About 6 weeks ago my 81 yr old mom became sick and was admitted to the hospital. From there she needed rehab in a nursing care setting. (I have cared for my mom in her home for the last 5 yrs. Alone and all by myself. Talk about burnout I had it. Her demands were constant. The worry was killing me.) So back to what i was saying. She entered a nursing home for 2 wks of rehab. Exactly 2 wks to the day- back in the hospital. This time serious, and in the icu. Bacck to the nursing home for more rehab. We had a meeting last week and all agree that she needed long term care and that she would stay there permantly. :'( 2 weeks almost to the day(thanksgiving) she was admitted back into the hospital in critical condiction in the icu again. Her immune system is so week. She has never been this sick. She has copd, chf, and dementia. Her lung disease has progressed so much, she never fully recovers and now it is affecting her heart. I can't help but feel that if she was still at home this might not have happened. The doctor did say that she is surrounded by new germs and she has a weekened immume system. I feel like I need to bring her back home and keep her well. What do I do? Sacrifice me and keep her well or send her back to the nursing home and watch her decline. The drs told me yesterday that one day she will not bounce back from this. I don't think I can handle the guilt of this. I have already lost her to dementia but I don't want to lose her. She is my everything. Does anyone have any thoughts?
Her condition is CHF. COPD, AFib, Dementia, and she is failing. Today I learned that her PT will stop tomorrow, and Medicare will stop. They think she is to much for me to care for but her nurses think she will be fine at home.
My problem is burn out. My head feel like it has a band around it, and I am feeling guilty at the concept that i may have to make her permanent.
she can't getr phlegm up, causing the pneumonia, so i feel it will be only a matter of time before this happens again. The nurses at the hospital tell me one time she will just not rally at all- I am at a cross roads as to bring her home, or leave her in their care. the nursing home she is in for rehab is the best in the area....I just cringe at it!
Since the break she has CHF, COPD, Abib, and the dementia gets constantly worse. This year she has been in the hospital three times with pneumonia, and is currently in Rehab. The facility told me today that her PT will stop tomorrow, and I am at a cross roads as to what to do. I want so much to continue to care for her but I am losing myself. With this last bout with pneumonia her kidneys failed, and they gave her only a couple of days to live. She was able to tolerate one dialysis treatment and she pulled through. The nurses at the hospital tell me one time she just won’t rally. She gets a lot of phlegm and has trouble getting it up, hence problems.
She gets weaker each time, and I am not sure I can physically take care of her any more but I also can’t put her long term in a nursing home. The place is Ok as they go, but I feel like I am letting her down. The nurses at the facility think she would be Ok for a while at home. The social workers thnk she should stay. I am trying to assess the situation myself and decide, but I am so torn. My head feel like it has a constant band around it. My boyfriend just wants me to make a cut and dry decision and gets mad when I go back and forth, but it is my mom
I had been "brought-up" Episcopalian, but my mother encouraged me to find what was right for me. I converted to Judaism, Catholicism and finally began reading about Buddhism. She knew about Buddhism. I only mention that because that is where I found what sounded true to me. Buddhism is not about deities or supernatural being worship, but more or less, scientific truths. The teachers are masters at helping people find comfort in the form of humanity we are stuck in.
Let me offer the following video of someone talking about loved ones sufferings. No one in Buddhism ever tries to "convert" anyone....there is nothing to convert them to! We are already human! But they sure do know a lot about compassion and reality. This teacher is Ajahn Brahm and is obviously someone from the U.K. or Austrailia or somewhere. I just found this googling "Buddhists thoughts on caretaking and aging".because I didn't know about him before. I hope it helps.
I suppose everything happens for a reason, but I would get a brutal medical law attorney and sue the hospital and the damn doctors. Careless and lazy hospital workers who don't wash their hands after tending each patient is part of the problem! Praying for your Mother, Bless her heart. Do not blame yourself! Hugs:)
We cannot "save" our parents from dying. For all the faults in medical care, for the most part, people do their best to care for the patients in their care. People with weakened immune systems get sick more easily. No one is physically immortal, on this plane, in these bodies. Your Mom will die, at some point, and there's nothing you could have done to prevent it. Let yourself off the hook. Love yourself for caring for her so well, and for seeking help when you could no longer do it yourself. And let go of the selfish label, it doesn't apply to you. At all. And it never did. The only thing you are guilty of is not being a magician in a way that no human can ever be.
