Just stunned

M1

I know I shouldn't be surprised by it,, but the rapidity of decline here in the last few weeks is really amazing.  The inability to recognize me by name and as a family member has gone from a rare surprising thing to a constant.  On Sunday she took my wallet while I was downstairs on the treadmill; so now I've hidden it.  today she went into my closet while I was working in the kitchen (not 20 feet away), pulled some old boxes out, and then asked me who all this stuff belonged to and how should she get it back to them.  She is getting more lost in time, saying "this is a nice house, I built it two or three years ago, but you weren't here then were you?" (The correct answers are that we've been together for 27 years and in this house for 13).

The need for a lock on my bedroom door for my own boundaries and a companion supervisor are becoming urgent. I can't keep her out of mischief, she does things I just can't predict. Last night it was opening the dishwasher in the middle of its cycle to take out the coffee pot and rearrange all the plates. She could have both burned herself and flooded the kitchen. I'm very fortunate that she doesn't ever fool with the stove or my computers, but it makes me worry.

Anyone else's spouse get into your own stuff and papers all the time? I've locked up the medications and hidden my wallet (inconvenient), but when it comes to my closet, bills, paperwork etc. it just feels overwhelming.  I haven't found a way to keep her occupied and out of trouble.  Too much opportunity on this farm as a whole I think.  That may be what ultimately requires placement or 24/7 supervision.

Vitruvius

My DW is constantly into mischief if I'm not directly engaged with her. Rummaging through everything in the house. I've taken to locking up my wallet, keys, checkbooks, meds, etc, not because she would use them but because she will put them somewhere else and it can take me days to find them. Even when I leave her for a short time to use the facilities, I hear her starting to go around the house. Her latest thing is collecting things and putting them in the back seat of the car because she needs to take them somewhere. This includes virtually any random object small enough for her to pick up.

This along with her failure to recognize me as her husband and her many daily delusions also has me investigating MCFs. I am torn between my desire to keep her with me and safe and happy and the fact that needing to attend to her every waking minute is stressing me out pretty badly. I do have some day care for her which for now barely keeps me from a stress related heart attack. 

Joydean

M1, sorry I don’t have any experience with what you are going through. My DH has no interest in where anything is located. He can’t find the plates even when it’s right in front of him. When I show him he just says oh I know that. It has nothing to do with eye sight because he can see a piece of lent on the floor. He has no idea what the dishwasher is or what’s in it. So for he doesn’t get into anything. He just ask me where this or that is. I don’t know which is worse, getting into things or not even looking for something’s. 

I hope you can get some help soon.  

jmlarue

As a follow on to M1's comment about the surprisingly rapid decline in his DW -  is this common in the late stages of dementia? I ask because my perception is that the rapid decline in my DH has seemed quite rapid, as well. I can't help but wonder if this is natural or could prescription meds be contributing to the speedy decline? I've been concerned enough to schedule a phone consult with his geri-psych tomorrow to discuss it.

Jo C.

M1; I am sorry for the situation and the challenges that have become more complex; it must be exhausting. It can be so hard to know what is best to do.  As for personal experience regarding a LO getting into personal papers, other belongings, appliances, water, danger, etc., etc.  Yes; those became onging problem issues that were persistent, grew, and sometimes had consequences.  It extended into closet plundering including even clothing.  (That one is a two beer story.)

Unfortunately, LO got into files when we were sleeping, or when in the shower, or other times.  She was fast.  Lost quite a few very important documents in one fell swoop and never, ever could find them despite the house being in good order.  That may have been done during the night when LO could access files that were not locked.

One of the other items plundered were the photograph albums; treasured old photos disappeared - gone forever.  If a wallet, or handbag or other personal items were within range, (she sought things out), those items were also gone through; sometimes with a negative outcome. Driver's license lost, credit card disappeared.  Mail was also a problem issue that had to be dealt with.  Again, negative activity done in a very short amount of time when out of line of sight for even a very short time, despite striving to keep good oversight. Even taking time to use the bathroom became a race.

