Dealing with parents dealing with Dementia

[CaptainCrunch]

I wanted to bump this up, just so I can maybe continue to guide people through this journey, and maybe there's one thing here that can help anyone else struggling with this.

With the overall cost of my parents in a private facility being about $14,000 per month, the burn rate is incredible. The goal is still to get my mom into a public space, which while not free, really only costs us about the amount of her pension benefits plus a little bit.

The other thing that we did was start exploring public spaces that were close to my Dad that made more economic sense, plus it was about more then the money.

I noticed in the facility that my Dad is they really don't have a lot of activities and programs that people participate in. They do have card games and movie nights and some other things, but because the people on the assisted living side aren't super high functioning participation just isn't there, must people just sit all day or sit in their rooms and watch TV. Even when they gather, there aren't alot of active conversations. And my Dad for all of his issues and his advanced age, is fairly high functional.

So we found a facility close by at about half the cost because the people living there are high functional and don't need a lot of help. They have way more activities and better arts center (my dad likes to paint) a better fitness program, they have guest speakers, and this is huge, his current facility doesn't really have church services, but this one does.

We found out that a lot of things that were provided as part of the fee's for my Dad in his current facility (perscription drugs, people checking in, making sure medication is being properly taken and administered) can be handled using AHS free of charge services. This facility is about 5 minutes from where my mom is, so we can use senior access Calgary buses which is relatively cheap, and overall we are saving more then half of my my Dad's costs. Now I want to be clear, the current place that my Dad is saying is good, but the costs and lack of activities is key.

Also on top of it, the new facility has a support group for people with a spouse suffering from Dementia, and my Dad has agreed to participate. Which is great. So we're moving him at the end of the month.

On my Mom's side, we've been working with a AHS transition nurse on finding her a public facility. We've been told that its a long waiting list, especially since my Mom is fairly far gone, and can be fairly aggressive. So it needs to be a secure facility. We've put my mom on a list for 3 facilities close to where my Dad is going to live.

The transitional nurses are invaluable by the way. Beyond navigating the process, and they know the system, she's also guided us on government benefits that are not heavily advertised. Do you know that there is a program for spouses that are split into other facilities?

Now onto the tougher stuff. Like I said my mom is pretty far gone, when we go to visit her, she's mostly asleep. She goes through periods of extreme extreme aggression. My Dad has good visits and bad visits where he's decided to just give up on the whole thing and not see her anymore because she's so hurtful. But he's slowly starting to understand that this is dementia and not the woman he married, and that he can go back the next day and she's a different person.

With an aging population, the provincial governments are going to need to find a way to build more seniors bed. Most people can't afford to pay 10's of thousands a month for two parents to live out the end of their lives with dignity and good care.

I think that's it, I'm hoping that there is a nugget of help or advice in there somewhere.

[I-Hate-Hulse]

That was some great insight and guidance on how to make the numbers work CC, thanks for sharing.

$14K / month for two is stunning. I'm thinking a portion of this (dementia care) counts as a medical expense for tax purposes?

Agreed - this is a well overlooked issue by Governments.

[CaptainCrunch]

Originally Posted by I-Hate-Hulse

That was some great insight and guidance on how to make the numbers work CC, thanks for sharing.

$14K / year for two is stunning. I'm thinking a portion of this (dementia care) counts as a medical expense for tax purposes?

Agreed - this is a well overlooked issue by Governments.

There's a disability write off that we can apply for on this years pension that should help a bit.

Private care is tremendously expensive, especially memory care can be really expensive and specific.

When you add in needing a secure facility, instead of in a general setting where they need constant help and supervision, its really pricing.

Add on, it was my mom's birthday this weekend so we decided to have a Pizza party because Mom used to love Pizza, so we bought in a Pizza and bought some cupcakes.

My Mom is an on and off eater. But she actually destroyed the Pizza and had 4 pieces and a cup cake which made us all happy.

[Lubicon]

Originally Posted by I-Hate-Hulse

That was some great insight and guidance on how to make the numbers work CC, thanks for sharing.

$14K / year for two is stunning. I'm thinking a portion of this (dementia care) counts as a medical expense for tax purposes?

Agreed - this is a well overlooked issue by Governments.

Perhaps a typo on your reply (Or the Captains original message) but he says $14k/ month if I read it correctly. Which just makes your point about it being expensive even more valid. My wife's grandmother (Saskatchewan) had to move out of her assisted living building last year as it got too expensive and that was 'only' about $4k/month.

[CaptainCrunch]

yup it was 14k for both per month.

[Buff]

Well this talk of costs scared the hell out of me.

