Taking time off work to care for LO.
This will be a series of personal questions, and I apologize.
- Has anyone taken time off of work to care for a LO?
- If so did you regret it?
- What challenges did you and or your LO face?
- Did you take advantage of family care giver programs?
- Did you have issues getting back into the work force?
- Did you leave the workforce when it you were younger or older?
- Did your age become a factor?
- If you had the option would you redo it?
Another set of questions;
- Is it worth even keeping the pooled trust if I am going to around her more actively and plan on traveling with her.
- Would you recommend I look for placement know with her so she can be an active in the process or is it not worth since it is still so early.
- When it does come to placement do they allow you to take your LO out for vacations, or do they prevent such things due to confusion.
- It is common to have an open door policy where I can visit whenever, since when she is placed I hopefully will be back at work and my hours will probably be crazy if they are anything like they are now.
- Do you recommend I discuss finding her an AL or retirement community now so it is not so jarring. I am not sure if her voucher does carry over to retirement communities.
- If she did join an AL or retirement community I assume she is free to come and go as she pleases correct?
- Is it morbid of me to want to get her funeral arrangements done now.
- Unpacking and repacking bags if she is not engaged in something like knitting. My guess she is trying to keep busy.
- Recently found a bar of soap with bite marks.
- Gets easily lost in unfamiliar places.
- Can no longer recall today's date or month. Assume thus is exacerbated by lack of stable routine.
- Sometimes refers to me as her husband, or father only when strangers ask. If someone she is familiar with asks I am her son, though I do think she sees me as much younger.
- Likes to fill up containers like bottles, jugs, cups with water and leave them around the house. Unsure if it is that she forgets or a control thing.
- At night sometimes I hear voices from her room. I assume she is talking to herself. I have seen her talk to the mirror on a rare occasion and views them as a different person.
- Many of the behaviors are really only apparent when someone is not in the room or she is not busy.
- She loves folding cloths, towels, paper towels, aluminum foil.
- If she loses something she will always say someone came in the house and stole it.
- She is forgetful with things at times like money. Once saw her trying to to give someone napkins as a tip thinking it was cash. Mainly happens at night. For example if she is feeling lazy she will call me up and ask if I can order her a coffee via Ubereats or something. She always tips them, I know I have to be careful with this though cause she could give them than expected. This is why I only have small bills in her house. I have her debt card, she uses my credit card to buy things and it has no cash back or withdraw option.
- Her word recall has become slower as of late, she will find the word but she struggles finding the word.
- Her memory has also gotten much worse, she has to keep a notebook with her at times because sometimes she will forget the question she wants to ask from one moment to another.
- She still cooks for herself and her aid she does not like anyone else cooking for her and will not eat anyone else cooking beside my own at times.
- Her hygiene is still in check.
- She is able to clean but she does pack and unpack so it is not like anything gets organized. Her apartment is more cluttered verse dirty she mops and sweeps daily.
- She is unable to use a phone but she is able to use voice commands like alexia to call people, check the weather, turn on and off the TV. She does not remember channel numbers but she recalls the name of the station.
- She still remembers some things from the pervious day. Like if we go shopping or see a movie she will recall the event but not what she bought or saw.
- She is able to dress herself appropriately when going outside though around the house I have found she likes to stack clothing. Like wearing five different scarfs. The light ones I do not know the proper name. She also wears like five different watches.
- She is unable to draw a clock but she is still able to read a handless watch. This one confuses me greatly.
- She does not recall her date of birth, but if I show her a list of dates she can pick which one is hers, same with her social, and my phone number.
- She does go to the Starbucks or Dunkin in the morning to get her coffee and a snack. I do have an apple air tag on her keys and apple watch for GPS purposes.
- She does struggle with keys depending on the time of day, morning she is fine, evening it is like her brain just turns off at times.
- Is able to use the bathroom fine.
- Does not meet help with meal prep but I still help anyways.
- Is unable to grasp how to use a tablet or any newish form of technology. Voice commends shocked me.
- Technically she can still drive, I only let her drive with me in the car and around an empty parking lot.
- She is active does enjoy walks, gardening, things of that nature.
Comments
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If you can afford to take time off from work and you feel it will be a comfort to your mother, then no problem. Just make sure that whatever you do does not impact her acceptance for Medicaid.
It is never too soon to start looking at facilities for long term care. I doubt a "retirement" facility will be what she needs given her issues with falls and seizures. Assisted living with a later move to Memory Care will most likely be what she will need.
The "what do they allow" questions are ones to ask of the facilities you look at. Each has their own rules and regs.