Tried hiring a care person; that presented new challenges for awhile.  I am skilled at doing good, detailed interviews.  I strove to find a good, experienced care person to meet the needs as they were. The first two aides/companions hired had experience and interviewed well.  However, they were beyond dreadful and in actual practice were disappointing to a huge degree despite how they had interviewed; shocking in some instances.  Checking recommendations was really not helpful in reality.   It took time to realize what had been happening despite working with them; ongoing issues became significant.  After time passed, the third person hired was excellent; highly experienced, with high personal performance standards for herself; a lovely, caring personality who was much better at working with the challenges of dementia. Very professional as well as personable.

Despite this excellent person, the LO balked and balked and threw tantrums at anyone helping.  Behaviors ramped up and the challenges were cropping up for every single second of every hour of every day.  Over time, home was no longer working well as the disease became even more of a complex set of challenges on a 24 hour continuum.  An alternative living setting eventually became the only option.  I had never wanted that to happen, but it had become unavoidable in the sad extreme.

Despite a person sharing their feelings with you regarding their take on the care facility you have been looking at; that is one person's personal assessment that may not be your experience whatsoever.  I would suggest going and visiting the facility again, as well as meeting with the management staff being up front with questions.  Getting more familiar with the setting may be helpful.  If placing a deposit to gain a bed; why not do that IF you can get your deposit back if you decide not to place. 

NOTE:  Whatever you decide, the placement is not carved in stone. You can reverse course any time you wish.  It also takes time to adapt to a new care setting, not only for the person being placed, but also for the family members. One must give it time; I had to learn that and it was for the best.

The idea of a person to provide care oversight and living in the farm/ranch out building, is one that sounds perhaps doable in being acceptable for you, but that too can be fraught with difficulty.  Resistance, refusal and acting out by a LO is only one issue.  If it does not work out, you have a person living on your property in that little "house," and it may be much more difficult to sort out  if it appears the person or situation is not working out.  That can present different difficulties and be harsh for the person who gave up where they had been to come and live on your property as well as you continuing to be involved much of the time.  It is good you are getting legal advice re that approach.

For many of us, there is no perfection in all of this; there is only what one can do under the circumstances with the unique challenges at hand which are more complex due to the setting you live in.  Wish there were a way for this to work out perfectly with that knowledge beforehand; you will not know until the help is put into place in either approach.  The only thing that seems certain, is that you have reached the point at which neither of you is best served by further delay.

I so wish there were a way to have this be easier for you.  I so hope that whatever approach you decide upon, that it works out very well and brings peace to both yourself and your partner. Sometimes, a LO benefits by the changes in circumstances, but that is of course cannot be known until one has put the interventional approach into place.

There is deep respect for you in all you have done and in how you are doing your very best to ensure the optimum outcome for your LO under the circumstances.

J.

Crushed

I know its a PITA (Been there done that) but you do yourself no good to call it "mischief"

They are trying to make sense out of a world that no longer makes sense

 "setting boundaries"  is also psychobabble when dealing with dementia 

DW started wandering which with psychosis led to placement in MC

 

Rick4407

Hello M1,  Sorry to hear about your latest frustration.  I'm in the same situation but have taken a different solution.   I now have a "live in" housekeeper.  She is responsible for all the misc things that keep a home going.  (Vacuuming, dusting, general picking up, bathrooms, etc.) She has a traditional job outside the home during the day.  This allows me to focus completely on my DW.   Together, my DW and I, do just about everything else: laundry, cooking, shopping, some very light yard work, etc.)   There are some things that just don't get done, home maintenance for example.   

It is quite frankly exhausting and there are still moments everyday when my back is turned that my DW's gets into mischief.  The outside work, lawn care for example, also get done by someone I hire on an hourly basis.  For those things that I need to do personally, pay bills, manage our finances they are all done while my DW sleeps.  Fortunately she sleeps about 12 hours per day so I have several hours to myself. 

I will say again, keeping up with my DW is mind numbing and exhausting.  Rick  

Ed1937

M1, I'm so sorry it has come to this. As you know, this is not sustainable for any length of time. I'm sure you have thought of many options, and I hope you find something that works soon. It sounds like you need help NOW.

​NorthWoods

I wish I had a simple answer.  My husband would stay on a plateau and then drop dramatically.  There was/is no way to predict it.   Please be very careful and don’t delay finding help.  My husband went from what you describe as “mischief” to seriously dangerous stuff in a blink.  One day he was unloading dirty dishes from the dishwasher, the next he lit all the burners and then left the house.  One week a neighbor walked him home from down the block, the next the game wardens brought him back from several miles into the woods.  And on it goes.

