Trying to follow all the advice, but...

SallyE

I am sure there will be many out there that have dealt with the same thing, and the long termers will think 'oh another post just like a million in the past'. But I'm new, I've read through a page of topics and not exactly finding answers for my particular situation. I actually don't even know what my questions are, to be honest. 

My mother is extremely stubborn. Always has been. It has increased dramatically since we started suspecting dementia. She is 80. We lost my father in 2017, she cared for him for 4 years after he had a brain aneurysm and after he was gone, we could tell she felt useless. We tried to involve her in more things and she would claim she didn't feel good and always back out. She lived on our family farm until a year ago when we just didn't feel she was safe and asked her to either go into assisted living or to move in with my brother. By that time she was forgetting to pay bills, letting her pipes freeze, the house does not have a furnace it has always been heated with a wood burner stove, so you can imagine the issues that alone was causing, and she was falling a LOT. 

Anyway - that is a brief backstory. Over the last year things have declined and in October the family convinced her to move into assisted living. She has medication assistance, she does not remember to take her pills. She has everything to still pay her bills, but I keep a watch over them as she isn't really doing it, and I just take care of them when I see she is not. She has a sharp mind and is very very quick to find a comeback when she is 'caught'. ie - forgot appointment, forgot a name, forgot a date, you all know the routine. She feels for some reason that the things that have come with aging are a personal failure, not an inevitable. So she refuses to admit that there is anything wrong. 

I keep a very careful watch over everything and try to quietly take care of things in the background. As in when her bloodwork comes back with issues, I make the appointments and then a few days before them, I mention it to her and we just act as if it's been planned for awhile, she scheduled it, etc. I try very hard not to say 'remember' to her. I fail a lot. 

She has become very bitter toward me. I have 2 brothers that were also involved in getting her to assisted. Her house is in such disrepair now, there is no way she can go back home, but she still tells everyone she is. For the most part, I just don't say anything. My brothers are not involved much now. They call her, but her care, transportation, etc is 100% on me. She has begun telling everyone that I have locked her up, I won't let her drive, I won't let her do anything. (I pick her up a couple of times a week on my days off and take her shopping, or to places of entertainment) I've told her that it hurts me. She says she's 'being facetious'. She posts things on facebook like this. She is telling her doctors this. A couple of the doctors have looked at me and said 'why are you doing this, this is your mother'. I just don't respond. A few times I have snapped at her. I'm trying to practice taking 5 breaths before responding. I fail sometimes. I try to get her involved in activities, she kind of does her best to make them unenjoyable so I just take her back. She's very angry that I won't let her drive, but there is absolutely no way I can let her. I tried to explain why and she just argues with me. It's got to where I just don't even really say anything, because she either gets mad, comes back at me with ridiculous arguments (I'm just going to go get my car and drive anyway, I don't care if I don't have a license), or talks bad about me to other people. Some understand her dementia, some think I'm a terrible daughter, and that is hard. I don't know why I became the target of her anger, but here we are. And it hurts when people believe her, that she is fine and should be at home and for some unknown reason I decided to lock her up. 

So I guess this kind of turned into a dear diary for my first post. I'm sad, I'm exhausted, I'm trying to do things right and hitting walls every way I turn, I'm angry and I hate admitting that, I'm angry at her for making this so hard on me, and I'm angry at myself when I feel this way. I'm trying to give her quality of life back, and she feels I've taken everything away from her. 

Is all of this normal?

SusanB-dil

Hi Sally - welcome to 'here, where, as i have seen, we wish we didn't have to be.

yes - those feelings are normal.  There are days that you feel like you are mad at the world, mad at everything, and really, we are truly mad at 'this' dang disease!  that has robbed us of the person we know and still love.

Good for you for stepping up - and getting her off the road and watching her finances. This is hard all 'round. Yes, downright hurtful at times.

Two things that come to mind after that - is there a way you could slip the doctor a note as to what is really going on?  I have found, through this forum, that it is something MIL does at times, is called show-timing. A PWD sometimes has the where-with-all to somehow pull out the stops and appear to others as if they are fine. You know the truth.  tell the doc.

The other thing is getting things in order - POA and HIPAA paperworks.  Get this ASAP if not already.

You are watching out for her best interests, even if she can not acknowledge that, and even when she will lash-out.  You are a blessing!

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SallyE

That is an amazing idea, letting the doctor know ahead of time. I have so much to learn.

I do have all legal documents. POA, durable and medical, and I have put my name as primary on all of her accounts, changed the address to mine, and sent them all copies of the POA. We lived in a very small town, so a lot of her business (insurance, banking) is done locally and I know the owners. I've personally stopped and talked to all of them. I go out daily and check her credit cards and bank accounts. 

