All my family has died from either Alzheimer’s. Massive coronary or cancer. I’m sure I’ll get one. Hope it’s the massive coronary. The quicker the better in my opinion.

I'm a total hypochondriac ever since my mom died of cancer at 47. I've been completely convinced I've had at least 15 different cancers to where I've had many invasive diagnostic procedures. It is awful. I'm starting therapy to try to help these thoughts.

I'm very sorry for your worries and struggles, phoggie and Chi. I find as I get older and since losing my parents and brother that I am starting to think about similar things, but not to the point that I'd call if a fear. More just being aware that the years are going by and that sooner or later hubby and I are going to have to face life and death issues. Not looking forward to either, but it's part of living unfortunately.

I'm so sorry for your family and your brother Phoggie. That's heartbreaking.

My mother had a heart attack followed by a stroke. That's one fear. She was athletic, skinny...ate healthy. Getting old kinda sucks....

I'm sorry about your family members Phoggie, and am right there with you. We have Lewy Body dementia on both sides of my family. It is never far from my mind. We never had any cancer in the family until just about 6 months ago and now both my mother and uncle have forms of cancer. It's a lot to take in.... I guess it's important to enjoy the present. I try to do that, but there are these clouds that hang around too.

I hope they can get help for your brother. My father (dementia) stayed in his home until the police (and then social workers) got involved :(

There is an 'up side' to having been diagnosed with multiple myeloma. Should I become mentally deranged, I could stop treatments that keep me alive in remission -- presuming I *get* into remission and that no other problem pops up!

Warehousing the deranged, with no hope of cure, is a torture for a whole family, emotionally, physically, financially. I don't have to live on with a healthy body and no mind. I have an 'out', if I want to take it.

phoggie -- I'm so sorry for your losses to Alzheimers. You are right that it may happen to you, but it hasn't happened yet. It may never happen. What might you plan for yourself in the event it does? Just having 'a plan' is a help.

I just went to an Alzheimer's presentation/training. They did say it was crucial to find out what the patient ultimately wants early in the progression of the disease (while they are still able to make decisions) and to put an advance medical directive in place. Dementia is my biggest fear.

No, no fears. All of us will die, I'm not sure I have any preference for one type of ultimately terminal medical condition over another. When my turn comes, I don't want it to be difficult for or disruptive to the family. My preferences are clearly stated in my written medical directives and powers and copies are signed and distributed to everyone who may need one. phoggie, good luck to you and your brother and family.

"Warehousing the deranged, with no hope of cure, is a torture for a whole family, emotionally, physically, financially. "

I love this thought and agree completely. Watch, a firestorm will result.

The problem is, what alternatives are there when dementia of whatever type hits?

There is dementia on my wife's side of the family. One guy got it in his early 80s and his wife remained in denial about it until the day he died. She thought he was just in a happy and trouble-free phase of life although prone to erratic behavior and not able to care for himself in a normal way. He got to the point he didn't recognize anyone in his family, he thought his wife was the nice woman who came to feed him every day.

We'd go visit him at the facility where he was (his warehouse) and she'd say things like "He's really happy today, he had vanilla ice cream for lunch". Or "It's cute, I got him new pajamas and it made him happy". I'd want to scream "Hey, don't you realize the poor guy has lost his marbles and this infantile behavior is all he can do?" I never did but she needed to hear that.

I most certainly do NOT like the idea of living to be too old to take care of myself. My grandfathers died of lung disease, both were smokers. My grandmothers both lived into their nineties and were pathetic,for lack of a better term. They both had dementia, one WAY more severe than the other. The "warehousing" sentiment is so accurate. It is cruel to both the person warehoused and their families.

I mostly fear losing my SO. He is almost 18 years older than me, and barring some accident or disease, will probably go before me. I fear having to face life without him. It makes me queasy and i tear up whenever i think about it.

I absolutely don't want to be dependent on others for my daily living needs. Of course, if one suffers from dementia, after a while, you don't know that you are suffering from dementia.

It wasn't my concern but rather that of his kids. He died almost 20 years ago, I just found his wife's reaction to his situation to be very sad.

Yes, it was sad, but she was coping as best she could.

"Hey, don't you realize the poor guy has lost his marbles and this infantile behavior is all he can do?"

