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My mom has apparently had early dementia signs for several years now that no one caught. Especially not me. I thought she was just being difficult because she had to move closer to me for other reasons. We have a great relationship but now I know there is dementia involved. Then she had a minor stroke. Doctors say it has exaggerated the dementia.


What I have such a hard time dealing with is the fact that she is still 'here' enough to know she is 'not right,' but neither of us can do anything about it. How frustrating must it be to be her? And know you can't do so many things you used to do, like work a telephone or a TV remote?


She's calling on me constantly for such little things that she feels so bad about and I can't make it right. I mean, I can change the TV channels and things but...


Watching this is sooo hard!! And yes, I have some 'issues' with the fact that she now takes so much of my time from my (once upon a time) life. I can't even think about going out of town or have a full 24 hours to myself. I don't want to be resentful... How do you watch a loved one slowly slip away?

Start investigating facility care for her. She’d have a 24/7 team to look after her; friends, activities, meals, snacks, transportation. The situation you describe isn’t sustainable, and you’re already feeling the strain.

Imagine what your life will be like when she is incontinent, can no longer walk or feed herself, cannot speak understandably, and thinks you’re stealing from her. Better to start making a plan now rather than waiting.
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LinakaLou May 27, 2025
How do you pay for this?
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This certainly happened with my brother who was in a car accident, lay in the arms of a neighbor saying "I KNEW something was wrong" and indeed it was. He had probable early Lewy's Dementia diagnosed by his symptoms. He and I discussed it and planned and worked together to make him safe. He appointed me his POA and Trustee of Trust, we sold his last small home and he chose an ALF. It took us a year. I lived at one end of the state and he at the other. There was no question of my being there physically for him and his remaining home, and in truth that was A GOOD THING.

You and your mom can now discuss as my brother and I did, the past, the present and the future, and get her situated and safe. What you must NOT do is take this onto yourself. This is a downward trajectory you cannot manage and to try to do so is a mistake, and it's a greater mistake to let your mother think that you can.

You have a time in which you can work together now. First step is off to the attorney to make certain wills, POA is all done. Take over the bill paying for her. Look on this as a good thing; you have time, can talk and be honest with one another. I am VERY THANKFUL my brother and I were forwarned and went right to work to get him situated safely.
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My heart goes out to you.
I've worked with people in the beginning stages who know that have dementia. It is a very cruel disease / condition.

You must learn to set limits / boundaries with your time and what you will do.
You may need to hire caregivers.
No one can run on empty.
You need to renew yourself for 'the next day'

If she is living alone, she should not be. She is unable to care for herself.
You need to get MD documentation -
Are you handling legal matters? You have to take over now.

You do not tell her not to call; you see if you can put a block on your phone - for specific times of day or how many calls (I don't know what's possible).
- You may need to turn your phone off. "Try" telling her to call you 'only' 8am-3pm or set some structure. She likely won't be able to abide / remember, however you must start settling boundaries.

If you do not set boundaries with your time and what you do, you will not be able to function 'well' and certainly not care for her as she needs. You need to renew yourself and not allow yourself to burn-out.

You need to know that you DESERVE a life ... and I realize this is a very sensitive and difficult place for you to be with your mother.

My heart aches reading "How do you watch a loved one slowly slip away?'
While I haven't experienced this to the degree you have (and not my own mother), I sense that getting a therapist now will help you process through all this. You are in a GRIEVING situation. And, the worst kind of grieving - in slow motion. Take care of yourself anyway you can.

You can try hiring college students (majors: nursing, geriatrics, psychology, health). Or if you have the funds, hire experienced care providers or through an agency. It may be time to place your mother in a facility.

I highly recommend that you DO NOT allow her to move in with you.
You won't have any boundaries nor a life and you'll fall apart - doing too much, or wanting to do too much. (I am very aware of boundary setting ... and I had a very hard time with my responsibilities - and this was a companion/friend of 18 years. You do what you can ... take breaks ... get volunteers ... call your (or a) church for help ...

I'd advice that you watch TEEPA SNOW's webinars. I took them for 1-1/2 years or so. Buy her books, watch her You Tubes.

