Yeah, divi, I'm impressed! My best time so far is about 15 min. Now that starts with her being fully dressed. The most time-consuming task is putting on new depends and trousers...the rolling back and forth, pulling up, about 4 iterations. No wonder my core muscles are in good shape.
well i am doing it on his feet. haha. i dont know which is worse in bed like you or standing on their own. my DH tends to cement his foot to the ground and it takes a crane to lift it into the depend or pant.. :) divvi
Bama, dear soul, from everything I read here you do, indeed, have a halo. So it slipped a little. That happens. You're still wearing it. Your DH, like so many others, is blessed to have a devoted spouse.
Wow....I never thought I would be grateful that my mom has a colostomy...I can change that in about 2 minutes....and My dw is not incontinent yet......I feel like such a lucky guy....
Before I knew about his AD, I frequently felt love for DH but it would quickly turn to temporary revulsion and I never knew why. I was annoyed when he came home from work & I knew I'd feel --oh, I don't know -- something was going to trigger me--his presence would mess up my calm. I was a night owl anyway, so I'd wait until he was asleep to go to bed and he knew that--called me on it. Often enough I think it WAS me, but now I look back and the way we were raised, really good but too serious, routine stresses on both of us, children, work, finances, ME and that undefined 'thing' were all mixed together and almost impossible to sort out. But once I knew what was wrong and as I came to UNDERSTAND it more fully, my love changed, even intensified into a protective love. I felt his peril and subconsciously I turned AD into a monster that I would protect him from--no matter what. I personified the disease, gave it a mental body, a name, *&%^*#, a personality and I fought and argued with it daily. Of course, it was destined to win, but until then, I fought. So my hatred, my vile, my taunts and namecalling all went to the monster. Did I blow up at DH on occasion, get angry, storm out of the room, scream at him--oh, yes, I certainly did, being a normal human being and all, and then his beautiful physical body aged too quickly into an old man but I don't remember hating HIM. Taking it out on that damned *%#&)@ monster, blaming *&^$%# for what it did to him, really helped. I hated that *&^$%@ monster -- it was so intense nothing could replace that.
I take it as a given that we all KNOW our loved ones of course did not want to be afflicted with this horrific disease. Who would!? I also know that even though we are all facing dementia of some sort, we don't know what another is gong through. Some have easy going spouses, others have spouses who are abusive. Some spouses can take care of their daily needs, others depend on their caregiver for every aspect of living. I know we are each of us doing the very best we can. Thank you Joan for giving us this safe haven to share our innermost thoughts and daily struggles.
Susan, I agree.. I too had a few tears.
Betty, very well said!
Even at the nursing home, Lynn depends on me for his care. He wont eat or change for the nurses. I still change his diapers all the time. I am tied with Joe, start to finish in less than 15 minutes. And Phranque, I have dealt with a colostomy bag...ekkk.. I would rather change the diapers.
Ever since our children were little, we have had an expression that we say to each other. It goes something like this: Love is not a choice, I will always love you. that doesn't mean that I have to like you all of the time. I would use this on my children when they were being naughty. Now I say it to myself about DH when he is being naughty.
Reference Bar-bra's comment: "but, think about what your actions and words, or non-words say ....... they truly speak volumes and is that fair to your loved one? "
I understand your method of putting yourself in his shoes, been there, done that. That's why I'm here caring for him, I know he would do the same for me. Doesn't mean I have to like it or feel charitable about my tasks all the time or try to appear "up" or cheerful all the time. My feeling sorry for his situation doesn't help him in the least and there is nothing fair in life or death. Blowing off steam here so I can gather myself up and go back to smilingly care for him does help his situation. My finding solace and friendship here while he's safely in the other room does help his situation.
We are all in a slightly different leaky boat and we all have our own methods of dealing with same, but I believe it speaks volumes about each and every one of us and our genuine love and compassion for our DH/DW that we ARE HERE at all.
