Mom won't allow nurses to administer insulin and they may ask her to leave the community. Any ideas?

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Mom won't allow nurses to administer insulin and they may ask her to leave the community. Any ideas?

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Hey folks. Me again with the latest chapter of "Caring for mom from 200 miles away".

About a week ago we finally finished the transition of my mom from her sister's place to assisted living after a long frustrating bout of issues in regard to my mom's frontotemporal dementia. Mom hasn't done particularly well with assisted living and it looks like they are going to recommend a transition to memory care next week. I'm okay with this, I'm really just happy that they were willing to give her a shot in assisted living at all.

The bigger problem is that in the morning she's supposed to take a long acting insulin injection. She's been pretty good about this historically, but she always takes it on her own in the bathroom as she's very self conscious about the injection. Now that she's in assisted living she seems to be unable to move away from this routine and allow the nurses to administer the injection. This is causing problems as the facility is state regulated, meaning they have to administer medication and treatment and visually witness the process in order to confirm it occurred. Due to this my mom is being listed as 'failing to adhere to medication'. Given that this is outside of the required boundaries of state regulation, they are saying that if we can't get her on board with nurse administration of insulin, she may have to leave. That's hard to do when someone is dealing with FTD.

If they kick her out for this, I have no idea whatsoever what I'm going to do next. Any other state regulated facility is going to have the same issue. She can't go back to her sister's and she can't come here because I live on the other side of an international border.

The facility says not to stress too much, that they are going to dig deeper into the issue and see what they can do, but we haven't had a lot of luck with my mom since she started showing symptoms and history tells me that this worst case scenario is something I should start preparing for,

Any ideas?

Assisted Living Long-distance Caregiving Refusing Care

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Get her tested first a UTI right away. If this is a sudden change in her mental status, it's a medical emergency and she needs a workup.

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Unfortunately this is not a sudden change. We've been dealing with the issues of frontotemporal dementia for a long time now and this is pretty much par for the course. She is very obstinate. The lack of ability to be 'redirected' is the leading reason why they are suggesting her for memory care.

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I'd give the staff at the Memory Care unit the chance to figure it out and make it work. I was surprised at how all the troubles, issues, difficulties, etc., that the regular AL had with my LO disappeared when she went into secure Memory Care. They seem to just handle things. They are trained and I've never seen them have trouble getting any of the residents comply. I got the feeling that regular AL staff just didn't have the time or energy to deal with her. MC staff consider it normal behavior and deal with it. I hope it works out well for her.

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My husband takes the long acting insulin injection as well. He gives it to himself in his stomach. Recently he was in the hospital and the nurse asked if he would like her to give it to him in the back of his arm. He had never had it there before because it would be awkward for him to give to himself on the back of his arm.
They probably needed to see him take it and since he had a hospital gown on it was easier for all involved if the nurse gave it in the arm.
Your mom might not mind if the nurse gave it in her arm. It might be worth a mention to the staff to see if that’s a possibility. It goes in the back of the arm not on top but I’m sure the nurses would know where or could find out. Perhaps they could just give her the injection as something new and not discuss the stomach imjection at all? Just an idea.

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I regularly inject in the backs of my arms and prefer it over all other sites. To get the right location I just line up the back side of my upper arm against a door, corner, or edge like a car seat, and roll the fleshy back part forward, then inject near the back where the fat is. Fat doesn't have nerve endings so you'll know if you did it right.

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Like Sunnygirl, I also think you should hold out hope for the Memory Care staff being able to handle this situation. They spend every working day managing confusion and obstinance. They are masters of persuasion.
The community has a responsibility to give you a heads up about the situation, particularly since you’re managing your mom’s care from a distance, but I’d advise you to borrow some of their confidence that they’ll be able to get your mom to comply.

