No idea what to do

Fardwarks

My parents moved to another state (10+ hour drive) in 2013.  I believe my mom (nearing 80) began showing early symptoms of dementia around 2017, which I noticed during a visit.  Of course that's all hindsight now.  She stopped cooking and had always been the "cook" in the household, but was always dealing with knee pain that ultimately resulted in a knee replacement, so my dad & I wrote it off as a pain thing.  Then came short term memory issues that began popping up in 2018 (which I again noticed during a visit).  Confusion (downstairs vs. upstairs, etc.), personality shifts & moodiness, etc.  My dad recognized this, but according to him, my mom refused to see or talk to a doctor about anything.  She went as far as refusing to get into the car with him to go anywhere.  My dad is non-confrontational, and really didn't push it, which he disclosed to me when he came down alone for a visit in 2019.  I saw my mom in the summer of 2020 when she came home to visit with some other family members, and while I certainly knew changes were happening with her, she was only here for about three days before returning home with dad.  I didn't see them at all during 2021, and am planning a visit soon based on new information.

My mom was only recently diagnosed with Alzheimer's (January 2022), but my dad has provided me with little information.  I speak to both of them regularly on the phone, but my dad can't answer questions like what stage the doctors believe she might be in, what medications she is on, etc.  I'm unsure if that's because he isn't asking, he doesn't remember, or if he doesn't want to pass the info along.  My dad has generally communicated that she is doing well, with good/bad days of course.  But over the past month, he indicated that things had "accelerated" (his words).  Hallucinations, sleep disruption, and one wandering episode. 

Then last week, my dad (who is now 81) called me to tell me that he thought mom needed to go into a nursing home.  This felt like it came out of nowhere.  I asked questions like how he would take her there, what facility he was thinking about, etc.  But at that point, he didn't have many answer and just said that he was looking into options.  Then 24 hours ago he told me that he is taking her to a combination nursing/assisted living facility on Monday.  He has not told my mom and doesn't intend to.  I ask questions like what has prompted this, is this a memory care facility, what is the plan if there is a major incident, etc.  He has no answers.  My mom is coherent and engaged when I speak to her on the phone.  She knows who I am.  She answers my questions.  While there is confusion on her end, and I am clearly not there everyday to see what is happening as far as what dad may be dealing with, this seems like a very fast decision on his part.  I'm unsure if he's intentionally not telling me about some major episodes, or if her decline is really this drastic, or if he's just tired.  Or maybe it's all of the above.  My dad isn't necessarily the best communicator and I tend to struggle in that department as well. 

When I ask for specifics about her behavior, all my dad can say is that she "won't listen to him" or "take his advice/suggestions."  But he won't/can't give me any more information.  I am their only child.  My half-sister "D" (mom's daughter by first marriage) passed away unexpectedly years ago.  "D" had several children (my nieces/nephews), but I am only recently again in contact with one niece "C" (who has dealt with some personal issues I'll keep private).  There are only a few other family members on my mom's side that I could contact, and most of them haven't seen her in years either.  I don't know where to start or what to do.  My maternal grandmother also had Alzheimer's, but I was very young at the time of her diagnosis & subsequent decline and do not remember very much about her progression.  And even if I did, that doesn't mean that my mom's progression would be the same.

I do not want to disregard what my dad may be dealing with, but feel like this is a huge leap into a nursing/assisted living situation.  Even if I jumped on a plane tomorrow (which isn't doable due to work right now), I don't know that I can stop anything from happening.  Or even if I should. 

Any ideas on where to start?  What to do?  I'm completely lost.

mommyandme (m&m)

Welcome to the forum, I’m so sorry that you find yourself here and for your struggles.  There are so many wise and caring people here to offer suggestions and support.  I personally haven’t dealt with the parents situation as my mom is single so I can’t offer much when dealing with spousal caregivers.  I did connect with something you said about your dad not wanting to discuss much with you.  For me, sometimes when someone asks about what’s going on with mom etc… it’s the last thing I want to discuss because I’ve been living it all day and really need a break from it, even just talking about it.  Not sure if that’s a fit or not.  Also I’ve heard that spousal caregivers sometimes hide the reality of what they’re dealing with. 

