Whenever we go out in public, I always feel a need to offer an explaination as to why my husband bumps into people and doesn't acknowledge it because he doesn't even know he did it.....or he will stop at someone's table at a restaurant and just stand there looking at them all like he knows them and they just sort of stare back not knowing what to say or do. It's very difficult to walk next to him and lead him everywhere. He just can't seem to do that well. He does much better when he walks behind me to see me to follow me. The only problem with this is that I am always looking behind me to be sure he is right there........but sometimes I get a little ahead of him (unintentionally). If that happens, he can no longer see or find me even when we are talking five feet......God forbid further. He no longer can talk in sentences so he can't communicate with people as to why he is doing what he is doing. So, I am always saying behind his back......"sorry, he has Alzheimers". My sister......God bless her, my best friend......says she doesn't think there is a need for an explanation since it is obvious there is something wrong. I guess I just feel a need to defend his dignity. He is only 66 years old and had more pride than he should have. How do others handle this?
I don't apologize but I will just tell people Chuck has Alzheimer's. I don't do it behind his back because Chuck tells people himself. We want people to understand the disease better and hopefully empathize with those who have AD. Especially since Chuck is young, we want people to understand that when they read articles, see programs that these are about real people that they see everyday. That AD is not uncommon and it could be them.
For instance, we traveled last week and Chuck had a small knife on his key chain. So he ended up being searched. I explained the AD so the security person would not think I was interfering with her search. Although she still thought I was.
You can get little business size cards from the Alzheimer's Association. The front has the Alzheimer logo, and on the back it says something like - "My companion has Alzheimer's Disease. Please be patient." Or you can make up your own.
Lizbeth - we also had a problem with TSA. Sid had a money clip that had a tiny knife attached and folded into it. He started arguing with the guard, and I had to intervene. The guard was nice about it, but still confiscated the money clip.
Even though it is obvious that my DH is disabled, I am always telling people that he has Alzheimer's...I want them to see what the disease does to a person. It isn't just the memory; it affects all the motor skills and they should know.
I think how you handle it depends on what YOU are comfortable with.
If my husband were to inadvertently do something rude, such as bump into someone, then I think it's only polite to apologize for him since he can't apologize for himself.
Something like the stopping and staring, I'm more likely to focus on him -- give him a warm smile, say something like "Darling, our table is this way", take him by the arm and gently guide him away. People are usually pretty perceptive, they'll understand he has a problem even if they don't know what the problem might be. And they'll also understand that you love and respect him.
Some situations where you know there might be a problem (like airport security), then it's a very good idea to warn people in advance that you might need special assistance. For example, I've asked to be seated with my husband when the plane is full and there "aren't" any side-by-side seats left, and the airlines have fallen all over themselves to find good seats for us. He's still doing well enough he'd probably be okay sitting apart from me, but I'd just as soon not risk it.
Do any of your AD spouses in mid to late stage still know everybody? My DH diag. with Parkenism/AD/Vd and I would say he has all of the stage 5 and some of the 6. He still knows everybody. Most of you comment the spouse stops recognizing family. I am not convinced he has AD. He definetly has something, maybe it is Vascular Dementia. He seems to be doing the stages of AD. I am really confused about this.
Imohr, my husband still knows me, and my daughter and her family by name. We moved here AFTER he developed dementia, but well before he was diagnosed. He never learned people's names in the first place, but he knows all of the immediate neighbors by face if not by name. And if I use their names he still recognizes who I am talking about.
He has all of the stage 5 symptoms and some of the stage 6, so pretty much at the same level as your husband. My husband has an event driven Vascular Dementia as well. And he is doing the stages of AD. He is a little bit spread out since he is stronger physically than he is cognitively or with his speech, but he is doing the stages. It is my understanding that the FTD patients sometimes do not do the stages but Vascular Dementia patients mostly do. It is also my understanding that after death if an autopsy is done, most Vascular Dementia patients also have AD.
When they get further into stage 6 they will begin to lose names. I have experienced him not knowing who I am, but only once and he was sick with something at the time.
I have found myself explaining to people that my husband has Alzheimer's. I have found with doctors and dentists who do not see him often, I need to explain because , apparently, they do not read his record. Yesterday, we saw his neurologist, whom he has seen for 10 years. When the aide took us into the examining room, she wanted to know why he was there today. I told her that he has Alzheimer's. When she was about to test him, I asked if I should leave the room. She said It was up to me. I did leave, as seeing how he looks to me for the answers is too hard. We saw the doctor for all of 10 minutes. He seemed to directed a few questions to me, sent us for blood work to check B12 levels and vitamin D levels and that was it. DH scored 22 on the mini-mental test. Afterward DH said, "That was a nothing'". I agreed. It was a frustrating appointment. I had some concerns I wanted to discuss, but there was not an opportunity. Does this happen to anyone else?
