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I'm slowly losing everything....vent
I've posted here a few times about my dad...see here http://community.thenest.com/cs/ks/forums/thread/55395348.aspx for the more recent post.
I've continously hit dead ends, one after another, in regards to my dads care. I'm on the verge of a complete emotional breakdown and its getting worse everyday. I've been talking w/ my dads social worker. She hasn't been able to successfully find any resources available to help me or my dad. Yes, the complicating factor is that he refuses assisted living. He won't budge on that, tried discussing it and that was shot down VERY quickly. And honestly, his condition has deteriorated to the point that I can't leave the house at all unless he is asleep. He can't even get up to go use the bathroom on his own right now. So really, he needs to be in a nursing home. But even if he accepted that level of care (highly doubtful) he would need hospitalized longer than 3 consecutive days before being placed. Sigh
The social worker did get my dads case assigned to the head oncologist which is hopeful. We have an appointment next week to review biopsy results from a procedure on Tuesday. But of course until then he won't provide any assitance since he hasn't seen him. Both his physical therapy and shower assist have both expired last week and won't be renewed until later. I ask the social worker to ask him to atleast renew the shower assist as it personal hygine issue and that is not acceptable for me. Still awaiting a call.
Other than hiring private nursing my dad does not qualify for any type of assistance other than basic housekeeping for an hour or so a couple days a week. And he currently requires 24hr care for the most part. From what the social worker explained to me Hospice will only come out based on a life expectancy of 6 months or less. I thought they did things differently though and swear I heard from them that they were available for anything as long as the doctor approved it. Which, by the way, his last oncolgist denied. Awesome.
Family and friends have all but dissappeared. My dads sister ( I refuse to refer to her as my aunt any longer) won't help unless it is convenient for her. I need a break. I need to go back home to refresh myself and reconnect w/ my BF as this has taken a very large toll on our relationship. I reached out to both my dads sister and the close family friends. That was a waste of time and just upset me more. Dad's sister is too busy w/ work and triathalons to come stay w/ my dad for 10 days. When I lay out the facts that I've been doing all of his caregiving for 2 months, have no income, barely holding on to my job back home and don't qualify for (FMLA as she does) she goes into beotch mode and tells me she will not allow me to guilt trip her and its now my responsibility as his daughter. Grrrr. Asked the close friends if they could do as they originally volunteered and was the very reason he moved into their apt. complex (come to the house each morning, get dad up, make breakfast,hang for a bit, come back and bring dinner) so I could take a little break (which they are urging me to do) they responded w/ excuses. I wasn't asking that they stay here w/ him while I'm gone, just that they help w/ by fullfilling the original offer to greatly reduce the expense of a private nurse. Again, sigh.
I've just been informed by my employer than unless I give them $900 my health insurance will be cancelled at the end of this month. My dads reaction to that was not so good so having him pay that to extend my insurance until the end of Aug is out. I, of course, have medical issues that need addressed that I now can't persue. All of the VA's programs designed for assistance and care giving are out of reach since my dad doesn't qualify. This was especially difficult news b/c that program also offers health insurance to full time caregivers 
I'm sick of all the dead ends, the lack of help and lack of emotional understanding of loved ones. I'm still hammered by questions from multiple people daily even though I explained that I will give updates as needed as my dads condition changes for the better or worse for that matter. They have ingorned all that and get snarky w/ me when I tell them how frustrated I get by this. Especially since when I answer the questions they ask I get the same exact question 5 mins later since they weren't paying attention. When I attempt to explain how I'm feeling about all the circumstances (both my dad and myself) I'm told that I shouldn't feel that way and I need to remember what everyone else is going through. Really?! I am apparetly not allowed to have emotions is all of this.
If you made it this far....congrats. Drinks on me. And I could sure use one right now myself. So cheers to that! There really isn't much of a point to this post, just needed somewhere to put some of my feelings and frustrations out there w/out (hopefully) be made to feel even worse. If there is any additional advice, I'm all ears...well eyes really. For now I'll be keeping my fingers crossed that this new doc validates my concerns and approves hospice care.
Re: I'm slowly losing everything....vent
Maybe he won't go because of all the bad press that some of the facilities have gotten.
Would he budge if he had a chance to tour the facilities and pick one that he likes? Suppose you ask him to do that: tour the facilities and choose one he likes. see what happens; it cannot hurt.
I think you need to tell your dad he's going to assisted living and that's the end of it. It should not even be offered as an option, but as this is what you are doing. You need to be able to support yourself and deserve pay and health insurance.
