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    • CommentAuthorterry*
    • CommentTimeMay 23rd 2010
     
    I've been reading some of the posts on placement, ALF, NHs, and when to place. I haven't yet sought out any places although I've started making lists. Joan (I think) mentioned statistics show most place a year too late. I wonder if it is because they don't care about after? I don't. I hear recommendations that we not wear ourselves out or harm our own health or put our future in jeopardy. But I don't care about my future. I feel my life is tied to his. I feel this is a disease that has happened to both of us and have told him many times this is a disease we both have so that he won't feel guilty. I can barely remember my life before and don't care about it anymore. I do very much want to complete what feels like my last job in this life which is to get us through this journey. There's nothing I want to do "after" this is over but I very much want to create a situation in which I'm not too miserable to keep going with him and so far I'm okay. Depressed, not much energy, but okay, in a nice setting, birds out my window and working on the garden.

    I was very influenced by the book The Leisure Seeker. They took an RV trip and at the end she chose to have that be the end of their journey. I'm hoping that will come about more naturally but I relate to it being like that as opposed to scrambling to create another life for myself. So, I think that's why I don't keep on top of my own health care as it would relate to the future because I'm not motivated in any way to do so.

    Am I the only one who feels like this? In the very beginning I had thoughts of both of us using all our money and traveling the world, and exit into an exotic river or something. I recently read that Sharon and Ozzy Ozborne have made plans that in the event either one of them were diagnosed with AD they would go to a clinic in Switzerland for euthanasea. She had cared for her AD father and said they would not live through it and had given it considerable thought. That feels a bit extreme for me but I understand it.
    • CommentAuthorCharlotte
    • CommentTimeMay 23rd 2010
     
    Terry, you are not alone. Since my sister's stroke the end of January my life has had so much added stress. I have two important people in my life with short term memory. My hb never remembers but my sister will later but the space in between her remembering can be quite frustrating and have resulted in some ugly arguments. I am not as tolerant of her memory problems as I am hb's. I have concluded mostly that I am not ready to have my sister this way. Yes, she is 71 but I think of that as still young in many ways. Then my FIL is going downhill, this is the second time in the last 2 months they thought the end was near - do we go back or not go back? And my daughter angry because we won't bail her out of her bad choices again.

    There are days I flash back to 'The Leisure Seeker' and think how easy it would be to do that since I live in an RV. But, I do not have cancer and am dying like the wife in the book. I also have gone through these suicide scenarios since my childhood. I have always been plagued by them thinking of ways to do it. Two things always keep me from doing anything: what if I fail and I do not want to stand before my God and explain why I did not trust Him enough to live.

    As for the future - I never left him in 1985 after his affair because I did not have the confidence to be by myself and support 2 children. Yes, I had worked most of my adult life but only for low wages, not enough to support a family on. I now wonder if I will be able to when he dies. I have 5 years before I can get early SS (if it still exist). I have been out of the work force now for 1 1/2 years and jobs are hard to come by especially for someone over 50, fat and with obsolete skills. How will it be when I am in my 60s? Fear of how I will survive, will I be able to keep the life insurance paid until then, and it goes on. I know we all go thru similar thinking of how will I survive financially after he is gone.

    As for my health, I don't have medical insurance but do get lab work done thru a naturopath ordering them. I have a regiment of supplements I take which keep my blood work in check. I too really have no big desire. But, I do want to go quickly not suffer a lingering disease - a motive to keep healthier. I have no friends - seems everyone I thought were friends turned on me when they could get no more from me. When we were attending church he was always active in ushering but I never found a place. I have always felt I was born 100 years too soon. Believe it or not, one of my most enjoyable times was when we were homeless due his job loss after his employer found out he had been having an affair with a teenager. We camped in a county park, lived in tents, food came from the food bank and donations from a local small church, I washed our laundry by hand and hung on the canopy around the table and cooked many of our meals on the campfire to save on propane. Believe it or not I enjoyed it - until it got cold and rained all the time. It was hard on the kids then.
  1.  
    Charlotte andTerri....I hear you. I talk a LOT about having a life 'AFTER'. I can't even calculate when that may be. John keeps rebounding. I keep saying I'm NOT going back there to see him in the nursing home, just too much to take....and that I can't WAIT for all this to be OVER. I stuff all my emotions behind a cement wall. The only things that seem to make me insane and hurt me are the kids. Fine. Making progress there, somewhat. I see one or two gentlemen for dinner and a movie on occasion and make jokes about wanting a relationship one day. In truth, I DO NOT wish to be alone for the rest of my life and wish I could be left to get on with it all. But, what if there's just been too much emotional damage done? What if I'm never going to be able to relate to anyone normally ever again without the spectre of "what if" (health concerns) looming overhead? I would want to be healthy both mentally and physically for someone else. TRuthfully, I go into those "internet dating sites" to see whats out there and it scares the hell out of me. I'm intimidated by men younger than me and my same age....have always liked men much older (John's 81 and I'm 55), so....DANGER, DANGER! Not a "gold-digger", just appreciative of maturity and an older man's appreciation of my charms. Yes, help. So, I feel hopeless. Need to be left alone, I guess, for my own benefit and to make my own way. Frankly, it makes me understand my friends who are lesbians. (no joke) I have no one to support except for horses, cattle, hound dogs, other pets (later two are my real family). I have several trusted neighbors who help me out in so many ways and I still am blessed with my parents. For the meantime. My daughter's love is a come and go thing which I don't understand. Life is a limbo experience at this point in time. Ask me tomorrow and I may feel like I have the world by the tail. The next day, I may not be talking.....at all. (yes, on meds)

