Step families who refuse to educate themselves about dementia symptoms

CaregiverHelen

My 84 year old husband has Lewy Body Dementia and Parkinson’s. As his spouse and caregiver, I continually educate myself about all the symptoms of this progressive disease so that I can give my husband the best care possible. I do watch online videos, read books, attend seminars, belong to an LBD support group, read this website, check in with his doctors frequently, etc. to keep on top of everything as much as possible. However, my husband’s adult children and older sister, who only “visit” for short spurts now and then and offer no hands on caregiving help whatsoever, continually criticize everything I do. When he’s having a bad day and just wants to sleep or has no appetite, they blame me. Instead of trying to understand the symptoms, they see it as “lack of care” on my part. They want to drop by whenever THEY want without calling first, and if they see him really tired or feeling weaker, they blame me, not the disease. Everything is my fault. It’s stressful enough being a caregiver for your spouse with this form of dementia,  but this just adds a whole other level of stress!! How do folks deal with these constant negative comments from uninformed, toxic people??

Quilting brings calm

Start parking your car when no one can block you in.  When they show up unannounced … say I was just leaving  on an needed errand.  Your dads’ right  here.  He will be glad to see you.  I will be back shortly.  Then leave, even if it’s to drive around and circle back every 10 minutes to see if they left( so that your spouse isn’t left alone).  Run a quick errand, go thru a drive through to get a soda  

This accomplishes a few things.  It gives you a breather from him and then and it lets them see what 15-30 minutes of your day is really like. Have the book the 36 hour day out where they can easily see it and pick it up and flip through it. When you get back from your errand, tell them you need to run an errand ‘ next  Tuesday’.  Could they come back and visit about 2pm  that day?  

You don’t need to entertain people who won’t try to familiarize themselves with his condition and who criticize you. 

Ed1937

I might be wrong, but I think these negative comments usually come from the caregiver's in laws' families. I am not in that position, but if I were, I wouldn't hold back. I'd let them know that I am the caregiver, and if they'd like to try it for a few days, just let me know. I get along with just about everybody, but I wouldn't put up with that.

CaregiverHelen

As they say...thanks! I needed that. I will put that book out, too! I’ve always been a very happy, upbeat person, but this constant negativity towards me can really bring you down. You do your best to care for someone, but his uninvolved family only see my caregiving as some sort of failure to “help him get better.” I do all I humanly can. How I wish I COULD cure him of this terrible progressive disease. (Sorry, needed to vent)

CaregiverHelen

Or “step adults” who always saw you as the person getting in the way of their getting a bigger “inheritance”, not as the person actually loving and caring for their father. That’s all they seem to care about.  But help? No way. Too busy. So sad.

aod326

I often wondered why, if they thought I was doing such a terrible job, wouldn't that mean they'd want to be hands on involved? That way they could fix all the mistakes they clearly believed I was making!

Seemingly it was easier just to criticize.

My mantra became "No involvement from you = no listening to your criticism by me". It sounds easy to say, but ignore them. It's sad how many people on here have had similar experiences. They are unlikely to change (if they do, then great!), so switch your mind off to them. 

My adult stepkids were good, especially his daughter who was wonderful. I got to the point where I'd just text any important developments to his family, and was polite and courteous on the rare occasion they'd call or, heaven forbid, visit. 

I was hurt on DH's behalf that they didn't visit, or seem to care enough to research the illness, especially as they'd always purported to be a close family. At the end of the day, though, I know I did everything I possibly could to look after him - and they don't. And I don't ever have to interact again with them.

sandwichone123

>some sort of failure to “help him get better.” I do all I humanly can. How I wish I COULD
>cure him of this terrible progressive disease.

I think it's important to remind people that our loved ones have terminal illnesses. I might ask, "If he had pancreatic cancer would you expect my care to cure it? You know, brain illnesses are also terminal illness." Even talking to myself I sometimes compare his condition to that of someone with another terminal illness as a reality check.

DrinaJGB

The best advice from experience is to watch your back because it sounds as if they are starting the ball rolling in some sort of scheme that may only lead to trouble.. It could be they are looking for a villain and all they have is you.

 Do not trust them as far as you can throw them. You might contact your attorney and say you suspect undue influence is on the horizon so it can be documented before any shenanigans become evident..

Do not leave them alone with DH-- ever.

  My husband was critically ill and comatose on life support when the in law opportunistic meddlers started their total destruction of our lives; which merely added to the already train wreck his brain damage had done. I was gossiped about and criticized by his four siblings relentlessly--yet they offered no help whatsoever.

  But that wasn't the worst of it by any stretch of the imagination.

Because of their ruthless machinations I was forced to hire an attorney to save my disabled brain injured husband's inheritance rights.My critically ill DH who had nearly lost his life and lost his brain functioning from a near-fatal brain infection was betrayed by his own siblings for no other reason but greed.

 The usurpers have gone through 3 attorneys over the years because when discovery revealed gross fiduciary breaches, fraud and self- dealing they resigned. That has delayed everything over the years--making us literally having to start over again. One judge told the defendants and their attorneys straight to their faces that if this went to trial they would lose

 . It has been an absolute nightmare, but after nearly 10 years (yes, TEN)- is nearing the end.

  Just another sad example of how crisis can bring out both the best and the very worst of relatives

 .Be very careful. I cannot stress this enough.

 .There is no way to convey the kind of stress this has put on an already stressed out caregiver wife; causing numerous stress-related maladies It has been both an eye-opening and bitterly cruel experience.

 Good luck .