Depression

[rachelg]

Hi All

As a wife and caregiver, I feel low. Not through exhaustion (though I am) not through stress (though I am) not through being angry at this disease (though I am) - its something else. Sadness, sorrow, fear - I dont quite know!

I have thought about discussing it with my GP but I know he will say "its to be expected" and want to whack me on anti depressants. I don't want councelling - I have tried that and it wasnt for me - I just don't feel that even a qualified, experienced councellor can truly understand unless they have lived through this.

I am a strong person, I know that but just right now I feel "out of sorts".

Are any other caregivers taking meds to help or do you just ride the lows and hope to pick up?

 

[themommy]

You know - its hard. This thing can, not only harm your loved one who is suffering, but also harms everyone involved..I feel like I am just a whacko - most of the time. Cry alot - can't sleep...You know the routine. But I have started walking with my daughter at night and it seems to help. Even if it is just for a short time.

Try Hospice counselors...they get it....((Hugs))
Amy

 

[Danijela]

I just walk through it all. I have never tried antidepressants, I do not think they would be appropriate for me neither short nor long term. I too had some counselling long time ago, just after L diagnosis, it did some good at that time. Have you read about 'anticipatory grief'?

With me, I notice a really strong correlation between physical exhaustion and low moods. Dani

 

[rachelg]

Dani - I think it probably is grief.

I stand sometimes and feel like a person looking in (if that makes sense) then I realise that this is our life.

Reading has always been my solace - but my concentration is gone for the moment and reading humourous fiction (my usual favourite) is just not my escape for now.

"man up", "pull yourself together", "get a grip" - ha thats what my old gran would have said - "shoulders back, head high"

Amy - "whako" - me too.

Our life is calm - thats whats shaken me I think - there is no more equipment to battle for, no more funding to argue for, no more alterations to make - nothing to sidetrack my wandering mind, the stresses are just in my head - just the routine now to keep life calm. Shouldnt speak too soon I guess - oops now ive said it, you wait - something will break!

 

[Tofinodays]

For almost two years after the onset of symptoms, I continued to work long hours in a demanding job and try to meet all of my husband's needs during the night on my own. He resisted support workers and I felt that the only way I could survive was to cut myself off from my emotions and just "get the job done" on my own eventhough I knew that I had to deal with the emotional part at sometime. Eventually I crashed. I became unable to work and instead of crying, I felt completely and utterly dead i side. I could barely get up to make meals eventhough my husband is dependent on me. I lost my appetite completely and the weight started dropping off. I was finding it hard to drag myself to yoga, the very thing that keeps me going. I made a doctor's appointment and was diagnosed with clinical depression which had not been the case earlier. is I am now on antidepressants (the first we tried only helped with sleep but not the depression) and feel almost like myself again. I am able to support my husband in positive ways and deal with the left curves this disease continues to throw. I have increased my exercising and started to see a grief therapist which is very difficult but I believe, necessary for me.

 

[dreagan]

I have tried to keep an exercise routine. Some days it slacks off and I can't help it -- something in the house makes it impossible to find the time -- but the more I make the time for it the better I feel. I also think it helps to talk to someone, whether it's a friend, relative, or a counselor. Just airing your feelings can make a big difference. For me, exercise and talking help a lot. Steal some moments for yourself and do something that makes you feel good.

 

[Danijela]

Rachel, I understand the feeling/experience of looking in from the outside. I feel it too. I also relate to 'dead inside' of Tofinodays. Yes, there is a difference between clinical depression as described above, and low moods. I think I am in the latter category. I also feel that my life is suspended, and that eventually it will have to continue in some other way. This is wrong, and it makes me feel guilty as THIS IS my life, this is all I have got. I think in your case Rachel, that fact that Mark has a trache is an additional 'complication'. Because he may or may not decide to use it full time... Maybe I am assuming here, if so please excuse my comment.

