Family and diabetes

HpprKM

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Self absorbed and rude people! Motorists who are oblivious to the rest of the world, and really don't give a ****!
I am just wondering how to get family to take Type 2 db more seriously.

Not wishing to sound sorry for myself, but .... in a second marriage with adult extended family and small grandchildren. Husband early 60s advancing Parkinsons. We suffer the normal trials of family life, but this year been especially trying this year - in fact I can hardly believe what I've managed to get through. But hey that's life! But amongst all these problems, nobody, but nobody seems to understand diabetes. I have what I call my diabetes days but only hubbie and daughter know about this and all I get from hubbie is that he's not well, daughter has thyroid disease and if I say anything she brings up her illness. One of hubbies daughters is under the illusion that Parkinson's is not a bad illness so pretty sure she, as do many, thinks db is not much more than not being able to eat sugar. Hubbie got quite vociferous, unusually other day heaping uncalled for abuse on me - seems a Parkinsons thing. What my question is, how do I make everyone understand how diabetes can make a person feel even though they look ok and what it really is?
 
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forge

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512
Type of diabetes
Type 2
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Tablets (oral)
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Getting old and everything that goes with it. All the repeats on TV. The drongos who ring me up to sell me things. Religious havens for pedophiles and war-mongers.
I am just wondering how to get family to take Type 2 db more seriously.

Not wishing to sound sorry for myself, but .... in a second marriage with adult extended family and small grandchildren. Husband early 60s advancing Parkinsons. We suffer the normal trials of family life, but this year been especially trying this year - in fact I can hardly believe what I've managed to get through. But hey that's life! But amongst all these problems, nobody, but nobody seems to understand diabetes. I have what I call my diabetes days but only hubbie and daughter know about this and all I get from hubbie is that he's not well, daughter has thyroid disease and if I say anything she brings up her illness. One of hubbies daughters is under the illusion that Parkinson's is not a bad illness so pretty sure she, as do many, thinks db is not much more than not being able to eat sugar. Hubbie got quite vociferous, unusually other day heaping uncalled for abuse on me - seems a Parkinsons thing. What my question is, how do I make everyone understand how diabetes can make a person feel even though they look ok and what it really is?

@HpprKM hello you are doing it tough.

My lot don;t seem to understand diabetes especially when I traveled overseas to meet family, they all had priorities mostly skipping meals and when or if we would eat.

I think you should play the carer card.

"I have to look after my self or I will be too sick to look after you."

There was a poster in here who is dying from diabetes, if you can print it out and stick it on the fridge it might help.
 
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HpprKM

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Self absorbed and rude people! Motorists who are oblivious to the rest of the world, and really don't give a ****!
Yes, it's irksome - I guess it's a hidden illness thing! Will look for card - thanks. I kmow about the meal skipping, or 'oh, we'll get pizza' - then when you protest that's top of no no list they all look very confused or make comments next time it comes up, oh but you don't like pizza. Yes I do - just can't have. Or ask if I want biscuit bring them out then say 'oh you can't have them can you' - carbs are another issue all together! Worse thing is I am a slim type 2 - genetic- and people say 'well you shouldn't have diabetes' - my husband, who has a medical background, kept saying perhaps I wasn't diabetic. Still not sure he's convinced!

Any idea where that poster might be?
 
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phoenix

Expert
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5,671
Type of diabetes
Type 1
Treatment type
Pump
Absolutely agree about playing the carer card though I really don't know how to do demonstrate the problems to the rest of the family (but see the link below for official help)
To a small extent I know where you are coming from but because I live here and not in the UK I haven't had to do it all the time. (just the frequent emergencies)
When I do, I find it very hard to keep blood glucose stable I actually often have lots of hypos and they aren't recognised by my father who talks at me when I'm not able to communicate well with anyone .

Please, don't ignore your own needs and when and if necessary look for some respite care. Think also about the future, sorry to bring it up but it is important. Think about adaptations to make both of your lives easier. I was in the situation where my father was the 'official' carer but like your husband's daughter was in denial about the problems that Parkinson's can bring. He kept delaying doing these things which would have made life easier until the situation became an emergency ( so for example I was trying to lift my mother on and off the loo, several times a day, in a tiny downstairs cubbyhole. It often almost had both of us on the floor ).

