Why is it that I have accepted my husband's AD and that he is slowly dying, can not talk, doesn't know who I am, rarely can smile any more, doesn't understand the simplest directions (please flip up the light switch or please hand me the newspaper), etc. --- yet, when anyone leaves out my fruit juice after getting themselves a glass and doesn't put it back in the fridge so that when I get up the next morning, I have to pour it down the drain, I blow up. Or when I have requested ONE thing that takes FIVE MINUTES to be done during the following EIGHT HOURS, and I come home from work to find it hasn't been done, I blow up. Or when I have made an appointment with a repairman to come to my home, and told them my circumstances and to call me ahead of time and allow me 15 minutes to get there BEFORE arriving at my house, will not do so and will show up and try to converse with my husband THAT THEY HAVE BEEN TOLD HAS AD, I blow up. Now understand - I don't blow up at him! Nor do I blow up where he can hear me...but I blow! I find that I am gaining patience with him, but losing it with others. (I go into the bathroom and tell them off where no one but me can hear them!)
I am looking forward to Thanksgiving and Christmas, but want them to be quiet instead of the noisy ones of the past. Maybe it's because my husband is getting worse. Yesterday I sat in the Living Room in the afternoon and had a glass of wine and watched some shows I had DVR'd while my daughter watched movies with my husband in the den so I could be alone for a couple of hours. I had cut my wrist while sorting clothes for washing, without any idea how I did it, and didn't even KNOW I had done it until I saw the blood on the arm of my chair; a broke a fingernail dusting (that isn't easy); two lightbulbs burnt out; the painter who was supposed to come and paint our shutters hasn't shown for two weeks and didn't call this weekend; and I just felt like everything was going wrong for me - and what was next!
I can start feeling sorry for myself - then come here and see that nanapapa lost her spouse and I get mad at me for feeling sorry for myself when others have it so much worse than me!
I can take the big things - it is the little things that are getting to me!
Mary I know what you mean about the little things. That is my problem and to be honest most of my DH's problems are little. Who knows what I will do when he gets to the bigger things!!!!
Mary,Sorry you are at wits end with the small stuff!:) its just having to make all the concessions with everything AD uses up just about every ounce of our patience- so practically nothings left for the everyday issues. i know too how you can blow over stuff that normally wouldnt irritate me so much. my DH has been trying my patience all day, i am trying to set the TGiving table and get things done and he goes behind my and moves and hides all the silverware or napkins..myohmy! and just now he is messing with the alarm pad and pushing buttons and doesnt even ackowledge i am speaking to him..its quite irritating and the fustration sets in or course. i decided to stop it all and just take a breather and remind myself to breathe and relax:) i think we are due a blowup over the small stuff if you are handling the big issues so well! my best, divvi
Mary, I understand, my hubby is not to the point yours is at yet but it is the little things. He forgets to shut doors, flush the toilet and put things where they belong. This week we have had to have a toilet replaced and yesterday the hot water heater (6 months old) quit heating water. We could not get a repairman on Sunday and today he came and said our heater is on recall and we have to call Whirlpool. Come on I go get 3-grandkids tomorrow for 5 days I NEED HOT water. The part is ordered and will be here tomorrow, I am driving from Harrisburg PA-Binghamton NY to get the kids so I pray it will be fixed when I get home about midnight. I found myself very upset and ready to scream. So my heart goes out to you. Have a bigger glass of wine and forget the dusting...
I do understand. I feel like you wrote my thoughts. I had a conversation with my sister this weekend about blowing up at the wrong people (mostly her) and losing it over the smallest things. I hate it when I lose it with the innocent bystanders who inadvertently become the last straw that breaks my camel's back. I think that because I am dealing with so much and have so much responsibility that the very least the cosmic universe and all of those little things can do for me is just DO IT!!!!...behave and stop going wrong! Really...is that so much to ask??? I have always been most irritated by the little things that go wrong; now it's worse.
Boy Mary! I totally understand. I lost my patience with my husband, while trying to help him with his shower. I always ask him if he needs to use the bathroom before I start the shower water, this evening I ask him 3 different ways if he had to go, never answering. Finally, I just lost my patience, now I feel so bad. I have apologized, I seem to be able to handle the really big issues, but not the little things. When I have lost my patience with others, I just try to explain that I have very little patience left, spend it all at home these days.
You have all stated my feelings exactly! My DH can pretty well care for himself, shower, shave, etc. No bathroom problems. But it is the LITTLE THINGS! He will empty the kitchen sink strainer down the drain - instead of the garbage pail. He love to load the dishwasher, but puts things in the bottom that should go on top - so I always have to re-do it when he goes to bed. Then he empties the dishwasher and I can't find anything. Yes, these are small things, but they add up and all of a sudden it becomes a big thing. Yes, I know the worse is yet to come in our case. I wonder if I'll be able to handle it???
Of course it is the small things that drive you nuts. Mostly we have a handle on the big things. But the small things get to us because there is no way to be ready for them.
