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First time posting…how do you help when they won’t let you

Hi, I apologize in advance for the length of this!  Where to start!?!

MIL (78) appears to have dementia/Alzheimer’s. She lives 1500 miles away from 2 of her children.  Lives with her husband (who is not in good health) and nearby her other daughter who has MS.   She does not go to the doctor hardly ever. We’ve noticed over the past 5 years or so her memory failing, refusing to be reasoned with about certain situations and anger but it was manageable and did not seem to interfere with daily living. About 16 months ago we noticed it getting worse, DH tried to get her to go to the doctor because she was not sleeping well, paranoid, was adamant that people were in her house at night and her memory was getting much worse. She initially agreed but when he mentioned talking to the doctor about her memory she cancelled the appointment and refused to go, then COVID hit. We saw her once last summer but have relied on his sister that is nearby and his dad for what was going on with her.  In March, DH and his other sister went to visit and could immediately tell that things were much worse. They have visited every couple of weeks since March and things seem to be rapidly declining. DH got her to go to the doctor in March and she started some meds to help with hallucination/paranoia and anxiety, they may be helping slightly (at least 1 is helping her sleep so that’s helpful).  Her doctor has not diagnosed her with anything as of yet, but she also is able to hold it together pretty well when she sees him and has basically put up a pretty good barrier when he is trying to talk to her. However, DH is a family practice doctor and his sister is a neurologist and both feel that she is suffering from some form of dementia.

What we are seeing at this point (some of these we’ve seen over the last several years but a lot has started in the last 6 months):  delusions that women and children are in her house at night, husband is letting these people in, these people are moving stuff all over her house and hiding things, husband (84 with COPD and on oxygen) is having affair with these women, husband is beating her, someone is hiding her purse constantly, sewing her purse shut, hiding her keys, taking her things, anger at the drop of a hat, cannot be reasoned with, constantly “losing” things (DH was able to find most things she had lost like jewelry rolled up in her fabric…at which point she told him he was conspiring with his dad and his dad hid it and told him where to find it), talks about teen children as if they are very young when we visit, difficult time cooking as she can’t remember her recipes and has a hard time following a recipe, while driving one day got to a place she has driven for 40+ years and had no idea where she was (daughter with MS was with her, they try not to let her drive without someone with her), put sunglasses in her purse at store because she needed some new ones and when daughter told her she needed to pay for them she got very angry and scolded daughter as if she was a toddler, unable to tell which side of Uno cards to look at while playing Uno with grandkids, unable to tell if food is bad or not…just to name a few of the things we are seeing.

We are currently working to move all 3 of them (MIL, FIL, and sister with MS) near us (my other SIL live 45 minutes from us) but MIL is refusing.  She does not recognize (or in denial) that anything is wrong with her or that she needs help (refuses help from us and from nearby daughter).  She is convinced that all of this is caused by her husband and the people he is letting in the house (they have not had a good marriage at least for the last 40 years, not sure if they ever did).  

So, my 1st and main question, how do you help someone when they are adamant they are fine and don’t need help? We feel like she is at a point (probably past the point) where she needs someone around pretty consistently thus the reason we are trying to move her next door to us. Do you have to have a diagnosis and if so, how do you get that if she refuses to any further testing and puts up a wall with the doctor? 

I know I have a lot more questions, but thought I’d just start here!  Just looking for advice from someone who’s been there.  Thank you if you made it this far!!

Comments

  • M1
    M1 Member Posts: 6,788
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    Welcome COred.  Not too long by any means.  Glad you've found the forum.

    One of the children needs to have durable and healthcare power of attorney for both of them--with two docs among the children, that seems like a no-brainer, hopefully that's already the case.  So that her refusals really don't mean much, any more than a toddler's would (sad to say).  You probably can't expect her to like it, but she's past the point of making rational decisions.  Maybe dad is too?  In terms of actually getting her in the car or on the plane, it will be a matter of gentle fibs--going for a visit, etc.  She doesn't need to know or be told that it's a permanent situation. 

    One of the early lessons from the forum is giving up quickly on trying to reason with your LO with dementia--only frustrates everyone.  Their brain is broken and beyond it.

    If the delusions and combativeness continue, she may need hospitalization on a geriatric psych unit to get meds regulated, this is not uncommon.  Surely the daughter who is a neurologist recognizes this.  The meds for delusions (like Seroquel) are not beyond some good general practitioners, but a geriatric psychiatrist can probably get the doses regulated quicker.

