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Alzheimer's patient with possible pneumonia
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LWM158 posted:
My husband has end stage ALZ and it appears he is beginning to show symptoms of pneumonia. His physician had said getting pneumonia is the best thing to happen to an ALZ patient and he recommended no intervention. Hospice gives me an opposing opinion with need for antibiotics, etc.

Which is it? It's hard enough without receiving 2 opposing opinions.

Thanks for your help.
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cjh1203 responded:
I'm so sorry about your husband. You're right -- it's tough enough without getting such conflicting advice.

I think this has to be a very personal decision, and I don't know if anyone here can help you make it. I see what your doctor is saying -- that it's probably a good thing to just let your husband go -- but I'm not sure why hospice recommends the opposite. Normally, I think the major role of hospice is comfort of the patient, rather than steps to prolong life. Has anyone from hospice given you an explanation for their recommendation that your husband be given antibiotics? If not, I would definitely ask.

Someone here may know more about this than I do, and I'm sorry I can't be of more help. My heart goes out to you.

Carol
 
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LWM158 replied to cjh1203's response:
Carol, thanks for your input. The response from Hospice has certainly thrown me for a loop. The nursing home suggested a Z-Pack and if he doesn't respond to just give comfort. The director of nursing was surprised at the hospice recommendation. In light of the fact that one resident was taken to the hospital 2 nights ago with pneumonia and died the next morning I would have thought the q & a at the morning hospice meeting would have pinpointed a proper response. I will meet with hospice again tomorrow and ask why they recommend antibiotics.

Thanks again.
Lynn
 
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cjh1203 replied to LWM158's response:
Lynn, if you feel up to it after meeting with hospice, I would be interested to know what they say.

I've been thinking about you. I'm sure you've been through some really tough years with your husband's disease. I hope you have friends and family who can give you the support you need as you go through this part of the process.

Best wishes.

Carol
 
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LWM158 replied to cjh1203's response:
Hi Carol,
I have been blessed with a great friend who has been a wonderful shoulder to cry on, laugh with and just be there. Unfortunately they have sold their home and moving back to Florida. Am sure we will keep the phone lines burning!

I signed on to this website a couple of years ago but was totally ignored, all the members then seemed to have a connection and didn't have time for a newbie. Glad to see that no longer exists! So many caregivers are struggling and need a kind word of support.

I will be glad to pass on the info from hospice after our meeting.
Thanks,
Lynn
 
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LWM158 replied to cjh1203's response:
Carol, the hospice team meeting was very enlightening....at least it made me feel better. The answer to the prn nurse's response of antibiotics was per the standards of this unit. Antibiotics are to used to treat an infection for the comfort of the patient but are discontinued if the patient shows no response. The premise being that the antibiotics will make sleeping and eating easier, but if the patient does not respond it would indicate the need for final stage comfort measures. It is still a choice that needs to be made by the caregiver but knowing what the choices are and why make the decision easier.

I hope this helps if someone else is facing this decision.

Best,
Lynn
 
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Judith L London, PhD replied to LWM158's response:
Dear LWM158,
You have been through such a long, hard journey with your husband. It sounds like the hospice advice you just received makes sense. Whether or not your husband seems alert, he is still able to hear your comforting voice, listen to sweet music he has always loved and feel the touch of your hand in his.

Here's to some precious moments together whatever the outcome.

Judy
 
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cjh1203 replied to LWM158's response:
Hi, Lynn. I'm glad the hospice people were able to give you a good explanation -- that does make sense. Have you made a decision about it yet?

Does your husband seem reasonably comfortable at this point?

I'm so glad you have a friend to lean on, but sorry that she's moving away. Still, you're right -- that's what phones are for! I'm sure you'll miss her, though.

This board has been particularly quiet in the past few weeks -- I'm not sure why. I worry about everyone we haven't heard from. Anyway, we always welcome new people, although it may take a while to get a reply since there are so few of us right now.

I echo Judy's wish for some lovely moments with your husband. This is a very bittersweet time, I'm sure.

Carol
 
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An_241941 replied to cjh1203's response:
Hi Carol and Judy, today's a better day for Doug. He was awake enough to eat some breakfast. He has always been a morning person. I did start the Z-Pac and so far he 'seems' to feel better. He sleeps most of the time, which is unusual for him but common for the disease. He still knows that we belong together but is not quite sure how, could be the Hershey bars I always carry for him! I think he is totally amazing, he continues to try to do things I ask him to do. He still loves hugs, who doesn't?

