Mil with AlZ/ Broken Family Dynamic/ No Planning/ Venting

Worried Soul

A few months ago my MIL received an Alzheimer’s diagnosis.  She had been forgetful and exhibiting symptoms of the disease YEARS prior.  When this journey began, my husband had several conversations with his step-father asking that he seek out medical attention/guidance from a facility with dementia expertise.  This didn’t happen until earlier this year, when testing was completed and a diagnosis was provided.  Once the diagnosis was received, my FIL started guiding my MIL to say to all who inquired, “We’ve done everything that we can.”

I can explain; you see this broken, piecemeal family is reactive (at best) without a proactive bone or an assertive muscle in their bodies.  And here we are today.  

I’ve sent my FIL links to the alz.org website that provides a plethora of fantastic information and resources for the diagnosed, the caretakers and families.  I never received a response.  NOTHING.  Instead, denial of the situation seems to be the charted, desired course.

My husband and I have been staying with his mother and step-father now for over a month. My FIL is in very, very poor health himself.  With his health being so compromised and his wife’s Alzheimer’s, we are one medical catastrophe away from absolute chaos.  (We don’t know if there is a designated POA, or if any of that paperwork is in existence or has been completed. It’s all a mystery with the zero communication from the responsible party.)

MY MIL does not know that she has Alzheimer’s.  She just believes she has dementia.  A few weeks ago, she asked her husband if she had Alzheimer’s – he wouldn’t answer her.  She asked again with more fear in her voice and he still wouldn’t answer.  Thankfully, my MIL quickly forgot her line of questioning.  This is how my FIL has elected to proceed.  Perhaps it’s better for my MIL not to know, perhaps it would be better for her to know.  Nothing is clear and I’m sure each family moves forward with how they see fit.  I dislike the dishonest aspect of it all.  

While being here with them, we’ve done our best to help facilitate a meaningful, happy, safe environment for my husband’s mother.  We’ve been able to get her doing various puzzles, listening to music, singing, and participating in physical activity.  I’m not an expert, but I can tell you it didn’t take much to meet my MIL on her journey; just a little time, concern, and care.  When we got here, she would sit on the couch most of the day, in silence, waiting for her next meal.  

In reading several posts on this forum, I’m acutely aware that this disease will progress and my MIL’s needs will increase, greatly.  Not planning for these upcoming changes or being willing to discuss them with family members seems shortsighted, bone-headed, and foolish. 

If I had to guess, I would say that my MIL is now approaching, if not in, the moderate stage of this HORRIBLE disease.  She is experiencing word loss, asking the same questions within the same minute, and recalling the same stories several times within the same hour.  Her attention span has dwindled. She’s burping and having relentless bouts of hiccups (I don’t know if this is part of the disease, but she didn’t do this before); I’m concerned that this may be a foreshadowing of future swallowing issues.  Body temperature regulation seems hard for her; she’s more sensitive to temperature changes, rendering multiple outfit changes throughout the day.  She’s very sensitive to noises.  She’s started to pick at skin blemishes rendering them infected.  She’s taking a nap everyday.  Walking isn’t a significant problem at the moment, but I’ve observed moments where she appears a bit unsteady on her feet.  Some of the less pleasant personality traits she has have started to come out.  There are moments where she obsesses over people or things.  She doesn’t seem to sleep very long during the night.

My husband and I currently do not reside near my MIL & FIL.  We’ve been trying to decide if we should move closer to help provide caregiving assistance, or remain out of state since it appears that we’ve been somewhat sidelined and our suggestions often blatantly ignored.  My MIL tells us that she wants us here with her “forever” as she “feels more comfortable” (to my FIL’s dismay).  Perhaps this is the disease talking, perhaps it’s her, perhaps it's fear.  

A week ago, I had my first solo caregiving experience and it was very hard and offered little sleep.  The lack of communication, dishonestly and disjointed family dynamic is nearly too much. The lack of proactive planning, highly frustrating.  I’m angry and feel guilty because I have a desire to walk away from this all.  I’m only hanging in here at this point to support my husband.  Maybe I’m a terrible DIL.  This is miserable.

Any suggestions and/or feedback are appreciated.  Thank you for listening.  

**UPDATE**

My DH and I had to walk away from this situation for about a month to re-evaluate the situation without being directly in the heat of it all.  Upon our return, my FIL has mentioned that we all need to sit down and talk.  This is a small step forward.  Unfortunately, this hasn't rendered a meeting yet.  I've been encouraging my FIL to go out for a meal with my DH and BIL to start planning for what they can (at this late stage of the game).  I think these discussions should now be kept respectfully and quietly away from my MIL.  (Thank you for your perspective on this HarshedBuzz.  I appreciate you and your candid responses!)  I've offered to stay back with my MIL to help facilitate the meeting between my FIL, DH and BIL.  We will see where this goes.  Maybe, just maybe we'll be able to get further information on POA and such.

During the last visit, I tried and tried to implement activities that were suitable for my MIL as when we first arrived, I noticed she just wasn't doing much at all.  I started playing music, exercising with her, working (easier) jigsaw puzzles with her, painting with her - I also downloaded an app on her tablet where she could "color by number" various pictures of her choosing.  (We worked through several color by number pictures together before I left, but I didn't think she would ever get back into that app.  After arriving again and looking at her tablet, I've noticed she's completed near 50 of the color by number pictures!)  In leaving, I was nervous that she would retroactively go back to being stagnant without the help of my FIL.  Thankfully, the efforts made previously have appeared to continue with the unexpected support of my FIL.  I just had to patiently plant and water the seeds.  A small victory within itself.

