Alzheimers "What to do" question again.

[creekland]

Being here at my in-laws cottage ahead of them, we've heard (true) stories (from neighbors) that solidify our thoughts that MIL can NOT be left alone, yet (as far as we know at the moment), FIL doesn't do anything about it and doesn't want her moving out.

 

We live 4 hours (with super good traffic conditions) away.  BIL and his family live 2 hours away.  Neither of us can provide full time babysitting.

 

I'm pretty sure money isn't a concern.  Lack of wanting to do anything "different" is.

 

Is there anything we can do?  FIL is definitely of sound mind even though he's 88 years old.  He's still active in the community and just in his own life (hunting, household repairs, etc). MIL is 86, but has reached the state where her mind is way too confused to be left alone.  She's definitely a danger to herself and can't even explain to others what's going on when she gets in situations.

 

Hubby will try talking with FIL again in the next day or two.  Do y'all have any suggestions I can pass on to him?  BIL is also supposed to come one of those days, but with Hermine heading up the coast, we can't count on his being here too.

[creekland]

ps  FIL has not been sharing these stories/events with us... I'm unsure why other than more of a "wish it weren't happening deal."

[zoobie]

If FIL is leaving her alone, can you impress upon him that it could be considered elder abuse/neglect? Is there an outside "professional" he trusts? Doctor, family lawyer, someone with authority other than his kids trying to tell him what to do. ;)

[Innisfree]

If FIL is leaving her alone, can you impress upon him that it could be considered elder abuse/neglect? Is there an outside "professional" he trusts? Doctor, family lawyer, someone with authority other than his kids trying to tell him what to do. ;)

 

I think, if there is a suitable person, this is a good suggestion.

 

With my own parents, there came a point when I simply said "I took Mom to the doctor today, Dad, and Dr. Whatsit said this isn't working anymore. X is getting worse, and nothing we are able to do under the present system can change that. Is it going to be a nursing home or live-in help?"

 

But my father was a realist.

 

It's never easy. Hugs.

[OneStepAtATime]

Agree, see if you can get an outside professional to talk to your FIL.  It can be hard to take advice/instruction from your adult kids, especially when it forces you to realize that you and your spouse are not only not young anymore but the life that you once had is going to change permanently.  

 

It might help to have a transition period where someone is hired to come into the home during the day to help MIL.  They could also better observe what is really happening and provide concrete feedback to the family.  Perhaps FIL would be more amenable if they were there to assist but not take over and he wasn't immediately facing a nursing home scenario for his spouse.  

 

[Seasider]

ps FIL has not been sharing these stories/events with us... I'm unsure why other than more of a "wish it weren't happening deal."

IME, elderly couples do a TON of covering for one another's deficiencies, to the point of remaining in quite dangerous situations. So regardless of his motive, it is a common occurrence.

 

Hugs to you - this is a difficult stage. We dread something happening, but waver about where and when to step in. Making sure your dh (or other responsible family member) has a good durable POA for business and medical decisions is where I'd start, if you don't already have that in place.

Edited September 2, 2016 by Seasider

[Myra]

I think that it is definitely hard for a man of your father's generation to give up control in his life.  With my father, we started out with hiring a cleaning person to come to the house once a week to "help" mom out with laundry and household stuff.  After that was accepted by my dad and became routine then we found a stay-at-home mom (neighbor) who was willing (for pay) to do the grocery shopping and prepare breakfast and lunch at the house. We sort of snuck help into his life until people coming and going became routine. 

 

As things progressed, we have someone that comes from 9-12 and a different person from 3-6 daily (parents nap in the afternoon and then in evening watch tv and go to bed early).

 

Luckily, my parents live in Florida in a 55+ community so people who needed the extra cash and had the available schedules made this work.

 

That's where we are in this scenario.

 

Myra

[goldberry]

My mom can't be left alone either, fortunately my dad realizes it mostly.  He still goes out, but only for short periods, often when she is napping.  His denial issue is her driving. :(

 

I would approach him really honestly about it being a safety issue.  

[Innisfree]

Regarding the gradual change, I think that can be very helpful. The "system" I mentioned had started as weekly help with cleaning, and progressed to several times per week help with personal care by the time we had the conversation about live-in care.

[prairiewindmomma]

Even if he's in  his "right mind", some of the rigidity of his thinking may come from age-related changes.  I have noticed that has people age, we find it harder to be flexible or to change.  Being directly confrontational can lead to ugliness, so choosing tone and angle can be important.

[zoobie]

One thing that was helpful for my stepmother was getting a social worker who specializes in elder care to do a walk through of their house. She described it as baby proofing for a dementia patient. Her mom lives with them and she was providing 24/7 care, but her sister controls the purse strings. So sister wouldn't approve any hours for respite care or items that would help her take care of their mother. It was a mess. The social worker really helped them.