Call a local dementia association for support and see if they have support groups. Get all the support and physical assistance (caregivers) you can.

Get this book:
The 36-Hour Day: A Family Guide to Caring for People Who Have Alzheimer Disease, Other Dementias, and Memory Loss - Johns Hopkins Press Health Book
... After 35 years, still the indispensable guide for countless families and professionals caring for someone with dementia.

Whether a person has Alzheimer disease or another form of dementia, he or she will face a host of problems. The 36-Hour Day will help family members and caregivers address these challenges and simultaneously cope with their own emotions and needs.

Featuring useful takeaway messages and informed by recent research into the causes of and the search for therapies to prevent or cure dementia, this edition includes new info on:

• devices to make life simpler and safer for people who have dementia
• strategies for delaying behavioral and neuropsychiatric symptoms
• changes in Medicare and other health care insurance laws
• palliative care, hospice care, durable power of attorney, and guardianship
• dementia due to traumatic brain injury
• choosing a residential care facility
• support groups for caregivers, friends, and family members

Gena / Touch Matters
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MissesJ May 29, 2025
Just a reminder: having a loved one in a facility is not giving up on them or getting rid of them. You can (almost always) spend as much time as you want with them, while not having the responsibility to bathe, dress, toilet, medicate (and elderly people often need suppositories), cook/feed, etc. You can still do as much of that as you wish, within reason. The staff generally loves having an involved relative with a patient.
You could spend more time relaxing, reminiscing, massaging, enjoying the gardens together.
As far as paying for it, do a search for that on this forum. She will use her own money, not yours. Once her money is almost depleted, she will need to apply for Medicaid. You may wish to hire the services if an elder care attorney.
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I feel for you! Watching your loved one disappear and change into someone you no longer recognize is so hard! You have to allow yourself to mourn, and have some grief for the person who no longer is here.

For her, you can just continue to be her constant, her link to reality, even when it confuses her. And don't bother arguing with her about what is right, as she won't understand. Just try and follow along with her on her journey into the unknown.

If she has the means, find a caregiver companion to spend a few days a week with her, to give you a break. You still have a life to live, and you are not betraying your mother by living our life and taking care of yourself.
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CaringinVA May 27, 2025
Well-said, Caring. And this part: "You still have a life to live, and you are not betraying your mother by living our life and taking care of yourself." Absolutely true. It's both/and as you care for her. You have to keep living your life and being gentle with yourself.
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This part of the journey is very hard, both for you and for her. Every day, just try your hardest and best to be a loving and disciplined daughter and care giver. Start to establish routines like exercise, bathing and grooming habits and timeliness of meals. As her dementia progresses, this might be the only activities that you will be able to do with her and she will specifically recognize you because of them.

At this stage, your Mom knows enough not to trust her brain. On the other hand, she doesn't know what she can't remember....and each day is a new day with so much effort in trying to figure out what she knows/doesn't know/whether to ask for help, etc. Very tough times for both you and her....until you and she get to "new normal".

What initially helped my Mom and I, was to enroll her in senior day care. There, she could observe and laugh and chuckle over the behavior of others, the politics between the staff, however, also take naps whoever she wanted, in a safe and supportive environment. Think of it as an 8-10 hour movie.

She would come home and talk about what happened, what activities they did and what they had for lunch and snack. Because she was a fall risk, I paid extra to have an extra attentive staff member be at her side whenever she started getting out of her chair. She loved all the extra attention.

If it was a 3 day holiday, we had a difficult time with her as her normal day meant being in the front row, watching other people.

At night, because she was a fall risk, we hired caregivers from an agency for 9 hours....enough time for me to return home, sleep and get back up the next morning. We had a very tough time keeping caregivers as my Mom was very active at night, getting in and out of bed, then going to the kitchen and eating, etc.

We covered the remotes to only allow her to press the few channels to the television. However, that eventually became too much and she could no longer follow the TV plotlines, then she could not follow the conversation and then she could no longer read the closed caption. She couldn't use the phone as it took too much energy to listen and respond to conversation. If the phone conversation sounded important, she automatically would give the phone to me to deal with. I attribute someone being with her 24 hours a day as the reason why she didn't fall for grandparent, text, or email scams.

