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I am primary caregiver for my 81 year old mother who has dementia that developed shortly after my dad passed away in 2014. I moved in with my parents in 2013 to help care for dad. My Dad had cancer and only lived 5 months after diagnosis. He and mother were married for almost 50 years. Daddy passed away 43 days before their 50th wedding anniversary. Mother did not show any signs of dementia until after Daddy died, and then it was like a switch flipped and all of a sudden she just wasn't herself anymore. My brother or myself are always with her, she is never alone. We live in the same house she has lived in with my dad since 1989. My brother lives next door and helps me care for her. Her dementia has gotten much worse in the last few months. Sometimes she does not know that we are her children, she doesn't remember anything about our childhood or our dad. She seems to only remember her parents and brothers and sisters. Mother had 7 brothers and 5 sisters. Only 4 brothers and one sister are living now. When her sister comes to visit, mother doesn't want her to leave. For the last three days, in the afternoon around 4pm to 5pm, she has said told us that she is not feeling well and would like to call her mother and daddy to come get her and take her home. She even said that to my aunt, when she came over yesterday and wanted her to take her home to her Mama and Daddy. We tried to gently tell her that we cannot do that. But she says that she knows that they are alive and that they love her. She will cry and then ask for her brother to come get her. We have tried to explain that her parents are in Heaven with Jesus and that we can't call them or go there. But she does not understand. It's like talking to a little child. It is heartbreaking to think that she believes that we are keeping her away from her family and that she does not really know that we are her children. She knows that we love her and take good care of her, but she just wants to go back to her home. What can we do to soothe her when she gets upset like this? Has anyone else had this issue?

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Just enter her reality and tell her ok, you'll call them but it will take awhile for them to get there because they are "somewhere." Don't try to convince her they are gone, that will only sadden and agitate her unnecessarily. Then distract and redirect her as often as needed until her until the moment passes. She'll never be able to accept or believe actual reality, so you will be helping her and soothing her by joining her in her world and giving her the response she needs. Good luck.
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Because your moms brain is now broken, there is no reasoning with her, as "logic doesn't live here anymore."(that's a saying we use a lot in my caregivers support group)
Instead of keep trying to convince your mom that her parents are dead(which you'll never do)try telling her that you'll call them when you get a chance to come get her and then redirect her with a snack, ice-cream or whatever. Or tell her that they're busy right now, but will be by later. Those are called therapeutic lies or as we like to call them in my support group, "fiblets." And of course just reinforce that yes your parents do love you very much.
You have to now live in her world and not your own and your life and hers will be much happier if you just go along with whatever she is saying instead of trying to tell her she's wrong. That's a battle you'll never win.
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You are dealing with a child. Thats where she is now. Long-term memory goes too. Telling her they are gone is not her reality. Tell her they are working. Or visting someone and you are babysitting her. Its time for little fibs. And that time of day is "sundowning".

I also would bet that Mom was showing signs of dementia when Dad was alive. In early stages some are able to "showtime".
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My mother regressed to her 16-year-old self by the end of her life, so "home" was a place she hadn't lived for 70 years, my dad's memory was erased, and her whole world was her first boyfriend, Dan. Children of her own certainly weren't a thing when she was 16, so I was just a friendly face.

I learned early on to enter her world and not try to explain or make her understand anything. I'd always ask about Dan, and if she got upset that he wasn't there, I told her he was at work or football practice to calm her down. It always worked.

Every time you tell Mom her parents are dead is the first time she's hearing that. Stop doing that to her -- it's cruel.

Give yourself a break by not trying to make your mother understand reality. There's no point, and you'll actually feel better if you let her take the lead while you fill in the blanks with therapeutic lies.
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“They’ll be here to get you tomorrow, while we wait for them let’s (insert anything she’d enjoy here).”
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This is not at all uncommon. You cannot reason with dementia. Your telling someone with dementia the same thing over and over will make no difference in what they believe. This sort of thing has the added sorrow of the sufferer having to mourn things over and over again. But it is common in dementia and in some other illnesses that involve memory loss.

It does sound as though your decisions as to whether or not your mom should be placed in care at this time are coming sooner rather than later. She soon will be unable to recognize you at all, and you will be devoting yourself to full time 24/7 are when you should be living your life.

I am very sorry. I am a bit flummoxed by your saying that your mom's general condition hit all in one day upon the death of her husband. I am assuming that her dementia has since been diagnosed by the medical community.

I wish you the best, and again I am so very sorry.
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lakin1013 Mar 2023
Your response makes me wonder.
If you tell the person that their parents are dead, they will cry and experience the sadness over and over again. That is indeed, cruel.

However, the person with dementia can offer the cruelest of criticisms to you without care. Like a heat seeking missile, they will find, explore, and detonate your weakest places. And they will do so with indifference.