[MysteryJen]

My mom covered for my dad and definitely did not take steps to deal with the dementia early enough. He was extremely difficult (moving from kind and gentle man to angry rage-fueled man), so some easier options did not work well. If she would go to an adult day care, that would bring more people into the loop, which is usually what is needed to start to see the situation more clearly. Also an home care provider can be a second set of trusted eyes.

 

For us, it was a fall and a hospital stay and a doctor, finally, finally, saying "hospice" that got my mom moving to take much needed steps of looking at nursing homes.

[Seasider]

One thing that was helpful for my stepmother was getting a social worker who specializes in elder care to do a walk through of their house. She described it as baby proofing for a dementia patient. Her mom lives with them and she was providing 24/7 care, but her sister controls the purse strings. So sister wouldn't approve any hours for respite care or items that would help her take care of their mother. It was a mess. The social worker really helped them.

Oh my goodness, that's awful.

 

Not the social worker part, that's great. The money controlling sister part and no respite care, awful.

[FriedClams]

Our road, over the past 8-10 years has been...

 

1. In home help. Not a maid, but not a nurse. Trained to help, bathe, take to appointments, etc. First for a couple days a week, then to a few, then to almost daily.

 

2. Assisted living. Again, help bathing, make sure meds are being taken, etc. We were told to expect 2-3 years out of AL before the typical resident needs more help.

 

3. One parent to full memory care. One scraping by in AL. Barely. First Memory Care place, ok. Second place, much much better. Placement really does make a huge difference.z

 

That's where we are. It's awful. It's expensive and heart wrenching and sad and hard. (HUGS)

Edited September 2, 2016 by FriedClams

[Laurie4b]

I agree that spouses cover for one another as they get older. Perhaps it is denial, perhaps it is wanting to keep the other from what is regarded as loss of dignity. 

 

I have been told that men of that generation do not listen to their daughters as much as to sons, so maybe your dh has a chance.  But if not, that probably means that everyone your FIL had looked up to in life has passed on and now it's the younger generation whom he has advised that are advising him. As others have suggested, a professional could be helpful.

 

I think speaking with him about what the neighbors have said must be done tactfully so as not to make him feel isolated, but "the neighbors have expressed some worry to us about MIL.  Have you talked with the doctor about these changes? My understanding is that when x or y is happening it's an indication that the person could be harmed by being left alone and I know you wouldn't want that to happen...." 

 

Or perhaps he lacks info and thinks it's a matter of "to the nursing home she goes" or "status quo." You might find eldercare resources for him and then suggest that he introduce them to your MIL as friends or helpers or whatever.  He might be most comfortable with the first visit being while he is there, and then know who to call to schedule so that he can get some errands done while she is at home. 

 

I do think bringing up the possibility of elder neglect is important if he's being really stubborn and all else fails. Mentioning that if the neighbors who continue to be concerned after talking to family might call protective services or the police next (if she wandered for instance), that if he were charged with elder neglect, he would lose all control might do the trick. 

 

Sorry. All this is SO hard. 

[creekland]

Our road, over the past 8-10 years has been...

 

1. In home help. Not a maid, but not a nurse. Trained to help, bathe, take to appointments, etc. First for a couple days a week, then to a few, then to almost daily.

 

How did you find someone trustworthy?

 

This question is for everyone, of course.  I think this would have to be a first step.

[Myra]

There is one problem with continuing with home care with help for a longer term solution.

 

 Looking back, it has been nice having both my parents living in their own home together with someone that comes from 9-12 and a different person from 3-6 daily (parents nap in the afternoon and then in evening watch tv and go to bed early)

 

BUT......

 

as the time is quickly approaching where both of my parents will need more care, most assisted living places won't let both of my parents live in an assisted-living apartment because of my mother's Alzheimers whereas if they moved in a few years ago they could have, and most likely, still would be allowed to coexist in one of the apartments and not be separated.  The places we've checked out wan Alzheimer patients to live in a Memory Ward and my father in the assisted-living apartments alone.

 

So...

what is the next step?  Who knows?

 

Myra

 

 

[Seasider]

There is one problem with continuing with home care with help for a longer term solution.

 

Looking back, it has been nice having both my parents living in their own home together with someone that comes from 9-12 and a different person from 3-6 daily (parents nap in the afternoon and then in evening watch tv and go to bed early)

 

BUT......

 

as the time is quickly approaching where both of my parents will need more care, most assisted living places won't let both of my parents live in an assisted-living apartment because of my mother's Alzheimers whereas if they moved in a few years ago they could have, and most likely, still would be allowed to coexist in one of the apartments and not be separated. The places we've checked out wan Alzheimer patients to live in a Memory Ward and my father in the assisted-living apartments alone.

 

So...

what is the next step? Who knows?