I’m sure you’ll receive better replies pertaining to your current situation, keep coming back.  Thanks for sharing too.  

terei

Your father clearly thinks your mother needs 24/7 attention which he can no longer provide.  Believe me, to him, this is not ‘out of the blue’.  He is absolutely doing the right thing in not discussing this with your mother.    There comes  time when dementia patients should no longer be asked for input on decisions, even if they affect them because they cannot provide rational responses.  This is also not your decision to make.

When you are able, you should visit her at the facility he has chosen + see what her status is.  Until that point, you really have to no choice but to accept what your father is doing.  I do not think you can legitimately interfere unless you have face to face caregiving experience with her. 

There are so many things that could be going on that he may not want to discuss(incontinence, resistance to bathing, wandering, aggression…..who knows.)

After she is at the facility, you may be able to discuss your mother’s health status + behavior with the staff + get more information if your dad is amenable to that.   Keep in mind that if the placement does not work out….for what ever reason, she can certainly be moved in the future. It is not something that cannot be changed

As a warning, your mother may try to enlist you to try to remove her from the facility, which would be very common at least initially.   IMO the best thing for you to reply is that your father + ‘the doctor’ thinks she shout be there for treatment ‘til she is better’.    I think you have to accept what is happening + just see what comes next.

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ButterflyWings

Hi Fardwarks - 

Very sorry for what has  brought you here. Dementia is a terrible, one-way ride to you know where. I’m glad you reached out here rather than continue feeling that your dad is possibly doing something wrong and that you need to “do something”. I can understand your sadness and shock. We who have PWD LOs understand all to well. 

Respectfully, you noticed signs as early as 2017. A LOT happens in 5 years as dementia progresses. This is not exactly happening out of the blue, as you mentioned feeling. 

What to do?  

1. Learn as much as possible about what your parents have likely been struggling with. As a spouse caregiver myself, it sounds like your dad has been handling things largely by himself? Heavy lifting that takes people decades younger, down the tubes. 
2. Support his decisions. He seems to be making a caring decision to get her the appropriate level of care for her safety and his own. That is hugely insightful, responsible, and selfless. AL/MC placement is a gut wrenching decision for primary caregiver spouses who finally identify that option as the best next step. You can see their heartache and despair if you read posts on these boards (please do!) Most simply cannot go any further.
3. Do visit mom at her new home once dad and her care team say it is good to start visits. 
4. You have one sane and functioning parent right now. Dementia often wears the caregiver down so much they/we neglect our own needs an health. You don’t want to lose both of them. He has been surviving the loss of his spouse daily for years. He needs your support or at least not pushback. That will help your DM more than you know. 

Here are some excellent articles that may answer some of your questions and hopefully lessen the shock and pain. 24/7 caregiving does not leave much time for me to update folks as to my DH’s condition if they aren’t really involved or proactive. It’s just more hectic than anyone can imagine if they haven’t done it themselves. 

Since you observed signs yourself periodically. you can be assured that was just the tip of the iceberg. Many of our LOs “showtime” (I think all of us humans do actually) - and put the absolute best foot forward for visitors, Drs, even strangers. If he says it’s time, trust him. It’s probably past time. 

Wishing you and your family well with this journey none of us wants to be on. Glad you found our group of many who have been, or are now right where you and your dad are. 

  http://www.dementiacarestrategies.com/12_pt_Understanding_the_Dementia_Experience.pdf

M1

I'll add my welcome.  First thought that occurs to me is to wonder whether you dad is dealing with his own decline:  this will really be something for you to watch for when you do go.  Hopefully he is making decisions with a full deck, but you always have to be on the watch for that.  You need to find out whether he has power of attorney for her, and who has it for him:  you may need to have it for both parents eventually if not already.  

