I was just informed by my 21 year old daughter that my shoulder surgery is "ill-advised" (dumb) I always get infections, dislocations and other problems and what will happen if i lose the use of my arm....She said that she is not willing to do a lot to help me especially long term. I know. Selfish brat any one?
My husband is employed by the hospital and they are in the midst of a huge training procedure and he wll not be available at all to help me in ANY way....including driving me to surgery on Tuesday.
What should I do? My shoulder is excruciating. I can tell you what's goign to happen. i will come home and be so abandoned that I will feel forced to try to use my arm long before it's ready.
I want to cry. I honestly do not know what to do. They are making it impossible for me. They have no idea of how much pain I'm in. But they say the surgery will fail and that will be even worse. Why don't they just sell the house and put me into a nursing home. That is where this is going.
Tomorrow is presurgical testing. And another shoulder Xray. he looked at one over 2 years ago and told me THEN that I need a total shoulder done. Now I'm sure the damage is ten times worse than it was. But facts are facts. Fact is I need some serious help and there is no one willing to give it.
The facts are these: you need your surgery, you have coverage for subacute rehab, and you have friends who care about you and are your real family. Get your doc to have you discharged to rehab. Stay as long as they will cover you. Get your friends to rally and make meals for you and you alone when you come home from rehab. Have your doctor write orders for home health to come to provide assistance with your ADLs. You have help. Stop letting your family drag you down. You know you are worth more than that. I believe you are worth much more than that.
Please, stop looking to your family for help. They won’t or can’t give it, and in the end you are the one who ends up hurting and mad. Stop letting them have that power over you.
I am sorry this issue has reared it's ugly head for you again. I know how much this must hurt. I am really sorry.
I learned a long time ago that I can't make people care about me if they really can't. I do not know if your husband and daughter are selfish or not as I do not know them. I have found with people in my life it does me no good to try and label them as selfish. I do not know if they are at fault or if I am. Do I need too much? Are they self centered? I can run these through my head until I am sick and tired but the fact remains: what I need they can not provide. For me it is my mother and sisters, for you it is your daughter and husband.
What is more important is why are you still asking them for what they can not provide? I could never live with nor depend on people who are not willing to support me. I can not imagine how that would mess wit a person's mind and self worth. Why would you do that to yourself? Yes they are not treating you as you should be treated but more importantly why are you treating yourself this way?
These are probably not questions that can be answered by a board such as this. It requires counseling. You need a therapist you trust to find some answers to these questions. You need to know what options are open to you and a plan to get there. If we didn't need therapy before PsA we certainly do need it after. It is a tough road.
With this disease, I learned very early on who I could count on and who wouldn't come through with practical help. I just don't even try with those who won't come through, thinking that this time they magically will. Some people just WON'T, no matter how extreme the situation. I'd suggest stop trying to get those types to do ANYTHING for you, and get others in line who WILL help, without a lot of hassle.
You need to read the previous posts very carefully and take note.
Are you really surprised that your husband and daughter aren’t going to help you? To be honest I’m not, and nor are the other responders by the sounds of it.
Post surgery, your medical team have a duty of care to respond to your needs and to ensure you are discharged safely. As Grumpy says, there are plenty of options, but you have to be firm and discuss your post discharge care honestly with them for your best outcome.
Don’t go home without care in place. I don’t know how things are done in the US but here in the UK in my department patients don’t go home until we can be sure there is care at home or a social care package in place, even if beds are blocked because of the wait for the right rehab or care package.
I suspect you are scared of the surgery and how your incapacitation will highlight your families uncaring attitude. You are still hoping they will step up to help, you need to prepare for the worst and hope for the best.
Good luck with the surgery…look onwards and upwards
What a difficult situation to be in! It sounds like you're frustrated and feeling incredibly let down and alone. Call your doctor and let him/her know that you have no post-surgical support and need his/her help to find some. The office should have all the info you need for post-surgical care. Stock up on freezer meals, soup (and an electric can opener), fruits, yogurt, and other foods that will be easy to prepare and eat when you're out of rehab.
It can be depressing when those closest to us are of no help or support. The thing that helped most was realizing who I could and couldn't count on to be there for me, and accepting the fact that I needed to let go of my anger over those who wouldn't be there for me so that I could move forward and take care of myself.
Are you otherwise able to get around?? If so, you should be fine unless your recovery period has different stipulations then most. I had major shoulder surgery (not psa related) several years back. I was drugged and out for the first couple of day's but then I was okay. I had three weeks where I was unable to move my shoulder (immobilization phase they called it). But I was in a sling thing that pretty much prevented any movement anyways. But I got around just fine and was able to manage pretty good with one arm. I just ate a lot of simple no cook kinda foods. Like balogna, cheese, fruits, jello, stuff like that. And of course I ordered a lot of pizza lol. All in all it was not near as bad as I was expecting.
My first thought was just what Grumpy Cat suggested- short-term rehab. If your husband is being held hostage by the same hospital where you will be having surgery, maybe they could provide someone else- a patient advocate or something- to help you out the day of the surgery. Could you qualify for Meals on Wheels or something for awhile?
Thanks for the encouragement Chris. I've been cooking a lot of food and putting it in individual servings in the freezer...so, for a little while we'll do okay.
Chris said:
Are you otherwise able to get around?? If so, you should be fine unless your recovery period has different stipulations then most. I had major shoulder surgery (not psa related) several years back. I was drugged and out for the first couple of day's but then I was okay. I had three weeks where I was unable to move my shoulder (immobilization phase they called it). But I was in a sling thing that pretty much prevented any movement anyways. But I got around just fine and was able to manage pretty good with one arm. I just ate a lot of simple no cook kinda foods. Like balogna, cheese, fruits, jello, stuff like that. And of course I ordered a lot of pizza lol. All in all it was not near as bad as I was expecting.
I have to agree, your family is obviously not going to help. It's really not worth the effort. You can't re- teach whatever your daughter has learned elsewhere. If you can do any of those things grumpy cat mentioned they are all good ideas.
It is unfortunate that some family are just like that. Not long ago I was struggling with my own pain and trying to help my father. I had no help from any of my siblings despite me calling and telling them that I would likely need help. I don't understand it. I'm so sorry you have to deal with this. PsA is tough enough to begin with.
I have to amend my report from yesterday. My daughter today told me that she was not refusing to help. Merely she wanted me to think long and hard about this surgery if it is the right thing to do. I have a LOOONG history of infection and mental isses and other complications following surgery. She didn't want me to blindly get this surgery done especially because I have a Power of Attorney and a Living Will stating I don't want any efforts to resuscitate or
put me on a ventilator in case of emergency. My daughter is scared of something going wrong and them being not permitted to try to get me back.
So I've spent all day (I had presurgical testing today) thinking this over.. I've decided I AM going a head with the surgery....I have not yet concluded whether or not to amend the living will. .
I had emailed my surgeon about some of my concerns with the surgery and his nurse just called me back and said he wants me to hold off on the surgery and try the biologic instead. That would be fine except that if I have the surgery this year it will be completely free...I'm all paid up for the year. I don't know now what to do.