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Alzheimer's is a fucking terrible disease

I was talking to my mom by phone earlier today (she's in her late 60s; diagnosed around 62). And our conversation went a little like this:

Me: Mom, I'm lonely

Mom: Well, you have friends

Me: Yes, but I only have one mom

Mom: What happened to your mother?

Me: Mom ... you're my mother

Mom: Oh, I didn't know that. [a pause] So did your mom die?

Me: In a sense

Mom: Was she a good mother?

Me: [crying] She was the best

---

I always knew it would be hard. But I never knew it would be THIS hard.

by Anonymousreply 7005/06/2021

It must be awful, OP. Just know your kindness communicates to her anyway. Our brains can wear out just like our joiints.

by Anonymousreply 105/03/2021

I'm dealing with a 90-year old mother with dementia, so I feel you, brother.

by Anonymousreply 205/03/2021

Thanks r1

by Anonymousreply 305/03/2021

Creative Writing assignment?

by Anonymousreply 405/03/2021

Not in the mood, r4

by Anonymousreply 505/03/2021

Oh, Lord. Did I ever need to see this. My dad, my big strong former football coach dad, has now been in a skilled nursing center for two weeks. Before he went in? He was sharp as a tack. Reading books all day and lovin him some Joe Biden. I called his room yesterday and the nurse answered. I told her I was his daughter and that I would like to speak with him. She said to him" your daughter is on the phone." He replied "I don't have a daughter. What should I say to her?" This shit is devasting. So what do we do? As long as he isn't in any pain? I guess I will have to alright with him not remembering who I am. But oh how I will remember him...

by Anonymousreply 605/03/2021

One of my oldest friends has been diagnosed with dementia. He's currently in a physical rehab nursing home after kyphoplasty surgery (compression fractures of 2 vertebrae). He has days when he seems perfectly normal. And then all of a sudden he completely loses his mind. Just last week he told his wife out of the blue, "I don't live here, this isn't my house, I need to go to where I live". She finally got him calmed down and he went to sleep for a few hours. When he woke up all was okay again. I told her on the phone yesterday that if you aren't crazy, dealing with a close family member with dementia will drive you crazy and she agreed completely.

by Anonymousreply 705/03/2021

I neglected to say that I'm sorry for what you're going through OP. I know it must be especially hard to have your mother in this condition. My mother died relatively young, but I don't think I could have handled it if she had lost her mental capacity at any point. But keep strong, for her. You'll get through it.

by Anonymousreply 805/03/2021

My father, age 99 (!) is convinced that I am -

a) his father b) his brother c) one of the PSW's in the nursing home e) his doctor making a house call

It just depends on the day.

by Anonymousreply 905/03/2021

There is no personal sorrow so overwhelming that it cannot seem trivial and mawkishly served when dropped into a DL thread.

Hint hint.

Maintain your dignity by not presenting your personal issues to strangers. It's creepy.

by Anonymousreply 1005/03/2021

Been there/ done that with all of the above. When my mother would tell me that she wanted to go home( my parents built the house 18 years before) I would take her to the car, drive around the block ( telling her " almost home!") And then pull back in the driveway with alot of fanfare about " here we are!" Worked about 7 or so times. Luckily her final descent from ditzy Aunt Clara/ Bewitched phase to not knowing who I am to final detachment and passing was only about 3 months. The Aunt Clara phase was about 9 months. It is so completely horrible. Whenever I hear an elderly person died quickly I feel how lucky they were.

by Anonymousreply 1105/03/2021

The mother of my partner had dementia. She was in a home for the eld erly. Last year, with all the confinement, he wasn't allowed to visit her anymore. She got some kind of infection, was put on morphine and passed away peacefully. I know it's horrible to say but I has really relieved for my partner. The suffering is beyond words. I feel your pain. Maybe there are some good days. Playing music sometimes worked with triggering memories. You also need a support group. Hugs

by Anonymousreply 1205/03/2021

I’ve posted on here about my mom before. She’s 83 and has had several TIAs the last couple of years. It has affected her short-term memory. I see her and my dad every weekend. This past weekend she wasn’t sure what I did for a living. (I’m a teacher. I’ve taught over 20 years. ) It bothers her that she can’t remember and now asks my dad routinely the answers to recent events.

