Dementia - want to read your stories and guidance

[Sibley]

Regarding the "bury your head in the sand" approach.... it's a real thing, it's common, and it absolutely sucks. It basically makes EVERYTHING harder, because it's so much easier to get a problem handled earlier than later, but denial is a hell of a drug. I don't have a solution. This is why having somewhere to vent is helpful, because at least you can get it out.

OP - you should also plan for a medical crisis involving your dad. IE, what happens when your dad has a stroke and is in the hospital/rehab for months? No, you can't predict for sure but it's also not rare. However, that's often the point at which you can actually get your mother into the nursing home or whatever.

[secondcor521]

Full time at home care was a LOT more expensive than a nursing home (I just posted numbers a few days ago... ~150/yr for nursing homes in the region, as opposed to >200K/yr for in home care).

I wonder if this is a regional thing?

I think it depends on the nature of the care required.

The tricky thing we found with my Mom was that she needed a nurse to help her with her disease (a lung disease called IPF, not dementia) but only for about an hour and we didn't know in advance when that hour would be.  Nurses are expensive, and it's not cost effective to have one sitting around at $50+/hour waiting to see if they are needed, and reading a magazine the rest of the time.

If one just needs modestly skilled caregivers, like to walk the dog, or help clean the house, or just to be a companion while the spouse runs errands, then those are much cheaper.

In the memory care place where my Dad lives, there are two caregivers per the sixteen residents in his pod (1:8 seems to be the standard ratio so I think that's probably the state-mandated minimum ratio) plus two RNs who monitor all three pods (48 residents).  The cost of those folks is spread out, and because the residents don't need the caregivers 100% of the time, they can get help when they need but the caregiver is more fully utilized.

...

Someone was wondering upthread why people don't go into care facilities sooner.  One reason is if they have a spouse they're caring for or being cared for by.  There are a lot of interdependent older couples out there - she can't drive but he can't walk, or whatever, and so they compensate for each other's weaknesses.  But another big driver is cost:  most facilities are pretty expensive - even the basic ones around here are $5K a month.

...

Another thing I'd like to comment on is anosognosia.  It's something that happened with my Dad last year in early- to mid-dementia where he had a blind spot to his dementia-related deficiencies.  It's not willful ignorance; it's a part of the disease.  Sometimes this makes caring for them difficult.  My Dad wanted to go on a trip to Egypt with his similarly frail girlfriend at a time when it was too difficult for them to travel to the nearby Mexican restaurant with me.  You could point out both facts and he would agree with both of them but not recognize the inconsistency and irrationality.

Sometimes what people are describing above as denial can be just denial - dementia is awful and hard to face.  But sometimes it can actually be anosognosia as part of the disease process.  If it is anosognosia (and if you evaluate things carefully you can probably figure it out), it might help you as the caregiver deal with it and you might handle it a bit differently.

[iluvzbeach]

@secondcor521 Is IPF Interstitial Pulmonary Fibrosis?  I ask because my MIL has just been diagnosed with this and, if this is what your mom had, I'd like to ask you some questions if you're open to it.  A little background, my MIL is 82 and lives in Houston on her own.  Neither of her children wants to have much to do with her (she's extremely self-centered & difficult) and so we're kind of wondering what to expect with this diagnosis.  Again, if this is what your mom had and you're open to it, I'd like to pick your brain a bit.  We can always take it out of this thread, if there is concern about hijacking the thread.  TIA!

[secondcor521]

@secondcor521 Is IPF Interstitial Pulmonary Fibrosis?  I ask because my MIL has just been diagnosed with this and, if this is what your mom had, I'd like to ask you some questions if you're open to it.  A little background, my MIL is 82 and lives in Houston on her own.  Neither of her children wants to have much to do with her (she's extremely self-centered & difficult) and so we're kind of wondering what to expect with this diagnosis.  Again, if this is what your mom had and you're open to it, I'd like to pick your brain a bit.  We can always take it out of this thread, if there is concern about hijacking the thread.  TIA!

I was using IPF as an acronym for Idiopathic Pulmonary Fibrosis.  Sounds like the same or similar disease.

You're very welcome to PM me and I'd be happy to share any info.  I don't want to derail this (very good) dementia thread.  Or start a new thread and tag me if you think there would be general interest.

[mspym]

I’m nearly at the end of a week staying with my mum while my sister and BIL take a well-earned break and I recognise that she is still at the mild end of ALZ but it’s getting worse. Thankfully she’s over the denial and we can just deal with the forgetfulness instead of having to pretend it doesn’t exist. The anti-anxiety meds are helping with the moods and anger.

I went to her last geriatric wellness check with her and the doctor got very serious with me and my sister that when Mum is expressing her ‘busyness’ and stress over (feeding two cats and patting a dog) that this is her expressing her limits, that it really is as much as she can cope with. Now she’s down to one cat and it’s noticeably easier for her to cope with.

We both wish that we could have got her into a senior living apartment five years ago but she would never have consented and getting to the farm so she has more regular company and someone to make sure she takes her meds was more important than striving for a better solution that was never possible. And now it’s probably too late for her to move until it’s into full-time memory care. But we’ve come up with a plan for when she can’t drive anymore so she keeps up the things that bring her joy - her social tennis and coffee, her craft group (even if she just keeps knitting and frogging the same piece over and over) and her gardening.

It’s good that there’s three of us to tag in for each other.

[Just Joe]

I am not sure what a solution for this situation is. Maybe moving to a retirement village when one is still able to make decisions? What are your thoughts? I often see frail, obviously unwell old people doing the shopping and i wonder about their background. Are they too proud or too stubborn to admit defeat and move into assisted living?

Save a shit ton of money and move into a continuing care community before you need it.  That's my (childless) plan.  The harder part is to get DH to agree.

We recently moved my 89 year old mother into a senior living apartment.  She loves it there but the microwave is different, and the TV is different, and she has a difficult time with names (duh).  I think a year earlier would have made for an easier adjustment.

This is my plan as well. Also don't know if DH will agree...he wants to spend his old age AWAY from other people, so is lobbying hard to move out of town/to a very small town with few long term care options... I would prefer to live that way as well, but practically speaking with my mother aging and in our care, and our own aging on the horizon, I do wonder if I'll live to really regret that plan.

Don't isolate yourself too much. That is one of my parents' problem. Father has a few buddies that would do anything for him but b/c all of them are an advanced age, the help would be limited.

My mother has zero friends b/c she didn't do the friendship maintenance when she was working. DW and I also have a similar potential situation on the horizon. We're working on this a little.

Having a huge bucket of money to hire out all your needs would help though.

