# Losing Loved Ones to Dementia



## Keesha (Sep 17, 2019)

The stages of this illness are  devastating to witness. 

Is anyone willing to share their experience with losing a loved one to dementia?

How did it affect you personally?

Do you have any tips to help either party go through this?


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## Warrigal (Sep 17, 2019)

Yes. My mother, mother in law and a couple of childless aunties.

I don't believe I ever lost them. They were still there inside a fog of confusion. I began to understand that they were lost in time and space but could be reached by encouraging them to talk about their past. Their memories were good ones and very sustaining.

Because I knew their stories very well I would start conversation with 'Do you remember when...' while we shared a cup of tea. This ploy would allow them to recall old stories and we would often have a good laugh together.

When conversation was no longer possible I would sit beside my mum doing some knitting. I knitted many scarfs at that time. It seemed to be a means to be together without needing to talk. Then when it was time to depart I would never say, 'Goodbye'. I would simply say something like, 'I have to go now because I have to take the washing off the line'. Mum could accept this reason for me leaving and never made a fuss. I would assure her that I would come back in a day or two to see her, which was the truth.


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## MeAgain (Sep 17, 2019)

Don't know anyone who had it thank goodness but know it has to be a hard road to travel.


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## terry123 (Sep 18, 2019)

My sil's mother has it and she does not know who I am now when I call.  When she was well we would exchange scratch offs  and laugh about them. She would send me Florida ones, I would send her Texas ones and my sister would send her La, ones.  We enjoyed the conversations the 3 of us would have. She is now not sure who we are so we still call but try to watch what we say.


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## toffee (Sep 18, 2019)

it has to be the worst of illness' just the thought terrifies me 'cannot recall anyone in close family with it'
but many friends had parents with this -to lose the mind is beyond words for a human being ...in years to come but not in my time there will be a cure -look what they have done with aids now -- medicine' we have so much to learn but it all takes time ; life is so cruel for anyone who has it ...


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## C'est Moi (Sep 18, 2019)

My 85-year old MIL is showing the first signs; she is forgetful and has to be monitored with her medication.   So far she is still herself and recognizes people, but we definitely see the decline in the past year or so.


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## Ruthanne (Sep 18, 2019)

My grandmother had mini strokes that left her with dementia.  Even though it's not funny she was a bit comical when she would say "I just came up from having a smoke in the basement".  It was her old house that had a basement and not the one she was living in then.  She's been gone a long time.  I'll never forget the last time I saw her.  She was curled up in a ball and she could not speak coherently anymore.  She passed soon after.   My only advice is to see what they still have and not what is gone.


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## Warrigal (Sep 18, 2019)

I fully expect that if I am not carried off by a coronary or stroke that I will succumb to senile dementia. The thought does not terrify me at all. I am content to accept it if it is to be my fate.


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## jujube (Sep 19, 2019)

When my grandmother descended into dementia, I found it much easier on her to indulge her fantasies.   

When she'd mention having lunch "yesterday" with her next-door neighbor (back in her home state and who had been dead for 20 years), I asked how the neighbor was and what they had for lunch.  We'd reminisce about how Mrs. Smith grew the best roses in the neighborhood and how fat she was getting.  Grandma could talk for hours about all that.

When she'd mistake me for her younger sister, she'd be happy to see her again and I'd be happy to see my Grandma happy.  Win-win.

There is a strong school of thought that the dementia patient should be constantly "oriented" to the present.  WHY?  What's in the present that's so pleasant that they'd have to swim up out of their "fond memory pool" to face?  The room in the nursing center that's home _now_?  The slop that's the only thing you can eat now?  The aches and pains and indignity that is your daily life?   Why not just let them wallow in their memories, when life was better?

OK, off the soapbox.  I hope, when the time comes, I go fast.


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## A2ZGrammie (Sep 19, 2019)

Dementia is rough. I have a special person that is just starting to go through the process, and I'm not sure how to deal with it. 

I have been a caregiver to people with dementia in the past, and it is a very hard disease to deal with, and I think there is no understanding it. All you can do is try to be patient. When my mother was getting very ill, I would listen to her tell me stories that she had already told me three hundred times. Now I am starting to do the same with my children. I'm trying to control it. I don't want to have the same thing happen to me.


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## AZ Jim (Sep 21, 2019)

My younger brother has it and is slipping fast.  My SIL has to watch him full time.  Has to lock the gates on the property or he'll wander off.  God bless the caregivers...