 

Myra

 

This is a big thing. It appears to be a situation in which how much money you have available makes a big difference. If a person has to rely on Medicaid for long term care, the options are very narrow and seem to largely involve separating the couple.

Edited September 2, 2016 by Seasider

[Innisfree]

As a quick solution to finding someone, Comfort Keepers or similar companies were what we used.

 

Longer term, we advertised, checked references, etc. Our best luck was with word-of-mouth recommendations.

 

Be really, really careful about anyone off Craigslist. Despite checking all references, we had a couple of dicey experiences.

[prairiewindmomma]

Myra--we have both spouses in a cognitive care unit even though only one qualifies.  We are paying $9K a month to keep them both there, but it was what was desired by the non-Alzheimers spouse.  

 

OP--as far as finding qualified elder care in-home goes, we checked with our local center for the aging, and got recommendations. We liked the agency approach as there was more oversight, and visits by a variety of people with a log-in book kept in the home to document visits.  Your situation, with being so far away is worrisome to me, though. In our experience, care was as good as we could supervise, iykwim.

 

Drop in adult centers are lovely when it's a child caring for a parent, but IME, our family members have not been receptive to the idea, in part because of resistance by the spouse with cognitive issues.  Contradicting the will of the impaired spouse seems to be a sticky wicket. 

[FriedClams]

How did you find someone trustworthy?

 

This question is for everyone, of course. I think this would have to be a first step.

We asked around. You're not alone on this road. Ask everyone you know and you'll quickly find a bunch of recommendations. Then we interviewed people at the agency that was recommended. We found a great fit for my parents.

[zoobie]

How did you find someone trustworthy?

 

This question is for everyone, of course. I think this would have to be a first step.

My stepmother uses a service (Visiting Angels) to avoid dealing with taxes and liability.

[StephanieZ]

If FIL is leaving her alone, can you impress upon him that it could be considered elder abuse/neglect? Is there an outside "professional" he trusts? Doctor, family lawyer, someone with authority other than his kids trying to tell him what to do. ;)

 

This is a great idea.

 

I think dealing with an intact couple aging is super complicated. My mom was unmarried when she developed ALZ, so I didn't have that complication. You'd think it'd be helpful to have a spouse/caretaker, but there are complications as well. 

 

At the end of the day, though, if you trust that your FIL loves your MIL, and he is of sound mind, and he is a good person, then I would tread very, very carefully. I know that for me, I want to be with DH until I drop. Period. There would be no greater injury you could do to me than separate me from him. So, anyway, I'd respect his "rights" to be her caretaker, while doing all I could to support/help and also to cajole/convince . . . If there comes a time when FIL is not of sound mind or MIL is clearly being neglected, it will become very clear, and then you will have to be more assertive . . .

 

(((hugs))) This is a terrible disease. 

[StephanieZ]

There is one problem with continuing with home care with help for a longer term solution.

 

 Looking back, it has been nice having both my parents living in their own home together with someone that comes from 9-12 and a different person from 3-6 daily (parents nap in the afternoon and then in evening watch tv and go to bed early)

 

BUT......

 

as the time is quickly approaching where both of my parents will need more care, most assisted living places won't let both of my parents live in an assisted-living apartment because of my mother's Alzheimers whereas if they moved in a few years ago they could have, and most likely, still would be allowed to coexist in one of the apartments and not be separated.  The places we've checked out wan Alzheimer patients to live in a Memory Ward and my father in the assisted-living apartments alone.

 

So...

what is the next step?  Who knows?

 

Myra

 

This is heartbreaking. 

 

For me, that is one of the main reasons I intend to have $$$$$ banked before retirement. So any help can be hired as needed to avoid separation. Everyone who knows me knows loud and clear that I'd prefer dead to separated from my husband. Toss me off a cliff, but don't put me in a home away from dh. Period. End stop.

 

I think it is so horrible that our elder care systems frequently result in separating spouses. It's horrible. 

 

 

[creekland]

There is one problem with continuing with home care with help for a longer term solution.

 

 Looking back, it has been nice having both my parents living in their own home together with someone that comes from 9-12 and a different person from 3-6 daily (parents nap in the afternoon and then in evening watch tv and go to bed early)

 

BUT......

 

as the time is quickly approaching where both of my parents will need more care, most assisted living places won't let both of my parents live in an assisted-living apartment because of my mother's Alzheimers whereas if they moved in a few years ago they could have, and most likely, still would be allowed to coexist in one of the apartments and not be separated.  The places we've checked out wan Alzheimer patients to live in a Memory Ward and my father in the assisted-living apartments alone.

 

So...

what is the next step?  Who knows?

 

Myra

 

Sorry to hear that and I hope you can find a solution.  My in-laws are long past that stage where they'd be accepted together due to how far gone MIL is (and how capable FIL is).  Right now, even trying to find a place like that is not part of our thoughts.  As long as he wants it, we want to keep them together so we're plotting out "how."

