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I think we should keep in mind that some of us are in shock with this development. It hasn't been that long since I knew. So I'm probably not perfect at it. But I'm working at it. I think the caregivers job is so difficult that we tend to focus on our pain rather than how hard life is for our once fully present loved one. It all sucks.
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smcbeth1, you are right: It all sucks.

My husband was diagnosed in 2003. He died in 2012. I have had a lot of time to work through the shock. I hope I didn't sound judgmental of your level of dementia-skill. We all start pretty ignorant and shocked. Hearing about the experiences of other caregivers can be very comforting and helpful -- and also scary.

I remember running around trying to convince my husband that he was home when he wanted to "go home" early in the disease. I'd say, "Remember this lamp we bought together at Dayton's?" "This is a wedding gift from your engineer buddy," etc. etc. and he'd agree with everything, and then want to go home! I could have handled that MUCH better if I understood more about dementia at that point. I got much more skillful at caregiving over the years, partly from learning from the experience of other caregivers as well as my own.

But we all start out mostly ignorant and in shock.

Now when my mother doesn't remember whether she has had breakfast or not five minutes after the server removes her plate I am not shocked or distressed at all. Sad, sure, but I take it in stride. That doesn't mean you should be able to this early in the journey.

Best wishes to you!
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AnitaG61: I disagree on Jude's use of the word, fantastic,.as it can also mean wonderful.
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Judesters: Fantastic can also mean wonderful and I certainly know that Alzheimer's and Dementia are ANYTHING BUT WONDERFUL. BLESS YOU!
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Hi HelpingHelen, welcome to Agingcare. We are here to support you with our own experience. You might want to read over the categories at the just before the place to ask questions shows and then read articles and community input about your issues. Please feel free to chime in on any thread or ask you own special questions.
Take care,
Carol
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Thank you so much MindingOurElders. I appreciate it more than you know.
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Thanks Anita, that is exactly what I meant. I am thankful that my friend's delusions are mostly pleasant and she isn't fearful. When she first started with the dementia she was saying people came into her room and beat her up and all kinds of horrible things. She seems to have gotten past that and is now in her safe fantasy world.
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Just the other day I opened a fortune cookie to find this message from the Universe, "Do not argue with a fool."

While I would never consider my MIL a fool, her dementia has certainly made her "foolish". It was a good message, and I keep it in a pocket to remind me!
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Thank you, Anita, for that last message. I feel so bad for my mom sometimes because the dementia has made her so "foolish" she can't seem to follow even the simplest of commands anymore. Tonight I told her to back up to her chair, and she started to go forward with her walker instead of backwards. "No, go backwards!" I told her, and she continued to go forwards! Poor thing. Sometimes when the phone rings instead of picking up the phone she'll pick up a bottled water next to her on the same table. I literally have to tell her to wipe her private area after she uses the restroom or she'll just place the T.P. in her Depends. Then I have to tell her to "throw the T.P. in the toilet...in back of her"...when she's done. So frustrating sometimes, and I can see how it is very easy to lose one's cool at times! So I thought your post was very appropriate about the message in the fortune cookie. Most of the time it just makes me feel a little sad and my heart is filled with compassion for her that she doesn't even know what a toilet is anymore! But there are times when I feel myself getting a little impatient with her and I have to keep myself in check.
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Sometimes I look at photos of my parents when they were young and competent. Then I remember how feeble my dad was the last 8 years of his life (died at 89). His mind was sharp as ever, but that made him more aware of his decline. My mother, on the other hand, is physically strong for her age (95 in December) but her mind has gone south and she is convinced that she is the only rational person in the family when we try to reason with her.

Either way, it is so hard....
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Imccarthy1,I do understand how frustrating it can be, as I'm caring for My Mum Who has Alzheimer's. I had to teach Myself how to deal with being a 24/7 Carer. I never command or boss, I just say We, We might take a shower this morning Mum ? when there's an immediate response NO I'm grand, and after 5 or 10 minutes, Mum will say I think I might have a shower this morning. When I look at My own Mother I can see Myself in 10/15 years time. Kindness works. When I'm preparing dinner and Mum is sitting near by in Her arm chair, I begin reciting poetry that Mum learned in School, and She joins in too, plus We sing songs together which Mum loves. I know My Mother is on Her final journey and I'm very determined to make this Our time together the happiest and most joyful time.
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Yes, it is so hard. My Mom does believe she is the only one who is correct in her mind. Good thought, do not argue with a fool.
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In the case of my surrogate dad, I wasn't really trained to spot the signs of dementia. Little did I know, he may of had developing dementia for quite a while before it became very obvious. I found myself always arguing with him and even correcting him. In this specific case, eventually realized not to lie to me since I just wouldn't buy it. If you stand your ground and don't buy into something that you know isn't true, they will eventually realize that you just don't buy it and they will move on to something else. It worked for me in my specific case.
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Folks, reason doesn't work with a baby and you wouldn't even try, right? You would diaper the child and not put it on the toilet until the child understood what a toilet is for.You also wouldn't ask the baby to move his own stroller in the correct direction. Dementia robs your loved ones of their reason. Logic and commands don't work, so stop using them. Unfortunately that means more work for you. And more Depends. Move a table near your Mom and let her eat where she is comfortable. Relax your attempts to keep life "normal." Use activities that make the person feel good and comfortable, as long as they are safe. Beware of loved ones eating non-food items. Dress them in comfortable, non-chafing, easy to wear clothing and don't leave them alone. Now you see why so many folks are in out of home placements. The staff is non-emotional and helpful at the level your loved nes need now. I agree. It sucks, it's hard, it's not much fun.
But once in a while you get a smile or a comment that makes your day!
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Johnjoe: So true-we do tend to "become" our parents in 10-15 years.
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Hello johnjoe! I thought I'd respond to your comment. If I posed the suggestion of getting a bath to my mom as a question the way you did, my mom probably wouldn't get a bath! Putthatknifeaway, I have to give her verbal cues for everything from toileting to swallowing her pills because she doesn't seem to have the motor planning skills or cognition to know how to do it herself anymore. That is not commanding her like a baby to push her own stroller (which we don't generally expect babies to do)! That is trying to help her go through the motion of normal, routine everyday tasks with step-by-step verbal cueing. If I don't, then she ends up trying to sit down in her chair when she is still a foot away and she is unsafe and at risk of falling! Or if I don't give her step-by-step verbal cueing to take her pills (sip of water, swallow, GULP!) she can't seem to get them down! That's not using logic, that's called therapeutic intervention and is used in therapy all the time! I know, because I am a therapist and have worked in skilled nursing facilities, ALF's, ILF's and have provided home health OT for many years!

