Is dementia really the worst?

Ed1937

We've all heard that dementia is the worst disease. At times it goes on for more than twenty years! But many PWD think they're just fine, and those who don't, are not typically in physical pain. So my take on it is that it might be the worst disease for the caregiver. Maybe not for the patient. What do you think?

jfkoc

I agree. I would put ALS at the top of the list.

toolbeltexpert

That's a tough call as each pwd is different, my dw agonize to tears at times. She maybe healthy otherwise but the pain she is in internal and she's at war with her mind. I stress over alot of little things, somethings I have to learn to let go,"I don't have an answer for everything and I can't fix everything" I tell myself that alot.

Beachfan

An interesting and thought provoking topic, Ed……

DEFINITELY worse- - or more stressful - - for the caregiver,  in this home anyway!  DH has been oblivious to his “condition “ from day 1.  (Almost 12 years ago).  Early on he would occasionally say, “What’s wrong with me?  I can’t do _____ anymore?”  Little by little, I did everything  for him to alleviate frustration on his part and to make a routine for him run more smoothly.  He was well cared for, content, and an outwardly “easy” Alz patient to care for; meanwhile, I was on high alert, walking on eggshells 24/7, waiting for the other shoe to drop.  The kids finally intervened and long story short, he is 10 weeks in a Memory Care facility and I am slowly reclaiming my life. 

When people ask about DH and I share that he is in a MCF, often the reaction is, “Oh, poor DH! How sad for him.”  I just smile and think: don’t be sad for him; he is missed and loved, but each of us is in a better place.  Everyone’s opinion on this topic will vary, but everyone’s opinion is valid and valuable. 

Ed1937

toolbeltexpert wrote:

That's a tough call as each pwd is different, my dw agonize to tears at times. 

I wonder if that could be because someone told her she has dementia? My guess is that she is in a depression, but I'm not qualified to say she is. My wife never knew she has dementia, and has never been in a depression since she was evaluated. She was in the room when the diagnosis was read, but did not hear it because she did not feel well, and wasn't concerned about anything but getting back home. I heard the diagnosis, and knew what it meant. She still does not know.

tcrosse

What makes dementia particularly bad is that Medical Science has little to offer in the way of help. We caregivers have to figure it out between ourselves, which is why this forum is so valuable.

A losing hand.

Ed, My wife had ALZ, and a very good friend of mine had ALS. I agree with jfkoc I think ALS is worst.    Take care of yourself and good luck,

Ed1937

Beachfan wrote:

Early on he would occasionally say, “What’s wrong with me?  I can’t do _____ anymore?”  

I hear that quite often, but it doesn't stick in her mind. She can still enjoy a TV program if it's not too complex.

Ed1937

A losing hand. wrote:

 I agree with jfkoc I think ALS is worst.    

My wife worked as a visiting RN for a while. One of her patients had ALS, and could do nothing but shed a tear. Absolutely nothing else. She went to visit one day, and found that his wife had a fatal heart attack, and was laying by his feet when they found her. So apparently he knew about it, but couldn't even call for help.

Mint

Of all the patients I took care of ALS was most heart breaking for me.  Several of them were fairly young with children.

DrinaJGB

As far as DH is concerned everything is hunky-dorey I guess it's true what they say--ignorance is bliss.I as his caregiver, however, am the one feeling the brundt of this never-ending storm of confusion and chaos.

GA-Mom

Beachfan, "Getting your life back" is so true. My DH passed on September 28, and I was both sad and relieved. I had been dealing with this for about 8 years. I didn't realize how much stress I was under until it was gone. My DH lived in his own little world and was kept warm, fed, and comfortable. He was only in MC for 2 months and he had an episode with AFIB. I think he threw a blood clot. Then he couldn't swallow and actually passed from aspiration pneumonia.

I have also been grateful he was not bedridden for years. He used to be a very active man and he would have hated that.

I hope no one feels guilty about having their LO in memory care. It really is a blessing. 

LadyTexan

I don't have children. I may be way off base here, but I believe being the parent of a child with a terminal, painful illness would be the Worst. To watch a child endure testing and pain and then learn the end is coming like a freight train and you are powerless to stop it. I think that would be the worst.

My dear husband's sister died of ALS. I often wondered which illness is worse. I decided that it is the one you have (or your loved one has).

DH accepts his dx. I accept it too. He is often frustrated. I am often frustrated too. On top of my frustration is a ton of exhaustion. DH does not have exhaustion.

I don't know what is worse. I have concluded that Alzheimer's is bad enough.

Marie58

If it's not the worst, it's definitely a close 2nd or 3rd. 

In our case, I believe it's been harder on me than DH. The year or so after dx was hard on him because he knew he had dementia and was frustrated by the long list of things he couldn't do. He was also worried about me, knowing I would be his caregiver, and he was scared of what was ahead at times. 

