Where is my mom at?

leroadrunner

Hi, so glad I have found this place. Already learning from reading posts.

Here's the story about my mother. We always had a pretty close relationship. I am the only sibling that always call her at least once a week. My brother and sister, both dont even bother with her anymore, some family fights that I am not going to get into. I am on good terms with everyone.

I am also the furthest physically, being in Toronto and her in Montreal (about a 6 hour drive).

My mother has been repetitive, no short term memory at all for about 5 years. She could repeat or ask same questions 50 times per hour.

In the early years, we would argue about it. Me telling her that she needs to see someone etc. This of course went nowhere. I tried several times to have adult discussions about it. She always says that she is just getting old, she doesnt have issues and doesnt need to see anyone. It was very frustrating for me, and instead of arguing, I just ignored it, and figured that as long as her house is clean and she doesnt put the house on fire, I will just wait it out. My mother lives alone is a nice apartment, and she loves it that way.

Now it has progressed. Being away, on those weekly video calls, it is difficult to tell about her progress. I see she has notes, and is using them to refer to things. Also more and more I notice she invents simple stories about her week, and 5 minutes later, the story is different and contradicts the previous version. No big deal, but that's something new.

And lately, in the last year, her few friends have called me concerned about her "dementia", their words not mine. 

I do go visit her (I do have my own life, busy work and kids) a few times a year, and she comes as well once a year usually. Her last summer visit, was the first time, that I was really saddened by what I was witnessing. She would be constantly be losing something or the other. And would take 20-30 minutes each time to find what she was looking for. Could be sunglasses, purse or other.

Now a few things happened lately. About 2 months ago, suddenly I received a call from the local funeral home in Montreal, they are family friends. The owner called me that my mother was mad at them and totally lost. What I understood is that she has a payment plan with them, and she had told them to call her every 3 months to remind her to make a payment. But they told me they will not call her anymore, as my mother was mad that they called her for payments etc. The funeral home owner, told they dont require payments, and will just send me the info and no longer call her. Which I said is fine. I did call my mother and her story was that shed never ask them to call, etc. Anyways, its solved, they will not call her anymore and I have the information needed.

Now, about 3 weeks ago, a friend of my mother called me on how she tried to help my mother as she had locked herself out of her online banking. Apparently she was on a call with the bank for 2 hours and my mother could not understand or execute simple instructions. Her friend finally did it over the phone, but a simple process of resetting a password took her almost 3 hours.

Her friend btw, she says she no longer wants to go to dinners with my mother. They used to go monthly together, as the conversations are so repetitive and draining for her. I can understand as when I go visit, 12 hours is difficult to get through, it is very tiring.

This is where I am getting pretty concerned, and think I probably need to look at power of attorney so that I take care of her bills and such for her. Am I there yet?

I did reach out to an Alzheimer society close to her, 2 weeks ago. They were helpful, they were going to assign someone to help me with her, but I have not heard back, I will check back soon with them.

Sorry this was long, I think its helped me lay out my thoughts.

So how far along is she? I read and re-read about Alzheimer stages on websites, but it is vague. Sometimes she is mild, sometimes middle, and sometimes appear in later stages.

What are your thoughts? What should I do next? What do I need to prepare? How fast will it progress?

Thank you

M1

Welcome to the forum, it is a good source of knowledge.

You are more than there, you need to act quickly before adult protective services gets called in.  She is at risk for safety and financial exploitation and in all likelihood should not be living alone, that it what her neighbors and friends are trying to tell you.   You should probably deem this a hair on fire situation, do not wait.  

When we family members experience these gradual changes, it is a ntural instinct to want to say, "it's not that bad," or "she's okay so far."  The opposite is likely true.  

Good luck, but sorry you are facing this.

Quilting brings calm

Regarding her stage - the standard is to assume that her worst day or most progressive symptom is where she is at.  Because that’s the days she needs the most care. 

I agree with M1- you are at the assisted living  stage.  When friends take it upon themselves to contact family that live  elsewhere - they are deeply concerned.  Think about it - would  you call a neighbor or friends’ children about them for anything less than a possible severe injury situation?   She should not be cooking because she could forget to turn the stove off.  

I don’t know anything about Canadian estate or medical or nursing home finances.  So I can’t help much there other than to tell you to try to get a power of attorney as soon as possible.  If she will sign it and if she is capable of signing it.  She may balk just like  seeing a doctor.   It’s much too late to be trying to have ‘adult discussions’ with her.  She won’t understand or remember- the 50 questions you mention. 

You are not the only child that will be getting no help from their siblings.  It happens often.  If they are estranged from her, maybe they will at least not interfere with you doing what is needed. 

I advise you to try to get her to move to a group living environment close to you.   Be prepared that more of your time will be needed than a once a week video call.  That’s why I suggest an assisted living environment close to you. Otherwise this will take over your life. 

mommyandme (m&m)

You’re definitely there! POAs and caregivers in the home are needed now.  Go there, get some things lined up, vet some caregivers and maybe set up some inexpensive cameras.  If you’re ready and a facility is the way to go, get on that.  POAs may need to be activated to place her.  

