Dementia - want to read your stories and guidance

[Just Joe]

Had a call from my exasperated father yesterday reporting that my mother had decided to walk to the grocery store ~5 miles away. He wouldn't let her drive b/c he finally admitted - she has early signs of dementia. He said early dementia but it is either a quickly progressing dementia or he is downplaying the seriousness of her condition. Again. She is quite advanced IMHO but I have little experience with the topic.

She couldn't tell him the name of the store where she wanted to go, nor how to get there and quite frustrated, she left out on foot after an emotional shouting match with him (at him). She says he is being mean to her b/c he won't allow her to drive anymore. My father is perhaps too blunt in his language (engineer) but he is loving and kind. He is determined to help her through whatever the future holds.

He called me and called 911. The police brought her home. Fortunately the office that assisted has training for responding to these kinds of cases. Due to the laws here, there is little they can force her to do unless she is a threat to herself or someone else. And walking to the grocery store at her age isn't somehow dangerous to her well being. Neither is walking out the back door into the forest apparently. That hasn't happened fortunately.

True to my parents' nature and perhaps their generation, this has been a growing problem that has not been discussed with me or presumably my sibling who I haven't spoken to in years at this point. DW and I have seen some of the signs but my parents have done a good job to hiding it - intentionally or not. My father's modus operandi has always been to downplay whatever challenges life has thrown at them which admittedly were few until COVID visited us all. They have always been very independent. He is probably used to her condition while it was very startling to observe as a visitor.

My estranged sibling lives out of state a day's drive away. Rarely visits my parents, Always requests my parents come visit them b/c convenience. And my parents have enthusiastically done so. That period is over - yesterday.

Sibling has long been the busiest person in North America I'm told. I'm being sarcastic here. Sibling is a bit dramatic and has long been overwhelmed by work and family and home (aka normal life) though their responsibilities are similar to those of anyone else.

DW and I are a couple of hours away. It is an easy run to their house. They live in a suburb of one of the state's larger cities so they have plenty of medical resources available to them. Money and insurance is not a problem.

Observing my mother yesterday revealed that she could not assist me making lunch. She did not know what to put between two pieces of bread. Could not find food ingredients in her own kitchen but she did know where the dishes were. She has lost weight b/c my father is having trouble encouraging her to eat enough. She has no sense of taste or smell since COVID several years ago though I will be studying to see if the loss of smell or taste is also a dementia symptom. Also diabetes. She is on one of the insulin management drugs (Ozempic?) that causes a person to lose weight. Supposedly that will be replaced with a pill this week by the doctor.

One obvious mitigation strategy would be for them to move closer to us. Our town has plenty of medical support and there is a larger metro area with perhaps the state's best medical services an hour or so away from us. My mother won't even consider this option. My father is very agreeable but thinks that letting her live at their house (since the 1970s) would be better b/c familiar.

Father admitted they needed to be closer to myself or sibling. I reminded him that my sibling seems to move about every 3 years due to spouse's career. DW and I have lived in the same town for decades at this point. We are settled. He agreed. But how to go about this?

I recommended that he allow me to help him (using their money) purchase a quality single level condo near us. We'll explain to her that this a weekend home like they have had in the past so they can see us and our offspring more often on the weekends. An opportunity for fun and adventure. And then stay here more often and for longer periods. Then either her dementia will progress and she won't be able to participate in any decision process (or need to move to some sort of assisted care facility) or she'll adapt. He is agreeable but is worried about her response. Also, move some of their appointments to local doctors giving them more reason to be local.

Next week will involve a trip to her doctor - if we can get her to go along. I spoke to him this morn and while she was as stubborn as a mule yesterday, she is quite agreeable today.

Meanwhile DW and I recently purchased a second vehicle to gift our eldest with our very old vehicle and to give us a newer, reliable car. New(er) vehicle enables us to be in two cities at once. One of DW's parents is also having serious health issues and DW may need to assist them. This is why we save money right? 

We would very much like to learn from your experiences and knowledge. Thank you in advance.

This is part of a larger effort to quickly learn as much as we can to help my mother be as comfortable as she can be at this stage in her life and to take some of the pressure off of my father.

[lhamo]

Sorry you are having to deal with this.

Do they have all their estate planning and related documents set up already?  If not, get that done ASAP before her condition declines further.

[secondcor521]

I'm sorry you're going through this.  It's a very tough road to go down.

I would encourage you to register and post over at the Alzheimer's forums at https://alzconnected.org.  Although it has Alzheimer's in the name, it is really a forum for people with all of the various diseases that cause the collection of symptoms we call dementia.

Everything you wrote sounds pretty typical of someone with mid-stage dementia.  A resource of symptoms by stages can be found at https://www.dementiacarecentral.com/aboutdementia/facts/stages.  I personally like the Global Deterioration Scale there as it feels pretty objective to me.  These scales give a rough idea - for example, my Dad shows most of the signs of stage 5, and about half of the ones from stage 6.  Every person is different, and not everyone shows every sign.

It's much harder when you have a sibling who isn't as helpful as you want them to be.  It sounds like your spouse is on board with helping, and there may be community resources around you (church, other family, support groups, etc.) that you can lean on.

The emotional responses of your Mom may very well represent being afraid by her confusing new illness.  Being patient, understanding, talking simply, talking slowly, talking calmly, and not arguing facts with them will help.  There are other techniques you'll learn.  You might also get and read "The 36 hour day" book where a lot of the techniques are discussed and a lot of good information is provided (https://www.amazon.com/36-Hour-Day-sixth-Alzheimer-Dementias/dp/1421422239).

If she doesn't already have it in place, it would be good to get her will, health care directives, DGPOA, etc. in place while she is still mentally capable of executing those agreements.  As long as your Dad is around, he can compensate for some of this, but - and I hate to say it but it's true - your Dad may also decline physically or cognitively or both as a result of his age and the stress and effort of taking care of your Mom.

The loss of taste/smell is probably COVID, not dementia.  But dementia patients in later stages do simply forget to eat and/or forget how to eat.

If your Dad is amenable, moving them closer to you will be helpful.  You'll likely face a bunch of times when you'll want to stop by, or check on something, or deliver something, or take them to the doctor, or whatever.  My Dad is about 12 minutes away and that's been a great help because it lowers the barrier of stepping in to help with whatever.

Describing the new home as a vacation home to your Mom is a good idea, and is sort of an example of a "fiblet", which are used regularly with dementia patients.  Once you get used to the idea and only use it for the patient's benefit, it's a very useful technique.

