How do I talk to my mom with dementia?

This is a really a matter of educating yourself and taking the time to do it.
There are many online resources and Teepa Snow's videos (look her up) are a good free place to start.
Stay on support groups such as this one.
Know that you are now seen by her as not so much daughter but as caregiver with all the good and bad things that go along with that. Bad would be you are now setting the rules and limits. Good is that you MAY rescue her. And that often results in upward of 60 calls a day with a senior who still has access to a phone.

This is heartbreaking for you but you must stay focused, understand you didn't create this awful situation and you cannot fix it. You also are not responsible for her happiness and the best first thing to accept is that your mom may never, except momentarily, be happy again. Not everything in life has a fix and most things that hit us in aging are not about happy.

The best thing is to simply keep repeating "This is where you live now because we have to know you are safe and cared for. I will come see you. I know this makes you unhappy but it will not change, so do the best you can."

Your mother has had a full life. There have been many times she was not in control of circumstances and she wasn't happy about it. The difference now is that you are picking up the mantle of guilt as tho you are responsible, and can fix it in some way.

Limit visits when her mind trips into the circular habitual meanderings about going home. Keep visits short, divert attention the best you can, rely on the caregivers to tell you how her day is REALLY going, and again--don't expect happiness. It wouldn't be there were she home with you, either.

Learn all you can. Look up support groups. They are EVERYWHERE. You can do them even on Facebook. Google will be your friend. Read this Forum and participate.

About all I have for you. No good answers in the world of dementia I am afraid. As the late great Oliver Sacks said, they have a whole entire world; it just isn't YOUR world.

Best of luck and welcome.

Wanting to go home, for a dementia sufferer, means she's wanting a place in time when life was easier and she was happy and content, more so than a brick and mortar building. They regress in time back to when they were young girls, so nothing looks familiar to them now. Which is why they forget people's faces sometimes....they're expecting to see a daughter of 15 instead of a middle aged woman, as you are today. Most of us with loved ones suffering from dementia know the begging of "I want to go home" even when they ARE home.

Your mother may be seeking physical or emotional comfort of some kind when she asks to go home. She cannot express what she needs in words, most likely, so some detective work on your part is required. Offer her a hug, a back rub, a cookie, a blanket, etc. See if she needs to use the bathroom.

Telling your mom she already IS home is the worst thing you can do because it's dismissing how she's feeling and reinforcing that her discomfort will not be addressed. If she doesn't recognize her environment as 'home' at that moment, then for that moment, it isn't home.


The simple truth is not often recommended with dementia because we are applying OUR code of ethics to THEIR damaged brains which require and seek comfort to stay calm. Therapeutic Fibs are recommended as needed and shouldn't be looked as as "sinful lies" but common sense logic, given the disease at play.

Mild calming meds can work wonders during Sundowning in late afternoons. My mom did well with Ativan.

While Sundowning, my mother would tell me she was riding the subway (in Colo) to go home (to NYC) to see her parents and siblings (all long gone). I'd offer her her a snack or ask her to tell me about the house. Divert her attention AWAY from the obsessive subject, in other words.

Conversations in general can become impossible with a mom suffering from dementia. They can't retain a train of thought, so they're scattered and all over the place. I'd feel like I jumped down the rabbit hole quite often when speaking with mom. Cut the conversation or the visit short if you can't move things to an upbeat place. Try again another day.

Plan a visit shortly before a mealtime so you can get her situated and then leave.

Let her know the DOCTOR is in charge and if he says she's well enough to go home, then you'll discuss it. Until then, the subject is closed.

Lastly, do not feel guilt or certainly not shame in the fact mom lives in managed care! In many cases, in home care is simply not possible or affordable. For me as an only child, there were no siblings to take turns with. Mom settled into Memory Care Assisted Living and was beautifully cared for by "her girls" as a team, vs. by one exhausted and burned out/resentful daughter turned unqualified caregiver. It was a win-win situation for us, as evidenced by the fact mom lived to 95+.

Wishing you the best of luck with a difficult situation.

Really doesn't matter where your relative lives, foster care, family home, or other care facility, most express a want to go "home." I've been reading a book by Tami Anastasia (Essential Strategies for the Dimensia Caregiver) and listening to Q&A sponsored by the Dimensia Society and have also asked my wife what is at "home" that she likes and all answers are similar. Home is usually an idea and not a physical place. It may resemble, in their minds, their childhood home but it is where they have fiends and relatives who love and care for them and are mostly from 40 years ago. It is a happier place.

I also recommend Teepa Snow videos. There's a lot to learn in order to interact peacefully and productively with someone with dementia. Your best tools now will be patience and tempered expectations. Dementia is changing your Mom, but she's no longer able to change herself in any way. I live next door to my 95-yr old Mom whose memory loss, aphasia and dementia are progressing. Every day I have to remind myself that she can't help saying what she says or doing what she does. I have to stop "remembering" my Mom from my youth.

Also, I have to tell myself every day that I'm not her entertainment committee. There'd be no end of entertaining her if I was. I'd have no life. You need to protect yours, so make sure your boundaries are healthy and clear.

People often try to guilt you by saying "your parent took care of you and now you owe them and need to take care of them". Taking care of a child that you brought into this world who is always growing and maturing is NOT the same as taking care of an adult who is mentally and physically ill and deteriorating daily. Not the same at all.

Your moms personality and temperament will change as the disease progresses. Limit your time with her by making your visits shorter. Quickly change the topic if she is on a rant or negative loop. I just kept telling my mom that it was no longer safe for her to live alone and then I would talk about something else.

