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newcomer to this forum

Posted by SLCSue (My Page) on
Fri, Sep 16, 05 at 15:55

I found this website by accident, and spent the next several hours reading and crying as I recognized so many stages of the years I have cared for my Mom. There is so much power in the sharing of your stories, and how I wish I had found you earlier in our journey through illness and caregiving.
My husband and I agreed it was time to move Mom into our home 3 years ago. She had alot of short term memory loss, was recovering from a radical mastectomy, and was no longer able to drive or take care of her house.
We have been through it all; incontinence, sibling disharmony, TIA's, strokes, a heart attack, and finally an angiogram gone awry that required emergency surgery to repair the tear in her femoral artery that almost cost her leg. She was finally discharged from the hospital, to a rehab. center where she continued her downward spiral. She stopped eating, slept 20 hours a day, was so cold all the time no number of heated blankets could warm her. Her primary care physician and I agreed it was time for us to accept that she had given up, and she was moved into an assisted living center with a hospice incharge of her care. No more search for a cure, just comfort.
Within a week of being taken off her meds, she is more alert than she has been in months, is beginning to eat again, and is enjoying being alive! I took a 10 day vacation from work, and we visit every day, looking at old photos together, spending hours just talking and holding hands. They tell me this happens sometimes with hospice care, but I am wondering if we should re-assess the decision, and try again to have her be well enough to come home. Has anyone had any experience with this? Thanks for any insight you can offer.
Susan


Follow-Up Postings:

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RE: newcomer to this forum

Hard question. She seems to be doing so well under the hospice care and routine. It might be a little risky to upset that just yet. They are watching over her 24 hours per day and can catch the smallest change that might slip pass you. Wait a couple more weeks to see if she continues to improve. Then sit down with Hospice and listen carefully to their opinions about her condition.
PB


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RE: newcomer to this forum

There is alot of wisdom in your response. And I know the 24 hour care is still needed, where they watch her with a level of training I don't have. I just am concerned that waiting, without being on any meds, means heart attack or stroke can happen at any time. She had been so ill, and was not metabolizing the meds properly, pulse and heart rate were thready, and 02 saturation was down to 82. Can just being off meds decrease the strain on organs enough for this much improvement?


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RE: newcomer to this forum

You really can't tell. Sometimes the amount of medication is just a bit too much and the whole thing just falls to pieces. Sometimes the body just can't handle some medications. You can be assured that the Hospice is going to be closely monitering her vital signs. How old is your mother? It sounds as if she has been through a lot. Perhaps she's just reached a point where she's going to rest and recover a little. Oh, and Welcome to the Forum. Keep in touch.
Frog


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RE: newcomer to this forum

Had similar situation ten years ago. Your description sounds somewhat similar to ours. Sounds like your mom was being overmedicated. This business of perking up after stopping them is tell-tale. From your description of previous problems, I'm thinking maybe they prescribed one thing after another but follow-up and re-balance over time may have been lacking.

Stroke? Heart attack? Any of us can have those any time. But the meds they use to treat them -- especially typical heart stuff -- can really make you feel awful.

Suggest taking a look at re-balancing meds. Suspect her metabolism is fine. Suspect somewhere on the way out from under over-dosing, her body may well have encountered the right balance as some of them gradually wore off. Suggest seeing if your people can find that balance of minimizing risk without ruining her life.

Mom's still with us. She's 93 and sharp as can be. Still bakes her own bread. We have at least a little fun every day. 10 years ago they just about drugged her to death. She came home from the hospital to die. Actually, in my estimation, she was within a week or so of dying. Family flew in. People said goodbye. The turn around began when she stopped taking ALL her meds. Found new Dr. Rebalanced meds. Within weeks she was totally turned around. Former Dr. wasn't paying sufficient attention. New Dr. does. She's been fine ever since. Thinking maybe your mom could be, too.

Hope I'm not over-stepping, but your description sounds so familiar.


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RE: newcomer to this forum

True. It's easy to over medicate. Doctor gives patient medicine A for blood pressure, makes her a little dizzy, so he adds B, which upsets the tummy a little, which is fixed by C which makes her constipated and that brings on D which raises her Blood Pressure, which means the BP medicine is increased and she feels like mud, then it starts all over again. It's hard to decide where and when to just STOP and start over.
Frog


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RE: newcomer to this forum

Thanks. I think that's what I was getting at, but couldn't put into words. While we had just one doctor things seemed smoother, but adding a vascular neurologist, a cardiologist, then another neurologist at the rehab center, we were up to 17 meds/day. And things were just getting progressively worse! Will set up appointment with hospice Dr. on Monday and discuss this.


