So Much Stress and Anger.... I am Struggling With Everything

StrayCats86

Hello,

I am new here and just need some support from others going through the same thing and options/help. My mother is 94 and her short term memory is gone but she is still pretty sharp with other things and about 5-6 years ago I started seeing changes in her as she lived alone, we lived 35 miles apart but she would come down to stay with my hubby and I for a week or 2 for Dr appts etc as she hasn't driven in many years. She moved to the state I  reside in 13yrs ago to be close to me as she got older and needed help and then 5 years ago 1 of my older siblings and her grown kids moved an hour away but they are toxic and have no relationship with me and very little with my mom. Needless to say I have other siblings that don't care and never have so the burden is all on me and I am the baby. I do have 1 sibling that facetimes every night so he's in the loop.

I started noticing changes in her attitude with her neighbors in a senior building she lived in, she was verbal with them, fighting, accusing them of banging on the walls, playing tv's very loud keeping her up at night etc. and then when she came to my home she was starting to have conversations with her "imaginary friend" when in bed. She's always had a nasty attitude and nosey etc and kind of a trouble maker. I then started noticing other changes in her like hallucinating, telling me that people had been to her apt when they had not, people walking in her apt without notice, asking me why I didn't come in when I was there when I wasn't there. Then the lying to other people about my hubby and I, telling people we were stealing from her, being mean to her and so much more that my 1 other sibling who lives in another state not near here was believing everything she said and then he became toxic and threatening me so I cut him from my life because I am a heart patient and have other health issues. He had no idea what was going on with our Mom, nor did I other than these changes. So I lost 6 years with him. 

I began telling our Dr whom we all see of the changes in my mom at her appts so she started testing her 1st on paper with tests/quiz's  and as more changes started happening we were able to get MRI, CAT scans and other tests to determine what was going on. She has Vascular Dementia and Alzheimers and we think its Stage 3 Medium Level. Of course my mom doesn't believe any of this and thinks I am making the Dr say all these things so she's in denial. Well my Mom started not eating much to the point she lost 23 pounds in a couple months, falling, not paying bills on time, taking out loans etc so the Dr said she can no longer live alone anymore so because she only has Medicare she doesn't qualify for assisted living so she's been living with us since April and I have had to move her out of her apt and put stuff in storage, throw away stuff all while she fights us on everything. 

So now fast forward to her now living with my hubby and I, he works full time and I am no longer able to work. She doesn't walk very good anymore and has gotten even nastier, paranoid ,accusing, calls me names, threatens me etc. We can't go one week without a blow-up and I am so angry and stressed over the situation of having no help from anyone else and its all left on me, I don't have the patience to deal with this and I get mad and yell and I am a heart patient and I don't know what to do anymore, I cry at the Dr and tell her what is going on, I have POA but she will not allow anyone to help with her finances because she thinks we are stealing which we are not. I am just so tired of this situation I am in and the more I hae to deal with this the more I resent her and want nothing to do with her but I know part of it is the disease and the other part is just her nasty self. I am afraid it is going to cause me to have a heart attack. She doesn't qualify for medicaid so I can't get respite care or any extra help with her that I need. Now I need help for myself to cope with all this and no idea where to turn. I have no alone time anymore because she is with me 24/7! I am so sorry this post is so long, thanks for reading it.

M1

Welcome to the forum. Sometimes it's easier to ask forgiveness than permission, if you have the poa I would certainly use it regarding her bills etc. Put everything you can on autopay, it may be out of sight, out of mind. And as delusional as she is, have you discussed medications with her doctor? There are clearly medications that would improve quality of life for both of you.

Emily 123

Hi StrayCats,

I am so sorry.  This must be very difficult.  Calling the helpline may help you sort out some of your options for care, as the current situation doesn't sound tenable for you or your mom.  It's 1-800-272-3900.  I haven't had to juggle the Medicare issue yet, so can't speak to that.

