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My brother and I take care of my mother (92) for the past seven years. I read your forum and always find helpful tips. Her question is "when do I go home," or "what day are we leaving?" We have tried changing the subject, I will take her outside, when it gets to much I will leave the room come back and she goes right back to it. You can tell her she is at home, and as soon as you finish the sentence she will say but when do I go back? If the answer is not what she wants she starts crying. This will go on sometime from the time she get up to the time she goes to bed. Non-stop. Talk to Dr. he has given her meds to maybe calm her down, doesn't work she won't stop talking long enough for it to calm her. Home is where she was born. Sisters, church members other relatives talk to her same questions. We are all at the ends of our rope. If she doesn't start as soon as she gets up at 2:00 pm the questions begin. Does anyone have any advice or solution. It will be appreciated.


Blessings to all.....

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She doesn't mean your home, in all probability she means the home where she grew up or spent her youth. There is no point is trying to explain this to her so the question is what answer will give her some peace. You could try telling her something along the lines of when the maintenance has been completed, but you may simply change the question. So possibly an I don't know we have to wait for X to let us know might be more effective. She will still ask the question every night - it is a stage of the disease which hopefully will pass.
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Wail!

Repetitive questioning is the one single aspect of dementia care that I know I could not handle for more than an hour or two a day. You must want to burst into tears.

Teepa Snow is a good resource, you can find her seminars online.

I don't know if this will help, but do adjust your expectations. Your mother WILL ask these questions over and over and over. Your response can try to divert her or reassure her, but nothing will make a difference to her asking, only to how she feels in the present. You can only work on containing or appropriately releasing the unbelievable frustration it must cause to you.

A huge shoulder rub of sympathy to you.
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She is not wanting to go to a physical home. When she says home she is using this as a word to mean "where I feel safe and not confused" because she cannot express those emotions. Sometimes medication is the only answer for this level of repetitive anxiety. Try redirecting by giving her a small repetitive job to do. For example, " Sure, we can go as soon as I finish folding these clothes, here please help me told them (and keep refilling laundry basket so it is never ending). Or after we rake the leaves, or sweep the floor, or wash these dishes.
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Thanks for all your suggestion. I assure you I will try everything. Just nice to know that someone cares about how I feel these days. I take excellent care of my mother, but know one says anything to me or ask how I am doing. I guess it is just what people expects you to do since she is my mother.
Blessings to all
Thanks
t
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T, hugs. That is definitely a brain numbing situation to go through daily.

As you said, She is having sundowning, it happens at the same time every day and the patient is agitated and can not be comforted, exhibiting fear, paranoia and other undesirable phenomena.

Have you talked to her doctor about prescribing something that could calm her down? I have read on this forum that people have had good luck with CBD or edible marijuana products.

I think that anything that will calm her fear is worth trying. Do some research on sundowning and effective treatments.

Is it possible to change the day so something different happens at this time? You have received some good ideas. Knowing what this is, is the 1st step to living through it. Maybe the edibles for you. My aunt said that they just chilled her out completely. She tried it because my cousin has behavioral issues and my aunt wanted to know how it felt because my cousin is soooo much easier to live with when she has enjoyed her edibles.

I hope you find something soon that calms her unrest.
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Mjlarkan Aug 2019
You made me laugh. Maybe I need the edibles!
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Dementia is a progressive disease that erases your loved ones one to two inches at a time. I took care of my Grandmother and now my mom.The repetition is a tuff one. I finally would change the subject which worked for a while, then I made an albin with all her relatives and immediate family writing in birth dates and deaths, which worked until she could remember to pick up the picture albin. I learned patience and compassion for how much she struggled to hang on to her mind. I also learned to live in her world and not to correct or bring logic into any conversation. I just learned to truly love her, both of them. Mom is now bed ridden and can't speak, she does speak with her eyes and some times I see her smiling at me. She was a great Mom and deserves the best I can give. Not every situation is the same and putting a loved one in a home for someone else to care for could be the best thing for you. I got very sick and had to put mom somewhere and found a group home. She was not happy at first, but when it was time to bring her back she didn't wat to leave! The group home only had 7 residents and she made friends and the staff kept them busy. I couldn't afford to keep her there. It was so nice. I got to be her daughter again instead of her caregiver.
This disease will progress and it can effect how her body functions- to changing her personality, sundowing etc. Hang in there, your not alone.
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Zdarov Aug 2019
Gosh I love to hear a story about a small group home. So glad it worked out for your mom, and hopefully you’re all better too.
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I agree with other post from Plum and that your Mom is searching for a place where she is safe and not confused. How about music to try and calm her? Maybe a photo album of earlier years? I’d ask her Dr for another med to try to reduce this anxiety. I too like the distraction idea of folding laundry. I’ve been using that to keep my Mom busy and feeling useful. Good luck as this behavior must be exhausting for everyone.
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You and your brother are taking care of your mother, in the same place where she grew up? Repetitive questions equate to stress/anxiety. Asking that same question over and over again is equivalent to an Aspie rocking back and forth and/or spinning, What is triggering her to feel stress/anxiety? What is causing her to feel unsafe? It sounds to be a bit more than Sundowning.