Oh, and it's also common for the spouse and extended family to downplay how far things have progressed.  A doctor visit (either an internist or a geriatrician) can give you the objectivity and the diagnosis, which, while crushing, is actually helpful also because you'll know a bit more about what the situation is.  Generally speaking, dementia is progressive and not cureable, but there are some medicines that may slow the progression.  And if you know the specific type of dementia, that can help with knowing a rough prognosis.  Finally, in some cases it might not be dementia and could be something treatable, like a long term UTI or depression, and treating those things that are treatable is always recommended even if there is dementia present.

Along those lines, I would point out to you that your parents might not live independently in the condo for very long.  You can have care providers come into the home, but it may get expensive, especially for standby medical care.  I'd encourage you to at least start taking a look at some of the assisted living places nearby as well, and moving them straight from their home into assisted living might be a good approach as well.

[BNgarden]

I'm sorry you're going through this.  It's a very tough road to go down.
...
I'd encourage you to at least start taking a look at some of the assisted living places nearby as well, and moving them straight from their home into assisted living might be a good approach as well.

I too am sorry you are facing this. 

In our province at least, if the spouse is able to assist their partner with some basic ADLs (activities of daily living), they can still move together into assisted living (with optional meals, laundry, cleaning services).  If the dementia is too pronounced, here the spouses often have to be housed separately (lack of appropriate units). 

When I related this to my father, who was in a situation similar to your dad, his number one priority then was to find housing that would take them both.  He then gained a new community (he's an extrovert), better environment to keep her safe, and meals and cleaning were taken care of.  She kept on doing laundry for some years before she forgot the steps needed. 

They also managed to move while mom could still 'map' the facility layout and come to trust people (staff, some residents) in it at her then stage (although that was largely dependent on my dad's proximity in the end).

She was extremely resistant to changes later in the disease progression, and not arguing her statements and distraction were key skills.  My father faced a LOT of resistance to change, even where they were made for her safety (e.g., support pole) and the safety of emergency personnel.  In the end, not changing things was everyone's strategic choice. 

A really knowledgeable geriatrician saw her when she went to hospital once, and laid out the terrain and prognosis clearly to my medical sister and my dad.  That was helpful for my dad to hear, although hard; nothing said was really unexpected (except after, noting that the doctor 'called it' regarding likely subsequent life span given her stage...).

Luckily, she died suddenly (3 weeks into a covid infection) versus a very long period of separation from my dad, which he was dreading.

I wish you and your loved ones all the best for options that suit their best interests.

[Just Joe]

Sorry you are having to deal with this.

Do they have all their estate planning and related documents set up already?  If not, get that done ASAP before her condition declines further.

I'm making a list of legal and medical things to check. I think he has all of her things in order, not certain. I fear my father believes this isn't so serious and it might get better. Ticking clock and all that.

THANK YOU so much everyone. This gives me alot of information to work with today. Makes me feel so much better.

DW and I discussed the situation over dinner and she is very supportive of whatever needs doing. I initially had in mind a slight uptick in my visit frequency but think maybe the answer will be weekly visits and then reassess whether more or less is needed. I want to make her more comfortable and protect my father who is coping with so much.

I noticed was walking a little hunched over yesterday. He confessed that his hip was aching a little. If he gets sick or has to go into the hospital for any reason, everything changes overnight. 

[iluvzbeach]

Just Joe, sorry to read you’re dealing with this with your mom. It is an awful disease, one that I think more & more of us will have to deal with as we assist our aging parents.

[AccidentialMustache]

Yuck. That disease is horrible. I'm sorry you're dealing with it.

Enjoy time with your mom while you can. It sounds bad, but as it progresses, the person you know as "your mom" may pass (ie be replaced by a very different personality) on long before the body of "your mom" passes.

My folks cared for dad's mom with dementia/alzheimer's. Not a good time for anyone. If professional help is in the budget, consider doing that. Caring from gram meant my folks didn't get as much time as they otherwise would have with their only grandkid (I'm an only child and there isn't a second grandkid coming).

[former player]

Sorry to hear about this.

Please don't underestimate the toll this is taking on your father.  Caring for someone in decline is a "boiling frog" situation: it progressively gets more time consuming, more physically demanding and more mentally demanding, and it can be hard to recognise just how difficult it has become for the carer, both for people looking in from the outside and for the carer themself.

If you can get your father support now, in his current home, that will make a big difference.  Some of this support could be a gardener, a cleaner and a meals service.  Some of it could be having someone to come in and sit with your mother or do activities with her on a regular basis so that your father can get a break (have a nap, go do a hobby, see a doctor about his hip, or do something social). At some point, although it sounds like not yet, having someone come in and assist with personal care (bathing, dressing, toileting) is going to become helpful.

Your father (and mother) may be resistant to this.  But getting help early is likely to make the current situation sustainable for longer.  And it gives your father a better chance of coming through this in decent health and able to maintain his own independence.  I would prioritise getting this help in place before starting on the condo idea (don't get me wrong, I think that is a good idea, but I think that putting the necessary support in place in their main home is both urgent and essential).

[2sk22]

Sorry to hear about this.

Please don't underestimate the toll this is taking on your father.  Caring for someone in decline is a "boiling frog" situation: it progressively gets more time consuming, more physically demanding and more mentally demanding, and it can be hard to recognise just how difficult it has become for the carer, both for people looking in from the outside and for the carer themself.

I second this. My mother died of a heart attack just a year and a half after my dad died of the side effects of dementia. While caring for him, she had absolutely no time to look after herself and stopped exercising. I suspect that the stress of caregiving plus the lack of exercise led to the worsening of her coronary artery disease which became so severe that no surgery was possible at her age.

[iris lily]

Is great that your father is open to change.

 As long as your absent sibling stays absent, it’s going to be easier than if she sweeps in to question decisions and sweeps out again or constantly harasses you about decisions being made. Being able to depend on her not being dependable may be better than having her there. But I imagine there will be clashes because she will have her own ideas about your parents’ situation.

We’re at me, I would be looking into assisted-living situation for them, skipping all of the in-house help in their current home or in any condo or townhouse you moved them to. There comes a point where they are completely resistant to change, so moving them to a place Where they don’t have to move again is wise ?

[SunnyDays]

I second the idea of looking at her meds.  Statins, to lower cholesterol,  are also known for sometimes causing dementia symptoms.

It's a quandary whether to move them now, nearer to you, or keep them in their own home with help, until her condition is bad enough that she qualifies for LTC.  Both have their pros and cons.  I think it would largely depend on your father's opinion.