I understand your pain, OP. I don’t want her to get worse, but I know it will only worsen with time. Dementia seems to be genetic on her side of my family. Yet, my dad and his siblings are all over 80 and fine. I’m trying to prepare myself for their deaths because at their ages (dad is 88) something could happen any day. I tell myself how lucky I am to still have them and how thankful I am that they’re as healthy as they are.

by Anonymousreply 1305/03/2021

Thanks, everyone (except the trolls). It feels surreal in a sense. I tend to have good intuition, and I fear the end, when it comes, will come swiftly. And I'm afraid it may come soon. She's been declining pretty quickly the past several months.

by Anonymousreply 1405/03/2021

I'm so sorry, OP. Hugs. Big hugs to you and your mama.

by Anonymousreply 1505/03/2021

Sorry to all of you dealing with these situations. I had someone in a skilled nursing facility. Horrible memories.

by Anonymousreply 1605/03/2021

What do you think is the underlying cause of your mother's early onset of dementia, OP? 62 is too young to lose one's memory though.

by Anonymousreply 1705/03/2021

No, they usually don't remember the fucking.

by Anonymousreply 1805/03/2021

Sometimes alzheimer’s can show on younger people too. My childhood friend’s mother was diagnosed at 54.

by Anonymousreply 1905/03/2021

Genetics, r17? Iirc, genetics tend to play a larger role in early-onset Alzheimer's. Her mother died of Alzheimer's, although later in life (age 86).

by Anonymousreply 2005/03/2021

Sorry Op, this is heartbreaking very hard.

Are you speaking to her in person, or over the phone, facetime?

by Anonymousreply 2105/03/2021

I look after my 92 year old dad at home. He has dementia. Most days are pretty good, except some days when I dress him in the mornings he'll say things like "It was good to see your mum yesterday". My mum, his wife died 20 years ago. Yet he's often convinced that she's alive still and living on a farm nearby. I usually brush it off by saying that we should get breakfast now and he forgets what he's said. Some days he persists about going to visit her, then I have to have that conversation, that she's no longer with us and hasn't been for some time, which is tough to have.

He loves Rowan Atkinson, so we usually watch a Mr Bean or a Johnny English film each day. I know the lines to every film off by heart now.

The first five years were the hardest to look after him, now 11 years later, it's easier as we enter his final years and a care home beckons.

by Anonymousreply 2205/03/2021

I can't even imagine it. Alzheimer's seems like slow brain death. I have cancer in my family, no history of Alzheimer's thank god.

by Anonymousreply 2305/03/2021

I feel you and send strength and love, OP. I am caring for both parents and though confusion and forgetfulness are issues for both, neither has Alzheimer’s. My good friend is caring for his parents though, and one of them is devolving. I can’t even imagine dealing with that on top of this already. Fuck.

by Anonymousreply 2405/03/2021

I’m sorry OP. I can’t begin to imagine how difficult this is for you. Stay strong.

by Anonymousreply 2505/03/2021

r21 usually over the phone. She actually does better in terms of her conversation level on the phone than on Zoom -- no idea why. On Zoom, she just kind of looks at the screen and isn't sure what to do.

by Anonymousreply 2605/03/2021

My 95 year old mother started showing signs of dementia 2 years ago. But Things really went downhill in January of this year. I’ve been at her house for the past 2 weeks arranging in-home care, preparing court filings to become her guardian and conservator, transferring all of her bills to my address, transferring banks accounts to my control, etc. My mother was a bank president, and can no longer remember to pay bills. She has three topics that she repeats over and over: The weather, what’s for lunch, and her mother. At 95, all of her friends and family are dead, except for me.

by Anonymousreply 2705/03/2021

So sorry, OP. That really sucks. Hang in.