"but I believe it speaks volumes about each and every one of us and our genuine love and compassion for our DH/DW that we ARE HERE at all." Amen weejun ((hugs))
"And I do blame the disease, the Kinder Gentler Wiser Shoegirl knows that, but inside of her there is still the young starry-eyed girl who once upon a time fell in love and thought she would live happily ever after. Sometimes she surfaces and her heart is broken."
Susan L. and Nikki, glad my words touched you. Great discussion all. Thanks.
I am still amazed at how well you folks express my experiences and feelings. Thanks to All.
To those of you with the bowel and incontinence, my experience was the same but different. My wife was a beautiful, quaffed, sophisticated lady. Always dressed beautifully and acting properly. Very Very modest ---Until alz cam along. When she started taking Aricept, she lost all control of her bowels. Accidents were so common that I almost wouldn't take her out. When she had a problem, she didn't care. Couldn't care less that we were in the car with another couple, or out to dinner or shopping in Walmart. Thank goodness that discontinuing Aricept and using the Xelon patch almost fixed the problem.
Also, Thank to Joan for referencing the 'Relationship Repair' blog. I had not seen it previously.
Got to go to the nursing home. Hope all of you have a good day
I don't know where else to post this. I've taken a lot of hurtfull flack for posting my feelings on threads someone else had begun originally, but this "title" sounded appropriate and I didn't feel worth starting another thread "OF MY OWN", where I should go to write about my own issues. Thought that suggestion was rather mean, anyhow.....Jennifer, YOU go over THERE from the rest of us and rant.....that sort of impact. (Please have feelings in regard for others)....nuff said about that. Every morning this is my routine....I get up, check on John (always sleeping), feed the cat, personals, make coffee and come here to check my e-mails and then....come to this freakin message board. It has become a life-line and somehow, I'm beginning to think "how sick is THIS????" I can't get out of the house to go anywhere, even shopping or a doctor's appointment without having to haul John along with me. THAT is NOT a pretty sight.....it's ALWAYS a crazy arguement. He'll pull the sheets up to his chin and scream, NO NO, I DON"T WANT TO GET UP!! Once I manage to get him up, bathe and dress him, he's exhausted and I'm totally depressed or angry. Don't even TRY to go to church anymore.....what an attitude to walk into God's house with. Most of you remember what I went through to get John home from Florida. I did what I thought was best for him. STILL believe I did. I'd also believed I'd fallen in love with him all over again 'cause all I had for months was his voice on the phone and loved the times he was calm, reasonable and loving to me. There was the other junk, too, but tried to remember it was the AD talking. We came home and now he has his meds adjusted so he isn't physically a danger to me any longer. But, all he wants to do is NOTHING. He lies in the bed or sits in a chair ALL THE TIME. I can't get him to do or take part in ANYthing. The PT's and OT's don't want to waste their time anymore. Not even to walk out onto the porches to see the world. When ever I CAN do that, he immediately goes to sleep. It is NOT the medication. Took him to the doc. yesturday, ended up having to go to the lab at the hospital to have bloodwork drawn. They think he's having another bout with the anemia he suffers with from time to time. He is down to 109#.
Jen, when people suggested you start a thread of your own, it was not out of meaness. You misunderstood. It was a way for you to track your own writing. I had an ongoing thread for quite some time called "I'm trying to leave." It was good for me in the end, to look back over my journey, all in one place. I had all of my feelings & happeinings in one place. It was better for me (and I think others) that way. No one was trying to push you away from the rest. Texas Joe also started a thread of his own, "Now she's chewing napkins." We could see how his wife was doing, and how he was doing, without hunting all over the place. Why you thought that others suggested this to be mean I don't understand, I think that is being overly sensitive & misconstruing reality. I think the people on this site have a very high regard for the feelings of others. And they don't need to be attacked for making a sensible suggestion to you, from their viewpoint. If you don't want to do it, that's fine. You say "nuff said" but you keep bringing it up.
Jen, one of the things that really hit me hard in the AD process was when my husband lost all initiative. The man who had always been on the go and doing things didn't know how to get started any more. It wasn't that he couldn't do those things any more, it was the switch that enabled him to go and do those things was broken. At the time, I don't think I really understood it was the disease because he was so heathy and physically able. Looking back and knowing and understanding what I do now, I can finally really understand it was the disease. I used to get so frustrated and angry about it. It was one of the reasons that I ended up placing him. This is not a push for you to place him, there were also a lot of other reasons for placing him when I did.
