I know that some of you do not agree with my main goal is to Keep my LW happy. Whenever she smiles, giggles, acts silly, etc. I try to log in as to what caused the demonstration of happiness. In Engineering logic we call this Cause and Effect. And I cannot stand to have the bad arguments we still have sometimes. But not as many. *She is always happy when we eat out so even though it is more expensive and I don't really like to do it so often, I still take her out almost once every day. *She is happy riding around in car so we do it quite often. *She likes ice creeam so----to heck with the calories or use sugar free. Then we get the stool softner from the Sorbitll. *She does like to look nice so I try to select clothes that she likes (that moment) * She wants an answer even if I don't understand her. I say at least---OK, Yes, No, Uhn Huh, UhUh, I guess so, I don't know, etc. * She wants to know who I am talking to on Phone. * If she asks the same question many times, I just try to be patient, way beyond the call of duty!!!! * When she says that "Nobody told Me!!!!!! I still have trouble of ignoring it or coming up with a good answer but it certainly doesn"t do any good for me to say that I ldid tell her----many times. That does not make Moma HAPPY!!! * etc. Are your DH's any different than our DW's?????
i know that it sometimes feels good to scream back, It does not appeal to me.
I completely agree with you, Bill. One day someone came on and said, "my husband's just been diagnosed and I can not convince him to put the toilet seat back down. And we fight about it all the time!"
And we said, er, ahem, pick your battles. There will come a time when you HAVE to tell them no about something. There will come a time when you will have to make them take pills or stay in the house when they want to go out, or you'll have to stop them from driving, or using a knife if it will hurt them, or put away the gun. But for now, you ARE going to have to recognize that you cannot "stand up for your rights" with them. They do NOT understand and it just makes YOU frustrated. Might as well make them happy.
(I don't think she ever visited the board again, come to think of it!)
Bill, when my husband is happy, he is content, and will sit and watch movies and smile. I don't tell him in advance when we are going somewhere, because he will want to go RIGHT THEN, so I wait until he has time to freshen up, then we head out the door! He is happier staying at home, but likes to get out of the house every once in a while. If I'm on the computer, I'll read him the jokes and he'll sometimes smile - once in a while he'll even laugh! He has a sweet tooth as well, and since it really doesn't matter, I let him have his Paydays, Snickers, peanut brittle and ice cream. I just don't buy it very often, nor do I buy very much.
I also try to dress him in clothes that look good on him that he can fasten himself. I bought him knit shirts with collars, to replace the button down the front shirts he used to wear, because buttons were getting too hard for him.
Like Marsh's wife, my husband is docile for the most part and we have a good thing going still. It sounds like you do too.
Oh Lordy yes! PLEASE pick your battles... Little things are so insignificant. Learn to breathe - (not sigh).... turn away. To hell with the toilet seat being left up... Be sooooooooooooo glad he FOUND THE TOILET!
On this day, I feel the "Pepper" coming out. LO got up and completely dressed at 1:45 A.M. and wanted breakfast. Got him back in bed.. and he did the same thing again at 4:00 A.M. --- this time insisting he was "starving to death"... After having a griled steak, baked potato w/all the trimmings for dinner last night!
Did I rant and rave. Absolutely NOT! What good would that have served? It's what we do.
Bille it does sound like you have a sytem down that works for your case. all we were saying before is that MOST AD persons become attached and accustomed to daily rituals and certain schedules that will make it easier in the latter issues to keep them happy. you have a system thats working for her now-riding in the car seems to be a fav among our spouses. my DH adores it and we go everyday out. i just hate to think of you not enjoying things that make YOU happy as well. even if it has its cost to pay with her 'happiness' sometimes. you may find you are going to exhaust yourself sooner than you expect with this peace keeping routine so at least try to get some respite time for yourself occasionally to do things you enjoy. thats what i meant about being 'fair to yourself'..:)giving yourself some peace time too- Divvi
bille, I guess I don't understand the beginning but I probably missed what that's about. But I will put my 2 cents in on what I do understand, I think it's great that you work so hard to please her. I personally agree with you on keeping them happy. Do I succeed everyday, NOT! But I try! I guess I figure why fight the disease? Cause I am not fighting something that I will win, or at least not at this point. I believe you pick your battles in life, and I have said from day one I will try my best to make this journey the best possible experience for my Dh and all involved. Again I may not succeed but I can give it a whirl. Certainly I have days that I don't measure up to my initial thoughts. But I get back on track as soon as I can. I am with you on the yelling thing! I feel awful whenever I have yelled or been shall we say been "Tart" with Dh. And pray that he won't remember in a few minutes! Now when I am alone, I have screamed! But on the rare occassion I have burst I have felt terrible! I certainly get tired of the endless question, but I at least try to please him in the moment. I guess I am of the thought that I won't let this disease distroy me with it! It's got a strangle hold on my Dh but I refuse to let it make me a bitter hateful person who will take my hatefulness out on my LO no matter if he understands or not. As for trying to make the experiance the best possible for Dh, when he was diagnosed I went and bought a new travel trailer (we had just sold our Class A the year before, and both regretted it!) and started on the adventure of taking him fishing and camping every chance we get. It's certainly not my first choice of entertainment but it's his, so I have learned to pull, backup (which is a biggie for me, he always did the backing when anything was attached to the hitch) setup, tear down a campsite all of which I knew how to do but since the diagnosis I have had to do it all by myself, yes even the dumping of the black tank. I am more the stay in a resort kinda girl, but I am getting used to the campgrounds beside some beautiful river or lake.
