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Carer..... for 43 years!

P

patc47

Newbie
Messages
3
Type of diabetes
Family member
Treatment type
Insulin
There's loads of posts out there, posted by existing or newly diagnosed Type 1's - all very upbeat and hopeful. But not so many from the "carers" of those same Type 1s Are we the forgotten few? And do those newly diagnosed Type1s (and their carers) know what the future holds? I don't think so. But the future is actually bleak - let's not pretend. 43 years ago I thought, "never mind I love this guy and there will be a cure soon" . Hasn't happened, and it's not in prospect.

Over time, through lack of awareness (which is inevitable), hypoglycaemia becomes a regular occurrence (sorry folks, but its true}. It is not fun for the sufferer, but a hell of a lot less fun for the carer who has to deal with it- because the sufferer cannot. Yes that same loved one/ carer is subjected to aggression and public embarrassment.
But we don’t see it discussed. After 43 years, I’m getting to the end of MY rope. Does anyone out there understand?
A real wake-up call from us Carers is overdue. (Don't think I ever saw myself as a "carer", but that's what I am!)
 
Hi @patc47 welcome! I can't say I have much to add to your thread because my own circumstances have been very different to yours, but just wanted to say hello and that there are people here on the forum who are carers. I became ill 15 years ago with pancreatic necrosis, was told I had a couple of weeks to live and all they could offer was palliative care. Obviously that didnt happen but I was a single mum and my 11 year old son became my carer from that day onwards so I am clued up on the guilt and shame of being dependant on someone who you truely love and the effect it has on their lives. At 18 I had to force him to leave for uni, and then the guilt on both sides was overwhelming but lucky only strengthen our bond. The insulin was last to go so I didn't become diabetic til last year at the age of 55. I now live alone and although emotionally close, my family all live abroad so I have to maintain my own health. So yes I am optimistic, but I'm also realistic. Daily life is bloody hard but I refuse to allow my body to rule my life. I think over the years I've learnt to forgive myself for having to impose me on my child and I've learn that I need to be kind to myself. Looking forward to chatting, Sue xxxx
 
Can I ask something very personal.. Had you known what your future held, would you have had children?
 
Hi Pat and welcome to the forum.
Lack of awareness is not inevitable nor is hypoglycaemia a regular occurrence, it happens to some people but not all. The majority of type1's sail through life without a problem. ( I'm speaking from a type 1 prospective with 50 years under my belt)
 
patc47 said:
Can I ask something very personal.. Had you known what your future held, would you have had children?
Click to expand...

If you feel thats relevant then yes I'll be honest. Way before I got ill l actually had two children, but my youngest son died as a baby. The strain of that led to the break up of my relationship and that's why I became a single mum. Would I have had children if I'd known the future? Yes. My oldest son is a wonderful man with a maturity and compassion that has come from having to deal with illness, loss and grief all his childhood but was surrounded by love and support. My youngest son only knew love in his very short life. No it's not ideal but I suppose we all have to do the best with the hand we are dealt with
 
Definitely disagree with hypo details in OP posting.
There is no reason why hypo's or awareness should be inevitable or increasingly getting worse etc.

I have always said a severe hypo needing 3rd party assistance is more scarey for the person assisting than the person having the hypo.

My hubby after 30+ years of me being T1 would be absolutely mad if I called him my Carer..... Yes it maybe in another 10years that he is... But please, I don't think this is inevitable..
 
@patc47 I have only a year to your 43 but I know exactly what you are saying and you and your circumstances are the reason I joined this forum. I am T1 carer too currently sat in A&E with my partner who is acidotic
 
Lauraj38 said:
@patc47 I have only a year to your 43 but I know exactly what you are saying and you and your circumstances are the reason I joined this forum. I am T1 carer too currently sat in A&E with my partner who is acidotic
Click to expand...

Perhaps its down to the strength and personalitys of the T1's to manage the diabetes and their lives. Or the basic instructions given when they were diagnosed.

