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Pat,

Sending you and your family many good thoughts for recovery from all the

illness.  Hope all goes well for you and your Dad, and of course Bob.  Glad

you had a sister in law to help for now.  we are here.

Hugs,

Donna R 

Update on Bob & I

 

Hi all,

It continues to be a very rough road here for me with Bob at home. I

am battling a sinus infection with recurrent fevers over 100 degrees

although I have been on antibiotics for four days. Bob's sister is

staying until the 20th and then flies home to Houston to do her taxes.

One good thing is Bob has been started on Klonopin at bedtime and it

is helping us both get some sleep.

My Dad had emergency surgery Saturday morning to remove 5 feet of his

colon that had perforated and died. He is being kept sedated and on a

respirator for a few days to make it easier on his heart. He is in

ICU at the Milwaukee VA hospital. Please pray for him, especially

that he not be in alot of pain. Dad is 89 years old. His name is

. I am his Power of Attorney. So this is another great

challenge I do not know if I can handle!

More later,

Pat M.

58, Wife/Caregiver of Bob 75, dx PD 2003, LBD 2009, Right hip

replacement surgery 01/09/12 now at home with me.

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Pat,

Sending you and your family many good thoughts for recovery from all the

illness.  Hope all goes well for you and your Dad, and of course Bob.  Glad

you had a sister in law to help for now.  we are here.

Hugs,

Donna R 

Update on Bob & I

 

Hi all,

It continues to be a very rough road here for me with Bob at home. I

am battling a sinus infection with recurrent fevers over 100 degrees

although I have been on antibiotics for four days. Bob's sister is

staying until the 20th and then flies home to Houston to do her taxes.

One good thing is Bob has been started on Klonopin at bedtime and it

is helping us both get some sleep.

My Dad had emergency surgery Saturday morning to remove 5 feet of his

colon that had perforated and died. He is being kept sedated and on a

respirator for a few days to make it easier on his heart. He is in

ICU at the Milwaukee VA hospital. Please pray for him, especially

that he not be in alot of pain. Dad is 89 years old. His name is

. I am his Power of Attorney. So this is another great

challenge I do not know if I can handle!

More later,

Pat M.

58, Wife/Caregiver of Bob 75, dx PD 2003, LBD 2009, Right hip

replacement surgery 01/09/12 now at home with me.

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Pat,

Sending you and your family many good thoughts for recovery from all the

illness.  Hope all goes well for you and your Dad, and of course Bob.  Glad

you had a sister in law to help for now.  we are here.

Hugs,

Donna R 

Update on Bob & I

 

Hi all,

It continues to be a very rough road here for me with Bob at home. I

am battling a sinus infection with recurrent fevers over 100 degrees

although I have been on antibiotics for four days. Bob's sister is

staying until the 20th and then flies home to Houston to do her taxes.

One good thing is Bob has been started on Klonopin at bedtime and it

is helping us both get some sleep.

My Dad had emergency surgery Saturday morning to remove 5 feet of his

colon that had perforated and died. He is being kept sedated and on a

respirator for a few days to make it easier on his heart. He is in

ICU at the Milwaukee VA hospital. Please pray for him, especially

that he not be in alot of pain. Dad is 89 years old. His name is

. I am his Power of Attorney. So this is another great

challenge I do not know if I can handle!

More later,

Pat M.

58, Wife/Caregiver of Bob 75, dx PD 2003, LBD 2009, Right hip

replacement surgery 01/09/12 now at home with me.

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Dear Pat,

You sure have so much on your plate. I don't know why, but when it rains, it

pours.

Will send up lots of prayers for all of you. Glad you have help, even if it's

only for another day.

Hugs from NY,

Helene

>

> Hi all,

>

> It continues to be a very rough road here for me with Bob at home. I

> am battling a sinus infection with recurrent fevers over 100 degrees

> although I have been on antibiotics for four days. Bob's sister is

> staying until the 20th and then flies home to Houston to do her taxes.

> One good thing is Bob has been started on Klonopin at bedtime and it

> is helping us both get some sleep.

