How do I respond when mom realizes she can't perform a task and feels useless?

If it was happening to you, you wouldn't like it. It would be very upsetting.
You didn't cause it, this is the cycle of life. Nobody likes it. Nobody can control it.

All you can do is be supportive.

Something you could do would be to talk to M about the future. If this is coming your way, how can we organise the house better? And the tasks? Should you set up a POA to deal with the need to write checks? Is this the best place for you to live? Where else would be better, and when? What would you like to do now, while you are still so very capable? What’s on your bucket list?

Your M is an intelligent woman, and no wonder she is upset about her diagnosis. You don’t need to cover everything on the list I just wrote, but it’s a good time to start talking. And because she IS intelligent and experienced, talking it through is a tribute to her that may well make her feel better – and more in control.

Sounds like you handled it really well.

Just learn as much as you can about dementia. And ask any ? you want

Your doing great

Of course she started crying.
Is this not worth mourning?
If THIS isn't worth mourning, what in the world would be.
And you are correct. It is very difficult to know what's coming.

You Mom is exactly where my brother was when he was diagnosed with probable early Lewy's dementia by symptoms. He and I scambled to get it together. Sell his last small home after the tough decision that with his living one end of the state and me at the other there was no one to care for him in a town where he needed wheels but could no longer drive. He had to give up all his last things, and for a man always into control he had to give up all control by making me his POA and Trustee. We made him a private account of his own. I sent him monthly accountings of every penny into and out of his accounts/assets. We got him a wonderful ALF.
And we TALKED ABOUT IT ALL THE TIME.
He told me how much he would rather be dead. I sympathized and told him I understood and wanted for him what he wanted, but that wasn't an option so we had to do our best like we always did through life.

It's awful. She knows. I am an RN and I know she knows. Don't deny what she says. She is right. Let her cry. Cry with her. Tell her you agree with her that it is a cruel thing to face down but you will do it together. That you will do your best to care for her. That you love her; that this wasn't your choice or hers and neither of you can change it.

My brother said he would so rather be dead. And when he got sepsis we got him directly into hospice and he let go/I let him go. I felt only relief that he didn't have to go into the worst of the darkness. Meanwhile he told me all about his hallucinations. And he told me that while he didn't like knowing where Lewy's was going to take him, he was glad to know about why his world was changing and why he saw it so differently.

So on you go, hand in hand. Seeing this through the best was you can. There's no denying it. It is right in your two faces. Do your best. Tell her you love her and will be there for her.

You did fine. It’s normal to mourn the losses. Hold her hand and reassure her of your love and support. I wish you both peace

You handled it perfectly.

Consider that she might need an anti-depressant, and ask her doctor about it. She's going through one of the worst realizations that anyone can, and sadness is to be expected.

This would be a good time to put all of her bills on auto-pay at her bank. Then she'll hardly have to deal with checks anymore at all. You can dole out cash as necessary.

If you don't have her POA, make sure you get it. You can then be in charge of her money, which would be a good idea now.

Don’t worry about your mom. What will you tell yourself if you can no longer do something you used to do.
For me I am at that point and while I am in some sort of denial it has given me more motivation to fight harder to prevent the effects of aging.
so pick one thing you/she can’t do and work on it until you can do it.

Give her a tape recorder and tell her to tell her story. I bet she has stuff to tell you that you don't know of her life. It will give her a purpose. You have to be supportive. I would sit down with her to practice writing a check. Having a purpose helps with this disease.

My husband has told me that I need to let him do what he can do as long as he can do it. So, unless he asks for help, I let him struggle through things. He might spend fifteen minutes trying to put on a sweater before he'll ask for help. Or he'll put his shoes on the wrong feet and, unless we are going somewhere, I don't bother to tell him.

So, let mom do what she can. And get her involved in proactively planning the future as someone else mentioned. At least you can talk about it. My husband won't. Communication is a good thing.

