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When family becomes bitter that I’m not who I was
hi. I’ve been aware that my many conditions has been progressing and becoming more clear to me I am not the same person I used to be. I’m doing well with the process; but my husband, well frankly he can be very cruel & mean towards me. He has things he’s dealing with in his own life. Ex: questioning where his life went to. How kids and I makes him so unhappy. He makes comments that really hurts me like this morning, (he said something he needs me to do like know what I want to say before talking to nurse so I don’t sound like I’m stumbling over my words. I explained that’s why I need my CNA to handle what I can’t anymore. He mumbles angrily “you just don’t want to do it” – I know caring for an ill person is not easy. What is hard is being blamed for what is out of my control. I’m not going to minimize what he deals with, but what he won’t try to understand is what I’m going thru. It is ME, not him, who is in severe pain and can’t care for myself anymore. I share that his remarks are hurtful and he just says “yep” …. mom passed away and I don’t have her to turn too. She was terminally ill for years. Now I’m terminally ill but different conditions. We knew we only had each other to really talk to about what we were going thru —— no one else really got it. And I married a guy is like my dad. No empathy and life evolves around him. I don’t want life evolve around me either, but he needs to stop blaming me. There is a huge wall up between us. He has no intentions of changing that. He ailiants me. How has others dealt with this sort of thing?
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9 Replies
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Hi Ruthie,
Wow, that sounds like a really difficult situation and I’m really sorry your husband isn’t handling things well/is taking out his negative feelings on you. Have you thought about seeing a counsellor, either together or on your own?
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Just a few more minutes until spouse gets here. How I hate dreading his coming. He is very busy blaming me for his life not turning out the way he thought it would. I miss the closeness we once shared. This past birthday, (11/29/1965 – my 54rd) was my 1st card from him that didn’t say how much he loves me and how he doesn’t tell me that enough. It simply state, “Happy birthday, Kenny” – I miss my one CNA, Bill. He was a pastor too. Very hard worker,managed my business things well, never forgot to give me my meds. Prayed before work and after work with me. He works full time these days but he will visit me and text me. Kenny liked him. My hom health agency hasn’t sent me a CNA for bout 4 months. So when no one is sent, Kenny picks up more hours. I qualify for full coverage of care as well as 24/7/365. Certainly would be great if I actually got coverage. I no longer can be left alone. I have already fell few times, and started a stove fire. (Thankfully my 17yr old was home to put fire out). I just stood there watching fire get bigger. A formal complaint was done and sent to State about Agency not providing me with care. I’m worried Trump will take action that will result in my no longer getting the full coverage; or other assistance. God tells us all to love one another; that He created all people. I understand the ‘wall’ – but at what cost to our Countr?
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Hi Ruthie
I am so sorry you feel so sad and anxious. it sounds as though the system may be failing you. Didn’t you say you had an advocate? Perhaps that person can intervene on your behalf to get you a CNA.
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yes I do have an advocate; Brit. She is a friendly yet a go-get-er! She have actively looking and making calls for me. Unfortunately I live in what some would say a nice & quiet area. Agencies are about an hour away. Hard to find someone willing to make that drive. She has also been reporting my client manager for failure to comply with contract with not sending me anyone.
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Hi Ruthie, that’s so tough! The system is definitely not holding up its end of the bargain. I’m glad you have Britt, and your pastor, and hopefully you’re finding some support online too. You mentioned you’re in a quiet and somewhat remote area… I grew up in a rural area and I can relate to not having easily accessible services closeby. Now that I’m in the city things are a bit easier. Have you considered moving to another location or is that not possible right now?
I’m also really sorry to hear the pain and sadness about your spouse. I recently ended a relationship that sounds very similar to yours and my heart hurts remembering the pain and sadness it caused me. *big hug* I wish I could offer something more concrete but I’m praying for you and your family.
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I found comfort from reading your post. And I’m sorry to hear there are 2 too many men that can’t put themselves to the side to supports, encourage, love – what I don’t get,is Kenny will complain he didn’t get love growing up; knowing how that feels, then why inflict hurtful remarks?
Im sorry that I’m not coming across up beat. I’ve ALWAYS been an encourager to others. Moving is not possible. However, Kenny has already been looking around for a new 2- bedroom place for after I’ve passed away. I was fed up with him that I told him ‘You have no one else to blame that because of him telling our daughter what to do (call 911) that I’m still alive (suffering needlessly). I have a PA POLST Order (highest legal end stage document) that clearly stated DO NOT SUSTAIN MY LIFE, no horrific actions, never remove me from my home to go to hospital! It’s filled out by my doctor from what my wishes are. Basically means any and all Drs MUST follow this Order). It’s been ignored by police, EMTs, hospitals, Pallative home nurse on several occasions in 2018 alone. Unlike a Living Will, a POLST Order cannot he changed by spouse or professionals and family. A living will states my wishes but a spouse or children can change my wishes for what they want. I saw it happen to my mom days before her passing in a hospital rather than at home where she wanted to pass away at. It was very selfish of my dad for not honoring moms wishes. Living as a terminally ill person, life is all about what patient wants for themselves. After death, do whatever you want.
im off my med schedule without a CNA to remind me and bring them to me, and having a new dr after my dr of almost a decade moved out of area, I’m left with subbelow quality of care with new dr. He’s not filling my scripts properly (CVS pharmacists sent new dr all meds with details) so no excuse to change them. He took me off my morphine dropped me down to tramodal. What a joke. This “opioid epidemic “ is only going to get worse for death counts. And on news if listened to the deaths by opioids is not opioids as taken exactly by Drs instructions, it’s from adding meth or cocaine or fentanal and more than Drs instructions. I already went up the ladder of all pain meds. I’m terribly sorry for having a down few weeks. I don’t want to bring myself or others down. I’m tired of not sleeping well, attitudes of some, not having my dr and now with new dr having to justify my many many health conditions after been tested and treated and DX already. I’m going to stop now, I’m too negative right now. Thanks for encouragement.
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Ruthie, you are here for a purpose and you are an inspiration to many. Keep up the fight.
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has anyone else feel like the obstacles we face daily as our PD progresses just isn’t worth the fight anymore?
Im mindfully aware that my thoughts are controlling my emotions as they’re being held captive in my minds negativity committee in my brain. I have successfully learning and implementing DBT Skills them in my daily life. I’ve always been the encourager. Even though I have the skills to control my thoughts, I’m still finding myself feeling “I’m just done fighting” —-
has others felt this way before? I’m very isolated here and surrounded by family whose so angry in every aspect of they’re lives that I’m often the scape goat. All of my conditions is taking a toll on me physically and emotionally.
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thanks, I will do my best. I am running low on sleep, support and continued progression on many of my DX is wearing on me. Starting all over with a new pcp really sets me back also.
i don’t want to bring anyone down. If anyone feels I am doing that by any of my posts, let me know so I can stop posting.
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