[Just Joe]

Regarding the "bury your head in the sand" approach.... it's a real thing, it's common, and it absolutely sucks. It basically makes EVERYTHING harder, because it's so much easier to get a problem handled earlier than later, but denial is a hell of a drug. I don't have a solution. This is why having somewhere to vent is helpful, because at least you can get it out.

OP - you should also plan for a medical crisis involving your dad. IE, what happens when your dad has a stroke and is in the hospital/rehab for months? No, you can't predict for sure but it's also not rare. However, that's often the point at which you can actually get your mother into the nursing home or whatever.

That right there is why I'm pushing so hard for decisions to be made, boxes to be checked off, paperwork done. That is situation worries me more than any other. His health is very good at the moment but I also witnessed his father die at a family holiday gathering years ago suddenly from an aneurysm more or less mid-sentence. One moment everything was great, the next DW was doing CPR and I was calling for an ambulance.

If something happened to him, I could take off two weeks or more if necessary to deal with all of this if I had to. Much would need to happen quickly and I would need to find paperwork, account numbers, doctor's offices, passwords, etc. b/c he has not recorded that anywhere that he has made us aware of. I'm "the guy" and have zero information. Sibling is helpful and willing but riding shotgun. 

[Just Joe]

An update: things are quickly declining. We've spoken to so many friends and colleagues (including here) about their experiences. Very valuable perspectives.

What we've learned: everyone progresses at their own speeds. Some people's dementia lasts a decade or more. My mother's dementia probably started two years ago but my father hid this situation from my sibling and I. Not sure what the objective was, probably simple denial as that was the case on several other facets of this "adventure" early on. I've been aware of it since late spring.

I'm predicting (as an amateur caregiver) that she might be gone within six months if she doesn't plateau at some point. She went from being able to effectively mask her symptoms in May to her first episode of incontinence this weekend. She can no longer finish her sentences. She's lost the ability to identify daily items like food stuffs. She resorts to telling us in single words what she wants - green (grapes). Hot (coffee). Still no taste or smell though she has food preferences. Her loss of smell and taste is related to her COVID episode several years ago. Maybe she has favorite temperatures or textures? Or imagines what the flavors are?

Her lucid moments of understanding her environment and who we are mostly gone. She doesn't know who we are and wants to go home (she is home, same home of 40+ years). That said she and I are getting along better than ever - mostly. We've always had a tense relationship. Similar with my father and I. Also better.

She has spent the past couple of weeks packing and unpacking and moving garbage bags of things from upstairs to downstairs and back upstairs. She is a spry old lady. Slower and slower every day but until recently quite capable of walking more than her frail appearance implies. The stairs are a serious risk now. I would prefer to have her restricted to downstairs only but my father knows best - or thinks he does.

Because she can no longer manage her personal needs - she can't operate the shower control knob for example - and because my father is now a male stranger unwelcome in the bathroom naturally - it is time for a memory care facility. We've completed our homework and we're working to place her into the best option this week or perhaps next week.

FYI, prices have been fairly consistent here in the middle of the country but the quality of the facility varies. About half the prices folks who live near the coasts have shared.

Hospice has now been contacted. Dad was hesitant to do this. Resistant to home healthcare too. Maybe this varies from state to state but hospice told us that dementia is considered a terminal disease so they can be involved the entire time no matter how slowly the disease progresses. Easier access to doctors and medications. Frequent home visits, etc. Do this very early on if your loved one has a problem. You can terminate hospice care if you are not satisfied. And their care will extend (at least here) right into a care facility of your choice. Hospice is free and is not limited by income level here.

Hopefully your loved ones will be flexible, mellow type personalities. My parents have both been life-long very opinionated, picky and stubborn. It has made navigating this exponentially more difficult. Don't be this elderly person. They have not been easy to work with until they are completely exhausted. I worry that my mother despite her fast decline will be unhappy and resistant to a care facility and "all those old people". I'd like to think that she would enjoy a change of environment, and frankly enjoy being away from Dad who has been a source of frustration for her as her caregiver. I've been repeatedly told caregivers always get grief from their loved one.

The inside joke with my sibling is if we have a good idea, it is certain that our father will say no. We've made solid, easy suggestions to reduce their stress about different things. The vibe in the house can be very negative just b/c he says "no" when he should be distracting or deflecting or delaying until she forgets. He has been slow to learn that despite my sibling and I demonstrating the effectiveness of that.

She was very possessive about her car and her phone. Can't use either but my father - who she doesn't recognize - was keeping these things from her. I suggested that we replace the phone case (~$10 from Walmart) and change the phone wallpaper. Then he could tell her that she lost her phone. No - too much trouble. He plans on replacing her car when she is gone (he sold his unused aged car to a grandchild). Sell it now Dad, we'll tell her that her car is at the shop. Nope. She she stressed for months over things that she shouldn't have. It's not about money. Dad - let's put locks on the doors so you can both sleep. Nope. Too much trouble.

Don't be that guy...

Thank you to everyone that shared anything in this thread. I'll update it if anything changes that might be useful to future readers.

[Sibley]

I hate to say it, but your dad's reaction is not all that unusual. Not helpful, but also not unusual. I'm sorry. Hopefully the move goes well. The facility will have had lots of practice moving in dementia patients, so hopefully they'll know how to handle her to keep her calm.

[wenchsenior]

My inlaws had multiple DNRs and repeatedly expressed their wishes. FIL died rather suddenly. MIL had been on the dementia path for quite some time, but it only became obvious after FIL died. Her DNR was getting old, so her healthcare provider wanted a new one. When asked, she insisted she wanted anything and everything done to prolong her life. Total 180. We protested to the hospital that she was no longer of sound mind, but she had been cogent when she had repeatedly signed DNRs over the years.

They sent a nurse to our home for an interview. They finally concluded that they would honor the existing DNR, but damn, is was a PITA.

Make sure your loved ones documents are less than ten years old.

Per my sticky situation several months ago, discussed upthread, this ended up being what we did as well about 2 months ago.

Turns out that you really can't risk making a judgement call as the Power of Health Care b/c (in that state, anyway), you are legally liable if you do not  honor clearly stated current wishes, even in the event that the wishes contradict in detail or principle decades of previous wishes (ugh).
So my sister (primary manager of my father's healthcare) visited and arranged a special appointment with Dad's PCP to do another interview about DNR, this time explaining in detail exactly what a request for full-code resuscitation would likely entail, and what the likely outcome would be (that is, not a return to Dad's current level of function, unlikely that he would be able to return home afterward, broken ribs, etc etc). 

With more complete info, Dad returned to wanting a DNR order.

PHEW.

[wenchsenior]

I hate to say it, but your dad's reaction is not all that unusual. Not helpful, but also not unusual. I'm sorry. Hopefully the move goes well. The facility will have had lots of practice moving in dementia patients, so hopefully they'll know how to handle her to keep her calm.

