Follow
Share

My mom has been losing her memory and reasoning skills for many years - slowly. She has always been a confabulator. She was diagnosed with dementia about a year ago but she insists it’s just chemo-brain (it’s not). My dad died 9 months ago, I moved back in with her because I finished my grad program and I didn’t want her to live alone (and my partner is currently travelling for work so we get to save money, too). She is independent but frequently forgetful and I don’t think it’s reasonable that she ever lives alone again. When I end up doing things for her it’s a fight (but if I don’t she won’t pay the bills). She constantly feeds the dog too much. I feel like I need to take control of her life but also it’s too early to do this. This scares me so much. I feel so angry that I am not appreciated and instead resented. We are both just resenting each other. She is still so normal and I get so angry and frustrated when she forgets or lies, I have trouble being around her. She knows I’m depressed and frequently angry or sad but she doesn’t know why. I can’t tell her it’s her. I don’t know how to fix myself so I am more tolerant, I just feel like I’m getting worse. She’s so frustrating to be around and I feel so guilty because she’s a lovely person.


How do I learn to accept the lies I have to tell her?


People keep saying “get outside help”... no, it’s covid, she’s high risk, and help with WHAT? She doesn’t need anything to do with her health right now.


She talks to herself all day and I am going insane trying to work.


We have conservations that feel meaningful and then the next day it’s like they never happened. I guess I’m just in the throws of coming to terms with her illness but I am SO mad at her and SO ANNOYED. I really try to go along with her reality, but she’s also so together that I feel like I owe her to tell her the truth... like if she says she hasn’t had popcorn in years but I made some last night ITS SO HARD to not say, oh I really liked the popcorn I had last night (I know I need to stop doing this) it’s just that I’m so used to treating her like a normal person and she still has all the privileges of a normal person and it’s so early that I just don’t know where he personality begins and where her dementia does.


It’s difficult to live with your parents in the best of times. It’s difficult when your support network is your mom but you can’t be honest with her because she’s why you need support. It’s also difficult when she’s the only person you speak to everyday because of lockdown and it’s just like I live in her reality even though she’s not with it at all. I feel like I’m wanting the next phase just so this one is over and I am also dreading it and know how horrible that sounds.


What can I do to make our relationship better? What can I do to hide my emotions from her and feel comfortable with the white lies that I need to tell her all the time by ‘going along with her reality’ ? Am I alone I’m feeling the way I do? How can I be less angry?

This question has been closed for answers. Ask a New Question.
Lots of good advice here.
I can only add prayer. I pray for understanding, patience, wisdom... There have been times I have wondered why I was able to deal with a situation, and the only thing I could think of was that my prayers for patience were answered.
My sister-in-law had chemo-brain that became dementia that she eventually died of. It's rough.
Helpful Answer (0)
Report

I know where you are coming from and based on a long time of life experiences in these matters, I can honestly say that not every human, no matter how much they may love someone, is suited to being a caretaker I am who I am and I could never, ever be in a technical job. I'd be fired at once but in other areas I excel. So goes it with caretakers. If you can't put up with this nonsense (I couldn't), then you have two choices - you hire a caretaker to handle her and leave you in peace or you put her into a facility. This is not going to get better or get resolved, only worse. Don't let this affect your life - you still have a life and don't let it get lost. And while she is around, YOU SET THE BOUNDARIES AND ENFORCE THEM. You have no choice - YOU MUST TAKE FULL CONTROL.
Helpful Answer (0)
Report

Imho, breathe and get respite whenever possible.
Helpful Answer (0)
Report

First of all you need to breathe. What I have learned in my 7+ yrs of full time caregiving. It is ok to tell white lies. To agree with her when she hasn’t had popcorn in years. When she mixes up stories and adds things or changes the situations of the stories. If you argue different points, that really don’t mean anything anyway, it just confuses things and gets them very frustrated, which makes things worse. If she has lost all reasoning skills, you are just making things worse on YOU! I keep my mother safe, feed her, and I am there for her verbal abuse(at times). From a person who traveled the world, in her profession, was an EXCELLENT seamstress, baker and making sure all of her family and friends were never in need of anything, to being able to get herself dressed, somewhat, and making a sandwich for lunch, it takes her an hour to do it, she fights with herself all day, everyday. She thinks she can do everything she did 50 yrs ago. When in fact she can not do or complete anything. When she says EVERY NIGHT , that tomorrow she is going to cook, or bake something in the morning, or that she wants to finish her quilts, I just agree with her. You have to pick your battles. What you are feeling is nothing compared to her frustration and confusion. It is VERY hard to live this life. If you are able to get her into assisted living , in hindsight, that would be my advice. If it is not possible, and you are the only caregiver, be prepared to totally give up your life. It is a 24/7/365 job. Do not count on others to help you out. Friends and family WILL VANISH! This sight is a lifesaver. Use it. A lot. As a sounding board. Advice, or just to have a shoulder to cry on.
I wish you luck. AND PATIENCE!!! ❤️
Helpful Answer (1)
Report

