Depressed

[lgelb]

No CALS should feel guilt for being sad, or told to perk up!

You're right, no one should have go through this. But don't confuse being frightened and feeling overwhelmed (who isn't?) with not "being the caregiver he deserves." You absolutely are.

 

[Narrowminded]

You feelings are very normal and very valid. Not all counselors are good for each person. I too tried counseling and did not feel it was a good fit. Mostly because unless they had an immediate family member that they took care of, they don’t get it.

You are doing an awesome job and know that we are all here behind you supporting you.

Hugs

 

[ARCG]

Thanks you all. I am feeling a little better today. It’s like I go through a period of grief with each loss. As you say, not many people get it and I need to remember that. My husband thinks I let myself get dehydrated, so I am trying to drink more water and see if that helps a little. I know the sadness is here to stay, but we manage to get the most out of every day anyway.

The advice I get on this forum is spot on and I appreciate it very much.

 

[wishmobbing]

I've been thinking about grief as a concept and I feel that so many more things in life make you grief on one scale or another. So true about each loss, each step into hopelessness.

Glad you're feeling better today. Your husband might be spot on, crying dehydrates.

 

[affected]

There is no one size fits all, and we are all so different. It is why I find a place like this is so effective - all the different sizes can be compared to your own situation and you may find what fits by seeing the differences here

Many CALS take an AD and find it incredibly beneficial and should never be made to feel inadequate for doing so just because another CALS didn't take one.

For me, I reached a point where I felt like I was constantly screaming inside. That is still the only way I can describe it. I went on a low dosage of zoloft and I felt completely 'myself' but minus the screaming. I still felt everything, I was not in any kind of fog or numbness or haze. I still felt so sad, terrified, and even angry that this was all happening, but I could keep my nose above the water level.

I also saw a counsellor that really worked well with me, and I talked and vented and ranted, and got amazing tips here and on a private CALS fb group.

So for me it was a combination of all those things that helped me with that emotional side.

And some days just are better than others - the tide of grief does ebb and flow and there are some huge crashing waves out of the blue too. That I think is where, for me, places where I could talk about it with others that understood really made a huge difference.

I hope you can find the right combination of supports, because this sure as sh!t ain't an easy ride!

 

[ARCG]

Yes, I think I am (we are) in a continuous state of grief. I have experienced grief before and this is so overwhelming because while in a normal state of grief as time passes one learns to cope, but with this, time doesn’t help, it just causes more grief.

I so get the ‘screaming inside’ analogy. I think the Lexapro helped with that, but it is back, which makes me think I need something else. The question is, when to have time to find a doctor, my gp doesn’t feel qualified to prescribe a change and I just don’t have time to research another doctor. I will have to ‘make’ the time, I guess.

Our experiences are all a little different, as you all say, And it is so helpful to get the support here that we have to make our own path depending on our circumstances. I had no medical background going into this and now feel like I could write a book, except I am a terrible writer.

I kind of wish I could close out the outside world, as I think the most stressful days are when everyday life closes in with all its issues that have to be taken care of in order to maintain the quality of life my pals has now. The best I can do is tread water.

 

[ARCG]

Another busy day. Just fed my pals and have him settled for a few minutes. Have a ton of things to do but having a hard time getting motivated. Feel better than I did last week, but just no energy. Another aide change yesterday, new one nice but had to explain how are equipment works again. She may not be permanent one. It used to bother me that I knew more than the health aides, but not anymore. It just makes me realize how rare this disease is.
Have been fighting with the insurance company to pay for a part for the wheelchair. They finally agreed today, it should have been paid right away and was denied in error. Small victories. But makes me wonder if they deny things automatically hoping we will just go away. Sometimes I am bitter but try not to be.

 

[affected]

It can be hard to be training new staff can't it. It feels like they should just know everything, but it is true that this is a rare disease and looking after a PALS is really different to looking after most illnesses.

I found having to constantly be fighting the little things like that wheelchair part, hours we were eligible for, good workers and on and on would really deplete my precious energy that I wanted to spend doing things for Chris personally, or just being with him in some nice way.

I'm afraid they very likely do deny many things just to see how many they can get away with. One wonders how much it saves when they have to deal with someone fighting it, but then maybe they get away it so many times the odd fight is insignificant to them. Sadly to us, that is another huge drain on our reserves. xxx

 

[ARCG]

Yes, you are right. Handling everything is hard enough without having to fight insurance companies for benefits that we are entitled to. The heartlessness of these organizations is amazing, actually denying benefits that are included in our plan. When I talked with the social worker at the clinic she told us to ask for an ‘advocate’. The ‘advocate’ told us she has no control over anything to do with benefits or navigating the insurance bureaucracy and she ‘couldn’t help us’. What is her purpose then? I have learned we all have to blaze our own trail through this. It takes precious time away from what’s left of our life together, and it makes me so mad sometimes, I could scream.