When my husband started behaving so much out of his normal personality, I backed off (which was unusual for me, because I normally will try to find out what is happening and fix it). I didn't know if it was him, or me, or if my marriage of 44 years was in trouble. There were occasions that I even THOUGHT about leaving him due to his lack of interest, lack of concern, and determination to do what he wanted, when he wanted. We had ALWAYS decided together - we didn't care what we did, just being together was enough - and this had changed, never to return.
I became quieter (for me, that was a big change) and more reflective. I began to pay attention to little things (usually overlooked) and made notes of his personality, behavior, memory, visual perception and inability to write words and respond to questions. After 3 months, I began to investigate possibiities on the Internet, and within a couple of weeks, was certain he had AD.
I then made an appointment with his physician for his "annual physical" (the only time he'll go to the doctor) and went with him. He convinced the doctor that there was nothing wrong, and I was left looking like an idiot. I then began a quest to prove it to his doctor. While doing so, I found myself changing. No longer did I take anything for granted other than breathing, eating, having a job, and paying taxes. I could not plan trips, because he would change his mind; I could not invite company over, because I didn't know how he would react (mainly, he would fall asleep and start snoring - and some of the guests thought it humorous - others were embarassed); I had to slowly begin doing jobs that he had been doing, so my "relaxing moments" disappeared. Now, I do all of the work that was for the two of us. This is my background for this discussion - now for the changes AD has made in me.
AD has made me more aware of other people's feelings; it has made me appreciate life more; it has made me appreciate friends more; it has made me organize my paperwork and financials so that my children won't have a mess on their hands should something happen to me; it has made me less self-centered and more caring for others; it has made my family more precious to me; I am more sensitive to others and their problems; in a big way, I find that I am a better person.
Well said Mary. i feel the same way. We do learn to appreciate the little things and have more compassion for those around us. and getting our personal papers in order is high on the list as well. divvi
Wow Mary, you hit the nail on the head. For me it happened gradually, but quickly, we have only know each other 6 1/2 yrs. The changes began before our first anniversary, but for him had really begun 7 yrs earlier. I became less dependent on him, reverting back to the self-sufficient single woman, frame of mind in getting things done. I became depressed dealing with his changes and his depression/anxiety/suiciadal ideations. I became more focused on how it was affecting my family. We were close to a seperation and marriage couseling when the dx came. Everything changed in a moment. All my hope and dreams for improving my marriage, our future, our growing old together were gone. I have proved to be a stronger, braver person than I ever believed I could be. Now with him at the hospital, awaiting placement, I am adjusting to living as a "single spouse", "married widower" etc. Taking custody of a 2nd Grandson has helped keep me putting one foot in front of the other and I know I can't rollover and die like I'd like to. I can't die 5 minutes before him, as I always said I would. I need to be strong for my boys.
I have also grown a thicker skin. As my therapist says, "you are only a walk-on in everyone elses play". I have stopped expecting my friends to think like I do, to do what I'd do, what I've done for them, and just appreciate when they call or write or do something nice. Unless you walk the walk, you can't talk the talk.
Thanks Mary, for opening up this thread. I have learned so much from this wonderful family. I so appreciated every tidbit of info, consoling and encouragement that I receive and am only to happy to give back.
Yes, I had a diagnosis, but that is exactly what happened as things changed and as he stopped being able to deal with stuff. Sometimes I knew this was the "last time". Sometimes I didn't realize it until after. The last vacation was just before I started pushing for a diagnosis for example.
Mary, this is a great thread and your post, as so often, is inspiring. I'm going to give this some more thought before posting here, but AD has certainly changed me, and is still changing me, BIG TIME.
Susan, thank you too : <I have proved to be a stronger, braver person than I ever believed I could be. > I think this is probably true for many of us. It may be small comfort but it's not a small thing.
You know, this thread has made me realize that many people go through life without being REALLY challenged. At least, challenged as we dementia caregivers are. To me, this experience has called for all the strength, wisdom, energy, faith, patience, creativity, and flexibility I can muster. Many people care for loved ones who go through horrific illnesses resulting in death, but I think few have the duration of AD and other dementias and require as much stamina to endure. So if you're going to give your LO the best care possible, and manage to survive intact, you MUST change from your previous self. This experience has forced me to become an independent adult, finally, in my late 50's. Now I realize I should have learned more earlier in life, but better late than never!
