This is my first post. I actually posted in a thread and then decided it might make its own discussion
If you don't mind I will refer to my wife as DW. (Darling wife) She is 61 and just got a dementia diagnosis after three years of MCI. We have been married over 38 years and have two wonderful children. She was a world expert in her medical field, the most brilliant woman I ever met. But when the patient is a physician there are some special problems. At this moment she is adamant about not telling people. She is lovely, good-natured and was always so introverted that she can just smile and laugh and almost no one in the group "suspects". I and our two grown children go along with the "party line", that she retired because. she did not agree with changes in her organization. I think she finds the "comedown" from being a keynote speaker at conferences to being totally dependent very hard.
I have retired from most professional work to be a full time caretaker. I can do some consulting from home if I want to. Compared to most, money is not an issue. She has no trouble with ADL, and can do most IADL with my assistance . ( I was always a very good househusband, cooking and laundry were always my department, lots ot photos of me ironing her presentation clothes at meetings)
I wonder if any others have similar issues with "concealment". Is it common? what do you do? FWIW when we travel she has no problem at all when I tell strangers (hotels and restaurants)
I do have other issues once I get up the courage to post them
Yes and yes. My husband was a physician and I can totally relate with what you are posting. After the diagnosis my husband said "I'm going to beat this." (Oh, really!!) I was a scientist so researching the prognosis of the disease educated me pretty darn fast as to what to expect. When he went to day care, the staff asked him if there was anything he didn't like. He replied "The word 'dementia.' I don't ever want to hear it!" He spent two years outlining memory books, making note cards and studying them for hours on end. The sad thing for me is that we never discussed his disease because he refused to, and I never got to say good-bye to him as his ship sailed over the end of the earth. He was and still is extremely good-natured and we played the social game you describe. I don't have any advice - I just had to go with the flow and suppress my feelings. As a couple, the Alzheimer spouse is no longer flexible, so all of the adapting is up to the caretaker spouse. This is the best place to get advice but know that many here have had bad experiences with physicians. That makes me sad because I know there are many really great physicians out there - bright, compassionate, caring individuals - my DH was one. I cringe every time I hear a story of a heartless, clueless physician interaction especially with this disease. The caregivers are already stressed and fragile and that is NOT what they need or deserve.
Crushed, welcome to Joan's website...it truly has been a lifesaver for most of us as we have been on this devastating journey with our spouses. You will find knowledgeable, compassionate and very understanding people here ready to offer advice or a shoulder to cry on. Some of us are really just starting the journey and some of us have been on it a long time...we can learn a lot from everyone.
My DH has FTD, not ALZ and a hallmark of that illness is a total denial (or lack of understanding/insight) that anything is wrong with them. Although that's technically not concealment, it is very similar in the behavior it creates. He has never acknowledged that he has any type of brain illness, even now as he enters the early part of stage 7 on the Fischer scale. Until recently I have never had conversations with friends/family in front of him regarding his illness because he would always shout out "Nothing's wrong with me" during the conversation. As marche says, you just go with the flow, because you will need to do the adapting.
I think it's particularly hard when a physician or other scientists are diagnosed with dementia because they more than most understand what the diagnosis means and what the prognosis is, and if they don't have a full understanding initially, they certainly have the resources to find out quickly.
Feel free to post whatever your concern are, we're here to help.
Crushed, I can relate to what you wrote. I am a retired physician and my DW is a biochemist, much smarter than me (which is why I hesitated to date her in highschool). She was diagnosed with AD about 10 years ago, but managed to conceal it for quite a while. I remember people at church suppers telling me that they couldn't see anything wrong. Fortunately, she did not mind letting people know that she had AD when it became more obvious.
Unlike you, I was not a "good househusband". When I had to take over the cooking it was quite a chore, but since I was a chemistry major in college, I could read recipes.
This June will be our 60th wedding anniversary, but she does not realize it. Our 3 kids are very supportive.