Perhaps this could be useful to the T1 people that aren't caring for themselves properly. There are obviously people that will not change their thoughts or lives etc in all aspects of life and rely upon others to care for them when they get complications.

To some T1's though we have fought like anything to remain independent from care from others. Eg. Years ago I moved to Wales. The first week there I had a bad hypo. It was embaressing that I denied knowing anybody there, denied that I had family or friends (because even when hypo I did not want hubby to be bothered). It ended up that the estate agent was notified who then phoned my solicitor in the East Midlands who then tried a very long route to get hold of my hubby at work...to me I have fought very hard to keep my Independence at times. There is no way that I want my hubby labelled as a 'Carer".

I think there must be something about our initial acceptance and changes towards diabetes in our personalitys that make some of us more likely to accept someone dealing with hypos or hypers. Or something about the instructions we are given by Nurses and the Care Teams.

This is solely why I say that hypo's or hypers etc are not inevitable. I think its more based upon the personalitys of the T1 rather than direct diabetes related.
 
I understand the word carer to mean someone who provides care to someone who cannot do for themselves. For example, the person has physical disabilities and the carer helps to shower them, prepares food for them, maybe even feeds them if necessary. Or the person has had a severe brain injury and a carer is needed to help them make decisions or manage themselves safely.

In normal circumstances I don't think there is anything about T1 that means an adult needs a carer, unless we are talking about some hypo situations, in which case what they need is a first aider - someone to see the signs and give glucose and call an ambulance. If I see someone pass out in public I will look for a medic alert bracelet or necklace as one of the first things I do. That is just common sense and what first aid courses teach.

If I had T1 I would be mortified if my partner considered themselves my carer. Unless I had a major disability as well.
 
My 2 youngest daughters both take turns as my "Carer". I have no issue with using that terminology.
They have done so since they were quite young, and their experience with hypos, testing, insulin, my other meds, eye drop regimes etc is topnotch. I am very grateful to them.
In over 20 years of marriage, I don't think my ex had a clue about anything to do with my health, that is one of the reasons he is my ex!!!
I must agree with CatLadyNZ if it wasn't for my blindness, and some of the pesky complications I have, I wouldn't need a Carer to oversee uncomplicated Type 1.
My view is it is most often family members who "care", and isn't that a two way street, they may scrape me off the floor and wipe the drool from my face, all the while doing blood sugars, deftly squirting ghastly vanilla gel in my mouth, while I do my bit, listening to their issues, folding laundry, showing that I care and love them, as they show me by their actions.
Sorry to the OP, sounds like you are having a bit of a burnout in your role, right now. It would be great if you could take a break now and then. Only you will know the best stable times to slip off and for how long. And I am not talking treatments at a fancy spa, sometime a simple coffee with a friend does a world of good, and have a huge slice of cake with it
 
I'm lucky in that I don't have or need a carer for my type 1. I was diagnosed at the age of 20 when I lived away from home. I have been the only one looking after my diabetes but again I am lucky that I have seriously stumbled through 24 years of type 1 without complications. The last 2 though lchf which has made a HUGE difference in stability.
I still do not have a carer but I do have a partner. I am still responsible for my type 1 as I don't think he should share the care (unless I was actually ill. Then I would want tea and sympathy, soup and stuff as I would do the same for him).
It scares me that I may need a carer in the future so I test, test and test. I use what I find out to correct or not as needed.
I now know that a 'normal' diet seriously makes my type 1 difficult to control so I avoid it like the plague. This means hypos are few and self treatable without needing help from anyone. My partner often works away so I am often on my own. Embarrassment? I don't need to be hypoing to be an embarrassment - I can do that myself big time - I'm also shameless.
My plan is to die of a non-diabetes related cause. I feel for diabetics who where diagnosed when technology and good advice was not available. In some cases it is tragic. To end up needing a carer when being diagnosed 15-20-25 years later may have led to a different outcome is awful.
 

