The war against Dementia

[CaptainCrunch]

Yeah, sometimes I use CalgaryPuck as a bit of a sounding board, I get great advice here at times, its a great community for that. Sometimes I just use it as an outlet.

Not just recently, but for a while now, I've watched my mother fight a brutal losing battle with Dementia, and seen the toll that its taken on her and my dad. Several years ago, she had a fall that caused brain damage as she had suffered from bleeding on the brain that was caught late. We thought we were in the clear as she bounced back to be the smart, funny vivacious woman with a sometimes sharp tongue that I'd grown up with. If I was ever going to describe the mother that I knew it was fire plug, opinionated, loving, kind and generous.

I still laugh when I think of going to school every year with all of the insurance forms and in the spot where they asked form my mom's age she wrote "None of your damn business".

But Dementia has taken that away, its taken her away from me and my sisters and especially my dad. She has rare moments of awareness, but now it a miracle if she knows who I am when I visit her. Its rare that when she talks that it makes sense. She wakes up in the middle of the night because my dad is a stranger.


Its taken my dad in a different way. I've always been clear here that for years, I had a bad relationship with my dad. I couldn't wait to move out when I hit 18, fleeing to the army and later to the States. Over the years we've fixed it. I always marvelled that my dad aged gracefully and even to this day at the age of 88 looked like he was much younger, was smart and funny and slightly weird. But Dementia . . . my mom's dementia has taken that away. He's old school til death do you part, I'll take care of this. But he can't as much as he wants to, as much as he tries, and god knows he's done everything he can.

Sadly we as a family decided to move them into extended care, while we can still get them in together. Dad has fought it but finally surrendered, I think he's finally realized that he just can't take care of her anymore.

Its tough even for us kids to realize it, We all, and I mean most of us, take examples from our parents, how they got us through hard times, skinned knees, broken bones, personal disasters, but now they can't do it.


I can't help but feel that my dad feels a bit betrayed, that we pressured him and are taking away his freedom and worse that he feels like a bit of a failure because we don't think he can handle this and take care of his wife.

I learned to late the depth of support out there for care givers of people with Dementia, that there are resources and professionals that can talk you through. I'm grateful to the social worker that was assigned to talk to me via my other therapy.

It really is a nice extended care home with lots of activities, really nice living spaces, and a staff that when I vetted them seems great. I'm hoping that once my dad adjusts that he can live out the rest of his life without the gut wrenching pressure that he's probably been feeling, and maybe find some joy again, or something to do besides being scared and worried all of the time.

This disease is awful, it robs a person of everything and robs a family and friends of a light in their lives. I'm not delusional enough to think that the programs that they offer for Dementia patients is going to reverse anything, or bring her back, I'm resigned to the fact that my mother will keep seeing me as the son that she lost almost 50 years ago (That's who she thinks I am) or that we'll have long interesting conversations about the books that she's read of the music that she likes.

I guess the thing I wanted to convey, for those of you with relatives that have been effected by this, or might be in the future.

There are support resources for care givers and family members.
There are programs that can help people with Dementia and the massive emotional mood swings and frustration that it causes.
Don't be afraid to ask for help from your doctor.
Don't be afraid to learn how much this can effect your mental health and get help to cope with it.

Also don't be afraid to get tested for early onset if you're worried about it.

Thanks for letting me put this here.

[afc wimbledon]

my family tends not to get dementia because we stroke out to early, its a blessing frankly, but I was on the board of an extended health facility for many years and grew to hate dementia with a passion, if we are supposed to #### cancer I will happily #### dementia with a rusty fork sideways

[troutman]

Watching my father regress from a Captain of Industry to a five year old child was heartbreaking. It took place so gradually too, which is maybe the cruelest part of the disease.

I feel like sharing some of his work - I could not be more different than him, but I was very proud of him. This is the man we remember best:
https://www.sec.gov/comments/s7-29-07/s72907-29.pdf
https://onepetro.org/JCPT/article-ab...rectedFrom=PDF
https://www.albertasecurities.com/-/...A789070DEEC2C5

We saw many sad things in the dementia ward over the years, but there were heartwarming moments too. The nurses and aides that care for these residents are saints. Some of the residents were absolute characters (with no filters) that made you smile. There really could be an honest tv drama/comedy about life in the dementia ward.

There are encouraging treatments on the way, but maybe 10 years away? Too late for my dad. My sister and I worry about our risk, and I'm not sure how much you can do to prevent it if it is written in your DNA.

