How to cope with early stage dementia?

at 78 I would not call it "early onset" but that does not matter what you call it.
When you go to bed at night mute your phone.
If the call comes in at about the same time if you can ask the staff to check in on her around then and reassure her if she is agitated.
If she is afraid at that dawn time of day if you can fix a timer on a light or two so the light will go on so if she wakes she will not be in the dark and may be more aware of her surroundings.
If you can not mute your phone if you can let the call go to voicemail and maybe just hearing your voice telling her that she is ok and that she should leave you a message.

As Grandma suggests, this is not early onset dementia, that occurs at a much earlier age. In your profile you mention both age related decline and Alzheimers dementia. These are 2 distinctly different issues. The behaviors you describe are certainly dementia symptoms. The question is “what's causing it?”. Her symptoms are not normal aging (age related decline). Has she been clinically diagnosed with Alzheimer's by a specialist trained and skilled in dementia diagnoses? Before you can begin to cope with your mom's behavior and your emotions, you must find the cause. Once you know that, you can begin to educate yourself about the disease and gain some insight on what the future holds for both your mom and yourself. If she has already been accurately diagnosed with Alzheimer's, then dig in to as much information about it as you can find. Google “Alzheimer's” to find many resources to help you including both videos and websites. Books are great. The 36 Hour Day, Learning to Speak Alzheimers and Surviving Alzheimers are all excellent books especially written for caregivers. You cope with the disease by learning more about it, including what to do when the stress gets to be too much for you.

She should be checked for a UTI which is extremely common in elderly women and often have no other symptoms than increased confusion and changes in personality and behavior. Antibiotics can clear it up. An unchecked UTI can turn into sepsis, a potentially life-threatening condition. Discounting a UTI is easy and may explain her behavior. If your mom is taking any thyroid medication, overdosing can also produce confusion. My cousin just went through this when she lost a lot of weight and didn't have her meds adjusted accordingly. I wish you all the best as you advocate for your mom.

My mother is 94, lives in Memory Care Assisted Living now, and was diagnosed with progressive dementia in 2016. I know she was experiencing dementia symptoms before then, however, so I'll say it's been 6 years at least she's been going down this road. It's not Alzheimer's, her scans were clean, so it's likely vascular dementia she's dealing with. She's been wanting to "go home" the past several months now, or insisting her apartment doesn't belong to her, and that she's "out of place and doesn't belong" in the residence she's lived in since June 2019. It's worse in the evening, Sundowning, and she gets angry when told she lives there. She doesnt know WHERE she is quite often, just that shes in the wrong place. It's important to note she was put on a new medication recently and medication ALWAYS WORSENS HER DEMENTIA symptoms and state of mind in general. She's at the moderately advanced stage of dementia now, exacerbated by the new medication.

Has your mom been given new meds lately? Does she get sufficient care in AL or is she better suited to Memory Care? Can you speak to her PCP about this new behavior for his input? Get the AL nurse to do a urine culture to rule out UTI, which is always the first course of action?

If your mom has a bad time of day say the wee hours of the morning, ask the doctor if a mild sedative can be prescribed to keep her asleep during that time.

It's always upsetting to hear your mother in such a state of confusion, I feel your pain. I've cried myself when telling my mother her papa is dead and she can't ride the bus to visit him. Or that her sisters and brothers are all deceased so she can't call them to chat, as she wants to do. I explain to her that they're all together and safe, happy, playing cards and will be ready to reunite with her when God says its her time. I don't know what's right or wrong, just that I have to tell her the truth because she's fixated on visiting and calling the dead family members, so there's no other choice.

It's a very hard road you're on here with your mom and dementia. Get some direction from her doctor and get her to a neurologist who has more experience and expertise in the field of dementia and Alzheimer's. Read up at alz.org and the recommendations sjplegacy gave you. That's the best thing you can do.

Wishing you the best of luck.