So we are to protect them from sadness while leaving ourselves open to the most unkind cuts of all. It is like their brain is dead, but also their feelings. Truly an ugly shell. Is there some explanation to this? Does alzheimers also bring sociopathy? the death of empathy?
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A friend of mine had this exact situation with her MIL, who kept asking where her (dead) husband was. Each time they told her “he’s in Heaven” she’d cry… and ask again 10 minutes later, cry, and ask again. So, now he’s simply “out”.

”He’s at work.”
”He had to go to the store.”
”He’s busy.” 

She’d still ask over and over but these answers kept her from getting upset. It may feel like you’re lying, but in this case you are preventing more pain for her. Out of love.
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My wife has asked similar question. I explain to her they are dead. It helps for a while then she will ask again. It’s just the way it is.
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The best thing is to just go with it. :) The more you try to explain and correct, the more confused they get. We found that making excuses as if they were alive, was much more comforting and stabilzing. It passes and then comes and goes. We said vague and comforting things like "I haven't heard back from them yet but I'm sure we will soon, they will as soon as they can, they want you to get a good night's sleep and we'll figure it out in the morning, if you're asleep when they call I will let them know. And on days she doesn't know you, "I am here until your family gets back, to keep you safe and get you anything you need."

We found that infection made a huge difference. If our Mom had a UTI, she didn't know us and asked for people who had passed. Once we cleared it up, she knew u and was pretty much in the present. Apple cider vinegar clears up a UTI and doesn't spin them into the antibiotic downward spiral. Good luck and God bless!
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Lymie61 Mar 2023
How do you administer ACV for her UTI and how much?
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Bless you for the loving care that you're giving to your mother.

You've described my own mother, who has lived with me for over 5 years now. When my twin brother passed away in 2019, the dementia began to manifest, followed by a fall with hip fracture and her PCP diagnosed her in early 2020.

My mother was the middle of 8 children and she still thinks that her siblings and parents are alive and she also wants to go home. She'll say that she just talked to her mother and her daddy is coming to get her and take her home.

She'll sometimes ask me to call and will recite an ancient phone number to call.

I always always go along with it - mainly because it comforts her in the moment. And in a few minutes the moment is gone and she didn't get upset because I tried to reorient her to reality.

My mother at times has thought that I was one of her sisters, which is fine with me.

I tell her that she's going to see her parents soon - maybe tomorrow - and that also satisfies her.

It's hard and sad. I hate to see my mother being homesick for her parents and not being able to produce them for her. So whatever you can say to comfort her is best.

Peace.
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Subscribe to Dementia Careblazers. My wife always wants to "go", "Be picked up by Dad", etc. Actually, she needs something and can't express it. Is she low on blood sugar and is hungry? Does she just need to go out? I often drive my wife wherever she wants to "go" and ask her which way to turn. After a while, she gives up and we go home happy, and we both had a nice drive. I guess sometimes it's just cabin fever. Having an EV helps (I don't pay for gas). I NEVER argue, and keeping things non confrontational and happy is the goal to remain pleasant, and she trusts me more.
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GaPeachMom, welcome to the forum. I had a similar situation with my own Mom when she was in later stages of dementia. Mom [90+] would ask to go see her parents.

It is far better to see a smile then see someone grieve over and over, so I told my Mom that her parents were visiting the old country, which they routinely did. I also did the "therapeutic fibs" whenever Mom asked to see her siblings all of whom had already passed on.

My Dad also had "sundowning dementia", where he would mentally climb into his time machine and go back to the 1940's. He would telephone me saying he wouldn't be coming home from work because he had missed the last bus, so he will stay at the hotel [which was his Memory Care room]. I just played along as I didn't want to frighten him.

We have to find what works best.
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Yes, you are correct. She doesn't understand. And it IS like talking to a child, and it IS heartbreaking.

But no, none of us on Forum have ever come up with a way to make our elders, who are suffering from dementia, understand. As Oliver Sacks, the great neuroscientist said, they do have their world; it just bears no resemblance to our own.

