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Doc just told me my mother has moderate to severe Alzheimer's dementia. I have been working with social workers to get her to a skilled nursing facility upon discharge from the hospital. I know dementia is different with each person, but in general, what can I expect?

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I'm sorry to hear the news about your mother. That must be really hard to hear. Even when we know, it's hard to accept. How is she doing physically?

When you say that you are working with social workers, are you referring to those in the hospital? Does your mom need rehab for some kind of physical condition, fall, fracture, etc.? Does she need skilled nursing care or is she able to live in an assisted living facility, like a Memory Care unit? I'd likely try to figure out what type of facility does she need to meet her needs. My LO has severe dementia, but, does well in a Memory Care facility. It depends on the rules and policies according to your state. I hope you'll get some more responses on this.
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I’m sorry to read of your Mom’s diagnoses. The truth is that there is no hard and fast answer. Every person is different. My father-in-law was meek and mild and my mother was a raging beeyach. My mother was a negative, paranoid and dramatic. When dementia kicked in, it got worse. She also went right from the hospital ( where she was with a urinary tract infection) to a SNF.

Its impossible to predict how your mom will react to being in an SNF. It’s a matter of handling one day at a time. Don’t visit for a few days until she’s had a chance to adjust. Learn how to tell the Therapeutic Fib. When she asks to go home, tell her the house is being painted. Research this site. There is an absolute wealth of information here from people who have been there, done that. Above all, don’t take guilt for her situation upon yourself. She’s in a good place; safe and cared for. Come back often and let us know how you both are doing.
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thanks you guys. i have posted a few times, but that was bd (before dementia). i'm sure this site will be a real asset for me as this progresses. bless you all for being a caring community and may God give us all mercy and patience as we venture into this dark alley. may God have mercy on our loved ones as well.
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Much depends on her age. The older a person is, the slower the progression. I've been dealing with my mom's AD for 9 years, and now she's at the end of life care being 89 years old. The last several years it became severe but now she's weaker and now under palliative/hospice care. It's getting harder and harder to walk and get out of bed. When she starts wandering at night especially escaping the home you are at a severe level. Eventually that stops because they get too weak to walk that much. There is nothing you can do about it--it's a progressive deterioration. and it's a pure hell for family to go through. Get your financial matters dealt with now before she gets beyond that stage you can't move her. See an eldercare attorney with regards to estate planning. Hopefully you got Power of Attorney matters settled before her alzheimer's. If not you really need to see an eldercare attorney. Also are you planning to put her in a nursing home? You need to get her Medicaid ready. Eldercare attorney needed. My mom's home was just in her name but since I have POA way before she got AD he did a "Lady Bird Quick Deed" which added my name to hers so the home will never go through probate but title simply transfers to me. I did this when she still had some lucidity and I was able to take her around and take care of business. So you need to take care of all of this now. My only advice is see an eldercare attorney and get the estate planned out.
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In general you can expect wandering around. Fabrication of topics, subjects, tasks...None of which exist. Over paying. And 180 days late on some bills. Reluctance to surrender driving. Mis placing of objects. Some lashing out and apathetic. What works for me real well is 100 percent black out on news and events. 100 percent black out on any subjects you have disagreed on. Politics, career. Black out on any stressful programing on TV. Put on nice TV shows. Reducing the household to a super easy place to function making sure everything is in the right place evey time. Making sure the room is dark so she can get great sleep. And Also extreme leadership on your part helps. These are the general things. There are more advanced tips in this web site.
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Even though my journey of being a full time Carer to my Mom ended in June 2016 when Mother passed away Here at Home at 87 years of age after a three and a half year battle with alzheimer's Rest In Peace, yet I would not sign off on this wonderful Aging Care Site which was invaluable to me and I do breeze in every so often. How lovely and compassionate and kind You All are to each Other and I just wanted to say You are All Angels of Mercy Who make Your Loved Ones suffering so much more bearable. God will reward You All handsomely.
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Whoever your mother was or whatever personality traits your mother had before dementia will be exacerbated with dementia. All the best.
