View unanswered posts | View active topics It is currently Wed Oct 22, 2014 6:25 pm



Reply to topic  [ 9 posts ] 
 Dealing with Children who are in Denial 
Author Message

Joined: Sun Dec 02, 2012 8:57 pm
Posts: 20
Post Dealing with Children who are in Denial
I am not sure where this topic should go but my problem is interfering with the care that I am giving my husband. My husband was diagnosed the first week in November with LBD and put on the Excelon Patch on Dec. 12. I have 3 grown married children. . . two sons and a daughter. My daughter, who is a phlebotomist, is having a difficult time accepting the fact that her daddy has something like this. It seems that everytime she sees him, he is having a good day. He had some rough days recently and she is blaming them on the patch (he fell the day after Christmas). I can't tell you how let down I feel when she acts like it's my fault that he's sick or that maybe there is nothing wrong with him in the first place. I was in tears just now when she left. I have given her the number of the neurologist to call for questions and told her that she can go for our next visit in February. It is hard enough that I am dealing with my husband's decline but to deal with that too is just so unfair. Has anyone else ever had problems with their family not believing the diagnosis? How did you deal with it? Thanks!
Patsy


Sun Dec 30, 2012 10:57 pm
Profile

Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Dealing with Children who are in Denial
Yes! When I first told my stepson, a physician, about the diagnosis, he said, 'That sounds kind of fishy, to me!'. Fortunately, his wife, a neurosurgeon, communicated with my husband's neurologist and agreed with the diagnosis and could also see the symptoms [she was actually instrumental in getting him to a neuro in the first place after he had refused].

I think his son was in denial because he didn't want to believe it could happen to his father and that--who knows?--it might happen to him some day. His older daughter, a former psychiatric nurse in the UK, was more accepting of the diagnosis and even researched information on LBD.

Unfortunately, his children haven't been very interested in his status or at all helpful in his care. But I have learned that you can't change other people and it's best just to ignore attitudes that are unhelpful and sometimes cruel. You are doing your best in a most difficult situation. Keep your chin up and keep on doing what you know to be best for your LO. God bless!

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Sun Dec 30, 2012 11:32 pm
Profile

Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Dealing with Children who are in Denial
Dear Patsy,

Oh wow, you hit a cord here, my children probably thought I was out of my mind when we were dealing with this as you say when they came he has great show time and I often thought when they my children left that they thought I was making it all up but I promise you your husband will NOT be able to keep this show time up and they will see it, when my husband passed and we had the funeral it amazed me how they all commented on how I cared for him so when they finally put it all together they realized how very difficult it had been for me and him !! So let time do its job for you and you now worry about the things at hand and mention to them there is a caregivers group for other family members, sadly I am not at my own computer right now dealing with a family matter but if you go back to the LBDA.org website look across the purple bar at the top and look for support and click there for the drop down menu. Good luck !

_________________
Irene Selak


Mon Dec 31, 2012 12:39 pm
Profile WWW

Joined: Sun Dec 02, 2012 8:57 pm
Posts: 20
Post Re: Dealing with Children who are in Denial
Thanks to both of you for those words that make me feel better about the situation. I did receive an apology from my daughter this morning by way of a text message. She said, "I am sorry I gave you a hard time. It's just so hard for me to accept it but I'm here for y'all". It just makes it so hard when she is here making comments like "the doctor doesn't know what she's doing" or "the meds are making him worse". Thank goodness he doesn't remember what she said later but at the time it makes him feel uneasy that the care he is receiving might not be good for him. Hope everyone has a Happy New Year!