    I hope we each come out the other side of this. Intact. I feel like a little "road work" will need to be done (even physically...some done already!), but so far, the damage doesn't feel terminal.......today. God help us all have the strength to come out the other side. With love.....and I need lots of it......Jen
  2.  
    Now you've intrigued me. I just downloaded The Leisure Seeker onto my Kindle. Reading the Amazon synopsis of the story, and inferring the ending from the above comments, I can say with a fair dose of honesty that I would likely feel exactly that way if this process had occurred at a time when I felt like I'd more or less completed my life to my satisfaction, and I were a good bit older. In fact, I have very similar fantasies regarding how I'd handle an AD Dx of my own...something like getting a sailboat and a big bottle of sleeping pills and sailing off into the sunset.

    As it happened instead, we're stage 5ish (sometimes it's hard to plot the PCA variant of AD on the 7 stage scale) and I'm 48ish, and I don't feel quite ready to check out yet. This is not to say I don't have my moments...we all do in this game...but that doesn't feel like the correct game move, karmically speaking.

    But, as for "AFTER"...well, for a while there I was definitely daydreaming about a future romantic entanglement. The loss of mine has been the worst deprivation I've known, and I just wanted some love to fill the void. Now, a few years down the road, that's a distant enough memory that I'm not sure I really care anymore. Not sure I want to bother.

    But, I figure I'm going to have to discover some point and purpose, even if I have to make it up. (I've written fiction, I can fake it.)
  3.  
    emily... I've LIVED fiction... I can fake it!!! We become great actors!
    • CommentAuthorckkgram
    • CommentTimeMay 23rd 2010
     
    At 59, I feel I'm old and possibly there will be no after. I wanted to do things with my husband- now this. Late Stage 6. I have cried and cried, grieved all week,about placing him, but after this weekend, being isolated, up all night with those horrible hallucinations, toilet, toilet, toilet, (he does not even know what the toilet is,) I cannot do this much longer. I want an after. Life is in limbo now- going from day to day. I have looked and looked for ALZ NH and they are far and few. I have waited for a regular NH to give their ok. They have the MD orders, History and Physical, and they are still dragging their feet. The prolonging of their decision is killing me. Aren't we all so weary and tired of this dreadful disease? STUNT GIRL, I read your posts and I am so sorry of what you have gone through. Alzheimers is so life consuming. I get so bored, I load my husband in the car and just drive aimlessly, then back home. I hope there is an after for all of us. We must make an after for ourselves.
  4.  
    All... my friends named me "Stunt Girl" from a very long time ago.....all my mishaps on board horses from all disciplines, from racing days to fox-hunting, training, everyday boo-boos. NOW, its all the flips I have to turn, performing for the Alzheimers parade of life!!! I want it to STOP!
  5.  
    I am in Iceland..in Reykjavik after being up in the West Fjords since the 15th. It is almost 2 AM and it is just dusk out..yep..we are close to the midnight sun days of mid June when the sun just crosses the horizon but does not set. It is a wonderful place to be. I was up here helping my middle girl and her hubby get their summer homes ready for rental in Sudavik. There are 5 homes and a guest house. WE worked our bunnys off and things look terrific. As I was working on them ( I cleaned 3 kitchens to mention just a few of the things...) I began to wonder if I might one day own a summer home up here in Iceland. If you ever want to come to a place which is tranquil, Iceland is the place to come. The people are warm and helpful. English is widely spoken and they love to help you pronounce words...like this volcano..I just called it EFJ and they thought that was pretty clever even though I actually can prononce it in Icelandic.
    My DH has been here and loved it. With his geology degree he was charmed by the lava formations etc. I have now made 3 trips without him. But all our Icelandic friends ask about him..so he is warmly remembered..
    Who knows what the after might mean..but I am, at this point, in no hurry for that time. Maybe I'll end up summering in Iceland..I love the long hours of daylight.
    I'll be back in the states on Tuesday next and back to reality on the 29th.
    Bless Bless ( means bye bye in Icelandic)
  6.  
    Hi Mimi--I recently discovered my ancestry is Icelandic, and you have made me even more intrigued to go. Maybe that's an "after" for me. Or maybe a "during." Who knows?
    • CommentAuthorterry*
    • CommentTimeMay 23rd 2010
     
