I invite you to log onto the home page - www.thealzheimerspouse.com - and read today's blog. I was out all morning, so I simply listed the tips at first. I then went back and added my commentary at the end.In order to see that part, you will need to refresh the page. Please post your opinions and comments here. Remember, all of these tips were compiled by men and women who have Alzheimer' s Disease or a related dementia, based upon their own experiences.
Joan, I feel like you do about "it is always the caregiver who has to change and adapt". Sometimes I don't feel like adapting and acting like nothing is a bother. Those who have had children...did they adapt to their child and give in to them? I never had any so maybe I don't know how to adapt and I am way too old to learn to do it every single day.
I agree, sometimes I don't feel like adapting but unfortunately that is what we end up doing. That is the only way to cope even a little bit. I remember before I knew that he had dementia thinking and getting angry at him and saying "Why is it that I am always the one making all the changes and you don't have to change anything, you just live your life and everyone around you has to like it or lump it? But here I sit and that is exactly what I am doing, the only difference is knowing that he is sick somehow makes me understand it better. It is still hard to cope with but knowing why he is the way he is somehow seems to help.
Jean, I don't think we adapt to our children in the same way we need to adapt to our AD spouses. We are responsible for helping our children learn compassion for others and learn the way we expect them to behave. So our job is not to adapt but to teach. Our spouses do not feel compassion and can no longer learn. We cannot teach them, so we cannot expect them to adapt to us. Either we are going to be constantly battling or we must adapt to them. Although it often makes me angry, i'd rather adapt than put up with DH's anger.
Fortunately my DH hasn't been angry since I don't know when! Before I knew anything about AD he would get angry at the drop of a hat. He threatened me once and I told him if he laid a finger on me I would call the police, He would go to jail and when he got out everything he owned would be GONE! Since he has been on the meds he hasn't gotten angry. I don't know if the Seroquel has finally kicked in but today has been great. Almost like he is "normal". If it would stay like today I can handle it. HAH!
A couple years before DH was dx"d with his Mental Illnes, I sought he help of amairtal counselor for what I thought were marital issues. He wouldn'tgo too. When I groused about always having to be the one to give in, change, etc. She pointed saomething out, I thought was profound. She explained that if I took the time to look at the poblem issues and how I was reacting I'd see the chain of my reactions triggering his next actions. Then she said, try responding differently and see what he does. She said that I'd likely see that how I changed my response (not reaction) would make him act differently. So, even if he woudn't go to counseling with me , the counseling did effect good changes. We, as caregivers have to be the ones to adapt, to change our responses, because our spouses can't. But, when we do, we do generally get better responses back. It's not easy to learn to do this, and do it consistantly. We will forget and react tripping the reactions we don't want. It happns.
I wish this list had been available a while ago. It sure would have saved me learning the hard way.
Before we got the DX for my DH, I would get really frustrated when he "wasn't listening" and I had to repeat things over and over. Seemed he was busy thinking of something else he would rather be doing...Now that I know what he has, and see the changes since that time, I do adapt to things. For instance, if he were to say, " I am out of diet pepsi, we need to get some more" and I say I'll do that tomorrow, he will come back with " Oh I'll do that for you, I'll go get it". So I stop what I am doing and go off for it otherwise I risk his trying to drive..and his driving might well be just fine but his sense of direction isn't. We were never in the habit of calling each other names or saying "how can you be so stupid" so that doesn't factor in. But I do say things, partly to have him feel normal, with I seem to recall.....rather than say do you remember. And when it comes to getting to appointments on time I start him out early with lots of reminders...I'll start the day before for some things as he will say first thing in the morning "do I have any appointments" or something of that nature. When getting ready for bed I'll say " Oh and tomorrow we have to be.....and I'll put out clean clothes...and with his meds...He will dawddle so I never make moring appointments for either of us if I can make later ones since he does procrastinate. And I don't hurry him with his medicines..just stay there until I see he has taken them; so often my day doesn't get started in a productive way until 1030.