What is he going to break next? We've had a string of things broken in the last week or so. What will he take apart that I can't put back together? Etc.
And Vickie, I've got dishwasher issues too. <grin>
My microwave (the kind over the stove, no longer nukes (suddenly yesterday). Those cost around $500...and I didn't realize how much I use the D__M THING TIL it broke. i actually had to heat the left over spagetti in a pot, God help me. Yes, it is the little things that get you. My DH just went to bed (it's 7:30pm.) he got so tired getting out of bed at 5pm and then eating, at 6:30, that he had to go lay down. On the other hand, I got rid of all the recylcables, tied them sorted them, and put them out. redid my pantry, redid the shelving paper in one cabinet, vacuumed, went to the store, walked the dog 3 times... but he was too tired to stay up. So, if anyone comes near me right now, and tells me it's raining, I'm sure I will bite their head off. and you know what, It's OK to sometimes blow off some steam sometimes you need to, or you'll just explode.
I know this subject well! It is the little things that set you off because you are so worn down from the big things. Being totally responsible for the care of your AD spouse in a loving and kind manner, emotionally, physically. You probably do everything around the house as I do. You are patient. THEN! everything seems to be up side down over the least of things. I like to go in the bedroon and punch the pillows! I cry for a full 2 minutes.....I KNOW, I KNOW. The worst is yet to come for me. I also wonder if I will be able to go the distance.
Jean, yup. Me too. Then I get back on the wagon, because I choose to.
Look, if you need anti-anxiety drugs, have the doctor give you some.
And either way, recognize that you have some choice about how you feel. I work on the idea that I can choose to be happy anyway if I want to. I can choose kindness and patience, both for him and for me, if I want to. There are things I have no choice about. If he breaks something, or can't handle visits with the neighbors, that is the way it is, but I can choose how I go on about it.
Starling, sometimes I wonder if i have really accepted that my DH has AD. Most of the time he is okay....no problems shaving, bathing, walking or eating and certainly no poop patrol! It is the short term memory that gets me. I think "Why can't he remember something I said 2 minutes ago" or I tell him something and the next thing he is telling me what I just said like it is news to me. I think I have pretty well accepted that he can't remember where things go or where he put something, it's when he looks in crazy places for things. Like the tool box for BenGay, that's when I can't believe it. One day I will have it all figured out....right before I start banging my head on the wall.<grin>
Choosing how feel, choosing happiness, choosing kindness and patience...these are virtually the same words I use professionally with my consumers. I have tried to live by this attitude for many years. I just find it getting harder to remember. I have "re-found" a book I read years ago, "The Prayer of Jabez" by Bruce Wilkinson. It is a short book and an easy read. It basically explains why and how you can ask for blessings for yourself first, so that you are equiped to help others. I really need to read it more often.
Funny looking back on the early stages of AD I felt the same way always upset that DH would repeat constantly and not remember a thing i told him 2min ago. losing everything and constant questioning over andover nearly drove me to meds myself. I was at wits end with how it affected our lives and constantly comparing how it things used to be and wondering why he was irritating me soo?. well, now i look back and think if i only could see the future today-back then-i would have done things much differently- how this disease progresses and the unfortunate changes that have become..i can see how we all 'evolve' with the disease from beginning to the end. now i think the caregiver goes thru similair stages as does the AD victim. we need to do the 7 stages of caregivers now!-Divvi
Like Divvi, 2 years ago I was extremely frustrated w/DH's short-term memory. As he has slowly progressed and I've read some of these posts, I find I'm able to be more patient and kind. I can also take care of me without feeling guilty.
However, almost 2 months ago when my pulmonologist put me on oxygen. THAT was sort of the straw that brok the camel's back. I just started bawling and couldn't quit. The next day my GP ordered an anti-depressant for me. I've been on it for almost 2 months and feel fine. My breathing has even improved and I don't need the oxygen all the time.
Now, we are taking one day at a time. No anxiety to speak of. If the kitchen gets cleaned up, great. If not, well, maybe later. I think I'm getting lazy. But that's ok. I'm almost 78 years old and maybe I deserve to be a bit lazy. What do you think?
Funny, you mention lazyness. I am sitting here on the computer, not walking the dog, not showering, not emptying the dishwasher, not vacuumming, what else am I not doing. There is so much in my life, I' find a little time alone, playing with friends (you guys) allows me to get on with my day. sometimes more time, sometimes less. I'm 65 and have plenty of energy, but you know, sometimes we just have to pamper ourselves., just a little.
I have said it many times, but when I start feeling the frustration, coming here and reading everyone's comments lets me know I am not alone and someone out there understands. I find myself focusing so much on my DH that I lose myself. After I spend time with everyone here, I can find myself again for a little while. i get back to living and trying to find some normal for me. This is an amazing place because of each and every one of you...
