I never thought that I could feel so alone while being surrounded by people, but even so, I guess that I would have never considered myself as depressed. I have been told by people at work that I have symptoms of depression. Am I in denial and just don't want to admit it? I have always been pretty good at coping in difficult times. Recently, it just seems as though no one at work understands what I'm going through, and why would they? HD is hard to understand. It seems like people don't act the same way to me anymore. Has anyone else had this happen? It really sucks! I am still the same person, I just happen to have a husband who has HD.

I'm sorry for what you are going through. I read your post and thought, "I could have written that myself." I found this forum a few days ago, when I was sitting on the porch to hide the tears from the rest of my family. My husband is also HD positive, and I know what you mean. Either people don't want to talk about it, or they don't know how to, and I don't know what to say to start a conversation. For myself, I cope for awhile, and then something will happen, or I'll read new info. that terrifies me, or I just really start to miss who my husband used to be, and I will spiral into a depression. It may seem silly, but when I can feel it coming on I call a few friends to go out to dinner, and tell them to invite whoever else needs a night out. It leads to a varied group, and so the conversations don't get too personal. We just laugh and eat and it helps. You're not alone in how you are feeling.

I haven't cleaned my house in 2 years nor cooked a meal since the day hubby went into care for some reason i see things differently now or just not seeing at all? Ignore 90% of my resposibilities ,sleep 3 hours middle of day .
Ive been told i have depression .Well all i know is that after caring 24/7 for someone i have become a very different person.I used to be very social now i avoid people as much as possible and all those cute senior citizens in the check out line now irratate the #@$$ out of me,where as before i would of chatted with them all
I feel very much alone outside my little HD world,but l now alot less alone since i found this place.This site is the first thing i do in am and check for new postings all day.Used to work three jobs ,now taking out the garbage is more than i can do in a day so i just don'tI 'm not sure if i like the new me but have thought of meds but for some reason they scare me.Wouldn't that be so cool if really there was a happy magic pill that would fix everything with no side effects of course.

ljgree I am the same in that my feelings fluctuate. I'll feel strong one day, and the next I get down. I am going to start an SSRI soon. I especially need it to help with sleep. It seems at night my have these intense repeatitive thoughts. I'm hoping to get some peace and cope better from my anxiety.

There's kind of a difference, to me at least, from what people call "depression" and actually being "depressed." The way I see chronic depression, it's a disease caused by a chemical imbalance, or whatever medical cause that leads people to always be down and out.

We caregivers have a real freaking REASON to be despondent. We don't have a chemical imbalance that makes us depressed, we have life issues that are real and the pressure causes us to be "depressed". It's more like Post Traumatic Stress Disorder or whatever pop psychology term you'd like to use to describe the constant pressure we are under.

And taking anti-depressants when you don't have a real physical need for them won't help (IMHO). We aren't "acting the same way anymore" because we aren't the "same way" anymore. Life isn't fun when you have to deal with all these issues. We can't be bubbly about the future when it doesn't hold all those shiny hopes and dreams anymore.

The long and the short of this: HD sucks for everybody around it. We can be upbeat, and we can look for the bright side all the time, and we can stay ahead of it, but it gets very tiring to do that 24/7. From time to time the shear physical and emotional drain has to take hold and this "depression" is bound to happen. How can it not happen?

But like everything else that hard, a person has to get up and get back on that horse and ride some more. It's obviously more difficult for some. You have to get some time to put yourself back in order, assess what's important, make a plan, and then act on that plan. Setting and feeling sorry for yourself is not something to be ashamed of at all. It's normal and it's natural. But in time one comes to realize that it won't get us from point A to point B.

Anyone who can get through this without feeling "depressed" is a better person than I.

Wow Fred, thank you for that.

That totally makes sense Fred. I try so hard all week at work to be as "normal" as possible and by Friday, the beginning of my weekend, I really don't want to do much of anything. It is normal to be depressed at times, especially under the circumstances, but I was floored when I was told at work that I possibly needed medication and therapy! I certaintly have my moments and I have mourned the fact that I've lost my husband, but I wish that people would just treat me like always instead of someone they feel sorry for. I still want to hear what happening in their lives (yes, even the exciting stuff). I guess that's asking for too much!

Well, what do you think Judy? Do you think you could be depressed, or are they just seeing you that way, because you have so much going on in your life that they wouldn't be able to understand.

