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My mother and father, are taking turns with my aunt and uncle to help assist in the care of my grandmother. She has early dementia and Sun-downers. There are times she doesnt recognize any of us and other times she still does and knows she close to forgetting you. Its incredibly hard. Recently, she turned more scared and agitated thinking everyone is out to get her and hurt her and wants nothing to do with my mother who is primarily taking care of her during the day or lashing out at my grandfather (her husband for over 50 years). The last few days have been unbareable for my mom. Grandmother is scared and thinking someone is coming to get her, Mom holds her and assures shes ok. she sleeps and snaps out of it. Then shell be fine for a few hours watching tv and humming church hymnals. Its so on and off. At this point I know that my parents and her other children are scared to get help from an assisted living facility because of how my Grandfather on my mothers side was treated recently before he passed.


Surely there are specialized doctors in this field who can help? Who are compassionate and know that her aggressive behaviors are not her. What can we do. Anyone else going through this? It's hardest thing Ive ever seen my parents go through, and its every day. Its hard to see a solution.

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Daisycat here the same thing happened to me. A month ago I was at my mom's the next night she lost it in the hospital for a week the doctors said she had to have skilled nursing care they moved her to long-term care a week ago. It will get worse with your grandmother and not all nursing facilities are bad. My mom is happy and she is doing better now than when she was at home.I was to the end of my rope with her.It was affecting my health I had to go on high blood pressure medicine.It was hard this last month getting her in nursing home but for the first time in my life I can finally feel relief.No I didn't ever want her to have to go to a nursing home but she is there and I have accepted it. My mom was like your grandmother she saw men coming to get her they had knives and dogs it was horrible. Maybe your family can reconsider a facility for her.It will take a big toll on their health and marriage.I wish your family the best thank you for your post it makes me feel better to know that I am not alone and you are not alone either. Best wishes to you
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A competent medical doctor can prescribe medications to help your grandmother's anxiety, agitation and occasional outbursts. These medications are anti-anxiety medications. It might take a little time and working with her doctor to find the right dosage and right medication to help her.
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naomij: The specialist that you're looking for is a neurologist. An appointment should be scheduled for your grandmother posthaste. At least three came up in Trenton, NJ when I googled it.
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Try to get dr to prescribe meds to calm her down. Maybe if she can, take her out for some air & sunshine by 🏖️ beach. 🤗 hugs
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Yes. Millions of people are going through this. Everyone has a different situation although the core is the same (decline / dementia / needing more care).

Talk to her primary MD.

Get medical documentation / authorization that she has dementia.
(Although this could be a 'fine line' as facilities do not 'like' that word and words like a mini stroke are often (or used to be) used instead ... for insurance reasons.

Research Associations in your area (i.e., dementia, Alzheimers, etc.)
Is she has a social worker, contact that person.
It would be my recommendation that you/r family start to look into health care facilities and Medi-Care / her finances to see where she might be qualified to move into.

If nothing is done to change this situation, everyone suffers, especially the caregivers who burn themselves out and their health suffers as well as their quality of life - which is not good for anyone.

In the interim, see if you can find volunteers to visit (colleges: contact nursing, geriatric, social work dept heads) ... or pay an hourly $ to visit so direct family members get a respite. It is essential that care providers get 'time off' - it is so stressful ... even for those of us aware of it and doing what we need to do to manage our own mental / physical / psychological / spiritual health. Any / all outside help will help everyone.

Gena / Touch Matters
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Definitely confer with her PCP and or a Geriatric specialist to get a " level of care needs" assessment for her; although you all obviously see and are addressing her extensive care needs, getting this formal assessment from a licensed professional will help you go forward with options: then it will be up to the POA to make the care decisions that best provide her with safety and quality of life. This may be addressed by PCP or geriatric specialist with possible medication (s) or , it may even be time to have a hospice of your choice assess her for possible admit to hospice care; this may be provided in home or hospice can also help the family look at facility placement or at minimum provide some " respite" in 5 day increments paid for by hospice. You can call a hospice of choice and they will be glad to talk with your family and provide the hospice care program.
For her safety and quality of life and for the well being of your family do seek one or more of the above options to start getting the help she and your family need now and will need even more.
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Putting a loved one into memory care is not just beneficial for the person who needs care. It is important for the caregivers as well. Your life is often completely derailed due to the stress and responsibility of caring for someone who needs more help than you can give.
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Naomij I don’t think it’s wrong for you to want to help your mother as well as your grandmother as long as you remember that it doesn’t all fall on you. Your grandparents have 5 children, I believe you said, involved in their care and the they will be the ones making the decisions not you which may be difficult and frustrating the more involved you get. However being your mothers sounding board, doing some research as you are and making suggestions is loving and supportive. You just need to remember where the line is for you, supporting your parents not taking over any caregiving or expecting to have a say in the care of your grandparents.