Agree.

Joe, I'm crossing my fingers that this stage helps resolve some of your stress (and your fathers), for a while at least. Oftentimes after an initial adjustment, the patient does better emotionally under professional care.  I hope that is the case.

[iluvzbeach]

Just Joe - thank you for sharing this update with us.  I am sorry your mom's situation has declined so rapidly.  Have you had the opportunity to be involved with any of her doctor's appointments and, if so, have they provided any explanation?  Is this "normal" or at least in the range of "normal", or have they checked to see if any other issues might be causing the rapid deterioration?

It definitely sounds like getting her in memory care ASAP is the right thing to do and, hopefully, there will be some improvement with your dad once that happens.

[mspym]

@iluvzbeach not OP but from what I have read this rapid decline is well with the range of “normal” possibilities. If there are additional factors- such as UTIs - this should be picked up by care staff/ during initial appraisals by the care facility.

@Just Joe I am sorry to hear about your mum and that your dad is not helping you help him. That is some very useful information about hospice care - thank you for sharing.

On the theme, I saw my mum today and took her to a Physio appointment because her shoulder has been hurting her. She’s in a bad dementia low right now - there’s been a lot of recent stressors so she’s both more forgetful and more upset about being forgetful. We went home and did her exercises. I’m going back tomorrow to be more company and go through the exercises again. Probably the worst thing is she can’t go to tennis for two weeks which is another social engagement that keeps her level.

[Just Joe]

I hate to say it, but your dad's reaction is not all that unusual. Not helpful, but also not unusual. I'm sorry. Hopefully the move goes well. The facility will have had lots of practice moving in dementia patients, so hopefully they'll know how to handle her to keep her calm.

We've just come to accept his resistance to change. He's a good Dad and husband but some of these topics were a challenge for weeks and months. That's alot of wear and tear on everyone involved.

[Just Joe]

I hate to say it, but your dad's reaction is not all that unusual. Not helpful, but also not unusual. I'm sorry. Hopefully the move goes well. The facility will have had lots of practice moving in dementia patients, so hopefully they'll know how to handle her to keep her calm.

Agree.

Joe, I'm crossing my fingers that this stage helps resolve some of your stress (and your fathers), for a while at least. Oftentimes after an initial adjustment, the patient does better emotionally under professional care.  I hope that is the case.

Thank you. Also happy to say that my sibling - someone I've been low contact for a number of years - has come through to be a huge help and a good ally. Yay... Also, we're on the same page about Mom and Dad. What more could I ask?

[Just Joe]

Just Joe - thank you for sharing this update with us.  I am sorry your mom's situation has declined so rapidly.  Have you had the opportunity to be involved with any of her doctor's appointments and, if so, have they provided any explanation?  Is this "normal" or at least in the range of "normal", or have they checked to see if any other issues might be causing the rapid deterioration?

It definitely sounds like getting her in memory care ASAP is the right thing to do and, hopefully, there will be some improvement with your dad once that happens.

Yes, I have attended several of her appointments with my parents. I have better success managing her than my father. I just sweeten up my language like I'm speaking to a young child. She likes the car DW and I bought last spring perhaps just b/c of the color. It is quite ordinary otherwise. I always drive that so it seems familiar. She likes to sit up front. I play music that she likes.

My father's approach is to get frustrated if she decides she isn't going to the appointment and to tell her how important this trip to the doc is. Queue too many words, too much explanation for her current mental faculties, and his elderly male command voice which she really doesn't like to cooperate with. 

I can lure her into attending the appointment. Will you go along with me? Would you go for a ride with me? How about we stop for coffee after the appointment? Etc. etc. etc. And she more often than not goes with me (us).

Dad is tired, frustrated and beyond his limits. The last trip required me stopping a lengthy "argument" between them. She's trying to explain herself. "I don't appreciate people prying in my business" which is a frequent expression of her frustration at her loss of her independence. Anytime she gets frustrated with someone out comes a similar statement: "I don't appreciate..." He responded with a long winded explanation of the importance of this appointment and how they (really I) made the appointment months ago, and she agreed to go, etc. There was nothing productive about the whole affair.

I finally just told both of them to say not another word. ;) I needed her to have time to "reset" i.e. forget the conversation so her mood would mellow before we arrived at the doctor's office, which she did. Then I double parked for a moment and helped her out of the car before I could park. Made things happen faster than she could understand so she couldn't develop a negative opinion about what was happening. It was kind of funny. Told Dad to get her on an elevator and up to the office and I would be along in a moment. Well, I outpaced him too apparently so I had to quickly park and herd both of them to the office. Once there she brought out the "I don't appreciate.."

Quick! Distract, delay, change the topic, etc. The Dr's office staff were SUPER. They knew just how to speak to her and she was very cooperative. They liked her sweater, her hair, and told her she was pretty. I sat in the exam room with my parents. She failed all their cognitive tests. Silently I passed them. ;)

Anyhow, MC facility deposit has been made, she's on a waiting list and we're told maybe a few weeks. There are other MC facility options but Dad wants to wait for the "preferred" one close to home. Sibling and I agree if he can manage with our help, hospice help and perhaps home health care in a pinch (haven't had them in yet) then we'll wait. Hospice was due at the house today.

We toured about 5 of them. Older facility was more like a hospital. Hard floors, dead-end hallways. Barely any outside space. No covered outside space (shade, protection from the weather). Newer facilities were more like a hotel. Carpet, endless hallways that looped in a square with a courtyard garden where they could not get lost. Covered porch areas. Much nicer and a little cheaper. The older facility really did not have the refinement that the newer places offered.

So I'll be at my parents' house tomorrow night and will stay up with her - her nights and days are mixed up. Sibling may come Sunday and stay until Monday. This gives my father a chance to get caught up on his sleep. My employer is giving me the flexibility to take days off if necessary. I'm using that option sparingly. Sibling also has some freedom in regard to their job.

I planted some seeds about Dad's life after Mom is in care. I want to get him (and her later) closer to us so we can spend more time with him, check on him conveniently, help him shop if necessary, etc. We have a large rural piece of ground with room for a cottage for Dad. To our surprise he seems enthusiastic about it. I don't want him across the state or across our county. Sibling is on board. His health is good now but what about 3-4 years from now? If he is across the yard, I can help him and he can participate in our family life (meals, events, visits, etc) more completely but also have the privacy that is important to him (vs living in our house or living in an apartment). 

[Just Joe]

@iluvzbeach not OP but from what I have read this rapid decline is well with the range of “normal” possibilities. If there are additional factors- such as UTIs - this should be picked up by care staff/ during initial appraisals by the care facility.

@Just Joe I am sorry to hear about your mum and that your dad is not helping you help him. That is some very useful information about hospice care - thank you for sharing.