Yes. She realizes that. Did you want to shove her nose in the reality like those uninformed dog trainers shove their puppy's nose in poop?

She loves the husband she had in the past. Do we stop loving people when their mind and body fail them? As Sushipup1 said, she was coping the best she could.

And it is good for the kids to see the caring, and not fear that someday, if they become mentally or physically incapacitated, they will be excluded, that instead they will still be loved, still be family.

Unless after he died the wife continued this behavior she may have also had a type of dementia. She may have just been one of those people that are told they always must show a happy upbeat face when they are any where that they might be heard by the patient. When I was attending Alzheimers group with my husband there were several people who had been told this. Most frequently by their religious advisor. They almost always wanted to know of ways to do this and were shocked that the leaders of the groups advised them to stop as it was not good emotionally for either of them.

One of the things that was discussed beyond that caregivers often died before the person they were caring was that often long term spouses and partners often developed the same type of dementia. KU Med was asking for people to join a long term program on this to try to find out why. We stopped going when my husband became worse but this was probably 5-7 years ago.

I would suggest if anyone is caring for a person that appears starting to have dementia like symptoms to try to join a early caregivers group. The group I attended also had a group for the people with early dementia that helped some but it mostly allowed the caregiver to be able to talk about their problems openly. Sometimes you will have to ask hard questions to receive real answers. Too many of the early group did not know about bathroom matters and that was a thing many had problems discussing.

Edited to add that you can never know what will happen that can flip a switch into full blown dementia. Through a combination of problems including a major UTI my husband went from having problems walking to not being able to coordinate his legs well enough to stand. By the time one hospital emergency room rejected him with a mild UTI and the next day when I had him taken to another he was in full blown dementia and unable to walk, talk, or even feed himself.

Phoggie, I am so sorry to read this about your brother. I've said a prayer for him.

My biggest fear is having my husband die before me. I've prayed that I will be taken first, but I also have to say "God's will be done, not mine" which I learned a long time ago.

"There seems to be nothing I can do about it," is not accurate. There are ways to decrease (and increase) your risk.

https://stanfordhealthcare.org/medical-conditions/brain-and-nerves/dementia/prevention.html

I saw people that did all of those things in the group sessions. While some of them may delay they do nothing to decrease the risk if you are going to develop dementia. mdln you are aware that there are over 70 different types of dementia? Also are you aware that what causes Alzheimer's is not even known but only suggested. So far there is one test that can be given that might be able to diagnose one type of Alzheimer's.

Emergency departments are seeing increasing numbers of elderly patients, so I recently completed an additional certification in geriatrics. When treating patients in their 90's, with no evidence of dementia, they usually reported a lifestyle consistent with the recommendations in the article.

Of course various forms of dementia can be a by product of poor lifestyle, other health problems or even medications. So to say you can prevent or slow dementia by addressing those things has some truth to it. However to say these doing all the proper things will actually make a difference is rather subjective as many clinical trials are.

The elder who doesn't have dementia is more likely to take better care of themselves. The one in early stages of dementia is less likely to do so. Then there are people who lead poor lifestyles who already suffer from various undiagnosed mental health disorders that may put them at a higher risk for dementia.

The article in the link itself basically states "we really don't know" when you cut to the chase. So I think Mailfleur's posts are pretty much on target.

I didn't expect to be cross-examined over a quick comment in passing but that's fine. You all have good intentions but are wrong about the dynamics in this particular case.

This couple's kids (all middle aged adults at the time) were very disturbed by their mother's ignorant reaction (their words, I remember it). They thought her conduct was disturbing and foolish but didn't push the issue. And also didn't tolerate her comments. She refused to speak to his doctors (they did) and refused to speak to them about his condition, insisting that she knew best. I remember her saying "He'll get better, you just wait and see". The doctors had predicted how long he had remaining before death and it was accurate to within about 6 months. She refused to consider that when told and was shocked by his death. No one else was.

Their kids then and since have seen a side of their mother they hadn't seen clearly before. She wasn't being loving, she was being foolishly stupid. She continued that attitude after his death and to this day. Her kids took that experience as a sign of her inability to deal with reality rationally, even when in possession of her mental abilities. Since then they have given her little latitude or say in the decisions that are needed for her well being. They have medical powers and speak to her doctors directly, not trusting either her understanding or ability to describe/accept what she's told. Correctly so, I would say, but again, it doesn't affect me or my wife at all.