Go to Teepa Snow's website. She is one of the country's leading expert on dementia. She teaches how to talk / communicate with dementia inflicted individuals / family members, and explains how the brain changes - the parts of the brain that manage different areas-functioning / how the brain works, as one loses brain cells and/or as they die.

What you DO NOT do:

* Argue
* Use Reason (it doesn't work) / creates more emotional upset

What you DO do:

* Offer reflective listening, i.e., "Yes, I understand you want to go home... I want you to come home, too." Then smile.

* Say: I love you and I'm working on getting you home.

* She won't remember what you say --- so be aware to focus on PRESENT time statements/communications. Keep them short (Yes, we will get you home)

* You focus on non-verbal ques, i.e.,
- eye contact
- smiling
- soft tone of voice
- holding her hand
- giving her hope in PRESENT time ("Yes" I will ... Yes, you're coming home then change the subject)

DO Realize:

- Even if talking gibberish, people with dementia understand when a person is there and CARES. Love gets through.

- Do not presume that because her brain / logic / cognitive abilities are declining / gone that she doesn't FEEL. She does. Being emotionally present is huge and essential.

There are many books; find one(s) that speak to you.
I would encourage you to take Teepa's webinars (which I did for close to two years).

Lastly, and important: Take care of yourself. This is a time of grieving in 'slow motion,' and it is very difficult for the family. It is heartbreaking to lose you mom and then not know how to 'communicate' with her where she is.
- Do nice things for yourself: buy flowers, meditate, lean on friends / networks / association gatherings for support.
- Do not over-extend yourself. Learn / continue to renew yourself and balance your time with 'me time' and 'mom time.'

Gena / Touch Matters

I didn't read the other post, so some of this may have said.

At a point in dementia, some people are just never happy, you can never do enough or be enough. I was trying to make mom happy but it's pointless and made me missurable.
I suspect if she was home she would find other things to complain about.

Your moms brain is broke, we can't fix are moms, no matter how hard we try. I'm leaving in a minute to go to moms for her birthday, I'm sure it will be my fault that my kids couldn't come, or this or that.

All I can say is , your mom is in a safe place , and you are being the best daughter you can be.

Best of luck

Dear Lynda5,

This is a difficult time. I have one recommendation. You need to remember the love.

You need to forgive yourself on those times when you feel like you are not doing enough. As many have said, you cannot fix dementia.

I could tell from reading your post that you are doing everything you can. I can also tell that you love your mother very much. Those are really the only important things!

You are not alone! And you are doing everything you can. There will be tears, there will be anger, there will be frustration, and there will be grief. And although it is extremely difficult, remember to breathe, remember to forgive yourself, and remember the love. And you are NOT alone.

Paula

My 75 yr old sister and myself (73 yr) took on this responsibility for my mom (now 98yr) almost 10 yrs ago, after Dad passed. She has significant memory loss but is mobil with walker and does her own personal hygiene (bathing, dressing, etc.). My sister and i switch every 2months living in her home and provide companionship and bill paying/shopping/dr appt/ social interaction/family events/personal friendships/etc. We promised her and Dad they would never live in a facility. Dad provided an investment portfolio that meets and exceeds her needs financially.
It can be a difficult journey and almost always is. We never expected this situation to endure for so long. We have total support from our families, though mom is last remaining of her generation.
on a personal level, it can be tedious, you will lose your own personal life on many levels. And,for me, you see your own life and retirement expectations being pushed back and fading away. After 14 years, my dreams of travel in retirement, or spending time living in a Beach community, or road trips have vanished.
My answer is “How can I not?”……for this person who has cared for me and my children(2) as a single working mom, who was always there for us….always….both financially and emotionally…and also cared for my grandchildren…(she and Dad didnt want them in a daycare facility) . Their home was always open to us all, for holiday celebrations, family events, etc. Recently my 2oldest grandkids graduated from SDSU, education was always their primary goal for them. How can i not?
my sister travels from out of state (albeit from Kauai) but leaves her husband every two months.
Caring for an elderly parent can be difficult and challenging….temporarily leaving your life behind is exacting and emotionally draining. Some children move cross country to do this, and/or move in with their parent(s).
But relationships are different and so are circumstances. Everyone makes their own choices according to priorities, whether they have family support, financial support, etc.
I had great(not perfect) parents who always loved me, even when i was unloveable. How can i not?
An aside, I dont expect or want this from my own children. They each have beautiful families and beautiful lives and i have so much joy just watching them all thrive and experience a truly loving family life. My heart is full. I see them all a couple times each week. Sunday is “Hula Sunday” so Hula Ohana is also here at mom’s house. My youngest daughter now teaches mom’s classes (for the last 10 yrs).
We regularly view old family photos and videos. Dad was an amateur photographer so lots of those.
I dont want to hinder any lives or affect any choices or decisions. I love them all. And thats all.
A facility for mom was never an option. She didnt want it and we didnt want that for her. I couldnt survive the guilt or shame of not being able to care for her when she needed me the most.
My choice, my circumstance, my life. Everyone is different

Lynda,
Thanks for being so participatory on the Forum.
You have no idea how often we get questions and never see the OP (original poster) again! So great to hear you are already out there exploring materials available.
I sure hope you will continue to update us, and will participate here to help others with all you learn on this journey. Remember, we all started out in the same place pretty much here. I still remember my desperation 5 years go, to get help.
Take care!