On the theme, I saw my mum today and took her to a Physio appointment because her shoulder has been hurting her. She’s in a bad dementia low right now - there’s been a lot of recent stressors so she’s both more forgetful and more upset about being forgetful. We went home and did her exercises. I’m going back tomorrow to be more company and go through the exercises again. Probably the worst thing is she can’t go to tennis for two weeks which is another social engagement that keeps her level.

I hope she quickly recovers so she can be more active again.

[secondcor521]

@Just Joe (and others), it may be worthwhile to know about FMLA - Family and Medical Leave Act.  Basic idea is that if you work for a large enough company for enough hours in the past year, then you can take off up to 12 weeks unpaid on any schedule you need either to take care of family members or take care of your own medical needs.  In theory the company can't discriminate against you because of your use of FMLA, and they have to restore you to a similar job when you're done with your FMLA.  That's the approximate deal, anyway; check the real law for the specific and accurate details.

[Just Joe]

Thank you for the info @secondcor521!

[Bee21]

So sorry to hear she deteriorated so quickly.

I can see a rapid decline on my mother too. Earlier this year she could write comprehensive emails.  Now she manages only a few lines. And talking to her is like talking to a child. She still recognizes us, but doesn't want to have anyone around. People just annoy her in general. We are still on the fence about her knee replacement surgery because we don't think she will recover. My father will definitely not be able to manage her recovery. And it looks like she might have some tumour going on as well, but it is allegedly not progressing fast. So we are ignoring it for the time being.

And of course, she is very difficult and stubborn and my poor father is at the end of his wits.

[deborah]

My grandmother with dementia had hip surgery and never walked again afterwords because she’d forgotten how to walk.

[Catbert]

So sorry to hear she deteriorated so quickly.

I can see a rapid decline on my mother too. Earlier this year she could write comprehensive emails.  Now she manages only a few lines. And talking to her is like talking to a child. She still recognizes us, but doesn't want to have anyone around. People just annoy her in general. We are still on the fence about her knee replacement surgery because we don't think she will recover. My father will definitely not be able to manage her recovery. And it looks like she might have some tumour going on as well, but it is allegedly not progressing fast. So we are ignoring it for the time being.

And of course, she is very difficult and stubborn and my poor father is at the end of his wits.

Based on my friends and family, knee replacement will only "work" if the person does the required PT afterwards.  If that's beyond your parents' ability to do, the surgery likely won't really help. 

[secondcor521]

It is my understanding that dementia patients often see a large step increase in their dementia after surgery.  I think it is a risk to consider in the decision making process.

[iris lily]

My grandmother with dementia had hip surgery and never walked again afterwords because she’d forgotten how to walk.

L my mother broke her hip and was in the very early stages of dementia and she was careful to do her exercises and etc. She did fine. But by the second hip break, no one suggested surgery. She was too far gone in the head.

[Bee21]

Thanks for sharing these stories.  Yes, we completely agree that it is a waste of money given the circumstances. She will never recover.

 The only reason my father is considering it, because he is at the end of his wits at listening to her constant (and i mean constant) complaining and wailing. She is in pain, it is obvious,  walking is difficult.  She shuffles and stops at every step and sighs dramatically.  Wails. Every step is an ouch, an ohhhh an 'ohmygodwhyareyoupunishingme' and it is draining. Physio won't help. She refuses to use a wheelchair.  A walker. A stable walking stick...any mobility aid is a no  because she is concerned that people will think she is disabled. .....they are all lined up in the basement ready to be used, but she screams and curses and cries whenever the topic is mentioned.

It is awful. And she constantly accuses my poor father of abuse and neglect.

If they lived in a civilized country with decent healthcare and proper nursing homes she would be placed in one of them for her own comfort and  safety. But it is not the case.  Nursing homes are so awful there that my father refuses to consider them despite the difficulties he is facing in caring for her. This operation would cost half of his savings, but he is considering it, because he is sick and tired of being accused of neglect.

My biggest achievement of the year is that I persuaded her to accept a carer (2x a week) and a cleaner.

We never thought that this illness would change her personality so much that her ill version makes it almost impossible to look after her the way she deserves. And we are struggling with looking after this awful ill person who replaced a wonderful, kind and gentle,loving and caring mother and wife. Plus i live on the other side of the world, and the best i could do at this stage is listen to their complaints every evening for an hour.

[Just Joe]

We're in better shape than a few weeks ago. Mom's memory is a wreck however, the hospice doctor has her on Zoloft and Seroquel plus I believe Divalproex.

Edited to say - the hospice group did more good for her in less than two weeks than her doctors and two specialists did for her in 6 months.

It has calmed my mother a great deal. Reduced her hallucinations. My father is able to sleep in the bed with her and thus is better able to aware of her night time activities (usually wandering through the house packing or unpacking clothes b/c she thinks she is giving them to imaginary people).

Before this she resented him for a list of reasons not really based in reality. His approach was often wrong for the occasion using an "authority voice" rather than using words in more creative ways. Not unlike my teenage years.

She obsessed over some of their shared things as solely her own (house, car, phone, etc). There was a list of imaginary characters that played into her decision making process. Paranoia that people were stealing her things - that she lost by placing them somewhere "safe" and then forgetting in short order.

Dad complains that she is still in a fantasy land and that he'd like to reduce her meds to help her return to reality a bit but I've really had to debate with him about the benefits of this new situation. He might gain 20-30 minutes of lucidity at some point during the day but she might return to 24 hours of negative emotions and ideas. She was completely unmanageable for him and I had to drive across the state a few times early on to help calm her when he couldn't.

I know he wants his life-long love and partner back but this thing is really progressing fast. Her stress levels are so much lower with the new meds. Even happy. She is smiling more. And this alternative reality is an inevitable part of dementia. 

He was able to take her out for a meal and on a fall country drive and she really seemed to enjoy it for the first time in a long time. She can't verbalize anything complicated at this point. Last weekend she didn't know the word for jacket or where they are kept in the house. He said when they returned home from a trip out for shopping, she didn't recognize the house as their's. She's starting to have bathroom issues but fortunately in her new state of mind, she is more agreeable to his help.

Lastly, she is becoming so weak and frail. I took her for a walk and she made it about ~50 ft from the driveway before she was ready to head back inside. In other good news, she has forgotten she doesn't eat certain foods. She has long been a picky eater. Dementia made that worse for several months. Now she'll eat some of those things she previously avoided. Still no taste or smell apparently. Thanks COVID.

So, a little good news...

[Catbert]

I'm glad that hospice has been so helpful.  Focusing on making someone feel better rather than curing them makes all the difference.

[FireLane]

Thanks for this thread, @Just Joe. It looks like I'm going to be dealing with this soon, so I read it from the beginning today.