Kitty.....somehow, the rest of my post got lost because it was too long. I don't know where it went.... I've had an uncommon week. Yeah, I got the idea that I was supposed to start a thread where it would only be me and no one else would put comments there. I didn't want to be all alone and not know if anyone was reading or would offer condolences, advice. Shoved aside...."oh, that's just Jen spewing some crap". I say "nuff' said" all the time. To me, it is my way of saying , "moving along, now". That's all. So, Being who I am and having spoken in that way most of my life, I probably won't change. You may hear it again, but it's not meant to be challenging. Reading messages here or in an e-mail, its hard to get across to someone else your intentions.....I mean, there are no voice inflections, no eye contacts, no MOUTH or sighs to read. So, things get misconstrued. Well, don't know where the rest of my post went. Just was saying that I'm going OUT today.....John will only sleep the day away anyhow. Going to do REAL grocery shopping, not just the things that will fit in the wheelchair cart. If the rest of my post shows up, don't get upset reading the end! I spoke of the things I wish I could do that most people can dream of doing, if not REALLY do.....hiking, swimming in a lake, fishing, and..........."flying" on the bow of a sailboat in my Victoria's Secret"! Not being a snot...I just have this sense of humor that you'd have to meet me or talk to me to understand.....NEVER meant as a backhanded comment on what you had said once....NOPE. (hey, I HAVE experienced "fllying" on the bow of a sailboat...but only in my bathing suit......we had a 51' sailboat a long time ago when we lived in Florida....yep, it was much fun, back in "the day") I think we'd actually likel each other if all this ALZ stuff and stress weren't here.
Jen...Start your thread and I promise you that you will have comments. Kitty is right on that and it will be a place we can go to see what is happening in your life. We are family here and we care. Love you
Jen, I don't think anyone who suggested starting a thread of your own meant that no one else would respond to what you said. I understood that the thread would be one that focused on you and your issues. You would write, we would respond, and everything about you would be in one place where you could reread and think about what was there. That's how Kitty's leaving thread and Joe's napkins thread work. We do care and are concerned about both you and John. However, it seems as if whenever anyone makes a suggestion intending to be helpful, you are upset and don't really consider the suggestion. An example might have to do with medication. Reread your responses when people commented on your medication and read what happened when people encouraged Joe to take medication. Your reactions were quite different. I'm not trying to criticize - just trying to point out what some of us see in your posts.
Jen, when you have time, go to the Barnes & Noble website and type Alzheimer's in the "box". There are so many books on the subject that I have ordered (for a reduced price w/my card) and they have helped me so much over the years. My husband sits in his recliner (he won't recline, though) and sleeps. Then he gets up and w/his cane or walker, goes to a bedroom and takes a nap. When he wakes up, he comes back to the family room, sits down and goes back to sleep. (He says he is NOT asleep though) He sits with his head tilted forward, chin on chest and he darned sure "looks" asleep to me. It's okay. That's what Alzheimer's does. Just like babies sleep most of the time, our Alzheimer's spouses do as well. Their brain matter is gradually, but consistantly, degenerating. As that happens, they lose emotions, they lose interest in food and drink,become totally non-verbal, they lose bodily functionality, then the ability to walk, swallow, see, etc. etc. I watched my sister in law live until she was curled up in a fetal position, blind, and her husband fed her Ensure with an eye dropper, tickling her throat to make her swallow!! I saw this disease at its' worst stage with dear June. Never did I ever dream that I'd be living the same nightmare that brothr John endured.
That's where the disease goes if they live long enough. The fact that John doesn't want to get out of bed is NOT unusual, - and I, for one, just let him rest. I have read Texas Joe's comments where he says the same thing.
and, we continue to trudge along this blind path, pretending we know what we are supposed to be doing, living one day at a time.