I don't know if you have seen this leaflet on carers from Parkinson's UK. It describes your rights as a carer including to an assessment of your needs.
http://www.parkinsons.org.uk/sites/default/files/publications/download/english/b071_carersguide.pdf
Your assessment is your chance to really explain how caring affects you, and what help you need to do it. It is important to have your own
time and to be able to speak freely. If you want to, you are entitled to ask for your assessment to take place at a separate time (and place) than that of the person you support.
 
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HpprKM

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Self absorbed and rude people! Motorists who are oblivious to the rest of the world, and really don't give a ****!

HpprKM

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Self absorbed and rude people! Motorists who are oblivious to the rest of the world, and really don't give a ****!
Oh gosh that's 66 pages, do you happen to kmow where poster might be?
 
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majorwaite

Newbie
Messages
2
Type of diabetes
Type 2
Treatment type
Tablets (oral)
Sorry to hear your difficulties - one selfish question - why is pizza a no no? I have one every week but realise I need to amend my eating patterns - not got the hang of this thing yet!
 

HpprKM

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Self absorbed and rude people! Motorists who are oblivious to the rest of the world, and really don't give a ****!
Surely it's full of carbs and cholesterol?
 

mo53

Expert
Messages
7,869
Type of diabetes
Type 2
Treatment type
Tablets (oral)
Forge has offered some good advice there. People being cared for often forget the needs of their carers until it is clearly pointed out to them. You take care and make sure they dont get you too far down.
 
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sally and james

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Messages
1,093
Type of diabetes
Family member
Treatment type
Diet only
@majorwaite wrote, "why is pizza a no no?"
Pizza base is a bread, it's made from flour. You probably knew that! Diabetics who want to control their sugar levels avoid carbohydrates as these turn into sugar in the body. This involves avoiding bread, all flour products (e.g. pastry, biscuits, cakes), pasta, rice, cereals and potatoes, as well as the obvious sugary things, including most fruit, fruit juices and honey.
As well as the bread base, toppings may have added sugar.
If you do eat a pizza, your blood sugar may not rise immediately because the fats in the topping will slow down the relevant processes, but don't be fooled, the sugars are all their.
Sally
 

HpprKM

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Self absorbed and rude people! Motorists who are oblivious to the rest of the world, and really don't give a ****!
Beware what you are told by dbn they seem to be fixated with pumping us carbs which convert tl sugar - aa sally and james say, toppings like many shop bought sauces often pumped full with sugar as are many 'healthy' foods inc juices, yoghurt, health snacks and bars - personally think they are not compliant with trade description act - nothing full of sugar is healthy. Always check contents lists.
 

HpprKM

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Self absorbed and rude people! Motorists who are oblivious to the rest of the world, and really don't give a ****!
Thanks Phoenix - good advice - also had to deal with a bipolar son situation this year carer resources are almost out of fuel. Hubby not bad enough to get help but his family agreed to discuss future care and worries, he cannot or will not face it. Persuaded him to contact dvla at last. It's so hard because I can inly imagine how he really feels. Good to hear from someone with experience in PS. His family even , now, suggested we go to local meeting for family and carers. But I get depressed as future looking bleak. We try to make best of our free time. Very hard to live with and watch partner changing as still comparatively young.
 

Ruth B

Well-Known Member
Messages
447
Type of diabetes
Type 2
Treatment type
Tablets (oral)
Sorry to hear you are having so much problem with your family, I am lucky, mine are more intrigued about how I deal with the condition and while I don't see my parent often we phone regularly and I often get quizzed on how its doing, what I can and can't eat ad my readings.

One suggestion is to bring the testing out into the open. I don't know if you have a meter and self test, but if someone suggests pizza etc. instead of just saying no, maybe reaching for you meter and talking a reading in front of them and then telling them that it is already too high, or having a piece of pizza and then doing the reading after the two hours so they actually hear how it has effected you, might help them understand better.

