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    • CommentAuthorHeidi
    • CommentTimeMar 17th 2017
     
    Are other people here suffering with depression? I'm having a hard time accepting the diagnosis of early onset AD, which my husband received a little over a year ago. I'm a nurse and know what Alzheimers is and am so overwhelmed by it. Working with patients with AD is a job that I enjoy and do well, but living with it.... I can't see us / me coping with it, i just don't see me handling the future , I just don't want to. Since three months I'm taking an antidepressant. It gives me more energy and i function fine, but mentally it doesn't seem to loosen my blockade. I want out.
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      CommentAuthorCharlotte
    • CommentTimeMar 17th 2017
     
    Depression can come with it. I want out too. This month starts 10th year since diagnosis - can't believe it has been that long and no end in sight. I have been on a low dose antidepressant for the last 3 years. I have tried coming off but missing just one day and I will cry very easily. The only way I can function at all is to make sure future needs are in order and then not think of the future but only today.

    Money I got a call from the nurse from the VA pallative care. I spoke with the guy at length on Wednesday and their social worker is calling this morning to hopefully let me know what is available down the road as to home care and when he will be eligible for placement. For me I can't wait. I also have an appointment today with my case manager at Aging and Long Term Care for my yearly assessment. With this it is hard to not think of the future but once I get the info I can go back more to just one day at a time.

    Where you are with other victims of AD at work, you are more aware than those who have never been around it. That adds to the gloomy future of your husband and you.

    Also, because it is your spouse it is way different emotionally than when it is other family members which is why Joan started this site.

    If you need to vent find a counselor and/or come here. We understand.
    • CommentAuthorOnewife
    • CommentTimeMar 17th 2017
     
    Count me in for wanting Out. I have what I call dread, dread so deep I feel it in the pit of my stomach. I wake up somedays and for a minute I feel normal. I realize my situation and dread the day ahead of us. I feel like I'm frozen on a railroad track and can hear and see the train coming. I don't feel this way everyday, somedays I can handle better than others. I just want this to end. Charlotte how you keep going for 10 yrs is amazing. I guess we just have to keep going until the day it's over and we can be happy again.
    • CommentAuthorHeidi
    • CommentTimeMar 17th 2017
     
    thanks for sharing. I'm usually an optimistic person and can cope with problems. But with the AD my emotions are like a rollercoaster. I have good friends, hobbies and work and am very busy. When I'm with other people and they ask how it's going I usually just say "fine" to skip the topic. When the AD progresses and everything gets to be more restrictive I don't think I can keep going. It just seems so futile and hopeless. Sorry that I'm ranting here.
  1.  
    Like Charlotte said, the only way to handle it is one day at a time. You have to do the work of care planning and all that--figure out how to preserve your finances, when you will place them, or how you will manage at home if you don't place them--all that stuff. But for yourself, personally, as the Alzheimer spouse, the only way you are going to get through it is to take it one day at a time. You have to create nurturing moments for yourself.

    I think that depression, lethargy, apathy, etc. just goes along with being an Alzheimer spouse the way peanut butter goes with jelly. Boooo.

    The good thing about this website is that the people "get it", much more than the regular, not-dealing-with-Alzheimers "civilian" friends do. There is a lot of support here that you probably won't get--at least not so consistently--anywhere else.
    • CommentAuthormyrtle*
    • CommentTimeMar 17th 2017
     
    Hi Heidi, I started suffering from depression as soon as my husband was diagnosed and it lasted for 10 years. I think that I am coming out of it now that he has died. I never wanted out, though, because I could not bear the thought of being separated from my husband. If your depression is caused by the situation, I don't know what you can do about it other than keeping one foot in the non-Alz world, taking antidepressants, and talking to a counselor. Many times none of that works, though. I agree with the others that working with Alz patients at the same time your spouse has Alz is too much. Is there a possibility of being transferred to another area of nursing?
    • CommentAuthorHeidi
    • CommentTimeMar 17th 2017
     
    One day at a time, maybe I'll get better at it with time... I only work 6 nights a month in a retirement home and it's not a problem. I don't want to work in a hospital anymore, my son spent the better part of two years there, with terrible pain issues and about 25 operations, so for the moment work is okay. Thanks for sharing your experiences.
  2.  
    The key is to not think too much about what might be.