Nancy you have provided a wealth of information - from experience. I'm nowhere near this point (I hope), but I appreciate what you have said. Again from experience.
Jen, at his age, along with the AD, you have to expect this happening.The sooner you can except it and go on, the better YOU will be. You're going through some tough spots, but you can get through it.
I have reread most of my posts......my feelings do change with my situations. I'm on top of meds. DID take ecception to someone's remark about the fact that I am dealing with Bi-Polar Disorder.......'cause it is well under control. More than meds involved with that; extensive courses in behavior modification, coping skills. Now this AD comes along and WHAMMY! John seems sick (other than the AD, lately).....where'd the rest of my post go, 'cause it explains all that...... and is SOOOOO depressed which is adversely affecting my OWN mental health and ability to BE here with him as much as necessary. He cries and moans and groans all the time like he's dying.......WON'T tell his docs about it. When I say something to them about it, John says I'm lying. I lie about him. Does anyone else's spouse have this type of general pain that seems so severe? And if so, do you know why?
Jen, I, for one, would really appreciate it if you could start your own thread. The reason? I am concerned about you and want to keep up on your progress but I don't have time to read many of the threads. I do pray for you and having your information daily in one place would help make it more focused.
My husband, like yours, sits most of the day. I put a pedometer on him today and so far (12:30 pm) he has walked a total of 400 steps. No wonder he is putting on a belly.
I'M JUST SO FREAKING UPSET AND LONELY AND HATE THIS DISEASE. HE ALWAYS TELLS ME HE'LL BE BETTER TOMORROW, COME OUT TO THE BARN, SIT ON THE PORCH....HE JUST CAN'T TODAY! I AAAAAM ANGRY. AND ITS NOT SOMETHING I WANT TO 'ACCEPT'. I'd rather see him have a heart attach, stroke out, crashandburn, ANYTHING BUT THIS.....THIS IS NUTS! Ssorry. I'm having a very bad day and can't even see. NO, IT"S NOT THE BI-POLAR THING!
My wife is like Lori's husband. If nothing is going on (most of the time), she sits in her recliner (not reclined) and seems to be sleeping. I try to get her to walk, but she gets very tired after only a short distance (and she used to walk everywhere, often in preference to taking the car). As Lori said - no wonder she is putting on a belly.
marsh.....don't you get very sad and tired and need help? Doesn't it have an affect on you and your own mental health? Aren't you a practicing md? Guess you have help? Or, am I not listening?
My hubby is only stage 3-4 but in the last week he has taken to sleeping ("resting") upright in the living room rocker a lot more than he used to, also sleeping in bed a lot later than he ever did. He can't seem to get going on any of the things he says he intends to do. It is very lonely, scarcely any conversation, and the thought that it is only a downhill course from hereon is overwhelmingly sad. I am so sorry for all you are going through, you are in my prayers as well.
Jen, none of us want to 'accept' AD, it's just that you can only fight windmills for so long. You tell someone to 'get up, get dressed, sit on the porch, you'll feel better,' when they are getting over the flu or surgery. It won't work with AD. No matter what you do, what you say, what you try, he will continue to sleep and lose weight. If any of us could tell you how to change things, we would. But we know from our own experience that it is what it is, there's no magic wand, and the best thing for you to do is to continue to love him as he is--and that is all he really needs.
I want my husband to be able to take walks with me, too. I want him to watch a movie with me, go shopping or the farmers market. Hang out at the stock sales with me like we used to do. Paint with his watercolours while I sculpt in silence for the whole day long like we used to. Go to the garden center with me and pick out two bushes I need to replace two that died in an ice storm this winter. ANYTHING. Some of you can still experience these things and it seems as if they have been diagnosed in a much higher stage of the disease. When John goes to the neurologist in another month, is this one of the things he can tell me, what 'stage' he's in???? Or, do I need to take him to the Psychiatrist for this and put him through those tests all over again (it's been at least two years). And, what is the point of that anyway, except for my own understanding?