Some powerful words and suggestions have already been provided. I can only add that the frustration, at least for me, comes when I feel so helpless because I've lost my "real" Mom and I can't do anything to significantly help her or get her back to her old self. All of her annoying quirks, her anxiety, the repetitive motions and vocalizations - all of it is a constant reminder of this huge loss and it gets to be overwhelming. When my Mom was at your Mom's stage, the frustration on her end came from both the denial of her condition and the progressive loss of independence, and my helping was a constant reminder that it was real and it was happening.

All I can say is that it will get harder, so try to cherish any and all meaningful exchanges you can have now - even if they are fleeting for her. You will need those as time goes on and the disease progresses. Some people progress slowly and some much more quickly. My Mom progressed at an exponential rate in the last two years, and now we're looking at memory care. I wish I had appreciated those early days and faced my fears and grief more then, so I could have been more compassionate with both my mom and myself. You are not alone, and the only way I have found to be less angry is to do your best to fully face what's happening and try your best to authentically grieve for what you are losing. Not an easy thing to do, especially when you are caregiving, but holding your Mom to the standards that she used to be able to meet will only leave you disappointed and angry and leave her feeling resentful and scared.
Helpful Answer (1)
Report

Check out ' Careblazers' on You Tube. The doctor has amazing advice and information on dementia. I am going through the same thing with my mom. Has your mom been diagnosed yet?
You need a support team. I had my mom living with me for about a year and now she is in a memory care unit. I could not do it alone any longer. There's a lot you need to take care of before it gets worse, hopefully while she can make decisions-like about her care and finances, and get it legalized.
Helpful Answer (0)
Report

Im a severe asthmatic and recovering from covid. Mom got dangerously sick from covid and is recovering. My mother has begun to trigger my asthma now that im physically more susceptible. I'm 57, she's 88, and I'm basically homeless right now if I'm not living under her roof. We have virtually always lived together. Don't know where it's going now.
Helpful Answer (0)
Report

Wow Disgustedtoo is point on about a lot of thing you said! When I read what you wrote I cried because that is how I felt last summer. The fact that I could not longer talk to my mom and ask her for advice was heartbreaking !! When I did she tried her best to give advice but it didn’t make any sense. If you could remember that she “can’t remember “ yesterday, last week or 2 minutes ago it will help you be more understanding. My mother constantly over feeds the dog to the point where she holds the dogs head and shoves food in its mouth so the dog tastes it !! This was intolerable to me so my kids got a hat that says “Ginge Ate” and after the dog eats I put the hat on and it’s in her sight this way when she asks me if the dog ate I look at her and point to my hat and she laughs and so do I. At dinner she is always saying I can’t remember the last time I had Italian bread. I used to say .. last night Now when we sit down I say omg we haven’t had Italian bread in so long would you like a piece. It just becomes predictable I find humor gets me through it and I don’t resent spending time with her anymore. I will say you need help. She will resist!! Say the help is for you not her and tell her you are paying for it. That worked for me! Also things will get worse. I was accused every night of stealing her money because she would get paranoid and hid it in her room then forget where she hid it. I noticed she talked to herself out loud saying how she couldn’t believe her own daughter would steal money from her and she didn’t understand why I just didn’t ask for it she would have given it to me. In her mind she believed it and when we searched her room and found it she cried and asked how did that get there. You can not do this alone things will get worse. Mom started getting incontinent and it’s a mess. She cleans it best should could but I need to always clean after her. It’s mentally and now physically draining on me. I looked online for aids and it lead me to this forum. When I read that people were going through the same thing I was it was a relief. There was many a night I cried myself to sleep. There is never a thank you so don’t expect it and it won’t hurt as much. When it becomes overwhelming and you can’t escape it and you argue or even fight with her just remember .., 10 min later she will forget the fight ever happened so let go of your guilt and move on as tho nothing happened. My mom now has 24/7 care and I feel the burden of daily care lifted off my back and I enjoy her more there is no resentment. Also music is a great thing especially for distracting her try that when you are trying to work it always puts my mom in a good mood! Good luck !
Helpful Answer (2)
Report

You need to move out - if she doesn't need help then she doesn't need you. And neither of you need arguments and resentment building between you at what is only the start of a journey that is going to get more and more difficult. Some people can cope, others can't its just a fact, we are all different, no need to feel good or bad about it. Move out and keep in touch, phone, facetime, pop in, offer to take on things like paying bills if it would help. But don't take on now something that you already cannot deal with and will only become more and more of a burden. Better you stay at a distance and retain a good loving relationship than you stay up close and both become miserable and your health suffers as well. You cannot help at all if you are not in a good place mentally because of the situation, so look after your needs, and help to sort out hers as they develop maintaining a loving relationship.
Helpful Answer (1)
Report

