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should I be happy or not? vascular dementia
smbren
Posted: Monday, December 3, 2018 6:25 PM
Joined: 10/11/2018
Posts: 43


I had told myself I'd be happier when we had a diagnosis.  I don't know, guess to me it meant some confirmation of what we've thought/known was going on.  But now that it is confirmed, it also is just that, a diagnosis... 

But I am glad we have a diagnosis so at least we can learn more about specifically what my mother may have for challenges.  

So now that we have this diagnosis of vascular dementia, this is one of the first resources I'm hitting up as it's been the most helpful to me since I've been looking into alzheimer's and dementia issues.  So if you have any specific information that may be helpful, I will appreciate any insights, links to resources, even experiences if you wish to share.

An update since my last posts.  My mother also has that condition (I can't remember the term I learned here over a month ago) where it's not that she is in denial, but she doesn't realize that there is a problem at all.  This has been a particular problem as we (primarily my father and myself) can not mention anything about the doctor without her getting defensive.  This is still occurring.  So we really can't get good info from her, and with the memory we are not getting reliable info as well.  She still will not let us in with her to see the doctor. 

The doctor is a personal friend of mine and this mornings visit with him and my father made it clear that the results of the MRI she had did have results that led to the diagnosis.  So while we may not be able to talk directly to her or go in with her to the doctor's office, we'll have to work a little harder to stay informed for now.  Not optimal.  The plan is to try to get her in to see a neuroligist next, but I don't think the doctor is going to convince her to do that.  
 

Behavioral observations we've noticed more is easily agitated or upset over little things, could even be when you have just agreed with her on something.  Short term things from minutes to hours to days remain the constant struggle. 

I recently saw a post on Facebook, isn't that where all wisdom comes from these days?  Forgive me, I don't have it as posted, but here is the gist...
A father asked his son a question and the son answered.  The same question was repeated 4 or 5 times.  Then the son said rather perturbed 'why do you keep asking?  i told you already.  you know because i told you.'  the father walked away and came back with his diary and opened to a page and let his son read.  the son asked his father the same question 23 times and his father answered with joy 23 times.  
I only saw this a few days ago, but had changed my approached quite some time ago when we knew something was going on.  I stopped saying, 'I told you already' ' Don't you remember' and things like that and just answered again. 
I'm no saint, and the endless repeated same question does get on my nerves at times, but mostly I just answer again. Or sometimes I do what she taught me 'if you don't have anything nice to say, don't say anything' and I just don't answer sometimes and the question just vanishes.  But I try to do that instead of snap back at her as it's not her fault and I know that.  And I know I've written enough as I have tears in my eyes again. 

 
 


Mimi S.
Posted: Monday, December 3, 2018 6:44 PM
Joined: 11/29/2011
Posts: 6643


With Vascular I would hope your mom has a good cardiologist because of the stroke issues.

If she acknowledges that she may have a 'slight memory issue' perhaps doc can ask that you be at appointments because of that.

 
Does she have a DPOA?  Do consult a Certified Elder Law Attorney to get her financial and medical papers in order.  Sometimes, it might work to tell her that you're having yours done and why doesn't she take care of hers at the same time?  

 

From your library ask for any book by Naomi Feil with the word Validation in the title. The on-line version is not adequate. The book is not an easy read, but worth the time for al involved.


CessnaDM
Posted: Monday, December 3, 2018 7:18 PM
Joined: 5/30/2016
Posts: 554


My FIL had mixed dementia (Alzheimers and Vascular). The vascular dementia rendered him the most issues. Unfortunately, he passed last Tuesday. He had a history of TIAs (trans ischemic attacks) On November 3, he had one, but they were able to send him home. That night, he had a stroke. That with other complications, caused his death.. Vascular dementia can cause problems walking, vision, headaches and pre-strokes. With Alzheimers, the progression is on a sliding scale. With vascular dementia, it is like declining steps. With the stroke issues, it can be very serious. Sending prayers to you and your family.
smbren
Posted: Monday, December 3, 2018 7:21 PM
Joined: 10/11/2018
Posts: 43


Hi Mimi,

Thanks for the input.  We do have DPOA in place as well as living will.  Financials are in partial shape, meaning my dad is in the picture and in good health.  While I assist him on planning and such, I haven't tried to suggest to be added to their accounts.  I have been thinking of bringing that topic up to my father as all financial items except for her SSA, annuities and pensions are in each persons name.    But I know of all the accounts and have online access to them (technically, my dad has access).