We never told the neighbours and his progress didn't affect his ability to speak so he could hide his condition fairly well. It was only this year that I finally started telling people because we couldn't cover it up any more. Interesting how people disappeared once they knew as if they might catch it.
I saw this on a Canadian TV show, The Nature Of Things on Alzhiemers. There is interesting research at the University of Toronto....if memory serves me right...that they have planted electrodes in the brain of people with EOAD and the results so far (5 years) is that the disease hasn't progress and the brain is regenerating itself. Still in the very early stages.
Welcome Crushed - yes this disease is crushing the root of our marriages and lives. They will never be the same.
There are those already that posted and others to come that will tell about their spouses denial. Some never do admit they have a problem because they do not realize it. My husband has a family history of AD so it was no surprise. He was diagnosed March 2008 and still does his ADL's but he could never take care of himself as far as finances, shopping,etc. and he surrendered his license this fall, so can't drive. He has never hesitated to tell people he has Alzheimer's until now. Now I notice he is quick to tell people - maybe he no longer is aware of the need to explain why he repeats things and forgets what they say.
We moved into our Motorhome in 12/2004 and have traveled all over the country working in RV parks and campgrounds. He had to quit in 08 but I kept working. Last May I finally worked my last job because I did not trust leaving him home alone - guess biggest fear was him turning the stove on and not turning it off filling the place with gas. His dad was a runner and he gets antsy and needs to go walking.
I am so bored not working even the part time work I was doing. Try to keep something outside your AD world so you do not get swallowed up by it. This disease is hard on caretakers too - maybe harder.
Crushed My DH doesn't want anyone to know. He has AD but also FTD. He says that he is getting better and he just needs to try harder. I just agree. I have had to tell neighbors because he has walked off when I am in the shower. I just asked if they see him walk down the street to stop him and talk to him until I get outside. Everyone we know also knows he has it. He is late stage 6, so harder for him to hide it. He tells everyone he retired early. We have been dealing with initial diagnosis of MCI since 2005 and then AD diagnosis in 2007. He does not like the words Alzheimer's, dementia. At first everyone said you cannot tell anything is wrong. That would upset me in the beginning. But as I said he cannot hide it now. I too quit work to be a full time caregiver. I miss work and seeing people. I will be looking into placement in the next few months. I said I would never do that, but I was nieve. My DH is 61 and I am 52. I am sorry that you had to join us, but everyone here is so nice and has great advice and comfort.
Crushed, Its only been in the last few months that my DH has been more open about his diagnosis of AD. But up until his most recent visit to his PCP, he was in denial. But at that particular appointment, he suggested to the doctor that he get a second opinion, and she laid out for him all the testing she had done to rule out everything else, and since then he has accepted his diagnosis, which was made in September of 2012. I had known something was seriously wrong before that - he was my househusband while I worked full time, but I retired before his symptoms became noticeable to anyone but myself. Its impossible for him to hide them now, even if he wanted to, and I have found that once the word is out that he has AD, it is easier - the people we know split into two groups - those that are truly willing to help, and those that, as Amber put it, treat his illness like they might catch it from him. And you do need those people who are truly willing to help - it takes a village to raise a child, or to keep a person with AD safe and well looked after.
If you go to the website for ALZ advocacy organizations (sadly) you will not find 'denial' among the list of normal ALZ symptoms but those of us who have experienced it, know that it is actually very common.
At one time denial was a common symptom of a heart attack - "No it is not a heart attack, it is just indigestion". Now a days ERs see tons of people with indigestion who are convinced they are having a heart attack.
I believe that today it is easier for people to say 'heart attack' when they have gastric pain because open discussion of heart attacks have made them less shameful and current treatments have made them less terminal. Two things that are sadly lacking in the AD world.
Losing your life to AD is NOT EASY! Especially when you were at the top of your profession. Drop dead suddenly and you are a hero. Fade away slowly and the world seems to forget about your many accomplishments.