To talk to my mother for a short time, she appears completely normal. After a longer time, you notice her contradicting herself, having problems with words, and the biggest giveaway, she repeats herself, a lot. But, most of the time, interactions are short. So it does look like I've locked her away for no reason. 

Thank you so much for your advice and calming words!

M1

Hi Sally.  If you haven't run across the term yet in other posts, look up anosognosia.  This is part of the disease and it is more than denial, it is true inability to recognize that she has deficits.  70% of people with dementia have it, and from your description, so does your mom.  Best not to discuss dementia with her, just with the docs.  She'll never believe you, and it will only frustrate both of you.

Glad she's already in AL, don't back down on that.  You can keep coming up with excuses as to why she can't move home--pipes are still broken, can't get work done now b/o covid, whatever it takes.

SallyE

Your words brought tears to my eyes, and I have not cried since this began. 

You are right - I have no idea how to understand where she is and what she is feeling. A year ago I told her, mom - I will never try to run your life or get involved until I am worried about your safety. So when it comes to that point, you have to trust me. But that was then and this is now and she doesn't believe me and she doesn't trust me. I am going to have to figure out how to open my heart and my mind. Stop with the need to make her understand reality, and begin accepting her reality. I think that is going to be the most difficult thing I've ever done, because that isn't natural for me. 

Thank you so much for your reality blast. And your closing statement, it hit me in the feels. 

SallyE

Thank you - that sounds exactly like her. She has said and done some things she would never do in the past. She has neglected herself. Later, when I mention something she did as an explanation why we are in AL she is mortified, she cannot believe she would ever do/not do that. So, to her these things are not realistic because she doesn't remember them, so they don't exist, hence the dementia doesn't exist. 

Coming up with a more realistic reasoning, such as the pipes aren't fixed yet, is such a great idea. It won't hurt her feelings and in a few days she won't remember that I've been saying that excuse for a long time. 

thank you so much for your advice!

Battlebuddy

   Sally, 

   So sorry you have to be here and sorry your poor mom has dementia . In the beginning it’s oh so tempting to try and reason with someone with Dementia. In our minds we see them as the capable person we remember. We want to drag them back to our reasonable reality. But they now live in a different reality , complete with different rules. 

  One of the hardest things a care giver has to learn is to step into THEIR world . It requires a shift of thinking. It also requires a lot of agreeing with that person even when it makes no sense. It definitely takes time. The caregiver has to use fiblets ( like that the pipes are still frozen) which feels like lying , but is needed to keep love ones safe. 

    To the point that you are the main sibling helping and have become the bad guy, that very often happens. Some say they lash out at those they are closest to. It’s just terrible when it happens. My heart goes out to you. 

   One word of encouragement about your mom telling people you put her away. There are so many people out there who have a loved one with Dementia . All those people would know there is more to the story.  I would just tell people that she has dementia and I was appointed by my mom as her caregiver and we are keeping her safe .Say it as many times as you have to. That Doctor should know better too. 

  Sounds like you are an amazing daughter . You are doing everything you need to do. Your mom is lucky to have such a caring child.  

   

Emily 123

Sally, 

You are not alone. You're doing great. This forum is a lifesaver.

This article below helped me start to realize that my mom really could not handle things that were more than one or two steps--the memory of what to do and in what order just isn't there anymore, even though to outwards appearances Mom could have reasonable conversations with me.

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

  Because we could still have a sensible conversation, I was treating her as if she still had the capacity for reasoned thinking, but that's really hard to do when your short term memory is gone.  Here's what I learned:

Think about what triggers the conversations you have with your mom that lead to disagreements. Remove the triggers.  In our case, mom's bills reminded her that I was writing checks for her. She didn't like that, but she wasn't able to initiate paying them.   So everything went online.

Don't try to make her see logic. Agree, and deflect ('Oh sure mom, I agree...Hey, I'm going to run to the store for some cookies, do you want some as well?)

There's lots of challenges for the PWD anywhere new.  It took my mom 6 weeks to kind of settle in at her AL, and about 3 months until I felt like she had really relaxed. She was a bit lost at first. It took me a long time to realize that keeping my mom 'busy' with things she used to enjoy was actually just throwing challenges at her where there was a real possibility she'd fail, and get frustrated or angry.  Now I limit what we do to pretty simple things-going out for lunch or for a drive-and she's actually content to relax at her facility and would rather be there than out and about where unexpected things might occur.

