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We're about 12 years in with my sweet mama on her Alzheimer's journey. I think we can all agree this is a horrible disease that's hard on the family as well. Although my mom has 24/7 care (her baby sister cares for her during the day), she is starting to become more anxious than ever, especially during times of sundowning. She constantly asks to go home (and she is home), to see her mom & dad (passed 28 years ago), her brothers and sisters, etc. Nothing I've tried or said comforts her. She asks the same questions about 35-50 times per evening. When I go to leave, she always asks if I'm coming back tonight. This breaks my heart. She knows she's in good hands with my father who she's been married to for 59 years and keeps telling me he takes good care of her. I'm there with them for a few hours every evening 6-7 days a week (after working my full-time job), and on Saturday I'm there for most of the day after doing their grocery shopping, prescription runs & banking. My brother comes into town on Sundays for a few hours to help dad with her. I'm looking for a way to comfort her anxiety. She's on an anxiety meds, gets some time outside when the weather is nice, etc. My leaving leaves me feeling guilty, and by the time I get home to my husband, I'm physically and emotionally drained as well. Answering her questions honestly, telling her she is home and telling her that her mom is in Heaven, and telling her that I won't be back until the next day -- breaks my heart. Seeing that she is not comfortable no matter what I do or say is wearing me down. She constantly says she's bored (even though I've provided lots of activities) or lonely. After 12 years, you would think one would know how to comfort those who we know and love dearly. Suggestions appreciated.