While the DPOA is in place and I know you can go through the legal process if needed, we are not willing to go through that to have her declared unable to care for herself.  It is something I fear we may need to do at some point if she doesn't feel she can trust us to help her.  I feel at this point, it would be nice at times to bring in someone just to help with things around the house and such, but if we push the issue she will be very defensive.  And with any legal win, sure you can have that say so, but the situation will become very difficult at that point with the way she is today.  So we are doing that dance at that moment, and taking it slow and cautiously with her.  Just getting to the diagnosis has been many months.

I have considered the Elder Law Attorney.  I have been pondering this question, Should I go with or without my father?  Perhaps you have some thoughts on that?  

 Almost forgot on the stroke comment.  We actually feared she had a stroke a about 5 months or so ago.  But all indications are that it was not a stroke.  But I hear your concern on that and that was one of the first things that registered as I started to read up more now that we have something specific to focus on. 

Thank you again! 


i2i
Posted: Monday, December 3, 2018 7:33 PM
Joined: 8/12/2017
Posts: 137


A quick word, certainly not the sum total of what you are needing this day dear smbren.  You have this, you get it.  Just as you said, what often works for me, rather than "Don't you remember?" is to relay to the person what seems important to remind them of, and then say, "Isn't that right?"
smbren
Posted: Monday, December 3, 2018 7:34 PM
Joined: 10/11/2018
Posts: 43


Hi CessnaDM,

Sorry for your loss.  Thoughts and prayers to you and your family.

Thank you for the information.  One thing you mentioned was walking.  We have definately noticed she is not always good on her feet, but it usually is around stairs or something more than just walking.  Headaches, I can believe that from what I read.  She has arthritis and a lot of the testing she has had has gone under the guise of tests for that. 

One thing the doctor wants to do is get her on blood thinners which should help.  But we know that we just can't say 'hey, go make an appointment...'  So there will be a little lag, but we will get her there.    And I hear you on the stroke concerns.  After her ER visit and hospital stay about 5 months ago, that's been a concern. 

Mimi---
Also saw the book you mentioned.  I will be checking that out too! Thanks 


smbren
Posted: Monday, December 3, 2018 7:45 PM
Joined: 10/11/2018
Posts: 43


i2i wrote:
A quick word, certainly not the sum total of what you are needing this day dear smbren.  You have this, you get it.  Just as you said, what often works for me, rather than "Don't you remember?" is to relay to the person what seems important to remind them of, and then say, "Isn't that right?"

Thanks.  I've also simplified my answers.  My dad has been following my lead too.  I sometimes feel rude giving very short and abrupt answers, but with out a detailed answer, she seems much better.  And I don't say it in a rude way, it just seems it to me, like some always trying to answer questions with one word answers.

I've also reluctantly started to use text messages with her.  She seems to want to use that more.  Not sure why, as I've got chats with her asking the same thing a few times in a row after I answer each time.  At first I thought maybe the text was better for her, but I'm not seeing it be any easier for her.



gubblebumm
Posted: Monday, December 3, 2018 8:10 PM
Joined: 7/12/2017
Posts: 851


My mom has mixed dementia, VD and ALZ, its so fun...anyway, she prob likes texts so she can look back at them, we useda white board for notes (my mom lives in our in-law) and short and sweet answers are best.  I repeat myself constantly, its exhausting, but you get used to it.  I look at it this way, ALZ is slow dimming of bulbs, Vascualr is like the bulbs in the brain pop...We got our diagnosis through MRI and congnitive