Oh boy, I wish I was better at putting into words the thoughts that are floating around in my head. It took me one hour to comment and after pushing the sumit key it said..I did not sign in and lost it all. GRRRRR I will try it again. Please bare with me while I try to express my thoughts. Joan,,,you were not in a bad mood not in a selfish mode. What phrase that upset me the most on the list is....." If people don't accept me, that's THEIR problem". In my opinion this phrase is not true. No one has to accept bad actions from anyone! 'DUCK", what does that mean? Yes, it is an illness and we are not doing it on purpose...this is true. I not only have dementia but am also a caregiver...my life calling, to a son who is 38 and has memory and other difficulties and in the past to others who have needed assistance. My husband has been in denial of my dementia for 10 years while my son is trying to be my caregiver. We make humor of it and say......It is the blind leading the blind. Being a caregiver is both emotionaly and physically draining. Maybe if those with dementia were a caregiver before diagnosis these lists that were posted would read different. I think the magic word here is......RESPECT. The person with dementia does not change overnight. Respecting the person who volunterily took the job of caring for you is most important. Neither one of you were planning this for your future. The caregiver is taking on a huge responsibility and the Respect of the person with dementia is needed also. I as a caregiver took on the responsibility as a challenge not a burden. The road on this journey had more potholes and curves than I anticipated. Both as a person with dementia and a caregiver. One of the definitions of Respect is....courtesy..the other is....honor. Courtesy=polite Honor=sense of moral standards. In my opinion it all comes down to simply treating others as you would like to be treated. Both caregiver and person with dementia say and do things out of fustration. We are not perfect. RESPECT...in my humble opinion is the Magic Word.
I, as a caregiver, couldn't agree more, SandyC. Respect is so important. In the beginning, I had an extremely difficult time accepting that my husband's disease was causing all the anger he was showing. But, if I had known a little bit more about how to deal with a person with dementia and had shown more respect when he had a problem he couldn' cope with, maybe it wouldn't have been so difficult. It took a long time (more than 2 years) but I do believe I'm able to control my anger much better now. Yesterday, when I was backing out of our driveway, DH couldn't stop telling me how much easier my backing out would be if I would do what he said I should do. Years ago, I would have gotten angry and would tell him to stop telling me how to drive, but yesterday I was able to use a little humor and stopped any altercation that might have happened. Previously, I would have yelled back at him but I was able to "stuff it down" and change the subject after a while and we had a very nice day. I hope I'm able to keep this up as the disease progresses. I do not profess to say I never get angry anymore, because that's just not true, but for the most part I'm able to curb my anger a little bit, listen to his ideas and try to respect him.
First of all, some message board writing advice to you and everyone - Write your comments in a WORD document FIRST. Then copy and paste to the message boards. If the message boards lose it, you will still have it in WORD to copy again. I learned this the hard way.
Now to your comment. You are in a very unique postion, having been on both sides of the fence. Your insight into both is a gift to all of us. I agree completely about RESPECT, but I have to admit - sometimes the frustration of caring for someone with memory and reasoning problems make me temporarily lose sight of that magic word.
Has your husband seen this site? Perhaps reading the resources on the home page and the topics on the message boards will pull him out of his denial.
Some of these "tips" made me very exasperated. Of course, demeaning or cruel behavior, like calling someone stupid, should never happen. But it seems fairly obvious from some of the suggestions that it's not only the "reasoning button" that can break. The "empathy button" can also become nonfunctioning, and then people with dementia don't know or care how hard the life of a caregiver is.
I do try to take loving care of my husband, and provide him with what he needs and even a lot of what he wants. But I've also learned to say the word "no", and to just sit down sometimes and take care of me when I need it. I am very fortunate that for the most part he does know that the division of labor in the house is very uneven, and sometimes tries to do nice things for me.
I seriously think that in some cases trying to please a person with dementia is a lesson in futility, because often they don't remember the 24 hours of loving care they received in the last day, but they can obsess endlessly about one little tiny thing that happened that they weren't pleased with. They can even imagine the one little tiny thing, and you wind up trying to make amends for something that didn't even happen!
I read once where one caregiver wife said of her husband: nothing you could ever do for him would be enough. Trying to always please anyone and make them happy all the time is a losing proposition. I mean, honestly, did you always make your spouse perfectly happy, every moment, before the diagnosis? Did they always make you perfectly happy? No. Why do we think it's our job to make them perfectly happy now, when it's even harder to do so?
Joan, Thanks for the advice about copy and paste. Now.....only if I can remember! Yes, that magic word seems to loose its magic at times. My spouse will not read anything about dementia......oh well, I have not given up on him yet.