Brunette?

michelesmith · Experienced user Joined: 28 Oct 2005 Posts: 71

Brunette,
Haven't heard from you in several days and wondering how you are doing? I know you were having a hard time last we heard from you and hope you are doing ok.

Michele
_________________
Michele

brunette · Posted: Sun Jan 21, 2007 1:28 pm Post subject: Re: Brunette?

Hi there.

I went to see my mum yesterday and was lucky to spend a few hours with her in hospital. She was , in her words "pissed off" that she was still there, instead of being in the hospice. We have told her that she's at the top of their waiting list but she thinks she's never going to get in there.

She had moments where she forgot what she wanted to say, and kept looking at her arm and hand and waving it about ( dont know what that's all about!)

Some of her facial bloating has gone down and she has not walked since Boxing Day. She is still catheterised which is giving her some discomfort and she's tearful. I think I saw her on a good day by all accounts.

I was able to discuss funeral arrangements with my step-dad and sister, which wasnt as difficult as I imagined. We dont know how long she has left, this is the most difficult part of this whole thing.

I appreciate you thinking of me, I do check the forum from time to time to keep informed of whats happening with everyone else. Youre all in my thoughts. Lots of love xxxxx Jen.

sara pokrass · Posted: Sun Jan 21, 2007 7:09 pm Post subject: Re: Brunette?

Hi Brunette,
is hospice over the pond a skilled nursing facility? Here in the States
"Hospice" is home care (for the most part). If you are over 65 years old and on the government Medicare health insurance program it will pay for health aides and nurses to come into your home. I'm the primary care
giver for my mother-in-law Doris in our home. Having an aide come to the home to help with personal care for an hour 4 or five times a week is
a tremendous support. Doris has not walked since Nov. 22.
Decadron and steroids to prevent brain swelling can cause puffiness of the face ( also a feeling of euphoria).
Doris also does a few odd things too. Tonight she put a towel over her
head. It was actually humorous. Where do these thoughts come from?
from sara, who is also on this journey
_________________
snep

michelesmith · Experienced user Joined: 28 Oct 2005 Posts: 71

Brunette,
Good to hear from you. You are in our thoughts.

Just to clarify for those that are searching--regardless of age, (at least in Alabama), if you are labeled as "teminally ill" and are looking for pallative care, you can get hospice services. This was a tremendous help to my family. Dad was only 56. This has to be the most unused, unknown, misinformation service--or at least it is that way in our area. We had NO IDEA what all hospice could and would do for us or that it did not cost my mother anything. The doctor's had suggested looking into hospice at least a month before we did, but they never really told us what they could do for us. And we were under the impression that we would be paying a lot for it since they would be coming to the home. They brought all of dad's meds (which they also paid for whatever the insurance did not cover--we were paying for them up to this point) as long as they were for pain or pallitive care. That means they would not pay for the temodor but basically everything else. They brought in bath chairs, hospital beds, walkers, helped my mom build a ramp for the wheel chair, had a chaplain that visited as often as mom wanted, did all the blood draws, came and gave dad baths, etc. And were a good source of telling us what was going on and what we could expect. I can't say enough about how much they did for us and how great they were. I really, really wish we had gotten them involved sooner. I was long distance and it was still a great comfort to know what all they were doing to help us through this ordeal.
_________________
Michele

brunette · Posted: Mon Jan 22, 2007 4:19 am Post subject: Re: Brunette?

Hello,

here in the UK, a hospice is a government or privately run home where terminally ill children or adults can go for either a day visit, a few weeks or if very sick , permanantly where they can see out their last days in comfort. The hospice we want to send mum to is called St Lukes, it costs approx £500 a week for patients to stay there.

This is charity funded, but the standard of care is excellent. Here in the UK we dont have to pay for hospital treatments. We pay for the National Health Service in our taxes, and although its not perfect, at least we know that we dont have to worry about costs.

We dont know if mum will stay in the hospice permanently as yet, but we would like her to come home and be under the care of MacMillan nurses, who come into your home approx 5-6 times a day to make sure mum would be comfortable. This would be an ideal situation for mum and the rest of the family. (touch wood!)