One day at a time, I suppose.

CatsWithHandsAreTrouble

Hello Worried Soul. Welcome as much as one can be during this season of life. Your family situation sounds very similar to mine and it is tough. And it will only get more so unless help gets involved sooner than later. That's something my family desperately needs but we're all just not quick enough to get to it.

Sleep is very important for everyone involved. My mother used to not sleep very well over night which caused everyone else to not sleep either. We eventually got her on a more strict sleep schedule; wind down time for about half an hour or 15 minutes, and then bed as close to 8 as possible. It's worked for a while. Dreading when the disease progresses more and that won't work anymore. Medicated sleep will come next, which in of its self isn't terrible, it's just another pill to force mom to take.

It's good that you were there for a while to get the whole picture on what's going on with your mil. It sounds like your fil is in way over his head. Definitely try and find a solution for him and start planning. I know it'll be hard. Get a DPOA as soon as possible for your mil before she's unable to make decisions for herself. My dad dragged his butt around and we missed that window, we now have to go the route of conservatorship or guardianship which costs a lot of money that we don't have.

Is your husband an only child or are there any other family members around that are close to his parents? Try and get a family meeting in place to work out what is expected of everyone and how much will be too much and what will happen with mil when that comes.

Good luck. You're not a bad DIL. It's a bad disease.

Cosmic

Wow what a situation.

I can only speak from a 77 yr old guys limited experiance from dealing with this soul robbing disease for almost 10 years.

Sounds like you are a caring, loving step DIL so you are a player but somewhat "benched". My suggestion for you and husband is to get access to your MILs health records or see an attorney about getting access to your MILs health records. It's up to your FIL to sign hospital papers granting you access. Let him know you are concerned about HIS health care and would need access if something horrible would occure to HIM. Sounds like your FIL was/is an "in charge" person and he would be giving up power to do so. Once you have health information and are on the hospitals need to know list it gives you some authority to make health decisions for both. 

It's a step by step process and will take some time and patience.

harshedbuzz

Worried Soul wrote:

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

A few months ago my MIL received an Alzheimer’s diagnosis.  She had been forgetful and exhibiting symptoms of the disease YEARS prior.  When this journey began, my husband had several conversations with his step-father asking that he seek out medical attention/guidance from a facility with dementia expertise.  This didn’t happen until earlier this year, when testing was completed and a diagnosis was provided.  Once the diagnosis was received, my FIL started guiding my MIL to say to all who inquired, “We’ve done everything that we can.”

It is regrettable that your FIL wasn't more proactive in obtaining and evaluation/diagnosis. It is pretty common of spouses to remain a little in denial over dementia symptoms. My own mom fought me on having dad evaluated for the better part of a decade until she almost died with him as her advocate when she became ill. 

I think part of this was confusion about cognitive changes being a normal part of the aging process. I also think her denial was rooted in the horror of contemplating a disease that would rob them both of so much. And lastly, living with dad day-to-day, I think she was a bit like the frog in a warm pot of water about to boil-- she was too close to see the bigger picture I did when visiting a few times a year. 

Specifically related to the bolded- to a very large degree this is correct. Unless your MIL had some sort of extreme vitamin or hormone deficiency left untreated, there is precious little medicine has to offer against dementia. There are a couple of medications that can help a percentage of people in the early and mid-stages function a bit better day-to-day but they do not slow the disease progress in any way and can cause unpleasant side effects for a significant proportion of people who trial them. 

I can explain; you see this broken, piecemeal family is reactive (at best) without a proactive bone or an assertive muscle in their bodies.  And here we are today.  

I am sorry. This, along with it being a "blended family" situation does add a layer of challenge to an already difficult journey. 

I’ve sent my FIL links to the alz.org website that provides a plethora of fantastic information and resources for the diagnosed, the caretakers and families.  I never received a response.  NOTHING.  Instead, denial of the situation seems to be the charted, desired course.

I've seen these. I have shared them with my mother, too. Alas, she needed to process her new normal at her pace and would not be rushed. Plus, my mom was 80-ish at the time and the computer wasn't a tool with which she was comfortable. Later, she was so thick in the hands-on caregiving she didn't have time to read the materials I sent her. Plus, information is all swell and all- but what she really needed was a break and someone looking after her well-being. Supporting the caregiver is often the best way to maximize the quality of care the PWD is getting. 

One thing that did help was talking mom to an IRL Alzheimer's Support Group meeting. There, she listened to and accepted advise from her peers. It was a little frustrating that they were telling her all the same things I was but it was more important I found people she could relate to in this journey. 

My husband and I have been staying with his mother and step-father now for over a month. My FIL is in very, very poor health himself.  With his health being so compromised and his wife’s Alzheimer’s, we are one medical catastrophe away from absolute chaos.  (We don’t know if there is a designated POA, or if any of that paperwork is in existence or has been completed. It’s all a mystery with the zero communication from the responsible party.)

This has to be done. And asap. Not only does your DH (or one of his sibs) need to be the second agent on a POA for mom in case FIL dies, he needs someone to act for him in the event he no longer can as his wife is beyond that kind of decision-making. A good CELA could help sell this idea to your FIL at the appointment which your MIL needn't attend. 