People see her and think, oh she's fine, she smiled at me! She knows me!  Nah, she just still has some social skills, its rough but at least my mom is pleasant and if I if get frustrated two minutes later eh, its over.  We spent three hours at zoo today with her great granddaughter, she enjoyed it, but doesn't know what we did all day


smbren
Posted: Monday, December 3, 2018 8:24 PM
Joined: 10/11/2018
Posts: 43


gubblebumm wrote:

My mom has mixed dementia, VD and ALZ, its so fun...anyway, she prob likes texts so she can look back at them, we useda white board for notes (my mom lives in our in-law) and short and sweet answers are best.  I repeat myself constantly, its exhausting, but you get used to it.  I look at it this way, ALZ is slow dimming of bulbs, Vascualr is like the bulbs in the brain pop...We got our diagnosis through MRI and congnitive

People see her and think, oh she's fine, she smiled at me! She knows me!  Nah, she just still has some social skills, its rough but at least my mom is pleasant and if I if get frustrated two minutes later eh, its over.  We spent three hours at zoo today with her great granddaughter, she enjoyed it, but doesn't know what we did all day


That's what I thought at first on the texts.  And then it seemed like that wasn't happening any more as it would go Q A Q A Q A with nothing between the same question and answer.  At first I was answering by wording it differently as I thought didn't know what I meant.  but it didn't take long to see that it was helping her even though she seemed to prefer using text. 

Yeah! Zoo day!  Yeah, I'm trying to do things, whatever and whenever.  She's happy in the moment, and like you said at the end of the day doesn't remember what she did.  

It 's a coincidence you mention social skills as I just asked my dad about the circle of friends and if anyone has said anything to him about her.  As I've seen the puzzled look on some before.    He told me no, but he told me he told his close friend who is married to her best friend.  So I'm fairly sure her circle of immediate friends are aware through my dad telling his friend. 

Honestly, it's harder dealing with my sister who sets my mom off more and doesn't take any of this into consideration.  She doesn't need my sister's drama. 


MN Chickadee
Posted: Monday, December 3, 2018 8:38 PM
Joined: 9/7/2014
Posts: 581


I don't have any advice but wanted you to know that last paragraph stuck with me. I like that train of thought.  

It's weird. Sometimes I get it right and sometimes not. And sometimes I think I'm more patient with my mom than I am with my 4 year old because the well is dry, and then I have a whole different reason to feel guilty. Dementia never ceases in it's far reaching abilities to mess with minds. 


jfkoc
Posted: Monday, December 3, 2018 8:40 PM
Joined: 12/4/2011
Posts: 15794


Attorney? I would absolutely go with and have everybody get a DPOA done. Let your father know that you will leave the room at any time he wishes to speak privately.

Here are some sites others have posted;

https://memory.ucsf.edu/vascular-dementia

www.mayoclinic.org/diseases-conditions/vascular-dementia/diagnosis-treatment/drc-20378798

http://strokeconnection.strokeassociation.org/Summer-2016/Understanding-Vascular-Dementia/


Relocated Daughter
Posted: Tuesday, December 4, 2018 12:04 AM
Joined: 7/21/2017
Posts: 105


Smbren,  I understand your mixed feelings now that you finally have a diagnosis. I felt the same way when my mom was diagnosed with mid-stage vascular dementia 2 years ago. Like your mom, she has anosognosia, so I'm unable to discuss anything related to the disease with her. She heard the doctor's diagnosis and recommendation not to drive back then, but it didn't "stick" with her. 

Since it was dangerous for her to live alone in her home of 25+ years, I ended up moving in with her. It alleviated a lot of issues such as driving because I was always available to drive for her. Same with cooking, giving her meds, etc. I'm not recommending this for everyone but it worked for me...until she no longer recognized her own home and would be agitated everyday, asking me to take her to the airport so she could go home.  

At the time, it was difficult to find a lot of info on vascular dementia. One thing that was different for her is that she hadn't had any major strokes so the changes didn't happen in a downward step-like fashion. Trouble with balance and walking happened very soon after diagnosis. She had numerous falls. Thank God, she never broke a bone.