Probably because of my own disability, I developed my own way of doing a lot of things. I would look at the chore and the end result desired, then work out my own way to get from start to the end result--not always the "correct" or "normal" way. Along with that approach I determined that chores would "be there until I get there" because they don't do themselves and it is seldom, if ever, that anyone jumps in to do them. The third possible step in handling chores, is more for my sanity than anything---"If I can't see it, it's not there."
The first time I laid that one on my hubby, when we were just going together, you could have scraped his chin out of the basement. I then expained that if the top of the refridgerator was all dusty, I couldn't do anything about it because I can't reach it, and can't climb up to take care of it, so I had to either make myself crazy about it or find a way to deal with the situation. This is the kind of thing that isn't a really serious issue, so "If I can't see it, it isn't there." End of chore.
It's not laziness to pace yourself and maintain your energy level and sanity. Very few people WORK 24/7. Very few people go without breaks, and vacations. We have to be smart and take care of ourselves so we can take care of our LOs, and if that means there's a little dust, or the dishes get done once a day, or Monday's laundry didn't get done until Wednesday---Oh, well.
It is WONDERFUL to know that I am not alone!!!! Thank you all for letting me know that!
My children always teased me about the fact that my house had to be spotless (and with four kids, 4-10 pets and a full-time job, no less!) except for their bedrooms as teenagers. Those I refused to go into except for Saturday mornings when they invited me in for an inspection, because they couldn't go anywhere on Saturday until their room was clean! All clothing had to make it to the dirty clothes hamper, or it didn't get washed. I must have trained them right! <grin> However, NOW....I can sit and look at dust; I can sit and see at least 5 things I should be doing without any remorse at all. I know that if I get up and start working, my husband will get up and try to "help" me, and he has lost the ability to do so. It's easier to wait until someone takes him for a walk, so that I can get up and get one room cleaned while he's gone! <grin> However, I have learned to live this way for now and it is okay. I'm okay now. I've gotten my perspective back in place. Calm.....calm...
Carosi, you said it...it is not laziness. It's priority.
Divvi, you are right. We need to do the 7 stages of caregiving! I am going to write the basics of those stages. Everyone, please add to each stage for us all........(I may have gotten some of them wrong...correct me, please!)
1. Realizing that your spouse isn't acting and reacting to things the way that they always have. Watching those changes and trying to discuss the changes with them. Finding out that they don't see those changes even when they have been pointed out to them. Sometimes they seem like a different person and you wonder if something is wrong with your marriage.
2. Making notes of the changes in personality, memory loss, verbal response loss, other symptoms and other physical problems your spouse may have and watching your spouse more closely to try and figure out what could be wrong. Seeing them hide things and change their eating habits. Seeing them get frustrated without their knowing why. Noticing that their visual perception is off.
3. Researching on the web to see what these symptoms mean. Calling the doctor's office and making the "annual checkup" appointment and going with your spouse. (Sometimes it takes several appointments and tests to get a diagnosis.) Trying to maintain a normal lifestyle when this stranger is living with you. Your loved one occasionally returns to be with you for short periods of time.
4. At spouse's stage 4, you know what is wrong with your spouse and you start trying to make certain that your spouse gets the correct diagnosis. At this point, spouses sometimes get fired, or have fender benders, or take the wrong way to the store, and other similar occurrences. You know that you have to make certain that you have the legal and financial documents in place while your spouse can still sign.
5. You realize that you have to take over the full responsibility for everything, including your well being, his/her well being, the houses, the cars, the purchases, the repairs, etc. You wonder if you are up to it. You do the math and realize what you can afford to do and what you can't. You start researching alternatives for their care in case something happens to you. You begin mourning the loss of your spouse and your marriage.
6. As your spouse loses abilities, you pick them up and add them to your load. As you see that he/she can no longer stay alone, you make the necessary arrangements. You mourn more. If you are one of the more fortunate caregivers, you have discovered this site and know that you are not alone and get help from others who have answers that you didn't even know the question for. You shift your priorities, change what is important to what is vital.
7. As your spouse reaches stage 7, you realize that the person you have loved and cared for is at the end of his/her road, and you mourn even more for your loss. Realizing that he/she is on their way to a better place, you miss them even though the body hasn't given up the fight. You try not to feel guilty. You try not to second guess yourself. You need to know that you have done everything in your power to give them all of the love and care that they needed and you have received their love and gratitude (though most can't express it) for taking such good care of them. You need to make certain that you take good care of yourself while dealing with this long goodbye.
This is great, Mary! I need to take some time to think about it.
But one thing that struck me right away was #3. I never did any research on the web to see what my husband's symptoms might mean. (This belongs in Ripley's Believe It or Not!)
Carosi--you had a stroke of genius! If you can't see it, it isn't there. Just wonderful. My eyesight is not good and believe it or not I can't see dust on the furniture. After two weeks without dusting, I can safely assume there's some there. So, today I will dust the furniture because I'm having 12 for dinner tomorrow. But, frankly, I dougt if anyone will notice that I dustred. They wouldn't even notice if I don't dust. Makes me feel rather noble though.