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I have been my mom's caregiver for 19 years. We have always been very close and I have been blessed to have had a very loving and trusting relationship with her. Here lately, within the past four months though it has gotten very difficult. She has refused to pee, (many tests have shown it is mental and not physical) she is accusing me of trying to poison her with her medications and water. She has gotten to where she will lie to me about stupid things and has just been very difficult all around.



This is not like her at all. She has been suffering from dementia for 19 years. Until the past four months, she has been very active and engaging and a happy person. I cannot lie this really hurts. It is really getting to where I cannot do this alone anymore. My husband and son work, so mainly it is just me with her. She lives with us and I prefer it that way so I know that she is cared for but I do not know how to handle this new behavior. Any suggestions would be great. I do not want to put her in a home and I promised her I would not. Is this behavior a normal progression? I am open to suggestions. I have never seen this side of her before. She was a nurse and always loving and caring my whole life. Now it is like she is a completely different person.

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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.
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Reply to lealonnie1
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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.
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Reply to BurntCaregiver
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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.
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Reply to cxmoody
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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.
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Reply to Beatty
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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.
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Reply to Fawnby
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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.
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Reply to 97yroldmom
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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).
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Reply to Caldinea
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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...........
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Reply to lealonnie1
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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.
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Reply to MACinCT
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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
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BurntCaregiver Nov 28, 2022
@Gena

There is such a thing as Compassion Fatigue. It's when a caregiver can't do it anymore. The OP has been dealing with her mother's dementia for 19 years. Enough is enough. It gets to the point where the caregiver can't keep the hurt from hurting them. All the Teepa Snow videos in the world aren't going to do a thing for a person when it's all on them 24/7 with no respite and help.
People need to bring in outside hired help or even consider placement.
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