The stage she is in is very difficult for both of you. I had to adjust as well with my mom. One thing to remember first, she has a brain disease that is causing everything you are frustrated with. She cannot help it and she will never be the same. It will only get harder. She no longer has the empathy or understanding to care about your frustrations. Try to Meet her where she is at emotionally please. Choose your battles. It doesn't matter if she exaggerates or tells a story. To her it is real, she isn't purposely lying and it's so sad when I hear my mom do this as well. I've learned to just go along and converse with my mom about the things in her reality to protect her dignity and make her feel like she still has her mind, because often times she is really scared about what is happening to her mind. You will continue to experience frustration and depression alot as her disease progresses. Try to remember what she is going through however. For Example, I had two siblings pass away a few yrs ago. My mom totally forgets they existed at most times, or when she remembers them she thinks they are still alive. Now, when she asks about them, I no longer remind her that they died. Caring for someone with this disease is probably the hardest thing you will face...you are not alone. Good luck to you.
Helpful Answer (4)
Report

I'm sorry to here what what you and mom are going through. first, of all we cannot control what happens to us in life. for some people they lose memory or what have you. second, your not alone. I know its hard and of course the Cov is not helping. you have to work together. Work as a team, Not against one another. third, don't be concerned about her over feeding the dog. like anyone if there full you cannot eat anymore. lol. unfortunately, you should understand better than her because you do not have Dementia she does. Please don't feel resentment towards her she cannot help it. just like you. You don't know how your life will turn out. I know your feeling alone. you stated your mate is traveling. You both could get help (mental) with a telehealth doctor for you and mom. Both of you are stressed and need to see more people or just go out get some fresh air. Instead of finding fault give each other lots of hugs and for heaven sakes please pick up the Holy Bible read it daily and ask God to guide and protect you and mom. Remember mom use to get upset and annoyed with you when you were younger so now its your turn to assist her. It's ok you both will be fine. God Bless You Both!
Helpful Answer (2)
Report

You're very young to be in this position. It takes a long time to learn about dementia, and like all of us, you will get better at it as you learn.   Disgustedtoo, and others, have given you valuable advice and insight that is in the right spirit. The most helpful piece of information I've encountered is Teepa Snow's video on brain changes, linked here: 
https://www.google.com/search?q=teepa+snow+brain+changes&oq=teepa+snow+brain+changes&aqs=chrome..69i57.11074j0j4&client=ms-android-lge&sourceid=chrome-mobile&ie=UTF-8#fpstate=ive&vld=cid:ddadbed5,vid:mkRvK26bkTQ,st:0

Please watch. It's 13 minutes, and will forever help you understand the changes you're seeing in your mum.  
Your emotions sound like frustration, both through a lack of understanding, and the impossibility of solving the situation. Remember what you will read on this forum time and again; her brain is broken, and can't be fixed. You will learn strategies on this forum to help with specific situations. Perfection isn't possible anymore; let all the standards relax. 

Two points I will stress: if your mum's judgement and information processing is impaired, she shouldn't be driving. Period. 
And a helpful tip - - speak more simply and more slowly. Don't construct a sentence listing three "to do's". She can't remember the list even as you're saying it, and her distress as she realizes this will muddy things even more. Her brain is slower - give it a couple of moments to take the information in.

You can still respect your mother. If she wasn't a person who lied in the past, she's not lying now. She will be confabulating, making up a narrative that make some sense for her, given the limited pieces of information her brain can hold onto. Don't argue with her and try to prove she's wrong - -it's disrespectful and doesn't help either of you. I'm sure that as your mother is a lovely person, the sense of conflict with her hurts you. You don't need to prove she's wrong, or convince her she has dementia. Call it whatever she wants to. You know what it is already, so let the struggle go. 

Your role with your mother is changing - it's difficult to stop expecting her to be strong, capable, right, and your strongest supporter. She just can't anymore. And that is a loss.  So now, you are becoming the capable, reliable daughter of a good woman.

My mum is a lovely person too, and though we went through a difficult period in her decline, it's easier now, and her character continues to shine. I'm proud of her.
Helpful Answer (5)
Report

Get yourself a copy of the "36 Hour Day" book. It will help explain your mother's situation and the things that are going on that may not be visible. Lots of good tips. You will develop tolerance with understanding. I'm so grateful to the person who recognized what was happening and told me about it when we first started this journey.
Helpful Answer (0)
Report

I’m sorry you are dealing with this. My MIL used to be SO frustrated with my FIL all the time. She knew he had dementia but I think sometimes she felt like he was doing things on purpose, but mostly I think she was just exhausted.

