Fuck Alzheimers

[BmillsSkier]

My heart goes out to your SIL and yes it is evil.

I'm now dedicating how many years I have left on this planet to help others dealing with dementia. It's given me a new purpose and it's humbled me like nothingness ever has.

Truly inspiring Kenny, wishing you and your wife nothing but the best.

My S-I-L passed away last night, no more than 2.5yrs since there was a hint that something was amiss. Truly horrible to the end and I wouldn't wish that fate on my worst enemies.

Rest and Ride in Peace, Philippa.

I'm so sorry for your loss Mofro.


Fuck Alzheimer's.

[Harry]

Sister-in-law, age 67, is experiencing cognitive problems. Shocking how fast it is developing. My brother has a tough road ahead of him.

Update on this^

My bro & SIL are in town visiting, she celebrated her 68th birthday yesterday. Still declining and my bro is not handling it well. Married 40+ years, no kids, and I have never witnessed any tension in their relationship until now. She does dumb shit and he snaps at her.

For the most part she is very happy. She has a smile and just blissfully coasts through life, not a care in the world. Leaves light switches on, doesn’t close doors, doesn’t lock cars.

She has become very susceptible to clickbait on the internet, and my brother had to restrict her access to financial accounts. She falls for texts telling her that her Amazon package will be sent back unless she clicks on some link.

In some ways she is very fun to be around now because she is so happy. Until she leaves the door open and the cat gets out and a squirrel gets in. (yes, that really happened the other day)

I feel bad for my brother, and this is just getting started. He has a long hard road ahead of him.


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[thedude2340]

Thought this was pretty cool: https://www.alzrun.org/

Running an ultra in every state and seeking folks to run with, fundraising optional but 100% goes to Alzheimers research. Apparently already ran across the US for the same cause.

[Kenny Satch]

Update on this^

My bro & SIL are in town visiting, she celebrated her 68th birthday yesterday. Still declining and my bro is not handling it well. Married 40+ years, no kids, and I have never witnessed any tension in their relationship until now. She does dumb shit and he snaps at her.

For the most part she is very happy. She has a smile and just blissfully coasts through life, not a care in the world. Leaves light switches on, doesn’t close doors, doesn’t lock cars.

She has become very susceptible to clickbait on the internet, and my brother had to restrict her access to financial accounts. She falls for texts telling her that her Amazon package will be sent back unless she clicks on some link.

In some ways she is very fun to be around now because she is so happy. Until she leaves the door open and the cat gets out and a squirrel gets in. (yes, that really happened the other day)

I feel bad for my brother, and this is just getting started. He has a long hard road ahead of him.


Sent from my iPhone using TGR Forums

Seeing my wife happy keeps me going.
My wife was/is a ball breaker and knew how get me going but in a good way. To this day she still has moments where she has me in stiches.
Laughter is truly a gift from God.

[Touring_Sedan]

I'm taking the family back to Atlanta next week to see the in-laws for the first time in about 4 or 5 years. The last time we were there it was obvious my FIL was in the early stages of Alzheimer's. Apparently it's gotten significantly worse in the passing years. He's no longer driving and needs supervision so he doesn't wander off. He has some occasional anger issues, but I don't think it's too gnarly yet.

I'm concerned about how my wife is going to react. I don't think there's too much that's been left unsaid or any skeletons in the closet that the family needs to address. If anything it'll be the fact that our third of the family is the only portion that doesn't live within spitting distance of dad. They've been there to see the gradual decline, and I worry because we haven't, it's gonna hit her pretty hard. I've tried to push her to do more zoom calls and the like, but I don't think she has.

I've done a bit of research to figure out how to talk to the kids about it, hopefully they won't be too messed up. I guess I'm just going to have to wing it with the wife.

[Danno]

Your wife hasn't seen her dad in 4-5 years? Oof, yeah, that's going to be tough. Sorry, man.

[Touring_Sedan]

Your wife hasn't seen her dad in 4-5 years? Oof, yeah, that's going to be tough. Sorry, man.