If you are unable to make this happen on this visit, you could be forced with trying to get emergency guardianship if/when FIL dies which is more time consuming and expensive. 

National Elder Law Foundation (nelf.org)

MY MIL does not know that she has Alzheimer’s.  She just believes she has dementia.  A few weeks ago, she asked her husband if she had Alzheimer’s – he wouldn’t answer her.  She asked again with more fear in her voice and he still wouldn’t answer.  Thankfully, my MIL quickly forgot her line of questioning.  This is how my FIL has elected to proceed.  Perhaps it’s better for my MIL not to know, perhaps it would be better for her to know.  Nothing is clear and I’m sure each family moves forward with how they see fit.  I dislike the dishonest aspect of it all.  

It's not about you. 

Most spouses elect not to share their LO's Alzheimer's diagnosis with them. Their reasoning is that the reasoning skills needed to process such a statement are gone by the time a diagnosis is made. Additionally, Alzheimer's is a fatal disease which will rob a person of their independence, memories and eventually their ability to talk, walk, control their bowels and swallow-- why would you remind them of this?

Not telling a PWD they have it is a kindness, not dishonesty even if that is not the intention.

Dementia is an umbrella term: Alzheimer's is a kind of dementia so if a person has Alzheimer's they do have dementia but not necessarily the other way 'round. There comes a point in dementia when the right- correct- appropriate- thing to say or not say is "whatever brings comfort". 

While being here with them, we’ve done our best to help facilitate a meaningful, happy, safe environment for my husband’s mother.  We’ve been able to get her doing various puzzles, listening to music, singing, and participating in physical activity.  I’m not an expert, but I can tell you it didn’t take much to meet my MIL on her journey; just a little time, concern, and care.  When we got here, she would sit on the couch most of the day, in silence, waiting for her next meal.  

That's great that she has responded to your activities for now. It's a pity that her husband struggles to do this for her. Perhaps you could convince him to send her to a day program a few times a week or bring in a companion caregiver so he could have some respite whiel she's more engaged. 

In reading several posts on this forum, I’m acutely aware that this disease will progress and my MIL’s needs will increase, greatly.  Not planning for these upcoming changes or being willing to discuss them with family members seems shortsighted, bone-headed, and foolish. 

It is. But it's only been a few months and he needs to process his new normal to some degree as well. 

Another thought is that perhaps he is showing subtle signs of his own cognitive shift or depressions and lacks the executive function to initiate these discussions. You didn't flesh out your profile with details like ages, etc. But if he's older, this could be a not uncommon scenario. 

If I had to guess, I would say that my MIL is now approaching, if not in, the moderate stage of this HORRIBLE disease.  She is experiencing word loss, asking the same questions within the same minute, and recalling the same stories several times within the same hour.  Her attention span has dwindled. She’s burping and having relentless bouts of hiccups (I don’t know if this is part of the disease, but she didn’t do this before); I’m concerned that this may be a foreshadowing of future swallowing issues.  Body temperature regulation seems hard for her; she’s more sensitive to temperature changes, rendering multiple outfit changes throughout the day.  She’s very sensitive to noises.  She’s started to pick at skin blemishes rendering them infected.  She’s taking a nap everyday.  Walking isn’t a significant problem at the moment, but I’ve observed moments where she appears a bit unsteady on her feet.  Some of the less pleasant personality traits she has have started to come out.  There are moments where she obsesses over people or things.  She doesn’t seem to sleep very long during the night.

She sounds pretty advanced in the disease based on this. This site explains some of the symptoms and behaviors seen at each stage-

Stages of Dementia Dr. Tam Cummings

Medication might help with mood and repetitive thinking. Perhaps you could help FIL find her a geriatric psychiatrist for medication management. 

Swallowing issues do develop in the later stages, but are typically "silent". What happens is that the epiglottis doesn't react quickly enough to keep food, drink or saliva from going into the lungs because the signal from the brain is sluggish or missing. If you do get a warning that this is starting to happen, it'll likely be spluttering on liquids. 

My husband and I currently do not reside near my MIL & FIL.  We’ve been trying to decide if we should move closer to help provide caregiving assistance, or remain out of state since it appears that we’ve been somewhat sidelined and our suggestions often blatantly ignored.  My MIL tells us that she wants us here with her “forever” as she “feels more comfortable” (to my FIL’s dismay).  Perhaps this is the disease talking, perhaps it’s her, perhaps it's fear.  

Do you want to move? Does it make sense to move?

A week ago, I had my first solo caregiving experience and it was very hard and offered little sleep.  The lack of communication, dishonestly and disjointed family dynamic is nearly too much. The lack of proactive planning, highly frustrating.  I’m angry and feel guilty because I have a desire to walk away from this all.  I’m only hanging in here at this point to support my husband.  Maybe I’m a terrible DIL.  This is miserable.

I'd put dementia caregiving in the same category as tending a newborn with colic excepting that it doesn't resolve in 3-4 months. It is difficult whatever the dynamic and especially challenging when people aren't all on the same page. Going into this after years of a less-than-ideal relationship with one's in-laws would be especially hard. 

Any suggestions and/or feedback are appreciated.  Thank you for listening. 

