I only wrote half a blog this weekend due to a bad reaction to pain medication. So I am giving you an opportunity to write what you think the second half should or would be when I can think straight and write again. The question is - EARLY STAGES ONLY - THIS DOES NOT APPLY TO LATER STAGES - Do you agree with all of the "nevers"? IN THE EARLY STAGES, when there is still some meaningful conversation, discussion, and opportunity to socialize, are there any you disagree with and why?
Although reasoning is not something I can do with my wife at all times now, when trying to convince her not to drive a year ago I think reasoning helped. We talked often about how the time to stop driving is before an accident, not after; how even the slightest possibility of her AD impacting upon her driving while our grandkids were in the back seat was too horrible to contemplate. Although she still felt she could and should drive, I think reasoning with her helped ... despite the shouting and crying and more shouting as we had those discussions/arguments regularly for a few months until SHE decided one day I was right ...she shouldn't drive anymore. So, I would disagree with that 'NEVER' ... reasoning can work, at least until your spouse is no longer able to reason at all.
I could accept those "commandments" easier if they didn't include the word NEVER. Makes me feel like I'm a failure for any of the times I've argued or reasoned etc rather than diverting or agreeing etc. Might be better worded by saying: Instead of . . . . , try . . . . . Then it wouldn't come across as such absolutes.
My DH hasn't been diagnosed yet . . . likely early stages of FTD. I have slowly come to the realization that using techniques in the second column is usually better than first column responses. BUT at the same time, because I use more of the second column responses, my hubby isn't facing the fact that something is the matter. So sometimes I do try to reason or argue or say I told you already . . . otherwise he feels all is well and nothing is the matter. Which doesn't help when the family doctor tries to bring up the possibility of some cognitive changes----hubby is sure all is just quite fine.
I also try to reserve first column responses for when it really matters or is really needed. Recent case in point: we had an outing planned with another couple. Hubby was actually eager and looking forward to our time with them. Then a couple of other things came up and I suggested it might be better to postpone to following week. No way----my husband wanted to go ahead even though the extra circumstances were making it hard to organize details. Would have been much simpler to switch dates. So I gave in (second column responses) rather than rock the boat too much. THEN evening before we were to go when I made reference to the plans, he made a comment and he thought all that was planned was one activity that would only take a short while. He was totally oblivious (forgotten) the other things this couple wanted to do. At that point, I resorted to some first column responses and laid it out for him. Otherwise I knew (based on past experience) that he'd focus ONLY on the one activity and be totally insensitive to what the others had hoped to do. (I also quietly mentioned to the other couple that DH hadn't realized that it was a full day outing so they'd hopefully be understanding of our need to cut back on plans).
If I'd followed the 10 commandments as laid out, I shouldn't have spelled out any expectations to my DH. And I had to repeat things a few times (quietly) because all he wanted to do was the one activity that was firmly fixed in his mind. The outing went okay but certainly wasn't what I'd anticipated and we did have to cut back on plans. Had I realized sooner, I should have insisted on switching the dates.
rachelle, I can relate to what you are saying. My problem is that even though my DH has been DX (4 yrs ago) with early dementia I still haven't fully accepted it. When he has those very "normal" thoughts & actions I wonder," Hmmm, is it really that bad?" But then he reverts back to AZ actions & I realize that it IS that bad.
I have alot of feelings about these commandments. I believe that they are all good if we were to replace never with "try not to". Yes, we are caregivers, but we are also husbands, wives and partners. We do not get to put on a work persona and then take it off 8 or ten hours later. We have to try to blend the care giving with the spouse/partner relationship. I took 'never' out of my vocabulary long ago. That way, when I do something stupid like get mad at my husband for putting the frozen vegies in the fridge for the umpeenth time...I can forgive myself. I don't mean to "break the commandments" but I'm human and every little loss I see in my husband makes me sad all over again and miss him more. So sometimes, as I have for our 35 years together, I get mad, or say something I regret, but I also love him unconditionally will care for him in the best way I can. (besides, I have learned that vegies refreeze very well and ice cream has a different shape and texture when refrozen but is still edible :-)) The people on this board are the most caring, loving, nurturing people I have had the honor to 'meet' and I have gotten excellent advice on how to deal with the difficult emotions of caregiving from reading here. The commandments are another tool but....never say never.
I am back from my Tramadol disaster and feeling better. I invite you to log onto the home page - www.thealzheimerspouse.com- and read the Monday part of the weekend blog. It disucsses my feelings on why, in the early stages, we should NOT follow those rules. I welcome your differing comments and opinions.
Joan, I remember, was it 2 years ago telling you that notebooks and calendars no longer worked with my husband when they were still working well with yours. And I've told others since then that there is a time in the early stages when notebooks and calendars WILL work.
That taught me something. There are things we need to do in the early stages that do not work in the later stages, but, as you said, those things ought to be tried for as long as they will work.
I'm also thinking that EVERY early stage patient ought to be seeing a cognitive therapist. I'm convinced that if my husband had seen Denise (his therapist) a year or two earlier than he had, that he would have had a much easier time of it. In fact one thing she taught him, to write out the date from the newspaper to a notebook, every day, had him still able to sign his name much later than anyone would have expected him to do that. I think it kept my able to read at least short things a lot longer too. But normally we get told that therapy will not work on dementia patients. I'm not so sure about that.
Starling-- I think you're on to something here. The skills they use seem to last longer, so if encouraged maybe that'd be smart. I don't believe therapy to rebuild/regain lost skills will work--probably create more stress, but just promoting the use of the skills they have for as long as possible can allow them to still be participants in their daily lives. This kind of approach has worked some for my DH. The skills will go, but as long as they have them encourage them to use them.
Thanks for the blog. After reading that list I felt like a failure. Spousal caregiving for dementia is like no other. I cared for my MIL early stage and I probably used most techniques on that list without even realizing I was. That was 15 years ago. We recieved our diagnosis last January and there is no way I would go by that list yet! It would seem like giving up. Thank you Joan for providing this safe place for us and all who contribute to help us find our way.
You find a cognitive therapist through either your family doctor or the neurologist. It requires a prescription. My husband was actually diagnosed by a cognitive therapist. I asked for an "assessment" and that was the route that VERY experienced family doctor chose to go. You can not fool a cognitive therapist. Basically they are speech therapists who have extra training to deal with stroke victims and they can tell the difference.
When we had the diagnosis I chose to stop taking Joe to her. It was a mistake. He should have kept going to that and also to the small support group that they had for the patients.
I would be shocked if even very rural areas didn't have cognitive therapists because they work with stroke victims. And therapy for stroke victims has become so common that it exists everywhere. In a very rural area she might have to come in one or two days a week from some place with a larger population. She might be attached to a hospital or a rehab hospital or nursing home that does a lot of rehab. My husband's second experience with a cognitive therapist was at his nursing home which has a whole floor for real rehab. The first experience was at the world class rehab hospital that does all kinds of in-patient and out-patient rehab.