by Anonymousreply 2805/03/2021

Sending my love to you all, wishing you the strength to get through. You’re doing a good thing.

by Anonymousreply 2905/03/2021

r27 I can relate to the repeating of topics. My mom tends to get preoccupied with things. For example, she found a postcard a couple of weeks ago, and every time I talked to her, if she had the postcard with her, she'd tell me, "I have this ... (she couldn't always express what) ... I want to show you." Then as soon as she loses said item, she never mentions it again.

by Anonymousreply 3005/03/2021

r30 = OP

by Anonymousreply 3105/03/2021

My husband's mom has dementia, and half the family are furious she isn't in a home already. The other half (including my husband) refuse to even consider it. They are lucky - that side of the family (there are 8 kids altogether) have money and big homes to accommodate her needs. If they didn't have those resources, she'd definitely be nursing home material.

Seeing all of this vicious infighting is exhausting, however. The issue has torn that whole family apart. And shown how rotten people can be.

On a side note, my husband's mom was an old school, icy Irish Catholic woman. Not warm at all. She used to intimidate me actually. Ha. But ever since her dementia, she's become super-chatty and bright with personality. Child-like almost. I hate saying this but she is now absolutely delightful to spend time with.

by Anonymousreply 3205/03/2021

My grandmother had dementia and lived with us when I was in my teens. I didn't know better so I'd argue with her. I wish I had known how to treat her better.

by Anonymousreply 3305/03/2021

R33, don’t feel too bad. Teenagers are temporarily insane and terribly selfish. Maybe she liked the arguing. Many people do!

by Anonymousreply 3405/03/2021

I'm sorry for all your pain. It sounds, at least, like your loved ones are pretty content even though they may be mentally compromised and I hope you can take some comfort in that. (My father is still pretty with-it, but miserable.. mostly due to his own issues but it's a bit sad.)

by Anonymousreply 3505/03/2021

OP, I completely am in the same boat and I feel your pain. My parents live about 30 minutes away from me, I used to talk to my mom every few nights on the phone. She's 78 and in reasonably good health. Over the last few years, and particularly the last year because of Covid, she's withdrawn from the world. She no longer chairs any of the clubs and activities she took pride in. She refuses to acknowledge she has any memory issues and fights with anyone who dares to bring it up. We don't have a specific diagnosis, but her father passed away from Alzheimer's. She knows there is medication that can halt the progression. She utterly refuses to admit that anything is wrong. I say something and she won't remember 5 minutes later.

She no longer reads much because she doesn't remember what happened, same with tv. You can't hold more than a perfunctory conversation with her about the weather or her grandkids who live next door. She's a stubborn and unhappy mule of a person who I now see with the sweet mask off. I just am very blunt with her when I see her. Come back and sit in the same room with me, I came to see you. Don't be mean to Dad. "WHY, what did he tell you?" "Nothing, I just know you." On the flip side, I have been able to connect more with my Dad who I never had a great relationship with.

If you are so terrified of the disease, allow others to help, or at least listen. We're not lying to make you look bad. It's sad to see her like this, and I would prefer to remember who I thought she was. I only hope for my father's sake that she doesn't live years like this. He deserves some peace too. It must be gut-wrenching for him. He's lost his partner, but she's right there.

by Anonymousreply 3605/03/2021

R36, the meds aren’t really all that effective. We’re talking months, which is better than nothing, but not great.

by Anonymousreply 3705/03/2021

R6, don’t assume that’s Alzheimer’s. My dad was also in a nursing home. Suddenly he started being very forgetful. The staff just assumed he had dementia although he was very sharp before he went there. It turned out they changed his medication and the new medication interacted with an old one. This made him extremely forgetful and he couldn’t hold a thought for more than a few minutes. He was very frustrated and disoriented by this. Nursing home staffs tend to think everything that happens is Alzheimer’s, but it isn’t.

Get a list of every single medication he has and go on Webmd or somewhere and look up every single side effect. Read all the way to the bottom, the more serious side effects can be at the bottom. Look for cross side effects between two meds also. The whole time my dad was there, they never even checked.

