Managing Diabetes in Person with dementia

aconite

My DH has been diagnosed with probable ALZ. He's still functioning very well - taking care of most activities of personal care for himself.  I've had to take over counting out meds and making sure he takes them as well as managing appointments.  I don't think he could handle bill paying/management of finances, but luckily I've always done that for us. 

As far as his diabetes - I came late to the realization that he hadn't been doing his finger sticks/testing his sugar levels.  I've been reminding him, but unless I remind him, he doesn't do it.  I'm thinking of requesting that his doc prescribe a continuous glucose monitor for him at his upcoming appointment (insurance requires a prescription before they will cover it).  Anyone had any experience with the continuous monitors?  Has anyone experienced reluctance to leave the patch on (I'm concerned that this will be a problem as his disease progresses)?

I've been putting his insulin pen out before meals, but last night he took his longer overnight insulin before dinner (he got to the pens as I was busy getting dinner).  I had to hide the pens to make sure that he didn't overdose at bedtime. I've also noticed that even when we have meals with the appropriate amount of carbs, I find him snacking between meals - particularly on carbs/sweets.  I'm concerned that the management of his diabetes has gone by the wayside while I've not been paying enough attention.  It's hard to decide what to take over since he's still doing deceptively well in many other areas.

Any other suggestions/ideas for management of testing/insulin dosing are appreciated. I know that I will need to be more in charge as his disease progresses.

Stuck in the middle

I don't know a lot about diabetes, but I know insulin overdoses are really bad.  It's good he didn't take more than one pen!  I think I would lock up the meds.  I would also set the alarm on my phone for whenever he is supposed to check his sugar and remind him to check it.  That way, the phone is nagging him, not you.

It sounds like you're doing a good job.  It is hard to know what to take over.  I find myself watching to see what abilities my wife is losing, and taking over one thing at a time.

Ed1937

I would love to have a continuous glucose metering system. My problem is hypo glycemia, so I'm not a diabetic, but I think medicare will not pay unless you are.

JDancer

An A1C check will tell you what's been going on for the last three months with his blood sugar. I'd start there. If it's not too bad, I'd lock up the meds and do the best you can. 

Remember, low blood sugars (if there was an insulin overdose, for example) can be deadly, but high blood sugars are more of a long term damage (kidneys, eyes, circulation) kind of thing.

Many PWD love sweets, so high blood sugars can be hard to avoid. But, personally, I've learned to chose my battles. I wouldn't worry too much about high sugars, unless they were really high-over 350. But that's my opinion,  for my situation.

sandwichone123

My dh got a continuous monitor just before diagnosis. He used it for a couple of weeks and then was disgusted by the whole process including cost (the weekly supplies were phenomenally expensive). After diagnosis he tried to use it one more time but forgot about it and scratched it off. He is now refusing all medical care and eating what he wants. I figure let him enjoy life while he can--I don't see the sense of denying joy today to keep him healthy long-term when he has no better future to look forward to.

Not exactly tips for managing, but it's the story I have.  

jmlarue

All the women in my family are/were T1 diabetic so I know a good bit about control. Full time caregiving for our mother over her final 2 years meant we needed to control her diet, testing, and insulin injections. 

The fundamental thing to know is how to count grams of carbohydrates. It's the only part of food that is converted to glucose (sugar) and it's the blood glucose level you need to control with insulin. You can take a lot of the work and worry out of managing your LO's glucose level if they can be transitioned to only taking long-acting insulin once or twice a day. Given your somewhat limited knowledge, it would be best to ask the Primary doc or Endocrinologist to guide you through the transition. You won't be able to keep as tight a control on blood sugar levels, but it can be maintained at an acceptable level so that you are not risking extremely high or low blood sugars. The advantage is that your LO will not need finger sticks 4 or 5 times a day. Just one finger stick on waking to check fasting number and one late in the evening to see if your LO needs a snack before bed to prevent an overnight low. You will need to continue to have a small supply of short-acting insulin on hand to handle sweets binges or the occasional high blood sugar due to illness. We seldom did additional testing for extreme highs or lows unless there were noticeable symptoms - i.e. unusual sleepiness, lethargy, or thirst (high) or unusual mental confusion, sweating, shaking (low). Transitioning Mom to primarily long-acting insulin worked so well for her, I and my sisters chose to do the same for ourselves. 

