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My mom has just received a dementia diagnosis. Goes for an MRI on Sunday to learn more about type and severity. This has been coming for a couple/few years. My guess is mild to moderate severity, probably ALZ. She's still OK alone and can navigate her life in our house pretty well. But has TONS of issues too. The conversations are often verrrry strange, not surprisingly.

She is also in PT for a outer hip/glute pain and trouble walking. PT is coming to the house twice a week and an aide another 2 days to help her do her exercises since she doesn't do them on her own. The original evaluation said that she has weak muscles and needs to do PT to strengthen them to get rid of the pain. That she'd have to work her way out of the pain. Makes sense to me. But mom does not like to do any work. She would love to be waited on, etc. Not happening in my house.

But OMG the complaining!!! Wants to know when all these people are going to stop coming to the house. I tell her, well you have weak muscles and pain so you need PT so not for quite awhile. She does very little during the day. Sometimes a little light reading. Sometimes folding laundry. Mostly watching TV and moving her papers around. So why is it such an imposition for her to spend a half hour during PT???

Then today she told me that she wants to stop all of it after our vacation 3 weeks from now. I told her she'd end up in a wheelchair and is that OK with her. At this point she just shuts down. I'm so frustrated that she does not want to do anything to help her situation.

Complains about incontinence issues. But refused to go to two appointments in the past. It's gotten bad enough that she's asked to go and I booked a appt and she IS going, if I have to drag her to the car.

Complains about being tired all the time. Yup. Diagnosed with severe sleep apnea. So she doesn't get good sleep, ever. But could not or would not use the CPAP. I helped her a lot and got her set up every night but most nights she'd take the mask off after a short amount of time and not be able to explain why the next morning. I just tell her that she has severe sleep apnea and you're going to be tired every day.

I know with dementia that these things are magnified. But she was like this before. She always thought that waiting to see how she felt tomorrow was a good plan. I am soo not like that and it just frustrates the heck out of me. She just let old wash over her and did not fight it. Now I'm feeling very much like I'm not doing more for you since you refuse to do anything to help yourself. Don't do PT and can do less? I don't want to do more to fill in the gap. So, I'll be hiring someone (with her money, of course) to do the things that she can no longer do. First hired a cleaning lady since she couldn't keep her room and bathroom clean or change her sheets. Now hiring an aide to help her do exercises that she won't do alone. I'm sure there will be more soon.

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I have similar things with my dad. He’s now pretty much in bed all day because he finds it hard to stand and walk even with zimmer,
a lengthy journey of rehab, home, hospital, respite over 16 weeks. Currently in respite and not liking it one bit, but mum frazzled and frankly scared after the last seizure,
his carer said he needs stimulation, so I totally agree with Helen on that lack of use of body and mind is speeding up any dementia (my dad is waiting for an mri to determine)
he’s registered blind, but can still hear. Won’t have the radio on won’t have the tv on. I left and he broke down, it is the hardest time/experience for them and for us, none of us wants to see any living being suffer, yet if them themselves refuse to do anything what do we do. I’ve never felt so helpless
he got tired doing his physio, fed up with drinking to flush out a UTI and keep his kidneys going. Gigabees post reasonates so much…. My mum bless her buries her head (she drives me nuts but I love her)
we try everything we can and we keep trying. None of us went into this willingly so we should get all the help we can: keep getting the help in againx and I wish you all well xxx
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Moving to a new place, near the care facility, will force both of you into a new situation. Talk with the social worker and see where you can live near by. Or, sister can change everything if she volunteers to take her, right?
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'It's amazing how suggesting compassion gets slammed.'