There is a lot of good advice on here. I would add one thing I do when I feel the frustration rising up. I remind myself that I am dealing with someone with the mindset of a toddler much of the time. It sounds condescending, I know, but it puts me in a different mindset. Just like a small child can’t help some of the things they do or say, neither can he.

My FIL scored 5/30 on his most recent dementia screening. That’s pretty severe, but no one outside our family would know it in passing. He functions pretty well, and he is very healthy physically. He can interact and exchange pleasantries and even tell great stories from 50 years ago, but he can’t tell you what he ate for lunch or where his bedroom is or his daughter’s name. His short-term memory is about 5 minutes at the most.
Helpful Answer (4)
Report

Do you have any examples apart from the popcorn incident of the lies and confabulations?

I take it that you are thirty, and your mother is how old?

Diagnosed with stage 1 dementia and cognitive decline... by whom? In what context? What sort of dementia?

And she says it's just chemo brain... Er. Why was your mother having chemotherapy, and when did she finish this treatment?

I'm very sorry for your loss of your father. What happened, if you don't mind my asking?

Look. Stage 1 is, well, negligible, really. It is also quite difficult to distinguish its impact on a person's functioning from that which might be caused by stress, fatigue, and other factors related to ill health. And living with a person who is herself stressed is quite stressful. How long were you planning to stay with your mother?
Helpful Answer (1)
Report

Sorry about the loss of your dad. That certainly doesn't help make any of this easier.

Never used the "D" word or any similar ones with my mother. She wouldn't accept it and her idea of what it meant was wrong too. I knew nothing about dementia when this cropped up. I had to learn QUICK! I used various GOOD websites to glean whatever I could. Not everything is useful, but getting info from many sites can fill in some of the gaps.

In reply to another comment, I suggested a good checkup with her doc, including blood work and urine culture - imbalances and UTIs can cause dementia-like symptoms and often are treatable.

One thing to keep in mind - every person's journey with dementia will be unique to that person. Sure, there are a lot of similarities and symptoms, but the brain isn't a simple light switch that is on or off. So many bits of wiring can get messed up, different for each person. Different types of dementia also affect different parts of the brain at different times. So, as you learn, you will see some aspects, but not others. Stages are not always helpful. Someone can exhibit behaviors and/or symptoms from multiple stages. The key is to understand what you are seeing and then knowing how to "deal" with it.

"What can I do to make our relationship better?" Hard as it is, patience. Understand she can't help doing or saying the things she does. Try not to let the little stuff get under your skin. She isn't really lying, she believes it.

"What can I do to hide my emotions from her..." What emotions, anger? Frustration? Usually you know these are building up, excuse yourself and move to another room, step outside, someplace away from her, take a deep breath and try to shake it off.
"... and feel comfortable with the white lies that I need to tell her all the time by ‘going along with her reality’ ?" This was a tough one for me. We're raised to "tell the truth", but sometimes it is better to go along with her "truth" or "reality." If the truth will cause pain (explaining a LO or friend has died) or negates what she believes, skip it. You don't have to make up anything, go along with whatever she says, so long as it doesn't cause any danger. It doesn't have to always be a lie either. When my mother would ask if I'd seen X or Y person, I could say "Not recently", which covers even those who have passed away. Not a lie, but the "truth", telling her they are dead, would have to happen over and over and WOULD hurt her!

"Am I alone I’m feeling the way I do?" Certainly not. Thousands are walking miles upon miles in shoes just like yours!

"How can I be less angry?" Depends on what the source of the anger is. Angry mom has this awful affliction? Anger won't make it go away, it'll only eat away at you and cause stress and tension in dealing with her. Anger that you are trapped in this "nightmare"? There are options, if she can afford them (in-home help, facilities. If she qualifies, Medicaid can provide some help. If she's home bound, Medicare also offers very limited help. See if she can get these and they can give you a break.)

Try to find the humor in some things. Laughter is good medicine, for both of you. Go along with what mom thinks/does. Don't argue. Don't correct. Don't contradict. It is futile to try and will only lead to more frustration and anger, perhaps for both of you. Agree with what she's said and then try to change her focus onto something else, something more pleasant for you both. Redirect her onto some task. Find "busy" work that might occupy some of her time.

ALL of the "techniques" you can learn along the way will help, even if she eventually moves to a facility. You will still need these tools in your belt!

Response to some of your specific concerns will be in a response to this post:
Helpful Answer (5)
Report
disgustedtoo Mar 2021
"She is independent but frequently forgetful and I don’t think it’s reasonable that she ever lives alone again."
She can probably be alone for short periods of time, but living with her is probably a good idea, for now, so she isn't alone.

