Dealing with parents dealing with Dementia

[Sliver]

Anybody have any recommendations for a nice hospice (preferably in the good end of town)? My mom is near the end (cancer) with days or maybe a week or two to go. She's sort of had her fill of the hospital - I think they thought she wasn't going to make the weekend so they just left her on the ward (taking great care of her, of course), but since she still has a bit of fight in her things aren't moving as fast as originally expected.

She's leaving earlier than she had planned and with some savings, so there is room in the budget for somewhere nice.

[D as in David]

Originally Posted by Sliver

Anybody have any recommendations for a nice hospice (preferably in the good end of town)? My mom is near the end (cancer) with days or maybe a week or two to go. She's sort of had her fill of the hospital - I think they thought she wasn't going to make the weekend so they just left her on the ward (taking great care of her, of course), but since she still has a bit of fight in her things aren't moving as fast as originally expected.

She's leaving earlier than she had planned and with some savings, so there is room in the budget for somewhere nice.

Sorry for what you and you family are going through. Check out https://www.countryhospice.org/ - it's not too far from you.

[Sliver]

Hmm, looks really nice, but I am hoping for something in Calgary.

[D as in David]

Originally Posted by Sliver

Hmm, looks really nice, but I am hoping for something in Calgary.

Is in-home palliative care an option? When my wife's cancer became terminal, we had toured a couple of hospices - Rosedale (very good and great reputation) and Southwood Care Centre on Heritage (very basic rooms) - but she ended up passing away at home. We received excellent palliative care through Hospice Calgary & AHS including having a nurse (RN?) spend a few nights at our place to look after my wife's needs during the night so I could get rest.

This was all 15 years ago so I'm not sure how valid my experience is to the resources and hospices you can access today but my cousin's wife passed away at the Okotoks hospice two years ago and their experience was very good.

Maybe have a discussion with your mom's primary caregiver to find out what in-residence palliative care may be available to you. I hope her passing is peaceful for her and you family.

[Buff]

I missed seeing new posts in this thread.

My condolences to you CC. Only 3 years of battling dementia but I bet it must have felt much longer!

Dealing with my dad and his dementia I've been lucky with how it affects him. He's been easy to deal with but the hard part is how it affects my mom. I never realized how much anxiety she has until my dad was no longer the calming force in her life. I commented to my wife about how my mom has been so bad with her anxiety for the last couple years and she pointed out that it's only been 9 months.... I'm getting the hang of it though and hope I can keep up!

[Sliver]

Originally Posted by D as in David

Is in-home palliative care an option? When my wife's cancer became terminal, we had toured a couple of hospices - Rosedale (very good and great reputation) and Southwood Care Centre on Heritage (very basic rooms) - but she ended up passing away at home. We received excellent palliative care through Hospice Calgary & AHS including having a nurse (RN?) spend a few nights at our place to look after my wife's needs during the night so I could get rest.

This was all 15 years ago so I'm not sure how valid my experience is to the resources and hospices you can access today but my cousin's wife passed away at the Okotoks hospice two years ago and their experience was very good.

Maybe have a discussion with your mom's primary caregiver to find out what in-residence palliative care may be available to you. I hope her passing is peaceful for her and you family.

Wow, losing your wife must have been really tough. So sorry...I can't imagine.

My mom is a bit too far gone for at-home care, but we did manage to get everything arranged for a hospice today and she should be moved there within a day or two, which is a giant relief.

[Buff]

We have struggled for over a year with the Home Care nurse. She didn't think my dad needed care because she said my mom can take care of him. She didn't seem to believe us or understand that my mom's anxiety was taking a major toll on her. Their doctor kept telling my mom that he can make it happen but the Home Care nurse kept denying it.

I think the Home Care nurse finally talked to my parent's doctor because we had my dad re-assessed last week and she said she would talk to her team but because he can dress himself (but needs to be told to) and he can shower himself (but needs to be told to - and we don't know exactly what he does in there) that he doesn't require care because my mom can cook, clean and do laundry. So we gave up hope and were going to wait until my mom started to need to dress him.

