Update on Dad

[Guest guest]

Hello:

I'm posting merely to try to work this out for myself and to get my

head around it all so to speak.

My dad is not doing well - cognitively or physically. In the

mornings and probably throughout the night, he is very disoriented

and he has had some not so serious falls (thank God). The nursing

home is doing the best that they can but I think my dad would

probably be much better placed in the dementia unit where the people

would be sicker certainly but perhaps he would be tended to a bit

more since more caregivers work in the unit. Don't get me wrong - my

dad isn't being poorly tended to - not really - but yesterday I had

to lose it with the nurses because I discovered from another resident

that he had found my dad on his knees in the washroom trying

(unsuccessfully) to get himself up. I also was angry because it was

11:40 in the morning and my dad still hadn't been changed out of his

pygamas and his adult diaper hadn't been changed. The nurse in

charge apologized profusely and promised to speak to the new part-

timer but for me the damage had been done.

My dad occasionally also lays the guilt trip on my mom for putting

him in there. Today my mom had a wedding shower to attend and he was

very upset about my mom going out when he was stuck in there and

about the fact that my mom was spending money they desperately needed

(not true by the way). My mom isn't good about putting what he says

into perspective so I end up having to placate her which isn't easy.

Today I visited my dad while my mom was at the shower and we played

cards. My dad used to be a card shark but now he has trouble keeping

track of what game we're playing or how much each card is worth.

It's very pitiful and it's all I can do to not break down while I'm

coaching him and keeping track of his cards for him. I know things

are different now but it still gets me every time. I don't think

I'll ever get used to my dad this way. Like all of us on this site,

I would do anything and give anything to have my dad back to the way

he was for just one month so he could do it all and I could watch him

and delight in the knowledge that he was living the life he should be

living after working so hard.

I had a sad moment with my dad this afternoon. Our conversation went

like this:

Dad: I'm just so confused here. It's like I don't know what I'm

doing anymore.

Me: I know. I know it must be scary and frustrating not to have all

the answers.

Dad: I just hate this place. I'm annoyed here.

Me: Dad I know you hate anywhere that isn't home but I need to

remind you of why you can't be home right now. You fell - a lot.

Your house isn't equipped to have you there now that moving is

difficult for you. Mom also was getting really sick while you were

at home. You saw that and we cried about it before you came here.

We tried so hard to have you home but in the end the doctors are

right. We can't have you home and not have help. I know how much

you worry about the cost of help.

Dad: I don't want anyone in the house and I don't want to be here.

This isn't me. I used to be smart and could keep track of stuff -

now everything just seems hard.

Me: It is hard because you have an illness that makes everything

hard. What's more - your brain tumor is back and that makes it even

harder for you. You still are smart. I'm so proud of how smart you

are.

Dad: I'm not smart. You know I'm not smart.

Me: Dad, you are smart. I mean it when I say I'm proud of you. I

have been given all the breaks because of you and mom. I grew up in

a great home, have a great education, a nice house, a fabulous

husband and kids that you and mom have helped us raise. I have all

that largely because of you. But, only if I'm very lucky will I be

as smart as you or have as much as you. To me, you are smarter than

I will ever be. Always...

At this point we both started crying and then my husband and kids

showed up. That stopped us crying real fast but the conversation has

been playing in my mind since.

I know this has become my refrain but I hate this bloody disease.

Thanks for listening. Every so often I need to get this out here.

Thanks for letting me do it in an atmosphere of complete acceptance

and understanding.

Abby

[Guest guest]

Dear Abby:

I just want to hug you and let you cry on my shoulder. This disease takes so

much away. You are right, there is an atmosphere of complete acceptance

here. The reason for it is that many of us have gone through the same thing our

LO's. The type of conversation you had with your dad is similar to what I had

with mine. It is very sad to see them struggle both with their body and their

mind.

The nh could be more effective with your dad. Is there a chance that he can

be put in another nh, not necessarily a dementia facility? I think I remember

you saying that this was a pretty good nh and you were happy he was accepted

here. Have you asked your mom if she found any problems with your dad's care

at the nh.? she has been there more than you and may have a more

comprehensive opinion. It is really discouraging when we find our LO's in less

than

perfect condition. You may try to butter up the staff to get them to do more

for

your dad, at least while he is there.

I remember my dad was also obsessed with " take me home " , " when are we

leaving? " . He was convinced he was going to come home with me if no one else

would

take him out of there. He used to command me to go: " We are leaving now!

