I was wondering if anyone else has any family members who are in denial or refuse to accept the AD diagnosis. I have a sister in law who has this problem. When I first noticed my husand having memory problems and confusion and decided to have him checked out; then we were diagnosed w/ dementia; I tried to explain to her what we had found out about her brother, she couldn't accept it and denied symptoms that I told her about. She accused me of "projecting " symptoms of some of my patients (I'm a nurse) on to my husband. Three years later, and she still can't, won't or doesn't see what's happening? ??? It's very frustrating for me at times--although I guess it's not my problem if she can't accept it.
You are very right in acknowledging that it is not your problem. I have run into the situation with DH's family. His older sister and younger brother, hardly ask a thing. They are coming out to visit, but that's about it. His older brother is very supportive and open to what I have to say on the subject. His daughter's don't call at all. My kids and my family are much more supportive and caring towards both of us.
Bella - Yes. Very frustrating. My wife's 53rd Bday was Monday. Not a single call from her brother or 2 sisters. They choose to have their head in the sand & I truly believe one of them thinks that whatever is wrong with DW (it can't be ALZ), it has to be my fault. (she has also never come to visit) 2 of them live 20 minutes away and just can't be bothered. My mother and sisters are always there when needed. They came down Monday evening to take DW to get ice cream and flowers. Though DW couldn't understand what was going on, I sure appreciated it. The whole situation makes my blood boil while breaking my heart at the same time. Somehow I have to figgr a way to get over it 'cause it ain't ever gonna change. Thenneck
Most of us have run into that problem and it drives us nuts. I know it drives me crazy. It's not just family - it's everyone. Check out this blog I wrote on the subject almost 2 years ago - http://www.thealzheimerspouse.com/nothingwrong.htm
Our first neurologist who missed the diagnosis by a MILE said that I was "projecting" what I saw at school with my students (I was in Special Education - speech/language therapist) onto my husband. GRRRRRRR!!!!!
They don't want to know because if they do they have to acknowledge it. That brings it too close--"it could happen to them". Ever hear, "He's lived here all his life. He won't get lost."
IT IS NOT YOUR PROBLEM. YOUR JOB IS TO TAKE CARE OF YOUR LO. You can inform. You can answer questions. You can deny interference. You can fill your life and your LO's with those who do care, do listen, do help, do accept. That may not be a lot of people, but it will be the most important ones because those are the ones who will help you get through this.
As I said on another thread, my brain is filled with file drawers, cupboards, cabinets, etc. and some things are stored and only brought out when they present an issue. As soon as the issue is handled they go back into storage. That's where the relatives in denial are. I have way more things to handle up front and center, than worrying about their issues with our situation.
Love it,Carosi! When you said " As soon as the issue is handled they go back into storage. That's where the relatives in denial are. I have way more things to handle up front and center, than worrying about their issues with our situation"
It may help me to think of my mind as a beautiful old desk with so many drawers and cubby holes. I may open up a drawer and take a sneek peek at something but if it is unpleasant, I just close the drawer again and move on. As caregivers we all have enough "bad" to last us a life time. It can overwhelm us if we let it so everyday , just like you , I put things into storage and close the drawer..... Good analogy!
I think some people think "If you don't acknowledge the problem, it doesn't exist" I know my Father-In-Law did that for sometime with both his wife & my husband.
Yes--thank you. You are all right. I guess I feel better knowing I'm not the only one going through it. I do have a lot of support from my mom and my children, and even my FIL is more supportive now that he has acknowledged the problem. SO...I will focus on the support system I have...which now includes all of you.
I have found this DENIAL of relatives and others to be a problem for me... They seem to think they know more than a Doctor and MRI"s just by talking to him.... They decide he is fine and SOMEBODY made a mistake..." He's always been a little crazy".........Lawyers have said after looking him over.. "he looks fine to me" NONE of these people have bothered to find out what Alz. is beside memory loss.
I've tried to isolate him from all these people and found that not feasible, his family love him but even after warning them, they continue to encourage him to do things he cannot do......I have to deal with the results.....
My son in law causes me pain with his denial because he causes my daughter emotional pain.......His grandfather has Alz. and his mother who lives with them age 58 has all the signs... My daughter sees it but not her husband.
Tom's old friends have caused havoc in our life encouraging him to do things he cannot do after multiple warnings...."He seems normal to me!" I said."Yah..if all of what comes out of his mouth were true.....
Our lawyer for bankruptcy decided after meeting and talking to Tom that he was fine...She said she knew about AD because her Dad had it......I told her NOT to tell Tom specifics and she decided he NEEDED to know and told US together we had a month to find a new place to live ......so go home and start packing boxes today.....
So ignorant people in denial are a very sore spot for me.....
On flip side I have a great support group including a few of his family and ALL of mine.. ........ And this place.. thank God for this place.....Thank God for Joan and all of you.....I know I'm quiet... but I need all of you ......
Denial runs rampant doesn't it? Now that is eveident to even a turnip that he has alzheimer's.. now the thing some are saying is he is depressed. I just can't make them see, his decline is because he as AD!!!! Sigh. I wish they would do some reading!!! His symptoms are classic for his stage.
Use to drive me nuts, now I just nod my head and smile. BLAH BLAH ....
I still love that seagull analogy iggy posted awhile back, crack me up still!!
"She call them "seagulls" - they fly in and sh*t all over everything and then they fly away"
Yep, my life is full of seagulls, and clueless ones at that! LOL
Okay Nikki...You gave me my laugh for the day... I forgot about iggy and the seagull analogy..... Thanks for bringing that back.... I loved it when she said it but at the time I wasn't as overwhelmed with these ignorant people causing me so much extra stress in my life...... I love it!
