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?
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!!
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.
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.
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
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
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
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.
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.
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
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!
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.
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!
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.
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.