    Emily, pardon me everyone for being so frank, but at 48 I was pretty darned hot. First thing I thought when I read your post was that if this had happened to me then I'd probably be seriously thinking about an affair. Not so now at 58. No interest.

    The little wisdom I can offer to everyone is if you have DESIRES live! I just don't. It's a blessing if you still have things that excite you and that you yearn to do. I always enjoyed anticipation as much as anything. As recently as 2006 I was in great shape and fun and lead what some would call a pretty exciting and fulfilling life with the exception of DH's increasing symptoms we didn't understand. But I don't relate to that person who was me anymore. I don't want to be her again and I'm not sure why. And as much as I know all the literature says not to lose yourself I feel my path is now as caregiver and partner in this mutual AD journey.

    Since we moved after the DX nobody knows the me who was so I am now whatever....not sure...reclusive mostly but have made a couple close friends here who drag me out. I had hopes pinned on family who live a couple hours away, but that broke my heart and I think my heart is now just exhausted.

    My biggest and strongest connection is to nature and the times I feel completely whole is when I am out in it. I do have one very strong desire and that is to landscape this piece of land. I never in my wildest dreams would have imagined myself as one who could sit and watch the birds for as long a stretch as I can get uninterrupted by pups for DH. Somehow I knew when we moved to this little piece of Paradise in the Ozarks that nature would be my salvation and would sustain me through this journey. I purposely set up a situation in which I would be content to be alone in the house with DH all day unable to get away and I think I have achieved that to some extent.

    Charlotte, I understand. I'm sorry we didn't get to meet while we were in Portland.
  7.  
    Well, my prime directive regarding even entertaining the notion of having another "friend" is, first, do no harm. And it's too early. Harm would be done. Whether I retain any hotness externally or interest internally when the risk of feelings being hurt is past...yet to be seen.
    •  
      CommentAuthorSusan L*
    • CommentTimeMay 24th 2010
     
    The "after" is very confusing. I find my self very lonely. Yet emotions are still so raw, I can't contemplate the future. Three months of "after" and I think I will want another relationship. I'm 54, hopefully will live a long, healthy life, and I think that I deserve some happiness and a good man in my life. This is much different than when Jim was alive. I was lonely, frustrated, neglected my health, weight etc. Now I'm dieting, losing weight, beginning to feel better about myself and a possible future. I just can't imagine dating. Could I get a mail order guy, lol! List my requirements and have one sent to me when I'm ready? :o)
  8.  
    I think I want one that will come here early in the morning, has the day of work planned already, brings his own lunch and toolbag...gets a lot done and then goes home.......says just the right, nice things....leaves me hangin'....maybe I'd fall in love! Fall in love. Such a simple thing to hope for. Seems so unattainable. But I DO want that one day! Maybe he's just up the road and I haven't met him yet.
    • CommentAuthorterry*
    • CommentTimeMay 24th 2010
     
    Susan, have you checked out the internet dating sites like match.com? More and more people are meeting and marrying through them. (a little online browsing might be entertaining) A local woman in town who owns one of the many B&Bs just married a man she met on one. She must be in her late 60s. I was told she put no geographical restrictions in her search and met interesting men from all over. I'm glad to hear you're getting in good health and feeling better.
    •  
      CommentAuthorSusan L*
    • CommentTimeMay 24th 2010
     