You come with me! " They don't understand why they are at the hospital/nh and

probably don't remember all the problems they had at home.

I am praying for you and your family, Abby. Take care of yourself. Many

hugs and love,

Josie

[Guest guest]

Dear Abby

I cried with you when I read your email about your dad. My heart breaks for all

of you. I know one thing for sure is that you are a wonderful daughter. You were

so loving and affirming to your dad. Underneath his anger and frustrations, he

knows you are right. My faith is what keeps me semi-glued together and know that

I will be praying for you and your family. Lydia

Update on Dad

Hello:

I'm posting merely to try to work this out for myself and to get my

head around it all so to speak.

My dad is not doing well - cognitively or physically. In the

mornings and probably throughout the night, he is very disoriented

and he has had some not so serious falls (thank God). The nursing

home is doing the best that they can but I think my dad would

probably be much better placed in the dementia unit where the people

would be sicker certainly but perhaps he would be tended to a bit

more since more caregivers work in the unit. Don't get me wrong - my

dad isn't being poorly tended to - not really - but yesterday I had

to lose it with the nurses because I discovered from another resident

that he had found my dad on his knees in the washroom trying

(unsuccessfully) to get himself up. I also was angry because it was

11:40 in the morning and my dad still hadn't been changed out of his

pygamas and his adult diaper hadn't been changed. The nurse in

charge apologized profusely and promised to speak to the new part-

timer but for me the damage had been done.

My dad occasionally also lays the guilt trip on my mom for putting

him in there. Today my mom had a wedding shower to attend and he was

very upset about my mom going out when he was stuck in there and

about the fact that my mom was spending money they desperately needed

(not true by the way). My mom isn't good about putting what he says

into perspective so I end up having to placate her which isn't easy.

Today I visited my dad while my mom was at the shower and we played

cards. My dad used to be a card shark but now he has trouble keeping

track of what game we're playing or how much each card is worth.

It's very pitiful and it's all I can do to not break down while I'm

coaching him and keeping track of his cards for him. I know things

are different now but it still gets me every time. I don't think

I'll ever get used to my dad this way. Like all of us on this site,

I would do anything and give anything to have my dad back to the way

he was for just one month so he could do it all and I could watch him

and delight in the knowledge that he was living the life he should be

living after working so hard.

I had a sad moment with my dad this afternoon. Our conversation went

like this:

Dad: I'm just so confused here. It's like I don't know what I'm

doing anymore.

Me: I know. I know it must be scary and frustrating not to have all

the answers.

Dad: I just hate this place. I'm annoyed here.

Me: Dad I know you hate anywhere that isn't home but I need to

remind you of why you can't be home right now. You fell - a lot.

Your house isn't equipped to have you there now that moving is

difficult for you. Mom also was getting really sick while you were

at home. You saw that and we cried about it before you came here.

We tried so hard to have you home but in the end the doctors are

right. We can't have you home and not have help. I know how much

you worry about the cost of help.

Dad: I don't want anyone in the house and I don't want to be here.

This isn't me. I used to be smart and could keep track of stuff -

now everything just seems hard.

Me: It is hard because you have an illness that makes everything

hard. What's more - your brain tumor is back and that makes it even

harder for you. You still are smart. I'm so proud of how smart you

are.

Dad: I'm not smart. You know I'm not smart.

Me: Dad, you are smart. I mean it when I say I'm proud of you. I

have been given all the breaks because of you and mom. I grew up in

a great home, have a great education, a nice house, a fabulous

husband and kids that you and mom have helped us raise. I have all

that largely because of you. But, only if I'm very lucky will I be

as smart as you or have as much as you. To me, you are smarter than

I will ever be. Always...

At this point we both started crying and then my husband and kids

showed up. That stopped us crying real fast but the conversation has

been playing in my mind since.

I know this has become my refrain but I hate this bloody disease.

Thanks for listening. Every so often I need to get this out here.

Thanks for letting me do it in an atmosphere of complete acceptance

and understanding.

Abby

Welcome to LBDcaregivers.

------------------------------------------------------------------------------

[Guest guest]

Abby,

Let me say a couple things gently as I can. I don't believe they are

doing the best they can at the place your Dad is at. No patient should

still be in bed clothes at 11:30 if it is anything like the nh we were

at. They start at 5:30 or 6 AM and by 11:30 someone hasn't done their

work. It is lunch time and most people have been changed for a second

time. He should not, no matter where he is housed , be in that condition

and you should not have to accept that.