I found it helped me to review the links below.  Understanding how my mom was perceiving things at least let me cope a bit better and give up on trying to reason with her.  Because they have no memory of past interactions it seems to the PWD that you are constantly 'making things up' (lying).  They'll try to come up with something reasonable to cover any holes in their memory, and so that becomes their reality.  Because of where the disease affects their brain, they don't recognize that there is a gap, and so do not recognize that there is an issue.  [Example:  Imagine that your husband came up to you one morning and asked you if you were ready to take the car to the shop to have them look at the dent you put in it last night.  You don't recall driving the car or going anywhere. And he keeps insisting you did, even showing you the dented bumper.  Eventually you'd get mad and tell him he's lying--maybe HE did it, and is trying to cover it up by blaming you!]   Something that will make a big difference is to stop disagreeing with your mom. Just don't go there -- agree and move on, or if you can't agree, just go ''mmm-mmmm''.    You can't win or make her see reason-that ability's gone.  And trying to reason with her will trigger a negative reaction, so don't try. What she can retain is the negative emotions from your conflicts, so keep things as low key as you can (I know, it's really hard).  Avoid ramping her up.  

http://www.dementiacarestrategies.com/12_pt_Understanding_the_Dementia_Experience.pdf 

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

https://www.youtube.com/watch?v=KKejCymVS2Q 

The constant stress on you isn't healthy.  You have POA and a dementia diagnosis, so you do have the legal right to start acting in your mother's best interests.  She should have her meds reassessed, at least. Your PCP may be waiting for you to take control.  If this is beyond her PCP's abilities, then at least get them to start to adjust her meds to get the behaviors reduced while you get a referral to a neurologist/neuropsychologist.  Remove any triggers for bill paying, etc, and as M1 says, try to get control of any online accounts/passwords (put your information in as the account recovery).  There are lots of threads here on strategies that have worked for people.  Good luck!

harshedbuzz

Hi and welcome to the best club you never wanted to join.

I am sorry your brother couldn't be more support, but I seriously side-eye a man who hasn't rescued his mom if he believes she's being abused. 

I got a sense in reading your post that two things might help you reframe how you process your mom's behavior.

The first is this:

12 pt Understanding the Dementia Experience (dementiacarestrategies.com)

I found this really useful in understanding how the damage to dad's brain impacted him- not just his memory, but his emotions, empathy and reasoning- in the context of an already challenging personality. YMMV, but I found dad's personality persisted well into the later stages of the disease. He retained his verbal skills, which meant he could readily attack and accuse.

The other piece to your mom's experience with dementia is that she likely has anosognosia and is unable to appreciate that she is not as cognitively impaired as she is. In her reality she is just fine. There is no point in discussing her diagnosis or limitations with her. 

That said, back when she actually was of sounder mind, she chose you to act on her behalf when needed. Don't think of taking the necessary steps to lock down her finances as something you do to her, but for her. Put as much of her bills on auto-pay. Lock down her credit with the 3 major bureaus so she can't get loans. 

Given your own medical issues and the expected progression of dementia, you need to explore ways to qualify her for Medicaid. If you have not seen a CELA to understand how Medicaid works in your state, you need to do that asap. Often there is a work around to spend down her assets or to create a trust so she qualifies for help. There is a 5 year lookback and you need to be sure she doesn't violate the terms for that.

I totally agree with M1 on medication. I would ask her PCP for a referral to a geriatric psychiatrist to trial something to relieve her anxiety and the behaviors it drives. 

HB

StrayCats86

Thank you all for your replies, suggestions etc. I appreciate it very much  

So yesterday was another really really bad day, It started good with me making coffee for her and I and giving her the daily meds etc then I asked her if she wanted to go get a Biscuit at a place she likes. My mom has really bad incontinence which I have heard can be caused from age and the disease? She sometimes can't fill when the pee is coming and has accidents but refuses to wear depends even though I buy them. 