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## SeaBreeze (Sep 21, 2019)

My aunt died from Alzheimer's in a nursing home, I was young then and never saw her that way.  She was living with family who could no longer care for her, she was never married.  I think about getting it, I am more forgetful now in my old age than when I was younger.  I think I'd rather suffer from any physical disability other than mental dementia to the point of not knowing myself or my loved ones and not being able to care for myself.


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## StarSong (Sep 22, 2019)

My mom had vascular dementia and my FIL is moving along the Alzheimer's continuum.  It's not easy for us and is worse for them.  

I like @jujube's style. Why indeed are we told to reorient them to the here and now, particularly if their current lives are limited and mundane? As long as they're not putting themselves or others in harm's way, what does it matter what decade their brains are in?


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## Warrigal (Sep 22, 2019)

The tipping point is when they start talking about dead relatives as if they are still here. This is just a short step away from them deciding to go looking for them.

My MIL lived in a villa a few houses from me and I could keep an eye on her every day. Her short term memory was very poor and one evening she had a fall that injured her collar bone. I found her the next morning but she could not remember her fall. After that I had to be there every morning when she woke because she could not understand the reason for her pain. 

She also had a recurring hallucination of a little red headed boy. I would enter her villa and there would be cushions on the lounge covered with a rug and she would tell me that he was asleep. This concerned me but my daughter who is a nurse with experience of home visitations told me not to worry because people with this stage of dementia could still stay in their home as long as they were not a danger to themselves. She was receiving meals on wheels and I would check to see that she was eating them and also had her eat with us fairly often. She and I liked the same foods. A neighbour would tell me what was happening as well.

It was only when she began to talk about her dead sister that I became alarmed. I had been on extended leave from my teaching position and was soon due to resume duty. We had a family meeting and decided that now was the time to start looking for a suitable placement. We found a very well run hostel for people with dementia. Each resident had their own bedsit with ensuite and a lovely garden that they could access but the entrance was always securely locked for their safety. A few years later we needed the same facility for my mother who was at risk of wandering.


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## StarSong (Sep 23, 2019)

Warrigal said:


> The tipping point is when they start talking about dead relatives as if they are still here. This is just a short step away from them deciding to go looking for them.
> 
> My MIL lived in a villa a few houses from me and I could keep an eye on her every day. Her short term memory was very poor and one evening she had a fall that injured her collar bone. I found her the next morning but she could not remember her fall. After that I had to be there every morning when she woke because she could not understand the reason for her pain.
> 
> ...



Our families also came to the realization that our relatives could no longer live alone. Like you, we worried for their safety. A good assisted living or memory care facility can be a godsend for all involved, including the person whose cognitive abilities are slipping. 

In GOOD facilities, employees are patient, cheerful, and well rested because they work 8 hour shifts. Caregivers are not also managing laundry, meal prep and cleanup, med dispensing, etc. There's a world of difference between an AL and "residential care" (the latter sounds a lot better than it is). My mother and I learned this the hard way. AL may be more expensive, but it's worth every additional dime. Every. Additional. Dime.


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## jerry old (Sep 23, 2019)

Starsong:    
               In GOOD facilities, employees are patient, cheerful, and well rested because they work 8 hour shifts.

I've  posted this warning before:  Be very careful where you place a loved one in a nursing home; if they become aware that no
visitors ever check on  Mom/Granny  she is placed in room as distant as possible from staff area, she gets little or no attention from staff.
If no one is interested in Granny, the nursing home employees certainly aren't 

Again, church affiliated nursing homes are best still: if you visit do not established a pattern of visits as in weekends..
nursing homes do not like visitors that show up unexpected, especially outside visiting hours.
Nursing homes hate unanticipated visitors:
"Oh, I was in area, thought I stop by and see if there are any problems...
This puts nursing home employees in a tizzy1
This is my 2nd post on this topic, certainly not my last


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## StarSong (Sep 23, 2019)

jerry r. garner said:


> Starsong:
> In GOOD facilities, employees are patient, cheerful, and well rested because they work 8 hour shifts.
> 
> I've  posted this warning before:  Be very careful where you place a loved one in a nursing home; if they become aware that no
> ...



Very true. Frequent visitors also send the subconscious message to staff that the person in their care is someone of value and is deserving to be treated as such. 

I don't know that I've been in an actual nursing home in at least 20 years. Hospitals, skilled nursing facilities, residential care, assisted living, and memory care, yes. But actual "nursing homes" (whatever they are), probably not. None of the places my parents or in-laws have been in were anything but welcoming to visitors anytime day or night.