I’d also talk to his doctor and make sure they understand he did not have dementia before this. Nobody gets dementia in two weeks. But drug affects tend to build up in the system, so if it’s a drug side affect he will rapidly decline even further. But taking him off it will stop it.

by Anonymousreply 3805/03/2021

people take advantage of elderly people, people with dementia especially. Be very careful.

by Anonymousreply 3905/03/2021

It is hard on the adult children. There is a lot of incorrect advice and predators. What kind of scumbag picks on a family, when they are having these serious life and death issues?

by Anonymousreply 4005/03/2021

My mom died in her late 80s.

She had maybe a year or less of heavy forgetfulness

Where's my sister?

Is my mother dead?

She started to say something once and I said if you're going to ask about someone assume they might be dead.

She laughed. Like really laughed. She got it.

But it was still tough.

the end wasn't all that bad; a week in hospice; pneumonia, covid...heart...

I hope she's with my dad now; they really loved each other.

by Anonymousreply 4105/03/2021

Just for the record, it is not easy taking care of a parent with dementia. People who bad mouth the family member who are, are pure scum.

People who try to drive adult children (siblings) apart are sociopaths. This is their MO. Don't they have enough on there plate already? It is better that the adult children of the parent stay together, and cut out everyone else.

People prey on the elderly and their adult children may also be the victim.

by Anonymousreply 4205/03/2021

OP any ideas from her docs why she has it this bad so young? She's not even retirement age! My grandmother is getting it but she's 95. My step mother is getting it but she suffered brain injury 20 years ago from a car accident that left her paralyzed for 4 years. 60-62 is YOUNG (at least by DL years!)

sorry you are going thru this. Keep your good memories close - you will need them to make it through. And a few strong gin martinis.

by Anonymousreply 4305/03/2021

We just went through this. I hope the curse will not be passed down to me. It runs in the family. May she now Rest In Peace.

by Anonymousreply 4405/03/2021

R22, you don't have to tell your dad that your mom isn't alive. Just let him believe it. What harm does that do?

by Anonymousreply 4505/03/2021

Oh OP, I'm so sorry.

Sending you virtual hugs.

by Anonymousreply 4605/03/2021

I wish there were evidence based, credible resources for people. There is a lot of BS out there.

by Anonymousreply 4705/03/2021

I know Alzheimer’s is tough, but that doesn’t make it right to play games with those who suffer. I swear most complaints from the family members of Alzheimer patients are brought on themselves. Is there some sick satisfaction to be had from repeatedly dicking around with patients? Is it really that fucking important that mom remembers every fucking detail of your life or is it just an ego trip? Do you really have to correct every utterance, every detail of every conversation every moment of the day? Or is it just a chance to finally be “right” for once and mom or dad wrong? I see family members spending their visits power tripping the vulnerable then going to sob about how unfair it all is on Facebook for some extra sympathy points to boot.

by Anonymousreply 4805/03/2021

Is there a fantastic, wonderful disease, OP?

by Anonymousreply 4905/03/2021

OP, I am so sorry. It is so heartbreaking. It is very hard. People have no idea. Do not listen to the clueless or the cuntful.

by Anonymousreply 5005/03/2021

[quote]My dad, my big strong former football coach dad, has now been in a skilled nursing center for two weeks. Before he went in? He was sharp as a tack... She said to him" your daughter is on the phone." He replied "I don't have a daughter."

Am I reading this right? In just two weeks your dad went from fully mentally functioning to not knowing you're his daughter?

by Anonymousreply 5105/03/2021

There are some mean, petty, nasty cunts on DL, but over the years I've noticed most of us are pretty good children.

Big hugs OP xx

by Anonymousreply 5205/03/2021

My dad had to move into a senior citizen’s home the last year and a half of his life. He couldn’t live alone anymore. It was sort of gradual until his mental and physical state started to rapidly decline. I am the youngest, one brother and mother have already died, and another brother is a doofus and lives on the other coast. It all fell to me to take care of everything. Almost daily calls from the nurses and doctors, and his elderly sisters whenever there something they didn’t think was being done correctly. Lots of mixed emotions. My father and I loved each other, but it was frustrating how he showed little interest in my life beyond my car and my job, but was always involved in the straight family members’ lives.