    BTW, the driving thing needs to stop probably yesterday.  Ongoing issue for me, so I know how difficult it is--but the consequences can be lethal and financially devastating.

    So difficult for all of you, including the daughter with MS who is close--MS is a tough illness in and of itself, I'm sure she feels overwhelmed.

    I'm sure you'll get lots of other input, there are many wise and generous folks here.  As I sad, glad you've found the forum....

  • COred
    COred Member Posts: 13
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    Thank you, M1.  They were able to get DPOA and Medical POA signed so that’s good.  That’s so much easier said than done of just making the decisions, she’s a very strong personality which has just become that much more strong that everyone else does not know what they are talking about.  I guess I just don’t know how all of it works, yes my DH has POA but I’m assuming that he doesn’t just get to decide when he uses it (especially when there is not a formal diagnosis). 

    She’s always been the one taking care of everyone where they live so she is continually mad at everyone for even suggesting that she needs help or that the sister with MS is having to help them and she’s just not able to thus the need to move.  She continually says her family just thinks she can’t do anything and they are wrong as well as told my parents that her children say she’s crazy (none of them have ever said that).  That’s what my DH has been telling her, this is too much stress on the sister with MS (we’ve been trying to move her near us for 10 years but every time it was close to happening, MIL made her feel guilty about moving).  FIL and sister with MS are both on board with moving. FIL physically is in bad health but mentally he’s still pretty good.  

    I agree with the driving, just don’t know how you go about putting a stop to it.

    Thank you again for the reply!

  • Cynbar
    Cynbar Member Posts: 539
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    I haven't been through this particular dilemma, but many posters here have. This is how it usually works:

    1) Set up the new living arrangement near you, hopefully that can be worked out financially without selling their current house. You can worry about that piece later.

    2) Think about what fiblet you are going to use and get everyone else onboard. Many people have said it is just for a visit (and then it keeps extending.) Others have used a reason they have to get out of their house, like it's unsafe for some reason. 

    3) Stop all attempts to reason with her and get her consent, it's not going to happen and makes the whole situation worse. Discuss it as little as possible, and then just do it. Get her into the car, and keep driving. It's usually a good idea to have child safe locks in place so she can't jump out. Smooth and firm and succinct should be your approach. This may sound a little farfetched, but it has worked for other people.

    States differ on their laws, but a medical POA is usually activated when a doctor certifies in writing that she can't make her own medical decisions. As far as the DPOA, there are basically 2 kinds. One is in effect as soon as it is signed, and the POA can do business anytime for the subject. The other is "springing," it has to be activated by MDs again certifying that she can't make her own decisions. It's important to read the documents carefully and understand them. You will also need to see a certified elder law attorney in their new state to see if there are any differences in the laws and documents needed.

    One other thing --- it's important that her doctors have all the information on what her family is seeing, to help with diagnosis. They often can't talk to family because of HIPPA regulations, but they can take info in. All of this is difficult to discuss in front of the person with dementia, so the usual recommendation is to send an email or letter in advance, so the doctor has a chance to study it. And, there is a written record. This is partially useful for patients who manage to present as a lot better when actually with the doctor.

  • COred
    COred Member Posts: 13
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    Thank you Cynbar!  I will pass this info along to DH and his sister.  We’ve already got a home for them, the house next door came for rent last month and we rented it.  However, it’s unfurnished so we need to move their belongings here so MIL will see that her stuff is packed up or that her stuff is in the house.  

    Thank you for the info on the POAs as well.  My DH is honestly so wrapped up in trying to help them, get them moved here, dealing with the quick rapid decline and all the emotions that come with this that I’m trying to not to ask him questions too much.  We have lots of discussions and I listen to him and give my thoughts when asked but I’m just trying to give him some space to not only deal with everything but to grieve for what’s happening to his mom and what he knows is coming with this medically.  While he has experience with AZ patients as a medical provider, it’s a whole different ballgame from this side.  I know this will definitely help him as a doctor with AZ patients and their LOs.  I should also correct myself from earlier, his sister is a neuro oncologist, so she doesn’t have much interaction with AZ patients (unless they have brain cancer).  

    As for talking with her doctor, we are fortunate that MIL give permission for DH to speak to her doctor and her doctor to speak to him (signed HIPPA forms or whatever needed to be signed).  He is a FP doctor with a specialization in geriatrics and a friend of DH’s from residency (this was the only reason MIL agreed to go to the doctor because DH knew him).  They speak before and after her appointments.  I don’t know how this is done but to me it seems to be slow going to get a diagnosis…is that because MIL is able to put up a wall with him and hold it together for appointments, because she won’t agree to any testing, because she’s only seen him once in person and the other 3 are by phone, all of the above??  I know the doctor is trying to establish a relationship with her.