Most importantly, you guys need a shovel-ready Plan B. I would find a CELA and get the POAs done yesterday. If FIL won't play ball, then you need to create a plan that allows you to step in should he die or become incapacitated. To that end, find a CELA and discuss what steps you'd need to establish guardianship on-the-fly. You would also want to decide whether you'd do long-distance caregiving in a facility where she lives now or move her closer to you in a facility or your home. I moved my parents back to where they raised me. Ahead of this when they weren't cooperating, I found a memory center for diagnosis and care and toured MCFs and SNFs so I would know where to go when the other shoes inevitably fell. If you decide to leave her where she is now- either because it's better served in terms of options or because the window for moving her closed because of progression, you would also want to research Geriatric Care Managers to be your eyes and ears on the ground. 

HB

Quilting brings calm

I’m going to guess that your in-laws are elderly, and that you may be retirement age yourself.  I’m basing  that on the fact that you both could just pick up and stay with them for over a month.  You don’t mention a remote work situation.  You mention that your step FIL has ignored the links  you sent him and is in poor heath. 

My step father is in his 80s, several physical conditions, and has never used a computer or smart phone in his life.  He can barely read and write.  He’s had at least two  close relatives in his own family  with dementia - yet denied that same fact to the doctor who asked him about it last month.  My maternal grandmother had  it and now my aunt and my mom do.  My step dad is the King of denial and possibly has it himself.  

I’d stop trying to educate your step FIL about dementia and have your spouse move forward  with attempting to get medical and full POA on both of them- or persuading a local relative to do so.  You can print forms off the internet  for their state.   Follow the instructions.  When you mom has a good day and appears with it enough to know her name  and answer some questions, take her, her ID  a witness to the notary public and have her sign them in the presence of the notary public.  Her bank might have a notary on staff.  Or you could go to a lawyer to get it done,  You could do the same for him if he is willing. My stepdad is not.  He refuses even though he’s not capable of adulting( never has been).  He prefers to make life difficult for me since I refuse to let him hide any more of their remaining money.  Yes.  He followed someone’s advice and moved money to his own name.  Something your step FIL may be advised to do by friend  to keep the money away from your MIL, your spouse or to think he’s hiding it from Medicaid for later.  You will see people who have had to keep the person with dementia from spending it unwisely. This would not be a problem if my step dad knew a thing about paying  bills etc. he objects to using the money he has hidden to pay their bills and now tries to tell me he’s not responsible for the bills  

I would not move if I were you.  You will find that you have zero life if you do, Move them . We moved my parents back to our home state  after my mom had a medical crisis and her condition came to light.  They had been gone about 3 years.  We did this because we had made 3 trips there in 18 months - two in the last month they were there . Long distance caregiving wasn’t an option and they had no family in that state.   It’s been a miserable life since then( Oct 2019), but at least I have my home, my adult offspring,  and my friends.    

My spouse stays out of the family dynamics since the move because of the way my step dad acted during the move ( when that money disappeared and my step dad acted like he wasn’t moving at the last minute) and ever since.  He supports and and is willing to help my mom. My step dad has made it hard to do that.  It sounds like your stepFIL is making it difficult too.  Find out what your husband wants to do about mom, and support him but leave the family interaction to him.  Follow his lead - but don’t get out in front of him.

Worried Soul

Dear CatsWithHandsAreTrouble, 

I was struck immediately by your second sentence,  "Welcome as much as one can be during this season of life."  Thank you for the reminder that this is a season; this isn't forever although at times it sure does feel like it could be.  Thank you for the kind welcome, given the circumstances.

I'm sorry to hear that we are in similar family situations.  This is tough.  If we could only get past the denial stage, start freely communicating and on to planning for what's to come, this process could be better.  Well, as "better" as it could be.

I agree, the sooner help is involved, the better.  Have you had any successes in moving your family forward?  I'm open to any suggestions and interested in what you yourself have experienced.

Sleep sure is important for all involved.  It's a great idea to get a set schedule in place and we are currently doing the same.  You're right, it does seem to work, but I know this isn't going to last long.  If you don't mind me asking, how has medicated sleep worked for your mother, your family?  Did your family have to have her medication adjusted to find the right dose?  Is she hazy during the day from it at all?  My MIL doesn't like "pill time" either, but she still tolerates it for the time being, thankfully.  With your mother's medication, have you had to conceal it?

I'm thankful we were able to be here for a while as well to see how my MIL has progressed.  My FIL is way in over his head.  I've been trying to discuss some of these issues with him and plant "seeds" to help him starting thinking about what is to come.  I have to remind myself that all my husband and I can do is try.  

I'm sorry to hear that you have to go the route of conservatorship/guardianship.  I don't know how much that costs, but I'm guess from what you said, it isn't cheap.  I'm also guessing that it may require some time.

My husband is a child of a blended family of 6.  Three of the children have been ousted, one is indifferent, one has no concept of what lies ahead with his mother and the last one (my husband) is trying to help.  All of the children seemingly have allegiances to the respective parent that raised them, and a lack-luster/indifferent relationship with the parent that didn't raise them.  Two children are from my MIL.  One is ousted, the other my husband, is trying his best to help his mother.

I'd welcome a family meeting in a heartbeat.  We've mentioned it several times, but it doesn't seem to be happening.  Perhaps we'll have to try and schedule it ourselves.  Have you been successful with having a family meeting?  

