New here. I think my mom is stage 4... advice?

PaulaSS

Hi! This is my first day here.

I live three hours away from my mom and visit every 2-3 months I have two kids at home. My mom and I used to talk on FB messenger most days. Over the past few months, she talks less and less online.

I'm concerned that she may be in stage 4 already. She said she sometimes gets lost in her own small neighborhood where she has lived for 40 years. She said last week, she couldn't remember how to pump gas, and after trying at 4 different places, she called someone over, gave them her cards and asked if they would do it. (thankfully they were kind and helped her)

She gets very tired and mixes up night and day. She is eating less than usual. She is also diabetic. She is falling about once a month and takes 20-40 minutes to be able to get up.

I went this week to get her set up with a Life Alert and put a key on the door in one of those locks for paramedics. My phone was not working while I tried to call Life Alert, and my mom kept saying I had to charge the Life Alert device 30 hours before my call would go though... but I was calling from my phone. 

She is still able to pay her bills and carry on a conversation, although she does repeat things quite a bit.

Does this sound like stage 4?

I talked her into asking her doctor for a geriatric check while she was there earlier this week. She said she didn't think they would think there was a problem, but she would ask. They told her they think it is alzheimers and referred her to a specialist for a brain scan and testing?

My question is... what do I do now? My brother lives closer to her, about 40 minutes away, but it more willing to help financially than hands-on. He wants to get a POA, but I'm not sure how involved he will be. Should one of us have a POA at this point??

I am going to start sending meals she can just heat up or eat as is. I am going to try to visit every 2-3 weeks instead of waiting 2-3 months like I was doing.

Should I be trying to get home health care to check on her each day? What do they do?

What else can I do to help? What can I expect? What should I start planning?

I appreciate any advice you can give!

P.S. I want to change my profile picture of my mom for her privacy, but I don't see how to do that.

M1

Welcome to the forum, though sorry for the reason.  

First thoughts:  she's lucky the person at the gas station didn't run off with her credit cards, and second:  if she's that confused, she shouldn't be driving.  Which means, she may not be able to live on her own any more.  She sounds very, very vulnerable at this point.  Sad to say--and this is common--she's probably worse off than you think.  when the changes are so gradual, it's very easy to downplay the severity--we all tend to do that.  But you need to plan for the worst case scenario.  The not driving is a BIG deal, for everyone.  You don't want her to hurt herself or anyone else--which would cost you and her everything you have.  

One thing often suggested--can you or your brother actually go stay with her for a few days, so you get a sense of how she is actually functioning day to day?  Get a look at the bills, get a look in the fridge and the cabinets, and the bathroom, and her medication bottles.  Folks with dementia can be pretty good at covering up.  She  doesn't want change any more than you do, so you don't know unless you're there full time.

And yes, one of you very likely does need to have POA both for finances and health care.  But first, if she hasn't been diagnosed, she needs to have a careful examination to be sure there's nothing being missed that could cause dementia-like symptoms but that might be reversible.  Sounds like you need to make some major moves quickly.  there are a lot of experienced and helpful people here, I'm sure others will chime in.  Good luck. 

mommyandme (m&m)

Hi and welcome but sorry for the need to come here. This is a great place for support and suggestions.  

As far as changing the profile picture…go to the top of the Alzconnected where it shows that you’re  “logged in as”…then select the  “edit profile” link…then click on “story” and you should be able to edit the profile pic. 

When my mom was stage 4/5, we started non medical home care for 6 hours a day, 3 hours in the am and 3 in the afternoon/evening in her home that she lived for 60 years.   That was oversight for meds, meals and getting dressed for the day/night relatively, bathing, appts, light housekeeping etc…It worked well for quite awhile. My brother and I were both out of state.  She also had good neighbors that we kept up with.  The service would only do three hour minimums.  We then moved to two 4 hour shifts, installed inexpensive cameras for more supervision until 24/7 was a thing and eventually moved her to my state.  

Here’s a link to check out possible stages from different tests which may be helpful. https://www.dementiacarecentral.com/aboutdementia/facts/stages/

POAs should definitely be done now, possibly contact a Certified Elder Law Attorney (CELA) to get a financial and health care proxy established ASAP.  Sounds like your mom is still in  a place to agree to this, because one day in the not so distance future she may become suspicious of the process.  My brother and I shared POA, he took care of financial and I eventually was mom’s hands on primary caregiver. 

She’s fortunate to have you looking out for her.  Keep coming back with anything and everything. 

jfkoc

M1 has pretty much said it all but I will emphasize getting a DPOA in place, getting a diagnosis following protocal (you can google this), making an extended visit and  taking her car away..

Your mother is undoubtedly beyond stage four Alzeimer's if in fact that is what is causing her behavior. She is going to need 24/7 very soon if not already so please get Plan B in place.

This is a hard journey but please know that we are by your side to share information and to support you.

Anjuna

Hi! There is a lot of us out there.  My mom is 96 and was diagnosed last year with dementia. I am fortunate to live an hour away and my brother lives in town.  We use the Ring cameras and I must say they have paid for themselves a hundred times over.  My mother has a routine in the morning and I have learned it well. One day she did not do her routine and I called my brother. She had fallen and laid on the floor for quite some time.  She had an overnight stay in the hospital.  I would definitely get a Power of Attorney for both you and your brother. I hope this might help

Michael Ellenbogen

I totally agree with M1 except for the driving part but thats another story.