To where is she asking to return? Give her a purposeful repetitive task from her generational habits that will occupy her hands. Folding laundry is stereotypical, yet very calming, especially if the basket is filled with never ending clothing.
(tip: bring onto her unfolded laundry from the entire household). If she hated folding laundry, then find something that she liked to do. Something that might stop the loop is rephrasing her repetition as a question to her and asks why she wants to go.

You sound as if you are enduring water torture, yet you know that every day when and what will happen. similar to a toddler asking why, why, why? Anticipating it as aa normal everyday occurrance will require some discipline, and patience; how do most mothers or daycare workers cope with crying all day? They adapt their thinking.

Caregiving is difficult, Hugs.
When Dementia minds are calm the world is a happier place.
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It is Like this in Nursing Homes, Rest Homes, Etc, I have Heard it all. All you can do is Ignore it, Or put Ear Plugs in, My angel...One day when Mom is Gone, You will "Long..."
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Our doctor took my husband off aricept and put him on Zoloft. What a difference. The repitition really slowed down.
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Maybe she has claustrophobia and just can't tell you that. When I am in an unfamiliar place and night falls I get very anxious. This is why it is hard for me to travel. Maybe it is a lack of vitamin D (lack of sunshine). If she has depression then maybe she needs a heavy bright light (at least 10,000 lux). I like to talk too, it makes me feel better. I have no family here and pad around the house all by myself. I play music all day and night. I like steel drums the best. https://www.youtube.com/watch?v=IR8tkMxC7D8 for the daytime and stuff like https://www.youtube.com/watch?v=RQtP1cJTw1c at night..

You might try music with your mother. She might also have severe circadian rhythm problems. Get her a Fitbit and see what is happening to her sleep cycle. To feel good she needs both deep and rem sleep. Often I go to a noisy restaurant and read a book there with my dinner. I was married 38 years (divorced two). Joined a dating site, but the fellas out there are just looking for sex and I am quite the reserved lady.

I will be moving in with my daughter. I am worried about the traveling and the isolation. But I don't have much of a choice because I can't keep this house up, so I have it on the market and will move after it sells. Wish I could meet a nice fella who wants some company. I plan to join a book club and do some volunteer work when I get down there. but my circadian rhythm problems usually get in the way.