My husband's FTD has changed me from a quiet, shy person who made my husband do anything that scared me to a person that can be angry at someone and not care. I was the person who worried if someone didn't like her. I never exchanged anything at the store because I didn't want to answer any questions. I handled the day-to-day bills but he handled anything big like mortgages, car buying, repairs, other loans. Now I have to do everything. I can be quite ferocious now if you anger me. Even my parents are quite shocked at what I can do. I was the girl who never had a date in high school and stayed in her room and read book after book.
I know I can take care of myself, but I DON'T WANT TO. I want someone else to be there to help. I am only 50 and have a lot ahead of me. My husband is 59 and I don't know how long this journey for him will be and it scares the **ll out of me.
Great thread Mary! This ALZ experience has changed me in so many ways...I am stronger and more capable than I ever thought possible. I have learned patience, patience, patience. I have learned to appreciate each day for what it is. I try not to take anything or anyone for granted. I am much more aware of my own mortality. I fully realize there are no guarantees. I try not to borrow trouble from the future. I am extremely thankful for my own health. I am learning to be a bigger, less self-absorbed person. I am learning a broader perspective of life and of death.
I used to be slender. Now I'm fat. I used to be healthy. Now I'm not. I used to be fun. Now I'm stressed out and/or depressed. I used to have interesting work. Now not so.
But seriously. Well the above is true, but also true
I'm stronger than I ever thought I could be.
My heart is more open.
I feel the pain of others more now than before.
I see more.
I live life for "moments" instead of "peak experiences" like before.
Moments like cuddling with my pups, gazing at a Rose Breasted Grosbeak, watching the squirrels struggle to get to the feeders, waking up to the site of the little Bambis with their Moma sleeping in the hollow below the house, the smile on my husband's face while he's listening to an old Blues singer on stage at the Blues Festival just steps from our front door. And so many more.
Moments.
Just need to remind myself to hang in there between them and watch for them and breathe them in.
Mary, I hardly know what to say. You really made me open my eyes and 'figure out' how I've changed. And, yes, I've changed. DH was dx 3 years ago this month but I knew what was wrong probbly 2-3 years before that. Maybe more. I've changed from the traditional 50's wife that never did anything without checking with him first--to a very strong, independent woman who handles all of the finances, got all of our paperwork (wills, POA, etc.) taken care of. Got our cremation all handleld, did a kitchen/livingroom remodel, roofed the house and redid our yard. I know I have more patience (although some of my posts would beg to differ.) I am more open hearted, more appreciative, live each day for what it is.
Thank you so much for starting this thread. Very helpful and insightful.
hmmmm I have to thank everyone on this site,over the last year or so I have much more patience,I try to see the humor in the strange things going on around me instead of getting frustrated an going off on a tangent,I no longed ask "what the hell did you do that for" realizing now that she doesn't know why she hides her purse 10 times a day or turns the furnace on with the windows open,if I couldn't laugh at some of this stuff I'd be ready for the nuthouse
I have done almost a 360. When my husband had the 'affair' our pastor said a man can only make love to his mother for so long. See, my mom brought all us girls up to be strong, independent women which is not good for marriage or two joining as one. I had to stop doing all his around the house - which I would do so he just had to come home and relax or do whatever he wanted. He had no chores to do. It was very hard to stop doing his jobs around the house, but I managed. I worked hard to keep the kids quiet when he was home or around them cause my dad would beat me when my siblings or I were noisy when he was trying to watch his wrestling on TV. We have done good the last 25 years of sharing the workload but now it is shifting back to how it was when he had the affair. I stuffed all my pain for 10 years before going into a deep depression - went through counseling and have been OK until now.
I think this shifting back to what destroyed our marriage (which never really recovered IMO) maybe is causing some of my pulling away. Since the diagnosis in January I realize I have pulled away and become almost nothing more than someone living here. I have spent the months being consumed with researching this disease, trying not to be angry, trying not to kick myself for not leaving him back then (then I wouldn't have to deal with this), doing as little with him as possible. I feel bad about that and know I have to swing back towards him, I have to need him as active as possible. I have the SSDI done, he will get SS if nothing else starting this fall. He wants to see his sister back in NH, so am working on making that possible. At the same time it makes me angry that once again, we are spending money on what he wants, not what I want. My wants and dreams have always come secondary to his. When we started doing Workamping it was my dream more than his, but he was ready. Now it is cut short - again- because of him. I want to run away and start living for me, not him. But, I have to stay, start doing all my job and his - taking care of a motorhome/rv is different from a house.