 

As a quick solution to finding someone, Comfort Keepers or similar companies were what we used.

 

Longer term, we advertised, checked references, etc. Our best luck was with word-of-mouth recommendations.

 

Be really, really careful about anyone off Craigslist. Despite checking all references, we had a couple of dicey experiences.

 

As it stands now (after hubby talked with him yesterday), FIL is going to be checking with his doctors (MIL doesn't see any and never has) to see if they have recommendations.  I mentioned Comfort Keepers (and similar) to hubby to keep in mind as a backup if FIL doesn't get a worthy recommendation.  They don't have a computer (or smart phone or internet access in general), so there are no worries about Craigslist.

 

We asked around. You're not alone on this road. Ask everyone you know and you'll quickly find a bunch of recommendations. Then we interviewed people at the agency that was recommended. We found a great fit for my parents.

 

I hope we can find a great fit too.

 

MIL has reached the stage where she's very fearful if FIL isn't around - in sight.  Her memory of pretty much anything is gone - most of her past (and what remains is super vague + not generally correct) - anything of the present, except she knows she has to cling to FIL.  Even my being here to sit with her isn't helping much because if she doesn't see him, she must go look for him.  I can talk her out of it for maybe 5 - 15 minutes.

 

This has been a problem even when FIL is home because she won't check his bedroom to see if he is sleeping (at night) or sometimes she misses him when he's in other areas of the house or workshop.  Then... he still likes to go places (hunting, club meetings, shopping, etc) without her.  He used to be able to park her in front of the TV and she'd stay, contentedly watching Fox News repeat itself over and over (ugh!).  One of these had her lying in a ditch (for how long?) after she fell along a mostly deserted road... Generally she ends up at the neighbors, but they aren't always home either.  Then I think her reliance on the News (any news) for so many years has put a sense of terror in her mind.  The stories she makes up about what has happened seem to reflect that.

 

So... my suggestions at this point have been to CHANGE THE CHANNEL when she's watching TV (they tried the Weather Channel yesterday - it seemed ok).  She needs repetitive, not shows.  She knows she can't follow shows and that irritates her.  I've thought of trying to find cute animal videos for her to watch over and over, but there's no way she'd know how to restart it when it reached the end.

 

Then we're seriously contemplating key activated (only) deadbolts for the doors.  We know that has pros and cons... but the pros seem to outweigh the cons.

 

Plus, someone needs to be with her at all times when FIL isn't here.  She'd have major issues being locked in her house alone - can't blame her there either.  Having been with her when FIL is merely outside, whoever stays with her is going to have a chore keeping her calm, so I don't know what to suggest for that - esp when he wants to go out for more than an hour or two.  He's aware he might have to give that up, but I don't know if he actually will.  Perhaps a regular caregiver can form a bond (that's what we're hoping for) so he can get some real respite.

 

Then there's the regular (Alzheimers) caregiver part.  She forgets to use silverware - even on things like coleslaw - so needs to be reminded to wash her hands and everything needs to be cleaned afterward, etc.  Washing her clothes, esp her shirt (the one shirt she loves), while she is sleeping has worked out, but is tricky timing-wise as she doesn't always sleep for long...

 

I can definitely see where we need a super special person to handle it all and remain nice when no one is watching, esp day in and day out.  We're hoping that special someone is out there...

 

As usual, any other tips are appreciated.

[Seasider]

You may have addressed this up thread but I missed it - is any form of adult day care an option? I have seen this with relatives, when the Alz spouse was enrolled in a daytime program, the caregiving spouse realized that it actually improved quality of life for BOTH of them. Is that a possibility?

 

It also made the transition to full time care - when it became absolutely necessary - much more acceptable.

[creekland]

You may have addressed this up thread but I missed it - is any form of adult day care an option? I have seen this with relatives, when the Alz spouse was enrolled in a daytime program, the caregiving spouse realized that it actually improved quality of life for BOTH of them. Is that a possibility?

 

It also made the transition to full time care - when it became absolutely necessary - much more acceptable.

 

I think if they had started this earlier, it might have been an option.  Right now though, none of us think it will work.  She is NOT open to new places and people and she can get angry at the drop of a hat.  She got up and woke FIL up this morning.  He mumbled something about her not sleeping long enough.  She's super angry, but has pushed it off to a neighbor having done it - which is better than when she was angry at FIL, but still...

 

Right now we're on their cottage porch watching the waves and wind from the storm.  It's keeping her occupied (phew!) and her mind has finally forgotten this morning's source of anger.  She has noticed FIL and hubby aren't in the cottage anymore - they went outside.  I can't help but wonder how long the storm will occupy her mind vs FIL's presence.  If there were no storm, I'm not sure how we'd have gotten over this morning's issue or FIL being out of sight.  Everything else I tried (past stories, asking about relatives I think she can still remember, pointing out birds, etc) failed.