But then he became content and cooperative with just about anything and everything. Like Beachfan, my DH was relatively easy to care for. Now he's late stage 7 (bedbound, non verbal, has to be hand fed) and I don't think I can say he's content anymore. He's calm (Seroquel) but sometimes he looks scared or worried or sad. I see it in his eyes and how he sometimes furrows his brow. But I still think it's harder on me in so many ways.

Buggsroo

I think it is the worst disease for the caregiver. It is ok for the PWD if they are unaware of their disease. If the PWD knows they have dementia, I believe it would be the most tragic thing. To slowly see the lights dim is too sad. 

I do concur that the caregivers experience their special kind of hell. 

M1

For the adult patient, I think ALS would be the worst. There are more assisted suicides for ALS than for any other illness if I’m not mistaken. For the caregiver? Tough call. Alz is hard, but to me there is mercy in knowing my partner is not always aware of her decline. I think I agree with LT that losing a child  would be hardest. We all eventually lose our parents and our spouses (and friends), but we don’t expect to bury our children, at least in Western societies these days.

Talk about picking your poison. Shades of gray maybe.

Michael Ellenbogen

ALS is at the top of the list for sure as I know others with it.

June45

In addition to ALS, Huntington's disease.

billS

I agree, at least from what I can tell in my case I am suffering more than my wife. She is unfailingly cheerful most of the time. When she babbles and stutters and can't get a question out, I tell her sorry, I can't understand what you are saying. She answers, "That's OK, neither can I" and gives me a sweet smile. She constantly pops in and out of bed half the night, depriving me of sleep and yet she seems unaware that she is doing anything unusual. So as I am driven crazy by her behaviors she is content as long as she has someone to talk to.

Paris20

I can’t really answer that question with certainty. All I can say is that I thought cancer was the worst but now I don’t think so. My father had surgery for gastric cancer on November 27, 1995. He died exactly four months later, March 27, 1996. He suffered greatly. Our family was beyond heartbroken. BUT it lasted for four months. We received constant support from caregivers and Hospice.

My husband was diagnosed with Alzheimer’s Disease in 2015. He had already shown cognitive decline symptoms for at least a year earlier. He is totally unaware of his condition but he is unable to do anything that he once did. He cannot enjoy life very much. He stopped reading because he cannot follow a book or even a story in a newspaper or magazine. He used to fix anything. Now he cannot use a TV remote or a telephone. Words often escape him. He has no idea where we are or which loved ones are alive or dead. He is on drugs to control his violent outbursts. He wets his pants.

Anyone who is on this forum knows about life with AD. It is mourning a loved one who is still alive, watching that person fade away slowly, aimlessly. Unlike many forms of cancer, AD has nothing that might stop the inevitable. The individual with cancer still knows what’s happening, knows who he/she is and who family and friends are. So, I think for us caregivers at least, dementia can be worse than cancer.

toolbeltexpert

Ed1937 thats one thing I have avoided using the altz or dementia word. And  She is depressed at times. And I continue to tell her that there are many causes, many easily diag, I have been with people who had a uti and seen how that causes confusion not that my dw presents that.  This has been going on a long time.5 or 6 years ago she got lost when I was visiting a MC, she was with me and wanted to go to walmart 2 miles away, very easy to get to. She called to tell me she couldnt find her way back and I gave her directions but she could never get there even though it was only three turns total. I started walking to get her she was just across the highway in tears. I had wondered if when she left if it was a good idea, she had been there many times I kinda thought she would be ok. But since then she has had other things happen. I would love for her to be tested, we talked today about it, only referencing thyroid or B12 problems,  although she gets a b complex every morning but she just said I am fine i'll be ok. No matter I will do my best for her.

DrinaJGB

I feel I have seen the worst already.

 DH came home from 4 months of hospitalizations after suffering a viral brain injury from encephalitis. He was a total wreck. He was wheelchair bound, bowel and bladder incontinent,belligerent, argumentative, impulsive, violent at times, ate everything in sight --even coffee grounds and raw pasta, chewed up all the towels, shirts, pajamas, tee-shirts, washcloths, crawled across the floor on his butt because he refused to try to walk, yelled all night for a year that there about people in the house with shotguns, blood running down the railroad tracks, had intractable insomnia (so I did as well), bit and hit and shoved and pushed.Refused to do anything for his own recovery, and therapists refused to work with him which left it up to me.

I figure I can pretty much take anything now after surviving that first year.

  It is known as post- encephalitis syndrome. The debris from the rampant and necrotizing virus is free-floating in the brain, causing hallucinations and bizarre behaviors such as Kluver-Bucy syndrome (grossly inappropriate sexual behaviors.)

It felt as though we had both been flung straight into hell., and I really don't fear anything any longer.