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## Suzy623 (Sep 23, 2019)

My father had 5 siblings.  The oldest was killed in the war.  The second died at 82 with a dementia that took only 2 years to turn her into an infant. The next one in line is my father.  The fourth one is in the last stages of Alzheimer's and she knows no one, not even her only child or her husband. There are 2 nurses with her so she has assistance around the clock.  The next sibling had an inflamed pancreatitis and went from that treatment into Alzheimer's. His wife would not give him his medicines and wouldn't let hospice in to see him.  He died about 4 years ago.  My daddy's youngest sister died early last year from advanced Alzheimer's. 

Daddy elf, which is what I call him because he is no longer the daddy I remember, is generally doing well.  He has definitely gotten worse over the last 10 months because my brother died in December and my sister died in August.  It was a hard time for all of us and he seems to be more confused after their deaths.  I'm the only child living now and he rarely calls me by name. Before he would call me by my sister's name and vice versa but he doesn't even bring up my brother's or sister's name anymore.  Lately he has been calling me by my mother's name but, as I did when he called me by my sister's name, I just let it slide and don't bring it to his attention. He goes into the kitchen cabinet sometimes and pulls out things (peanut butter, vegetable oil, coffee creamer, and other odd combinations). Sometimes he leaves them on the counter and sometimes he puts them right back but in different places. Spice jars in the refrigerator, vegetable oil in the laundry room, peanut butter in another cabinet. That's why I started calling him Daddy elf.  One night I woke up hearing him walk down the hall and into the kitchen.  I got up to see what he was up to. He said he had left some bullets on the table but couldn't find them. A couple of years ago I had taken all the guns and bullets and hid them in separate places in my room. I gave some of the guns to my brother and only kept 2.  One gun belonged to my grandfather and the other was a small pistol that I felt comfortable holding and could use.  So I was sure he did not have any bullets on the table and didn't have a gun. But it took almost half an hour or longer maybe to distract him from looking for the bullets and get him back to bed.  And he still thinks his underwear should be in the medicine cabinet in the bathroom. I'll put them in his drawer, he puts them in the bathroom, and I leave one pair in the medicine cabinet and put the rest back in the drawer.  

I talked with the neurologist one day about the chances of me getting Alzheimer's. He told me that if you think you have it then you probably don't. And just because 4 of daddy's siblings had one form or another doesn't mean I'll get it.  Made me feel better. Or at least a little better.


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## jerry old (Sep 23, 2019)

Starsong
well said, a person of value


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## terry123 (Sep 23, 2019)

I got word today that my SIL's mother is being moved to an assisted living facility called The Palace in Miami.  24 hour care was eating up her savings. They will now sell her house and pay for her monthly care from the proceeds.  They can get more help there if needed. She is excited to be moving my brother says and gave me her new phone number and address.  So I will call her this weekend to see if she remembers me.  She loves my brother so much and still remembers him.  She usually associates me with him so I am looking forward to talking with her.


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## Keesha (Sep 24, 2019)

I guess my story somehow different from other people’s stories about dementia


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## StarSong (Sep 24, 2019)

Keesha, what category of facility is your mother in now?  Both of your parents will be able to stay in a long term nursing home, or will it be something other than that?  

I truly feel for you, and admire your character. Not everyone would step up to the plate for people who were less-than-wonderful parents when it was their turn to deliver.


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## Keesha (Sep 24, 2019)

StarSong said:


> Keesha, what category of facility is your mother in now?  Both of your parents will be able to stay in a long term nursing home, or will it be something other than that?
> 
> I truly feel for you, and admire your character. Not everyone would step up to the plate for people who were less-than-wonderful parents when it was their turn to deliver.


My mother was in critical care but is now in what’s called ‘alternate level care.’ This means that she needs 24/7 care but is being warehoused at the hospital. 


Thank you Starsong. 
It’s tough


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## Keesha (Sep 24, 2019)

One thing I’m grateful for is that there are professionals who look after seniors for a living and thank goodness for that because it truly IS specialized work. Work that I don’t have the ability to do. 

Right now in Ontario there are 36,000 seniors waiting for long term care beds. There aren’t enough facilities of care for our elderly. 

This isn’t comforting to know.


