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Loverly

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Lost a loved one
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CA
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Orange County
I have had a diagnosis of depression for about 10 years. Most of the time, medication helps, but sometimes it can overwhelm me. I am experiencing one of those times and it's making me feel horrible. I am becoming debilitated myself.

Last night I could feel the irritation building up while I was helping K in the bathroom because she takes so long to get in and out of there. It's irrational, I know, but it's getting worse. I just feel so guilty and sad that I could feel so upset about something over which none of us has any control.

Sometimes i feel I could actually kill the dog for barking too much.

i'm in my bedroom now, because the aide is here, and i'm just crying and crying.

I don't want to go to a psychiatrist. I feel that there is a risk that it could become worse by tinkering around with medications.

I also feel horrible. I can't believe how hard it is to move a tiny lady like my PAL. Every time I get over one pain in my back or shoulders another area flares up. I'm tired and frustrated and I feel like a real heel.

I know none of you can change any of this, but i fear keep it to myself will be worse. Kind of like an accountability you know?

Jen
 
It can be difficult being a caregiver... regardless of whether depression is at play. First, many here have reported that bouts with depression have been eased or stabilized with medication. It is worth seeking medical help, if only to see if you can find something that gives you relief. You might want to start with your General Practitioner and explain the situation you find yourself within.

There are times when I want to be the barking dog. Getting up in the morning... that used to take less than a half an hour to get ready... now takes about 2 hours. It can sometimes become quite frustrating... and especially during those times when I'm tired and my back hurts (I broke it in 1999 while rock climbing). During those times, I sit down. It rests my back for a bit and it gives me time to remind myself that neither of us wants to be in this situation. Neither of us asked for it and it is not fun. But it is what it is. Were the situation reversed, I have no doubt that my wife would take every bit as good a care as I try to give to her. In fact, when my back was broken and MY future was somewhat unknown... she was there, helping me with what I could not do for myself.

I can't tell you what your "magic moment" is... you know, the thing you do that brings to back to recognizing that both sides, PALS and CALS, have challenges. But for me, it is the certainty that no matter how bad it seems, we're going to tackle this together. And yes... I'll have brief moments of wishing we were as we were before... but it serves no purpose to spend time and attention on a wish that can't be met. And so I again return to that which we can do.

I hope this note finds you feeling better for having written... and that you find that which you need that can help you find your own balance in the situation you both are living. Also, before I close, consider identifying what you are currently doing that is so difficult. Let us know. Perhaps we've been there and have found a way to make it somewhat easier. Above all, keep sharing. You are not in this alone...

Jim
 
Please do keep talking and consider who is the best professional to get help from.

You know there isn't anything bigger than caring for the person we lover through ALS. It's as big as it gets. It's not like you are feeling all these things when there is nothing significant happening.

CALS burn out is also very real. Needing help of any kind is no weakness, it's a fact.
 
Please get some help. Explain your fear of it getting worse by tinkering, but clearly what you're doing now is no longer working. It also sounds like you need a break. Is there any way you can get a day or two away?

I used to get frustrated by how long things took with my mom, largely because all I could think was that I was losing time with my husband. The universe has a perverse way of headslapping us--he now has ALS and will soon need much more help than she ever did.

Do you have any devices to help move K? Have you worked with an occupational therapist? It's so important that you take care of yourself so that you remain able to care for her. I know, it's always about them, but if we remain strong for them then we will be in one piece physically when they no longer need us. Of course, I'll be twice as big as I need to be by then, but that too shall pass.

Big hugs. I hope venting helped a bit.
 
It is hard having feelings like that, but I guess they are to be expected. If you can get away for counselling then I suggest that you do, or take a walk around the block. I take Tim and myself for physiotherapy once a week, and we get a massage therapist into the house once a week as well. I ruptured a disc in my neck many years ago that required surgery, but my physiotherapist is a magician and has kept me going all these years. My sciatic nerve started acting up in the last couple of weeks so she is working on that. I rarely get a chance to get away on my own, but I started using lifts as soon as it started getting a little bit difficult, and know that I would be unable to keep going with out the physio and massage. I saw my doctor a year ago about my anti-depressant and we tried increasing it, but it didn't seem to make any difference so went back to the regular dose. Mine actually helps with that all over pain. Hope that you find what will help you.
Paulette
 
your feelings are very valid, and not unusual at all, if that gives you any comfort. so many of us--probably most-- go thru hard times as a cals. we all snap, yell, get angry and cry. you have an additional burden on you with the depression you were already battling and I can only imagine how much worse that makes everything.

You need a break--even if it is just a few days. any you need weekly breaks. You must set aside time for yourself, because of your depression. that is an illness and your health is extremely important too. you matter. you have an aide, that is good. is there anyway she could stay for an over night or a weekend. anyone else that could help out?

bobbi
 
>Please get some help. Explain your fear of it getting worse by tinkering, but clearly what you're doing now is no longer working. It also sounds like you need a break

Ditto that!
 
Oh Jen, I'm so sorry about the sad state you find yourself in.
I think the hardest part of any process is acceptance. So, you have done the hard part. Next part will be easier...all the awesome advice here will give you strength to seek out appropriate help. Getting help when we so need it is a sign of courage, and you've shown you have bucket loads of that.
Take care of YOU Jen...
God bless, Janelle x
 
Jen, please do what you need to do to take care of yourself and K. That includes lightening your load wherever you can, and definitely not lifting more than you can handle. Do you have an electric lift? If not, do make that your next move [pun intended].