    Yes, the reality is staring us in the face and we can read all about the horrors. I did, but I also learned that it was best to just take everything one day at a time. Every case is different.

    Heidi, don't let this take you down too. If I can survive it, you can, too. There are little daily joys even in Alzheimerland. Maybe it is ice cream, or a kind word from someone. The neurologist once took two minutes at the end of an appointment to tell me that I was doing a wonderful job, and I replayed that in my head a million times to help get me through. I think I am a far different person than I was when this all began, and I like to hope that it is mostly for the best. I would go outside and watch the International Space Station fly by and for some strange reason, it gave me hope and strength. Don't let giving up be an option - get some counseling, if only for a chance to vent. It is amazing how helpful it is to have a sympathetic ear.

    Look at it this way: your husband has a terrible terminal disease but that doesn't mean that your life is futile and hopeless. It is different now and very hard, but not over for you. Instead of thinking about how awful it may become, think about how you can streamline your life. It will make so many things easier. Get rid of stuff. Don't do things that require too much planning or energy. Purge dramatic friends. Make your wardrobe comfortable and easy to care for. Get a new haircut. Listen to music (the 40's station got me through the trips to and from ALF). Listen to books on tape - try to discipline your mind to concentrate on the story. I found that by walking and listening, I could be transported into the story - and don't listen to sad, scary, and awful stories.

    I don't mean to sound like a Pollyanna. This is not fun, or fair. It is frankly horrible. . . but. . .don't let it claim you, too.

    Finally, when you are feeling hopeless - come here. We know. We care. And a number of us have survived and are still around to offer solace and encouragement.
    • CommentAuthorHeidi
    • CommentTimeMar 17th 2017
     
    Thank you
    • CommentAuthorSass
    • CommentTimeMar 17th 2017
     
    Heidi, I also have depression as a result of dealing with this disease. I never used to have a problem with it and was able to handle all the stresses that life throws at you until my husband was diagnosed 4 1/2 years ago. In the beginning I was still able to handle things but in 2015, there was just an unbearable amount of stress in my life not only with my husband but my son had to undergo major surgery and one of my best friends died. All of that was a breaking point for me and I knew I was getting really depressed and had no energy to do anything. That wasn't possible because I still had to care for my husband, I was working full time (and still am) and had a son still in high school. That was the year I started my anti-depressant and I'm still on it. It has helped but I still get depressed by my situation. As marche says, you take one day at a time. I am not the one who is sick and am determined that I will not become a casualty of this disease. I do things just for me. My husband is in an ALF now but when he was still home I still managed to do some things every now and then for me. Work was an escape of sorts but not something that was stress free. But a nice glass of wine at night, getting in a walk around the neighborhood, getting a pedicure were all things that I did to maintain some sanity. Life is still hard with him in an ALF, but a different kind of hard than when he was home. As the others have said, there are different phases and you have to take one day at a time. Do the best you can, don't beat your self up for not doing "everything" and be kind to yourself. We are all here to support you, listen to you and be your source for encouragement. I know you can do this. You will learn things about yourself and how strong you are when you least expect it and despite the fact that you think you can't do it. You can and you will... one day at a time. ((hugs))
    • CommentAuthorjulied
    • CommentTimeMar 18th 2017
     
    Heidi, my husband was diagnosed 5 months ago with EOAD. I've always been a happy, upbeat person, but I'm experiencing depression. He lost his job and our insurance. His bad financial decisions he made without my knowledge before he was diagnosed depleted our retirement savings. I was a stay at home mom but I now work to try to support us along with the SSDI I was able to get for him. He will receive Medicare soon but that won't cover long term care if and when he needs to be placed. My husband was kind, patient, and funny. But now the minute I get home from working all day, he snaps at me. I walk on eggshells. I'm exhausted and worried about the future. I can't deal with one day at a time. I have to take it one hour at a time. Somehow, we just have find a way for this horrific illness not to take us too. You are not alone.
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      CommentAuthormary75*
    • CommentTimeMar 18th 2017
     
    Julied, and sometimes just the next five minutes.
  3.  
    Heidi I really feel for you particularly as a fellow RN. In my career, I was around dementia/Alzheimers for over four decades and thought I knew something about the impact on individuals and family. Truly, I had no idea. As you say until one lives it.