You will probably want to have an attorney well versed in Medicaid criteria to discuss your questions on the "pooled trust".
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Abzu, you are dealing with a lot. I hope you get some clarity from her neurologist, I’m assuming that you will give the list of observations to the doctor.
Yes, your mom will get worse and that is difficult. But your mom will still be the same in ways that make her her. Only you know if your mom would like to be involved in decisions regarding her own future care. My mom did not so I planned everything behind her back. When you mention looking at places, ask if your mom would like to be there. Most recommend not involving the PWD as it is usually too overwhelming for them. As you know the more stress your mom is under the more severe her cognitive issues.
As far as you taking time off work that is an incredibly personal decision. You stated the decision would be in about a year and so much can happen with your mom in that time. I’m hoping you will have clarity the closer you get to the time you need to make a decision.
I agree with loveskitties that you need to check with the lawyer about Medicaid,pooled trust and other legal things. Also agree your mom doesn’t sound like a candidate for retirement community but perhaps AL leading to MC. Do not stop your own life for your mom. Support her, comfort her and help her get settled in a safe environment and you will feel very relieved. Your moms behaviors sound very familiar to everyone who has a LO with cognitive issues.
Keep posting and reading the other posts!
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Thanks for the information, I will look into speaking with an eldercare attorney. Yeah, I agree it is an extremely personal choice. I wish I could still find someone that did it. I am worried about my future with employment options even if i keep up with my training.0
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My mother left her job as department head of a truck line when I was born. She returned to work 16 years later, when my youngest brother started school. She was 40 years old, and the best job she could get was entry level clerical work, because she had been "unemployed" so long.
Problems? We were poor. I recall arranging blankets so that the hole in Blanket A did not align with the hole in Blanket B, and a winter I didn't have a coat.
Regrets? None. She would have done it again.
Bottom line: Quitting your job will cost you a fortune. But it's only money.
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Thank you for your feedback, I do appreciate it. I will speak with my team leader on Monday and see how about shifting positions from R&D to analytics pay is roughly around the same, just boring I am able to work from home outside of showing up for quarterly meetings. I will also look into doing another masters program during the time off.
With that, I just got back from the doctor, we left with far more questions than answers, and a crap ton of referrals. Visiting Nurse, Health & Behavioral management, Occupational Therapy, Geriatric Psychiatrist, Geriatric Dietitian, Cognitive Assessment, Full Blood work, and they are looking into alternatives for an MRI, since they are not comfortable doing it with anesthesia due to the possible complications even though she claustrophobic, and will not sit through the test. Also have to speak with my mom's MLTC case manger cause the doctor is not 100% comfortable with her being home alone in the evening. Even if we have not had any is indicant, it is better to err on the side of caution. Which I agree with, just the appeal process for more hours is just a long and arduous process riddle with bureaucratic just for the sake of bureaucratic it seems. My mother did ask about placement, though the doctor did not feel that is necessary at this time, and said at this time it is more so a personal choice to make amongst the family. So that is a conversation will be having at a later date though, one thing at a time.
They are currently torn between frontotemporal dementia or Alzheimer's. That is where testing comes into play. I think it is Vascular Dementia, even though she has never had a stroke. As the doctor said that is what testing is for. My mom and I are morbid, in the car we placed bets. That made me smile she was in good spirts afterwards. She expressed a strong desire to know all the details and be involved throughout the entire process. She is much stronger than I, I am overwhelmed by all of this. Single parents are special kind of breed of RTTT (Run Through The Tape) she was more my emotional support it was meant to be the other way around.
That is where I stand after the appointment.
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Thank you for the update. Sounds like you have a lot yet to do. Her safety is the most important but it sounds like you are on top of that.
My mom was diagnosed with FTD but it was based mostly on my list of behaviors. The MRI did show some dead areas in the front of her brain. She passed the written memory testing. She folds compulsively like your mom, paper towels, napkins,clothes. She only remembers her childhood, nothing of her adult life or my life. She does know I’m her daughter.
I’m glad your job sounds so flexible that will come in handy in the future. Can you try FMLA before leaving your career? The elder lawyer will have lots of good info concerning her Medicaid, good luck.
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On Monday I will look into FMLA, I forgot that is even an option. I have also scheduled an appointment with and elderlaw attorney to explore all of our options regarding her care. I do believe the doctors were going based off her behaviors as well, I am staying away from webMD for now, last thing I need to panic over information that may not pertain to my mother. It is hard cause I want to do more research but as my mom told me no point worry about something we have no way to confirm yet.0
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Abzu, hi, you might want to order the book The 36-hour day, you will learn a lot about Alzheimer’s and other dementia. Also Tamcummings.com/stages of dementia. Hope this will help you. The road we are on is a hard road, but you are not alone.0
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Thank you for the suggestions I will do that. Quick question, when it comes to cognitive assessment is this similar those tests those of us with IEP's had to take? So they are planning on testing her intelligence? Is that how they determine ones capacity.