I keep wishing his dad would die (horrible I know) so we would have the money to pay off the motorhome and do some traveling while he is still able. (his dad was diagnosed in the late 80s with AD and still hanging on.) It wouldn't be much - the house is worth nothing, so it is just the land. I want Art to enjoy it while he can. His mom killed herself - died of a massive heart attack, caring for his dad and with just the intro I have, I can see how she could, plus she refused help and had no support group.
How have I changed: I have done a 360 in our relationship. Gone from 'mother', to wife' and now going back to mother! I hate it. I no longer find 'senior moment' jokes funny, especially from my sister where we park at. She keeps bringing up her 'frontal lobe shrinkage', comparing herself (age 70) to Art. She forgets something that is what she brings up as if in some way that makes me feel better. She was joking one day in the car about 'having AD' and I said it wasn't funny. She said yes it is. We gave up two years of traveling (06-08) because I didn't want to see her kill herself caring for her ill husband like Art's mom did. Two years that when over, it was now too late for us. She criticizes me when I blame his actions on the disease - she says things like maybe he has cataracts, maybe he just loves you and wants to be with you (regarding following me everywhere), etc. And then, last weekend when my brother and sister were here, she again was criticizing how since her husband died, I would try to get her out with the living instead of staying in bed hiding from the world. That hurt. I just wanted her to get out of bed, walk around, eat something more than protein bars, get some sunshine, etc. I never asked her to leave the house or join in anything.
Well, you don't need to be HER mother, too; your husband's enough! I remember how very much my great-aunt resented her sister telling her what to do - they lived just a couple of blocks apart and my grandmother was very "controlling."
Have you tried just laying it out flat: this is what bugs me about what you say. I'll stop bugging you if you try to stop bugging me!
(this is speaking as an only child, so I may be way off, Charlotte!)
Charlotte, your wants and dreams do NOT always have to come second. You don't have to be the perfect Mother type caregiver you're describing. Your anger is understandable and your pulling away. You do have some choices even if it seems like you don't. If you choose to care for him, which it sounds like you are going to, you can choose the level of giving you want to do for him. Putting someone else first can become such a habit we don't remember how to do otherwise, but he may not even appreciate or benefit from all of your sacrifices. I'm FINALLY LEARNING THIS and sitll trying to practice what I'm preaching here. I felt too some of that anger from unresolved issues in the marriage, things I thought we had time to work through, were actually in therapy to work through when it became clear he had dementia and neurological issues were actually contributing to some of our problems. But still all those things I was angry about just got filed into a big BOX OF CONTAINED ANGER which you have too. And damn it it is not fair that we can't just tell them how angry we. A friend who went through something similar told me a benefit to her was that she reached some forgiveness with her husband who was an alcoholic when diagnosed. I felt that for awhile for the current and recent history, but those old things will come back and bite you. SO REMEMBER YOU HAVE CHOICES. This may last a long time. You won't make it if you don't care for yourself and start treating yourself to the things you want FIRST maybe FOR A CHANGE. He'll be better off for it. As for your sister, sheezzzzz.....I relate totally....what can anyone say.
Oh yeah. The unresolved issues are what will get you every time! The fact that you recognize that there is no way that they will ever get resolved can just kill you. If you let them.
I am so in awe of those who have ambivalent or negative feelings towards the spouses they are taking care of. It's such a difficult situation even if one is in a compatible relationship; I can't imagine making the sacrifices dementia caregiving entails if I hadn't had such a strong marriage. My hat is off to those of you who are doing this.
I finally was able to put words to the situation with my sister. She is 13 1/2 years older than me. Her oldest son is 3 years younger than me. (my mother had 3 different generations of kids, 7 in all - built in babysitters). I have come to realize I will never be an equal to her. I will always be looked at as more of a daughter than a sister. I have to keep remembering that when I want to get upset cause she seems to not appreciate the sacrifices from our dream we made because we stayed to help her, which we felt God wanted us to. She never asked us and gave us a free place to park in exchange for doing the upkeep of her yard and house while she cared for her husband. I didn't want her to drop dead of a heart attack like Art's mom did. When we came back last winter, I made sure we pay her for the utilities we use so we are costing her little or nothing to park here.