Good luck...this is very difficult under any circumstances and sorry you find yourself in this position.

jmlarue

You've received some very good, very compassionate advice here. I would only add that you need to bow to your father's decision to place your mom in a care facility. There is no way you can understand, even if told in gory detail, the difficulty your father has faced caring for a person with dementia - particularly over these past few years where he has had to shoulder the entire burden alone and isolated by the Covid pandemic. Even for those who had the financial wherewithal to hire part-time caregivers or housekeepers to assist - there were none to hire. Support groups shut down completely or turned to holding Zoom meetings. For a lot of seniors, the lack of online technology skills meant there was no where to turn for advice. A lot of us were forced to ignore our own health care needs during 2020 & 2021. Forget about the possibility of going through all the in-person visits and diagnostics to get a dementia diagnosis or professional advice on handling the myriad changes in their LO's behavior or abilities. There was just no way to make that happen. I'm sure you faced some issues like that, too, but you were lucky to have youth on your side to soldier through. You may still see your father as the strong, silent type who can handle whatever is thrown his way. Believe me - at 81 his energy and endurance for the hard work of caring for a PWD is in increasingly short supply.

If you want to ride to the rescue, do that for your father. Let him know, in no uncertain terms, that you will support his decisions on your mom's continuing care. Please try to remember that he loved her first and loves her still. Losing her to this disease is much harder on him than you can possibly imagine.

harshedbuzz

Fardwarks wrote:

Hi and welcome. I am sorry for your reason to be here, but glad you found us.

This is a lot for you to take in. Being the only surviving adult child of parents who moved away is my story, too. I was fortunate that dad passed well before the pandemic, so I was able to visit my folks several times a year before they needed to move closer in order for me to take a more active role in supporting my mom as dad's caregiver. 

My parents moved to another state (10+ hour drive) in 2013.  I believe my mom (nearing 80) began showing early symptoms of dementia around 2017, which I noticed during a visit. 

By the time family members notice symptoms consistent with dementia, it's usually the case that the PWD is already in stage 3 (early mid-stage). 

Stages of Dementia Dr. Tam Cummings

Of course that's all hindsight now.  She stopped cooking and had always been the "cook" in the household, but was always dealing with knee pain that ultimately resulted in a knee replacement, so my dad & I wrote it off as a pain thing. 

It's so easy to write off the early changes with excuses. My mom did this with my dad for so long that he was diagnosed until well into the middle stages and dipping his toe into stage 5.

Then came short term memory issues that began popping up in 2018 (which I again noticed during a visit).  Confusion (downstairs vs. upstairs, etc.), personality shifts & moodiness, etc.  My dad recognized this, but according to him, my mom refused to see or talk to a doctor about anything.  She went as far as refusing to get into the car with him to go anywhere.  My dad is non-confrontational, and really didn't push it, which he disclosed to me when he came down alone for a visit in 2019. 

Your mother sounds rather difficult in terms of how dementia presents in her. My dad had always been challenging and dementia only seemed to distill his edginess into something a bit more intense. 

 I saw my mom in the summer of 2020 when she came home to visit with some other family members, and while I certainly knew changes were happening with her, she was only here for about three days before returning home with dad.  I didn't see them at all during 2021, and am planning a visit soon based on new information.

It's really hard to get a sense of how a PWD is functioning unless you spend some real time observing them. In the early and early-mid stages, many PWD have the ability to hold it together for periods of times which can fool those who don't see them 24/7 into thinking they're a whole lot more capable than they are. In many respects I was fortunate because when I visited my parents whether at the beach or in FL during the winter I stayed with them and got a good look at how dad's mood and abilities waxed and waned through the day. I have a dear friend whose mom lived around the corner. She saw her mom daily for a few hours and was gobsmacked by mom's behavior overnight when they decided to move her in. 

My mom was only recently diagnosed with Alzheimer's (January 2022), but my dad has provided me with little information. 

It's great that dad was able to finally get her diagnosed and rule out other treatable conditions that can mimic dementia. While it's tempting to think of this as a "new" condition, it sounds from your post that she's likely had Alzheimer's since before 2017- so at least 5 years during which time there would be a progression of brain disease and escalating symptoms. 

I speak to both of them regularly on the phone, but my dad can't answer questions like what stage the doctors believe she might be in, what medications she is on, etc.  I'm unsure if that's because he isn't asking, he doesn't remember, or if he doesn't want to pass the info along. 