MJ, I don't get the impression that the OP and most of us here are not showing compassion. We are just worn out by trying to do our best for people who will not do - and in some cases have never done - their best for themselves, for whatever reasons. In many cases, the lack of use of their brain and body may well have contributed to the dementia that now makes their life even harder, which is in no way our fault. If we didn't care about them and want to help, we wouldn't be on this forum trying to obtain a bit of moral support for a long-term problem for which we have no training and maybe not enough mental and physical strength.
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HI, you asked about other incentives or rewards. Here's a suggestion. Turn the TV off and take away the remote. For every 15 minutes of doing exercises, you earn 1 hour of TV time. When the weather is nice, wheel her outside and do some stretching exercises with her. Seated exercises are pretty gentle. You might be able to find some old You Tubes with Sit and Be Fit exercises. How about a pet - like a senior cat that could give her something to care for? Live for? Just make sure the animal is not mistreated in anyway. If it just means more work for you, forget it. Walking to the mailbox is always good, if that is possible. You can send a card or some little treat in the mail to make it fun to see what is there. Just suggestions. Take care of yourself and remember you can't control another person, just what you do. Perhaps the less interested you are in what she is doing, the more she will be. Sometimes its a backward way of getting attention. Good luck.
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MargaretMcKen Feb 2022
I started thinking about more incentives, using the TV remote. Put it in the mail box? Go get it, Ma! Play hide-and-seek with it? Give her a list of 3 places to check, perhaps. Or use a voucher for something she likes (less messy than hiding food). You can do ‘reach down high, reach down low). It could even be quite a good game...
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'I can identify with everything you're going through, though my mom is at a much lesser degree of dementia... I resent it - she's been this way for a few decades but it's only been in the last few years, along with her cognitive decline, that I have really noticed that I was doing way too much for her and that just helped her downslide. If I'd only had a crystal ball, I would have played my hand ... differently.'

Againx100, this is exactly my situation too. My mother (87 and with no serious health conditions) resents and rejects almost all attempts to help her make more of her life and complains about hating the AL where she lives, saying she is just 'sitting waiting to go'. We have tried physiotherapists to help with the pain of weakening underused muscles, going to the doctor for tests for her early dementia, hiring a cleaner and carers and taking her food to tempt her to eat. We used to take her out, but she found fault with whatever we did. She hates being stuck in her apartment (she gave up walking owing to vertigo although there is nothing physiologically wrong with her legs), but when we went to take her to our home for tea on Saturday instead of lunch, she wouldn't come.

This relentless negativity over five years, added to our historically poor relationship (she seems to having narcissistic traits) has resulted in my being on anxiety medication and fearing the future. My husband is 65 next month, with health concerns of his own - what if Mum lives to 92, like my grandmother?
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Glad you vented. Good to hire a Caregiver, etc. As you all tell me: continue to enforce boundaries for you mental & physical well being. Get the help in. Your Mom's attitude is carbon copy of my Mom's re: life & movement. They might be separated at birth! Where is the gratitude for life? I just love seeing 75+ yr olds out walking...those who place value on the day & days to come.. who have positive attitudes.. You are beyond generous with her in your home! How many years has she been there? How old is she?
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againx100 Feb 2022
Thanks for responding. She's 79 and been here over 6 years. My sister thinks I'm crazy! Definitely a few of these moms separated at birth! I have always been very jealous of the older people I see that DO care about their health and actively keep busy and fit. Positive attitudes? Wouldn't that be nice? My mom has been old for her age for at least 10 or 15 years. It's just plain sad. And now, with dementia, it's just going to get worse.
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Don't be a sponge.........don't absorb all the complaints thrown your way. Perhaps getting a social worker to place her will permit you to visit her, rather than providing exhausting care-taking duties.