He shouldn't be on his knees' in the bathroom either. They have ways to

handle that. And if necessary, they need to put him in a chair or put

him close to the nurses station or put an alarm on his shirt. That is

just not acceptable to me after spending 14 months in the nh with my

Mom, that stuff happen when the place is either inadequately staffed or

staff isn't doing their job. {My opinion only!}

And I remember the first time I watched Mom play Yahoo {dice} or cards

with her day care group at the AD group. It occurred to me, when I did

things with her, I expected her to play normal. THe staff at the group

didn't worry about the real rules, although they generally followed

them. They just let everyone play in a way they had fun. If it took

extra rolls of the dice, or a few extra turns it didn't matter. And Mom

got to enjoy it instead of following the rules. She even got to win

once in a while. It was a real eye opener for me. I had not adjusted

to her world and used that in a lot of areas as I moved through 4 years

of care. I more tried to move into her world after that.

My daughter was raising her son and when Mom was with her, she just

naturally found that Mom's world was more like her son's world. And Mom

liked to be there too. So I had to rethink what I expected and it made

it easier for everyone including me. With me Mom was always reminded of

her short comings, at group and with Lori, she felt more as if she had

some control over her world. My expectations got in the way, and I

believe it will be easier for you and your Dad, while you are playing

cards or what ever, if you can move into his world. And I certainly

understand it is not easy to accept that his world has changed.

It is so hard to make your expectations MORE for those people who are

taking care of him, and who can understand, hopefully, and at the same

time make your expectations for him less as he is less able to handle

his world.

And I also believe he shouldn't be falling. I understand an occasional

fall, but that doesn't sound like what you are talking about. And I am

not convinced that a dementia unit will be " better " if the staff are not

doing what they need to be doing where he is now. (I am guessing the

dementia unit is at the same place.) As I am remembering they alway had

something good to tell me about the " why " something happen until I would

lose it.

I hope that you get the appropriate help and if your units are set up

like ours are, there are people there who should be able to help, SW,

or NDirector or charge nurse.

I hope this is helpful and is meant only to share with you my

experience. Good luck and kiss your Dad for me. He deserves to be

taken care of where ever he is at.

Donna

[Guest guest]

Abby,

The nursing home where we have my Mother is a complex that has

independent living, assisted living, memory loss unit, general nursing

care and two levels of Alzheimer's care. My Mother is in the high care

Alzheimer's unit. They are staffed for people needing more care.

They usually have my Mother in a wheelchair at the nurses station. She

doesn't like too much noise and she tries to stand with out help and

is at risk of falling. She has an alarm on her when she is in the

wheelchair and in bed. Her bed is also low so she doesn't have far to

fall. We had the nursing home buy an extra (we paid for it) alarm for

her bed that is a pad that goes under the mattress. My Mother kept

removing the portable alarm that clips on her clothes. Still, they

occasionally call and say that they have found her on the mat beside

her bed or on the bathroom floor. I guess she crawls to the bathroom.

One night when I was putting her to bed, she started to get out of bed

and told me this is how she gets on the floor. Part of me is glad that

she can get out of bed and the other part fears that she might hurt

herself. I know there is no way to completely stop the falls, but I

believe that the nursing home is trying their best. They have a

comittee that evaluates what devices should be used to help alleviate

falls.

It sounds like your dad needs a higher level of care, maybe their

dementia unit can supply that care.

[Guest guest]

Abby, thank for sharing this with us. I am soooooo sorry about what this

damned disease is doing to your family.

I do think it would be a good idea to have your father transfered to the

dementia unit as I'm hoping the caregivers there would have a better idea of

how to care for your father.

Sending you much strength.

Courage

Update on Dad

>Hello:

>

>I'm posting merely to try to work this out for myself and to get my

>head around it all so to speak.

>

> My dad is not doing well - cognitively or physically. In the

>mornings and probably throughout the night, he is very disoriented

>and he has had some not so serious falls (thank God). The nursing

>home is doing the best that they can but I think my dad would

>probably be much better placed in the dementia unit where the people

>would be sicker certainly but perhaps he would be tended to a bit

>more since more caregivers work in the unit. Don't get me wrong - my

>dad isn't being poorly tended to - not really - but yesterday I had

>to lose it with the nurses because I discovered from another resident

>that he had found my dad on his knees in the washroom trying

>(unsuccessfully) to get himself up. I also was angry because it was

>11:40 in the morning and my dad still hadn't been changed out of his

>pygamas and his adult diaper hadn't been changed. The nurse in

>charge apologized profusely and promised to speak to the new part-

>timer but for me the damage had been done.