Art and I went to the mall today and played 'glow in the dark' miniature golf for two hours. It started off rough when this family was following behind us. Two of the boys were bouncing off the walls to the point of starting to play before we left a green. Their mom was not watching them and said they were autistic but I think it was more ADHD. I almost told her 'well, he has Alzheimer and can't handle the noise' but didn't. Art was getting agitated from their noise -eventually she took them to the other end of the course (54 holes). Then we started following some guys that were late teens and had a blast with them. They were refreshing in that they did not use any foul language.
Yesterday DH was doing pretty well, so I asked him how he thought this AD journey had changed me. I thought he would say something about me becoming more outspoken or how I’ve managed to take care of everything by myself. He said “You seem like you’re a lot more worried”! Yes, I guess that’s a change, but certainly not what I was looking for!
AD has made me more lonely, isolated and inward. I swallow much of what I think. I can't hold DH accountable for anything he does or says. Today I feel that DH gets most of the support and sympathy and no one understands how weirdly we now live. I always took care of everything including my job, the home, finances, etc. I guess what is changing the most is how much self-control I need to learn to have everyday when I try to be pleasant, calm and positive no matter what he does.
I too was experiencing relationship issues in my marriage for 2 years not knowing that he had FTD. For 23 years I'd been a good wife, had a profession, worked when he didn't want to (REFUSED), supported the household, etc. while he sat at home, let the house fall apart, was obsessed with internet dating and porn and said to me when I threatened to put my profile on MATCH.Com like he did "No one would want a fat, crippled pig". Oh did I mention that I was dealing with physical abuse too? I was convinced that he no longer wanted to be married to me and was exploring options when he received a first diagnosis of acute atrphy of the brain, pre-senile dementia.
It's changed me for the worst - I am angry, less tolerant and generally bitchy.
Yes, FTD has changed everything. I really try to be upbeat and see the best in this situation. I really used to be a happy person, full of fun and life, once upon a time before this disease. After 47 years together, I am sorry to say, resentfulness, numbness and bitterness are the words of the day. Oh, I do hate being this way. Sometimes I have to laugh at DH and his antics but most of the time I feel impatient and frustrated. It has been a long road to this point as we started this journey, unbeknown to me, a long time ago before his dx. Our loving relationship was shattered when I became the whipping boy, everything my fault, his wanting a divorce because I wouldn't submit to his demands. I have endured too much to see the happy and the positive in this journey. I want to feel good about life and laugh again. I just don't know when that will happen...sorry what a downer! M
MMarshall I feel much the same way you do. FTD is a real monster. It is so hard to remember the good after enduring so much of the bad. After all the hell at least I emerged more self confident than I would have if life had been "normal" whatever that is.
MMarshall - hold onto what others that have gone the journey have said: the horrors of this disease will minimize and the happy memories of before will return.
You young ones will have time after this journey is over to build a new life. I'm going to be too old and worn out if I survive. The rocker on the porch is looking better and better. Woe is me. How is that for looking ahead?
Bama--Your comment about building a new life is what gets me through this. I'm 60--caregiving DH 5 yrs so far--trying like heck not to wear out too soon!
Wow, sometimes I give thought to this subject, but haven't really put it into words, into any order really, and certainly havent really acted on it.......Depending on how I end up in this mess financially, and how (and in reality, how long John lasts and if there are no immediate crisis), I'd like to go somewhere....to the west coast of Florida or Sannibel? I'd like to spend some time with my parents first. I'd like to go to school, train ponies, teach riding lessons and work in my studio most of the winter time. I'd like to get out of this place sometimes and have some adult time with a special someone.....no commitments, don't know if I have that in me, but I sure do miss a partner that I could share things with ...... and have some fun and laughter with. I wouldn't want to talk about sickness and disease ever again, God willing. I can deal with arthritis, a broken bone or cracked rib here and there along the way.....but no debilitating brain diseases again, please. I'll have my next partner thoroughly "vetted", as he should ME.......and a background search by a reputable PI firm wouldn't hurt, either.
Stunt girl, today is the day to take the first step toward your future. Decide what you really want to do and go for it. Time has a way of passing too quickly. At 81, I know that I can only try to enjoy the good things I have and indure the bad things. I am not always at the "woe is me" stage.
I don't look to a future alone when I am still 'young'. I am only 56, but my FIL has been going over 25 years with this disease, so my hb could conceivably do it too. He basically has not known anyone, been a walking empty shell, for the last 10, but is still doing well healthwise except his mind.
