Post of a more personal nature with thanks to PIXIE.
on 01/05/2009 at 01:09 PM
The treatment of the 101 year old man was terrible, but if you think the same types of things aren’t happening here in America in our nursing homes, you live in some kind of “Never Never Land.” What is being done to our elderly in nursing homes is criminal, IMHO.
For more than five years, I had the responsibility of 24/7 care for my Mother after she suffered two debilitating strokes. The first took her eyesight, the second took her ability to recognize danger. Neither affected her intellect and she was as sharp as ever right up to her death at age 94.
After each stroke, she spent some time in hospital and then additional time at a rehab facility, before returning home. In the second instance, I had to leave for several days to fly to another state where I was under subpoena to appear as a witness in a court case. I made arrangements for her to be moved to a nursing home for a 2 week stay, so that I could leave. She walked in under her own power, was fully cognizant, and everything seemed fine to me as to the facility, the cleanliness, the attention of the staff, etc.
My Mother was perfectly able to make decisions about her own care, she just couldn’t see anything well enough to read or make out friend from foe, yet they treated her as if she was not competent to make decisions about her own care. They treated me as an enemy and her like a child. And for what? I’ll tell you what. Money! She had her own private insurance plus Medicare and that is all they cared about, a body count to get their money. They’ll go to any lengths to get the money.
As it turned out, I was only gone for 4 days, not the two weeks I had expected, so when I showed up to take my Mother home 10 days early, it was a surprise. What I found shocked me so much, I haven’t gotten over it yet and it is now 6 years ago.First, I had a hard time locating my Mother. She had been transferred out of the beautiful room she had been assigned when I left and dumped into the Alzheimer wing. A total snake pit that still makes me shudder. She had been tied into a wheel chair with a leather strap around her waist and fastened in the back and her hands were strapped down. They had her in diapers and left her to sit in her own waste. She could not feed herself or take care of her own sanitary needs. When she saw me, she began to cry and begged me to get her out of there. It was devastating to witness.
When I got her out of the wheel chair and began looking for her personal belongings so I could get her out of there, they called the cops and blocked us from leaving. They said that I was abusing her by taking her away from “qualified” caretakers. It was the beginning of a year long nightmare that cost us both a huge amount of money. Lawyers were involved. They nearly killed my Mother in only 4 days, completely destroyed her will to live and had her so medicated, she barely knew her own name until I got her system cleaned out. And the filth. The smell. I can hardly type this because the memory is so traumatic. The medical staff was a joke. Most could barely speak English. The doctors couldn’t be bothered with someone whose life expectancy had already passed the high point and the nurses, don’t even get me started. Useless!
There is something systemically and fundamentally wrong with a society that thinks that a family member is certifiable because they are ready and willing to care for their elderly loved one. There is something very wrong with a society that throws away their elderly.
P2P - you have just written about what I fear - but I have a couple of added variables that I can’t even begin to deal with. My mom is 92 and really needs to be in full care (she can’t move, dress herself well anymore) but taking her here is problematic. She does not really want to come, I already have a disabled person (22 year old son) and it would be like taking a viper in as a pet. Not sure that any of us are up to it. I also take umbridge that my two older siblings are beating feet to not be involved at all. The two siblings that had POA have both died.
And hence my problem - my feeling of obligation and duty careening headlong into reality - that I’d as soon take in a stranger than my own mother.
I’ve seen it from many angles - an Army veteran crying naked in a bed on the AIDS ward (he didn’t have aids but rather bone cancer) because he was afraid that he was going to die alone - because his wife had to work (?!?) since she knew he was dying and that she’d be full support of the family afterward - the church my best friend was in set up a schedule of volunteers to be in the room with him as much as possible. I vowed then never to let my hubby die in a VA hospital. Ever.
And I worked in a mental hospital - as you said - a snake pit with uncaring Docs and nurses - made me pray that I never sucummed to a mental illness.
I’ve struggle most of my life with the mother issue - did not even suspect (as I am a medical train wreck waiting to jump the rails) that I’d be the one left standing and have to sort out this mess. I love her but am convinced she hates my guts - not sure I really want to voluntarily bring it (strife) into the house.
