New Here and Looking for Support

beebee13

 This is my first post, not only to this message board, but any message board. I realize there will be little left of me if I don't seek guidance about how to cope with the watching a LO become lost. My mother isn''t formally diagnosed, or at least I don't think she is--as the neurologist said, there's a high probability that she has Alzheimer’s--she panicked during the brain scan so imaging was limited. Her local doctor, I'm sorry, but I'm saying it...is USELESS. After a long wait, I finally got her switched to my doctor, but will not be seen until July. After calling her doctor''s office every week to get a referral to the Geriatrics specialist, we finally have an appointment in May. There's the appointment/diagnosis side of things, but then there''s the day to day. She lives alone in a giant house just 200 yards away from me--even that seems too far to make sure she's okay sometimes. We live in Maine and it''s been cold and she has hardly been out of the house unless I take her. But, with warmer weather she starts to move about. Her gross motor skills seem all messed up, walking is now shuffling and she falls a lot. She knows me still. However, her reality is a remix of past events. Lately, she's been looking for my dad who died 5 years ago. Her mother too. She often thinks there are people staying with her who haven't come home. She's wearing the most random outfits that cause me to giggle until I pause and look at all the piles of clothes all over the house that will never get washed again unless I do it for her. She is losing weight and has become so small. I bring her easy to make food and buy groceries for her. Even so, fresh food becomes rotten and she eats things that are expired and likely growing new appendages. I often just throw everything out and start fresh. Oh, and she likes her wine...that's just a whole different problem when you're already losing your mind. 

I am a mother to two incredible boys. One of my boys is in college, the other has one more year before leaving the nest. There's the empty nest sadness about my kids leaving, but there should also be joy. However, the nest will be occupied by my mom now. I am overwhelmed. I am the executive director of  a really busy organization. There's not a lot of time for me in my own life. So, here I am rambling to total strangers. Ready to cry. I feel like I need to take several weeks off work just to make phone calls to figure out what support is out there. Can her insurance pay for house visits? I don't want to put her in a home --she's not there yet and I am so tired of everyone telling me to send her away. Will there be support for her without bankrupting her at the same time? I plan to move in to her house in the fall--will I lose my mind too? We live in a small rural community, resources are limited here. So, for the first time, I have joined a message board. 

toolbeltexpert

Beebee13  I don't have any advice cause I live in Tennessee, I want to say welcome and your doing a great job. I live with my dw and sometimes I don't recognize the food growing appendages. You made me laugh. There will be many others to offer some great advice. Hang in there you sound very capable having raised 2 boys. We all need each other. On another point I moved south fro MA in 93 our other choice was Maine but warmer is better. Trees are leafing out now. Humming birds will be here shortly. Things we look forward too. Keep posting

May flowers

Welcome, BB13, sorry for the reason you’re here, though.

My FIL was near the same level your mom is (maybe better in some areas and worse in others, as he wandered) but MC was fine for him. There were folks there in less advanced and more advanced stages. It was great for him while it lasted - they kept them busy, safe, and he made friends. 

If you want to keep her home, in-home caregiving is a good option too. Both options are pretty expensive though. I don’t think insurance covers this unless she has long term care insurance. Others here will chime in on that I’m sure. Are you planning on keeping your job if you move in with her? Just asking because caregiving is exhausting and I can’t imagine doing both without help. Is there any way she can move in with you and use the money from selling her house to pay for her care?

harshedbuzz

beebee13 wrote:

 This is my first post, not only to this message board, but any message board.

Hi and welcome to the best group nobody ever wants to join. I am sorry for your reason to be here, but glad you found us.

I realize there will be little left of me if I don't seek guidance about how to cope with the watching a LO become lost.

Everything associated with dementia is difficult. Sometimes day to day, or even hour by hour, is how we get through it. 

