Fed up with the medical support telling me how I should feel or act as a caregiver.
I have been the caregiver for my father-in-law for over two years. He is end stage stage copd and currently receives Hospice care at home.
To say he is a controlling man is an understatement. He is, at best,a difficult man and very stubborn about his medications or listening to the doctors/nurses/social workers.
I know everyone expierences dying differently. That's all I keep hearing. That it is his decission about end of life care. He has the final say so, etc., In my brain, I know this. I am a very logical person, so it is diifficult for me to even try to understand an irrational behavior, but I try my best.
It seems as if I keep getting mixed messages from his care team and to be honest, I am fed up! Don't get me wrong, for the most part they are angels and great people. But, I ask you, if every person expieneces dying differently, wouldn't that also apply to caregivers? That our type of caring style would be different from each other?
I was very honest with my father-in-law in the begiining of my choice to be caregiver. I told him that I am not a very affectionate person, but that I am caring. I told him that I am tough ( being raised by a srict military father ), so that I would push him to do the things that I felt he could do for himself. I told him that I am not one to do a lot of small talk and I also told him, that there would be some things pertaining to his care that I could not do, such as bathing, changing diapers, etc., On the other hand, I cook very good meals, do his laundry, run errands, take care of all medications, clean the house and take care of his fianances. I might also add, that last April he was given four months and that was almost a year ago.
So how do I cope? I vent. I listen to music. I write. I work in my garden. I pray.
My father-in-law, comes home from respite care today. Two days ago, he was already giving me orders over the phone. The Hospice nurse told me he was disrespectful and bossy, not to mention argumentative. I told her that was something I expierence everyday with him. I was happy that she went through that, so maybe now, they will get it.........that I am doing the best that I can in a difficult situation.
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Now a word about Hospice. There are for profit and not for profit hospices. Of course those that are for profit may take the opportunity to pad there bills just as many hospitals do. Those who accept Medicare and Medicaid are very closely supervised by the state, at least they are in New York State. A two person team whould arrive unannounced and stay for a whole week, pouring through the patient's records and accompanying the nurses on home visits watching their every move.
Like everywhere else the quality of the nurses employed by the hospice varies.
Those who have never worked for a hospice think that the nurses do it because they are too poorly trained to do anything else. This could not be further from the truth. A competant hospice RN need to have years of experience to do a good job. He or she needs to be able to deal with any emergency and diagnose difficult conditions so that she or he can report to the Dr and ask for appropriate medication. 911 is not usually an option. The patient usually has a DNR and refuses to go to the ER. It is rare for a Dr to make a home visit. So if you see an older RN visit from Hospice she is not a "has been" she has a wealth of experience and training to share,where as one with a bright shiny BSN may never have met some of the conditions she is required to deal with. Just as there is caregiver burnout the is also a high level of nurse burnout working with hospice patients. The nurses find a great deal of joy in careing for their patients and their famillies but it comes at the price of personal stress. Nurses do get emotionally attached to their patients. Six years after retiring I still get hugs from family members I meet in the street. I also love to see former colleges but still can't bring myself to visit the office. I do not even drive past as I have the vision of a big hand pulling me in.
Don't get me wrong, I loved my work, my patients, the famillies and the challenges but in the middle of the night I would often stop outside the door and say a little prayer because I had no idea what I would find on the other side.
I came late to hospice work at the age of 58 and worked for ten years as the on call nurse. On call was 126 hours a week for three out of four weeks which included day and night at weekends.
Dina you are doing a wonderful job. no one has the right to tell you how to behave or feel so speak up and don't accept it. Yes you may need guidance in the care you provide, no one knows everything. Take care of yourself now and more importantly after your FIL passes.
To Lori I am so sorry you had to go through this horror, it is something no one should have to experience. I have had to fend off the EMTs when a familly member who didn't know any better called 911, they eventually learnt not to mess with this old lady. I eventually had to carry a paper that said I had the final authority. Blessings Dina and everyone else
"Bossy" and "argumentitve"! Pfffft!
Sounds to me that you are doing a wonderful job for your FIL. JeannieGibbs and Dirk hit the nail on the head and I echo their comments.
At least you got some respite care for your FIL. There is nothing better than a break to clear the air and renew your spirit to be able to jump back in the frying pan when he returns to your care.