I would not recommend CGM (constant glucose monitoring) for a person with dementia. The sensors are too easily knocked off or taken off by absentminded picking and rubbing at it. Also, the adhesive on the sensor can be damaging to the very thin, often dry, saggy skin of elderly people. You can always give it a try if you think your DH can tolerate it. Freestyle Libre still provides a 2 week trial pack free of charge, I think.

jmlarue

Ed - you are partially correct. Medicare will not usually pay for CGM unless one is an insulin-dependent diabetic. Even then, they will often deny the claim unless the doctor appeals to say that close monitoring requiring 4 or more finger sticks per day is medically necessary. This appeal process can sometimes work for hypoglycemics who cannot recognize the symptoms of their low blood sugar and must test many times per day. The only CGM that is automatically approved is for diabetics using an insulin pump.

Quilting brings calm

Medicare  has rescinded the 4  times a day finger stick rule for the continuous glucose monitors. However the patient must use insulin  multiple times a day ( either at least 3 or more than 3, I don’t remember which) - or use a pump.  

My spouse ( no dementia) has tried both the Freestyle Libre and the  Dexcom.  He often accidentally knocked off the Freestyle as it went on the back of the arm.  It’s a lot less expensive than the Dexcom, but not as accurate. The Dexcom goes on your stomach area.  It’s a sensor and a transmitter.  It’s adhesive is very strong, and it’s hard to pull off at the end of the 10 days.  I’ve been pricing the cash cost for the Dexcom and it’s about $500 a month for 3 sensors, and a 90 day transmitter.  The Dexcom automatically sends readings to your phone every 5 minutes.   you have to hold the phone up to the Freestyle    to get a reading,   Neither system will let you reuse a sensor once it is removed. 

JDancer

FYI- 

If blood sugar is high, they'll be hot and dry. Warm, thirsty. Check level and treat.

If blood sugar is low, they'll be cold and wet. Sweaty, chilled, possible change in level of conscience. Give a sugar/carb and then a protein ASAP.

dayn2nite2

What was his last A1c?

aconite

We had blood work done last week.  Won't see the results until the doctor's appt. next week.

ARgirl

I read this post with great interest, as I have had similar questions regarding diabetes and Alzheimer's.  My husband has had Familial Early Onset Alzheimer's x 10 years, and type 1 diabetes since the age of 14.  He is now 69.  He is home and I am his caregiver. 

He has used an insulin pump for some 30 years,  and now, we have a continuous glucose monitoring system.  I honestly cannot imagine being without the CGM. Finger sticks became quite the ordeal as he has had significant cognitive deterioration.  Medicare does pay for the CGM because we use an insulin pump, and were finger sticking 5-6 x a day.  The CGM heads off extreme lows (which drastically affect confusion), and highs before either are dangerous.

One of my challenges is "control" of blood glucoses within the realm of Alzheimer's.  I have asked our physicians about any research about the difficulty controlling glucoses as Alzheimer's progresses.  Guess what? No research that we can find.  I felt a bit abandoned that control of diabetes with Alzheimer's just wasn't important enough to research.  But enough said there.

We have had no problems to date with him removing any of the devices attached to him, though he honestly does not know what they are.  He just knows I manipulate and "mess with them" throughout the day (and night).  The CGM has saved my sanity, sleep and ability to control his diabetes as best we can with a debilitating, wasting disease such as Alzheimer's. NOT any easy task. 