My mother isn''t formally diagnosed, or at least I don't think she is--as the neurologist said, there's a high probability that she has Alzheimer’s--she panicked during the brain scan so imaging was limited. Her local doctor, I'm sorry, but I'm saying it...is USELESS. After a long wait, I finally got her switched to my doctor, but will not be seen until July. After calling her doctor''s office every week to get a referral to the Geriatrics specialist, we finally have an appointment in May.

There's another critical piece you haven't mentioned. Is there legal paperwork in place to allow you to act on her behalf? Are you her POA for both medical and financial decision-making? Has she signed the HIPAA forms that would enable doctors to communicate with them directly even if she's not there? If not, these are steps to take now by seeing a certified elder law attorney. If you don't and the attorney deems her too impaired to sign, you may need to go the guardianship route which is more time consuming and costly. 

National Elder Law Foundation (nelf.org)

There's the appointment/diagnosis side of things, but then there''s the day to day. She lives alone in a giant house just 200 yards away from me--even that seems too far to make sure she's okay sometimes. We live in Maine and it''s been cold and she has hardly been out of the house unless I take her. But, with warmer weather she starts to move about. Her gross motor skills seem all messed up, walking is now shuffling and she falls a lot. She knows me still. However, her reality is a remix of past events. Lately, she's been looking for my dad who died 5 years ago. Her mother too. She often thinks there are people staying with her who haven't come home. She's wearing the most random outfits that cause me to giggle until I pause and look at all the piles of clothes all over the house that will never get washed again unless I do it for her. She is losing weight and has become so small. I bring her easy to make food and buy groceries for her. Even so, fresh food becomes rotten and she eats things that are expired and likely growing new appendages. I often just throw everything out and start fresh.

It sounds as though she has progressed well into the middle stages of dementia (or perhaps further along than that) from your description. It may be time to include her in dinner to be sure she's eating a balanced diet.

Stages of Dementia Dr. Tam Cummings

Oh, and she likes her wine...that's just a whole different problem when you're already losing your mind.  

What does that look like? Are you a non-drinker talking a nightcap or are you suggesting her short term memory loss has made it impossible for her to keep track of how much she's had because she doesn't recall her last glass leaving her to routinely get pass-out drunk routinely?

A few of the symptoms you describe could be related to an alcohol-related dementia (ARD) which is not always something a neurologist would look for in a little old lady who is old enough to have Alzheimer's. While these symptoms do occur with other dementias- the gait/steadiness issues and "mixed up events"(confabulations- when a person recalls parts of a story and backfills the holes with random details from other unrelated events) are hallmarks of Wernicke-Korsakoff's Syndrome which comes from a deficiency in Thiamine. Treatment with IV Thiamine and abstinence can improve cognition considerably if caught in time. 

My dad had mixed dementia- WKS and Alzheimer's. I'm sure there was a little vascular stuff in the mix, too. What you are describing is very familiar. Other things you might see would be a lowered tolerance for cold, poor spatial reasoning skills (this can contribute to falls) and perhaps some vision or eye-movement issues.

If her neurologist or former PCP hasn't run blood tests for this, it might be worth asking about as this is somewhat treatable. That said, dad's levels weren't awful, but his PET scan clearly showed a glucose pattern uptake consistent with WKS. 

I am a mother to two incredible boys. One of my boys is in college, the other has one more year before leaving the nest. There's the empty nest sadness about my kids leaving, but there should also be joy. However, the nest will be occupied by my mom now. I am overwhelmed. I am the executive director of  a really busy organization. There's not a lot of time for me in my own life. So, here I am rambling to total strangers. Ready to cry. I feel like I need to take several weeks off work just to make phone calls to figure out what support is out there.

Can you take FMLA to work on tying up loose ends and come up with a plan?

 Can her insurance pay for house visits?

What are you seeking from the home visit? Are you looking for a doctor to make house calls? Maybe, they are available in some places. Or are you seeking some sort of home health aide or hired caregiver? If she has a long-term care policy she might qualify for some visits. If she's a veteran or widow of a veteran, she might qualify for Aid & Attendance which would give her a few hours of care/support at home. 