We shall see.
P2P ...
Wow. I have never read anything like that outside of a fiction novel. I believe every word but I’m certain you must know what it looks like in print. A horror story from a Vincent Price movie.I don’t know how you managed to keep your temper in check long enough not to go charging in armed to the teeth. It had to be maddening for you. Gosh I honestly think I’d have lost it had my mom ever been in a home and treated that way.
Our situation here not the same but it’s not great. However, you and Wardmom sure have had your crosses to bear and show strength above and beyond if I may say so.
Currently, my wife’s mom is bed bound and has been for a couple of years. She gave up on herself and became more then a burden. She became a curse, which I don’t imagine looks very well here. I plan on posting my journals in the near future, but nothing to compare to what you and Wardmom have had to put up with. Although I have said before and I know I mentioned it to Wardmom, I’m watching my wife commit suicide by mother. They were always very close and no friction at all between the two. A home is out of the question and so my wife is really on an emotional and physical roller coaster. Although there are homes with good reputations here, I think, it’s stories like yours that are common because there are so many homes like that. Nobody wants to end up in “a home.” And for good reason(s).
What in the world made those people think your mom needed to be restricted that way?
Did they offer any kind of explanation? Not that any could explain what you have described.Currently I’m witness to extreme old and very helpless age and I will be very honest.
It frightens both of us. The wife and I.With Compliments and Good Wishes to both ...
I was lucky in that my Mother could make decisions for herself up to the last couple of months of her life. This was a blessing, but also a curse because I knew that I was doing what she wanted me to do, however, the medical powers-that-be did not always recognize that the instructions I was giving them were coming directly from my Mother and not just something I was demanding for my own benefit. One rehab tech told me that the medical types weren’t used to dealing with someone smarter than they were and did not take well to having a family member watching them or double checking them on things like medications, treatments, rehab, etc. He told me, “they hate you because you are too well informed.”
Right away, after my Mother had her first stroke and was still in the ICU, I asked her, “what do you want from me?” She told me that all she really wanted was for me to help her preserve her dignity and be her spokesperson when she couldn’t or wouldn’t speak for herself. Many years earlier she had signed all the pertinent documents giving me her powers-of-attorney for both finances and medical care. I advise everyone who is thrust into a caretaker situation to make sure those documents are legally executed and on hand. The Power-of-Attorney for Health Care and Directive to Physicians are the most important documents you will ever have, if you end up having to deal with doctors, hospitals, etc. as a Caretaker.
My other advice, that I can’t stress enough, is make sure that if you have to resort to outside care or an outside facility, there is some kind of schedule of visitors. Patients who have family/friends coming regularly and randomly get far better care than those who they think have no one who cares. And you cannot allow yourself to be intimidated. This is hard because the whole thing is intimidating. I’m an only child. I had no siblings to talk things over with and no one to stand with me against the medical types when they didn’t agree with what I or my Mother wanted. You are already operating almost on autopilot and you will be oh so tired and often discouraged. You go through periods of depression and periods where it does seem like war. The patient, no matter how much love is there between you and them, will balk and you will become the enemy to them on those days and it is hard not to “hate” them back at those times. You will feel terribly guilty and on other days terribly resentful, but you have to allow that you are human with normal human emotions and not let yourself drown in guilt at the idea that you aren’t doing enough or not doing things right.
You can’t count on friends or even other family much of the time. Everyone will want to tell you what you should do, some will think you’ve lost your mind for taking on the role of caretaker, but you have to keep moving and not think yourself to death. Autopilot. On the one hand, you must keep moving forward and convince yourself you are doing your duty and doing what you know is right in your heart, while on the other hand, you must take care of your own needs (without guilt) or the resentment will overwhelm.
My Mother had been a high-powered executive and was very independent and used to being in charge. She was a terrible patient because she couldn’t stand to be pushed and prodded and, most of all, she did not like anyone telling her what to do. You will have to adjust to not being “the child” and somehow get your mind around the fact that roles have been reversed and you are now “the parent.” This was the hardest for me as it also required me to reevaluate everything about my relationship to my Mother. I had always been in awe of her, I never saw her be weak, and yet suddenly she was afraid of everything and looked to me as her protector and her armor against the world.