Also know that changes in their demeanor and temperment can be hurtful, because I know I was thinking how now we had much more time together then, albeit for a wretched reason, but they do not necessarily find any solice in that either. Our parents generation was taught that if you can't do something for yourself that it was shameful. So perhaps that is a part of the dynamic here. Misdirected anxiety.
Sometimes the simplist thing can be very comforting to them, if you can find something they liike. Give her a manicure, brush her hair, etc. Or just being there, take a book to read to yourself and be there for her.
My heart goes out to you. Authentic talks and calm abidding may help in feeling the time is well spent.
I once read a story about a "Buddha" that visited someone whom had lost their child. The mother was just destroyed. She had very profound grief and did not feel her life was worth living anymore. The "Buddha" told her, "Go to every house in this village and the next village. Find a home that has not lost someone."
He gave her a task to show her that this is a part of life. She came to know she was not alone in her grief.
There is a good book just released, not necessarily about aging or advanced illness, but it has some very good information in it about you and your relationship with your physician and about "dealing" with them. It is "The End of Illness" by David B Agus, M.D. It is worth reading. A very good reference for us.
We have a ways to go in our system of medicine and our culture that thinks there is a cure and projected outcome that we have conjured up and expect to arrive at. We need to learn to let go and tend to our loved ones inner needs. The doctors will never be there for the emotional, mental or spiritual needs....at least not in our "healthcare" system.
But if you take away nothing more than this, as a great mental health professional told me once...."We all do the best we can."......That information goes a long way in being kind to ourselves, making allowances for others and for the impossibly high bar we set for ourselves.
The health care industry in this country is in the "just out of the womb" stage. They are clueless as to what we need, maybe that is in part because so many men are the "deciders" of what takes a feminine vantage, nurturing.
You were carrying the load of you, your mother, absentee relatives and the "unconscience" professionals. You did great. Really you did. If you are punishing yourself for your own perceived screw up.....let it go. How many times before this did you go through all of this.....ONCE !!!!! This was your first time! Do you give a first grader a copy of "War and Peace" and expect a book report on Tuesday? NO !
Remember this is not all there is and remember Steve Jobs last words....."Oh, WOW, Oh wow.....OH WOW !!!!
That said learn to recognize your simple and profound grief of her loss. The rug has been pulled out from under you.....find a new rug.
Love and hugs
I remember, back around 1960 ....early 60's....when mental health facilities paid people to provide some companionship to people, inpatients, to read to, play checkers, to provide some low stress companionship to them. It seems all practitioners due these days is cause more stress...and as we all know, stress kills. The most marked declines in my mother were only after hospital stays and sometimes were immediately life threatening medications they put her on. She hemorrhaged and had to be returned to the hospital after they put her on blood thinners. They then took her totally off the thinners. What we are not allowed to know is, was the right prescription ordered, was it the right strength, "may we destroy all the medical records, "we have so little space"....."
Just unbelieveable. I stay as far away from hospitals (procedures on steriods" facilities, and from physicians whom I don't believe. It's always time for a gut check when it comes to physicians, I've come to believe.
It's awful to watch people we love go downhill. It makes us feel helpless because some part of us believes we can love or will or otherwise do SOMETHING to bring them back to health. And I think sometimes we soothe our anxiety by blaming others, or a system.
More and more, I am coming to wish we all would see the time we have with the elders in our care as less of a battle to be won against something: old age, hospitals, The System, whatever. Maybe just bless the time and each other and seek more peace during the inevitable transition.
I can feel the arrows being sent my way. But I believe this is another way to look at the truth.
Should the arrows come, I will stand beside you and take my share. Manmade guilt and propaganda focussing on merely the physical aspect of life in our culture, minimizes the hope and joy of the "afterlife".
If one believes we are spiritual beings having an earthly experience, then we learn to let go and age gracefully, accepting the circle of life. Others shall continue on their futile journey to keep another's body functioning, fearfully playing with the natural lifespan. You have to draw the line somewhere. We do our best, but not at the expense of our own health and the limits of science.
Never apologize for expressing your honest beliefs! Hugs, Christina xo
I believe lizard's Mom passed in early January 2012. She is a Very Good Daughter. I expressed my condolences on her wall. We do have a Memorial thread here on Aging Care where you can post your thoughts to our friends who have lost a family member.
We become family, too:) Big Hugs, Christina xo