It's hard to say. It could be her neurologist doesn't talk stages so much. Dad's neurologists used a 3 stage model as many physicians do. The bottom lone, though, is that your dad probably has a better sense of where she is in this journey from living with her than any specialist. 

If I had to guess, your dad isn't filling you in on details either because discussing your mom's condition/behavior distresses her or because he's trying to protect you from the uglier details. My mom tried for weeks to deny that dad had become incontinent until I walked in on her cleaning up after he'd managed to foul the hall floor and walls. She claimed she was protecting his dignity. 

My dad has generally communicated that she is doing well, with good/bad days of course.  But over the past month, he indicated that things had "accelerated" (his words).  Hallucinations, sleep disruption, and one wandering episode. 

Wandering, sleep disruption and incontinence are the placement trinity. Once one of these is an issue, it can be more than any one person can manage as a caregiver. I think you need to be realistic about the physical capabilities of your dad serving as a 81 year old home health aide for an uncooperative client 24/7. You certainly wouldn't hire someone off the street his age for this gig. 

Then last week, my dad (who is now 81) called me to tell me that he thought mom needed to go into a nursing home.  This felt like it came out of nowhere. 

I can imagine you feel broadsided by this, but in fairness to you haven't seen your mom in 2 years. Many people who have been unable to visit families in the pandemic are struggling with the reality that their LO has progressed in their absence. 

I asked questions like how he would take her there, what facility he was thinking about, etc.  But at that point, he didn't have many answer and just said that he was looking into options.  Then 24 hours ago he told me that he is taking her to a combination nursing/assisted living facility on Monday.  He has not told my mom and doesn't intend to.  I ask questions like what has prompted this, is this a memory care facility, what is the plan if there is a major incident, etc.  He has no answers. 

Let me just say that the last thing any caregiver needs is someone playing devil's advocate from 1000 miles away. 

 My mom is coherent and engaged when I speak to her on the phone.  She knows who I am.  She answers my questions. 

I used to call my parents daily to check in. Six months before dad was finally diagnosed there was a period of time when I'd call my mother and my dad would pick up to tell me mom was at Publix, napping or swimming with friends and we'd have a chatty conversation about his plans for the day. Imagine my surprise when the next day the local hospital called me as an emergency contact that my mom had been admitted 2 days before with autoimmune liver failure. The woman was the color of a school bus and he was oblivious. If you don't have boots on the ground, you need to defer to the person who does. 

 While there is confusion on her end, and I am clearly not there everyday to see what is happening as far as what dad may be dealing with, this seems like a very fast decision on his part.  I'm unsure if he's intentionally not telling me about some major episodes, or if her decline is really this drastic, or if he's just tired.  Or maybe it's all of the above.  My dad isn't necessarily the best communicator and I tend to struggle in that department as well. 

It doesn't really matter. If he can no longer do this, it's his choice to delegate her hands-on care to professionals and go back to being her husband. 

When I ask for specifics about her behavior, all my dad can say is that she "won't listen to him" or "take his advice/suggestions." 

I was fortunate that by the time we got to the point where dad was completely uncooperative, they were local to me so I could see the dynamic with my own eyes because there is no way mom could discuss dad's behavior with him in the house. He had anosognosia and thought he was just dandy-- if he heard mom telling me about soiling or hallucinations or refusing showers he'd have taken out on her. 

 But he won't/can't give me any more information. 

It doesn't matter. Perhaps it just feels really disloyal to discuss this with you. Perhaps he'd rather you remember a different version of your mom.

I am their only child.  My half-sister "D" (mom's daughter by first marriage) passed away unexpectedly years ago.  "D" had several children (my nieces/nephews), but I am only recently again in contact with one niece "C" (who has dealt with some personal issues I'll keep private).  There are only a few other family members on my mom's side that I could contact, and most of them haven't seen her in years either. 

I'm unsure why you'd need to contact folks except maybe to see your mom while she might remember them. It would have been great if family could have supported your dad as a caregiver by offering him some respite; but with COVID maybe that wasn't safe. 

I don't know where to start or what to do.  My maternal grandmother also had Alzheimer's, but I was very young at the time of her diagnosis & subsequent decline and do not remember very much about her progression.  And even if I did, that doesn't mean that my mom's progression would be the same.