    Terry, I'm no where near ready for a dating site, it has only been 11 weeks since my "after". Coincidentally, Jim and I met on Match.com :o)
    • CommentAuthorterry*
    • CommentTimeMay 24th 2010
     
    just research Susan. I didn't realize you and Jim had met on match.com. When you're ready sounds like you'll know what to do! 11 weeks...thought it had been longer. I no longer have any concept of time. My gorgeous grandson was born a few weeks ago and his parents insist he's two years old.
    • CommentAuthormaryd
    • CommentTimeMay 25th 2010
     
    I used to think I would have a life of my own after AD. Now, I just want to survive it.
  9.  
    Hey friends, I am IN the 'after', and I don't care about it. It's no picnic, and I don't care what happens from here on. So until something good happens or I expire, I'm going to work on my yard landscaping until it's done. I'm going to be the bitter old hermit that lives up the street, that is always working in his front yard. Except when it rains, that is. Better luck to ya'll.
    • CommentAuthortherrja*
    • CommentTimeMay 25th 2010
     
    I am 52 years old and am now looking forward to there being an after. I placed my husband 3 years ago and it was just within the last year or so that I was able to think about and accept an after. Before that I was too physically and emotionally worn out to even deal with the idea. It would be nice if there is someone in my future to share the after with but if not, life is still worth living and doing things that I enjoy.

    With that said, I find that I am beginning to deal with some of the devastating affects that his having the disease had on me. Time is a great healer if we let it. We have to make the first choice to live and hopefully make a second choice to enjoy what we can of life.
    • CommentAuthorJan K
    • CommentTimeMay 25th 2010
     
    I guess I now fit in that classification of no longer caring about "after". I feel like I've already lost nearly everything that makes life worth living. Once I am completely alone in life, why would I want to prolong that part of living? DH and I have talked many times about how, when he gets to a certain stage in this disease, he doesn't want to do anything to prolong his life. That's how I feel about that "after" stage now.

    Of course, it's possible that I might feel somewhat different after a rest of several months. But even well-rested, I will still have already lost my husband of over four decades, my own health, our life savings, and the care and concern of both our families. That doesn't leave a whole lot to start a new life with. Add to that a spirit just absolutely crushed by this whole situation, and the future looks pretty grim.

    I just thought I was feeling down a couple of weeks ago. Then last week I had to have surgery—an experience which turned out to be like something out of the Spanish Inquisition. Now I'm home barely able to move, with a husband who sleeps all day and all night. I feel like I need to call adult protective services because somebody is not taking good care of me!

    Maybe if you have a family who cares, or decent health, or sufficient finances—something to build on--a decent future is possible. Take away all these ingredients, and it's hard to want to keep going.
    • CommentAuthorbriegull*
    • CommentTimeMay 25th 2010
     
    Jan, seriously, talk to an elderlaw lawyer. YOU DO NOT HAVE TO LOSE YOUR LIFE SAVINGS!! If I had not seen one I would have thought that to be true. It is not.
    • CommentAuthorAdmin
    • CommentTimeMay 26th 2010
     
    This thread is very distressing to me. Please check the home page tomorrow (Thursday) for a blog on this subject.

    joang
  10.  
    joang...about loosing life savings or plans for a future (with or without another significant)? The comments about the 'dating sites' are interesting. I lately pasted my little bio and pic on one. Gotta say, I don't think I'm unattractive at all. I DO know I'm no young 'chick'. I know I have intelligence and other good things to offer someone, even as just a companion right now. But....I can tell ya, there are some awful, nasty and selfish people out there....not to mention nutty. There was a fella I wrote a note to not long ago, just to compliment him on his clever bio...and the fact that he was a farmer. He was MUCH too far away to have any relationship with (keep in mind that I'm 55, he is 52). I got a note back telling me that yes, we were very far apart and that I was much too old for him. "I'm looking for someone a lot younger than you". ahem. I wrote back (as reserved as I could possibly remain) that he needs instruction in how to speak to a woman...any woman (by the way, he's never been married). First, I said, NEVER say anything negative about a woman's age. Suggested he could have said simply that we live too far apart. Wished him luck in his search. Today, I got the nastiest note telling me that I am ugly. I am old. Called me Granny, on and on. A woman hater, I think. WOW. Gonna post the headshot I used on my facebook page. DO I LOOK THAT BAD????? I have all my own frontal body parts and teeth, too. hmmmm. Guess that's what that "block sender" button is for, huh?!
    •  
      CommentAuthorJeanetteB
    • CommentTimeMay 26th 2010
     