Emily 123

Hi Paula--yes, it sounds like your mom can't use her memory anymore to reliably store new information.  This becomes a tricky thing to manage remotely.  At this point your mother relies on her daily tasks and environment to move her stepwise through her day.  New routines might not be remembered.  Old routines may falter because she can't remember if she's done them or not. New technology or unfamiliar items won't be adopted. 

At this point you should flip your assumptions about how your mom can manage things.  Assume that she can't remember anything.  As suggested, a weekend visit will help you assess what structure she needs in place, but you should assume that, while she's telling you she's eating those meals or has made her referral appointment, you will want to follow through.  Go to the doctor's with her, handing them a note beforehand detailing what you see. 

Given her diabetes, and the fact that she's confused, it might be better in the interim to set up an aide to visit to ensure she's taking meds correctly, eating, etc. Since she's confusing day and night, and forgetting how to do basic tasks she's unsafe to drive--you can have her doctor write a note asking her to not drive. 

An aide can do lots of things like light house clean up, setting up meals, meds, walks, go shopping with a person, etc-ask when you interview.  

towhee

Hi Paula, yes, someone does need a Durable Power of Attorney for Finances, a POA for Healthcare and also both you and your brother and someone physically close to her need a HIPAA release form. This form does not allow you to make healthcare decisions but it does give the doctor the right to give information to the person holding it. Usually when you go to the doctors office there is a place on the forms you fill out where you can give the doctor permission to give test results to someone else, but you it might not be enough. You need to find out if you or your brother are listed on your mom's PCP forms.

The most important thing though is to get that appt with the specialist and you cannot depend on your mother doing that. Referrals can be slow, she could forget, or decide she doesn't want to go. You need to make sure she gets that appt. ASAP,  does not cancel the appt., take her there, and be present during at least part of the appt. One of the previous posters gave a great link, it not only defines the dementia stages but also the diagnosis process (usually bloodwork, brain scan and mental testing) and the information that you as a family member should be able to give the specialist.

As several have said, you are probably only seeing the tip of the iceberg.

Do not expect too much from the Life Alert, many people either forget to wear them or think they are not necessary. Cameras might be more helpful, and if you can get her to accept a home heath aid, that would be great, but that can sometimes be a battle and you need that POA so be careful. Make it about you, not her. If you do get a home health aid you need to remove financial temptation from the home, just in case, but carefully as you do not want your mom untrusting to begin with. A home health aid cannot give medications but they can remind her to take them and monitor the process. You can get a pharmacy to prefill meds in a sealed blister pack, it is a little more expensive but makes them easier to keep track of.

PaulaSS

I'm overwhelmed right now, but I did want to thank you for taking the time to give me advice.

I did another quick trip to my mom's this past weekend. I picked up a continuous blood monitor that was waiting at the pharmacy and set that up. While I was there I told her about getting a daily lunch delivery from a place near her that takes lunches to the elderly and checks on them. She also said someone a few hours a week to help at the house would be nice for some things - laundry, dishes, etc.

However, her sister came to visit the day after I left, and my mom has changed her mind in those things. She doesn't want to be seen as an "invalid" and "doesn't need help yet" and she doesn't want people "talking over her head and making decisions" like she had to do when her mom had alz.

I'm going to plan a longer trip as soon as I can and see what I can do to help. She is still waiting on the call from the neurologist. So I'm going to see what's going on with that so she can get a definitive diagnosis.

mommyandme (m&m)

Is her sister near by? Can she help look after your mom? Does she have POAs for your mom?   If not and she can only come occasionally, I think a discussion with sister is necessary.  And get those POAs done as soon as you can. 

I’m very sorry! 

SDianeL

my sister has dementia and when my husband was diagnosed 18 months ago, my brother-in-law said to get the DPOA right away, which I did.  I am so glad he told me to do that.  It covers everything.  Medical, financial etc.  Definitely get her to a Neuro Psychologist and Neurologist for screening.  I was shocked when the Neuro Psychologist told me that my husband should no longer be driving.  She said he has a spatial problem in understanding distance and speed. The only thing I noticed was that he was driving more slowly.  Scary!  Once you have the diagnosis and the DPOA (you have a primary and backup on most DPOA's) then you can make decisions and explain them better to your Mom.  If she lives alone, definitely get home health care to make sure she is taking her meds properly, showering and is eating properly. Also the cameras are a help.  The VA gave my husband an alert device because my husband can no longer use a phone.  I was worried that if something happened to me, he wouldn't know how to call for help. We already used it once when he had an episode possible mini stroke and it worked great. Her health care provider will help with many things but you will need a diagnosis and referral for the help.  In some states if she had Medicare and is low income she can also get Medicaid that has many more things to help. My son-in-law's Mom is 97, lives alone and she has both Medicare and Medicaid. She gets meals, transportation, health care aid every day, walkers, bath seats, etc.  The VA gave my husband a bath transfer seat and a hand held shower to help with baths.  One of the first things I noticed that caused me to get my husband evaluated was that he was not showering regularly. He would go over a week.  2 reasons I found out: 1. He would forget how long it had been and 2. taking a shower is overwhelming for someone with dementia. Too many steps in the process.  I got him to agree to Sun & Wed showers and I get everything set up for him.  Most of the time that works.  There is a book that was recommended to me. "The 36 Hour Day"  A Family Guide...  it's on Amazon in paperback.  It is terrifying and overwhelming. Please keep us posted.