I don't want to put her in a home --she's not there yet and I am so tired of everyone telling me to send her away.

I am sorry. That's hard to hear. Do you have a line in the sand that would trigger placement? For some families- especially when the caregiver is working and the lone caregiver- that can come with behaviors like wandering, sleep disturbances, incontinence or resistance to care- especially medication and hygiene. 

Will there be support for her without bankrupting her at the same time?

Maybe not. Her assets should be used to provide care for her. This is a reason to consult with a CELA as I suggested. A local CELA will understand the Medicaid process in your state and will have details about how much she needs to spend down in order to qualify for Medicaid and whether Medicaid has a program in ME that would offer her the option of receiving a set number of caregiver hours in the home in lieu of being placed in a facility. Not all states have this option. There's also a Medicaid loophole that allows for a live-in child who has provided care in the home for a set period of time to inherit the house on the passing of the PWD to inherit the home without repaying Medicaid. You'll want to ask the CELA about that, too. Do you own your home or is a part of a larger family parcel? Would it make sense to move in with her now and rent your place to help offset care costs? 

I plan to move in to her house in the fall--will I lose my mind too? We live in a small rural community, resources are limited here. So, for the first time, I have joined a message board. 

It's hard to say. I would. But patience is not a virtue I have in abundance. Especially not during a cold, dark Maine winter with a PWD. YMMV. 

HB

caregiving daughter

I have not read the other replies so I am sorry if I am duplicating. I just wanted to say that you are absolutely doing the right thing by picking up your head and thinking long term. I ran after what seems like one-time issues for so long until I realized I needed a long-term plan. You may need a week to make calls and set up the needed support system. You do have some critical years with your children and you do have an important job. Your parent is also a safety concern. You don't though have to do all this on your own. You can do this. Hug your parent and be there for those beautiful boys. To support my mom, I lost a lot of time with my growing children that I will not get back. We are all just doing our best.

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The user and all related content has been deleted.

Iris L.

SAFETY is a priority.  PWDs (persons with dementia) lose awareness of safety concerns.  From what you have indicated, it does not sound safe for her to be alone.  It will help you to read the online reading material, Understanding the Dementia Experience. Also learn about anosognosia, which is unawareness of having dementia.  She probably tells you she is fine and doesn't need a doctor or any help when you ask her.  This is what they do.  The main website www.alz.org, has a home safety section.  Keep notes of what you observe so you can relay to the doctors.  Take video if you have to.

Iris L.

beebee13

harshedbuzz wrote:

beebee13 wrote:

 This is my first post, not only to this message board, but any message board.

Hi and welcome to the best group nobody ever wants to join. I am sorry for your reason to be here, but glad you found us.

Thank you for this incredibly thoughtful and detailed reply.  It really means a lot. 

Everything associated with dementia is difficult. Sometimes day to day, or even hour by hour, is how we get through it. 

It's so much more trying than I would have ever imagined and I have heard some horror stories.

There's another critical piece you haven't mentioned. Is there legal paperwork in place to allow you to act on her behalf? Are you her POA for both medical and financial decision-making? Has she signed the HIPAA forms that would enable doctors to communicate with them directly even if she's not there? If not, these are steps to take now by seeing a certified elder law attorney. If you don't and the attorney deems her too impaired to sign, you may need to go the guardianship route which is more time consuming and costly. 

Luckily all the critical paper work was completed two years ago. She doesn't remember that it was, but luckily each of what you've mentioned is in place.

It sounds as though she has progressed well into the middle stages of dementia (or perhaps further along than that) from your description. It may be time to include her in dinner to be sure she's eating a balanced diet.

Yes, I do need to spend more time eating with her. I try to have meals a couple times a week with her and sometimes she's licking the plate clean--obviously hungry.  I am at her house once or twice a day and make sure she has what she needs, but clearly it's not enough to just provide necessities. 