Assure her she is not useless. We don't have worth because of what we do, but because of who we are. Remind her of her great worth to you and others as a mother and friend. Commiserate and let her know you have these same fears. Its true that she may not remember your words next week but you can soothe her heart with your love and kindness.

I think you responded exactly right in this situation. You told your mother the truth and did it kindly. Tell her that if she feels useless crying about it will only make it worse for her and everyone around her and you know she doesn't want that.

Tell her that she was very useful and worked very hard in her life. That she helped a lot of people as a nurse and now it's time for her to rest and let people help her. She is owed that and I hope you tell her this.

In the meantime give her small tasks she can 'help' you with. Like folding laundry, drying the dishes, or sweeping the floor. If you have a pet let her feed it and put its water every day. This will help her feel useful.

Hi Nycoder,

In my view, the first thing you did was great, reassuring your mom that she is not useless. The second part, explain that the meds do not do wonders and just delay the progress.

The best that you can do in this stage is to reassure the patient that you care, and will do all that is possible to make life easy for them. When something bothers them, try to redirect by asking a question or engaging in an activity that you both enjoy.

The first stage of dementia, in my view, is the hardest for the patient because they know that something is wrong, and they are losing their grip on life slowly.

Here is a short excerpt from my book "Dementia Care Companion" on the patient-caregiver relation during the early stage of dementia:

The Changing Caregiver Role
Imagine how frightening it is not to be able to remember the names of people you have known for years, not to be able to participate in conversations among your loved ones, not to know why you went to the store or how to get home. Imagine the loneliness of not being able to follow your favorite TV shows with your family, or laugh and cry with them. Imagine being in the dark as to what they’re laughing about or why they are upset.
The role of the caregiver evolves during the course of dementia progression. During the early stage, the patient needs love and care, and a family that shows a great deal of understanding and empathy. During the middle stage, the patient’s behavioral changes demand a great deal of patience and flexibility from those around them. And during the late stage, the patient’s lack of balance, recurring infections, and swallowing problems require great vigilance on the part of their caregiver.
The patient’s needs change over time, and the caregiver’s role has to adapt accordingly. With advancing dementia, the demands of caregiving grow progressively more complex and may require the support of trained professionals.

The Hardest Stage of Dementia
From the perspective of the caregiver, all three stages of dementia are difficult, each presenting its own set of challenges. From the perspective of the patient, however, the hardest period is the first stage.

It makes the hair stand up on the back of my neck when I think about the early years of my grandfather’s illness. No one in the family understood what he was going through. My grandmother kept scolding him to get a grip on his life. Their children joined in on the chorus, telling him to stop being lazy and grumpy all the time. But, what haunts me the most is that he knew he was becoming a burden, and yet, no one seemed to have noticed it when he needed compassion and love the most.

If dementia is a frightening prospect for the family, imagine how it must feel to the patient. Forgetting the names of familiar people and things, not remembering what to do next, or feeling disoriented in your own home can be a source of unbearable anxiety. When holding on to a thought challenges the limits of your cognitive ability and drains all your energy, it’s hard to feel like you have any control over what is happening in your life.
Sometimes it is impossible for even the closest family members to appreciate the depth of the patient’s suffering. More than at any other time, the patient needs support, empathy, and understanding by those close to them, but family and friends are often in denial. They haven’t yet come to terms with the reality of dementia and the patient’s new behavior, diminishing cognition, and speech difficulties. Some even seem unable to take any constructive action.
Family members, whom the patient had cared for throughout their lives, now contradict and boss them around constantly. They belittle the patient, scold them like a child, accuse them of laziness, complain that they have grown distracted and grumpy, and demand that they go back to being the person they were in the past.

I will post the rest of this article in the second part of my response.