My brother and I did long distance caregiving for my mom.  We started a service three hours in the am and three in the evening.  After we installed the cameras (we were already doing two 4 hour shifts) my brother and I could supervise when she was alone.  We called on a very dear neighbor to help when I couldn’t find her with the cameras, she had fallen in the bathroom (didn’t put cameras there).   In fact, like you, we had three invaluable neighbors that called us with their concerns and could help sometimes.  Not long after, 24/7 caregiving was required.  

I know the sudden realization that her living situation has changed can be overwhelming…especially being long distance…been there done that.  I’m sorry for this difficult journey for you and yours. 

Vitruvius

I should stay out of this but I just can't anymore. The number of posts by adult children wondering whether their parent with advancing dementia can live alone astounds me. I understand how difficult it is to come to the point that YOU must be the one to totally reframe your parent's life, but it must be done.

This rant is not directed at you specifically, I'm just trying to make a point. I am a spouse who has seen my DW decline to now Stage 7 of dementia. 

Those of us who have lived every day with a PWD and witnessed their decline in early through mid stages know that some or even most of the time they can perform relatively normally. But they can also behave irrationally and irresponsibly to their detriment at any time. All of us can tell stories of us intervening just before our LO did something that could have gone badly. Or just did things like make sure they really took their medications which they otherwise would think they did but didn't. 

I'm sorry but I think it's cruel to allow someone to try to continue taking care of themselves alone when they've gotten to the point they really can't.  It's not a kindness to allow them their independence when they are in great need of more care than they can provide themselves.  This is despite the PWD's insistence that independence is what they most want. Sorry, they are cognitively impaired and don't understand their own shortcomings. 

For any adult child who is even remotely concerned about their parent(s), please start the process with a POA, even if your LO(s) assure you it isn't necessary. Start thinking about a Plan A and a Plan B for the day when care interventions become advisable. Steel yourself for doing what it takes to keep them safe even though this will undoubtedly cause great disruptions to both of your lives.

My apologies for being blunt but all you adult children need to hear this. 

Caro_Lynne

Vitruius, I agree with your post. Not shaming anyone, just keeping it real xo

Emily 123

She should have a medical assessment ASAP-let the provider know ahead of time about the progression of behaviors.  You don't have to tell her that's what the visit is about-tell her a fiblet, like it's some new requirement for everyone over 65 or some such.  If your mother has Alzheimer's, you can look at the DBAT assessment tool at the botom of the page at this link to see what fits.  

https://www.tamcummings.com/tools

If you're noticing that her short term memory is gone she isn't safe to be by herself.  She could be over- or undertaking her meds, forgetting to eat, leaving the stove on, or she could be at risk for wandering. Chances are that bills aren't being paid, and she needs someone to manage her finances.   

If you haven't read this yet, it is an excellent first step: https://www.alzconnected.org/uploadedFiles/understanding-the-dementia-experience.pdf

leroadrunner

Thank you all. A little overwhelmed.

At first when seeing the posts back, I actually thought "is there a bias? as this is actually an AZ support forum, is she that bad?" But I think you are all right. She is worse obviously that I can see. As M1 said, she is probably opposite to my instinct let on. So, well noted. 

"vitruvius", I appreciate shaking me to make me realize the importance of taking action. I'll talk about that in a minute.

I have never dealt with anyone with AZ, not an excuse, just my reality. For me it is something I read about and discussed with a friend as his mother went through something similar all the way to complete dementia until she passed away. I was relying on him and his pointers on when to take action. For example, my mother is a neat freak, always has been. So one of the markers he had warned me about was if the cleanliness would drop, and to watch for expired food.

Last time we were there, last fall, she did serve some cheese hard as a rock, which we told her and promptly threw away. We (wife and I) reviewed the items in the fridge, without her noticing to see if any other things were old. We did not find any, and the place was spotless as usual. So I probably let my guard down.

On actions: 

1) As "Quilting brings calm" mentions, the worst day is really where she is at. So the episode of locking herself out of banking account is very troublesome and needs to be acted on ASAP. I am following up on POA, contacting people I know to find me an attorney in Quebec to draw this up. I think I can probably convince her to sign it, as her best friend has already told her that she should consider it.

2) She treasures her home, and will never want to leave. As she is a neat freak, she always said she cant bear to live with others or in a group home. She is 79 and does not like old people as she finds most of them gross and dirty she says. lol. So, on that front, I will work on getting caregivers, which first mean get her diagnosed. I have talked to the AZ Society local to where she is and we will line this up asap. Btw "m&m" I like the cameras ideas too, not sure how I will get that passed her, but I'm thinking about it.