Alzheimer's is a terminal diagnosis. While the progression rate can be variable and not every PWD will exhibit exactly the same symptoms in the same order, no one survives it.  

I do not want to disregard what my dad may be dealing with, but feel like this is a huge leap into a nursing/assisted living situation.  Even if I jumped on a plane tomorrow (which isn't doable due to work right now), I don't know that I can stop anything from happening.  Or even if I should. 

You probably shouldn't. It sounds as if your dad is the sort who plays his cards close to his chest. He's likely thought this through and made prudent decisions. 

Any ideas on where to start?  What to do?  I'm completely lost.

You need a Plan B to take over in case your dad is the 1 in 3 who does not outlive their PWD. When you visit, this is a conversation to have with your dad.

Again. I am so sorry you are dealing with all of this.

HB

Quilting brings calm

My parents moved away in 2016.  Mom seemed off in 2018.  Mom and Stepdad called and we made an emergency trip there- 12 hours if you didn’t stop,   That issue was explained.  First possible medication issue, then mini-stroke.  Spring of 2019 she seemed overwhelmed by life. They moved from an RV to independent living in Sept 2019.   Second emergency trip down there.  Doctors said delirium.  My sister went after I went back home ( I was still working).   Doctors just shrugged their shoulders as mom got worse and worse).  They refused to believe she had a UTI.  Didn’t offer any help.  We had to ask for home health orders. She wandered out of the independent living apartment  to a strangers door a couple weeks later.  Seemed like a stage 6( see link below). Third emergency trip.  We moved them back to our home state Oct 2019. Got  the urosepsis treated, she’s been about a stage 4 ever since. They’ve also lived in assisted living ever since too. 

Mom is now 84/step/dad is 82.   There is no way that he could take care of her if they did not live in assisted living.  He couldn’t in the  independent living apartment which was really just an over 55 complex work a clubhouse.  My mom doesn’t suffer from hallucinations, wandering and know who I am and can carry on a conversation.  Of course it’s the same conversation 5 times in 5 minutes and she wouldn’t have a  clue how to cook or pay bills.  

Your dad is probably exhausted.  Here is a link to a narrative stage description 

 https://www.alzinfo.org/understand-alzheimers/clinical-stages-of-alzheimers/

Fardwarks

M&M - Thanks for your perspective.  I think my dad is likely struggling with how to share what he sees/deals with on a daily basis.  And I'm sure it's the last thing he wants to talk about with me.

Terei - I suppose that it feels very wrong to me to not tell someone, but based on information I've been reading (that others have provided), I guess that is the right call.  Especially considering the fact that she refused to get into the car to go with my dad to a scheduled doctor's appointment back in 2019, once she knew their destination was the doctor.  I am worried that when we get there in a few weeks that she will be upset with me & will likely try to convince me to help her. 

Victoria2020 - Dad & I will definitely need to talk about things in more detail when we get there for a visit.  Luckily I'm fairly confident in his financial position at the moment as he's always been frugal & a smart planner.  And I often help him compile some of his financial information online since he's not especially computer savvy, so I have some awareness of his investments and savings.  I'm sure you're right that what I'm hearing on the phone from my mom is deceptive.

ButterflyWings - thanks so much for the link to the information, it's been very helpful

M1 - So far I think my dad is in good shape.  He's always been a bit forgetful, so forgetting details/dates is not terribly unusual for him.  He's also never been big on sharing his thoughts/feelings, and I'm not picking up on any signs from him like I did with my mom. Although I clearly didn't take her earliest signs seriously enough, or even recognize them for what they were.

jmlarue - The complications of the pandemic certainly didn't make it easy for my dad to get my mom to appointments/diagnostic assessments, so that has definitely been a frustration. 

harshedbuzz - I think anosognosia is probably a factor here too, and dad typically refuses to talk to me about her when she's in the room because he doesn't want to upset her or otherwise set her off.  Again, he's very much a non-confrontational person and I'm sure he doesn't want to deal with it.

 Quilting brings calm - thanks for the info on stages