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@Sunnygirl1 No she is a Type 1 since she was about 16 years old. She is on two types of insulin. Her long lasting is toujeo solostar insulin https://www.toujeo.com/about-toujeo. Which is taken once a day. AT her next appoint on Thursday we are discussing taking her off this and moving her back to Levemir.
Her short acting is humalog sliding scale. They actually stopped giving it to her at bedtime in hopes that she would stop have the morning lows.
Hoping the the change in long acting will help this situation.
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Okay. The thing about maintaining the blood sugar with insulin is that it works over time. Are you positive that she is a Type I diabetic? I say this, because there are some Type II's who take insulin. You can get Type I or II at anytime in life. Operating on the assumption that she is Type I. In that case, she is likely taking 2 types of insulin. Slow acting, like Levemir or Lantus. This works from 12-24 hours and is called a basal dose. It keeps the sugar down overall. Then, there is likely her fast acting insulin like Novalog. It is taken before meals to bolus or cover the carbs she eats. So, in order to meet the balance, the blood sugar MUST be taken in the A.M., before meals, at snacks and bedtime. I'd question what kind of dose they are giving her at bedtime, as it may be too large or at the wrong time.

A good endocrinologist would figure this out pretty quickly. I'd try to find one pronto. But, keep in mind that the person who is providing injections has to know how to carb count and the food that is expected to eat, must be eaten or you could go too low.  She likely needs to have the insulin formula recalculated to prevent these lows.   Normally, like with young children, I have read that the key is for the patient to eat the same thing every day at the same time. It's no fun, but, it lends itself to keeping the numbers within a good range.

If there is any chance that your mom is actually a Type II. I'd explore if pills only would work. A good endo would be able to make this determination.
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Perhaps there's a community college with a nursing program where you can solicit for a little help for someone to be with mom during the evening meal - my mom doesn't warm up to new folks either and I have caregivers with her 12 hours a day - bringing a new one into the rotation takes some time
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@Sunnygirl1 Mom can feed herself, just needs the encouragement to do it or the food she likes. Over the past month the aides seem to have gotten better trying other food options when she is not eating during the day. I think she would be angry if anyone actually tried to feed her. It is the night time that is the issue that refusing to eat just because she does not want to, which does happen with dementia.

Her lows have been in the 40s and 50s and it is not a wait and see attitude. During the day she is closer to 200. I speak daily with her Primary Care Dr. and the nursing director at the ALF. Everyone is trying to figure out why she awakes up so low. Let me tell you she is very functional at those numbers, you don't realize she is low until you test her.

As I stated earlier she had been in a skilled nursing home and her behavior is horrible, refusing to bath, get out of bed and eat at all. Seriously the nurses don't have time for that, they just checked her every few hours and would give her insulin if she was high or a glucose shot if it was low. And yes she was in three different skilled nursing rehab places and they all did the same thing. So I can understand why my mom was depressed in them. So yes a NH would be able to constantly monitor her diabetes with out limitations but she would just give up and I would be lucky to have her around for Christmas. I want to have some peace and happiness in these last few years, not just to lay in bed and stare at a TV.
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I am a Type I diabetic. Taking care of insulin levels is a full time job. Since your mom is not able to do that for herself, it's vital that it be addressed. You are right to insist on her behalf.

When you say her blood sugar is low in the a.m., how low do you mean? Is it 70 or 40? Low blood sugars should be addressed by her doctor immediately. It's not a let's give it more time thing. It's urgent. So, I'm not sure why the insulin doses have not been reviewed by her doctor and addressed.

It might not be practical, but, there are Continuous Glucose Monitoring devices that alert when the blood sugar goes too high or too low, but, it requires time, energy and attention and it doesn't sound like the staff is up to it. Also, your mom's dementia might cause her to try to remove it.

What are your mom's A1C numbers? They should reveal if she's running too low overall.

I might have a team meeting with the Memory Care staff. They should understand how a dementia patient may say they don't want a plate of food, but, they really do and would eat it, if placed in front of them. And, there comes a time when most dementia patients need hand feeding and they may need to sit and offer it to her by feeding her.

