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Type 1: In need of some advice/support

C

Chamberlain

Member
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14
Hi there, I'm new to this pageboy but was wondering if I could get a response.

Beginning of November my mum was rushed into ICU in a diabetic coma and was only given 7 hours to live. (Was told of she was found just 30 minutes later she wouldn't have survived) 6 days later she came out of the coma and was in hospital for a further 4 days. She came home for 2 weeks before being taken back into hospital with her diabeties again. She was in for a further two weeks. She is a type one and is insulin dependent.

The reason for this post is due to her losing so much of her strength and fitness i have been a current carer for her. I'm due to go back to university in a few days and I don't want to have to leave her. Has any one got any advice or know what I could do to help reduce the fear of leaving her by herself?
 
Hello @Chamberlain. I'm so sorry to hear about your recent experience, and I do hope that your Mum is feeling better now.

Well done to you firstly for doing such a great job with supporting your Mum through such a tough time in her life. I hope you've taken some time to have a think about yourself and share how you're feeling with others? If you haven't, you should really confide in someone as with University, etc - you have a lot on your plate right now...

With regards to leaving your Mum by herself, do you have other family members who can check in on her and assist her where needed? Has she got contact numbers for her diabetes care team, specifically her diabetes nurse?

How is Mum getting on with things in general?
 
Hi @Chamberlain Sorry to hear your mum has had such a hard time and been so ill. I can understand why you're worried about leaving her. But I will say she's lucky to have such a caring son as you.

Do you know if her coma was caused by a hypo (very low blood sugar)? Or was it the opposite - very high blood sugar?

Did your mum and her team have any idea what caused her problems (eg a missed meal, missed injection, anything that could explain why she went into a coma)?

Has your mum been given follow up appointments to help get her control more stable?

Sorry for all the questions!
 
GrantGam1337 said:
Hello @Chamberlain. I'm so sorry to hear about your recent experience, and I do hope that your Mum is feeling better now.

Well done to you firstly for doing such a great job with supporting your Mum through such a tough time in her life. I hope you've taken some time to have a think about yourself and share how you're feeling with others? If you haven't, you should really confide in someone as with University, etc - you have a lot on your plate right now...

With regards to leaving your Mum by herself, do you have other family members who can check in on her and assist her where needed? Has she got contact numbers for her diabetes care team, specifically her diabetes nurse?

How is Mum getting on with things in general?
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Hi there, thing are doing a bit better but again she's started to become a little bit ill again but fingers crossed it's only a small bug.

The first time she was admitted to hospital everyone was around to care and help out and share emotions etc but since her coming out I've been very much by myself with the support of a few people around sometimes in the day.
There are other members but the second time she went into hospital I'd traveled over 4 hours to see my mum to find I had to call for an ambulance even though most of my family members had been around her for 2 days in a similar condition so I'm really not sure :(
She has got contact but they're so hard to get in touch with etc and even getting in contact with a doctor etc is so hard too. We're not a less popular area so it's hard.

Mums doing a bit better but still not right. It's going to take a bit of time I think.
 
azure said:
Hi @Chamberlain Sorry to hear your mum has had such a hard time and been so ill. I can understand why you're worried about leaving her. But I will say she's lucky to have such a caring son as you.

Do you know if her coma was caused by a hypo (very low blood sugar)? Or was it the opposite - very high blood sugar?

Did your mum and her team have any idea what caused her problems (eg a missed meal, missed injection, anything that could explain why she went into a coma)?

Has your mum been given follow up appointments to help get her control more stable?

Sorry for all the questions!
Click to expand...

*daughter but I know it's such a hard one :( yes, unfortunately her sugar levels were unreadable to the point even in the hospital they couldn't get a reading as they were too high. They still don't know what the cause of it is, they think it may have been an infection within her body but they then said it could have been sepsis and they also said DKA. They didn't come to a full conclusion though.
She had been ill for a few days I believe where she had missed a few insulin injections which had obviously sent her blood sugars high.
Her follow up appointments are this week but it's just so scary as I don't want to leave her on her own :(
 
Chamberlain said:
Hi there, thing are doing a bit better but again she's started to become a little bit ill again but fingers crossed it's only a small bug.

The first time she was admitted to hospital everyone was around to care and help out and share emotions etc but since her coming out I've been very much by myself with the support of a few people around sometimes in the day.
There are other members but the second time she went into hospital I'd traveled over 4 hours to see my mum to find I had to call for an ambulance even though most of my family members had been around her for 2 days in a similar condition so I'm really not sure :(
She has got contact but they're so hard to get in touch with etc and even getting in contact with a doctor etc is so hard too. We're not a less popular area so it's hard.