I took as many classes as possible. The best foundation was through "Savvy Caregiver". My husband and I took it together and it was a lifesaver. Through techniques I learned in the class, I actually weaned my mom off cigarettes despite a 50+ year habit. (She would smoke in bed while watching TV before falling asleep for the night. Yikes!) Another good set of classes were "Positive Approach to Care" which was developed by Teepa Snow. 

My mom now lives in a care home that uses the "Positive Approach to Care" method. The staff are wonderfully supportive of each of the residents. It really helps decrease their agitation level and allows them to "be in the moment".  I visit her every other day...and she always enjoys our time together but each time ends it with, "I'm going home tomorrow." And I've learned to agree and say, "Yup, they'll call me when you're ready!"

 

  


smbren
Posted: Tuesday, December 4, 2018 6:39 AM
Joined: 10/11/2018
Posts: 43


MN Chickadee wrote:

I don't have any advice but wanted you to know that last paragraph stuck with me. I like that train of thought.  

It's weird. Sometimes I get it right and sometimes not. And sometimes I think I'm more patient with my mom than I am with my 4 year old because the well is dry, and then I have a whole different reason to feel guilty. Dementia never ceases in it's far reaching abilities to mess with minds. 

I don't get it right all the time.  I do the best I can.  Even with raising a kid, you don't get it right all the time.  My wife and I did not have kids, so I don't have the full raising experience only with nephews and nieces and such.  But most times, just as you said, I'm super patient with her.  Sometimes it's hard to hide my frustration with the disease.  I know I didn't retell it as well as I saw it on facebook, but I tried to relay the point at least.  I can't share posts like that with my friends on facebook for fear that my mother will think I'm saying she has a problem or something.  So I avoid any supportive messages on that topic, but at least I can come here with them

Hang in there.  Remember you don't need to be perfect.  And you don't need to feel guilty.  I feel more the feeling of loss as I feel I'm losing her at times.   


smbren
Posted: Tuesday, December 4, 2018 6:50 AM
Joined: 10/11/2018
Posts: 43


jfkoc wrote:

Attorney? I would absolutely go with and have everybody get a DPOA done. Let your father know that you will leave the room at any time he wishes to speak privately.

Here are some sites others have posted;

https://memory.ucsf.edu/vascular-dementia

www.mayoclinic.org/diseases-conditions/vascular-dementia/diagnosis-treatment/drc-20378798

http://strokeconnection.strokeassociation.org/Summer-2016/Understanding-Vascular-Dementia/

Thank you for the additional resources.  I will be checking them out.

DPOA is done.  But I think there are still things to be sure are set.  Think this will be part of the new year.  New year resolution to get something set and done. 

Good thing is my father has never been shy to tell my about the will.  I was even the trustee for a trust that was set up which is no longer a requirement of the will.  He will tell us that he's already picked out the plots and paid for them.  There are policies to cover the funeral expenses, etc, etc.  Most of the things kids don't want to hear about.  
I think the big thing for me at this point is to get on the financial accounts.  I am aware of all financial matters and help with the financial planning, any major expenditure, etc.  But I am technically not on the accounts and use his ID to login if I do anything.  But if something were to happen to him, it would be problematic to assist my mother with all of it, especially with her feeling defensive at times.  I can just imagine her saying you just want the money, yet I can care less if I saw a penny and every penny went in supporting her.  So I think I want to try to make sure we have these things taken care of.  

If something happened to my father, I also fear my mother would worsen drastically.  I say that as my mother has shown signs for years.  But her symptons drastically got worse after my brother passed away last year.  And I've learned a loss like that can impact dementia, but I'm not sure if it can have an impact on VD specifically now that we have a diagnosis. 



smbren
Posted: Tuesday, December 4, 2018 7:21 AM
Joined: 10/11/2018
Posts: 43


Relocated Daughter wrote:

Smbren,  I understand your mixed feelings now that you finally have a diagnosis. I felt the same way when my mom was diagnosed with mid-stage vascular dementia 2 years ago. Like your mom, she has anosognosia, so I'm unable to discuss anything related to the disease with her. She heard the doctor's diagnosis and recommendation not to drive back then, but it didn't "stick" with her. 

