Many of you know I have ALS, a progressive muscle disease that is fatal with a prognosis of 2-5 years. BUTI DON’T LET THAT GET ME DOWN. It’s what led me to witchcraft and my spiritual awakening. My husband, Bill, has always been sorta negative, sarcastic, and cynical. It used to be somewhat endearing. With all that’s happened to us over the past few years, he’s been more negative, understandably though. Now since being diagnosed with ALS this year he’s been much more negative. He thinks something or someone is out to get us. That we’re somehow destined for bad things and that bad things keep happening. Yes life has dealt us a shitty hand but I believe we have to believe that goid things will happen. That we are worthy of them and we should appreciate what goid things we do have. As I grow spiritually, I’m finding I’m connecting with him less and less. He’s so miserable and can’t even seem to find one positive thing in a day. I’ve talked to him, but idk if he’s not understanding or not willing or able to see any positives. Yesterday I didn’t even wanna be around him. He’s really bringing me down and I feel I can’t talk to him about anything that’s going on with me. I’m afraid that I’m going to "outgrow " him. I need to have people in my life who are positive and that i can talk to. You’d think my husband would be that one person! Maybe I’m expecting too much of him. He has to deal with all this as well as his own physical and mental health issues. And he’s my caregiver. He doesn’t talk to me about that stuff either. When I talk to him I barely get a response whether it’s something serious or mundane, like can we go to the store later. I get a grunt. I’m afraid my live for him won’t be the same ir there at all anymore. I can’t leave him. He’s the only one that takes care of ne and my needs will become greater over time. I’m just rambling now lol
I am worried about our future. Idk if it’s my expectations or me being selfish. I just feel lost. Thank you for listening and your support!
I support you @Sivonnah in your path of witchcraft and spiritual awakening. I know how difficult to live with someone who is negative… that’s the story of my life. Over the years I learned to be a healer, I am many things, but first and foremost always a healer.
You must take time for yourself, connect to your divine energy source, and continue your awakening. Try mirror work, spend time in front of a mirror every day, and just love everything about your body. Talk to your body and love it unconditionally, it’s amazing what this will do for you. These few minutes of healing each day will change your life.
Forgive your husband, and love him anyway. I’m sure this is difficult for him too. You are a beautiful powerful soul @Sivonnah and we are here for you… and always remember we love you!
With big hugs always
I’m sorry I don’t have any useful guidance to offer. I only have opinion. Like, I personally don’t think you’re being selfish, and… Well, I suppose I would also personally think someone who’s meant to be my life partner is meant to be more supportive than that. If my partner emotionally checked out of the relationship like that, I know I would be hurt. I would be confused. I would wonder if they’re still “with” me at all. I might even feel betrayed and abandoned. But those are just my personal feelings and I haven’t encountered such a complex situation. I could be wrong, and I don’t want to encourage any animosity between you. But I’m thinking perhaps that knowing someone else would feel as conflicted and lost as you do might offer some solace that the feelings you’re going through are valid.
However, what I can say with certainty is that you are wonderful. And that you’ll always have us for support and love, as distant as some of us may be. And that I hope these feelings of lostness get lost themselves.
@Sivonnah As a caregiver myself for my son, it’s not easy. You can become negative that you’re destined for bad or cursed. It’s draining mentally, your life is put on hold, you have a fear in your mind that says what if this happens, or what if that hapoens. It’s a constant worry that niggles day by day. And very often it’s the caregiver that gets little if no support.
I’m not taking your husband’s side, just I know how damaging it is, seeing someone you love struggle day by day, and the caregiver is powerless to stop it or change it, and can only support. It hurts and can cause mental health damage.
The way I got through was I was lucky to have a spiritual side and a rock solid angel (Loki) by my side, I also sought help, professional help, and did journalling to accept that fate hasn’t cursed my family, it’s just life, and it’s ok for my son to have a disability.
He’s doing fine, I’m doing fine. The whole family is fine. I think you’re husband needs help, professional help. I don’t know how you can do that for him, or if there are any other family members that can guide him to professional help, but he probably needs to sort through a whole load of fears and emotions, that are currently being left unprocessed.
Sending love to you both
Please know that non of this is your fault, don’t blame yourself or be too hard on yourself. It’s life, it’s the world we live in. You’re beautiful, your husband is beautiful, your family is beautiful. We are here.