As hard as those five years were, I wouldn’t trade them for all the money in the world. I got to know my Mother as a real person and not just this elegant and brilliant woman who swooped in and out of my life and who never let them see her sweat. I found out that she had just as many questions about how to live successfully and happily as I had, just as many fears as I. I found out how much I meant to her and we became closer than we’d ever been. We became good friends as two grown women equals, rather than as parent to child. Whatever lingering baggage we had between us was resolved.
I miss her terribly since she died in 2004. Even now a sight, a sound, a smell can bring back memories and reduce me to tears.
Oh, and remember, no one is going to give you any awards for putting your own life on hold to become a Caretaker. No one is going to give you kudos for being there 24/7 and you will doubt yourself and your own decisions. You cannot beat yourself up for not doing enough or for the times when you were too tired to go the extra mile and let slide some things you know you should have done. There will be plenty to heap criticism, few (if any) who will understand ... until they find themselves in the same position, then all of a sudden the light goes off.
My husband of 32 years couldn’t deal and he left me for another woman, so much for the vow of for “better or worse, in sickness and in health.” My friends all drifted away because I was never available. After my Mother died, I tried the dating scene, which was hard enough after 30+ years, but made even harder because at that point all I wanted to do was sleep soundly through the night and I really just wanted to be held and have someone protect me for a change. Talk about driving the guys away, that’ll do it. I think it took me a good 2 years to recover and finally feel rested and ready to face my own real life again and look to add some fun back. In fact, I met the Skipper (Allan Kelly) right towards the end of my Mother’s life when I was about as down as a person could be. I discovered BMEWS and used to check it the last thing before going to bed at night because I could count on the Skipper having something up that would make me laugh and laughter really is the best medicine. I discovered that if I could fall asleep with a smile, I had a much better chance of waking with a smile.
Pal2Pal & Wardmamma - such heartbraking stories.............
Peiper - thank you for your kind words.........My brothers & sister & I now find ourselves in this type of situation - my Dad (now 92) and his wife have been living with her son for the past 8 years since they both became disabled..........It has now come to the point where they both require care 24/7.......due to problems with their daily care, it appears that we must place them in either assisted care or a nursing home. Now it won’t be a problem placing Peg, my Dad’s wife, as she is in the throes of dementia. However, Dad is a different story - despite being disabled, his mind is still sharp & he refuses to go to a home. He has plenty of money for his care but refuses to use it as he thinks he should leave it to me & my siblings........We are all now in constant communication via phone & e-mail as to how to convince Dad that the time has come for his further care outside of his home & that we don’t want his money - he must use it for his care...........We know that there will be anger from Dad when this decision comes about & I fear that once he goes to a home he won’t survive as I think he will feel abandoned...........We are having communication as to who will present this to him - he lives in Maine & I am in St. Louis, one of my brothers is in Houston. We have a brother in CT, a brother in R.I. & a sister in PA - hopefully those 3 will be able to travel to Maine to convince Dad as to what he requires for further care. It has just become too much for Peg’s son to provide the 24 hour care that they need.................
I must say something else - As to my previous post about negligent care, I am aware that there are excellent hospitals & nursing homes and then there are other facilities that are very poor with regards to patient care. I have been lucky to have worked in excellent facilities during my nursing career. I have witnessed patients coming into my hospital from nursing homes in deplorable condition. We always strived to give these patients the best care possible. I have a story about a physician I worked with for many years. He came from another country that was occupied by the Japanese during WW 2 & he was cared for & protected by his grandmother - this inpacted his future as a physician. He was the one who accepted nursing home patients admitted to my hospital. I was a supervisor at this time. Now this physician tried everything in his power to restore these poor patients to some form of viable dignity. One time when he ordered a feeding tube for a severely dibilitated patient, I asked him why he was doing this. His answer? “I love the old people”. This says it all.............
Posted by Pixie
01/06/2009 at 09:52 PM
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