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?
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?
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.
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.
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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!
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.
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:
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...
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.
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.
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,
among other things.
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.
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