I'm very sorry you are dealing with this all alone, I cant even imagine. But you have done as much as you can and you cant lose everything you've worked for in your life when you've sacrificed so much for your dad, yet he's not willing to make sacrifices.
First off, I'm so sorry you're going through all this. It sounds like a total nightmare and wow... you're amazing to have stuck it through this long, I think.
I have to say (and this will come across as rude; I don't mean it to), does your father know what sacrifices you've made for him? Does he know that you're risking your relationship, your life, your health for him? Does he understand that? Because it seems to me that a loving father would want the best for his child, would want to see his child be happy and healthy and stable, and not paying the price for HIS life with THEIRs. It seems really selfish of him to be so adamant at not accepting assisted living, and to assume that you'll be there for him, always.
I don't really have any real advice to give you here. I wish I did, honestly, and I'm sorry that you're going through all this. Try to take care of yourself, as much as you can, okay?
Get up, get in the car, and drive home. Go to work at your job, and pay your bills.
And when your father calls, or his nurse, or his sister, or social worker calls, say "I can't help, I was going bankrupt, I had to go back to work". I promise you, without you being there, your father will go into assisted living.
You cannot seriously intend to lose your job, your boyfriend, your health care, and your home and family life over your father refusing to move to assisted living. You do not owe him this. Stop it.
This is very, very tough, and I'm sorry you're bearing the weight of it all on your shoulders.
I ditto the others who have said it's time for your dad to go into a nursing or assisted living facility, and that it is no longer his choice. I know it must be hard to feel like you are forcing him into something he doesn't want to do. I think the way you have to explain it to your dad is that it's not in HIS best interest to be cared for by you, solo, at home any longer. He needs more care than you can give. You are worried that your lack of expertise will cause a situation where he sustains further injury or harm because you have neither the knowledge or facilities necessary to help him. You want the best for him, and you're no longer able to provide that.
I'm giving the whole thing with the BF a huge side-eye. I would hope that a guy I considered to be "building a life and home with" would be my rock through this type of thing (even if his kids prevented him from being physically there with/for me) for at least several months! If his reaction was "I have to lay low for a while because this is too confusing for the kids" I can ALMOST understand that, but if he's just saying "hey, I'm no longer your priority so I'm gone," then it might be a good thing in the long run.
Thanks for the advice everyone. I do know that he needs assisted living, everyone knows that. But he has it preferenced in his living will - "I do not wish to be placed in an assisted living facility choosing at home health care such as Hospice". I can't change that and he won't sign a new living will. I wish there was a way around it. If I pack my things and fly home he will then become a ward of the state. How can I just leave knowing that?
While I've kept him updated on the things going on with me he's not really getting it. He has a lot of difficulty focusing. Mentally, he's just not the same person. A few months ago he would've understood but in his current state its just not clicking.
I'm sorry for everything that has been going on with your dad and you. I don't have much to offer, but thought I would address the "information chain". I recently had a friend who was diagnosed with cancer. Her friends made a blog on the caring bridge site (www.caringbridge.org) to update everyone on how things were going. Sometimes she writes, sometimes her daughter or friends write about the chemotherapy, radioation, etc. It may be helpful to set up one for your dad and post those things up there instead of doling out the same information each time. It will also be helpful if/when he has to be hospitalized again.
In addition to the other advice you've been given I want to address the text above. I'd be at the point now that the only people I'd be talking to would be the social worker and any other assistants helping you and your father. If everyone else in your life can't be bothered to lend a hand during all this, do not let them stress you further with ridiculous phone calls, comments and questions. Send a weekly update by email or something simple like that. Take care of yourself.
To the bolded sentence above: This is all well and good, however unless he has the funds to pay for "at home health care", this directive is null. His wishes are just that... wishes. I wish I could be independently wealthy and not have to work. However, that is not my reality. And unfortunately for him "at home health care" is not in his reality either.
You also mentioned something about him becoming a ward of the state if you left. I'm not sure that is such a bad thing. Would he then qualify for some of the care he isn't currently getting? Currently he isn't getting state assistance because you are there... the state isn't going to pay for a health care worker if you are there doing the job for free.
Either way, I wish you the best. You NEED to get out of there for your own sanity or you will be occupying the bed next to him at the hospital.
I live in British Columbia, Canada so I'm not sure I can help but I think it is worth a try, so here goes.
