Dementia, anger and stubbornness. Any advice?

I'm confused; if your mother is refusing to urinate, then how is she functional? She would need to get to an ER for catheterization, at the very least.

You also say your mother has been suffering from dementia for 19 years, or, since she was 64? This is very unusual, unless it's Alzheimer's Disease she's been diagnosed with, which can last quite a long time. But even with AD, 19 years is a VERY long time to live with a terminal disease like that.

If you don't want to 'put her in a home', like a Memory Care Assisted Living residence where she can be cared for by a staff of people 24/7, then learn all you can about dementia/AD, if you're going to be her full time caregiver at home. Things only continue to get worse as time goes on, and her paranoia & accusations are par for the course. She's not 'lying' to you as much as she's living in HER reality nowadays.

Dementia and/or dementia-like behavior is extremely difficult & frustrating to deal with, that's for CERTAIN! It's important for you to realize that DH is now limited in what he's capable of doing & is not intentionally 'lazy' or trying to act apathetic.

I suggest you read this 33 page booklet (which is a free download) which has THE best information ever about managing dementia and what to expect with an elder who's been diagnosed with it. Medication isn't always the answer for 'behaviors', either; it's more about how YOU respond to HIM that makes all the difference.

Understanding the Dementia Experience, by Jennifer Ghent-Fuller 
https://www.smashwords.com/books/view/210580
Jennifer is a nurse who worked for many years as an educator and counsellor for people with dementia and their families, as well as others in caring roles. She addresses the emotional and grief issues in the contexts in which they arise for families living with dementia.
The full copy of her book is available here:
https://www.amazon.com/Thoughtful-Dementia-Care-Understanding-Experience/dp/B09WN439CC/ref=sr_1_2?crid=2E7WWE9X5UFXR&keywords=jennifer+ghent+fuller+books&qid=1657468364&sprefix=jennifer+ghent%2Caps%2C631&sr=8-2


Here is a list of useful tips from her e-book I found to be excellent:

The “Dont's”
· Do not reason and argue
· Do not demand that they reason or problem-solve
· Do not demand that they remember
· Do not demand that they get their facts straight
· Do not correct their ideas or scold them
· Do not reorient them
· Do not think that they are being uncooperative on purpose
· Do not think that they really do remember, but are pretending not to
· Do not use a “bossy” dictatorial attitude in care
· Do not act with impatience

The Do's
· Enter into their frame of reality, or their 'world'
· Be aware of their mood or state of mind
· Use few words and simple phrases
· OR use no words, just friendly gestures and simple motions
· Do everything slowly
· Approach from the front
· Wait for a slow response
· Constantly reassure them that everything is 'OK'
· Keep people with dementia comfortable 'in the moment' - every moment
· Maximize use of remaining abilities
· Limit TV or radio programs which they may feel are frighteningly real
· Maintain privacy
· Provide a safe physical environment

Language Needs
· Use short words
· Use clear and simple sentences
· Speak slowly and calmly
· Questions should ask for a “yes” or “no” answer
· Talk about one thing at a time
· Talk about concrete things; not abstract ideas
· Use common phrases
· Always say what you are doing
· If they repeat their question, repeat your answer as you did the first time · Give them a longer time to process information
· Wait patiently for a response
· Be accepting of inappropriate answers and nonsense words
· Speak softly, soothingly and gently

Continued...........

Continued from previous comment:

Care Needs
· Recognize that receiving personal care feels intrusive
· Reassure with your tone and manner
· Do one thing at a time
· Talk through the care “play-by- play”
· Be aware of your body language and use it to communicate relaxation and reassurance
· Be sincere
· Use a soft, soothing touch
· Be aware of the individual’s unique triggers
· Be aware that a person with dementia may not accurately judge whether a situation is threatening to them
· They may respond to fear, pain or anxiety by defending themselves with what we call “aggression”
· If they become distressed, stop immediately and allow them time to calm down – don’t try to restart the activity right away
You need to change your behaviour to adapt to the dementia because the person with the disease cannot.
 
You can also watch Teepa Snow videos on YouTube to learn how best to interact with a dementia patient, how to help her shower when she refuses to, etc.

The 36 Hour Day is another excellent reference type book to have on hand at home to get many questions answered that you're going to have.

Alzheimers.org is an excellent website to peruse to learn all you can about dementia/AD, and they also have a free 800 phone number you can call to chat with a live person with any questions you have.

Remember that the mother you see now is not the one you've known your whole life. Her mind has been taken over by dementia, so her personality can and likely will change. She can become mean & say horrible things to you, like my mother did, as her filter evaporates.