After reading so much on this forum, I've come to understand that sacrificing one's sanity is not healthy for anyone; especially the one who forfeits her happiness trying to make someone else happy. Old age, physical pain/limitations and the dreary darkness of mental illness is NOT a happy place for anyone.
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againx100 Feb 2022
I like that "don't be a sponge". I try to let her negativity bounce off of me but I'm sure I do take too much of it in. I know I will have to have her placed at some point. Could be in a few months, could be a year. But the clock is running. I mentioned AL a month or two ago and she was NOT happy about it. I had hoped that maybe, just maybe, she would think it was a good idea and willingly go. No such luck.
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I am so sorry about the dementia diagnosis for your mom. It's not easy. That is good you are encouraging her to do as much as she possibly can for herself- the less she does, the less she will be able to do. That is also great you are getting her an aide for her exercises and also hiring people to help with her chores.
You said she shuts down after you mention she will end up in a wheelchair. Does she ever have any thoughts about that at all?
She sounds a lot like how my mom is- won't do anything about improving her situation- and because of it she is in a wheelchair. Complains about her knees, etc. but has not nor will consider knee replacement. Does not want to follow through with her exercises that PT gave her. So here we are. I may hire an aide for that myself. She will listen to them- she gets very angry with me when I try to get her to exercise and even when I get her to do things herself sometimes. My thought is maybe she's at the point where she just wants to be left alone and do nothing. 🤷‍♀️ Maybe your mom might feel that way as well? It is very frustrating.
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againx100 Feb 2022
Thanks for responding. Our mom's sound like sisters. Where does your mom live? My mom did not want to get her knees done either but I STRONGLY encouraged it and took her to appointments, etc. You're singing my song - she listens to "professionals" but gets angry and cranky and the excuses start flowing when it's me. Soooo frustrating. That's why I want to stay out of it. I can't try to help her anymore - too many bad experiences in our past to make it palatable.
My mom has been at the point for a long time where she wants to be left alone and do nothing. But what a horrible choice! I would feel like a horrible caregiver if I let her take that downward spiral path. Especially now that she has dementia. Of course, I know at some point, I will have to give up and let her do nothing. I will resent it, but it's coming.
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againx100: I am sorry that your mother has received a dementia dx. It's good that you hired a cleaning lady and an aide for the exercises. Perhaps she will be more inclined to care about her health because, after all, she is paying for it as she should (good on your part to know that).
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againx100 Feb 2022
Thank for your sympathy. We all know dementia sucks. Big time. I learned from this site NOT to pay for anything - it's for her and she has money so, that's what it's for. I doubt spending money will motivate her - she'd probably want to fire them instead! LOL.
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She appears to have a loose association between cause and effect. It is easy to slip into procrastination... and that appears to be her coping style for a long, long time.
It might be best to take a more relaxed approach to her health and lifestyle decisions:

1 - Is the issue "life and death"?
If so, then make the decision that leans heavily to "life"?

2 - Is the issue one that leads to disability?
Help her to see the long term effects of options. Try to narrow options down to 2-3 choices and let her choose the option to take.

3- Is the issue one that causes "hurt to others"?
Make the decision that is kindest for all involved.
Explain to her that "we always need to be kind to others, even when it might be difficult for ourselves".

4 - Is the issue about "lifestyle"?
As long as it doesn't cause safety or health problems, let her decide.
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againx100 Feb 2022
Yes, her connection between cause and effect is so loose to be pretty much non-existent. And yes, she has always been a procrastinator.