Mums doing a bit better but still not right. It's going to take a bit of time I think.
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This must be a lot for you to take on, I admire your efforts - you should be proud of yourself.

In instances like this, it's important to have a sit down with ALL family members and have a discussion about your Mum's health. You may find that some, many or all of them are not fully aware of her condition, associated warning signs or the impact it can have on her ability to function.

I'm not being intrusive, but exactly just how capable is your Mum? Would she benefit from some form of home care or the like? I don't know where you live so cannot advise on applicable authorities to contact. But depending on where you live, she may be eligible for some form of care from local councils etc. Whether that may cost or not, I do not know.

There are also various courses (again country specific) that can advise a diabetic on the best methods to control their blood sugar in times of illness, etc. We call the approach to being unwell with T1D "sick day rules" and some good advice can be found here. Click on flow chart for detailed advice:)

http://www.mydiabetesmyway.scot.nhs.uk/resources/leaflets/SickDayRulesForType1.asp
 
GrantGam1337 said:
This must be a lot for you to take on, I admire your efforts - you should be proud of yourself.

In instances like this, it's important to have a sit down with ALL family members and have a discussion about your Mum's health. You may find that some, many or all of them are not fully aware of her condition, associated warning signs or the impact it can have on her ability to function.

I'm not being intrusive, but exactly just how capable is your Mum? Would she benefit from some form of home care or the like? I don't know where you live so cannot advise on applicable authorities to contact. But depending on where you live, she may be eligible for some form of care from local councils etc. Whether that may cost or not, I do not know.
Click to expand...

We have tried to have a sit down with family and close friends but only some are able to help mainly due to work commitments and not living close.
We have looked into home care and when in hospital we asked whether or not there is a nurse around the area to come out and check up on her even if it was a couple of times a week but we were told no they don't and there's no one around to help :/
 
Chamberlain said:
We have tried to have a sit down with family and close friends but only some are able to help mainly due to work commitments and not living close.
We have looked into home care and when in hospital we asked whether or not there is a nurse around the area to come out and check up on her even if it was a couple of times a week but we were told no they don't and there's no one around to help :/
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Tough situation really...

What about a neighbour? Someone to check in once a day at least?

Is your Mum capable of taking care of herself generally? Is she fully independent?
 
GrantGam1337 said:
Tough situation really...

What about a neighbour? Someone to check in once a day at least?

Is your Mum capable of taking care of herself generally? Is she fully independent?
Click to expand...

Our neighbour is the one who originally found my mum in the diabetic coma and since she has been absolutely amazing! She is fantastic but we don't want to keep having to stop her from doing what she does with her family.

Mum is pretty capable now however she has postural hypotension as well which causes her to become dizzy if she is stood up too long or does too much. We're hoping after seeing a doctor this week things will look better!
 
Slightly off topic, but is your mum under the care of a specialist for for postural hypotension? I have a similar condition, just with tachycardia to go with it, and since being started on midodrine it has become much more manageable, particularly as I have found that any particularly bad dizzy spells can really spike my blood sugars as well.
 
EllsKBells said:
Slightly off topic, but is your mum under the care of a specialist for for postural hypotension? I have a similar condition, just with tachycardia to go with it, and since being started on midodrine it has become much more manageable, particularly as I have found that any particularly bad dizzy spells can really spike my blood sugars as well.
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Not that I know of. They haven't really shorted her with anything she's just on medication until Wednesday then stops :/
 
This is such a difficult situation for you *sends hugs*. It's not much, but I might suggest getting some kind of medical alert bracelet. You can get ones through MedicAlert, I think they are called, or just a simple one indicating that she is an insulin dependent diabetic, just so people are a bit more aware of it if she is out and about. I definitely second the suggestion made above about having a chat with family members about the seriousness of her condition.

Also, I really think it is important for you to let your university know what is going on, so you can get some support as well. You are doing a fantastic job looking after your mum, but dealing with that and university, particularly around exam time, puts you under a lot of strain, so you need to make sure that you are looking after yourself as well! The university will be able to make special allowances for you with regard to exams, or possibly refer you to a counselling service if you think that would help you.

Hopefully after your mum has seen the doctors again you will have a few more answers. By the sounds of it you won't be able to go to those appointments with her, do you think she is likely to pass on what is said to you?

