Caring for someone living with Dementia and Diabetes

[Munchkin22]

I care for someone who is living with Diabetes and Dementia.

I have been asked to make a video by our Dementia consultant and Diabetes UK, about the challenges of caring for someone who us living with both conditions. I have a few ideas of what to talk about, but was wondering if anyone else is in the same situation and would like to me to raise any concerns

 

[Feeling unsupported]

I had concerns for sometime, that mum was not administering her insulin regularly. I raised my concerns repeatedly with the health professionals. It was only when the paramedics took her to A&E because she was so unwell, that my concerns were taken seriously. The doctor refused to discharge her unless I agreed to a daily nurse visit, to administer the insulin. Halelujah! A nurse has visited daily ever since (approx 6 years). Only recently, after her move to care home has the insulin been discontinued, as she is no longer eating enough to require it.

 

[Grannie G]

My husband had type 2 diabetes and hid his medication when it became too difficult for him to swallow. It was either hidden in his pyjama pocket or thrown out of the toilet window, Metformin was the biggest problem. The tablets were quite big.

I was told poorly controlled diabetes can cause increased confusion. It was news to me.

 

[Munchkin22]

I had concerns for sometime, that mum was not administering her insulin regularly. I raised my concerns repeatedly with the health professionals. It was only when the paramedics took her to A&E because she was so unwell, that my concerns were taken seriously. The doctor refused to discharge her unless I agreed to a daily nurse visit, to administer the insulin. Halelujah! A nurse has visited daily ever since (approx 6 years). Only recently, after her move to care home has the insulin been discontinued, as she is no longer eating enough to require it.

Thank you, this is actually one of my concerns as due to not knowing how to administer insulin I visit my cared for twice daily to administer. If he was left with it, I fear he would either not take it, or he would overdose on it.

 

[Munchkin22]

My husband had type 2 diabetes and hid his medication when it became too difficult for him to swallow. It was either hidden in his pyjama pocket or thrown out of the toilet window, Metformin was the biggest problem. The tablets were quite big.

I was told poorly controlled diabetes can cause increased confusion. It was news to me.

Thank you, im going to add into my video about compliance with medication.

Have you been able to have his meds adjusted to liquid form or smaller tablets?

 

[Grannie G]

Have you been able to have his meds adjusted to liquid form or smaller tablets?

When my husband was in residential care some of his medication was changed to liquid but I`m not sure what. He died 8 years ago so the problem no longer applies to us.

 

[Feeling unsupported]

Thank you, this is actually one of my concerns as due to not knowing how to administer insulin I visit my cared for twice daily to administer. If he was left with it, I fear he would either not take it, or he would overdose on it.

It will be a battle, but I believe that although the NHS won't administer daily tablets etc, they do appear to have an obligation to oversee insulin injections.

 

[thistlejak]

We not only had the problem with not taking medication but also with an inappropriate diet. MIL ate only fruit (grapes, bananas and apples mainly - she could do a punnet of grapes, 2-3 bananas and 2-3 apples a day), biscuits , popcorn, crisps for months before she went into hospital. She was also dehydrated.
The GP's response was 'at least she is eating something! and the grapes will give her some fluid'
She didn't understand the need for medication or a good diet and no amount of persuasion worked.
I have to say now that she is in a Nursing Home she eats well and takes medication - maybe it is something to do with a nurse giving medication.
Cannot suggest anything to help anyone in the same situation only add to problems encountered.

 

[Munchkin22]

We not only had the problem with not taking medication but also with an inappropriate diet. MIL ate only fruit (grapes, bananas and apples mainly - she could do a punnet of grapes, 2-3 bananas and 2-3 apples a day), biscuits , popcorn, crisps for months before she went into hospital. She was also dehydrated.
The GP's response was 'at least she is eating something! and the grapes will give her some fluid'
She didn't understand the need for medication or a good diet and no amount of persuasion worked.
I have to say now that she is in a Nursing Home she eats well and takes medication - maybe it is something to do with a nurse giving medication.
Cannot suggest anything to help anyone in the same situation only add to problems encountered.

