In the "When your spouse behaves like a child" discussion, Starling said:
"No, no one knows how to stop this. I think we might be the first generation of caregivers who know what is coming. Considering just how upset most of the newbies who come here and to the other boards I've visited are when they arrive, it wouldn't be better not to know. We all seem to calm down quite a bit once we know what is coming. And then again, we all seem to grieve over what will come in 6 months or a year or 5 years. It really is a two edged sword."
This is something I've been thinking about a lot. My husband has been diagnosed with MCI, but I think that when he is retested, probably in January, they will find that it is now AD. I was very upset when the diagnosis was first made. I began reading everything I could find including this incredible site. Several people, including a psychologist, told me that I should quit reading, that I was making myself more upset, and that I should just take things as they come. That didn't make sense to me. I think I handle things better when I have an idea what might be coming. Sometimes, though, I wonder if I'm looking for and seeing symptoms that aren't there.
What do you think? What did you do when your spouse was first diagnosed? Was it helpful?
Janet-I knew so little about the disease that I thought we were the only ones going through so much hell. Even well meaning professionals said they couldn't understand the violent behavior (my husband has frontal lobe dementia) was showing. Just knowing you are not alone will help preserve your sanity.
My personal opinion is that it is better to know what to expect. Look at how upset, hysterical, guilty, confused, and full of pain I was when I first saw what AD was doing to my marriage. As was most everyone who visits this site. When people come here, they realize - oh, it's not just me; it's not just us; it's happening to everyone. It's part of the disease. And that is whether it is directily related to spousal issues or related to other AD issues, such as obsessiveness, wandering, tantrums.
I, for one, cannot imagine "taking things as they come" without the knowledge to back it up. That said, there does come a time when you get inundated with too much information. Once you know the basics of what to expect, and get support from face to face or online groups like this, then you can decide how much more to read. For instance, I don't read about Hospice - too far away for me now - I need to deal with what I've got.
Janet, I already knew a lot about AD when my husband was diagnosed, because my mother died of AD. And she developed pretty much every symptom that is possible.
I can tell you, though, that when my first husband was dying of cancer, the doctor offered to tell us all the things that MIGHT happen to him. We discussed it, and decided we did not want to be told the possibilities, because we would then waste time and energy worrying about possibilities. The actualities turned out to be bad enough ... and yet I know now that there were many things that could have happened that would have been even worse.
I do not regret having made that choice.
Of course, I did a lot of reading after my second husband was diagnosed with AD, because I'd seen what happened to my mother, and I wanted to be prepared to care for my husband, using the latest ideas. Plus it's a different matter altogether when one is the primary caregiver. (My father cared for my mother, for the most part.) What I found most helpful, when it came to keeping my sanity, was the materials that emphasized that each patient is different, and many will not ever develop the worst symptoms.
The problem that I see is that very few materials emphasize this. I think hope is extremely important -- not just for me, but for my husband. And by that, I mean that I think he does better if I manage to maintain an even keel. He is very sensitive to my moods, tone of voice, body language ... he is happier and healthier if I manage to convince him that things will be all right.
Regarding Joan's comment about hospice ... I looked into that, not to prepare for needing it, but because we were developing our Advance Healthcare Directives. California has a boilerplate format you can use to prepare these yourself, without an attorney, although we had one because he was doing a lot of other paperwork for us as part of the package.
You are allowed to tailor the form, to add details about what you do and don't want. Well, how did I know what to put in there, without knowing what one might or might not want, and what each treatment meant in terms of actually helping the patient.
I found the hospice materials, especially "Hard Choices for Loving People" to be excellent in helping decide what I wanted in my AHD.
I can handle most anything if I understand what is happening and/or know what to expect. I would rather know and it not happen and say "great dodged that one" then not to know what to expect and have a big pile of poop some morning in the middle of my living room. I hope that never happens, but you can bet I won't scream and yell if it does, I will be prepared with "depends" and all the other things I have learned on this wonderful site. Great for those that can really live for today and not fear tomorrow. I am not one of those people.
Having said that "yes" sometimes I think reading everything makes me depressed. On those days I just read what I think won't be too depressing. Then someone will come up with a topic that makes me laugh my fool head off. I wouldn't miss this site daily for all the tea in China.
Personally I needed to know as much as I could. I haven't studied up on Hospice yet because it is way too soon for that, but I learned enough to know that you call Hospice in early, and I've even discovered that my favorite hospital, not only does visiting nurses, but hospice as well. Since my husband's neurologist is also part of this hospital's medical groups, that is good to know.
But at that point I stopped studying up. Just too early.
