I'm so unhappy and feeling trapped.

He was only sent out from the facility due to a slight drop in blood pressure & he does have 2 md's at the facility that could have been called for advice on what to do & skipped the ER. I really do not believe that you should need hospice or pallative which isn't available to people not imminent to avoid all these trips to the hospital. Upon arriving at the ER he had a 13 WBC and mild pneumonia. Although he was ambulatory, continent & swallowed everything solid by mouth they injected him with 3 strong IV antibiotics. Next morning the culture results said none of these 3 would work. They dc'd cold turkey all 3 & replaced it with 1 he got better. Had a 5 WBC Sat-Sun, then developed CDiff from the 3 anti. as they say. They said the anti. caused the CDiff. His CDiff caused his WBC to go to 47. He got a Toxic MegaColin. They said if they did not intubate, put a breathing tube down his throat (for surgery), put him on general anesthesia & remove his entire colon & put him on a colostomy bag strapped to his abdomen the rest of his life that his colon could rupture and that it was causing serious sepsis. During this time his temp remained 98 something, he heartrate remained in the 80's, his blood pressure dropped slightly and he moved to the ICU needing blood pressure meds IV. So the point I am making is when they are having a 55 WBC & needing emer. surgery their temp & other stats should not be stable like this & they may be trying to force unnecessary surgery. Anyway, in the meantime he kidneys (formerly perf. healthy) have also been damaged by the antibiotics from the ER.. So now if he does have the surgery with general anesthesia he will also need dialysis. Great. So I said no to the colon removal with general anesthesia & yes to the dialysis to give the kidneys a chance to come down to a normal level and support the antibiotics he is on for C Diff. The gen. md in the ICU said yes to giving 24 hour dialysis to get the kidneys in check to see if we can avoid or get surgery later. The kidney specialist would not order or let us start the dialysis unless I first let him be cut open & go under the knife. I said oh, please start the dialysis. The main md said at 10am yesterday that he could start the dial. by noon with her order. She took her sweet time & arrived at the ICU at 2pm at which time she refused to let him have the dialysis. I was beyond myself not having had any sleep for 3 days & being sick myself. Now I raised hell with the gen. md for promising this and 15 mins later I get a call from the nurses to consent to the line in the chest to receive dialysis. The dial. was not even begun until 7pm. This is an unnecessary delay & caused unneeding suffering. Now we cut to this AM. I call in and after 10 hours of constant dialysis his WBC has dropped from 55 to 22.2 but his colon is still distended & there is still no urine
output but the 10 hours of constant dialysis is equivalent to 1 & a half hours of a normal 4 hour dial. treatment which means that he hasn't even completed 1 full treatment so it may be too soon to tell if he is able to have the antib. alone treat the Colon (Cdif) or if he will still need to have surgery & general anesthesia. The thing people don't think of is that you cannot qualify for hospice or pallative only because you have alz. you have to also be 6 months or less to death & a doctor's order. 3 months ago I tried to get him on for his heart disease because he had a heart attack 3 years ago & recovered but started having a low heart rate. I figured between the heart & the alz I could get him on hospice & avoid the hospitals considering what this hosp has done to him but no. He could not get hospice.
So, considering that this hospital since Thursday gave him a toxic mega-colon I would very much like to get him on hospice to avoid future hospital visits so he can age in place at his long term but I still will not be able to get him hospice.
What they need to do is change the rules of when a SNF is able legally to send out to the hospital & when not or the stay & care don't get paid for & the SNF has to pay a penalty for sending a patient out to a hospital when they could have treated in house or at least first tried to treat in house and also call the POA for their opinion on whether to send out.

KathleenPlano- I am a bit confused by your comment above, because in a comment back in August on a different thread, you said your mum died in July, 2013?

modernbird, please, don't ever truly accept that you are the one who trapped yourself. None of us should ever feel punished by the fact we have (maybe too much?) love for our people. I think caretakers should always have the right to feel overwhelmed, trapped and overworked. I did. But there is little to no room for guilt, either about the situation we find ourselves in or like kazzaa, wanting to be loved again.

kazzaa, The Frenchman who said, "Your place or mine?" ...he's a Frenchman... so what exactly surprised you about that?? lol (I'm allowed to make fun -- I am a Taco-Soufflé.) And as for eyes locking across a crowded room, are you going to open a nightclub at your home? :) I think 1tired has a terrific idea about online dating for you. Be choosy, take your time and screen, screen, screen to your heart's content. It doesn't take time away from home and you can do it in your jammies and nightcream if you want! :) Then get respite care and GO.

