Living with someone who has Alzheimer's - anyone else? (1 Viewer)

My MIL has lived with us (wife, three kids) for 18 years, since my oldest was three. On balance its worked out great. Her memory started to noticeably fade around a year ago, and over the last six months the pace has accelerated a ton. To live with someone who's going down this road can be heartbreaking, frustrating, oddly fascinating, maddening or funny as hell from one minute to the next, depending on what she's up to and the stress level in the house at the time. A ton of laughs actually, and I think its been good for my kids to witness/help manage it all.

It ain't getting better though, and I'm curious who else is or has gone through this and at what point you said "no mas" and had to send them off to live elsewhere.

Nigel said:

My MIL has lived with us (wife, three kids) for 18 years, since my oldest was three. On balance its worked out great. Her memory started to noticeably fade around a year ago, and over the last six months the pace has accelerated a ton. To live with someone who's going down this road can be heartbreaking, frustrating, oddly fascinating, maddening or funny as hell from one minute to the next, depending on what she's up to and the stress level in the house at the time. A ton of laughs actually, and I think its been good for my kids to witness/help manage it all.

It ain't getting better though, and I'm curious who else is or has gone through this and at what point you said "no mas" and had to send them off to live elsewhere.

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T&P GB

What would you like to know?

My FiL we eventually put into a home but he had other issues.

My wife's grandmother was at home where my MiL cared for her until the end.  We made her get a nurse because she was "killing" herself taking care of her mother 24/7

It's a tough sled

Nigel, out of curiosity, was there an original health issue that caused her to come live with you guys or just how life turned out?

We've got a full time health aide come in from 8:30 - 5:00 Mon - Fri, my wife and I both work and she can't be left alone. My kids are around after the aide leaves to cover the gap until we get home.  I typically get home first most days and for the last two months her thing is standing in the kitchen doorway looking outside, coat on, waiting for her "ride home from work".  She thinks when the aide leaves that she should leave too ('why does she always get to leave before I do?!?!") The next 30 minutes is spent convincing her that she lives right where she is. Sometimes she's so insistent on leaving, to the point you have to physically stop her from "walking home", that someone (usually make my son do it!) has to take her for a ride in the car so she can "show us where she lives". A few minutes in the car, they come back, and...she's home.

AAABatteries said:

Nigel, out of curiosity, was there an original health issue that caused her to come live with you guys or just how life turned out?

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FIL died suddenly in 2002, they lived in the same town as us and the house was too big and not set up well for an old person. She sold the house, we built a space onto our house for her, and she's been with us since. She was healthy and able-bodied for years, cooked for us a ton, did laundry (still does) and was very helpful with kids. Great arrangement for a long stretch.

My dad had dementia and some Alzheimers. My father in law has dementia but no signs of Alzheimers yet.
It's tough for both the patient and those that take care of them. It takes a lot of patience and gentleness because it's frustrating for everyone involved. 

Like you, we hired a helper that lived with my mom and dad 6 days a week. But we were pretty close to sending him to a special home several times.

Nigel said:

We've got a full time health aide come in from 8:30 - 5:00 Mon - Fri, my wife and I both work and she can't be left alone. My kids are around after the aide leaves to cover the gap until we get home.  I typically get home first most days and for the last two months her thing is standing in the kitchen doorway looking outside, coat on, waiting for her "ride home from work".  She thinks when the aide leaves that she should leave too ('why does she always get to leave before I do?!?!") The next 30 minutes is spent convincing her that she lives right where she is. Sometimes she's so insistent on leaving, to the point you have to physically stop her from "walking home", that someone (usually make my son do it!) has to take her for a ride in the car so she can "show us where she lives". A few minutes in the car, they come back, and...she's home.

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I don't mean to be a downer but it will get real bad eventually....

I mean can't walk, can't feed themselves, can't communicate, can't clean themselves bad.

If you can still "put up" with the current condition, I would until you can't.  If that makes any sense.

The first time I went to see my FiL and he had no idea who I was , was a gut punch.

Peace be with you 

It's an awful disease especially when the round trips to the hospital, snf and assisted living become frequent. My bff mother has it. I've been with them through it all. I'd  say the toughest part besides putting her in assisted living is the times she doesn't look so bad. She knows she's not home. She always has since July 2016 when she left her home.

It's a disease with ups and downs. Last Oct we were all summoned to her bedside to say bye. Hospice said no more than 2 weeks left. She made it. Then it became Thanksgiving, Christmas. Not only did she live but once bedridden now she could sit in a wheelchair and go to the dining room for dinner. No more pureed food. And she fed herself. Not long after that she could rise from the chair and slowly go to the bathroom close by without a walker and go all by herself. Even washed her hands! She went from hallucinating and being confused much of the time to no more hallucinations and lucid more often. Docs are stunned. She came off hospice. One thing we noted is once some medications were lowered or stopped she was doing better.