My mother lived in a wonderful Memory Care Assisted Living residence when she became wheelchair bound, incontinent, and otherwise too much for the caregivers to handle in regular Assisted Living. Making promises to your mother in good times hold no water in bad times, and often have to be broken when you've reached your caregiving limit & she becomes too much to handle. Hopefully she has a good doctor/Neurologist you can also call for medication and advice as her disease progresses and the agitation/Sundowning/anxiety increase. You can expect hallucinations and Confabulation to occur as well, where she makes up convoluted stories she'll insist are true. Including you being The Bad Guy and doing God knows what to her. Just be prepared the best you can.

Best of luck.

mladylake
Always start with a test for a UTI whenever Dementia symptoms escalate suddenly.
But yes, dementia can escalate to where you feel like you are dealing with a different personality. She is not lying. She is ill. In my DH aunts case she would be/could be a real stinker and then later be back to her sweet self. My husband found her behavior familiar to him as to how she could be when she was younger. I had just never known this side of her. She may have been ugly to someone else but never to me…until she was. Get her tested.

I too wonder about the 19 years. Dementia itself, depending on the type, usually runs its course 5 to 7 years. ALZ, even though under the Dementia umbrella, is very different in the way it effects the brain so people tend to live longer. Are you sure Mom did not have some type of mental illness that now has gone into Dementia.

If she sees a neurologist, see if there is a medication she can be given for these symptoms.

When my mother has a change in behavior, we always check for a UTI. You can find tests over the counter now. If it’s positive, you can let the doc know that. You may not have to wait so long for an appointment If it’s negative, you can also consider asking for a test in the doctor’s office.

If no infection, you may want to consider asking for some anti-anxiety medication. It was a godsend for my mother. She could actually function without being quite so terrified and angry.

If all of those bases are covered, know that dementia stages come to an end. My mother is back to being a whole lot sweeter than earlier in her dementia.

Good luck to you.

It might be time to consider placement in managed care for your mother. Her dementia is only going to get worse. It's better I think to place her now so she can at least still have a chance of being able to acclimate to a new living situation.
It will be better for you, your husband, and your son to place her before she becomes too much for you to handle. I worked in homecare for 25 years. I've seen the most loving and caring of adult children reach the end of their ropes because they move in a demented, elderly parent(s) and had the load of their care and needs put on them. This creates the perfect conditions for elder abuse. Please consider placement before your situation gets to this point. You may think that it's impossible because you love your mom so much, but believe me it happens and people don't even realize.

She is a whole different person. Her brain is broken. She is incapable of being the same and never will be. You promised not to “put her in a home.” Present circumstances may have rendered that promise invalid. A care facility may be the place where she could be given the best care, so you should look at some and rethink the whole thing. Once a dementia patient gets to this point, you learn a lot, specifically that the care they need is way beyond your capabilities. Read and heed the posts here, and good luck.

My mom is with myself and my hubby also. Check for UTI? Did you start any mew medications, like benzodiazepines? They absolutely unhinged my mother in Oct and uhm, she's not 100% "back" yet. (might not come back to where she was at, idk. She sundowns very consistently now. Before this we just figured it was the whole being deoxygenated COPD thing as to why she didn't remember eating meals, etc, cause if you run out of breath eating you're not going to remember very much, I thought.)

Melatonin can help, allegedly. I started giving it to my mom and the hallucinations seemed to have stopped but I think I jynxed myself writing this because she stayed up like 3hrs later than normal and kept asking where the other people were and who is "in charge of this thing" tonight. This thing is the fact that she keeps ending up in other apartments and some of her shit is in it, obviously, and how did they get her things, and we need to pack it to bring it back home. (Home is this apartment.)

Sometimes I am three different people. WEll, there's me, the second me who has two kids, and then the third person who only has my name and is evil. Are you sure she is not seeing an evil angry version of you in her head? If I yell at my mom, she "realizes" I am the evil person who is FAKING being her daughter.

I also avoid anticholinergic meds now. We'd been on elavil, I'm on it all the time and now I'm uh TERRIFED. I don't have any kids. God help me as to what nursing home my complaining whingy annoying butt ends up in.

https://www.goodrx.com/classes/anticholinergics/anticholinergic-drugs-medications

Anyway my mom's world-view is pretty static and I've learned the ins and outs of it pretty quickly. The days she decides she doesn't trust me and I am not me... ugh, the last one wasn't good and I am lucky she is on hospice as I was able to get a hospice nurse to come over and assist. But... yeah. :(

I wish I could help more. But, imagine if your mother suddenly found herself in a strange place, a a person who INSISTS that she is her daughter and that they are in the same place is trying to give her drugs. How would she react? A lot of ppl say "They have no control over what they say". I don't believe that at all. What I DO BELIEVE is "They have no control of what they are experiencing". That is far more accurate. If you've never seen how your mom would fight with a dangerous stranger or an enemy, this could just be how she is acting at the moment.