I know a lot of us of a certain age have said, upon finding an interesting job in our forties or fifties, that we finally figured out what we wanted to do when we grow up! For me, adopting our third child, my beloved daughter, six years after her brother, gave me the breathing room I needed before I went to work full time. And I did, somewhere around age 48, find my niche in computers.
But my real hitting the groove was when I started travelling on my own around age 55. Although I would join groups for part of a trip (Earthwatches or visiting friends) the emancipation of being still strong and healthy enough to get around on my own, and dumb enough not to be afraid, and old enough not to be a sexual object, gave me more pleasure and fulfillment than anything I did before or since, including working or having children.
There truly is life after 40 - 50 - 60 - 70! Today, at 73, and even with a bum knee, I'd be out the door in a flash and finding a nice cheap pension to sleep in somewhere if I could.
Looking on the good side: Like so many of you, I have become much more self-reliant and I have learned to make decisions. What I discovered was that I COULD make them, once I could stop worrying about what DH would say. I had to check everything with him.
Now he no longer notices, or, since he forgets so much, he probably assumes he's forgotten when we made the decision to have the driveway repaved, have the mole-catcher come in (he had been fighting that one for years and our lawn looked like a prairie-dog town), etc.
I've just realized that I've also become more talkative in company. In foursomes I often could not get a word in edgewise. When I wanted to tell a story, DH would have a little different version (increasingly these became incorrect, an early sign if I had been looking for it) or would correct me so I was often quiet unless I could start a one-on-one conversation with someone. Now our friends comment that I do all the talking. DH has grown much quieter.
Briegull, good for you (didn't see your post until after I had posted the above). Travelling on my own is a secret ambition that I have for "after" AD. I'd love to go on an opera trip where they take you to Vienna or somewhere and arrange several operas and concerts.
A few years back I did the eurail thing and went to Vienna (actually to visit an old boyfriend who turned out to be more Nazi than Hitler, who was also Austrian).. I said I'd like to go to the opera comique or whatever, to see a Strauss operetta. He said, oh, of course you can't get tickets just walking up like THAT. But I tried. Got a box seat. And enjoyed it very much, including the visiting with my box-mates. In '05 I was in Berlin and visiting with a German friend who had happily moved over from East to West. She said you must go to the symphony. This on top of our having done sightseeing the ENTIRE day, and it was a warm spring day. She marched up to the box office and said, I have an important visitor here who will only be here this one evening, can you possibly find us a couple of seats? And they did, and I was in the center section, amidst very fancy-dressed people, watching Cecelia Bartoli in a concert version of Cosi Fan Tutti, Barienbohm conducting. I sorta shrunk into my seat at intermission. But the concert was great! And the next day we went back, to the Museum of Ancient Instruments, where there was a concert being performed on ancient instruments, free. Fascinating!
But you know, Jeanette, I love being in European cities alone because there are always (most seasons) concerts in churches. Granted, it's often second-rate performances of Vivaldi's Four Seasons, but they are great because they're at the time of day that someone alone misses a companion - maybe 6 to 8 at night. So St. Martin's in the Field in London. A great one in Venice, I forget where. One in Rome. Have a good lunch in a good restaurant, sightsee a few hours, maybe stop at a wine-bar for a drink, go to the concert, pick up a little sausage or patisserie to take back to the pension and call it a night.
How have I changed?......I've been thinking about that since my last post and reading other's. I BELIEVE I've become more self-aware and self-reliant, certainly. I've become somewhat bitter about my future....plans we ALL have made have come undone. I've had to face the fact that John never made any plans for the "what ifs" in life....not even a life insurance policy. His only suggestion in the past when I would ask was "you should find another man". Unless one or two of us here is independently wealthy and just MADE of 'old money', like you all, I'm uncertain of my financial future. I've had to give serious thought to "what I want to be when I grow up", having allowed myself to be "taken care of" for all my adult life. So, I'm looking into how to get an education. And, for the first time today, when I visited John in the hospital, I couldn't find the energy to rouse him and make conversation of any sort, however brief. I just sat and read my Dean Koontz novel and watched him sleep for hours. AD has made me ACCEPT, although I still kick and scream...and cry a LOT. And, I think my heart is empty, or at least quite walled up so nothing shows up in the outside world.