She's 93, dxd in 2015. Her druggie son has always lived with her and my bff moved in Jan 2016 to help. She was just falling too much. She wore a diaper at night but with dementia she thought she could get out of bed to go to the bathroom and wind up on the floor. She's also not a nice person to my bff and is irrationally blamed for everything bad. That's where I'd get called over since she loves me and her daughter is mean and evil. But we couldn't keep picking her off the floor. Bathing her on a chair in the tub was very difficult because she's not a baby and can do it. We spent time before it was getting too impossible to find an assisted living that was clean with a caring staff. Found one close to us across the street from her docs and hospital. It was kicking and screaming. She tried to escape. One time they found her in the street hoping to get run down. It's only now that she doesn't have much strength that she can't get past her doorway. 

The moods swing. She's nice to me all the time and attacks her daughter much less if I'm there. Once in awhile she like her. But since she always loves to see me I am called when things are bad.

I'd suggest have a place in mind. Some places have waiting lists. Who does she seem to be closest too. Have that person available for the bad days. It kind of comes on suddenly. You've been doing it 24/7 and all of the sudden it's I can't,  at least in this situation. Unless you hire 24/7 care which is costly assisted living it is. It was considered for 5 minutes, not just the cost but the stress of seeing her demise.

For awhile we went to visit daily. Eventually she liked the staff and even made some friends. Yay! It was a good decision because social interaction, doing activities with non family members stimulates the brain. Plus they get home care which includes PT. We hear get me out of here much less because staff is very kind and caring. So now we visit less because she's ok and for our own mental health.

It's a tough decision. I'd go as long as you can and she is also safe and otherwise doing ok like eating ok. Make sure the assisted living has a memory care unit. That way she can stay put when things get bad. When the mother becomes combative she eats in their dining room. They try to not keep her in her room all the time. They need interaction with people. I'd also get the power of attorney in place, advanced directive, polst, etc if you haven't yet. Some folks go down fast while others can linger for years.

Best wishes. Xx

CurlyNight said:

She's nice to me all the time and attacks her daughter much less if I'm there. Once in awhile she like her. But since she always loves to see me I am called when things are bad.

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It's so sad that even with Alzheimers, she treats her daughter like crap. :(

[scooter] said:

It's so sad that even with Alzheimers, she treats her daughter like crap. :(

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They say the personality that the person has becomes enhanced. She never was nice to her daughter. No one knows why. I don't know if I could help her like she does if my mom was mean to me. She's been told go to hell, you are the devil, no one loves you much of her life. Unfortunately that's not part of her memory loss. The mood swings are brutal. She'll be ok then next minute bawling. It's for sure tough. Those who manage to keep the loved one home till the end I admire. Seeing this is even hard for me and she's not my mom. As the person progresses, people near him/her needs to evaluate pros cons of staying put at home. Imo having social interaction with others not just family members and aides is important. Safety is very important. Can the aide or you all be able to pick the person up when they fall. Their mother fell and badly bruised her head. No broken bones but it could happen in the elderly even if healthy. Much to evaluate when changes happen. Their mother's case is very uncommon, going from bedridden 2 weeks to live with all the signs there to actually getting better. As with many non curable diseases it's hope for the best, prepare for the worst.

My MIL gets uncharacteristically ornery sometimes, and it usually hard to take seriously - we literally just laugh at her, in a respectful way. She has gone over-the-top nasty a few times with my wife though ('I hate you"..."you've always been rotten to me"..."you're stealing from me") where I know its stung.

BTW, I'm home alone right now for the first time in forever. My wife left today on work trip to New Zealand, gone for 8 nights. Her siblings, who I haven't mentioned and have recently become helpful, are helping out while my wife is gone. In general they've been taking her at least one of the weekend nights and sometimes both. One of them has her tonight, picked her up at 7 which was the perfect remedy for the daily "waiting for a ride home from work" routine...."you're ride's here...adios!"

Nigel said:

My MIL gets uncharacteristically ornery sometimes, and it usually hard to take seriously - we literally just laugh at her, in a respectful way. She has gone over-the-top nasty a few times with my wife though ('I hate you"..."you've always been rotten to me"..."you're stealing from me") where I know its stung.