My dad doesn't have dementia, but is almost 93 with pretty severe heart damage from a recent heart attack and refuses to leave his home.  He has home care coming in, but could use more help.  I live an hour away and spend a fair bit of time there, picking up the slack.  I also have a sister who lives 3 provinces away and has been of minimal help, and it is hard not to be resentful.

Hoping for the best outcome possible for everyone involved.

[secondcor521]

We’re at me, I would be looking into assisted-living situation for them, skipping all of the in-house help in their current home or in any condo or townhouse you moved them to. There comes a point where they are completely resistant to change, so moving them to a place Where they don’t have to move again is wise ?

This made me think of something else to add.

My Dad is 88 and has mixed Alzheimer's/vascular dementia.  He lived in an independent living apartment in a CCRC-type place for a long time, then moved to an assisted living apartment in the same CCRC, and recently moved into memory care.

If your Mom indeed has dementia (and it's likely she does, although other things should be ruled out by a doctor as already noted), then it is likely that she already would benefit from assisted living.  But at some point she will probably need a memory care facility.

So if you're going to look at places, I'd suggest looking at places that have both AL and MC.  That way (a) your parents can be close to each other or even in the same apartment depending on how their needs progress and their preferences, and (b) the move from AL to MC can be smoother because it's just to a different apartment rather than across town.

There are places that are AL only and MC only.  But since I think you said you live in a bigger city, there should be several places that are AL + MC.

[Catbert]

Alzheimer's Association which SecondCor referenced is a good resource.  Poke around.  Look for caregiver support groups for both you and your father.  In my area there are both in-person and online groups which generally meet monthly.

A couple of us have journals that discuss our lives as the spouse of an Alzheimer's patient.  Mine is linked below - just skip through 2021 when the focus was on me to 2022 when my DH was diagnosed.  Dee has one which somewhere starts discussing her spouse:  https://forum.mrmoneymustache.com/journals/(can)-musings-on-my-meandernings-towards-fire/

If they are going to make a move before a final move to memory care, I suggest sooner rather than later.  As time goes on she will lose the capacity to learn new things.  Your idea to call it a new "vacation home" is good one.  It's frequently called therapeutic lying.

She sounds beyond the early stage.  Maybe early-middle (assuming you're thinking of it as three major stages of early, middle, late).  Some organizations use more than three stages. 

I'll third or fourth the suggestion to double check that all her wills/trusts/beneficiaries/medical POAs/etc are set up and ready to go.  She is reaching the stage where she may have difficult making changes.  Financial institutions and notaries will be reluctant to let her make changes if she is clearly impaired.

Added to say:  It seems the link to Dee's journal doesn't work.  It is currently titled: [Canada] Living Life in the Unicorn.

[Bee21]

I am dealing with dementia in the family, it is horrible.  My mother seems to have a different type: it changed her personality completely and became this angry old woman we don't recognize. It's super stressful to be sround her as she lost her filter, is rude, says mean things all the time, doesn't tolerate anybody....I live on the other side of the world and father is really struggling with the changed circumstances.  Plus she has mobility issues and is in a lot of pain. In reality she would need a knee replacement,  but we are reluctant to get her one, as there is no guarantee she would follow the instructions to do the physio to assist her recovery,  and she also started wandering during the night.

It's super hard to see them like this.

your father will need help and emotional support. Nobody can look after a dementia patient 24/7. Getting help is neither easy, nor cheap. I suggest you start organizing it now, to give them the chance to get used to it, accept it etc, etc. Mum doesn't accept anybody. 

Ps. Thanks for the resource recommendations.

[Catbert]

Wandering is not my DH's issue.  Getting him out of the house is the hard part. But there are lots of techniques as discussed in books and at support groups.

Tracking.  The easiest(and least reliable) is using "location sharing" in Google maps.  You can see where her phone is which doesn't help if she doesn't take her phone.  It also sometimes is delayed, i.e.,   shows where the phone was 30 minutes ago.  Won't work without cell service.

There are apps that will track with greater accuracy.  I think it's Family 360 or something similar.  Still needs to take the phone with her.  There is a basic free version but is $10 a month or so with more bells and whistles.  Runs constantly so it uses a lot of battery.

Apply Tag which you can use if you don't use Apple technology.  Can be put on a key ring, slipped in a purse, hidden in a jacket or tied to a walking shoe.  Relies on being surrounded by cell phones so it doesn't help if she heads into a forest.

Keeping her in the house  As the disease progresses, the brain doesn't properly interpret what the eyes see.  So "hiding" a door or door knob could keep her in the house.  It doesn't sound like she's that advanced.    Techniques along this line include:
hanging a dish towel over the door knob so it's not "seen"; adding a second doorknob or lock elsewhere on the door that she won't notice; painting the door the same color as the surrounding wall so it's less noticeable; adding a trompe l'oeil painting of a bookcase or whatever so it isn't perceived to be a door. 

[Sibley]

I'm sorry you have to deal with this. Dementia is, in my opinion, the single worst thing that can happen to a person. Everyone says "fuck cancer", and yes it sucks, but it is nothing compared to dementia. Cancer merely kills the body. Dementia kills the mind and soul.

In terms of moving, you need to consider that being in her long time home and environment is helping her right now. Moving, even if its the best option, is likely going to cause a decline. So if they do move, they need to move to the absolute best location and just get all of that hassle out of the way. I'm not saying they're shouldn't move, it may well be the best option for getting them the help and care they need. But if they do, you need to assume and plan that your mother is going to get worse, likely immediately.

Your dad needs assistance. Even if your mother hasn't progressed to the point where she can't be left alone, the burden is massive. And a lot of it is emotional. Yes, she's your mother, but she's his wife first. It's emotionally devastating.

Consider what historically your mother has handled - he may not know how to do it, and even if he does it's added work once she can't do it any more. If she's always done the grocery shopping, meal planning and the bulk of the cooking, he's going to struggle and that's a real consequence if they're not eating well. Laundry, cleaning, paying bills, pet care, etc.

Your mother is mad about not driving. She's going to drive if she can get the keys. Plan accordingly. She's also going to wander again, and it will get worse as she gets worse. Talk to the police department and see if there's anything they have set up for this sort of situation. They may. It won't be perfect, but if they have a database of "people who are known to wander and its a danger to themselves", get her on it. Also see if you can get a gps tag or something so you can locate her when she wanders again. Check what kind of technology is out there for tracking kids, it may translate over.

Everyone involved needs help and support. Find a dementia support group(s) of some sort for your dad and for you. Local ones are invaluable for the local knowledge if you can find them - they're going to know best what programs are available, who the good caregivers are, where the supplies are most affordable, etc. But even without that, those are people who know what you're going through because they're going through it as well. A therapist might be a good idea as well.