I agreed with your comment Elmer. I wanted to say something but I decided it wasn't my circus. I got the feeling you held your tongue because it wasn't your circus nor your monkey. Had it been you would have spoke up. Sometimes the kindest thing is not to tell people what they want to hear but what they need to hear. The kids made the attempt because it was their circus, their parents.

My mom is 89 with dementia but wasn't diagnosed until she was 83. She is now in a memory care facility but she does know that there is something wrong. She did everything right in terms of taking care of herself physically and being socially active with lots of hobbies. The medical profession can take care of your body and keep it going but there seem to be no answers when your mind starts to deteriorate.

It has been a real struggle dealing with my mom during this time.

My dad was an only child and my mom only has one brother so we don't have a lot of past health/medical history from relatives to base our future on medically.

My grandparents all died of heart attacks in their early to mid 80's so there is that.

@chi - My thoughts are with you as you struggle to fight your negative thoughts.

@phoggie - I really hope that both you and I manage to avoid this horrible disease.

Yes, watchme, exactly. Thanks.

I already have mine. But, I wouldn’t call it a fear. I struggle with celiac disease, headaches, intense nausea, bloated stomach, tiredness, sleep issues, neck and back pain, and lately, an issue with my leg (it hurts to run or go down stairs). It’s hard to think I will ever be healed. But, God knows when and what time I will be healed. Right now, it’s tough. But it will get easier.

Phoggie, I will be praying for you.

I'm sorry you're worried about this. After years of taking care of patients with different types of dementia, it scares me too. My dad had dementia and today my brother, who's cleaning out his house, found a list of mine and my brothers' names and our dates of birth he had written down, in his dresser drawer. I think he was afraid he'd forget. He must've forgotten it was there eventually, because the last couple of years I hadn't gotten a birthday card from him.

Elmer, one of my brothers was like that with dad. Couldn't accept that something was wrong and needed to be dealt with. He effectively transferred that denial onto dad, who refused to move from his home or acknowledge that he had any issues and might need even a little help. With the two of them behaving as they were, no one could help and they chased everyone, including me and all his friends, away with threats- accused us of having malicious plans for him. It was only after the police became involved because they became aware of the situation, and then there was no remaining in that situation.

Even after he was moved to memory care, there was still complete denial and a belief (by that brother) that dad would somehow get better and that it wasn't actually dementia.

Some people might argue that that particular brother did the best he could to function under the situation, but he did dad no favors either in quality of life, or in allowing him to maintain relationships with the few people who had remained around him. It cost me my relationship with dad for the last few years of his life.

From experience, I can completely understand where your story comes from. I envy those who have families who are rational, realistic, compassionate, and able to rally around the person in need.

My worry is outliving my kids, grand kids. Don't think I could handle that.

I agree, Uptown...that is a huge fear for me also..even greater than Alz....I was thinking of health. My MIL had her oldest son and youngest son killed a year apart in traffic accidents and she never recovered from the trauma.

Chi, I feel for you! I had several breast biopsies when my kids were little and I've never felt so worried--I mean, I gave myself high bp and an upset stomach for years. I too have quite a bit of cancer in my family and I feel it will be an inevitable outcome for me. I say that calmly now but if/when it comes, I will feel utterly sick. My religion helps me very much, but survival is probably our strongest human instinct. My dd had much improvement with anxiety with talk therapy. Poor things, all my kids got the worry-wart gene from me. (On the bright side, I once had a teacher--middle child's--tell me this kind of worry is indicative of a child's intelligence, since those kids are looking beyond the here and now to possibilities in life.)

As for dementia, I hope if it comes I don't realize it. I'm pretty sure my dh couldn't handle it well so I hope he finds a nice-ish place for me. If it gets him, I'll do my best but am under no delusions as to how much I can do.

Elmer, it is recommended that one not agitate those with dementia by denying what they they are saying is so. By extension, I really don't see any problem with your wife's relative's wife also acting as if he's ok, as long as she had plenty of help. Where was the harm? Their kids were free to process as they wished.