She will have this issue until it lets go, but she may move on to another. Attention can sometimes be gently diverted, but often it cannot. You will tire of repetition. And it is sad for you. I hope others have better solutions. Meanwhile you have my sympathy.
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My dad, who had dementia, always started asking to go home around 3 every day. The asking would last a few hours. I used waste my breath trying to explain why he couldn’t, but eventually I’d just tell him we’d try and go the next day. In her own way I’m sure your mother is “calling” to go home. It’s very hard to watch their mental decline, but as a believer I’d take some comfort in knowing she may really “know” they are alive and want to be with them. My husband died from a brain tumor and a few days before his death he told me he saw my mother (who had passed a few years before him) and that he told her he was going to make her a room with various “colored crystals to reflect the light from the hills”. He was a carpenter by trade, and we felt he’d had a vision of heaven and what he’d be doing when he arrived. We don’t really know much about the transition between life and death, but I’d take comfort in knowing your mom has people waiting for her there.
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I'm so sorry you are having to deal with this heart ache. But I can tell you from experience, as my husband is now in end-stage Alzheimer's, that when he started with 'sundowners', he would go through the exact same thing. They do not understand or cannot accept, that their parents are no longer with them. So telling them they are dead or in Heaven can trigger more upset and possibly aggression. There is no point in trying to explain, especially if she has reverted back to a time in her life that makes her happy and have her parents. I CAN suggest that you just play along, to a degree. Telling 'little white lies' will become a normal thing for you now. Some of the 'excuses' I use to tell my husband was, I don't think they are at home right now, (they went shopping, or visiting a sick friend, or on vacation and left you in charge until they got back, or after supper we'll call and see if they can come) Anything to keep her calm and feeling that you are helping her achieve her goal, which is going home. I think you'll find her mood will shift, she'll become more calm and in a short time, she'll forget. This is a common thing that happens to folks with dementia, and each person reacts differently to your response, your facial expressions, your mood. Eventually, with practice, you'll become a pro at distracting and redirecting.
Sometimes music therapy helps or cradling a doll, or stuffed animal to help sooth them. You're right, you no longer are her daughter in those episodes, but you are someone that she relates to that is in her circle of comfort and care.
It's difficult to experience that the Mother that you once had is technically gone, and you need to understand her 'new normal' world now...which is nothing like it was a few hours ago, yesterday, last week, or month, or year ago. All you can do is keep her comfortable and find things for her to do, if possible.
If you (or your brother) have Power of Attorney of health..speak with her doctor and ask for help. Contact your Alzheimer's association and reach out to them..they can be a huge resource to you and your brother. Watch some Teepa Snow YouTube videos..she has wonderful training videos that could also help.
You're not alone, and this journey is full of twists and turns that may catch you off guard. The more tools you have in your arsenal, to help address different scenarios that you are dealing with now, or will in the future, the better prepared you'll both be. Take care of yourselves. God bless you for being there for her, it is a huge challenge, but the ultimate gift of love. <3
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I might say that they can’t come to the phone. They did say to tell her that they are definitely going to pick her up. Just like before. Bless all of you. I believe this truly.
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An Elder Law Attorney can advise you on placing Mom in Memory Care and how to finance it. Sounds like Mom's illness has you walking on eggshells and that can only cause anxiety. Start visiting some Memory Care Facilities ASAP.

Google "alzheimer's care in Carrollton GA."
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I am so sorry you and experiencing this with you mother. Breaks my heart. My father in law has dementia as well. But we haven't experienced anything like this. I am sorry I can't offer any help or suggestions.
Maybe pull out her parents obituary and gently read it with her as well as any baby books she might have kept of you and your brother to read through with her might bring joy and less confusion. I hope these ideas are helpful. Praying that the Lord will provide you and your brother with His wisdom and words to help with your mom. God Bless.
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Exact same thing I’m dealing with. She still knows us but always want to go home or go visit her mother. Mom is 96 years old, I always say, your mom would be 130 years old! She was the youngest of seven and always talks about them. Never talks about her husband or her son that died 25 years ago. It is challenging! Plus I take care of my brother who has a Parkinson like disease which he needs fed and help going to bathroom. Best think I think to is is just agree, or make up excuses, I’ve learned that they forget about what they said in a couple minutes. Best of luck with your journey. She’s lucky to have you and your brother.
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My mom was the same exact way. It's Sundowning in the late afternoons and a terrible loop she's stuck in which you can't talk her off the ledge from. The cycle just repeats and repeats. Ativan helped my mom quite a bit, unstuck her a bit from insisting her siblings and parents were all alive but I was hiding them from her. She lived in Memory Care Assisted Living at the time. I was sometimes able to divert her but seldom. 😐

Call mom's PCP and tell him she's Sundowning hard. Google the word and see what steps you can take in house to help her symptoms. One poster here swears by the Richway Biomat Mini heating pad w amethyst crystals in it. She'd lie down on the mat and hopefully calm down and relax. They are terribly expensive but CAN be rented on a trial basis.

https://biomatdirect.com/

I'm sorry you and mom are dealing with such a horrible experience. My heart hurts for you bc I know how helpless we feel to watch this disease destroy who our mother's are at their very core. Hospice, when they did accept mom, did a fantastic job of helping her stay comfortable and as non agitated as possible w/o knocking her out. Sometimes that's the most compassionate thing to do for them. I don't suggest you repeat the heaven story to mom bc she will just keep reliving that "new" death info each time. Just tell her her parents aren't available at the moment, etc. People here who advocate "honesty" at all times are truly clueless about dementia and attempting to apply normal moral rules to a disease of the brain. Senseless. The only goal here is to keep mom relaxed and content at any cost.