[Delthefunky]

Hey captain, sorry to hear all that. My mom got diagnosed with alzheimers at 66. In hindsight she probably showed symptoms a little earlier. She's 74 this September, and she's definitely approaching late stage. We went through what you did when it came to putting her in a home, and covid complicated it as well. She's been in her home since April, and it's a much better situation for everyone, especially her. Every case is different though so I'm not sure how it's working for you.

To me the tough part is not knowing what she is still capable of thinking. Deep down something is still there, I just hope she still realizes how loved she is. I'm out of province but I try to get back every other month to visit, luckily my dad, brother and sister are there pretty much every day.

A really good YouTube resource that my sister found is this lady named Teepa Snow. She's basically an expert on all kinds of dementia, having been a caregiver for most of her career. She has lots of videos on topics like explaining different kinds of dementia, what patients are still capable of, and how to make the most out of your visits, such as how to engage with them. I'd highly recommend them if you haven't seen them yet, I learned a lot.

One thing I've learned too is how common it is, so the support group is definitely a lot of help.

[Northendzone]

My mom had Alzheimer’s and dementia. Hated watching the life drain out of her to a point where she just exsisted.

Every once and a while she would look at me with some light in here eyes like she was going to say something and then nothing.

I hope that I don’t get this.

[Inferno]

My Grandma and all of my mom's siblings except maybe one uncle who his wife thinks may have been getting it had Alzheimer's.

My mom thinks she's getting it but she's always struggled with anxiety and thinks she has some type of illness so it's hard to take her seriously or if she's just worrying too much.

[Puppet Guy]

We watched my father in law slip away through dementia for a few years, with his last year being pretty hard (the pandemic made it even more difficult). He was a guy with two PhDs, and at the end you'd never know it.

Don't wish it on anyone.

[RichieRich]

Thanks CaptainCrunch... a very tough topic and it hits real close for me too.

It's brutal what this does to the person, to their spouse, and the support family's. Its also shocking the level of denial with the spouse and within the family. Super important to recognize the path this disease takes and plan accordingly, or at least have some discussions and bit of a plan. Covid has significantly affected treatment access as well making the affected family's hesitant to "give up" the affected person at risk of not seeing them for a long time.

Choosing NOT to make any decision IS actually making a decision. As I've said repeatedly - it's better to get your resources and plans in place a little too early rather than a little too late. I am witnessing and having to live with the "too late" option and have zero say in the matter.

[CliffFletcher]

Both of my parents have been diagnosed with dementia in the last 18 months, and my dad moved to a care home. My advice to everyone with aging parents is to ensure they have power of attorney and personal directive documents prepared. These are essential when things start to deteriorate - you will need them for everything from medical decisions to dealing with banks and bills, taxes, etc. And the documents have to be prepared when they’re still sound of mind.

We had those documents in good order. An already incredibly difficult situation would have been much worse if we hadn’t. Couples typically cite the other spouse as the authorized party, but as in the case of my parents, both can lose their capacity for decision-making within a short period. Children need to be aware of and involved in these legal matters. It’s as important as a will.

[MoneyGuy]

Originally Posted by CliffFletcher

Both of my parents have been diagnosed with dementia in the last 18 months, and my dad moved to a care home. My advice to everyone with aging parents is to ensure they have power of attorney and personal directive documents prepared. These are essential when things start to deteriorate - you will need them for everything from medical decisions to dealing with banks and bills, taxes, etc. And the documents have to be prepared when they’re still sound of mind.

We had those documents in good order. An already incredibly difficult situation would have been much worse if we hadn’t. Couples typically cite the other spouse as the authorized party, but as in the case of my parents, both can lose their capacity for decision-making within a short period. Children need to be aware of and involved in these legal matters. It’s as important as a will.

Make sure those documents are done early while the aging parents have the mental capacity to provide instructions.

[CroFlames]

How does one go about getting those documents?

[Fuzz]

Originally Posted by CroFlames

How does one go about getting those documents?

You might want to talk to Troutman, he can get you those, and wills.

[calgarywinning]

Originally Posted by CroFlames

How does one go about getting those documents?

Do yourself a favour and get the documents and get it all outlined. It will make the most difficult parts of this, just slightly easier because you won't want court dates and fees at the end.