She was very much attached to routine...ironically, we could do exercises with her, however, it progressed to not being able to clean her teeth properly, nor could she wash herself. In fact, in the last stages of dementia, she remembered enough to allow me to brush her teeth and for her to do her exercises. It was our special time together.

Your question is: how do you watch a loved one slowly slip away? I had the honor of being with her every day. Every day, I gauged what she could do and what she couldn't do, what she remembered and what she did not. I had a therapist who checked in with me once a week (they found me, not the other way around) who helped me figure out ways to communicate with my Mom, how to control my frustration, how to cherish those times when good things happened.

I luckily had siblings who tolerated my concerns and helped me through many issues. Based on what they heard, they helped plan and prepare for the time when I might not be able to deal with what happened if my Mom stayed at home. I did take "vacations", however, most were cut short because of some "emergency" or another.

So how does one watch someone slowly slip away? With a lot of help and ideas from other people.
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You are not alone. My mother tells me everyday that she's forgetful because she's old. She will not accept the Alzheimer's diagnosis. She forgets she has a mobile phone so she won't call when she needs something. She has forgotten how to use the TV remote, so she watches the same station all day. After she forgot how to put gas in her car, I had to put her in assisted living. It's still hard to speak with her because she's sure there's really nothing wrong other than old age. So she's convinced she'll be going back home soon.
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Hi Brockdo,

Try not to be consumed by your mum's feelings about recognising that she isn't quite right. You have enough of your own sad feelings about the situation without taking on your mum's as well.

I agree with Fawnby that you should look into a more appropriate setting for your mum. And fast. If she can't use basic items, like remote controls, she also can't look after herself.

Your mum will need round the clock care, and that can't be you. You are already finding this situation difficult, so don't take on any more responsibility.

Instead, be your mum's loving daughter and advocate. Believe me, that will give you more than enough hassle and heartache. You don't need to be another burnout victim.

Wishing you and your mum strength and peace in this challenging time.
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LinakaLou May 27, 2025
How does one pay for this???
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They don't call it the long goodbye for nothing.
You need to bring in care so you are not "on" 24/7, and I also recommend respite days when you can get completely away to do your thing without needing to even think about her needs - the earlier you start this the easier it will be for both of you to accept having outsiders as part of the care team. An adult day care might be a good starting point. Many, many people give care in the home, there's no need for a facility at this point but it's up to you to have a clear plan B in place and to know your limits.
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Feel my arms around you holding close patting your back as I whisper in your ear "you got this". You've never done this and hopefully you'll never have to do it again. You do not want the feelings of resentment but more than that no guilty feelings. Put your life on the back burner because it's all about your mom's quality of life in her final chapter. It's your job to help her in every way every day and not make her feel like she is a burden. Patience is top priority. Show no aggravation or aggression. Stop and think what if this was me and treat her accordingly. This will be over quicker than you could ever imagine. Meanwhile a routine helps. Making light of situations help. I would say... Oh well don't worry you'll remember it later it will come to you and tell me when you remember. And if you slip out and recognize you slipped back in tell me that too. Dedicate all your time to enjoying this time with your mom. She earned it.
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MiaMoor May 29, 2025
That's absolute bull.

You have no way of knowing how long this can go on for.

If this was me, I'd say put me in a care home and visit when you can. I'd tell my daughter to live her own life: I've had mine.

What's the point in being a parent if it's not to make sure my family live their lives to the full? It certainly wasn't to provide me with carers in my dotage.
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I have this same situation with my Dad. I moved him to AL near me in October. I also have my mother at my house. She is bedridden and her dementia and hearing loss has progressed enough that she can’t really converse in any meaningful way except on rare occasions of lucidity. But she knows who we are.
I understand how you feel. My Dad knows his memory is bad. He does struggle with the TV and telephone. He asks the same questions repeatedly. I think the only thing you can do is dig deep to find whatever compassion and empathy you have and forgive yourself for times when those human compensators run low. Get some space when you can. Cry or scream or journal or do whatever healthy thing helps. Unfortunately, this is out of our and their control. Time for acceptance.
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