New dementia diagnosis. What can I expect?

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.

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.

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.

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.

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.

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.

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.

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.

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

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.