Oh, and she likes her wine...that's just a whole different problem when you're already losing your mind.  

What does that look like? Are you a non-drinker talking a nightcap or are you suggesting her short term memory loss has made it impossible for her to keep track of how much she's had because she doesn't recall her last glass leaving her to routinely get pass-out drunk routinely?

I'm not a non-drinker, but I think that little old lady could drink me under the table--but believe me, I'm not trying to confirm that! I think you've hit the nail on the head, she forgets and loses track.  It seems totally plausible that I am also dealing with ARD (I am learning a lot of abbreviations!). 

A few of the symptoms you describe could be related to an alcohol-related dementia (ARD) which is not always something a neurologist would look for in a little old lady who is old enough to have Alzheimer's. While these symptoms do occur with other dementias- the gait/steadiness issues and "mixed up events"(confabulations- when a person recalls parts of a story and backfills the holes with random details from other unrelated events) are hallmarks of Wernicke-Korsakoff's Syndrome which comes from a deficiency in Thiamine. Treatment with IV Thiamine and abstinence can improve cognition considerably if caught in time. 

I will absolutely look into this, again makes sense. 

My dad had mixed dementia- WKS and Alzheimer's. I'm sure there was a little vascular stuff in the mix, too. What you are describing is very familiar. Other things you might see would be a lowered tolerance for cold, poor spatial reasoning skills (this can contribute to falls) and perhaps some vision or eye-movement issues.

Her house is like a sauna. Spatial reasoning skills sounds accurate. 

If her neurologist or former PCP hasn't run blood tests for this, it might be worth asking about as this is somewhat treatable. That said, dad's levels weren't awful, but his PET scan clearly showed a glucose pattern uptake consistent with WKS. 

On my list. 

Can you take FMLA to work on tying up loose ends and come up with a plan?

I will need to. So overwhelming. 

What are you seeking from the home visit? Are you looking for a doctor to make house calls? Maybe, they are available in some places. Or are you seeking some sort of home health aide or hired caregiver? If she has a long-term care policy she might qualify for some visits. If she's a veteran or widow of a veteran, she might qualify for Aid & Attendance which would give her a few hours of care/support at home. 

Right now, I would appreciate companion visits coupled with some of the basic caregiving that falls through the cracks with my work schedule. I have to go out of town frequently with my job, which is becoming unrealistic too.  I'm looking to fill in the gaps when I'm not around. 

I am sorry. That's hard to hear. Do you have a line in the sand that would trigger placement? For some families- especially when the caregiver is working and the lone caregiver- that can come with behaviors like wandering, sleep disturbances, incontinence or resistance to care- especially medication and hygiene. 

My mom, for decades, has talked about never wanting to be in a "home." There's a part of me that wants to honor her wishes.  Clearly, I need to accept there will be a time when she may not even remember me, but there's apart of me who can't get over what would feel like a betrayal / abandonment. 


Maybe not. Her assets should be used to provide care for her. This is a reason to consult with a CELA as I suggested. A local CELA will understand the Medicaid process in your state and will have details about how much she needs to spend down in order to qualify for Medicaid and whether Medicaid has a program in ME that would offer her the option of receiving a set number of caregiver hours in the home in lieu of being placed in a facility. Not all states have this option. There's also a Medicaid loophole that allows for a live-in child who has provided care in the home for a set period of time to inherit the house on the passing of the PWD to inherit the home without repaying Medicaid. You'll want to ask the CELA about that, too. Do you own your home or is a part of a larger family parcel? Would it make sense to move in with her now and rent your place to help offset care costs? 

Luckily, I do own her home. But the spending down part is something  I am not familiar with and will ask the lawyer about this week. And, yes, what am I waiting for?  I just need to deal. I can see one benefit to this forum already...moving past denial and into action. While legally things are in place, there is a lot more day to day issues that need to be addressed by me. 