There's a saying about dementia that is just depressing, but it's true. All dementia cases start differently, but they all end the same: in apathy.

You have to plan for your mother to progressively lose the ability to do everything. If she lives long enough, she will be as helpless as a newborn infant. I hope, for all your sakes, that she dies before it gets bad.

[ghsebldr]

I've seen some dementia in our families' recent history so I've been looking into it for a couple of years now. The best resource that I have found so far for the families and the caregivers has been Reddit sub dementia. The threads in this sub are from the day to day caregivers asking about specific problems and some solutions to those problems as lived by these  caregivers. I haven't been to Alz.com yet because our family history has been with Vascular Dementia.
 This subredit explains all five of the major types of dementia.
 Best of luck to you and your family through this awful disease.

[geekette]

My aunt lived in her home for a good long time with dementia, with a lot of paid caregivers (thank goodness she was a saver!)

At some point, it was determined that she needed to move into a memory care place, so instead of returning home from an outing, the caregiver told her there'd been a gas leak at her house, and they had arranged for a temporary place for her to stay (which was memory care). 

Sometimes you gotta do what you gotta do.

[Sibley]

My aunt lived in her home for a good long time with dementia, with a lot of paid caregivers (thank goodness she was a saver!)

At some point, it was determined that she needed to move into a memory care place, so instead of returning home from an outing, the caregiver told her there'd been a gas leak at her house, and they had arranged for a temporary place for her to stay (which was memory care). 

Sometimes you gotta do what you gotta do.

Therapeutic lying is one of those things that is controversial to the people who aren't in daily contact with dementia patients, particularly advanced dementia. The people who are doing the day to day care, if they're any good at their jobs, absolutely are going to tell that little white lie that means the patient doesn't get agitated.

Story time: my grandmother had dementia. By the time the family admitted it, it was firmly in the moderate stage. It was decided to move my grandparents into assisted living. My dad and I went up to help. While I was up there, my grandmother started speaking to me as if I was about 12. I was actually 18 or 19 years old. So, I corrected her. And shortly thereafter every member of the extended family came running because my grandmother was screaming that I was lying. Later that day, grandma was talking like I was in middle school again. I just went with it.

It's not appropriate for early stage dementia, and once they get bad enough it becomes not necessary. In between, yes it can be abused, but it's a valuable tool for patient care.

[deborah]

If the dementia is bad enough that the person can’t learn, they can’t learn to walk again after a hip or knee operation. That’s why my grandmother stopped being able to walk. Making sure they’re in an environment where they’re encouraged to continue to do everything they can allows people to retain their basic skills for longer. They can’t learn to be in a new environment either, and, as others have said, have a marked decline if/when they move.

People have a great deal of resistance to strange people coming into their home. My parents took far too long to have any carers, and far too long to get enough help to have a comfortable life. My father had dementia, and while they had good carers after a while, there was still a lot of stuff that they needed me to do, including staying with dad for a week while mum went away, from time to time. They were offered respite care in some of the facilities, but dad wouldn’t go there without mum. Fortunately, he died before it became more than the middle stage. My grandmother lasted about as long as you can with dementia, and for the last few years was just a body in a bed.

People do get misdiagnosed. My parents had a horror story of a friend who was diagnosed with dementia and put into a memory facility. The adult child sold the house and used the money for a fancy European trip for their family. When they came home, the friend had recovered, but she had nowhere to go because she had nothing left.

[Just Joe]

Sorry to hear about this.

Please don't underestimate the toll this is taking on your father.  Caring for someone in decline is a "boiling frog" situation: it progressively gets more time consuming, more physically demanding and more mentally demanding, and it can be hard to recognise just how difficult it has become for the carer, both for people looking in from the outside and for the carer themself.

If you can get your father support now, in his current home, that will make a big difference.  Some of this support could be a gardener, a cleaner and a meals service.  Some of it could be having someone to come in and sit with your mother or do activities with her on a regular basis so that your father can get a break (have a nap, go do a hobby, see a doctor about his hip, or do something social). At some point, although it sounds like not yet, having someone come in and assist with personal care (bathing, dressing, toileting) is going to become helpful.

Your father (and mother) may be resistant to this.  But getting help early is likely to make the current situation sustainable for longer.  And it gives your father a better chance of coming through this in decent health and able to maintain his own independence.  I would prioritise getting this help in place before starting on the condo idea (don't get me wrong, I think that is a good idea, but I think that putting the necessary support in place in their main home is both urgent and essential).

Thank you for the support and guidance. We talked for an hour again this morning on the phone. He is quick to wave us off but I'm encouraging him to let me come sit with my Mom, let me do some of the chores inside or outside, and for him to just go hang out with his "old dude hobby group". He said it Sat that he had not seen the guys for a while. Heck I'd be glad to sit and visit with Mom even if she doesn't have much to visit about. She likes to read, I'll bring a book. My eldest (grown) offspring would like to spend time with my father too. Pair them up, make sure they have a tank of fuel and send them off on an adventure. ;)

I'm planning to go down this weekend and take care of the yard and send him off to spend time with his buddies.

[Just Joe]

Thank you everyone. I'll be back on later ask a few questions. I need to capture the remaining daylight for a couple of chores.

You've all been so helpful.

[iris lily]

Thank you everyone. I'll be back on later ask a few questions. I need to capture the remaining daylight for a couple of chores.

You've all been so helpful.

I will also add something that I found very useful as a way to frame care of elderly parents: concentrate your resources on caring for the people. Their “stuff “is not important. In other words, don’t run yourself ragged by mowing the lawn, doing house repairs, Cleaning their house, etc.

Your care and concern should be directed to the people themselves. When theirs”stuff” becomes a burden, get rid of it.

[Captain Pierogi]

As someone who lost their dad to unexplained, early on-set dementia (age 61), my heart breaks for you.  There is no less difficult road ahead.  I was the sibling that was a 7-hour drive away with a newborn in the NICU while all of this went down.  And I still found a way to be an active partner with my mom in figuring out the what next.  I am sorry you can't count on your sibling in the same way.

I don't know where you are located or what your parents' financial situation is, but we had hard, fast lessons we had to address that I thought I'd summarize here.  We are in the U.S., and so long as my dad was receiving some sort of medical care, including physical or occupational therapy, his health insurance would cover expenses.  The second his dementia transitioned him to custodial care only, the cost was my mom's alone.  And memory care wards are very expensive.