I'm so sorry to hear about you and your mother. This is probably the worst stage of dementia, when your loved one doesn't understand what's happening, and wishes she was back in a time when she was independent and happier. That's what they mean when they say "home." Visit her as much as you can. If she's still able, take her on short excursions to places she enjoys. Sit with her in a park, or outside on a nice day...Talk to the case manager and staff about her condition. They have a lot of experience and can explain some things to you. When you visit, try not to show your sadness. Be as loving and positive as you can be. Learn to accept her for what she is, day by day. With my mother, I keep having to lower my expectations as her situation declines. Sometimes after a visit I have to go to the bathroom at the facility and cry. Prepare yourself for many emotional ups and downs, and if you need it, seek grief counseling.

I'm so sorry, you are going through this. You situation is almost identical to mine, except I have no sibling to help, because he passed on 15 years ago, due to a herion overdose. I'm also 55 amd POA, and my mom is just 76. She was living with me and my husband from almost 7 years, and we could see cognitive deficits forming when she was 69. She has type 2 diabetes, kidney issues and struggles with obesity, her memory was bad, and she would stay in her room all day. She raised twins on her own, and our father left when we were babies, I've not met him until this day. My mom, is like yours worked a very difficult state job for 37 years to make sure me and brother were taken care of, she was so strong. In 2019 she has a stroke while living with us. She recovered well, but said she wanted to move out in her own place. So, we found a nice apartment at an independent living community amd moved her in. We noticed she was not thriving there after a week. She did not unpack, I set up her meds, and she would skip days even with reminders. She left her purse in the dinning room once and someone stole $100. One day, she fell doing her laundry and broker her humorous bone in her right arm. She had saved up a weeks worth of laundry and did not take her walker, which she still needed after the stroke. I set up aides for her, but she had 3 more falls in 4 days. So, I had to admit her into an assisted living, after only living independently for a month;she was only 74. She has her own room and doing well, but her cognition continues to decline due to CVA dementia due to her earlier stroke. COVID has made it hard for our visits; each visit tears a part of my heart. Seeing her decline at such a young age has been the worse. I feel guilty each day, and miss my strong minded mother everyday. So, I know how you feel. God bless you!

I am sorry to hear of your situation, I am in a very similar position with my parent as well. Memory Care was too disruptive for my Dad as he was not wandering and was very upset by other patients disruptive behaviors that could not be dealt with so not to disturb the remaining patients. When I asked if he was in the right place, we moved him to AL and he much more content. Any time after dinner, Sundowning can begin. I have told the people who work with him at night if he asks for me, to tell him they just spoke to me and I am visiting him tomorrow ad am looking forward to see him. That has cut down dramatically on the phone calls. I have had to work hard to adjust my thinking to the fact that my Fathers life journey is very different than what we all wanted. I visit often and try to keep conversation light and make him laugh a couple of times during our visits. If I have accomplished that, I know he feels better which trickles over to me as well. It’s not the situation anyone wants, the best you can do is keep trying to find approaches that work for you and your Mom. This website is a great place for ideas, wishing you and your Mom the best on your journey.

Hello Stephen. I am learning through my BF Mom 88 yrs. old diagnosed with Dementia this is a fight. You must focus on keeping yourself alert.

Learning ways how to handle this aging disease will help. Such as meditation,prayer. And try to keep up some social enjoyment for yourself. Your Mom may need you; but you need you. We must keep striving to keep a positive perspective on this journey.

Thinking about first maybe excepting “the things you can’t change; but with love and support you will find ways to deal with this. This website is support. I pray that I have given you some words of wisdom.
Have a peaceful day. Email and stay to this website we are helping each other.