    I hope my comments about my experiences don't alarm you and I offer them as a hope you can take action to not fall as far as I did.

    I got terribly depressed and basically lost myself for over 9 years to my husband's disease. I gained 30 lbs, stopped exercising which I had done all my life, lost my closest friends (which can go with the territory of this disease as you will see on the threads), and basically just survived. The last two years my husband was at home my whole focus was to keep him and me safe. His delusions, paranoia, and aggression were through the roof. He held it together for brief periods in public and no one believed me he was ill. Then when he went to care my role changed to one of advocate. He ended up in three facilities due to aggression with lots of acute care hospital admissions sprinkled in there. Looking back I wonder how I managed. I said to my counsellor more than once, "the best way out of this is to just die."

    When my husband died, I managed to get all the post death work done. The morning after the last lawyer's app't I woke with severe body pain. I couldn't believe the level of exhaustion after all those years of mental and emotional anguish and suffering. The body pain lasted for over 9 months and I truly thought for a bit I was headed for a wheelchair.

    If I had to do it all over again I would work harder on my own health. And surrender more.

    I struggled too with looking into the future. As our wonderful friends here wrote, sometimes it is only the next five minutes or just the day.

    And this site has been a complete life-line for me all the way through and now. We are here for you. Take good care.
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      CommentAuthorCharlotte
    • CommentTimeMar 18th 2017
     
    Don't forget we are not the only ones that may need an antidepressant. My husband is on a very low does of sertraline. When he would miss taking his pills for a day I would notice a difference in his attitude. He would get antsy, thankfully not violent. So a low dose medication may help with our loved ones mood too.
    • CommentAuthorHeidi
    • CommentTimeMar 18th 2017
     
    Thanks for sharing, it is humbling and unbelievable what so many of you have gone through. I'm more or less at the beginning of this unwanted journey. If I could quit thinking of the future maybe I'd get through the present easier. I just wish I could stop my thoughts.
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      CommentAuthorCharlotte
    • CommentTimeMar 18th 2017
     
    Be easy on yourself and give it time.

    I think all of us can say at the beginning we could not stop the future thinking 24/7. For me it took 2 years of sitting around waiting for him to die (someone here had made that comment about what they were doing) and gaining 40 pounds, then I kicked myself and got going living for the present.
    • CommentAuthorHeidi
    • CommentTimeMar 18th 2017
     
    Ive lost about 20 pounds and feel a lot fitter, at least one benefit from this.
    • CommentAuthorFiona68
    • CommentTimeMar 19th 2017
     
    katherinecs: I'm going to try to surrender more.

    I'm aware that I have depressive moods but have not taken antidepressants yet. I do, however, take sleeping pills (5mg Ativan) because without them I cannot sleep, which makes my moods much worse. Thankfully, I do not suffer any side effects of Ativan.
    • CommentAuthorRSA
    • CommentTimeMar 31st 2017
     
    Heidi, I'm late coming to this conversation, but for what it's worth: I haven't had depression, but still ups and downs. A few years ago it felt as though I were being pulled apart. I found a therapist, and I talked with her for a couple of months, and that was enough to help me out of the mental hole I was in.

    The main challenges for me was that I was trying to keep everything separated in my mind. I had to be a caregiver; I had to try to keep what could be saved in my relationship with my wife; I had a job, a career to maintain; I had friends and a social life. It turns out that putting all these concerns in separate boxes didn't work for me. I had to figure out a way to put all these issues together, with myself at the center. I have better balance now, partly with the passage of time and partly because some of the issues have gone away.