Be careful taking the medication route. To me it's like drinking to solve your problems.

It's going to become increasingly harder to deal with the "normal" people. They are going to pull away from you if they find out just how much is involved in this. It's way over their heads. To them, if they get a parking ticket it's "the worst thing that can happen". They have no idea, no clue.

People can be sympathetic for a while. They can give all kinds of charity. But this too long term for that. After awhile the "charity" of listening to this becomes welfare to them, and they may wear out. They don't want to hear all of the bad things all the time, and they cannot relate. All of their petty problems pale in comparison to something multi-generational like this. This is like the worst thing that can happen.

A person falls in love with someone who spends 20 years succumbing to this disease. Your watch your spouse fade before your very eyes. And if you are lucky enough to live long enough you might get to see your child die. And if you are extra extra lucky, you get to watch your grandchildren fall into this also.

So if Little Sally Mae didn't get her cake right on time at her wedding reception, it's hard for us dealing with this to get all excited about it.

That being said, we can't give up. There is a great deal of hope on the horizon for people with HD. There are lots of people working really hard on real treatments and possible cures. It's up to us to keep slogging through this and hold each other up.

We have to stay healthy and look out for everybody we love the best way we can. We have to show everybody how much we can take and how much we can do. We have to hold the light of hope high and be strong enough to make the very best decisions we can for the benefit of everyone we love. We have to show what we are made of.

And we have to do it surrounded by all these "normal" people.

Barb, no I don't really feel like I am depressed. I was in a car accident several years ago and have severe neck pain that has been going on for over 6 months now. I've been to my doctor and have also been going to physical therapy for a while with little relief. I really think that what my co workers are seeing is the fact that every movement hurts and causes many sleepless nights. I am just tired of being in pain.

Fred,

You put it so well. I really have no intention of taking medication. At first when the news of my husbands diagnosis was very new, I did talk about it often, but now....I really only bring it up when I read something exciting or have a major problem that I need help with, like the nursing home trying to kick my husband out. But definitely try to not over do it. I have found that people don't really want to share their problems with me because like you said, they pale in comparison. I've had people apologize to me for complaining about their problems and that drives me crazy!
Since I live in a small town so many people know my husband and are always looking at me with pity and say how sorry they are. I just want them to act like I'm anybody else. It would be nice to talk about "other" things.

You will, in time. As his situation stabilizes, yours will too. Trust me It just takes a while. My advice is just to keep the talk about it to a select few, and only when you really really need it.

This site loves a good rant. Keep it here, and we won't get tired of it.

hi fred,remember talking to u a few yrs back.my wife becky has hd,what you say is so true,depression,but the caregivers must seperate
themselves from the desease to survive.ofcourse had no idea when i was depressed,but looking back,i can se it clearly,still have many problems in life from
the desease,but i think thats a given.hang in there folks,you didnt cause this,so give urself a break,except whats happening.

i used to keep a note in my pocket,huntingtons desease is evil,becky has huntingtons desease,dont ever forget that tony...

Good topic about work and depression. My husband has had HD for 10 years. I have only told 2 close friends at work and my 2 supervisors. I work in the medical profession and you would think my co workers would be compassionate. Unfortunately I have seen my coworkers in action complain about a people who have medical problems and had to miss work. I find they have compassion for a short period of time and then it wanes. A couple of times when I was very worried about my husband I thought of letting people at work know. One of my friend said if they knew they would be more compassionate. My other friend told me to tell who I felt comfortable telling and not to feel like I was forced into telling. I decided not to say anything . Shortly later a co worker had a serious illness and my co workers continued to complain about her work performance. I want to control my life. I don't want my co workers controlling my life. I can imagine them saying ," oh she's not herself today because of her husband, or she made a mistake because she is worried about her husband. I'm a pretty good actress no one at work would guess my husband is seriously ill. And since I work in the medical profession my secret is safe because of HIPPA and I have chosen friends wisely. My friend who told me to tell who I felt comfortable telling also has a husband with a serious illness. She also has only told the 2 supervisors, myself and our other friend at work. Remember once you say something you can never take it back.