I understand a bit of what you’re going through. My mother has early onset she is 74 and there is no one but me. She had a stroke 3 years ago and we couldn’t manage her at home because she wanders and doesn’t know where she is. A good memory care facility is huge in my opinion. Mom doesn’t have a phone in her room but she stopped asking staff to call me. They make sure she is doing real activities not just going through the motions and it helps a lot. She still wanders at night and can get nasty with staff sometimes but they know how to redirect her. Taking some of that burden off me was huge because I felt like I was drowning

So sorry you are going thru this but know that you are not alone. Do you have an actual diagnosis of dementia? I would schedule a full medical workup for your Mom including a visit to a neurologist. This will give you a better idea of what you are dealing with. It may be time for her to get different meds or more specialized care (which unfortunately will cost more) but you won't really know this until you have the medical results and MD recommendations. With luck her current Assisted living will have a memory care section with an available bed. If not, you may have to locate a new living situation for her where she can get care from people who have more training to deal with memory and dementia issues.
Please stay on the forum and keep us updated. Peace and blessings to you on this journey

Good morning,
I feel your pain and you are definitely not alone. Being POA puts you in a very tough spot because others feel like they have no control and because of that think that they do not need to help. If you can have a conversation with your sister to help her understand that you need help, it will be easier on you.
My mom asks to go home everyday and also does not recognize her own house. She whispers " who's house is this"? "How did I get here"? and is full of anxiety. She also does not know who I am anymore. She recognizes me and accepts me but thinks I have my own parents and says she is not my mom.
One thing that helped us really see and understand the decline and care necessary is the RING camera. We installed 2 - one in the kitchen and one in the front porch because my mom will pack her things and leave her home to go to her mother! My mom is 90; her mom passed away a long time ago. Anyway the camera's gave us really good insight of what she is doing and how she was acting. This also helped other family members recognize the seriousness of the situation and that we all need to help.
I cried too at first but I needed to accept it and just keep swimming.. Do your best, keep talking to people and asking questions and getting support. It is one of the hardest things that I have had to deal with. It never gets easier but just try and keep you mom happy as much as possible and you need your sister to understand and help.

Have you spoken with the people in charge of her living situation? She may need more care than that at this stage.You sound like a loving, kind daughter. It isnt easy what you are going thru and no easy way to deal with this. Try to get your own emotional support or counseling to help you through this.I went thru this with my husband and it was the most stress I ever dealt with in 60 years but I had to put my feelings aside and focus on what was best for him and I have no regrets. Miss him every day.

Bless your heart. It's hard. It gets a little easier after you get used to it. I gently and firmly tell my 94 yr old father that he's at my home, and how & why he's there. I tell him that his brain isn't working as well as it used to.

I am so sorry. This isn't really early stage. Your Mom may be nearing time for needing memory care. I saw my brother get diagnosed with probably early Lewy's Dementia. He went into assisted living. He made me trustee of his trust and his POA. He was very afraid of loss of control and what awaited, as was I. About a year and one half from his diagnosis he died from sepsis. In all honesty I was relieved he got what he wanted, and didn't have to face dow the long slow slide and didn't have to witness it.

Please have your mother evaluated by a family doctor to evaluate for dementia and/or other problems. The doctor may make a referral to a neurologist to determine type of dementia and appropriate treatment. In early Parkinson's disease and early Alzheimer's disease, medications can help to "get back" the person you remember.

It may be that your mother can not be at home alone in the evenings. Sundowner's syndrome may be part of the problem. Tiredness and changing light can make everything look different. A consistent routine and more light in the evening usually helps. She may need somebody to help her with evening routine of dinner, night time personal care tasks, and helping her get to bed. If she needs help with evening routine, please consider that she may need help during the day as well.

You might discuss this with the staff and work on some solutions to the sun downing. My mother was in Memory Care and they had a policy off keeping the residents awake and engaged throughout the day so they would be tired and sleep at night. There were 7 different activities everyday, no TVs in rooms, residents were encouraged to stay in the public areas and not sit and sleep in their rooms.

I M SO SORRY. I KNOW WHAT YOU ARE GOING THROUGH. I HAVE A DAUGHTER WHO IS 50 AND WAS DIAGNOSED 3 YEARS AGO WITH DEMENTIA AND I AM CARING FOR HER EVERY DAY. I WOULDN'T HAVE IT ANY OTHER WAY. EACH DAY IS A BLESSING WITH HER. I RETIRED 4 YEARS AGO, HOMESCHOOLED HER DAUGHTER AND THEN I HAVE TURNED MY ATTENTION TO CARING FOR MY DAUGHTER. I DO CRY BUT AT LEAST I WILL NOT REGRET HAVING HER WITH ME. MY BIGGEST CHALLENGE IS WTH HER CHILDREN 19 AND. IT IS VERY HARD FOR THEM. THERE MOM AND DAD WERE DIVORCED SO LIFE HAS BEEN A STRUGGLE.

