As more people are being diagnosed with AD at earlier stages, doctors are looking to them for a realistic perspective on what it is like to have AD. There is an interesting article on the subject at http://www.westender.com.au/stories.php?s_id=713
Sorry I wasn't able to do it the easy way and put in the link, but either links don't work on this forum, or I don't know what I am doing - probably the better explanation.
As many of you know, I have been trying to get Sid's perspective on having AD, but he is not particularly articulate about it. So far, all he says is, "It sucks, and it's frustrating." He does, however, feel as hurt as I do as to what the disease has done to our relationship.
When I return home, one of my projects is going to be to try to put together a blog on your spouses' perspectives of the disease (those who are able to express it).
One of the women in my support group says that we'll never be able to "accept" or "adjust" until we are able to put ourselves in the AD patient's shoes.
Have you discussed this with your spouses? If so, does their perspective help you with your understanding and patience? joang
Bill never said more than "I don't know why I can't think of what I want to say". I don't think he ever realized what was going on even as much as I tried to tell him all I knew. His mother had AD and I don't think any of the kids really accepted that was what she had. Even now in the late stage, Bill will say the same thing. The other night he almost had me crying when he was having such a rough time trying to remember something. He said "Maybe if I had a book, I could remember". He meant a picture. I know he still gets frustrated when he is unable to say what he wants to say. He forgets words and will comment on "why can't I remember that".
We openly talk about how it has affected him. This week I have encouraged him to start a journal on how this has affected our lives. I was very intresting for me to to understand from his vantage point. If you want Joang I could get him to write something for this board.
I am involved in a Memory Walk in our area. This week they asked me to tell our story to the volunteers. DH came with me and after I spoke he talked about how he is coping with the changes in his life. Before the talk one of the volunteers sat and ate with us. See asked us if we knew someone with AD. My husband spoke up and told her he had been diagnosed this past year. There was a shocked look on her face- I don't think she expected him to be candid. I have been asked to speak to a large caregivers support group in February and will be bringing my husband with me as well.
Yes, definitely, I would love to hear your husband's perspective. I will keep your name and anyone else's who is interested, in my file for this topic. When I get home, I will work on this project. E-mail me what he writes, and I'll keep it in the file until I'm ready with the blog. Thank you.
PLEASE BE PATIENT WITH ME Remember, I am the helpless victim of an organic brain disease which is out of my control.
TALK TO ME Even though I can not always answer you. I can hear your voice and sometimes comprehend your words.
BE KIND TO ME For each day of my life is a long and desperate struggle. Your kindness may be the most special and important event of my day.
CONSIDER MY FEELINGS For they are still very much alive within me.
TREAT ME WITH DIGNITY AND RESPECT As I would have gladly treated you if you had been in this bed.
REMEMBER MY PAST For I was once a healthy, vibrant person full of life, love and laughter with abilities and intelligence.
REMEMBER MY PRESENT I am a fearful person, loving husband, wife, father, mother grandmother, grandfather, aunt, uncle or a dear friend who misses my family and home very much.
REMEMBER MY FUTURE Though it may seem bleak to you, I am always filled with hope for tomorrow.
PRAY FOR ME For I am a person who lingers in the mists that drift between time and eternity. Your presence may do more for me than any other outreach of compassion you could extend to me.
LOVE ME And the gifts of love you give will be a blessing from which to fill both our lives with light forever.
"…Love bears all things, believes all things, hopes all things, endures all things. Love never ends." 1st Corinthians 13
What works for one Alzheimer's patient is no guarantee that it will work for another.
Practice patience, backing off, being embarrassed, and keeping quiet.
Forget logic, reasoning, and fighting back.
Learn to lie to smooth things over for both you and your loved one. Your nose won't grow longer, you won't be punished. You don't have to explain facts like, "Your mother died long ago." You can say, "She's at the market. We'll see her tomorrow." Lying to an Alzheimer's patient is usually a kindness.
Don't ask questions like, "Do you want your breakfast now?" Instead, announce, "Breakfast is ready." Answering questions confuses Alzheimer's patients.
Understand that 'no' can mean 'yes', 'you' can mean 'me', 'he' can mean 'her'.
Learn to agree no matter how outrageous the situation may be, stay flexible.
Apologize for whatever upsets your loved one, especially when it’s not your fault.
Remember to take care of yourself, don't strain; keep your back strong.
Don't be a martyr--it's highly overrated--besides, it can kill you. Take all the help you can get.
Choose your battles, don't sweat the small stuff, and keep focused.
Knock off the guilt, it impedes your ability to function, and none of it is your fault. No one has total control all the time. Even Superman gets laid low by kryptonite.
Keep phone numbers handy for local police, ambulance and the fire department. If you phone 9-1-1, be sure it's for a valid emergency.
Find and join a support group. Go to on-line message boards and chat rooms.
Remember that a vow, promise or wish to care for someone doesn't mean that you have to do it all alone all the time in your own home. Sometimes professional care is best for everyone and it still fulfills your vows.