There are lots of good suggestions and advice above. My 2 cents is to begin by letting AD into your marriage. Talk about it openly with her, discuss the future and discuss how it will affect your relationship (it wont, you still love her, etc.) Once it is an open topic in your marriage then bring in any children, then other family members. Eventually your social community will know.
Right now AD is considered shameful (it should not be - its just a disease!) but as more people come out the shame will eventually be lifted. Until then do realize that keeping it a secret will only make an unbearable situation worse.
And know that you found the best place on the web to find spouse support. Welcome. Jim
From m-mman*: "Losing your life to AD is NOT EASY! Especially when you were at the top of your profession... Fade away slowly and the world seems to forget about your many accomplishments."
I want to ! this and underline it too.
I understand my husband's denial (FTD) because even with what he considered his precautions what m-mman* said is exactly what happened. In the early 2000's when he knew he faced cognitive problems, he chose another neurological disease. It was one of those involved in the differential dx which took a long time anyway. He decided that "when and if", that was the disease he would claim.
Our next door neighbor is a physician, as well as a neighbor across the way. My husband was very fearful that they would catch on. He was very vigilant about keeping his distance, his secret.
I went along. This was his decision. As the years went by he lost his life to dementia anyway but it was not for me to betray his secret. And the associates and so called friends left anyway because he did, of course, fade away.
My DH chooses to ignore the fact that he has Alz. He has never used that word in six yrs since diagnosis. He is upbeat the majority of the time. The closest thing to a conversation about it has even at bedtime sometimes He thanks e for being so good to him. And tells me how much he loves and appreciates me. That's Ben quite some time ago now.i think he has forgotten he has it, actually. He just wants me near to think for him. But, my husband always was one to sweep any unpleasantness under the rug. He prefers to think about positive thoughts!
My wife knows that she has FTD, though she doesn't understand many of its implications, and a TBI. She also realizes that most of her deficits are from FTD and not the TBI.
When she first had the FTD dx she kept it hidden from most people. I made sure her family and close friends knew the truth and they knew not to let her know that they knew. Over time she let more people know about her dx, and when she was going to move into an ALF she pretty much let everyone know.
For a while she would let people know about the TBI. It helped explain why she was no longer working. But she also spend 2-3 years trying to hide the fact that she no longer worked. For me it was much easier to tell the trust, but it was a hardship on everyone to keep the fact that people knew hidden from her. If they didn't know life would had been more difficult for us.
Thank you everyone. To my amazement DW remains good natured in the face of adversity. When she first saw the "dementia" diagnosis She said "well at least this will stop the nonsense from Social Security" . SS had been foot dragging on her disability claim with MCI. In three weeks we had over a year's back benefits. But her best joke was after a particularly pleasant romantic evening she said "I can't do math, but I'm good at sex, Does that make be a Blonde? I assure you I hold on to every funny moment. The sad moments are also memorable. She turned to me a few days ago and asked "Am I a doctor any more?" I said "you still have a license, but agreed not to practice, but you have an MD so you will always be a "Doctor"". OK she said, I can go with that. I also use the term "fade away" Once in the lab we ran colored clothes through 100 wash cycles with bleach. They measured the fading of the colors as they finally went to gray. It is what I feel like I am watching. Her Math skills went first. She had graduated Summa cum laud in math and suddenly could not add. That was 3 years ago. She had, by chance, been shifted to a position where she could have no effect on patient safety. that allowed her to stay "working" in a sort of consultant position for a while. Then she went on sick leave and finally disability retirement. We do have our first grandchild, which does help. She has no problem with my professional colleagues and friends knowing, since they are not part of her circle. Like Paul C I think more people know than she suspects.
Our children's reactions are difficult to describe. In fairness they are young married professionals, with husbands, houses and in one case a child. One Child just finished a grueling but first class Ph. D. The other is a public interest lawyer. They are always ready with statements of what I should do, but find it very difficult to figure out what they can do. I personally think DW's concealment makes is easier for them to rationalize "getting on with their lives". I can't blame them. The truth is I was always the family "go to guy" on care taking. I took care of my own grandfather as a teenager, my wife's grandfather as a student, My father in law and in part my own Mother (who had dementia) . I write case notes for the neurologist, who says I do a fabulous job. I can afford the travel we do as "respite" . I can do my professional work at home as long as I have a computer.