I got the call today that my dad is approved to be moved to a Dementia Care Cottage!

Now we have to get the ball rolling on choosing a place and applying for financial supports to make it easier for my mom. Exciting and nervous times ahead! I'm excited to take this stress away from my mom but worried how she'll cope with being alone... I guess she's practically been alone the last year since my dad is just a shell now but not having to constantly worry about him may really hit home that she's alone. How long will this last until she needs to move? She is in her 80s and has been going through a lot the last few years.... but finally something is happening to help her out!

[CliffFletcher]

Originally Posted by Buff

We have struggled for over a year with the Home Care nurse. She didn't think my dad needed care because she said my mom can take care of him. She didn't seem to believe us or understand that my mom's anxiety was taking a major toll on her.

That’s rough. We’ve had similar experiences with some of the staff at my dad’s nursing home saying he doesn’t need to be there. They don’t seem to understand that my mom not only has dementia as well, but suffers from severe anxiety. We’re hanging on by a thread just keeping her at home, living with my sister and special needs brother. Returning my dad - who ‘elopes’ from the care home regularly (and would do the same from home) - would only result in both of them winding up in a care home. So yeah, ‘why can’t you just take him home’ doesn’t exactly help matters - especially the gut-wrenching guilt.

You did the right thing by getting another assessment done. Waving that piece of paper around is what it takes sometimes to get a senior the care they need.

[CaptainCrunch]

Originally Posted by Buff

We have struggled for over a year with the Home Care nurse. She didn't think my dad needed care because she said my mom can take care of him. She didn't seem to believe us or understand that my mom's anxiety was taking a major toll on her. Their doctor kept telling my mom that he can make it happen but the Home Care nurse kept denying it.

I think the Home Care nurse finally talked to my parent's doctor because we had my dad re-assessed last week and she said she would talk to her team but because he can dress himself (but needs to be told to) and he can shower himself (but needs to be told to - and we don't know exactly what he does in there) that he doesn't require care because my mom can cook, clean and do laundry. So we gave up hope and were going to wait until my mom started to need to dress him.

I got the call today that my dad is approved to be moved to a Dementia Care Cottage!

Now we have to get the ball rolling on choosing a place and applying for financial supports to make it easier for my mom. Exciting and nervous times ahead! I'm excited to take this stress away from my mom but worried how she'll cope with being alone... I guess she's practically been alone the last year since my dad is just a shell now but not having to constantly worry about him may really hit home that she's alone. How long will this last until she needs to move? She is in her 80s and has been going through a lot the last few years.... but finally something is happening to help her out!

I'm glad you got the assessment done again, its a big step in getting a parent at least into the system. We had tremendous trouble getting that done because my Dad fought us all the way on it.


I just want to restate, the primary care giver (your mom) has probably suffered a great deal of trauma, and anxiety, its important to remember that going forward. That first days, weeks month when a long time couple is separated is really painful, I dealt with 2 suicide attempts by Dad and a disappearance.


The next round of trauma then happens as the dementia suffering slides. It happened to mom fairly quickly in memory care, and it really traumatized Dad to the point where he made up reasons to blame the family for her condition, and make up reasons to refuse to see Mom "She hates me", "She's cheating on me in there".


Sadly, and this is going to sound callous, but Mom finally dying really helped Dad recover and put things away, and though he's much better now, we've had him evaluated for Dementia, and he's showing severe and rapid signs of it.

[Locke]

Please make sure that you have the Enduring Power of Attorney and Will completed.

I will repeat this a thousand times. People have no idea how important this is.

[Buff]

Still waiting for my dad to be placed in dementia care. Waiting and waiting and waiting. Home Care keeps telling me that no space is available in the dementia cottages. I think he'll be moved soon though. He's been in the hospital the last two weeks with kidney disease. It's been up and down but every single nurse and doctor have asked why he wasn't already in dementia care. I told them we're told there is no room but one doctor said that's BS and someone isn't doing their job in helping us out.