Develop a daily routine for your loved one, and stick to it sequentially as much as possible. Time means nothing to an Alzheimer's patient, so the sequencing is more important than the timing.
Prepare to set aside your own preferences, friends, and activities.
Be ready to rearrange your house and the schedules of all family members.
Get rid of all guns--no excuses.
When your loved one won't do what you've asked him to do, walk away for a few minutes, then come back and try again, and maybe even again, he needs time to process your words--and maybe he'll never get it.
Repeat instructions simply, slowly, over and over, word for word in the same tone. Changing the words changes the message and confuses him.
If your loved one gets angry, leave him alone, he's frustrated, unable to understand what's happening. Don't escalate his frustration by arguing with him.
Rather than saying 'I'm only trying to help you with this,' ask your loved one to help you, or say 'let's do this together.' He will feel better about himself.
What worked on Monday may not work on Tuesday.
There will be times when nothing will work.
When you do everything for him and he turns on you, it's hard not to take it personally.
You're human--when you make mistakes, lose your temper, and have bad thoughts--be grateful that you're normal.
Cry--it cleanses your system, releases tension, and you've earned it.
Laugh--really, it's OK--sometimes things are just so darn funny.
Caregivers need a long time to understand and learn these things. Don't despair; no one ever gets everything right all the time. It takes practice, experimenting, trial and error, incredible patience, and not being hard on yourself. The disease teaches you as you go along.
"There are only four kinds of people in this world: Those who are caregivers, Those who were caregivers, Those who will be caregivers, And those who will need the help of a caregiver." Former First Lady Rosalynn Carter
That was great, Bill - Thank you. When I get home, I am going to add more topics to the left of the website. I think one will be about caregivers, and that list you shared with us will definitely go in there.
Thanks DickS and Joang for the kind words. Truth is I didn’t author the two lists. The “TEN REQUESTS OF THE ALZHEIMER'S VICTIM” I have found at many sites with no attribution anywhere. For the 2nd list I simply added the site from which I copied it.
I would like to copy here a posting from the Canadian Alz. forum made by a person diagnosed with Alzheimer's. It may be too long for one post, but I'll try.
Contrary to popular expectations I am still a reasonably functioning 68 year old. I eat and sleep unaided, make arguably intelligent conversation, have most of my orifices unhampered by pads, bags and bibs and am still very efficient at seeing the ridiculous in the words and actions of others. (Never of myself.)
I like to believe I am free to pursue most activities though it disturbs me that even while I am composing this masterpiece Jean has builders erecting a high gate to completely secure this property we call home. Her protestations that its sole purpose is to keep the southerly gales from our front door are about as believable as my ability to memorize the latest joke sent e-mail by my Alzheimers field officer.
You need to understand that in July 2000 while inspecting the images of an MRI scan with Jean and my neurologist we were to hear this proclamation¦ "You have the brain of a 76 year old and it is aging rapidly!" Thus began my plunge into the fascinating world of those of us that have to continue their lives with a stigma of a dreaded and much maligned condition. I had vascular dementia and this diagnosis would forever change my life and the lives of all who I loved and cared for. The only upside I could see was that I had progressed from youngest to eldest of the family in thirty seconds.
I would be deceiving you to say that our world collapsed at the announcement of this condition. Yes, my professional life as a pharmacist ceased at once (and me only 62 years old) but the rather foolish expectations of a life of continuing leisure buoyed us both for some weeks. With the searching for knowledge about a condition completely unknown to us both came a fear of the future and an even greater fear of the unknown. Lost and stolen? Certainly. Status, position, confidence and understanding, all placed out of reach and out of sight. Gone. And no-one even suggested that it may be worth fossicking in the rubble to find the odd link that might open up a new life in which hope and satisfaction might walk again. Dementia was the complete antithesis of life and hope. So we were lead to believe.
The human spirit is a wonderful concept. The epic journeys of men like Scot and Shackleton, the unbelievable courage of Londoners during the blitz and the sparkle of life and hope in the eyes of a terminal cancer patient, all of these and so many more instances must declare that hope and life are never lost. And so it proved to be for Jean and me.
There is a wonderful poem by A.A. Milne in which Christopher Robin asks passers by what they were going to do "this fine day" only to receive the expected roles serious people always play. Then he asks a stray puppy. "'Where are you going to this fine day?' I said to the puppy as he went by. 'Up to the hills to romp and play.' 'I'll come with you puppy,' said I.'"
If a puppy had the sense to stray up into the hills and leave the sombre expected roles behind then so could Jean and I. And we have. Of course not every day is a day for romp and play. I would deserve for Jean never to open that new front gate if I even hinted that I don't long for those years pre 2000.
The sun only shines as it pleases and it pleases me greatly to be where I can cast off much of the baggage dementia asks me to bring along. Even for just a few hours. Loneliness, loss of esteem, fear of rapid downward progress, acceptance that this moment is the best there will ever be and it gets worse from now on. And I have found a strange and exciting fact. The more often I stray from the expected, the lighter my load becomes. Jean postulates that we can forge new pathways in our brains if only we try hard enough and expect to succeed. One way to do this perhaps is to consciously stray from the known way into areas as before unknown.