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So many good tips here.  My 94 year old mother is in an ALF, the last year in the Memory Care Unit.  She has dementia, not quite at the severe range but sliding towards that, literally. It's so difficult to watch this disease progress. I agree that whatever personality traits the person had before dementia, become accentuated with the disease...in my mother's case, that's anxiety and self-absorption.  What I've also noticed the last year is that she will increasingly not look at me directly when she speaks.  Communication is a roller coaster:  one minute she's talking quite lucidly about something; the next she is telling me a story that makes no sense, either in the case of the nouns and pronouns she's using and I suspect some of which have origins in hallucinations or dreams she had.  Once I know it's not something (by gentle questioning) that threatens her safety or well-being I just give her the "oh, ok mom"  or "I'll look into that, Mom" and pat her hand.  By the next time I see her she's forgotten about it. 
I'm not sure what clear advice I can give you here.  Like my mom, I have good days and bad days and try to limit my visits to no more than 30 minutes, at most twice a week.  She sleeps more than she used to during the day, and can't really take a lot of stimulation.  That is also about my limit, and I recognize I can't be helpful to her if I'm stressed out or depressed with dealing with it.  And finally, yes, this forum has been a lifesaver for me.  Just knowing we're not alone in this means so much. I visit this often and can't thank all of you enough for being there!
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Strap in, and hold on for the ride! First and foremost, you CANNOT take what they say seriously. There will be outbursts of crying and anger, but there will also be times that are enjoyable. Many examples to explain, but the most prominent and the one that made me have to pot mom in nursing home was during a bad storm over the winter, we lost power and brought mom to our house ( she had no heat), it was like having a toddler again. My son was away at college, so she stayed in his room, but she was up every hour!! Mind you she is in a wheelchair and is paralyzed on her left side.. I would question what was wrong, crazy answers, I am getting up to watch TV, no mom it is 2 an, go back to sleep. I am getting up to make a cup of coffee, no mom, it is too early, go back to sleep. I am going to feed the cat, no mom, we do not have a cat, go back to sleep. I could go on, but she did carry on a fake phone conversation with my aunt ( no phone in the room), but it seemed so real!!! She told me I was crazy when I asked her who she was talking to!!! It seems best not to agigate and to agree when they have questions or concerns. There were and still are questions of why she is there and how terrible I am for putting her there. It is for her safety and for myself, getting back to a somewhat normal schedule. Good luck and this forum really helps, you are not alone! 😁
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Getting her into a skilled nursing home will be important. Not all nursing homes are equal, so get her into one with a good rating. The home at which I am a volunteer, has hundreds of volunteers, which helps to take some of the work, such as taking the residents to activities, off of the nurses. When my mom was at the nursing home, I promised her that I would never just leave her there. I showed her and others how a person with advanced Alzheimer’s could still have a full life, even if that simply meant taking her outside several days a week or even dressing her up as a witch at Halloween and taking her to another part of the nursing home to hunt for candy and coins that I had hidden earlier. I would also take her to movies, until being in the dark was too much for her. She would also come with me to the laundromat in another town, where she would help to “fold” some of her clothes (eventually all she could do is roll up her pajamas in a ball) and help me put the coins into the machines (I had to guide her hand). Another important resource for you is the book and the daily newsletter by Carol Bradley Bursack called Minding Our Elders. Very important! I encourage you to take heart. There is much progress on Alzheimer’s that the medical community does not know or knows and is simply too lazy to tell you. For your own sake, should Alzheimer’s run in your family, be aware of Dr Dale Bredesen (UCLA) who wrote the book The End of Alzheimer’s and has a 90% cure rate. He has trained over 1,000 practitioners in six countries in how to use his protocol. Starting in September, I will be under the care of one of these doctors. There is also a Dr Michael Fossel who is moving into human trials to test his “vaccination,” which will instruct the glial cells in the brain to become young again, which would clean out the brain better during sleep. You don’t see 14 year olds with Alzheimer’s. Lastly, I want to encourage you to live in your loved one’s world. If your loved one says something that does not make sense, just go with it. Trying to correct her all the time does nothing but break both of your hearts. Above all, show her kindness, even if she did not (does not) show it to you. When it is all over, you will know that you did the best you could.
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Desperada, my sympathies for your news. If it has been diagnosed at the level you say, then you must have noticed some kind of decline in recent years. As others have said, subscribe to this forum. Next, READ, READ, READ all you can get your hands on. Books abound on the topic. Many recommend one called The 36 Hour Day. (I have it but am scared to read it...).