Since there is not much a neurologist, or any other doctor, can do for AD other than "palliative care", I have found the best care to be by the family doctor (Internist or FP) as long as he/she is willing to discuss the disease. At least they take the time to answer questions, while specialists tend to be very narrow in their thinking. I took my wife to a neurologist for the diagnosis, but then, when he seemed uninterested, I dropped him and now deal primarily with her family doctor.
Note: I DON'T try to treat her myself, although I do make suggestions to the doctor.
I agree with you folks, although a lady Neuro we see once a year at University Hospital. Is open to questions and puts forth interest. She has the mini test run and last January he tested 18.
When Bob was in stage 4 or 5, I took him everywhere with me. In Grocery store I would have go in front of cart at checkout and help unload. I had to keep telling him to get more out or put in on counter. We got some funny looks from Cashier and bagger (if there was one). Bob just did as I asked and waited for further instructions sometimes. I never felt I had to explain. They probably thought "man! is he henpecked." I also took him to some meetings I attended. I told some of the attendees I knew, about him, but there was never a problem. He sat quietly. If someone spoke to him, he smiled and nodded. He is such a nice person. p.s. Bob has an EX neuro..
lmohr, I imagine that's one of those individual things. Some patients simply forget people. Others develop a form of visual agnosia in which they can no longer discriminate faces; but if you tell them who the person is, then they know the person. Sometimes they appear not to recognize a person because they are developing a form of aphasia and cannot come up with the right name or word for the relation the person has (son, friend, etc.) The time at which these symptoms develop can vary all over the scoreboard.
My husband is solid stage 5, traces of 6, knows me and many people, forgets others, especially those he has met more recently / known for a shorter period of time. He sometimes doesn't know a person one day, but does know the person three months later.
Some patients start referring to men as being women and vice versa. I've noticed my husband was doing this a lot for a while. Now he still does it sometimes, but usually will correct himself.
maryd, the neuro who originally diagnosed my husband made it very clear she had NO interest in working with AD patients. If you have a good PCP, then there is little need for a neuro once a definitive diagnosis has been made, unless, perhaps, serious behavioral symptoms crop up.
Even then, a highly qualified geriatrician may be better. The one I've found for my husband works with an AD research center, and works closely with an excellent neuro there. The neuro will be our "official" neuro, but it's much easier to get in to see the geriatrician, and let him consult with the neuro, rather than making an appointment with the neuro ourselves.
As far as explaining to people in the healthcare profession that he has AD, YES YES YES. And I NEVER leave him alone no matter what kind of appointment. They just never seem to understand that he has no insight into his problems. And they never seem to understand that he won't remember what they said to him.
I find myself explaining actions due to AD for DH as well. he has a habit of standing very close to a person eithr next to them or over them at their back if seated. it makes most nervous, so i try to steer him clear if he wanders to others. he doesnt do anything but smile but its still anxious for others to witness and myself. i usually say , sorry, my husband has AD. and almost everyone gives a sorrowful acknowledgement. you can hear them think, poor her, shes so much younger than him.." thats ok, while our lives were good it WAS good. :) i also remind our drs ALL the time i am his wife:) they seem to get a chuckle out of this...sigh....divvi
divvi, people get SO embarrassed when they assume my husband is my father and I tell them otherwise. And yes, many of the doctors and nurses that we see all the time forget. You'd think nobody else in the world was May-December...
My DH sounds a lot like LeeLyle's DH. He is a very sweet man. Very loving. I take him most every place with me--shopping, meetings, etc. He talks to strangers and I've noticed that most seem to 'get it' right away and he has a nice visit with them. I don't have to explain. Although, most people we know already are aware of his AD.
I warned the dentist that he had dementia when we did the last appointment. Mine was after him with the same people and I got a report that he had done well. I went into the room when he had his blood taken the last time we did that. Pretty soon they are going to remember us at that office because that is where we will do all testing from now on. Trying to get a fasting blood test at his doctor's office became impossible and required multiple tries. He gets up before me and makes his own breakfast.
I went public in the community about 6 or 7 months ago, and told people that it needed to be spread around, and it has been in a very nice way. I ended up getting offers of help as a result.
At the moment he looks "normal" with casual contact, so I don't have much explaining to do. But I know that is going to change.