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My sister

D

DunePlodder

Well-Known Member
Messages
861
Location
N Somerset
Type of diabetes
Type 1
Treatment type
Insulin
Hi,
Found these forums recently & I'm impressed by how normal everyone seems. Other places appear to be populated with people who have perfect control of their diabetes.

I've been type 1 for the last 15+ years but this post is about my older sister who has been type 1 for nearly 30 years.

She had a stroke in 2005 & went into hospital where the the diabetes aspect was a disaster - after 2 weeks under their care she ended up in intensive care. Family had been arguing with staff for days about her readings - often 20+, but staff were not concerned.

For the last 3 years she has been unable to look after herself & does not recognise any hypo symptoms. Consequently my brother-in-law has been reponsible for her care 24 hours a day.
Obviously this is tremendously difficult & he has done his best. However he has been reluctant to accept much help, or consider new ideas. Also he doesn't really cook, which is a big problem. Anyway, in recent months the stress has taken it's toll on him & on Saturday he was taken into hospital. Social services left carers with my sister, & a district nurse to come twice a day to do her injections. (twice a day?! - I have at least 4 a day).

If you are still reading thank you for your patience!

My sister lives in Derbyshire & when her daughter, Rachel, telephoned from Norwich during Saturday afternoon they said her blood glucose was 22. My niece tried to persuade the district nurse to give her a corrective dose but they couldn't take instruction from the family over the phone & were following what the GP had said. Rachel felt she had no choice but to get in the car & drive up there (she'd already visited the previous day).

My niece has been there ever since, battling with my sister's blood sugars. They tend to be erratic to say the least. Over the years we have discussed them frequently but the extent of swings both up & down seem mystifying. Mine are much better behaved thank goodness.

I have been puzzling over yesterday's figures. Note that my sister is in a wheelchair & get's very little exercise. She weighs about 7.5 to 8 stone & has never been much different. She is 63.The stroke means she has problems swallowing, so eats slowly. Also I am 180 miles away & trying to help over the phone.

Wednesday
Lunchtime 9.1 - small jacket potato with cheese. 3 units Novorapid
15:00 9.4
18:15 9.3 - 3 units Novorapid
18:45 Mashed potatoes some parsnip/carrot stew . 11 units Lantus
21:00 16.4
21:30 15
22:45 10.9
23:45 8.1 - 0.5 weetabix & milk
03:00 7.1
04:00 5.4 - some shredded wheat
07:30 6.9

The day time ones are not great but fairly steady & a big improvement over a few days ago. We are puzzling over where the 16.4 came from? The obvious answer appears to be more Novorapid, but experience from a previous day has made Rachel very cautious. Also how the blood sugars seem to continue dropping through the night. Glargine problem? As you can see my wonderful niece is not getting much sleep & my poor sister must be full of holes from all these tests.

Any thoughts would be appreciated. Sorry about the long post.
Robert
 
I would seek out a solicitor who could write to the PCT about your sister's care and make it clear, she will go to court to get compemsation. In my experience, nothing less than threat of a lawsuit gets through to some people.
Hana
 
Hi and welcome to the forum Robert,
Sounds like you and your neice are doing all the caring, and what a terrible worry the situation must be for both of you.
Two things I noticed from your post that could explain the highs. Firstly the meal prior to the 16.4 rise, was very high in carbohydrates. Potato, carrots and parsnips together would cause a BG rise. Personally I'd only have one of either with a meal.
The other thing, and you made reference to suspecting it, is Lantus :twisted: Dreadful stuff for some people, including myself, and you don't need to look far on this forum to find others suffering not only erratic, inconsistent and unpredictable BGs on it, but pain,digestive troubles, exhaustion, etc;....
Here's some link about both that you might find useful
brianmac.co.uk/food.htm#P
viewtopic.php?f=26&t=2797
Keep us posted on how things go with your sister and her husband.
Jus :)
Edited post to put UK carb counting web-site on.
 
Janabelle, that link is to a US site. The US calculate their carbs differently to the UK.
A lot of the food quoted is not available in the UK as well.
Better to get a UK carb counting book so that packaging can be checked with the book.
 
Is your sister under the care of a diabetic specialist rather than a GP? I would ask for a diabetic specialist to be involved with your sister's care rather than a GP. The community nurse who has been appointed to help your sister should take advice from a diabetes care team (for her diabetes management) rather than a GP. I'm sure GP's vary but from experience our GP has limited knowledge of adjusting insulin doses. I'd agree that her Lantus dose is a problem, she should not be having to eat during the night to avoid hypos. May I also recommend that before you make adjustments to her insulin that you get a pattern of readings for a few days. I have always been advised to base my adjustments on a few day's worth of readings rather than one (possibly random) set of readings. Also, adjust one thing at a time so that you can see how that adjustment affects control before moving on the make further adjustments.

Good luck, I know how frustrating it can be trying to help someone with healthcare when you're so far away.
 
Thanks for that Sue, and apologies Robert. I noticed no-one had replied to the post and did it in rather a hurry, while attempting to teach my 14 yr old to cook an evening meal :D
Your prob right Sue, a book would be better, I used to have a great one called "Countdown" from diabetes UK, which had the traffic lights as well, foods on the green pages being very low in carbohydrate. I'll edit the post if I find something better online.
Jus
 
Wow! So many replies in such a short time, thank you all.
It is Rachel doing the caring, I'm simply trying to offer some constructive advice.
I wondered about the parsnips & carrots but couldn't find them on the BDEC web site which I find strange as I think it is generally an excellent site & online course.
(Bournemouth Diabetes & Endocrine centre. http://www.bdec-e-learning.com)

Rachel has organised a complete reassessment of my sister & the situation in general. With regard to the diabetic specialist I think a new one has started fairly recently, I wasn't impressed by what I heard of her predecessor.

As to taking legal action, well believe it or not she was in the same hospital about 2 years later for unconnected reasons, & the same thing happened, sky high readings - she ended up in Intensive Care! Both Rachel & I wanted to take action - there was a meeting with hospital management - but brother-in-law didn't want to go further.

I'm only now seeing these reports about Lantus, which I use as well. I shall investigate further.

Thank you again, hope the evening meal went well Jus.
Robert
 
Hi All,

An update to the situation with my sister.
My brother-in-law is now home from hospital & has resumed caring for her.
Rachel was responsible for 10 days (& nights) & though the readings improved she feels frustrated she didn't get the sugars "right". As I said people try for years & don't do that!

When she first got there she contacted my sister's GP & talked to the practice nurse who obviously didn't want anything to do with adjusting insulin dosages. Rachel then talked to the diabetic specialist's secretary who told her they could arrange a meeting in a couple of weeks time... I would have thought that the situation would have rung alarm bells throughout the system. So much for the "diabetic support team" we hear so much about! Rachel is currently working on a letter of complaint.

In other respects She did very well to sort out a re assessment by social services. Positive arrangements have been made to take the strain off my brother-in-law.

Thank you for all your advice.

Robert
 
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