>

> My Dad had emergency surgery Saturday morning to remove 5 feet of his

> colon that had perforated and died. He is being kept sedated and on a

> respirator for a few days to make it easier on his heart. He is in

> ICU at the Milwaukee VA hospital. Please pray for him, especially

> that he not be in alot of pain. Dad is 89 years old. His name is

> . I am his Power of Attorney. So this is another great

> challenge I do not know if I can handle!

>

> More later,

>

> Pat M.

>

> 58, Wife/Caregiver of Bob 75, dx PD 2003, LBD 2009, Right hip

> replacement surgery 01/09/12 now at home with me.

>

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Dear Pat,

You sure have so much on your plate. I don't know why, but when it rains, it

pours.

Will send up lots of prayers for all of you. Glad you have help, even if it's

only for another day.

Hugs from NY,

Helene

>

> Hi all,

>

> It continues to be a very rough road here for me with Bob at home. I

> am battling a sinus infection with recurrent fevers over 100 degrees

> although I have been on antibiotics for four days. Bob's sister is

> staying until the 20th and then flies home to Houston to do her taxes.

> One good thing is Bob has been started on Klonopin at bedtime and it

> is helping us both get some sleep.

>

> My Dad had emergency surgery Saturday morning to remove 5 feet of his

> colon that had perforated and died. He is being kept sedated and on a

> respirator for a few days to make it easier on his heart. He is in

> ICU at the Milwaukee VA hospital. Please pray for him, especially

> that he not be in alot of pain. Dad is 89 years old. His name is

> . I am his Power of Attorney. So this is another great

> challenge I do not know if I can handle!

>

> More later,

>

> Pat M.

>

> 58, Wife/Caregiver of Bob 75, dx PD 2003, LBD 2009, Right hip

> replacement surgery 01/09/12 now at home with me.

>

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Dear Pat,

You sure have so much on your plate. I don't know why, but when it rains, it

pours.

Will send up lots of prayers for all of you. Glad you have help, even if it's

only for another day.

Hugs from NY,

Helene

>

> Hi all,

>

> It continues to be a very rough road here for me with Bob at home. I

> am battling a sinus infection with recurrent fevers over 100 degrees

> although I have been on antibiotics for four days. Bob's sister is

> staying until the 20th and then flies home to Houston to do her taxes.

> One good thing is Bob has been started on Klonopin at bedtime and it

> is helping us both get some sleep.

>

> My Dad had emergency surgery Saturday morning to remove 5 feet of his

> colon that had perforated and died. He is being kept sedated and on a

> respirator for a few days to make it easier on his heart. He is in

> ICU at the Milwaukee VA hospital. Please pray for him, especially

> that he not be in alot of pain. Dad is 89 years old. His name is

> . I am his Power of Attorney. So this is another great

> challenge I do not know if I can handle!

>

> More later,

>

> Pat M.

>

> 58, Wife/Caregiver of Bob 75, dx PD 2003, LBD 2009, Right hip

> replacement surgery 01/09/12 now at home with me.

>

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Guest guest

Pat,

I just wanted to tell you that many of us are praying for you. You

definitely have a lot on your hands, but you must take care of yourself

first or you will not be able to continue helping Bob or your Dad. Being

the administrator of a will can be very trying. I do not know your

circumstances very well, so all I can say is try and get as much help as you

can and get yourself better. I really feel for you right now, but with all

the prayers you get I am sure that will help. I took care of my husband for

11 years and when other things came up in life such as you have right now

with your dad, sometimes it was impossible to handle all of it.

Take care and my prayers are with you.

Bernie Ford

Gold River, CA

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Guest guest

Pat,

I just wanted to tell you that many of us are praying for you. You

definitely have a lot on your hands, but you must take care of yourself

first or you will not be able to continue helping Bob or your Dad. Being

the administrator of a will can be very trying. I do not know your

circumstances very well, so all I can say is try and get as much help as you

can and get yourself better. I really feel for you right now, but with all

the prayers you get I am sure that will help. I took care of my husband for

11 years and when other things came up in life such as you have right now

with your dad, sometimes it was impossible to handle all of it.

Take care and my prayers are with you.