He won't go home to the condo though and my mom is happy that she doesn't have to worry about that. She's happy to just come and sit with him and visit.

[CaptainCrunch]

Originally Posted by Buff

Still waiting for my dad to be placed in dementia care. Waiting and waiting and waiting. Home Care keeps telling me that no space is available in the dementia cottages. I think he'll be moved soon though. He's been in the hospital the last two weeks with kidney disease. It's been up and down but every single nurse and doctor have asked why he wasn't already in dementia care. I told them we're told there is no room but one doctor said that's BS and someone isn't doing their job in helping us out.

He won't go home to the condo though and my mom is happy that she doesn't have to worry about that. She's happy to just come and sit with him and visit.

We ran into the same system and were told that there was a long wait list in the public system. We had mom staying in the hospital for nearly a month, and as much as the nurses and caregivers tried its not a great situation for a person with advanced dementia, and mom had become incredibly volatile. We eventual put mom into a private memory care situation, though its incredibly expensive at about $7k a month. But at least she was being more properly cared for.


I will say that visiting a family member in any kind of memory care is a emotional and jarring situation. There were people with advanced dementia that were screaming and crying all the time and lashing out all the time. And it felt like my mom really degraded faster in there.



Frankly there's not a lot of memory care going on. They try to do stuff like games and such but for the most part they turn on the TV and the residents just sit there for hours and stare blankly at it.



But there were some exceptional care givers. I remember when my mom died, the worker that had spent a lot of time with her, and frankly had seen to worst of mom burst into tears, it was a bit heart breaking.



But no matter what your doctor says, and I'm not arguing, but there are not a lot of private beds for the elderly in the public system and they're flooded with desperate requests because private care is so expensive.



I do know that Staywell has shared public and private facilities in their fish creek center, maybe you can put in a call and at worst get your dad into private temporarily and get him out of the hospital.

[Buff]

Originally Posted by CaptainCrunch

We ran into the same system and were told that there was a long wait list in the public system. We had mom staying in the hospital for nearly a month, and as much as the nurses and caregivers tried its not a great situation for a person with advanced dementia, and mom had become incredibly volatile. We eventual put mom into a private memory care situation, though its incredibly expensive at about $7k a month. But at least she was being more properly cared for.


I will say that visiting a family member in any kind of memory care is a emotional and jarring situation. There were people with advanced dementia that were screaming and crying all the time and lashing out all the time. And it felt like my mom really degraded faster in there.



Frankly there's not a lot of memory care going on. They try to do stuff like games and such but for the most part they turn on the TV and the residents just sit there for hours and stare blankly at it.



But there were some exceptional care givers. I remember when my mom died, the worker that had spent a lot of time with her, and frankly had seen to worst of mom burst into tears, it was a bit heart breaking.



But no matter what your doctor says, and I'm not arguing, but there are not a lot of private beds for the elderly in the public system and they're flooded with desperate requests because private care is so expensive.



I do know that Staywell has shared public and private facilities in their fish creek center, maybe you can put in a call and at worst get your dad into private temporarily and get him out of the hospital.

Unfortunately we're in Lethbridge so Staywell is not an option for us.

I'm quite confident that my dad got the shaft from the Home Care nurse who assessed him. She didn't care that my mom was struggling to take care of him and denied our request to have him placed. It took over a year to finally get him approved but, again she didn't care that my mom was struggling to care for him and he is on a long wait list. I understand that there is a shortage of beds for dementia care but some circumstances get into a placement immediately. My neighbour was diagnosed with dementia in fall of 2022 and his wife died in March 2023 and he was placed in dementia care facitlity within days because he was alone in their house.

One thing that is awakening is how many people are affected by dementia. Suddenly I know so many people who have a parent or grandparent that also has dementia.

