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Joined: 1/14/2015
Posts: 40463
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Originally posted by: Montanaman
Because we met in 2003,married in 2004, Alz came knocking in 2007, diagnosed in 2009. Now all our retirement money is spent on medical and doctors. We live on SS. Not at all the life we expected together. I do not have the same feelings towards my mate as some who have been married for a long time 30,40 yrs etc. I feel cheated and like a drudge. The idea of divorce still comes into my mind once in a while. I am just saying that the experience of someone in a short term marriage is different than someone who has been through 30-40 yrs. We do not have children together. Our memories are short. It is hard to keep them alive when the life of the disease is longer than the the life of the marriage.
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Originally posted by: Cheryle Gardiner
Montanaman, as Be Strong 2 says, we each have to decide for ourselves.
Jim and I were married July 17 of last year, but have been together - like you - since 2003. Jim has three strokes and was diagnosed with VaD before we celebrated our first anniversary this past summer.
We knew going in that our years together would be few, but we didn't expect them to be this short. I will putting our 5th wheel and his new truck up for sale, along with our boat. I mourn the things we had planned that we will no longer be able to do - another trip across the US, our planned trip to Yosemite (where we would be right now), the freedom to just pack up and go away for a week - but I also love the memories that we have made and just this afternoon, I was reminiscing with him about our trip to Europe two years ago.
I'm sorry that things haven't worked out for you the way you had planned, but I only ask you to ask yourself what your spouse would do if you were the one who is ill? And who will step in to be her advocate if you leave?
I truly don't think you can measure the value of a relationship by the number of years it's been intact. Only you can know if you really understood that "better or worse" meant more than if you won the lottery, or if "sickness and health" meant more than a broken leg or the flu.
I am not judging you or condemning you. Each of us has to walk our own path. I'm just suggesting that you think about these things before you make any decisions. It's a hard road for sure, and it certainly isn't for the faint of heart!
Blessings.
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Originally posted by: Starling
Long term marriage or short, there is the stage where you feel cheated because this wasn't the retirement you expected to have. And it doesn't seem to matter if it is an RV that has to go, or a huge wine refrigerator sitting in the utility room (my case) that keeps reminding you of what you expected to have that doesn't exist anymore.
The grief and pain from losing all of your plans and expectations while living through the hands on caregiving for a person who can no longer be a partner to you is miserable.
Is it different if you were married for 5 years from what you feel if you were married for 50 years? I honestly don't know if you can quantify the kind of pain we are talking about.
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Originally posted by: Be Strong 2
Our timeline is almost identical to yours. Our marriage vows still said, "for better or worse, in sickness or health, until death do us part."
I just sold the RV and truck, hardly used, lost money. I just look on it as an expensive experiment.
We each have to decide for ourselves. I know what God expects of me.
Bob 
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Originally posted by: Dorinne
ditto
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Originally posted by: Aminda
None of us are living the the life we expected. We have lost all our expectations, my husband always said, "I will take care of you". Well it did not turn out that way. I take care of him. I am not sure if he would have done the same for me, but I am doing it as long as I can. Don't feel bad if you think that you can't do it, it's a hard journey, only love can make you do it.
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Originally posted by: younghope1
My husband and I were together for 3 years before we got married in 2000. It was shortly after that, that he said I started changing in personality, burning our meals, messing up the bills, getting lost in the hospital I had worked at for 7 years at that time and it just got worse after that. In 2002, I was diagnosed with EOAD, with my diagnosis to be changed to FTD in 2007. He left me and my son who is now 17 in April of this year and moved about 10 hours away. We are all alone and have no family as my family is in denial. All I have is this forum and my Church and Chapter.
Tracy
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Originally posted by: kentsma
LOSS IS LOSS..
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Originally posted by: Cmak
Montanaman- I totally get you.
We have been married only 7 years, together almost 3 before that. My DH was diagnosed 6 months ago, 7 months after retirement.
So we do not have 20-30-40 years of memories. We were just learning to adjust our lives together when this happened.
Like everybody else has posted, it is not the life we planned for or wanted, but we deal with what God gave us, for better or for worse. Whether we have 5 or 50 years behind us.
I don't feel more or less cheated ( than anybody else )out of our life plans, but it is totally a different situation to those of us shortly married.
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Originally posted by: Snorky
[QUOTE]Originally posted by younghope1:
My husband and I were together for 3 years before we got married in 2000. It was shortly after that, that he said I started changing in personality, burning our meals, messing up the bills, getting lost in the hospital I had worked at for 7 years at that time and it just got worse after that. In 2002, I was diagnosed with EOAD, with my diagnosis to be changed to FTD in 2007. He left me and my son who is now
17 in April of this year and moved about 10 hours away. We are all alone and have no family as my family is in denial. All I have is this forum and my Church and Chapter.
__________________________________________________
I am at lake Pomme de Terre in SW MO. and have not heard of your camp. I think it's a wonderful idea for the children. I'm so sorry you have to go through this road alone but it sounds like this camp means a lot to you and you must be a very caring person to do something like this camp. My husband is 78 and in a NH since May with AD.