My education was centred on the sciences and language took a very back seat. Wanting to express thoughts and de-mystify this condition has forged new skills and given me a sense of achievement. It isn't getting easier but I can begin to write with a confidence I have never had before even if makes little rhyme or reason to others.
What am I trying to communicate?
If we passively shut up shop in the early stages of our disease and just concentrate on what a horrible card fate has dealt us then we deserve to be miserable and should be ashamed of making the lives of those who love us so stressful. Instead, look for those opportunities to stray from the beaten path. Leave your dark rooms and open your hearts if you have trouble opening your minds. Hard at first I must admit but easier the harder you try.
I took a phone call yesterday afternoon. A young lady in a car sales firm asked if Jean and I would care to go to a function at 6 p.m. that night. Yes! We got into all our finery and turned up as invited. No function, no guests, nothing. The problem? I had the message wrong as usual. Fifteen minutes later we were dining together in a pleasant restaurant and thoroughly enjoying ourselves. Off the old pathways, away from the expected roles and we were having a ball.
I would not be so conceited as to put myself up as an example to many. But I can tell you that when the sun does shine I endeavour to make each spark that real that I can hang on for ever. And 'for ever' is as long as you can hold on for.
What is lost or stolen is lost and stolen. What you are left with is just that. Grasp it with all your heart and have another 'Day in the life of YOU!'
Lori - that was just great. I enjoyed reading it so much. Thanks for posting it here. Brian's wife should find us and give us some insights of their life together.
Imhor- This was posted three years ago. The forum that this was posted on in a very low-traffic forum. He signed on as "Guest" and as far as I can determine, this was his only post.
Do you want to know how it feels. My Daughter, SIL and kids came up after church today. While I was making lunch, I left my DH in the living room with SIL, who btw, could talk the leg off a chair. Dick (DH) came into the kitchen and begged me, Don't leave me alone, I don't know what to say, I can't talk, Let me stay here with you. Daughter then came into kitchen and took Dad to the computer to show him some new photos of kids and vacations and keep him occupied, but he was afraid to be without me. Afraid he'd be embarrassed because he didn't know what to say. Think what awful lonliness that describes. It breaks my heart.
My hb refuses to talk about what is going on. Ever since going on the prozac and galantamine he has become happy, and touchy touchy. He massages my shoulders, scratches my batch and tries to play around like a teenager. I said something to him about it - that I am not use to it - and he said he could go off the medications. I repeated that he has not been like this for years so I am not use to it. I was hoping he would say more but didn't. That didn't surprise cause he never shares much of his feelings.
He was interesting to read postings from the spouse with AD. Thank you
Charlotte, the Alz Assoc boards have discussion forums for people with AD, as well as for their caregivers. If you go here:
http://alzheimers.infopop.cc/eve
you'll see a list of the different forums. Most of the people who have AD themselves post under the first two, "I have Alzheimer's" and "Alzheimer's under age 65."
Take a look. Some of the members have had AD for quite a few years and are still doing quite well ... it is surprising how eloquent they are ... Snowylynne for example, and Lisa 428 and younghope1. (Lisa is also caring for her AD mother.) Alan in Colorado is pretty new to the forum, but has a lot to say.
I see no comments about spouses that think everything is fine even after being told by neurologist that Alzheimers is now a fact of life for them,mine asked me last night what my name was? In a differant world but refuse to believe anything is wrong.
ol don, it isn't that they refuse to believe anything is wrong ... they genuinely cannot tell. Somewhere in my files, I actually have a reference that talks about the area of the brain that is damaged when this happens. But anyway, Joan has a link to a good article on this symptom somewhere, which is called "anosognosia". The link is:
I have often wondered ... those who are able to talk about what goes on in their minds are so eloquent. And yet, if they don't have anosognosia, then is their experience even remotely similar to that of patients who do? Can I really use their insight to understand my husband, or you to understand your wife?
Art would never go there - he doesn't use the computer. I tried to get him to play games online and he won't even attempt. I will go check it out though for me.
ol don, Well that's exactly where it's been from day one for my dh. And as Sunshyne said I don't think it's because the refuse to believe ( though it sure seems like it!) its really the fact that they have not a clue that anything is going on. I have asked Dh so many times what he's thinking, if he feels different, etc. Always answered with a no. He has said it's frustrating not being able to speak the word he wants to say, but other than that he thinks hes completely fine. Say's so all the time. It makes me crazy some days, but I have to just remember he can't remember. Rk
I've been thinking about this topic today and it occurs to me that my DH lives in the moment and in that place he is fairly content. He never talks about his condition except to say he knows his memory is bad, but "it doesn't matter"....he doesn't care. There is no past and, of course, no future. It is difficult for me to stay in that "in the moment" space with him sometimes but things seem to run more smoothly when I do. My life that involves the past and the future is no longer shared and I just can't dwell on that, it makes me too unhappy.