BTW, I'm home alone right now for the first time in forever. My wife left today on work trip to New Zealand, gone for 8 nights. Her siblings, who I haven't mentioned and have recently become helpful, are helping out while my wife is gone. In general they've been taking her at least one of the weekend nights and sometimes both. One of them has her tonight, picked her up at 7 which was the perfect remedy for the daily "waiting for a ride home from work" routine...."you're ride's here...adios!"

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Yeah, they get frustrated with their inabilities and lash out. When my friend's mother was eating in the dementia unit, we were always entertained. 2 people who are checked out are arguing about their delusions. Totally made no sense but not to them. Mother, I call her mother since she treats me like family, would all of the sudden shout shut up! You're all nuts! She has a strong Portuguese accent which nobody understands well and usually speaks her native Portuguese. So that made it funnier. 

Enjoy the break!

[scooter] said:

It's so sad that even with Alzheimers, she treats her daughter like crap. :(

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This is not at all uncommon.  It’s part of the disease, just like so many other things you have to get used to and let it go like water off a ducks back.

GL Nigel. Remember that you don’t have to live up to anyone else’s expectations and no one but you knows what’s best for you and your family. Everyone deals with it as best they can and no one has a right to pass judgment on your choices. My mom showed signs of dementia as early as 2007 or so, diagnosed with Alzheimer’s in 2013, moved to a memory care home in 2015 and died last month. My mil is deep in the throes of the disease now, but is undiagnosed because she hates doctors and medicine, so they’re just dealing with it on their own, probably until it’s an absolutely unlivable crisis.  The good news is there are a ton of great resources out there to help you if needed. Don’t be afraid to use them, sooner is better than later imo.  The people at the home my mom lived at the past 4 years were wonderful and she had the best care I could imagine. 

I can empathize with you, Nigel.  I am sort of going through this with my father right now, however he does not live with me.  He still lives at home with mom, but my mother can not handle things anymore.  He is currently going to an adult day care 3 days a week M-W-F to give my mother some relief.  My sister, who is currently out of work, goes to their house on Tuesday and Thursday.  I try to stop by on a couple of evenings and weekends.  We are at the point now where we are seriously looking at that next step and placing him into a home.  This whole experience/process absolutely sucks balls.   Best of luck to you and your family as you navigate these rough waters.

Galileo said:

I can empathize with you, Nigel.  I am sort of going through this with my father right now, however he does not live with me.  He still lives at home with mom, but my mother can not handle things anymore.  He is currently going to an adult day care 3 days a week M-W-F to give my mother some relief.  My sister, who is currently out of work, goes to their house on Tuesday and Thursday.  I try to stop by on a couple of evenings and weekends.  We are at the point now where we are seriously looking at that next step and placing him into a home.  This whole experience/process absolutely sucks balls.   Best of luck to you and your family as you navigate these rough waters.

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Some assisted livings have support for the family too. My friend's mom is religious so we found a place that does communion there and takes people to church. We made her room very homey with her stuff so that helps. The food sucks so when we visit we take her favourite foods and snacks. People like her room as it's cozy. Some people don't have a cozy setup. 

Even when they say they hate you, they don't. Surprisingly the mother has admitted a couple times she is thankful for the help and care. 

Good luck. Xx

My MIL has it.  Right about this time last year my FIL had to put her in a nursing home.  It's kind of a long story but the bottom line is that her dementia was a result of her decades of smoking.  The heart wrenching part of it, to me, is that my MIL is awesome.  She was the glue that always held the family together.  Everyone came to her to disclose everything, everyone got along with her, she was always funny, consoling, understanding and always there to listen.  When anyone had a problem, she would listen, give you her sage advice and she was always there to be an excellent peace maker.  On top of all that, she has (had I guess it is now) a great sense of humor.  I honestly feel like she died years ago.  Her and I have always been very close, we used to talk all the time, share stories, she would tell me all about her childhood, etc.  She always had an amazing memory.

I would say it all really started about 5 years ago.  Slowly, she became forgetful, hoarding things she didn't need, hiding money all over the house and working extremely hard at trying to cover up her obvious memory loss.  The kind, gentle, warm, big hearted MIL I knew, started to become paranoid, angry, bitter and mean and unfortunately my FIL became the center of her fury and rage.  My MIL is 85, my FIL is 83.  He would tell her that he was going to get groceries, would she like to come along?  She would say "no, leave me alone, I want to rest."  He would come back an hour later and she would become furious, accusing him of cheating on her, abandoning her, etc.  She just really got out of control.  It was never cute or funny it was an entire personality change, she would say extremely mean, hurtful, horrible things that she wouldn't recall saying a few minutes later.  It got to the point where she was combative and way more than my FIL could handle.  Eventually the difficult decision had to be made to put her in a nursing home, she needed full time care, full time attention and most importantly someone to watch her around the clock.  She would sleep during the day and be up all night, my FIL would go days on end without sleep, that didn't help matters.

