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Mom has vascular dementia and is in Assisted Living. She wakes every morning in a panic because she doesn't know where she is, how she got there and why she is there. She barely recognizes her furniture, paintings and photographs in her rooms. When she does, it's not a comfort to her like it once was. She has these moments of panic and fear whenever she's not engaged in activities. We are averaging 30 phone calls a day to me, mostly asking where she is and why she's there. Now she is refusing to change her clothes, remove her hearing aids or sleep in the bed because she "doesn't know where she is." I'm thinking, what she's really saying is I don't know who these people are and what's going to happen, so I don't want to make myself vulnerable by being in pajamas or falling asleep. How can I comfort her when her memory loop is only 3 minutes long?

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My mother is 97 and her anxiety and paranoia used to have her in knots day and night. It was unbearable for us. And for her.

Just as you would not deny pain meds to a person in agony, there is no reason to deny calming meds to someone with a tortured mind. There is nothing noble about forcing someone to suffer.

I typed an undated letter to my mother on hot pink heavy paper (so it was durable and highly visible) so staff could easily grab it and read it to my mother. In it I explained, in simple terms, how she was hospitalized, then released to the home. How she still needs medical supervision and rehabilitation. I explained that we’re so pleased with the care and her progress. How she can trust the staff to take good care of her. And how I’ll visit her soon.

She may not ask for days. Then some days they have to read her the letter in the morning and again in the evening. The staff says it helps.

My mother can no longer read but perhaps some of your mothers are still able to read a letter like that to themselves.
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ventilatte707 Aug 8, 2022
Very creative, and sweet.
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My mother had advanced dementia and that's when it was very difficult to comfort her and when familiar things were no longer familiar to her; she thought she was living in a 'hotel' and that the caregivers were bringing her to a new & different hotel every night, but wondered how all her things got to the new hotel? She wasn't bothered by the 'new hotel' surroundings, thank God, but she was bothered by a million other things. Ativan at .25 mgs helped her a lot. Then it was increased to .5 mgs as needed, and was a Godsend for her.

Those who are throwing around 'drugged' statements in a cavalier fashion have no idea what they're talking about. In reality, anyone caring for an elder/loved one with dementia is fully aware of what a blessing calming medications truly ARE. Why have a loved one full of fear & anxiety 24/7? Because 'drugs' have a stigma attached to them, or some uninformed people with no experience caring for dementia patients feel that elders shouldn't be 'drugged into a stupor'?? Silly nonsense. Please speak to your mom's doctor about writing a prescription to ease her panic, the poor thing. She should not have to suffer a moment longer than necessary, obviously.

I suggest you read this 33 page booklet (a free download) which has THE best information ever about managing dementia and what to expect with an elder who's been diagnosed with it.

Understanding the Dementia Experience, by Jennifer Ghent-Fuller 
https://www.smashwords.com/books/view/210580

Jennifer is a nurse who worked for many years as an educator and counsellor for people with dementia and their families, as well as others in caring roles. She addresses the emotional and grief issues in the contexts in which they arise for families living with dementia. The reviews for her books are phenomenal b/c they are written in plain English & very easy to read/understand. Her writings have been VERY helpful for me.

The full copy of her book is available here:
https://www.amazon.com/Thoughtful-Dementia-Care-Understanding-Experience/dp/B09WN439CC/ref=sr_1_2?crid=2E7WWE9X5UFXR&keywords=jennifer+ghent+fuller+books&qid=1657468364&sprefix=jennifer+ghent%2Caps%2C631&sr=8-2

She also has published a workbook entitled, “It Isn’t Common Sense: Interacting with People Who Have Memory Loss Due to Dementia.”

https://www.amazon.com/Isnt-Common-Sense-Interacting-Dementia/dp/1481995995/ref=sr_1_4?crid=2E7WWE9X5UFXR&keywords=jennifer+ghent+fuller+books&qid=1657468655&sprefix=jennifer+ghent%2Caps%2C631&sr=8-4
 
 I also suggest you speak with two people at your mom's ALF: The head nurse and the Activities Director. Ask the nurse if she feels mom belongs there or if she'd fare better in Memory Care? MC is better equipped, as a rule, to handle dementia residents and have caregivers who are better trained to redirect them when they're upset. Then ask the Activities Director to make sure she's keeping mom busy all day long. In my Mom's MC, the caregiver would get her up and dressed by about 9:30 am every morning, then out into the activity room for the majority of the day. Mom would see the caregiver's face first thing every morning and feel secure and happy that she was safe. The staff at your mom's place need to know that she's upset in the early morning, and to go into her room with a bright smile and to tell her where she's at, and that everything is fine, she's fine, and to get her dressed & ready for breakfast. This is where Memory Care can be particularly beneficial for your mom.