Thanks for the answers.
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Abzu wrote:
Quick question, when it comes to cognitive assessment is this similar those tests those of us with IEP's had to take? So they are planning on testing her intelligence? Is that how they determine ones capacity.
Well, that in part depends on which disability is being used as a classification for the IEP.
So, kind of yes and no.
Most testing for dementia focuses more on memory specifically as well as on things like executive function (higher order thinking like abstract reasoning/problem solving) which are needed to competently manage one's IADLs and later ADLs. To compare it to testing a school aged child, it's less the WISC and more the Full Scale Vineland.
Sometimes patterns of cognitive changes can be used to help differentiate between types of dementia. My dad had mixed dementia and in trying to narrow it down, the psychologist who did his testing focused a lot of his spatial reasoning the early loss of which is characteristic of his ARD. Mixed dementia is very common.0 -
Abzu- that’s a lot to cover. I suggest you start with talking to a lawyer and getting all your moms paperwork estate, Medicaid issues understood and organized. Then move on to the next immediate need.
Start conserving your cash IN CASE you do quit a year from now. But don’t do anything in that direction yet since you can work from home for another year. Do ask for intermittent FMLA to cover your Loved ones medical visits, anticipating ER and hospital stays.
In my opinion, your Mom is going to need a memory care facility not an assisted living one, based upon the behaviors you describe, this may happen within the year or shortly after, I would hate to see you quit a job and have her placed about that same time. Tour some facilities.
I retired a couple years early at the end of 2020. My parents are in an assisted living facility, but I still needed intermittent FMLA for their doctor visits, hospital stays etc. my spouse is on disability and one of our sons has epilepsy( well controlled, but occasional break through seizures). ( It got to be that I never knew whether I was going to be able to work all day or not, whether I could work a full week or not. The stress was too much. But I would never have quit without the pension and health insurance availability that retiring gave me. Plus we had investments to use while delaying social security.
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You sound young--do not quit your job. Read about instrumental ADLs and see where she stands. The OT can help you with this.
Iris L.
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I took 5 years off work when my son was young. It took 4 years for me to find a job in my profession, and I took one that no one else wanted. (I ended up loving it). I don't regret those years out of the workforce.
BUT I now get to watch my son reach adulthood and begin his own life. There is NO WAY I would EVER want him to put his life on hold to take care of me. And I've told him this. Place me in assisted living and visit, but continue working and living your life.
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Question, why does it seem they are pushing anti depressants? My mom had an appointment yesterday with a geriatric psychiatrist for an assessment. They say an assessment is not nesscary and prescribed her Zoloft due to anxiety. Her anxiety is not an issue though. I mean she is concerned about what is to come but I do not feel that level of anxiety is enough to consider the use of medication.
Is this normal? Or did I just luck into a pill pusher? When I asked why they felt it was nesscary they claim tackling the anxiety is the early stages will greatly increase her quality of life, even if it is minor they claim you need to take care of it as early as possible.
Does anyone have experience with Zoloft, we were told it will take a month to before we even notice an difference. I am just confused by all of this. Each appointment we have it appears we leave with more questions.
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I took Zoloft for 20 years and changed to a different med after it stopped working. Antidepressants improved my life enormously. Nightmares turned into dreams.0
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Anxiety and depression have a negative affect on cognitive function in someone with dementia. add their constant crying to the repetitive questions and confusion and it all has a very negative effect on the caregiver too. My mom improved immensely once they got her on the right anxiety and depression medication. Please give it a try. It will allow you to work longer and her to have a better quality of life,0
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Understood, reason I was confused was mainly due to the fact my mom's repetitive behavior is roughly about the same for as long as I can remember. They gave me a liquid form that way I can put it in my mother's drinks without her knowing. Is this some level of doctor, patient confidentiality? I spoke with my mom she claims nothing went down, had no desire to take the medication. So the topic was brought up at the very least for the private part of the session. Afterwards they did ask to speak with me, they wanted to confirm some details my guess and to see if she was truthful--she was.
Is it possible she may have told them something I am unaware of? If that was the case why would they give me the drug in liquid form? Should I ask my mom or just give her the medication without her knowing?
