My newly diagnosed (3 months) mom with dementia is well aware of her diagnosis. She used to be an LPN. While she has known she was having memory problems, it wasn't made official until I pushed her to make an appt specificly for it.
Today she tried writing a check while I wasn't home and couldn't do it after 3 attempts. She said she feels "useless". I think this was the realization that she is actually starting to decline. She's frustrated the medicine is not working.
I just reinforced to her that she wasn't useless and things like this will happen, especially since she doesn't do it often. Also let her know the medication will only delay the progress.
Was this the right response? She started crying. What else can I say to her to comfort her? I feel it's so hard on her knowing that she is declining than it would be later when she doesn't realize what's going on. I can be wrong though, I'm not there yet.
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❤️
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 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. ❤️
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
make her feel safe and loved and empathize with her
Having you there is probably the best thing
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
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.
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.
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.
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.
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.
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.
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.
Just learn as much as you can about dementia. And ask any ? you want
Your doing great
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.
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.