Since it was dangerous for her to live alone in her home of 25+ years, I ended up moving in with her. It alleviated a lot of issues such as driving because I was always available to drive for her. Same with cooking, giving her meds, etc. I'm not recommending this for everyone but it worked for me...until she no longer recognized her own home and would be agitated everyday, asking me to take her to the airport so she could go home.

 

  


Thank you!  My brain just won't remember the term anosognosia.  I put my own block on that one I guess.

My parents are together and my Dad is finding things daily to watch for.  Like the ice cream in the fridge the other night instead of the freezer.  But I know it's getting draining on him at the same time and he doesn't get a 'break' from it.  I hate calling it a break, but I think all of you here know what I mean.  She still drives, very rarely though.  Dad drives her almost every where.  I think there are only two places she goes on her own.  So it's almost auto pilot, a monthly lunch with her 2 best friends and to get her nails down.  The locations don't change, otherwise I would be quite concerned as when she is out of the normal, the confusion seems to really set in.  But she let me go to lunch last time and take her on the 'girls lunch' and son.  Her two besties are like my other moms. 

My wife and I are talking about getting a larger house with 2 Master suites at opposite ends of the house or different floors (with theirs on the main floor).  I want us to each have our own space (bedroom, living area, bathroom), but don't want to do a in-law apartment style with the separate entrance, kitchen, dining room, etc.  I think as her needs change, we want to be sure we have a place that works for us.  That we can bring in help as needed as well. 

Like you, we are concerned on the falling.  Not from just level ground walking, but if stairs are involved or if we are somewhere with uneven ground, etc.  

Are those classes you mentioned online?  If you could point me in the direction that would be great!

My grandmother had a form of dementia or alzheimer's when i was younger.  And I remember the challenges.  And she was in a convalescent home for many years at the end.  It was always hard to visit as she didn't recgonize you, but she was happy to have a visitor.  My Dad visited daily but his brother and sister went very rarely.  And she also always talked about going home.    My wife's (step)grandfather (he was in the family for 15 years, hard to imagine him not being there) passed a few months ago with dementia as well as some other medical complications.  After his wife (my wife's grandmother) passed, he was admitted as he could not stay on his own.  He always asked for his wife, said he was being released, his wife was in the bathroom.  The first few times was tough until you got used to him saying things like that.  Closer to the end, he would recognize our faces, but not be able to put names to them.  When it was too hard to take him out of the home, the family started to reserve one of the conference rooms on holidays (christmas, thanksgiving, easter, his birthday, etc) and we would bring the holiday to him.  Sure, the place did a special dinner in the cafeteria for all residents, but it's not the same. 

So while I know everyone's path is different, I fear what lays ahead.  As this is closer to home.  So for now I spend time with them, even if she doesn't remember later that day we were at the mall.  At the time she was happy. 

  

jfkoc
Posted: Tuesday, December 4, 2018 9:10 AM
Joined: 12/4/2011
Posts: 15794


You are doing a great job with looking ahead. Please include a handicapped bathroom!
smbren
Posted: Tuesday, December 4, 2018 9:38 AM
Joined: 10/11/2018
Posts: 43


jfkoc wrote:
You are doing a great job with looking ahead. Please include a handicapped bathroom!

Thanks for the kind words.  And that is a good point.  As we will start to look, I won't mind some remodeling to fit our needs, and I will have to keep bathroom needs in mind as well.  So if we have the general fit and size needed, we can then make the adjustments needed.  I don't expect to find something that fits exactly what we envision, but if the space is there, we can combine two bedrooms to make a Master Suite and such, same with the bathroom as long as the space exists.  If the space isn't there, it won't be for us and we will keep looking. 