My dad needs to get care. My mom just can't deal with him anymore. He really isn't that bad off but my mom has bad anxiety and can't cope with my dad not being the same. It has been a terrible stress on me. The doctor said that my dad has no capacity to care for himself but the health care nurse assessed him and said he doesn't qualify for any supportive living. We can put him in a senior's lodge but we have to pay out of pocket and there is no support for the costs.

Was with my mom for a doctors appointment to deal with all her health problems, which are all direct result of her anxiety. He casually brought up that she can move to the same lodge and not have the stress of cleaning or cooking all meals, can be in the same place and visit every day without having to travel across town or worry about weather, etc. etc. She was all for that.... so now we have to find out where they can go, how much they can afford, and what the options are. I'm in a terribly busy time at work and can't stop and spend 30 minutes to call a place or two and the admin for all the seniors lodges seem to arrive at work later and leave work before I do so I just don't have time to get the ball rolling. My mom thinks it is all up to me and won't call herself.

At least she has gone from calling me 10-12 times per day to only once per day after that last doctors appointment. I have some breathing room now.

[pylon]

I really don't have anything to add except....

You're a good son CC.

[RichieRich]

How long is the approx wait time from determined need to placement in a care facility?

[CaptainCrunch]

Originally Posted by RichieRich

How long is the approx wait time from determined need to placement in a care facility?

It depends on the need. But we were told by the AHS Transition nurse, 10 monthsminimum for a private bed. Shorter if you're willing to do something like semi private where they would have a room mate (Impossible for my mom, it would be like a UFC octagon in there.). For my mom because she needs a secure facility for a person with severe needs, longer then a year.

The other thing is triaged based on needs and finances.

[CaptainCrunch]

Ok, I needed to bump this because if I can help other people navigate this nightmare, I feel better about things.

So what happens when a person with Dementia becomes "unmanageable"? It can certainly happen as loved ones go through the different phases of Dementia. When they become violent, or a danger to the other people in the facility like care workers or fellow patients.

It happened with my mom when she suddenly became really aggressive and attacked workers and patients.

We had worked very hard to get my mom on a transition to a public space, filled out the paper work were assigned a transition nurse by AHS picked your 2 preferred facilities. But that all goes out the window if there's threat of harm or violence. Your parent, loved one becomes a liability issue. And I get that.

So now what happens is the facility who has done a great job to this point, can't keep your parent there, they're not suited to deal with violent patients, and even if its rare like once or twice, its still a record.

The first thing they do is if there's beds available will ship your parent off to a hospital if they can for safe keeping until another facility that's can deal with extreme care can be found. I hate to say it but there aren't a lot of facilities that can handle it. There's a good chance that your parent will go to the hospital then to geriatric psychiatric care in a hospital.

All your choices for long term care that you picked out to keep your parent close to you or other loved ones, that's gone, your parent will have to go through a mental health evaluation and they will decide the where and how long til they move, your choices are really stripped from you.

I think the main thing here is to just be prepared for this kind of thing to eventually happen, it might not, but Dementia is really not consistent at all in how it works or progresses.

But at some point, the control is going to go from you as a family to the system, and you won't have a lot of choices or arguments. And that's the awful part. The thought of my mom dying in a hospital or mental health unit is devastating. The effect on my Dad, and we've been keeping him from this for a few days as we moved him to a new facility is going to be shattering.

[Ozy_Flame]

My sympathies, Cap. I can only imagine navigating this is an anxiety-inducing, overwhelming, and often frustrating experience.

My spouse works in mental health with the patients you describe, and it is no small challenge. The patients themselves are one thing, but the rest of the family, the logistics, the system, and the availability of the right care are all things that everyone involved has to deal with it. Black and white answers are never as available as one thinks until they're knee-deep in the scenario - like the one you're in.

Wanting control over your family's situation is all anyone wants, and you're not alone. Note that you and many other families are going through the same thing, and if you can find it in yourself to be the rock that your family needs - that's an incredible feat.

I may advise raise concerns where need with their physicians and healthcare workers, but also know that those decisions aren't made lightly either. I guarantee there are humans working the other side of the coin that want the best for your parents too.

Managing dementia is a family and community effort. And you're never alone - even if at times it seems like it.

I hear you. I definitely hear you.

[Sliver]

JFC, that sounds so crappy. What are/were your parents' thoughts on MAID? I mean, I can't imagine a single human wanting to live like that.