In my case, it's my mother-in-law. She has dementia, probably vascular type. She's likely had it for several years, but it hasn't been obvious because, well, her other personality flaws conspire to conceal it.

She's always had issues with emotional dysregulation, so it's common for her to have random outbursts or tantrums. She has no intellectually engaging hobbies and spends most days sitting on the couch passively watching TV, so any decrease of capacity would be hard to notice. She avoids doctor appointments so she doesn't have to hear bad news. And because of what we're pretty sure is undiagnosed ADHD, she tunes people out when they speak to her. When she has no memory of a conversation that took place a few weeks ago, as is often the case, there's no way to know if she forgot or if she just wasn't paying attention in the first place.

But in recent months, it's been getting more obvious. She mixes up names, she forgets words more and more often, she can't follow simple directions. The most noticeable symptom so far is that last weekend, she tried to read a book to my son... and couldn't.

After much resistance, Mrs. FL finally got her to a doctor for a cognitive test. It confirmed mild cognitive impairment, as we suspected. According to the Global Deterioration Scale that @secondcor521 posted, she's a solid 4.

Mrs. FL has suggested that she should look into assisted living, but MIL has been hostile to even discussing the idea. From what I've read here, this is common. It just means that, if the day comes when she has to move, she won't have a choice about where and will have to go to the first place that can take her, even if that's far away from family.

The good news is that Mrs. FL already persuaded her to donate her car to charity, so there's no danger of her driving. The doubly good news is that Mrs. FL also has power of attorney and has been managing her finances, so that's also covered. It sounds like a healthcare proxy is the next useful thing we might want to get.

[secondcor521]

After much resistance, Mrs. FL finally got her to a doctor for a cognitive test. It confirmed mild cognitive impairment, as we suspected. According to the Global Deterioration Scale that @secondcor521 posted, she's a solid 4.

That's about the point where it starts becoming obvious to families.  So much so that it's almost a definition of stage 4 - "family and friends start to notice deficits".

Mrs. FL has suggested that she should look into assisted living, but MIL has been hostile to even discussing the idea. From what I've read here, this is common. It just means that, if the day comes when she has to move, she won't have a choice about where and will have to go to the first place that can take her, even if that's far away from family.

If you can suggest that Mrs. FL and other family research and visit potential AL and MC facilities now, it might help you be better prepared for when that day comes.  It'll also help understand the differences between AL and MC, and the variation across facilities in terms of qualities and costs.

The CCRC-ish place my Dad lives in asserts we were a bit late getting my Dad moved to AL and then also to MC.  But they also said the right time is when the family is ready.  Personally I still think we got it about right, but it's also true that the facility made the initial recommendation to us that got the ball rolling.  The falls and hospitalizations were also a clue / motivating factor.

The good news is that Mrs. FL already persuaded her to donate her car to charity, so there's no danger of her driving. The doubly good news is that Mrs. FL also has power of attorney and has been managing her finances, so that's also covered. It sounds like a healthcare proxy is the next useful thing we might want to get.

Make sure her will is up to date.  Have conversations with her now about what she wants in terms of health care, finances, funeral / burial / etc.  Healthcare directives vary by state and have lots of different names.  My Dad has a DNR and a POST; make sure you have the conversations with her so you know her wishes in all these areas and can respect them.  There will come a day when she won't be able to tell you and it'll be better if you don't have to guess and fear guessing wrong.  Take copious notes so you can refer back later.

These conversations might seem morbid or rude or out of place or whatever.  But I think it's far better to have had the conversation than not.  We mostly got the topics covered and the documents in place with my Dad, but there were a few holes.  In those holey areas we just do the best we can.  But it's also nice to say, "OK, we made this decision and we feel confident and good about it because that's exactly what Dad said he wanted."

[windytrail]

Thanks for everyone's stories. My mother and I are now dealing with this with my father. He is 72 and is experiencing symptoms of dementia. He had a brain injury (intracerebral hemmorhage - blood vessel exploded in the brain) in his mid-thirties which left him permanently disabled, unable to work, but he made an impressive recovery and re-learned how to do a lot of daily activities such as working in the yard, driving, shopping, going to the gym, etc., but always with short-term memory loss. Now at 72, he is starting to go the other way again and is currently in denial about how much it has progressed. He lives by himself. I live on the other side of the country and my mother is an hour away from him. They have been divorced since '98 but still friends and we can act as family. She helps him with a lot of things, but lately, it's becoming too much for her to do alone.

His physical health is still comparatively good but he has lost about 35 pounds, a lot of it muscle, due to irregular or insufficient eating habits, not being able to cook anymore, and not being able to go to the gym since COVID (after the gyms reopened he forgot how to use the machines). I setup a grocery delivery service, Instacart, which works for some prepared foods that he will notice in the fridge, but others he won't recognize and they will end up going bad, such as quiche that he used to love.


I flew down a couple weeks ago to get the ball moving on (a) a regular cleaning person, (b) home care, and (c) options for assisted living. He seems to have taken well to a cleaner house after the first cleaning. We visited an assisted living facility yesterday and today we met with a home care person. He seems resistant to both. Today he said that home care is something that he would "consider further." We told him that (at least before he has been diagnosed) the decision is still his, but that we aren't going to be the ones to provide all the care he needs. My mother agrees to see him every two weeks, which is a good boundary for her, but he will still call her with questions almost every day, and she has to coordinate his doctor's appointments and drive him to them, which is not fair for her.

It's a tricky situation because we don't want to let him languish at home and the current level of care my mother is providing is unsustainable. At the same time, there are ethical issues with "forcing" home care on him and he may not accept it.

I am very cognizant of the fact that family care often falls on the women of the family. It's not fair and my mother deserves better. It's easier for me to be 3,000 miles away from him. We need to find a solution that can preserve our emotional well-being. Thanks for sharing everyone.

[LaineyAZ]

windytrail,
That's a tough situation.  Do you think your mother/his ex might have a frank talk with him about her care duties? 

As in, she's not going to be able to continue in this role (I assume she's in her late 60s/early 70s as well?) Because right now her being available to do medical-related things for him means he has the option to just say No to assisted living, an in-home carer, etc.   I'd hope he'd consider her own health and time and energy because right now it doesn't seem fair to your mother.

[shelivesthedream]

It's such a shame when the elderly won't accept help (paid or otherwise) because I really believe from my experience watching my grandmother live semi-independently into her 90s and then decline very sharply over the course of a few months at the end that help with the little things can slow or make manageable quite a lot of the things that make daily living so exhausting for the person and their carers.

For example, help with eating and drinking and taking your pills on time. My grandmother would forget to eat, forget to drink, forget to take her pills - and being dehydrated with low blood sugar made her more forgetful. She didn't have dementia exactly, just a sort of general cognitive decline, but it could easily have turned into a severe downward spiral.