    I was afraid of losing myself for a while, and it felt selfish to focus on my own needs, but it was necessary.
    • CommentAuthorRona
    • CommentTimeMar 31st 2017
     
    RSA I think we are both at the same stage with our wifes going into care within the year and your comments resonate with me. Heidi I don't know if I would have said I was depressed along the way but I certainly was stressed and hit the wall about 18 months ago. Looking back After diagnosis we had a number of good years together, good well that is a relative term, we I think did well, we were totally upfront with people about what was happening, travelling as much as we could for as long as we could. For the most part found everyone very supportive. But as things got harder and harder I found that I got more and more stressed and worn out. I Found myself crying at small things, unable to talk to people about what was happening without breaking into tears. For me I knew the time had come where I needed to place Lisa. Why am I saying this, well like RSA I don't think I compartmentalized but for those years lived with Alzheimers as part of our lives. I too looked at what was ahead and thought ok I won't be able to handle it what it gets to this stage but then it does and I did handle it. I got through for longer than I thought I could.

    Now after she has been in care for just about 9 months my role has changed, she is about 30 km away but I visit about 4 days a week, I am still responsible for her care but the burden of 24 hours a day caregiving is no longer there. I do. Not feel the same stress, I still cry at times when I see what her life has become and still feel survivor guilt at times. But I am no longer stressed all the time I am no longer living in the dementia world full time and have decided my life will go on and the dementia world will fit into my life instead of the other way around. I have started a new relationship it is not compartmentalized but part of who I am now, as Alzheimer's is, the two coexist. We both understand, this is part of what has made us what we are and part of what we love about each other.

    Heidi it is a long go and I think all of us would be fooling ourselves if we did not feel stress or depression along the way. We all must make our own way through this we all choose our individual path. Good luck you will get through and you will survive.
    • CommentAuthorHeidi
    • CommentTimeApr 5th 2017
     
    Thanks a lot for your comments. I guess we'd be fooling ourselves if we said it was an easy road.. It's just hard finding the balance. The term compartamentalize rings a bell, and i tend to do that. Away with friends, doing sports, work, whatever and when I come home it all seems to fall down on me like a huge boulder. But sometimes more and sometimes less. I guess I'll survive too somehow. Tx
  4.  
    Heidi

    When I was taking care of my Dear Helen, as she was slowly going through the horrible stages of Vascular Dementia, There were times that I just wanted to give up the battle and run away. But those thoughts never entered my head when I was busy doing something that really needed to be done.

    If I was doing anything at all that I thought was of some value, It gave me a feeling of self-worth and the depression was gone. So everything I did was not only for my Dear Helen, but for myself'. And I could actually be happy and proud of myself. It was only when I was sitting around doing nothing that I became depressed. To put it simply, I learned the value of keeping myself busy.

    Now ..... I'm living here at Hillcrest. An old folks community which provides us oldies with all kinds of activities to entertain us, but strangely, I've noticed some of my friends here just seem to be lost and wandering around aimlessly with nothing to do.

    As for myself, I would also be lost if it were not for my computer and the wonderful World Wide Web. I'm a computer dummy but I'm learning. Half the time I'm messing things up and the rest of my time I'm trying to fix what I've messed up. But that's the way I keep myself busy and that's what works for me. Even if In my efforts I produce nothing of any value, I feel that I've learned something of value. Of course it's possible to learn something of value by watching TV or reading a book so I guess it all depends on one's attitude.

    Another way for me to keep busy is writing stories such as this one, and I put them on my little website where I can read them and agree with everything I read and marvel at the intelligence of the writer.
    • CommentAuthorMim
    • CommentTimeApr 7th 2017
     
    George, I love your last paragraph! A sense of humor can work wonders & you have a great one...sounding so positive also. You're the man!