I'm a type A person so taking a more relaxed approach will be a challenge. But life is already a challenge, so maybe I should tackle it. Maybe when we get to the other side of this PT problem and she has her strength and mobility back (or tries to tell me how she wants to quit), I can tell her more about where this poor choice is going to lead her. I did tell her she was going to end up in a wheelchair. What I didn't tell her was that that would also mean a nursing home. I know she does NOT want that.
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It sounds like mother doesn’t have much incentive to do things that she should. Are there any non-essentials that are treats? Could they be ‘prizes’ for doing it right?
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againx100 Feb 2022
You're right - no incentive at all! I am having the aide play a game (which mom like to do) after PT as a "reward". Can you think of any other kind of examples that I could try?
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In reading some of the answers here, I realize that I am not alone in wanting my husband, who is 91, to do more for himself. However, with some therapy, I have come to see that a good part of my frustration and anger when he doesn't remember to do something he commits to is actually about my frustration but also my fear of his decline and the process of watching it happen. I cannot control it. I can hardly influence it but accepting that what I am looking at and experiencing is more about the diseases than his choice is somewhat helpful. Of course, there is a little projection going on too, like who will be around to help me when I may need the help. Hopefully, the knowledge of what I am feeling and confronted with will make this process easier and cause me to plan what is necessary. Each of us shares a lot, but our journey is uniquely ours.
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againx100 Feb 2022
It's nice to realize that we are not alone in whatever issues we are dealing with. I can see how much harder this would be to go through with a spouse. So sorry. I can also see a good point that our frustration and anger if also really fear and lack of control over the situation. Every new bad thing that happens leaves me wondering "what's next???", knowing that it's not going to be a good thing.
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I felt the same with my mum - sitting waiting for everyone to do for her (i.e. me). I’m working harder for your life than you are. Just moved her into Extra Care Housing 10 days ago - I am cruel, wicked, evil, conspired with my brother because he would never do anything so wicked. 10 days later she is miserable
(I can’t believe I’m in an old people’s home - she has a private flat with access to communal areas at 84), but happy - ‘it’s lovely here, they are wonderful, there are lovely people to talk to, we have fun’. It was only whilst packing her up and clearing her old flat that I realised she must have had dementia for YEARS! Officially diagnosed with mild dementia 18 months ago, but researching it, it seems she must have been suffering WAY before then. It’s been sad to see fully how many things have been completely forgotten about. I had to ask her where toothpaste and shampoo were, her underwear had to be binned, she was using a towel I remember her having when I was a teenager. Everything has gone to pot. She has gone downhill rapidly and I was saying the same as you just 5 months ago. She ‘washes up’ her pots, but they are dirty when she’s done it, she’s forgotten she needs a haircut - no longer wears makeup - just lost interest.
Now she’s moved she feels safe and has support to shower, dress, eat, medication, laundry - everything I was feeling exhausted and resentful about. Get the professionals in and let them handle the care - they are the experts. Then you will be able to have a daughter/mother relationship again.
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againx100 Feb 2022
I hope your mom will soon get over you being such a cruel, evil person as you must be to have put her in an appropriate facility for her issues. I hope you know I am being sarcastically supportive and totally on your side.

I think they often have dementia longer than we suspect. They can cover it up pretty well. I can imagine my mom's early dementia being soooo much worse in 18 months. She's gone downhill a lot in 6 months. It's quite a rollercoaster.

I love having some helpers. Mom doesn't really love it. She's good with them when they're here (people pleaser) but then asks me "when are all these people going to stop coming here??". Umm, basically never.

Have you been able to resurrect a "normal" mother/daughter relationship with her? I am wondering if it is possible, at least for me, after all the hard times living together with all the issues that are raised as they decline?

Good luck.
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Hiring all the help she needs might just be the best solution. Her avoidance of diagnoses and treatments sound more deep seated than just dementia-related. She will continue to complain to get sympathy and attention, and she will continue to avoid seeking medical advice or treatment out of fear and denial. She may complain hoping her symptoms can be explained away. When she complains, you can remind her that she can do something about her problems or not. If problems worry her enough to seek help, you can drive her to her appt but you are not a doctor and cannot fix them yourself. You can tell her that if she chooses not to get further medical help, you do not want to hear about her problems.
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againx100 Feb 2022
Thanks for responding. You are right that this is more than just dementia. Sometimes when she complains, I offer a solution. "Do you want to go to the doctor for that?" It's usually a no. After a few times, I have recently decided to just go ahead and get her an appointment and take her to it myself so she won't cancel it or just not go.

