what to do?????

• By Cheyenne
• Posted July 16, 2009 at 10:28 pm
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Well, I always get concerned when fever and disorientation occurs together, regardless of whatever else might be going on. I also get majorly concerned when I hear about low sodium levels and an irregular heart beat. The pace maker cells in the heart are dependent on the right amount of sodium and potassium. An imbalance can cause serious problems, even cardiac arrest. Dehydration or inadequate fluid intake or out put is another concern. I'm not a medical doctor but I can tell you this: My Mom called me one day and said she didn;t feel good. SHe never did that. Was there in 4 minutes. Irregular pulse, tachycardia then bradycardia, disoriented. Immediate trip to ER. She coded twice as soon as she got in the door and was taken by air ambulance to a cardiac treatment hospital . I would take this seriously. Equally serious is a nurse who does not know what to do. Are you missing anything? No. THe "it could be" stuff is bad enough, but the "no need for" is ridiculous. I know she is a complex medical status at this time and things can get unusual, but I would have had her in the ER, based on what you just related. Hx of low sodium? Get it checked out? Possible infection? Get it checked out, and immediately. Where are they getting these nurses? So I don;t think you are missing anything but I think Hospice is.

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• By jj803
• Posted July 17, 2009 at 9:25 am
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Usually hospice is only involved in cases thought to be terminal in the immediate future. In our community the outlook needs to be in weeks before they are involved. They do not, in general, treat or investigate diseases, but function to help the patient's comfort as much as possible. They are not trying to prolong life, only to reduce discomfort. I don't know that all hospice works in this way, but I think that in general their function is to reduce suffering in the terminal phase of disease. Certainly the issues you mention could hasten the demise of your Mom and I expect that there is confusion over how much treatment do you and your Mom want since this may prolong her suffering. If hospice is a helpful alternative to you and your Mom, you may want to investigate what their response would be to initiating treatments. Best wishes as you deal with these most difficult issues.

JJ

JJ

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• By JeanneS
• Posted July 17, 2009 at 11:47 am
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I hope this is too late, and she is already in ER.
Hospice is soothing, but not medically equipped to advise in my opinion.
I hope you found out the cause and mom is better now .

Hugs, Jeanne

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• By Cheyenne
• Posted July 17, 2009 at 2:02 pm
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I think JJ is quite right. I was confusing home health care with hospice in your Mom's case. Important , as JJ said, for everyone to be on the same page in terms of expectations.

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• By Karego
• Posted July 17, 2009 at 3:38 pm
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If your Mom is progressing into the last stages, it will soon be too late (if not already) for her to give any consent. I hope you all (family) are one in mind to complete the journey she began when she said she didn't want any intervention. Hospice should be guiding you all through this.
Know that we are mentally holding your hand as you go through this with Mom.
Karego

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• By Crossman
• Posted July 17, 2009 at 4:22 pm
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I am going to speak as an EMS person and not a patient. If you have brought hospice in, then your mother is near death (generally days if not a couple of weeks). Hospice is not going to treat her, except to aid in her comfort.

At this point (without being cruel), the UTI, the electrolyte imbalance or anything else that she might have going on should not be treated. You brought in Hospice to allow her to die with dignity. By going to the ER or having the nurse treat her for her symptoms is just prolonging her life.

If you want to prolong her life, then get rid of Hospice and bring her to the ER and let them fully treat her. You may extend her life by a couple of days or maybe a week.

This is an extremely difficult time for the family, but you need to mentally prepare yourself that this is the end and let nature take its course.

Does she have a DNR (do not resuscitate) order? Are there any other advanced directives that she wrote to speak of her treatment wishes?

I wish you the best in this difficult time.

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• By djtcl
• Posted July 17, 2009 at 10:03 pm
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You all make good points. I guess part of the problem is that the doctor suggested hospice back in November. So, we took the advice. She continues to surpass expectations! So now here we are in July and honestly I don't think she is near death even now. I mean of course within months but not weeks. (my opinion) I do think that we may not fully understand the capabilities or purpose of Hospice. Better yet, I think we do but it is just hard for us not to want to do something. Honestly, I think we all jumped the gun on bringing in Hospice and they are just not accustomed to cases like hers where she goes on and on. She is a fighter. Anyway, points well taken.

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• By Julie7
• Posted July 18, 2009 at 3:53 am
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I can't add anything to what has been said. Just want you to know I'm thinking of you. This is a difficult time and it is hard to not treat for symptoms such as your Mother is having, I know we were told that if I took Dick to the hospital to let them know first as they would discharge him. Medicare rules for Hospice won't pay for Hospice and treatment at the same time.
You can request symptom management but for Hospice that generally means pain relief.
Hugs, Julie

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• By nayers
• Posted July 18, 2009 at 10:47 am
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Dear dtcl,

You have a decision, that is to be sure. Hospice is there for the end and will not treat, only give pain meds for comfort. That, in my opinion, does not mean that your mom should suffer from dehydration or low sodium levels if you determine that she in not within days of death. This should be fairly obvious to you IF hospice has done their job and given you some guidelines to look for in her condition. They were in my mother's case and the day that she died, I had no doubt the morning of. I also took her off Hospice and she thrived for 6 months doing regular activities and getting treatments she wouldn't have been entitled to under Hospice.

That said, my mom had several bouts of low sodium levels and dehydration that I made the call to treat. I overrode Hospice and provided the care that was best for my mom. If you feel in your heart that she should be seen in the ER, then act...you will know best. Hospice only has a guideline to follow and sometimes, it conflicts with where the patient actually is. I think the world of them and my daughter works with a wonderful Hospice; however, even some of her patients have been taken off and later put back on. There is no right or wrong through this journey of death...we do what we feel is best for the patient.

Confer with your siblings and see how you are all feeling then talk to a Hospice case manager who can help guide you better than the nurse did. No matter what, you can only proceed with what you feel is best for your mother. I wish you love and comfort in this time of transition and surrender. My heart goes out to you and I can share your pain.

Best,
Nina

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• By jj803
• Posted July 18, 2009 at 1:45 pm
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Nina,

Thank you for your marvelous and informative post. You have presented some very good ideas and thoughts for all of us. Best wishes,

JJ

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• By nayers
• Posted July 18, 2009 at 3:17 pm
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Thank you. The hardest thing I've ever done is to see my mom go through bladder cancer and to not be able to fix it. The best thing that I did was to do all that I was able so that in the end I had few regrets. That is all any of us as caregivers can do. My mom died March 28, 2008 and I miss her incredibly every day. I often reach for the phone to call her and feel so empty that I can't. My message is to do what is in your heart as I did--it is all your mom or loved one would ever ask. Good luck to all.

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• By spartyman
• Posted July 19, 2009 at 9:52 am
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We just went through the home hospice thing for my mom who died May 3rd. When we chose hopsice we had to make the decision of what we treat and not treat. If we chose to call 911, etc. that would nullify hospice care but we could go back to hospice anytime we chose. We chose not to treat any further symptoms or health issues. She was 92, had lived a wonderful full life, and the UTI's etc., were really taking a toll. So we chose to just treat pain and comfort issues and let her have her final days in peace surrounded by her family who loved her immensely. Hospice was wonderful and we will be forever grateful for thier love and support.

Tom in Michigan

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