Oh and if it’s any consolation, my hubby is always 2 steps behind me spiritually, but he gets there in the end.
@marsha I’m sorry you experienced so much negativity but you’re certainly resilient! I’m definitely going to start mirror work. It would be good to tell my hands and legs that I love them even though they don’t work well! I will take care of myself better. I will forgive my husband and try to be gentler with him and continue to communicate even if he’s reluctant. Thank you!
@starborn I value your opinion and your support! It’s good to hear from someone else that my feelings are valid. Thank you
@tracyS My husband was phsychatrically hospitalized the day I was diagnosed. He is in therapy and sees a psychiatrist. I went to therapy with him once. He doesn’t seem to realize or understand that he needs to be more proactive. He goes to therapy, comes home and it stops there. He’s resistant to change and he’s even said he doesn’t see what’s wrong. Not just about ALS, but our whole family dynamic. I can’t make him do the work, but I wish he would realize it would help him. He also has neurological issues, so I understand that generally things are “wonky” with his brain. I also can’t imagine how hard it is dealing with all his stuff and having to care for me. Fortunately I’m mostly independent, for now. I know he has to do the work on his own to feel better. I just hope he wants to. I’m trying to be gentler. I’ll keep trying to talk to him. I’ve told him he can talk to me about all of it. I’m happy your husband is walking the path with you! Bill is interested in what I’m doing, but he needs time to just get his emotions in check. Thank you!
I don’t want to say too much because I’ve been single all my life. I don’t wanna step out of my comfort zone to talk about something I don’t know much about. But it sounds as if your husband is deeply depressed and may be suffering from caregiver burnout. It’s not your fault, it’s just the way it is.
If you could get him to the doctor for himself, and get some antidepressants or something going, it would probably do the world of good. Also if you go to the AARP Website there’s stuff to help caregivers and give them some ideas for respite. I don’t know if you have to be an AARP member for that one or not.
Till then I’m sending you and your hubby much love. Keep on looking on the bright side of life!
I am sorry to hear about the difficulties of your situation. I hope being able to share your feelings in our community brings a bit of relief. I was reading about something called caregiver burnout which seems to fit some of the characteristics you describe about your husband. Also you mention he is newly diagnosed as well; I am wondering if he is grieving about his diagnosis as well as feeling burned out?
I am no expert in any of this, but here is an opinion. I think you have to focus on yourself first. As they say on the airplane, if you’re traveling with others, put your mask on first. Taking time for yourself, eating well, building your support groups, pursuing your spiritual side, finding outlets to reduce stress (meditation, soothing bath, etc), acknowledging your own feelings, all things it sounds as if you are doing. Apart from that reaching out to external groups or via your healthcare provider you may be able to find help; my brief search on the internet leads me to believe there are resources you can connect with that may be able to help you, and might help your husband, if he wants the help.
And don’t forget have a group of empathetic souls here who care about you (as do I) and who will continue to send positive vibes your way!!
As if anyone could keep up
I send my Love and support. Maybe the two of you can figure out your lives separately, but do it together. I know that doesn’t make much sense, but we all need to figure out ourselves first, then we can help each other. IDK old man rambling. My Love to you and your situation.
@Shadeweaver True, true, Loki’s not one for going in a straight line, or sticking to one road at a time. It’s a big bubbling pot of who knows what’s next
@Shadeweaver I agree! I just wish he would takebetter care of himself. I’m sure it’s just gonna take some time. In the meantime we have to remember to l9ve and support each other! Thank you
@korvo @Amethyst @tracyS
Thank you for your love and support! I definitely feel relieved sharing my feelings here.
My husband is on medications for depression. He neurological issues he needs help with. He was at neurologist today and he was less than helpful, but he’s going to a neurologist as soon as he can get an appointment.
My ALS clinic has lots of support including respites. I asked him and he doesn’t wanna go. We have 3 social workers with the clinic who are all available to both of us and they are working to get us more in home supports.
We’ve been living in survival mode for years now so I know we can get through this!
I just needed to talk about my worries and my feelings and it’s good to get suggestions and support from everyone here. As I said I don’t always have someone to talk to about all this.
I love you all and can’t tell how much you all mean to me and how much I appreciate each and every one of you
@Sivonnah We love you both, right back. Here for you 24/7.
Love you too, dear heart!
Yeah, Professor @tracyS!
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