Anyway, I asked her before we left the place we ate if she wanted to try and pee so she did try and it helped very little. I had to go pick up meds for myself and told her I wasn't sure how long id be in the store as I had other stuff to buy so I asked if she wanted to go or I could take her back home then I would not have to rush and also take a little time for me alone while out. SO she said just take me home then you can go get your meds, so I did that. I was gone a  little while and then my phone rang and it was my mom and she thought she was calling the place where her things are in storage, I said this is your daughter ..... She then started going off on me on the phone, accusing me of being crooked, stealing her things in storage and doing things behind her back so I hung up on her. So I get home and she is irate and flipping out accusing me, threatening to call the police on me etc. And of course it was too much for me and I blew up and got angry. I refused to speak to her the rest of the night and she basically stayed in her room all the rest of the day and night except to get up to pee. She didn't get up to eat, take her meds or anything. So at 1am when I went to bed I could hear her in her room yelling at me "Go to bed, go to bed" 

So this morning she woke up and acted like nothing had happened at all, I looked in her room and saw that she had taken her meds last night and had raided the fridge cause there was a glass by her bed and a spoon where she had gotten hungry and ate something lol. SO today, I fixed her meds for the week, gave her coffee and she took her meds. We then left for a little while and she has been fine so far today and is taking a nap. So a little bit after she layed down I could hear her in her room talking to her "imaginary friend" which this time was her sister in NC, she was saying she didn't know what she was going to do and that she wanted to go visit them one last time as they are all older and not in good shape and its been many years etc, so I looked around to see if maybe she was on the phone but nope, So I don't understand why they have "imaginary friends" and conversations like that? What causes this? 

So every day is different and I notice when it comes to packing up her stuff to put in storage and clean up her room she gets nasty and  then it gets bad and some days it starts out good then at night gets nasty.

As for her bills, they come in the mail to my house since she lives here now and the bank said I can bring the POA to them and get access to see her account without her knowledge, she does not use computers or any of that so I would have to set up online accts etc but if no bills were coming for her it would be a red flag for her. We had a therapist coming to see her once a week and she told my mom that she needed to let me help her and she said no and because she didn't want the help of the therapist she stopped coming out. 

As for Medicaid, she qualifies medically but not financially because of her life insurance which isn't much but its enough to cause her to not qualify. They told me how to get her the help but when I explained it to her, she refused because again she thinks taking money from her policy will cause an issue going forward. She has 2 and 1 she almost lost because of not paying it for 3 mo and then while packing her up I found a bill saying it would lapse so I called them and sent them the POA and it got paid in time. Is there a way for me with the POA to get her the extra money from her policy so she can qualify financially? Since it draws cash value she could spend it down and pay bills or whatever but she would have to do it?

As for my Brother, he is older (66) than me (53) and lives a few states away but he and I are now speaking again and he facetimes every night and sees and talks to our mom and now gets what she is doing and what I am going through. I call him crying and to vent and he tells me he could never do what I am doing and he knows how difficult it is for me. He has had 2 heart attacks 4 years ago himself. 

Thank you all for reaching out and reading my long posts. Any advice you can offer is appreciated, I told my brother to join here so he can do some reading.

Iris L.

StrayCats86 wrote:

 What causes this? 

So every day is different and I notice when it comes to packing up her stuff to put in storage and clean up her room she gets nasty and  then it gets bad and some days it starts out good then at night gets nasty.

I suggest that you become proactive instead of reactive.  Your mom has dementia.  Everything you mention is "normal" for a PWD (person with dementia" but is is new and unsettling for you, because you are not expecting it.  PWDs do better with a consistent routine and a simple environment.  You will have to learn to stop asking so many questions.  It's confusing and agitating to her.  But she won't be able to verbalize this because she has anosognosia, which is unawareness of having dementia.  Delusions are fixed false beliefs.  To her they are reality.  Read the online reading material and many threads.  Then you will have ideas about how to approach these common challenges.  

Iris L.