Thank you, poor diet was a problem for us to. Before I actually knew that the person I care for has Diabetes his food intake was awful. In a sense I'm grateful that he injured his leg at my wedding as it meant the truth came out. I had to do a complete overhaul of his diet and now my mum who is also a diabetic (but doesn't have Dementia), batch cooks meals that he can reheat. These are all carb counted and portioned up. It's better now I know roughly what he is eating and it's also helped get his blood sugars to a manageable level

 

[HarrietJD]

I look after my mum who had Type 1 diabetes and Vascular dementia. Both together are exhausting and so challenging.
I have district nurses come and give insulin once a day as mum was forgetting to do it and we had 3 admissions with DKA.
Main issues I have now is that mum doesn’t remember when she has eaten and will sometimes eat twice or not at all. She has no idea on carbohydrate amounts (she is on 2 x long acting insulins so doesn’t carb count or correct with insulin) in a meal and regularly forgets to test her bloods sugars.
Having both diabetes and dementia is really challenging x

 

[Shedrech]

Hello @HarrietJD
A warm welcome to DTP
I wonder whether it's time for home care visits for your mum so her meals are supervised, and then maybe access to food is somehow restricted ... a worry for you

 

[HarrietJD]

Hello @HarrietJD
A warm welcome to DTP
I wonder whether it's time for home care visits for your mum so her meals are supervised, and then maybe access to food is somehow restricted ... a worry for you

Sadly I already restrict food (which I’ve really had a battle personally with as it’s another bit of independence I’m taking away) . I prepare her breakfast and label up her carbs for her lunch, however I also have to leave her access to some emergency carbs in case her sugars are low while I’m at work. She lives in an annexe and also comes and will take things out my cupboards as she doesn’t always see (despite them being openly on the side) the carbohydrate I leave for her. She’s also still got some independence and takes herself to the local shop so will buy high carb foods (lasagne, cottage pie bananas etc). I feel so awful having to take it and then ration it…. I do it on the quiet now as it upsets her. :-(

 

[Munchkin22]

I look after my mum who had Type 1 diabetes and Vascular dementia. Both together are exhausting and so challenging.
I have district nurses come and give insulin once a day as mum was forgetting to do it and we had 3 admissions with DKA.
Main issues I have now is that mum doesn’t remember when she has eaten and will sometimes eat twice or not at all. She has no idea on carbohydrate amounts (she is on 2 x long acting insulins so doesn’t carb count or correct with insulin) in a meal and regularly forgets to test her bloods sugars.
Having both diabetes and dementia is really challenging x

Thank you for your reply. I know what you mean about restricting food. My mum prepares meals for my friend to heat up which are carb counted although I don't need to adjust his insulin for these as he's on a mix of long and short acting. Our friend still lives in his flat and I take h shopping on Fridays to buy the few additions. He knows I won't let him buy certain things and thankfully, he hasn't shown signs of getting them when I'm not around yet

 

[Smilerswife]

I care for someone who is living with Diabetes and Dementia.

I have been asked to make a video by our Dementia consultant and Diabetes UK, about the challenges of caring for someone who us living with both conditions. I have a few ideas of what to talk about, but was wondering if anyone else is in the same situation and would like to me to raise any concerns

Hi, my OHhas type 2 diabetes and has been insulin dependent for many years. Prior to his dementia diagnosis he looked after his meds intake well. Now though, every morning is a battle to do the finger prick and give him his insulin. I have just asked for advice from the GP to see if I have to test him everyday or if a couple of times a week would sufficient. I'm waiting for a response. His readings are stable. It is so much nicer at breakfast time if we haven't had this battle.

 

[TanyaW]

I care for someone who is living with Diabetes and Dementia.