Bernie Ford

Gold River, CA

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  • 2 weeks later...
Guest guest

Hi Pat,

The rehab may not have orders for physical or occupational therapy.

Sometimes the orders are a bit slow in coming. Some rehabs want the orders

to come from their house doctor, who may only be available for emergencies

on weekends.

Check with the head nurse on the floor and tell her/him that you want to

see the PT or OT orders. If you are told that there aren't any, insist on

seeing the doctor today. If you aren't satisfied with the house doctor,

call your own physician and ask if he/she would intervene with this doc or

would supply PT/OT orders for the rehab himself/herself. You should have

been given copies of your husband's discharge papers upon leaving the

hospital. Orders for further rehab should have been part of those papers.

If there aren't any such orders in those papers, the rehab can't begin

PT/OT without them or new orders. They will be concerned about liability,

which is why they don't want to use the walker or try anything that might

result in a fall.

If you are not happy with the rehab's doctor, and if your own doctor is

willing, insist that they take orders from your doc. In a rehab, you have

to be a bit pushy about your LO's care. Keep a running dialogue with the

nurse management. If they are doing something you don't like or not doing

something you want done, say it clearly and firmly. Worst case, you have

the right to move your husband to a different facility of this one becomes

a problem. Just, now that you have an idea of what to expect, ask a lot of

questions before you make a move. Also, be at any therapy sessions that

you can. This is important because, if he is to come home, you will need

to continue the therapy.

Good luck. Stay strong.

Kate

On Sat, Mar 31, 2012 at 3:03 PM, Mayhew wrote:

> **

>

>

> Hi Everyone,

> My husband Bob was transferred to a rehab center Wed. March 28th after

> a week in the hospital for a strep infection in his blood. He had a

> very tough two days at first, not sleeping at night, very restless and

> confused. Unable to feed himself for the two days. He is finally

> coming around a little now and able to feed himself Friday and today.

> He is so weak and has declined so that they are using a hoyer lift to

> transfer him from bed to wheelchair. Not even trying to get him up to

> walk or transfer with the walker, although they did do it that way in

> the hospital. Physical Therapy in hospital had him up and walking in

> the hall with the walker. This rehab center is not even trying to do

> that with him because he was so bad the first two days he was there.

> I am going in to help him eat his meal at noon each day and stay an

> hour or two to visit and explain about LBD to the staff. This is so

> hard to see how he has gone downhill the last week and a half.

> Keeping on keeping on.

> Pat M.

> Wife/Caregiver of Bob 75, dx PD 2003, LBD 2009

>

>

--

Kate Knapp, OIT

University of Minnesota

You were born with certain gifts and talents.

In kindergarten you were taught to share.

The world needs all of the gifts it can get.

Don’t be shy.

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Guest guest

Hi Pat,

The rehab may not have orders for physical or occupational therapy.

Sometimes the orders are a bit slow in coming. Some rehabs want the orders

to come from their house doctor, who may only be available for emergencies

on weekends.

Check with the head nurse on the floor and tell her/him that you want to

see the PT or OT orders. If you are told that there aren't any, insist on

seeing the doctor today. If you aren't satisfied with the house doctor,

call your own physician and ask if he/she would intervene with this doc or

would supply PT/OT orders for the rehab himself/herself. You should have

been given copies of your husband's discharge papers upon leaving the

hospital. Orders for further rehab should have been part of those papers.

If there aren't any such orders in those papers, the rehab can't begin

PT/OT without them or new orders. They will be concerned about liability,

which is why they don't want to use the walker or try anything that might

result in a fall.

If you are not happy with the rehab's doctor, and if your own doctor is

willing, insist that they take orders from your doc. In a rehab, you have

to be a bit pushy about your LO's care. Keep a running dialogue with the

nurse management. If they are doing something you don't like or not doing

something you want done, say it clearly and firmly. Worst case, you have

the right to move your husband to a different facility of this one becomes

a problem. Just, now that you have an idea of what to expect, ask a lot of

questions before you make a move. Also, be at any therapy sessions that

you can. This is important because, if he is to come home, you will need

to continue the therapy.

Good luck. Stay strong.