Best of luck.
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Same here mother does not know that I am her daughter on many days. I am another family member or past neighbor etc. I play along with mom's thoughts.
Trying to make her understand time has passed is useless.

From what I read it is common for elderly dementia patients to look for their parents. comfort factor.

Somestimes, I tell mom we will see her mom tomorrow when we go to visit. By tomorrow very often the need is passed. until the sundowner's kicks in that evening.

Best of luck to you. know that you are doing your best for your parent.
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If you have Netflix, check out Black Mirror: San Junipero. That alternative world, for them, is just as real.
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AlvaDeer Mar 2023
Black Mirror has been one of my grandson's favorites. He will pick the most fun ones for us to watch together when we visit. Bring on the popcorn.
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GaPeachMom: What your mother is doing is called Sundowning. Let her physician know so that he can determine the next best steps for her.
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My mother, with dementia, who turned 96 today, also says she’s going home..said it today too…to the home she grew up in & that my grandmother, who died in 1998, is cooking for her a meal for tomorrow night. 🙏🏼🥵
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She is experiencing Sundown Syndrome. This time of confusion usually happens in the late afternoon and evening. Some experts say that it may be from tiredness, change in light conditions... It is marked by anxiety, increased confusion and anxiety. Most families have found it helpful to obtain a low dose anti-anxiety medication to be given in the earlier afternoon. Then, that person is more relaxed - less agitation and anxiety - and easier to manage. Talk to her doctor about this.
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My wife of 67 yrs,has had sundowning for several yr.
She has confirmed dementia for seven yrs. She's on meds for it but she'll go all over the house calling for her mother. I tell her that her mother is in PA,that's where she is buried and she's quite for awhile and sometimes it's over.
It's hard to understand but they can't reason and the brain is becoming smaller and their memory is only long term (most of the time).
Be good to yourself.
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My mother is 98, but in her broken brain she’s in her 20s. She doesn’t know me and has even told me I visit too often such that I might be interfering with her parents’ visiting time with her. When she starts telling me how she has to get home tonight, I say something like, “There’s a big storm forecast and you know how difficult such-and-such road is in a storm! They’ll worry. Stay here until daylight tomorrow.”

Or “Who’s their neighbour in the brick house? You know, down the road. (she might give you a name) They got hurt and your parents are helping them for a few days. They’ll get back to you once they’re ok.”

Stuff like that. I find my mother accepts explanations like these. Have a few go-to replies memorized.
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Her mind has gone back in time and you can't fix it. You might just try going along with what she believes now, and as days go on. If she believes parents are alive, all the proof in the world won't convince her otherwise. Trying to explain it frustrates her and you.

Try telling her that you'll try to call them. Later on, if she asks, say you haven't heard back from them or they are out of town and will call when they return. You can also try changing subject all together, like how about we move into the living room or go out on the porch and sit for a spell. Get out some old pictures of her children - it's possible she will remember each of you at a much younger age. Ask her about the kids to get her talking about them. That may not work if she is remembering herself before she had kids. Deflecting is the key - to another subject all togehter.
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She is regressing back to childhood. Memories from long ago are more vivid than short-term memories. The desire to go "home" is often symbolic. She wants to go back to a happy time when she felt safe and had her life before her. It doesn't work to try to reason with her. Try redirection, or call a number where you know the phone won't be picked up and tell her that her parents aren't home right now. Tell her that you can call back later. Maybe do this right before a meal, and then distract her with the upcoming meal. Give her a treat of food that she loves. It's not unusual for people who have deep grief at the loss of a lifelong companion to regress with their dementia. Sadly, dementia doesn't get better. It is likely to get worse, although there may be good and bad days. Have a plan for what you will do if her dementia gets worse. Will you be able to handle it yourself? Has she set up powers of attorney for medical (healthcare proxy) and financial matters? Are you her POA? Does she have a will and a living will? Is the house still in her name, or in yours? You may want to discuss this with an attorney who specializes in elder law. Do this now if she is still able to sign legal papers. Banks and other financial institutions often have their own POA forms (assigning a trusted person to take over if the primary account owner is not capable). You also need to be on file with Medicare and Social Security to be able to speak on her behalf. You can do this with a phone call, with her sitting next to you. My mother made things easy by making me joint owner of her accounts. It was simpler in my case because I am an only child. An attorney can advise. All the best to you and your family.
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