I've also seen a great number of people both here and elsewhere show up on their first post nearly in hysterics, and calm down quickly afterwards just because they were no longer alone, and because someone else knew and understood what they were living through. And I've managed to stave off the hysteria just by knowing what is going on.
Before the online world developed you were lucky if you had a book to turn to. And as good as it was in its time, the 36-HOUR DAY really isn't all that useful.
I have seen too many people who should know better offer up the 36 Hour as the ultimate cure-all. That was the first bit of help offered by our psychiatrist. I think he was shocked when I told him I hated the book. I don't think the writers ever walked the walk.
I definately want to know what to prepare for. even if we dont develop all the specific-stage symptoms I think its alot of comfort in a way to know what to expect and not have 'surprises'. I also like the way we can use the detailed stages to compare where we are in relation to those. just knowing friends are out there sharing what they are experiencing on a daily basis, is good therapy and saves my sanity as well. having a reasonable idea what can happen along the way makes it easier to deal with if/when it does happen. divvi
It definitely IS better to know what to expect. Like Starling said about being upset when we come here and then calming down is true. When I first came here, I knew nothing about AD but had heard about some of the horrible stuff that can happen. After being here for a week or two, I did calm down. Somebody is always willing to share an answer to any problem that comes up.....except how to cure AD.
I appreciate all your answers. I trust all of you much more that the other people I've been talking to. I have calmed down a lot since my husband was first diagnosed. I read a lot at first, but now this site is all I read unless someone here suggests another site. I am like JudithKB in that "I can handle most anything if I understand what is happening and/or know what to expect." So, I think it works better for me to know what might be coming.
I also think it helps my husband. I have not always been the most patient person. I've learned from all of you to realize that when he forgets or gets angry it is the disease, not him. That's really helped me to stay calm and not react. Yesterday he told me he needs help remembering to take his medicine - something completely new. I don't think he would have told me if I was still being impatient with him. He would have tried to hide that he was forgetting.
Thanks again. I knew that what I was doing was probably best for me, but all this is so new to me that I needed confirmation.
I was a total basket case when my DH was diagnosed, I had no clue at what to expect. I found the other site, Joang didn't have her site yet. And I learned what it was all about. Then our Joang started her website and I'm here ever since. I have learned so much and I am a better caregiver because of it.
Janet, as far as another site goes, you might want to look at www.bigtreemurphy.com. There aren't any message boards, it's just the wisdom and experience of one woman caring for her AD spouse. Starling reminded us about it recently, and I've spent some more time there. It is really great. MUCH better than The 36-Hour Day!!!
A true mystery to me is how some people go through life, handling everything as it comes, with no preparation for the vents that will follow. I could never do that. Because of my own disability, I have always had to plan ahead...is it accessible, where are the johns, ... When my hubby had a mental breakdown and became suicidal, we saw his Psychiatrist, picked up a prescription, and went home with instructions to comew back in 2 weeks, but call iof there were problems. I got 4 hrs. sleep in the next 2 days, and realized I had to pull myself together and come up with some kind of plan to handle the worst, because if I can handle that, I'll be able to handle anyhting less traumatic. When we went back in 2 weeks, I reported how well things had AND HAD NOT
(hate it when I hit stray keys). AND HAD NOT gone. Dr. asked why I hadn't called. Who knew the med. wasn't the right one for him? Not me!
When I was asked for his "Stroke History" and answered, "What stroke history?" I knew I had some researching to do. Probably we won't face everything that could happen, but I have good information and can already formulate tenative plans, based on the fact that if certain things do manifest, I will not be able to take care of him--not a case of don't want to--a case of can not do. I have already promised him I will arrange it for him to be at home as long as possible, but have told him if certain things happen, I won't be able to do that, but he will not be shipped off and forgotten.
My DH was diagnosed with MCI 2 years ago. 15 mos later he was diagnosed with moderate to severe AD. I think he's in stage 5 maybe early 6. I had no idea with MCI was. All I know is that DH had been called for jury duty. Te neuro signed a letter for me to send to the court that he had MCI and would not be getting better. It was permanent. He prescribed no medicine and wanted to see him again in one year. AT the end of the year his MME test was the same but I knew he was worse. However, objectively speaking, there was no change. Three months later, he was not at all in good shape. He was rechecked with another MME and he had deteriorated that quickly. I was at a complete loss as to what to expect, when, and all that good stuff.
you have to be prepared. Otherwise how would you be able to handle what comes along. I think it just makes life easier if you can be prepared, more efficient/effective caregiver. Works for me--sometimes. smile