Balancing Independence and Safety

courtneysousa · June 11

My mother was diagnosed with early-onset Alzheimer's last August at age 65 and is scheduled to begin Kisunla infusions in July. We are hopeful the treatment will help slow progression, but in the meantime we're struggling to balance her independence with her safety.

For those who have been through this, how did you navigate the transition when your loved one was still very aware and capable in many ways, has issues with judgment and memory progessing?

For example, my mother always handled the household finances. My father now manages the bills, but she still feels the need to review everything repeatedly and has paid bills twice (she'll do things again when my father leaves for work). We've also had medication concerns. She manages her regular medications well that are prefilled (she doesn't question them), but recently she took an extra dose of prednisone because it was new for a short illness. After we put them into her daily containers, she for whatever reason, decided to pick them out and reset them incorrectly.

Her doctors encourage us to preserve her independence as long as possible, but it's becoming increasingly difficult to know where to draw the line. Suggestions like securing medications or limiting access to financial paperwork are very upsetting to her because she is still aware of what is happening.

I'd appreciate hearing how others approached these conversations and decisions, especially in the earlier stages of the disease.

April23 · June 11

Welcome to the group no one wants to be in. There is a wonderful book called The 36 Hour Day that is good to read after diagnosis and deals with how to navigate a multitude of topics.

One thing I learned here is that your LO’s safety must guide your decisions first and foremost. I know taking away her independence is hard. But serious medication and financial mistakes are things that can and do occur. It often takes a crisis for families to realize they should have intervened sooner. You always want to stay one step ahead.

I know this does not make the “how to” any easier. The reality is, it won’t be easy but it will become necessary.

ltbub0418 · June 11

Thank you very much for your reply. I completely agree his safety is priority #1.
Dad and I do his medications together and I check everyday to ensure he took them. We have alarms set on both our phones at medication times. His pills are organized a week at a time for AM and PM doses. I check his vitals everyday and (for some strange reason) he now loves to tell me about every symptom he feels and his daily bathroom output Lol Mind you I haven’t asked but he likes to report in. I’m hoping this lasts a while. I pray I can always be that step ahead that I’m striving for. I also do truly believe that God has a plan for everyone and regardless of my best intentions and efforts Dads plan will unfold. I pray for a peaceful slow progression thru this disease.
Thanks again so very much.

Emily 123 · June 12

Hi courtneysousa,

'Independence for as long as possible' isn't a reasonable goal for very long with the disease and a bit of an unfair expectation for the caregivers, who have to keep their person safe. It's scary how quickly a person with dementia can get themselves in trouble even with oversight.

Unfortunately the disease's progression will mean your mom won't have an appreciation of how she's being affected (anosognosia). There's not much point in getting her upset by discussing her disease or the losses she's having —she won't agree she's having issues because the disease prevents her from being aware of them. So no discussions or suggestions about what she might need, just do what you need to do to put safeguards in place..

Of course you can work around her to preserve as much of her feeling of independence as you can (it's not going to be a total win) while actually creating a neutral zone between her and prior responsibilities. A lot of this is about creating a little bubble around your person where they can still function but be safe. It is exhausting.

Try to deflect or avoid conversations that tend to remind her of tasks/things. If she's insisting that something needs done just agree with her or tell her you've done it/will do it.

The things that may trigger her could often be visual, and 'out of sight is out of mind'. Try to hide the visual cues, like the bills, for tasks she gets upset about. Consider if your dad can go paperless and pay bills online, or offer to take that off his plate. Hide the stamps or envelopes. Lock down emails to her contact list only.

When you have to add another safety net and she questions it, try to find a reason for a change that resonates with her. Sometimes I'd just tell my mom 'Oh, well the doctor wanted you to try xyz", or "I needed to set your meds up this way so that I know when to reorder them". Some things are just going to be fails no matter what.

JulietteBee · June 12

@courtneysousa,

A cry for independence is very common. My DM begged to maintain hers as if it were a life or death matter.

There comes a time when we, adult children, have to reverse roles with our parent/s. Safety trumps every other need they may have or they perceive they have.