My FIL still blames himself for her bering in a nursing home, still thinks it's all his fault.  The difficult part about him, is that he's always been the strong, silent type, the least touchy feely guy you've ever met but my MIL was the center of his world and the crushing part is watching him being completely guilt ridden is also pretty gut wrenching to watch.  He visits her at least twice a day, every single day.  Some days she hates him, some days she loves him.it's a horrible situation to be quite honest.  I wish I could say things will get better, I wish there was a cure, I wouldn't wish this on my worst enemy, I think this horrible disease needs more attention and I hope to God I never, ever have to watch another loved one go through this again.

Sullie said:

I honestly feel like she died years ago. 

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For me, Mom died during Hurricane Ike (2008).  She basically just shuffled around until she died in 2017.  She hated it.  She knew something was wrong, but never really knew what.  Dad took care of her until he died in 2015.  At that point, I had to become her legal guardian.  If you can get Power of Attorney, a will, and all that PLEASE DO IT AT ONCE.  I cannot stress this enough.  This shinola is bad enough without having to have a court supervise buying her some shampoo.  Fortunately, when Dad got sick a few years back, I accidentally found a really great mermory care home.  They were the best.  Even the food was good.

Sullie said:

My FIL still blames himself for her bering in a nursing home, still thinks it's all his fault.

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You really should get him some help with this.  Maybe a group he can talk to (or listen to).  No one should have to feel this way for something he had no control over.

Best wishes for him.

My dad had dementia.

My mother probably waited about 6 months too long to get him somewhere he could have constant care. Even with scheduled in-home care by pros and with her family giving her breaks, it just got to be too much.

It got to the point where she couldn't sleep (or even take a shower) for fear that he'd bolt out of the house, which he got to doing often. He couldn't figure out how to zip his own pants, but damned if he couldn't still work a multi-lock system on the door. Then he'd - best outcome - walk straight into the neighbor's house; worst was that he'd wander into the woods and folks would have to search for him.

Mom finally found a good place about 10 minutes from her house. They were extremely foresighted, as they bought long term health insurance when they were in their early 20s. This was back in the early '60s. That ended up covering about 80% of his assisted living costs. There were some other supplements, and Mom only had to come out of pocket for a couple hundred dollars a month.

For probably the last 18-24 months of his life, he didn't know who I was. He tried to fight me one time because I think he thought I was a rival for his wife's attention (although I don't think he knew she was his wife at that point).

Last time I heard him speak, he was curled up in his bed. You know how kids pretend to be asleep, but you can tell because they've scrunched their eyelids too tight? He was like that. My mom told him I was there to see him. He didn't say anything. Then she asked him if he wanted anything. He said "I want them to leave". 

He contracted pneumonia a few days later and died a couple of days after that. He had been in AL for about 9 months.

I was at a meeting in DC when my mother called and said "your father is declining". I had ridden with someone else and my car was 100 miles in the wrong direction. Luckily, the lady I was dating lived & worked close to where my meeting was taking place so I got dropped off to her house, she left work, and we went to the AL facility in Annapolis. They had him propped up in bed, but he was hacking something awful. 

Mom had already called in hospice, but was still thinking of sending him to the hospital. I told her it was her call, but I thought we should leave him where he was and let him let go. She agreed. They started hitting him hard with morphine to stop his coughing - which meant it was stopping his lungs from working.

We went to Mom's house for the night and decided we'd go back at 8 in the morning to see how things were if we didn't otherwise get a call in the night. Got up early the next morning and, at about 6:30, Mom said she was going over and that we could catch up later. I showered, then my phone rang with my mother telling me he was gone.

When we got there, my mother said she had been sitting there holding his hand as he was struggling (drowning, really) for about 10 minutes. All of a sudden, he sat up and his eyes flew open - then he laid back down and didn't breathe anymore.

She is the most pragmatic person I've ever known, and I have never know her for hyperbole. She thinks he waited for her to get there before he died, and who the hell am I to say that's not right?

This was in 2014. Though we had a complicated relationship, I still miss him terribly and hate what it made him those last couple of years. This ####### disease - for now - only goes one way. 

Awful disease.  2 of my aunts have had it, so not a lot of experience with it other than holidays and family visits when I was younger.  

Some people know they have it long before it's diagnosed. My former boss would forget the answer to her question 15 minutes later, totally not remembering she asked it. She was diagnosed at 67. It's not just an old person's disease. Some are diagnosed in their 50s.