 

Fortunately, she doesn't mind my being on the computer.  I don't even think she notices as long as I respond to her repetitive comments with repetitive answers.  That helps keep my sanity - plus watching the waves come over the pier is pretty cool.  It beats TV!

 

ps  She doesn't remember me anymore - I got a blank look both yesterday when they arrived and this morning when she first saw me.  But she accepts me sitting with her and talking with her.  She also washed her hands after breakfast when I suggested it (rather than hubby or FIL), so I think she'll accept someone else.  Other visits she has more or less remembered me though, not by name, but by some vestiges of memories.

[zoobie]

She needs a doctor. There are meds that can significantly help with anger and anxiety. Also, if she's had a sudden increase in irritability, it could be a UTI. They're very common and affect behavior.

[TranquilMind]

I think that it is definitely hard for a man of your father's generation to give up control in his life.  With my father, we started out with hiring a cleaning person to come to the house once a week to "help" mom out with laundry and household stuff.  After that was accepted by my dad and became routine then we found a stay-at-home mom (neighbor) who was willing (for pay) to do the grocery shopping and prepare breakfast and lunch at the house. We sort of snuck help into his life until people coming and going became routine. 

 

As things progressed, we have someone that comes from 9-12 and a different person from 3-6 daily (parents nap in the afternoon and then in evening watch tv and go to bed early).

 

Luckily, my parents live in Florida in a 55+ community so people who needed the extra cash and had the available schedules made this work.

 

That's where we are in this scenario.

 

Myra

 

This is how I would and did handle an elderly parent needing help.  I wouldn't usurp their autonomy,.not that you can, if FIL is of sound mind.  I would just add a helper "for their convenience" just to help out. 

 

I found some lovely ladies to do this.  One was so wonderful that our doctor asked where on earth we found her.  As a bonus, she found her husband taking care of my mom.  The two of them were in the grocery store and struck up a conversation with a man there. 

 

I hired her on the spot when I found out (background checking) that her last patient had gotten better, not died.  That seemed like a good sign.  It also happened for my mom, who did well for a couple more years.    Anyone should hire her.

 

[TranquilMind]

She needs a doctor. There are meds that can significantly help with anger and anxiety. Also, if she's had a sudden increase in irritability, it could be a UTI. They're very common and affect behavior.

 

This!  Have not read the whole thread, but knowing what I know now, a UTI is the first thing to look for when someone seems to change. 

 

[mschickie]

We are dealing with my Aunt and dementia (possibly Alzheimer).  We convinced her to move to my area (she lived in another state) and ended up getting her in a senior living home (she wanted a regular apartment but my sister and I knew she needed more help).  The nice thing about that facility is that there were aide services we could hire that were in the building.  They would come in and help her with medications, showering and getting dressed.  

 

You might talk to your fil about moving into one of these types of places.  There were lots of very active seniors there, some who drove and couple who even went to work.  Meals were available but there was still a small kitchen in the apartments.  Something like that might be a good first step for them so she is around more folks who can keep an eye out on her and he will still be able to do all of his activities.  The fact that he will be there at night and the aides are on call could really help him.

 

With my Aunt she is now in a nursing home.  She fell in the apartment in May and the hospital would not release her to love on her own because her walking was unstable.  She then came down with pneumonia and is not back to walking.  We know she can because one day she went missing and it turns out she wheeled herself into the bathroom, got out of her wheelchair and on the toilet by herself.  The only thing was she could not get off and did not pull the cord for help.  In therapy they would struggle to get her out of the chair, if she was out she could walk but it is like she cannot remember how to get up.   She also does not always remember to use her silverware.  Having a conversation is sometimes difficult because she looses the words.  The nursing home is not ideal but at least we know she is safe. 

[Innisfree]

I've been wracking my brain for the title of a very practical and helpful book I once read. It was written by a woman who had been deeply involved with an English home for seniors with dementia, and talked about a lot of small coping and management techniques. One was targeted at the spouse-who-isn't-allowed-to-get-away syndrome.

 

She suggested identifying a signal or word or phrase which would explain the absence in a very familiar, accepted way. Just what this was might vary with the individuals, but I remember she mentioned one man who had always carried the newspaper off to the bathroom with him. So, when he needed to leave, he'd pick up the paper, wave it in a suggestive way at his wife, and head off, and she'd be comfortable in the assumption that nothing threatening was connected with his absence from the room.

 

I wish I could remember the name or author of the book. It was older, maybe eighties or even seventies, and not medically focused at all, but had a wealth of compassionate wisdom on handling the daily difficulties. The author had gotten her start in this area by looking after her own mother, I think. Maybe someone else knows it.