I say grandparents because they are a unit and that’s the way they are being treated by the sounds of it, that’s a good thing. The first thing I would strongly suggest is to find a Geriatric Psychologist as Barb suggested, this is their specialty and they will include the families caregivers in meetings as well as long as it’s ok with their patient. Both your grandfather and your grandmother should be patient's ideally. A good Geriatric Psychology practice will manage medications as well as help the family decide what the best living situation might be. We recently started my mom with one and they also have support available for the family if we choose to take advantage.

I am not a provider or anything but along with checking for a UTI or some other infection the thing that struck me as a possible contributing factor to your grandmothers rapid cognitive issues might be the moving from house to house. It seems like the perfect way to keep them home with family and share the heads on caretaking but for someone with memory issues any change in familiar surroundings and routine can be very difficult. Just a thought.

You are obviously a caring and loving daughter, your mom and dad are lucky to have you and I’m sure you would say you are lucky to have them.
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Naomij, how are things going with GMA?
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your family can’t take care of your grandmother… she’s not safe and well cared for …neither are they …help them find a good memory care place closeby … and have professionals look after her and visit often.
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Your grandma needs a geriatric Psychiatrist.

If there is a teaching hospital near where grandma lives, that is the place to contact.
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There’s illogical thinking going on. What happened previously to another person, causing your mom to be traumatized, really has no bearing on what’s going on with grandma now. Those are two different situations. It would be sad not to place grandma in a place where she can get 24/7 help from professionals based on what transpired before. There’s no “this happened, so that will follow.” It's not a valid assumption.

I’m sorry your family is going through this awful experience.
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The Dr. Grandmom should be seeing is Neurologist. He will determine what Dementia she has amd what Medicines she can take. Sounds to me an anxiety med may help her. And I agree, she is in Mid stages. You may want to get her to her PCP to do a urine test. She may have an infection and that will cause her to be worse mentally.
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Naomij,
Thanks for the update. I need to be blunt with you after this added information, and I hope it isn't too brutal.
You are 28. You need not to be the one writing us here, but worse, you need not to be the one to try to intercede and to make things OK for your Mom and ALL your other family members doing this care.

You are young. Now is the time for your OWN life.

The sad truth is that your parents, your OTHER Aunt, and the "caregiver" aunt--the three children of this couple--need to get together and figure this out among themselves. These three siblings are the children of these elders. They need to make ANY and ALL decisions now about whether or not they can give care to their parents, or whether their parents need placement in facility.
They need to do internet research.
They need to see doctors.
They need to get diagnostic work.
And they need to stop calling you desperate and needy.

IF you continue to intercede, doing these things will enable their helplessness and create a very unhealthy dependency.

I would suggest you see a counselor, perhaps a licensed social worker since that person may also be able to give you guidance for phone numbers to give your family. You need guidance in knowing you have a right to your own life, you aren't the fixit for your parents, aunts and grandparents. That is imho so very unfair. I think you need help in setting healthy boundaries because if you don't this will get very much worse.

I am so sorry and this may seem unfeeling, Once your parents make their decisions and are able to make their own plans with other family members you could be more free to provide respite, help with grocery shopping, whatever. But you are being drawn now into a net when you are at the prime time to be living your own life. You must not allow this to happen to you.

Encourage your parents to look into placement. They should see an attorney to learn about how to do POA, assets gathering and management, and touring of facilities. And all of that after speaking with your ill aunt and getting what information they can, and then getting on to MD for diagnosis and prognosis and guidance.
This isn't your job to do. It could well ruin your life.
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naomij Jun 2023
Thank you for this.
it’s not unfeeling. It’s helpful. Definitely hear what you are saying.
I am 28. And pregnant. My grandmother is very important to me. She was going to be at my husband and Is wedding 2 years ago when things were starting to go sideways and they decided for her not to come. Since then she’s forgotten who I am.