Thankfully she accepted a daily visit from a carer "to help her with the shopping and housework" reasonably early on and we were able to add things in as needed without it seeming like a huge change. So for the last few years, the carer was making her lunch and eating it with her, then making a sandwich and leaving it in front of the kettle for the evening (my grandmother would make endless cups of tea even if she'd just drunk one or had put one down and forgotten about it, so she would encounter the sandwich and usually eat it) and checking the next day whether it had been eaten, ignored or thrown away.

We were all at the other end of the country, but I really think that her accepting help/us sneaking in more help with the absolute basics of daily living reasonably early on slowed her cognitive decline substantially compared to if she'd been left to her own devices. And by the time she became confused about who people were (she could sort of recognise that my children belonged to me, and that I was either her daughter or granddaughter, but she couldn't remember their names or how many I had - it was bittersweet to see her delighted to see them and having warm, great-grandparental feelings towards them even when she wasn't really sure why all these children were in her room) she had had the same carer for long enough that she recognised her as a familiar face and knew generally why she was there even when she couldn't quite remember her name.

I think a really important question to ask of paid carers is: "Is X allowing you to do everything you are supposed to do?" People often get suspicious of paid carers and try as they might they cannot force themselves on their client. It's really important to keep tabs on whether the elderly person is letting them do their job. It's not accusing them of laziness or short changing or anything like that, it's simply asking them as a professional whether anything is impeding them.

I'm sorry to hear so many people are struggling with all this. It's really hard.

I can't recall if anyone has mentioned this, but my grandmother retained the ability to read for some time after she lost the ability to speak and to process other people speaking (she was also very deaf, but this was additional). (When she was in the care home, a lot of the carers were from abroad and she absolutely could not understand them at all, even when she could still understand me a bit.) We bought an A4 whiteboard and I would write single words on it. "Eat?" "Drink?" "Loo?" A sentence was too much for her. But it helped a lot to allow her to communicate her basic needs when she could just nod or shake. We tried a sort of printed communication card with lots of pictures and words but it was too much for her to look at all that at once. Just the one word on the blank whiteboard worked much better for a while.

[Just Joe]

I am very cognizant of the fact that family care often falls on the women of the family. It's not fair and my mother deserves better. It's easier for me to be 3,000 miles away from him. We need to find a solution that can preserve our emotional well-being. Thanks for sharing everyone.

I don't know anything about the difference in hospice care state to state but here hospice is sending the healthcare workers to my parents' house. No traveling for appointments and this will continue into assisted living / MC.

Perhaps that is a possibility?

Waiting lists: once you have a preferred facility picked out (do this as early as you can), get on the waiting list. Then decline when they call and let them slide you down the list. My mother needs to be in care now, but they are looking at an unknown wait with their preferred MC facility. 30-60 days?

My sibling and I encouraged my father to do this bit of homework sooner than he did. It took my sibling and I both to make the day happen. Partly b/c he was tired and overwhelmed. Now with the newer meds and Mom sleeping every night, he is much more rested too and more like himself.

Both parents have been lifelong hard-heads.

Also, my mother fell last night in their room and couldn't get back up. Balance issues coming on? Dad got her back up and into bed. No injury. Another hint she should already be in MC b/c they live in a 2-story house and she is still going upstairs to sleep/bathe/etc. I'll let it ride a little longer but will start pressing soon to move her a bed into a downstairs room and put up a babygate so she can't go upstairs anymore alone.

Sibling and I are always about two steps ahead of our father. She'll be okay a little longer he says.

So glad that our house (DW and I) have a main floor primary bedroom suite in case we are still there at an advanced age (our intention).

Another topic: setup group texts or schedule landline calls to your healthy parent. If something sudden happens to my cargiver parent, my parent suffering from dementia is incapable of summoning help at this point. My father says my mother is capable of walking to the neighbor's house - but she really isn't as my recent "walk" with her proved. She can't make it much past the mailbox and the houses there are spread out. Also, at this point she doesn't even recognize her own house, how would she know where the neighbor's house was - her vision and her glasses are AWOL again b/c she hid them somewhere.   

[ringer707]

It's such a shame when the elderly won't accept help (paid or otherwise) because I really believe from my experience watching my grandmother live semi-independently into her 90s and then decline very sharply over the course of a few months at the end that help with the little things can slow or make manageable quite a lot of the things that make daily living so exhausting for the person and their carers.

For example, help with eating and drinking and taking your pills on time. My grandmother would forget to eat, forget to drink, forget to take her pills - and being dehydrated with low blood sugar made her more forgetful. She didn't have dementia exactly, just a sort of general cognitive decline, but it could easily have turned into a severe downward spiral.

Thankfully she accepted a daily visit from a carer "to help her with the shopping and housework" reasonably early on and we were able to add things in as needed without it seeming like a huge change. So for the last few years, the carer was making her lunch and eating it with her, then making a sandwich and leaving it in front of the kettle for the evening (my grandmother would make endless cups of tea even if she'd just drunk one or had put one down and forgotten about it, so she would encounter the sandwich and usually eat it) and checking the next day whether it had been eaten, ignored or thrown away.

We were all at the other end of the country, but I really think that her accepting help/us sneaking in more help with the absolute basics of daily living reasonably early on slowed her cognitive decline substantially compared to if she'd been left to her own devices. And by the time she became confused about who people were (she could sort of recognise that my children belonged to me, and that I was either her daughter or granddaughter, but she couldn't remember their names or how many I had - it was bittersweet to see her delighted to see them and having warm, great-grandparental feelings towards them even when she wasn't really sure why all these children were in her room) she had had the same carer for long enough that she recognised her as a familiar face and knew generally why she was there even when she couldn't quite remember her name.

I think a really important question to ask of paid carers is: "Is X allowing you to do everything you are supposed to do?" People often get suspicious of paid carers and try as they might they cannot force themselves on their client. It's really important to keep tabs on whether the elderly person is letting them do their job. It's not accusing them of laziness or short changing or anything like that, it's simply asking them as a professional whether anything is impeding them.

I'm sorry to hear so many people are struggling with all this. It's really hard.

I can't recall if anyone has mentioned this, but my grandmother retained the ability to read for some time after she lost the ability to speak and to process other people speaking (she was also very deaf, but this was additional). (When she was in the care home, a lot of the carers were from abroad and she absolutely could not understand them at all, even when she could still understand me a bit.) We bought an A4 whiteboard and I would write single words on it. "Eat?" "Drink?" "Loo?" A sentence was too much for her. But it helped a lot to allow her to communicate her basic needs when she could just nod or shake. We tried a sort of printed communication card with lots of pictures and words but it was too much for her to look at all that at once. Just the one word on the blank whiteboard worked much better for a while.