This dementia journey has made me less patient, more disagreeable, less easy-going, more resentful, etc. I can think of nothing positive. While I love this board and all of you, I believe spending so much time here has made me focus too much on the dementia part of my life to the exclusion of everything else. I am going to make an effort to not come here everyday, to try and fill my hours with other things as I did before I discovered this wonderful place.
I agree with you. I spend too much time reading posts and feeling so sorry for everyone who is living this kind of life. One thing I have learned is tht I am not the only person who has such horrible (that's the nicest thing I can say) step children who are selfish, rude and cruel... I 've read thoughts that I have had, but never wrote down, and understand that I'm not the only person who feels that fate let her down.
Like Weejun, I really should try to fill MY hours with other things ... instead of thinking Alzheimer's all day long.
Nancy, that is why I spend so much time on GoodReads. My daughter pushed me until I went there and she was right. Right for me, by the way; not necessarily for everyone. I've been doing other forums for other interests as long as I've been here and even before. I don't seem to want to actually DO crafts, but I still want to look at stuff and read about it. Etc.
I think it's natural that at first when we discover the board, we want to see how everyone's doing, learn everyone's personalities. But as time goes on we drop back, and new ones come.. Unfortunately, then when someone doesn't post for awhile, we start worrying about them. I have other interests, and will continue to, as you all know. This is a constant in all our lives, and an important one. But the best thing we can all do for ourselves is to find other avenues of interest.
BRIEGULL: I long to have your fearless sense of adventure. Like Charlotte, even though I'm now 58 I can't see beyond dementia to another life. I love being in new places on my own UNTIL it comes to meal time. I just hate going into a nice restaurant alone. I recently met a friend in Kansas City and was alone on a Saturday night at dinnertime in the Plaza area which is filled with restaurants. I had a great time window shopping and was starving and so wanted a really nice meal but when I peeked into a couple of the better restaurants they were packed with couples and groups and no singles I could see and I just couldn't get up my nerve to go in and face eating alone. I ended up getting semi-fast food take out and ate dinner in front of tv at my hotel. How do you or others handle the dining alone part of traveling?
I've never had any trouble eating alone. Maybe it was because my husband worked such different hours and I was alone alot. I've gone to shows by myself, out to eat, museums. It never bothered me.
I enjoy my own company and don't mind dining alone. Sometimes I'll take a book with me, other times I'll just people-watch and savor the food. I would tell you to try to cultivate the ability to do this -- it can be very liberating.
In my "former life", I spoke at seminars, and often found myself in restaurants alone at night. When the Hostess would ask, "ONLY ONE?????", I'd say yes, and please seat me toward the front. Otherwise, I wase doomed to a back table beside the tea cart or kitchen door.
I prefer eating with someone, but would not deny myself a lovely "hot" dinner if I was alone. Was that really ME?
I'm fine going ywhere, museums, whatever, meals are no problem for me especially at casual places. But fancy restaurants at dinner time - it terrifies me - I don't know why. I enjoy being alone much of the time and doing what I want at my own pace so if I could just make this one thing easier to do. I hate giving up fine dining as I'm such a foodie.
I love these posts about travelling (and dining) alone. It's definitely going to be my "dream" for "after." Briegull, your European adventures sound great. I had a wonderful week in London alone once, and a couple days in Pittsburg when my brother got married, many years ago. Other than that I always been with DH. I would also be willing to try a bus tour alone; we've been on those where the singles have done well. I too think I should spend less time here on these boards. It is addictive and I have been neglecting lots of stuff. Interestingly, dh has pretty well accepted it. He sits down at his desk, just at a right angle to me, never turns his computer on, looks out the window and watches the birds, etc. or looks at magazines and newspapers and cuts stuff out of them, which he pastes on printer paper. He goes through lots of glue sticks.
This is a really interesting thread...I have changed so much in the three years since Ian started to show symptoms...even before we had a diagnosis I had started to take care of all the household bills.... Ian forgot how to log into the bank account.... and if we had a trip planned , if Ian made the booking he would do it all wrong, wrong dates, wrong destination, wrong times....!
I've always been independent and always ran my own business, so that side of it isn't alien...What I've found lately, is that I long for someone to share at least some of the responsibility, because doing everything, all of the time is draining and I do feel quite frustrated by it at times. On occasion it makes me panic that I'm not strong enough and that I can't cope with this without some form or respite.