Good luck to you too!  I'm grateful for your response, feedback and suggestions.  Knowing that you're not out here alone, watching this disease consume a loved-one in the shadows helps.  I can only hope it brings you some solace as well.  Thank you.

Worried Soul

Dear Cosmic, 

It's a situation, alright.  It doesn't matter to me that you're speaking from a 77yo guy's life experience, I'm still grateful for your response and willingness to share.  I'm sorry to hear that you have been dealing with this soul robbing disease for almost 10 years.  

Benched, indeed (at least for the time being).  You have some great suggestions; I've already shared them with my husband.  Hopefully we can make some head-way.  

Thank you again.

CatsWithHandsAreTrouble

Worried, so glad that some of what I said brought you comfort. We have a long and bumpy road to travel with many twists and turns until we reach the end. A little comfort hopefully will go a long way.

So far we haven't had to hide the pills in anything. I've heard people grind theirs up and mix it in food with doctor approval for the ones that resist. We just tell her she's almost done, just one more, bribe with a small piece of candy, or take pretend pills (small candies like m&ms, mike&ikes, Skittles, etc) along with her to see if she'll mimic. Splitting up what we can for morning or evening helped since most was in the morning. Mom now takes two pills and Co Q-10 in the morning, and then four at night. She used to take more vitamins and supplements but the geriatric—doctors who specializes in the aging patient—said to cut them out.

There's a condition, or symptom not sure which, that's called anosognosia which is a fancy term for "can't see the diagnosis." Many PWD have it, they forget they have a bad brain and can't comprehend that they're not okay. It can seem like denial from them and refuse help because they think we're the crazy ones. Just gotta meet them where they are and be calm but firm and redirect when they're going to hurt something. This might come into play with pill taking if it hasn't already.

To help with her sleeping, we first tried melatonin. That.... might not have been the best choice. My dad had a super high dosage that he would give her and that knocked her out for the night but then was super tired the next day. We tried halving it and that was a little better but she was still tired the next day. It was only temporary until we got her on the schedule but it was a rough month to get there. PWD do great with a consistent schedule so we stopped after it became clear her body was on a good schedule. That showed up as her getting cranky after 8:30 and difficult to dress for bed, sometimes resulting in her crying. I suggest getting your MIL's doctor involved if she's having trouble sleeping. I wouldn't advise doing it like we did if you can help it, mind it'll still be trial and error.

As for talking with my family on how to get things done... Yikes, that's tough. Two sisters and I are in a group chat that we constantly update each other on what we're doing with mom and check in to make sure no one is feeling too overwhelmed or needs money or a break since we're the primary caregivers. We have a second group chat with a third sister and we update only important things like illness, or fun things, to keep her included since she's across the country. And yet another sister we just text or email once in a while the good stuff since she's more withdrawn, also lives near the third sister.

Right now we're having a hard time with dad. I've another thread I've made about him, "dad doesn't get it." We're just not always meeting eye-to-eye and it can cause some friction. He'd say one thing and then do the opposite. I like to say conversation is a two-way street, you have to know the laws of the street to travel safely. We don't know his "conversation laws" so to speak. It's hard. I'm trying to give him grace and understanding, to also meet him where he is. This is his wife, his close friend, who is slowly getting worse every day right before his eyes. It's probably scary.

We will have to sit down with him and talk about the future while one sits out to watch mom. It's best, kinder, to not involve a pwd in the discussion if they're too far progressed. The anosognosia I mentioned earlier interferes with any reasonable discussion. You'll have to keep in mind what the pwd wants and what is best, which at times can be difficult to find. 

Hopefully what family is accepting the current reality of your MIL can help with her and FIL. If they're able to help ease the burden on him and if a home aide is introduced or placement happens, you do not have to move closer. There are many here who assist from afar. My parents got lucky that my younger sister and I had moved back in a few years before mom's diagnosis. Our oldest sister lives 15 minutes away so that's also a small blessing.

Sorry this response is a bit long. Hopefully you can glean some useful information and I've not repeated what you already know.  I hope you have good warranty for this road we're traveling, bumps and all.

Worried Soul

Dear harshedbuzz,

Thank you for reading my post and responding with your comments/suggestions. 

It is regrettable that your FIL wasn't more proactive in obtaining and evaluation/diagnosis. It is pretty common of spouses to remain a little in denial over dementia symptoms. My own mom fought me on having dad evaluated for the better part of a decade until she almost died with him as her advocate when she became ill. 

It is regrettable that my FIL wasn't more proactive.  I guess I didn't realize how common it was for spouses to remain in a state of denial over their significant other's dementia symptoms.  I'm learning, and learning quickly.  The last sentence in your first paragraph hit me hard; with all due respect to you and your family, I don't want to fall into a similar situation.  It sounds like you may have been able to straighten out the situation with your mother and father albeit last minute.  

I think part of this was confusion about cognitive changes being a normal part of the aging process. I also think her denial was rooted in the horror of contemplating a disease that would rob them both of so much. And lastly, living with dad day-to-day, I think she was a bit like the frog in a warm pot of water about to boil-- she was too close to see the bigger picture I did when visiting a few times a year. 

Your reflection and thoughts as to why your mother continued on without the diagnosis make sense.  I think you are right; sometimes being directly in a situation can limit our ability to see and/or make sense of what is really occurring.  It sounds as if you may have been able to assist your father and mother from a distance for a short while.  If I may ask, is/was this the case?