"When I end up doing things for her it’s a fight (but if I don’t she won’t pay the bills)."
Suggestion for the bills: Assumption is that you have POA and can legally manage her finances (SS is a different story, TBD.) If so, switch to e-billing, if possible, OR get a PO Box and call all the billers and have them change the BILLING address to the PO Box. Service address remains the same. This CAN be done without POA, but unless you are joint on her primary bank account, you'll need POA. Use the bill-payer system to pay her bills. SS is in a class by itself - legally you need to sign up as Rep Payee to manage her SS funds, even if they are electronic deposits already. The key is getting ALL checks and bills out of her sight, then she *might* forget it sooner. Once I took over all mom's finances AND cleared out ALL paperwork, including old statements, she never brought it up again. Out of sight, out of mind...

"She constantly feeds the dog too much."
Can you lock the food up so only you can access? When it's time to feed the dog, give her what she needs to feed it, but let HER do it. Maybe half now, half later.

"I feel like I need to take control of her life but also it’s too early to do this."

It's most likely too early. Please try to let her do things she can manage, even if she doesn't do it right. Means a little extra work to clean up after her, but it gives her something to do and some sense of being needed and useful. Fold laundry, set the table for meals. Prepare what she can for meals. Help her maintain as much autonomy as possible.

"I feel so angry that I am not appreciated and instead resented."

This you need to work on. You likely won't ever *really* get that sense of appreciation, so why expect it? KNOW that you're doing your best for her. If you encourage her participation (even if it makes more work for you, do it!), and lose the expectation of appreciation, it should help get rid of some resentment.

"We are both just resenting each other."
See last paragraph. If you give her tasks, a sense of purpose and stop trying to do it all for her, it should reduce resentment for both of you!

"She is still so normal and I get so angry and frustrated when she forgets or lies..."

But, she isn't normal. She DOES forget. She ISN'T lying, not in the true sense. Nod and smile, move along. There's no point in getting flustered over something neither you nor she can control.

"...I feel so guilty because she’s a lovely person."
Remember this! She's still a lovely person, she just has a medical condition that interferes with that. Try to focus on the good still there and overlook the rest.

"How do I learn to accept the lies I have to tell her?"
Don't think of them as lies - they are said to protect or not hurt her. Fudging the truth isn't the same as lies. True lies are told to protect oneself or cover up wrongs done.

"People keep saying “get outside help”... no, it’s covid, she’s high risk, and help with WHAT? She doesn’t need anything to do with her health right now."
It could be just a companion for her, so you can take a breather. They could chat with her, have tea, take a walk/walk the dog, anything to keep her occupied so you can work or have some ME time. See if you can hire an aide who has been vaccinated. Socialization IS important, for both of you.

"She talks to herself all day and I am going insane trying to work."

Can you wear ear plugs or a head set? Is "work" a job or just tasks around the house? If a job, having a companion for her can help with that. If tasks, just let her prattle on, half listening in case a response is needed, otherwise a few Uh-Huhs, Reallys, "You don't say" can be used so she thinks you're listening.

to be continued...
(2)
Report
See 1 more reply
Get your Mom's health checked out, you can still do this safely. Ruling out any physical reason for her problems is the first step. Then have a discussion with her and her doctor about your worries and concerns. It's the doctor's job to tell her about dementia and it’s impact. She may be more willing to accept facts from a medical professional.

Dementia is a fact of aging and the more openly you can discuss this the better. My mother frequently worried about why she couldn’t remember things and I would tell her "you are getting old (93) and forgetting things is just part of the deal. Denial and hiding the facts doesn’t help.

Next is realizing that you cannot change things, your mother’s mental state will continue to decline. You should educate yourself on the different aspects of aging and the kinds of help your mom will need.

Good luck and don’t try to do it all yourself.
Helpful Answer (1)
Report
disgustedtoo Mar 2021
Forgetfulness can be a part of aging, but dementia is not. Yes, chances increase with age, but there are many MANY people 80s, 90, even in their 100s who do not have dementia.

Agreed that a good checkup is in order. Esp blood work and urine culture test (imbalances and/or UTIs can cause dementia-like symptoms and might be treatable!) A better test was done by the nurse sent from the aide agency we tried to use to let mom stay in her place longer. She came to mom's condo, with us there, and did the test. It was less stressful/threatening than at a doctor office and more thorough.

Agreed also to learn more about dementia and maybe understand some changes and be able to anticipate other changes. Some of the advice given in these info websites can be useful.
(1)
Report
I agree with others that she is more advanced than Stage 1. She seems to be where my mom was when she did things like leave the stove on and forget to eat. My mom denied until the day she passed that there was anything wrong with her brain or that she had dementia. She was very intelligent, so she could "pass" during a short doctor's exam.

