I'm a bit biased, of course, but I think it is, as lmohr said, the difference in caring for a spouse vs. a parent. This site feels more "personal" because it is. I write my blogs personally from the heart, and all of you, in turn, respond from the heart, all related to what it is like emotionally, physically, and mentally, to lose a spouse a piece at a time to this awful disease.
i belonged to 2 caregiver websites for all types of caregivers. it was nice to get info from various sources when dealing with AD but there is NO comparison to joans website here. there is a deep connection with shared, complex. and universal feelings with the AD person being a spouse. it is almost like anyone of us could be writing our own post for another person here. the cortex issues involving spousal AD care are so unique and complicated but on another level so commonly bonded. 'the lost of a spouse is a loss of half ourselves', you said it Sunshyne= and thats what makes it much more intense than caring for another individual. Divvi
I think one thing that's different is that on the Alz Assn site there are people who offer advice who are professionals; who have not dealt in-home with a relative but come up with advice that works in a facility, which is where they work. And when I was reading it- haven't been, lately, it looked like there were just a few people who responded to almost everyone, and not so much a sense of welcoming community as here. We're special, no question!
Gourdchipper, Thank you so much for your story. I wish that everyone could write up their story like you did, it makes me feel like I actually know some of the people I'm becoming more and more dependent on. We live in a rural community with the nearest neighbor over a mile away and some of our neighbors are only summer people, which was great before AD but now so very isolated. This site is my opportunity for conversation other than e-mail from family, which for them, I'm sure they get tired of talking about the latest incident in our AD journey. They must get tired of it because I know I do. You also have great writing skills, in my opinion. Thanks again.
<<Your story mesmermized me. I thank you from the bottom of my heart for sharing your thoughts and feelings with us. >>
Thanks, Joan -- your Thursday blog had put me on the spot so I had to come up with something!
No, really, the forced introspection was probably a good thing for me -- it forced me to really think about and articulate some fuzzy thoughts that had been buzzing around in my head for a long time. The whole Alzheimer's Spouse community really owes you a huge debt of gratitude for giving us this "home" where we can all take off our shoes and feel comfortable talking with each other about stuff that we wouldn't ordinarily share with "outsiders". I don't know how you find the time or energy to do it all!
Gourdchipper, I want to add my "thank you" for sharing your story and your feelings. Sometimes we all feel better once we put our feelings on paper and read them. I know I do. And congratulations on your many years of marriage. I'm a baby - only 47 years of marriage! <grin>
Imhor, thanks for your suggestions about hairdressing -- we've already got the scissors, dating from the days fifty or so years ago when one of the things that Frances and her three sisters enjoyed most about getting together was cutting each others' hair and swapping clothes! Maybe it's "payback time" -- Frances used those same scissors to cut MY hair for a few years back in the early seventies after I had almost ruined us financially by quitting my good engineering job and running all our savings through an ill-fated motorhome rental venture that was inspired by a combination of male menopause and euphoria about the ten million tourists that Disney World was projected to attract to our Central Florida area annually. The Arab oil embargo made what was probably a fundamentally bad idea worse, with the result that I had to put my tail between my legs and return to my former engineering profession after three years -- leaving Frances pretty much holding the bag running a small RV parts/service/rentals business until we could unload the fleet of rental motorhames that we had talked folks into buying as tax shelters. Probably more than you wanted to know!
<<I could write a lot more, but for some reason have been very tired today. I haven't accomplished anything, and actually fell asleep in my chair this afternoon.>>
Marsh, I hope you've perked up some by today. All that introspection that I did about how I "feel" sort of took the starch out of me too -- haven't flirted with anyone all day! Yet.
<<while this site seems to be much more oriented toward ... what word am I searching for, human-ness? There is just such a very different atmosphere here>>
Sunshyne, I've tried but can't come up with a better word either, unless it's maybe "family"? It sort of reminds me of the feeling that we used to get at gourd shows, when one particular grower would invite selected gourd friends to his motel room to sample his latest homemade wine vintages. Folks who had been on their feet all day would come in and kick off their shoes and sit on the bed and brag about Kern's wine and talk gourd talk, and lots of new friendships were formed and lots of gourd growing tips exchanged in that room.
Hi, Mary, do you come here often???? (Isn't that the classic pickup line nowadays?)
