Maintaining independence during early stages

Gchilds · April 10

Hi, my mom (58 years old) was recently diagnosed with mild dementia. My siblings and I are trying to navigate this new reality and find a balance between keeping her safe and allowing her some independence.

She’s on medical leave from her job because her performance had been declining. This means she’s home 24/7. Seeing her at home all the time with nothing to do is a bit worrisome since she was always mobile. Our fear is her seeing her diagnosis as restrictive leading her to a depressive state.

She’s still capable of taking care of herself, but she needs help with paying bills, managing finances, and taking her medications. We had to donate her car for safety reasons.

We’ve also noticed that she sometimes doesn’t realize where she is and believes she’s at work or needs to go there. This can lead her to wander outside, so we keep the keys in a safe place.

On the whole, she has more moments of clarity. Since she’s in the early stages of dementia, I’m hoping you can suggest some ways to help her maintain her independence, especially when it comes to going outdoors. What adjustments do we need to make to ensure her safety? What activities can she engage in to keep herself occupied and entertained?

My siblings and I are between the ages of 22 and 35. We’re all working and/or going to school, so we don’t have a lot of time to go out with her weekly. Between doctor visits, applying for assistance services, and managing her affairs, there’s not much time left.

Thank you for any suggestions you have.

Quilting brings calm · April 10

I know you want to think she’s capable of being alone… but once she wanders off ‘going to a non existent work’…. She’s not. What if she wanders into a cornfield, a pond, a busy intersection… and what if it’s 0 or a 100 degrees outside? In the snow or the rain?

Wandering is not mild dementia…it’s moderate unless she has a UTI. Once she starts wandering, she needs to be supervised 24/7. If someone staying with her at night and weekends, then check into adult day cares or home aids. Start the paperwork to get her on social security disability. That takes a while.

I’m sorry you are all dealing with this at the ages you are. People close to retirement and dealing with parents with dementia often end up retiring…. But that cannot be options for you or your siblings because you have to provide for your own financial future and that of your present or future families.

H1235 · April 11

Welcome. Does she have old hobbies she might enjoy doing now that she is not working. Of course they need to be something she can safely do and something that she is capable of doing without getting frustrated. Puzzles, reading, sewing… I have no idea how you keep her from wandering outside. I’m gathering she is alone at home? I don’t understand what keeping the keys in a safe place means. In my opinion you want to move her before her current living situation becomes unsafe. You don’t want the fire she narrowly escapes from to be a wake-up call. As QBC pointed out wandering onto a busy highway may be more than a wake-up call. I have attached a staging tool. Notice it gives some suggestions for care.

https://static1.squarespace.com/static/6372d16ea4e02c7ce64425b7/t/63f7b80d80d8aa3e3aa4a47d/1677178894184/DBAT.pdf

psg712 · April 11

Sadly, I agree with Qbc that she is farther along in her dementia journey than you believe. The biggest red flag in your post is that she sometimes doesn't know where she is and thinks she still needs to go to work when she has been on leave for a while. If she has that level of confusion, might she skip medication or take it twice? Even if you have it in a labeled pill box, does she know it's Friday and not Saturday? What if she decides to get on a bus and go down to the bank and empty her accounts? Unfortunately even when someone is in moderate stages of dementia, they often have the capacity to act "normal" in public so no one would realize she is impaired. And she is an easy target for scams over the phone, online or by mail.

Her work management must have seen significant issues to approve her leave. She is fortunate that they did not simply fire her for poor performance. Hoping this means she still has some benefits.

Who has power of attorney for finances and for healthcare? You need the legal grounds to act on her behalf since her judgment is not sound. Her doctor may be able to help by documenting her cognitive deficits. In my experience, it's usually the family who is more in touch with how she is functioning at home.

Can one of you spend a weekend with her in her home? That will let you see how she handles food prep, personal hygiene, talking with strangers on the phone, handling unexpected events. Don't help her, just observe. Ask her what she would do if there was a fire. Better still, set off her smoke detector intentionally and see how she responds without you saying anything.

I know this all sounds extreme, especially when she has "moments of clarity." But as many members of this forum have counseled, you need to plan care around her worst-functioning days, not her best. She may not like it. But you want her safe.

TheMonck · April 11

https://alzconnected.org/discussion/72767/maintaining-independence-during-early-stages

Sounds like you need an in-home caregiver.Try to remember what games she liked and engage her in those.Family being around her is the best thing for her.

DK

harshedbuzz · April 11

Hi and welcome. I am sorry for your reason to be here, but pleased you found this place.

I can appreciate wanting mom to independence. But that ship has already sailed. It can be hard to accept that care needs and supervision need to be appropriate to mom when she's at her worst (confused, lost and/or delusional) and not to some aspirational notion of a "good day". You say you are keeping the keys safe— will she not leave without them, or does she need them to exit the house?

PWD lose the ability to entertain themselves. They lack the initiative to plan and execute an activity and are often apathetic about things they used to enjoy. She might do better in an AL with supervision and planned activities.

HB

nopost · April 12

See a disability lawyer asap-like Monday- to be sure to get all the benefits she may have while on employee status . Does her company have short term /long term disability? Long term care? Bring her benefits overview and all letters to the meeting.

If so being on that may let her keep medical coverage for a while or until retirement - varies by company. If you wait and lose that one time bite of the apple there is a two year wait for medicare if she is approved for SSDI .

You and your siblings are understandably busy — you can't take a 24/7 schedule and divide it up to ensure constant care coverage—I've seen that work with young retired adult children in big families but not at your ages. One option is that you hire a professional care manager to assist and plan getting her placed and dealing with the house etc. since she sounds like she shouldn't be left alone at all.

An elder law attorney, which should also be a stop to get the documents you will need to manage her affairs in the future ,will be able to recommend a care manager /private conservator . Also, they can explain about how the positions of healthcare proxy and holder of DPOA work.

Most folks here say splitting the duties are hard - then the care person doesn't manage the money and has to ask/justify spending to the DPOA — but then that person carries the larger burden.

You want to "keep.. her safe and allowing her some independence"- it's not like a child where they learn to return something to a neighbor two houses away, then expand their skills -walk a few blocks to the store and manage a small purchase- she won't be learning or getting better or remembering what she did of any of it.

From what you wrote- wandering , not able to manage finance or meds , not remembering time lines - she sounds like she needs 24/7 oversight now - her moments of clarity are remnants — not a foundation -that you can depend on. It's safety first and plan around the worst not best moments.

I'm sorry it impacted your family at such young ages.

Gchilds · April 14

https://alzconnected.org/discussion/comment/240652#Comment_240652

Thank you for the tool. She lives with her husband, but he also works. Our concern is when she is home alone. We ask him to leave the keys on his person or in the closet so she won't access them at night.

nopost · April 14

Does her husband understand the disease process? Maybe you can point him to the newcomer section here.

She's going to need paid care 24/7 if not there already - did they see an elder law attorney - does he have the documents to manage their joint affairs? Or did she appoint her children? If your relationship with him is good maybe you can go to the lawyer with him . His world - especially financial got turned upside down and he may not realize/want to realize it.

Whether or not she locks the door before she goes off wandering in a confused state is the least of it— she needs to be safe 24/7. "Independence" is really not a realistic goal when person can no longer remember , have rational thoughts or practice self-preservation .

Maintaining independence during early stages

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