I plan to move in to her house in the fall--will I lose my mind too? We live in a small rural community, resources are limited here. So, for the first time, I have joined a message board. 

It's hard to say. I would. But patience is not a virtue I have in abundance. Especially not during a cold, dark Maine winter with a PWD. YMMV. 

Nailed that too, it's been a loooooooong winter. 
HB

Thank you, HB. So much. For taking the time to respond and with such clarity. 

Barbra 

beebee13

Thank you, Iris.  I appreciate your response so much.  I recently took a gun from her house that she has always had for "her protection and safety." She hasn't noticed and hopefully never will.

She barricades herself in her house too. There is so much paranoia.  It's just so sad to witness and at times scary. 

Again, thank you. 

Barbra

beebee13

Hi, 

There are behaviors that make me laugh for a moment, but then I am encountered with the harsh reality of the road ahead. Thank you for responding to my post. I can see how this is a helpful place to find support. 

And, yes, it's cold in Maine. I am looking forward to summer!

Warm Regards, 

barbra

PlentyQuiet

I agree with the others about making sure all legal and financial matters are squared away first.

But I also have children the same ages as yours. I'm struggling to balance their needs, my needs and my DH's needs (EOAD).  The situation is awful, overwhelming and sad. Everything you are feeling is appropriate to what you are going through. 

I found talking with a therapist to be helpful. They can't solve my situation, nor do they have a magic wand to make me a different person. However to have a person who cares about me and my needs first, and will not judge anything I say is a great pressure release valve in my life. 

I'm sorry you have so much on your plate, and you do have a lot.

MN Chickadee

Safety has to drive the decisions. And you matter too. Your life, retirement savings, physical and mental health have to come int play as well. Becoming a full time caregiver is an enormous responsibility, and if there are no resources in your area (adult daycare, aides you can hire to come in etc) then working a job will be nearly impossible. Most people who keep a PWD home have one or more things going for them - resources in the area, enough money to hire in home care and modify the home as needed to be handicap accessible, and/or lots of extended family to pitch in. It sounds like whatever dementia is affecting her has progressed to the point where she can't be left alone. If it's not the rotten food it will be something else. A fully functional kitchen and all the rest of a home's appliances are not going to be safe for long. She will not remember how much wine she has had tonight and pour another.  She will not remember which medication she took and skip it or take two. A tube of ointment will get mistakenly put on a toothbrush. There are a million and one ways for a PWD to get into trouble left alone in their house. It really does sound like she is close to the point of needing 24/7 care. If she has long term care insurance (a separate kind of insurance she would have had to purchase long ago, like life insurance) it may pay for some care in the home but generally health insurance and medicare do not cover any of this. You will want to see an attorney in your state who practices elder law, they can help with financial planning for care. Medicaid differs by state and what it covers. She would need to spend down assets to qualify, and they attorney can tell you what medicaid will cover. In some states it covers some in home care hours, in others only in a facility.  

I totally respect your sentiments on moving her to a care facility. Just wanted to play devil's advocate so you get some other perspectives. We had great experiences with long term care, and many do. It has changed so much since our grandparents were in nursing homes. My mother's facility was homey and sunny with activities and very kind staff and music and pets coming in. The medical oversight by the nursing staff was so much more than we could have provided at home. Most PWD thrive on routine. Groundhogs Day every day. It looks depressing to us outside looking in but it's usually what their brains want. My mother really thrived on the structure and routine of MC. When still at home she fretted constantly over every day stuff. The mail, feeding the pets, what we were cooking, the closets full of stuff. She was an endless ball of stress, tearing the house apart, suspicious and overwhelmed by daily life. All that went away in MC and her anxiety went way down after the adjustment period. Just routine routine routine. The simple life where she could put all her brain power towards our visits or an activity. Nobody WANTS to go to a home, but sometimes it is the best thing we can do for our loved one given the information and resources at hand. 