I was in a situation like this.. But a "carer" with a drug addict. The nights & days spent "nursing" while she either OD'd or went cold turkey. The "public embarrassment" with social engagements pulling her out of the brawls she started. (Mainly due to her inherent paranoia.) Having to walk away from her aggression towards me & feeling the heat on my back from the hurtful & abusive tirades... I was head butted, kicked & even sustained a busted rib.
By nature, even when low I'm a pacifist.

I lost any respect for her. She had none for her self.

I would wager @patc47 you are at the same point..

My diabetes on the other hand, these days has never been better!
 
Same age as you and independence as well when I was diagnosed @mrsvimes. Perhaps its knowing that we had nobody as back up that has kept us going without reliance upon others. Like you I've seiously had to accept different foods (not low carb because I've been like that since childhood) but now with slow colonic it narrows choices of food. So accepting change for health and independence is vital. Sure, I'm lucky with my partner who does his best and always has for me but he has never had to take time off work or care for me because of a hypo. Its never occurred to me that he would have to.

I fewl for people that have to have carers for ill health as it so often does come down to families.

However we have no family, no children so no fall back even as OAPs we will have to rely upon ourselves which is quite scarey...
 
Yep, no kids and no family that could look after us. But like you I don't think they should have to if we did. Obviously, dementia and things like that would lead to needing care. I've told him to put me in a home and get on with life if that's the case. Scarey....Definitely.
 

Hi @patc47

I wonder if you could give us a few more details in relation to your partner and the complications they are experiencing which are making you feel this way. Are we talking hypos? Other diabetes related complications? Maybe we are better placed to offer you and your partner advice on how they can overcome any complications and get their diabetes under better control so that it is less of a burden on you.
The people here are here because they want to learn how to control their diabetes so that they can avoid being a burden on others further down the line. We all have a different way of dealing with our diabetes and quite often for the most of us I think we all prefer to be in control and not to need to rely on others. I know this doesn't go for every diabetic...there are other partners of diabetics on this site in a similar position to you who are also at their wits end because their partners refuse to take charge, hopefully some of them will see your post and be able to offer advice from a different perspective.
 
@patc47, all carers who care for a loved one are unsung hero's and don't get the recognition they deserve IMHO, there are support groups and services out there that provide help and if you do a Google search you should find them.

As with regards to the future being bleak, your right that there's no cure at the moment but there's some exciting new developments at the moment in the management of diabetes, one is the Artificial Pancreas and another is the on-going Stem Cell Research that is taking place.

Best wishes.
 
Hi,
I am a Type 1 Diabetic and have been for 22 years now. At 21 I was subjected to Diabetic complications, muscle wastage in my legs which ment I couldn't walk for 2 years, oulcers on my legs down to the bone, kidney leakage, 5 1/2 stone, hair loss and nerve damage to my legs and stomach. The doctors said they couldn't do anything for me and was left to see if id live or die
.
Being on the patient side is very frustrating and scary, depending on someone to help and look after you takes away all the independence and dignity from the patient and makes them feel less of a person in society. No one wants a loved one to have to look after them because of a condition they had no choice of having or feeling like your a berden and putting strain on a relationship.

I was in recovery for 8 years and luckily I made a full recovery but I am left with Diabetic complications now which I just have to deal with.
For a job I am a carer covering many different illnesses and conditions. I decided to follow this career path as I know how it feels to be that patient and its a very different world, which you will never understand unless you have been there.

From reading your thread I can see a pattern that I have seen many of times from families who have a loved one to look after 24/7 and my advice to you is to seek help to come in and do some of the caring for you. You need to take a break for yourself and remember you are you and not just a carer. This will release yourself from the stress and strain and build that relationship back and having that feeling that you are free to also be you.

I hope this helps you see a brighter side
 
BinkiRose - that is an outstanding reply. If I could like it a 1000 times I would.
 
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