    There are some wierdos out there. Don't let them get to you!
  11.  
    JeanetteB, I resemble that remark! :(
  12.  
    Joan, I am glad you are addressing this issue. It is really sad to read the posts on this thread.
    • CommentAuthortherrja*
    • CommentTimeMay 26th 2010
     
    A friend of mine lost her daughter to a car accident several years ago. She joined a support group. The first group she joined she described as a "death" group. Her definition of this was people who stayed in the moment of loss and never moved on. That group did not work out too well for her so she left it and joined another group. The second one was a better fit for her as their focus was about moving on with their lives. I am very glad that she shared her experience with me, it kind of woke me up and made me think about not letting the disease take me too and making a choice to live and find a life of some kind for myself afterwards.

    There are a lot of things about the disease that we don't really have a choice about. We do have a choice about how we let it affect us in the long term and for our own futures.
  13.  
    The way people handle their grief and the healing process is different for everyone, and is a reflection of their personality, their life experiences, including the health of their marriage, and the extended family and financial situation in which they find themselves. Some people are ready to move on in a relatively short time and are positive about what they now want to do, whereas others may take up to two years to even consider what to do next. Time is the major contributor to healing, and beyond that are the factors of finances, and personality as in being a type A or B, and being an introvert or extrovert. So no one should be criticized or pitied for feeling the loss for a long time, but understood and left alone but not abandoned.
    •  
      CommentAuthorJeanetteB
    • CommentTimeMay 26th 2010
     
    I'm sure you're right, Joe. Well put.
  14.  
    Joe, you are exactly right. I am not there yet, but others are really ok. I hate it when someone tells me to just "get over it". GET OVER IT????????????? All I can say is "Someday, unfortunately, you will sadly suffer a loss like mine.....and I hope when that happens, you'll think of me and understand how I felt back then."

    I've been told to "get a job", "join a club", "volunteer"... and I will, someday. After I can get through a day without tears.
    •  
      CommentAuthorSusan L*
    • CommentTimeMay 26th 2010
     
    A day without tears, now there's a new concept. Joe, it's ok to cry and get up and out.
    •  
      CommentAuthorSusan L*
    • CommentTimeMay 26th 2010
     
    Pull the shades down on the sun
    Don't want to see the morning break to another day
    I don't have the strength to face

    Close the door and keep it shut
    Lord this ache is just too much for me to take
    How do I begin to pray

    My way back to some kind of peace of mind
    But then I hear love whispering through the darkest of times

    CHORUS
    You'll get through this
    You'll break new ground
    When you're lost within your weakness
    Hope is waiting to be found
    You'll get through this
    No matter what it takes
    I believe in you for heaven's sake
    You'll get through this

    Verse 2
    When doubt starts tearing it
    The faith deep in you don't be afraid
    Just remember what I say
    Nothing formed against you will succeed
    As long as your hearts turn to me

    CHORUS
    You'll get through this
    You'll break new ground
    When you're lost within your weakness
    Hope is waiting to be found
    You'll get through this
    No matter what it takes
    I believe in you for heaven's sake
    You'll get through this

    BRIDGE
    Nothing formed against ya will succeed
    As long as your hearts turn to me

    CHORUS
    You'll get through this
    You'll break new ground
    When you're lost within your weakness
    Hope is waiting to be found
    You'll get through this
    No matter what it takes
    I believe in you for heaven's sake
    You'll get through this (Martina McBride)
  15.  
    Bill had mentored little kids in the school system. I feel I stepped in for him when I signed up for the program, Bill died on a Wednesday-the day I mentor. When the next Wednesday came around I really didn't want to go to school=but I did it in Bill's honor. Very happy that I did go. Teacher asked me how I was doing today-I teared up. She gave me a big hug and told me she prayed for me when she went to church. I really felt good about being there today. Next Wednesday I know I will have to force myself to go-but I will do it. One foot in front of the other.
    • CommentAuthorterry*
    • CommentTimeMay 26th 2010
     
    Stuntgirl: My intention in my initial post was never as you wrote: "about loosing life savings or plans for a future (with or without another significant)? The comments about the 'dating sites' are interesting."

    My subject was one which I've been thinking about for many months which is simply that I find myself not caring about AFTER and sense so many people had been writing about Bucket Lists and what they wanted to do AFTER, I wondered if I was alone in my feelings.