Have you called either the Alz hotline or your county's agency on aging? Both should have lists of resources in your area. That and a visit to an attorney will hopefully start to help you figure out next steps. 

mommyandme (m&m)

When my mom needed in home care, she was in a different state than both my brother and I, we hired help to come in the am and pm, split shifts to check on her and help her with meds and meals, getting dressed for the day and for bed.  Then we upped those shifts so someone was there 8 hours a day but still splitting it 4 and 4.  Then the happy news of 24/7 was needed.  My brother and I weren’t ready for that, the neurologist said that cameras could work for 24 hour supervision when caregivers weren’t there.  That actually worked well for a short time until she needed someone there at all times.  We eventually moved her by me in her own house, basically in my backyard.  

Long story short, the cameras are invaluable and I still use them even though I’m right here and mostly live with her.  When I was in a similar position as you I got them up and running.  They don’t need to be expensive.  We have four running all the time.  My brother can also check in on his momma.  Even if you have in home caregivers, the cameras still add a level of safety.  

I’m so sorry you are in this with all of us here, I do hope you can find some peace and ease your mind soon.  

harshedbuzz

beebee13 wrote:

It's so much more trying than I would have ever imagined and I have heard some horror stories.

Stories can only prepare you to a certain degree. Dementia caregiving is more of an experiential learning experience. One of my dear friends was taking care of her mom w/dementia when my dad (and 2 of my aunts) were going through the middle and later stages. They were all over the place. What struck me was how much personality persisted well into the later stages. My friend's mom was pretty tractable although she liked to go "walkabout" in the wee hours. My older aunt was the nasty and arrogant beast she'd always been while her younger sister remained a delight to be around-sweet, funny and beautifully mannered. My dad? When I shared with our long time mechanic that dad had dementia he let out a long, low whistle and said "Father Buzzed with dementia? Oh man, that's got to be something else."

Luckily all the critical paper work was completed two years ago. She doesn't remember that it was, but luckily each of what you've mentioned is in place.

Wonderful!

Yes, I do need to spend more time eating with her. I try to have meals a couple times a week with her and sometimes she's licking the plate clean--obviously hungry.  I am at her house once or twice a day and make sure she has what she needs, but clearly it's not enough to just provide necessities. 

Feeding is hard. Many PWD find their palates change and foods they used to enjoy end up on the no-fly-list. Often sweets are preferred over- and to the exclusion of- savory foods. Sometimes they forget to eat or believe they already have. 

I will absolutely look into this, again makes sense. 

Good idea to mention the alcohol consumption. This isn't always on a doctor's radar, especially if the person presents well. Whe dad was initially on the verge of psychosis the first ER to which mom took him never considered an ARD. They cleared him for stroke and did no blood draw. Let him know how much she's consuming. Is there a way to limit the amount she gets? Are you the one buying the wine (no judgement- I know how hard it is to get between someone who drinks this heavily and their preferred beverage to say nothing of the risks of a DIY at-home detox). Several folks here suggested watering down dad's wine or subbing an alcohol-free version. Alas dad's brain was broken- not his palate but it was still worth a try. 

Her house is like a sauna. Spatial reasoning skills sounds accurate. 

Ugh. The sauna-days. I woke up one morning at his MD place in July to find he'd set the heat for 85F. (this is seen in other dementias, too). Dad once had an argument with me because I refused to park all 3 of his cars in their one car garage- he swore he could do it if I just would let him have the keys. His cars looked like they'd been in the demolition derby.

So overwhelming. 

 Right now, I would appreciate companion visits coupled with some of the basic caregiving that falls through the cracks with my work schedule. I have to go out of town frequently with my job, which is becoming unrealistic too.  I'm looking to fill in the gaps when I'm not around. 

Companion care isn't covered by any health insurance. The VA A&A program might offer something if she qualifies as a vet or widow of a vet who served in war-time. Some states do offer vouchers to people who are low income. A day program could be subsidized in some places. Otherwise care costs should come out of her assets. A CELA or your Area Agency on Aging might know more specific to your area. 