Speaking of flirting and such, Frances's older brother's wife died a couple of years ago after being an invalid for about a year -- stroke, dementia, aspiration pneumonia all in a very short time. About six months following her death I began to notice a new twinkle and giddiness in his voice and conversation when he'd call, and told Frances that I was pretty sure that something was going on -- like maybe a new girlfriend. A few weeks later he called and hemmed and hawed and then finally blurted out that there was something he wanted to tell me, but wanted me to promise not to tell anyone else, and I said "You're going to tell me that you have a new girlfriend -- I already know that!" His concern was that folks might think badly of him because his wife had only been dead for about six months -- BUT SHE WAS AN INVALID FOR A YEAR BEFORE THAT --he'd add by way of justification. I told him I thought it was wonderful, and that it sure beat sitting around and being depressed. This widowed lady actually put the move on him, and he was quick to admit that the dating scene surely has changed since he'd had any experience with it sixty years earlier -- he was having to learn to dance, order wines, etc. that he'd never done before in his earlier life -- and loving it! So what's your favorite wine and dance step, Mary?
bluedaze, you probably can't think of a gourd insult that we haven't heard -- but gourd people are basically silly and just let that stuff roll right off. Frances used to delight in surprising guests by wearing a gourd mask that covered her whole head -- it had, among other things, dangly earrings that would rattle when she shook her head.
<<You also have great writing skills, in my opinion. Thanks again. >>
Well, thank YOU, jules! Actually, I enjoy writing, as you must have gathered by now. Over the years my engineering career evolved from mostly design in the early years to technical sales in the later years -- writing technical proposals and preparing/delivering technical sales presentations in pursuit of new business.
Gourdchipper, Cabernet Sauvignon and the waltz, followed by Merlot and the old-fashion rock 'n roll! <grin>
I like White Zen as well, if I'm having shrimp or chicken.
When my husband was stationed in Europe (Germany)in the mid 60's, we both developed a taste for wine - going on wine tasting tours to learn all about them. When we got back to the states, we found that having wine with dinner every evening wasn't something we could afford any longer with small children to raise! It was $.50 a bottle for really good wine in Europe - and $5.00 in the states for the same bottle! After a few years, more American wineries opened up, and we started touring them, finding wines we liked and bought directly from the wineries. Of course, now you can buy them anywhere! Isn't it wonderful? I need my glass of wine every evening. It helps me make it through the night! <grin>
I've been on board here almost daily for over a year now. Occasionally I don't have time to write, but I read almost every day. Joan's place is my sanctuary, and my family and friends are here. I don't know what I'd do without them!
Mary, Mary, still flirting! What does this Gourdchipper guy have that all the women want him? Well, he is excellent at expressing himself. His post was very moving. But all the women were fighting over him before he made that post. The other guys better get into gourdchipping. Gourdchipper, they are not usually like this! You must have cast a magical spell. I'm trying not to be next.
I find myself unable to not loggin most days. its addictive here and I have been reasoning thru all the posts above trying to find a really good reason besides all the above that joans place is so comforting and useful and feels so homey. I think Joan being one of us in the same grind we find outselves has tons to do with it. the 'identification' part that we all relate to when someone has a problem or venting issue. we have many purposes to come here but seems the one that ties and bonds us together the most, is that we are SPOUSES of a terminal AD person who will not survive this disease. those caring for loved ones who are family with AD i admire them greatly. but they have their spouse or significant other to discuss life with and how to confront the disease. We have this loss in common here. as said before, that missing part of half ourselves, our physical and mental losses on top of it all-the loss of someone to interact with life before is just devastating and exhausting to fathom. yet here we are, speaking talking reacting to each others losses and receiving comfort from friends we've only met on the air waves. my way of thinking is that i have been absorbing a part of EACH of you as individuals to make a whole that is lost to me. does that make sense? mentally absorbing little parts of each of you -as spouses to fulfill that mental 'spouse' that is missing. doesnt matter really female or male in my mind, its a conglomeration of everyones bits/pieces that bind together as one whole ideology of what each of us misses so much..anyway i was thinking of putting it into writing maybe others feel the same. this maybe a reason there is such of feeling of 'family' and togetherness here that is not found on other caregivers forums. thanks for fulfilling that need and i am sure the bonds are going to tighten here over the yrs ahead. love each of you! divvi
divvi-for once I'm speechless. Sometimes I want to stop reading and posting because I hurt so much for all of us. I find it amazing to care so deeply about people I will never see.