My friend's dad was diagnosed with dementia and took matters into his own hands before it progressed very far. That's what I'd do, too. No way in hell I'd ever live in an institution in such a state of decline - wouldn't want my kids to see me like that and I wouldn't want my family to go through the stress. Not sure if that sounds harsh or not, but I don't mean it to. I've lost my dad, my brother and now my mom has stage 4 cancer, so I have been down this path a couple times.

FFS I was thinking of getting a DNR medic-alert bracelet just the other day. I'd really rather not take a chance on living my life playing with anything other than a full deck.

[CaptainCrunch]

MAID is irrelevant to my Mom, the bottom line is she can't make that decision due to mental capacity, and even with poa etc, we can't decide for her.

[D as in David]

I wasn't aware that MAID could be used in cases of dementia. Great that it is but I imagine a bit more of a challenge setting it up and executing it than for a terminal illness that doesn't affect them cognitively.

[BrolyTheUnholy]

MAID can only be used in cases of dementia where the person is still able to consistently be cognitively capable, which rarely happens. By the time someone gets to the point of deciding that they might want a medically assisted death because of worsening dementia, they're usually well past the point of being considered mentally capable enough to make that decision. It sucks, but it also makes sense.

[CaptainCrunch]

I wanted to bump this, not for anything but just as we go through this exhausting and heartbreaking journey with both of my parents and the rest of my family, maybe other people sometime down the road will see this and there's something helpful.

We had to split up my parents due to financial neccessity. We moved my Dad to another senior home about 10 minutes away because in effect it would save the family about $3500 a month, which is huge for all of us.

First of all to my mom, Last time I updated, I talked about my mom getting violent with the staff. At this point, they are looking at moving her to another facility that's better with dealing with extensive needs people. But because of the shortage of public beds in this province its probably going to take a year to find a space. So while we wait, my mom is pretty much sedated to keep her calm.

When you combine this with her advanced dementia, she's now entered a stage where she's not really communicative, she tries but she doesn't make sense, she doesn't know who we are, and she pretty much sleeps all day and sometimes wanders at night. She's also had a few falls, thank god she hasn't been hurt badly. Once in a while my sharp tongued sharp as a whip mother will peek out from behind the fog, but that's few and far between, and our visits to her are usually very short, as we feed her some of her favorites and chat with her with little response and then she tires out and goes to sleep.

My Dad is a different story. When we moved him we encouraged him to go see her whenever he wants, take a cab, whatever and on Sunday's we'll all visit. But it created so many issues because frankly, I don't think my Dad will ever understand Dementia, and he can't stand to see her in the current state and he manufactures things.

For example we set up a Christmas dinner and it wasn't great because Mom was very distant and irritable and tired. Dad decided to stay with her after we left, which was mistake number 1. And I got a call later that night and this is the common thing that she hated him, was cruel to him and clearly she's cheating on him and has moved on and he was done with her.

Frankly for a child even an adult one hearing that is not cool and no explanation was going to suffice.

He also accused the staff at my mom's facility of not doing their jobs and taking care of her.

Now in the past, I would try to calm him down, try to convince him otherwise, and tell him to take a couple of days away and get back to seeing her, because when he's normal he's very good at talking to her and getting her to eat etc.

But this time, I unloaded, I've become the primary with my Dad because and I don't blame them, my sisters have had enough of this act, and my one sister who I don't talk to has completely disconnected from mom and dad except to lecture us all on what we're doing wrong.

Anyways, I decided that I needed a respite and avoided my Dad's call for a few days, because it was always the same, he'd ask if we visited her, if she talked about him, and then go on a rant about one of the workers there that she was having an affair with. For crying out loud she's 89 and in deep dementia, she has zero interest in the people around her and sleeps like 20 hours a day.

I finally talked to him and tried to be sympathetic, I get why he's doing it, because to see her in this state is hard. But I told him if he bought up the cheating stuff that I was hanging up, I didn't want to talk to him about it. I told him not to go see her on his own because he was manufacturing reasons to make it about him and his hurt feelings.

I told him when I was good and god damned ready and my sister in Calgary was ready, we would take him down twice a week and do family visits and that's it period end of story.

Because I realized these things.

My mom tires out quickly and when she's tired her mood alters and she become moody and distracted and my dad would read it as she hates me etc. So we would go and visit if she was sleeping we would try to wake her, if she didn't want to we'd leave and try again at the next meeting. If we were visiting and we could see she was getting tired, we would end the visit by walking her to a care worker who would then sit with her or put her to bed.

That he had to change his mind set. My Sister and I know that 90% of the time Mom has no clue who we are, so we chat with her, bring in a take out pizza or a burger as a treat and act as a care giver. Dad has to realize the same thing, and if we see him getting emotional that we're taking him out for a walk.