I talked to my mother last night.
my father and my uncle were meeting up today to discuss plans. Hoping for good news from them.
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Thank you - I am 28. 
my grandparents have been together over 50 years in the past 2ish years my grandmother has had a rapid decline in her memory and has now turned into aggressive spouts. She was living with my aunt who now has terminal cancer and she could not take care of both grandparents alone. So my parents and my other aunt have taken turns having both grandparents stay with them. My grandfather is in decent health, still drives, travels with grandmother no matter where she goes. She’s finally started to forget him at times. It’s good days and bad days. I found this site by trying to grasp as straws for my mother who has called me over and over having the most awful and pitiful days this week. This is my dads mother and my mom is staying home with her during the day now until dad gets home and granddaddy is there too. 

I’ve asked my mother about assisted living. Her father passed not long ago and he was out in a care facility in Ohio. It was handled horribly and he had a horrible expierence there until the end. 
my mother is traumatized and hoping there are specialized doctors with the compassion needed to handle these sort of things. But we have yet to have that expierence. My mother doesn’t not have the energy or the time or know how to try and find websites to help or gain any understanding other than what she’s doing right now with my grandmother which is a full time job. 

I am grasping at straws for my own understanding and research to find a facility of a specialized doctor I can send info to her. My dad is one of 5 children so there’s lots of adults involved in this. yes I am one of many of my grandparents grandchildren. I cannot stand seeing the pain my parents are enduring. I am just looking for others who have dealt with similar Situations and have insight for the right direction to point them in.


I am trying to find those “good facilities” and do some leg work for my mother- her day to day right now gives no rest for researching or even picking up the phone to call people - she needs help.
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southernwave Jun 2023
I’m not sure what you want from this compassionate doctor. Would you explain what you hope to find so that we might be able to direct you to help? Thanks
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It’s not your job to fix your parents choices. Just a reminder.

Did the grandfather on your mother’s side have dementia?

This is dementia and it’s only going to get a lot worse. Her brain is broken and it’s dying.

Her doctor can try medicines to ease her anxiety when she is sundowning, but it will remain to be seen if that works.
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naomij Jun 2023
Thank you - I agree and understand
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Naomij, You say you are one of 20 grandchildren of this grandmother now descending into dementia.

There is much we don't know here.
First of all, how old are you?
How did you find our site?
How is it that you, and not your parents who are caring for grandmother, are writing us?

Who does your grandmother live with?
How many other household members are there?
Has your grandmother been to her MD for a diagnosis, and a referral to a neuro-psyc for a diagnosis? What type of dementia does she have?

Does any member of the family current serve as POA for your grandmother, who cannot now be competent in her own care or decisions?

Has the family discussed all that is happening together, as a family? And are there plans for possible placement of your grandmother for her safety and the safety of others?
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naomij Jun 2023
I am 28.
my grandparents have been together over 50 years in the past 2ish years my grandmother has had a rapid decline in her memory and has now turned into aggressive spouts. She was living with my aunt who now has terminal cancer and she could not take care of both grandparents alone. So my parents and my other aunt have taken turns having both grandparents stay with them. My grandfather is in decent health, still drives, travels with grandmother no matter where she goes. She’s finally started to forget him at times. It’s good days and bad day. I found this site by trying to grasp as straws for my mother who has called me over and over having the most awful and pitiful days this week. This is my dads mother and my mom is staying home with her during the day now until dad gets home and granddaddy is there too.

I’ve asked my mother about assisted living. Her father passed not long ago and he was out in a care facility in Ohio. It was handled horribly and he had a horrible expierence there until the end.
my mother is traumatized and hoping there are specialized doctors with the compassion needed to handle these sort of things. But we have yet to have that expierence. My mother doesn’t not have the energy or the time or know how to try and find websites to help or gain any understanding other than what she’s doing right now with my grandmother which is a full time job.

I am grasping at straws for my own understanding and research to find a facility of a specialized doctor I can send info to her. My dad is one of 5 children so there’s lots of adults involved in this. yes I am one of many of my grandparents grandchildren. I cannot stand seeing the pain my parents at enduring. I am just looking for others who have dealt with similar Situations and have insight for the right direction to point them in.
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Each case is different, because something does not go right with one patient doesn't mean it will for another. These cases are very complex, there are many good homes available to care for your grandmother.

Your grandmother is not in the early dementia stage, she is mid range and needs to be in MC.

Doctors can give her meds to calm her down however that will do nothing to stop the progression of dementia.

Time to make some difficult decisions, your mother and others cannot handle what is going on.

Dementia has tenacles that reach far and wide and will negatively affect all that they come into contact with.
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