Re: Update on my family and me

[Guest guest]

I am so sorry for the loss of your friend and your grandmother's fall. I

wish I was closer and more able, as it sounds like you really need some help

- now!

I'll keep you in my thoughts.

laurie

>

> Reply-To:

> Date: Wed, 12 Jan 2005 07:06:59 -0800 (PST)

> To: adultmito

> Subject: Update on my family and me

>

> Well, LONG time no chat, but things are wilder than ever here. For those of

> you who thought my life was complicated before, well, it wasnt haha.

>

> First, my client, Sheila, got her waiver finally she had been waiting on, so

> she could have waiver hours to have people drive her around (supportive

> living). Well, I was SUPPOSED to take just a few of the hours, but Sheila is

> a bit of a control freak, and panics when she has to work with people she

> doesnt really know, so I wound up having to add more and more waiver hours to

> my pile till finally I was working more hours than I could claim! I thought

> I was overwhelmed before, but then I was really overwhelmed. (btw the waiver

> hours were available for claiming, but my agency has this silly rule you cant

> claim over 40 hours (even if you work them!). I have had a problem over this

> one before......). Anyway, this was supposed to only go on till November

> when we found out what the status of all her hours was going to be for the

> next year, then she was supposed to find another driver anyway. Well,

> November came and went, and on December 1, on my grandmother's birthday, we

> found

> her on the floor with a broken hip! She had fallen during the night. So she

> had to have surgery on her hip the 2nd. We opted not to have rehab done in a

> facility, or have her go in a nursing home because I hate those places with a

> passion. My friends Sharlene and Jeanne were going to help with night respite

> and I was going to switch her from elder's choice to independent choices so

> she could get more hours and we could get the actual hours we needed respite

> for, covered. I did my part of the paperwork by the 7th, the day after she

> was out of the hospital! (I get on the ball, because you know the old adage,

> hurry up and wait really applies to government!) Anyway, we brought her home

> with inhome therapy. Well, things didnt go so well. Evidently coumadin was

> messing with her blood levels of her antidepressant and memory meds from as

> near as I could figure out, plus the stress of the surgery itself I am sure

> didnt help either (although the docs actually LISTENED! and took

> all the little mito precautions! I was so proud ) but anyway her

> dementia was made worse. They said her dementia was apt to get worse as a

> result of the surgery. Anyway, they were right........ So while she has

> recovered remarkably well from the surgery itself physically, all of it has

> taken a toll on her mentally, tho a lot of that has stabilized since she went

> off of the coumadin. Her sundowner's effect is very strong. Anyway, things

> went from bad to worse....... My friend Sharlene? She DIED! She had an

> aneurism burst on the 19th of December, followed by a massive stroke, and 3

> heart attacks. She was declared brain dead, and a do not resuscitate order

> was given, and she officially died at around 1:40 am the 20th. My friend

> Jeanne meantime, had some health issues come up where they think she may be

> getting a blocked carotid artery, so she cant help. is helping some,

> but the one night I got a break since helped (because of her work

> schedule,

> things are difficult for her, and Sharlene was her mother) Ruth and April had

> to stay over at her house. Meantime, the independent choices people, after

> repeated calling on my part, finally got back to me, and their nurse was out

> for a month after she had emergency surgery, and so she is running behind

> (naturally!) so it will be around early February at best estimation before

> she shows up. Oh, btw, after my grandmother's surgery, Sheila FINALLY had to

> get another waiver driver, however, since Sharlene was the one laying Sheila

> down at night, and was the one who was my mother's aide to boot, guess who now

> has full responsibility of my mother, and has to lay Sheila down most nights?

> You got it! ME! So I am still working around 28-30 hours a week with

> Sheila, have all of my mother's care, and no real respite with my grandmother,

> except for occasionally Jeanne's stepdaughter during the day and an occasional

> night with 's help. April and I are going nuts! Oh did I mention

> the fact that one of my favorite dogs got hurt accidentally on the evening of

> the 23rd, and died around midnight of Christmas eve? It has all been

> perfectly horrid. I work around 12-14 hours a day, 7 days a week, and that

> is if nothing goes wrong in the middle of the night with my grandmother!

>

> For some reason, along with all the extra work, and the fact that right now I

> cant afford the good medication, and dont have the time to even go buy the

> cheap coq and b vitamins, I am in a crash........

>

>

> Just hanging on till February........

>

> HUGS to all

>

>

>

>

>

>

>

>

>

[Guest guest]

My goodness, you're in our thoughts, you need all the good vibes you

can get! I thought I had it a bit rough with my uncle dying and my

baby getting pneumonia over the holidays!

Please try to take care of yourself, hopefully February will come

real soon

At least try to take a " mental health break " - although it may seem

inappropriate with all the issues you are dealing with (so sorry

about your friend and your grandmother's hip), you need to try for a

little break for yourself.

I hope you can find some $$ for your supplements soon, maybe you

could convince Tishcon to send some " samples " . I wish the UMDF had a

medication (supplement) program, the MGF (myasthenia gravis

foundation) is a HUGE advocate for their orphan drug, Mestinon, and

is in tight contact with the manufacturer, making sure there aren't

shortages and that people who can't afford it get it.