Kate

On Sat, Mar 31, 2012 at 3:03 PM, Mayhew wrote:

> **

>

>

> Hi Everyone,

> My husband Bob was transferred to a rehab center Wed. March 28th after

> a week in the hospital for a strep infection in his blood. He had a

> very tough two days at first, not sleeping at night, very restless and

> confused. Unable to feed himself for the two days. He is finally

> coming around a little now and able to feed himself Friday and today.

> He is so weak and has declined so that they are using a hoyer lift to

> transfer him from bed to wheelchair. Not even trying to get him up to

> walk or transfer with the walker, although they did do it that way in

> the hospital. Physical Therapy in hospital had him up and walking in

> the hall with the walker. This rehab center is not even trying to do

> that with him because he was so bad the first two days he was there.

> I am going in to help him eat his meal at noon each day and stay an

> hour or two to visit and explain about LBD to the staff. This is so

> hard to see how he has gone downhill the last week and a half.

> Keeping on keeping on.

> Pat M.

> Wife/Caregiver of Bob 75, dx PD 2003, LBD 2009

>

>

--

Kate Knapp, OIT

University of Minnesota

You were born with certain gifts and talents.

In kindergarten you were taught to share.

The world needs all of the gifts it can get.

Don’t be shy.

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  • 1 month later...
Guest guest

Bob is not doing well. He is still in a rehab center. His mind is

almost totally gone. He is in his own little Lewy World. Sometimes

he can answer a question with a yes or no answer, such as does your

leg hurt? Other times he does not respond appropriately at all. He

can no longer feed himself without assistance. He starts but spills

everything all over himself and drops the spoon or fork. He is unable

to stand, and it takes two CNA's to transfer him from bed to

wheelchair with a slide board. His dementia is preventing him from

cooperating much with the physical therapy. The second surgery and

anesthesia has destroyed what little mind he had left. There is no

way I could bring him home to care for the state he is in. I have

applied for Medicaid for him to stay there in the nursing home part

when his Medicare Advantage plan comes to an end for rehab, which will

probably be in 14 to 21 days. He was accepted for Medicaid my

attorney told me today, but the county has not determined what our

copay will be yet, so I do not know yet how much money I will have to

live on. I will need to get a job I think to be able to live.

I am not doing so good. I am laid up with a blood clot in a

superficial varicose vein in my right leg behind the knee and have to

stay off it and keep it elevated as much as possible. So I am not

able to go to see Bob as much as I was. His twin sister flew home to

Miami FL on Sunday after a week here. She teared up on saying

good-bye to Bob and said she felt like she was " leaving a baby

behind. "

Everything is so sad and grey now. I am feeling hopeless

Please pray for us, we sure need God's help,

Pat M.

59, Wife/caregiver of Bob, 76, dx PD 2003, LBD 2009, now in Rehab

Center Post Second Hip Replacement Surgery April 11, 2012

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Guest guest

Pat,

It's heartbreaking to read this post. I am do sad to hear this news about

bob's decline....

Hang in there - you are not alone ! You will be in my thoughts and prayers.

Keep us posted !!

Judy

> **

>

>

> Bob is not doing well. He is still in a rehab center. His mind is

> almost totally gone. He is in his own little Lewy World. Sometimes

> he can answer a question with a yes or no answer, such as does your

> leg hurt? Other times he does not respond appropriately at all. He

> can no longer feed himself without assistance. He starts but spills

> everything all over himself and drops the spoon or fork. He is unable

> to stand, and it takes two CNA's to transfer him from bed to

> wheelchair with a slide board. His dementia is preventing him from

> cooperating much with the physical therapy. The second surgery and

> anesthesia has destroyed what little mind he had left. There is no

> way I could bring him home to care for the state he is in. I have

> applied for Medicaid for him to stay there in the nursing home part

> when his Medicare Advantage plan comes to an end for rehab, which will

> probably be in 14 to 21 days. He was accepted for Medicaid my

> attorney told me today, but the county has not determined what our

> copay will be yet, so I do not know yet how much money I will have to

> live on. I will need to get a job I think to be able to live.