I am sorry. This, along with it being a "blended family" situation does add a layer of challenge to an already difficult journey. 

Thank you.  We are certainly feeling the challenges associated with having a parent with Alzheimer's disease along with the dynamics and parental allegiances of a blended family.  

I've seen these. I have shared them with my mother, too. Alas, she needed to process her new normal at her pace and would not be rushed. Plus, my mom was 80-ish at the time and the computer wasn't a tool with which she was comfortable. Later, she was so thick in the hands-on caregiving she didn't have time to read the materials I sent her. Plus, information is all swell and all- but what she really needed was a break and someone looking after her well-being. Supporting the caregiver is often the best way to maximize the quality of care the PWD is getting. 

Thank you for sharing your personal experience.  I can see how supporting my FIL can be the best way to maximize the quality of care my MIL receives.  My FIL has never been one to ask anyone for help; maybe he interprets this as a form of weakness, perhaps it's just him being stubborn.  Even with this health deteriorating, he still won't ask for help!  I know it can be humbling to ask others for assistance, but this seems like a great time to start.  The only way my husband and I have been able to counter this behavior is by doing things that we see need to be done.  Unfortunately,  I'm certain we are missing ways to be supportive of him.  It would help immensely if he was willing to communicate his thoughts and needs with the family.

One thing that did help was talking mom to an IRL Alzheimer's Support Group meeting. There, she listened to and accepted advise from her peers. It was a little frustrating that they were telling her all the same things I was but it was more important I found people she could relate to in this journey. 

This is a great idea.  I've found our local chapter.  I'll look into it.

This has to be done. And asap. Not only does your DH (or one of his sibs) need to be the second agent on a POA for mom in case FIL dies, he needs someone to act for him in the event he no longer can as his wife is beyond that kind of decision-making. A good CELA could help sell this idea to your FIL at the appointment which your MIL needn't attend. 

I'm in full agreement with your thoughts.  We haven't looked into obtaining a CELA.  This is a step we need to take immediately.

MY MIL does not know that she has Alzheimer’s.  She just believes she has dementia.  A few weeks ago, she asked her husband if she had Alzheimer’s – he wouldn’t answer her.  She asked again with more fear in her voice and he still wouldn’t answer.  Thankfully, my MIL quickly forgot her line of questioning.  This is how my FIL has elected to proceed.  Perhaps it’s better for my MIL not to know, perhaps it would be better for her to know.  Nothing is clear and I’m sure each family moves forward with how they see fit.  I dislike the dishonest aspect of it all.  

It's not about you. 

It isn't about me, this is about my MIL and helping her to live the best life possible after this terrible diagnosis.  After reading through the alz.org website under the titled page of "Leaving your Legacy" (https://www.alz.org/help-support/i-have-alz/live-well/leaving-your-legacy) I guess I took away a grandiose idea of my MIL perhaps wanting to participate in some of those activities.  I thought that by being honest, this would allow her to move forward in her own way, perhaps somewhat empower her in a situation where she feels powerless.  She was a very independent, strong soul in many ways before the disease began to interfere with her memory.

Most spouses elect not to share their LO's Alzheimer's diagnosis with them. Their reasoning is that the reasoning skills needed to process such a statement are gone by the time a diagnosis is made. Additionally, Alzheimer's is a fatal disease which will rob a person of their independence, memories and eventually their ability to talk, walk, control their bowels and swallow-- why would you remind them of this?

I don't want to remind my MIL of the terrible disease she has; I'm not a cruel or hateful person by nature.  However, I do want her to be treated with dignity and respect during this difficult journey.  

I did observe a case where a woman and her DH (who was diagnosed with Alzheimer's) worked together to increase awareness of this horrifying disease.  Her husband even appeared to help raise funding for Alzheimer's awareness.  Maybe this was a "glorified" case.  

I suppose that in each situation, the primary caregiver makes the difficult decision to share or withhold the diagnosis, determining how they best see fit to move forward with their LO.  I can certainly see how not sharing the diagnosis in some cases may be of benefit.  However, in other cases, I can see how others may want to know and have some control over what this means for them.  In reading your post, I can understand why honesty may not be the best approach at this time.  I think we're beyond this stage now, but I still feel like my FIL may not have my MIL's best interest at heart.

That's great that she has responded to your activities for now. It's a pity that her husband struggles to do this for her. Perhaps you could convince him to send her to a day program a few times a week or bring in a companion caregiver so he could have some respite whiel she's more engaged. 

It is sad that her husband is struggling to do some of these simple activities with her - it's frustrating and makes me question his true, inner-most feelings for her.  Does he not care?  Has he "checked out?"  It's not clear, although I wish it was.  Sending her to a day program is a good idea. 

In reading several posts on this forum, I’m acutely aware that this disease will progress and my MIL’s needs will increase, greatly.  Not planning for these upcoming changes or being willing to discuss them with family members seems shortsighted, bone-headed, and foolish. 

It is. But it's only been a few months and he needs to process his new normal to some degree as well. 

Perhaps I need to extend him more patience as he finds his way.  How long do we wait to see if he makes strides in processing his new normal before we (attempt) to intervene?  

She sounds pretty advanced in the disease based on this. This site explains some of the symptoms and behaviors seen at each stage-

Thank you for sharing the information provided by Dr. Tam Cummings.  Very helpful.

Do you want to move? Does it make sense to move?