One thing you can expect, depending your personality, is Guilt - loads of it. Feelings of ineptness, frustration, anger, and so much more. If you are at all involved in her care (even if it's just making decisions she can no longer make), though she may not be living with you, you are a caregiver (though perhaps not by legal definition), and you must take care of yourself to be able to help take care of her. See if you can find a local in-person support group for caregivers; there may be some specific to dementia/Alz but even if they aren't dedicated to that, they may be of some help to you. Though you may feel like it at times, you are not alone. Little comfort, but that's when you can turn to forums such as this.

It's a cruddy fact, but money is a big part of it - using her estate for her continued care until such a point as she can qualify for Medicaid. An attorney specializing in elder affairs is a must if you're just beginning to deal with the financial aspect. Gather as much info as you can before meeting (these forums may help define what that is) so you make the most of your meeting time.

Also, if you have siblings to help deal with this, I hope you all have a meeting of the minds when it comes to your mother's future. I see from these forums that sibling issues can tear families apart. Being on the same page will do much to avoid one huge stressor.

As to what you can expect, there's only one answer: the unexpected. But take care of yourself so you can take care of her. Good luck to you.
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Take care of yourself first, so you can give her what she needs. I'm blessed that my Mom has always been a sweet and caring woman - now that she is in advanced stages, she is still a sweet and caring woman. Her onset was early (we think around 64/65 years old) and the progression has been rapid and heartbreaking, but I thank God every day that her personality remains. She does get frustrated and sad, but is easily distracted back to something more pleasant. I found that listening to her music has been a constant source of comfort for her. We set her up with Alexa and she is able to ask Alexa to play her music or for the news of the day. I also set reminders for her that Alexa will prompt her - reminding her of activities in the community, birthdays, etc. Best wishes to you and your family.
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Youve gotten a lot of great responses. I'll throw my 2 cents in. My Mom had vascular dementia for about 9 years..made so much worse from several surgeries and the anesthesia. She did not have Alzheimer's. Her personality stayed about the same. She just was incapable of learning anything new. Almost like amnesia. My dad was able to be her caretaker. But..she could dress,shower, feed...read, watch TV..have nice conversations...he needed to remind her to take her pills. She would not be able to stay overnight, Al, and she couldn't drive (though she insisted she could). She knew all of us well, and old friends well..she hated walking around their complex as she knew she forgot who people were. Gerlogic was pretty bad..used to be so bright...but she loved to read paper, had understanding, watch TV with my dad..drive him crazy with her off questions..she forgot how to use fushwasher, as he took over that function, but she still used washer,dryer. She forgot where dishes went. And kept forgetting her local geography.... things like that. She died, suddenly of a massive stroke, 3 months after theyoved to a all level retirement community..ind living, due to dad. But I just wanted to point out differences between diagnosed Alzheimer's..and the more generic dementia..not all that have vascular dementia have Alzheimer's..and will never have Alzheimer's. Her quality of live was fine, though she would get frustrated with her Swiss cheese memory, and logic.
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Arleeda Aug 2018
Yes my husband had vascular dementia also, and also died of massive stroke. Your mom's course sounds a lot like his, in that he knew people and where he was. But he had a loss of "executive function" and couldn't balance his checkbook or remember to pay bills. When he had what we now know were TIAs, he would see people who weren't there. I now see my memory failing and wonder if I will have Alzheimer's since I carry one ApoE4 gene!
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Check out Teepa Snow on line & watch her 'TEEPA'S GEMS' - your education on this matter will help the both of you in the future
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Expect the unexpected. The worse part is that it never gets better; only worse over time. For some people slower, others faster. Current medicines may give some temporary improvement, but do not last and there will probably be other side effects.
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It truly is different for everyone. What seems to be common for all of us as caregivers — which I encourage you to learn about by reading questions and answers on this site — is that we need to adapt to a new normal. The sooner you can adjust your expectations to your mom’s newly diminished abilities, the easier this may be for you.