Because my dad's dementia was early and unexplained, we had to plan as if he'd need care for 20 years.  So I helped my mom quickly spend down their savings on things that were on the 5+ year spending plan - replace aging car, replace old roof, install central A/C, etc.  Because the fewer liquid assets as he entered custodial care, the less he was expected to pay.  It was a horrible way to spend time when we should have been solely focused on him, but the reality was that my mom could potentially be driven to financial ruin, despite a lifetime of saving and frugality.

In the end, my dad passed after a mere four months, all for the best.  It's been 15+ years of healing and (for me) a bunch of therapy to deal with the stress and unfairness of it all.  Give everyone involved grace, most of all yourself.

[rosarugosa]

I'm sorry you are dealing with this.  A lot of good info and insight has been shared here already.  My 89 year old mother has Alzheimer's Disease, and I would say she is in later mid-stage, diagnosed in late 2018. She is still living alone in her own home, but with a lot of support from me, my sister, my husband, and a dear friend who we pay as a caregiver for 20 hours per week.  We are fortunate that we all work well together, and that Mom is sweet, grateful and as cooperative as one could hope for given her disease.  We all live nearby, which is also a plus. Mom mostly sleeps when she is alone and is not inclined to wander. I can share a few thoughts that might be helpful.

The learning curve/trajectory goes backwards.  This is so counter-intuitive and the opposite of anything we've experienced our entire lives.  I feel like I am often a day late and a dollar short, coming up with something that would have worked wonderfully 6 months or a year ago, but not today.  Abilities and knowledge are constantly diminishing, so some strategy that you put in place that works well today will stop working at some point.  For example, I used to be able to call Mom and remind her to take pills and eat breakfast.  Now I am setting breakfast down in front of her, putting pills in her mouth and coaching her through swallowing some water to wash the pills down.  An implication of all this is that change is harder for someone with dementia and will grow harder still, so I agree with others that a move to some type of graduated assisted living community sooner rather than later might be a good idea if finances permit.

Things you don't think of - a little gender bias here, but this might be more of an issue when a man is the primary caregiver rather than a woman.  My mother is the one who taught me all of my personal hygiene routines.  Who would have guessed that she was no longer trimming her toenails, and they were long and cutting into her adjacent toes?  Or that she was no longer flossing and brushing regularly?  We now take her to a podiatrist for nail care, and one of us coaches her through daily oral hygiene.

Hygiene aversion - this is definitely one of the most horrible aspects of the disease.  Most with AD develop an aversion to showering or bathing in general.  They seem to lose the sense of themselves or their clothing being dirty and in need of attention.  This is one area where Mom is not very cooperative; it can be quite an ordeal to get her to bathe.  Thankfully, our caregiver friend handles this, which is an absolute blessing.  It was probably also an early warning that we did not recognize, but she had a large garment rack full of clothes that had been worn but she didn't consider dirty enough to wash.  A lot of the garments had tiny stains that needed to be treated, but she didn't treat them and just kept adding to the rack as her closets were emptying out. 

@Sibley - You are so on target. Some folks think I'm awful for wishing for my mother to die, but what horrible version of love wants to see someone lose every bit of knowledge and ability they possess? Lose all their dignity?  Mom says all the time that she wishes she could just die, and I think that shows good judgment on her part.  She was a nurse, a very sharp and independent woman, and now she is just a sad, confused, diminished shell of a human being.

[Bee21]

It is also fairly obvious that my father in law started showing signs: he became fearful and confused most of the time. His younger sister is worse: she is switching between talking utter nonsense and having a brilliant,  witty, thoughtful conversation.  It's like switching the light on and off.

That part of the family refuses to acknowledge this problem. My father complains a lot as a coping strategy, which is also bad. He expects me to call every day to listen to his litany,  which is very distressing and super draining. I ended up depressed and in counselling, because I am not coping well with our inability to  help.  My father is also super depressed but he just gave up therapy. I am trying to persuade him to start again as he just gave up on life. Mum abuses him verbally on a daily basis,  no matter how hard he tries to look after her. She used to be a very kind, gentle person, so we don't recognize this rude and angry old woman who has the emotional intelligence of a toddler.

Being a carer for a dementia patient is the hardest thing. This long goodbye is the worst: looking after a loved one we no longer recognize. Being verbally abused all the time. The tears  and accusations when things don't go according to her wishes.. The physical aspect of care is also challenging, ie showers, toilets, lifting when she falls...

For mum it started with increased anxiety.  I noticed that her paintings became increasingly simple and naive. Her main topic is her childhood village. Sometimes what she said was just a jumble of words, but she can still do sudoku and crossword puzzles.  I demanded to have her assessed when her anxiety and excessive worry became unbearable. The week she was told about dementia,  mum became super sad and kept apologizing.  They did a sort of death cleaning. She chose the funeral outfit. They bought the burial plot ( i know.!!!! She insisted). She Wrote down recipes and taught my father how to cook his favourites.  This period of sadness lasted a few weeks, and they adjusted somehow.

[Sibley]

@Sibley - You are so on target. Some folks think I'm awful for wishing for my mother to die, but what horrible version of love wants to see someone lose every bit of knowledge and ability they possess? Lose all their dignity?  Mom says all the time that she wishes she could just die, and I think that shows good judgment on her part.  She was a nurse, a very sharp and independent woman, and now she is just a sad, confused, diminished shell of a human being.

I remember being in an ethics class in college and the topic of assisted death came up. I was one of the few who were very strongly in favor of assisted death, at least in some circumstances. My classmates were largely horrified. I had the perspective of my grandmother with moderate-severe dementia. They were 18-20 year old, most of them good Catholic girls, and completely unaware of the realities of terminal illness, dementia, etc. Even if they'd had family members with those types of conditions, they hadn't SEEN it. Those who did have experience agreed with me, because they got it. There are times when death really is better.

There was one girl who was incredibly nasty about it, the professor even intervened. To her credit, years later I got a facebook message from her apologizing. I don't know what happened, but she learned the hard way.

[rosarugosa]

@Sibley - You are so on target. Some folks think I'm awful for wishing for my mother to die, but what horrible version of love wants to see someone lose every bit of knowledge and ability they possess? Lose all their dignity?  Mom says all the time that she wishes she could just die, and I think that shows good judgment on her part.  She was a nurse, a very sharp and independent woman, and now she is just a sad, confused, diminished shell of a human being.

I remember being in an ethics class in college and the topic of assisted death came up. I was one of the few who were very strongly in favor of assisted death, at least in some circumstances. My classmates were largely horrified. I had the perspective of my grandmother with moderate-severe dementia. They were 18-20 year old, most of them good Catholic girls, and completely unaware of the realities of terminal illness, dementia, etc. Even if they'd had family members with those types of conditions, they hadn't SEEN it. Those who did have experience agreed with me, because they got it. There are times when death really is better.