    I am so grateful for the responses from those who shared their feelings. I wish I didn't feel the way I do and I pray that those of us who do feel this way now will find a way to begin the "caring about a future for ourselves." I don't want to feel this way and I have not given up on hoping that will change.

    Joan, I hope this is not problematic opening up this topic, because it has helped tremendously to know that I'm not alone in feeling like this as I was beginning to worry for my sanity.
  16.  
    terry...I do understand what you've been saying. As for me (if you can't see it), my emotions are all over the place from one day or week into another. My e-mail is posted somewhere on here if you or anyone else needs to talk. Welcome to hear from anyone. As a matter of fact, I've got new equipment here and the store didn't transfer my address book! Im lost without it (the reason some people haven't heard from me). I've made my own life over the years that didn't include anyone else....especially John. He never had any interests we could share. Now, its apparent he's been ill for a very long time. I just didn't realize. Sometimes its pretty dark around here. But, most of the time, even when I'm fairly grim, I hope and plan in my mind to have a future .... a real one.... and share it with someone else. Jen
    • CommentAuthorAdmin
    • CommentTimeMay 27th 2010
     
    Terry,

    No, it wasn't a problem. I am always open for good, honest discussion as long as it is respectful and thought provoking. My thoughts on the matter will be in today's blog - as soon as I get it written - hopefully before noon. I hope my blog provides hope for you and others who do not care about "after".

    joang
    • CommentAuthorAdmin
    • CommentTimeMay 27th 2010
     
    My blog on this subject is now up on the home page - www.thealzheimerspouse.com. I invite you to read it and comment here. Thank you.

    joang
  17.  
    I have been quiet on this topic, because it is in direct contrast to my "AFTER" topic on my bucket list. I believe that a lot of you here have no idea WHY I even put that topic forward.

    Texas Joe said it beautifully:

    "The way people handle their grief and the healing process is different for everyone, and is a reflection of their personality, their life experiences, including the health of their marriage, and the extended family and financial situation in which they find themselves. Some people are ready to move on in a relatively short time and are positive about what they now want to do, whereas others may take up to two years to even consider what to do next. Time is the major contributor to healing, and beyond that are the factors of finances, and personality as in being a type A or B, and being an introvert or extrovert. So no one should be criticized or pitied for feeling the loss for a long time, but understood and left alone but not abandoned."


    My husband and I have been married, and best friends and lovers for 49 years in August. We have had a wonderful marriage. He is the other half of me. We married when I was 18, a year after graduating from high school, and finishing my first year of college. He is four years older than I. We did everything together, and these last three years of "separation" due to AD taking his mind and his voice, have been lonely. To survive it, I have researched AD until I was blue in the face. Based upon my husband's actions, I learned to judge "how old" he was, and to find things to entertain him with at the various ages. He is now an infant, and it is all I can do to look at him and not cry.

    HOWEVER, I was taught that you have to make choices in life. And, those choices determine the road you will travel. You can always make a U turn or two and get back on track. IT IS YOUR CHOICE WHAT YOUR LIFE WILL BE AND NO ONE ELSE'S. Excuse me for yelling. I want to hug you all and shake and hug a few of you. We all have been granted our lives on this planet, and though we love our spouses dearly, we must appreciate what God has given US. LIFE. WE do not have AD, our spouses do. We still love them and will love them the rest of our lives.

    One dear friend said that she is remembering all of the wonderful times that they shared now that he's gone and her grieving is extreme right now. It should be. Until we grieve, we can't move on.

    I am dealing with my husband's slow death, that is staring me in the face, by thinking about my future after my grieving, because to think about today and tomorrow is unthinkable. I have a job that I MUST keep at all costs in order to live and pay my bills. I don't have an option. Therefore, I keep going. Yes, I get depressed. Yes, some days I don't want to get out of bed. Yes, some days I want to get in the car and drive away. BUT I CAN'T. My heart is here with my husband, and to make certain he is well cared for, I must be in top health too. Otherwise, who will take care of him like I want him cared for?

    My needs will be addressed after my grieving, but in the meantime, I HAVE HOPE for my future - hence my bucket list. And, I've added some of the others' plans to my own as well. This keeps me going.

    You all must struggle to come to terms with your lives and realize that NO ONE CAN MAKE YOU HAPPY BUT YOU. No one can bring you down unless you allow it.

    I HAD to get on my soapbox because I love all of you. You have been my family for more than three years. I couldn't have survived this long without you.