3) And "Emily 123" thank you for that pdf, I have read it, this is the first time that I read something that really makes me understand what AZ is and what it can do. I went to the library to get the book "Somebody I used to know"

I'm a little bit in a panic, but I think I have a plan.

So thank you all for your advises, if you have more keep them coming. Thanks again

SusanB-dil

Hi leroadrunner - welcome to 'here', but sorry for the reason.

I agree with the other posts. They are not harsh, but rather, take as a 'wake up call' to get moving.  Often said that 'if you have to ask, you already know'.  Agree - she should not be left alone. At the very least, get eyes on her and the stove.  Get the POA ASAP and check on regular bills - check for past-due. Not sure how medical alerts and accesses work for Canada, but that is also important.

Hang in there - it is a bumpy ride. lots of us in this mess. Glad she has you watching out for her.

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Quilting brings calm

leroadrunner 

Coming back to add this -  it’s a shock at the beginning of this one way journey.  especially for offspring who don’t see their parents every day.  My parents had moved out of state 3 years before the real crisis landed. So, I was like you - clueless that we had reached this part of life.  I hadn’t gotten calls from friends, just some clues about checking account confusion, what appeared to be some  old age forgetfulness, and a sudden move to an independent living apartment because ‘things were  getting to be too much’.   But a medical crisis a few weeks later  brought it to the stage of emergency move back to our state. a hospital  stay, rehab and assisted living.   

It was a real eye opener and not something I want  to repeat. We all think you are on the brink of that type of situation. That’s why we are saying what we are saying.  It’s a good group here- but we all know we have to be honest with each other and not sugar coat things.  That’s the real support that we all need 

leroadrunner

Thank you all.

I feel like I am thrown in the deep of of the pool, but I am heeding your warnings and moving things forward as fast as I can before a real crisis does happen.

You are right, as this point I would feel better if she was no longer by herself. I don't know how yet I will do this, but that is my goal. I am hoping the diagnosis will help support me in that end.

I am also arming myself, learning about the disease and caregiving. 

Are there podcast that you have found useful to prepare myself as a remote caregiver?

Anything other resources that are helpful?

Thanks

SusanB-dil

Couple things that I know have helped me personally - this forum!

Also - there is a book, good for a lot of reference: 'The 36-hour Day' by N Mace and P Rabins

And just understanding the stages - Tam Cummings has much info on that and other items. She has videos on YouTube.  Some medical use 3-stage of early-middle-late stage, but most of us here on the board go by the "7" stages. Personally, I think the 7-stage guide gives a better overview of issues.

A link to an interesting read for understanding: https://www.alzconnected.org/uploadedFiles/understanding-the-dementia-experience.pdf

Emily 123

Hi,

Here's some videos I found helpful:

Teepa Snow has excellent You tube videos, so will start with hers, and have added some others.

Getting a diagnosis: https://www.youtube.com/watch?v=61dQDIuueyQ

https://www.youtube.com/watch?v=u5QMeQpkPhA

https://www.youtube.com/watch?v=0BlZF_4EKp4

https://www.youtube.com/playlist?list=PL2E2lPBsUeBjA1Utglo8q6yANAijEf8cX

Moderate Alzheimer's changes:  https://www.youtube.com/watch?v=6cZTgG6kDjs

5 Alzheimer's losses: https://www.youtube.com/watch?v=awBm4S9NwJ0

Common issues:  https://www.youtube.com/watch?v=FjGEexyagRk

Stage 3 (excellent series on the stages)  https://www.youtube.com/watch?v=TIkTO4d8YyI

Stage 4: https://www.youtube.com/watch?v=coiZbpyvTNg

How to talk to someone with dementia: https://www.youtube.com/watch?v=ilickabmjww

leroadrunner

Thank you for those resources. I've watched quite a few.

As far as my mother, its a tricky and complicated process. He family Dr retired about 2 years ago. About 3 years ago I did ask her to go and get tested. She of course never did, and everytime we talked about it, it was painful. I realize now that I should have been more forceful and just take her.

Anyways, so, now I need to find another Dr and bring her there. This is Canada, altho everything is free in healthcare, getting a Dr assigned might take awhile. Talking to a neurologist who is ready to do test and scans, but he first needs a Dr reference. A bit of a catch-22, the shortcut would be to bring her to the emergency (his suggestion).

On the plus side, I have a contact at Alzheimer Society that is being very helpful and has requested a social worker to be assigned to the case. We will have that soon apparently (couple of weeks?).

And tonight I have a discussion with my mother re POA. Her friend thinks she may be receptive to it. Wish me luck.

Apologies, probably not relevant to many, but this is where I am with this.

Thanks for the support and allowing me to vent. 

Emily 123

You're doing well!  Good luck!  Recalibrating to your loved ones new reality and the changes to your relationship with them is difficult, but you've taken some solid steps.

prov1kenobi

you need to read the paper available on this site

Understanding the Dementia Experience

it is invaluable