The alz.org site has some excellent checklists and guidance and safety and wandering. I encourage you to take a look at them. But even with all of that, I finally realized that, even with part time help, I couldn’t keep my husband, or myself, safe. 24 hour supervision became essential and no one can do that alone.  Please take care of yourself. 

jfkoc

Any rapid change begs for a UTI test. Please get this ruled out as cause.

Regardin your computer/papers/stove...they will likely be next anong with the freezer/frig left open.

"Child proofing"  would be good along with installing some hook and eye latches either hig or low on doors.

 One last purchase, some kind of alarm that lets you know when she gets out of bed.

added; remove knobs from stove,

abc123

Dear M1, I'm so sorry to hear this. I wish I lived close to you. At the very least, you could throw eggs at me to relieve some built up stress.

My experience with the digging and tearing through things was short lived, Thank God! My LO did this at night when we were asleep. It would happen at their house in Texas and at my house. My LO was at my house many times through out this journey. She always knew who I was though. It happened a few times in Texas that she had been tearing thru the house and eventually worked her way into my bedroom and woke me up. She was crying and telling me something was wrong, what's wrong with me. It was always as if she was looking for something that she recognized, something familiar that would calm her. But nothing registered in her brain. I would show her pictures of herself with relatives but nothing registered with her. She would become more upset and scared. I would just follow her as she tore thru the house to try to calm her and make sure she didn't hurt herself. This would go on until day light. Once, at my house was really bad. Dad slept thru the entire event. By the time she woke me up she had tore thru the den and destroyed the kitchen. What woke me up was the noise from moving boxes around in a closet in the guest room. We were fortunate because as far as we know, she never threw things away like documents and mail. She would take pictures from my house to her house. I never missed anything but dad would find my pictures tucked away in random places at their house. Dad eventually locked several rooms at their house. After these events, she would sleep for long periods of time, as much as 18 hours. When a different stage started I had to tape off the bath tubs and faucets with duct tape and painters tape.

My heart goes out to you M1, I wish I could help you. As Jo C mentioned, finding the right help is time consuming and stressful. I interviewed people as if I were hiring for a position with the FBI. We are on sitter #8 for the daytime shift. I found her by word of mouth. I highly suggest calling the social workers at different hospice's near you and tell them you are looking to hire help. I am so sorry about your personal space being invaded by your LO. You are both in my heart and in my prayers everyday. Your LO is truly blessed to have you. You have us, all of us here! We care about you both! Hang in there my friend!

aod326

Hi M1. This all sounds so hard. You've managed the situation so well and it's frustrating to find things now that are somewhat unmanageable. One small thing that mostly worked with DH was to use duct tape on a few doors, placed high up, such as your closet. He couldn't work out why the specific door wasn't opening and, even though it sometimes meant he got frustrated, I was at least able to control it a little. Just yesterday, in the shower, I noticed the faint outline of some duct tape I'd used on the glass doors to stop him getting in fully clothed.

By the way, as you've seen people here say before, something may consistently not be a problem, i.e., the stove, until the first time that it is. That's not intended to be fear-mongering, just, sadly, the cumulative voice of experience.

Also, as Jo said, bear in mind that placement doesn't have to be permanent. I placed DH in August 2020 and, by January 2021 the reasons I'd placed him (aggression, wandering, plus the need for maximum socialization) had all gone away, and it was clear his time was limited. So I brought him home, on hospice, with a live-in carer, for 9 weeks. It was wonderful to have him home, to spend as much time as I could with him, even though he couldn't communicate and was in a wheelchair, then bed-bound.

Very best of luck.

abc123

Dear M1, I read thru this thread a second and third time. As someone who cares deeply about you and your partner, I have to say this to you. It's only a flash of a moment before she touches the stove or the computers. My grannie kept us on high alert due to wandering, constantly trying to leave. After she started the second fire, we had no choice but placement. The first fire was on the stove, she gathered up paper bags and put them in a pan and lit it with a match. The second fire she did the same with news paper in the outside garbage can. Thank God we were home when she did this. Your LO could start a fire in the barn. We have NO WAY of knowing what's going on in their heads. Please be safe.

M1

Yes thanks for the safety reminders, I'm well aware of the checklists.  Hopefully we'll get some things in place quickly.  I'll keep you posted.  