I have been asked to make a video by our Dementia consultant and Diabetes UK, about the challenges of caring for someone who us living with both conditions. I have a few ideas of what to talk about, but was wondering if anyone else is in the same situation and would like to me to raise any concerns

I care for my mother who has type 2 along with alzheimers and vascular dementia. Two years ago, aged 88 she was taken off all her medication except eye drops for glaucoma and her patches for dementia as her meds combined with the lack of food eaten was causing stomach upsets. She was having D&V probably 3-4 times a week and it was very distressing for us both, at one point she was scared to eat! We had to see a consultant geriatrician and she was the one to instigate the halting of meds, to improve mum's quality of life. I'm so grateful to her. Unfortunately the NHS rarely has the flexibility to look at things holistically. I would suggest carers who have not previously been involved in the management of the diabetes need the same information that is given to a newly diagnosed patient , thankfully I was aware of the 'balancing' that needed to be done with mum's food/tablets and an idea of how this could affect her but I was very relived when the consultant took that worry from me.
Good luck with the filming, remember you are doing a great job and sharing the ups and downs with others will make them feel less isolated I promise!

 

[Susiemoo]

We've been having a lot of worry with my mil who has diabetes and takes an assortment of medication every day, over the last few months her cognitive abilities have declined and she's forgotten to take one of her tablets then forgotten she's forgotten and become very confused as a result until we discovered what had happened. Then she ran out of something and forgot she'd ran out. It didn't help that she insisted on her prescription being sent to boots in her local town centre as they are the only chemist she trusts but she's becoming really unsteady on her feet which has put her off going out. Recently we've had to throw away all kinds of fresh food from her fridge as it's way past it's date and she's just bought more of the same but doesn't eat even a fraction of it, then we find empty crisp bags and chocolate wrappers scattered around. We bought some easy microwave ready meals but she didn't even try them and threw them away pronouncing them horrible. I really don't know what she exists on. We're now arranging for her meds to be delivered but the food thing is really worrying. If you try to guide her she gets all shouty and defensive.

 

[TanyaW]

Sadly I already restrict food (which I’ve really had a battle personally with as it’s another bit of independence I’m taking away) . I prepare her breakfast and label up her carbs for her lunch, however I also have to leave her access to some emergency carbs in case her sugars are low while I’m at work. She lives in an annexe and also comes and will take things out my cupboards as she doesn’t always see (despite them being openly on the side) the carbohydrate I leave for her. She’s also still got some independence and takes herself to the local shop so will buy high carb foods (lasagne, cottage pie bananas etc). I feel so awful having to take it and then ration it…. I do it on the quiet now as it upsets her. :-(

I'm so sorry for your situation, when my mum first came to live with us she could still walk with the aid of a frame and if I was in the garden or upstairs she would make her way into the kitchen and I would find her with her head in the cupboard, biscuit/cake in her mouth and another 1 or 2 in her hand, we started putting an apple on the counter ( as you go into the room) so she wouldn't go to the cupboard, it worked for a while but we ended up moving all the 'snack' food out into our laundry room, I felt awful about that so I can empathise but you have to remind yourself that it would be so bad for her health if you didn't. You're doing great job working out her food and thinking of everything.

 

[HarrietJD]

I'm so sorry for your situation, when my mum first came to live with us she could still walk with the aid of a frame and if I was in the garden or upstairs she would make her way into the kitchen and I would find her with her head in the cupboard, biscuit/cake in her mouth and another 1 or 2 in her hand, we started putting an apple on the counter ( as you go into the room) so she wouldn't go to the cupboard, it worked for a while but we ended up moving all the 'snack' food out into our laundry room, I felt awful about that so I can empathise but you have to remind yourself that it would be so bad for her health if you didn't. You're doing great job working out her food and thinking of everything.

Thank you for your reply… it’s so hard isn’t it… I know if I give her free range it would be a nightmare so getting that balance and not living with horrendous guilt is really hard x

 

[Munchkin22]

Thank you everyone for your comments and challenges. I have made the video today and emailed it off (I'm sure I sound awful as I've been captured by COVID), so contingency carer plan has kicked in