StuntGirl, yes I do get tired and sad. I don't need any more help right now, since she goes to Adult Day care 3 days a week, giving me time to exercise, shop, etc. I miss going to plays, concerts, etc. I miss our conversations. I miss taking walks in the woods, canoeing the lakes and bays, etc. Right now I am helped by having our kids here for the next month, but the rest of the year it is just the 2 of us. I do get some adult conversation from other residents of this retirement inn. I am no longer in active practice of medicine, but do work in the local Free Medical Clinic twice a month, and I am the medical director. So that keeps me in touch with medicine. I guess the thing that helps me the most, particularly when I compare my situation with most of the others on this website, is that she is very pleasant and easy to take care of. She cooperates fully when I have to wipe her bottom after a BM. The only "trouble" I have is getting her dressed in the morning and undressed in the evening, and even that is not too bad. I do have to grind her pills, since she cannot swallow the big ones. I try to look at the good things we still have and find ways to enjoy being with her. I don't like AD, but then you have to play the cards you are dealt. In this situation we don't have the option of "folding".
And, Bettyhere*, HOW MUCH WEIGHT CAN A MAN LOOSE???? John is down from his usual 160 to 109 (as of yesterday...probably less 'cause we had a hard time getting him to let go of the rails to weigh him properly)....not like the scales they use at the nursing home. He eats when he wants, and plenty. If he doesn't want to eat, you can't make him.
I didn't weigh my DH, it was so obvious he was losing weight and there was nothing to be done about it. He ate normally & drank Ensure, but the weight just fell off of him. It sounds like you have the same situation--50 lbs, that's a tremendous amount for a grown man to lose. I'm sorry, it's just such a terrible, sad disease for all of us.
My husband lost almost 50 pounds several years ago and has regained abut 35. Did someone say that Seroquel will cause weight gain. (I'm going to wear gloves when I put them in the pill tray if they do...) He's regained the weight since going onto the Alz. meds. Don't know what caused it. Maybe it's my Southern cooking! (grin)
He has not spoken a sentence all day long. It's 3:00 pm and he is taking his second "bed nap". He was up at 10 for breakfast, so you can see how a typical day goes around here. I tackled the task of cleaning my big stainless steel vent hood over my 6 burner + griddle cook top and darn near killed myself this morning. (Hard work, backwards and over my head, with me sitting on a big towel across thse burners. (Just try to draw a mental picture of me doing that!!!)
We gotta do what we gotta do, right? The good news is that for about an hour or so, I didn't think about Alzheimer's Disease.
Stunt Girl: I can (have in the past) felt your resentment. For a while, I blamed my wife instead of the disease and that was wrong. She would give anything in the world (and I would too) not to have this disease.
But-----the discussions inre sleeping or resting all the time was more perplexing. I have been thinking that I would like for my wife to do that, but, after reading your posts, I'm going to have to rethink it. Be careful what you wish for. You might get it.
But=====she is so bored and into everything in the house and fidgets from room to room for not apparent reason. She won't do the things she can and can't do anything like cooking, etc., but, you folks have convinced me that maybe i don't have it so bad after all. Thanks PS: Hope Stunt Girl has a better day tomorrow.
Dean, I too sometimes feel envious of those who are saying their LO's sleep so much or are so quiet. Dh is raring to go all the time. Up early, needs me to get up, wants to go bicycling somewhere. He won't go out alone, except to the barbershop or the bike repair shop. This morning he wanted to pick up our cleaning lady from the metro station at 4:30 AM. (she gets in at 8:50 on the dot). Other mornings we cycle 45 minutes to a place in a nice setting where we can have coffee and watch the boats go by on the river, but he finishes his coffee fast and then wants to go home again. Home a few minutes, wants to go somewhere else. Very restless. It wears me out, although the bicycling is good for both of us. It takes a lot of effort on my part to deflect ANY of the energy into mowing lawn or doing other yard work. I like to go places with other people because then at least I can get him to stay somewhere awhile. But of course that's often not possible. But from reading all these posts I know this is temporary. Eventually he will start slowing down and then I'll probably be sorry. (Be careful what you wish for). Actually Friday mornings when my cleaner is here is quite a restful morning for me. As long as she's here he's content to stay home. (Just asks me repeatedly when it's going to be time to have coffee with her) So I get my computer banking and web work done. (Right now I'm just reading threads, however; it's addictive).
