It just came to me families of AD and other Dementia patients are ashamed or embarassed to admit it to other people. It is similar to lesbian or homo relationships and they try and "keep it in the closet. EVERYBODY will announce to the world a family member has Cancer, MD, MS, Lou Geric, Heart problems etc. but how many times to they openly discuss memory problems.
I was like this at first, hoping for a magic pill, miracle or whatever so I wouldn't have to admit to his having AD. This mind set needs to be changed and maybe with message boards like this one we can have some success in public acceptance.
I couldn't find this on another thread except for spouse or patient so Joan if you want to move this to someplace else, feel free. The topics seldom have all the critera and are hard to weed out sometimes.
I think part of it is that you know that your children (at any rate) probably/possibly? worship their parents and don't want to hear any ill spoken of them - so it is the fault of the healthy spouse if there were problems. I know that was the case with me - every time I mentioned something to my sons, they would say, well, it's because you ride him.. Our daughter who lives with us knows different, of course, but her brothers took awhile. That's why last summer the California son was invited to come care for him for a week, the MA son is encouraged to actually deal with helping him when he comes down with family, etc.
When the afflicted spouse "knows" it, s/he may be embarrassed to bring it up, and the well spouse respects their wishes.
I think you have hit on something that many of us can identify with, lmohr. In my case, I was not hesitant to let our closest friends know because I know they will always be there for us and will treat DH respectfully and as much like they always have through the years. However, I was very much on the fence about letting it be known among our more casual friendships at our church. I am really afraid there will be whispering and tsk-tsking more than anything else and that people will pull back from DH---for a lot of folks out there who are not living with an AZ spouse, there does indeed seem to be a stigma. Anyway, that's my 2cents in a nutshell.
Our son (age 29) has seen some things and, although he doesn't want to talk about it or hear the "day by day" and "play by play" as it makes him sad and/or nervous, he is not in denial. And, he will always be there for me, if I need it. I have called him on the QT when DH and I are having a difference of opinion about something and he comes right over and suggests something to DH and the problem is solved.
Our daughter (age 26) has seen some things also but has taken a lot longer to admit and believe me when I say I am having a hard time. She wonders why I can't schedule a few days out to watch her little girls or why I "play everything by ear." Until recently, she has thought also that I was making things up. Her husband still does not think that there is anything wrong with him.
In another message, I visited about DH's reaction when daughter joked about "mom really does have a boyfriend." She and Son IL thought it was really funny at the time because they have heard DH talk about how he thinks I have a boyfriend and thought he was joking. He wasn't; he really thinks that I might. Well, I told daughter later that I dealt with his ranting about my boyfriend for three hours after they left and to please not do it again because it isn't funny. She apologized and didn't realize that it would cause problems. She is beginning to understand.
In our case, daughter and SIL think that I am talking bad about DH when I bring it up. Go figure.
Have you discussed end of life decisions with them? I went to a therapist for a while, and it was one of her first suggestions. So I talked about no feeding tubes, no antibiotics, and not replacing his pacemaker. You can't get more honest than that.
Have you suggested that they talk to his doctor? Or taken your daughter along on his next doctor's appointment. I've done that too.
I'm lucky. I don't have to deal with kids in denial. Even my son-in-law, who was having problems with acknowledging his own father's dementia now recognizes that both of the fathers are sick in much the same way.
Our son lives in California, so we only get to see him once a year. For the first couple of years, he also thought it was ME. It was Mom over reacting as always; it was Mom exaggerating; It was Mom being a perfectionist. Then last October, we went out to Calif. to visit, and he saw. He said that in thinking about it, the last time he remembered Dad being "Dad" was around 2002. Check the previous blog section, and scroll down to the October 07 blogs from San Francisco. The one I wrote when we came home was about adult children in denial.
My children aren't in denial and have never been. I told them all this year that we could expect anything at any time and they all agree on that accessment. However, they do not study about alz, log on to this message board or further enlighten themselves about the disease other than what I tell them. I think they prefer not to think about it more than they have to.
I keep them up to date on things he is or is not doing daily and the 2 daughters drop in or call daily.
Friends and family all knew that my husband had some problems before his diagnosis. After he was diagnosed, he was adamant about not having his children talking to the doctor and being involved in making decisions for him.
As he was still golfing at the time, I told his golf buddies so they would know to watch out for him. He eventually gave up golfing with them as he progressed in the disease.
I let family know through e-mail and phone calls about the diagnosis and have continued the e-mails to let people know what his status is and if anything has happened. This has been a good thing as I would never be able to handle making all those phone calls.
His children (my stepchildren) were a different story. I respected my husband's wishes on not allowing them to talk to the doctor but always passed on what the doctor said to them. Unfortunately, my husband never told them that he did not want them involved and that caused all kinds of problems. I felt like they were trying to take over and bulldoze their way through me, around me and anything they could do to control the situation. Some of the problems I caused myself by over explaining and sharing what was going on and some were caused by their complete lack of respect for the fact that I am their father's wife and am doing what he wishes. I was able to get my husband to express his desire to some other family members and some close friends so it wasn't just me that know about it Every now and then that whole stiuation still rears its ugly head and comes back to haunt me.
They live 1/2 way across the country and have not really seen everything that he has done and said - they haven't lived with it. They have made some interesting suggestions that show that they have no clue what is going on with their father and really don't understand what is needed to take proper care of him.
In retrospect, sometimes, I think that my husband knew his children better than I did and even anticipated their reactions to everything which is part of why I got left holding the ball. He trusted me to follow his wishes and take care of him.