    Thank you again!

  • Quilting brings calm
    Quilting brings calm Member Posts: 2,484
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    Since your MIL has always taken care of everyone where they live … try this: 

    SIL with MS needs to move where you are ( weather is better, better doctors, whatever fib you can make).  SIL needs a lot ( a lot) of help to get settled, Mom, so we need You and Dad to temporarily come with her to help.  You are so good at helping, Mom.  So  pack what you need for a few weeks. 

    Without telling her ( tell Dad since he is on board): Arrange for the actual movers to come the same morning you are leaving.  OR Arrange for them to come an hour after you and she leave.   Pay more so they will box everything up,  leave DH to supervise and come a day later. Or you stay and DH starts the trip with her.  Will you have a bunch of stuff moved  that you don’t need to?  Possibly.  

    When we did our emergency move of my parents, we had 9 days notice.  We arranged for movers to come the day we were leaving and they packed everything that we were having them 

    move.  They disassembled furniture as needed. They were done in 4 hours.  We had to pack up stuff that was going in the car with us ahead of when they showed up, and throw away what wasn’t moving at all, also before they showed up.  We paid for storage in two PODS for 30 days.  A different moving company showed up where we told them to at the end of that 30 days and unpacked everything in the pods. We unpacked the boxes, and they set up the furniture. It was from Alabama to Illinois. 

    It may take a day or two for their furniture to catch up. Once it’s there. What is she going to do- single handily arrange for a move back? She will just have to throw a temper tantrum and pout for a while. 

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  • harshedbuzz
    harshedbuzz Member Posts: 4,479
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    COred-

    That's a lot of moving parts. Yikes.

    Do you know if the POAs were drawn up by someone who specializes in elder law- specifically a CELA and were they drawn up to be durable and survive mom's incapacity? 

    IME, personality remains strangely intact well into the final stages of dementia. A challenging and headstrong person will remain challenging and headstrong at best. At worst, they will become an amplified version of their former selves without a social filter. It sounds like MIL was captain of her own ship- you'll all need ways to work around this.

    It also sounds as if mom has anosognosia. This is a condition where a PWD is unable to appreciate their change in cognition and abilities; in their mind, they are as capable as ever and any suggestion otherwise is patronizing. Again, you work around this.

    She needs to be diagnosed. One of her children could reach out and share their concerns with her PCP; it will have to be a one-way conversation unless MIL has signed a HIPAA waiver for them to be looped in. It sounds like she showtimes for the doctor. My dad did this as well, exchanging jokes and curses in Yiddish with his Israeli-born geripsych. Dad's mostly Irish, fwiw. Because dad showtimes during his appointments, I sent the doc short video clips of "the real dad" acting out at home in order to make a case for medication adjustments.

    Stop talking. It sounds like her children are trying to reason with her on the various ways in which moving near them is better. Rule one of Dementia Fight Club is we don't reason with a person who has a broken reasoner. Make the plans with dad and sis and whom ever holds POA pulls the trigger on the move.

    You may need to create a "fiblet" to execute the actual move. Since she's a helper, you could bring her to your area for "vacation" to help care for kids over the summer, to help you pick paint colors or for a family reunion. One woman here, moved her dad away from an exploitive girlfriend by "taking him out for breakfast" and driving him over 1000 miles to her house. She boxed up and shipped clothing and important documents ahead of time, stashed an overnight bag in the trunk when he wasn't looking and just kept driving.

    Once you get her here, perhaps you could arrange a doctor's appointment under the guise of needing a prescription refill or "new Medicare requirement for coverage".

    The house next door doesn't sound like a sustainable plan. It will involve all of the same issues they have now but with the potential for agitation from the move. It doesn't sound as though her husband or daughter are up to the emotional and physical aspects of caregiving and being next door won't improve that unless you are there 24/7. Since you aren't moving them into your home, I will assume you aren't up for that. If it's a hot market where you are, I would sell and get the parents into a CCRC if you can. Dad might be an appropriate fit for assisted living and mom could go to a memory care unit on the same campus. Sis could make her own arrangements.

