I got something in my e-mail today from Caring . com which said: “Want to help destigmatize Alzheimer's disease and other forms of dementia? Be frank about dementia to children. Kids can be scared by what they don't know. If nobody explains why Grandma doesn't remember your name or Uncle Jack does silly things like throw good food in the trash, children are apt to blame themselves or want to avoid these once-beloved figures in their lives. Better to be straightforward. Use age-appropriate language: "Grandma's memory is broken" (for a younger child), or "Uncle Jack has a disease called Alzheimer's that changes his brain and causes him to forget things and get mixed up, but he's still the same person inside" (for a teen).”
That last phrase struck me as utterly ridiculous. “Still the same person inside?”
I would never suggest to my teenage son that his father was still the same person inside – he would be looking into group discounts at the assisted living center - thinking I, too, had lost my mind. He knows, and observes every day, that his father is not the same person – inside – outside – or anywhere in between.
Last night he asked me, “How is Dad able to do his job at work? I mean, does he have people checking what he does?”
Me: “Well, yes, he has a big support staff. And if he’s making errors, they will probably catch most of them. Why do you ask?”
Son: “Well, I’ve had maybe one normal conversation with Dad in the last 2 months. I can’t figure out how he could be making sense at work.”
Do any of you feel your spouse is still the same person inside?
I think this is an excellent discussion topic. I hope others agree and join in. It is a question I have asked myself many times. We are what is in our brains. Intelligence, decency, love, abilities, feelings - are all centered in our brains, not our hearts, as the poets have led us to believe. So when everything that is in our brain changes, are we the same person? My first answer would be no. But there are so many anecdotal reports, including those from Nancy Reagan, that at the end, there is spark of the old self that says "I love you" or shows clear recognition. So maybe, buried deep deep inside, the same person is there.
I only know, that for me, remembering who he used to be, and who he was when I fell in love with him, and how he was for the first 35 years of marriage, before Alzheimer's hijacked his brain, is the only thing that keeps me going.
I believe my DH is still inside. Of course there are changes--we are changed by dealing with this as the Caregivers. But I believe the core, or essence, is still there. The damage to the brain disconnects the self from the abilities. The ideas, memories--everything we store in our brain is there but the retrieval program is ruined. Some data may be lost, but not all. When a computer crashes, not everything is necessarily lost--it's in there to be retrieved if the right connections are made. The Dementias are such a horror because they entrap the victim in a slowly shrinking world as they destroy all the connections to the rest of the world. I thinkl I would qualify the statement that "He's still the same person inside" to something like, "The disease has hurt him a lot, but he's still the husband, father, brother...we love and who loves us."
I highly suggest you read the book "Still Alice". It's a fictional book about a women in her fifties (from her perspectve) who goes through the Alzheimer's journey. I have read it three times as it's helped me understand my husband better.
I believe my husband is "still" there. He has gone from the type A personality to someone more docile. There are times when the type A personality returns- like two weeks ago. We where at a red light coming out of our neighborhood when our daughter called just as the light turned green. I was slow to excel and the car behind me started honking the horn like crazy. My husband's type A returned giving the driver the finger. Imagine my suprise when the driver followed my car into the Publix shopping center blocking my car after I parked. At that point I was a little scared to get out of my car but I did. The other driver (who by the way had a toddler in the back seat) started yelling at me upset that hubby flipped him off. Thankfully the docile personality came back and my husband got out of the car waved nicely at the angry man and told him to have a nice day.
I don't think the essence of the man I loved and married was there any longer. The intellegent, caring, polite, well spoken and well thought of person was gone. In his place was a violent, mean, raging person who turned on his children and every one else. Surely this once dignified man in diapers and drooling was not the dear person I married. The monster got him.
I agree with bluedaze*.....my husband is no longer in his body...the intelligent, caring, loving, considerate man is gone...his spirit may be buried so deep that it can't get out. The eyes are blank. The man I married is no longer in that body. My husband was never the raging, angry person that so many here have been subjected to having to deal with. I will care for him because of the love we shared for over 45 years...these last four was a one-way street due to AD. And I tell him I love him every night when I tuck him in bed for the night. That love is for the man he was.
Oh, Mary, yes - the love is for the man who WAS. Very well said. And sometimes I miss him so much, I try to reach out and find him. But he's not there.
My husband is in the latter part of stage 6, and inside, he is still there. Or I should say, his emotions are still there. He still says please and thank you, expresses appreciation (at times) of me and the aides taking care of him; at other times, his old independent and even feisty side comes out. I cannot predict what will happen in the future, but for now, I'd say yes, he is the same person inside.
My wife is late stage 6. Sometimes she just sits with a blank stare. Then she will reach out, rub my arm, and say "You're wonderful". I can see that she is still in there.