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What is your mom's prognosis? How much insulin does she take? If she has type 2 diabetes, what would her a1c be without the insulin? Strict control is less of an issue with age and comoridities like dementia. If she feels well and her a1c is under 8 or 8.5%, that might be acceptable. I liked the idea of an injection in another site. If you give her some space or a say in the matter, she may come around on her own to take it. There are also long acting insulins which allow leeway in time of administration-like Tresiba. This could be important if there is one staff member who she agrees to have administer the injection. If she missed one day, so be it. Perfection goes out the window with dementia. Blood sugar control is important to fight an infection and to feel good at this age-not so much to prevent complications like kidney failure, etc.

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Yes and no, I absolutely agree there may be a different way and the parameters are more lenient at this age and stage, you aren't as worried about the same things but BS control in our experience anyway can have a big affect on behavior especially when talking about cognitive issues. It is very obvious when my mom's BS is high, over the targeted high because she is moving slowly and thinking much less clearly. In fact I would say it's more obvious and she is less able to compensate or cover it up now then she used to be. So I wouldn't be quick to say only the a1c is important or simply skipping the long acting insulin without finding a replacement is ok. At least based on our experience.

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It sounds like she belongs in the Memory Care unit. There are different expectations there. They understand that people with dementia may not make good judgements about their own medical care. With my mother, I realized when she refused treatment while in the hospital for a short stay that she really didn't understand what she needed to do to get better (or stay well in your mother's case). I transitioned her to hospice care, where the expectations are even less. There are criteria for hospice, but at least with hospice nobody forces her to do what she doesn't want to do. Medicare also provides extra services during hospice.

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Your mother has the right to do this herself. I don't know what state you are in but call your state ombudsman. Medications have to be either self administered or administered by a licensed nurse or physician. Residents have rights and this is one of them

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There are lots of AL facilities that require all meds be given by them. As we know, not all AL's are created equal. Once when my mother was being hard to deal with and acted up demanding her own way, my brother got in her face and very sternly told her "Don't you do that again". She stopped her behavior and never did it again. She had Alzheimers but somehow that negative message stuck.

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I'd do the same thing

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Would it help if her MD prescribed that SHE be the one to administer it to herself, in addition with her having the right? I just worry about the need to witness it...they probably don't want the liability of having to deal with a medical crisis if she forgets...but then there can be a crisis with any of us at any time and it just has to be dealt with...and if it was her self neglect/forgetting that would contribute to this...then it can be dealt with then...at least I would hope it would buy you time...and if all else fails, maybe a short consult with an elder law attorney in her locale? I also have wondered about my mom's "mixed" dementia and learned about a ftd organization with a help line/web page...maybe check there?

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Self administering should be her right. I totally agree with you!

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I would echo the feeling MC staff may not have the same issues, they have seen this before and have a better instinct when it comes to Dementia patients, more tools in their toolbox. At the same time however there are a variety of new options for managing her diabetes these days. Obviously what she has been doing for a long time has been working and it's smart to leave what's working alone with Diabetes management but now that it isn't (administration problems count) I would consult her Endocrinologist or the medical person managing her diabetes. Hopefully it's someone who has known her/worked with her for a while, I am a little concerned it's going to be a brand new person connected to the facility but still there may be a fairly simple medication change or adjustment that will resolve the problem. If it is a new team connected to the new facility and she has had a someone managing her D for a while it might be worth insisting they collaborate with the practitioner that knows her. I say this only because patients react differently to medications and even timing (my mom for instance takes her Lantus at night) and the doctor that has worked with her for a while might have knowledge that will help them find the right combo faster (no we tried that and it doesn't work for her). We went through some of this when mom went into rehab after her stroke, the hospitalist there suddenly had all these great ideas about changing her diabetes meds even though what she was and had been doing was working fine. He meant well, thinking he had newer better medications (what he knew) but there was no reason to mess with her meds or routine and he was talking about overhauling it all which would mean trial, adjustment all of that stuff while she was rehabbing from a stroke with severe aphasia (she couldn't say our names still). I stepped in before it got too far and insisted her Endo and Primary be consulted on any changes first and I was then in touch with them. Her Endo was fine with one substitute if he really wanted so we let that happen but without the coordination it would have been a disaster anytime but while her brain was building new pathways, she was learning to speak and tell time again, Ugh! I digress, while I would caution against an overhaul if it can be avoided there might be an easier way to administer or medication to do the work of her current long acting insulin.