But really I truly know how alone it feels to be dealing with this. I also made "the promise". I know already though from my mom's own words that if she becomes unmanageable, I am to do what needs doing. (ie a nursing home of the appropriate type).

Paranoid thinking is common with dementia. Teepa Snow has some great strategies for dementia care. Do some searches online especially look for the videos.

Sadly, dementia progresses.
So caregivers must adapt.
Hire more help in-home, until such time it is not enough. Then placement in a staffed residence becomes something to consider.

If you want to keep her at home and you have some funds available, consider day care a couple days each week to help you recharge your batteries. My neighbor has behaviorable issues but the daycare is handling it. Check with your local council on aging. In my area, we can get up to 1,700 each year.
DO speak to her doctor to re examine and see a specialist in an attempt to medicate.

I would look into placing her. I know you promised not to. Many, many people make that same promise and think they will be able able to somehow manage it. You can’t. It’s impossible without losing yourself in the process. I “promised” my father the same thing, but I was well aware that I would have to break that promise at some point when his care needs surpassed my abilities.

Moved my 96 year old mother from California to Minnesota in April.
it is now winter. She refuses to wear a coat, socks, closed toed shoes or long pants. I have bought her all of the above. Also refuses to wear her hearing aids. I remind her before we go out, refuses. I just let her go. She is outside for only a moment and then gets in the car. She is so stubborn that she has quit complaining about the cold. She knows exactly what she is doing. I can’t wrestle her down and make her get dressed appropriately.
One of the residents in her facility told her she looked like she was ready for summer, that made her mad.
I guess I have to choose my battles like we all do.

I've been in your boat. My once polite, respectful, caring mom, turned into someone else when Alzheimer's hit. She became, like your mom, distrusting, paranoid, and hurtful. I had to remind myself that it was the disease talking, and not really "her." Once, we had gone out to a fast food place for breakfast, and she commented how good the coffee was, but when we got home (with her to-go cup of coffee), she was convinced that the manager had poisoned her coffee. No amount of reasoning would work with her, so I poured the coffee into one of my cups, and my mom thought it was delicious. Ironically, a colleague faced a similar situation. I even wrote a book about Hubby and I taking care of my mom during this 5 year Alzheimer's journey called, "My Mother Has Alzheimer's and My Dog Has Tapeworms: A Caregiver's Tale." I thought of the title when I was driving home from work 1 day, and I realized that my once broad life was reduced to the pressing health concerns of my mom and dog. I agree with the advice of other people who posted, about checking for a UTI, seeing a neurologist and/or geriatric psychiatrist, etc. I had to learn that this behavior change was quite common with Alzheimer's. I didn't know that until we were faced with it. It was a learning experience for all of us. Best of luck.

From what I have learned and experienced, personality changes are one of the symptoms of dementia.

It can be shocking and upsetting to deal with.

My mother has always been immature and emotionally volatile. A screamer. The dementia has made it worse.

It’s the dementia progressing. My dad had vascular dementia. All his life he was volatile and bad tempered. My parents divorced when I was very young due to this. Over the years he mellowed out and for the most part we had a decent relationship. When his dementia began he sort of reverted back to being hard to deal with, finally he came to live with me, which I was sort of scared would be awful, but as the dementia kept progressing he got nicer and sweeter and would say the most endearing things to me. So dementia can definitely change the personality!

You are taking 'her changing brain chemistry' personally, as if she is behaving like this 'on purpose.' Yes - regardless - it hurts.

* When you cease expecting her to be the mother you knew and accept the person / mother she is now, you will give yourself some 'compassion / space' to process the interactions - and how you internalize the interactions.

* You need to prepare yourself mentally / psychologically / emotionally to 'go straight to compassion' for HER when she responds to you as she does. Do not go to "I'm hurt." Understand it isn't her - it is her changing brain.

* Do allow yourself to grieve. This is a grieving time. Turn your hurt to undertanding and feeling that you are grieving the loss of your mother as you knew her. Yes, she is a completely different person.