But while I had in mind 1st floor for them, no more than 2-5 steps for the front door, which can ramp if needed in time.  Also wide enough halls.  But I did miss on keeping the bathroom in mind!  



Rockym
Posted: Tuesday, December 4, 2018 10:11 PM
Joined: 1/17/2016
Posts: 798


My mom was diagnosed with VD and just so you know, she had a very slow progression.  She was about stage 4 when I moved her to my state and was only in stage 5 when she passed three years later.  She was 86 and passed of natural causes.  The one thing I can say is that when I got frustrated with mom repeating questions over and over, I would sometimes tell her to hold that thought.  I would then walk out of the room, come back in and ask her how she was feeling, how lunch was or mention how nice is was to see her.

Mom never knew the difference and I used this method in the earlier stages when I got angry and lost my temper.  I admit, there were times I raised my voice and got upset, but then I simply left the room, came back in and all was well.  I would recommend this to anyone who is feeling the stress.  The more tools we have, the better we can work with our LOs.  Not only that, it's a great feeling when you find these tricks.


Relocated Daughter
Posted: Tuesday, December 4, 2018 11:08 PM
Joined: 7/21/2017
Posts: 105


smbren - The Savvy Caregiver course was facilitated by a local non-profit during 6 weekly sessions. I believe the program was developed by Emory University and they have been testing an online version of it. This is contact info I have from an email last fall when they were looking for participants. Katie Kilgore, Emory Project Director; Phone: 404-712-9578; email: Katie.Kilgore@emory.edu  or Ken Hepburn, PI, Phone: 404-712-9286; email: khepbur@emory.edu   

jfkoc's suggestion of a handicapped restroom is very helpful. My mom has a two-story house and I tried suggesting for years to extend the half bathroom, located on the first floor, and to add a bedroom to the ground floor. She never wanted to do either and I lived an ocean away so couldn't advocate any stronger. After her big fall that landed her in the hospital and then rehab, we were able to bring her home but I ordered a hospital bed for the living room. I also had a paid caregiver come in the mornings to help give my mom a sponge bath in the bathroom since there was no shower in there. It all worked ok but would've been much easier had renovations been made long before there was a critical need.

I had financial power-of-attorney but she was reluctant to give me healthcare power-of-attorney because she wanted to remain independent. I finally asked her doctor to write a letter, which he had no problem doing, and that kicked my healthcare power-of-attorney into play. By that point, though, she didn't care if I was in the room with the doctors. Creating online access helps a lot to keep an eye on finances. One challenge is that if you show the POA to the VA (if that's relevant to you) or Social Security, you will have to create a separate fiduciary account. I went through that with the VA and it was awfully stressful. I regret having applied for the $300/month Aid and Attendance money from the VA because it wasn't worth the stress I went through in getting appointed her fiduciary.


LicketyGlitz
Posted: Wednesday, December 5, 2018 1:58 AM
Joined: 2/3/2018
Posts: 180


Smb - All super spot-on advice here, and you sound pretty up for the challenge, which good on you 'cause the challenges are coming!

I would add that I was in a similar situation to you, Mom has vascular dementia and Dad had all their finances in order, including DPOAs and such, BUT... Dad's DPOA was for Mom, and Mom had two, one for Dad and one for me. What nobody counted on was Dad dying first - quickly, three weeks from diagnosis to death. So, if your parents haven't already written up DPOAs for you, or your sister, or whomever they choose outside of each other, have them do so ASAP. That way, you don't need to be on any accounts at all, you can step in as DPOA for your Dad if he requests it or dies, and for your Mom when it becomes necessary due to dementia.

I recommend this link: Preventing Challenges to your POA: https://www.nolo.com/legal-encyclopedia/preventing-challenges-financial-power-attorney-29587.html

Seriously, I have a durable POA but you still would not believe the number of legal teams out there who clearly have no clue as to what their doing. I wish Mom, Dad, and I would have read this before all the poop hit the fan.

