I feel broken and empty inside

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Feb 2, 2021
San Andreas
I am now feeling the tick tock of the als clock. My husband is declining. He is getting set up to do MAID in the next few months.

I am having more issues than he is. He is actually happy now. I suppose because there is an off ramp before he loses his dignity .

He says he naturally is afraid to die, but riding the als bus to the end to him is absolutely terrifying.

Now for me, I'm in a constant anxious restless state. I feel sick, I can't relax. I don't eat hardly anything. My brain feels fried.

Oh and now I have twitches all over my body..I cannot imagine losing him, yet it is happening.

For some reason every time I drive I end up crying the whole way. (My only alone time) I feel like I am not doing well at all. This disease is taking my husband and my heart along with him.

I don't have the desire to look good, fix my hair, it's even annoying to shower..

Is this even normal? I can't quit or throw in the towel; I am it, the only caregiver.

I helped take care of my mother with alzheimers,and did take total care of my father with vascular dementia. I got tired and annoyed, but never felt this awful.

I guess it just feels better to vent it somewhere.
Have you considered antidepressants and some counselling?
Honestly, when I was a CALS, I talked online to other CALS daily (well at night before sleep) and found that really helped, being with others in my boat.
I also took an antidepressant and saw a counsellor regularly.
I always feel that they were the tripod that kept me upright - peers, meds and counselling. The counselling focused purely on how I was coping and strategies to help me cope.

You can vent here, and if you are a FB user, I help admin a private CALS group. We can contact privately for details.

No one should walk this alone.
I'm sorry, Zephyr. It's a hard train to be on, and it sounds all too familiar for you.

Just a note that DIY hospice/self-directed death via CALS is an alternative to MAID. Of course, everyone should do what they're comfortable with. I advise talking through all the options.

Above all, make sure you are still talking about the issues that matter the most as a couple. When you have those done and dusted, you might feel more control over the situation. I know, we don't control ALS as a disease, but there is much about our response that we do, that really makes a difference in length and quality of life.

Dear Zephyr, my heart goes out to you! You sound frazzled and burned out. I guess you can call it normal in a situation like this. Being the only caregiver is just A LOT apart from the obvious grief. You have a clear view on how you don't totally managed to take have yourself, too. You come here to vent. Grab all the help and support you can get.

It's a good thing your husband seems relieved to have an off ramp. If he's the emotional stable right now don't hold back you tears in front of him. Give him the chance to comfort you, to be a caring husband before he checks out. I found my PALS a pillar in dealing with the grief of losing him.
Zephyr, I take the anti-depressant and find it helpful. I have also talked with a therapist. I am working on trying to remember to touch my husband. To hold hands and hug. I am also waking up at night and coming down to the couch near his hospital bed...just to be near him. Your husband seems like he is strong and courageous. You must be proud of him. I think what you are going through is normal, has been for me anyhow...but with medication and support you will find strength. There is a saying that some people's shadow remains long after they have left the stage. I think that will be true of my husband and sounds like it will be true for your husband as well.
What is the DIY Hospice/self-directed alternative to MAID?
That option is getting a morphine prescription from a doctor (your primary care doc, ALS clinic, or any other doc that has seen the PALS in the last year) and the CALS dosing it to the PALS' wishes and comfort, for what is generally a don't ask/don't tell self-directed death at home. Codeine for cough can also be helpful if not already receiving it.

The doc in question can then sign the death certificate based on a known ALS diagnosis. Of course, the state's advance directive should be completed beforehand, and therefore available to paramedics, etc. who show up as a matter of course, when the PALS is not enrolled in hospice.

I have written about our experience, in which we got final rx from the PCP, without any ALS clinic contact (since we had severed ties there 2 years before death) and how to withdraw BiPAP here and am always available in posts and PMs for any questions.

This kind of self-directed death can also be accomplished while using some hospice agencies but is not necessarily stress-free, depending on the state and agency, so the DIY option is one that is always worth consideration.

As for what you can get out of the hospice agency that is missing in the DIY option, I'm kind of living that right now. My dad went on home hospice last week, and I'm staying with my parents for the duration. The hospice my mom signed on with is the largest and most respected in the area. It is a joke. But you can always interview agencies in your area and see if one strikes you as a good death partner (in every sense of the word). Some here have gotten a lot out of that relationship.

The point is, you have options.

For Australian members, the one critical thing is to register with Palliative Care. If you are registered as palliative here, no investigation happens when the person dies. You can simply call your funeral home of choice when you are ready. You don't have to call them immediately.
They will take the body to your doctor and have the death certified.
Truly simple.
Your doctor prescribes the morphine and you administer yourself and you don't need to keep a record of dosage.
Just noting for people who may search and come to this post another time, not to hijack your situation.
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