Love the duct tape idea.  May be the first thing to try until I can get something more permanent installed... you can never have too much duct tape IMHO.  And yes abc, you're right, with a barn and so much equipment, the possibilities for trouble on this 150 acres are long and large.  

Iris L.

M1 wrote:

 I can't keep her out of mischief, she does things I just can't predict. 

I'm sorry, but I beg to differ.  It is predictable that a person with progressing dementia will get into things, hide things, destroy things.  It is predictable that the PWD will be unaware of safety concerns and also unaware of how to respond to emergency situations.  My first interaction with board members was when wonderful caregivers responded to me and told me I should stop using the stove immediately!  This I did reluctantly, but I knew they were right, because I had been burning food and leaving the stove unattended.  I credit them with saving my life, because of what tragedy might have happened.

This is not a criticism but an alert!  Your LO is farther along than you think.  It helps to anticipate possible changes and to aim to prepare before a catastrophe.  It is not usually mentioned in the public talk about dementia, which mainly focuses on forgetfulness, but the dementias are diseases of potential catastrophes.  

Iris

Stuck in the middle

My fiancé and I went to visit the minister who was to marry us one spring day in 1967.  His wife joined us while we sat with him in his living room.  After a bit, I noticed a flickering orange light from the kitchen.  The minister lidded and moved the blazing skillet and turned off the stove with the air of a man who had done this before, more than once.  His wife sat silently with her hands folded while this was going on, as she had throughout our visit having apparently forgotten she was cooking.  

At the end of the conversation, I had an eerie feeling that I might have been treated to a vision of my future.  I married her anyway, and the "warning" is coming true.  I don't think I will wait as long as the minister to get help in her care, however.

M1, I don't see how you can PWD-proof a farm.  Your LO can do anything from eating poison ivy berries to trying to use farm and construction tools.  I think the safety of your LO may require that her movements be limited.  I think I would choose memory care placement over locking her in her room.

Changes happen quite suddenly in AD.  I think it is a function of new areas of the brain being affected and find it similar to sleeping on a staircase.  Some mornings you wake on the step on which you fell asleep, some days you have new bruises and are on a new level.

I don't think I am saying anything you don't know.  I am just nudging you to do what you have to do.

Caring4two

M1 wrote:

             but the rapidity of decline here in the last few weeks is really amazing. 

My husband was diagnosed in March of 2013 and dead by June 2017. Yes, it can progress rapidly. I know some have a long, slow progression over years. Others do the stair-step pattern and then some, like my husband progress rapidly. I could barely keep a step ahead of the changes and I’m a retired nurse! 

Toward the end, even I was looking at placement only he died before I could get that accomplished. Looking back, I know I didn’t see “objectively” how much worse he had gotten because he could still do some things well (like walking). After learning how much disease(s) were going on in his brain (brain autopsy) I’m surprised he lasted as long as he did!

Jo C.

One thing I have learned from many patients in my professional career as well as in personal life; hiring a caregiver is one thing . . . keeping them is quite another.  They too burn out, may find out the patient is not one they really want to deal with, they get ill, they need time off and sometimes, they do not show up for their assigned work shift for one excuse or another leaving the family member in difficult straits.  They are not able to keep both eyes on their patient client every single second; they need to use the bathroom and other matters arise.  Some will quit abruptly and sometimes we find that the person is not working out at all.

Doesn't mean that will happen, but it is something to put into the problem solving thought process, especially when living on a significant number of acres with barn, and other outbuildings, etc. 

May you find the best path and may there be a good outcome and may you find peace in your decision making.

J.

M1

Yep Stuck, you all are all telling me things I already know, for sure. It’s just facing that we are at this point and figuring out the path forward. At least we’re on the waiting list and the car is sold this week, those are big steps. Now for the next ones.

Rescue mom

Getting into anything and everything? Oh “heck” yeah. I’ve locked up more stuff than most people can imagine. I no longer have any remote thought there’s any place, any drawer, any room, any box—anything at all—that he will not rummage through, rearrange, lose or throw away, given half a chance. I’d spend as much time cleaning/recovering/straightening after him, as most other things combined. Don’t even mention convenience.