♠
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Originally posted by: SherylS
OK, I have been married 43yr, so this wouldn't apply to me. I'm not in your shoes.
However, those in marriages of short duration, especially if you are older need to look at cold hard facts. Once he's gone, you would receive the larger of your two social security checks. Not both, but the larger. Could you live on just yours? Would the man you married have wanted you to have his?
How about your possible VA benefits if he has those? You might want to be thinking of those things, not of how this has turned into a nightmare.
Would you be better off as a divorcee or a widow....things to think about for the long haul.
Contact an Eldercare attorney before jumping ship.
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Originally posted by: Pamella
Wow, I can relate on so many levels. I often tell my friends that someone came in and plucked my husband right out of the house and replaced him with someone elses. So I know how it feels when you say you don't have the same feelings as you did before the illness. There are so many aspects of this man I don't like but the real man shows up every once in a while wich helps me get through the day. We have been married for 20 years. My husband has 2 adult children who are married and have there own lives so with out me he would have nobody. As much as I would like to walk away sometimes I don't think I could live with myself so I would just be trading one pain for another. Now with that being said..I also had a friend whos husband was abusive and their marriage was horriable. She did not have a problem transfering his can to someone who actually cared about this man. Just saying, IMHO I don't think there is a "correct" answer to what one should do. You just have to live with what you decide. I for one hang on the the little tiny bits and pieces that I see in my husband that reminds me of who he is (was). Trust me they are few and far between but I can live with this and can't live knowing someone else is taking care of him. On a "bad day", I might think otherwise but usually get over it 
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Originally posted by: Cathy J. M.
quote: Originally posted by Montanaman:
Because we met in 2003,married in 2004, Alz came knocking in 2007, diagnosed in 2009. Now all our retirement money is spent on medical and doctors. We live on SS.
I understand how you feel cheated and like a drudge. These are feelings that are nudging you to make some positive changes: cut back on whatever you have to in order to hire some help or send him to day care, see a therapist or other counselor yourself, study more about caregiving, etc.
But I don't quite understand how, if you're both on SS, all your savings have gone for medical bills -- unless there's no way you can pay for Part B, D and a Medicare supplement from your social security. If that's true -- you might be eligible for help with these payments.
Maybe the AD and medical bills came before you were eligible for SS and Medicare, and you didn't have good insurance back then?
Otherwise, at least you shouldn't have to worry about medical bills.
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Originally posted by: dayn2nite
quote: Originally posted by Montanaman:
Because we met in 2003,married in 2004, Alz came knocking in 2007, diagnosed in 2009. Now all our retirement money is spent on medical and doctors. We live on SS. Not at all the life we expected together. I do not have the same feelings towards my mate as some who have been married for a long time 30,40 yrs etc. I feel cheated and like a drudge. The idea of divorce still comes into my mind once in a while. I am just saying that the experience of someone in a short term marriage is different than someone who has been through 30-40 yrs. We do not have children together. Our memories are short. It is hard to keep them alive when the life of the disease is longer than the the life of the marriage.
Whether there's a long or a short marriage behind you, you can't sustain yourself on memories. One thing this disease has taught me is to live in the present moment. While you're trying to find the person you married and reliving memories, your life is passing you by and the memories you could be making now are passing by also.
This could go on for another 10 years, if you have come to hate who he is now, please do both of you a favor and let his children take care of him or place him. Or you could make up your mind to find the good that is still within him now and continue on, adjusting along the way.
You keep putting emphasis on the length of the marriage and how it's very different from the long-term marriages of many people on this board, but there are a number of people who were in what I would call "abusive" marriages for 40 years who are still caregiving, whether directly or indirectly. You at least had happy years, however few of them there were.
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Originally posted by: Jazzythecat
The stats for this topic are thus:
90% of new marriages do not survive when one spouse gets a chronic dibilitating disease. The reason for that is because there is not enough history of sharing and building a life together.
It's a personal choice whether to stay or leave.
I can see why people choose to leave. You signed up to be a wife, not nursey nightingale. The sick spouse is not capable of living up to their vows, so it's one sideded. And sometimes it's committing financial suicide to stay the course. What about your own health concerns.
I also can see where they love them and want to stay no matter what. Or sometimes it's financially necessary to stay married.
They are tough choices with many variables to consider. Just looking at the vows one took is not enough. It's way more complicate than that. That is why it's so important not to judge unless you have lived in their shoes for a while.
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Originally posted by: SusanGS
Reading all this makes me know only one thing for sure...there are others that have the same problems as I do. I have now sold a lake house, boat, truck, car and need to down size our home. I am only 54 and feel my life is over and I can not tell my children how lonely I am. I know all of you caregivers stay so strong, but after 5 yrs I am tired and I do not want to hear any bull shit about GODS love. And the big question...how many years can I do this? And yes we have been married 34 years and I still love him.
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Originally posted by: CherylMc
Hi, I am Cheryl and I don't think I have ever posted but have been a reader and member since 12/10. Thanks to everyone for all the info I have read thru the months. Just wanted to share a couple of thoughts on the subject, hope no one minds. I will try and make a different post about DH and I and our AD so as to not take away from this one.