RNS

Beachfan,

I appreciated your story about your DH.  I can relate to part of it.  My husband, age 87, had a brain injury about 8 1/2 yrs ago.  It immediately changed him and he began showing signs of dementia.  He has been diagnosed with vascular dementia and now ALZ .  I relate to the part of your story about doing things for your husband to keep a routine and make things as easy as possible.  I do this and because of that, I really don't know what stage of ALZ my husband would be considered.  I have a feeling he is in stage 5 and showing a few signs of stage 6.  However, lately he has rallied and been conversing some and being more alert.  This is probably temporary but it's nice for now.  My children are also insisting that I get some help.  I haven't had the discussion with him yet.  He is a good ALZ patient in that he is still continent, he doesn't wander, doesn't cook, doesn't drive, doesn't talk much, doesn't eat much, isn't abusive or violent, is still mobile and calls me mom.  I asked him why once and he said because you are my mom.  He has had hallucinations one time.  I'm not sure why I'm writing all this except this is the first time I've ever put it in writing and what you wrote stuck a chord with me.  I'm lonely, sad, also 20 years younger than my DH.  I want to have a life but this is so hard.  I love this group and the support and understanding here.  I love my DH and want the best  care for him and at the same time I wonder how long this will go on and then I feel guilty.  Thanks for listening.

aLZ patient is that can be

tcrosse

Is Dementia really the worst?

Maybe not, but it's plenty bad enough.

Jeff86

This is a bit of a parlor game, but ok—I’ll play.

For a PWD, it depends—on awareness.  For those with anosognosia, arguably it’s not the worst thing for them.  Lack of perception of their condition, of their illness, shields them from the blunt force impact of the disease.  Even as we observe them as severely and increasingly compromised, their lack of recognition of their progression protects them from a lot of pain.

Mostly, that’s the case for my DW.  But there are two circumstances in which it isn’t.  One is the occasional, uncommon insight she has into her condition.  In those terribly sad moments, she says she doesn’t know what she is supposed to or, at worst, that she’d like to die.  The other circumstance is when she expresses fear—of everything.  I sometimes wish I were inside her head to understand better what she is experiencing—but it’s clear that the very unfamiliar world is scary to her.  

From a caregiver perspective, it’s hard to imagine what’s worse.   I’ve seen both ALS and cancer close up with family and friends and, as truly awful as they are, I find AD the hardest to deal with.  Ambiguous loss for me means grief every day, and the indefinite time horizon means it stretches unknowably far into the future.  

Tfreedz

Welcome RNS, we are here and we listen. It is good to get out what you are feeling and it can help to ease the sadness when you communicate with people who know what you are going through. Sending hugs and warm thoughts your way!

Joydean

I have been thinking on this question. I have to agree with Lady T, loosing a child would destroy me. We have 3 and I can’t imagine life without one of them. My son, a police officer has come close 2 different times, God pulled him out and protected him, the time he was in the hospital was very scary. DH nearly died in a job accident 21 years ago, with all the broken bones he also had a head injury. Was in rehab for 3 years and never able to go back to work. I thought that was a hard time because I was his caregiver then, but Alzheimer’s is the 2nd worst. In my opinion.

White Crane

Ed, I know you've already had a lot of replies to this thread but I wanted to add one more.  My husband's father died of ALS and his mother died of Alzheimer's.  His father's mind never failed him but by the end, the poor man could not move at all and had to have a feeding tube.  One heartbreaking moment was when he asked my husband to please scratch his nose for him because it itched.  His mind was trapped in a paralyzed body.  He was 75 years old when he finally died.  My MIL who was in the early stages of Alzheimer's at that time took care of him with help from some of my husbands siblings who lived nearby.

My husbands mother on the other hand had Alzheimer's.  She never knew she had it and no one told her.  She was happy and mostly healthy and lived to be 92 years old.  He children who lived nearby took good care of her. 

Now that I am my husband's caregiver, I think ALS is worse for the person who has it.  And Alzheimer's is worse for the caregiver.  DH gets frustrated because he can't remember things and can't do all the things he used to do...but he doesn't know what is wrong.  I, on the other hand, live with the knowledge that he is only going to get worse.  And I have had to take on all the responsibility and make the decisions that he used to and watch him decline inch by agonizing inch.

CStrope

Another layer to this discussion is the financial aspect of Alzheimer's.  I continually deal with the slow, but continual loss of my husband on a daily basis, but I have few choices about how it will affect my financial wellness.  Our insurance system does not have a way to deal with that.

Michael Ellenbogen

I think your judgments are looking at this form the wrong view point. You need to look at if from the patients view not the caregivers. Trust me when I say this as I am supper lucky to have dementia and not ALS. Als may be easer for caregiver depending on the financials you have available.

 

I can sure you all my friends with dementia feel the same. 

JJAz

I don't know if it's the worst, but Lewy Body Dementia is awful.  All the symptoms of Parkinson's Disease AND Alzheimer's.  Hallucinations, psychosis, cognitive failure, memory loss, tremors, loss of ability to walk, inability to regulate blood pressure or body temperature, violent sleep problems, etc.  Heartbreaking.