But I do miss the people I used to see (many are in Europe) That takes bigger chunks of time than I can create without DW feeling like I am ignoring her needs. I can easily take her, but she either stays in a hotel or I need to find her a companion for the day. She resents and rejects the need for a companion. I think it is simply that I know her so well I can make things happen without her feeling disabled
Thanks for all the kind thoughts. I know I ramble a bit at 6 Am
Hi....ramble away that's what this forum is for. I've been here since 2007 just after Joan started this safe haven for us to come.
Some spouses come from loving marriages, some OK and some just plain bad. I had a good hubby for the first 25 years and now the last 8 have been tough. I hope your wife stays happy and you have not too many bumpy roads to travel. But the main things I and others always want you to remember if/when things go off kilter is it isn't her it's the disease.
Crushed - Take every opportunity you can to travel together while you still can - the time will come when that is no longer an option. Others on this board will have the same advice. We used to travel extensively. Our last real trip together was in the fall of 2010 - we were away from home for a month. An overnight stay in a hotel this past May was a disaster, and we don't travel at all anymore.
Crushed, I can relate to the way you describe your Children's responses to your wife's diagnosis. My youngest is here for me, the older one who lives an hour and half away is great at telling me what to do. I spoke to him on the phone the other day and told him I would have to try and find someone and pay them to sit with my hubby when it becomes apparent I cannot leave him alone. He said it sounded like a good idea. No offer of he himself coming to help even for a couple of hours. My youngest one who is only 22 and lives with us, said that the way he looks at it, is that we will have another child living in our house in the future and we will just have to take turns watching him. He does work full time but still made the offer. My hubby was diagnosed December 12 and we haven't seen our older son since then. This after he told me we should move to his town so he can visit his father every day. Not even a phone call except on Christmas day. With regards to concealment, we have told the people that matter. Other's do not need to know as it is not completely obvious at the moment that Paul has Alzheimer's disease. I don't want people talking down to him and want him to be treated with dignity. Not everyone understands this disease nor it's stages.
I need to be fair to my kids. I said they " find it very difficult to figure out what they can do." I did not mean to imply that they would not "spend time" with her. I write this as we all share a house for 3 days of "mini Vacation". The problem is scheduling and activities not goodwill. They simply cant plan far ahead. Our oldest just defended her PhD, and our grandchild is under one year old. Fitting time for DW into that environment is difficult and conflicts with my desire to take DW on travel. Their "Grandmother" just died over Christmas (my step mother in law, wonderful lady) So that soaked up every free moment over the holiday. They spent an hour last night teaching her to play candy crush on the IPAD.
DW has no issues with concealment while traveling. I do use the term "neurological impairment" when I ask someone to check on her in the ladies room. (problem with multiple exits) I join her in the dressing room when clothes shopping (AFTER suitable notice). But one relative acted so horribly at the funeral towards others DW said THAT is why I do not want that person to know. And DW is correct, that person would be dreadful to her.
She is right at the stage where one doctor would day MCI and another would say dementia. DW knows that whatever a doctor says would not change her condition. But I watch with wonderful warm person whose work has benefited many thousands of people fade before my eyes. I know what is coming and some days I find it hard to breathe. thanks for reading.
Denial and unwillingness to let others know can last a long time. I was sure that my wife, Clare, was showing symptoms of Alzheimer's when she was 60 but she wasn't diagnosed until age 63 in 2009 and even then she was in denial ... and remained in denial for another 2 years after diagnosis. She was adamant about not telling anyone. But, of course, despite her ability to mask many symptoms, close friends could tell something was wrong.