It's one day at a time but there are still more good days than bad and I am delighted that he is at peace in his environment and with me - though that may change. Life is still good.

Thanks so much for your kind words, a few words go a long long way!
Lynn
 
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cjh1203 replied to An_241941's response:
Hi Lynn. I'm so glad to read your good report about your husband.

What you said about the Hershey bars made me laugh, because chocolate seems to be a big part of everyone's life once there is Alzheimer's in the family! My uncle had Alzheimer's and, even though he had never had a sweet tooth, he just inhaled chocolate in the last years of his life. Other people here have said the same thing.

It's nice that your husband knows there is a connection with you, even if he's not clear on what it is. How sweet, too, that he tries to do things for you and loves your hugs.

The best thing is that there are more good days than bad. I hope that will always be the case.

Carol
 
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Judith L London, PhD replied to An_241941's response:
Hi Lynn,
I hope your husband continues to recover. He sounds like a fighter, too. I am sure you are a great comfort to him, and the Hershey bars and hugs seal the deal. I always found that ice cream is another great treat, but the Hershey bars are even better.

So glad that you know how to relate to him to make those magic moments happen.

Judy
 
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LWM158 replied to Judith L London, PhD's response:
Hi Judy, hope you are well. The holidays are so difficult for patients and caregivers, and your thoughts and kind words make life a little easier. Thank you so much.

Doug is feeling alot better but still has a bit of congestion. Hospice recommended a humidifier which I purchased. The nursing home said no I said yes. The humidifier is now in operation and it has helped!

He is eating better, though last night he was in his "terrible twos" and was throwing food and getting angry. But with soft talk and a promise of a Hershey bar we managed to get things done. This sundowners part is difficult on the staff, especially if there are several residents who have it. Several of us who have family there for AZ have banded together and watch each other's family member. This helps when sundowners syndrome takes over. It's like a full moon thing - it seems to be especially bad on everyone at the same time. Don't know if there has been a study on why a flare-up seems to happen within a group. It would be interesting to know.

Thanks so much for your caring words.

Take care,
Lynn
 
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onlysiblingwhocares replied to LWM158's response:
I believe that the "group" behaves the same. It's that way in any group setting, if one person acts one way, the others all mock that behavior. My mom did that when she was in the nursing home...mocked others behavior. But now that she is back home with me, she mocks MY behavior AND everything-I do...gesture-wise. I just wish I had some respite care from one of my siblings or anybody so that I could at least take a shower. It's been 9 days now and I feel awful without a shower. I have no help from anybody. I'm unemployed at this time but in classes (online) to learn a new skill...can no longer teach. My mom hasn't had sundowners syndrome once since she came back to live with me. I had tried four different nursing homes and none of them were any good.
 
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cjh1203 replied to onlysiblingwhocares's response:
I'm really sorry your situation is so unhappy. Everyone needs a break from caregiving now and then. What do your siblings say when you ask for help?

If you don't mind my asking, what was wrong with the nursing homes? Were they ones that specialized in memory-care patients?

I would strongly recommend you contact your local Alzheimer's Association. They can help you figure out what to do about getting some help with your mother, and offer you support and resources. You don't need to go through this alone.

Please come back here and let us know how you're doing. The board isn't very active right now, but I check in a few times a day, and Dr. Judith London can offer professional advice.

Best wishes-
Carol
 
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An_241941 replied to onlysiblingwhocares's response:
My heart hurts for what you are going through. Family support is one thing my caregivers need but, seems to be one thing missing with most of us. Is there a neighbor, family friend or Church member willing to come and sit with your Mom for a couple of hours so that you can have some 'me' time? In most areas there are Senior Services or Alzheimer's support groups who might offer some advice. I had invited my husband's family to come and see how bad off he was, and surprise surprise his actions that day were normal and the family thought I was the one who needed to go to the 'home'. It was a couple of weeks after that he was diagnosed with end-stage ALZ and was admitted to an ALZ unit.

You need time to care for yourself, stress wreaks havoc on your health. I'm delighted you are taking classes, I believe we all need to re-direct our thought processes especially when we are inundated with seemingly never ending stresses.

What happened with the nursing homes, if you don't mind my asking?

Take care of yourself and keep in touch with this board, it helps.
Lynn


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