* With mental training, you WILL shift your thoughts/feelings from hurt (your feelings) to compassion (for how she feels). We never really know what is going on in her brain or how she processes information / sensory stimuli coming at her.
- Do google TEEPA SNOW and learn about how dementia affects a person's brain and how a loved one can relate / heal when these changes occur.

* And give yourself lots of hugs and get a lot of support through all this. It is heart wrenching. Gena / Touch Matters

Sadly, yes, these changes in a dementia patient can be expected and, possibly worse as they decline.

You may have " promised" one thing but, please be open to having to possibly reconsider for the safety and we'll being of both your mother and you.

You are her daughter; family members are daily tossed into caregiver roles that no one is prepared for. Do not feel guilty about consideration of other care options. Speak with her PCP. Are you getting any home care support services with her now? Call a local hospice of your choice or get referral from physician and, have your mother assessed for hospice appropriateness. It sounds like she may qualify and, if so, that will give you professional help in the home and support guidance for steps going forward; including provided hospice " respite" stay out of the home periodically so that you and family can have a break.

Don't grieve for what you've lost, be thankful for what you've had. You've had the best of her for 19 years. After reading hundreds (or more) of postings here, I'd say you have been most fortunate.

Sounds like you made promises that need to be reversed, based on your new understanding of this disease. A Geriatric Psychiatrist can help both of you cope with this horrible disease.

I know how you feel, we had both parents to care for and a sister inlaw who is a nurse tried to get away from caring for them or even telling us that they had dementia or alzheimers. We had to find out on our own, why they were acting strange and doing strange things. We tried not to tell them what to do cause they wouldnt listen and all they say is dont tell me what to do. We just let them live their life the way they wanted to but, would undo the wrongs they did without them knowing. It is hard but, we have to endure and if it gets harder then the doctor can step in and let you know the next steps.

We have found great relief for my husband with CBD gummies. We have been giving him ½ gummy 4 times per day and it has been astounding how much it has comforted him. There is no TCH (the hallucinogenic portion of pot) in the medicinal brand that we use.

He was suffering from terrible anxiety and agitation regarding missing "stuff". He couldn't describe what it was but he was tortured since it was terribly important for him to find it. The few times I have been late giving him a dose the feelings started coming back but he relaxed again and could be distracted in about ½ hour after receiving it.

We have not noticed any side effects and he is not sedated. I have also noticed that he is less compulsive about tiny things that used to trouble him.

We started with the minimum dosage and found such relief that we haven't needed to go to larger amounts in the month we have been using it.

There are different stages of dementia and as it progresses also additional and new behaviors. It is not her in control but the brain. I suggest you read as much as possible of the stages and changes for each so you are aware of them when they occur. They are not the same person they were especially as this horrible disease progresses. Enjoy the lucid moments and don’t assume they will last. I have been them and each person is different but it is helpful to read as much as you can and the Alzheimer’s website is awesome. My husband is in final stages under hospice within 3 years of this disease. Stay strong and take nothing personal.

My wife is like your mom now.52 yrs she has been losing her old nice OK personally. .
Heyes the catch when grands are around she plays nice when with me she scolls why?
Makes me feel she chooses to unload on me
If then control can be had.
Ive seen this in homes
Control is not dead
Does your mom also chose?
Im sorry for you mom .
I know your pain
For me it's a slow grief
My lo has leftme

mladylake: Something seems amiss since you state that your mother is refusing "to pee." That being said has to warrant a trip to the emergency room since a human body cannot store up urine. Nineteen years is a very long time for an individual to suffer from Alzheimer's. As you stated that you "don't want to put her in a home" (such as memory care), then be prepared to study the disease by reading such publications or books such as 'The 36 Hour Day.'

Prepare yourself for the progression of this terrible disease. The behavior will change in your LO and you won’t recognize them. They will say and do things that they’ve never done before. Be prepared or you will find yourself overwhelmed. It’s not them but their disease that’s making them change into a totally different person. Please read up on this disease and the behavior changes.

Please get her a doctor's appointment. Many times an urinary tract infection can cause irritable and irrational behavior. If she doesn't have an infection or other physical ailment, she probably is having increased anxiety as the world becomes more confusing for her. A mild medication can help to calm her so she will be easier to help,

Apple cider vinegar (acv)will wipe out a urinary tract infection(uti). Either slowly a couple tablespoons a day, for a few days or fully at once, using 1/4 or 1/3 cup. If its not a UTI, drinking acv won't hurt. Don't guve it straight. Could burn their mouth. I hid my Mom's in a very sweet juice. Didn't even tell her. You don't want to try and bargain with them. It doesn't work. Made it sour sweet like OJ. UTIs are an ongoing battle at that age. Clearing up a uti sonetines clears up the dementia, some or all!