Unless your breaks interfere with your caring for K and you can't get back to baseline, I agree that there are other ways to get over the hump besides tinkering w/ the rx. After the chat you two might need to share your feelings (I daresay she's feeling guilty, too), share something that makes you both happier. You are still the people who you were, who want to be together.

Of course you would rather be with her before she fell ill. There is no guilt in feeling that. It is only a problem if you can't disengage from it when reality knocks on your door and demands action. This is the only life you have now. What you do with it is still up to you.

Best,
Laurie
 
Jen, can i recommend going for a walk, a run, a bike ride? Something to get your heart rate up and hold it up for as long as you can. In my past struggles with depression it was the thing that helped me the most (outside of faith) and relieved the stress from me. Try and find 15 minutes to an hour to push yourself.

I know it is not a fix all but it is a help. I am sorry for what all the CALS have to go through and think the frustration, anger, hurt, captivity, and extreme sadness is unfortunately what this disease does to you as it destroys us. Do not let it win over your love for K.
 
>i'm in my bedroom now, because the aide is here, and i'm just crying and crying.

the whole thing sucks but IIWII ("It Is What It Is!") ...

see if you can find a non-ALS volunteer job -- helping others helps ...
 
Thank you all for taking the time to read and comment. I'm definitely in a rut right now that is just keeping me going in circles.

I feel pressure from so many sides. My dad and Kathy have stopped opening the mail creating a lot of turmoil. I spent a week trying to get Kathy's prescription coverage reinstated because she didn't pay the bill. There are 3 medical collections notices down on the kitchen table that came yesterday. :-/

My sister is mad that I didn't "like" any of her facebook photos of their family trip to Hawaii. Even explaining to her that I couldn't look at those pictures of her having fun while I sat on the phone with medicare, didn't stop her pouting.

My brother walks in the door and his first comment was negative (It stinks in here!). I could have happily destroyed him. A man in his 30s should have some sense that two incontinent people might make some uncomfortable smells, and feel badly about that!

I don't think I can find the energy to take a walk even though I know that I should. For those that don't know, my father (kathy's husband) is also in decline, fully incontinent, peripheral neuropathy, failing kidneys and just this week his toes started turning blue. He refuses to see a doctor. His blood sugar has been over 200 every day this week, and i'm pretty sure he has a raging UTI or kidney infection.

He takes me for granted something awful and I've taken to snapping at him when he does things likes getting comfortable on the sofa and then asking me to wait on him. But a peevish attitude seems to be the only way to get thru to him.

*sigh*
'
all i can do is complain. i'm getting sick of myself.
 
Jen,
If you can't do it yourself, maybe a third party could bring your sibs further into the "helpful, not hurtful" category? You can't take care of both your dad and Kathy as things stand. I'm sorry I didn't realize that's where you were.

Also, there should be a home health benefit from Medicare for your dad, if you get his doc to write an order. Explain you can't take him to appointments and his diabetes is currently, as near as you can tell, uncontrolled and he needs wraparound care-- never mind that he is noncompliant, if someone shows up, throw a fit if you have to and get him looked at/lectured to. The last thing you need is diabetic complications that can get very severe very fast. The home health agency will have a social worker who can discuss other resources with you.

Depending on whether he is in FFS Medicare or an MCO and what plan/ACO he is in, your city may also have a PACE program, nurse practitioners or other resource to get him back on track. House calls are back in. Tell your sibs that if they don't help induce him to help himself, you're going to hand him off, because your caregiving capacity = 1 pt. Seriously, that might get their attention. I don't pretend to get how you're not all in this together, but something has to change -- they need to contribute time, money, something that improves life for you three.
 
Jen, I didn't get to this point until after Chris passed and I had my brother here in crisis.

I got on the phone and I cried copiously (I wasn't faking it) and kept stating most definitely - no I can't do this even for one more day, no I can't, no I can't (more tears).

It was amazing how much response I got and how helpful they were. All the times I did stuff for Chris I would be on the phone as the one in control and advocating. I was treated well, but very differently to someone in crisis.

Laurie has given some good leads there on where you may go, I don't know the system there, but I really seriously say - let it all out, be emotional and be firm that you just cannot do it. I found that as long as they can put things off a bit and keep you doing things they will.

Now let me say - caring for one person is so hard. Caring for two is just too much. I tried to have my brother here with a different neurological condition while I had Chris with nearly no mobility, no arms and no speech. We lasted only a little over a week before I was nearly undone and had to put him into respite (my brother not my husband)

So do not feel bad that you can't do all of this alone!
 
all i can do is complain. i'm getting sick of myself.

beautiful Jen--it feels like that, but is not true. sounds like everyone is using you because you are not standing up for yourself. your parents are not the ones to cry to--those sibs are. Logic works better than anger and you have to set a line in the sand. (and stick to it.) don't have to accuse or yell--just state the facts--you are at the end of your rope now and either they step up instantly and help or you will have to step out completely. come up with a plan for their assistance. if it is only money--then use it to hire more help.
 
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