Our next step is pursuing an insulin pump that communicates with the CGM and administers insulin automatically within specific parameters.  Medicare approves insulin pumps for 5 years before a new one can be obtained. The process has begun for approval.  I can update anyone interested.  I will say some have asked "why do you bother" with new equipment, etc. when he is lost within this disease.  Well, our endocrinology team lead said it best:  "As long as he is alive, he deserves the best level of care feasible.  He is important and we will not write him off."   I think that sums it up (besides the fact that I love him).  Not easy to manage either disease, but the combo of both is a challenge like I have never faced.  Thanks for listening.

elainechem

I have no experience with diabetes, but my husband was prescribed a rivastigmine (Exelon) patch. When he was in stage 6 of his Alzheimer's, he began to take off the patch no matter where I placed it on his back. I guess it bothered him. A person with advanced dementia may start fiddling with things attached to their bodies.

dayn2nite2

aconite wrote:

We had blood work done last week.  Won't see the results until the doctor's appt. next week.

I don't bother to wait until appointments - your doctor should have an online portal where you can see your lab work, or if the lab work is done at a particular hospital system, you can see all the results.

I had lab work done last week, and in about 3 hours I got a message on my phone that the hospital system had new results for me.  My doctor gets them too, sends me a message through the online portal the same day whether any changes are needed, and we discuss other things during my appointment.

JDancer

Aconite- Did you get blood results? What suggestions did the doctor have?

jmlarue

ARgirl - you mentioned consulting the docs about research on controlling diabetes in a PWD and being told that there really isn't any. One thing they could have mentioned is that some "psych" drugs can have dramatic effects on raising blood sugar - Seroquel being one of them. You'll need to be on alert any time your DH adds a new prescription. The other aspect that is rarely disputed is the effect of stress on diabetes control. Stress can both raise blood glucose and cause it to drop to hypoglycemic levels depending on how the body responds to the stress. As I'm sure you already know, just about any sort of infection or illness can also cause wild fluctuations in blood glucose levels. Trying to manage the highs and lows for all of the possibilities can be a daunting chore. The insulin pump may be a good option for your DH, unless of course he begins to tamper with it as his cognition declines. If you are a Facebook user, you might find joining a couple of Facebook groups specifically for diabetics as a help. You can get good answers to many pressing questions from other diabetics much faster (and often, more accurate) than you can from your Primary or Endo clinic. Maybe it's just me - but why does every health crisis seem to come up after closing hours, weekends, and on holidays?

ARgirl

jmlarue:  

Thank you for your thoughts about this issue.  Sometimes in the depths of caregiving, answers are right in front of you and you just can't see them.  Interestingly enough, when my husband is sleeping, we usually have good glucoses; the minute he awakens they go awry, then as we approach evening, they stabilize.  Stress definitely could be contributing to this challenge. I will also keep in mind the psych drug interactions as well. 

At this time, he does not fidget with the devices. He just says I am "always working on him". Lord only know what he really thinks when I am manipulating this equipment.  He always asked me if it is "good or bad", so somewhere he is connecting that the numbers are important?!? I have the pump locked so he cannot manipulate the buttons. I will take a look on FB to see what groups are out there. Again, thanks for the feedback and info. Always, always helpful. And I love your pic - my language in my head has deteriorated terribly since being a full time caregiver.  

sunshine5

DH with dementia has Type 2 Diabetis. He has a sweet tooth but lately he has started eating too many sweets. As a birthday treat, I ordered 2 boxes of Indian sweets which I only order couple of times a year. To my surprise, he ate one whole box of sweets leaving none for me, second box is also almost gone!

It seems I won’t be ordering sweets or getting my share of sweets.

I have also had to cut back on alcohol as DH had seizures !

Too many sacrifices due to no fault on my own! Don’t we get to enjoy simple pleasures of life in our old age?

I also ordered the continued monitor without realizing it was only meant for type 1 Diabetis !