We had a trip scheduled a few years ago but the 'rona threw a wrench in that for a couple of years. We were supposed to see them in Cody the summer before last, but my SIL backed out of the trip at the last minute and my MIL was worried she couldn't handle travelling with my FIL alone.

They've chatted over the phone, but not in person. I don't think she's prepared for it, who could be?

[evdog]

Update on this^

Sorry to hear about this Harry. My parents are going through something similar, although with reversed roles.

My Dad started having memory issues 6 or 7 years ago. We first noticed when he started repeating the same questions during a conversation. It slowly got worse so that he'd go out to run errands and not remember what he went out to do. So my Mom would write it down for him. Eventually he'd forget to look at the note and come home empty handed, or with something else completely. At some point he was referred to a memory clinic by his doctor who did a bunch of scans and tests but ruled out dementia and Alzheimer's. Repetitive questions got worse over time, and a year or two ago he started having trouble remembering how to get to places. So my mom would have to go everywhere with him in the car. Last year he showed up a couple times at the wrong place for doctor's appointments and this got reported to the provincial health authority. They sent out a specialist to evaluate him and she diagnosed Alzheimer's and revoked his driver's license.

Those were some bad days, because Mom hasn't driven in years. Unbeknownst to us Mom was having her own health issues as she'd stopped taking an important medication some time after my last visit and it was really messing her up. My sister visited a few times and noticed things were not going well, and getting worse. Like bills were not getting paid and things were not getting done around the house. It got to the point where Mom would get up, have something to eat and then sleep most of the day, then eat some dinner and go back to sleep. Not good. Figured out the medication thing when I went home for the holidays and got her back on it. Some symptoms improved, but it seems she has suffered pretty serious cognitive decline and anxiety so she really can't handle much or problem solve anymore.

Combined with the Alzheimer's this was causing big problems because Mom couldn't grasp that Dad could not do things like he did before. Things like calling workmen to do various tasks, he'd never think to do. And if she asked him to do something in the morning he'd forget...cuz Alzheimer's. So she'd yell at him. And when he'd ask the same question over and over she'd get pissed and yell at him. While I was home he started wandering, and talking about "going home" to visit my Grandma and other relatives (most of whom are long passed.) It got to the point after I left where he'd thrown away a bunch of belongings he couldn't "take with him" and had suitcases packed and sitting in the hallway multiple times. This is common in Alzheimer's patients and my understanding it is anxiety that drives this desire to "go home." For a month or two he'd walk out the door every day or so and be gone for hours. Police had to be called a number of times to help look for him.

We eventually got some help and the case manager from the province came out and did some coaching with my Mom to try to help her understand what Dad's limitations are. That she can't expect him to do the things that he was able to do before. And that there are ways to communicate and things to not do with someone with Alzheimer's - like don't argue with them and tell them they're wrong, or ask things like "don't you remember?" Since both of these cause anxiety. These are tough things to grasp with her reduced cognitive function but with my sister and I reinforcing that, she has more or less stopped yelling at him and he hasn't had any wandering incidents or "going home" episodes for 3-4 months. My Dad has been better since spring and summer arrived and he could go work out in the garden. But we have to keep reminding Mom if you want him to do something, you have to go ask him to do it right now, and stay with him until he's gotten started.

It's unfortunate that it seems like education doesn't seem to be provided to those who care for people with Alzheimer's because providing a caring and understanding environment goes a long way to smoothing things out.

[m2711c]

wow... the amount of actual help you got from the province is amazing. i wouldn't expect that here in the upstates.

[The Reverend Floater]

I realized that I never updated this thread, even though I read it regularly since it started. I'll share something that I haven't even told many of my friends here, though I don't keep it a secret, either. I'm sorry if this triggers some peeps--not my intention. Hopefully it helps some of you as much as it helps me to get it out there. This will be long and unpleasant.