    HEIDI, I'm so sorry that you must deal with this...in fact, I'm sorry for all of us. It's a damnable disease, it's so hurtful, stressful, & life-changing for everyone involved. As those comments above have said, one day, one hour, one minute at a time, although it isn't easy. I've battled with depression for years, so I really didn't see a dramatic change in myself over these last 7 plus years. I do know, though, that without anti-depressants, I would not be able to function at all. I've had many days of thinking about the future (I am 75, so there really aren't that many years to consider!!!), or even if there is one. It's a frightening prospect, but God has blessed me with more strength than I ever thought I could have...emotional, certainly not physical. Dan has been in a facility for a year now, but the anxiety is still with me every day, some worse than others. That & depression just seem to be a part of the caregiver's life. I would recommend seeking help for that, if you haven't yet. You must be able to function in order to help your husband in whatever way you can. I'm familiar with wanting to run away...I'm going through that right now myself. There's so much more to tell about my life now, but that's for another time. The important thing is that you take care of you! (I know, I know...so easy to say, so difficult to do).
    • CommentAuthorLindylou
    • CommentTimeApr 8th 2017
     
    Heidi, I want to echo what others have said about taking care of yourself, getting all the help you can, but I want to add that you need to do it as much for yourself as for your husband. Like you, I worked with AD patients and both enjoyed the work, and did it well. But it is very different when it is your spouse and it can tear you apart. My goal through this is to find the help (emotional, spiritual, physical, and social) that I need to survive so I will be able to continue at the end of this terminal disease that has us in its grasp right now. My thoughts and prayers go out to you.

    Mim its good to see you back.
    • CommentAuthorSass
    • CommentTimeApr 9th 2017
     
    Round and round I go on the depression merry go round. It's physically, mentally and emotionally exhausting. I am so sick of feeling this way and feeling like I'm just standing around waiting for the bomb to drop. Every little bit of bad news gets my anxiety wheel turning faster and faster. Not a good day and hoping I will feel better tomorrow. I am running out of energy and strength to deal with everything. I keep pushing through in hopes of coming out on the other side one day. Right now, I just feel like crap.
    • CommentAuthorHeidi
    • CommentTimeApr 10th 2017
     
    Sorry to hear that Sass, I know how u feel. Some days are bad and some are better. Thanks Lindylou, work is no problem, but when it's my husband I don't cope that well. I kind of imagined life with 45 to be different.
    • CommentAuthorSass
    • CommentTimeApr 10th 2017
     
    Thanks, Heidi.
    • CommentAuthorBev*
    • CommentTimeApr 10th 2017
     
    Katherinesc, when I read your post a lightbulb went off in my head. Like you, I went through almost all the post-death things that needed to be done and I was kind of surprised to find that I seemed to be doing so well. But for the last week I have felt like you. My body has pain all over it, even in my toes! I couldn't, for the life of me,Miguel out what was happening to me. Yesterday, for the first time since the evening he died, I cried and cried and couldn't stop. This lasted for over two hours. I thought about every single thing that happened to him that last two weeks of his life. I lived over and over again his last minutes. It was absolutely awful. I thought about the things I did for him and the guilt for times when I got angry. I never blew up at him. I learned to walk away, even though my insidesfelt like they were In a vise.

    But I shouldn't feel guilty. I took good care of him and I know he's looking down at me and trying to tell me that. Yes, more than 10 years is a long time, years I can never get back, but I will try to take satisfaction In Knowing he had me when it counted and I had him when it counted. We were together for a reason.
    • CommentAuthorWolf
    • CommentTimeApr 12th 2017
     
    There's not much that is objective about what we do. They need us and that's objective. Some people outside of this can see something else that's objective. That is that when they look at what we go through for our partners and then hear we feel guilt - they know that's damage caused by fighting the disease. Depression is understandable but guilt is an extremely unbalanced response when we're giving everything but the kitchen sink to help.

    I had it too. The truth is I've never given more, worked harder, or paid a higher price and even though I wasn't close to perfect and had some red light failure days - that was a tiny percentage of the days I gave whatever it cost.