We finally were able to get her into AL where she would have access to call buttons, but where the staff could also remind her to come down for meals and get her to some activities. In fact, before she passed (not from Alzheimer's) we were trying out the timing of moving her into Memory Care (although she continued to insist she had no dementia while everyone around her could see it).

It did make me angry when she would deny things (like the fact that I had visited the prior day) and that she kept denying any issues (while her bills were past due). Probably because I never once in nearly 60 years ever heard her admit she was wrong about anything.

But I digress. I think you need to figure out how to extricate yourself from the situation while also keeping her safe. Her living alone is not an option as it wasn't with my mom. Can you get a home health aide? Even in this time of COVID, hopefully, your mom has been vaccinated by now and you can get someone responsible through an agency. Or are the funds available to move her into an AL facility, preferably one that also has a Memory Care unit as this transition will be inevitable? We tricked my mom into having her go there as a "trial period" to see how it went, and she ended up just staying. We made sure that she had a lot of visitors (that, I know, is a challenge due to COVID) and she eventually went along with it.
Helpful Answer (2)
Report

Find a Geriatric Physician they studied aging decline ... sorry too say is keep asking for help NOW...riding wave
Helpful Answer (0)
Report

Dear Cheddar, who diagnosed stage 1? If you look at the stages of dementia, you'll find that we're ALL in stage 1. In stage 1 there is no indication of cognitive impairment. It's really not until stage 3 that someone will exhibit dementia like symptoms. If she was told she has dementia over a year ago, she is at least stage 3 or 4, or even 5. Stage 5 is the game changer. That's when you, the caregiver, notice significant issues with her daily living like money management, not realizing how much, or even if, she fed the dog. It's also the stage where caregivers realize they may be in over their head and it's time to plan for the future. The previous posts offer good suggestions.

Telling her the truth depends on what the issue is. And whose truth do you want to convey... yours or hers? If you want to correct her all the time, you'll wind up with ongoing arguments. She knows what she believes, so go along with it. I know you've tried, but you still feel uncomfortable and emotional about doing so. When you were a child, did your parents ever mention Santa Claus, the Easter bunny, the tooth fairy? Do you think they felt guilty or the least bit bothered in telling you those little white lies?

It would help if you educated yourself about dementia and its related diseases. Google “dementia” and see the hundred of results you get from YouTube videos to medical websites to sites like alz.org and dementia.org. An excellent reference book is “Surviving Alzheimer's” by Paula Scott, available from Amazon.
Helpful Answer (1)
Report

I'm sorry about your father's death. You both have been through a lot and not having your father around must be a lot for you both to handle. Often the dementia partner supplies cueing and structure throughout the day, and your mother must be working really hard to make up for that.
Does she have a routine every day that she can stick to, and have things set up for her to manage her day successfully-calendar reminders, post-its, pill boxes? The good suggestions on this site are many.
I agree with Alva that it sounds like your mom is farther along than you think, from what you're saying about bills, and possibly her losing track of when she's feeding the dog. That would make me concerned about her ability to take meds correctly.
I'm sure this seemed like a win-win situation 9 months ago before you were with her 24/7, but it's very difficult to work full time and caregive even when the person's dementia is mild. You're expecting your mom to empathize and adapt to the needs of her daughter, and that's not going to happen. She can't. It is exhausting to try to keep everything on an even keel, but upsetting her will just make it harder for her and you. She needs a caregiver, and you are not at a point in your life where that seems feasible. I don't know what to tell you about managing your frustration--the only thing that helped me was the restrictions loosening up at our local AL's. Mom moved in to one that specializes in dementia support and she got vaccinated. Such a relief! It has allowed me to be her daughter again and enjoy our interactions. We are about a month into her move and she's settling in and likes her room, likes the food, and seems like she's starting to retain some everyday stuff, due to the routine. I am so relieved.
When you say that you want your mom to move on to the 'next phase' so this one is over, are you waiting for your mom to get worse before you consider assisted living for her? It doesn't seem like that will be healthy for you or her. It does tend to be easier to get a person into AL when they're still able to adapt.
Do go ahead and get your mother vaccinated so that you have one less thing to worry about. As a cargiver, you may be able to receive the vaccine too.
Then sit down and discuss with your Mom, on a 'good' day, what her wishes are for her healthcare-you can phrase it as being concerned now that your dad has passed. There are POA forms online as well as templates of advanced directives that can provide an outline. Figure out the finances--does she get social security? What's the going price for houses in your neighborhood? Look at Zillow.
A visiting health aide can be brought in to do lots of little things that aren't healthcare-AM safety check/med administration, light housekeeping, preparing lunch, taking your mom for a walk, etc. Again, great suggestions in these forums.
I would consider any of the following:
1. If your mom is still pretty young, spry, and social, you might want to sit down with a financial advisor and see if a CCRC would fit the bill. Those require a chunk of money up front and a monthly rent, but they can move you from IL to AL to MC without the costs increases you would pay if you were doing a monthly rent like at many AL's--some places have skilled nursing or rehab on their campuses too-you would need to check what they offer. They also seem to be more willing to 'carry' a person if that person runs out of savings--they may accept medicaid from long term residents if that happens.
2. Assisted Living (so you can go back to being a daughter again-blessed relief!). They would interview your mom to see what her needs are and bill accordingly. She would be in a community of similarly aged people.
3. Housekeeper/Aides/Neighbors, you stay in the house, but find a place outside of it to work. AL/MC eventually
4. Housekeeper/Aides/Neighbors, you move out but do what you can to support your mom. AL/MC eventually.
Best of luck,
Helpful Answer (3)
Report
MaryKathleen Mar 2021
if you decide on a CCRC, and they want Buy-In money, be sure they are solvent. I have a friend who did this, spent a lot of money on the Buy-In, only to have the company go bankrupt within 2 years and the new company said they aren't going to honor the old contracts. No more skilled nursing
among other things.
(0)
Report
I wrote this response on another, similar post expressing anger & resentment at 'having' to care for a parent after choosing to move in with them:

In order to care for an elder in house 24/7, you really have to WANT to do it, otherwise, the resentment and anger will set in & it's hard to get rid of. I know I could never do it myself, so I placed my folks in Assisted Living when their care needs required it back in 2014. Dad passed in 2015 and my mother is now 94 with dementia, and living in Memory Care Assisted Living, incontinent and wheelchair bound. I would literally have shot myself by now if I had her living with me........no way would I be able to do it! It would have ruined my marriage as well, to be quite honest, because we would have no alone time and no privacy.

If you feel you can do it, great. If not, look into Assisted Living or Skilled Nursing for your mom. She's still young, I imagine, so you can be looking at a lot more years or decades of care ahead. Be honest with yourself, and don't let GUILT drive your decision. My mother has had a very good quality of life AND care in Assisted Living these past 6+ years, and I believe her life has been extended as a result of the excellent care she's received by the attentive staff.

If you choose to keep caring for your mom at home, you may want to look into therapy to help you develop some healthy coping mechanisms to deal with the stress.

Wishing you the best of luck moving forward.

************************
If you're 30, your mom probably isn't more than 70. You moved in to 'save money' but likely didn't realize the magnitude of what dementia entails...........I don't know what you mean by 'stage 1' but it sounds like your mother is further along the dementia highway than you realize! In any event, you have a lot of options; in home care, selling her house & moving her into Assisted Living with a Memory Care annex.......living with her is not the ONLY option available. Most residents of AL have been vaccinated now, or are getting vaccinated, so that issue is being dealt with accordingly. Make up YOUR mind as to what you want YOUR default future to look like if you do nothing. Resentment and anger is like acid burning through YOUR body and killing YOU. At 30 years old, you have your whole life ahead of you. Make the most of it, my friend.

Good luck!
Helpful Answer (5)
Report
Nazdrovia Mar 2021
This is very good advice. An answer to the situation I'm in also we thought we were doing the right thing at first looking after our father but now we're regretting our decision.
Fortunately though my father is 85 and not younger. Otherwise I wouldn't be able to cope. We have the option of rethinking his accommodation. Its just getting my siblings to agree. What I mean by that is. They are regretful and feel bad that we've been (my hubby and i) lumbered with our father in our home, but I think if the decision to put him into care was put out there, they wouldn't be too sympathetic as they say they are. They don't want him. My SIL hates him, for reasons that would take too long to go into. my brother has always had a difficult relationship with our Dad, and my sister feels like an orphan now that our mother has passed away, as my Dad has never really liked her much. So all we have is his money. Who cares??? What's money in place of the happiness of getting along with our lives. Sorry to rant and impinge on someone else's post.
(0)
Report
This could be my story but mom has an independent living apartment in a senior community. She has a part time CG. Sister and I do finances, medications, order groceries, pay CG and many other chores.

My sister walks on water but all my mom does is try to create drama with me( always been like this) and pick fights. This stress has caused flare ups with my IBS. I try very hard to avoid conflict.

The thought of checking in on her each week and sorting her pill boxes gives me anxiety. I have hung up on her and walked out telling her I will not fight.

Dementia has increased and no new memories created per her doctor.

Refuses to shower and if she is alone she just sleeps. She is prone to yeast infections and UTI's so needs her showers with CG. Confabulation is horrible and its hard to ignore everything.