Hi Nycoder,

The second part of my response (thanks for your patience):

Patient Needs During the Early Stage

The early stage of dementia is sometimes referred to as the post-diagnosis stage. During this time, the patient may experience minor impairment in learning or thinking ability. They can still continue to go to work, participate in daily activities, engage in conversations, eat with others, go shopping, and spend time with family. They are often successful at hiding their symptoms from relatives, friends, neighbors, and even their doctors, and may not seem any different to those who do not live with them. This period may take years.
The role of the caregiver in this stage is that of a partner. During this time, you are a friend, a spouse, or a child who supports the patient. You help them in their daily life and, if necessary, help them plan for the future. It is important that your demeanor and speech be calm and reassuring at all times. Expressions of love and affection, unconditional support, empathy, and understanding are essential comforts for a patient who is beset by anxiety and the unknown on all sides. 

I think you did what is only natural, and she did too. It’s got to be a very hard thing for her. All you can do is keep being sympathetic and love her. As it progresses you’ll need a lot of patience.

I think you responded great! Let her cry - give her love and now when it is time to write the checks let her assist YOU. Let her add the columns or get the paperwork out, eventually get the check book out of her hands and start paying the bills online. Then eventually get those items out of sight and get her interested in other things. This is what I did with my daddy. He started giving money away because he lost the sense of what the value was. Example: my very good friend was assisting me with caring for him and he gave her two hundred dollars for a hamburger! She took it from him, because by this time we had decided that arguing with him was not working, and then gave it to me. I had to start paying all bills online and all his bills became paperless. Once he did not see the bills he forgot about them. Let your mom do the things she can - water plants, wash dishes, vacuum, etc. This way she will not feel useless and remember to praise her for the things she can do - no matter how small, we may think, the task is.

This will be a difficult time for both of you. as others have mentioned, try to start working towards needed precautions now rather than when they become a crisis. However, it sounds like you handled everything as well as can be expected. There is no perfect answer but remember to give both yourself and your mother room to grieve and come to grips with this new reality. Unfortunately, your reality is going to be doing a lot of shifting. Just remember to approach everything with as much compassion and care for both of you.

I will give one piece of advice for later on. As my mother‘s dementia progressed, she would become extremely frustrated and not know why. I realized that she would see me doing things and felt like she was “useless.” I started to look at every chore I was doing would set aside something that was repetitive and only had a few steps. I would then ask mom to do those things to help me out. For example, towards the end of her life, I wouldn’t fold the clean towels. When she would want to help, I would say something like “thank goodness, can you fold these?” and I would bring out the laundry basket so she could take care of that for me. When I could find a chore for mom to do, I was almost always rewarded with a smile. That is a memory, I now cherish.

Good luck with everything and know that you are not alone.

Paula

I didn’t read all the comments, but the most important thing might be for you to make her feel secure since she realizes that she will experience loss in the present and in the future. There are doctors on YouTube that treat dementia and have had success with a natural approach and there are patients that have recovered and are giving testimonials of it. Fish oil omega-3 is very important for brain function. You could add that to her medication. If you get the right kind it certainly can’t hurt.(like Nordic naturals.) I am a caregiver for someone with dementia and since I started giving the fish oil, there is an improvement, although it is slight. She has stayed constant in her level of cognitive ability for 2 years although she does have sundowning, which is very difficult.
make her feel safe and loved and empathize with her
Having you there is probably the best thing

Create 'win-win' tasks.
Even folding laundry.
Anything that she can actually do.
Try getting her an automated cat or dog to pet.
They are very adorable and perhaps this will re-focus her attention.

Well, I would say that 'telling her' she isn't useless won't do anything.
Although that would be a usual reaction to want to say.
It is important to reflect what she says "reflective listening." I hear you saying xx ... Or I hear that you feel xxx" and let her talk about her feelings more.

I would re-focus her attention to something she enjoys.
Arranging flowers (with her). Stuffing envelopes for a non-profit?

Perhaps show her a photo family album and how she was as a loving mother ?
It may or may not help.

What won't help is saying "we are all going through this" (getting older, losing our memory). We aren't there so lots depends on the moment.