As each of you have mentioned other sites I have gone to them and looked around...then came right back here. I have no urge to seek another site. My only regret is that I did not find it sooner. The site is like a "spouse" ...we share the same things with each other that we would do with a spouse. Also, you hold each other when you cry, like a kind spouse would do. I also thank Joan for this site and all of you for being here....Ann
Kitty, I have always been a flirt - and still am.....but flirting is all I do! <grin> Haven't had anyone to flirt with in years until Gourdchipper came along! <grin>
Gourdchipper, help me out here. Are you trying to get me to write better, or to express 'feelings' that men don't usually do? I'm just kind of dense, I guess. I have always been short and to the point....result of being a programmer, systems analyst, and CPA. Actually, I do wish I could write -- I have so many things to give opinions about, but can't do anything like create fiction....you know, write a best seller. Have you ever had an instant in time where it seemed you were mind-melding with God, and felt total peace and understanding? I did once, and remember the exact place but not date. I also have the feeling it happened another time but I don't remember where or when. Anyway, bless us all, and grant us and our LO peace. Joe
Gourdchipper, I have to tell you this. Whenever I read your posts I picture you as Walter Brimley talking. I bet you don't look anything like Walter but the way you have of turning a phrase just sounds to me like W.B. Now, has anyone else every told you that?
<<Gourdchipper, help me out here. Are you trying to get me to write better, or to express 'feelings' that men don't usually do? I'm just kind of dense, I guess.>>
TexasJoe, I think you're doing a fine job of expressing your feelings -- no problem there! I guess my intent in bringing up those old threads for you was to suggest that one way that's worked for me in driving away those "lonesome blues" that lots of us are dealing with has been to try to look ahead, optimistically, to a life AFTER this AD journey is over, and to face up to the fact that I need to begin working now to try to detach myself, emotionally, from my beloved wife insofar as future plans are concerned and look beyond present hardships.
I have read posts on this thread several times and always said I shouod say something but never felt inspired enough. Don't know but I want to thank the other guys for their comments. It is such a hard life and even harder to talk about. Because my family kept asking things I was talked into starting a Blog about Carol, my LO. I am having trouble adding to my initial posts. Things are so different for a caregiver vs the patient. I can't really appreciate the thoughts that Carol is going through. Why are things happening the way they are. Why can't I do things I want to do. ? Where am I? Who are these people, Why does Bill push me to do things?. I have said before that my main goal is to just keep her as happy as possible. Certainly I am not always happy but I do try to do things that won't upset Carol. she didnot do anything to desearve this life. How can I help her through it without killing myself. My health is not good and going down hill too repidly. I have a very bad back, bad klnee, shot shoulders, atrial fib, depression and just plain worry too much. It is such a hard life for the caregiver but whenever I play the pity padey too much, I just turn to carol and her life is so much more distasteful. I find comfort being with you guys here but at same time I sometimes feel frustrated by reading so much about this horrible disease. I am afraid that I have lost too much "get up and go" I am sort of meloncholy or lethargic and that is not likie this old sales engineer of a construction product and service. I liked projectrs at work and at home so much in the past but now, I just ride with the punches.
Thanks for the help you guys and gals give to me. bilol
Bille, I have a lot of the same feelings as you described and I would imagine a large percentage of the other posters and lurkers do also. So, for what it's worth YOU are not alone.
You must take care of yourself, FIRST. If you get down you can't take care of Carol. So, try and get some respite time for yourself. You may have to start thinking about placing her. I can't remember what stage she is in. I have also lost too much "get up and go" and it worries me. I am also meloncholy and lethargic and have lost ambition to do anything except care for my husband. I take care of his needs and play on my computer most of the day. Last week I got out 2 evenings to dinner with friends and things like that do lift your spirits for a while.
I keep following your blog and that along with this site is good therapy for you. Take care.
Thanks-Thanks to all of you. My feelings and experiences have already been expressed (better than I could do it) by all of you. However, I admit to having the 'male' problem, ie, being raised that men don't cry and I have never learned to express my emotions. But, the good news is that there has been some improvement in that part of my life because of AD.
Even tho I do the cooking now and all of the other things you talked about, it seems to me that I don't handle my emotions as well as you do. I sometimes resent the life I have now and almost resent my wife of 50+ yrs for causing it. Other times, I feel so sorry for her that I could (could, but find it hard to do) cry. I hide both extremes from her and handle things well on the outside for her, our children and our friends. I think that I give the appearance of being the perfect husband, caregiver, friend, etc., etc. but only I (and now you) know the real me. I sometimes feel like a fraud.
