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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?

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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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Portmarly Feb 2019
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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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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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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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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PeterS Feb 2019
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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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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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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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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Judysai422 Feb 2019
Self administering should be her right. I totally agree with you!
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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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Lymie61 Feb 2019
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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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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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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NeedHelpWithMom Feb 2019
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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