I think your dad is mentally incapable of making his own decisions, and from the above it looks like you agree with me. Is there any law that if you think an elder is mentally incapable of caring for himself that you can become living executor of his estate (I believe that is what it is called here) this is basically like a living will but it puts you in charge of him. This would give you the power to put him in whatever care you see fit and in your case is a nursing home. This may cost quite a bit but at least this way you could go back to work and have an income and you would keep your medical. This will allow you to take care of your self properly.
Having said that if there is nothing like this where you live, I would move back home and go back to work. You need to think about your self first. I understand he is your father and you want to help him. But I think his sister is doing the right thing and trying to stay away. She may want to help out more if your dad was in a nursing home and it would not be as stress full on her.
You bf is only looking out for you. He may be putting his foot down because he thinks you should back off and go back to your life and this is his way of helping you. Your bf is a great man if he has stood by your side this long.
Good luck with whatever you decide to do. If you need to vent in the future we will be here for you!
Honestly, I would say this too. I would never sacrifice my job so that I could take care of my ailing father. I couldn't do it. Assisted living would be his only choice. Terrible choice to make, but that is also of his own doing.
FWIW, my family had to finally put my grandmother in a nursing home. She has alzheimers and it was killing my grandfather to try to take care of her. After he had a mini stroke, my mom and her siblings knew it was time. They found a great nursing home that took medicaid. This place is beautiful, has good food, planned actvities, gardens, chapel services, a huge family festival in the summer, a beauty shop and most of all has trained professionals who know how to care for her and her disease. My grandfather at first felt guilty, but he has come to accept that this is best for everyone involved. He couldn't take care of her, my mom couldn't, my uncle couldn't and my aunt couldn't either.
There really are good nursing homes out there and not like the ones of many years ago. My family goes and visits here a lot and this situation truly is the best for everyone. I don't know much about assisted living but I think they are even better than nursing homes.
He can't ask this of you. HE can not give up your livelihood as well as your physical and mental health for him. That is unfair of him to ask and not this does not make you a bad person or a bad daughter. I know my mom certainly doesn't feel guilty that her mom is in a nursing home and not at my mom's house. My grandmother is actually doing better at the nursing home than she was at her own home. My mom said she is much sweeter, nicer and more relaxed. At her own home she was mean spirited and easily frustrated. Remember, the man you know now isn't who your father truly is. Have some peace knowing that the man who was your father wouldn't ask this of you.
Just chiming in with a thought...I've worked in healthcare and worked with many families with all these issues. I'd consider asking the social worker to help you get someone to declare him not fully competent and if that works or doesn't... what about moving him to where you live so that you can have a life too. Move him to where you live and into an assisted living or a nursing home, because I doubt he'd want you to lose everything you've worked for. Talk to him about it if you can.
I'm so sorry for everything you are going through. You are an amazing person for trying to do this for him. Being a caregiver is tough, but the sole person is even tougher. It is a physical and mental strain to say the least. You have to do what you have to do. If it is moving home and then moving him to you....or getting him admitted to the hospital and go from there (which may be the easiest).
Keep venting to us. Hugs!
You have given your father 100%. You can walk away at this point without any guilt. I would hope if your father was in his right mind, he would agree with you walking away as well.
I have no doubt it would be hard to do so - but you've done everything you could. Be at peace with that.
So he's a ward of the state. I know of lots of people who are wards of the state, and they get the care they need.
He does not care if you lose your job, your insurance, your home, your boyfriend, your life you've worked so hard to build. And he may not care because he's too ill to care, or he may not care because he's an ***, or some combination thereof, but this is ridiculous. Stay, or don't stay; but this is YOU doing this to you, no one else.
Your father is really not willing to give you $900 to keep your health insurance for a month while you have health issues and while you are giving up everything to care for him?
Really?
Really!
You have completely lost your mind. Which is understadable considering the strain you are under has reached the breaking point. But I beg you to leave and manage your father's care as a ward of the state. No one is going to do anything bad because you'll blow the whistle and get action. It is the only way to get him the care he needs. It is the kindest thing you can do. Hard as hell, but the very best thing.
Your current situation is unsustainable. Stop acting like it is. GET OUT so help can get in. As long as you are there spiraling down nothing will change.
You know this is going to happen eventually. The only question is whether it's going to happen before or after you completely destroy your life beyond repair.
It's okay to get out now while you still have your sanity and an ability to mange your father with services. What you're doing now is not sustainable at all. Stop feeling guitly about it.
I am sorry that you are dealing with this.