Exercise, yes. I have joined our local private health club. Will be taking our son regularly, and try to make time to go alone because that is what I need more than anything else. . Laurence came too on Sunday and watched us swim in the pool. It is wheelchair and disabled friendly place.

 

[cubcake]

Oh, I hear you! I sleep an average of maybe 3 hours a night. Part of it is worry, part of it is total anxiousness, and part of it is that these night time hours are the only time I get to think. I'm working full time from home at the moment, and all of his care is from me. I truly wouldn't have it any other way, but it's really a lot! I went through times when I would cry at the drop of a hat and I couldn't concentrate on anything. Driving scared the bejeezus out of me because I was so stupid on the road. I really thought I was losing it.

My doctor prescribed Atavan to help me sleep. It certainly does the trick, but like you, I don't like taking something like that, if I don't have to. During the time I was crying all the time, I used to quarter them and take them during the day and they really took the edge off. I did that for about a week. Now I take one maybe twice a month, but knowing they are there if I need them is the crutch I need to keep me on an even keel.

I think that this thing is like being left afloat in the ocean. Sometimes you have to fight huge waves and paddle like crazy just to keep your head up. Other times you are pulled to and fro by the current. And sometimes, if you get lucky, you can grab on to passing driftwood and let it carry you long enough to catch your breath.

So just hang on the best you can, and take advantage of whatever floats by. And do let the people here help you through this. They are truly the life preserver that we are looking for.

Throwing you a set of Water Wings! XO

 

[skipper66]

My dad who has ALS lost his wife (my mother) fifteen years this coming up July 6th. He was encouraged by a neighbor to see his doctor about getting on some medicine for depression. Dad was was relunctant to go but he did and they put him on a low dose of paxil. It helped him tremendously. He got his appetite back and was able to adequate sleep. He also starting doing alot of walking which greatly eased alot of his anxiety. Good luck to you and please don't be ashamed to go to a doctor for help if you need too. My dad only had to be on his medicine for just a few months before getting back on track. Kim

 

[Barbie]

Hi Rach-
I can really relate to what you are saying--I guess most caregivers can. I too was feeling very sad--weepy and not eating. I do think it is anticipatory grief. I try not to think about losing him, but some times if he is feeling bad or choking or coughing I am overcome by fear and grief. It is all too much sometimes-- too much to do, working outside the home, working inside the home, kids, money issues, lack of exercise, stress...argh! I have lost myself somewhere in the last 5 years.

I saw a counselor for a while, but spent more time trying to explain ALS and terminal illness and emotional liablilty then got anything out of it. Agree, hard for most counselors to understand the situation we face as CALS. I finally got my GP to give me a low dose of anti deppressants. it has taken the edge off and stopped the weeping and allowed me to feel a little happiness again. I am very glad I went on the drugs because I know I am a better caregiver/wife/mom/boss because of it. I don't plan on taking it forever, but for now it helps.

Love you sister!

 

[jamiem]

Dani, I am a psychologist who now has bulbar ALS. I stay very concerned about my caregiver although I am still mobile. I have specialized for years in grief counseling. I believe you are grieving and my lord why wouldn't you. You must still consider your own needs, surround yourself with family and friends and just love yourself through this difficult journey. As an ALS person and my CAL, we have found it necessary to stay in the moment and stay close with our faith. I am here for you if you want to reach out. You must do what you are comfortable with and if its not counseling thats ok, just keep talking to someone. jamiem

 

[joni51]

Caregiving is one of the hardest things i have ever done. I get ill, tired frustrated, but in the end I know I tried my best and the hardest to help my husband through this. It is so difficult for all of us, Pals and Cals.

 

[vzandt]

I'm crying.

 

[jamiem]

Crying is good and necessary. Please take care of yourself. Jamiem

 

[AlabamaGal]

Thank goodness there are others who understand. Two days of sadness, crying, and frustration. I am completely overwhelmed.