At this point I should probably post a disclaimer to be the very last person on earth to give out romantic advice. (snort!) :P Anyway, glad your baby is home again.

The very best thing about this place is that no matter how you're feeling or what you're going through, there is a whole community of people who have felt that/done that/been there -- exactly where you are. No matter how ugly or horrible it feels. I couldn't stand this place at first because everything was so real and scary to me.

My Mama is gone now. I still come back, for some reason, and still find comfort and hope here.

Hugs to all of you. You are so, so amazing.

I talked to my friend who happens to be a phsyciatrist, yesterday. He said that it was my choice to be trapped and unhappy. He said I have the power to make my own life happy or unhappy. Right now I hate him.

Psychiatrists need therapy more than anyone (in my opinion). Obviously he/she never was a live-in-caregiver for a parent, it's always easy for the people who won't provide care to say that those of us who want our parents to be taken care of "chose" to do it! My sister who is not a psychiatrist said exactly the same thing, she said I "chose" to care for my mum. My sister "chooses" to believe that so she feels less guilty about not doing anything to help.

Yes, my mom died in July 2013, I am referring to my dad's hospitalization right now. Did I mention something about my mom in the comments that would seem like she was still alive? I was only trying to emphasize what I am going thru with dad right now. If I had mentioned her passing it would have distracted from the point of my comments which is dad now. My end point of both comments is the caregiver is always the caregiver whether they are in facilities or not and it really isn't as if you can back off & disengage to put your own care first while pros are caring for them because the SNFs are understaffed & underfunded. Also important is that those paid to watch them will never care as much about the patient as a family member. They may be excellent at their job but even the most excellent of the building or the industry will never care as much about the patient in a setting like that (where they have many to care for) & they do have other priorities. I have never known a family caregiver that cared about anything except the patient (their comfort, their hapiness & their health). There is no paycheck or a future of a paycheck that even comes into the mind of a family caregiver or the future of a job. Only the patient. It matters. I also truly believe they need to overhaul under what conditions a facility sends a patient to the hospital. There are many who are in a facility who cannot be qualified or put on hospice as it is 6 months or less to death & an md order is the only way to get on hospice & then you can keep them from the hosp. Until then either the hospitals need to learn to treat the elderly & demented differently med wise in the ER taking into account their fragile state or the nursing homes should only be sending them out to the ER under very grave conditions like crashing or critical so that they cannot make a colon a toxic mega colon. I am telling you this hospital & its mds have told me on the phone that the er meds have killed my dad's colon & kidneys. He should never have been sent there. He would have been better off staying in the facility.

KathleenPlano- yes, you said that you are an only child of two Alzheimer parents and they are in skilled nursing but in 2 different facilities and in different directions from your house and that you don't get 8 hrs of sleep a night, 3 meals a day or a daily shower. You just posted that comment on here this morning and yet a couple of months ago you said your mum died in July.. so your comment is confusing to me?

Skyzoonie my therapist said the same to me and they are right! we have made this choice ourselves. My family are getting on with their lives so why cant I mums been very difficult this week and ive realised that I cant do this alone i cannot control my mum and her moods, behaviour she just threatens to kick me out of the house and lies to family. She moves with me and I put her name down for a NH my family cant really argue as they have not offered to give up their lives to look after her. We have a huge battle on our hands now as mum will refuse to do either she will demand to stay in her house even though she is not safe? came home this morning after staying with a friend and shes been up PAINTING again! she wont be happy until she breaks her neck but that wont happen because she have me committed before this happens. At least in a NH my mum will have to do what shes told and be safe i cant do this anymore for much longer shes in a bad mood nearly all the time now and just hurls abuse at me.Seems everything is my fault her whole bloody life is my fault?

I thinkI just found group of people that would understand my situation. It is very much like many of yours. I have found that as I moved my mom into assisted living, it has helped with the day to day stressed. I know many do not have the funds, but often there is state funding for certain situations. There are also some church or non- profit based care homes that may work.