I don't fear too much for myself.....well, maybe that I will live too long and be unable to care for myself. My dad died at 63 from brain cancer, but it was caused from the chemicals he worked around. The plastic that makes bleach bottles, etc. At that time there was a lot of brain cancer in guys who worked with him. Plus he worked around benzene too.

I don't know anyone else in the family who had cancer. Don't know of anyone who had a heart attack. I think my oldest brother died from complications of diabetes. He lived in Indiana.....so not sure. He was 86. So was my other brother when he died. I don't know from what, and my sister died at 84.

My mother died at 94. She had dementia, but didn't have it until she fell, hit her head, and had blood clots. She lived 6 1/2 yrs after that. She was so healthy....mowed her yard with a push mower well into her 80's.

I worry more about my husband. He has asbestosis. Had worked for himself most of his life....except for Army and captain on a tow boat...so not sure where he got it. He has trouble breathing, but he still works. Never smoked, drank or used drugs...you wouldn't think he would have trouble breathing.

My dad always said to me...."a damned horse will kill you some day." I have two young horses to break. I always wonder which one will it be. I will just have to go extra slow with them.

I have an elderly loved one that broke their pelvis and is now refusing water and food. We just took them to the ER and they put them on an IV, this relative checked themselves out of the hospital and is again refusing water and food and rehabilitation. Has anyone dealt with this?

sabbath7 -- Your loved one apparently wants to die. Could you suggest hospice care, where the object is to make the dying easier? No one in hospice will force food or water on someone who doesn't want it, but they can provide comfort for the patient -- and acceptance for you. (Sometimes, once this option is known to the patient, they may take another look at their situation and decide they will try to heal -- maybe not.)

" I really don't see any problem with your wife's relative's wife also acting as if he's ok, as long as she had plenty of help. Where was the harm? "

sjerin, I don't know where to start but maybe a small additional anecdote.

When he died, she was apparently in the midst of a project to make new cotton drapes for their bedroom window because "this will cheer him up when he comes home". He'd been in and out of consciousness for a few weeks before dying but preceding that had been months of conscious incoherence. If you don't find her denial of reality attitude very disturbing (as their family did), then fine.

Sabbath 7 - My father, who was in relatively good health for his age and lifestyle informed me one day that he was tired and ready to die. He informed he was going to stop eating. He asked that if we found him unconscious we would leave him be. He lived alone and we checked in on him daily. So he stopped eating, merely hydrating himself and drinking an occasional Ensure. Well he got pneumonia and was unconscious in his easy chair and a neighbor knocked. When he didn't answer she called 911. He found himself in the hospital and begged me to let him die. He wanted that IV out.. He already had a DNR. I spoke with the doctors and we compromised by allowing the IV to stay in for one night to ease his discomfort from the pneumonia. The next day "miss perky" rehab worker informed me that all we had to do was give him some anti depressants and he could live another 10 years. I sent her on her way. I was so angry I was near tears. Fortunately an older, kind nurse spoke to me. She asked me one question..... If your father was choking in front of you and you knew he would die would you help him? I looked her in the eye and said no. She smiled and said, then you understand and you are fulfilling your father's wishes. Bless you. He died peacefully within two days at the age of 90.

Wow, what a story Watchmelol I actually got chills reading it. I gently asked my relative at the hospital if they wanted to die and they said no, I said well your actions are saying something else. I feel so helpless.

I watched both parents gradually disappear into dementia, and I well know the agony. I worry that I’ll put my children through that long ordeal. For myself, though, I worry about blindness. Macular degeneration gallops through my family, and I can’t bear the thought of no longer being independent and being unable to read.

There is new research that diet plays a HUGE role in Alzheimers. A Keto diet (no sugar, no grains: just real food) can not only stop it from happening, but has shown a reversal for many patients! Some seems to get better almost overnight. Sugar is so unhealthy. It destroys our arteries and our minds. You'll notice more and more people are getting dementia and that's because we are eating more and more processed foods. You rarely saw people suffer from the disease before the 60's when the sugar industry lied and told us fat was bad for us. Also, taking statins for cholesterol is horrible for your body. Your brain is made of cholesterol so when you take cholesterol removing drugs, you destroy your brain.