There really needs to be more awareness and attention given to all the dreadful neurological diseases. No disease is given more attention to than breast cancer. Why is that? Makes me angry. Who isn't aware?? My hospital just had a think pink gathering. My treatment team who I love were there as they are every year. I can't go to this. I wrote wonderful reviews for them but I'm not about to showcase myself. How about a whole month of neurological disease awareness?? /rant

My grandmother had dementia. Heard the stories of her disappearing. She was in Iran so I never saw it. With these diseases, there is no parole. With most cancers like breast cancer, you stand a chance of walking free.

CurlyNight said:

Some people know they have it long before it's diagnosed. My former boss would forget the answer to her question 15 minutes later, totally not remembering she asked it. She was diagnosed at 67. It's not just an old person's disease. Some are diagnosed in their 50s.

There really needs to be more awareness and attention given to all the dreadful neurological diseases. No disease is given more attention to than breast cancer. Why is that? Makes me angry. Who isn't aware?? My hospital just had a think pink gathering. My treatment team who I love were there as they are every year. I can't go to this. I wrote wonderful reviews for them but I'm not about to showcase myself. How about a whole month of neurological disease awareness?? /rant

My grandmother had dementia. Heard the stories of her disappearing. She was in Iran so I never saw it. With these diseases, there is no parole. With most cancers like breast cancer, you stand a chance of walking free.

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My father was in his mid-60s when he realized something was wrong. He and my mother were living in this massive planned-community near Aiken, SC - 1,000s of homes, 3 golf courses, all gated, a bazillion streets. He had gone to the store one day, came back through the gates, and couldn't find the house he lived in. He finally got back to a gate and one of the guards led him back home. My mom was out until late that night. The next day, my father gave my mom the car keys and told her what happened. They moved back to Maryland - where my mother would have support - within a month.

I'll be 58 next April and am petrified every time I can't immediately recall something anymore. I know some of the memory loss is old age (& the million pounds of dope I did in the '70s & '80s), but still......

Uruk-Hai said:

My father was in his mid-60s when he realized something was wrong. He and my mother were living in this massive planned-community near Aiken, SC - 1,000s of homes, 3 golf courses, all gated, a bazillion streets. He had gone to the store one day, came back through the gates, and couldn't find the house he lived in. He finally got back to a gate and one of the guards led him back home. My mom was out until late that night. The next day, my father gave my mom the car keys and told her what happened. They moved back to Maryland - where my mother would have support - within a month.

I'll be 58 next April and am petrified every time I can't immediately recall something anymore. I know some of the memory loss is old age (& the million pounds of dope I did in the '70s & '80s), but still......

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I understand the fear. I'm 55. I'll never forget before cancer the time I went to the gas station and could not remember how to open the gas tank. After a few minutes I had to look in the manual! I was horrified. I had that car for 10 years by that time!

After treatments and with the meds I'm on, I have more loss of words issues from time to time. I wind up describing it. I can forget if I took my meds soon after the times I always do. So I decide to skip to be safe. If I multitask, something most likely will be incomplete. Single task too. Etc etc. I could go on but I'm getting depressed. So I've set a schedule and stuff up the best I can. I live alone so in those instances it's scary. All you can do is your best. Xx

Usual drill when I got home from work yesterday, she was in the kitchen with coat on waiting for her "ride home from work". My BIL,  my best friend for the past 25 years who lives a mile away, came by soon after to take her out to for a drive to try to recalibrate her. When he walked in she turned to me and said "Nigel, have you met my son Danny?".  My BIL said 'Ma, I've met him a bunch of times...he's a great guy". As she shuffled out the door she muttered "Eh...you don't have to work for him."

The day before, Sunday, my two kids had hockey games throughout the day so I was in and out. My wife is out of town and her siblings were tied up so we had an aide come stay for the day to keep her company. Well I guess at around 3PM she realized it was a Sunday and was like why the f am I working today, decided she was going to walk home and nobody was going to stop her. The health aide tried to talk her out of it but there's only so much she can do, she can't physically restrain her. So off she went, at a snail's pace, with the aide following closely behind. The aide called my SIL and put my MIL on the phone to talk to her..."I'm sick of working overtime, I'm going home!". My SIL pleaded with her to go "back to her office" to wait and she'd be there in an hour, and that she'd have to call the cops to come pick her up otherwise...."Pfft, go right ahead, they'll never catch me." Fortunately my niece got off work and was able to track them down (she'd walked almost a mile, a relative marathon for her) and bring her to her house. 

These were two new milestones in her descent: not understanding her son and I are well-known to each other, and boldly fleeing the house. Ugh. 