The one constant is the emotional nature of your relationship, although I think that can take unexpected turns as well. If you are close, you will likely remain close, but the strains of caregiving may be difficult and there may be times when your mom’s attempts to fill in gaps in her memory result in uncomfortable accusations. (For example, every winter for a few years, my dad would call me whenever he couldn’t find his hat and gloves, and either ask me if I had them, or outright accuse me of taking them. Sometimes he would plead that he really needed them because it was cold out, and ask me to bring them back. That was hard to hear, because I love my dad and would never do anything to harm him. Over time, I’ve had to learn to think of it as his illness at work, not him, and try not to take it personally.)

Those kinds of moments — and possibly even worse ones — may become part of your reality. But professional caregivers can really help, whether in a home setting or assisted living or a nursing home.

Explore all the options for care, including in-home options if you can, since she will be more comfortable in familiar surroundings. Check with your local Area Agency on Aging for options, advice, and support groups.

Teepa Snow is a great author to turn to for advice. She has videos on YouTube as well. And of course this site is a Godsend. Come back, read what others have said, and don’t hesitate to bring your questions to the community. We are here for you!
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Simply put....anxiety.
I really think it depends on YOUR personality and a lot of humor. My sister is an A personality as well as self absorbed. Me, I am just the opposite in SO many ways.
I roll with the flow BECAUSE I know that Mom's mind is not there any longer. I let her tell me to go back to bed, hit me or whatever Mom is feeling at that time. Then I tell her that she's right, depending on what she's said. I walk away just like she's a toddler throwing a fit.
I've said before on these posts, my favorite interaction, when the EMTs came to take her to the hospital. She had 2 choices 1) let me place the safety belt around her so I could help the EMTs OR 2) I'd use the belt to spank her (only fair after all the ones she gave me 😁😉)
I started to place the belt around her and she elbowed me in the neck. I told her I would stand there and let her hit me for as long as she wanted, BUT she was going to the hospital (the EMTs were in the kitchen with my husband laughing), we got it done and I had a very sore neck for about 2 weeks.
My sista would have become angry with her, spewed many angry words and most likely let the EMTs leave.
While she was in the hospital, me and my husband went with a caseworker who had been referred, around just like a realtor would searching. We found, even though expensive, the ABSOLUTE best group home.
We live out of State, even though I'm required as Guardian/conservator to see her at least once a month (I would be there a few times a week if I could if we still lived there), I do not have an issue about this and would do it without the Court anyway. I'm also so extremely blessed to have an Uncle (Mom's youngest brother) who goes at least twice a week for me.
I do have fun when I go to see Mom. I talk with any of the residents who happen to be awake and out of their rooms. My favorite is a Ms Francis, her Mom is late picking her up to take her home. We could talk for hours if I didn't have other things to do regarding Mom's property etc.
Anyway, it kills me that I had to do this as my 3 siblings didn't for whatever their reason(s) help or have anything to do with this part.
I promised Mom she'd stay in HER home forever, but life changed.
I cry every time I leave, forms I have to fill out because she is now considered a minor under State law. The hardest was having to take her voting rights away. THAT was the hardest to do and the one that truly hit me with reality of the situation.
I'm in constant contact with the group home mgr and she with me.
Try to bundle your emotions, wrap them up in a pretty package, leave at the door, enjoy having your Mom still here to visit (it will be different every time), pick up that box on your way out and open it when you get home.
Talk with the other residents because most of them are "dumped" by family members, so they never get visitors. You will put a very big smile on their face(s) and they will know when you come by again, they have someone to see them too. Their reality is the present and then it goes back to the past.
THIS is what I do and it is something that is therapeutic for me too.
My siblings....my sista visited on Mother's day, my other sister....never (both live there and maybe 45 minutes away) and my brother....never, but he lives in TN, works for an airline so it's not like he can't get a ticket.
You have lemons now, you need to decide how you're going to use them now.
I like my lemonade on the sweater side
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HelperMom Aug 2018
I'm curious, why did you have to take away her voting rights? (I mean, I know the obvious reason why someone can't necessarily vote if they're not able to follow the issues, etc., but is it a requirement of your state that if someone is in guardianship they are not allowed to vote?)
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Teepa Snow. The best professional advice from the country's leading expert on dementia. She shares (1) brain changes/activity (2) what is happening from their experience; and (3) how to best communicate.
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I write from the patients position. I was diagnosed with Dementia/prob ALZ early onset 2 yrs ago just one month before I was 57. I first complained of memory issues in the winter of 2011. I was tested for several things and basically, I was without a diagnosis until June of 2016. MY DW and I had begun doing our Estate Planning a month before my diagnosis. My diagnosis made it the most important project of our lives.