    And I love to give advice! <grin>

    Love,
    mushymary
    •  
      CommentAuthorfolly*
    • CommentTimeMay 27th 2010
     
    Words of wisdom from our dear Mary, as always.
  18.  
    Wonderful post Mary. Love you. I so agree....
    • CommentAuthorterry*
    • CommentTimeMay 27th 2010
     
    I appreciate your comments Mary and Joan's and I agree no one can make us happy but ourselves. I have tried so hard before the DX and then after to make a good life for us and fulfillment for myself now and after. I don't want to feel the way I do. I have invested $$$ and enormous time in psychologists, doctors, more different antidepressants than I can even count now. I've had "life coaching," - I bought this house after envisioning getting us into a "garden of eden" setting to bring me peace and a source of fulfillment. I'm trying. I've tried. I fight or I've fought for him and for me. I never in my wildest dreams would have believed a few years ago I could survive the setbacks and particularly family heartbreaks I have over the past three years but I have survived. People constantly tell me how they'd never be able to do this and seem as patient. Ha! I used to say the same thing about others.

    I'm feeling defensive I guess because it doesn't feel that simple - JUST TRY. I have. I am. And I still haven't given up hope. Sometimes I have these "sun bursts" I call them where this feeling lifts and I feel like making plans or have thoughts of the future. But those bursts go as quickly as they come.

    I think I and some others of us feel beaten down by this journey as for some reason I'll never understand it seems like at the time we need things to go smoothly and have support the most, that's exactly the time so much falls apart all around us and the heartbreak and exhaustion overwhelms all else.
    • CommentAuthorrachelle
    • CommentTimeMay 27th 2010
     
    Mary, thank you for sharing hope. A year or two ago I was, with some others, addressing a difficult situation with someone. The person was defensive (as we'd anticipated)----did get the message from us but left with a parting shot: "None of you know what it's like to go through hard times." Wham! Knowing the others, I was aware that each one was (or recently had been) walking through some challenging circumstances. I had, just two hours previously, received some very tough news. Yet, that person's personal circumstances were all that person could see. I think we all have moments when all we can be overwhelmed by the personal challenges/circumstances of what is happening to us. We can get weighed down by fatigue or social isolation or one too many negative situations happening all at once. Each of us, as TexasJoe wrote, will respond differently dependent on various factors/dynamics of our individual life history.

    But I was so encouraged by Mary's reminder that we have LIFE. We are alive. That is a gift. Several years ago I went through a health situation that could have been terminal. It wasn't and I survived. It was a difficult time and I remember afterwords telling myself I would never take life for granted again. I was glad to be alive and grateful to be better. But over time, daily life happened and I forgot to be grateful. I remember a time, a few years later, when facing some awful times with someone near and dear to us and I was crying out, why? Why us? Why do I have to go through this? And at that moment it was like God reminded me that I could have died some years earlier yet I was still living and breathing on planet earth. I was still here and present for that person who would have been devastated to have not had me around. That moment helped me so much to realize anew that LIFE ITSELF is a gift. I was alive and had the opportunity to choose (as Mary wrote above) to use that life as best as I could in the midst of not easy circumstances. I am imperfect and often fall flat on my face in giving and sharing but I can look back and truly be glad for the reminder, several years ago, of my mortality . . . it helps give purpose to my life now (and in the future).
  19.  
    Here I am-AFTER. Now what? Bill and I had a wonderful 51 year marriage producing three marvelous children. My personal feeling is that it would dishonor my family to not continue to have a fulfilling life. No, it is not the way I planned it to be. I an continuing in my husband's foot steps to mentor school kids. In his memory I plan to continue community service. I am seeking out people in my community who feel isolated because they are 24/7 caregivers. I will try to be there for them. Again-my own feelings-life is a gift and I will treasure it and continue to make a place for myself in it. Who knows-I may even enjoy it.
    •  
      CommentAuthorSusan L*
    • CommentTimeMay 27th 2010
     
    As I sit here and think about all that has been said on this subject (and I know there is lots more conversation to come) I can't help but think back to October when I tried to take my own life. I am so very grateful that I failed. I am here for a reason. I need to take care of my grandsons. I WANT to take care of my boys. I WANT a future. Am I happy yet, not really, do I have hope that I will be, YES, someday. As I've said before, Grief is a Very Personal Journey. I never thought I would really want another relationship, now I believe I will want one. I'm 54, what will I do for the next, 20, 30 years, if I'm lucky? I'd love to have a caring compassionate, hell, passionate, man in my life. Someone to hold me, talk with, travel with, sit with on my porch swing. I love to kayak, bike and walk. I don't want to do these alone. I want companionship, I want love and laughter again.