I share the feelings you all have cited - anger (lots of anger), guilt, loneliness, yearning for my partner back, etc. I am so very surprised that right now I'm going through a very angry stage and have taken to yelling at him when he screws something up (which is often). I keep telling myself it's the disease, but so far I am having difficulty having that acknowledgement work in the anger control. Halo has slipped big time. I too feel guilty that I have now changed the beneficiaries on all my financial accounts, have sold his car (he has no idea) and have access to his accounts. I know it's best for our survival but it still makes me feel guilty.
LFL ..... don't feel guilty at all. You DO have to do what's best for you and you two. BELIEVE me, the deceit (if you want to call it that.....some of the family can percieve it that way....I know) is worth protecting yourself. I got the advice of a financial planner and an elder attorney and my family is STILL angry with me. Oh, well. I'm the one that has to live with and take care of this fella.
Thanks StuntGirl; I'm trying hard to say it's really the best for both of us (which it is) but then I say "How would I feel if he did that to me?". I guess what he doesn't know won't hurt him. I'm waiting for "the brothers" to challenge everything when the time comes.
LFL, Carolyn, Nothing to feel guilty about. You have to make all the decisions yourself now and you have to make the ones that will help you survive and continue to care for LO. And if it can't be done without deceiving LO, that is too bad but can't be helped. A hard problem for me is that I constantly FORGET that I can't let DH help make decisions. After I consult him about something, which I am doing all the time, just for the sake of conversation or because I'm terrible at making decisions and I want him to back me up, I'm stuck with his choice which is usually the WRONG decision. I have to learn to make the decisions and tell him. It's hard.
To All Of You Nice People: I sometimes wonder why it makes me feel good to know that others are going thru the same experiences that I am? I don't think its right, but, I feel less alone and like others understand my circumstances when I read your posts. Thanks all of you.
I have stopped discussing things with my wife. She doesn't understand and wouldn't remember. Sometimes I feel deceitful because we always talked things over, but, it just isn't possible anymore.
I visited one attorney this week and had my will changed so our children will be co-executors instead of my wife. She, of course doesn't know that I did this, but, it had to be done. I am going to an 'elder' law attorney next week to see if I will have anything left to live one when this is over.
As to telling her whats going on, the local alz support group facilitator told us that it ok to use a "therapeutic fib".
Jeannete===Your words of wisdom -----It's hard---are right on. However, I only selectively 'tell her' things now.
Thanks to all of you for your thoughts and advice. Hope tomorrow is a good day.
Right Dean....I agree with all you said. This site is therapeutic for all of us. I seldom try to talk with my DH either. He just doesn't understand things and we are both better off not trying to make him understand.
I have been trying to write something for Joan's book and so I finally got some words together and sent it to one of my daughters to critique along with a copy of Joan's instructions which interputed by them meant we were to write something upbeat and encouraging. They discussed my offering and said it wasn't uplifting it made them sad reading it and left me with some suggestions. I had a suggestion that maybe they could write if for me but that didn't fly. I have been thinking on the subject and draw a blank about being uplifting and encouraging. Any one of you have a suggestion about how to be upbeat and encouraging?
imohr, i dont think much about AD is upbeat or encouraging. i think you should submit it as you wrote it. besides its your words as a spouse not anyone elses. it rings true for you and thats all thats important. divvi
Lois, I'm in the same boat, with no idea of how to write about this experience as upbeat and encouraging. Other than the many wonderful people on this site and one true friend and a good, good son (well, all those factors are pretty upbeat in themselves), I'd just as soon have skipped the whole last 4-6 years. I simply had no idea life could be that tough, and I thought I'd had my share of hard knocks.