Another bit of my two cents: dementia is a long haul for most families - I, of course, don't know your family dynamics at all, but I would caution everyone starting this journey to tread lightly with relationships. Getting through this requites a village of people to stay in touch, not just for your Mom's engagement, but for your Dad, for you and your family, for your sister - care giver isolation is the death knell to good care, and all of you may at one time or another shoulder this burden for your mother. You will need each other badly, and any other aunts, uncles, cousins, friends to keep your spirits up. Your sister, and others close to your Mom, may take a very long road to process what is happening - allow them that and encourage them to remain involved. If you've got successful strategies in dealing with your mother, be ready to share them, but also back off if necessary and allow others to find their own way. My sister and I were barely speaking when my Dad died and we resumed 24/7 care of our Mom, but we had to learn to work together (a lot of teeth gritting, and keeping my mouth shut) to support our mother in the best way possible. It is still not easy at times, but I have to respect that Mom may have dementia, but she still also has two very different relationships with her two very different daughters, and if my sister interacts with her in an entirely different manner then I do, that's their business to work out. We don't always like each other, but we figured out early on that no one else on this planet will take as good care of our mother as we will because we love her, so we better respect each other's way of doing things.

My last tidbit - there is a hurricane of horrid coming your way, but there are also times that are so funny, so precious, so hilariously absurd, don't hesitate to savor them, pat yourself on the back when your Mom has had a great couple of hours because of something you've done, or taken her too, or got her involved in.  Embrace crazy town, be ready for anything, and forgive yourself fast when you blow it. We are not at the end yet, worse is coming our way, but I doubt I will ever regret helping my Mom to the end of her life.

If your wanna read a first hand account of dementia adventures I blog about our journey at Stumped Town Dementia. https://www.stumpedtowndementia.com/ Good luck!

Good Luck!



smbren
Posted: Wednesday, December 5, 2018 4:57 AM
Joined: 10/11/2018
Posts: 43


Rockym wrote:

My mom was diagnosed with VD and just so you know, she had a very slow progression.  She was about stage 4 when I moved her to my state and was only in stage 5 when she passed three years later.  She was 86 and passed of natural causes.  The one thing I can say is that when I got frustrated with mom repeating questions over and over, I would sometimes tell her to hold that thought.  I would then walk out of the room, come back in and ask her how she was feeling, how lunch was or mention how nice is was to see her.

So sorry to hear about your mom.

Great tip.  Probably would work similar to me being silent as she doesn't remember a few moments later.  I guess, that falls in the 'diversion' category.  I have to get better with that. 

Thanks!



smbren
Posted: Wednesday, December 5, 2018 5:19 AM
Joined: 10/11/2018
Posts: 43


Relocated Daughter wrote:

smbren - The Savvy Caregiver course was facilitated by a local non-profit during 6 weekly sessions. I believe the program was developed by Emory University and they have been testing an online version of it. This is contact info I have from an email last fall when they were looking for participants. Katie Kilgore, Emory Project Director; Phone: 404-712-9578; email: Katie.Kilgore@emory.edu  or Ken Hepburn, PI, Phone: 404-712-9286; email: khepbur@emory.edu   

jfkoc's suggestion of a handicapped restroom is very helpful. My mom has a two-story house and I tried suggesting for years to extend the half bathroom, located on the first floor, and to add a bedroom to the ground floor. She never wanted to do either and I lived an ocean away so couldn't advocate any stronger. After her big fall that landed her in the hospital and then rehab, we were able to bring her home but I ordered a hospital bed for the living room. I also had a paid caregiver come in the mornings to help give my mom a sponge bath in the bathroom since there was no shower in there. It all worked ok but would've been much easier had renovations been made long before there was a critical need.

I had financial power-of-attorney but she was reluctant to give me healthcare power-of-attorney because she wanted to remain independent. I finally asked her doctor to write a letter, which he had no problem doing, and that kicked my healthcare power-of-attorney into play. By that point, though, she didn't care if I was in the room with the doctors. Creating online access helps a lot to keep an eye on finances. One challenge is that if you show the POA to the VA (if that's relevant to you) or Social Security, you will have to create a separate fiduciary account. I went through that with the VA and it was awfully stressful. I regret having applied for the $300/month Aid and Attendance money from the VA because it wasn't worth the stress I went through in getting appointed her fiduciary.