Emily 123

The decisions you have to make now will go much more smoothly if you don't involve your mother in them.  I recommend you browse the threads here.  With dementia, the person can continue to have conversations and interact socially for a long time, even when the person's abilities to reason are off track. As you've seen, your mom is unable to understand what's going on, as she has no short term memory.  Contradicting her reality launches her into a meltdown, and it's more beneficial for you to have peace, so don't contradict her.

As mentioned by others, at this point I would ask the advice of an Elder Law attorney(CELA): https://nelf.org.    They can walk you through setting up what you need , including discussing the Medicare/Medicaid issues.  The funds to pay for a visit should come from your mother's account. 

In terms of the bills-she's forgotten to pay her insurance for 3 months.  If you switch her accounts to online and eliminate her paper bills I guarantee you she won't realize it.  The bills are a trigger when she sees them.  Don't discuss finances with her.

You should discuss the hallucinations with her physician soon, as well as the rest of the behaviours.  If your mom hasn't been checked for a UTI, ask if the physician will order a urinalysis.  

If you need her cooperation for anything it sounds like you should be doing that during the 'best' part of her day (see 'sundowning')  

Rescue mom

I’m going to try to take this point by point, but there will be a lot of repetition, and a lot of what’s been said before, but maybe more plainly….

When she acts like nothing has happened, it’s because, in her mind, it hasn’t. She does not remember any of that, so nothing has happened. You cannot convince her otherwise. She is sick, her brain is broken. You cannot make cancer go away just by ignoring it. This is the same. You can tell them what they should do, but it Does. Not. Matter. Arguing will just tire you out, and make her angry, neither of which is helpful.

Her imaginary friends are real to her. Her brain is broken. She is not rational.. It is a waste of your energy to argue about it. She is sick. Do not discuss paying bills or any financial matters. She cannot understand it, and it obviously upsets you both. Just stop. You do it. She is not capable of making those decisions. Do not ask her about financial matters. Now—and it’s hard, it’s not fair, and it may seem wrong—you have to decide. You. She cannot. Her brain is broken. It’s much like dealing with toddlers. They may have preferences, but you cannot, for their own well being, let them dictate what you do.

You need Medicaid. You do what you have to do to get it. You do Not Ask Her. She is no longer able to make those decisions. Her brain is broken. She simply, basically, can not do it. 

Re-read what Emily said.

Her behaviors are very typical for dementia. There are meds that will help her feel better, and help you deal with her. But there are no meds that will “fix” her. You have to be in control now. You have to act, and for her own best interests, it almost certainly will be without asking her what she thinks about it. She no longer thinks in a rational way.

StrayCats86

Thank you all for the guidance  

First let me say I have been her POA since 2015 because I have always been the closest with her out of all my siblings hence why I am the only one dealing with this now besides other things like they don't give a flip.

I don't know much about being POA and what I can and can not do with it so some info would be helpful? I can not afford any atty's nor can my mom, so getting conservatorship is not an option so I will not be hiring an atty. My mom has nothing, she owns nothing other than things in storage that she values which most doesn't have any value at all. There is no hefty bank account and no will, just enough money to take care of her wishes.

Our PCP has her on Risperidone 1mg, she takes half am and half pm cause if she takes a full dose it makes her act strange. So far this has not helped with her mood.

So if I put her bills on auto pay and she doesn't get bills in the mail anymore your saying she will not notice that? She has a habit of calling places and asking questions etc because of being paranoid and accusing people of things that are not happening. I don't have access to her bank account except as a beneficiary so I can close it when she dies but with POA I can go up there and see the account but can't do transactions so how would bill pay get set up? I don't even have bill pay myself cause I prefer to pay myself. Its just a lot to learn and do. 