My dad passed last June. Is this depression causing more of a decline? I keep her doctor informed. He is a geriatric specialist.
Helpful Answer (1)
Report

You say you moved in because of her needs AND because of your own wish to save money. I feel this was very unwise. This is creating a mess of interdependency. What are your plans for the future, when your partner is not traveling? Are you intending now to dedicate the rest of her life (how many decades might she live) to your care? If not you are now enabling her to give up all autonomy including how much she feeds the dog. She will become more and more dependent and will resent it, causing constant fighting.
I feel this move in was an unwise move. You don't say who diagnosed your mother as stage 1, nor what that doctor's suggestion was for her care. It is best your Mom stay independent and on her own until she cannot; she should then likely enter into care unless it is indeed your intention to devote your own and your partner's life to a very difficult several decades, that will continually increase in difficulty.
The choice is yours. Nothing will change for your Mother, except to worsen. No one can decide for you how best to live your life. I am sorry for all the problems for you all.
Helpful Answer (9)
Report

Your feelings and frustration are quite valid. I am in a similar situation with my mom. She appears to be in the cognitive decline stage and not ready to get her tested re dementia yet and since it's pretty mild there's no real reason to at this point.

She drives me crazy though. Conversation is often surreal and completely boring. I have just come to accept it. That's the way it is and it's not going to get any better. So, as I have told my sister that she goes to visit once a month or so, EXPECT the conversation to be boring, repetitive, and often have confabulation added in for good measure. So, you need to come to terms with conversation being what it is. Don't expect more. It's hard but, mom is different now and recognizing that and making peace with are going to allow you to be calmer. I used to get pretty worked up about my mom's repetitiveness but once I figured out that it's never going to improve, I was able to be much less annoyed by it which is better for both of us.

A very simple thing I do, is take deep, calming breaths while this is happening. It helps me relax and be less agitated.

Try to remember that some things just do not really matter. If she says she hasn't had popcorn in forever but you KNOW you gave it to her last night, so what? Make some vague response, no need to correct her or try to get her to remember that she actually JUST had it. Her brain has changed and that's the new reality you are living in.

If you are trying to work from home and her constant chatter is interrupting you, that would be a good time for you to have a caregiver in for a few hours so you can go behind closed doors and do your work in peace. Put in ear plugs or put on a white noise machine or something to block it out. We've had PT people in the house and they wear masks so it is totally reasonable to have helpers.

I have taken over a few things from my mom. Like her bills and setting up her meds. She can technically do it, BUT it was stressing her out and she was complaining about it all to me all the time. I was doing half of it anyways and DONE with the complaining so I told her it would be easier and less stressful for ME if I just took care of it myself. Maybe you can try something like that with your mom?

Regarding appreciation, don't expect any. Do what you're doing because you want to. Because it's the right thing. Etc. Not because you want her to acknowledge and appreciate you. Feel good about what you're doing and be proud of it. Let that be enough.

Best of luck.
Helpful Answer (1)
Report

You are not alone.

Your feelings are valid.

Therapy may help with processing your feelings.

I found in therapy I learned to better identify the emotions I was feeling. Sometimes what we label as anger is fear, frustration, disappointment, denial, sadness etc.

Instead of thinking of while lies, does it help if you think of them as therapeutic fibs?

In your Mother's mind she believes what she is saying is true. And if her short term memory is shot, it is true.

Sadly your relationship is going to change over time, but it is unlikely to get better. Your Mum will lose more and more of her memory, higher executive function etc. She will lose the ability to relate to your reality even for short periods of time.

Getting help is not only for Mum it is to give you a break. Perhaps none of these would help, but I am throwing out some ideas. Some would have to be in the house

Dog Walker
House keeper
Gardener
Someone to do the laundry
Someone to play cards with Mum
Someone to watch Mum, so you can get away to spend a weekend with your partner.
Meal prep
Grocery shopping

When my Mum was paid up after her knee surgery, she had a dog walker, meal prep, gardener (he started before the knee surgery), light housekeeping etc. Yes, we did this during Covid, as it was necessary, and I was not prepared to do it all for her.

If Mum does not have her Will, POA documents etc up to date, this is a priority as soon she will not be well enough to execute these very important documents. You can tell her it is to help her until she recovers from her "Chemo Brain".

Next step would be to have a needs assessment done. Be very realistic, you are helping her pay the bills, can she prepare a meal? Remember meals include grocery shopping, menu planning, preparing the meal, eating it, and cleaning up again?

Is she still driving? If yes, what alternatives are available for when she is no longer capable of doing so?

Getting dressed and personal hygiene? This includes laundry, bathing, toileting, washing, brushing teeth etc?

What is the plan for when she needs more care? That time will come sooner than later. Are you prepared to provide 24/7 care? What about memory care or another facility?
Helpful Answer (10)
Report

This question has been closed for answers. Ask a New Question.
Ask a Question
Subscribe to
Our Newsletter