I can easily sleep 12 hours a day (never the same 12 hours each day). It is especially bad when I wake up at 11PM (nobody is awake, stores are closed, it is dark). I play "Words with friends" on the internet. Lots of fellas out there willing to chat, but I am afraid of giving out my phone number which is what they are keen on getting. I talk to them on "Google Hangouts" as all that is needed there is an email address. Maybe I will meet someone nice after I move. Actually all this typing has made me feel better. Maybe I will write a long email to myself every day. Perhaps this is why some people keep diaries. Well hope some of these ideas work. Keep trying, you will find something. Remember keep your face relaxed and no eye-rolling, as this just makes her more anxious and leads to more talking.
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Everyone is getting hung up on the question, the way I see it this is more of a verbal tic and the question itself is just an expression of some unmet need. Repetitive vocalizations are fairly common in dementia, anyone who has visited a long term care setting has no doubt heard with dismay the repeated pleas for "nurse! nurse!" or "help me please, help" or "take me to the bathroom". The lady across the hall from my mom "sang" the same pattern of sounds for hours at a time, I was surprised when I discovered she was actually still able to communicate with words!
With my mother it was "turn me over", which was initially a plea for just that since she couldn't reposition herself, but eventually morphed into an almost constant, nonsensical refrain. It no longer meant she needed repositioning, but it did mean she needed something and I often had to play 20 questions in order to discover what it was.
Your mother sounds crippled by anxiety, instead of trying to rationally meet her need to go home I would be looking for a way to alleviate that. My mom was given mirtazapine to help her sleep at night, it also helped to cut down on "turn me over". That particular medication may not be suitable for your mother but something else may be. Ad please don't think of it as "drugging" her, the constant need to go home is certainly as troubling for her as it is for you.
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Jannner Aug 2019
Unfortunately there is still so much stigma attached with any mental illness or symptoms some attack meds for it instead of researching. My mother takes that as well and they just added an anti anxiety . When she started the mirtazapine she was more lucid and admitted she felt much better (4 years ago) . Those were the “ good old days” lol
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You may want to look into an Alexa. I got one for my brother, advanced dementia, and he can ask her the same question day and night. She never gets annoyed and answers in her sweet voice. I believe you can program her to say things.
I got this electronic through Lynn Greater Senior Services ( our local senior advocates). It was a pilot study and it works wonderful. I don't know if it will work for everyone, but I programmed her to play certain music at certain times of day, set up games, Alexa can read her a short story from her favorite books, and she can ask her anything she wants. If Alexa doesn't have the answer she will tell you she has to look into that.
The one thing I learned from GLSS is to divert a negative conversation or action. If you can't divert the conversation try to go alone as best you can. She doesn't and can not help what she is saying or doing. God bless and hang in there. There is a ton of support for dementia caregivers. I strongly recommend reaching out to them. It will help you stay sane through this journey.
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cherokeegrrl54 Aug 2019
Using alexa, imo, for these repetitive questions is nothing less than brilliant!!! My mom repeats herself a lot, but i deal with it. Asking the same question repeatedly, i would not be able to deal...
excellent idea!!
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"HOME" may be where she is safe
Home may be where she is well and healthy.
Tell her that she is safe, you will care for her and she is alright and that you love her.
Hold her hand, sit down and have a cup of tea, coffee, or whatever you mom likes.
If it is tea she likes you might want to try one of the herbal tea blends like Sleepytime (as long as it does not conflict with any medications she is on check with a pharmacist)
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Could you just say, when she asks "when can I go home?" say "tomorrow". The next day say the same thing. No reason you have to make sense.
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Talk to her dr again. He may need to change or up the medication

meanwhile change the subject if you can but I agree with others , it’s probably no longer a real “ question “. I’d kind of just ignore it and carry on with a conversation if it does not agitate her. If it does ( my mother is narcissistic so difficult without the dementia aspect) her neurologist recommended put her in a safe place and get out if her line of sight. My mother is in an ASF so it’s time for us to leave.
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I don’t mean to imply anything negative toward any but I can’t help but wonder why so many have to guilt trip with the “someday you’ll long for it “ comments. No they won’t.
They may miss their LOVED ONES but they won’t miss the disease process unless they are sadistic. Can’t we lay off the sentimental scam and just try to give a helpful answer to help the person get thru the terrible situation they are in?
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hannahBN Aug 2019
Yes! Well said.
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In regards to the medication, have you tried giving it in advance of the onset of the behavior or have you asked for a trial of another medication? Have you considered a visit to a geriatric psychiatrist?
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Wanting to go "home" and wondering about leaving are often symbolic. You might ask her "why she wants to go home." Maybe her answer would be a clue about what is making her anxious or what it is she wants to go home to.
"When are we (or an I) leaving?" Can be symbolic for anxiety about dying. Maybe an answer like " We won't leave until everything is ready" would help.
It won't work to try to convince her that she already is home or that she is not going anywhere. You need to speak to her perceptions even if they don't match the reality of the situation.
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Sounds familiar!!!

It always starts out fine, oh so glad to see you! But after about 10 minutes, the "question" starts - when am I going home?? Sometimes I can divert & tell her that you need to get stronger before you can go home, but I ALWAYS try to put the blame back on her doctor. It hurts when she starts with "How could you do this to me"? But, I have to remind myself, I DID NOT give her a stroke, and I cared for her 16 years after that. There are some things that as a parent your kids should not have to see or do & I know she would agree with me. There is usually tears to try to lay on the guilt, but I know she is safer here than at home, she could not take care of herself any more & it became a 24 hour task. She tells me how much she hates it there, but I catch here time to time having a good time & the staff also fill me in. Some meds can cause hallucinations too, my mother cannot take Lunesta... "look at off the moths on the wall", and other crazy things...