This is sad and it is even more sad that this all falls on you. When people have this condition, they get worse and worse. It is impacting you emotionally and physically and you cannot allow yourself to have this happen any further. I think the time has come where she must be placed where she is safe and cared for. If you continue to be there as you are, it will destroy YOU and you do NOT deserve that.

So sorry you are going through this. As others have previously said, have her checked for UTI. If that is ruled out have her referred to neurologist who specializes in dementia. If she is calling at the same time every morning have the staff check on her at that time to reassure her.

My father had mixed dementia of Alzheimers and vascular. He died before he got where he didn't know where he was. He didn't necessarily sundown - his delusions could happen at any time. They didn't pop up often. He believed mom had boyfriends and spent their money; he believed he owed phantom people money. I was horrified to think dad thought mom would cheat on him - but at the same time it was kina funny.

It can be hard to do but try and find something humorous each day to make this journey more bearable. Good luck and may God be with your mother, you and your family.

I relate to you. My mother has signs of Sundownder's Syndrome. Because of COVID it is hard to get an appointment. Two more weeks and then I will know for sure the diagnosis. It isn't easy to take care of on your own. I have been doing it 24/7 for almost a month and already am burning out. I am looking for support as well. I have been watching the decline for years with my siblings not helping and having a million excuses not to. I am POA and they are so angry about it. They are more than welcome to cook, clean, shop, pay the bills and wipe the bum. I cry all the time myself so I feel for you and I hope you get the answers you need!

Imho, perhaps you could benefit from reading the book, "The 36 Hour Day."

As several have suggested, myself included, see if you can get a good checkup, including a urine culture and blood work. If those rule out any infections (not just UTI) or imbalances, she may benefit from some medication. Many times docs are reluctant to give anti-anxiety meds, as they can be a fall risk, I can say that mom did well with the minimal dose, just enough to take the "edge" off when she had severe sun-downing due to UTI. She wasn't "doped" up, it worked the first time and every time, kept her calm and relaxed, but clearly awake and helped her get to sleep easier. It was given in the afternoon, to ward off the S-D and I've been there several times in the evening. You'd never know she was taking anything other than there was no S-D. There was no need to wean her off of it when the UTI cleared, it was just stopped.

Despite the fall concerns (one doc refused to give a renewal that was to be used only when needed for that reason), she NEVER fell when taking it. The only tumbles she had in the four years she lived in MC were when she wasn't taking the medication!

If this might help your mother, she'd likely take it before bed, so less likely there'd even be any fall concerns.

I feel for you at such a young age to have to deal with this, but this is the beginning of a long road ahead of issues. I dealt with this with my father. I could tell he had started having some issues (both mom/dad were living and together) when he told me one day that I "gained some weight"......he normally would have never said anything. then other little things, my mother calling at 3 am saying he fell and needed help getting back in bed......then other issues until the last fall landed him in ER then straight to NH because my mother could no longer handle his outbursts, etc. When your mother starts talking about things in the past.......go along with it. She is going to stop remembering the current but will remember the past very well. Do NOT argue with her because you will not win. Go along with whatever she says........it might be hard to change the subject sometimes but you can try. It is hard to see someone that was strong decline (my father was very strong, did everything himself until his health declined) but this disease takes their mind which in turn will take their body. You can seek out counseling if you want, and don't worry about crying when alone. My father passed in May of 2020 due to dementia/heart issues........and I don't think I ever fully grieved as much because more concerned with my mom and now she is in NH due to health issues beyond me taking care of her. I cry at times and talk to my dad about things......its about all we can do..........keep putting one foot in front of the other....cry when you need to.........I wish you luck.......there are plenty of us going thru what you are going thru.