

> me. I said she says she wants to go home every time I come.

> She

> hates where she is. His excuse for not wanting to discharge

> her was

> that he's afraid that she might fall again. Right now

> she is in a

> wheelchair. She has a chair alarm and a bed alarm which she

> will

> also have at the ALF. I told him about how I pushed the

> call button

> and that no one came in after 5 minutes. What if my Mother

> had been

> laying on the floor? I said there has been no improvement

> in Mother

> in the two weeks she's been in the NH and when I talked

> to Dr. Holm

> yesterday he agreed that she would probably improve faster

> if she

> moved back to the ALF. He took the papers from the ALF and

> said he

> would read them and fax them back. I went back to the NH

> and talked

> to the nurse and she said the dr. had called and told her

> to have an

> assessment done in the morning. The director at the ALF

> would then

> be called when the assessment was completed. My aunt and I

> are going

> to the NH in the morning and Mother will be moved tomorrow

> as soon

> as we can do it.

>

> When the asst. and I returned to the ALF, to my amazement

> the dr.

> had faxed the forms back. He then called me saying that he

> would

> approve her being discharged after the assessment but still

> saying

> that he didn't feel comfortable with Mother going back

> to the ALF

> because he was concerned about her falling. I asked the

> asst. if the

> dr. had ever come to the ALF to see what it was like. She

> said as

> far as she knew he never had. I had just spent the last

> couple of

> hours going over my Mother's new care plan and was told

> that she

> would be checked on every 15 minutes, be toileted every 2

> hours,

> turned in bed at night every 2 hours, therapy would be done

> at the

> ALF, etc. In the NH I felt I had no say over anything. I am

>

> concerned that if my Mother doesn't return to the ALF

> now that she

> may not come out of the NH alive. She is not eating well

> and just

> does not feel safe.

>

> Dr. Holm has been the only bright light in the past 3

> weeks. He has

> been so positive and sees no reason why Mother can't

> improve by

> increasing her Effexor to help her depression and by taking

> the

> Exelon patch. He said the stroke caused angular gyrus

> syndrome which

> affects the speech and coordination and we should see

> improvement

> with therapy. I've never had a dr. take so much time to

> explain

> things. But I feel she will only improve at the ALF. During

> the past

> 3 weeks, the staff at the ALF have been very supportive,

> have come

> to visit my Mother, have called me asking not only how

> Mother was

> doing but how I was doing, they're praying for her,

> plus the

> residents miss her.

>

> I've already complained about Mother's primary dr.

> to the Director

> of Inpatient Services at the hospital because he did not

> order any

> tests while she was in the hospital, never talked to me

> directly

> about not being able to return to the ALF or her being

> discharged

> from the hospital. This dr. still believes that the dr. is

> always

> right and knows what is best for his patients without even

> taking

> into consideration what the family has to say. As I

> understand it, I

> have the right to file a complaint against this dr. because

> he

> failed to diagnosis the stroke. Next week I will be finding

> a new

> primary dr. for my Mother.

>

> My cousin can't understand why I'm taking Mother to

> " all these

> doctors. " She asks why can't my Mother just accept

> the way she is. I

> told her I know Mother will not be the way she was but she

> has the

> right to a better quality of life and not have to

> experience all the

> hallucinations and confusion every time her meds are

> changed or

> adjusted. Her neurologist was just guessing on what meds to

>

> prescribe for Mother. Besides I had this appointment with

> Dr. Holm,

> the geriatrician who specializes in Parkinson's and

> dementia, weeks

> before she had the UTI. Dr. Holm gets frustrated with drs.

> who give

> up on the elderly. He said the elderly can be helped. And

> besides

> Mother keeps saying she wants to get better.

>

> My brother and sister-in-law were home last weekend which

> gave me a

> few days I didn't have to go visit Mother. However,

> where I spend

> hours with Mother, they spent an hour here and an hour

> there. They

> had time on Saturday afternoon to go see a movie and then

> take my

> husband and I out for supper. It was halfway through the

> meal before

> my brother brought up Mother. And then he said that he and

> my sister-

> in-law were going to NYC and then to Ireland and they would

> be gone

> from May 6-31. I asked if they would have phone contact or

> could

> they check their e-mail. They said they would check their

> e-mails

> about every 2 days. Then he said that if Mother dies when

> they're at

> the beginning of their trip that we should go ahead with

> the funeral

> and that they wouldn't come back for it. I couldn't

> believe what he

> was saying. In the first place if Mother gets back to the

> ALF, I

> don't see that she will be dying any time soon.

>

> It's late. Thanks for letting me rant and rave. It

> helps me get it

> out of my mind and on " paper. " Tomorrow I will

> rejoice because

> Mother will be back at the ALF!

>

> We all have our hardships dealing with our LOs but He gives

> us the

> strength to be advocates for them as they can't do it

> for

> themselves.

>

> Blessings to all,

> Eileen in MN

>

>

> ------------------------------------

>

> Welcome to LBDcaregivers.

>

>

[Guest guest]

You go girl!! Your mother is lucky to have you as an advocate. Would that

all our seniors have good advocates. Keep it up and good luck to you and

your mother. Leona

Leona: Caregiver for husband Ray, age 67, diagnosed 2/04 with Parkinson's

Disease. Changed doctors, diagnosed 6/06 with LBD. Almost continual downhill

slide no matter what drugs we try.

There's a magical tie to the land of our home, which the heart cannot

break, though the footsteps may roam. Eliza Cook