Alzheimer's is a horrendous, ruthless and exhausting disease, as are a myriad others that often happen in our latter years. It takes the most brilliant and capable people and ever so slowly, takes everything from them and their families. But what is more awful and ruthless are the draconian laws we have in this country that absolutely rob people of having any sort of control of the most ordinary thing they'll ever do--die. We legally force people to suffer until they literally die from that suffering.

My mom spent a large part of her life as a therapist for people with MS. She was a brilliant daughter of an Army engineer and she had her PhD by 23 in a time when women didn't often get PhDs at all. She got really good at that job, eventually travelling to lecture at med schools etc., but the nature of it was tough at the time, as there was no real treatment, just management of symptoms. She'd watch her patients deteriorating right in front of her, week after week. I think it was very difficult. Later, both her parents would both suffer from dementia and she watched as they also deteriorated until they no longer recognized her. Despite so many hours of her life spent in this sort of slow dark trudge, my mom always somehow expressed sincere gratitude for life and her experiences. Even with these dynamics and also the abuse that my dad doled out ever so consistently until she left him, I never, ever saw my mom scared. But I do think the thought of being completely helpless and dependent scared her intensely.

So regardless of her cheerful nature and constant appreciation of time, she always, always maintained that she did not want to go out like that. My sister and I used to joke about it because she would periodically remind us that she was not going to die in a nursing home. In her latter years, she became more obsessed with it, planning her smallish estate and making sure we knew her wishes, even though she was largely quite healthy.

About five years ago she seemed to migrate from old person forgetfulness to more--albeit occasionally--alarming behavior. As mentioned in the thread above, things like repeating questions, losing focus on what she was doing, double paying bills, booking multiple airline tickets etc. For a few years she hung in there and was largely ok, save the occasional incident. Then one day she called me and my sister, saying her car had been stolen. As you can imagine, it had not been stolen...she simply forgot where she parked it.

During this time she was living with me and my family for around three to six months a year, then returing home to Florida where she was neighbors with her sister. The space between incidents slowly decreased and at some point it became clear to her what we had known for a while--that she dementia. On top of this, her body was slowly failing her as is often the case in later years. This was becoming her nightmare.

In September of 22, while living with me and my family, I found her one morning very disoriented and she looked bad--distant, off color and very confused. She was shaking. My wife and I rushed her to the ER. She had taken a bunch of pain meds at once . Maybe intentionally, maybe not. I believe she had tried to execute her plan. She told the doc and social worker it was an accident and she had a lot of chronic pain and had plenty of medication. We spent three days in the hospital before I had to sign for her continuing treatment.

She was also a minor league alcoholic, which was not the case for most of her life. She always enjoyed a few drinks but I don't ever remember seeing her drunk except for weddings and the like. Despite my pleading, she'd sneak bottles of wine into her room. My wife would find garbage bags full of bottles every now and then that she had "hidden" in the trunk. After the ER, we locked up our alcohol and I monitored her and her meds like a hawk--it helped that I had doctor's orders and failure would mean a mental hospital for further evaluation. After a week, she was more clear than I'd seen her in months. She had energy and was consistent. Her memory improved and her anxiety decreased. Alcohol is a motherfucker. But she also hurt badly and I knew it was just a nice but brief reprieve.

Her dementia continued to worsen that year. She ate apples like crackers which apparently is a symptom of Alzheimer's, yet she also joked about it, knowing exactly what was going on. She would certainly have good days and she created fantastic memories with my two daughters. That's the silver lining--and a beautiful one--my daughters are too young to really know what was going on and my mom absolutely loved every minute of playing with them, watching horse videos on her phone over and over and over with my youngest and reading books and chatting with my older daughter. They knew she was sometimes too tired to play and that she often slept really late but kids don't care. They live in the now. And so did my mom, ironically. But she always reminded everyone how lucky she was and how much she loved them.