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## Linda (Sep 24, 2019)

I felt so sorry for my MIL before she passed.  When she was moved out of her bedroom ,at her daughter's ,to a care facility there were notes hidden all over her room.  They said "My name is Cowetta *****".  She had known for years her memory was getting worse and worse but I guess she always hoped she'd find a note to tell her what her name was.  It makes me get tears in my eyes to think about it.


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## jerry old (Sep 28, 2019)

Had three cousins taken by Alzheimer's ;  my older sisters calls weekly asks "Have you eaten yet?" That is all she says, when I answer her question, she hangs up,
We used to have long enjoyable phone conversations;  I miss them.

I used to be a great reader, a poor week if I did not read at least, one book. I'm losing the ability to read a novel, have many college textbook for
202 Lit, lots of short stories, poems...I can read those without difficult (so far). 

 My brain is a time bomb, I know it's inevitable. 
It appears to be a race between my physiological vs. cognition
 ( a joke I suppose, if I lose my ability to think, remember...will I know it?)  
  I've been in a lot of nursing homes, I certainly don't want to be in one as a resident.  
I've been looking for  an assisted living center, haven't found one I can afford.  
Your not aware when full blown dementia has taken over;  you are aware when the process is active

A scary time...Doc says learn a language, take a trip...so do the articles I've read.
This web site. with it's diverse topics is healthy behavior.  
I have one friend, damn it is getting embarrassing to continue to go visit him.  He is still working for a living; I feel like a haunt, showing up all the time.


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## GeorgiaXplant (Sep 29, 2019)

My cousin called last night to tell me that my dear 94-year-old aunt is in the hospital right now and being transferred to a home tomorrow. She's been suffering from dementia for a long while but he was still able to care for her at home but he said that she declined in a matter of hours to a point where she was kicking, screaming, spitting, biting, and using foul words he had no idea she'd ever heard much less ever used. Up until then, she'd always been a very proper lady.

The last time I went to see her was last summer because they live four hours south of where I live, and I can no longer make that drive in the very busy interstate traffic, six lanes for most of it. Once off the interstate, it's two-lane rural roads for another 20 miles.

He assured me that it really doesn't matter because she often doesn't recognize him, and if he mentions me, the response is "I don't know who you are talking about."

The only way I can cope with this is to remember her the way she was all my life, a loving aunt. We were very close and except for my cousin, the last link to my mother's side of the family.


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## norman (Sep 29, 2019)

Linda said:


> I felt so sorry for my MIL before she passed.  When she was moved out of her bedroom ,at her daughter's ,to a care facility there were notes hidden all over her room.  They said "My name is Cowetta *****".  She had known for years her memory was getting worse and worse but I guess she always hoped she'd find a note to tell her what her name was.  It makes me get tears in my eyes to think about it.


It does bring tears to your eves.   After mum passed while cleaning out her house I found note books filled with pages of the alphabet she practiced as her skills began to leave her. I did spend a lot of time with her, but I somehow now have a feeling of guilt that i did not spend more time with her as she was very lonely  after dad passed.


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## Suzy623 (Oct 16, 2019)

Daddy Elf hasn't gotten as bad as he will be getting as his advances. He was diagnosed with mild Alzheimer's about 7 years ago. Now he's at the stage where he forgets most things and has a hard time expressing himself. When my mother was in the hospital last month he kept asking me to take him to the jail to get my mother out. And he wanted to know if I had any idea what it would cost to get her out because he didn't have any money. I would tell him that she's in the hospital and we can't be there any earlier than 8:00 which was visiting hours for ICU. "Oh. I knew that. Don't know what I was thinking". Then 30 minutes later, "What time do we have to be at the jail?", or, "When will your mother be back from the store?".  He has not mentioned my brother's name since my brother died in December.  My sister died in August and he hasn't mentioned her name and doesn't ask where she is. If you mention his only living sibling, he doesn't know who she is or can't place her. I don't think he remembers my name most of the time but I know he feels he can depend on me to take care of him.

One thing that's frustrating is he constantly is thanking me for pouring him a cup of coffee or giving him his medicine, cleaning his bathroom, washing his clothes, cooking his dinner. Just everything. He thanked me for taking him and Mama to my sister's funeral. For taking them to the cemetery to visit their graves. He has to thank me for everything. If I put the margarine back in the refrigerator he thanks me. Don't know what that has to do with anything but I don't do these things just to be nice. After all, I was going to my sister's funeral too. And I wanted to visit their grave sites too.  And I want to help and do things that will make him more comfortable and give him less to worry about. He's almost 90 years old. It's time he just relaxed and did what he wants to do. I don't know whether that's an Alzheimer's thing or not but it can get so frustrating. 