Mon Dec 31, 2012 1:16 pm
Profile

Joined: Thu Apr 21, 2011 9:07 pm
Posts: 247
Post Re: Dealing with Children who are in Denial
Dear Patsy,
In our case, for some time it was my father who found my mother's diagnosis hard to accept and was suspicious of the medications. He knew there was something wrong, but he felt that if she would just try harder, or if the rest of us could figure out how to keep her mind active, she would not have so many problems. Then, when his efforts to get her to read, or to do a crossword puzzle, or to help him in the kitchen, came to the inevitable bad end, he would be frustrated and angry. It took a lot of time for the reality to sink in, as her symptoms worsened. And again, because he could see her both during "show time" when a friend or grandchild visited, or when she went to the doctor, and during the worst periods, he thought she just wasn't trying the rest of the time.

One thing that helped him was reading a couple of books. Pat's book, in particular, was helpful to him because it gave the very personal view of the spouse, and it was broken into very short chapters. He could pick it up, read a little, then stop and digest the content. He could read about "show time," for example, and see the inconsistent symptoms as part of the typical manifestation.

I'm glad your daughter is coming around. It's very frightening for us as children, too, for many reasons: we worry about both parents, not just one. We feel helpless sometimes as we are neither the directly affected, the daily caregivers, nor the people responsible for decisions. And, lurking in the background, there is the fear that we may someday be the ones affected, to the extent that the risk is at least partly genetic. Another way the books can help is by suggesting concrete, useful things that other family members and friends can do. Your daughter sounds like someone who wants to make things better and wants to help - maybe this will give both of you some thoughts about how she can help!

Best wishes, and hope that 2013 brings sunshine and joy where it can, and love and caring during the hardest times.
Laurel

_________________
Laurel - mother (97) diagnosed April, 2011, with LBD; died May, 2014.


Mon Dec 31, 2012 1:35 pm
Profile

Joined: Sun Dec 02, 2012 8:57 pm
Posts: 20
Post Re: Dealing with Children who are in Denial
Thanks, Laurel. You have helped me to better understand what her feelings are. This forum is so helpful and I thank whoever started and those that volunteer their time to listen to "us" :)


Mon Dec 31, 2012 1:41 pm
Profile

Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3395
Location: Vermont
Post Re: Dealing with Children who are in Denial
Hi Patsy - It is hard to be the primary CG and then have others question and/or challenge the care you are providing. It's good that your daughter apologized and it starting to understand the situation better. There have been many discussions on here over the years about CGs dealing with friends and family members who are in denial. It is really an energy-zapper, so try to ignore and know you are doing the best you can possibly do at the time. Sometimes those in denial come around and sometimes they don't, but like Pat said, you can't change their behavior or attitudes so just keep doing the best you are doing and try not to let them drain you.
Getting LOs to read about this disease (and possible treatments), attending dr. appts. (if appropriate), going to support groups can help ease the situation for some people.
Good luck, and I hope the others in your family come around and are able to support you and help with the CGing. Lynn

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Mon Dec 31, 2012 3:44 pm
Profile

Joined: Sun Dec 02, 2012 8:57 pm
Posts: 20
Post Re: Dealing with Children who are in Denial
Thanks, Lynn, I am finding that this is quite common. Happy New Year!


Mon Dec 31, 2012 4:37 pm
Profile

Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3395
Location: Vermont
Post Re: Dealing with Children who are in Denial
Yes it does seem that way Patsy. So many of my friends have become the primary CGs for LOs, usually parents, in the past few years. 2 patterns seem particularly common - dealing with people in denial and the primary CG not being helped by siblings or other close relatives. It's like a national disease or something!
Happy New Year to you too! May everyone experience more peace in 2013. Lynn

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Mon Dec 31, 2012 4:48 pm
Profile
Display posts from previous:  Sort by  
Reply to topic   [ 9 posts ] 

You cannot post new topics in this forum
You cannot reply to topics in this forum
You cannot edit your posts in this forum
You cannot delete your posts in this forum
You cannot post attachments in this forum

Search for:
Jump to:  
Powered by phpBB © 2000, 2002, 2005, 2007 phpBB Group.
Designed by STSoftware for PTF.
Localized by MaĆ«l Soucaze © 2010 phpBB.fr