I have thought about telling her that if she's not going to go to the doctor and do something to fix whatever issue she's telling me about, then please don't bother telling me about it. Not sure if it would work and if it would shut down too much of her ability to tell me what's going on in case it's something new that actually needs to be addressed.
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One of the most difficult elements of caring for my 95 yo mother with advanced dementia is entering into her world. My mother also wants everything to be done for her while she puts forth no effort to help. She would be happy if I carried her around the house on my back and spoon fed her every bite and held her hand all night. It's like pulling a freight train with my teeth. She tells me to cancel her appointments (her physical therapist and weekly nurse visits) and I tell her "okay" but I don't. I'm not trying to get her to do anything that's impossible for her. I'm trying to give her proper care. I've been continually trying to coax her into a shower or eating or staying out of the bed during the day or doing a few exercises which ends up in conflict because she is super strong willed and I'm exhausted. I guess I haven't offered much help other than to let you know that you're not alone.
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againx100 Feb 2022
Sharing your story is helpful. I can identify with everything you're going through, though my mom is at a much lesser degree of dementia. My mom loves to be waited on. But she needs to do as much for herself as she can. Or she will just be able to do less and less. And I will have to do more and more. Well, I'll have to hire someone to do the more and more because I don't want to do more. I resent it - she's been this way for a few decades but it's only been in the last few years, I guess along with her cognitive decline, that I have really noticed that I was doing way too much for her and that just helped her downslide. If I'd only had a crystal ball, I would have played my hand so much differently.
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People with dementia lose the ability to think logically, they lose their memory, and they can lose the ability to walk (my mother "forgot" how to walk), and usually things get worse over time. My mother now has advanced dementia, and she is like an infant: she can't talk, she can't walk, she needs to be taken to the bathroom, she needs help dressing and showering, and she needs to be fed. If you will not be able to handle this, have a Plan B for her to live in a memory care unit where she can get the care she needs. Or you can have aides come in to help in your home. Sadly, dementia usually gets worse over time.
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againx100 Feb 2022
Thanks. You are right that they lose the ability to think logically. Seeing more than enough of that here. And memory loss. Yup got that too. I read that they typically lose short term memory first - boy is that true! But surprisingly, still remembers some short term things. Usually the ones you'd prefer she forget.

Sorry your mom forgot how to walk. That is pretty advanced and is just incredibly sad. I will not be able to handle that level, no doubt. As her condition declines, I expect to hire more in-home help until that gets too expensive and/or she just needs to much care and then transition to living in a facility appropriate for her issues at that time. I need to get in an app to the SNF down the street from us, a few miles.

It definitely gets worse over time. It's degenerative and untreatable. So cruel.
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I believe they go in stages of decline . My Dad doesn't want to do Much but read and watch Tv . He use to walk with me to get lunch but since the cold weather doesn't want to go outside . He did his 5 Months of Physical therapy from July to November . Once it warms up again I am going to get him Outside . My social worker says " no one Likes PT . " If you figure the brain is in decline so is the body . He is 85 . 2 years ago he was riding His Bicycle every where . This summer he had a fall and diagnosed with a small stroke . We Dealt with a Fall a Month . The last few months he has been good But doesn't want to go Outside due to the cold . Going to bring Him to the doctors and see if he can get some PT again . I Say " Be Gentle " Will he be able to go outside and walk to go get Lunch ? I Don't Know But he is comfortable, happy , content , warm, dry and fed . The brain has broken down and so has the body . His spirit is still there and that makes me smile .
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againx100 Feb 2022
Thanks for writing. I agree they go in stages of decline. Hope your dad can get back into PT and start agreeing to go outside soon.
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Switch from caring about her health to caring about her wellbeing.

Healthier but miserable and feeling driven and disapproved of is not how you want your mother to be.

Those aides who you've hired to encourage her exercises, how are they getting on with her? The coaxing/threatening/encouraging bit is their job, and that's what she's paying for (excellent decision on your part) - are they are doing it, do you think? If so, you should, if you look surreptitiously and discreetly without your mother's noticing you, begin to see the green shoots of returning motivation. Any sign?
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againx100 Feb 2022
Interesting concept. Trying to figure it out. Just curious - how would you define wellbeing? One way I see it, goes like this - if she's less healthy, she's going to be in more pain and she's probably not going to be any happier. I'm sure there are other outcomes but that's the rut I'm in. I'm trying to do the right thing. I'm sure I'm making more than my share of mistakes. Like most of us, this IS my first rodeo.