At some point she will reach a point where she is a danger to herself and to others... I think that is the point where she will need 24 hour attention, monitoring, and a safe place. You've captured and already seen the unpredictability of the disease, and moving her to a new environment can unfortunately make things worse, so it is tough all around. Don't blame yourself or let anyone else blame you for pursuing whatever arrangements are necessary for her. I think it is fantastic that she has lived with you for so long. Good luck.

Looks like youre getting good advice from others. These are all too brutal for me to read. I have seen it all firsthand and can only offer my well wishes.

Honestly I wish there was a way to humanly end it all for them. For as hard as it is on us, its gotta be worse for them. To have to come to grips with the fact you're losing your mind is terrifying. 

Nigel said:

Usual drill when I got home from work yesterday, she was in the kitchen with coat on waiting for her "ride home from work". My BIL,  my best friend for the past 25 years who lives a mile away, came by soon after to take her out to for a drive to try to recalibrate her. When he walked in she turned to me and said "Nigel, have you met my son Danny?".  My BIL said 'Ma, I've met him a bunch of times...he's a great guy". As she shuffled out the door she muttered "Eh...you don't have to work for him."

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STEADYMOBBIN 22 said:

Looks like youre getting good advice from others. These are all too brutal for me to read. I have seen it all firsthand and can only offer my well wishes.

Honestly I wish there was a way to humanly end it all for them. For as hard as it is on us, its gotta be worse for them. To have to come to grips with the fact you're losing your mind is terrifying. 

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I think I was a little bit naïve to how awful it is before seeing it firsthand. I kind of thought "so you forget stuff, but ignorance can be bliss, and you're not in physical pain...".

But it really must be terrifying, a constant state of confusion and anxiety.

STEADYMOBBIN 22 said:

Looks like youre getting good advice from others. These are all too brutal for me to read. I have seen it all firsthand and can only offer my well wishes.

Honestly I wish there was a way to humanly end it all for them. For as hard as it is on us, its gotta be worse for them. To have to come to grips with the fact you're losing your mind is terrifying. 

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My MIL has this and it is really sad.  This experience has really made me understand why Robin Williams did what he did.  Not saying, just saying.

Keith R said:

My MIL has this and it is really sad.  This experience has really made me understand why Robin Williams did what he did.  Not saying, just saying.

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Did RW have symptoms of Alzheimer’s? 

My father went through it, I saw the results firsthand from beginning to end.  Sorry for anyone that has to go through this, from person inflicted to the family.  Just a horrible, rotten experience.

Nigel said:

I think I was a little bit naïve to how awful it is before seeing it firsthand. I kind of thought "so you forget stuff, but ignorance can be bliss, and you're not in physical pain...".

But it really must be terrifying, a constant state of confusion and anxiety.

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And this is still the "early" stages....

Nigel said:

I think I was a little bit naïve to how awful it is before seeing it firsthand. I kind of thought "so you forget stuff, but ignorance can be bliss, and you're not in physical pain...".

But it really must be terrifying, a constant state of confusion and anxiety.

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It is, which is why they get so angry and lash out. Friend's mother is in and out. Even if she's out she may understand what's being said. We were told not to make her more frustrated. No trying to set her straight when things she says is wrong. Go along with everything. That's a tough one since my friend and her mother don't get along to begin with. They start arguing and I keep telling her just agree. It's tough since mother is mean and calls her some nasty stuff. Also don't laugh at her in front of her. It's not funny to them as that is their reality they can't fix. That'll send them into deeper depression.

As for no pain, mental anguish can manifest itself into physical pain. Eventually they will need strong pain meds as their organs slowly start to fail. 

Be kind and compassionate whether they are in or seem checked out. If her mother hallucinates, I go with it. You will hear wild stories. She's had a few whoppers about me. I go with it. For awhile she didn't recognise her kids. Now she does. You just don't know what's next. I too think for neurological diseases there should be the option to be humanely put to sleep like we do for our pets. 

Beef Ravioli said:

Did RW have symptoms of Alzheimer’s? 

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He suffered from severe depression. I don't recall if early dementia was suspected. But severe depression and anxiety can cause frustrating memory issues. 

STEADYMOBBIN 22 said:

Honestly I wish there was a way to humanly end it all for them. For as hard as it is on us, its gotta be worse for them. To have to come to grips with the fact you're losing your mind is terrifying. 

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Me, too.  I knew my mom had Alzheimer's ages before she showed any real symptoms.  If there had been a legal way to do it, I could have had her make her own choices in this area.

I just hope I take after my dad.

CurlyNight said:

Beef Ravioli said:

Did RW have symptoms of Alzheimer’s? 