At the same time, I told him that on the day's that he's not visiting he's got to fill his days. Not sit in his room and mope and watch TV. I mean he does his painting which is great, but he does it by himself.

I told him that the place he's at has a church service, he's going. That he has to sit down and eat dinner with people instead of by himself, and that he is to take his books down to the common area to read and talk to new people.

Here's a warning and a thought, if one parent has dementia its painful for the others and if they have trouble comprehending what is happening they will literally make it about them and their feelings, and if its too painful they'll make up reasons or lie about things or make up fiction to make it not their fault. I know this doesn't happen in every case, but talking to some folks that work with dementia its common.

Ok here's the epilogue in the holding my breath while holding a grenade with no pin in it. We took Dad out to see Mom yesterday, his first visit in three weeks. We took him for a nice lunch first. Then we again discussed how it was going to work. It wasn't a long visit, no more then 45 minutes, we bought Pizza for her and she really didn't like it this time. Appetites and flavors change. We chatted with her about literally nothing, my Dad helped her eat, and it was a pleasant enough visit. But when we saw her getting tired, we cut the visit off, and coached Dad not to tell her that he would see her in a few days, or to cry in front of her. Then we left, let him have a cry and told him that from now on we would do Wednesday and Sunday visits.

He seemed to feel that it was a good visit and was satisfied.

However and this is phase two of my so called brilliant advice.

Never thing that the issue is solved, never thing that the positives of a visit are going to carry out. That grenade could explode again, we could go in and have a really bad visit and things could get dark again.

If you are in the same situation, with a parent that struggling with a spouse with this awful disease, I think its really important to control the environment, its super important to for lack of a better way of saying it, support the spouse so they don't interpret things based on their feelings at the time.

Again parents become the children and its sad.

Anyways, again, I'm here if anyone is going through this situation.

[rotten42]

Reading all of this makes me thankful that my dad didn't last long after his dementia diagnosis. ####ty that's what it comes to but it was better for him, my mom and the rest of the family.


Hard to see your parent disappear before your eyes.

[GreenLantern]

I know at some point I will deal with this, alzheimers is very common in my family on both sides actually.

You've got the patience of a saint CC. Keep up the battle. I will be coming back to this resource down the road I know that for sure, so in case I don't get a chance to say it then I'll say it now, thank you for documenting all of these experiences.

[Flacker]

Originally Posted by CaptainCrunch

Snip...

Anyways, again, I'm here if anyone is going through this situation.

Captain, as someone who lost a parent to a long, long run of dementia (Early onset), you have my utmost sympathy.

It is important that you and your siblings take care of yourselves, and each other. It is an incredible strain on your family relationships, and your mental/physical well-being.

If you have the means, I would strongly recommend talking to a professional, as most people don't naturally have the toolset to deal with these challenges. I carried a lot of anger and resentment, and without help I likely would have continued to be miserable.

If you ever need someone to listen, hit me up.

[Buff]

Originally Posted by CaptainCrunch

If you are in the same situation, with a parent that struggling with a spouse with this awful disease, I think its really important to control the environment, its super important to for lack of a better way of saying it, support the spouse so they don't interpret things based on their feelings at the time.

Again parents become the children and its sad.

Anyways, again, I'm here if anyone is going through this situation.

I totally get this part. My mom understands that my dad has dementia but struggles with who he has become. He's not the same, yet he's not that terrible. She's able to care for him, but resents that and is dealing with a lot of anxiety. Being the only child, I'm dealing with a lot of pressure. I call her 6 or 7 days per week and visit at least once per week yet I get the feeling from her that I have to quit my job, disown my kids and get a divorce so I can focus 100% of my time on them.

She has a lot of ups and downs and tries to make me feel guilty about how she feels. It angers me when she does that, yet I'm now seeing a lot of what she did to my wife. We used to always leave their place (or they leave ours) and my wife would be hurt because of something my mom said to her. She would do it in private, and now she's doing the same to me. As soon as she gets someone in private she says mean things, or insinuates mean things in a very passive aggressive way.

After Christmas my kids said she was such an angry person, one of them wondering what he did to make her so mad. She never even tried to interact with them at all.

If this weren't my mom but a friend I'd just cut her out of my life. Unfortunately I have a duty to take care of her in spite of how she is behaving towards me. I also see a duty to be an example to my kids to show them how to care for my wife and I when we're old and difficult. A duty to make sure I'm senile that I don't treat my kids terribly and have understanding when they can't be there for me 24x7x365.