Eating a healthy diet can stave off many age related diseases. Not all, but many.

Before the 60's it was called senile dementia and almost every family had at least one member that had it to a certain extent. It was rare that every older person in a family did not have some mental failure. This idea that no one had old age dementia "back in the day" is a new one mostly based on the use of the word Alzheimer's vs senile dementia. Since there are so many different types of dementia and until recently no real test for Alzheimer's until after death my personal preference would be for doctors to return to using a generic dementia rather than telling their patients everyone has Alzheimer's. In my Alzheimer's caregivers group before I left there were several who reported a different diagnoses than the original Alzheimer's that had lead them to attend the group sessions. My husband was one of those that was miss diagnosed but only found that out after leaving the group.

Per a rare nightmare last night, apparently I'm most afraid of earthquakes!

I do not fear Alzheimer since, thankfully, there is no history if it in either side of my family. However, both my sister and I are afflicted with type 2 diabetes and there was no history of that a short time back in our family history. I have learned there is diabetes on my Dad's side and there could have been undiagnosed cases in Mother's side. As we age, diabetes may take my sister and me. We've been living with it for 20 yrs.

A different thought has crossed my mind and that is my Dad died at age 82 from cardiovascular disease. I am 81 and my health decline is following his pattern. That gives me pause. The difference is that I am getting better health care than he had, and I am taking measures against problems and he did not, yet it is a concern.

I fear being kept on life support. My MIL was kept alive for 9 months after the family being told she was brain dead. Two of my DH’s sisters thought there was going to be a ‘miracle’ and she would wake up. Even when multiple Doctors talked to them they refused to have life support removed. DH and his other sister begged for it to be over but no.

MIL was a tiny little lady only about 4 ft 6 and about 60-70 pounds soaking wet. She was fed by a feeding tube and she blew up until her skin began to crack. It was a nightmare, but his sisters would say “I think she moved she’s waking up!”

I guess they were in denial, but you can’t fix stupid! Sounds harsh but there it is.

Yeah. I am seriously fearing that my "benign" knee tumor is coming back. They removed 97-98 percent of it but said they could not get it all.

I am actually terrified.

"I fear being kept on life support."

See an adviser and complete paperwork so that your wishes are followed with an advance medical directive along with a medical power of attorney (granting authority to act and make decisions on your behalf to a person or persons you know will carry out your wishes). That easily solves your concern.

You can't fix stupid. How true!

I do have fears for myself. My sister and I were diagnosed with a slowly progressive muscle wasting disease when I was 17 and she was 27. Told then that we would be wheel chair dependent in 10 to 15 years. Actually, we both kept on our feet with little difficulty till in our 60's. At age 70, for each of us, things started to change quickly. My sister is now in a nursing home unable to do little more than putting a spoon to her mouth. Six months ago, I was able to walk short distances with a cane. Today I must have a walker for those very short distances, then transfer to a scooter. I cannot stand unaided to do anything. After all the years of struggling, but somehow managing with a little help to do most things I wanted to do, this all seemed to happen in a matter of a few weeks.. I don't want to be so dependent that I need someone to wipe my butt, etc. I am now dreading getting up each new day. I don't want to do this anymore!

I am so sorry for all the fears and worries...and some of the already happening

bad things for a lot of you. Saying a prayer for all KT members. Just reading

your story lgmd...gaz.....I am so very sorry. I know that doesn't help, but I am.

Hugs and extra prayers for some kind of comfort for you.

Years (nay, decades) ago it sunk in that worrying about things I can't control is irrational. I might get cancer someday. I sure don't want it. But worrying about it does no good. I might get hit by a car, or murdered, or any number of things could happen. So why stress out over it? Deal with it when it happens. Otherwise you're just hurting yourself, and needlessly. I'm not going to do that.

The only person in my family who had Alzheimer's was my Mom so I don't worry about that too much. Breast cancer though on my Mom's side is another story. I lost both my sisters, my Aunt. Now my cousin who just called me to tell me she now has breast cancer. I am the only one left beside one other female cousin and my nieces. I am due for my mammogram

Cynic

I wish I could find your peace...I guess this has reared its ugly head again in my family...but glad you have found your peace with life.

To all the others...I am hoping your “fears” never come true for you or your loved ones. (((0)))