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He suffered from severe depression. I don't recall if early dementia was suspected. But severe depression and anxiety can cause frustrating memory issues. 

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He had Parkinson's, which can lead to hallucinations and other mental issues.  

My MIL has Alzheimer's.  Diagnosed 5 years ago.  She's now in memory care at a facility (85 yrs old).  It is a devastatingly horrible disease.  She broke her hip last year so now in a wheel chair so her body is broken down now.  But for the previous 4 years she was as strong as a bear but her mind went quickly.  She began to slide hard when her husband died.  He was the opposite, body was broken down but he was sharp as a tack in mind.  

Oh the stories as we witnessed her decline over the years. Tragic. I've been married for 36 years and have known her since I was 16 and dating her daughter.  She is like a mother to me and I love her dearly.  We had planned for her to live with us after her husband died but it didn't work out.  Turns out we had to move her into a facility sooner than we thought because of her decline.  We simply could not have managed her at our house.  

It's a difficult situation.  

Nigel said:

I think I was a little bit naïve to how awful it is before seeing it firsthand. I kind of thought "so you forget stuff, but ignorance can be bliss, and you're not in physical pain...".

But it really must be terrifying, a constant state of confusion and anxiety.

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This isn't always the case.  Patients can't express themselves when they have some pain.  Urinary tract infections are common because, frankly, hygiene declines and things happen that would never happen years ago.  When my MIL gets irritated/angry at someone the first thing we ask them is does she have a UTI?  Happens often and she can't tell someone she's in pain, she doesn't know how to express it.  So she's irritable.  

Mrs. Rannous said:

CurlyNight said:

Beef Ravioli said:

Did RW have symptoms of Alzheimer’s? 

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He suffered from severe depression. I don't recall if early dementia was suspected. But severe depression and anxiety can cause frustrating memory issues. 

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He had Parkinson's, which can lead to hallucinations and other mental issues.  

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Williams was initially diagnosed with Parkinson's, but he actually suffered from a related disease called Lewy body dementia.

[scooter] said:

Williams was initially diagnosed with Parkinson's, but he actually suffered from a related disease called Lewy body dementia.

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True, but he didn't know that.  And it's not better anyway.  Although oddly, a friend of mine's father was diagnosed with Lewy body, but the post mortem showed it was actually Alzheimer's.

Terrible disease. My uncle had it and passed away today on his 75th birthday. Had been in a home over a year after my aunt couldn’t take care of him at home anymore. He’d progressively gotten worse over the past few weeks and it’s a blessing he finally let go. I’m hopeful with all the research being done that break throughs are coming soon. Nobody should have to see their loved ones go through it. GB all those who are and have.

Nigel said:

My MIL has lived with us (wife, three kids) for 18 years, since my oldest was three. On balance its worked out great. Her memory started to noticeably fade around a year ago, and over the last six months the pace has accelerated a ton. To live with someone who's going down this road can be heartbreaking, frustrating, oddly fascinating, maddening or funny as hell from one minute to the next, depending on what she's up to and the stress level in the house at the time. A ton of laughs actually, and I think its been good for my kids to witness/help manage it all.

It ain't getting better though, and I'm curious who else is or has gone through this and at what point you said "no mas" and had to send them off to live elsewhere.

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Not I, but my dad with my mom. He neede to go to hospital for three weeks with failing kidneys and a bleeding ulcer before he realised that my mom (and he) would be better off if she was in a nursing home. At the time she was afraid to be alone which meant dad had to be in man coverage and could get nothing done other than being with her

She lasted five years in the nutsing home (he spent almost every day there with her) until she went quietly in her sleep. She by far outlasted everyone else in her unit (8 apartments to a unit).

He is now 88, and still active. New "girlfriend" aged 81. 

Morale of the story: get help before it hurts you all 

cap'n grunge said:

Terrible disease. My uncle had it and passed away today on his 75th birthday. Had been in a home over a year after my aunt couldn’t take care of him at home anymore. He’d progressively gotten worse over the past few weeks and it’s a blessing he finally let go. I’m hopeful with all the research being done that break throughs are coming soon. Nobody should have to see their loved ones go through it. GB all those who are and have.

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sorry for your loss

cap'n grunge said:

Terrible disease. My uncle had it and passed away today on his 75th birthday. Had been in a home over a year after my aunt couldn’t take care of him at home anymore. He’d progressively gotten worse over the past few weeks and it’s a blessing he finally let go. I’m hopeful with all the research being done that break throughs are coming soon. Nobody should have to see their loved ones go through it. GB all those who are and have.

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Me, too.  

Sorry man, sucks to hear. 
 