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Getting adjusted to her new surroundings will take time. With dementia, there is always rebellion, against a care plan. Be patient, be consistent, keep being supportive and caring. You have to shift gears now, you are the caregiver, not the child. It hurts, it is sad. It is just reality. One day at a time is an old saying, but that’s also just a reality now. I wish I could go back to being the child, and not have to be the caregiver. It’s just tough. Keep your chin up. Like Nike said, Just do It. That is not an endorsement of Nike. I’m an old, white woman, my mom and sis have Huntington’s. I’m a lifer at care facilities. Stay strong, and pray.

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Look into another assisted living facility or a NH. Then prepare for the transition.

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Shortly after I got my friend, Beth, with frontal temporal dementia, into a memory care apartment, she would not let staff members clean her up after she soiled herself. The head nurse told me I should take her to a geri-psych ward at a hospital to find an anti-psychotic drug that would calm her down without doping her up. It took phone calls to 3 different hospitals before I found one with an opening in their geri-psych ward. I was wondering how I was going to get her husband away from her because as soon as she wasn't with him, she was looking for him. When it was time for Beth to go up to the geri-psych ward, a bunch of their staff came into the waiting room and started talking with Beth--distracting her so her husband and I could slip out. It took 3 1/2 weeks to find the right drug and dosage, but once done, she was an angel to work with--agreeable, helpful--and never knocked out or dopey. During her stay, they had their anniversary and the husband's birthday. We visited for those occasions and brought cake to celebrate with and it worked well. The expense for this was covered by her health insurance, so we had no big bill to pay. I was their power of attorney in charge of their finances and health decisions, so paid attention to all those details. I never knew these wards existed or such medications, so the guidance I got from the AL/MC nurse was really important for me. She gave me advice for every step of her decline until hospice took over and she passed on. I was grateful for everything because I had never had this kind of responsibility before and working with dementia was all new to me. Good luck! I hope you have the same good fortune and guidance.

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My horrible ex husband who threw me and his 3 year old daughter to the curb so that he could run off with his lover had this disease and he didn't last long. His new wife got the duties of caring.

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Listen to them - they have dealt with similar behavior before - will they let mom inject if a nurse supervises? .... could be a comprization to try

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Where do you live that there are nurses administering medications in an Assisted Living? In my state ( Massachusetts)AL is considered non medical "housing". There are aides to "remind" residents to take their pre-poured meds. Unless resident can do own injections, can't live in AL. VNA nurse can come and "teach" resident how to administer injections, but not long term. Just curious. Would think all states should have same regulations.

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Yes, I have been told the same thing, they will only remind a resident to take meds. In Louisiana AL does not give meds.

I am just starting to look at places as an option for my mom.

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Ask if they can supervise her giving herself the shot.

Some of these rules are stiff and difficult but there is usually a solution that works for all.

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For those that live in areas that do not have Assisted Living that provides actual care, I am in AZ and our AL facilities have different levels of assistance, we also have care homes that are classified as AL but they are for minimal assistance to completely bedridden and you can age in place, your rent goes up accordingly.

Just to help clarify that every state offers different services under the same names. Eg, MC here is locked down, wheel chair required facility that looks like a hellhole for the residents, no pictures on the walls, very sterile and awful.

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I’m in Cali and the assisted living facilities provide different levels of care too-IL, AL, memory care, and respite care. And some have nurses on staff. One of the nicest facilities has an upscale restaurant! California’s regulations allow properly trained staff-doesn’t have to be a nurse or a CNA-to help administer medication to the residents BUT only if the medication is prescribed by the residents doctor. The training is 24 hours with 16 of it behind hands on training.

Mom won't allow nurses to administer insulin and they may ask her to leave the community. Any ideas?

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