[Frequitude]

Thanks for posting, Cap. Tests are forthcoming but I think I’m headed down this path with my mom. Her mom had it. It started a couple years ago with repeated conversations. She’s still 100% with it and it’s “just” short term memory loss, but it’s accelerating at a frightening pace.

There’s something with these posts talking about their folks being “gone” that hit hard. Do you have any life/relationship advice for dealing with this before it becomes that?

[CaptainCrunch]

I wish I had some brilliant advice, but this disease causes so many turns and curves in a relationship, and it involves in this case a primary care giver that's an emotional tornado as well.



The only advice I can give, is treasure your interactions and conversations, because it seems that you lose them very fast. Like I said, my mom doesn't really know who I am, she doesn't talk anymore and when she does its not lucid. She doesn't like to hug anymore because its hugging strangers to her.



The things that the parent might love doing, my mom was a fantastic cook, she loved putting on big dinners and having lots of family over to enjoy it. The last one was a couple of years ago, she's just not capable of it, so treasure those, take pictures whatever you need to do.


With the care giver, in this case my dad. The situation changes daily. On some days he wakes up to a stranger, and scary situations and he gets exhausted and tired, and he's ready to talk about the next steps which is extended care for both. The next day he puts his footdown, they're not going, he's got it handled, its just rapidly switching because he fears that lose of control or personal freedom or he's afraid he and my mom will be forcibly separated as her condition gets worse. You have to be clear and honest. For example if something happens to him, none of us kids has the capacity to take in our mom and properly take care of her. That's just facts. If mom gets worse, that decision of where she goes or what happens gets taken out of his hands, just because this disease can create really emotional to dangerous to baffling situations.



Its tied me up in knots for a while now. I wish I had done more with her before this really took hold. I wish I had some brilliant insight or advice. The only advice besides that is take advantage of the programs out there for care givers, get advice from experts. Don't get mad or sad in front of the person with this or get frustrated with the chaos it causes.



That's all I've got.

[EVERLAST]

It's truly heartbreaking watching your parents , extended family have to go through this again and again.

In my mid 50s now I've seen so so so much of this . I'm not sure I don't hate dementia more than cancer.

Watching a loved one lose their identity, Witt, faculties is so ff####ed.

For all those enduring through this God bless ya.

On a side note.....my cousin smokes weed with their dad who was diagnosed with dementia a decade ago and they have the most incredible conversation afterwards.

My cousin plays allot of older music during their visits .....my uncle remembers about 70% of the music.

He said to me.....i get my dad back for a part of that visit. ....which broke me .....actually crying as I type this.

[octothorp]

Yeah, we have this in my family as well, and my mother's case moved fairly quickly. It's weird how it messes with your notion of grief, because it's just this constant slide of losing little parts of them that you'll never get back. I don't think I've ever grieved more in my life than when I realized I'd never hear her play piano again. There are a lot of small details like that, but that's the one that hit hardest for me so far. But it never lets you fully grieve, because fully grieving feels like it's denying that part of the person is still there. So you're kept in this half-grief state for years. I remember my parents going through the same thing with my grandmother, although it never occured to me what they must have been going through emotionally at the time.

[RichieRich]

Originally Posted by CaptainCrunch

With the care giver, in this case my dad. The situation changes daily. On some days he wakes up to a stranger, and scary situations and he gets exhausted and tired, and he's ready to talk about the next steps which is extended care for both. The next day he puts his footdown, they're not going, he's got it handled, its just rapidly switching because he fears that lose of control or personal freedom or he's afraid he and my mom will be forcibly separated as her condition gets worse. You have to be clear and honest. For example if something happens to him, none of us kids has the capacity to take in our mom and properly take care of her. That's just facts. If mom gets worse, that decision of where she goes or what happens gets taken out of his hands, just because this disease can create really emotional to dangerous to baffling situations.

That's all I've got.

This is what we are dealing with where one day the reality is brutal and the next day "we can do this!", or several days of bad. It all spills into the other family relationships, which unfortunately involve avoidance from many and a total lack of pragmatism which seems to be headed towards a "worser-case" situation where suddenly one day something significant happens, the person is removed (and/or injured), and no proactive legal steps have been taken. The affected persons adult children are frozen from emotion and lack of knowledge, yet still pray and expect some overnight miracle cure. And yet here I am unwillingly on the sidelines with no voice and literally un-invited yet it's clear as day to me as I see the multi-generational paternal oriented disfunction perpetuated. Just another thing to add to an already overloaded state of affairs.