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Based on the behaviors you describe in your original post above/ your Mom is beyond the point where she can make decisions about medical care on her own. That includes deciding to not take medications. She’s at the stage where getting them to take medications is a battle of huge proportions. The doctor knows this/ that’s why they gave the medication in liquid form and told you to privately put it in her drink. I know this is a hard thing to come to terms with, but that is the stage she is at. You cannot treat her as a functioning adult.
If you don’t already have a book called the 36 hour day, get it. Several recent threads have mentioned a link to a PDF called understanding the dementia experience. It will be helpful to read.
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You need to be in the room at the same time as the doctor is gathering the history. Otherwise you don't know what your mom is telling him. Familiarize yourself with anosognosia, a characteristic of dementia. She truly thinks she is fine and sees no need for doctors or medications or changes in her household routine. It's very important to understand this.
Iris
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I was reading the notes, anyone able to clarify a few details caused based off the scoring the idea of having me force her to take a medication does not appear to match up. Notes state that she was A&Ox4 with an MMSE score of 21. Notes state that she was alert and was able to track the conversation. It does state she is suffering from bouts of nightmares and restless sleep. Notes also state she is aware of her impared mental status at times, and has noticed changes over the past year that go beyond general age related forgetfulness. The notes also state that she was hesitant to take medication due to wishing to seek a more holistic approach. They also state if she would like me present for the appointment and she said no, which is understandable.
At this moment she was given a diagnosis of Early Onset, with MCI to determine what type without further evaluation. Notes also state that the type of dementia would not alter treatment plan of a low dosage of an antidepressants. Also did state that she was slightly aware of her anxiety especially in the evening and did request something that would not stay in her system. It appears the doctors wanted to prescribe a low dosage of benzodiazepines. My mother turned them down since she believes they are habit forming and could impare conginative fuction.
I have read up on anosognosia, I do not think that applies here since she was the one that requested the appointment and has been taking steps to compensate for her increased forgetfulness. Which would require a level of awareness. I am just confused, by all of this is this what they call show timing or is it anosognosia just a different form more so in lines with slight denal. I did pick up the 36 hour day have started it but I have a bunch on my plate have not gotten around to digging deep.
Guess is it going to be normal especially in the early stages where the disease and what has to be done will not line up with what can be done due to the fact my mother is still in control of her ship so to speak.
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Abzu - what a wonderful, caring son you are. I am so sorry you are in this situation as we all would rather not be. It is a rough disease and only goes one way as you know. This forum is a lifeline. Long response here, but I wanted to chime in also plus here are a couple of links.
Yes, I have had to take significant time out of the workforce to care for DH. No other option for us. The caregiver shortage due to covid also means respite and day program options are limited. It makes financial decisions extremely important since, if I am able to outlive my LO's dementia, I will not be as employable as I was when I left my career, as you mention. The options for most Alzheimers and other dementia-impacted families are stressful and sobering so I agree with those urging you not to quit your job. Especially if you like your work or colleagues, etc.
FMLA is a good way for you to take some time to be with your mom around the clock for a week or so at a time, to really observe how things are when no one else is there. Did you say if she lives alone? Risky, if so. On diagnosis I was told to "watch him". Very important for his safety and my learning curve. I was really shocked in just a couple of weeks of observing DH like a hawk. Made it clear he really didn't have a clue how impacted he was, and that was so dangerous. The Dr. also said "you're in charge now". And I will say this to you. It doesn't need to be in her face, or for discussion. Just shift your mindset quickly though, please. It was hard for me not to make everything a joint decision with my DH suddenly, but it was necessary. You can do it.
My thoughts:
- Try the meds. It can reduce any restlessness, improve her quality of life in ways she won't recognize. The anxiety meds may counteract the sundowning (afternoon/evening step-down you described).
- I agree you need to be in the room for Dr's appointments. She is not a reliable reporter, to you or to the Dr., even if she thinks so.
- Anosognosia was in play even when my DH heard and knew the diagnosis. He didn't disagree that he had it, but just could not perceive that he was impaired in any way.
- She really is not steering the ship anymore based on the behaviors you listed. Hard to accept, but you are letting someone's dementia call the shots for you both if you don't take charge. Teeth marks on soap means she could drink chemicals, or anything.
- My understanding is that EO progresses much faster so, she could really get herself in a pickle before you even realize the progression from here, if you don't take your role as decision-maker and protector more seriously right now.
- This is a time for guardrails with money, driving, meds, more supervision and many other decisions, unfortunately. Don't wait until after something bad occurs. Most of us feel our LOs are not as far along as they really are.
- Yes as you mentioned it is often show-timing, and I would add our wishful thinking. Plus it just takes time for us to realize that our LO may look and sound the same especially in the earliest stages, but really isn't functioning normally. It can be the most dangerous time.