In all honesty I do feel guilty a lot, but I know that she is being cared for much better than I could. I live 2 hours away, and she did not want to leave her city to move in with us. I go down every other week, sometimes more often. I think it is important for everyone to have a support group be it a church based or community based group that can give you encouragement. Praying for you all.

you know there is something wrong with this whole system....most of us never thought that at the end of our lives (or at our late adulthood) we would have to deal with so many issues. it does no good to complain because I read so many who have it so much worse than me, but I feel like my life is over. my mother moved in with me 4 years ago and a year ago she had to go to a nursing home. her physical health is pretty stable but her mental decline is noticeable weekly. she no longer recognizes me and is disappointed when I come almost every day because I am not her 'daughter" (I am her only child). there is the worry about her, the worry about me, the financial worry....I never knew that I would be in this financial fix and feeling like I am committing fraud if I have to take some of her money to help keep me afloat........I go to work, to visit her, to church and to the grocery and it seems there is nothing else. most of my friends give good words....'i'll help if you need me' but they are not there to listen, to grab a quick dinner out, or to just 'be' so I am feeling like I have no one. I am an only child and my mothers family is all gone so there is no one to help with the emotional part of all of this. most people, if they have never been through any caregiving, just have no idea of what it is like so my friends (!!) tell me that I should feel so much better because I don't have to take care of her anymore since she is in NH. but I feel no relief. the NH is good but the expense and the responsibility still falls on me. I never thought I would have any inheritance, but I never thought at my age I would be so broke and living on Tang and McD. snack wraps. I feel so hopeless like there will never be anything to look forward to. I have lost hope......life seems like such a struggle. I finally do have some understanding of folks who get to the 'edge' and harm themselves or their loved one since it sometimes seems like you are just again a wall.......my mother is on Hospice because of some breathing issues but since she is so stable they don't offer much support. I am grateful she seems content at the NH and eats well and is friendly to all, but maybe I am grieving that I don't have her to talk to, have no one to talk to. no one ever prepared us for this....

Widen back and read this: Your mother is still abusing you. Contemplate this for a few minutes. Whether she realizes it or not it is an old and comfortable pattern for you both. You may even notice that your currently situation with weight gain, not caring for yourself, feelings of reward and guilt feel familiar or the polar opposite that it is nothing like that, which means it is exactly like that. Resist anything and it will persist. Take care of your needs without making your mother wrong. This will take 3 steps: Decide what you need to do (for yourself care), Plan (take small steps, act from a compassionate place and make your plan known, sister and mom and whoever you need the medical, etc attention form) Action (do what ever it takes to follow your plan, don't let anything get in your way, you may have to deal with a few bumps, but that is part of Acting Deliberately (instead of reacting), the bumps are part of the journey. Keep it simple. You don't need to resolve the past, change your mother or burn the fields - just decide deliberately what you will do next and do it.

Well, my mom has finally left. She's gone back to her life in another state,although it's clear that my sister and I will continue to be involved in her care in a way that we never were before. On the bright side, we know to make plans for assisted living or in-home care so that we are as prepared as possible when that time comes.

I am so exhausted! I have no idea what to do with myself now. For the last 8 months my life has revolved around mom and work - there's not been time for anything else. Is it ok to sleep and avoid people for the next week or so?

You have my vote! Revel in the peace and solitude, pamper yourself, and remember that it's more than ok to be 'selfish'. I wish there wasn't such a negative connotation to that word. Or that there was a better word for caring for yourself before others. It's impossible to give what you don't have.

Sleep, avoid people and eat massive amounts of chocolate if that is what makes you feel good and recharge yourself! No time like the present to pamper yourself! Breathe deep, you got thorough it and now can reclaim your life. maybe huddle with your sister to plan out what will happen next time Mom needs help !

My grandparents died in their seventies. My parents never had the responsibilites of caregiving of their parents and got to live their retirement years enjoying their lives. Now my parents are in their eighties and even though they live independently now, for how long? Will I be able to enjoy my upcoming retirement years, like that of my parents? What about my own children? Is this nation becoming a nation of retirees caring for elderly parents for generations to come? God bless the medical advancements for producing the founatain of youth pills for longevity! Too bad they forgot about the aging brain!