The aides are getting along well with her. She likes them. She doesn't like doing her exercises but likes them. She's kind of a people pleaser and I think she likes the extra attention. If green shoots of motivation appear, it would be a miracle. She has never had any drive to take care of herself.
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Do you live in my house? I had to read this post twice because I thought I wrote it. I don't have any answers, just wanted to say you aren't alone.
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againx100 Feb 2022
So sorry you are living my life! LOL It's not easy but it is good to know we are not alone.
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Truly, I think the best thing you can do for mom AND for yourself is to learn as much as you possibly can about how the mind of an elder with dementia works. THEN you will understand more where mom is coming from. You still won't agree with her about the PT (and I know that feeling, too, b/c my mother fought me hard on the PT for years) but you'll gain insight into many things you never realized before.

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

She also has published a workbook entitled, “It Isn’t Common Sense: Interacting with People Who Have Memory Loss Due to Dementia.” For people to understand that reality and context as perceived and experienced by a person with dementia, is altered by the dementia; and, that their reality and context is continuously changing as the dementia progresses, requires learning and an attitude shift; it is not ‘common sense.’


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- 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.

Another good book is Living in the Labyrinth: A Personal Journey Through the Maze of Alzheimer's, by Diana Friel McGowin. Learn all you can about AD/dementia b/c knowledge is power!

Also plan for the future when you may no longer be able to handle mom at home & Memory Care may be your best bet.

GOOD LUCK!
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againx100 Feb 2022
Thanks lea. I am going to print that booklet. I've seen you post it before and I need to read and reread it. It'll be worth the paper and ink.

I do know of one really good MC in the area. My friend's dad was there and I helped her move him in and then out (when he ran out money). In your experience, do you think it would be reasonable for the progression to be from being at home with some aides and then go into memory care? And then I guess when her money runs out, she'd have to transition to a medicaid nursing home?

This reminds me that she is now older than both her parents were when they passed, 6 years older than my dad, and my dad's parents as well. Her mom's siblings lived to be a bit older than she is now, all with dementia as well. I always assumed my parents wouldn't live too long given their parents all dying in their mid 70s and that they didn't take good care of themselves. I am hoping to break the trend by taking as good care of myself as I know how. We'll see how that pans out! LOL
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Yes.... As babsjvd states, the repeated requests for PT... It gets a little crazy when the ONLY time she does the exercises at all (let alone doing the exercises correctly) is when a therapist is standing right there. If therapist blinks an eye, LO is doing her thing her way or not doing anything at all - except asking for more therapy. Constantly. And blaming other people for her current condition. In our case, a lot of the non compliance can be attributed to her overall condition having declined over the years to where she's now in a facility and there are a lot of things she legit cannot do. BUT, she was this way when she was independent as well. If no one's watching, she does her thing. If someone's right there babying her.... she's all smiles and "trying so hard" to make therapist/doctor/whatever person happy. Absolutely no point to it and with the cost of PT, there isn't any insurance plan that will cover it indefinitely anyway.
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againx100 Feb 2022
Thanks for your response. So familiar - putting on a big show for the PT people but not doing anything independently. That's why I've hired some aides to help her on the off days. She is so non-complaint. And with me, she's usually too tired or some other excuse. Surprisingly, she has actually done a few sessions with me (when I can force myself to ask since the refusals really frustrate me and sometimes I just can't bear to set myself up for it). Maybe her dementia is making less obstinate when I'm asking to help her and lead her through it?? That would be a lovely gift. I'm going to try to ask to help her with the reward of playing a game she like afterwards. Which is what I'm having the aides do. I think it's a nice reward and she likes it so....

My mom loves to be babied and coddled and is a people pleaser (except with yours truly). So having professionals work with her is the only way to keep her going.

When PT says she's done due to meeting goals and/or not making progress, I am hoping to get her into an Age in Motion class at the senior center, which is unfortunately a half hour drive from here, but the closest viable option that I know of. Maybe the classes at the Y are a teeny bit closer so I'll figure it out but she needs to be lead as she doesn't like it and will never exercise voluntarily.

Thanks again and good luck with your mom.
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I have gone thru the same exact thing

I wish I had quit trying. And that’s my advise to you. Quit trying, she won’t and you can’t do it for her.