I don't think anyone realizes how difficult our job is unless they live with the AD person and have complete care of the individual. I would like to try it, but they all work and without a complete interuption in their lives would not be able to handle it. With their jobs and the economic climate the way it is I don't want to inflict this on to them too right now. I can't imagine having to deal with step-children.
My husband's AD wasn't diagnosed for a long time after he probably had it. He had had a bad fall and was never the same, so for years doctors thought it was brain damage, but it kept getting WORSE! I went right along with them. And now, it is believed he's been sick for 10 years or longer (the fall was 8 1/2 years ago). He is in the last stages of AD and our youngest daughter just won't accept the fact that her beloved father is dying. Right at this moment, she's angry at all of us in the family (for various reasons) and one of the reasons is that she thinks I'm lying to her about her father's situation. I have had friends tell me that final illnesses of a parent can separate a family a lot, because there always seems to be one who can't accept the fact of their parents illness.
not telling decreases the support and love that comes from education, friends, and hope. not telling isolates. alzheimer's is not the face of a wheelcahair-bound drooling person. the good years can be enjoyed. memories made. we have to change the face of this disease. i know a grandmother who still enjoys her grandchildren. goes on trips with them. the pictures are memories. she gardens. roses and mom. i know a dad who can no longer drive but plays ball with his 13 year old. more memories. more laughs. more love. come out of the closet.
Oh, Judi, how sad. How sad for her, how terribly sad and difficult for you. I am so sorry... There is just no end to the ways in which this disease can hurt.
We have always been upfront with others about my DW's AD, IMHO it explains a lot about why she behaves the way she does and why she isn't always with me. I have also told our neighbors on both sides of us about my DW's AD, I don't want them to mistreat her in any way because of something she says or does. If they do see her doing something something dangerous or wandering it is my hope they will come to her assistance. One neighbor is super great, she went through AD with her mother and completely understands the situation. On the other hand the other neighbor is a dumb as a rock and doesn't have a clue about anything much less AD.
We also have some well-meaning friends who don't have a clue, but they are in the minority. A lot of people have quit asking me about her health. It does work to tell others, One of my friends at church helped me find her in a department store when she got lost Christmas shopping, he now understands the situation. She was supposed to meet me in front of the store on the first floor, she was on the second floor waiting for me. I had talked to him for several minutes before he went in the store and told him I was waiting for her. He found her on the second floor waiting for me. He knew she had AD. This incident happened a year ago.
Geez Jimmy, that reminds me of DH supposedly sitting in a chair RIGHT outside the dressing room i was using in our local dept store. NOT!! i wasnt in 3min and looked out, no sitter..vanished. i thought he understood enough but you cant underestimate the time they wont know or hold what you said. i had security and everyone in the dept store alerted that he was missing and AD. i cant tell you the panic i felt, i still dream constantly of losing him so it impacted me alot. well long story short, he was sitting in the dressing room NEXT to mine and didnt say a word when we called for him incessantly...i wanted to beat the living daylites out of him but relief let me settle down on the way home. after that, i wouldnt dream of allowing him out of site for an INSTANT anymore...that was yrs ago.. be careful the first time you lose them its not fun...Divvi
I can relate with you on this Divvi.....Defnitely..no fun...I too, worry constantly about losing him. He can barely walk, but it is amazing how fast they can get out of your sight. Just like a toddler child...Ever lose your toddler back before everyone had to keep them attached because of molesters?
When my husband was still at home he insisted to going to Home Depot. To preserve his dignity I shadowed him through the store. He couldn't see me but I could see him-felt like a spy. When it came to check out I went ahead of him and warned a very sweet cashier that he would need help using his charge card and to be very diplomatic. It went well that time at least.
I lost my DH once at K-mart when he left the store-fortunately I saw him walking on the sidewalk. Since then, I also shadow him whenever we are out. He loves Lowes and I take him a couple times a week. They all know him now, so everyone looks out for him. I always tell him I'll meet him at the cash register. Works so far. I give him money which he uses for his purchases - and he has one credit card - but never uses it, so that's a plus.
I lost my wife briefly today. We had walked to the elevator when I remembered something I wanted from the apartment. I told her to wait for me while I got it. When I came back she was no where to be seen. I ran down the stairs, thinking she might have tried to go on outside, but no sight of her. I went back to the elevator which was running up and down. There she was, sitting on a chair in the elevator, riding up and down, waiting for me.
My stepdaughter was kind of aloof, always promising to come for visits/holidays. Then she'd always have excuses (no money, no vacation time) and we often would learn it was because she went to Hawaii, or Mexico, or Cruise to Jamaica with her Mom and/or boyfriend. When DH's long lost granddaughter located us after searching for 10 years we were ecstatic and helped fly her out to see us. I had explained to her that DH had AD. Having learned the long lost granddaughter was coming, well stepdaughter got very excited and also came along (bringing her fiance' too). Unbeknownst to her she would find herself fully emersed in AD for 7 straight days. Then, a few months later, Christmas of 2007 she was receiving calls from DH, panicked or angry that I had left him, disappeared, and he was sure I was in her town. She got it even more then. And, this past summer she accepted a somewhat sarcastic suggestion from me that she come stay with DH for a weekend so I could go see my son and DIL. Believe me.............SHE GETS IT NOW, more than ever.
Oh yes, I agree completely - NOTHING shoots down denial like spending a week, day and night, not just an hour visit here and there, with someone with AD.