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going back and forth with mother


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Old 05-14-2016, 10:26 AM   #1
momo59
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going back and forth with mother

My mother is 89.Since Febuary she has had multiple uti.She would get delirium /Run down. She went to rehab and was discharged 4-16-2016.She did pretty good for about a week. We ended up taking her to the hospital for the 4th time since Febuary.This time at discharge she was sent to a skilled nursing/ rehab. She has been there since 5-7.She has done very little rehab due to her weaken state. She has afib, congestive heart failure and chronic stage 3 renal disease. She has bouts of clarity mixed with bouts of delirium. I am one of 5 siblings. We keep updated through text messages after we visit. One day someone will say oh sheís doing really well today. I go visit and I see both sides, they change in waves, going from clarity to delirium. Weakness is ever present. She has been put on oxygen and started breathing treatments on Tuesday. Yesterday she was diagnosed with pneumonia. She had been on a strong antibiotic since last Friday for the uti. Now because of the pneumonia she is been givin anti biotic shots 2 since yesterday.Once again I have gotten a text that she is doing better. I have done some research on all of her conditions. I read that pneumonia can be fatal in the elderly especially with her other conditions. I hate seeing my mother like this. I am not fooling my self. I donít have much hope that she will recover from all this. Yet when I hear earlier in the day she is doing better,I cant help but have some. At the same time it is hard to get hopes up for them to be shot down a short time later. So I guess what im asking is even with a not good prognosis, is it normal to have good and bad hours with these conditions.I know one can never truly prepare to lose their parent but I donít want to be misinformed and believe I wonít lose her. Just to lose her and be blindsided. The hardest part is going day by day never knowing which way it is going to go. Does anyone have an experience like this? Have you had these feelings? I feel bad, like Iím giving up, In reality Iím trying to be realistic.

 
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Old 05-15-2016, 06:18 AM   #2
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Re: going back and forth with mother

Unfortunately, I have allot of experience dealing with similar conditions. I lost my dad a year ago after many similar hospitalizations and rehabs.

At your mom's age, the system is breaking down. Unfortunately, UTIs and pneumonia are diseases which are common in the elderly. You asked if it was normal to have good days and bad days, the answer is yes...however the reality is that she is going to keep getting infections until she can no longer recover from them. She cannot live on antibiotics forever and the risk of devloping C-Diff from the antibiotics is very high. Once she develops this condition, she will not feel well again.

Has anyone talked to you about hospice care for your mom? You may want to consider keeping her on comfort measures as opposed to aggressive treatment for HER. We, as family, want to do everything in our power to keep our parents alive as long as possbile, but if your mom is not responding well to the therapy and the drugs, you may want to redirect your thinking to "what would mom want?". Has any of your siblings talked to her about her wishes? Does she have a living will or a power of attorney to make decisions for her? This is the time when if you dont already have all of this in writing, you really need to get it done! There are decisions coming which one of you is going to have to be strong enough to make.

Im really sorry. I know exactly what you are going through. At some point, you mom is not going to recover, especially with the CHF and the related pneumonia which is complicating the situation.

Please request a family meeting at the facility to talk to the doctor and get a true picture of what they think you can expect. This will open up the door to getting all of you on the same page. Its easier to choose one sibling to be the spokesperson, than have multiple people relaying information. What you are doing right now is relaying on minute to minute, when what you need to be looking at is the bigger picture.

Your sister might see mom in the morning, when she had a good night sleep, and the report that she did well overnight is confusing the bigger picture. Your brother might see mom at 5 in the evening when she is exhuasted and hear that she hasnt had a good day. By 8 pm, mom might have just finished a breathing treatment and sounds good again....this is why you are confused about the real state of the situation. Again, I urge you all to have a family meeting with the doctor at the facility who is taking care of mom and hear it together- based on the future outcomes, not the minute by minute replay.

best to you...this is a very difficult time.