A poster made a comment that I can totally relate too and truly believe:
"Whether there's a long or a short marriage behind you, you can't sustain yourself on memories. One thing this disease has taught me is to live in the present moment. While you're trying to find the person you married and reliving memories, your life is passing you by and the memories you could be making now are passing by also."
I also read this on another MB that I try and keep in the forefront of my mind.
“Their life just started 30 minutes ago and will start again in another 30 minutes”
DH was diagnosed about 4 or 5 yrs ago with AD (he just turned 62 this past June) so we have known for quite some time. We lived together 4 yrs before we got married in 2000. So our marriage isn't particularly long but not real short either. Fortunately DH's progression has been pretty slow(that may be due to his meds started early), more with just memory lost, although the last year more things have occurred like judgment, confusion sometimes(we call them "Earth to DH days") , he is still functional in every manner, drives, plays cards, takes care of things around the house etc, etc. We both have decided it is what it is and we can dwell on it or we can just live each day as it comes. One thing that helps us cope and not dwell, is laughing and making memories of the present. For example, when he loses something that he can’t remember where he left it..."he didn’t loose it, he misplaced it so it never was lost" and then we laugh,this helps ease the tension of constantly trying to find things.  DH leaves the house to go to his chicken barn to specifically feed his chickens...I look outside and he is mowing the yard....we laugh and say he got distracted and he can feed when he is thru. This helps him to not get so upset with himself because he forgot what he was doing. We were just lucky that day he wasn't doing it in his underwear like he has before... By the way we live way out in the country far back away from neighbors and the road..lol The point is we have learned for the most part, not to "sweat the small stuff".
I also try to put myself in DH's shoes, it can’t be easy for him either, because I know how frustrated I get with myself when I can’t remember where I put something or I have misplaced something(due to getting older)....I can’t even begin to imagine how DH feels. DH and I both decided that together we are on a "new journey" making new memories together...it doesn't mean our life has to end. We might have 10 yrs to make more memories or we might only have a yr and I don’t want to waste any of them! So instead of focusing on what should have been, we try to focus on what we have now as long as we can. None of us go into a marriage thinking of what could happen, but the reality of it is anything could happen so I don't feel cheated, I feel blessed because at least at this point in time we still have each other. I want to make the most of what time his memory can give us today, because when the time comes that all memory is gone...I will have those special moments to get me thru the hard times. When I start getting frustrated, sad or just down right tired of life in general.... I remind myself if I am having a hard time, how much harder is it for DH? KWIM?
We each have to deal with AD in different ways and my post is not to critize (?) the OP, nor change how he/she feels, I just wanted to let those know DH and I have coped with it so far and maybe this might help in some way. I wish you all the best and however you decide to deal with AD and your marriage...I wish for you both the best.
I am glad to have found this board and look forward to reading more. God Bless~
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Originally posted by: lurk
quote: Originally posted by SusanGS:
Reading all this makes me know only one thing for sure...there are others that have the same problems as I do. I have now sold a lake house, boat, truck, car and need to down size our home. I am only 54 and feel my life is over and I can not tell my children how lonely I am. I know all of you caregivers stay so strong, but after 5 yrs I am tired and I do not want to hear any bull shit about GODS love. And the big question...how many years can I do this? And yes we have been married 34 years and I still love him.
I am so sorry for the way you feel. Wish I could help. You need some help--can you get some?
I just want you to know that at age 54, your life is not over. I know, I know, you think that age 64 or 74 is OLD, but I'm 72. I am pretty sure my DH will live to be a hundred as he is very healthy, but if I am 80 or 90 when I'm relieved from the caregiving, I intend to have a good life, and I intend to have a good life along the way.
Yeh, I know--you can't even comprehend. So, I'm just telling you from the point of view of a 72 year old that at 54 your life is not over.
For the record, we had a rocky marriage. I was beside myself with desperation. The past year has been the best of our marriage--no longer critical/controlling. It is getting harder now. I'm doing almost everything. I'm tired. I'm sad. I loved him despite his nature. But I'm ready.
CherylMc, I am pretty much in agreement with you. We try not to take the difficulties too seriously. I can't help but remember a poster who, when she was cleaning up an incontinence mess, and part of the BM fell on the floor said, "Oh, shit!" Now that's seeing life with a good sense of humor.
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Originally posted by: Ben's wife
My DH and I are both in second marriages, and we just knew that we'd found the perfect person to spend our old age together. Now I look at him, he looks and sounds like my husband, but he's not in there anymore, and yes, that makes me really sad. I can't discuss matters with him anymore, he's stage 6 & doesn't understand. But, sometimes I look at him and think of how he would feel if he could see himself now. Once a man who could do anything, was in a management position overseeing loads of people, now not even able to remember how old he is. It's just a terrible disease - I just pray that he goes before I do so that I can see to his care.
I felt lost and depressed - then I decided it was time to get proactive & start looking for help. Now he goes to daycare once a week (all I can afford) and soon we'll be getting VA care & attendance for 6 hours a week. Now I have a much more positive attitude - amazing what just a little break can do.
We all have to keep on keeping on, I thank God that he's not abusive like some of you have to put up with. We all understand your pain.
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