We should be on vacation right now, on a Mediterranean cruise, but three weeks ago, I completely panicked and cancelled it. I panicked because I knew I would have to do all of the packing, all of the organising, all the currency, the transportation of myself, ian and my daughter from our home to the ship. It all seemed too much and I told the doctor who wrote to the insurance company explaining that Ian's deteriorating AD symptoms meant he wasn't able to travel... This was really good of the doc as looking back, it was actually me who wasn't fit, because I feel emotionally and physically drained by the on-going deterioration and no break...
As you will all know, it's not just the physical drain of being the strong one, and the organised one all the time, but the relentless emotional drain of watching someone you love dearly slip away.
Two days ago, after speaking with some of my close friends, they decided that what I really needed was a break, and that cancelling the cruise was the totally the wrong thing to do (although they did understand why I'd done it...but they said I should have come to them for help)...SO, they helped me to re-book another trip, for a week in a hotel in Sorrento....and in two weeks time I'm going with Kate )my daughter) and Ian. I'm even looking forward to it, even though it will be hard if Ian has a funny episode while we're away.
I hate the self doubt that this illness has created in me....I've always been very strong and a coper. This disease so far has challenged my belief in my ability to cope and I hate that.
Sorrento should be neat! It is very touristy, of course, but it is so extraordinarily beautiful - just don't rent a car and ask your husband to drive the Amalfi drive! When I was there a couple of years ago with three other women from the Earthwatch research project we were doing in the National Library in Rome, we had a three day weekend and went down. Take the ferry over to Capri and if you're all in good physical shape walk up to Tiberius' villa and stop on the way back at a little tavern and have prosecco. People really can be kind if you have problems. Just be careful going through Naples - if there's some way to get scammed there, you will be!
Re eating alone: Okay, we're agreed that lunchtimes are basically no problem. Take a book (or travelling now, an ebook which will make the waiters curious). Nighttimes, yes, they CAN be worrisome. For one thing, if you leave a restaurant late, alone, you're in a city late alone and that can be problematic. But I've done it many times, from Prague to Bangkok and many places in between. For twenty one years I went to New York about six times a year, because I arranged a bus to take people from the vicinity of Brown University to go down on a one-day trip. Sometimes I'd arrange to meet friends for dinner, but quite often I dined alone. Last spring, the first one that someone else was running the trips and my first trip in a year, I decided to treat myself and (I think I've mentioned this on the board before) went to Petrossians, which is a very fancy, storied restaurant near the Plaza Hotel. First, I went early: they opened at I think five thirty; I was there then. I asked to be seated to the back - I like to watch the people. And I acknowledged to the maitre d' that I was alone, I was treating myself.. and I ordered, shall we say, not the blue plate special. A little caviar and pate sampling (what they're famous for); I think duck for the main course. The waiters could not have been nicer or more accomodating. At the banquette setting next to mine a couple of women were placed and we got to talking very quickly and all enjoyed ourselves immensely.
And all of these things are what I have routinely done in the past (well, not usually a splurge). Waiters tend to seat singles near one another, and -here's one of the delights of travelling alone- you can and do strike up conversations with others like yourself. Indeed, one of the most interesting evenings I've had was spent in the company of a woman who, like I, was touring Sukothai in Thailand alone. She was from Holland. We told travel stories to each other for hours.
If you stay in bed-and-breakfast or pension type places, the concierge or owner seems always prepared to recommend places that are suitable to visit alone. I've never had trouble relating to service people - the waiters or the concierges - or other people on whatever means of transportation I'm travelling on - and the number of people who have reacted back to me with kindness or pleasure are multitudes, my happiest memories.
Who was it here that mentioned one of my favorite quotes "you are a walk-on in everyone else's life". Other people's lives are fascinating (can't we all admit we're fascinated by each others' soap operas here?) and it's fun to observe from a distance. It's NOT fun to be demanding "ugly Americans" who insist that people in their own lands accommodate OUR needs instead of trying to adapt to theirs.
And - I don't know if this is in the quote thread or not, but it has served me well: "I have always depended on the kindness of strangers.." (t. williams)
Lynne, do enjoy your stay in Sorrento. we honeymooned at the La Sireneuse hotel. its fabulous. and did go over to Capri on the transportation boats. lovely views romantic and heavenly shopping. the packing and travel arranging is draining but you will be glad you made the trip, your daughter will have a great time, let us know how it goes. xxx fingers your Ian does well. Divvi