I think my DH's personality is still inside though his outgoing self is diminished. He is still the gentleman he always was, always says thank you and still offers to help with " can I help you?".With his cardiac situation those things I wish he could help with I don't..heavy lifting or getting on a ladder and things like that. He is forgetful but he is not stupid. Just because they become forgetful does not mean that they took stupid pills for breakfast..I find he keys in to appointments or the news..he just forgets it 15 minutes later.. He always had a generous and gentle nature..slow to anger..that is a blessing!
I don't know if I agree with "still the same person inside", but I do think that there is a person in there and that person is often aware of what is around them. I would often look at my husband's eyes and there was a person there. Sometimes they would look blank but he would come and go. There was a description about the "evil fog of Alzheimer's" and that was how I thought about it. He was still in there but his connection to the world and ability to interact with it was slowly being destroyed by that fog.
The answer to this question hinges on how you define "person," and, in many cases, your feelings about the spiritual aspects of life and death.
I held the contention, for quite some time, that part of the spirit of the AD person must "move on" ahead of the rest, leaving a partially uninhabited body. More recently, and based on other things I've read, I'm not sure about that. Others have suggested that the trappings of the personality--the parts that were attractive to me, and understand me, etc--are not the "person" at all, and that that essential part is still stuck there until released by death. Or something.
Frankly, I'm not even sure where I stand of the spiritual questions of life and death, but it's something to think about.
He (mine) is, in many ways, the same "person." But he is not the same personality with the same broad range of interests, skills, gifts, and empathy.
I think DW is the same person at the core, but with such limited ability and confusion they are not the same person. If you define a person by what they are able to do. He is a carpenter, is he still, if he can not do it anymore? If you define a person by their mental capability. He is a genuis, is he still if he can not add or subtract? If you define a person by their personality, He has such a great sense of humor, does he sitll, if he can not remember the joke? If you define a person by their morals, He has such good morals, does he still he he is unable to comprehend the situation anymore?
G is absolutely nothing like the person he was. As Marilyn said, he still says please and thank you on occasion, but that's about the only remnant of civility left. I feel he is a total stranger to me and our family.
It scares me to think that my DH "is she still the same person inside." If so, then she is fight like heck to get out! How awful is that. My DW is stage 5/6.
My Dh's personality has changed a lot. I think he is still inside there but he is quickly disappearing. One example of this is that he told me that his feelings for me have changed and I asked him how and he didn't know but he knew that they had changed somehow. He treats me more like a person that takes care of him than a friend and soulmate. His sense of humor is changing too. So I think sooner or later he will not be in there anymore. Never can tell for sure.
More than a year ago, when my dh was maybe early stage 5, we went to visit a former employee who had a new baby. I had warned him by email about the "boss's" condition. The next day, the employee (who used to be Siem's favorite young advisor) emailed me that he had seen great change but that there was still enough of the "old Siem" left to relate to. This was intensely comforting to me. Recently he visited here with his two small children. This time there was no talk of "the old Siem", nor could there have been. Time and the disease have taken their toll. Knowing he will be placed soon, I am treasuring the time we have left together at home, knowing I will miss him. Lots of hugs and caresses and he seems to thrive on it and is pretty conented and cooperative. That much is left.
I promised to love him until death do us part, and I will, but my DH is not the same person. I wrote this blog entry one year ago:
I miss old Dan
Dan is not the same man he was two years ago.
Old Dan enjoyed playing board games with family and friends. New Dan hates board games.
Old Dan was gregarious. New Dan spends a lot of time staring into space.
Old Dan was engaging and opinionated. He enjoyed neighborhood gatherings, and was never shy about sharing (or should I say imposing) his political opinions. New Dan doesn’t like people; he is withdrawn, and anti-social.
Old Dan was humorous. New Dan often tells jokes in which only he can find the humor.
Old Dan rarely swore; he learned to watch his language when our children were young. New Dan often uses colorful language.
Old Dan had a temper, but he always controlled it in public, and usually controlled it at home. New Dan has had many public outbursts of anger with family members and with total strangers. At home, we walk around on eggshells wondering what will set him off next.
Old Dan was intelligent and quick. New Dan has a hard time understanding things and struggles to understand common sense concepts.
Old Dan was well groomed and well behaved. New Dan is often un-groomed and uncouth.
Old Dan minded his own business. New Dan is overly concerned about what other people are doing; he has became mildly paranoid.
Old Dan thrived on problem solving - a major component of his job. New Dan is overwhelmed by the slightest inconveniences.
Old Dan was competent and confident. New Dan checks with me on everything - thank God!
Old Dan was good natured. New Dan is cranky, cranky, cranky.
Old Dan was always on top of current events. He engaged in interesting conversations. New Dan says odd things. He says things that are socially awkward.
I miss old Dan.
Now, one year later I would add: Old Dan was financially astute and independently handled family finances. New Dan no longer understands the difference between a stock and a mutual fund. He cannot negotiate something as simple as the maturing of a CD. He cannot evaluate different investment alternatives, and now wants to base decisions on how much he likes the guy sitting across the desk.
Old Dan was a loving father who doted on his children. New Dan leaves his children feeling hated.