Please understand that everyone has to vent and though it sounds awful, it's their way of dealing with it. I am with you, but also understand we all handle things differently! Keep up the wonderful work with your DW, you won't regret it in the end. Rk
May I add to your cause and effect list?
If my Dh wants a drink, Heck with it, he can have it! What the hell is it gonna hurt at this point. Others may disagree but I don't hold any illusions as to what the final outcome will be and certainly don't think a drink is gonna change that. So if he ask for a drink every once in a while, he's gets it!
As I wrote this post, I had our new caregivers more in my mind. I was not really questioning any other posts on being HAPPY. I just remember how much trouble I had 4-5 years ago when my LW was moving into stages #5-6. It is so hard for us to learn that reasoning with our LO is virtually impolssible. I kept wanting to tell Carol about her AD but was never able to gain any positive results. They just are not able to reason out a particular situation. Carol still can not understand why she has trouble with her cognitive ability but has finally gotton to the point that she does not realize it. But it was a major problem in the past.
Carol does not drink but she does like to eat, especially sweets. Her wait gain will probably come back to haunt me later when Stage 7 takes hold.
I would like to be happier myself but that is even hardier. I don't think their is much happiness in AD. But at least, I can try harder to help my LW.
Bill - you are correct - there is not much happiness in AD. You can choose to enjoy their moments though and appreciate what they can still do instead of dwelling on how they used to be and what you are missing. You can pay attention and realize that they do a lot of nonverbal communication if you look for it. Some days it can be so hard but then he will reach up and pat me on the cheek or pucker his lips asking for a kiss. Now that he is in Stage 7, I really appreciate those moments. I'm not sure how much happiness he feels anymore but he lights up when he sees me and that has to be enough.
Thanks bille for clarifying. I think just as the reason button is broken for the everyday AD life, it's broken for the realization of the diagnosis. I know with my Dh that he heard the diagnosis, but don't think he had a full understanding of it. Unfortunanetly with all the run around trying to find an answer to my Dh's issue due to his age they weren't willing to diagnose AD so quickly he was in what I would determine stage 5 at the time of diagnosis. But because he was highly intelligent he could mask the issues far to well that Doctors didn't see anything and reasoned that it was the post poliio for many years until of course the test results started coming in.
As for the happiness of the journey, I agree that there isn't much around these days, but it's how I handle the issues/disease that will make myself and my Dh shine thru it.
As far as this diagnosis thing is concerned, I am not sure the medical profession plays square with the AD community. From the beginning, (1996) Carol had all the early symptoms of AD but the DR's ran every test trying to find something else that would refute the AD symptoms. They used infrarcts, TIA's mini-strokes,etc. They finally did a test with her head wired for everything and found that she was having periods where her heart actually paused, cutting off blood to the head and causing nauseau, vomitting, shaking, passing out, episodes. After they discovered the pausing, a pacemaker solved those episodes and no more of that problem Even the Neuro Pcychologist did 6 hours of questioning, which made her extremely upset, we still did not get an AD decision. Still wanted to do more testing and therapy. I said no and accepted that she had AD. Her IM DR agreed and no more tests. Seven stage steps have progressed almost exactly what Alz Assoc. predicts. I think we and the Gov't just pay dfor a lot of questionable tests.
IMHO a lot of my DH's care comes down to creating/mnaintaining an environment he is comfortable and safe in. To that end, when a new behavior/issue problem comes up, I work hard to move from the dismay/anger/frustration modes into the "how do I work around this" mode. Being open to his odd sleeping and eating schedules is better, and more peaceful than trying to hold him to "Normal" patterns. At the same time when it comes to his standing outings to the store (big deal to him), I remind him that the Sunday outing is contingent on the weather, and he does accept that, grumbling. There are lots of things I let slide because in the greater picture they are small potatoes. Some things I come up with another way to deal with. When he started spitting phlegm anywhere he was(Gross), I got him a spit bowl (think of old Spittoons). He accepted, uses it, and cleans it himself. No more on the carpet or wherever. Also, no big confrontations. More peaceful for both of us, and safer that way. None of us want to be setting off the big temper tantrums that can occur. At the same time, I do things I want, but he knows I'll break off to pay attention to his needs. And sonmetimes I will do something for myself that he doesn't really appreciate, but I make it clear that it is happening, and that while I'm doing that, he'll be doing something else. It all really boils down to finding what works to get both of us through in the best way possible, and we each have to figure that out for our DSpouses and selves.
Carosi, we have "sputum issues" as well. He spits (yukeee) on the floor, into his shirt, on the bedsheet...wherever. Totally grosses me out. He was such a mannerly man... Some things I can just look away from and others simply blow my mind...like this.