Yes, we would like to move. Does it make sense?  The verdict is still out on this.  I feel terrible for saying this, but being sidelined and minimized feeds the desire for distance.  

Most importantly, you guys need a shovel-ready Plan B. I would find a CELA and get the POAs done yesterday. If FIL won't play ball, then you need to create a plan that allows you to step in should he die or become incapacitated. To that end, find a CELA and discuss what steps you'd need to establish guardianship on-the-fly. You would also want to decide whether you'd do long-distance caregiving in a facility where she lives now or move her closer to you in a facility or your home. I moved my parents back to where they raised me. Ahead of this when they weren't cooperating, I found a memory center for diagnosis and care and toured MCFs and SNFs so I would know where to go when the other shoes inevitably fell. If you decide to leave her where she is now- either because it's better served in terms of options or because the window for moving her closed because of progression, you would also want to research Geriatric Care Managers to be your eyes and ears on the ground. 

Thank you for your honest response, feedback and the information you provided.  I appreciate the time you spent on your thoughtful, insightful response.  

Worried Soul

Dear Quilting brings calm, 

Yes, my in-laws are elderly.  My husband and I are not of retirement age.  We took a hiatus from the state in which my MIL & FIL are located for the sake of our mental health as we experienced the unfortunate passing of my parents, my last set of grandparents, my husband's grandfather and our kind neighbor.  It was too much; life started closing in on us.  We are folks who financially save which has bought us this precious time to be with my MIL.  

We recognize that with every day that passes, this is the best day we have left with my MIL/ my husband's mother.  

I'm so sorry to hear that so many of your family members are suffering from this disease.  I can't even begin to fathom your personal family situation.  I can only relate through the suffering that this disease causes all loved ones involved.

I’d stop trying to educate your step FIL about dementia and have your spouse move forward  with attempting to get medical and full POA on both of them- or persuading a local relative to do so.  You can print forms off the internet  for their state.   Follow the instructions.  When you mom has a good day and appears with it enough to know her name  and answer some questions, take her, her ID  a witness to the notary public and have her sign them in the presence of the notary public.  Her bank might have a notary on staff.  Or you could go to a lawyer to get it done,  You could do the same for him if he is willing. My stepdad is not.  He refuses even though he’s not capable of adulting( never has been).  He prefers to make life difficult for me since I refuse to let him hide any more of their remaining money.  Yes.  He followed someone’s advice and moved money to his own name.  Something your step FIL may be advised to do by friend  to keep the money away from your MIL, your spouse or to think he’s hiding it from Medicaid for later.  You will see people who have had to keep the person with dementia from spending it unwisely. This would not be a problem if my step dad knew a thing about paying  bills etc. he objects to using the money he has hidden to pay their bills and now tries to tell me he’s not responsible for the bills  

Thank you for these ideas.  I understand your plight in "working" with a parent who neglects their adult responsibilities.  I think you may be correct about the hiding of funds.  Tending to bills isn't an issue in our current situation.  I can only imagine the frustration you must be feeling with your step-father's antics.  My biggest concern in our situation regarding funds is that they will not be available for my MIL's care as her needs progress.  She earned the money and it needs to be spend on her care and wellbeing.

I would not move if I were you.  You will find that you have zero life if you do, Move them . We moved my parents back to our home state  after my mom had a medical crisis and her condition came to light.  They had been gone about 3 years.  We did this because we had made 3 trips there in 18 months - two in the last month they were there . Long distance caregiving wasn’t an option and they had no family in that state.   It’s been a miserable life since then( Oct 2019), but at least I have my home, my adult offspring,  and my friends.    

Thank you for your honest feedback on moving.  I'm not surprised to hear that you and your family had to make several trips to check on your mother and step-father. The cost of travel, the time away from work, and the inability to provide immediate assistance in a medical emergency had to be hard.  My husband and I came to the same conclusion that if we are caregiving we will need our own home to retreat to and friends for support.  Where we land remains to be determined.

My spouse stays out of the family dynamics since the move because of the way my step dad acted during the move ( when that money disappeared and my step dad acted like he wasn’t moving at the last minute) and ever since.  He supports and and is willing to help my mom. My step dad has made it hard to do that.  It sounds like your stepFIL is making it difficult too.  Find out what your husband wants to do about mom, and support him but leave the family interaction to him.  Follow his lead - but don’t get out in front of him.

Thank you for sharing this experience with me.  I'm grateful you have a supportive spouse, but sad that your FIL does not appear to recognize your husband's efforts to assist.  My FIL is definitely making this hard as well.  My husband has been contemplating the various ways this could all go.  I wish the answers (no matter what they may be) were a little easier for him.  All I can do at this moment is support whatever decision he arrives at, just like your husband is doing for you.  It's good advice to follow his lead!  (I haven't stepped out in front of him yet, and don't intend to.  He even knows I'm on this forum! ) 

Gig Harbor

Since your FIL won’t share with you about wills etc one of you should take them out for a drive and lunch and the other stay behind and search out and photograph all financial papers and will etc that you can find. Try to get a handle on how much money they have so you know if you will need to apply for Medicaid when placement becomes necessary or if they can afford private pay. The more you know about their situation the better advice you will be able to offer. It sounds like snooping but you need to know what is going on.