Can you get her interested in something to take up some time, maybe a puzzle and have music on in the background? Frank Sinatra helps soothe my mom...

It is not easy, but this forum definitely helps - so many people going through struggles with their parents & loved ones... Take a deep breath & hang in.
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helpinghands1 Aug 2019
When she says negative things or blame you for something- remember that it is the disease. You are a blessing to her. If a parent can give love to a baby sight unseen and nourish it until birth, continue to love and protect the baby into adulthood and there to be their best cheerleader, a listener, provide a shoulder to lean on and love unconditionally without boundaries, when they need us we should step up to the plate. I'm sure it wasn't always easy to be our parents. I had a special saying of my own I use to say when I left my mom every day. It provided me comfort and assured me it would be ok. My mom used to tell me- When you go through a storm don't focus on the storm, look for the rainbow. Blessing!
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Maybe you could type out an answer and just put it in front of her so she can read it each time she asks the question. It might not stop her from asking it, but it least it (hopedly) will save your voice.
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I told once on this site about a lady who asked to go home constantly. The caregiver would have her pack a bag and wheel her around the assisted living place and back to her room. "Thank you so much. I just needed to be home", was the outcome every time. I think it depends on the person, the stage of memory loss, and willingness of a caregiver to go along with what seems a fantasy. Maybe you could try something like that, even if it's just to have her busy packing to go to this imaginal home.
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Hi ktsmom2004 - my mom has Alzheimer’s, going on 10 yrs now. She used always say “I want to go home”. I would tell “this is your home, where you live and you are safe here”. I was told they want to go home because they don’t feel safe. My mom would also say “when are we leaving?” Or “we need to go” so I would just say “okay we are leaving in 5 mins” giving her a time like 5 mins or whatever time, let’s her know that it’s coming/happening and then I would try to redirect her thinking, like “help me fold these towels” or “let’s go out in the backyard”. Sometimes this helped sometimes it didn’t and yes she would ask those same questions all the time. You may want to try melatonin, that helped my mom to calm down and still does to a point. She is on Lorazepam now and thats helped a lot once we got the dosage correct. Hope this helps and good luck.
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buy a good quality lavender essential oil, organic if available and with a roller ball. whenever she gets upset, swipe it up and down once or twice on the bottom of her feet and at base of big toe. You can also put on wrists and back of neck. We use this for my mom all the time and it helps keep her from getting upset if we use it regularly, especially around 4-430pm. We also use it at night to help her sleep better.
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Mjlarkan Aug 2019
Does your mom have dementia? I never thought about essential oil for Mom.
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She may think home is her childhood home oR she very well may be thinking of the home she reared her own family in. And...she could go back and forth between the two. There is no telling. In her mind, she may be off somewhere within and stuck in a memory from her own childhood when she got homesick at camp or something and is reliving it...but stuck in the replay of it.

Can u just put some old family photo albums out...of her childhood and the home she raised yall in...and let her look through them constantly. Any old family movies...hook up and just leave her in the room to watch as long as she needs to and chk on her. Sadly, at some point...they sometimes are better off in a memory care home...and u can visit.
Only u will know if it is needed and when.

My granny kept asking me when she could go home when i visited her at the memory care home...I just told her what she wanted to hear...visited and left...and went back faithfully...She was better off their at that point, but up until that point, we had some nice ladies come in daily to her home on the farm she raised us all on in her beloved home for as longgggg as we could...about 3 yrs.
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My dad asks those same questions. This has been his home for over 30 yrs! He just recently started having cognitive issues so I still bring him back to reality the best I know how. He has requested that I do so when he is totally lucid. He gets worse everyday tho so not sure if I can keep this up much longer. He asks everyday where his car & car keys are cuz he has to go somewhere. He can’t even walk and he hasn’t drove his car in four years,!!! It’s so sad how their minds work or don’t work. What a horrible way to live! Don’t you think?
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Mjlarkan Aug 2019
I’m so sorry. Yes , horrible.
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My 90 year old mom asks repeatedly where her mom and dad are, and when she's going home. Some days this behavior is worse than other days. .25 Xanax helps at times, soft music, and sitting with her and telling her how she is so loved and safe also helps. It doesn't always stop the behavior though. We bought mom a robotic dog, that barks, moves it's head, and wags it's tail. She LOVES that dog! It has been the best thing for her anxiety that we could have done. She was always a dog person, so to have a puppy that just sits on her lap and moves a little makes her very happy. Some things will work at times, and not at other times. When she says she wants to go home, we often tell her we'll leave in just a few minutes, or we take her for a walk around the block or even just around the house and to her bedroom. She feels comforted and the distraction is often all she needs. We haven't found anything that works every time, but it has lessened as the disease progresses. Hope this helps!
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Caregiving2 Aug 2019
Wonderful!! My mom has teddy bears to cuddle in bed at night. I can tell they help her feel safe, calmer and like she has company. It’s heartbreaking yet so sweet. A teddy, Pooh, Snoopy or a soft doll. They are going back to childhood and these things help with anxiety. Very therapeutic.
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It will likely take some trial and error to find the right combination(s) of ways to redirect her focus. Certainly try them all, and even if one doesn't work this time, it might the next!

