Dealing with 24 hr. Care of sick AS- losing serenity
gabigail said
Oct 29, 2016
Hi everyone-
As some of you know my AS was diagnosed with cirrhosis and it's been an ongoing battle. My spouse is completely dependent on me. I've had help from others, from dog sitting to meals, etc. My AS needs help with the bathroom, mobility, and attention, as well as financial help. It's draining me. I work full-time and when I come home, I am helping her with everything. So much so that I haven't made my meetings or worked on myself. People ar willing to help with little things, but giving me a break has yet to happen, though I've asked. On top of everything else, I'm so financially strapped that I can't pay all of my bills and hers are piling up. Plus, she's been in and out of the hospital 6 times since June. I'm wiped out.
With everything,I'm dealing big time with anger. Resentment that I should have backed out of this relationship years ago, but now feel stuck and guilty for even going back there. And since I've had no release, I've been acting out in anger. It's made worse since she has refused to go to AA (her excuse: all they talk about is wanting to drink and I have no desire to drink...I can't connect with them). But what she doesn't realize is she needs her program as do I...because I'm having to talk her down off of a wall most days- the martyr role is very strong with her, bringing me even more guilt. Yet, she will say I need to go to my meetings, all the while telling me, I need help with this, that, and the other thing. I don't have the time to take care of her, the dog (whose behavior has only gotten worse with acting out, chewing up stuff in the house, etc.). I have asked her doctors about grief counseling for months now, but feel like they're really not interested in giving this important information or whatever. She needs it. I need it. Yet, I have the same problem- when?! I feel like the progress I had is gone. I need a break. I need a break from her, especially, because there are so many buttons she's been pushing of mine, and no matter how many times I tell her it's bothering me, she either finds some way to blame me and my anger or the disease, or projecting her anger on her situation into me. I'm doing the best that I can, but I truly feel alone. I never imagined how hard this would be. Dealing with her dying is bad enough. Thanks for listening/reading. I've had to get this off of my chest, because I'm about to have a nervous breakdown from all of this.
a4l said
Oct 29, 2016
So sorry to read this. Hospital social workers? Palliative care respite services? I don't know how your country works, those are the terms I'd search with? Sending you prayers, that's so much to deal with. ((((Gabigail)))
MissM said
Oct 29, 2016
I'm sorry Gabigail, it all sounds so horribly stressful. I don't know what I can suggest but I am sending all the positive vibes I can find. It is always darkest before the dawn; usually when I feel like I'm about to completely lose my mind I experience some sort of breakthrough instead of the anticipated breakdown..
Hugs.
lookingup said
Oct 29, 2016
I'm with a41, health care outside the home ,when I was caring for my mom in my home it had become to much for me ,feeling drained in all ways couldn't give my mom the greatest of care she needed,so I had no choice but to turn for help outside my home.
Which ended up being great,not only did it free my time up and saved my sanity,I was able to visit with my mom everyday ,she was much happier and got better actually,I felt guilty at first but had to do something as it wasn't helping neither of us to keep on like we was which was really destroying both of us ,physically,mentally,and spiritually.i have no regrets today over it.......Sending prayers your way gabigail,....hugs lu
Mattie said
Oct 29, 2016
I am so sorry. Would it be possible to set up a site on somewhere like Caringbridge.com, where you can post the needs for something ("Wednesday, need respite care from 2-4 pm" or "Need someone who would take a shopping list and grab some things for us this Friday" or whatever)? It is unquestionable that you need a rest! And maybe there is a social worker connected with her care at the hospital that has resources? Sending you hugs! I know it is incredibly hard and I don't mean my suggestions to imply that it's not.
hotrod said
Oct 29, 2016
HI Gabigail I hear you and do hope that you contact the organizations that have been presented. Home care visits should be a part of her health insurance policies.
As for AA meetings, when my husband was dying from cancer diagnosis and unable to attend meetings, he called AA inter-group and they sent a meeting to our home each week. That was a great help.
Positive thoughts and prayers on the way
Iamhere said
Oct 29, 2016
(((gabigail))) - so very sorry for all the stress and pain you are experiencing. I am quite sure your journey right now is tougher than I can even imagine. I truly have no experience in dealing with one this ill and am sending you tons of prayers and positive thoughts.
My best suggestion, which I am sure you've considered is to just exhaust any/all resources available to you through the city, county, state and/or Federal. My heart goes out to you and any others who are clearly doing more than one person should.
I'm glad you shared here and hoping that gave you a bit of relief - for me, just sharing at times gives me a new level of energy to trudge forward. Huge (((hugs))) for you and yours!
gabigail said
Oct 29, 2016
Wow! Thank you everyone. These suggestions are helpful, because I've had no idea where to really turn. I'm overwhelmed (to put it lightly) and very exhausted. Yes, I deal with guilt if someone else helps in my place. However, I need help, am horrible in asking for specific help, and then deal with more guilt. It's frustrating! I will look into home care, because I may need it sooner than I think. The Caring Bridge page is awesome! I know last week when my AS was in the hospital, I spent so much time on the phone, answering the same questions over and over. I'm trying to figure out how to ask for help on there.
I also didn't know they could bring AA to your home. I think she really could benefit from this. We both need sponsors.
All these suggestions, well wishes, and prayers are what I've needed. Thank you all again.