There is just a lot of special dementia care that a Dementia Care unit should have, that sounds like yours doesn't. Can you check to confirm that they are indeed a licensed Dementia Care unit? Their practices sound odd, to me. My LO is in a licensed Memory Care unit and it operates much differently from what you describe.

If things can't be controlled, I'd explore if mom needs skilled nursing with her doctor.
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@cwillie Intersting idea, it takes away to warm up to new people so not sure if that would work. I have a few cousins in the area and ask them to visit and even to it at a meal time. That has only happened once in the 5 months she has lived there.
None of her friends visit either, I know they are just uncomfortable with dementia. But I know she would love to share a meal with them.

The whole it takes a village is true for our aging seniors as well. Everyone seems to run for the hills as we age and don't offer support.
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@Countrymouse The ALF has no other issues with her. She is very quite and compliant. They just keep saying they are concerned, and don't want her to wind up in a coma. Of course I know they are concerned with an liability on them. That is what make this frustrating is that she is happy there and her behavior is good for them.
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Tattoochick, your sort of situation always makes me wonder what happens to little old ladies and gentlemen who don't have a competent and concerned relative to supplement their care.

So if this ALF, and as you say every other facility in the area, has residents with Type 1 diabetes they're on their own with it? It seems bonkers. No disrespect to you to think that surely if you can do this blood glucose check then an aide can be trained to.

I'm really curious. What happens if God forbid you get taken out of action?

I'm sorry you're worried about her having to move, as well. Has the facility actually started making noises about that possibility, or have you discussed with them how they're getting on with your mother more generally?
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Could she afford to have someone come in to assist her with meals? I know it is galling to have to consider that when you are already paying the AL, but it would give you a break and perhaps enable her to stay there.
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For example; tonight I am going to her ALF at her snack time 8 pm to do an ACCUE check. Why because the doctors want to know what it is and there is no "nurse" in the building at that time to do it. But they are leaving me the stuff and I can do it. SO CRAZY.

This is every ALF in this area. There is a nurse the aids can call overnight to ask questions or inform them of a situation but not in the building. So I am going to do it. Trying not to go today, but just this evening.

Trying to work and earn some money to pay my bills. OK know I am rambling.

Just wondering if caregiver with a diabetic dementia has seen this before and can give advice.
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@Shane I understand what you are saying and have been working with both her endocrinologist or PCP to figure things out. Both however really feel that if we could get her to eat more it would help.

The ALF is trying to get her to eat again at 8 pm but she is at her worst in the evening, stubborn and just does not care.

I feel like I am just wating everyday for the ALF to say she can not live there anymore. This would mean a Nursing Home for her. I don't have anything against NH. Over the past year and half mom has been in 3 different ones in the local area and each cared for her. However, she gave up in them. She would not get out of bed, worse eating problems, did not want to bath. Plus contently call me in the middle of the night to say I was keep her in jail and it was not right and just not nice things.

At her current ALF she does get up, she dose (except dinner and night snack) she baths and will participate in actives. If she has to go back to a NH I fear she will give up again and not live very long.

It has been a long month and a half with this issue and I just want to figure it out. I even tried talking to her about what would happen if she doesn't try to do better with eating, but you can't reason with dementia.

My own depression and anxiety is bad right now, and I am being told to take a few days away, but it is hard to do that when everyday some one is calling me about her. I don't think there has been a day from January 2016 when I became her caregiver that I have not had to speak for her, run an errand, pay a bill, or many other things.

I really do need a break, but there is always a fire to put out with her. Sigh.
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Tattoochick, can you take your mom to her endocrinologist or PCP to re-evaluate her insulin needs? You have posted about several episodes of your mom dropping her BS, at various times of the day. Maybe the doc needs to cut it back or change it. Do you know what type of insulin it is? Is she on sliding scale coverage according to her BS? If so that's hard for her to manage. I am just trying to figure this one out.
If one had to choose, it would better to have high blood sugar than all these drops for her.
You can bring her glucometer in with you to the doctor visit as the machine keeps a history of prior BS for them to review.
I would make sure she had fast sugar even hard candy sources available at all times or glucose pills in her room.
It sounds to me she may need her insulin needs adjusted as she may be prescribed an amount from when she ate more but her intake now has changed.
Just a thought. My mom ate like a bird for the last couple years of her life. She wasn't diabetic though.
Please keep us posted.
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