For the dementia, I am pasting here a great note I found in this group. It is a wonderful tool. I went by something like this with my Mom. Same author. Wonderful, and works! Also gives them a beautiful quality of life.

Dementia and/or dementia-like behavior can be extremely difficult & frustrating to deal with, that's for CERTAIN! It's important for you to realize that DH is now limited in what he's capable of doing & is not intentionally trying to act like a child. He may not get much worse than this, nobody can say.

I suggest you read this 33 page booklet (which is a free download) which has THE best information ever about managing dementia and what to expect with an elder who's been diagnosed with it.

Understanding the Dementia Experience, by Jennifer Ghent-Fuller 
https://www.smashwords.com/books/view/210580

Jennifer is a nurse who worked for many years as an educator and counsellor for people with dementia and their families, as well as others in caring roles. She addresses the emotional and grief issues in the contexts in which they arise for families living with dementia.

The full copy of her book is available here:
https://www.amazon.com/Thoughtful-Dementia-Care-Understanding-Experience/dp/B09WN439CC/ref=sr_1_2?crid=2E7WWE9X5UFXR&keywords=jennifer+ghent+fuller+books&qid=1657468364&sprefix=jennifer+ghent%2Caps%2C631&sr=8-2

She also has published a workbook entitled, “It Isn’t Common Sense: Interacting with People Who Have Memory Loss Due to Dementia.”

https://www.amazon.com/Isnt-Common-Sense-Interacting-Dementia/dp/1481995995/ref=sr_1_4?crid=2E7WWE9X5UFXR&keywords=jennifer+ghent+fuller+books&qid=1657468655&sprefix=jennifer+ghent%2Caps%2C631&sr=8-4

Here is a list of useful tips from her e-book I found to be excellent:

The “Dont's”
· Do not reason and argue
· Do not demand that they reason or problem-solve
· Do not demand that they remember
· Do not demand that they get their facts straight
· Do not correct their ideas or scold them
· Do not reorient them
· Do not think that they are being uncooperative on purpose
· Do not think that they really do remember, but are pretending not to
· Do not use a “bossy” dictatorial attitude in care
· Do not act with impatience

The Do's
· Enter into their frame of reality, or their 'world'
· Be aware of their mood or state of mind
· Use few words and simple phrases
· OR use no words, just friendly gestures and simple motions
· Do everything slowly
· Approach from the front
· Wait for a slow response
· Constantly reassure them that everything is 'OK'
· Keep people with dementia comfortable 'in the moment' - every moment
· Maximize use of remaining abilities
· Limit TV or radio programs which they may feel are frighteningly real
· Maintain privacy
· Provide a safe physical environment

Language Needs
· Use short words
· Use clear and simple sentences
· Speak slowly and calmly
· Questions should ask for a “yes” or “no” answer
· Talk about one thing at a time
· Talk about concrete things; not abstract ideas
· Use common phrases
· Always say what you are doing
· If they repeat their question, repeat your answer as you did the first time · Give them a longer time to process information
· Wait patiently for a response
· Be accepting of inappropriate answers and nonsense words
· Speak softly, soothingly and gently

Care Needs
· Recognize that receiving personal care feels intrusive
· Reassure with your tone and manner
· Do one thing at a time
· Talk through the care “play-by-

My dad has dementia. He is horrible!! Makes up wild stories! Thinks we are giving him drugs; curses; threatens me & my husband. He lives in an Assisted Living, and he has cursed the directors. It. Is. Awful!

Look up Dr. Natali on YouTube. She has tons of videos etc for “Dementia Careblazers” that are extremely helpful. Another person to look up is Teepa Snow. You can’t change your Moms behavior but you can approach it from a different angle that will make a world of difference! Hopefully you can learn tools that will make this journey just a little easier.

I don't think the OP has been back, has she? It's frustrating, because I want to know what she means when she says that her mother "refuses to pee" as an example of changed behaviour over the last four months.

Peeing over the course of, let's say, 24 hours isn't really a choice - it must be happening, in fact, because if it weren't she'd already have become extremely ill - so I don't understand what is happening. Is mother declining to get up and go to the bathroom? Being escorted there on a schedule, but then sitting on the loo and stubbornly holding back? Self-limiting fluid intake to avoid the need to go?

I suppose at least this highlights how important it is to stand back and observe what is really bothering the person before you attempt to get her to do something.