Thank for that information.  I'll be reaching out to them soon. 

On the bathroom, I was thinking as we look I want to make sure there is enough room to do a separate shower stall as well as a tub.  As walk-in at a point may be best, yet standing can be an issue too, but a shower bench can help with that. And I would imagine if assistance is needed, a tub would probably be desired. 

My parents had the foresight to do the DPOA, living will and such.  So Both of these are set to go to the other first and then to me.  While I am certain we could engage it if we asked the doctor to support us, and I know my Dad had to go to court with his mother for this many years ago, neither of us are ready to do that.  As soon as we feel we aren't able to stay on top of things and get info from the doctor, then we will have to.  But any such talk sets my mother off before you can finish your first sentence, so it's a topic we avoid bringing up with her.

I suppose rules on fiduciary responsibilities probably differ by states.  But I plan to keep their funds completely separate.   If it becomes necessary for long term MC, it can be draining on resources and the various programs out there can look back 5-7 years for finances.  



smbren
Posted: Wednesday, December 5, 2018 5:39 AM
Joined: 10/11/2018
Posts: 43


LicketyGlitz wrote:

Smb - All super spot-on advice here, and you sound pretty up for the challenge, which good on you 'cause the challenges are coming!

I would add that I was in a similar situation to you, Mom has vascular dementia and Dad had all their finances in order, including DPOAs and such, BUT... Dad's DPOA was for Mom, and Mom had two, one for Dad and one for me. What nobody counted on was Dad dying first - quickly, three weeks from diagnosis to death. So, if your parents haven't already written up DPOAs for you, or your sister, or whomever they choose outside of each other, have them do so ASAP. That way, you don't need to be on any accounts at all, you can step in as DPOA for your Dad if he requests it or dies, and for your Mom when it becomes necessary due to dementia.

I recommend this link: Preventing Challenges to your POA: https://www.nolo.com/legal-encyclopedia/preventing-challenges-financial-power-attorney-29587.html

Seriously, I have a durable POA but you still would not believe the number of legal teams out there who clearly have no clue as to what their doing. I wish Mom, Dad, and I would have read this before all the poop hit the fan.

Another bit of my two cents: dementia is a long haul for most families - I, of course, don't know your family dynamics at all, but I would caution everyone starting this journey to tread


Thanks for the info.  I'll check that link out. 

We learned after my brother passed last year that the POA had some issues.  I don't recall all the issues we had, but we had said we wished one of us was on the accounts to make it easier as we could have done the transactions (transfers/paid/etc) and then had the account closed.  Because we weren't on the account, we had some issues, and it just cost a bit of time.  I think that appointment with an elder law attorney will help give me some advice here as well.

I totally here you on the 'long haul' for families.  In addition to the brother that passed last year, I have a sister and another brother.  My brother is in denial about what is going on.  It's just forgetfulness that happens with old age.  I have yet to inform him of the actual diagnosis now, but don't think it will change too much.  My sister is more of a 'problem' if you will.  She knows whats happening, yet she continues to tease her and say I already told 5 times, you don't remember anything, and things like that.  And most recently after we (all adult family including mom) agree on something, my sister apparently decided she didn't really want that and later talked mom out of it, easy to do with her memory.  And now it sets my mom off.  But as to how they go about things and relate, you are right, it is between them but I don't want to see my sister setting her off and doing things we know upset her.  This is not something she can control and both of my siblings need to understand what is occurring better.  How the choose to help and support her through this time is up to them.

I like your idea of the blog.  I'll check yours out.  Someone had posted useful apps back a bit ago.  One of them was an app that was something of a diary I guess you can call it.  And it was multi user, so you can have all caregivers have access and even grant read access to friends if you wish.  I've never been one to do a diary, but may consider this.



 
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