He appeared to know me almost up to the end, but sometimes I think he pretended he knew me because he sensed he was SUPPOSED to know me. He was mostly non verbal the last few months. Even though he was 88, it was hard seeing my strong, outdoorsy dad decline. I also feel guilty because of the sense of RELIEF I felt when he was gone. It was a horrible time.

My mother died suddenly and that was hard, too. I don’t know if one way is better than the other when it comes to losing a parent. Hugs, OP.

by Anonymousreply 5305/03/2021

My grandmother's dementia started in her late 79s, she lived to be 90, my mother's came on in late 70s, too, and she lived to be 86. It's a long slow, terrible struggle and a relief when they finally die. Now that they're gone the I focus on the good times and when I dream of my mother she's younger and healthy again. I love those dreams.

Early onset, like your mother's OP, does tend to progress more quickly. Your mother is still relatively young, I'm sorry you're going through this already.

R32, my mother could be tense, critical, and negative before dementia, but she also had a delightful side when she could relax. As the dementia progressed the edge softened and she too became more loving and positive. I would take her for long drives through our old neighborhoods and she would just exclaim with delight as she recognized old haunts and long forgotten memories would return. Towards the end I could no longer take her out, she could hardly form words, she forgot how to speak, words would just not come.

by Anonymousreply 5405/03/2021

[quote][R6], don’t assume that’s Alzheimer’s. My dad was also in a nursing home. Suddenly he started being very forgetful. The staff just assumed he had dementia although he was very sharp before he went there. It turned out they changed his medication and the new medication interacted with an old one. This made him extremely forgetful and he couldn’t hold a thought for more than a few minutes. He was very frustrated and disoriented by this. Nursing home staffs tend to think everything that happens is Alzheimer’s, but it isn’t.

[quote]Get a list of every single medication he has and go on Webmd or somewhere and look up every single side effect. Read all the way to the bottom, the more serious side effects can be at the bottom. Look for cross side effects between two meds also. The whole time my dad was there, they never even checked.

[quote]I’d also talk to his doctor and make sure they understand he did not have dementia before this. Nobody gets dementia in two weeks. But drug affects tend to build up in the system, so if it’s a drug side affect he will rapidly decline even further. But taking him off it will stop it.

My father was in a very similar situation, r38. Nearly lost him at 75 years of age. Medical contraindications caused mental confusion and awful physical reactions that mimicked c diff. Eliminating some meds and adding probiotics brought him back. He turned 90 this year. Tends his garden. BBQs. Tells his grandkids stories.

I won't have him for much longer - but I've had him for 15 more years than I'd hoped for. He has senior moments, sure, but he's still my Dad.

by Anonymousreply 5505/03/2021

These stories are heartbreaking. I don't know what to say except to wish you all strength as you deal with dear ones slipping away.

by Anonymousreply 5605/04/2021

I didn't try to "trip her up," r48. Please keep your assumptions to yourself. In fact, one of the ironies of the conversation was that just before the exchange, I'd thought to myself, "Wow, she's pretty lucid today." She'd remembered something I'd said in an earlier conversation, which rarely happens.

by Anonymousreply 5705/04/2021

r43 again, I've read a lot and may be misremembering, but I think early-onset Alzheimer's tends to progress faster. As to the Why? of the diagnosis itself? Don't know. Genetics, perhaps?

Not that this is exclusive to early-onset Alzheimer's, but I know of a few cases in which the person was relatively fine, still verbal and mobile, and then dead weeks or months later. I'm bracing myself for that: when the end comes, it might come fast.

by Anonymousreply 5805/04/2021

Agree with R48. My best friend's mother had Alzheimer and was in a nursing home. Whenever I'd visit there, she'd quiz her mother on who I was, asking her more and more questions to try to jog her memory. The look of confusion and distress on her mother's face as she struggled in vain to place me was heartbreaking. I finally told her to stop asking, that it was enough that her mom knew someone had come to visit her. I kind of think my friend was hoping her mom could remember and that the disease progression wasn't that bad yet. I took to visiting on my own and we'd have delightful little visits.

