Tips and best practices-new to group

RobinFR

Hello all

I am new to this group but have so far have really appreciated reading about others experiences

My mother was just diagnosed with ALZ. Mid stage   She lives alone but I live nearby.  I took the car keys away so she is dependent on me for transportation to the grocery store and appointments but has excellent hygiene, dresses appropriately, cleans her home and has limited access to her checking account.  I am just starting this journey these last two months when we went through all the assessments.  It’s overwhelming to think through, but I am simplifying things as much as possible for the now and then am trying to plan for the longer term.  

So far I have set up medminder (pill dispenser ) which is a great system for us.  It has prevented over dosage and missing doses.  I update her on doctors appointments etc right before I take her to eliminate anxiety.  I have a camera set up in her kitchen so I can check in while I am at my home.  My next steps are finding resources to accompany her to stores (for socialization as well as giving me a break) and then start to look at AL / MC to get a sense of what is out there, costs and options.  I would love ideas on how you find and evaluate aids (you hear scary stories), any other best practices for supporting someone with ALZ.   Another question is about elder attorneys- when do you need one?    Thank you for any thoughts

M1

Hi Robin, welcome to the forum.  Your question about the elder law attorney is the easiest to answer:  it's never too soon.  If you don't yet have durable and healthcare power of attorney, get it now while she's still able to agree and sign, and a good time to make or update her will also if needed.  If you think she will need Medicaid eligibility in the future in order to pay for placement, that's another reason to go now (requires careful asset management and a 5-year lookback at finances).

You may want to familiarize yourself with the stages of dementia (google Tam Cummings stages and you'll find a good description of the 7-stage model).  Great that you've already dealt with the driving issue.

I have a cautionary tale about pill minders, however; I used to set one up for my partner (now stage 5) and let her take it from there, but when she couldn't remember the day of the week, much less morning or night, it didn't prevent mis-dosing.  She would either skip or take things twice, and there were some dangerous possibilities there.  We tried a calendar for a while but then that didn't help either, and I had to just take it away from her and start supervising the meds completely.  Now, if I don't physically see her put it in her mouth, there are still occasional mixups (this week she took her evening pills from me but then put them down somewhere and didn't take them).  So just be aware that this will not be a permanent solution.  What works for now is good, but plan ahead.

Good luck, this is not an easy road, but this forum helps.

RobinFR

Thank you M1.   Great recommendations   I will follow up on that and yes good reminder about medminder working for now  For anyone needing a system currently this one works well.  I get notified if she does not take out pills  It first blinks and then it beeps for her. Then it will call her 30 min later and text me   Now that does not ensure she swallows pills but for now she works w routine and knows she has pills she likes it.  She has routine and appreciates it.  Right next to it I put a clock which has day of week time, date and time of dat ( morning afternoon and evening ).  Once again for short term trying to simplify.  It helps for now   Thank you again. It feels so much better having people who know the ropes

Sjodry

Hi Robin,

Welcome to the group. When my mom was able, we used a color-coded daily pill box. I created a color-coded notepad with color appropriate boxes (which also included A.M. & P.M.) I typically was over every day and gave her am pills and would set out her pm pills. This worked well for awhile. She did eventually get confused and I used an Alexa. We would have a video chat, she could show me the pills to ensure she had the right ones.

I also created a notepad called Fran’s Day..which had a place for the date and day of the week. I added any appointments she had, where and what time. Again, it was great…until it wasn’t.

We also had the great clock you mentioned. I loved that until mom washed it a couple of months ago.

As far as aides go..we were in a position during Covid in which I did not want to place her into a nursing facility. For a period of months, we had round-the-clock care with Comfort Keepers in her apartment. They would tell me where their caregivers were hired the most (letting me know there were issues at those places). I had one of those caregivers tell me that two of her friends worked in jobs making recommendations/placing people in memory care. Both of her friends recommended the same facility that I ultimately placed my mom in. If this was the best place..it is scary to consider what the others must be like.  This is a very difficult choice to have to make these days, in my opinion. There are traditionally challenges in finding good caregivers in this industry anyway, and Covid has surely exacerbated those shortages.

You are smart to do your research and gather as much information as possible. This site will be very helpful to you in these efforts. It is great that you will be close to her in whatever placement you find. If I had not had the ability to be with her almost daily (and I preface this by saying at my mom’s specific facility), I am sure she would have already passed.

Best of luck to you!

Take care.

Sandy

harshedbuzz

Hi Robin.

It is wise of you to be thinking ahead. With dementia, it's best to have a Plan B ready to execute immediately. To that end, you will want to tour multiple MCFs to get a sense of what is available in your area. It makes sense, as well, to have picked out a couple of SNFs in the event she has a qualifying hospitalization and needs rehab; ahead of discharge, they'll want to know your top 3 choices so know these in advance is critical. 

My guess is, your mom might be OK in a hospitality model AL right now, but will need a MCF should you decide she's no longer safe at home. The old adage is that by the family is ready to consider AL that cruise has already sailed. 

Good for you for taking over the checkbook. We found it simplest to put as much of my parents' monthly bills on automatic payment to her credit card/checking account. Depending on mom's personality and anxiety levels, it might make sense to have her mail forwarded to you. 

Finding health aide companions can be done through an agency which does basic vetting/payroll (a little over $30/hr here), through Care.com where you vet and manage payroll (cheaper, generally about $20/hr and some say better people) or through word of mouth by asking at church, the hair salon, etc. We only did agency aides and some of them were a poor fit; the best aides are popular and not always available for the times you want unless you can commit to a full schedule that works for them. A few that didn't work out were recent immigrants who were lovely but whose accents were beyond what either parents could understand. Another made off with a bunch of mom's jewelry and left some other client's checkbook (which she was not authorized to have) at the house. Another was big into recreational weed according to FB, but she was kind and great with dad so it wasn't a deal breaker for me but might be for others. 

Keep an eye on the pills. Do you actually see her take them? Dad lived with mom as caregiver and sometimes he'd cheek them or even just stuff them under the sofa cushions or in the trash. 

It's best to sit down with a CELA as soon as you can get an appointment.

HB