I want to encourage all reading from this blog especially if you are a younger reader, get to it and make plans for your retirement, ill health, and financial planning for your care, which should include Long Term Care Insurance. The younger you buy it the less expensive it will be and you will have some amount of protection should you need Long Term Care. When I tried to buy LTC in my early 40's, I was diagnosed when I was undergoing underwriting for LTC with Muscular Dystrophy which made me ineligible for LTC. We got my DW a LTC policy the very day she turned 40.

I rest more easily knowing that we put all of our property in a Trust in my DW's name two years ago, three to go for everything that we worked for to be protected. We also included some very strong language in the Trust where my DW stated, she was making no provisions for me or my care. Today, I own nothing and keep 300.00 per month in an account where I receive my SSI Disability Income and the remainder is deposited in my DW's Trust. I use the money I keep to purchase things using small denominations of money and purchase a few things we need for the house, etc and this gives me the chance to continue interacting with other people and transact simple transactions. Buy a sandwich, or a cigar, and I'm still in touch with people.

Yes, I pray and thank God each day for being so lucky as to have a DW such as the one I have. I try and do my part and communicate when I don't understand things. I don't deny having made a mistake when something is discovered that I've done wrong, like mailing an envelope that did not include the check written to pay the bill. I stick my hand up and say, I goofed. My DW decided she'll look over any correspondence before I seal the deal. She's been an elementary school teacher for 30 yrs and is unflappable. We've been partners dedicated to helping each other since we started dating 24 yrs ago, and married 22 yrs ago.

I also have explained to my kids, ages late 30's, early 20's, late teens and finally an 11 yr old. Don't argue with me you can't reason with a patient that has dementia, distract me, change the subject. I believe they are getting used to the idea that some days I'm bright and onl the ball, other days, the fog rolls in and I have difficulty completing or staying on tasks.

All know my wish when I need to be place in Memcare, drop me off and go about your lives. In particular, I want my DW to get on with life and create a new life for herself, the sooner the better, she is in her early 50's and in excellent health with a lot of life to live. I want their visits to be rare, I don't want them dotting around feeling they can't get on paying attention to their own families and not worrying about me. I won't know whether they've been there or not. I've felt this way even before dementia began to take hold of me. My mother was DON for a medium size Catholic SNF for many years. I got a good education from a young age about making plans for yourself. I've done that, we've had good legal advice from an Estate Attorney followed up with a Elder Care Attorney looking over the Trust, who said, no stone was left un-turned, no mistakes as the current law states in our state. We spent about 4500.00 in legal fees for the Trust and second opinion. We believe it was money well spent, and we sleep all the better for it. We're glad we spent the money.
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Marti1140 Aug 2018
I love how you handled this and prepared your family for the future. This is a true love letter in action! Blessings to you and your family!
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Hello Desperada,
Not going to sugar coat my experience just letting you know what my mom (who had dementia), my sister and myself went through. It’s going to be a tough journey. You’ll cry and you’ll laugh but most importantly enjoy what good times you can with her. She won’t understand what is happening to her so you’ll be her guide. She want to do things sometime that won’t be safe SO, you and your family members will have to make it safe for her. She’ll get to the point where she’ll ask the same questions over and over, just answer them over and over (lots of patience). Do as much as you can with her, even if it requires you to haul a wheelchair around, as long as you enjoy the time with her. You’ll know when it’s time to keep her stable, cause it’ll be to hard to move her little body around and it’ll be to hard for you as well. She’ll start needing more medication so just be sure to consult with all the doctors involved, ask questions about the medications she’s prescribed. Research the medications, ask the doctors about counter reaction between meds. If you ever place her in a facility be there as much as you possibly can. It’s to hard for the staff to give them the proper care we expect for them. At the end you know you’ve done all you could for her and will have a peace of mind.
We cared for my mom for 7 years. The last two were very hard but we were committed to her. Our lives were put on hold those last two years but our husbands stood by our sides. It was not easy. We disagreed with the doctors, nurses, ourselves and sometimes our Heavenly Father but with prayer, strength, ALZ support group meetings and doctors were survived.
Stay strong, involved and keep educating yourself.
God Bless your mom and give your the strength you will need.
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Desperada,