I, too have totally given up trying to discuss things with my husband, John. He just nods and will agree with anything put before him. He CAN NOT make decisions based on sound judgement. Another step in my acceptance of ALZ. Well, I had to make a decision about whether or not to help afford a portion of my daughter's education coming up in the Fall (I know, I know, everyone who knows the situation advises I shouldnl't help). I have been able to figure out several options of where the money could come from, writing out a no interest loan agreement for her , etc. I just simply sat down with him today and started talking about all my options. I have no one else to talk to about it and my CPA and others who could be helpful are not available today......it was very helplflul to just be able to lay out all the information I had verbally, even though I knew it was up to me to make a sound choice.....he won't remember the situation tomorrow and the talk we had. He has just become a 'sounding board'....a place to bounce my voice off. Jen.
and; that's exactly what I do as well, Jen. I have discussed all sorts of matters with him and he just listens. I tell myself it's better for ME to hear my options OUT LOUD. He tries to ask questions,but he has a lot of trouble getting the right words out. I try to anticipate his questions and just answer them. He doesn't really understand, but I can tell he is trying. So sad.
Stuntgirl, please, never, ever loan money to people, especially relatives. You might as well just give it to them because you will almost never get it back--even if they have the best of intentions to do so. Either give it as a gift or don't give it at all.
StuntGirl, you made a list of a bunch of things you wish you could still do with your husband. My husband can't do any of those things either, and yet he looks so normal most of the time. He isn't as far along as a lot of the LOs here, but he can't do any of those things you talked about. And we can't travel anymore. And our social life does not exist except for the kindness of a couple of people out there who try to do something for me once a month. Etc.
We all have our lists we have put on the backburner til another time. you chose how you want to make it thru and survive the aftermath. many members here have their own health issues to contend with one top of caregiving for a spouse. personally, i have not been to a movie in 2yrs and the last one we did try for had to leave within 20min due to DH's anxiousness. i havent taken him out to a restaurant but buy takeout and bring his fav foods home for him to enjoy in his comfort zone- nor do i have alot of company or family over as its alot of work and usually i am overwhelmed myself with the caregiving to oversee a large party atmosphere. but, if i need personl contact with friends i dont have to wait for an invitation by someone else but choose to do a getogether here at my home instead. i dont not have the support of DH family and never have from 10yrs ago. i have never been away for respite for one single nite nor has any of my family or his ever offered an afternoon of respite-and only within a yr or so contracted an agency for 4hrs/wk respite when DH became unable to accompany me on errands. nor do i hold my husband acountable for any of these choices i make.. i try to make his last yrs comfortable and within his abilities- not mine. again its my choice to endure what i do so i cant blame him for what i can or not do. anything is possible if you have the stamina and willpower to set your goals. there are many here who have it many times over what i go thru or what some others are going thru. whatever my dislikes of dealing with AD, i am resigned to see it out to the best of my abilities and hope there will be a time to retrieve those things i left on the backburner for later. i hope its resonable to expect this to happen for all of us when our journeys are over. divvi
A beautiful, heartfelt post, divvi. You are still my inspiration. I, too have things on the back burner - but there will be a time, hopefully, for those. I am resigned to keeping my DH as stress-free, comfortable and as happy as possible, for the duration.
Although the post above this one was written by Divvi.... I think she was writing about ME, Nancy B! Either that or we live IDENTICAL LIVES..
Reading what she wrote was so surreal...same goes for my husband's children from his first marriage. I don't really KNOW them, and they haven't been to see their Dad in years...and call him only on holidays, his birthday, and Father's Day..for mere minutes.
I have respite 3 afternoons a week, but run like crazy during this time. Rarely do I have "nothing to do" during that time. I manage to get into a real sleep by 3 or 3:30 each morning - and mornings are horrible, getting him up, dressed, his breakfast meal prepared, medication taken, then the house work, business work, etc.
I have had a new novel for over a month and haven't opened the cover. I haven't been to "formal church" in two years - since he walked out before the sermon began, never go to the movies or the theater (we were season ticket holders for years) .. and usually we are home alone. I have a folder filled with take out menus from so many restaurants around it, it is unreal. Love those take-outs. BlackEye Pea, Mexican, Italian, Chinese, Thai, you name it, I can order it! :-)
I say this often, and it's appropriate here..."It's OUR KIND of normal."