It's one area that Alberta, or maybe even Canada, is not prepared for. It's going to get bad for some families who can't find a place for their loved ones with dementia.

[RichieRich]

For everyone here, at what point do you 1) try to get the person into a home care? .. and 2) at what point do you NEED to get the person into home care?

[CaptainCrunch]

I wish there was an easy answer to your two questions but theres not. Because its complex, its not just the person sliding into dementia, but the primary care giver.

I mean with my mom the symptons kinda creeped in slowly, where she lost interest in things that she liked doing like cooking and reading and then became more and more absent minded.

At the same time my Dad did his best to hide what was happening at home.

Then suddenly one day it felt like all hell broke lose and we as a family were scrambling.

All I can recommend is getting your family doctor involved as soon as you start seeing symptoms and your doctor can refer you to not only the different programs so you can plan ahead, but also refer to a (geriatric) psychiatrist to do an evaluation.

Also if you can get that referral and your person is early stage enough they can try Lecanemab which can help slow down symptoms of Dementia.

[CliffFletcher]

Originally Posted by RichieRich

For everyone here, at what point do you 1) try to get the person into a home care? .. and 2) at what point do you NEED to get the person into home care?

Edit: As CC says, first step is to get an assessment from your family doctor.

AHS will send over a geriatric specialist to do an assessment. They’ll do tests on the senior, assess the home, and ask a bunch of questions about family support.

Then they’ll come back with a recommendation. It might be that the senior is fine with the current arrangement. Or they need homecare in their current space a couple times a week. Or homecare visits daily. Or they may recommend admission to residential care.

Once you’re in the system, they follow up with annual visits and assessments to see if needs have changed.

[CaptainCrunch]

Add on that the other thing that they could recommend is looking into respite care to give the primary care giver a break.

[Buff]

Originally Posted by CliffFletcher

Edit: As CC says, first step is to get an assessment from your family doctor.

AHS will send over a geriatric specialist to do an assessment. They’ll do tests on the senior, assess the home, and ask a bunch of questions about family support.

Then they’ll come back with a recommendation. It might be that the senior is fine with the current arrangement. Or they need homecare in their current space a couple times a week. Or homecare visits daily. Or they may recommend admission to residential care.

Once you’re in the system, they follow up with annual visits and assessments to see if needs have changed.

AHS sent a flaming pile of crap to my parent's place.

Can my dad dress himself? Check
Can my dad bathe himself? Check
Can me dad feed himself? Check
Does my mom cook and clean? Check

He doesn't need care.

My mom is burnt out.

Does he wander and get lost? No

Then she can just leave for a break for a few hours.

I'm over simplifying it a bit but that is the general gist of it.

I called Home Care to inform them of my dad being in the hospital and was told they don't have spaces for anyone but when the hospital is ready to discharge him the transition team will call.

He cannot go home. He'll wind up in the hospital again in less than a week.

Home Care in Lethbridge should be revamped. Fire all their people who make these decisions because care for people that need it is not happening.

[CaptainCrunch]

Originally Posted by Buff

AHS sent a flaming pile of crap to my parent's place.

Can my dad dress himself? Check
Can my dad bathe himself? Check
Can me dad feed himself? Check
Does my mom cook and clean? Check

He doesn't need care.

My mom is burnt out.

Does he wander and get lost? No

Then she can just leave for a break for a few hours.

I'm over simplifying it a bit but that is the general gist of it.

I called Home Care to inform them of my dad being in the hospital and was told they don't have spaces for anyone but when the hospital is ready to discharge him the transition team will call.

He cannot go home. He'll wind up in the hospital again in less than a week.

Home Care in Lethbridge should be revamped. Fire all their people who make these decisions because care for people that need it is not happening.

Dementia is becoming a bigger and bigger problems, and the provinces from coast to coast just don't have the resources to deal with it.

There are precious few beds for dementia patients in the public spaces and it gets far worse when there's a lock down requirement for patients suffering from things like wandering, or violent outbursts or worse.