    When I moved my parents, I ended up doing it in stages. While dad was hospitalized and then in rehab, I moved some of their stuff to an apartment and listed their primary residence. Once that sold, I moved them to a house and listed their place in FL. I handled all the transactions and logistics of the move and the weekend of the move to the house, I put them up in a nice hotel. 

    For the driving. It needed to stop yesterday. This is a just make it so situation. If she were to have an accident they could lose everything. She would be found at fault and could be sued. Picture her a year down the dementia road defending herself in a courtroom because that's what you are opting in for. The best scenario is to have a doctor tell her to stop which allows families to validate frustration and keep agitation to a minimum. Cars are often a trigger, so sending her to the shop to "await a part that is delayed in shipping because COVID" is often a good strategy for driving. Out of sight, out of mind generally works quite well. 

    Good luck.

    HB

  • LevisHouse
    LevisHouse Member Posts: 29
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    COred - I'm fairly new to this forum as well and so glad I'm now connected. You asked what has helped and this is definitely one of those things.

    I'm going through a very similar situation. My aunt is in CA and I'm in MN. She has no children and my sister and I are all that she has for family. My aunt has been fiercely independent all of her life and stubborn to the point of being her own worst enemy. She refuses help of any kind, she has been messing up her finances, not remember details or confusing them, she isn't eating and what she is eating is is leaving her malnourished, she doesn't change her clothes, she is combative and argumentative, and she never stops talking - she is on the phone for hours every day calling just about anyone whose phone number she comes across. Plus, she is in the midst of a very difficult legal situation having to do with a "financial advisor" who died and had stolen millions from his clients - she doesn't understand any of it but talks endlessly about it.

    I had started the conservatorship process and now I'm moving to an emergency petition. I'm dreading the day she is notified and the court investigators show up to her home. She is going to feel betrayed and angry and all of that is going to be directed at me. As someone on this forum suggested, I'm bracing myself because I know it is going to get worse and may never get better.

    So along the way, I've learned what a therapeutic fib is - and this is proving to be the best approach to minimizing my aunt's stress - and it works. Sometimes to avoid lying I will pivot the conversation. Or I've learned to say "you know I just want to do exactly what you want" or "I'll do whatever you think is best" - all of which is kind of true. You mention that your MIL has always been the one to help others. Lean into that. I saw someone else suggested telling her that you or your SIL need help on the other side. Perfect. Do that. But reasoning with your MIL is no longer going to work - the disease has made it impossible for her to take in new information and make sense of it. It isn't just that she doesn't want to leave home, it is that she can no longer figure out how to make sense of the new one.

    In terms of the doctor - she will think she is fooling her physician, but she isn't. The medical team knows. My aunt thinks she is appearing "normal" and in control - but everyone around her sees the reality of the situation. I've been surprised by how willing my aunt's doctor is to take my calls, even though there is no POA at this point. I called him and said that I know he can't tell me anything about her, but I wanted to share information that I thought would be helpful. He was very open to the conversation, recognizing that for her own safety, we needed to be in touch. He listened and shared what he could ethically share. I hope you might have the same experience.

    I will also say - some people have told me that my aunt knows that she isn't doing well, but I'm not convinced. Part of the disease is not being able to recognize her limitations. It isn't like having the flu when you feel sick. My aunt knows she used to be able to do certain tasks easily - now she says that systems have gotten too complicated due to technology. So don't count on your MIL being able to ever recognize her diminishing abilities.

    Finally, lean on your trusted friends. Build in breaks if you can. Caring for someone with dementia is lonely and exhausting. I am in awe of all of the people who are living full time with the PWD - it is hard to see the person you love disappear and to live with someone whose ability to engage in conversation is so diminished.  And come here often - even if you don't post, it is helpful to know there are others out there who share your experience. Deep breaths help, too. 

  • Lor2014
    Lor2014 Member Posts: 26
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    You need to find physicians who specialize in dementia. Many medical staff are very easily fooled by dementia patients because they believe everything they say. 

    Case in point, a trained RN asked my mom how long she had lived at a facility, and without flinching, she responded, "a short time, about 6 months." My mother had lived there for 3 years. My mother fell down the stairs (but I caught her), and she had fallen and bruised her faced (and broken her glasses) the year before, but shed denied having ever fallen.  Because she was confident in her answers, the RN told me that there was nothing wrong with her. When I asked the neurologist to take away her driving privileges because she could not see people walking in the street (my aunt confirmed this), did not recognize streets where she had lived for 30 years, saw double (confessed that to my husband), and had hit parked motorcycles and cars in the parking lot (she settled privately with cash), the neurologist's response to me was that he had many patients far worse than my mother that were still driving. Eegads. After I sent him a formal letter, outlining what I told him, he told her she could not drive anymore because of the legal liability he would have faced. What a baby.