Oh well, Thanks for listening. I'm sure this helped me a lot more that it did anyone else.
bille: Keeping DW as happy as possible is my goal also. My wife used to be a wonderful cook. Now, of course, she does no meal preparation at all and no longer likes many of the foods that used to be her favorites ... it's so frustrating. For the past several months nothing has tasted good to her except fast food ... hamburgs and french fries. She would be very happy going to McDs for every meal. So once a day I've been taking her someplace where she likes to eat. She also likes riding in the car so sometimes we'll go to McDs several miles up the interstate. I order a salad for me or often pack my own lunch to eat at the restaurant. I know the food isn't healthy for her but it makes her happy and I figure at this stage she isn't likely to die of clogged arteries so what the heck.
I have always said that I don't understand woman. That seems even more true now that AD has joined the drama. She used to love to bath and soak. But now she really resists bathng and gets really mad at me. Probably moreso than any other time. I think it must be something associated with her pride and not wanting to admit that she needs my help. She says "Why do you do this?" I try to wait as long as I can without pushing her but she just keeps on stalling. She will not take a shower. I use a mat under the bubblebath water so she will not be as likely to fall.. I skip several days but after 3days I think she really needs a bath. Especially now that summer is getting here and she will be working out side in her garden with a Helper. She still likes to participate in her cloths selection but only partially. She accepts this much more than she does the bath.
It is so exasperating and frustrating. But I keep trying. bill
Log onto the home page of my website - www.thealzheimerspouse.com. Look on the left side and scroll down to "caregiver tips." Click that and scroll to "bathing". It is a link to an excellent article that explains WHY Alzheimer patients have so much difficulty with bathing, and gives tips on how to make the experience easier.
dean-- When my brother was about 4 , he tried rushing down the stairs from the second floor. They were smooth wood, not carpeted. He missed about the 4th step from the bottom and landed uncomfortably poorly. As he got up, he was valiantly trying not to cry. My Dad checked him over, and then said, "When you get hurt, but you don't want to cry, you just say, "Damn!Damn!Damn!"
My brother's eyes got big and round at the permission to cuss.
One of my sisters, coming on the scene was scandalized. My Dad told her my brother had to have a way to get the feelings out and he didn't want to cry. This gave him an acceptable way. Then he asked her, "Do you think it would be as good if he stomped his feet and said, "Cuss! Cuss! Cuss!"? Even she chuckled.
When this AD crap gets to us, we each have to find our own ways to vent. Cry. Come here. Cuss. Stomp your feet. Get a punching bag and go a few rounds. GET SOME RESPITE HELP in and go fishing, bowling, golfing--whatever will give you a break. As long as your wife is clean, dressed, as healthy as possible, happy, and safe you are doing the job just fine. Take care of yourself so you can do the quality job you've been doing. Fight the burnout.
doneit, you said it all. It sounds terrible, but because of the amount of work giving a bed bath then dressing her, I only give her a bath once a week, sometimes even longer. Since I wash her Depends area every day, whats left doesn't seem as important, since she just sits on the couch all day. I do wash her face every morning and brush her teeth every night. For several years now, no bed sores, but am fighting a 'diaper rash' right now with a prescription medicated powder. She does not like the bed baths is also why I don't do them often (she does not think I am her husband). So, Dean and others...carry on with the fight that is our destiny.
The past month has been a real struggle for me. My life has been on hold for 2 yrs and I am now starting to have thoughts of moving on. I have met another woman who is interested in me but does not want to mess with a married man. My needs are not being met by my wife and I struggle to keep from resenting her. I am my wife's caretaker period. My wife knows something is wrong, I do not want to hurt her and tell her what is going on. I am miserable. I am married to someone who I can no longer carry a meaningful conversation with. Recently at church my wife told the preacher she thought he was sexy, this was in ear shot of several people. I am afraid of what else she may let loose with. If I am having this struggle in the early stages I am wondering whats going to happen when things get tougher.
I am not getting any support from family, I feel like calling my stepson up and telling him to come get her. He'd probably pass out from just the thought of having to be responsible for someone else.
I still want the best for my wife and I have to deal with getting what I need.
As I so often say, you are not alone. Both men and women on this board have struggled with this issue. If you do a "search" at the top of this page- type in "sex", making sure the "topic" part is circled, and 8 different discussions will come up. "Sexuality", "Intimacy and Sex", and "Sex Life Questions" are probably the ones closest to what you are struggling with. If you look carefully, you will find many posts by the men.
Also, log onto the home page - www.thealzheimerspouse.com - and click on "Previous Blogs". # 9,10,11,and 44 deal with sexual issues. However, I would highly recommend you start with #134 - a true story about a man who made a choice. I met him and spoke to him, so I can absolutely vouch for the truthfulness.
And finally, here is an article for you to read - http://www.forward.com/articles/11387/
We make no judgments here. Everyone has to do what is best for them in their own unique situation.