During this time my mom made it very clear to my sister and I that she was ready, in case the ER trip didn't already show her hand. She actually forgot about that which is remarkable and twisted. She had that chronic pain in a long replaced ankle, her neck often hurt, and she was just tired. Because of her memory, she would often tell us repeatedly that she was ready and she would obsess about her bank account, her pension, etc etc., really worried that she would be leaving a mess. By then I was largely managing her limited finances but she was always concerned. She told my sisters' kids (much older) that she was ready to die and that was ok...she was always open about how much gratitude she had for life and it was simply time. She had a plan and began researching it with my sister's help. I absolutely supported her intention as it had always been the plan, but the ER trip had taken a serious toll on me. The whole experience and the several months leading up to it was indescribably stressful and it had taken a toll on me, my marriage and my work. I was pretty fucked up after seeing her like that and then treating her intensively afterwards. But I always understood the why. It was just hard to watch it unfold the way it did. Ironically, her heart was beginning to have problems and her oxygen levels started to decrease. Just not fast enough.

My mom ultimately did chose to leave on her own terms. In October of 23, she traveled to Switzerland and after meeting with several doctors who had read her extensive medical history and also interviewed her GP, she was granted the opportunity to leave peacefully by her own hand...in this case, a single pill of the correct dose at a very nice facility with nice people who risked their careers and reputations to grant strangers a choice while saving their dignity. She was very much at ease and throughout the final week, never waivered in her intention in the slightest, not for even a moment. She was as thankful and happy as ever, and enjoyed every meal with a sort of relief and lightness that had been absent for a long time.

When my sister called to tell me that she had gone through with her plan, I felt relief. Not just the surprising selfish relief of getting off the rollercoaster, but a calm, slow release that came from knowing my mom had done what she always intended and in so doing found peace.

I'm grateful for the Swiss and their progressive (if not obvious) embrace of end of life choice--it allowed my mom to leave this world that she loved and appreciated, on her own time and before she lost that gratitude and appreciation. Until we find a cure for these diseases of our consciousness, it seems as though an elderly woman shouldn't have to travel around the globe to simply exit stage right a few lines early without legal consequencesnor fear thereof.

I feel for all of you in this thread. It was hard to read during the shit but also reassuring to know I wasn't alone, so thank you. And if you're ever inclined, speak up about our healthcare legislation and the lack of liberty we now see both in the beginning and the very end. One of these days it'll be our turn. One love, mags, and I'm rooting for all of you in this same sort of boat.

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[zion zig zag]

Rev, thanks for that, you gave so much to unpack and learn from there. Much love and thoughts to you.

[Meadow Skipper]

Wow, TRF, what a story! As sad as the ending was, it was great of you to share. Thx.

And fuck Alzheimer’s.

[frorider]

Thanks Rev for sharing this. Human dignity is the objective, but as a society we struggle on how to provide that.

My stepmother is always making sure my incapacitated father is well groomed and dressed nicely. I see a straight line between the things we do to preserve as much dignity as we can for our elderly family members, and giving them a path like the one your mom chose as an option.

[skiJ]

Thank you, Rev.


watched each of my parent's dementias -

Determined to experience a different end.


peace, skiJ

[Kenny Satch]

Good news update.

Turns out Maria does not have Alzheimer's although she tested positive for all the markers. To this date she has no plaque whatsoever. When we 1st told it was a 6 to 8 year death sentence due to her age. The young the more aggressive it is.

Turns out she Frontal Cordial Atrophy. Still Dementia but that weight of watching her die slowing is gone.

Thanks to Dr. Mary Newport's protocol she has been responding and I also have a nutralpath that is now healing the damage. We realized it all started 2 years after her fillings we've changed. It took an MRI technician to ask if she worked with heavy metals. I said no but he told me you better look into it. when another naturopath ask the question about fillings removed it was like a light goes.

Now with the guy that started her on natural meds is now working on detoxing her brain and it seems to be working. She's remember more. Joking she hasn't in 4 plus years.

Even if she does improve further I'm happy with her current state. After 14 months of no intimacy she is now more affectionate and we final made love. She stays in the moment because in the past she alway said "no I don't feel comfortable" so never ever have I pushed her to do something she isn't ready for.