In November 07, I wrote a blog that referenced adult children's indifference. It is #71 in the Previous Blog section on the home page - www.thealzheimerspouse.com. This is an excerpt that I think gets to the heart of the problem:
"There are many reasons for their actions. As long as they are in denial, they don’t have to face the disease; As long as they are emotionally distant, they don’t have to feel the pain of watching their parent’s decline; As long as they use their busy schedules as an excuse for their indifference, they don’t have to disrupt their own lives to face stress, emotional pain, and upheaval."
My two step-kids are in denial. The daughter sees him once a year and the son (who lives nearby) sees him about once a month. (If we're lucky )They both thinks he's fine. Maybe because they're so busy talking about themselves that they don't pay attention to what Dad says or does. I don't even bother giving them updates anymore. I had forgotten about the "seagull's" but it's sure the truth!
None of my dhs relatives believed me. They thought I was "doping him up" for no reason. 1 1/2 years ago I took him to see hus aunt. She is an LPN but is totally against pills unless absolutely necessary. After spending 2 wweeks there she has become my biggest ally. She keeps saying to me"I don't know how you do it!". It's dishartening that these people question what you are saying. Do they think you would make this up? Idiots. I keep remembering "Everyone Loves Raymond" when Ray does something stupid and Deb says "IDIOT". I laugh a little inside when I hear stupid people make such comments and I think "idiot!!!"!!!! If they aren't paying your bills you owe them nothing- not even an ounce of your time or thoughts.
I started a thread last july...ideas please, helping his children
I got so much support in that thead. ((big hugs))
But Trisinger's ((York)) reply was so great I printed it out to keep!!!
Here it is....
"Don't you just love people who aren't around to help you in your caregiving, but feel they have some sort of jurisdiction over the caregiving anyway?
Here's my take on it (for what it's worth):
If you aren't around the LO more than 24 hours in any given week, you have no say. If you haven't traded lives with me for at least 48 hours in a row, you have no say. If you have never taken the AD patient to the mall and out to eat by yourself, you have no say. If you didn't show any interest in the person before they got sick, you have no say.
My best advice, due to all the 'helpful' family that have wanted to tell me how to run things,....do NOT tell anyone anything! If you want to give Seroquel, give it. If you want to stop medications, stop them. If you are ready for a NH, do it. If you are not, don't. I think a lot of times we feel guilty for decisions we make, and we hope that someone else will make us feel better by agreeing. Then we are blindsided by people who don't see the big picture. From now on, leave everyone who is not an AD patient caregiver out of the decisions. Tell us...we'll understand. That's what this board is for. Tell everyone else that things are going on as well as they can be expected, and thank them for the interest. Our time is too short to have others second guessing us. We have enough to worry about!
Wow...that got me riled up. Think I'll go steal a dose of Seroquel for me...LOL ""
Loved it then, love it now... great advice to live by!!!!
I guess my situation is unusual. Our three kids are well aware of the situation. Because they live so far away, they can't do much hands-on, but the 2 girls check in by phone periodically. Our son has never been one to communicate easily, but I know he is concerned and aware of the situation. My sister and my wife's sister both understand what is going on. Our friends are also as supportive as they can be. Last night, at a church Mission Board meeting people were volunteering for various jobs. I said I really couldn't do them, and everyone reassured me that they understood.
WOW! You inspired me nikki--and you are totally right. I am so tired of hearing from certain people who have no clue, and after talking to my DH on the phone or chatting at a family gathering, how good he sounds..or looks. Denial ain't just a river in Egypt, as they say. Thanks all of you.
And if the seagull's have tried/ are trying to interfer. "As his Guardian, in consult with the professional's involved in his care, I will make the best decisions I can. If you cannot respect my decisions as his wife and caregiver, you will respect them from me as his Guardian." Pretty much what I sent them after they delivered a used street capable scooter to him, after I had told them he could not have it.
I had commented earlier about the denial we had experienced. I mentioned my hurt feelings to my therapist this morning and what a shock I got from her answer. I was commenting that I have stopped posting Jim's progress, updates etc on his family website, because I never heard back from anyone and that I had stopped sending emails to hisfamily, because again I never heard back. Dianne, my therapist, asked me if I knew what a "walk-on in a play was"? I said yes, she said, "in other peoples lives, you are just a walk-on"....... Wow did that shake me up. Everyone has their own lives and choose whats important to them. I now look at their denial differently now as long as they continue to keep it to themselves. As has been said above, it's the seagulls, that I can't take.
A few months after my DH had been diagnosed (6 years ago) our son-in-law (oops, ex-son-in law!) told all the rest of our kids that my DH was just faking it to get attention. That was very hurtful, but thankfully none of our 5 kids bought into it. My three kids are very supportive as are his two. It's just that his two don't seem to have the "time" to come see him or even to call and visit with him. I guess it is hard for them since he no longer reads or watches TV except for relaxing videos and perhaps they just don't know how to react when with him.
I really loved Nikki's quote about having no say. I agree totally. In fact, I think I'll keep it and give a copy to all the "well-meaning, knowledgeable" people I keep running into.
We don't have family so we don't have the denial from that source but I think my DH has been in denial about his sister (in Ohio). She has thought she is staying in the ALF for free. She has been told she by two people she is paying. Yesterday my DH who has AD asked why does his sister keep saying she is staying there free. I have told him and told him it is the Alzheimer's speaking. I got angry yesterday when he asked AGAIN so I yelled "She can't remember s..t". So far that has been the end of it.