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Old 05-15-2016, 11:45 AM   #3
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Re: going back and forth with mother

thank you for your reply. I have suggested the meeting. The trouble is we are all not on the same page.My oldest brother ,is in denial.He truly belives she will come out of this and return home.While the other 4 of us believe she will not return home. It has been ruled out we will not have her transported to a hospital for invasive treatment. She does have a dnr. .Also We believe the stress would be too much for her. I believe the facility she is at is doing everything to keep her comfortable and to me that is important. The best outcome renders a quality of life not a quantity. Your response about the different times of the day made good sense o me.I find that now to be true.I was there yesterday and witnessed a change in a matter of minutes.Going from incoherent to coherent in a few minutes.No medical staff has said her condition will result in death.Does that need to be said for hospice? No one has mentioned hospice either.

 
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Old 05-15-2016, 03:31 PM   #4
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Re: going back and forth with mother

Nursing homes and rehab centers historically do not bring up hospice. There are qualifications for hospice such as the patient must have a qualifying condition. The disease of CHF which you mentioned qualifies, IF she meets requirements with how far the disease has progressed. Only a hospice nurse doing an evaluation could tell you if she meets criteria. Another criteria is dementia, if she is full care and cannot make any decisions for herself, if she cannot dress herself, bathe herself, feed herself, these are some of the criteria they look for with dementia. Constant infections and constant antibiotics can fall under failure to thrive, which is also a hospice criteria. There are many things which make a patient eligible and medicare pays for it 100%; however again, nurses and doctors are put on this earth to heal...not to give up, and hospice does follow the "no aggressive treatment" and "comfort measures only" school of thought. Many family members have a very hard time getting to that point of acceptance. Doctors are afraid to mention it because it will appear they failed the patient/ family. In many cases, a family memeber has to request a hospice consult. It costs nothing and maybe you'll get good news and find out she doesnt qualify yet....that would be positive! But at least you will have had a chance to meet the hospice personnel in your area and find out what they can do for mom. If you are really interested, open the yellow pages and find a hospice in your area and request a telephone conference with them. Tell them what is going on, they will have suggestions for you, they may even volunteer to come out and do an evaluation. Again, it costs you nothing at all.

You sound pretty realistic about the whole thing. I too had a brother who swore dad was coming home that last time, and refused to go to the hospice meeting which I requested in the hospital. It wasnt until everyone else told him what the hospice nurse said and what the prognosis was for any sort of quality of life that he gave up and said "Do what you want". It wasnt what I wanted, it was what HAD to be done. I have zero regrets as we took dad home on hospice and he would have died comfortably at home if he hadnt fallen, trying to get to the bathroom. WIth his fall, he actually broke his neck and was 911d back to the hospital, where he passed away, still on hospice, 2 days later.

Terrible situation and one I wouldnt wish on anyone.

Stay strong. And good luck! Know that someone is thinking of you and your family and sending hugs..
MSNik
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Old 05-20-2016, 02:17 PM   #5
momo59
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Re: going back and forth with mother

we had a meeting scheduled with her doctor and the doctor cancelled. Im very upset,This was a much needed meeting and now i believe it will never happen.She has had 3 good days and not knowing what the diagnosis or prognosis is i harder for me to take than if i knew. I am afraid to hope.

 
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Old 05-21-2016, 03:34 AM   #6
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Re: going back and forth with mother

Is the meeting rescheduled? If not, I would go straight to the administrator of the facility and start screaming.

Doctors who work in nursing homes often have their own practices and patients who are in the hospital as well. I can understand if something emergency came up and a family meeting got pushed due to an emergency; but if it wasnt rescheduled, you need to start getting loud.

The administrator of the nursing home usually will have an open door policy for families- have you met him or her? Go there asap and wait outside their door. Get answers. There will also be a Director of Nursing at the nursing home, She or He, will be next in charge.

I hate to say this, but you are going to have to become the advocate for mom at this point. Mom cant advocate for herself or demand answers, so you are going to have to do it for her. Its a horrible situation. One which I have been in too many times, but please know that you will get through this. Find out why the doctor cancelled and demand to know what is happening and when he WILL be available to give your family 15 minutes.

Good luck!
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