Such a horrible disease. It kills you over and over.

by Anonymousreply 5905/04/2021

How awful for you OP, I really feel for you although I can't begin to understand what that's like. I remember reading something about this before which said that although she might not know who you are, you know who she is and on some level she will feel that love. Love her through this pain.

by Anonymousreply 6005/04/2021

Although she doesn't understand the nature of our relationship, she still knows it is an important one, r60, which I take comfort in.

I know it's semantics, but it's also surreal to have that conversation with your mother. And one of the hardest things to accept is that ... I no longer have a mother. But I can't really put my finger on when, exactly, I lost her, because it happened so very, very slowly.

by Anonymousreply 6105/04/2021

My dad and several of his siblings died of dementia. It is a truly horrible disease. I wish all of you who are dealing with loved ones battling dementia the very best. Ask for help. It's so hard trying to handle it all by yourself.

by Anonymousreply 6205/04/2021

One challenge I've found -- and I think this is much more a challenge for my dad -- is that you're used to a person behaving a certain way their entire lives, you say X and they response Y, we fall into these patterns, and then suddenly, they look the same, but are a different person. It's a difficult circle to square. In addition, they become childlike, and I think there is an impulse to treat them like a child in the sense of giving them information and hoping they'll grasp it and apply it -- even in the most basic of manners. It goes against what we're used to, watching a person regress, little by little, and dealing with it appropriately can be a challenge.

by Anonymousreply 6305/04/2021

^^^ they respond

by Anonymousreply 6405/04/2021

After my mother died it became clear that my father’s mental state was much worse than we realized. She’d done everything for him for so long that it had masked his decline. It was a shock. I’m so sorry, OP. Hugs.

by Anonymousreply 6505/04/2021

Thanks, r65, and for all the thoughtful replies on this thread.

It's an awful day. I'm going to go outside and cry and cry and cry (MARY!!!!!!) and try to get it all out my system for a bit.

by Anonymousreply 6605/04/2021

The last time I took my mother out to lunch, as her dementia was progressing, she messed up all her food into a random pile then poured ketchup on it then didn't eat a bit. After that I only took her out in the afternoon and we'd stop in at a donut shop and I'd buy her a donut and coffee. She happily ate that and I enjoyed my donut, too.

Previously we treated her to special birthday lunch with a group of relatives and she didn't recognize her food when it arrived. "I didn't order that!" My sister quickly ordered something else for her, which she ate, and we all had to chip in for her two meals.

It's so difficult to watch them decline but there were funny and loving moments, too.

by Anonymousreply 6705/04/2021

Hope you are having a better day today. I wanted to check in with you all, and just say this: Dementia/Alzheimer's is very challenging for children. It is heartbreaking and very difficult.

by Anonymousreply 6805/06/2021

I found out after my dad died that it’s good to take trips into Dementia Land with the sufferer.

My dad saw a mexicans in trees waving envelopes of money at him, a lady standing on the roof holding a baby, neighbors smuggling drugs out of their garage, white cats trapped in deep snow, and his mother glaring at him from the corner of the room. These were always 2am events. I had wireless alarms on every door with a speaker that blared next to my bed.

My mistake was replying that I didn’t see them, but it doesn’t mean they weren’t there. He was hurt I didn’t believe him.

One thing I found out early on was that urinary tract infections make everything worse. If they start nesting paper on the table or moving their hands in a circular motion over the table it’s a sign of UTI. I had him checked monthly and it came up repeatedly.

by Anonymousreply 6905/06/2021

I went to see my grandmother in the nursing home while wearing a white turtleneck with a black sweater (it was 1990). She sprang up in bed yelling “Last rites! He’s here for last rites!”

by Anonymousreply 7005/06/2021
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