Why not cut back on your visits for a bit until things feel a bit more balanced? That would let mom settle in some more and you could regroup.  You've gotten a lot done over the last four months, and it doesn't sound like you have a lot of backup when it comes to wrangling mom.  Take a break. The mom you grew up with would want you to be kind to yourself, and would be proud of you. You can't take care of her if you don't take care of yourself. If you can't reduce the number of visits, just pop in to say 'hi' for 5 minutes and then go.  Mom doesn't need to see the car, which is of course, as others have pointed out, in the shop.

Also--some AL's have their own physicians. If that's something that hers offers, consider if that would be a convenient switch.

These videos were also helpful to me.  Best wishes!

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

https://www.youtube.com/embed/videoseries?list=PL2E2lPBsUeBjA1Utglo8q6yANAijEf8cX

Iris L.

SallyE wrote:

. A year ago I told her, mom - I will never try to run your life or get involved until I am worried about your safety. So when it comes to that point, you have to trust me. But that was then and this is now and she doesn't believe me and she doesn't trust me. I am going to have to figure out how to open my heart and my mind. Stop with the need to make her understand reality, and begin accepting her reality. I think that is going to be the most difficult thing I've ever done, because that isn't natural for me. 

Welcome Sally.  Yes, you do have to stop discussing so much with your mom.  Her failing brain cannot handle complex thought.  From now on, focus on pleasant, in-the-moment topics--nothing challenging or triggering.  Avoid talking about money and finances!  Read the online reading material, and especially about anosognosia--it will help you a lot.  The members here are knowledgeable and willing to share.

Iris L.

mommyandme (m&m)

Yes it’s normal, as you’ve received already from all those wise.  Mid stage is so hard for many reasons, reasoning to be a big one.  

My mom blamed me for taking her driving privileges away, even though it was actually the police department when they pulled her over in a fog.  I told her it was her doctors decision.  

Even though in late stage I still blame doctors for everything like having to get to the bathroom or taking meds or anything.  I believe since she was a RN, the doctor speak works.  

I’m so sorry that you and yours are on this journey, still I welcome you here.  This is a very supportive and informative group that I find invaluable.  

PaulaPrecious2mom

I agree with everything that has been said, particularly the suggestion to slip the doctor notes before an appointment. This is something you will become VERY good at. Your mother sounds like mine in the earlier stages. She was a pro at confabulating (answering a doctor’s questions without hesitation, but with very inaccurate information).  As the disease progresses, and to preserve your mother’s dignity, you may find it helpful to include in your note that your mother will speak for herself, but to look to you for confirmation or correction. You can sit to the side or slightly behind your mom so she doesn’t see you gently shaking your head No. Your mother is still ‘with it’ enough to recognize her memory problems, but is naturally fighting it tooth and nail.  

A couple of other suggestions I  agree with: 

• Shorten your visits. Arrive an hour before dinner or lunch, then leave after you walk her to the dining room.
• Bring a treat. A dementia nurse on this forum made a profoundly simple statement that I have come to live by. She said ‘It’s hard to complain with a mouthful of chocolate’. This will serve you particularly well as she progresses. Every time I visit mom, I bring her ice cream. She associates me with ice cream now.  Cool.

I wouldn’t worry too much about what your mom’s friends think. Chances are they’ve noticed some of the peculiar behaviors. 

Keep reminding yourself that deep down, your mother does trust you or she wouldn’t have given you POA. Visit this forum often. You will learn so much. And, know that you are not alone.

sandwichone123

There's lots of great information here. Another resource I like is youtube videos called "Careblazers." If you search that term you should find them. The person who makes them is a geriatric psychologist who specializes in dementia and she has a ton of information about how to deal with ineffective thought patterns--what is helpful and what's not when dealing with a person with dementia.

Kdsfit

 Number one rule. Take care of you. Easier said then done. I’ve experienced the same thing. I’m the scape goat. My mom hurts me sometimes. She was never ever like that. Is taken me time to understand its not her anymore. I’ve failed also. We are human. 

Mom continually said she was going to her place in Florida  i knew she was not capable of booking a ticket so i told her to go ahead - never happened  but it alleviates a fight  

I can suggest only 2 things (others have posted some really great ideas). If it’s difficult, walk away. I know she sent mean it but i leave memory care and go cry in my car a bit. I give myself that time and then leave. Try again another day. 

If she is still considered competent get POA. MY mom refused. Said she was fine. We had to hire lawyer and get guardianship. Bills had not been paid, in collection, etc. This took a year to get and is not an easy process to continue. In MN is a ton of work. So please, try to get poa and health care directive if you can.  

Hang in there. I know what you are going thru!