[creekland]

She needs a doctor. There are meds that can significantly help with anger and anxiety. Also, if she's had a sudden increase in irritability, it could be a UTI. They're very common and affect behavior.

 

The last time FIL tried to take her to the doctor (over an injury), she supposedly tried to get out of the car (while moving) once she figured it out.  They never made it there.  If they could somehow overcome that, how would one get her to take meds?  She won't even take Tylenol now.  Can they be put in food without affecting taste?

 

She's always had an aversion to doctors.  That's not new and she has kept it in her memory.  She used to take Tylenol fairly frequently, but won't now (or recently).

[creekland]

This!  Have not read the whole thread, but knowing what I know now, a UTI is the first thing to look for when someone seems to change. 

 

 

This is the way MIL has always been.  She didn't actually like me when she was of sound mind.  Her acceptance/affection has come once she started losing capacity.  Prior to that she would tell hubby we should get divorced and felt we raised our kids wrong, etc.  They were a first time obedience household and are very racist.  We're not... it made for a bit of contention since neither of us would budge - and I corrupted her boy.  Now she loves our (grown) kids when she sees them (though right now she doesn't remember them) and she accepts me.  She's still racist (very) and it annoys the bejeebers out of me, but I know there's nothing I can do except ignore it and be glad when that part dies out.  It ended with their generation.  That's a plus.

 

I doubt she has a UTI.  This is just "her."

[zoobie]

The last time FIL tried to take her to the doctor (over an injury), she supposedly tried to get out of the car (while moving) once she figured it out.  They never made it there.  If they could somehow overcome that, how would one get her to take meds?  She won't even take Tylenol now.  Can they be put in food without affecting taste?

 

She's always had an aversion to doctors.  That's not new and she has kept it in her memory.  She used to take Tylenol fairly frequently, but won't now (or recently).

 

My stepmother hides it in her mom's food or drink depending on the medication. It's not ideal, but it keeps her from hurting herself or her caretakers. Dementia is an awful, awful disease. 

 

It took three people to get her to the doctor at the height of the anger. She listens to my dad for some reason as the Voice of Authority and will sometimes comply with him when she won't for her daughters. She's 8 years older now and not as strong and the dementia has progressed to where she's not really there at all and tends to be more compliant. Unfortunately, my stepmother is also 8 years older and isn't strong enough to lift her on her own. Anyway, awful disease. :(

[creekland]

My stepmother hides it in her mom's food or drink depending on the medication. It's not ideal, but it keeps her from hurting herself or her caretakers. Dementia is an awful, awful disease. 

 

It took three people to get her to the doctor at the height of the anger. She listens to my dad for some reason as the Voice of Authority and will sometimes comply with him when she won't for her daughters. She's 8 years older now and not as strong and the dementia has progressed to where she's not really there at all and tends to be more compliant. Unfortunately, my stepmother is also 8 years older and isn't strong enough to lift her on her own. Anyway, awful disease. :(

 

:iagree: Just couldn't bring myself to add a "like."  The only thing good that has happened has been her forgetting how much she doesn't like me.

[Reefgazer]

I just lived through this this past summer, complete with hiding the situation from us kids. My parents are in NY and what you are able to do about the situation varies somewhat from state to state, but in NY, the short answer was that we were unable to (legally) do anything to force our parents out of a fairly dangerous situation. We consulted an elder care attorney about it, and while he sympthized with our situation, he told us that our parents had civil rights that meant we couldn't force them to move out of their home. Since NY is generally high regulation state (elder law is one area where that is not so), it wouldn't surprise me if other states are similar. My brother and I finally convinced my mom to agree to move out, then went to their house and told dad he has to come with us, which, because he was a bit confused, he agreed to go. We then literally padlocked he doors and drove him to a new house and took his license. We got mom on board by asking her to agree to a "trial move" that was reversible if it didn't work out (month to month rental home on one floor, with no change of official residency until she confirmed she was happy there).

 

My advice is to get the sane parent on your side, and then force what needs to be forced. We couldn't have pulled it off without my mother aiding and abetting. Do I think I was wrong on forcing the issue? Yes, I do. But I am not sorry and would do it again in a heartbeat.

 

Being here at my in-laws cottage ahead of them, we've heard (true) stories (from neighbors) that solidify our thoughts that MIL can NOT be left alone, yet (as far as we know at the moment), FIL doesn't do anything about it and doesn't want her moving out.

 

We live 4 hours (with super good traffic conditions) away. BIL and his family live 2 hours away. Neither of us can provide full time babysitting.

 

I'm pretty sure money isn't a concern. Lack of wanting to do anything "different" is.

 

Is there anything we can do? FIL is definitely of sound mind even though he's 88 years old. He's still active in the community and just in his own life (hunting, household repairs, etc). MIL is 86, but has reached the state where her mind is way too confused to be left alone. She's definitely a danger to herself and can't even explain to others what's going on when she gets in situations.