Chat soon, love to you all xxxx Jen

michelesmith · Experienced user Joined: 28 Oct 2005 Posts: 71

Brunette,
Thanks for the info. It sounds like your hospice is similar to our "assisted living" and your MacMillan nurses similar to our hospice. I hope your mom gets in soon. It is a great relief when you can know that your mom is being taken care of.
_________________
Michele

Michele Walker · New User Joined: 17 Jan 2007 Posts: 4

Hi Brunette,
My daughter found a site which I wish we found sooner that gave us some very useful and helpful information. You may want to view it. The URL is http://www.brainhospice.com/ This forum is also very informative. Dealing with this disease is very difficult. We were fortunate to be able to care for our loved one at home. I know my husband felt much more comfortable here. My prayers are with you and your family.
Michele

MERCYnotTIME · New User Joined: 01 Nov 2006 Posts: 6

hello B.
just reading some of your posts, it brings back many memories some good, some bad, non of either way i would trade for anything.

the answer is in the name i learned this after my mom passed,
wish i did sooner.

mercy NOT time
comfort not time.
dont concern your self with what do i have left to spend with her.
just spend it .

thinking of you.
me:.
_________________
lost then found, then lost again.............

brunette · Posted: Fri Jan 26, 2007 3:40 am Post subject: Re: Brunette?

Hello Mercy, thanks for your post.

Mum has been moved onto a different ward in the hospital and she now has a private room, for the time being at least.

My brothers are spending some quality time with her and I hope to see her again in a couple of weeks time. Sooner if its possible.

The worst thing I find about mums illness, is not knowing how much longer she has left, this waiting game is such a huge strain on us all. I appreciate all the replys people have sent, if only it could be for a happier reason that we all knew each other.

My love to you all as ever xxxx Jen.

MERCYnotTIME · New User Joined: 01 Nov 2006 Posts: 6

[quote="brunette"]

The worst thing I find about mums illness, is not knowing how much longer she has left, this waiting game is such a huge strain on us all.
My love to you all as ever xxxx Jen.[/quote]

Hello again B.

I notice someone posted the brain hospice website already for you to read.

while it is very difficult to read, if you are concerned about timelines,
that site is very scarily accurate. my mother seems to follow those steps almost like clock work.

this sickness is a HUGE strain on the family, an believe me your mother certainly feels horrible about it.
when my mother was a able to talk she who always try to say sorry, it was ridiculous , like I was her fault or something, 52 and struck down.. its not a fair sickness {like there is a fair one what a stupid thing to say Sad

}

the information is out there if you want it, that a big if.
I didn't know until it was to late. I wish I did,,,sometimes.. other times I'm glad I didn't its a hard choice like so many others in this fight...

one thing I did learn, I have spoken on this forum and other about it is how I dealt with her in the twilight days and hours,
Once she got to that point where we all knew it was not going to get any better,
I stopped talking about treatment and stopped telling her to fight,
We talked {more like she listened or putting in a few words and smiling in agreement}
about what was going on in my life {away from the hospital stuff you know? Work kids, traffic the mundane life stuff}

The bottom line is she's your mother her real soul purpose in life was to make sure you where ok,
regardless of what you may thought when you where younger, {I don’t know what kind of relationship you had good or bad} but the bottom line IS as a mom, deep down that was her sole true concern.
Talk to her in ways that let her know YOUR GOING to be ok, that’s All she wants to know.
Tell her not "you love her"
Instead tell her you know "she loves you"
My mother struggled over and over to try and speak those words she couldn’t speak very well by that point, and would choke when she tried {blasted fluid!!}
but once I'd say "mom I know you love me" she'd get the Christmas morning twinkle in her eyes' and smile,

Enough of my blithering idiotness.
I just want to help, I know what a painful time this is for you,
Hopefully you can take something away from my rambling cliché of a post..
_________________
lost then found, then lost again.............

brainman · Posted: Fri Jan 26, 2007 11:50 am Post subject: Re: Brunette?

Hi Jen,
I am so sorry to hear about your mother’s worsening condition.

You said something about hospice in one of your earlier messages. I the UK you do not have “at home” hospice care? That is almost totally the opposite of what is available in the USA. Here, it is very hard to find an in-patient hospice. Most of the hospices (at least in smaller towns) work out-patient (in the patient’s home).

Good bless you, Jen. Thanks for all the sharing and support you give to others here on the CancerForums.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

brunette · Posted: Sat Jan 27, 2007 3:32 pm Post subject: Re: Brunette?

Hi Brainman,

here in the UK our health service is very different from what you have in the States.

We can pay for private medical health care which is very good, but most people opt to use the National Health Service. This is severely underfunded by our Government (although they deny this) However our doctors and nurses do a very good job.

There are many many wonderful hospices around the country and we also have MacMillan nurses who come into your home and they are fantastic, but also underfunded.

In a way Im glad I dont live in a country where people have to worry about how to pay medical bills. Im happy to be making a small contribution to this forum and am honoured to have "met" so many lovely folks. Love as ever xxxx Jen.

	Cancer Forums Forum Index -> Brain Tumors Forum	All times are GMT - 5 Hours
Page 1 of 1

A website for discussions about any type of cancer, including lung cancer, breast cancer, mesothelioma, prostate cancer, laryngeal cancer, leukemia, lymphoma, multiple myeloma and others