EATING, COOKING AND CLEANING........
Well I'm still struggling with this choking business...I should rephrase that...WE are still struggling.........Mick's fine with the first few mouthfuls then suddenly the choking starts. Talj has been a great help; because of what happened to Rose she has contact with a lot of Brain Tumour Forums; she has posted about Mick to see if anyone has any ideas. The suggestion was made that a Speech Therapist may help; sometimes when the body has had enough food in BT patients it can mean they continue to eat but that the food goes into their lungs instead of their stomach, this is what causes the choking. Also a "swallowing xray" can be done that shows if this is what is happening; if it is... one solution would be a feeding tube. Well as many of you may know we have in fact been down the "Speech Therapist" route......you'll find one of the posts about it here.....TONGUE IN CHEEK....just click for a reminder. Even if the xray was done I know Mick wouldn't enjoy a feeding tube. It would make things a lot more difficult moving him around too.........also Mick's enjoyment of food comes from the taste of it...it wouldn't be the same down a tube. Besides who am I kidding.........I'm 100% sure that our doctor would not even consider such a thing..........even if I have called him in fearing chest or urine infections or about the choking and dehydration, nothing really has been done......I've never once seen a stethoscope come out to "sound" his chest...no blood pressure taken....no temperature taken....in fact, as with the odd visit from a District Nurse (not since last year), the Doctor has never TOUCHED Mick. When I showed him the pressure area on Mick's chest a few weeks back the Doctor never attempted to help me move Mick's clenched arm so that he could see it. If I couldn't have managed it...the Doctor wouldn't have even seen what I was talking about. Oh for a Doctor like Hugh Laurie portrays in the series "House".... his bedside mannner may not be the greatest but BOY! does he get things done.....I wonder if there are any like him anywhere in this world!
I've decided that I'm going down the "little and often" route....well as much as Mick's awake periods will allow. I'm going to make varied savoury and sweet courses up in little ramekin dishes.....they will then be almost "instantly" available if Mick does want a little to eat. Not much I can do about his liquid intake...he is not "weeing" much at all. This week just once a day.....and I have to coax him to do that. It goes to show though that he is still understanding me in as much that the "coaxing" works!
We have no visitors this weekend so I'm hoping to catch up on a few jobs; I've some potting on to do of some seedlings (Mick can sit in the kitchen and watch me doing that); I've also got to sort out the reams of photos on the computer...they are a bit all over the place at the moment; I want to get some "labels" on my old posts too to make it easier to refer back to; if we do have some nice weather (raining at the moment) we shall of course head out into the garden...............with any luck all of these things will keep me so busy that there won't be time to clean the oven...........so many times I've intended to do it and got (very easily) sidetracked !!!! 
I must do it soon though before the food starts walking out of the oven in disgust!
And if you've got a few minutes to spare and have a chore that you're trying to "put off" you could always pay a visit to the Team Smarties HQ or The Prints for Rose Online Store.
8 visitors have commented:
Ruth, I'm very depressed and saddened by the lack of care and support you and Mick receive. It seems so unfair :(
I hope you enjoy getting caught up on all yoyr chores but i don't envy you the oven cleaning!!
{{HUGS}} xx
My Dear Ruth,
{{{HUGE HUGE HUGS}}} to you and Mick. I'm still working on getting some more information for you both. Sadly, you are not alone in the treatment you receive when it comes to BT patients....this is a whole other area that disgusts me! But we wont go down that road! I am certain we will find some more tips for coping with these choking episodes! I think your little and often route is the best for both you and Mick and you are always so prepared for things, the little dishes are a clever idea :o)
Now,cleaning?? I am sure you're not supposed to do that sort of thing!?! Infact I didn't even know ovens needed to be cleaned ;o)
I hope that Mick manages a little more food throughout the day and that you get all you want done around the house {{{HUGS}}} xxx
As I sit over here in Canada and having gone the caregiving route for some years, I am weeping knowing what you are going through. I do wish I were a little closer as I'd certainly help you and give you a little break.
I am appalled at the lack of attention you are getting from the medical end of things. It's absolutely just terrible and my heart goes out to you.
{{{{BIG GIANT HUGS}}}} Ruth! And I really mean that.
I got a new stove about a year ago and it has a self cleaning oven and I just can't believe the work it's saved me. There's still a bit of scrubbing to do at the end but certainly not the mess I've been used to for years and years.
I too am appalled! My mum has been lucky with her doctors although there has been some shockers!
I will ask her about eating thing later when she gets back, i keep forgetting that she probably knows this stuff! I know its wasn't the same sort of tumour, but she will no doubt come up with some nugget.
Ruth, after everything that you have to do and everything that you manage to find time to do for yourself (I think I'll never understand how you do it AND sleep a bit too), would you like my invitation to join the Government and be the new Minister of Health? I am certain that on the back of your real frontline experience, you could at least reorient it towards some urgently needed priorities in terms of healthcare. You'll only need, say, half an hour a day, you can have all the perks you want & need and all you have to do is issue orders, make threats if necessary and take quick, straight decisions, delivered in plain language that they can all understand. If only....
SXXXXXXXXXXXXXX
I think your idea of food...little and often ..is a good one. Sometimes a degree in medicine is a poor substitute for common sense.
When my mother was ill in hospital several years ago, she was in a near coma..curled up like a new born..the genius that saw her said..She's depressed, how do you feel about electric shock treatment..?
This was barely 10 years ago..it makes you wonder.
Ruth, I'm so sorry you have gotten so little help and support from your doctor and other medical professionals. I know how hard it is to have someone you love going through this and not being able to find out how to help. When my father was in the nursing home with Alzheimer's, he too had choking and swallowing problems. It is very scary and frustrating because you want them to eat but are afraid if you push too hard and they choke, it could harm them.
I'm a huge fan of "House" as well, and I can imagine him coming to your house, investigating all over, and discovering some miraculous cure for Mick that no one but House would have thought of.
Amiga mia, remember that I'm here, with you no matter what. Maybe in silence, but here as always.
A big hug and lots of love
Ani
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