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RE: newcomer to this forum

Excellent idea!! Once someone reaches a certain point, there is no reason why ONE good doctor cannot handle the entire thing. Sometimes one doctor's idea of good medicine is opposite to another's. You have to wonder if they ever think of getting together to discuss the patient. My BIL was given TWO anti-coagulates by two different doctors, yep, he ended up with internal bleeding. He had forgotten to mention the first medicine to the second doctor.


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RE: newcomer to this forum

Dr. that "rescued" us is GP specializing in gerontology -- old folks, in other words. He sees this kind of thing all the time. He's not into heroics -- just quality of whatever life may remain among his elderly patients. It's a different way of looking at things and of treating patients -- really a different kind of person. These Dr.s typically don't make tons of money, but they understand things others don't. Your first clue will be the time Dr. takes asking questions and listening to the WHOLE response before asking the next question. I'll bet your hospice group will know exactly what you're talking about because they, too, see this kind of thing all the time.

Every good wish to you and your mom. For me and my family, these extra years have been a precious time. Because of new Dr.s' intervention a decade ago, my mom has now seen and interacted with 4 great-grandchildren she never would have known otherwise, and they're now old enough that they will remember her. Hope you may have your own good stories to tell.


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RE: newcomer to this forum

I have to agree with all this. Medicines in the elderly infirm can be a nightmare. She should be able to stay on most of her heart and stroke meds in hospice. And she can be under hospice care at home, if that is what you want. It is a very good idea to talk with the hospice MD. She can also be discharged and readmitted to hospice at any time.
Good luck with all of this and welcome to the Forum. DerryW


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RE: newcomer to this forum

The hard question you need to ask is, should a stroke or a heart attack occur when your mother is off these meds, will she have quality of life if it is treated? That's what it really comes down to and what you should ask the hospice doctor. It's a difficult situation, I know. I had a DNR on my mother (who had brain cancer) because even if she had arrested and they had performed CPR, she was not going to get better as the cancer was incurable.

If your mother is alert enough and understands enough, maybe you could gently broach the subject to her and see what her thoughts are. I always knew my mother didn't want to be kept alive by machines (from the time I was a little girl, she was adament about that), so I knew what she would want.


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RE: newcomer to this forum

And that is how things are turning out for us. We met yesterday with the Dr and her nurse case manager, and Mom was an active participant in the conversation. We have had a DNR in place for several years, as she has been very strongly opposed to being kept alive "by machines". She said she feels better and more alive than she has in years, so if the end comes....so be it. She does not want to go back to the way she was before hospice. We explained that adding some meds, maybe different ones, could prolong her life. She says this way is just what she has wanted, and if she can keep the pain at bay (which hospice can do), she is happy. I spoke later with my husband, and he said the responsibility of having her medical power of attorney means acting on HER wishes, not imposing my own on her. It feels as though I am helping her die, after all these years of helping her live!


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RE: newcomer to this forum

There is a big difference between "living" and "existing." I have questioned the need to get Blood Pressure readings down to what would be good for a 20 year old. I feel 10 times better when mine is higher than my doctor wants. Not nearly as much mind fog either. I may have a stroke, but frankly, dragging around everyday with my BP in a good range is not my cup of tea. Being able to think clearly and have a little Get-Up-N-Go is worth a lot!!!
Frog


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RE: newcomer to this forum

Listen to your husband!!!! He's SO right...these are HER wishes, but I do understand what you are saying. After giving care to mom in my house for the past ten months and while she was in assisted living for many years, I have made it very clear to my son what my wishes are. Have I signed a living will? No, but that's next....


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RE: newcomer to this forum

Greetings from Canada Sue! although i don't care for a parent, i care for my hubby i just wanted to welcome you to our family! debbie


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RE: newcomer to this forum

Hi Sue....I empathize with you. You are really having to change your goals...but the basic aim of facilitating her life is the same. She is just able to call the shots a bit more. I'm sure it is a difficult feeling now. It is possible, too, that she may change her ideas if she has bothersome symptoms, but hospice is all about keeping her physically and psychologically comfortable...so I would "go with the flow" for now. Hospice will be a tremendous resource, and it sounds as if you are off to a good start. They are NOT about killing folks. Shalom.....Derry


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