>

> I am not doing so good. I am laid up with a blood clot in a

> superficial varicose vein in my right leg behind the knee and have to

> stay off it and keep it elevated as much as possible. So I am not

> able to go to see Bob as much as I was. His twin sister flew home to

> Miami FL on Sunday after a week here. She teared up on saying

> good-bye to Bob and said she felt like she was " leaving a baby

> behind. "

> Everything is so sad and grey now. I am feeling hopeless

> Please pray for us, we sure need God's help,

> Pat M.

> 59, Wife/caregiver of Bob, 76, dx PD 2003, LBD 2009, now in Rehab

> Center Post Second Hip Replacement Surgery April 11, 2012

>

>

--

Sent from Gmail Mobile

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Guest guest

Dear Pat,

My heart is breaking as I read this. Please take good care of yourself.

Sending up lots of prayers and hugs from NY,

Helene

>

> Bob is not doing well. He is still in a rehab center. His mind is

> almost totally gone. He is in his own little Lewy World. Sometimes

> he can answer a question with a yes or no answer, such as does your

> leg hurt? Other times he does not respond appropriately at all. He

> can no longer feed himself without assistance. He starts but spills

> everything all over himself and drops the spoon or fork. He is unable

> to stand, and it takes two CNA's to transfer him from bed to

> wheelchair with a slide board. His dementia is preventing him from

> cooperating much with the physical therapy. The second surgery and

> anesthesia has destroyed what little mind he had left. There is no

> way I could bring him home to care for the state he is in. I have

> applied for Medicaid for him to stay there in the nursing home part

> when his Medicare Advantage plan comes to an end for rehab, which will

> probably be in 14 to 21 days. He was accepted for Medicaid my

> attorney told me today, but the county has not determined what our

> copay will be yet, so I do not know yet how much money I will have to

> live on. I will need to get a job I think to be able to live.

>

> I am not doing so good. I am laid up with a blood clot in a

> superficial varicose vein in my right leg behind the knee and have to

> stay off it and keep it elevated as much as possible. So I am not

> able to go to see Bob as much as I was. His twin sister flew home to

> Miami FL on Sunday after a week here. She teared up on saying

> good-bye to Bob and said she felt like she was " leaving a baby

> behind. "

> Everything is so sad and grey now. I am feeling hopeless

> Please pray for us, we sure need God's help,

> Pat M.

> 59, Wife/caregiver of Bob, 76, dx PD 2003, LBD 2009, now in Rehab

> Center Post Second Hip Replacement Surgery April 11, 2012

>

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Guest guest

Pat,

You can count on prayers and a candle lit in your name.

God Bless

 

Jeff 

When you feel like giving up, remember why you held on for so long in the first

place. " ~ Unknown

>________________________________

>

>To: LBD_caringspouses ; LBDcaregivers

>Sent: Tuesday, May 8, 2012 10:11 PM

>Subject: Update on Bob & I

>

>

> 

>Bob is not doing well. He is still in a rehab center. His mind is

>almost totally gone. He is in his own little Lewy World. Sometimes

>he can answer a question with a yes or no answer, such as does your

>leg hurt? Other times he does not respond appropriately at all. He

>can no longer feed himself without assistance. He starts but spills

>everything all over himself and drops the spoon or fork. He is unable

>to stand, and it takes two CNA's to transfer him from bed to

>wheelchair with a slide board. His dementia is preventing him from

>cooperating much with the physical therapy. The second surgery and

>anesthesia has destroyed what little mind he had left. There is no

>way I could bring him home to care for the state he is in. I have

>applied for Medicaid for him to stay there in the nursing home part

>when his Medicare Advantage plan comes to an end for rehab, which will

>probably be in 14 to 21 days. He was accepted for Medicaid my

>attorney told me today, but the county has not determined what our

>copay will be yet, so I do not know yet how much money I will have to

>live on. I will need to get a job I think to be able to live.

>

>I am not doing so good. I am laid up with a blood clot in a

>superficial varicose vein in my right leg behind the knee and have to

>stay off it and keep it elevated as much as possible. So I am not

>able to go to see Bob as much as I was. His twin sister flew home to

>Miami FL on Sunday after a week here. She teared up on saying

>good-bye to Bob and said she felt like she was " leaving a baby

>behind. "

>Everything is so sad and grey now. I am feeling hopeless

>Please pray for us, we sure need God's help,

>Pat M.