Fooled said
Oct 29, 2016
I don't know if you are in the US but if so you can try your county board of social services and see if your AS qualifies for Medicaid. That will help with the bills as most states retro pay 90 days. Most palliative care providers have volunteers that can sit with a loved one while you attend a meeting. Hugs to you.
Lucy125 said
Oct 29, 2016
I am so sorry. I have been taking care of my elderly relatives for like 10 years now. My mom is the only one left and she's in assisted living, but I still have to do a lot for her. My brother has terminal cirrhosis and he's in a convalescent home right now. His wife left him 8 years ago. His kids are all screw ups. I guess all the money he has left will go to his care. I can't do it. I am too tired for taking care of all these other people and two kids. My daughter is now at college. I feel guilty. It's all a waste. He was a young healthy man, he had a beautiful family and enough money. He lost all his friends, his family all for his alcohol. His kids are all a mess... all so he could drink.
I wish I had some answers for you. I know Home health helped when my dad was dying and he ended up on hospice care. He was 86 and died of old age. It was bad enough. I pray for you. Insurance covers some home health and hospice. So sorry...
Hi everyone-
As some of you know my AS was diagnosed with cirrhosis and it's been an ongoing battle. My spouse is completely dependent on me. I've had help from others, from dog sitting to meals, etc. My AS needs help with the bathroom, mobility, and attention, as well as financial help. It's draining me. I work full-time and when I come home, I am helping her with everything. So much so that I haven't made my meetings or worked on myself. People ar willing to help with little things, but giving me a break has yet to happen, though I've asked. On top of everything else, I'm so financially strapped that I can't pay all of my bills and hers are piling up. Plus, she's been in and out of the hospital 6 times since June. I'm wiped out.
With everything,I'm dealing big time with anger. Resentment that I should have backed out of this relationship years ago, but now feel stuck and guilty for even going back there. And since I've had no release, I've been acting out in anger. It's made worse since she has refused to go to AA (her excuse: all they talk about is wanting to drink and I have no desire to drink...I can't connect with them). But what she doesn't realize is she needs her program as do I...because I'm having to talk her down off of a wall most days- the martyr role is very strong with her, bringing me even more guilt. Yet, she will say I need to go to my meetings, all the while telling me, I need help with this, that, and the other thing. I don't have the time to take care of her, the dog (whose behavior has only gotten worse with acting out, chewing up stuff in the house, etc.). I have asked her doctors about grief counseling for months now, but feel like they're really not interested in giving this important information or whatever. She needs it. I need it. Yet, I have the same problem- when?! I feel like the progress I had is gone. I need a break. I need a break from her, especially, because there are so many buttons she's been pushing of mine, and no matter how many times I tell her it's bothering me, she either finds some way to blame me and my anger or the disease, or projecting her anger on her situation into me. I'm doing the best that I can, but I truly feel alone. I never imagined how hard this would be. Dealing with her dying is bad enough. Thanks for listening/reading. I've had to get this off of my chest, because I'm about to have a nervous breakdown from all of this.
Hugs.
Which ended up being great,not only did it free my time up and saved my sanity,I was able to visit with my mom everyday ,she was much happier and got better actually,I felt guilty at first but had to do something as it wasn't helping neither of us to keep on like we was which was really destroying both of us ,physically,mentally,and spiritually.i have no regrets today over it.......Sending prayers your way gabigail,....hugs lu
I am so sorry. Would it be possible to set up a site on somewhere like Caringbridge.com, where you can post the needs for something ("Wednesday, need respite care from 2-4 pm" or "Need someone who would take a shopping list and grab some things for us this Friday" or whatever)? It is unquestionable that you need a rest! And maybe there is a social worker connected with her care at the hospital that has resources? Sending you hugs! I know it is incredibly hard and I don't mean my suggestions to imply that it's not.
HI Gabigail I hear you and do hope that you contact the organizations that have been presented. Home care visits should be a part of her health insurance policies.
As for AA meetings, when my husband was dying from cancer diagnosis and unable to attend meetings, he called AA inter-group and they sent a meeting to our home each week. That was a great help.
Positive thoughts and prayers on the way
My best suggestion, which I am sure you've considered is to just exhaust any/all resources available to you through the city, county, state and/or Federal. My heart goes out to you and any others who are clearly doing more than one person should.
I'm glad you shared here and hoping that gave you a bit of relief - for me, just sharing at times gives me a new level of energy to trudge forward. Huge (((hugs))) for you and yours!
I also didn't know they could bring AA to your home. I think she really could benefit from this. We both need sponsors.
All these suggestions, well wishes, and prayers are what I've needed. Thank you all again.
I am so sorry. I have been taking care of my elderly relatives for like 10 years now. My mom is the only one left and she's in assisted living, but I still have to do a lot for her. My brother has terminal cirrhosis and he's in a convalescent home right now. His wife left him 8 years ago. His kids are all screw ups. I guess all the money he has left will go to his care. I can't do it. I am too tired for taking care of all these other people and two kids. My daughter is now at college. I feel guilty. It's all a waste. He was a young healthy man, he had a beautiful family and enough money. He lost all his friends, his family all for his alcohol. His kids are all a mess... all so he could drink.
I wish I had some answers for you. I know Home health helped when my dad was dying and he ended up on hospice care. He was 86 and died of old age. It was bad enough. I pray for you. Insurance covers some home health and hospice. So sorry...