Try Play Dough or something like that if it seems like it might work ... or a puzzle.

Telling her that she can HELP YOU with xxx by doing xxx with support her to peel useful. Can she peel a potato or carrots? Anything like this will help her feel better about herself.

You are a lovely daughter.

Gena / Touch Matters

My mom realized that she was declining and needed something to do. I put my printer/scanner in front of her and had her scan the pictures. I also gave her yarn to roll into balls. I complemented her on how nice she did and she said “honey, this is all I can do” and started crying. My mom does not cry. I sat in front of her, held both of her hands and said. “Mom, you have me, you are safe, you can trust me I will be your memory and God loves you. I also love God and know my responsibilities to honor you.” I asked mom if we could pray and she said yes. I asked if she wanted to start and I would finish and she said yes. It was a wonderful prayer of fear, faith, hope and thankfulness. That was 3 years ago. She went to AL because she wanted to be as independent as possible but it was apparent that the place was good and not consistent due to staffing and lack of excellent staff. I got her a caregiver whom I introduced as my friend and she visited without me. When mom was getting lost and afraid to leave her room, I got her in a MC and took the caregivers with me. 2 people. One works 5 days lunch and dinner and the other works 2 days lunch and dinner. I made sure the place allowed cameras so I know mom’s routines and I can call her when she is in and awake. She cannot operate a phone anymore so the old iphone I have as a setting to auto answer and only allow calls from her contacts. She has become calmer as her mind has aged and she trusts and lives in a bubble of bliss. She has a sense of humor when she listens to Golden Girls on TV and knows who I am. She sleeps a lot but has continuity of care which I am grateful for. This is long but it is important not to answer the question with anything other than your 100 percent love and support to alleviate fears. I have told mom it is a honor to have her as my mom and to care for her AND That she is so well liked by the staff and how I love hearing that. The only time she is not so good is when she gets a UTI but we are right on it! Pee on those little sticks and the Doc gets right on it. No one should expect the MC or AL to be a wonderful social place when you have a loved one who needs cueing and patience. They just don’t staff the place well enough and the best ones are few and far between. I tell mom it is wonderful to be able to love on her and thank her for letting me. I also tell her I am the queen of comfort while I arrange her pillows, put pillows under her elbows and cover her with a blanket and a warm compress on her eyes. She just smiles. I am grateful she still knows me and she responds to the caregivers as people she can trust. You will be with her through this and that is what she needs to hear over and over.

Have her do simple taks Like unload the dishwasher , water Plants , Fold Laundry , take groceries out of the car . Start a Garden with her . I would buy My Dad a big Bag of Pistachio Nuts and that kept him Busy for awhile .

Nycoder: You handled it well.

I think it’s essential to live in the present. My mom and I laugh a lot. I think if we feel sad about what they can’t do anymore they will too. I act like she’s the same old Mom. If she can’t do something I’m completely nonchalant about it. If she forgets something and is frustrated about it I point out it’s not her — it’s just her brain.l — she’s still herself in so many ways.

I point out all the times she notices or remembers things and I don’t. I laugh about the dumb things I do. I tell her *I* need assisted living. We laugh all the time. My take is that every stage of life has its pros and cons. If you look at it from a certain angle not having to write checks or do taxes anymore is freedom! I take my cue from the trees. They don’t grieve losing their leaves. Change is the only constant thing in life. We are dying from the moment we are born. I truly believe we can be at peace with — and love — every stage.

We also sit together often and list all the things that are great in our life. We can all find someone who has it better than we do but millions of people in the world have it worse. ❤️

And walk. As much as she wants to. Exercise is essential. We were walking six miles a day last summer. The mind/ body connection.

Your words seem to have been spot on. It is especially hard in the beginning when the loved one is still aware of all they are losing- We began "fiblets" very early- saying something like, "yes, these things can be really trying when we're flustered. I too destroy numerous checks regularly (wait, that's not a fiblet!) but it will come back to you when you're not trying too hard... " The last part is only partially true- her abilities may wax and wane for a while, but we pretend that our LO is perfectly fine. This seems to be the best for us. Bless you in your journey...