Judy, im glad you're not depressed. Dont let them get to you, its just they don't understand, and arent able to understand. When i first got hd, i would try and tell my girlfriends what it really meant, and how it was affecting me. They started backing off from me, they just couldnt understand. Eric said something to me at that time that really helped. He said they are just normal people, with normal lives. He said think about how long it took you to fully grasp what it is that you have, it took months. So he said, they just can't even grasp what it is you are trying to tell them, and so they avoid you. He said it isn't that they don't care, they just can't grasp what it is that you are telling them, because hd is just so big to comprehend. He said get your support here, where people understand, and just try and talk about normal things with your friends. And that really did help. Hey Judy, i think you're a real trooper. You have gone through a lot, that most people can't even imagine, nevertheless sympathize with

that what i went through hun i call it mind racing going ova the same stuff and no matter how hard you try it doesnt stop they gave me seroquil, and it did stop the mind racing

Thanks Barb, I think that you are absolutely right. I do try very hard not to talk about it much at work. It's a very small office and I've been there for 21 years and 2 of my coworkers have been there atleast as long so we pretty much know everything about each other so I was a little shocked when one of them was kind of avoiding me, but I agree with you in the fact that she(they) have no clue about HD.

Judy, the avoiding this is kind of like this. When there is for instance, a death, some people know how to talk to you, others it's like, oooooh, best to avoid that subject so they don't upset yout. It's not you hon, it's just their coping skills, and i'm sure they're trying in their own way, they just don't know HOW to try, see what i mean?



Edited 2 time(s). Last edit at 07/30/2011 10:24PM by Barb.

Life is hard, HD makes life overwhelming. Different people cope in different ways. There is no right answer for everyone. People all make choices and decisions that change as their lives change. What may be right for a caregiver or someone with HD changes as the responsibilities and symptoms change. In speaking from my personal experience when my husband was first diagnosed with HD I confided with a couple of friends and felt I did not need counseling or medication. As my husband's symptoms changed I found I needed to see a counselor and psychiatrist. I also needed to start a low dose antidepressant. I have continued on the low dose antidepressant for several years. It doesn't mask my feeling it helps me to cope and focus. I choose to see a psychiatrist and counselor because I value my life and career. I know that in the future I may need to take time off from work due to stress. I know that the stressful time will probably be if and when I have to put my husband in a nursing home. I wanted to see a counselor and psychiatrist to help cope, with my husband, my life and work. I wanted them to know me and my situation so that when the time came I would have their support when I would need to take stress leave.

I disagree with Fred taking medication is not like drinking to solve your problems. And saying such a statement limits peoples options. I only post rarely, so because I am not a regular my opinion or insights may not carry as much weight for other people as say Fred's opinion. That is why I feel Fred you should consider what you say. Some people may be swayed by your opinion. No opinion is humble you either have an opinion or you don't. These are my my opinions and views on life I stand by them.



Edited 2 time(s). Last edit at 07/30/2011 10:54PM by Debra.

I agree with Debra about medication. At any given time, about half of HD caregivers are on antidepressants. Depression can be situational but then it becomes biochemical. You want to (quoting Barney Fife here) 'nip it in the bud' so it doesn't become chronic and difficult to treat. As Debra said, your needs change over time. At one point it was helpful for me to chat every morning in the old MGH HD chatroom. Then it wasn't and I started this site along with Steve and our friend Cristy and that was helpful. Then I needed medication and a therapist. I took medication for a brief time and am now finishing up with the therapist. With two at risk daughters, I worry about the future. If one of them were to get sick, I'd be back on meds I am sure.

There is no need to feel bad when help is available. It is not noble or better to 'tough it out.'

Marsha, posting on Steve's computer



Edited 1 time(s). Last edit at 07/31/2011 08:12AM by SteveI.

Thanks for that Debra. I work in roughly the same place as my husband did and with my at risk son. I've been lucky that most of the men I work with want to understand HD. I often run into those who worked with my husband. They all ask about him and tell me they're praying for him. I don't voluntarily talk too much about the situation because the men I work with honestly do have their own serious situations. One is 70y/o and can't retire because there are others who depend on his support. Another has had a newborn grandchild with serious complications that he's very worried about. Another is trying to take care of a brother who had his right arm amputated and after a recent stroke has become paralyzed on his left side. These are the "normal" people I work with. I seriously doubt that I could be any support to them at all if it weren't for the fact that I too take a low dose antidepressant. I have had clinical depression in the past and Fred is right that it's nothing like the depression that comes with taking care of someone with HD. However in order to take the best care of my husband and do the best job I can at work I have to take the best care of me.

Audrey