It’s undoubtedly much easier for me because our place is pretty small, and I do not have the need to be as far removed as you are. I basically gave up on a lot of stuff. It’s just gone, or I don’t care. My other sort-of advantage is that he is so apathetic and inactive: he just does not even try doing much. I know that can change fast. And, he either forgets what he started out to do, or loses interest very  fast. If there’s something that blocks him for a minute or two, he’ll wander off and quit trying. Like with my computer and devices, I keep them shut down and,locked. He may break them, but he’ll stop messing with them in a few minutes. As fast as your SO is changing, would it be better or worse to be like this?

I know, this is not much help for you. It’s that constant hyper-vigilance and worrying what’s next, that causes you so much harm. It’s nigh impossible to predict everything they’ll find or get into. On a farm? I can’t even start to imagine.

But I also know what Jo said. Finding a person is not easy. But keeping a good person is…..I don’t even know, it’s so tough.

M1

No your perspective does help RM. You know, part of me knows that if she dies or gets badly hurt by an accident here on the farm, so be it-she's where she wants to be and doing what she wants to do. There's enough of her fierce essence still there that i can see memory care killing her as easily as a farm accident, frankly.  If/when she loses that essence and didnt know, it would be a no-brainer to place het.  Beachfan said that made her decision easier, for example.

That farm accident almost happened July of 2020 when she got a tick fever-we never did know she'd been bitten and never did determine the exact species- and we came close to not catching it. But of course I don't want her hurting someone else (including myself) or burning the house down either, and I'm not going to not take appropriate safety precautions. It's a delicate balance. I appreciate the input here because there's precious few folks to discuss it with around here. But I won't know what help may be possible until I try. Its clear that now is the time, at least that's clear.

[Deleted User]

The user and all related content has been deleted.

Ed1937

M1 wrote:

There's enough of her fierce essence still there that i can see memory care killing her as easily as a farm accident, frankly. 

This was the first thing I thought of too. It's like walking a tight rope for you. I wouldn't want to have to make that decision. I'm sorry it's not easier.

M1

Victoria you definitely give me food for thought--would the tradeoff of a "simpler" environment help her?  I don't know, it might.  I am doing what I can to "simplify" around here--little things like the phone ringers off, intercepting the mail, blocking the news channels, not watching the evening news--you're right that she doesn't even recognize that I've done these things.  Taking away her cats and chickens would simplify some things but also rob her of a lifelong focus.  So I simplify what I can.  Walking that tightrope of taking a day at a time and trying to plan ahead, both.  

She's up, so starts another day.

ButterflyWings

M1- Sigh—rummaging, confiscating, destroying and disappearing anything and everything is a constant for DH. Some very important documents and or possessions included, early on.  It has been the bane of my existence since AD descended on us (well one of the worst things about his disease anyway). 

Redirecting those behaviors and his near constant exit- seeking consumes most of my energy and I have moved and hidden so many things as damage control, it’s anyone’s guess where to find some things I know are tucked away for safe keeping around here, by one or the other of us. Super tough. 

You need to be able to lock your room for sure. With your LO being a master builder, I realize securing things might be easier said than done. Even for my not particularly handy DH, duct tape, zip ties and more are just the type of challenge he relishes these days (Face palm emoji needed). And he is a PWD that definitely still looks up, to see how to unlock something. Do be careful with the unimagined things that could harm you both, in the blink of an eye... or that you might regret long into stage 8, in hindsight if she managed the unthinkable.  

I’ve noticed 3 different types of rummaging for DH: 

• Sometimes DH is just doing *stuff—rummaging, rearranging & relocating anything he can see or touch just for the heck of it, it seems. 
• Other times (less often now but still several times a week) he is packing random things to take with him on his daily “gotta get out of here, or head to work, or pick up (deceased) dad...). It’s so sad to see his grocery bag or a tote with a toothbrush, apple, videotape, junk mail, fork, and one time a roll of toilet paper...(before I started hiding the TP to prevent plumbing clogs). 
• Even now at stage 6d and holding, he also does what seems to be purposeful rummaging almost like research, examining papers, my mail, and would definitely still go in my wallet or bag seemingly looking for clues to who and where he is/I am etc. Based on his comments and questions he’s still not processing the info like we would, but that “fact-checking” deducing the current location and who I am based on the name & address on my mail, etc. is clearly part of what he’s doing sometimes. Maybe that’s what your DP is doing too. Sad. And not workable, either way. Sophisticated on one level and terribly sad and almost despairing at heart. 