Let's do *that task* together ❤️😀

I LOVE that comment below saying "It's not you - it's just your brain!"

Reminds me of a book I read (The Eye of the Storm). The old lady, (bedridden maybe) is not embarresed needing her body washed, hygiene help etc. Said something like "That's just my body". It stuck with me... we are still US inside, beneath the wrinkes, grey hair, no hair. Still us when our eyesight dims & hearing fades. When our brains lose a few connections too.

I think just be supportive - I would sit Outside with my Dad On the steps and we would pet the dogs that passed by and I had snacks . My dad would go out on the side walk and Pull up the weeds and clean the sidewalk Picking up trash . he would clean His car even though he wasn't driving . Spending time together On Long walks or cooking together too . We Liked to go out to Lunch and sit outside . I Really never mentioned dementia to him either , that was not The focus . Focused more on Physical therapy and long walks together and social activities . Even Just getting an ice cream cone and sitting On a Bench . Go shopping with her at the famers market - Keep it cheerful . Took him to Maine several times and danced to live Music .

When my mom had Dementia, she couldn’t write checks as fast as she used to. She was an accountant, and she told me that she used to write 10 checks in a minute, which was probably true, and it aggravated her that once Alzheimer’s hit, I had to show her where to write the name of the recipient of the check, where to sign her name, etc., which was time-consuming. I told her that I couldn’t play tennis as well as I could when I was younger, and that made her feel better, that everyone’s body will show the effects of time. I phrased it this way, rather than correlating it to the effects of Alzheimer’s. It seemed to work. I wanted to keep her as independent as possible, for as long as possible, so even though I could write the checks for her, I think we both benefitted from her doing it as long as she could. An Alzheimer’s diagnosis is hard for everyone, isn’t it? (Patient and family members alike.) We all just do the best we can.

Allow her to mourn "the loss." Also remind her of all she can do.

Reassure your mother that she is loved and she has an important place in your life and in other people's lives. Encourage her to think about what she would like to happen if she is not able to care for herself at some future time. You need to know what she wants and also be realistic about what help you're capable of providing. Much depends on her finances. It takes courage to face these possibilities. It's time to have a talk with your mother about your taking over her finances. If she agrees, have all bills and statements sent to your address, or better still, go paperless. Stop all bills and statements going to your mother's address. Make sure that your mother's paperwork is in order. She needs to set up Powers of Attorney (POA) for financial and medical matters, a will if she has assets and a living will with her advance medical directives. This is something all adults should do, not just her. If you haven't done it, maybe you can do it together. It has to be done while she is still mentally capable of signing legal documents. She may need an attorney for these legal papers, depending on her assets. Hopefully you will be designated as her POAs. Banks and financial institutions have their own POA forms, and you need to be on file with Medicare and Social Security and other medical insurance plans to be able to speak on her behalf. All the best to you both.

I don’t know if I’m qualified to say this but you could perhaps only focus on giving her positive reinforcement and not hitting her with any hard reality talk- she was a qualified medical professional I gather so she is self aware but the helplessness of not being able to do anything about it is nerve racking!
I took care of my mom who had rheumatoid arthritis and finally got bed ridden and so I brought her home and looked after her for 3 years after my dad passed away due to Covid at its peak. My mom passed away 10 months ago due to complications in colon and ulcer in stomach during her last year and if there’s one thing I think about often is pushing her to do things and understand reality to better cope with it and caught her crying in private. I wish I would’ve not said even that though I was a loving, dedicated and 24 hour on mom’s call kinda daughter.
I think the best thing you can do is to make her remember her best days, talk often about her strengths and how she still inspires you… and this will really help her cope. Meanwhile do share your feelings with close friends who’re mature and care for you and even family members who really empathize and lessen your burden of stress. Hope this helps❤️