My mom, for decades, has talked about never wanting to be in a "home." There's a part of me that wants to honor her wishes.  Clearly, I need to accept there will be a time when she may not even remember me, but there's apart of me who can't get over what would feel like a betrayal / abandonment. 

"Homes" today aren't necessarily the same as what your mom railed against. My dad carried on about this as well. In fact, he purposely avoided any kind of legal and/or financial planning that would have made easy. I still made it happen when it became necessary. 

There can be some real positives to a well chosen MCF. Trained staff who get 16 hours a day away from dementia caregiving. Social opportunities. Failure-free activities for entertainment. A chance for you to be her daughter instead of nagging, policing and changing diapers. 

Luckily, I do own her home. But the spending down part is something  I am not familiar with and will ask the lawyer about this week. And, yes, what am I waiting for?  I just need to deal. I can see one benefit to this forum already...moving past denial and into action. While legally things are in place, there is a lot more day to day issues that need to be addressed by me. 

You don't have to spend down your assets for her care. If she is spent down or a trust set up to cover cost, she might qualify for Medicaid down the line. Ask the lawyer to explain how it works in ME. 

 

 

Nailed that too, it's been a loooooooong winter. 

My father used to say he spent a summer in Maine one weekend. My lovely younger aunt spent summers and retired mid-coast. My mom's family were from further north. But yeah- winters are brutal. 


HB

SusanB-dil

Hi BeeBee - welcome to 'here'.   I agree with so much excellent advice already posted.  

just want to add about the heating issue.  We had to put a cover over the thermostat - the type you might see in an office or a school. It is clear with a lock. A local 'big' hardware store may have them, and I know Amazon does.   Woke up one morning and it was almost 90 degrees.  Less than a week later, we heard the heat running and running.  She had put it on 'emergency heat'.  DH placed the cover on while she was at the other end of the house one day. It took less than 5 minutes.  She then gave it a dirty look and looked at him.  We told her "it was a fire-safety issue and the insurance company said to protect it". (whatever is said, we tried to make it sound at least somewhat believable, but doesn't necessarily need to make 'total' sense) She simply threw up one hand and said 'whatever!'. She is used to it now, and the heat cannot be turned up to 90 again, nor inadvertently flipped to emergency heat.

May flowers

SusanB, I wish we had though of that for the thermostat. We installed a smart thermostat that DH could change remotely with his phone whenever my FIL changed the temp too high or low

JJAz

Based on what you've described, your Mom may qualify for Hospice (don't panic) and they will send bathing assistant and nurse out at least weekly.  Easy to start.  You don't need a referral.  Just call the hospice provider of your choice and they will come out for an assessment.  If you don't like that particular hospice, call a different one.  Dementia patients often end up on Hospice care for a couple years.  One friend's husband was on hospice for AD for 5 years.  They can be a great help in coordinating other services that you need and pointing you in the direction of good private-pay caregivers.

M1

BeeBee, I also say welcome to the forum.  I am in the middle of a bad psych hospitalization for my partner and having to finally seek MC placement after not recognizing me and threats of aggression.  It's a very hard decision to make.  But I'm struck that you say she's "not there yet"--with all due respect, in all probability from what you're describing, she's very much there.  You're just too close to see it.  As I was, too.  Most of us who live with it day to day tend to overestimate our LO's abilities and underestimate how far along in the disease process they are.

I am coming around to the realization that MC may actually very much benefit my partner because of the simplification of the environment, as well as the engagement activities that may be available.  Go visit some memory care units near you.  She may actually do better in a dementia-friendly environment than she is currently doing at home.  Don't underestimate that possibility; you are not doing this "to" her, you are doing it "for" her.

Good luck.  You couldn't have come to a better, more supportive group.  It's by far the best thing out there, I have found much more support here and more extensive information than anywhere else.