CALS and Mental disorders

[kmarie]

I will make this starting post short. I am a CALS, and I am bi-polar. I am terrified that my disorder will prevent me from giving my husband the care he deserves. He is still doing well and is more a caregiver to me than I am to him.

Has or does anyone else relate to this.
Thanks
Kay

 

[soonerwife]

Sorry to welcome you here and so sorry about your husbands dx. You have found a great place for support.

 

[scaredwifetx]

So sorry to welcome you here. I don't know what to say about your situation. My mother was bi-polar. We made sure she stayed in her medication. I can't even begin to understand what you are going through. I do hope you have a counselor that can help you and your husband.

 

[Nuts]

When you stay on your medication, is your condition controlled?

I don't know about being bipolar, but many of us worry about medical issues that might interfere with our caregiving.

At one point in my life I might have said that it's time to be the strong one. Boy was I arrogant. I hope you are able manage your illness so that you can become the caregiver. ALS just doesn't give us choices.

 

[kmarie]

Medication does help to control it, but stress causes it to be harder to manage. I find I become extremely irritable quickly.



Kay

 

[kmarie]

I do not post on the forum very often because I don't feel it is private enough to share what I am feeling.
For example I saw my PALS subscribed to my thread, so now I am uncomfortable sharing.
I don't know how to remove it or I would.
Kay

 

[scaredwifetx]

Sorry Kay! Having a support system is so very important. I hope you can post here anytime you feel the need to. You can also private message any of us. I will put you on my friends list right away. Please feel free to message me anytime you feel the need. I understand that there are times that we just need to talk to anyone who really doesn't know us or family members.

 

[gooseberry]

I would say this......being a full time caregiver, dealing with all the financial,emotional,social issues and not sleeping will cause anxiety and maybe depression.....even if you had no mental health struggles before.

See a counselor and a neuro so you keep taking your meds. You may need a higher dose. Its okay. Properly prescribed, you will be able to function and caee for you both.

Also, I would look for caregiving help now. Even if just a companion for a couple hours a week, it is good to get someone on board.

I just found care dot com they can do housekeeping,meals,personal care, etc. The fee is different depending on what you have them do.

 

[affected]

Kay do you use facebook?

There is a private closed group called ALS Caregivers there where you can talk in complete privacy. This is important and you have the right to discuss your concerns and be supported to make good decisions. Send me a PM if you need help joining.

 

[gooseberry]

You can also block your spouse on here. You need to go under your profile.

 

[affected]

Steph I've never blocked anyone here so am not sure how it works exactly.

If she blocked her spouse, that would not block him from the entire thread, only her posts? If someone then replied in the thread and quoted her text he would still see it? He would also see responses to her?

I think if there are sensitive issues to discuss it's better to take them to a private closed group.

For everything else, this is definitely the best place for support that I've found online and I've been or still am involved in a lot of support mediums.

 

[kmarie]

My husband apologized, and explained he saw the title of the post and went to it because he thought it would be helpful to me. He subscribed before he realized it was me. He has since unsubscribed, but I still feel weird.
I tried to PM someone yesterday but I couldn't figure it out.
Thanks for all the responses and I will check a few things out.
Hugs
Kay

 

[scaredwifetx]

Hi Kay! At the top of the screen is a tab titled "USER CP, Click on that tab and once scroll down to private messages on the left side, click on that an you will be where you need to be to send private messages. I think you need to know the user name for the person you want to message.

Keep your head up high! Anytime, you need to talk let someone here know and as Tillie said there is a private Facebook spot. I don't use it as keeping up here is enough for me

 

[affected]

Maybe you haven't done enough posts for private messages yet.

If you use facebook, search for ALS Caregivers and request to join if you you would like that option of a closed group.

It was lovely that your hubby let you know that he hadn't meant to pry, it's pretty easy to stumble in somewhere and then realise after

 

[4tloml]

Hello Kay. I haven't posted for quite some time here--mostly been busy as a caregiver for my PALS (husband) and once again for my 89-yr-old mother because my sister could no longer help with her. But your thread prompted me to post. I know this is a public forum; however, I am open with my bi-polar diagnosis because I think the only way to end the stigma and shame too often attached is to bring it out into the open. It is like any other medical condition that improves with proper treatment and care.

I relate to your concerns--they are very real. What is working for me is returning to my therapist (every other week now) and seeing my psychiatrist every month now instead of every quarter. He spends a lot more time with me to ensure we stay on top of my medications and to short-circuit any mood shifts. Self awareness is really key, and I find that easiest to do by keeping a mood journal. Any change up or down needs to be addressed right away, before it gets out of hand. A doctor once described it as a trampoline--the higher you go, the lower you go, and vice versa, so the goal is stability.

My therapist is my life coach. She helps me maintain perspective, including the importance of caring for myself. My biggest challenge is the thought of invasive ventilation, because sleep is so important for stability and we don't have the funds for a nightly caregiver. I suppose we'll cross that bridge when we come to it. Which is something I'm learning to do--deal with today first. Plan for possibilities, but not to the extent that they remove you from the present. Life is always a balancing act especially when dealing with ALS OR Bi-polar disorder. Dealing with both makes that balance a little more elusive, but all the more critical.

This forum and the ALS Caregiver Facebook site are truly lifelines, providing both practical information as well as support and encouragement.

My PALS has been my rock for more than 32 years, demonstrating his love through all my highs and lows. He is the light of my life. Now it's my turn to put love into action by caring for him...that means taking care of my illness as well. Kay, please message me any time. You can do this, precisely because of your love for your PALS.