 

Hubby will try talking with FIL again in the next day or two. Do y'all have any suggestions I can pass on to him? BIL is also supposed to come one of those days, but with Hermine heading up the coast, we can't count on his being here too.

Edited September 3, 2016 by reefgazer

[Reefgazer]

My mom told me later that she was embarrassed her and dad could no longer manage on their own, which is why they turned down every stitch of help (so they refused to admit a home cleaner, home health aid, or social worker to their home, and even refused help from us kids. They were an extreme case of independence). Mom is 86, and dad died a few weeks ago, just short of 91. In the past year or so, they avoided going to the doctor to avoid discussing the situation; they actively hid it from everyone, including us kids, and refused to sign a POA until 2 weeks before dad's death, when it became apparent that there was no way to hide it anymore.

 

ps FIL has not been sharing these stories/events with us... I'm unsure why other than more of a "wish it weren't happening deal."

Edited September 3, 2016 by reefgazer

[Reefgazer]

My dad was a PITA, fiercely independent, and set in his ways like this (though not racist) as long as I've known. I was never able to convince the doctors that this was not dementia-related.

 

This is the way MIL has always been. She didn't actually like me when she was of sound mind. Her acceptance/affection has come once she started losing capacity. Prior to that she would tell hubby we should get divorced and felt we raised our kids wrong, etc. They were a first time obedience household and are very racist. We're not... it made for a bit of contention since neither of us would budge - and I corrupted her boy. Now she loves our (grown) kids when she sees them (though right now she doesn't remember them) and she accepts me. She's still racist (very) and it annoys the bejeebers out of me, but I know there's nothing I can do except ignore it and be glad when that part dies out. It ended with their generation. That's a plus.

 

I doubt she has a UTI. This is just "her."

[creekland]

My mom told me later that she was embarrassed her and dad could no longer manage on their own, which is why they turned down every stitch of help (so they refused to admit a home cleaner, home health aid, or social worker to their home, and even refused help from us kids. They were an extreme case of independence). Mom is 86, and dad died a few weeks ago, just short of 91. In the past year or so, they avoided going to the doctor to avoid discussing the situation; they actively hid it from everyone, including us kids, and refused to sign a POA until 2 weeks before dad's death, when it became apparent that there was no way to hide it anymore.

 

 

FIL finally shared financial (and more) info with hubby a couple of months ago when his heart condition was super bad and he literally thought he wasn't going to make it.  Fortunately, their finances are quite good.  There's no POA yet though - just the will.  FIL's mind is still very good, better than many younger than he is IMO.  We're seriously trying to help him with what he wants to do - not force him into anything.  On his own it's quite dangerous at this point.  He needs his time off, but she still needs care.

[creekland]

My dad was a PITA, fiercely independent, and set in his ways like this (though not racist) as long as I've known. I was never able to convince the doctors that this was not dementia-related.

 

 

Our situations definitely sound quite similar - sadly similar.  IMO, FIL is a saint with what he's put up with over decades - and he still cares for her with her current condition.  He has often "escaped" in the past with much of his life though - hunting, social clubs, handyman jobs for oodles of others.  He's used to doing so - and therein lies the problem for MIL.

[Seasider]

I am about to run out the door so I will come back and catch up later. Just wanted to quickly add two things.

 

1 - You are a wonderful DIL! This is a tough situation and you are doing your best to handle it respectfully. It is a very difficult row to hoe. Kudos to you for your willingness to engage, many opt to bail out instead.

 

2 - I do think you're going to need to get a medical person involved somehow. At some point care options may depend on having physicians' diagnoses on the record. So I hope you are able to get that figured out.

 

I will pray that you will come up with creative solutions to this challenging set of circumstances. And that MIL will be even tempered and cooperative.

Edited September 3, 2016 by Seasider

[creekland]

1 - You are a wonderful DIL! This is a tough situation and you are doing your best to handle it respectfully. It is a very difficult row to hoe. Kudos to you for your willingness to engage, many opt to bail out instead.

 

2 - I do think you're going to need to get a medical person involved somehow. At some point care options may depend on having physicians' diagnoses on the record. So I hope you are able to get that figured out.

 

I will pray that you will come up with creative solutions to this challenging set of circumstances. And that MIL will be even tempered and cooperative.

 

1 - I'm actually feeling guilty that we aren't here more often.  We try to make it once per month (usually over longer weekends due to hubby's job), but that seems pretty inadequate right now.  This would be easier if we lived closer, but it's not like either of us are moving.  We're both too entrenched where we are.

 

2 - If they ever get her to see anyone, there's not much doubt.  On two of her escapades recently she came across total strangers and they both instantly knew something was wrong - that she wasn't of normal mind.  One called the police who helped find relatives.  The other contacted a mutual friend who filled them in and contacted BIL.  So far things have worked out ok, but there are too many true stories (more than these) to feel comfortable leaving the situation "as is."