Please read my response MJ1929.. I felt like all we ever did was argue and to what consequence. My mom went from independently living in a mobile home , to AL , then to a MC. She does nothing to help herself. But still asked the dr for PT 4 months ago.. I tell her she will end up in a nursing home, she does not care, and is lazy.

I know your frustration
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AlvaDeer Feb 2022
I would completely second your opinion. I am 80. Pain becomes more and more a "given". No matter what you do, because I walk at least a mile a day and I can and do do things to try to help. Yet the pain remains; the pain increases and now, gardening, getting down leaves always the question "What will help me get UP" again. OP says her Mom is 75 but an old 75. I am guessing she is closer to how I feel in terms of pain. I don't much complain of it, but I have no one "on me" about it, and I would resent it if I did, muttering below my breathe "just you wait".
Not for Sissies this whole thing of loss of one thing after another, mobility, joints, continence, mind. And when we have the mind being uncooperative as well?
I think Againx100 is moving into againx1000, and battling all of this? Well, think back to our parents battling US when we were in our teens. It just won't work, and the added frustration for everyone involved will be dreadful.
I too, can imagine the frustration. But not everything can be fixed.
I am kind of concerned about one single statement here and that is that the OP believes that all this can be "easily improved". I think there may be some magical thinking in that belief.
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Please be kinder. It IS going to get worse, and she'll become even less like you than she already is. You need to figure out how to handle that with compassion.

I see a lot of complaining in the post, so maybe you aren't as different as you think. 😉
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babsjvd Feb 2022
I understand AgainX100… she’s frustrated. Needed to vent a little…

I have gone thru the same exact thing. My mom continues to ask for PT .. has been repeatedly fired from it for non compliance. Same argument about doing the exercises , “mom Dr said if you don’t do the exercises you go backward “her reply .. “then I will just go backwards “ My mom quit walking to the dining room. Wants to be waited on. Now memory care is asking for a lift chair. Going down the road I strived , and argued over with my mom. I hate she doesn’t want to help herself, or is to lazy to.

I have now after years of this , decided I’m not going to argue about it anymore…. not moving her body, not putting her feet up as the skin is weeping from edema, not letting staff put on compression stockings, wearing her hearing aides so you can have a conversation, staff frustrated from screaming at her to communicate, not walking to dining room as her dr instructed, I too could go on and on…
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As you said, the Dementia will make the way she is worse. But don't disable her. It may not be that she doesn't want to clean, it could be she has forgotten how to. At 72, because of my back, its harder to make my bed. So DH helps. I had an aide tell me once Mom would not brush her teeth. I asked if the aide but the toothpaste on the brush and handed it to her. The answer was No. Maybe you need to give Mom a push. Buy those Swiffer dusters and have her use them. I have a little broom sweeper I use for quick cleaning. Really how dirty can a bedroom get.

Once a complainer always a complainer. They are called Debbie Downers. I had a friend like this. When she complained, I'd suggest a solution. Always a reason why the solution wouldn't work. One was an application for the Senior bus. She was under the age limit but disabled which they excepted. When she was complaining she couldn't find a ride, I asked what happen to the bus? She said she was turned down. I doubt that, she just never applied. Now if I had gotten her the application, had her fill it out, take it back and follow up on the progress she probably would have liked that. Sorry, my new slogan is "I am here to help people find the way, I am not here to be the way"
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againx100 Feb 2022
Thanks so much for responding! I unfortunately made the mistake, starting at least a decade ago, of disabling her (and my dad while he was still alive). UGH, major life regret. I did waaaay too much for them. I should have made them handle their own crap, brought on by being so passive about their health. I should not have been the solution, but I willingly did it. Learned my lesson but a little too late!

Her bedroom was getting problematic. She has a dustbuster and used it sometimes. Swiffer sweeper too. But she eats in her room and kept getting ants. YUCK. And couldn't change her sheets - well, technically could but would take a full day to do it. And her bathroom?? Let's just say I NEVER use it!!! So, a cleaning lady is a necessity!