Here are some of the links I have found most helpful. Good luck to you!https://tamcummings.com/stages-of-dementia/ https://www.alzinfo.org/understand-alzheimers/clinical-stages-of-alzheimers/ https://www.vha.ca/news/2021/compassionate-care-strategies-using-the-7-as-of-dementia/ 6 Ways to Help Someone Who Doesn’t Know They’re Ill: Anosognosia in Dementia – DailyCaringAnd this excellent article - helpful to share with interested family and friends also: http://www.dementiacarestrategies.com/12_pt_Understanding_the_Dementia_Experience.pdf
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Abzu wrote:
I was reading the notes, anyone able to clarify a few details caused based off the scoring the idea of having me force her to take a medication does not appear to match up. Notes state that she was A&Ox4 with an MMSE score of 21. Notes state that she was alert and was able to track the conversation.
I'll give a go. A&Ox4 is medical shorthand meaning the patient is awake and alert and is alert and oriented to person, place, date, time) She knew who she was, where she was, the day and time.
MMSE is a quick and dirty screening for cognitive shift. A score of 21-25 is considered mild dementia. Sometimes bright people with cognitive reserves can score somewhat higher than expected given behavior for a longer time than most. This tendency to score higher than expected is sometimes seen in FTD because memory remains intact longer than in other dementias. Dad scored as expected for his age and education level about 9 months before he died from complications of aspiration pneumonia- I feel like this is something of a blunt instrument.
It does state she is suffering from bouts of nightmares and restless sleep. Notes also state she is aware of her impared mental status at times, and has noticed changes over the past year that go beyond general age related forgetfulness.
Early on in dad's dementia, he was aware, at times, of his cognitive shift. He could recognize his issues around memory, but could not recognize the greater difficulties he had with executive function skills, abstract reasoning or spatial processing. He considered his memory loss "a normal part of the aging process" and convinced my mom his was OK because he could recall all of his childhood addresses.
The notes also state that she was hesitant to take medication due to wishing to seek a more holistic approach. They also state if she would like me present for the appointment and she said no, which is understandable.
With a score of 21, indication she is on the cusp of midstage dementia or some kind and with you even considering giving up your life to provide needed care, she really isn't in a position to be calling the shots any more than a kid who doesn't like needles gets to opt out of them.At this moment she was given a diagnosis of Early Onset, with MCI to determine what type without further evaluation. Notes also state that the type of dementia would not alter treatment plan of a low dosage of an antidepressants. Also did state that she was slightly aware of her anxiety especially in the evening and did request something that would not stay in her system. It appears the doctors wanted to prescribe a low dosage of benzodiazepines. My mother turned them down since she believes they are habit forming and could impare conginative fuction.
I thought they wanted to trial Zoloft which is a SSRI that is considered a good choice for anxiety. Sometimes a geripsych will prescribe a short course or an "as needed" low-dose benzo during the time an SSRI is started but not yet at levels that would provide relief.
I would caution you that anxiety is very, very common in dementia. Presentation can be subtle for those who are uninitiated- it can exacerbate repetitive thoughts and behaviors, cause poor sleep and nightmares, irritability, agitation, aggression, combativeness. The other piece to this is that sometimes a PWD has a lifelong history of mental health issues that cloud the onset of their symptoms. If mom's baseline was "anxious" you may be so used to it, it doesn't register with you as a concern.
If your mom is at a point where she needs a caregiver, she is past making the decisions on care. There is no harm in following the best practices for dementia in terms of diet, exercise and mental engagement along with medication for mood.I have read up on anosognosia, I do not think that applies here since she was the one that requested the appointment and has been taking steps to compensate for her increased forgetfulness. Which would require a level of awareness. I am just confused, by all of this is this what they call show timing or is it anosognosia just a different form more so in lines with slight denal. I did pick up the 36 hour day have started it but I have a bunch on my plate have not gotten around to digging deep.
Odds are she was "on her best behavior" with the doctor. I mean, who wouldn't be especially given the nature of the visit. Whether it rises to showtiming is less important. There's also the consideration that neurologists tend to keep banker's hours- they aren't likely to see their patients accusing family members of theft and wandering around at night.Guess is it going to be normal especially in the early stages where the disease and what has to be done will not line up with what can be done due to the fact my mother is still in control of her ship so to speak.
Have a Plan B. If you can't/won't act now, have a plan for when she inevitably runs her ship onto the rocks.
Personally, I would not step in as caregiver unless I was making the medical decisions.
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Commonly Used Abbreviations
DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
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