rough day

[Guest guest]

My mil has been yelling almost all night now for four nights. During the day

she is either drowsing off or constantly complaining she feels ill,

something’s wrong, her head hurts, back hurts, leg hurts, hand hurts, etc.

And we are constantly in alarm mode trying to fix it all. As soon as it’s dark

she starts waking up and by bedtime (7pm) she is wide awake and chatty. She is

getting hard to feed, hard to give nebulizer treatments, hard to get to drink

water. It’s not because she physically cannot drink or eat – it’s because

she doesn’t LIKE the medicine and she doesn’t LIKE pureed food (she cannot

chew well enough now for semi solid diet) she doesn’t LIKE the nubulizer or

oxygen because it’s putting air in her head (she says). I am worn out, the

caregiver is worn out.

I am just venting because there really is not anything we can do about this –

unless there is some new wonder drug – we have tried about everything I think

except whatever it is they give them in those nursing homes when they are

sleeping all the time. Tonight we gave her the extra trazadone and also the

small dose of ativan. An hour later she is still yelling her high pitched voice

that penetrates everything – walls, pillows, earplugs. “Pleaseee help

meeeeeeee….†When I go in and ask what’s the matter she tells me nothing

is wrong and denies making any noise.

The last two weeks have been harder for her because she can’t eat real food

(instead of swallowing we find she is storing it in her cheeks then choking on

it and also when she has bm it’s very apparent she is not chewing her food at

all. Anyway that is what told me it was time to for help and the speech

pathologist person that saw her last year advised pureed diet so she doesn’t

choke on it. My mil hates it. I’ve been going to a lot of trouble trying to

make it as tasteful as possible – but she doesn’t care she doesn’t want it

until she can come do another evaluation at the end of the week. I even eat the

same food so she won’t feel alone, nope she won’t do it. I explain why

she must have food like that and how hard we are trying to make it taste good

and she smiles and laughs at me and tells me how cute I am. Actually that’s

another strange thing she watches me constantly and remarks how I look and how I

make her laugh. I tell her I’m so glad to make her laugh, rather do that than

anything else and keep that sense of humor. If I sit with her she will sleep

off and on but keeps waking and as she’s waking she’s yelling help me

please. My husband or the caregiver can sit with her and the same thing. As

SOON as we step out of the room she starts yelling again. I am worried that I

need to hire another caregiver so we can all get rest at night. And I’m also

worried someone is going to call the sheriff and complain about the noise. She

is very loud and we are out in the country – sound really travels out here.

The situation is getting so desperate I am even considering trying a small

amount of seroquel again – maybe THIS time she would have the desired effect?

My poor mil. She is fighting so hard. She cannot tell someone why she is the

way she is – she doesn’t remember why she can’t walk or swallow or

what’s the matter with her but I’m sure she understands she is losing it –

losing control over her body and mind and remembering less and less. Sometimes

I explain it’s because of the Parkinson’s and she looks at me and says

“Ohhhh is THAT what’s causing this. I didn’t know thatâ€. And the next

minute she is laughing at me I’m asking her to swallow her food and it strikes

her as hilarious. I feel so bad for her and I feel bad for feeing so worn out

and thinking how tired I am.

-Dorothy

[Guest guest]

Dorothy,

I promised my mom that I would keep her home. I told her she would be able

to die in her own bed. I believed that I could care for her better than

anyone else could. I was wrong.

Mom is now in the dementia unit of an SNF where she gets better care than I

could have provided and I get a good night's sleep (some of the time) before

going to work in the morning. Mom is sometimes more comfortable with a

couple of the aides than she is with her own daughters. And her day is

occupied so that she can be tired at night. Lots of activities. Yes, I

sometimes cry when I leave for the night. But I know that we are both

better off.

Just think about it.

BTW, Mom's roommate is a very sweet lady who continually says " help me, help

me. " If you ask her what she needs she says she doesn't know. " Help me,

help me " is mostly a comforting mantra for her. I wonder if that is

happening at your house.

Kathy

> **

>

>

> My mil has been yelling almost all night now for four nights. During the

> day she is either drowsing off or constantly complaining she feels ill,

> something’s wrong, her head hurts, back hurts, leg hurts, hand hurts, etc.

> And we are constantly in alarm mode trying to fix it all. As soon as it’s

> dark she starts waking up and by bedtime (7pm) she is wide awake and chatty.

> She is getting hard to feed, hard to give nebulizer treatments, hard to get

> to drink water. It’s not because she physically cannot drink or eat – it’s

> because she doesn’t LIKE the medicine and she doesn’t LIKE pureed food (she

> cannot chew well enough now for semi solid diet) she doesn’t LIKE the

> nubulizer or oxygen because it’s putting air in her head (she says). I am

> worn out, the caregiver is worn out.

>

> I am just venting because there really is not anything we can do about this

> – unless there is some new wonder drug – we have tried about everything I

> think except whatever it is they give them in those nursing homes when they

> are sleeping all the time. Tonight we gave her the extra trazadone and also

> the small dose of ativan. An hour later she is still yelling her high

> pitched voice that penetrates everything – walls, pillows, earplugs.

> “Pleaseee help meeeeeeee….” When I go in and ask what’s the matter she tells

> me nothing is wrong and denies making any noise.

>

> The last two weeks have been harder for her because she can’t eat real food

> (instead of swallowing we find she is storing it in her cheeks then choking

> on it and also when she has bm it’s very apparent she is not chewing her

> food at all. Anyway that is what told me it was time to for help and the

> speech pathologist person that saw her last year advised pureed diet so she

> doesn’t choke on it. My mil hates it. I’ve been going to a lot of trouble

> trying to make it as tasteful as possible – but she doesn’t care she doesn’t

> want it until she can come do another evaluation at the end of the week. I

> even eat the same food so she won’t feel alone, nope she won’t do it. I

> explain why she must have food like that and how hard we are trying to make

> it taste good and she smiles and laughs at me and tells me how cute I am.

> Actually that’s another strange thing she watches me constantly and remarks

> how I look and how I make her laugh. I tell her I’m so glad to make her

> laugh, rather do that than anything else and keep that sense of humor. If I

> sit with her she will sleep off and on but keeps waking and as she’s waking

> she’s yelling help me please. My husband or the caregiver can sit with her

> and the same thing. As SOON as we step out of the room she starts yelling

> again. I am worried that I need to hire another caregiver so we can all get

> rest at night. And I’m also worried someone is going to call the sheriff and

> complain about the noise. She is very loud and we are out in the country –

> sound really travels out here. The situation is getting so desperate I am

> even considering trying a small amount of seroquel again – maybe THIS time

> she would have the desired effect?

>

> My poor mil. She is fighting so hard. She cannot tell someone why she is

> the way she is – she doesn’t remember why she can’t walk or swallow or

> what’s the matter with her but I’m sure she understands she is losing it –

> losing control over her body and mind and remembering less and less.

> Sometimes I explain it’s because of the Parkinson’s and she looks at me and

> says “Ohhhh is THAT what’s causing this. I didn’t know that”. And the next

> minute she is laughing at me I’m asking her to swallow her food and it

> strikes her as hilarious. I feel so bad for her and I feel bad for feeing so

> worn out and thinking how tired I am.

>

> -Dorothy

>

>