  • jfkoc
    jfkoc Member Posts: 3,880
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    This may have been mentioned.....read the DPOA document. It will clearly state what your husband, the agent, is allowed to do.
  • COred
    COred Member Posts: 13
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    Thank you for all the replies and suggestions.  We’ll definitely consider everything you have said!  To answer a couple of questions.  We recognize the house next door is the first step and are fully ready and prepared to move MIL in with us as soon as it’s needed. I’m a stay at home mom with all kids in school so I will be around as much as needed.  While FIL is limited physically he is able to observe and report to us when we aren’t there and SIL is doing pretty well with her MS right now and is the person MIL seems to trust the most right now.  This is the start and we will adjust as needed to get/give MIL the care she needs.  We just have to start with getting them all here.  

    I see multiple comments about MIL needing to be in some type of facility (sorry, I’m not sure what to call the umbrella of all the different placement types).  While she is exhibiting the behaviors I listed in original post, she also is still taking care of her yard, cleaning her house, cooking meals, hygiene, grocery shops and just all around seems to be “with it” just as often as not (granted none of these are up to par to what she has done in the past and she doesn’t do them as often as she used to).  It’s just a lot of the things we have started seeing seemed to start quickly and start occurring with rapid frequency (seems to be a rapid decline over the last 6 months).  Do you really go from doing all these things for yourself and your family to being in some type of assisted living/memory care?  

    I’m sure I’ll have more questions as we continue on the journey.

  • Achick
    Achick Member Posts: 2
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    Hi everybody - I am new here and can SO relate to this post - my mom is 92 years old and has dementia.  She lives in FL and I live in NY and am trying to manage this stubborn, paranoid, combative situation from a distance, although I go down to be with her as often as I can.  I do have durable poa and medical surrogate but.... the big BUT.  She lives alone, refuses to be relocated, to come to be with me, does not believe she has a problem.  I did get her on a conference call with her Dr in Dec (due to covid) and brought up my concerns that she is starting to have memory issues - he sent in a script and she picked it up but then announced that NO WAY is she going to take this medicate with all the warnings on it.  I was with her in March and she had to go to the office for annual appt.  I did let him know she won't take the meds but she put on a good act about her situation so little happened.  She won't agree with any testing, she said I am the ONLY one who things she has a memory problem. Yesterday her computer was hacked for the 2nd time in three months - and I was able to get all account password changed but I'm a wreck all the time.  I have many stories of events and scary situations but mainly I just wanted to be with others who are experiencing this twilight zone world I've been thrown into.  I love my mom but feel lonely, scared and helpless dealing with someone who is in denial, angry, combative and paranoid   Thanks, Faith
  • COred
    COred Member Posts: 13
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    Faith, I’m sorry you’re going through this as well.  There has been some good advice in this thread!  Hang in there, good luck and you’re not alone!  Hugs!
  • M1
    M1 Member Posts: 6,788
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    Welcome Faith.  It takes everyone a while to get used to the website, but you will get more responses to your specific situation if you start a new thread: look for the green "start topic" button towards the top of each forum page.

    But like COred, you should be making decisions for her safety, not her preferences, just as you would for a child.  Easier said than done I know, but long distance rarely works unless you can hire a local care manager to act in your stead.  There are lots of threads on similar situations. Good luck, none of this is easy but this is a good place to share and learn.

  • towhee
    towhee Member Posts: 472
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    COred, you asked if someone goes from doing for themselves to having to be in a facility. Sometimes it does happen fairly quickly. Vascular dementia is known for having sharp and abrupt declines. Infections, falls, other illness can cause sharp declines. In your case I think what people were picking up on that made them say facility was the paranoia, the not good relationship between your MIL and FIL, that your FIL is physically ill and will continue to decline, the fact that new surroundings often cause a decline in the person with dementia abilities and increase their emotional swings, as well as your sister in laws MS which you said does not do well with increased stress, and that you did not seem at first to have a backup support system in place. Since you seem to be the main backup may I suggest that you check out Understanding the Dementia Experience and the 36 Hour Day and Teepa Snow videos if you have not already, and I do hope that your children are in high school at least, or that your husband has some flexibility in his work hours.