Quilting brings calm

Worried

Just to clarify - Not all those family members I mentioned were at one time, nor was I involved in caring for them.  My step-dad is the youngest of 14.  My step  grandmother  has been gone 40 years, my grandmother about 20, my step-uncle about 5.  I wasn’t involved in caring for them.  My aunt is taken care of by her children. So I’m just taking care of my mom and step-dad and I don’t live with them.  

This is just a hard situation for everyone,  I read your other comment  describing the family dynamics.  It seems that a lot of us have extra family dysfunction in addition to the dementia … it just makes it so much more stressful 

harshedbuzz

Worried Soul wrote:

I'm learning, and learning quickly.  The last sentence in your first paragraph hit me hard; with all due respect to you and your family, I don't want to fall into a similar situation.  It sounds like you may have been able to straighten out the situation with your mother and father albeit last minute.  

LOL, as my mom would say "do as I say, not as I do". Meaning I would not wish the impact from dad's dementia on anyone. 

There's a lot of family dysfunction here, too. I was never dad's favorite (she died and he climbed into the bottle which caused one of his dementias) and he was justifiably wary of me. I noticed personality changes in 2005, significant memory issues and confabulating by 2008 but wasn't able to affect the process to a diagnosis until he was well into the middle stages in 2015 via a hospital admission for a psychotic episode. 

 It sounds as if you may have been able to assist your father and mother from a distance for a short while.  If I may ask, is/was this the case?

Not really. Dad had burned through most of what little family he had, so it was just me checking in for the better part of a decade. Mom was in her 70s and quite competent around the logistics of running their homes, monthly finances and keeping their lives organized. 

Things were fine-- or so I thought-- until they weren't. She went into an autoimmune liver failure and was transported to the ER by a neighbor while they were at their place in FL. She was admitted and a day later the hospital contacted me as her emergency contact as they realized dad wasn't "with it". I called them daily to check in and in the 2 weeks this was brewing he never mentioned her being sick (or the color of a school bus for that matter). He told me she was at the store or swimming or even divorcing him but not that she was ill.

Nothing replaces your "eyes-on" except possibly a Geriatric Care Manager. 

After his diagnosis and getting all the legal stuff done, the houses sold, moved them and all their stuff (twice because they didn't like the first place) and medical care established with a dozen new practitioners, I did a dive into the investment accounts and discovered that dad had lost $350K day-trading back when mom was blowing off my pleas to have him evaluated. 

I don't want to remind my MIL of the terrible disease she has; I'm not a cruel or hateful person by nature.  However, I do want her to be treated with dignity and respect during this difficult journey.  

I did observe a case where a woman and her DH (who was diagnosed with Alzheimer's) worked together to increase awareness of this horrifying disease.  Her husband even appeared to help raise funding for Alzheimer's awareness.  Maybe this was a "glorified" case. 

That's something of a zebra. Sometimes one hears of a PWD who was identified quite early on who is compelled and capable of sharing their experience. There was a columnist at the Philadelphia Inquirer who wrote for a time about his dementia but that's not typical.   

I suppose that in each situation, the primary caregiver makes the difficult decision to share or withhold the diagnosis, determining how they best see fit to move forward with their LO.  I can certainly see how not sharing the diagnosis in some cases may be of benefit.  However, in other cases, I can see how others may want to know and have some control over what this means for them.  In reading your post, I can understand why honesty may not be the best approach at this time.  I think we're beyond this stage now, but I still feel like my FIL may not have my MIL's best interest at heart. 

It's hard to say. I will say that both of dad's neurologists shared his full diagnosis with him but his situation was unique among PWD in that one of his dementias, Wernicke-Koraskoff's is treatable and even to a degree reversible by maintaining abstinence. I don't think he had the cognition to fully process what he was told-- his executive function was worse than his memory at this point. To him it felt like an insult, sort of his version of the "R" word. The news caused him to cycle between anxiety, depression and anger which made the task of caregiving even more challenging and didn't improve his quality of life in any way.

I suspect the sort of person who wants to make a plan about what they'd want in the eventuality that they can't act for themself has already taken the steps to make their wants known- a conversation about end-of-life care or even an Advance Directive. My DH and I have these. My childless aunt reminds me of her MOLST form details and wishes every month or so. I also suspect that those folks who would prefer not to discuss such issues might not be swayed by a terminal diagnosis. 

Good luck going forward. This is some difficult adulting.

HB

  

Knittingpretty

I am in a situation that is very similar to you and I’m starting to feel like I’m about to have a nervous break down. My mother-in-law is not married but her siblings have a lot more sway over her and the entire family is out to lunch. They will not except that we cannot afford 24 seven care and nobody is able to provide that and yet they are fighting me to the nail just to look into other alternatives and so I have thrown my hands up and just said fine it’s not my problem and I am not helping until I see a proactive plan and proof that you have taken steps to achieve that plan. As a last resort I called adult social services because I know they have a case on her. They told me that she has the absolute right to not want to seek further care and there’s nothing I can do without getting conservatorship or guardianship. My mother-in-law‘s sister has access to all of her health records and I don’t. We cannot afford a lawyer and I don’t think the siblings are going to allow us to use money from my mother-in-law‘s savings towards a lawyer to gain guardianship and conservatorship. I think what will happen is that eventually another big incident will happen but this time she will be injured so badly that the hospital will not release her to anybody but a rehab or care home and she will just have to go to the first one available and then she’s going to decline swiftly and die in some crappy low end care home. And it makes me furious and depressed.