There was one girl who was incredibly nasty about it, the professor even intervened. To her credit, years later I got a facebook message from her apologizing. I don't know what happened, but she learned the hard way.

I live in the Boston area and there is a strong Catholic presence here, so I do think a lot of people refuse to even open their minds to the possibility due to religious indoctrination.

Have you read In Love: A Memoir of Love and Loss by Amy Bloom?  I just finished it recently, and it was an excellent read about a woman who helps her beloved husband take the Dignitas/Switzerland route after he is diagnosed with AD.  I asked my mother early on if she wanted me to look into this for her, but she was hesitant, and she seemed fearful of the idea of traveling so far away.  I didn't push it for obvious reasons, but now I wonder if I shouldn't have pushed/coaxed a little more.  I should have also mentioned that my mother and I have a close and loving relationship, and she, me and my sister have always been on the same page about topics like death with dignity.  I'm not just an evil daughter wanting to off my mother, lol.

[Bee21]

I live in a state where assissted death is legal, but it is not available for people with dementia. One has to be lucid in order to make the final decision.

[Just Joe]

Thank you everyone. I'll be back on later ask a few questions. I need to capture the remaining daylight for a couple of chores.

You've all been so helpful.

I will also add something that I found very useful as a way to frame care of elderly parents: concentrate your resources on caring for the people. Their “stuff “is not important. In other words, don’t run yourself ragged by mowing the lawn, doing house repairs, Cleaning their house, etc.

Your care and concern should be directed to the people themselves. When theirs”stuff” becomes a burden, get rid of it.

Agreed. I'll do the chores so my father won't need to. He won't likely let them slide and thus he will wear himself out. I've decided I'll go to their house this weekend and take care of a few things that needs doing. Fortunately most everything is in good shape. The grass will need cutting perhaps, I need to check on the vehicle, and so forth. My father and I are big DIY guys so things usually aren't allowed to get too far behind.

Then I'll spend time with them. Obviously feel like time with my Mom is finite now.

[Just Joe]

As someone who lost their dad to unexplained, early on-set dementia (age 61), my heart breaks for you.  There is no less difficult road ahead.  I was the sibling that was a 7-hour drive away with a newborn in the NICU while all of this went down.  And I still found a way to be an active partner with my mom in figuring out the what next.  I am sorry you can't count on your sibling in the same way.

I don't know where you are located or what your parents' financial situation is, but we had hard, fast lessons we had to address that I thought I'd summarize here.  We are in the U.S., and so long as my dad was receiving some sort of medical care, including physical or occupational therapy, his health insurance would cover expenses.  The second his dementia transitioned him to custodial care only, the cost was my mom's alone.  And memory care wards are very expensive.

Because my dad's dementia was early and unexplained, we had to plan as if he'd need care for 20 years.  So I helped my mom quickly spend down their savings on things that were on the 5+ year spending plan - replace aging car, replace old roof, install central A/C, etc.  Because the fewer liquid assets as he entered custodial care, the less he was expected to pay.  It was a horrible way to spend time when we should have been solely focused on him, but the reality was that my mom could potentially be driven to financial ruin, despite a lifetime of saving and frugality.

In the end, my dad passed after a mere four months, all for the best.  It's been 15+ years of healing and (for me) a bunch of therapy to deal with the stress and unfairness of it all.  Give everyone involved grace, most of all yourself.

That is important. They have spent their whole lives making good choices to care for themselves in their old age. 

[Just Joe]

Thank you. I'm resisting replying to everyone individually so in the future if anyone else finds this thread useful, it won't be peppered with my responses.

In other news, a long time friend reminded me their parents also went through this so between IRL and this thread, we have alot of warm wishes, offers to help, and guidance. I can't thank everyone enough.

Please continue to share. The wisdom and emotional support offered here is probably good for all of us.

I am so thankful for this group of MMM people. I've read volumes of freely shared knowledge on every topic imaginable here. This is one very valuable corner of the internet.   

[secondcor521]

A resource I found worthwhile:

https://tala.org/wp-content/uploads/2019/04/Tam-Cummings-LLC-Handouts.pdf

Especially the DBAT starting on page 12.

[Chris Pascale]

My wife's grandmother showed early signs in her 60s. We realized it when she was driving from Texas to Louisiana for a visit and told us that she was driving and suddenly realized had no idea where she was going or who she was. She'd made the trip quite a few times, and not that much before this came to North Carolina and helped us move.

Recently, we provided hospice for her, and anticipating her arrival, I made up a bedroom as nice as I could, but very quickly learned we could only have a mattress and chair because she was at risk of falling out of bed, and anything other than the barest of bare essentials she would gather in the middle of the room and run the risk of tripping over.

After about a month we got a home health aide to come in 4 hours a day, 3 days a week, and it was a huge help.

[Dee]

Ugh, I'm saddened by the reality that there are so many of us here. Welcome to the club that no one wants to join, Just Joe. I have been journalling quite extensively about living alone with a spouse in the mild phase of Alzheimer's disease (well, actually a mixed dementia, predominantly Alzheimer's with some vascular thrown in). I can summarize the experience with this one recent quote: "It's all very crazy-making." And I've recently linked to an article explaining some of the ways in which it is crazy-making:

The Heartbreak and Hazards of Alzheimer’s Caregiving: https://www.scientificamerican.com/custom-media/davos-alzheimers-collaborative/the-heartbreak-and-hazards-of-alzheimers-caregiving/?utm_source=facebook&utm_medium=paid&utm_campaign=tfd_dac&fbclid=IwZXh0bgNhZW0BMAABHVoxr-nkhXbsPBB06NU-Yqg__1MX6dc8MAkudvQTr_l_8oKSwYzg3mqChw_aem_AReduFp2mtivJ716WlmkTXZ2HrjQ5-Kytc4i1_ui-yrWi3XwDwF6YIzvlvTby32YRw2VcHp9v_trPbI71IZzGAYI

It's by the author of a more extensive work, a book titled Travelers to Unimaginable Lands: Stories of Dementia, the Caregiver and the Human Brain (Random House, 2023).

A resource that is entertaining, moving and educational all at once is the CBC podcast Let's Not Be Kidding with Gavin Crawford.

There are resources in so many places, it can get overwhelming. In addition to what's been posted here, like the subredit, there are also Facebook groups and local dementia/Alzheimer's societies - the ones in Ottawa and other Ontario locations assign caregivers/family members to dementia coaches, who can recommend resources and offer education, support and training.