I'm on cloud nine right but I'm aware it could all go south at any given time. I'll take what I can get because I'm happier now because she's showing her old self.

BTW if anyone wants to do a video chat with Victor the Naturopath DM me. He's on another level and if not for him I would be lost.??

Correction.
Saw her doctor who the top cognitive doctor in Canada and SHE STill HAS HAVE ALZHEIMER'S....FUCK they thought it might not be so but she does.

Last visit Oct. 1st of 2023 they said was he frontal cortext issues but now they believe she has both or more. Imagine that?
WoW
They think she has a rare form call Granulin. The unknown is frustrating.

Yup 3 different things going Yet Maria has show some remarkable improvements. They say she's Anomaly. Maria is able to do things she which is suppose to be impossible but also she has never regained any attonomy yet she is recognizing things like the remote (she hasn't picked it up in 3 yesrs) She can't get one MOKA test answers right but she is remembering a lot of short term events and things that happened months ago.

Truth be told my approach is actually working deparasiting her and wow what a difference. There is a black flying fish medicine that makes go through 3 nights of hell BUT on the 4th day she is completing full sentences as was once able to thank me for all I'm doing for her. That's huge. It was like I won the lottery.

I.O.N. I nearly died 4 months ago. I was given a second d chance and rather than curl into ball I let go of all fear, anger and depression. Finally at peace with her conditions that now I'm final going to start to help other family member and family caregivers with all i learned the hard way.

Second chances are good but this never ending battle will nolonger destroy me because what will be will be. I'll cross that bridge when I have do. Going to travel with again and make the most the time I have. I wasted 3 years and no more.

[gravitylover]

Sorry Kenny. Watching my FIL finally pass a few days ago after about 10 years of declining mental health ending with severe, debilitating dementia SUCKED. I can't imagine being our age rather than the almost 90 when it set in for him.

[Shredhead]

Vibes guys!

My FIL is 94 and a former dishwasher at the Red Onion in Aspen in 1954.
Cover of Life Magazine twice, because he was a rad dude.

He has the happy Alzheimer's and doesn't remember anything after 2000. He lives with my SIL and her husband, who don't have any kids, but tons of animals.
Perfect place for him, but all consuming for them. Looking for alternatives now.

Respect for caregivers!

[Kenny Satch]

<p>
To all that have shared their experiences. I thank you. So many times i wanted to respond to posts but would try but end up losing it. You have my utmost respect. January 8th Maria had a massive seizure that lasted about 7 minutes. I know this from the camera I use to alert me when she gets up. At first I heard the loudest scream ever only to find her locked in struggle to breathe. I gave her CPR then called 911. The Angel at 911 walked me through what I suppose to do really helped. I didn&#39;t know C.P.R. does not help. Luckily she did not bite her tongue off. Suffice to say I thought she was dying. Had seen people have seizures but not like this. What a life lesson. Anyways it changed her for the worse. She was falling all the time and she lacked the ability to stand up. I had rigged a mattress on floor with pillows for when she would fall out of bed. Heartbreaking to say the least. She could not climb stairs and that hour a day on the treatmill was nolonger possible. I finally had to give in and place in LTC facility. It wasn&#39;t easy due to how much I Love her. Not waking up to her or placing her bed is real kick the gut. Finally I starting to let go knowing she,s getting g better care than i could give now. I had full stop retired to be her caregiver and thought I could handle her but I wa wrong. I&#39;m proud of the time a spent helping her and trying everything possible to improve her quality of life. Now i nedd to recharge and heal my body and mind. Being on high alert in you 60s isn&#39;t easy. I&#39;m still going to dedicate my life to help others going through the nightmare that Dementia and Alzheimers is. God bless any an all that are taking care or helping family and or friends. There is honour in taking care of those that can&#39;t help themselves. This thread really helped me so thank you again.</p>

[Kenny Satch]

Tried again but dunno whay I'm getting all these text errors

[Harry]

Very sorry to hear that Kenny. Huge respect and huge vibes.