abc123

I do realize, first hand, that caring for a PWD is very difficult and often nerve racking. What helped me was to remind myself that my mother has brain damage from the dementia, Alz. I don't include her in anything important because it causes her to become upset. I ask almost no questions at all about anything. Read everything you can possibly get your hands on, read as many post on this forum as you can possibly stand everyday. Take advice from no one who has never had hands on experience caring for a PWD. See a CELA for advice and guidance. I think you mom may benefit greatly from medication. You are now the one in charge, you are now the parent. Hang in there. We have a lot of good people here who can help you through this. I have learned more here by reading what the other members are actually dealing with day to day, caring for their loved ones than I have from any PCP, NP and Neurologist.

abc123

Some CELA's offer a consultation at no charge. You really need legal advice. As her POA you are legally responsible for her. I would also limit her access to a phone. She could get scammed, she could make a huge purchase, the list is limitless. There is a 800 number here, no charge, they are trained professionals. Good luck!

Rescue mom

You can call your local Alzheimer’s Association, and they will help you, for free. Theynwill meet with you and go through things like POA, and what lawyers work with this, and other issues you face, and help that’s available locally. They usually know some local lawyers who take a few cases for free.

The mail comes to your house, right? You get the mail first. Do not give her bills, do not show her, say nothing about it.  She is unlikely to remember if she does not see it. If she does, you say, “oh, I’ll call the phone company (or whatever) and get that bill sent again.” Rinse repeat. Meanwhile, take the POA to the bank and take them up on their offer to help.

As already said, her having a phone is dangerous. She could get scammed, spend money on crazy stuff, etc. The phone needs to disappear, “break,” or put controls on it that limit her activity.

StrayCats86

Hello,

So today has been good so far, other than her still not wanting to finish packing up stuff to go in her storage since she now lives with us. Ive been moving her out of her apt for the last  4 months and putting stuff in storage etc and I just want it done and over. 

I went to the grocery and mom stayed home and shortly after I came home she started a conversation with me where she was telling me that there was a mysterious lady out on our back deck that she didn't see her face but had a conversation with her, she was telling me that the lady worked here (at our home) and that she worked in the subdivision and that she was upset about something. I kept the conversation going and was  asking her questions and video taped it to send to my brother and to also show the Dr.

The last few nights she has been sleeping better which is a plus but her walking with a cane is not very good anymore and when we go out I take her walker with wheels unless there is a buggy for her to push. For about a year now she has been having swelling in her left foot and they are trying to rule things out so the heart dr lowered 1 of her bp meds cause at her age that can cause the swelling then shes going to a foot dr and to get an echo done this week.She doesn't have any heart issues other than a slight murmur.

RescueMom:

Yes the mail comes to my home now as her mail has been starting to come here the last few weeks and I am not sure how many bills she has sent out updating her new address (my home) but today she got 2 more cc bills saying she is 3 mo past due. I sent the bank manager who we know an email about the POA and will go take it to him when I can slip away without my mom asking questions about where I am going. I hope they can help me with the auto pay etc. Should I be contacting the cc companies she is paying or just make an online acct with an email for her. I am keeping a  record of the names of bills as they come in until I get the bank info.

As for the phone,

She had her own phone in her room and no one had been calling but she has 2 sisters also elderly in NC that she calls at times but she decided she didn't need a phone anymore but we have a home phone and cell's due to my health issues. My home phone never rings cause no one has the number and I rarely get scam calls but ive noticed when she tried to make a call, if she doesn't dial it fast enough the call will not go through anyway. And now her hearing is not so good so she can't hear well on the phone. Only her sisters have my home phone and they don't call often due to there own health issues. She's not in the habit of calling and placing orders for stuff and rarely did that in her own apt.

Before she moved in with us, not sure exactly when she did this but she did take out a loan, but that came in a check by mail offering her a loan telling her all she had to do was deposit it to get the money, and she managed to get to the bank and deposited it and I only found out when she moved in with us because they had been calling her phone daily because she was late and now I take her in person to pay that bill and they now know her health condition. 

Please advise what to do for cc online? 