    I love you all so very much. I cannot imagine life without all of you. I care for this group as though we have been together forever. So many of us have had recent loss. I would love to hear more from those who have SURVIVED the loss for a year or longer. Thank you Joan for picking up on how much we need to continue this discussion, AND God Bless your Dad! Keep us posted on how he is doing.

    Arms around,
    Susan
  20.  
    Joan,
    your blog for today was an inspiration for me. i have felt for a long time that at 69 and 50 years of marraige that when my DW passes my life would be over. i cannot imagine starting over and trying to begin a new life without her as she has just always been there before AD. it is good to see that just maybe that has been the depression talking and that God willing a new start will be possible. i don't have a clue where it will lead but with God as my guide i know it will be the right thing. thank you for the uplift.
  21.  
    Well, my husband has been dead for over two years now....but, to me, he was gone for many years before that. I just took care of his body until he didn't need it any more. We were together since I was a sophomore in high school and he died when I was 60 years old....long time. Had a great marriage, two wonderful kids, fun times, happy times, but through it all I still had a life of my own. He was a golfer, a workaholic, gregarious and the life of the party. I was the reader, the stay at home Mom, more reserved and happy to be at home. Somewhere along the way that has changed....LOL! But, seriously, I am sorry he became a victim of EOAD and eventually succumbed to it. I am still alive.....I have things I do, people I see and places I go......I wake up everyday and am so grateful to be able to still have so much to live for.

    Somehow, this is the life I was meant to live for I believe that everything happens for a reason. I was a much loved and pampered wife....he gave me everything that I ever wanted and provided me with a secure future.....I feel like I was able to repay him (in some small way) for his loving care of me by taking care of him at the end of his life.

    I am not interested in another relationship.....I am perfectly happy living on my own. I have redone my home in my own style....I have friends who travel from all over and spend weeks with me, I travel to them and enjoy their hospitality....

    I am in charge of my life now....I can be happy or I can feel sorry for myself...but, I don't want to spend the rest of my days waiting to die.....
  22.  
    Well said, Joan.

    Some years ago, when DW could still walk, but with assistance, in our Sunday School class we were discussing something relevant, and I contributed that after being bitter and depressed about what is happening to my wife, I had had a kind of revelation that happiness is a choice, and that I now choose to be happy. I think that happiness lasted a few weeks, then went underground again when things went sour or difficult to accept. It’s tough to choose to be happy when you are overcome with sadness and/or anger at what is happening to the love of your life, and to imagine any kind of ‘after‘ without them. But I do believe after the devastating grief over the loss of our LO, when the healing is nearly complete, you can choose to be happy with a new life to come, or to continue to be bitter and sad for what life has done to you both. The guilt you feel about you still being alive to choose happiness while your LO did not have that opportunity has to be faced and overcome however you can do that, before you can choose happiness.
  23.  
    Happiness and sadness can coexist. I just watched a video my son sent of our only grandchild. It was her dance recital. I watched it with tears running down my face because my husband never got to see this lovely child. I cry for him and not always myself.
    • CommentAuthorcarosi*
    • CommentTimeMay 27th 2010
     
    This is not a cliche: "Today is the first day of the rest of your life." It is true now, as we caregive; it will be true a we mourn the final loss of our LO; and it will continue to be true for what ever time we have after that loss. There is no use in questioning "Why me?/Why us? No one of us is any more or less on the scale when these things are meted out. What makes us more--or less--is how we deal with what we are dealt. Do we scream, holler and fight? Or do we knuckle down and work at dealing? Or maybe we fold up, bow down, and let this disease take us too?
    Everyone will handle this differently--not right or wronmg, just different.
    A couple things I know though, are that self pity is a valid emotion, to be experienced when things are really rough, but not to wallow in; and that our lives will be as good, blah, or crappy as we chose to make them. Yes, I said it is our choice. We can actively plan for our futures, or passively just let whatever happens happen. Frankly, if you chose to just let it happen, It's my opinion that you don't have much of a leg to stand on if you complain.

    We will all have an AFTER--like it or not. What we chose to do with it is what matters.
  24.  
    Carosi, that's a very good line, "Frankly, if you chose to just let it happen, it's my opinion that you don't have much of a leg to stand on if you complain". Makes a lot of sense.