Type 1 Diabetic LO with Alz

Teachertee

Hi everyone,

My mom has an insulin pump with Type 1 diabetes and Alzheimers (diagnosed by a neurologist).  Her endocrinologist gave her a 1 month trial period for us to get a grip on how her independence with diabetes management is declining.  My dad is her primary caregiver and is in such denial.  He's refusing for her or him to go live anywhere else and continues to dismiss any discussion of bringing help into their home.  

The different components of her diabetes equipment require a lot of maintenance, changing her infusion set (tubing that gets insulin from her pump into her body) every 3 days, changing her sensor (a continued glucose monitor that watches her blood sugar level and alarms when it goes dangerously high or low) and a transmitter (sends a signal from the pump to the sensor and now to me and my sister via a tracking app on our smartphones) every 3 months.

The endocrinologist said these items need to be changed out according to this plan in order to continue self management, however she's forgetting to change items, changing some out without someone witnessing it or drawing a complete blank on how to change them; something she's done for over a decade and even the career she retired from as a Certified Nurse, Insulin Pump Trainer and Diabetes Educator.  My mom gets combative with us when we alert her about a high or low sugar level and reminds us of her knowledge and past career achievements.  In the same breath she asks what day it is and whether she just had a meal or needs to eat.

It's becoming really dangerous and while I live closeby, I also work fulltime.  It's been rough trying to rush over to address frantic telephone calls due to her being in hysterics and my father getting overwhelmed with a medical emergency.

Any experience with this or suggestions for getting caregivers to receive help? Or get the ball rolling to explore options? I've shared links for the local department of aging and a group called The Options Group that maps out logistics of every scenario for your LO (living at home with family, having carers come in the home, and different levels of care within facilities) along with the expenses for each.

This is hard! I miss my mom and want her to be safe, happy and around as long as possible. Thanks for reading.

Tara

M1

Tara, that's a terrible combination for sure.  I am so sorry for your difficult dilemma, there have been other threads in the past about how difficult it is to manage insulin in a diabetic with dementia.

Almost certainly, someone else is going to have to take over her insulin administration.  If she won't let anyone else handle the pump, then she will probably be better of without a pump--I say that primarily based on the infection risk if her sites are not rotated carefully.  

That will mean going back to multiple daily injections, which she will likely also fight, and which your dad may not be able to handle.  Along with that, her glucose control will not be as tight--but frankly, if she already has dementia, that may be a very acceptable tradeoff at this point.  Sepsis from infection and hypoglycemia from an. insulin overdose are far more immediately risky for her than a higher hemoglobin A1c at this point.  

I wonder about your dad possibly having cognitive decline too, if he cannot grasp the reality of all this.  If he is not able to manage her insulin either, then they may be forced in to separate living circumstances.  How very, very difficult and I'm sorry.  Do you have power of attorney for one or both of them?  Sounds like that is going to matter.  If you don't have it, you may need to pursue getting it.  

Soul Mate

My husband was a type 1 diabetic for about 45 years when he started having memory problems.  He was on a pump and the doctor thought it too dangerous to continue because of his increasing dementia.  We switched to fingersticks, but they were a lot trouble to do so he eventually went on a glucose monitor (Dexcom brand).  A sensor is injected into one’s body and it sends signals to a meter which beeps when the blood sugars go too high or too low. The sensor has to be changed every 10 days.  We had to manually inject insulin as needed.  I had to help him inject the sensor into his body and I had to monitor his dietary intake and assist him in injecting his insulin doses.  This process was early enough in his journey that he got used to the routine of changing sensors.  

 

 

My husband had vascular dementia, not alzheimers, and so did not lose his short-term memory at the beginning of his journey and so was able to understand and get used to the changing of the sensors.  By year six, he lost interest in everything except eating and being on the go.  He wanted to be in constant motion.  I could not keep up with it and put him in memory care.  He lasted about 4 days.  There was no regulation or oversight of his diet; snacks were readily available. His blood sugars shot up into the 400s; they “lost” his meter a couple of times.  The evening of day four he “got aggressive”, something that had never ever happened before and they sent him off in an ambulance to be drugged.  

 

When I picked him up in the morning, I had to load him into the car in freezing weather dressed just in a hospital gown – no coat, no trousers, no shoes or socks.  His cognition had dropped. That day I noticed blood in his urine.  He was hospitalized for observation and died in hospice a week later – still not sure what was the cause of death.  

 

Ironically the memory care was part of a large senior community that had a medical practice associated with it.  I chose it feeling like if memory care didn’t work out, he could move to the skilled nursing floor.  Turns out in the skilled nursing floor the patient has to push the call button when they need something.  And there are no windows for observing a patient because of “privacy” laws.  However you can hire a round the clock “sitter” to stay with the patient and the sitter can seek help when necessary. 

 

        I am sorry that you and your mom are in this situation and saying prayers that you get this worked out somehow.  I have since learned that Teepa Snow advises a "respite" visit to check a facility out before a dementia patient is permanently placed so the family can assess whether it is appropriate or not.

Iris L.

Teachertee wrote:

It's becoming really dangerous and while I live closeby, I also work fulltime.  It's been rough trying to rush over to address frantic telephone calls due to her being in hysterics and my father getting overwhelmed with a medical emergency.

IMO, you need to request Family Medical Leave to get things under some degree of control.  Note, I did not say under control, because control will be a moving target.  Something else will always come up.  You need to know for sure why your dad can't see what is happening, is he experiencing early dementia also?

 

Any experience with this or suggestions for getting caregivers to receive help? Or get the ball rolling to explore options? 

There are groups that will give you options.  IMO, read the threads first and learn what the pros and cons are for each option, before you talk to the group.  Members have posted about those types of groups also.

 

Iris

Marta

Hello. Unless your mom’s resistance to accepting help is addressed, it won’t matter what type of care is arranged or what type of insulin delivery system is selected. First step is to speak with PCP or neuro about meds that can be trialed to reduce her resistance. Otherwise, I foresee an unfortunate death from hypoglycemia. 

I concur with Iris that you should take FMLA, at first continuous until your mom is safe, then intermittently for crisis management. 

Your father may also need evaluation.