One thing I do know is that throughout my life the family has said you can't get 2 Johnson's to agree on anything because they always defer to what the other one wants. And Daddy's family is so polite. Think: "Thank you". "No, thank You". "Thank you for thanking me". "No. Thank you for thanking me for thanking you", ad infinitum_. _It's true! So maybe it's Daddy Elf's upbringing that brings him to always thank me for every little thing. I'm not complaining. The world could use more of that attitude, especially in today's younger people. I guess I should be thankful that's all I get frustrated with in dealing with Daddy.  By the way...thank you for listening to me vent! Geez, did I just say that? Thank you? Maybe I'm more like my Daddy than I thought. Well, that's not too bad.


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## OneEyedDiva (Nov 25, 2019)

The doctors classified my mother's dementia as vascular dementia not Alzheimers.  At first I didn't realize she had dementia then I think I was in denial about it.  After falling three times at home and due to my own illness (heart condition), her doctor and my mother herself, felt it was best she go into a nursing home.  Here are some of the things I experienced:

~Once she had to go to the ER...of course I got there in a hurry.  When I walked in she said "How could you show your face?!! You stole my rent money and the landlord was chasing me around the apartment with a gun.  After he left...his wife did too".  My mother had lived in public housing and no landlord ever came to collect rent.  She and I were very close and loving together. She trusted me to take care of all of her business affairs which I did efficiently. I would never mess with her money because I was financially self sufficient. So that outburst shocked me.  I moved away from her until they took her in a cubicle so as not to further agitate her.

~She told me she was going to sue me and my son (he was always her heart) for taking her money.  In reality, what she had saved went to pay the nursing home for the few months before she had to go on Medicaid.

~At times she thought I was one of her dead sisters.. This was mainly at night when they go into the "sundowning" phase.  I would go twice daily unless I was sick. One time I got there about 7 a.m. and she was calling my name; she was lucid.  But the during sundowning stage (later in the evening), the dementia gets worse.  One night she told my uncle (who visited her every evening at dinnertime) and a cousin from S.C. who went to see her to *get out*.

~When I took my beautiful little granddaughter to see her (she was about 18 months old), she thought my granddaughter was a doll.

~She told me the story of someone (in the home) coming into her room and chasing her with a knife. There was no room in her room to be chased.

So yes, dementia is so sad.  You lose that person in a sense, before they pass away. My D.I.L. and her sisters are going through it now with their mom. My husband and I had gone through it with my co-wife.  I had to "teach" him how to respond to her and treat her because he wasn't geting that her brain was no longer functioning like he expected it to. It is something that people can't wrap their heads around.  My sister has been exhibiting signs that she is developing dementia.  One of my nieces (not her daughter) and I talked about it and my niece thinks her children don't want to deal with it. My sister is very stubborn and has a very strong personality but I hope they do something soon.


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## Keesha (Nov 25, 2019)

Deieted


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## jerry old (Nov 25, 2019)

I read a paragraph or two, of each post, then scuttle away-too hard, to sad and were all headed there if we live long enough.


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## Pepper (Nov 25, 2019)

No, Jerry, not All....some.


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## Keesha (Nov 25, 2019)

Deleted


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## Suzy623 (Nov 25, 2019)

It's hard for anyone who has a parent (or, in some cases, a child) with a form of dementia. Because they can turn on you and they can be frustrating for many reasons. I refer to my daddy as Daddy Elf because he's not the same person he used to be.

Daddy has always been a wonderful man and father. He still is. Fortunately I don't have to deal with his anger and accusations but with dementia that can change overnight. Don't have to deal with diapers yet either but do have to clean his room several times a week from when he'd get up during the night and be confused and pee in the bedroom somewhere. And I'll wake up during the night sometimes hearing him walk through the house. I'll get up and have to talk him back into going to bed. 

I've talked with so many people who are caregivers for one or both of their parents, grandparents, aunts, etc., and it's a crash course watching your loved one become a totally different person and having to deal with them as if they are a toddler, sometimes going through the 'terrible two's'. They all have a form of dementia but are still individual personalities albeit different personalities than what we remember them as. I do the best I can do and pray as much as I can.


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## Keesha (Nov 26, 2019)

Delete


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## Packerjohn (Nov 26, 2019)

My wife's brother & his wife has it at the same time.  Sad situation.  They didn't live long once they got into a care home.  Sometimes your body goes but I think it's worse when your mind goes.


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