Nancy B-- Get him a bowl. I got a plastic crock style dog dish, after he broke the ceramic one he had. Looks very generic. He puts a squirt of dish liquid in it, and washes it out once a day (usually). Way better than on floors, carpets, clothes, etc. Absolutely not on floors--I use crutches. And no need to confront him about it.
As we chose the battles when our children were young, we can choose the battles now. Understanding the cause (in our case vascular dementia) helps me overlook some things--but not all and not all the time. I just *try* to keep a pleasant atmosphere going because it's easier. I do feel resentful sometimes that it's all one-sided giving.
Carosi, every time you mention your crutches and braces, I realize how truly difficult all of this HAS to be on you. Everything is doubly difficult. Can you share your story about how this came to pass in your own life?
I was diagnosed with a neuromuscular disease before I was 18 mos. old. Over the years of therapy and braces, school and growing up, that diagnosis was refined to be Charcot-Marie-Tooth Disease. It normally manifests as lower leg weakness and/or foot drop after puberty or later into life. It is slowly progressive and genetically passed. It was only into the '90's that my form's genetic error was ID'd. Luckily, we were able to have my mother, sisters,brother and daughter tested for my error. None of them have it, so my case is the only one in our family. The error is one that if you have it you have the disease. I was out of braces for a few years, but weakness in the ankles was causing repeated sprains and falls, so I went back into short, knee high braces. When my ankles started striking the metal uprights with every step, I went into plastic braces(orthosis) . My daughter thought I was nuts the day I put on cheapy tenniis shoes and went out in the rain and stomped through every puddle I could find. I'd never been allowed to do that---leather shoes, etc. Over all these years, I'm 60 now, The CMT has slowly crept forward, often catching me by surprize with new things I can no longer do. But, I am still walking, slowly, with my KAFOs (Knee/Ankle/Foot Orthoses) and crutches. With all my experience falling over the years, my first broken bone happened in 1986 when my knee buckled and I feel in our driveway while talking to a new neighbor. I ran my household on my hands and knees for 3 weeks until I could hobble on the cast. My only other broken bones happened in 2008 when I tried to carry a blanket with the wrong hand, on the crutches. I fell, but it wasn't the fall that did it. When getting up, my right foot was at an angle as I was pushing up and my DH helped lift me to get me on my feet. I broke a tarsal and metatarsal in the foot. Both times I did these things it was in my braces and the braces didn't break. Go figure. The CMT primarily affects the peripheral nerves, legs and arms. Because of the type I have and the length of time my case has had to progress, I have more involvement. I have some hearing loss; and noticable back curvatures. My hands and arms are losing some function. Thankfully, the challenges CMT presented in my early life, taught me to think outside the box. I look at the end result desired and then fugure out how I'm going to get there. There is no such thing as "Normal". There is the 'common' way to do things, and my way. Also, there is the solution, "If I can't see it, it's not there."--works for cleaning tops of fridges and under couches. <grin> When I married, I knew DH had significant Learning Disabilities, but between us we made a team. His later development of Mental Illness, still left us with much we could manage okay. We raised our daughter to be a caring and independent person. She moved to California after college to get work in her field. Since then she's married. We miss her, but are very glad we were able to raise her to not feel responsible for taking care of us. A long but condensed version of my story. Others here have their health issues too, but the binding tie is the trip we're escorting our LOs on as the dementias steal them from us.
What an incredible story ... you are amazing! I hold you up with the highest respect and admiration. I cannot imagine how you manage to do all you do... You are an inspiration to all of us!!!
carosi, I love your way of thinking, Oh and by the way the only "Normal" I really know of is the setting on the washing machine! Your a find away-er! Very special! Keep up the great work.
Nancy, how's the storm going? Hope it's passed on by.
Nancy B, thanks for asking carosi to share her story and thanks carosi for sharing it. You are amazing - all this plus caring for an AD husband. You give the rest of us courage to go on.
Thank you, Dazed. Guess I over-reacted to the storm, but it really had me scared. It was just another reminder that I'm here alone...so to speak. The thunder was just awful, and each loud clap made me jump! I just sat here with my laptop open and kept typing to all of you. Thanks for being there.
Nancy, you're fortunate you didn't lose power. Then you would not have been able to stay on-line. When we get a major storm we usually lose power for a few hours. The last one, we lost power for 2 days. Even the telephones went out.
well, in 1961, September, I was in a brand-new house in a Houston suburb and Carla (I think it was) came through. My husband was in S.F> on business and I had no curtains up yet. Sat there with 18 month old son and very pregnant, watching the windows buckling in and out. And no power except gas. Next day I was the only one who could boil water. Scary!
I remember Carla!! but Hurricane Ike last September (Friday 13th actually) was so much worse with almost 3 weeks with no electricity, a week without being able to 'drink water from the tap', and so many services and businesses closed. They, too were without power. It was horrible. I know of one AD patient who regressed so much during that time, he has had to be in a full care nursing center since.