I didn’t live with her at this point, but my grandmother is in a home with Alzheimers. I don’t even visit that often because she doesn’t recognize me anymore.  We send some money every month because she enjoys getting her hair “done” every week which is basically getting it washed and brushed and stuff in the little onsite boutique. It’s only $10 so if it makes her happy then that’s an easy choice. As far as anything else, my only take away is that I pray it never happens to me. 

My mom was a nurse.  She spent her last few years before retiring working at a state facility for the mentally and physically impaired.  Wards of the state with nowhere else to go, basically.  Many had Alzheimer's and she cared for the worst of the worst.  Her greatest fear in life was to get Alzheimer's.  Parents moved here to be close to me during their elder years and sure enough, she began showing symptoms.  After a couple of years of things getting worse, we took her, against her will, to see a geriatric psychiatrist.  I asked him not to tell her if she had Alzheimer's, to just tell me, explaining it was her greatest fear.  She had it and he told her.  I was furious.  Five minutes after we left, she had forgotten! Small blessing.

She died of a rare cancer before her Alzheimer's got too bad, but it was still an awful time.  We had to take her keys away so she couldn't drive.  Every day she forgot that she no longer could drive and we would have to have the same argument again. Every. Day. 

She had delusions.  She grew up in Switzerland during WW2 and she feared the Nazis.  She suspected every doctor she saw was doing experiments on her.  She thought she was going to a concentration camp when she was taken to the hospital by ambulance.  Horrible disease.

My MIL loves to talk and tell stories but she is incoherent.  Words fly and don't often make any sense but I'm sure they do in her head.  "I told him, yeah, if that's what he does and well, I went over there.  She said corn back house... but anyway, it's a nice horse."   And she talks so low it's hard to follow anyway so I just nod my head along with her.  

They say Alzheimer patients can't learn new things but they can recall things from early life.  This is true.  She can tell of things she did as a child, albeit bits and pieces of stories.  She does fill in cloudy spots with gibberish and has often made up some things with bits of truth that she can recall.  But she won't remember what she had for lunch today.  

She lived alone before moving to the facility.  Almost burned her house down by leaving stove on, etc. She used to wave at the TV news people and thought they were actually talking to her.  I thought it was funny at first then realized she was sick.  Late night preachers got her very riled up.  She tried to hand the man money through the TV to get him to shut up and stop talking to her.  True story.  She also still thinks her late husband is still alive and is cheating on her.  There is a female nurse in her facility that she believes is her husband.  

My moment of clarity came when we got her a new remote for her TV.  She could never work her old one and when we went over the TV was always at max volume. She didn't know how to turn it off or down.  I programmed it to automatically shut off at 10 pm. 

So the new remote was one of those big easiest on the market deals.  Had 5 buttons (big buttons... Power, up & down channel and up & down volume).  I spent 45 minutes trying to teach her how to turn it on, change channel and volume.  She couldn't get it.  I'd show one and then ask "So what button turns the TV on?"  She's look at me with glazed eyes and say I don't know. She literally could not comprehend the simplest instructions.  

It was soon after that we got her some in-home care while making arrangements for a retirement home.  

Nigel said:

My MIL has lived with us (wife, three kids) for 18 years, since my oldest was three. On balance its worked out great. Her memory started to noticeably fade around a year ago, and over the last six months the pace has accelerated a ton. To live with someone who's going down this road can be heartbreaking, frustrating, oddly fascinating, maddening or funny as hell from one minute to the next, depending on what she's up to and the stress level in the house at the time. A ton of laughs actually, and I think its been good for my kids to witness/help manage it all.

It ain't getting better though, and I'm curious who else is or has gone through this and at what point you said "no mas" and had to send them off to live elsewhere.

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Hi @Nigel,

I'm sorry I don't have any good advice or insight but I wanted to say thanks to you and your attitude on this. That's an awesome thing for your Mother in Law and your wife and a great example for your kids. 

My daughter works in the field of clinical trials and sent me this article yesterday.  She was involved in the study referenced.  It appears there could be a glimmer of hope on the horizon.

http://investors.biogen.com/news-releases/news-release-details/biogen-plans-regulatory-filing-aducanumab-alzheimers-disease

My aunt lived alone but she clearly was starting to fade.  We got her help to come every day but eventually she had a problem at night and that is when we made the decision to move her.

First place was a generic home for the old that had rehab facilities since she had a broken hip.

Once she recovered from the hip, then we moved into a very nice assisted living facility that specializes in only cognative issues (dementia etc).   Her memory is all but gone now, does not recognize any one in family but seems generally happy at the facility.

The cost is $9000 a month and is nothing like a nursing home.  These assisted living places are really nice.