>59, Wife/caregiver of Bob, 76, dx PD 2003, LBD 2009, now in Rehab

>Center Post Second Hip Replacement Surgery April 11, 2012

>

>

>

>

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Guest guest

Pat,

You can count on prayers and a candle lit in your name.

God Bless

 

Jeff 

When you feel like giving up, remember why you held on for so long in the first

place. " ~ Unknown

>________________________________

>

>To: LBD_caringspouses ; LBDcaregivers

>Sent: Tuesday, May 8, 2012 10:11 PM

>Subject: Update on Bob & I

>

>

> 

>Bob is not doing well. He is still in a rehab center. His mind is

>almost totally gone. He is in his own little Lewy World. Sometimes

>he can answer a question with a yes or no answer, such as does your

>leg hurt? Other times he does not respond appropriately at all. He

>can no longer feed himself without assistance. He starts but spills

>everything all over himself and drops the spoon or fork. He is unable

>to stand, and it takes two CNA's to transfer him from bed to

>wheelchair with a slide board. His dementia is preventing him from

>cooperating much with the physical therapy. The second surgery and

>anesthesia has destroyed what little mind he had left. There is no

>way I could bring him home to care for the state he is in. I have

>applied for Medicaid for him to stay there in the nursing home part

>when his Medicare Advantage plan comes to an end for rehab, which will

>probably be in 14 to 21 days. He was accepted for Medicaid my

>attorney told me today, but the county has not determined what our

>copay will be yet, so I do not know yet how much money I will have to

>live on. I will need to get a job I think to be able to live.

>

>I am not doing so good. I am laid up with a blood clot in a

>superficial varicose vein in my right leg behind the knee and have to

>stay off it and keep it elevated as much as possible. So I am not

>able to go to see Bob as much as I was. His twin sister flew home to

>Miami FL on Sunday after a week here. She teared up on saying

>good-bye to Bob and said she felt like she was " leaving a baby

>behind. "

>Everything is so sad and grey now. I am feeling hopeless

>Please pray for us, we sure need God's help,

>Pat M.

>59, Wife/caregiver of Bob, 76, dx PD 2003, LBD 2009, now in Rehab

>Center Post Second Hip Replacement Surgery April 11, 2012

>

>

>

>

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Guest guest

Pat, this disease robs both the patient and those who love them of so many

aspects of life. It is frustating to realize we are so helpless against it. My

thoughts and prayers are with you and Bob. Please know you are not alone.

Best wishes,

Lynn in Florida

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

snip> Everything is so sad and grey now. I am feeling hopeless

> Please pray for us, we sure need God's help,

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Guest guest

Pat, this disease robs both the patient and those who love them of so many

aspects of life. It is frustating to realize we are so helpless against it. My

thoughts and prayers are with you and Bob. Please know you are not alone.

Best wishes,

Lynn in Florida

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

snip> Everything is so sad and grey now. I am feeling hopeless

> Please pray for us, we sure need God's help,

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Guest guest

Thinking about you and Bob, Pat.

Your Medicaid application went through pretty quickly. That's a bright

light. Mom's took 6 months. The nursing home was able to tell us what

Mom's monthly payment would be after Medicaid long before everything was

approved. They know the award criteria as well as the county social worker

does. It shouldn't be, but maybe the difference is in calculating what you

can have for your needs and then what the copay would be? Mom was single.

(After 40 years, " widow " seemed a bit much, so we always said she was

single.)

Sometimes, I think the caregiver gets sick or injured to tell us that we

can't fix everything. It's a very pointed reminder to " accept the things I

cannot change, change the things I can and the ability to know the

difference. "

When Mom's dementia got to its worst, acceptance of the situation and

recognition/gratitude for those small moments when we could smile or even

just be at peace made all the difference for me. I stopped trying to " fix "

or " preserve " Mom and concentrated on helping her through her passing

(which started long before she got pneumonia) and to look forward to the

next stage on her journey. It was an incredible experience. I hope you

are blessed in the same way I was.