What May help is other than putting on a alarm is putting post it sticky notes with reminders! I had to put notes in his bathroom so he remembers to check his blood sugar before he goes for his morning walk! Seems to be working!

jmlarue

ARgirl - Dealing with dementia is tough enough. Controlling diabetes at the same time is a gargantuan task. One thing I have not mentioned before is that using an insulin pump will hit a brick wall if your LO needs to enter a care facility. Most will simply refuse to accept a diabetic on an insulin pump. They do not have the trained staff or the time to devote to managing diabetes that way. Personally, I don't know of anyone who hasn't had to remove the pump and return to subcutaneous injections when they enter a care facility. I think it's a pretty common practice for  hospital stays, too. Prepare yourself for that possibility and just know that your LO's blood sugar is probably not going to be well controlled. It's only been in very recent years that diabetes researchers and endocrinologists have started to acknowledge that trying to keep tight control of glucose levels in the elderly may be doing more harm than good. Acceptable A1C numbers (for example) are going up to 7.5 - 8.0 for elderly diabetics. For folks with late-stage dementia, that number is now as high as 9.0 - with a fasting blood sugar as high as 180 and a bedtime blood sugar as high as 200. Why? Because low blood sugars further damage the brain and should be avoided as much a possible.

As a Type 1 diabetic, I've had to come to terms with new ideas of what is considered acceptable control. That now bears a relationship to my age (71), my realistic life expectancy, and how to avoid some of the lost quality of life issues of days gone by. I'm done with the 5 insulin injections and 5+ finger sticks per day. I'm down to 2 injections (fasting and bedtime) and 2 finger sticks. Occasionally I'll take a couple of units of fast-acting to cover a blood sugar over 250. I actually find this less burdensome than the insulin pump and CGM.

Donr

I have been a diabetic for 55 years. I have been using the insulin pump for 25 years and CGM for around 15 years. It takes a lot of effort to maintain a proper blood sugar level. When the day comes that my brain is a problem, I will have to give up the pump. I am 77 years old and have seen it all.

aconite

Thanks to everyone for all of your responses.  I haven't had a chance to be on the forum for a number of days.  Trying to get some of our garden planted along with other normal day to day activities.  His A1C was 7.2 which the doc said was acceptable so even though the checking of blood sugars and his diet weren't what was considered good a couple of years ago, it's not as bad as I had feared.  We are checking into the CGM - doc is coordinating with the insurance company.  I feel that in the short term it may be better than me constantly needing to remind him to check. I hear the concerns that as the disease progresses he may be prone to fidget with it and will keep that in mind.  We're still in the early stages of this journey.  I'll post again about our experiences with the CGM if in fact we do get one.

wiiliscreg

What kind of meds do you guys need for Type 2 if any?

Brigv

wiiliscreg wrote:

What kind of meds do you guys need for Type 2 if any?

I have Type 2 diabetes and I'm on Ozempic now. I should say, it works for me and even helped me lose weight (of course, together with diet and exercise). Moreover, this medication is proven to lower the risk of stroke and heart attack. You can check the info about Ozempic online https://www.canadapharmacy.com/products/ozempic and discuss it with your doctor.

wiiliscreg

Appreciate some answers here

Brigv

wiiliscreg wrote:

What kind of meds do you guys need for Type 2 if any?

Well, the most common medication for Type 2 diabetes is Metformin. But of course, there exist other solutions. I've been living with this condition for more than three years. As I struggled to lose weight, my doctor prescribed Victoza https://www.canpharm.com/products/victoza Taking it alongside a diet of 1200 calories a day, I lost about 34 lbs in three months. In short, this medication works great for me. You need to address your doctor first, and you can ask about Victoza. 

towhee

Hi Williscreg, sorry I do not have an answer for you. But if you will start a new thread using the green add topic button at the top of the page you will get more responses. Right now your post is pretty much buried.