Wishing you the best of luck with a difficult situation.
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Kristen2037 Aug 8, 2022
I agree with everything you said. I think most importantly, Mom needs to be assessed for Memory Care. AL doesn’t seem sufficient AT ALL.

best wishes xo
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Please get your mother a consult with a geriatric psychiatrist as soon as possible.

The major symptom of my mom's vascular dementia was terrible, paralyzing anxiety. The docs were able to help with a combination of meds.

AND no, mom wasn't "drugged". She was calm and happy.
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Cover999 Aug 2, 2022
Because she was drugged.
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Hello,
i am not sure if this will help (I hope so) when my father was in the hospital after brain surgery sadly caused his dementia to go from non-existent to full blown the doctors and nurses recommended that we or they place a white board across from his bed where he would see it right when he woke up. The white board was written in my mother’s hand writing (they had been married for 40 years) that told him what day it was, where he was, why he was there and that not only was he safe but a family member would call him soon or would be coming to visit him soon. This way while he was still able to read and understand it he knew he was ok, safe and not forgotten. Of course when in a full blown moment of dementia he sadly would not read the board but when he would read it he was calmed down. Also the staff knew when he would be waking up and would try and time their morning routine with him at that time so that he wouldn’t be all alone trying to figure out what was going on. If he was awake alone in his room for too long his mind would jump to awful ideas. Again this only worked when he was aware enough to read and comprehend the board when the dementia was worse it sadly did not help but medications did. Yes he was given medications so he was “drugged” but the medications did not make him a zombis they calmed him down so he could at least enjoy his day and not be filled with fear, panic and anxiety. Personally I prefer feeling calm instead of anxious. But that is just me. Heck most people outside of the medical system “drug” themselves to calm themselves down. Finishing a stressful day with a nice glass of wine or beer. Personally as long as my loved one is not a zombie but is relaxed, calm and able to enjoy themselves why not. I know it is not a popular answer the giving of medications but for myself and for my parents I know it is sometimes a better option for quality of life. Again not so much medication that they sleep all day or are catatonic just enough so they are not going through each day upset and scared.

anyway that is just my 2 cents I hope it helps a bit and I hope you can find a great solution that works and helps you and your loved one.
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Mommom22 Aug 8, 2022
Hi MTL - we’re trying to find the right medication for my mom that, like you said, calms her but doesn’t make her a zombie. We tried a few things but the results were either it didn’t calm her enough or it zonked her. Would you be so kind to share what meds helped your father calm without making him into a zombie? Thank you so much.
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Maybe its time for a medication for anxiety.
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I have to agree, I think you’re taking too many of her phone calls. Is this causing you mental distress? Are they able to prescribe her some meds to help? If yes, can they maybe tweak them? Unfortunately it’s part of the progression of the disease.

I only take 1 phone call a day, if that, from MIL. I find it hard to entertain more then that
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I agree that effective medication (a.k.a. good drugs) might be the best solution here. Not being cavalier.
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She needs more than assisted living. I went through the same thing with my husband who just recently passed away. It’s horrible to watch and more horrible for the person experiencing this kind of fear and anxiety. My husband was in the veterans health facility for long-term care and was treated with such dignity and respect. They picked up on every little change he was going through and gave him medication appropriately but not overmedicated. He was able to be calm and comfortable by the amount of light medication he was given. I would visit daily and hold his hand and bring him treats and sit with him and try to do puzzles and coloring in such activities however the moment I left he forgot I had ever been there and the anxiety started all over again. It’s heartbreaking and I’m so sorry that you have to go through this with your mom. Sending positive thoughts and prayers your way. Try to get your mother moved to where she will get more care and more attention. Assisted living is not the answer she needs more now.
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First, one call a day is enough to answer. It might be time frankly to block her or better yet say the phone needs repairs, hence no phone.

Does your mom enjoy activities that seem purposeful and that can be done by herself at night, like folding towels?
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When working with children with recurring nightmares, it tended to be at the same time. We would wake them a little prior and chat and comfort them. Is it possible for the aides to do this? Even perhaps to wake her and play a comforting message from you? It might be worth trying. If it isn't very unreasonable, you might call at that time and chat with her for a bit. Discuss it with the person in charge of your Mom's health aides. Good luck.
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Katefalc Aug 8, 2022
They will not do this in “ assisted living”. She needs more hands on care now
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