Terrible guilt

Jamaicabound

My DH is rapidly progressing and the further he goes the more guilt I am experiencing. I keep reading how diet can stop progression and possibly even reverse symptoms.  Has anyone else read this information and does anyone have evidence that it works?  I feel like I initiated diet changes too late when I retired to take care of him and that possibly this disease could have been avoided.  

Am I overthinking, overreacting? Is there really any way of changing the course of this disease? I am tearing myself to pieces with "what if's".

Any information, consolation, would be so greatly appreciated.

dayn2nite2

Diet, magic pills, prescription pills/patches....nothing will help.  The disease will march on and do what it does.

sandwichone123

There are people who make money off your guilt. When they advertise miracle cures, "things your doctor doesn't want you to know," secret nutrient cures, etc., they are looking to make money. None of those things will work. Western, mainstream medicine is really good at finding out what works (and making money off it).

A normal healthy diet with fruits and vegetables and whole grains is as good as it gets, but regardless of what a person with an illness eats, they still have an illness. In the case of our LOs, their illness is chronic and terminal and will progress regardless of how guilty we feel.

One thing you can do about the guilt, though, is take good care of yourself, as well as him. Find people you can talk to and be happy with, friends, your family, a counselor, this board. Do the things you love to do. Make an appointment for the things that make you feel better. Those things may help you feel more energized and happy, so you do not get dragged down by your spouse's illness. Also, stop reading sites that make you feel guilty. Any site that says you can reverse illnesses with diet should be avoided. You don't fix broken bones by eating more calcium, you don't cure appendicitis with apples, and you can't fix a brain illness with food either.

Whyzit

Along with the above suggestions I heard a message this weekend that makes a whole lot of sense to me and it is quite simple but may be difficult to maintain as we are prone to beat ourselves up. The message is: MAKE PEACE WITH YOUR PAST. The past is over, can’t be done over. Be kind to yourself and let go of it all. You will be a happier person and better caregiver if you do. Hugs to you!

Jamaicabound

Thank you all for your support but how do you make peace with your past when you feel it could have changed things   It is truly so much easier said than done.

Thank you all again.

M1

JB, I think all of the "what if's" are indirect wishes to be in control.  The hard fact to accept is that no, you couldn't have changed it.  It's happening in front of you, and none of us like to not be in control, it's very disconcerting.  Goes back to the serenity prayer--changing the things we can, accepting those we can't, and having the wisdom to know the difference.  I wish you peace....

dayn2nite2

Jamaicabound wrote:

Thank you all for your support but how do you make peace with your past when you feel it could have changed things   It is truly so much easier said than done.

Thank you all again.

By truly knowing that there was nothing you could have done to prevent the disease and nothing you could have done to stop it from progressing.

It is a degenerative brain disease that slowly destroys the brain.  You have to accept that keeping your LO safe and relatively clean is good enough.  Don't lose today's moments by beating yourself up over yesterday or last year.  

zauberflote

Some folks with early stages make sure they take very good physical care of themselves by eating a diet high in nutritious foods and low in empty calories, by getting plenty of exercise as tolerated, by sleeping well and enough, drinking plenty of water, not over-stimulating themselves with too much activity at once, and sticking to a predictable daily schedule. These habits are, of course, a good prescription for just about anybody. I am not under the impression that it slows anything down, but it can certainly make anybody better able to cope with stress which they cannot avoid.

Lane Simonian

Guilt is indeed a terrible thing.  It lies in a past we cannot change and plagues are present and our future.

I am going to give a very nuanced answer to the question of whether a healthy diet can prevent or reverse Alzheimer's disease.  A healthy diet can perhaps reduce the risk for getting Alzheimer's disease, but it does not guarantee it.  The reason for this is that there are likely multiple causes for the disease (diet, lifestyle, exposure to environmental toxins, genetics, stress, etc.), so that to prevent the disease you would have to identify each risk factor and remove each one in time to make a difference.  That is a very tall task.  That is why when people say my loved one did everything right and they still got Alzheimer's disease, it only means that some risk factor (or likely factors) they are not aware of contributed to the disease.  Dementia is not a random event, there is always some cause or causes some of which we might not even know about yet.

Alzheimer's disease cannot be reversed; it can likely be slowed with various drugs and non-drug interventions.  Some may only slightly slow the progression of the disease whereas others may have a more clinically significant effect.  

We do the best with the information we have at the time.  I get upset by organizations and pharmaceutical companies that trumpet minor alterations in the progression of the disease as some kind of great accomplishment.  One day we will do better.

aod326

Hi Jamaica.  As others have said, there is nothing you, or DH, could have done to change this situation.  This isn't a case of "if only I'd bugged him to stop smoking, maybe he wouldn't have lung cancer". (I'm not being judgmental about smokers; I also know that not everyone who gets lung cancer smokes. I'm just using this as an example of something someone might say.)

There are some conditions that mimic dementia and can be reversed; e.g., a significant deficiency of B12. I expect your DH has been fully evaluated to rule out those things? If he has, and this is dementia - AD, VD, FTD, NPH etc., etc. - then, as far as the medical and scientific community knows, there is nothing that could have been done to stop this starting, or its progression.

As Lane said, there are views that possibly lifestyle can increase the chances of avoiding dementia, but even that is not proven.

Rather than get stuck in the emotion of guilt, try to be rational: if dietary changes could stop or reverse progression, wouldn't everyone be doing that?!  If you get stuck in the past, you won't enjoy the present or be able to plan for the future. Tough love here: it is not easier said than done - anytime the thought comes into your mind that you could have done something, just say (out loud if necessary), "None of this is a result of my actions or inactions, and I'm doing the very best to care for DH today and every day." 

Stop thinking you could have changed the outcome! Oh to have that much power!