Dealing with this right now with a grandma who is not necessarily in cognitive decline, but in sudden physical decline due to spinal stenosis. Doesn't want in home help. I'm pretty sure all she would need is what you describe- someone to come in and make sure she's eaten some breakfast, has gotten up and dressed ok, and do some light tasks like dishes and starting laundry. She's completely resistant to it, despite being fortunate to have ample amounts of money to cash pay for these services. All I can think is "girl, are you crazy?! I want someone to come do my dishes and laundry for me and I'm able-bodied!" All I can think is I hope I'm not like this when I'm older. I am a childless cat lady, but will have a niece in charge of end of life decisions for me. I've encouraged her to take away my keys, put me in a home, etc., when the time comes. I've seen so much of this type of backlash from this generation (mine being Silent Generation with both grandmas) and I wonder if it's generational and will phase out some by the time it trickles down to Gen X/Millennials. But maybe I'm wrong. Maybe I'll turn 85 and tell everyone I'm independent and will do what I want.

[RExplorer]

I’m going through this with my mom.  We’re at the point of waiting for an opening in memory care at the CCRC where she and my dad are currently in independent living. 

I wanted to recommend a book — The 36 Hour Day. It covers anything and everything related to having someone close to you with dementia.  Check your library, as that’s how I read it.  But I also then bought a copy for family use/reference, as I can see us going back to it as her disease progresses. 

[shelivesthedream]

@ringer707 : My parents are both in their 70s. They are not elderly, but they are both very invested in the fact that they're not "old".

My mother exercises, dyes her hair, keeps up with fashionable clothing. She's just joined a seniors exercise class for the first time ever and revels in how she's the youngest looking one there. My father has become "old" noticeabley to me over the last five years or so. He can't lift things he used to, his feet hurt, he can't walk far, he can't hear as well, I think he might be becoming a little repetitive. But he insists he's not "old".

I think in a culture that demeans the elderly and criticises interdependence as being a "burden" many people will be emotionally invested in not wanting to be "old". A podcaster I like calls this desire not to be inco venienced by others and to have complete control over your schedule "coffin life" - as in, you won't have to deal with other people when you're dead and that's what people seem to want in life these days.

If someone doesn't value the elderly when they are young, it makes sense that they resist seeing themselves as one of those "worthless, annoying elderly people".

[kite]

Help at home can be cheaper than a move to a facility and enable her to stay home for longer. We were able to keep my Mom at home all the way to the end because I had hired help. No judgement at all for families who must make a different choice.

This is all great advice. ETA: Esp the dog thing. My dad loves one of his caregivers' dogs, even though he was pretty anti-dog for many years prior.

Re: bolded, we found the opposite. Full time at home care was a LOT more expensive than a nursing home (I just posted numbers a few days ago... ~150/yr for nursing homes in the region, as opposed to >200K/yr for in home care).

I wonder if this is a regional thing?

It’s both a regional thing and unique to one’s circumstances.
Direct-hire live-in care near me is around $350/day, agencies will be higher.
The facility where my Aunt was staying billed $600/day + expenses back in 2018.

Obviously, staying at home will include costs of the home and that will factor into plans.
I didn’t have live-in care for Mom as my siblings & I covered a good part of the time. We learned by trial & error that we were better off sleeping at home in our own beds so that meant hiring overnight help. For the most part, I could work from home and might have been able to manage without daytime help except that I was also juggling the care of two other loved ones, another with dementia and one getting Chemo & Radiation. Those were quite a long drive away. It gave me peace of mind to know the same person was showing up each day and not an ad-hoc arrangement with whomever the agency might have available.   

[Catbert]

Comparing the cost of in-home care to a facility also strongly depends how many hours are needed.  If one needs 24/7 care at home from paid caregivers I think that would always cost more than a facility.  But often people can at least start with maybe 4 hours/3 times a week.  Others may need just overnights or 6 hours/7 days.  Also what level of care is needed (companionship? personal care? medical care?) determines how much you are paying for the carer.

[SunnyDays]

Comparing the cost of in-home care to a facility also strongly depends how many hours are needed.  If one needs 24/7 care at home from paid caregivers I think that would always cost more than a facility.  But often people can at least start with maybe 4 hours/3 times a week.  Others may need just overnights or 6 hours/7 days.  Also what level of care is needed (companionship? personal care? medical care?) determines how much you are paying for the carer.

My 93 year old father was recently admitted to a Personal Care Home here in Canada, due to general decline after a heart attack and a fall.
We received home care through the province for about 6 months and even that was a battle to get him to accept, but they did not provide enough service to really free me up to be comfortable being an hour’s drive away from him.  As his mobility declined further, we looked into private home care and it was prohibitively expensive, at almost $900.00 a day for someone to be with him 24/7.  He resisted living anywhere but home mightily but ultimately had to go into a PCH because it provided exactly what he needed at a reasonable cost ($3000/month).  Independent Living, which we also looked into was certainly more upscale but couldn’t provide for all his needs and we still would have had to have home care going in, plus it was significantly more expensive at about 6K per month.  I suppose we’re lucky here because all care homes are government run and subsidized, which keeps the cost affordable, as it’s based on income only.  Assets are disregarded.  My dad actually pays almost the top rate.  Most people pay less.
I can’t imagine what prices must be like in the US.

[shelivesthedream]

I just found out about something called Montessori for the Elderly. I'm a big fan of the Montessori perspective for young children and it turns out people have adapted the guidelines for the elderly: a prepared environment which sets them up for independence, real tasks they can participate in to contribute, and guidelines for successful talking and demonstrating. Those with family members in the early stages might like to Google it.

[windytrail]

Thanks for everyone's stories. My mother and I are now dealing with this with my father. He is 72 and is experiencing symptoms of dementia. He had a brain injury (intracerebral hemmorhage - blood vessel exploded in the brain) in his mid-thirties which left him permanently disabled, unable to work, but he made an impressive recovery and re-learned how to do a lot of daily activities such as working in the yard, driving, shopping, going to the gym, etc., but always with short-term memory loss. Now at 72, he is starting to go the other way again and is currently in denial about how much it has progressed. He lives by himself. I live on the other side of the country and my mother is an hour away from him. They have been divorced since '98 but still friends and we can act as family. She helps him with a lot of things, but lately, it's becoming too much for her to do alone.

His physical health is still comparatively good but he has lost about 35 pounds, a lot of it muscle, due to irregular or insufficient eating habits, not being able to cook anymore, and not being able to go to the gym since COVID (after the gyms reopened he forgot how to use the machines). I setup a grocery delivery service, Instacart, which works for some prepared foods that he will notice in the fridge, but others he won't recognize and they will end up going bad, such as quiche that he used to love.