Although I am not a big fan of medication, sometimes something can help (some can make the issue worse too.) This also may take some trial and error. If it works, it IS useful and I would be on board! Mom has only needed Lorazepam for a UTI she had once - she was OFF the rails every afternoon, well into the evening, the whole time! Nice thing about that med (may apply to other anti-anxiety meds) is that it does not take time to build up in the system and there was no "weaning" off required. First and every dose took about 10-15 minutes, calmed her down and then she would head off to bed at her normal time. Downside is it can be a fall risk, but it never caused her a problem and was the minimal dose.

Mom's repetition of statements or questions was the hint I got that something was amiss. Initially we tried to manage the dementia while she remained in her condo, but refusing to allow the aides in (only a 1 hr med/sanity check!) resulted in looking for a place. It is puzzling how they get stuck on something and can't move past it - I liken it to a scratch in a record, which will keep repeating until you can "bump" it forward. Sometimes a "bump" can work for dementia, sometimes it might take several or different "bumps."

Thankfully all mom's requests to go back to her condo were directed at my younger brother. She never asked me (somewhere in the depth of confusion, I think she knew better!) Nine months after moving into MC, she caught me unaware with "Can you drop me off at Nana's on your way home?" Thinking quick, I looked at my watch, said it was a little late in the day and not exactly on my way, so maybe tomorrow? She said ok (this response leaves the door open - any kind of deferral, such as 'after I do xxxx' or tonight or tomorrow. Most have issues with dates/times, so tomorrow or 'later' is a "positive" response, Mom followed up the 'ok' with 'Do you have a key to the place in {town}, you know, on {street name}, referring to their previous home, which was sold about 23 years before that! She has never mentioned the condo since.

Sometimes when we go to appointments, outside the facility, she will mention going home but when we get there she might say 'Am I staying here tonight?' She has a very vague concept sometimes that this isn't really home, but doesn't often pester me about "home." She does pester the staff about calling her mother and has tagged her mother to that previous address for some reason (it was my parents' home, not her mother's.)

She still gets into the broken record skipping quite often. As annoying as it can be, you have to try to let it slide, tune it out as best you can, try giving a generic response, repeat your response as often as she asks or even just Uh-Huh and attempt to steer her to another task or topic. The "scratch" will reappear, so you just have to be diligent and "bump" it along! Hopefully many of the suggestions will work and perhaps her doc can find the right medication to at least tone it down (bad enough when it is during 'normal' sundowning times, but if she starts this on waking and continues all day??? EEEk, prepare the rubber room.... For ME!)
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Mjlarkan Aug 2019
Great advice! Thanks
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Search YouTube for Teepa Snow videos on redirecting. Try playing music from the era she grew up to calm her; she might even remember the words. Somehow music memory stays with them. Ask questions like who’s at home or what do you like best about home or just tell me about home. It’s often a childhood home with parents. What’s your mom like, what’s dad like? If she does open up keep notes on details so you can redirect when needed with “tell me about when ...”. If they can just talk about home I’ve found it very calming with my mom. And yes, ask doctor about meds to help calm her. She’s agitated when she’s repeating or scared or worried. Good luck.
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Mjlarkan Aug 2019
What a great tip!
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You guys are My People. Your insight and willingness to help this person you’ve never met! I learned so much. I find I can go months with redirecting or a sweet calm answer to my mother’s repeated worries about her money, her house, her bills. ... Then one day, I can’t handle it and get extremely irritated with her. Then a few days later, I can go back to being extremely kind. I feel pretty certain all of you know exactly what I’m talking about. Bless you all for taking care of your Loved One.
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