In the mean time, if you do just need to rant about how unfair life is, do feel free to drop me a message. Best wishes :)
 
EllsKBells said:
This is such a difficult situation for you *sends hugs*. It's not much, but I might suggest getting some kind of medical alert bracelet. You can get ones through MedicAlert, I think they are called, or just a simple one indicating that she is an insulin dependent diabetic, just so people are a bit more aware of it if she is out and about. I definitely second the suggestion made above about having a chat with family members about the seriousness of her condition.

Also, I really think it is important for you to let your university know what is going on, so you can get some support as well. You are doing a fantastic job looking after your mum, but dealing with that and university, particularly around exam time, puts you under a lot of strain, so you need to make sure that you are looking after yourself as well! The university will be able to make special allowances for you with regard to exams, or possibly refer you to a counselling service if you think that would help you.

Hopefully after your mum has seen the doctors again you will have a few more answers. By the sounds of it you won't be able to go to those appointments with her, do you think she is likely to pass on what is said to you?

In the mean time, if you do just need to rant about how unfair life is, do feel free to drop me a message. Best wishes :)
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Hi there, thank you for the reply. I have been very tempted to get her a band to say about it but never known where to get one from but I'll be having a look online.
University are aware of what is happening at home however they have changed their circumstances section for exams so if you put in the circumstances you have to sit the exams later on in the year being August time which I don't think is best for anyone. They have offered a few things with not sitting the exams but I would rather get them over and done with now and spend the whole of the summer back at home. I have exams starting next week and I'm off back the end of the week so hopefully I'll be able to make the appointments with her to give more of a reassurance.
 
Ok...

Somehow, somebody should get hold of the Carers Trust in your area. They will come out and assess how and what help your mum can get... and advise on things (if appropriate) as benefits. The carers trust is nothing to do with social services.

Not only that though, your Mum should have been assessed before discharge from hospital. They shoukd have assessed the care your mum needs.

Do you feel tgat you should delay going back to Uni?

Would your neigbour/mum be able to contact carers trust and ask for help and be assessed.

I am perplexed that your mum has been discharged with little support. I am guessing this is because effectively they see that there was someone (you to care for her).

I think the GP should also be made aware and if your mum isn't well enough to go to Practice, she should be asking for a home visit on Tuesday. The GP MUST be made aware that she now has no support when you go back to Uni tge day after.
Your GP should also have advice on who to contact.

The other thing, depending upon your Mums abilities she may be entitled to DLA/PIP but carers trust will be able to advise.


There is also the neck thing that goes round neck and calls help in emergencies immediately. I just can't think the name of this neck thing that people wear...
 
If your mum needs help to get to hospital the hospital can arrange pick ups. Ther are volunteers in most hospitals that do this or the hospital can arrange a pick up via their own transport BUT it may mean arriving 2 hours early and waiting 2 hours after an appointment if relying on their transport.
 
There are basics that also need to be done for these circumstances.

The most imoortant is that your mum always has an up todate list of medicines and contact names and number and a key with your neighbour...and a list in the house, we have ours pinned up in the kitchen.
Does your neigbour know the difference between a hypo and hyper? Or how to check blood?

The most important thing is that your Mum knows to inform people when bloods are high, and she must have a thermometer to also take her temperature and do this if her levels remain consistently high. Of course, she should also be able to handle sickness better than going hyper, so the cause and her actions should be scrutinised so that it does mot happen again.
 
donnellysdogs said:
Ok...



There is also the neck thing that goes round neck and calls help in emergencies immediately. I just can't think the name of this neck thing that people wear...
Click to expand...
I think the emergency button is a medi-alert, my mum in law had one. But it has to be linked to a support organisation and in our case it was social work who were already providing a couple of hours daily care.

I can't really add to anything that has already been suggested, but I do have the greatest repect for you @Chamberlain, you've got a lot on your plate and are doing about as well as anyone could under the circumstances.

I'm also very impressed at how DCUK provides a forum for support that would otherwise be very difficult to find!
 
Thank you all for your comments I didn't realise I'd get such a response. The reason I'm so worried is because she comes out of hospital then a couple of days later she tends to have similar symptoms and then has to go back in again. I'm just so worried about losing her because I'm only a young adult (20) and she's not that old herself. She has quite a bit of support and the hospital near me is very full so they're constantly needing to get rid of patients to take in new ones (the reason she was let out the first time too early). I'm just scared of what could happen.
I would love to be able to delay going back to uni but there's parts of me that needs to go back to get out of the stress of being at home.
Neighbours have got a key to get in and are able to do blood sugars.
I'm just unsure what to do with thins as we haven't been given much support at all just been told she is fit enough to be at home.
 
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