Old Dan was efficient, not afraid to ask for help. New Dan can spend hours and hours spinning his wheels trying to figure out why things are not making sense. He no longer knows to ask for help.
Old Dan was predictable. New Dan is unpredictable. He can fly off the handle with no warning and in public venues.
Old Dan was reserved. New Dan wears his emotions on his sleeve. Everyone knows it when he is not happy.
Old Dan was a public servant, contributing many hours to community service. New Dan cannot handle any responsibilities beyond his job, and I sense the job will go soon.
Old Dan could shrug off disappointments. New Dan obsesses about them.
Old Dan was honest and trustworthy. New Dan's words cannot be trusted.
I love my DH so much. Oh how I wish I could make this go away and have him back with us.
Before AD my DH was a type A, my way or the highway, senior manager type of guy. Then,after AD set in, he was much easier to get along with. He turned all responsibility for everything to me and enjoyed life. Suddenly, he wants to tell everyone (me) what to do. Our kids gave us a new TV for Christmas. The old one is sitting on the floor of our bedroom. He asks me over and over when they are going to move it, when. He wants to call all our kids and set it up. He no longer dials the phone or knows anyone's number. I had made arrangements for it to be moved and told him, but he would not accept that. He needs to set it up. I dialed my daughter's phone for him so he could leave a message. When she called him back he was very calm, no problem, nothing like he was with me. He seems to have moved into a new personality, similar to the old one that was difficult.
My DH is stage 6+. He is in a nursing home, wheelchair bound, can't feed or dress himself, can't speak coherently. Still, I like to think that he is in there somewhere, although he shows no indication that he knows me. When our young kids visit, he doesn't really respond. Sometimes, he'll start crying, however. Does he cry because he has a moment of recognition? I don't know. When he was well, he never cried, so I don't know if he's remembering/recognizing us when he cries, or if it's an aspect of the disease.
About a year ago, I took him to a specialist in Boston for another opinion on his condition. DH showed no indication that he knew where he was. He babbled constantly, but nothing that really made any sense. The doctor talked to me about DNR. I remember, that DH blurted out "shoot me". The doctor didn't say anything about it. I remember thinking that he does understand what's going on around him, even though he can't really respond in a meaningful way. But that was almost a year ago. Now, I'm not so sure.
I hate to think of him "trapped" in there, wanting to communicate, unable to, so I think it may be better for him if he's "not there". But I also hate to think that he has no memory of us, of our kids, their births, etc.
Lately, I've been visiting less. I feel bad about that, but when I feel like he's not there, I just can't see the point. If I knew he was there, and knew me, I would feel differently.
kelly I stopped visiting often when I was sure that my husband had no idea of who I was or even if I was there at all. I left in tears too many times. The maintenance man became my friend. He would often see me leave in tears and just come over to chat.
I firmly believe that a vital spark of my husband remained inside him. Many days, he looked and acted very out of if but out of the blue there would come a day that he would pat my arm or reach his hand out to me. We have 12 grandchildren and while I will admit that he didn't pay attention to many of them after he went into the nursing home, he did with the oldest one and the two of the youngest. The oldest is 25 and has lovely red hair. There are 10 year old twins, also with lovely red hair. He found red hair attractive and often told me he was going to trade me in on a red head. I told him that the only red heads he was allowed to pay attention was our granddaughters. When they were there, he followed there every where with his eyes.
I firmly believe my DH has some of the same personality traits. He has more good days than bad. I f he gets anxious I will try to give him Xanax, (he wont take it willingly). He is still in stage 4 or 5. I guess a lot depends on what stage they are in.
I still believe they essence that is "thm" is still there. It is of course ot exactly the same. Neither are we. I am not the 26 year old he married and he isa not the 31 year old I married. But he is the 35, 40, 50, 60, and now 68 year old I married, changed by time and circumstance--the same, but different, just as I am to him. Much like a shipping container takes a beating, being dropped, tossed, bounced, and squashed, his brain is being damaged and the connections demolished, but the contents are still in there, and it seems, sometimes, can let us know that.
I think that there's a bit of the spark inside, too. Maybe it's because his voice when he does speak, which isn't often and which is usually just echoing what's been said to him, sounds the same. THe same sweet comforting voice. But then when he gets to yelling because he's been moved from bed to commode, or otherwise being tended by the CNA, he doesn't sound like him at all. The only way to quiet him is to sing to him, or to puff into his face, which he loves me to do and which he does back. THAT isn't like his old self at all. He still has facial expressions, too. That helps me think there's a bit left.
I believe my DH still has a lot of himself left. He was dx'd in September 2007 and can still take care of himself and still has a sense of humour. His memory is just about non existent especially short term. Thanks to meds he doesn't hallucinate like he used to and the paranoia doesn't come up very often. His DX was AZ and he is now 82...I sometimes wonder how long he will stay the way he is now. Somehow, when we first got the diagnosis I expected a rapid decline and that really hasn't happened. I hope they weren't Famous Last Words. lol.