As others have already noted, you have come to a great site for comfort and information. You may want to pend some time reading past message boards and other postings. Good luck with your dementia journey.
my wife, now in a dementia care facility, in my opinion, was always in denial with others and most of the time with herself. Maybe to your wife, like mine, saying that she's all right, has no memory problems, etc. is the way she "sees 't Everyone else is screwed up, not her. Xmas was always her big day. She always had thrown a party. I unilaterally decided to tell everyone that was invited that my wife had AD; most of them had already guessed that to my partial amazement. One of my stepchildren got mad at me because I didn't tell them anything about my wife's AD except it being a memory problem. When I thought about it, what difference would it have made to them anyway.
Symptoms arose while my wife was on statins so we both nursed the hope for a time that it was a chemical impairment. Our children and their parents in law are fully informed. I suspect my whole extended family knows but they also (amazingly) have a sense of discretion in not saying anything. My sister called and asked How is DW? I said "She is right here" and the topic was dropped. Our legal affairs are in order. DW has no problem with me describing her to strangers as "cognitively impaired" She gets very unhappy if I say dementia. When I go to this website I keep a "one key" that flips me to a financial blog. I found a local spousal support group for all kinds of chronic conditions. I'll see how it goes.
crushed while on one hand you are honoring your wifes wishes to conceal the issues at hand, some of us found that after we came 'out' about the dementia to the rest of the world it was a lot easier on us both. many family and friends and strangers for that fact, as we have seen above, had already guessed cognitive issues were ongoing, and appreciated us being honest with them. they have a better sense of how to handle being around us, and wanting to do whats right. helped our spouses. by trying to say the right things even though they can see the impairments. so I am just saying at some point, it may be prudent to hand out the 'my spouse has alzheimers' when appropriate to help maneuver thru the ongoing slides later on. as long as shes aware, then you have to be cautious of course. my DH was also one who was in complete denial of anything wrong, we used the term 'memory issues' for as long as possible. he never knew or used the word alzheimers. divvi
Many folks with ALZ have anosognosia, or lack of insight - it isn't denial but absolute inability to recognize there is any problem. I think it makes it harder for the caretaker. The person that doesn't recognize there is anything wrong is actually less upset by the situation, thought the situation is unshared and the burden lies with the caretaker. My partner was in relative bliss for a couple of years engaged in detailed drawings/paintings, completely unaware of the problems I was going through. But I was grateful, as another friend who could understand she had serious memory problems was depressed and grieving the loss. Once he asked me what was wrong with him, and I explained he had ALZ, thats what all the tests were for. He kept saying, really, why didn't you tell me, that is so serious and awful - on & on. He promptly forgot all about it. I never tried to explain it again to him. This was a year after the neuropsych test where the Dr. kept reiterating how profound the memory loss was. We left the office and he said "well that was a waste of time and money". He wanted me to not tell anyone, which I complied with for a while with the exception of a few close friends. I wasn't supposed to tell his brother either. I respected what I thought was his privacy for as long as possible. When I finally did share, some had already recognized problems and others were in total denial themselves and couldn't believe it was true. For a long time, if someone just spoke to him for 15 min, everything seemed fine. So I was viewed as crazy by a few of his friends. We too had many friends vanish from our lives. To this day, he still has to be given his "vitamins" and refuses "medication", as he isn't "sick". Google anosognosia. One of our doctors clued me to it.
My DH was one who has never realized his impairment. My explanation for any meds I gave him was that they were "for your heart" as he was very concerned that he might develop heart problems. No matter what pill or what time of day it was given, everything was "for your heart". Never had problems with him taking his meds. I did, however, have problems with him wanting to run away to California to marry the girls on the covers of magazines, catalogs, ads in the newspaper. Sheesh! Once when I got home from work, his suitcase and hat was sitting by the door (empty). He told me he was waiting for his plane ticket to California and that he was going to see this woman. I said that I hadn't seen any tickets come in the mail and we should probably wait to see if they came tomorrow. Then I promptly started hiding all magazines & catalogs with women on the cover!