As my mom progressed, I took on all her financial & medical accounts, switching from paper to electronics so she never got anything in the mail she would think to "handle" herself, brhind my back. I am her DPOA. Your dad needs to do the same.

Medication management is vitally important. As your mom progresses, she will not be able to be trusted to take her meds.

My mom previously poved that she was not consistent with independently taking her meds. If 90 pills were issued, which were expected to finish in 3 months, I was finding mom had tons of pills left over when the 3 month period had come & no refill was necessary. Since that observation, I then started setting out her meds a week at a time, AM & PM. Mom started accidentally overdosing on them as she would lose tract of day and time. If she took Sunday's AM dose, a short time later, she would take Sunday's PM dose. Later that night, not seeing any pills in the Sunday PM section, she would take Monday night's pills. Some days she would take, for example, Monday morning dose and a few minutes later, forgetting she had already taken her meds, would then take Tuesday morning dose. The scariest thing yet, one day she decided to empty a few of her pill bottles on the counter and got confused by them all. In trying to put them back in the pill dispenser she put 7 of the same pills for Friday morning and 2 for Friday night. That med was for her heart and she was supposed to take 50 mg in AM & 50 mg in PM. Had I not be impressed to go to her ILF to visit that day, she would have taken 350 mg that morning and 100 mg that night and CODED! My mom just moved in with me 2 weeks ago and med management was the final function she lost that scared me into being proactive and taking away any remaining independence. It has been a rough 1 year and 8 months experiment at allowing her to retain some level of independence when I moved her from her marital home to an ILF. Except for her being able to still choose what to eat or wear, the buck literally now stops with me.

It would appear your mom's doctor thought he was saying something useful by telling you to have her maintain independence as long as possible. Not living the day to day with her, he fails to recognize that your mom is beyond that point. She cannot and should not be trusted with independence. Independence is earned. Sadly, our moms have lost that privilege.

Let me not fail to say it, mom should also no longer be allowed to drive. She is a danger to herself and innocent motorists & pedestrians she has to share the roadways with. If she is in an accident, with a dementia diagnosis on record, your dad could be sued and would have a steep price to pay.

Mom will be unhappy with the conversation & the final decision, but safety supersedes happiness.

All the best as you travel this potholed road leading to an inevitable destination. Remember you & dad are NOT doing any of this to mom. Dementia is the guilty culprit.

H1235 · June 12

Welcome. This limbo in the beginning is so tough to navigate. I think this doctor has probably never cared for someone with dementia and has given you horrible advice. Sometimes unfortunately you have to choose between happy/independence and safe. As independence is lose many with dementia become angry and suffer from anxiety. If this end up being a problem talk to her doctor (maybe a different one) about medication to help her. There are a few things that might make it a tiny bit easier. Never tell her she can’t do it because of dementia or dementia symptoms. Do it behind her back without consulting her, if she gets upset apologize or say you were trying to be helpful. Fib, if you don’t want her to drive, tell her something is wrong with the car (disable it). Avoid the sensitive topic at all costs. Do paperless billing if the paper copy is a trigger. Set credit limits on cards at a minimum. There are people here with horror stories of losing their life savings because their person with dementia had too much access to finances. Also keep in mind that just because she was fine with something today doesn’t mean she will be tomorrow. It’s best to have safety measures in place that are one step ahead of her current needs. For all the things you see her struggle with there are many more that stay hidden. I took my mom to the dentist every 6 months and she got a new replacement toothbrush. When I moved her out of Al I discovered a stack of toothbrush’s. She hadn’t changed her toothbrush in way way too long. I just assumed it was something she could manage on her own. If I had inserted myself into her personal stuff enough to be aware of this she would have been absolutely through the roof mad at me. Its so hard! I can’t stress enough the importance of seeing a lawyer if that has not been done since diagnosis. I will add some references.

understanding-the-dementia-experience.pdf

DBAT.pdf

Anosognosia and Dementia - AgingCare.com.pdf

https://iona.org/therapeutic-fibs-ok/

Balancing Independence and Safety

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