I'll tell you a little story that kinda addresses this situation. When I was in the final stage of labor with my first child and the baby was descending, I got a little loud and my husband spoke to me rather harshly to get my attention. The Doctor said something to him about the way he was talking to me. My husband replied to the Doctor "You take care of your end and I'll take care of mine". I calmed down and my 8 lb 15 oz baby girl was born a couple minutes later.
So, Dina, just a little line that may help you through the day. God bless you. I said a prayer for you.
Sue
I think it is extra frustrating, if that is even possible, when someone TRIED to have all the papers in the right way and still ends up with unwanted CPR and probate.
My heart and prayers are with you, even with the best pre-planning the paperwork does not dry up and go away for quite a while. First you have the notifications of social security, friends and family, then the funeral thank yous, then the death certificate mailing-out....It has been nearly two years for my mom and we still get notices from dad's workplace even though I personally notified several different divisions of my mom's passing, and a company or two persistingly mailing her ads for things she never needed and solicitations for things she may or may not have ever wanted to give to, half of which are scams anyways. For one thing having to do with a (zero balance) credit account, I did end up having to call and notify someone probably over a year after she passed, and the only sweet thing about that was they first offered condolences (most places do that as a matter of course when the death is recent) and you know, I still needed them. I guess there is not a firm "end" to it all, but an evolution of a gradual recovery and feeling like you can come back to life again...after 13 years, if it takes a long time and some help from a real-life support group or even a counselor, you should absolutely get that when you feel even half way ready. There is a lot of support on here and it helped and still helps me a lot to share experiences and give and receive it and that is "real-life" too, but you probably know what I mean.
---And I am also now going through all of her things and trying to get her place cleaned out, also pretty much alone, except for the people I'm giving things to, and of course they are johnny on the spot to pick up their loot but do not stay to help me with the rest of it. I'm mad too, Blackcat. Really, really, really mad. About all of this, starting with the 13 years of 24/7 care and ending with this horror show and it STILL won't end until I get all of her belongings organized and the estate probated. Those who have never been in this trap have no right to give any kind of advice to those of us who are in the trenches.
It's hard enough to take care of mothers and husbands. The whole extended family thing is asking way too much of you.
Bullshit. A few weeks? ago, this exact website had an article from somewhere, maybe the NY Times -- and it was some of the most memorable reading I had come upon regarding this whole caretaker situation. In a nutshell, it said "blessed be the reluctant caretaker, because they have given up their life to take care of another and they never asked for it, and they don't particularly want to be this role".
That was me. My situation was very very similar to yours. And I had to fire a handful of healthcare workers and a hospice along the way -- they don't get it, they're just talking the talk and walking the walk to get their reimbursement from Medicare.
My mom did not die here at home, because by that time I was beyond off the ledge, and let hospice place her in a nursing home. After about 4 days of good sleep, I started to turn into a human again. She died in her sleep a week later. Hospice was there. And it was all good.
We are being sold a bill of goods about the dignity of end of life, etc.....and its a bunch of crap. No one gets a dress rehearsal for this end of life....and these organizations do no screening not do they care about family dynamics and whatnot. Its not their problem.
And what Crystal said - I'm still mad, and sad. Since my mom passed, no one comes over here and have left me the task of packing up this house of 30 yrs of stuff; to probate the estate; to settle the lien on the house; and probably sell the house and move elsewhere. I am mad and I'm not ashamed to say it. I have given up now over 2 years of my life, lost all my friends for the most part, still have no social life and wouldn't know what to do with myself if I was invited somewhere nice. I have my cat (sitting on the keyboard right now), and have actually been through training to be a volunteer with a wonderful animal rescue here in town...to try to re join the human race. Thank goodness for my job, where I am worth something.
Sorry for the rant. You are a wonderful person -- look what you are doing -- NO GUILT - if you have done all you can, move him on to a safe place and if people can't understand that, well, they never will. Do not look back, look forward. Look what you've done! You are unconditional love to him. Bless you.
Read these comments, dinagrey, and soak them in. You are doing for your father-in-law what no one else could. And, yes, he appreciates it, even if he's complaining and afraid.
Take care of yourself. You've been through a lot and there's more to go.
Carol