I was reading some of your responses. I felt the love. I run a companion care company and some of the things listed below were on time.
One, you are not alone, and yes you will feel that way, but surround yourself with a support group and with no doubt, Love-On-Your Mother, all ways. Not ever day is going to be great, but neither have the days that have passed you by have all been great. That's life! Some days we eat ice cream and other days we go hungry.

Please educate yourself on this disease. I know your mother may present typical at times and other times, it will feel like, 'this is totally unheard of'.

I want to leave you with a few points:
1. Enjoy this Life
2. Enjoy your family
3. Start talking and planning your financial future while she can handle this conversation. (same with family members) Keep in mind these are conversations. It may take days, months or even years before you all agree. And that't totally OK, just start them...... I call it planting seeds.

Stay Inspired,
Shonda
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jfbctc Aug 2018
Hi Sbrock,
Obviously your reply was well thought out and organized. Thank you for taking the time to share your experience with others that allows us all to grow strength on our journey through this disease.

God Bless you,
John
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Hi Desperada

Sorry to hear about your mom's diagnosis. In reading the other responses, there were some very good tips and tools that were mentioned. And just as was also mentioned each experience can be different. My only suggestion, which might not be for everyone is journaling either written and/or video of family occasions and history while you still can. Even though I am a writer and coach, as time went on it became more and more difficult to have my mom share stories and her thoughts and feelings. But thankfully, I got my mom to share what she could of things that were important to her as well as stories, traditions and family history I wasn't even aware of. And now that she's gone these are precious memories and important information can refer back to and share with other family members and it was also helpful in finding out medical conditions that were family traits that ran in our family I had no idea about. 

I wish the best for you and your mom, and also keep in mind, there are new medical research and advances being discovered all the time as a possbile cure for the disease. So, hang in there and stay strong!  

Globee
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Dr Dale Bredesen protocol, my mom was agitated, couldn’t walk at times and angry. She’s much calmer and even got up on her own upon beginning the protocol. It makes the person manageable at home so you can avoid memory care or nursing homes.
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These are all great posts. I particularly like the resources pointed out by 20eagle16; somehow missed those myself and am looking forward to reading them!

One other thing to watch for is getting caught in those therapeutic fibs! Just when we thought Mom was in the past or in the middle of a hallucination, she would pop back, very unexpectedly into the present! AD is not a steadily progressive disease, but jumps all over the place...or at least it did with my mom.
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Lostinthemix Aug 2018
Jumps here, too, so it would seem.
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my mom is in a skilled nursing facility. she is still having hallucinations and delusions. i was given a guilt trip by my pastor who said he'll never put his parents in a "home". well, i've done what i think is best for my mom, my husband, kids and myself. i am really thankful for this site and i come here quite often to see i am not alone.
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Ahmijoy Aug 2018
Desperada, I am so sorry your pastor felt the need to make such an unfeeling remark to you. Whatever prompted him to say that? This is not a decision any of us have made lightly. Of course you did what you felt was right! Putting people on guilt trips with uncaring remarks like that is not the job of religious leaders. If he is in the habit of doing that, I may be tempted to approach the Church Elders with his lack of compassion.
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Others have listed some behaviors that might be common, but in general every person's journey down this yellow brick road can be so different. The actual cause of the dementia is a big factor as the symptoms can vary so widely between them!