I've also seen my mother go through Alzheimer's and die of a massive stroke before she got into the advanced phase. At a point where she was still recognizing me, saying a few words (including "I love you"), able to walk a few steps with assistance and able to feed herself if her food had been pureed. So I'm with the other posters who've said that death before the advanced stage can feel like a blessing. It did for me, anyway.

I am loving that you are planning to help and be involved with both your parents, Just Joe. That will make a huge difference to both of them, I'm sure.

[Dicey]

I posted this the other day, but I had limited connectivity and it seems to have vanished.

My MIL would also hit the road when she was angry. We created a "Wanted" poster, with a good, clear picture, plus all her pertinent information. The police were thrilled to have such good information and found her quickly every time. Creating something similar now could be immensely helpful.

[Catbert]

Just Joe - You might consider starting a journal.  Aside from venting and getting support from others, it's a way to look back at what was happening when with your mom.  If you decide to journal, please let us know in this thread.  Sadly, I'm one who would follow your journey.

[economista]

Hi! My grandma has dementia and I just wanted to share one tip that I learned about - when a person has their mind set on doing something, don't argue with them because it tends to just escalate things. Instead agree with them, participate, and then redirect. So for example, if your mom decides that she is going to walk to the store and leaves the house to start walking, he can walk with her for a minute and say something like "that sounds like a great idea, do you mind if I come along too? Oh no, I forgot my coat in the house, do you mind if we go back so I can get my coat" or something similar. Once he gets her to go back to the house with him, there is a good chance that she may have forgotten, or that he can distract her with something in the house to keep her in a safe area.

[Just Joe]

Thank you everyone. Still following along and making a list.

I'm not sure I'm up for journaling yet but I will consider it.

Latest update: my mother made it to her diabetes appointment with my father. No conflict. He couldn't have a conversation with the doctor in private (w/o my mother being in earshot). I encouraged him to make a phone call from the garage if necessary. She needs to see someone. The GP visit is next week I think. I'm planning to spend the day with them on Saturday. Maybe I can gently push him to action on this. I want to be supportive but not pushy. Both of them have a strong streak of independence. Always have. ;)

Hope everyone is having a great afternoon. 

[CTOAUN]

Excellent information on this thread. This is a very difficult situation. Each individual and situation is very different depending on the person, stage, and type.  Echoing and want to add in no particular order:
1. Transitions are hard on the person and can cause decline. Minimize the amount of moves. Accessibility and access to support/assistance is important as physical and cognitive skills decline. All assistance scenarios are expensive and have pros/cons. Hired assistance is good because caregivers can be objective, more physically capable, adaptable to various functional changes due to experience and are replaceable (like shift changes). Your father cannot be objective, has physical limitations, ? prior experience, and is not replaceable.
2. Try to keep circadian rhythms consistent with sleep and eating schedule (diabetes friendly supplements may be encouraged over the course of the day depending on recall). If daytime napping helps (sometimes fatigue can exacerbate symptoms) then make sure it is short duration or of questionable quality like sitting up and not too late in the day
3. Toileting schedule and monitoring intake/output for incontinence at certain stages
4. Simple direct commands in a gentle tone (ex. “Sit down”
 instead of “don’t stand up”-the negative and extra words are difficult to process so they may just process” stand up”. Use non threatening non-verbal behavior (ex. Sit if the person is sitting). Be soft spoken. It is hard to escalate if the other person is not raising their voice…like how when someone answers the phone in a whisper you automatically whisper back. Mirror what you would like to get back basically. 
5. Enter their reality, redirect (find an alternate activity), and deflect.  It is cruel to try to force  current reality. If they think it is 1990 it is. Can you imagine how scary and unsettling it would be to think it is 1990 and your life is one way and have someone try to convince you otherwise? Although alternately I have seen patients terrified because they think the Holocaust is ongoing or their now deceased abusive husband is looking for them. The same techniques apply.
 -Imagine scenarios from your mother’s point of view to know how to redirect and deflect
6. You all need to figure out what activities for all your (father, mother, son)  roles are important to quality of life and prioritize participation in those within abilities. Like if your mother finds doing laundry meaningful put in a system to eliminate the hard parts of it (problem solving, recall).
7. People will more likely take the opinion of a professional rather than a family member who is saying the same thing.
8. Use the environment and tools to promote her participation and safety. Universal design concepts.
9. Skills move backwards from how they were developed like fork use declines before spoon use so use that as a guide to downgrade tasks
10. Harm reduction. If you cannot make a situation optimal, at least make it less harmful. Like having a low bed and soft surfaces if she is falling out of bed
11. Behaviors are communication. Spitting out certain foods could be a sign of declining dentition and they just can’t chew meats, etc.
12. Play the long game with assistance needs like eating and bathing. It doesn’t have to be a one and done thing. The less people eat the less they want to eat so encourage small amounts at a time.
13. I found this book helpful for hygiene decline although it may be dated now. https://www.amazon.com/Bathing-Without-Battle-Person-Directed-Individuals/dp/0826101240

[secondcor521]

On #5 above, I think most people start off correcting their loved one - "No, Dad, you just ate dinner, not breakfast" or whatever.  But what you can quickly realize is that most of what the PWD is incorrect about just doesn't matter.  If they want it to be 1990, then it is.  If they said they had breakfast but it was dinner, OK, no harm done.  If he wants to call his telephone a computer, that's OK because I can figure out what he means.  If he talks about needing to going to work, okey doke, the caregivers won't let him go anywhere because he's in MC now.

I only correct my Dad for two reasons:  If it's a matter of his personal safety, like if he thinks he can do something without help when I know he needs help or else he will fall.  The other thing was that sometimes he would get a little down on himself because of his dementia and call himself stupid for being confused or forgetful.  I corrected that by saying that he was one of the smartest people I know, but his brain is old and not working as well anymore.  Even in these cases, I try to be positive, patient, understanding, and compassionate, but still firm.

[Catbert]

Your dad or you can email her doctor before her appointment.  My medical provider has an app (of course they do) that enables you to contact your physician.  I log into my DHs account to email the doctor signing it "Catbert, Mr. Cat's wife". 

What's the age of your parents?  It doesn't really matter - just curious.

[Fiddlestix]

I went through this exact scenario 10 years ago. My mother lasted 8 years with the disease, from when we first noticed small problems. After 4 years we had to place her as she was stronger than my father at that point, and was threatening him, eloping, all that fun stuff.

The advice above is all very solid. I would just add that her doctor can write a hard copy letter saying that they (the dr) will not allow her to drive, and they'll put a reason down. Doctors do this all the time for our aged loved ones and you can whip that letter out anytime you need it. That way the doctor is the bad guy, and you can commiserate if needed, but the letter ideally helps you keep her on track.