It sounds like your father is in complete denial about the severity of his condition. This happens to a lot people when they get an end of life illness. And they are trying to hold on to control so bad.... that they become VERY self centered and seem like they care for no one but themselves.
I am unsure of your state. But Hospice can come in 3 times a week for certain things.... Are you signed up for hospice?
My dad fought me tooth and nail on everything while he was in his final months. I finally had to sit down with him and say.... Dad, I love you. But I cannot do this by myself. You need to let me get help.... and by help I mean going into a nursing home until you are able to care for yourself again.... make it sound temporary..... and it could very well be.
Your social worker should be able to guide you through the process of what to do next. You might need to get guardianship legally to proceed.
From your post it sounds like you are in the limbo land of not quite on hospice but too sick for him to be without 24 hour care.
And just to give you an idea.... 24 hour at home care is going to run around 2000 to 3000 a week. So unless dad is a multi millionaire that is just not possible.
Sara, Friend?
glove slap. I don't take crap.
My mother-in-law went through this with my father-in-law. Her doctor finally told her, "He's going into a nursing home -- either while you're alive or after this has killed you. Either way, it will be soon."
Ask yourself, do you want him to go into a nursing home now, while you can still salvage something of your life, or soon, after you've been hospitalized with a complete physical and emotional breakdown. And have no insurance to pay for it.
You have done your best, but this burden cannot be carried alone. And do not let anyone make you feel guilty. Get out now, before they have to carry you out.
My mother-in-law went through this with my father-in-law. Her doctor finally told her, "He's going into a nursing home -- either while you're alive or after this has killed you. Either way, it will be soon."
Ask yourself, do you want him to go into a nursing home now, while you can still salvage something of your life, or soon, after you've been hospitalized with a complete physical and emotional breakdown. And have no insurance to pay for it.
You have done your best, but this burden cannot be carried alone. And do not let anyone make you feel guilty later. Some things just aren't possible, and you caring for your father alone in this situation is one of them. Get out before they carry you out.
You are all 100% completely right. I've got to go. I want to and I have to. Wanting to of course meaning I want what is in my best interest. And leaving is just that. As hard as it is not really knowing or understanding fully what will happen to him I've got to get over it and really allow myself to not feel guilty about it. This is just such an emotional roller coaster. It sucks, ya know? Ugh.
My dad is most definitely not in his right mind. And the only reason is because he is just too ill to understand it. 4 months ago the insurance thing wouldn't have been a problem. Hell, part of the reason my dad is so sick is b/c he was caring for his dying parents and not addressing his own medical issues. But he's not that person right now. The dad I've had my entire life has been my biggest fan and only wanted what was best for me. That dad was the only person to encourage me to move away from here and have a happy life. That dad would never want me in the position I'm in today. He would tell me to get out of here and get on w/ my life, be happy and successful. I've got to almost consider him a different person right now to allow myself to make the decisions I need to make for me.
I've been talking to a couple people here this evening. And I think they finally understand where I'm at w/ all this. Both my mom ( after a rather large wake up call from my sister) and a close family friend agree I need to go back home. I'm my dad's primary health care agent, his sister is the alternate if I can or won't act on my dads behalf. And I can no longer do this w/ out compromising everything I've worked so hard for and that my dad supported me through.
Thank you for all the advice, kind and encouraging words. I sincerely appriciate it. And I can use all the support I can get. If anyone has anything else to offer, by all means do so. This is a tough decision, but its the right one in the end.
You've gotten some really great advice above. This one is an excellent one to remember when you start to feel guilty.
Do you have someone you can call, a friend or relative, that isn't in the middle of this, that could give you some support or just listen to you talk for a bit? A public message board is great, but having the support of someone that knows you and loves you is much more helpful.
I live in Florida and work in the mental health system there. If your father truly does not understand the impact he is having on your life I would question his competency. The focusing etc could be med related or it could be a symptom of a 1000 other things.
Call the 1-800 number for DCF, 1-800- 962-2873
Tell them you have a senior in need of services and you are from out of state, they can guide you
Call the dept of elder affairs 1-850-414-2000
Thye will advise you of any programs your dad qualifies for and at the least send out a caseworker. I know this for a fact because this is what my bff does.
Hospice is always for the last 6 months of life, but if your dad has straight medicare then there is always a homecare option so it makes no sense to em he is not recieving at least basic services. I think your dad needs a complete pyschiatric assessment as well as medical stuff and that can be ordered by his physician.