Some things you might perhaps experience, but not all will necessarily apply:

Accusations (you are lying, you are stealing, you are cruel, etc. or it could be directed at someone else)
Fabrications (some benign, some more difficult to deal with, such as your mom's hallucinations, delusions)
Memory loss should be very common, initially short term memory - repeating statements or questions, unable to learn/retain new tasks or thoughts, unable to perform common tasks such as finances, meal prep, etc, but eventually long term will be lost too. Some dementias steal bodily functions first or early on.
Loss of ability to communicate (usually in the later stages, but again other forms of dementia may steal this earlier.)
Toileting issues (our mom has become a tissue/napkin/TP monster although she is mostly "functional") - some people can become incontinent and/or use inappropriate locations to relieve themselves.)
Eventually walking and even feeding themselves can become difficult and they can be unable to stand/walk/eat without assistance.
More and more ADLs can be lost as longer term memory fades, requiring more assistance.
Resistance to some ADLs, such as bathing and showering.
Anger sometimes comes into play, even aggression (our mom has not really shown this side)
Frustrations with decreasing memory or abilities - cannot deal with communicating, remembering, walking, etc.
Living in the past (our mom is now focused on a previous residence as well as her mother, gone ~40years)
Sun-Downing - behaviors that generally crop up later in the day (afternoon-evening) but can also happen any time of day or in some cases all day. Our mom became OCD later, around 830-930, when still at home alone, checking various things over and over and over for 1-1.5 hours! (We had a camera at entrance to protect her from those who prey on elderly and to monitor)

If mom is still having hallucinations and delusions, is it possible to get a better medical evaluation and perhaps a change or adjustment of meds? Not all medications are appropriate for all forms of dementia. It is not fair to her, the staff or her family to have her suffer like that! Our mom has occasional times when no amount of redirection or refocus helps. So, after arguing with the doctor multiple times, we finally got Lorazepam on an "as needed" basis for those times they cannot stop her (she would really be agitated, try to open the doors, set off alarms, ranting she has guests coming and needs to get out!) Staff is very good about this, and has used it VERY sparingly, attempting redirection/refocus for an hour or more sometimes!

For you, learn all you can (here and other websites, like alz.org), be prepared to feel some guilt but try to let that slide, get adept at redirection/refocus (if it can be done), agree with whatever she says or does (unless it is unsafe!), do not argue with or correct anything she says that is not true or borders on the ridiculous. You have to learn to live in her reality! This is a difficult journey, for both the LO and the family. If she becomes difficult during visits, cut the visit short unless someone can refocus or calm her down. You can always come back another time. Find out from staff is she has a "better" time of day and do your visits then. Do come back here, if only for some emotional support (and/or get outside counseling if you feel you need it!)

Please try not to guilt yourself or take anyone's guilt trips to heart. We do the best we can, do what we think is best/right and try to understand this is all we can do.
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Lostinthemix Aug 2018
Very very accurate and a very very GREAT way to explain this horrific ordeal!
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i really thank you guys for your answers and support. surprisingly she is doing well so far in the skilled nursing facility. she has a room mate and she has become like a school girl. this has been the happiest i've seen her in a long time. i'm enjoying this time of seeing her laugh as i know things will change eventually, but i am trying to enjoy this time and i believe i did the right thing. this may all change tomorrow, next week, next month or next year. i know all you guys will be here for me and i hope i can offer some encouragement in return to another newbie one day.
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You're correct about it effects each person.
IF at all possible, do not get Medicaid involved. She will be placed in one of those nursing homes where she won't get the attention she needs. They really are just places waiting for the residents to die and alot of abuse/a cult happen because the resident cannot express what is going on.
Do your best to find a group home that meets your standards and pocket book. Get siblings to help monetarily too as she is their Mom too.
Be strong and think about what your Mom would want for you.
I just went through all of this BY MYSELF, no help from my 3 siblings. I'm lucky that my husband was able to be with me and helped to find this absolutely beautiful group home. The staff are all Romanian and treat AL OF THE RESIDENTS like family. ALL meals are home made. I worry about Mom AND my sweet step-father, but it helps to know their dog was able to stay with them. She is like a service dog to my Mom.
YOU TAKE CONTOL AND DON'T LET ANYONE TALJ YOU INTO SOMETHING YOU'RE NOT COMFORTABLE WITH!!
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