Thanks so much  

Emily 123

Because your mom may be using medicare/medicaid, you need to keep good definitions between your accounts and hers for any medicaid 'look back'.  If she's living with you, she should be contributing to some of the bills, but it needs to be clear what she's paying for. My mom would put groceries on her credit card for us every other week, as well as pay for her personal needs, meds, etc. When we moved her to her AL she then wrote a 'rent check' to me to cover that time she was living with me + her moving expenses.

If you're sick of moving your mom's stuff over and you want it to go quicker, follow the advice of the many posters here and just wrap it up--your mom can't make decisions anymore. Stop asking her for her input.  If that means your brother or husband does it, or they take over mom's care for a few hours so you can finish it, do it.

Setting up an online access so you can act as POA:

I would go in this order:

1. Set up online banking for your Mom's bank account. If you need the bank manager to help you with this go ahead and set up an appointment.  Ask your husband if he can watch your mom for a few hours if need be. The account should still be in her name, but use your address, email, and phone number. You can list yourself as the second contact. If you have to sign anything,  sign it with ''acting as POA''. Do not involve your mother.

Use your cell phone number as the contact, because that can receive texts--texts can be sent to help you reset passwords, etc. Once you set up the account online you can log into your mom's account via the bank's webpage and set alerts for things like daily spending limits.

2. Set up bill payments at her bank webpage.  Login to the account you just set up, and you will see a 'pay bills online' section.  You should be able to enter the names of the entities that she pays-for example, her credit cards. Sometimes there's a section that lets you pick those out from a drop down menu.  You do not have to set these up as autopay--you will just have to review the bills and enter the payment that needs to be sent each time something is due.  Do not involve your mother.

3. Now that you've set up her bank account online and set up her bill payments, look to see if there is a 'receive paperless statements' option -if you opt in for this you can set up a monthly e-mail statement for the account, rather than getting statements  in the mail.

4. I'm not sure why your mom still has access to a credit card, but if you must, then set up online access through the credit card website.   Make your address, email,  and phone the contact numbers.  (As you do this process keep track of the login and passwords you use for all of these, of course).  Select paperless billing.  If you cannot set up the credit cards online so that you can have control over them I would cancel them all and get her a credit card from the bank where she has her account.  You could do this when you do step 1. Do not involve your mother.

*  I really recommend getting her down to one credit card. Keep the one she uses most.  Pay off the oustanding debt on the others and close them. Remove those cards from her wallet, tell her they expired, and that new ones are coming. 

Soothing your mother:  If she's a bit hard of hearing, consider getting her a voice amplifier like this one.  It can make a big difference. https://smile.amazon.com/gp/product/B019EDGWGO/ref=ppx_yo_dt_b_search_asin_title?ie=UTF8&psc=1

Music--see if playing music from a time when she was younger (high school to 30's or so) is helpful.  I use 'Pandora' online for my mom and just searched and selected for her favorite Jazz player as well as 'big band music' as the stations for her to listen to--she loves it.

StrayCats86

Emily123

My mom is only on Medicare because she doesn't qualify for Medicaid because of her life insurance. I have started writing down who she owes as they come in the form of statements until I can get something from the bank. When she had an apt she was paying rent over $400 which she is not paying now so why is there a need to document if she is or is not paying us anything, why would that even matter? We pay for the groceries and everything at our home and sometimes I buy things my mom may need as well just because I choose to if I know she's low on pads etc. My accounts have nothing to do with her. I am just starting with hers and not even sure how long it will take.

I realize my mom should have no say but her stuff is in our garage and she raises hell if she see's us go into the garage because she thinks we are taking/stealing her stuff. Most of her things that she is keeping is already in storage because ive been moving her for 4 months but even though she has Alz and VD she is still sharp in other ways. 

If I set up all her bills online and she realizes that she's not getting bank statements and wants to go to the bank to take out money they will give her a statement if she asks. My thing is how do I explain anything after the fact? She may be forgetting to pay her bills but she still checks her balance etc. 

I read these boards daily to learn more and I hate that I am even having to go through this, my MIL also had the disease but was never nasty and cancer actually killed her.