Thank you Joan for today's blog. It was very timely for me, and reinforced what I keep telling myself, but sometimes forget to listen. Worrying about whether others understand or can accept what is happening to our loved ones and what we as caregivers are going through, is futile, and does take time away from what we truly need to be concerned with---our life with our spouses.
Experience is indeed the best teacher, but it will not teach you everything. For years, I had helped my dw take care of her mom with Ad, and thought that I understood the disease. When my dw developed symptoms, I never suspected that it was the early stages. I attributed it to stress of taking care of her mom, obsessive compulsive disorder, “menopause”, and a variety of other causes. Our dr. told us that she was too young to get AD. I really thought I understood the disease, but now that I am in the driver’s seat, with lots of experience behind me, I realize that I still do not understand the complications of the disease. It affects every single aspect of your live, your family, friends, and loved ones, and presents so many complications that were never anticipated. Recently, I was discussing AD with a nurse, and she was trying to convince me that there are 2 types of AD.. the good kind and the bad kind….DUH….Is there such a thing as “good cancer and bad cancer? Good heart attacks and bad heart attacks? What part of AD is good???? I do envy those who have a pleasant spouse, but that is by no means “good” AD. Experience is very helpful, but each one is unique. There are so many twists and turns that you cannot rely only on experience. Just when you think that experience will help you, it no longer works. Circumstances change and you have a new experience. I guess my advice is not to totally rely on experience, but to use your creativity and judgment. Try different approaches and change your approach as the disease changes. Caregiving is trial and error, mostly lots of trials, and even more errors. Do not rely only on experience...rely more on guesswork...experienced guessing......
Sorry, but someone nice w/AD is not 'good.' They are not 'there' they don't understand what you say, where they are, who is who--how can that be good, just because they aren't nasty.
Personally, having cared for DH for 10 yrs, I learned much more about AD after it was over. I sometimes wish I could do it over again w/the knowledge I have, but I'm afraid the emotions would still get in the way, the human part of me would still be caught off-guard on occasion. I would be nicer to him, but I didn't know then what I do now. But love, protect and care for him--yes, I always did. I can look at things objectively now because I'm no longer in the throes of it and I can tell others how I think they should feel, what to say or not say--and I know it will often fall on deaf ears--we want so much for things to be the way we want them to be--we'll try anything to make it work. Caregivers say to themselves--her advice may be good for others, but I know I can work this out, I'm not like her, DH isnt like her DH, I know what my spouse really like, all I have to do is ------. Over and over I hear that many of you are saying and doing the same things I did and I want to say, 'Don't do it that way, say it like this, or ignore it,' and I know it won't be because we have to keep trying, and in the end, that's the way it should be, must be, we have to maintain hope, we have to try, we'd never forgive outselves if we didn't keep trying.
But Joan is right about others. Even doctors who have not had this personal experience will never understand us, that's why so many of us are dismissive of them, they truly do not understand. Before DH got sick, I worked w/a woman whose FIL had AD and I never understood, never, altho she told me the same things I would later tell others and that we tell each other--but until it happened to me--I really did not understand, not because I'm a bad person, indifferent or uncaring--I just didn't know--there's a whole world of things I don't know. And I think I could have read all the AD books on Amazon, and I still woundn't have understood the magnitude of it. So I cut some slack for those who don't know--like me, they just don't know.
Bettyhere: very well put...what is the old saying about not knowing what a person is going through, unless you have walked in his shoes..... I think you have valuable expereince, and should share what you know, and feel...I know it will help someone...hugs; Rosalie
Lately I've been thinking so much about my FIL, who was caregiver to his wife for many years, while she ran the complete AD course. How little we understood and how little we helped. How critical we were of his efforts. To us she was always all smiles and happy talk. To him she was often mean and angry. We thought it was because of the way he treated her. I'm sure we never offered him respite. On the occasions when we did take care of her, when he had to go somewhere, we thought it was such a hard thing to do; she was only interested in looking at photographs for half an hour or so, and then would go stand at the front door, trying to get back to her home and husband. We never thought much about how hard it must have been for HIM. There was never a dx. A psychiatrist husband of a friend of mine wrote prescriptions for her. I haven't a clue what medication it was. Now I would like to know, but they have all died. My only comfort is that we did visit them often, and they were often at our house -- we live close by so they could pop in for a few minutes. I hope that helped. But I wish I had taken the trouble to read more, find out more, understand more, help more.