[zoobie]

Not taking her to the doctor could be seen as elder neglect. Leaving her alone at this point definitely would be. I'd try to get an elder care attorney involved to explain the issues to FIL and set up the necessary legal documents for both of them. 

[Innisfree]

There are some visiting physician practices for the elderly and /or disabled. They can be a godsend in this situation. It's worth looking around.

[Laurel-in-CA]

My stepmother uses a service (Visiting Angels) to avoid dealing with taxes and liability.

 

My daughter does this kind of care for elderly and disabled clients, both in-home housekeeping/assistance and taking them out to errands, church, exercise classes, etc.

 

If Creekland's dad set up someone to come 3-4 hours a couple times a week, he could get his errands done and get some respite himself while still having his wife cared for and in company. It's a good first step towards accepting that care is needed and the agency can recommend when/as further care is needed.

 

Often local senior centers have someone on staff or on referral with a social work background who can help family with assessments and recommend community resources. That was our first source of help when my mom was declining.

[prairiewindmomma]

1. Meds can be crushed and served in something like chocolate pudding. Most elderly people love sweets.

2. FIL may be in good health now, but that can change in a second. We were in a very similar situation with my grandparents, and then my grandfather had a stroke and things had to change. The amount of chaos from that situation added way more stress for everyone than would have otherwise happened.

3. I think it's time to gently put your foot down as a united front between all of their children--the current situation is too much of a burden for FIL to be asked to handle on his own, and you are concerned (rightfully) for MIL's safety.....not because of a failure on FIL's part, but because MIL has become too complicated for anyone to handle. It's got to be uncomfortable for her to be frightened all of the time, and her anxiety (& likely anger) need to be addressed.

[creekland]

My daughter does this kind of care for elderly and disabled clients, both in-home housekeeping/assistance and taking them out to errands, church, exercise classes, etc.

 

If Creekland's dad set up someone to come 3-4 hours a couple times a week, he could get his errands done and get some respite himself while still having his wife cared for and in company. It's a good first step towards accepting that care is needed and the agency can recommend when/as further care is needed.

 

Often local senior centers have someone on staff or on referral with a social work background who can help family with assessments and recommend community resources. That was our first source of help when my mom was declining.

 

I will recommend he check with a senior center if he doesn't find referrals from his doctors (since that's his plan to start with right now).  I'll have hubby look up phone numbers for him making it easier.

 

MIL's mind is so gone now that hubby was sitting right here with us and got up to go call BIL from another room.  He had barely gotten started dialing the number and MIL asked me, "Oh, is ____ here?  Where is he?"  FIL is taking a nap right now - in a chair in the same room.  If he were elsewhere, she'd be worried.  As it is, she's making fun of his napping (snoring).  Each time (every 30 - 60 seconds) it's a new revelation.

 

I wish she could forget some of her made up horrors she keeps telling me about (sigh) - all about people breaking in or threatening her or being mad at things she did or similar.  Those are her "tried and true" repetitive stories.

[creekland]

 

2. FIL may be in good health now, but that can change in a second. 

 

This is definitely one of our major concerns.  

 

Her having lost any sense of current memory is another, because he can just be in another room and she's wondering where he is and starts looking for him.  The poor guy can't get time to himself.

 

This latest part has come about only in the last month or two.  I started to see her fear the last time we were here and they left, but then she trusted me so it worked out.  She got really agitated, but didn't have to go look.  Now even when I'm here she can only take my explanations for a little bit, then insists upon getting up to "go look."  If they left for a few hours (like last time), I'm honestly not sure what she would do.  I might have to put her in the car to "help look" by driving her around.

 

It's a "new" one for FIL to handle and I think he's starting to realize it's not temporary.  It's new to both hubby and I, so I'm gleaning thoughts from the Hive.  I really appreciate those of you who have BTDT sharing.  Thanks folks.

[creekland]

Ugh.  We might have an even more serious problem soon.  FIL and hubby just went out for the mail.  MIL asked a few times where they were, but was satisfied with my answer.  However, when they came back they walked around in the yard we're looking out over checking for storm damage.  MIL didn't recognize either one... and didn't believe me when I told her who they were - more than once.  She was only satisfied when she heard FIL's voice talking.

 

She's not recognized hubby before - or thought he was FIL (he looks like him from an earlier era), but this is a first (that I know of) for FIL.

 

How long before this becomes "the new normal?"  She's NOT stressed at the moment.  On the contrary, she'd been excitedly (and "secretly") telling me the results of her trip to the bathroom until moving on to this.

 

Things seem to really be moving downhill more quickly than before - or is it a phase?

Edited September 3, 2016 by creekland