I live in Florida and work in the mental health system there. If your father truly does not understand the impact he is having on your life I would question his competency. The focusing etc could be med related or it could be a symptom of a 1000 other things.
Call the 1-800 number for DCF, 1-800- 962-2873
Tell them you have a senior in need of services and you are from out of state, they can guide you
Call the dept of elder affairs 1-850-414-2000
Thye will advise you of any programs your dad qualifies for and at the least send out a caseworker. I know this for a fact because this is what my bff does.
Hospice is always for the last 6 months of life, but if your dad has straight medicare then there is always a homecare option so it makes no sense to em he is not recieving at least basic services. I think your dad needs a complete pyschiatric assessment as well as medical stuff and that can be ordered by his physician.
I'm so sorry you're dealing with this.
But I have to agree with the posters who have said GET OUT. I love my father, but I could/would never give up my entire life to care for him. If I did, I wouldn't be the person he'd raised me to be. If he asked me to, he wouldn't be the father I love and respect so much...I would know something had changed and would question his competency.
I wouldn't want my father to be a ward of the state either. If he qualifies for no other aid, however, what else can you do? Eventually you will lose everything and then not only will you be unable to continue caring for him, you won't be able to care for yourself either. How does that help your father? He'll end up a ward of the state anyway, your life will be destroyed, and all you'll have gained for that is a few extra months out of assisted living and a lifetime (for you) of regret and resentment.
I went back this morning and re-read everything thing again on this post. I must thank you all again. It sounds crazy, but a bunch of people that haven't met me can make me feel better about this situation. In answer to this:
I have maybe 2 people I can talk to outside of the current situation, one being my sister (step) and the other a good friend. Both have been supportive through this. But for those 2 people, I have 5 that make things even more difficult. After yesterday's wake up call I'm just not addressing things and I'm not going to let their selfish, negative comments effect me.
Thank you for the numbers. I will be calling them today. This may be my last option. I did speak with Hospice last night and at the moment it will not be of much help. While they can be here for 8hrs a day for basic services they would need let in the house and back out at the end of the day. And my dad won't/can't ( I'm not sure which at this point) get out of bed to answer the door. He is also not eligable for Medicaid as he is only 64. His mental health was addressed last month and they found him competent stating his lack of concentration was due to anemia. But there is nothing wrong with having another assessment done.
This bolded statement is exactly why I am I leaving. As much as others want to argue with me and guilt me into staying I know it would be the wrong thing for both my dad and I. Right now my priority is my dad, not everyone else. I know what he would want for ME. And just because I am going back across the country doesn't mean he is any less of a priority to me. I'm sure I will be told otherwise and I'm trying to keep prepping myself for that b/c these converstations are going to be very emotionally difficult for me.
.....Next week is going to be a big week for me. My dad will get his biopsy results which could change everything and/or not give any new or additional information about his condition. His sister will be here for that appointment and has agreed to discuss options with me. In my wildest dreams I could never imagine that this will go well. She has made it very clear that she feels it is my duty as a daughter. She has also stated that she is going to start digging through his bank account when she gets here which makes my stomach turn. I don't trust her at all. She has not appropriately handled my grandparents estate ethically or legally. I'm still going to take over POA since I can still be reachable via phone, fax and email. I'm just afraid that she is going to completely drain my dad and depleat funds that would otherwise make it possible. This is another reason this decision is so difficult me for me.
Thanks again everyone. I truely can't say that enough
We were in a somewhat similar situation with my Mom, where did not want to go to a live in facility and hospice was a total joke. Luckily we had enough people and financial resources that we could take care of her at home. It is hard and stressful to be a 24/7 care provider for a parent. You're dealing with the helplessness of watching a parent, who is supposed to protect you, deteriorate, while being emotionally and physically exhausted from having to take care of their needs all the time.
Personally, I would contact Department of Social Services and see if there is any way they can match you with legal assistance. And see if you can get him committed to assisted living against his will. It's best for him, as it is literally impossible for one person to meet his needs every day, and it's better for you. It will allow you to keep your life together and go back to the role of supportive and doting daughter. You can still help but it won't all be on you.
I'd also suggest counseling. You have a lot of mixed up feelings, which is totally natural, but if you don't find someone to help you work through them I think they will destroy you. I know the guilt I feel in retrospect for not doing x, y, and z for my Mom can be overwhelming sometimes and I was in a much easier situation than you.
Sending lots of good wishes to you to get through this and get back on track.