There's a reason why the geriatric and geriatric psychiatry wards are packed in hospitals across the country, because there are no public beds, they're being warehoused in hospitals and draining their resources. Ontario for example will take people in the hospitals and shove them into the first public care bed they can find and that could be across the province and if you refuse it the hospitals will bill you for the daily costs of housing, at least that was their plan.

It sounds like the evaluation that they did with your Dad being able to clothe, feed and bathe himself, and he's not a wander threat, nor a violence threat (That you know about). Then the case worker doesn't have many choices on the recommendation, though I'm surprised that they didn't bring up in home care.

When my mom went into the hospital we talked to her charge doctor, and he was pretty sympathetic, and wrote up a form in terms of her mental competency and saying that she couldn't go home, that went a long way in getting a proper transition nurse. But by that point, my mom was pretty low capacity and had violence issues so they couldn't send her home to Dad who wouldn't have taken her anyways.


You mentioned that this is Lethbridge which brings up a whole other bunch of bed shortages. When I looked in the AHS site for a list of AHS facilities for dementia care there were:10 auxillary hospitals operated by AHS, in Lethbridge, Coaldale, Tabor Brooks etc. There were next to no Dementia Care facilities in Alberta that are run by the province. The mass majority of them are either fully private, which if you can find space can get your dad in quickly but the costs are very high, or Voluntary which is the not for profit and faith based facilities that would be cheaper.

Here's the list I found

https://open.alberta.ca/dataset/7f4f...ed-sla-ltc.pdf

But to give you an example St Michael's Health Center has 48 beds in dementia care in Lethbridge, Buffalo Grace Manner has like 100 beds in their supportive living facility, however they're only configured for mild to moderate dementia. Good Samartan has 10 beds for dementia patients. There's a reason why for profit senior care facilities and especially ones with memory care are springing up like weeds.

Personally seniors care throughout the country needs to be revamped badly, we have an aging population and you could argue that Dementia is an epidemic, when politicians are rambling about the health care crisis and doctor shortages and nurse shortages and long wait times for emergency and cancer treatment, don't you wonder why they don't bring up elder care?

If you can get your doctor to be an advocate for you with your dad with AHS it might help, but just based on the criteria that you listed your Dad would be at the bottom of the list in terms of urgent need.

With my mom it was either she would stay in the hospital until we could find a public space for her, which was unlikely even with a transition nurse, the other thing is that we could pick two facilities, and if they didn't open up and AHS found bed space for her in Edmonton, we could refuse once but after that we could lose our choices and place on the list. So we did what we had to do and put her into private care while praying every night that the money wouldn't run out before they found a spot. My mom was in private memory care for a year before she died and the transition team couldn't find a bed for her level of dementia needs.


It sounds like the hospital wants to discharge your dad, and they don't see a reason why he can't go home in his current condition, because your not on a transition nurses radar right now any kind of public situation is a long way off. The only thing I can recommend and I know it sucks, is to look at home care options to help your mom and your dad, look at occasional respite options to give your mom a break while your dad stays in a facility for a few days. Or start phoning voluntary non profits and seeing what they offer for permanent care.



But it would also pay to get the doctor and hospital treating your dad on your side as they can really help, working with your family doctor and getting referrals from there too. Because with the case workers they have a pretty high work load and stringent requirements.

[Buff]

Since being hospitalized he has deteriorated significantly. He's in a normal hospital bed now, can't feed himself or walk anymore. He's stuck there until he no longer needs acute care and then he goes to dementia bed in hospital for several weeks until a placement is available. The Hospitalist Drs who have seen him both agree that he can never go home again. So it's a matter of time but I'm not sure he has that much time anymore.

You have provided me more information than the person assigned to my dad. She told me that Good Sams has only one bed in Lethbridge for dementia care... There is also a lot more facilities that seem to offer dementia care than what she told me about too. There is a lot I haven't gotten into because I just don't have the energy to rehash it all. It's been a struggle.