LOL she is totally a Debbie Downer! I'll share that with my sister - she'll get a kick out of it too. Wow, I am stuck in the same thing you describe about your friend. I am always offering solutions to mom's complaints. But does she want to do any of them? Nope. And offers ridiculous excuses. Maddening. OK, she has dementia but it still drives me batty and has been going on for years.
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Going through this right now. My LO neglected her health and led a sedentary lifestyle for decades. Well, sedentary in terms of she WOULD get up and go to work where she would be in an upright position for 8-12 hours straight.... and then right back to the couch and then back and forth to the fridge and bathroom all evening long. These extremes could not have been good for her body. She was on the couch pretty much all day after retirement. She neglected her health in terms of she NEVER missed a Dr appt, but all she wanted was more pills. Pills for pain, pills for blood pressure, pills for cardiac issues, pills for things she probably didn't even have. Decided she was depressed and doctor wrote a script for that too. Abused food like I have never seen anyone do... and she is also type 2 diabetic. Obesity, afib, digestive issues (alternating constipation/diarrhea). Sleep apnea - probably for decades, but only recently diagnosed. Refusing cpap. Complaining about the meds that are supposed to relax her and help her WEAR the cpap - she said a family member (who has NO IDEA the totality of the situation) told her not to take that particular pill because it's "bad." I nearly killed myself trying to care for her at home and did have to place her in a NH. I feel I looked at all options prior to that. I have been very involved since then in terms of her being comfortable and feeling as good as possible - I've been her advocate through it all. But she wants more. Something else. Something "better." I told her we're at the end of new things to try. No option other than cpap for now and I made no bones about it that I will not be looking at other options - this is it. I've listened to constant complaints for 17 years (as others backed away or passed away) and a lot of it was due to her choices. Refusal to get up and move around. Refusal to eat better/healthier. No sense of cause and effect. Always blaming someone else or claiming someone told her that what she's doing is OK. Trust me, if you met this lady at any point in the past 60 years, you'd immediately know that no one told her that she's doing just fine and no changes are needed.
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JoAnn29 Feb 2022
I have a 32 yr old disabled nephew who should not weigh over 150 lbs (small in stature) because of his physical problems. He is orobably 300. I have not set foot in his apt since I got it all set up for him. He is lazy and a slob big time. I was on him constantly when he lived with Mom about keeping his part of the house clean. He will never live with me. Hygiene problems and being a slob are the main reasons. I actually get a tightening in my chest when I enter his apt. Most of his mess is just getting it to a trash can. A dumpster is right outside his apartment. At 72 I refuse to be on top of someone who can do.
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Cause and effect can be hard for those who don’t have dementia. Many people never seem to realize that their own decisions led them to where they are in life.
We used to have many posts where people complained that elders were living too long. How Doctors were extending their lives past the point they had any quality of life. The US has an average life expectancy of about 78 I think it is. Your mom at 75 would be near that. Perhaps she is tired.
The PT before a vacation sounds good. Hopefully she will have more energy and both of you will enjoy the break in routine. I think you are doing good to keep her active so she can have the best life possible. It is stressful watching our loved ones decline regardless of their age. Recently there was a post re an 87 yr old who didn’t want to go to the doctor for BP meds. Adult children as a group seem confused about what they want. Extend the life, don’t extend the life. Maybe againx100 you might find some benefit from reading “Being Mortal, Medicine and What Matters in the End” by Atul Gawande. There comes a point where a person might be ready to relax into old age and not feel compelled to fight it without it being called depression. How about reality? Since you know your mom has dementia, it might be a good time for you and mom to discuss Atul’s five questions. Or it may be later than you think.
Here is a link to an interview where he is discussing the questions he feels every elder deserves to discuss with their doctors and family.

https://www.nextavenue.org/atul-gawandes-5-questions-ask-lifes-end/

Your mom is lucky to have you.
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againx100 Feb 2022
Thank you for your response, support and kinds words. I'll check out that book. I do believe in quality vs quantity. Although I guess her quality of life pretty much sucks at this point. I will not be putting her on any dementia meds. Why would you want to live longer with dementia?? Yikes. It's a horrible disease.
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