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Nothing you say or do is going to make her understand and I know how this upsets you as it would do to me. Just ignore the questions and don't answer, or deflect with another comment. Or tell her she already asked that ten times. I can't handle this and I don't know what to tell you but I understand how you feel and how it would be horribly upsetting.
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Imho, you may do yourself a favor by speaking with her neurologist.
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White lies and distracting for sure.
At least then she doesn't have to relive pain.
Agree, lie and distracting is key.
I agree your dad is probably overwhelmed.
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I feel for your dad. Almost 4 years I'm carrying for my mom and I'm the only one doing it! It drives you nuts no matter how much you love the person. Care takers need frequent breaks. Your dad is old and needs at least several hours a day to get away. Hire someone to care for mom for a few hours a day. I don't know how in this pandemic but maybe you could do that for him for now. Somehow balancing the time you all spend with her to have some sanity.
I'm in the same delima and have sciatica, herniated disks and knee issues on top of that and can't hire anyone now(due to the Covid-19)! Its extremely difficult. I used to walk with her to the park but now due to the tear in my knee, I can't! I try to keep her busy with dancing musics for her to exercise, or I ask her to write sentences, names of her kids or a letter to someone and that's good for her memory. Also folding laundry or cooking with me(making salad or frying something next to me(but supervise) helps her to be occupied and feel helpful. They need a scheduled routines. That way they know what is expected daily so they don't get bored. I don't know about your mom's capabilities but I ask my mom about certain chores like vacuuming her room with a light weight vacum. She feels she has accomplished something and makes her feel happy after. I remember her neurologist told me not to do everything for her. Ask her to get involved. It's a good excercise for her brain and body.
You can't be honest about everything with them. Your conversation with them is completely in another world! White lies are the key to calm them down but always with the hope and calm and loving ways they feel better. If she repeats something over and over again, try to distract her with some activities or a happy show on the TV/YouTube like dancing or singing ones. Good luck...I hope I helped some🌺
God bless🙏
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I'm more concerned about your dad to be honest. At least you get to go home. He's with her 24/7.
He needs a break! I think it best you move them to AL if at all possible or hire someone to stay with them a few hours each day. I'd feel more guilty about leaving him with her. At least you get to go home and escape. Thank you for all you do!
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We found that living in the moment is best. What would make them happy in the moment - if the truth hurts, don't say that. Just make up a comforting lies as they cannot remember past the 5-10 minutes. Bring her back to happy moments - we tell our parent that the person is at work and they understand that or we say i have to go to work now but i will be back after . This satisfies them - try those things that will make them happy in that moment. It is very hard but keep trying - we also found that saying you are home does not work - we just say we will go later or go for a drive and say lets go home and all the way there we call out the streets until we get back and it seems to work. sorry about all your struggles.
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Someone else posted this a while back: https://www.amazon.com/alzheimers-activities-Toys-Games/s?k=alzheimers+activities&rh=n%3A165793011
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I have had tremendous results with CBD OIL.
Half a dropper of oil under the tongue works wonders
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lealonnie1 May 2020
GREAT idea!
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Thank you everyone for your love, support and suggestions.
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Have you talked to the doctor about the anxiety medication? Either it can be changes or dose increased, or a change in the way it is given, partial dose in the morning and another dose later.
Sometimes medications stop working and a new medication or dose has to be tried.
Answering ALL questions honestly is sometimes not the right thing to do.
"Therapeutic Lies" often come in handy.
Mom and dad went to the store....mom took dad to the doctor...mom and dad are at the movies....
Many times when a person says they "want to go home" they do not mean a place. They mean a time. A time when the felt well and safe. Home means safety to many people. Try telling mom that she is safe, she is loved and she is alright. When you tell her this hold her hand and use a nice quiet lower pitched voice and see if that helps.
It sounds like you have a good support system.
Do not feel guilty when you leave. Reassure yourself that you did everything you could to the best of your ability and you have nothing to feel guilty about. (Try this..look at what you and everyone else is doing as if you were an outsider looking in...do you see anything that could be done differently? anything you are missing? I bet not, so don't make yourself feel guilty. If you were in your mom's position would you be happy with the care that you are getting? If so, again you have nothing to feel guilty about)
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This is so challenging and you must be tired with all this caregiving on top of working. Don’t forget to take some time for yourself - you probably don’t need to visit each evening if your mom has other loved ones living with her. And in addition to the other very helpful answers here, I’d arrange for a Telehealth appt if possible to discuss her medications with whoever has prescribed the anxiety meds...a change of meds may help her feel calmer consistently and sleep better. If she’s been given these meds by a general practitioner, I’d recommend seeking an appt with a geriatric psych specialist - whether physician or nurse practitioner. Good luck!
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I'm in the same position with my mom--12 years of caregiving, sundowners, questions, etc. --but my mom lives with me. What works for us is living in her reality. When she asks to go home, I invent reasons why she can't, such as the floors are being refinished therefore she's staying with me for a few days. My sister comes every day, and when she leaves she tells mom she's going home to fix dinner for her husband and will see her tomorrow--even if she knows she won't be over the next day. For boredom, I'll empty my sock drawer into a laundry basket and ask her if she'll help me by matching up the socks for me (she loves doing that), or give her a child's toy that has laces, buttons, zippers, etc. all undone and ask her to "fix" them. When she asks for deceased family members, I tell her that they are away for the weekend and that well see them when they get back. It's not easy, and yes, we both get frustrated at times, but I find that little white lies don't hurt and actually help calm her down. She's unable to reason, so telling her the truth often makes her more anxious. I hope this helps...hang in there!
Sending hugs your way...
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You are giving your mother so much care and love and attention, as is her husband and other carers. Yet she is so deeply into Alzheimer's that she cannot appreciate it. Rather than spend more time with her (or feel guilty when you leave) do try to calm yourself and consider what might help her. Perhaps you could try:
1. Music is often helpful, especially songs she knew earlier in her life.
2. Many people with Alzheimer's need more sleep in order to have the energy to relate. My wife, who is 9 1/2 years into Alzheimer's still relates remarkably well, but she sleeps 13 hours each night (from 8pm to 9 am). Not sleeping appears to be a problem with your mum. Perhaps medication would help.
3. Trying to explain to those with advanced AD that someone has died or that they are "home" is unlikely to communicate to them. You have to try to get into their world and then communicate in that world to them. Sometimes this is called "therapeutic lying" but it is more therapy than lying. Perhaps you could answer their question with a distracting question (e.g. "Your mother was a loving person wasn't she? Tell me about her?)
4. Reading simply stories or watching understandable tv programmes often helps. Have you tried music or ballet on Utube?

I hope some of these suggestions help.
Love and Prayers
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God bless you in your devotion to your mom. Even though you realize that with this disease, she is who she thinks she is, and all others and all else are what she thinks they are. God is the only anchor. Hold Him close.

Grace + Peace,
Bob
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I applaud you for your dedication to your mom. 12 years is a very long time. I also applaud your dad who, at his age, can't possibly have the energy to care for his wife. But he does it anyway. Do they have the assets to pay for private pay memory care? If so, I would recommend them. Some facilities have shared rooms where both husband and wife can reside. For the present time I would recommend the book "Learning to Speak Alzheimer's". It addresses many of the situations you mention. Also, you can search for "Teepa Snow" on YouTube. She has many videos on how to tackle dementia behaviors.

Sadly, there is no "owner's manual" for AD caregivers. It's all on the job training. The book should be helpful.
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jacobsonbob May 2020
Yes, as the saying goes "if you've seen one Alzheimer's patient--you've seen one Alzheimer's patient" (i.e., not ALL Alzheimer's patients, because they are all different!).
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