Now mind you, this is coming from someone with years of experience in dealing with Alzheimer's and dementia! Suddenly I am thrown into the full-time caregiving situation with my mother! I'm just saying that even for someone like me with years of experience, it's not easy! Therefore, if I find myself getting frustrated and impatient and having to keep my emotions in check, I can only imagine just how frustrating it can be for someone that doesn't have that experience. What's so frustrating is this is my own mother, for Pete's sake! And all of a sudden here I am having to tell her how to wipe her own bottom! And I won't stop providing her with verbal cues to do that. She is probably about 50-75% incontinent at this point and is already wearing Depends 100% percent of the time. But to me it would be even more humiliating for her to have accidents all the time and be dependent on someone else to clean it up 100% of the time! Eventually it's going to get to that point, I know, but at least she gets to keep her dignity the other 25-50% of the time.
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Is a Memory Care Facility covered by Medicare? Are the same time parameters in place? How do i get a proper / accurate diagnosis and prognosis? Mom's primary care physician is quite disinterested, and not even willing to point me in the right direction [nor return phone calls]. It amazes me that so many of you have such a kind spirit and attitude to reach out to guide others, and give solace to your loved ones. Mom's starting to physically remove food from her mouth [she won't eat on her own - i have to spoon feed her pudding, or she won't eat anything at all, and makes horrible faces and sounds while the pudding or jello is in her mouth]. No one at the SNF will tell me what's going on, or if i need to have her evaluated by a specialist. Thanks for any guidance. Blessings ~
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I don't think Memory Care is covered by Medicaid. Not sure, though. I've always heard that when a patient stops wanting to eat, they are ready to die. I would definitely find a new physician for her. A specialist who specializes in the elderly is best.
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Yes, many Memory Care or Dementia Units or Homes accept Medicaid. To get an accurate diagnosis, you would need to have her seen by a neurologist or a geriatric Psychiatrist...both generally are experienced with all types of dementia and the geri psych MD is experienced with all geriatric illnesses that require some psychiatric drugs to help with the behaviors. They do not take the place of the family doc or internist or primary care doc who handles general health, physicals and other chronic health care. Hope this helps. I am a retired RN and have been through this with my Dad...including placement, and now with my Mom, who has been home with caregivers, but is now getting ready to move to Assisted Living. He had dementia and she has early alzheimers.
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My elderly friend in the nursing home is about the same. Some good days and some bad ones. I have to thank God that she isn't frightened and seems to have her fantasy about dead relatives that bring a comfort to her. Recently she told me she was going to have Thanksgiving dinner with her mother, father, sister and ex-boyfriend that are all deceased. She told me she wants me to get bras (she hasn't worn one in 10 years) a dress and a London Broil raincoat. It was with great difficulty that I didn't start laughing or correct her. God Bless all you care givers out there.
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To what value does it give to argue with a dementia patient? Answer=ZERO!
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Creativity is absolutely crucial. My dad became terrified last winter because an ice storm was coming our way. I made the mistake of wondering outloud if we'd lose our electricity like we often do in heavy ice storms. Talk about fuel to the fire, wow. Thankfully I had learned through him to flip on my creative switch (it took me a long time to find out that I even had that particular switch) I became 'excited' about the prospect, "just think dad, we can make a fire and snuggle up in front of the fireplace, it'll be like the olden days, right?"
I was animated but kept my excitement on a lower key for the sake of restoring calm and peace. I just stayed positive and rattled off all sorts of ideas, even interrupting him with yet another idea in order to bring his thoughts back to a level he could handle and begin to feel safe again. Its important to remind them over and over, calmly but firmly that they are safe. "Everything is alright. You are safe. I promise, you are safe." When he finally began to relax I gradually talked about other things to help him let go of the ideas that had overwhelmed him with fear.
I know your situation is more extreme and you have issues to deal with that are different than mine. Still, I think it's important and extremely helpful when their thoughts hit a sharp curve to creatively overpower their imagination, take the driver's seat and coast with them down Creative Lane.
Bless you both, hang in there.❤
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And no, it's not as easy as I made it sound lol but it is doable and it gets my dad and me through a lot of rough spots.
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