I flew down a couple weeks ago to get the ball moving on (a) a regular cleaning person, (b) home care, and (c) options for assisted living. He seems to have taken well to a cleaner house after the first cleaning. We visited an assisted living facility yesterday and today we met with a home care person. He seems resistant to both. Today he said that home care is something that he would "consider further." We told him that (at least before he has been diagnosed) the decision is still his, but that we aren't going to be the ones to provide all the care he needs. My mother agrees to see him every two weeks, which is a good boundary for her, but he will still call her with questions almost every day, and she has to coordinate his doctor's appointments and drive him to them, which is not fair for her.

It's a tricky situation because we don't want to let him languish at home and the current level of care my mother is providing is unsustainable. At the same time, there are ethical issues with "forcing" home care on him and he may not accept it.

I am very cognizant of the fact that family care often falls on the women of the family. It's not fair and my mother deserves better. It's easier for me to be 3,000 miles away from him. We need to find a solution that can preserve our emotional well-being. Thanks for sharing everyone.

Update: We now have home care set up for him, 3x/week for 5 hours each. The cost is $31/hr, which comes out to about $1,850 per month. He really likes being where he is and we took into account the idea that moving risks his dementia advancing quicker than if he stays at home. We'll see if that ends up being the right decision and if he gets along with her. His caregiver may be able to drive him to the gym, which he hasn't been able to do in a long time, as well as generally keeping him company.

He also took his dementia test last week with the neuropsychologist. He knows that he didn't do well, which may have helped him start to better realize his deficits. We'll get the results in a couple of weeks.

Thanks for the comments, all.

[monarda]

Has anyone heard of a medication called memantine? My dad is just starting that. How'd it work for your family member?

[rosarugosa]

Has anyone heard of a medication called memantine? My dad is just starting that. How'd it work for your family member?

My mom has been taking it for a few years.  It's hard to say how effective it is.  I feel like I would need a mom clone not on memantine to do a side-by-side comparison.  She does not have a lot of the difficult behaviors that some with AD display, and her decline has been more gradual than many, from what I read.  I can't really say what if any of this is attributable to the memantine though.

[Catbert]

Has anyone heard of a medication called memantine? My dad is just starting that. How'd it work for your family member?

My DH has been on Memantine and Donepezil for a couple of years.  These are the older Alzheimer's drugs that are supposed to modestly improve memory but don't do anything for the underlying disease.  Honestly, I haven't noticed any improvement, although that's difficult to determine when the cause is progressive like all forms of dementia.  Nevertheless, he takes them both.  These generics are relatively cheap with our insurance ($15 each for a 3 month supply) and haven't caused any side effects.

Sadly, I wouldn't expect any miracle improvements.

[iris lily]

My mom was on Aracept. She died in 2010  so that was a long time ago.

I have no idea if it did any good, but I suspect it may have been the cause of her severe leg cramps, the source of which was never identified.

[Catbert]

For those wondering,  donepezil is the generic for Aricept

[Just Joe]

Update: Mom fell again and needed stitches. Had she been 1/2" to the right she would have simply fallen but instead she caught the corner of a piece of furniture. Her days are great with the new meds. She is friendly and more easily managed than earlier this summer.

She has these tasks that characters from her imagination tells her to complete at night (sundowning). Lately that involves packing things for her childhood home and deliver them to relatives long deceased. I can distract and divert her efforts to leave. It's late, the drive is long, its raining, they aren't home right now, we'll go in the morning, etc. Dad has less success doing the same because of the caretaker effect.

She doesn't recognize us, doesn't recognize her house, and is losing the ability to find things like the bathroom. She is leaving the sink running. No comprehension of day vs night. Dad has to watch her every moment. Left to her own devices she tries to make coffee with random dishes and literal cups of coffee grounds. Dad makes it for her these days. Can't always put on her clothes. Can't find her clothes, etc. She walked out into the night the other night while Dad went to the bathroom. Told Dad I would cut dowel rods to put in the sliding door tracks but no, too much trouble I was told... -eye roller- That's irresponsible.

A good thing - she has been evaluated by the MC nurse and a room is reserved for her at the preferred facility. Move in date is dependent staff on cleaning and painting of the room. <2 weeks?

It can't come soon enough. My father has been very worn down by this. The fatigue shows. My sibling and I are still going on the weekends to help but it isn't enough. We've offered to do more but we both work and live out of town. I could take sick time. Sibling is more time limited right now. Home health care is a phone call away. Hospice is coming and hospice has offered volunteers who will come and sit with Mom. Dad doesn't want to do any of that. Waves us off. I've got this he says. He is lamenting her departure from the house into care while simultaneously admitting he can't do this much longer.

I've planted the seed about coming to live near us or towards sibling, bringing Mom to a facility closer to wherever he lands. Easier for me or easier for my sibling to look in on him often. I have worries though b/c he can be so opinionated and stubborn. A old problem. Money makes things easier - let's make easy choices.

We have the acreage to build him a cottage on our property. He has decided that any cottage should be a contemporary style very different from our farm house. DW and I are thinking long term - after he is gone - about whole property resale. Ugh. Why are we debating? Go with the flow. Maybe I'll let him just hunt for a house near us. Quality housing can be very expensive here right now, options here are limited. Easy to find an less desirable place which he won't be satisfied with of course. Let him spin his tires for a while so to speak. Then discuss it some more.

[Sibley]

Hang in there. Once your mom is in the facility, your dad will be able to rest and relax some. Even if he's at the facility all day long, he'll be able to sleep soundly at night without needing to check on her. It will change things.

[lhamo]

@Just Joe please consider taking some of your sick leave (or maybe FMLA leave, if you have it available?) to help your mom and dad through this stretch.

Your mom is falling a lot and your dad is stressed.  What if something more serious happens to either of them before you can get her into the facility?  Time spent with them during this tricky phase is a very good investment, in my book.

[Just Joe]

I've discussed this with my supervisor so they know what is on my plate so to speak. I can go in a heartbeat if necessary.

Dad is adapting reluctantly this week. He can be very much like a mule.

He gets frustrated b/c he can't coerce or command Mom into resting at night when he needs to sleep. He is finally adapting to blocking the bedroom door from the inside with his body so he can sleep (on the floor) so she will sleep. This is greatly helping them both.

Then later if he wants, he can climb into bed with her and she stays in the room even if she needs to visit the ensuite bathroom.

Now rather being a caretaker 24 hours a day, he is a caretaker for maybe 15-16 hours per day.

Sibling is there for two days this weekend. I'll go next weekend and offer to go a couple of times during the week. I'll spend some time out of the house Sat with Dad.

He could ask for the doctor to up her sleep aid pill but won't. See the mule reference.

In theory we can move her in a week or two.

Thanks for your support @lhamo