Kate

> **

>

>

> Pat, this disease robs both the patient and those who love them of so many

> aspects of life. It is frustating to realize we are so helpless against it.

> My thoughts and prayers are with you and Bob. Please know you are not alone.

>

> Best wishes,

> Lynn in Florida

> ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

>

>

> snip> Everything is so sad and grey now. I am feeling hopeless

>

> > Please pray for us, we sure need God's help,

>

>

>

--

Kate Knapp

UMN - OIT

“When you're finished changing, you're finished.” - Ben lin

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Guest guest

Thinking about you and Bob, Pat.

Your Medicaid application went through pretty quickly. That's a bright

light. Mom's took 6 months. The nursing home was able to tell us what

Mom's monthly payment would be after Medicaid long before everything was

approved. They know the award criteria as well as the county social worker

does. It shouldn't be, but maybe the difference is in calculating what you

can have for your needs and then what the copay would be? Mom was single.

(After 40 years, " widow " seemed a bit much, so we always said she was

single.)

Sometimes, I think the caregiver gets sick or injured to tell us that we

can't fix everything. It's a very pointed reminder to " accept the things I

cannot change, change the things I can and the ability to know the

difference. "

When Mom's dementia got to its worst, acceptance of the situation and

recognition/gratitude for those small moments when we could smile or even

just be at peace made all the difference for me. I stopped trying to " fix "

or " preserve " Mom and concentrated on helping her through her passing

(which started long before she got pneumonia) and to look forward to the

next stage on her journey. It was an incredible experience. I hope you

are blessed in the same way I was.

Kate

> **

>

>

> Pat, this disease robs both the patient and those who love them of so many

> aspects of life. It is frustating to realize we are so helpless against it.

> My thoughts and prayers are with you and Bob. Please know you are not alone.

>

> Best wishes,

> Lynn in Florida

> ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

>

>

> snip> Everything is so sad and grey now. I am feeling hopeless

>

> > Please pray for us, we sure need God's help,

>

>

>

--

Kate Knapp

UMN - OIT

“When you're finished changing, you're finished.” - Ben lin

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(((((Pat))))). These are truly the hardest of times. I wanted you to know of

my prayers and deep concern for what you, Bob, and his careworkers

are soldiering through. -praying your clot dissolves and you can be up

and around soon! -praying that Bob is relieved of all discomfort and struggle.

And though it may sound like a flimsy platitude to some , I KNOW that

our God is big enough to walk through these days with you, strengthening

you and even showing you blessings throughout!! --Ida

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(((((Pat))))). These are truly the hardest of times. I wanted you to know of

my prayers and deep concern for what you, Bob, and his careworkers

are soldiering through. -praying your clot dissolves and you can be up

and around soon! -praying that Bob is relieved of all discomfort and struggle.

And though it may sound like a flimsy platitude to some , I KNOW that

our God is big enough to walk through these days with you, strengthening

you and even showing you blessings throughout!! --Ida

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Pat, Unfortunately I have been where you are but I did not have any health

issues of my own as you are experiencing. Take care of yourself as best you

can, knowing that he is being cared for at the home.

You are going through a rough time and I can't promise you that things will

get better for Bob but do the best you can to keep your chin up, recover and

then you will be back in shape to visit him and spend time together.

For 4 years I have been remembering LBD caregivers and patients in my

prayers and I am sure there are many more out there who do as well. I hope

and pray for better luck and happier days for you down the road. Leona

Leona: Caregiver for husband Ray, age 68, diagnosed 2/04 with Parkinson's

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

slide no matter what drugs we try. 5/2/08 Ray was placed in Sunrise Nursing

Home in Oswego, NY, 1 hour from home. So far, so good! Hardest thing I have

ever done in my life, however. 3/19/09 transferred to Samaritan Keep NH in

Watertown, NY closer to home. He passed peacefully at 5:18 am on April 14,

2009. I am handling it OK.

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Pat: Hope this helps:

Whenever you do not understand what's happening in your life, just close

your eyes, take a deep breath, and say, " God, I know it is your plan. Just

help me through it " . (Taken from on Facebook. )

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