>

>My dad occasionally also lays the guilt trip on my mom for putting

>him in there. Today my mom had a wedding shower to attend and he was

>very upset about my mom going out when he was stuck in there and

>about the fact that my mom was spending money they desperately needed

>(not true by the way). My mom isn't good about putting what he says

>into perspective so I end up having to placate her which isn't easy.

>

>Today I visited my dad while my mom was at the shower and we played

>cards. My dad used to be a card shark but now he has trouble keeping

>track of what game we're playing or how much each card is worth.

>It's very pitiful and it's all I can do to not break down while I'm

>coaching him and keeping track of his cards for him. I know things

>are different now but it still gets me every time. I don't think

>I'll ever get used to my dad this way. Like all of us on this site,

>I would do anything and give anything to have my dad back to the way

>he was for just one month so he could do it all and I could watch him

>and delight in the knowledge that he was living the life he should be

>living after working so hard.

>

>I had a sad moment with my dad this afternoon. Our conversation went

>like this:

>

>Dad: I'm just so confused here. It's like I don't know what I'm

>doing anymore.

>

>Me: I know. I know it must be scary and frustrating not to have all

>the answers.

>

>Dad: I just hate this place. I'm annoyed here.

>

>Me: Dad I know you hate anywhere that isn't home but I need to

>remind you of why you can't be home right now. You fell - a lot.

>Your house isn't equipped to have you there now that moving is

>difficult for you. Mom also was getting really sick while you were

>at home. You saw that and we cried about it before you came here.

>We tried so hard to have you home but in the end the doctors are

>right. We can't have you home and not have help. I know how much

>you worry about the cost of help.

>

>Dad: I don't want anyone in the house and I don't want to be here.

>This isn't me. I used to be smart and could keep track of stuff -

>now everything just seems hard.

>

>Me: It is hard because you have an illness that makes everything

>hard. What's more - your brain tumor is back and that makes it even

>harder for you. You still are smart. I'm so proud of how smart you

>are.

>

>Dad: I'm not smart. You know I'm not smart.

>

>Me: Dad, you are smart. I mean it when I say I'm proud of you. I

>have been given all the breaks because of you and mom. I grew up in

>a great home, have a great education, a nice house, a fabulous

>husband and kids that you and mom have helped us raise. I have all

>that largely because of you. But, only if I'm very lucky will I be

>as smart as you or have as much as you. To me, you are smarter than

>I will ever be. Always...

>

>At this point we both started crying and then my husband and kids

>showed up. That stopped us crying real fast but the conversation has

>been playing in my mind since.

>

>I know this has become my refrain but I hate this bloody disease.

>

>Thanks for listening. Every so often I need to get this out here.

>Thanks for letting me do it in an atmosphere of complete acceptance

>and understanding.

>

>Abby

>

>

>Welcome to LBDcaregivers.

>

>

>

>

[Guest guest]

what nursing home is your mother in and where is it located?

Kath in Toronto

Re: Update on Dad

> Abby,

>

> The nursing home where we have my Mother is a complex that has

> independent living, assisted living, memory loss unit, general nursing

> care and two levels of Alzheimer's care. My Mother is in the high care

> Alzheimer's unit. They are staffed for people needing more care.

>

> They usually have my Mother in a wheelchair at the nurses station. She

> doesn't like too much noise and she tries to stand with out help and

> is at risk of falling. She has an alarm on her when she is in the

> wheelchair and in bed. Her bed is also low so she doesn't have far to

> fall. We had the nursing home buy an extra (we paid for it) alarm for

> her bed that is a pad that goes under the mattress. My Mother kept

> removing the portable alarm that clips on her clothes. Still, they

> occasionally call and say that they have found her on the mat beside

> her bed or on the bathroom floor. I guess she crawls to the bathroom.

>

> One night when I was putting her to bed, she started to get out of bed

> and told me this is how she gets on the floor. Part of me is glad that

> she can get out of bed and the other part fears that she might hurt

> herself. I know there is no way to completely stop the falls, but I

> believe that the nursing home is trying their best. They have a

> comittee that evaluates what devices should be used to help alleviate

> falls.

>

> It sounds like your dad needs a higher level of care, maybe their

> dementia unit can supply that care.

>

>

>

>

> Welcome to LBDcaregivers.

>

>

>

>

>