Last thought, such great suggestions here! Lots to think about with how hard it might be to find & keep a good live-in, and that possibly you have succeeded in keeping her on the farm for the time that it really comforts her. Maybe being at a nice “hotel, retreat, sabbatical or getaway” somewhere might be a good thing to try right now?

French used respite stays to test her DP’s response (and her own) to a couple of places I recall. I’m thinking of trying that soon myself. Maybe that’s a good way to get the answers to some of the questions swirling around in your brain right now. And least you’d get a short break, and space to secure some things while she’s safe on a respite stay.

I’m so sorry this is happening. Yes indeed, fast as lightning this quicksand shifts at the drop of a dime...often with no warning. I’ve been relieved when the surprise was a welcome change, like when he spontaneously started wearing the Depends, and recently when he suddenly started waiting for & accepting my wiping his post-poop butt for him (what a life. when that is something to celebrate right?) 

Another big sigh for all of us. It does indeed stun and take our breath away. 

LadyTexan

Dear M1. I was stunned at my DH's rapid decline since January and especially his decline over the last 10 days. When DH became bed bound some risks were no longer an issue such as wandering, rummaging and destroying things. Alas, other issues cropped up. 

Changing him, keeping him clean and well fed while he is bed bound are harder than I expected. He's in a SNF until Monday and I am torn about what to do next. Is being in the SNF, keeping him safe at the expense of killing what little spirit he has left. Is bringing him home the right thing in our situation OR is it that I believe it's better for him to be home. I miss him dearly. When I visited him at the SNF yesterday, he was angry at me, just like he has been angry at me while at home.

If I bring him home, the job is TOO BIG for me alone. So I will need a strategy for helpers. And it will be expensive. 

God bless you for taking such beautiful care of your partner. I hope you can implement the solution that is best for you and your partner.

M1

BW and LT, you have both had it a lot harder than I have so far, and I have learned from you both to watch for what's probably ahead.  I appreciate your support more than you can imagine.  LT, I'll be interested to learn if (after all the hassle you've already reported) whether you deem the respite stay worth it.  Bedrails a restraint?  You've got to be kidding me.  Medicaid provides hospital beds with rails to private homes all the time.  

Anyway.  We've had a nice day today, less rummaging, and she said several times how happy she is to be here on the farm.  Time will tell, won't it.   Thank you ALL, again and again and again.  I'm going to take a weekend breather, get the Mini Cooper out of here on Sunday (that is a BIG step and she'll probably cry, but she is not fighting it), and tackle my search for help next week.  

Happy Saint Patrick's Day.  This is the day to get your potatoes in the ground....

Jo C.

By your additional input, I can see how important it is for you to keep your beloved partner at home; that is understandable and you deserve to be able to try and have it work.

You know what is best for the both of you and I wish you only the very, very best with a really positive outcome. 

Just an aside re my experience.  My LO was a strong willed person who was used to running everything within the home and garden.  That could no longer be done either physically or mentally due to the dementia damage.  My LO was a major challenge on many fronts - all behavioral that was over the moon with getting into everything, and also in lashing out; irritability, agitation, and just plain upset  . . . . in the home no matter how we tried to address and accommodate the needs.

When hospitalized a couple of times, (we were frequent fliers at the hospital), my LO went to skilled care rehab where my LO was calm, (without special meds), and had no irritability or agitation.  Wonderful I thought . . . until we got home again.   The behaviors immediately resurfaced at home each time.  One day watching the dynamics, it hit me - in the house, my LO could no longer do all the things that used to be done, and more than anything, the feeling of control was gone. When in facility care, there were no at-home dynamics in my LOs mind through the visual field.

It was quite an eye opener; when the time finally came when absolutely necessary for Long Term Care at facility level, my LO was calm again - no house or garden to see and react to because it was visually seen and the brain was trying to deal with it.  Deeply sad.

That is only one person's experience, we are all different.  Just sharing what may possibly (or not) be an issue since you have a partner who has been so strong, a professional, who was capable and put her hands to so much.  How difficult for her and probably explains her ongoing "hands-on" dynamics.

You are on your way to making the home even safer and doing what seems right for both of you  - that is important; as said, you deserve this chance.  My thoughts are with both of you.

J.