Take care,

RH

> Well, LONG time no chat, but things are wilder than ever here.

For those of you who thought my life was complicated before, well, it

wasnt haha.

>

> First, my client, Sheila, got her waiver finally she had been

waiting on, so she could have waiver hours to have people drive her

around (supportive living). Well, I was SUPPOSED to take just a few

of the hours, but Sheila is a bit of a control freak, and panics when

she has to work with people she doesnt really know, so I wound up

having to add more and more waiver hours to my pile till finally I

was working more hours than I could claim! I thought I was

overwhelmed before, but then I was really overwhelmed. (btw the

waiver hours were available for claiming, but my agency has this

silly rule you cant claim over 40 hours (even if you work them!). I

have had a problem over this one before......). Anyway, this was

supposed to only go on till November when we found out what the

status of all her hours was going to be for the next year, then she

was supposed to find another driver anyway. Well, November came and

went, and on December 1, on my grandmother's birthday, we found

> her on the floor with a broken hip! She had fallen during the

night. So she had to have surgery on her hip the 2nd. We opted not

to have rehab done in a facility, or have her go in a nursing home

because I hate those places with a passion. My friends Sharlene and

Jeanne were going to help with night respite and I was going to

switch her from elder's choice to independent choices so she could

get more hours and we could get the actual hours we needed respite

for, covered. I did my part of the paperwork by the 7th, the day

after she was out of the hospital! (I get on the ball, because you

know the old adage, hurry up and wait really applies to government!)

Anyway, we brought her home with inhome therapy. Well, things didnt

go so well. Evidently coumadin was messing with her blood levels of

her antidepressant and memory meds from as near as I could figure

out, plus the stress of the surgery itself I am sure didnt help

either (although the docs actually LISTENED! and took

> all the little mito precautions! I was so proud ) but anyway

her dementia was made worse. They said her dementia was apt to get

worse as a result of the surgery. Anyway, they were right........

So while she has recovered remarkably well from the surgery itself

physically, all of it has taken a toll on her mentally, tho a lot of

that has stabilized since she went off of the coumadin. Her

sundowner's effect is very strong. Anyway, things went from bad to

worse....... My friend Sharlene? She DIED! She had an aneurism

burst on the 19th of December, followed by a massive stroke, and 3

heart attacks. She was declared brain dead, and a do not

resuscitate order was given, and she officially died at around 1:40

am the 20th. My friend Jeanne meantime, had some health issues come

up where they think she may be getting a blocked carotid artery, so

she cant help. is helping some, but the one night I got a

break since helped (because of her work schedule,

> things are difficult for her, and Sharlene was her mother) Ruth

and April had to stay over at her house. Meantime, the independent

choices people, after repeated calling on my part, finally got back

to me, and their nurse was out for a month after she had emergency

surgery, and so she is running behind (naturally!) so it will be

around early February at best estimation before she shows up. Oh,

btw, after my grandmother's surgery, Sheila FINALLY had to get

another waiver driver, however, since Sharlene was the one laying

Sheila down at night, and was the one who was my mother's aide to

boot, guess who now has full responsibility of my mother, and has to

lay Sheila down most nights? You got it! ME! So I am still

working around 28-30 hours a week with Sheila, have all of my

mother's care, and no real respite with my grandmother, except for

occasionally Jeanne's stepdaughter during the day and an occasional

night with 's help. April and I are going nuts! Oh did I

mention

> the fact that one of my favorite dogs got hurt accidentally on the

evening of the 23rd, and died around midnight of Christmas eve? It

has all been perfectly horrid. I work around 12-14 hours a day, 7

days a week, and that is if nothing goes wrong in the middle of the

night with my grandmother!

>

> For some reason, along with all the extra work, and the fact that

right now I cant afford the good medication, and dont have the time

to even go buy the cheap coq and b vitamins, I am in a crash........

>

>

> Just hanging on till February........

>

> HUGS to all

>

>

>

>

>

>

>

>

>

[Guest guest]

Thanks Laurie! I do appreciate it.

Laureta Fitzgerald lfitzger@...> wrote:

I am so sorry for the loss of your friend and your grandmother's fall. I

wish I was closer and more able, as it sounds like you really need some help

- now!

I'll keep you in my thoughts.

laurie

[Guest guest]

Hi ,

I'm so far behind with Mitoldies for which I apologize. Some of the

reason is my need to be careful with the use of the computer now as it

seems to have a visual effect which worries me with the deafness.

Other reasons are because I'm currently working hard on a worthy cause

for my state which is flowing to the national level. It can have an

indirect affect on Mito patients but it's not specifically Mito. I'm

involved with an effort to improve the needs of those with hearing loss.

I'm so sorry that your life is topsy turvy. I want you to know that I

may be less active here but that doesn't mean I care less. I'm glad I

found this post because I want you to know that my thoughts are with you.

Please take care.

Alice