[Kenny Satch]

<p>
Thank you Harry</p>

[mcski]

Huge respect and vibes. Being a basic caregiver is hard af and you did much more than that. Recharging isn’t easy either and will take some time but you did the right thing for both of you. Best of luck. I can’t imagine the suckage you are going through.

[Danno]

Tried again but dunno whay I'm getting all these text errors

The text errors are because this site is fucked, it's not you.

Vibes. I hope you find peace.

[Kenny Satch]

<p>

Huge respect and vibes. Being a basic caregiver is hard af and you did much more than that. Recharging isn&rsquo;t easy either and will take some time but you did the right thing for both of you. Best of luck. I can&rsquo;t imagine the suckage you are going through.

</p>
<p>
&nbsp;</p>
<p>
Finding that out the hard way but thank you for reminding it will take time. Actually I finally getting some sleep.&nbsp;</p>
<p>
&nbsp;</p>
<p>
Dunno thanks.</p>
<p>
It was driving me up the wall</p>

[Toadman]

My father passed away this week. He was 82 and had shown the first signs of dementia at the age of 77. His memory slowly regressing as the months went by. When I last visited him in Denver back in January he was asking about his parents and his two brothers, all deceased. Tough having that conversation and telling a parent that your family died. And having that conversation pretty much every day. That's essentially the daily life of someone with advanced stage Alzheimer's. Not remembering from one minute to the next. Essentially just living in the moment but also confabulating things and even hallucinating and seeing people or thinking you are somewhere else as the mind wanders to different places and times.He was still getting around okay when I left to head back home at the end of January. He had moments of lucidity but also had moments of rage that come with not being able to process things. We grew up in AK and my dad lived there for 42 years of his life. He often asked about Anchorage and our home there. But we needed to get him closer to family and the move to Denver was hard on him. He kept asking to go home. Although, sometimes home meant back to S. Milwaukie, WI where he grew up. He was prone to wondering around but never left the street and stayed close to the house. His wife always put an Apple airtag in his pant pocket when she dressed him in the morning. All us siblings (5 of us) would visit for a week when we could get out there. But each time his memory regressed until he no longer recognized us. That's what you hear everyone talk about with Alzheimer's and dementia; you lose that person you knew. Then you lose them again when the pass.Three days after I left, he took a fall when he had wondered outside looking for his wife of 20 years, who was shoveling the sidewalk. He broke his ankle in 3 places and suffered a concussion as well. That concussion is in part what caused him to slowly fade away. The doctors were able to stabilize things but he developed a blood infection that made things difficult for bed sores that also became infected. They were able get the infection under control with a cocktail of anti-biotics and God only knows what else they used.His wife just wanted to get him home. After 6 weeks in the hospital, she was able to do just that. She was able to find an at home hospice care that is affiliated with the Catholic church in Denver. She is a devout Catholic and was praying for a miracle. When I was last out in Denver to visit him in the hospital 3 weeks ago, I saw a man that was clearly suffering and with little prospects to improve, which his attending doctor told me with his advanced age and condition that he would not improve. I don't need to say more on that subject and those who have gone through this already know what I am talking about. I left the hospital knowing that it was the last time I would see him alive, but he really wasn't alive, just hanging on. It is an insidious and horrible disease and for the primary caretaker, extremely difficult and exhausting experience. He was lucky to connect with a former friend who was actually more like an aunt to us kids when we were younger. Her husband was a hunting buddy of my dad's, and we did sleep overs at their house as kids. Her husband died of colon cancer and now she is dealing with another husband dying. She is a saint, and I am glad they found each other.I will choose to remember him in better times. Fishing on the Kenai or trolling for Halibut in Seward. Though he often complained about it, he would drive us kids to the slopes at Alyeska and paid for ski lessons when we were just getting into the sport. In large part I am a skier today because of his time devoted to us kids although he never skied himself. He knew that it was something that we all enjoyed doing and am thankful for that gift that I share today whenever I have the chance to ski with my brothers. I only hope that with time that scientists can crack the code to this disease and find a cure.