I don't know where you live but touring several facilities and getting on some waiting lists may be advantageous. Here in PA, my father entered the CCRC as a healthy independent (he had a little apartment), and my mother went straight into the memory unit. Dad really liked that he could visit her so easily - just walk over.

Things to say to your father and yourselves: There in the CCRC or assisted living faciities, they have folks trained to take care of memory patients... and they only work 8 hours a day! Not 24/7 as your father is at the moment. Your mother may thrive in the right situation.

Use the validation method in conversations with your mother. We did not at first and it was awful.

As the disease progresses, those little glimmers of recognition or even a smile or a kind word mean a lot. We kept a journal of the cute, nice and even funny stuff that my mother said while she was still speaking. Believe it or not she swore a few times, after a lifetime of never swearing. Didn't even know she know what those words were.

I wish you the very best of luck and I really feel for you and your family. As they say on the alz.org forums, 'Welcome to the club no one wants to be in' - I'll be sending my best your way.

[sonofsven]

A good friend went through this recently with her partner, who was diagnosed early, and they were both very proactive in setting up their residence, getting treatment consistently, even getting regular cognitive testing and donating his brain to science upon his passing.
They did all this, including formulating his end of life wishes.
The disease progressed slowly. We went out to lunch monthly and we could all see it, but he was still able to participate, it just took a little longer.
And then he got sick. I don't remember what it was exactly, and I don't want to ask, but it was serious enough to put him in the hospital for a few days.
And then, literally overnight, he went from slowly declining to full on Alzheimer's.
He was just about "gone". I remember after he got home and it was obvious that he had taken a big loss cognitively, on a Friday my friend watched him walk out the front door and around towards the farm fields, where she went and collected him. When she told me about I said that I hoped he wouldn't just take off in the middle of the night, but that seemed so out of character that we kind of laughed it off.
Sure enough, that Sunday she got a call at 2am from the hospital; he had been found about a mile away in a driving rain storm standing in the ditch. He had a little satchel with him, he packed his reading glasses, a pocket knife, and a map of North Dakota, where he grew up (but we are in Oregon!).
We had a bit of a laugh about it, and the  next day I installed double key deadbolts and alarms on every exterior door.
They had trouble finding in home care assistants in our rural location, so they moved temporarily to the suburbs where help was more available.
Luckily for all he passed about nine months later.
One thing he was adamant about was that he didn't want to be a drain on his partner, he would have chosen death with dignity first, but his transformation was so fast there was no chance.
One other funny anecdote from a sad situation, my ex FILwas in a memory care for seven years. My ex MIL visited nearly every day, mainly to harass the staff 🤣.
One day she opened the door to his room and found him with a lady who was also out of her wits and they were full on making out!
So I guess there's hope for all of us

[secondcor521]

The sharp declines after hospitalization is very typical.

As is the making out (and more).  When my Dad was in AL, the lady across the hallway developed what we'll call a crush on him.  It's an interesting dance because the facility allows it if both are consenting, but if it's one-sided then they both get called into the principal's office (metaphorically) where the actor gets admonished.  In my Dad's case it was definitely one-sided so the facility and the lady's caretakers intervened.

[Sibley]

Depending on the type of dementia, the stage, and the person's underlying personality, you can get some very unexpected behaviors. Inappropriate behaviors are very common. Its often very distressing for the family (omg, my mother is going around trying to kiss all the men!! type responses). This is part of why having unrelated caretakers can be so important. The hired caretaker doesn't have the emotional entanglements.

My grandmother spent her life being pretty nasty to my mother (and many others) and overall a very difficult person to deal with. Once the disease progressed, for a while she became very nice and friendly. Then the disease progressed again and any personality was lost.

[Just Joe]

Thank you everyone. Still following along. I'll see my parents this weekend. No new news.

[Sibley]

Well, I have some new evidence that my dad is getting worse. He spent most of the day just sitting at my house yesterday waiting for a package (I didn't ask him to, but had mentioned the package was coming and I would have to deal with it later). According to mom, he had a meltdown when he got home from the stress of not being home all day.

He's been not wanting to go places. I guess my house counts as going places. Sigh. Big worry is that they have a short trip planned this summer, and I really don't know how it's going to go.

[Catbert]

Well, I have some new evidence that my dad is getting worse. He spent most of the day just sitting at my house yesterday waiting for a package (I didn't ask him to, but had mentioned the package was coming and I would have to deal with it later). According to mom, he had a meltdown when he got home from the stress of not being home all day.

He's been not wanting to go places. I guess my house counts as going places. Sigh. Big worry is that they have a short trip planned this summer, and I really don't know how it's going to go.

Is the trip something that can be cancelled?  My DH with AD no longer travels.  We (I) initially thought he'd be fine with weekend trips to Palm Springs where we previously owned a second home.  Nope, didn't work.  Being in a hotel room was stressful for sleep which he struggles with anyway.  We are both at an age that we can't go, go, go for 14 hours a day.  We need downtime.  I can read and putter around on the computer.  He no longer can.  He records and watches lots of old TV shows and movies at home.  Hotel room had a TV, but not his recording.

[Sibley]

Well, I have some new evidence that my dad is getting worse. He spent most of the day just sitting at my house yesterday waiting for a package (I didn't ask him to, but had mentioned the package was coming and I would have to deal with it later). According to mom, he had a meltdown when he got home from the stress of not being home all day.

He's been not wanting to go places. I guess my house counts as going places. Sigh. Big worry is that they have a short trip planned this summer, and I really don't know how it's going to go.

Is the trip something that can be cancelled?  My DH with AD no longer travels.  We (I) initially thought he'd be fine with weekend trips to Palm Springs where we previously owned a second home.  Nope, didn't work.  Being in a hotel room was stressful for sleep which he struggles with anyway.  We are both at an age that we can't go, go, go for 14 hours a day.  We need downtime.  I can read and putter around on the computer.  He no longer can.  He records and watches lots of old TV shows and movies at home.  Hotel room had a TV, but not his recording.

It's totally optional. It also won't be cancelled. I have no control over that. I may be able to introduce the idea of dad staying home and just mom going, but he has stated he wants to go several times. Realistically, I'll arrange my life so that if necessary I can get there in a hurry. It's a 3-4 hour drive from me.

Luckily, dad watches videos on youtube on his phone. That is portable. And the trip is to where they lived until a few years ago, so it's familiar ground at least. However, they have zero, and I mean zero, support network there, even though they lived there for 60+ years.