My father also suffers from Parkinsons and I have seen it slowly progress over the years and it's scary to watch. His main symptom is shaking, but I know others can go almost ridged and have problems moving muscles or it can effect the ability to speak. It also is associated with memory loss and mood swings. A year or so ago I was concerned enough to mention to my Mother that my Fathers did seem to be suffering from advancing dementia in case it had worsened slowly and they hadn't realised how bad it had got, they had, but unfortunately it is also part of the Parkinsons and there is only a limited amount they can do to slow it down.

I know you say that your family all think that diabetes isn't a major problem, and that their illnesses are worse, but I think you need to keep on about how bad diabetes can be if not controlled, I don't know about you, but I would much rather lose out on the carbs and sugars than lose a foot, a hand or my eyesight.
 
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HpprKM

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Thanks for support - good to hear someone else knows about Parkinsons, I did do a post about it once but not much response. Hubbies daughters need to understand what we are up against. One of them told my daughter it's not a really bad illness, my daughter told her it is, she replied 'no it's not'. We are supposed to have a meeting, his daughters and I but getting it arranged difficult they never available. Plus they want their dad to be part of it. I fully understand that, but how can we discuss things like his memory, some slight confusion and how I talk and rarely answers, falls asleep in the chair all day, but prowls around all night plus more things, in front of him!

Sorry, this diabetes forum not Parkinson's but I am diabetic and I get tired, have bad days and it is all about 'dad's not well' - I know that I live with him! I have applied for counselling for someone to talk to about it.
 

Ruth B

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Messages
447
Type of diabetes
Type 2
Treatment type
Tablets (oral)
Parkinsons is a horrible degenerative disease, and unlike diabetes there is very little that a person can do to control it themselves. As far as I am aware they still don't know why some people have it and others don't and whether there is a genetic connection (something his daughters might need to be made aware of), the hereditery possibility scares the daylights out of me but there is no test that I know of.

You might want to join the Parkinsons UK website. My parents have found it really useful for information and there is a forum there, hopefully the people there would be as supportive and as informative as the ones here are on diabetes.

The other one to mention, I would assume that your husband is seeing a specialist nurse if not try and get a referral. Unlike some of the Diabetic nurses i read about, the specialist my Father sees has help a great deal and has balanced his medication to help control the symptoms but not to send him to sleep too much. Some of the medication can cause drowsyness and irregular sleep patterns.

I'm no expert, try the website, (google Parkinsons UK and it should come up) and hopefully they can help their with that problem.
 

Anie

Well-Known Member
Messages
306
Type of diabetes
Type 2
Treatment type
Tablets (oral)
In the early days of your partner suffering from Parkinson's, was the condition 'played down' to his daughters? If so, this could be the reason why the don't think it is a 'bad' illness. I do understand, my mothers death certificate states cause of death as Parkinson's disease, and my dr said what a horrible thing to die of, when reassuring me that it wasn't a hereditary condition.
 

HpprKM

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Self absorbed and rude people! Motorists who are oblivious to the rest of the world, and really don't give a ****!
Yes; I guess it was played down they said they looked it up though. I had to go A & E with eye some while ago - chatting to Doctor about db, told him abiut husband he said 'That's awful I would choose db over that any day'. My own GP who dx hubbie's mother has it, GP said she didn't recommend the PS forum as is bleak reading - it is! Causes uncertain, possibly vety slight hereditary cause. Prognosis dim. Hubbie just asked for umpteenth time today 'what's going on?' Doesn't mean it literally but keeps saying it. Also follows me around alot - very hard to deal with so claustrophobic.
 

HpprKM

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Self absorbed and rude people! Motorists who are oblivious to the rest of the world, and really don't give a ****!
Ruth B thanks I have been on website but cannot use forum as hubbie likely to recognise comments from.me. he does get paranoid at times has been known to check my email and browser history. Also telephone calls so can only contact them by smartphone under special email address. Yes it is a terrible disease and very hard in carer. I helped my mum and dad in old age. This is something different.