    All the best luck-

  • CMDoran
    CMDoran Member Posts: 1
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    Hi,

    This if my first post. Mom is 96 and was diagnosed with dementia August 2020. There were no test done as to what type of dementia. Mom had a TIA stroke in 2017, and then she knew her mind was not as sharp. Therefore, I think vascular dementia is the diagnosis. 

    I wanted to say caregivers are amazing angels on earth...this is quite difficult and yet it is rewarding. 

    Take care everyone. 

  • Achick
    Achick Member Posts: 2
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    Thank you for your reply - I will start a new thread, still kind of stumbling around

  • harshedbuzz
    harshedbuzz Member Posts: 4,479
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    COred wrote:

    Thank you for all the replies and suggestions.  We’ll definitely consider everything you have said!  To answer a couple of questions.  We recognize the house next door is the first step and are fully ready and prepared to move MIL in with us as soon as it’s needed.

    I moved my own dad way more than most folks here would suggest is prudent for a PWD. Hospital-rehab-apartment-hotel-house-MCF within the space of about 2 years. He kind of rolled with it as his decline was faster than most owing to his dual diagnosis, but many people reported that there was a significant reduction in baseline skills with each move. 

     I’m a stay at home mom with all kids in school so I will be around as much as needed.

    You don't mention the age or number of kids, but this is something you want to consider. Many PWD don't do well with kids. As they regress, they often tend to lose empathy and it becomes all about them. Many PWD "compete" for attention, others are annoyed by the noise and activity of children. Sometimes, children in the household become a fixation for delusions and suspicions (you have already stated that she's there with FIL) and will act out. There's a poster here whose MIL has accused her daughters of theft and driven them to leave home while still in high school. Another poster's mom became irritated and spray her preschool grandchild with what was thought to be insecticide. 

    Many PWD will develop sundowning where they become agitated in the late afternoon/evenings which would be the time when you would be getting your kids settled with homework, dinner and family time. Your kids may not be comfortable bringing friends over if your MIL is acting out.


    Even if your MIL is a tractable PWD, she will soon be to the point where she can not be left alone which means you will have to make other arrangements for kids' sporting events, date night and family vacations keeping in mind that finding caregivers who are good, reliable and honest can be a challenge. 

      While FIL is limited physically he is able to observe and report to us when we aren’t there and SIL is doing pretty well with her MS right now and is the person MIL seems to trust the most right now.  This is the start and we will adjust as needed to get/give MIL the care she needs.  We just have to start with getting them all here.  

    We all need to be nimble in managing this disease. You'll need a good Plan B in the event your FIL or SIL can not participate due to death or disability. Stress is terrible for a person with MS, so I would be inclined to make care decisions based on preserving SIL's functioning over MIL.

    I see multiple comments about MIL needing to be in some type of facility (sorry, I’m not sure what to call the umbrella of all the different placement types).  

    Facility is a good generic term.

    While she is exhibiting the behaviors I listed in original post, she also is still taking care of her yard, cleaning her house, cooking meals, hygiene, grocery shops and just all around seems to be “with it” just as often as not (granted none of these are up to par to what she has done in the past and she doesn’t do them as often as she used to).  It’s just a lot of the things we have started seeing seemed to start quickly and start occurring with rapid frequency (seems to be a rapid decline over the last 6 months).  

    Care needs to be at a level appropriate to her worst symptoms not when she's doing "pretty well". It's important to understand that this disease moves in one direction (assuming she doesn't have some treatable condition that mimics dementia) and that the various stages can last for several years. In cleaning out my aunt's house, it was pretty clear there'd been a cognitive shift before her husband died in 2003; she died in 2018. I noted early changes in dad's personality as early as 2005, in cognition by 2008; he also died in 2018.

    One caveat about memory care facilities is that while they generally will allow a resident to "age in place", they expect a certain degree of independence in getting around and self feeding upon admission. So there is a "window" for MCFs that can close.


    Do you really go from doing all these things for yourself and your family to being in some type of assisted living/memory care?

    Of course. This can be especially true for a person with vascular dementia. My aunt had VD and the progression seemed like a series of steps downward after a plateau over time as opposed to my dad's progression with was a steadier slope down.

    I’m sure I’ll have more questions as we continue on the journey.

    I don't mean to be a total downer, there are people who manage to provide care for a PWD in their home- with kids- until the end. Ranchers Wife is doing so right now. And there was a poster Eric (?) who quit his job to be caregiver and SAHP who wrote honestly about their journey. 

    Good luck.

    I agree that getting them closer geographically will make a lot of this easier. 


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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