My mother has heart failure due to atrial fibrillation and 90% and 80% inoperable blockages of her left main and left descending arteries ("widowmaker"). I was told her heart issues are "not compatible with life" by cardiologist. 3 hospitalizations and 1 ER visit in last 2 months. Last ER visit she refused to be admitted as there really is nothing left they can really do for her, so we started hospice. The first 2 weeks she was really bad with sever SOB and sleeping most of the time. One night I thought was the end. But now she is able to walk down to dinner on her own without wheelchair for the past few days without major sever breathing issues. Is this normal? She seems so good after having been so bad. How can she be so good now? I know she still needs hospice. The comfort kit has been needed. But seeing how good she is the past few days, did we jump the gun with hospice??

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I am so sorry for what you're going through. I can empathize. My mom passed last October after her battle with CHF.

My mom was in hospice for 9 weeks. When she first entered, she also had a sort of rally. She showed more strength and awareness. But unfortunately, it didn't last very long; maybe a week or so. I tend to think, at least on her part, it was mostly due to relief. Once on hospice, she knew there would be no more trips to the ER, no more hospitalizations, no more being poked and prodded, no more being bed-bound while in the hospital, etc. She was so very tired; tired of being tired all the time, tired of the constant struggle to try and make things "better", when she knew there was no getting "better" - there was just trying to treat symptoms. With hospice on board, she could embrace being tired rather than fighting it all the time. She could start to let go.

Once her mini rally ended, she began to fail rapidly; she had numerous falls, even with me being right there, she often didn't remember which room she was in; she slept on and off most of the day, and then said she was awake most of the night, but I know she kept up the on and off sleeping 24 hours a day. I think because she always felt so tired, she convinced herself she didn't sleep much; but it wasn't unusual for her to fall asleep when I'd be in the middle of talking to her. The beauty of hospice was that she was encouraged to do whatever made her feel better; if she wanted to sit in her recliner all day and watch TV, then they encouraged her to do just that. There was no more gentle "chiding" from the medical people to do her exercises, do her therapy, watch her salt and water intake, etc. It was all about whatever made her the most comfortable, and blessedly the decisions were up to her. Hospice was able to give her a modicum of control back at the end of her life, and I think that's what she appreciated the most.
My only advice as you travel this road with mom is to try your best to go with the flow. The days that mom is feeling up to doing more, then (insofar as it's safe) encourage her to do it; on the days where she just isn't feeling like it, tell her it's perfectly ok. And please, be kind to yourself, too. You are going to have a lot of times where you start to second guess yourself, and trust me when I tell you that is nothing but an exercise in futility. You're handling things just as you should; supporting and loving mom during her time in hospice is the kindest thing you can do for her at this point in her life.

Peace and prayers to you and your family through this.
Helpful Answer (12)
Reply to notgoodenough
ptdurkan Jun 15, 2021
Thank you so much! This hits home about second guessing. I was with her 24/7 for 3 weeks when she got out of the hospital. Now that she's a bit better, I've been home more and letting her be a bit more independent. But it was hard to let go. It seems it will take some mental fortitude to know that it could be over tomorrow or it could be months. I prepared myself for tomorrow but am struggling with it going on for months. But I tell my friends and family that we are just taking it day be day.
No, you did not jump the gun. You have been told exactly the condition of the heart and you know it is a failing pump. This doesn't "get better" in the way that arthritis may occ. get "better". This is a heart that is very impaired. That will not change. And yes, of course you will keep hospice. More and more it is kept to "help" people.
What you are seeing is in fact quite common. It seldom lasts for any length of time. What happens is that with acceptance comes a lifting of anxiety. Anxiety is the huge foe for anything that brings breathing issues (COPD/CHF/etc.). So with the lifting of worries, with the administration of medications to prevent air hunger and anxiety, there is often this magical recovery period. Just enjoy it, try not to predict it and take things a day at a time.
I wish you all so much luck and am so happy you have hospice on board.
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Reply to AlvaDeer
ptdurkan Jun 15, 2021
Thank you
This is very common. One of my first home care patients was a woman with 'dying heart'. The day I met her, her heart was pumping so poorly, the lower half of her body was cold and blue. Over the next few days, she became bedbound. She had the most amazing circle of friends to care for her. She had been a dancer for years and told such wonderful stories. One visit it was clear that there was a strong possibility she would not last the night. As she had signed papers to die at home, I instructed the friends to call our agency at ANY hour and we would be out.

I got to work and expected to get the message that she had passed. No such call so I beat feet over to the home. I walked in, could hear voices, laughing from the bedroom. I walked in to find my patient out of bed teaching them Irish step dancing!!!!!

She did pass on shortly after. It was my first experience witnessing this. It is emotionally VERY difficult for family and friends. They prepare themselves for the impending death then rejoice with this 'rally and survival', only to have it dashed while feeling unprepared.

You did NOT jump the gun with Hospice. Embrace the good days, they are a precious gift to carry you through the coming dark ones.

Godspeed on the journey
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Reply to Waterspirit

You did the right thing getting hospice on board. Better sooner than later.

My mother's been on hospice for six months already, and several of her heart medications have been stopped for various reasons. She's still chugging along without them -- go figure.

You just never know how it's going to go, but that's why it's great to have hospice on board to answer your questions.
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Reply to MJ1929
notgoodenough Jun 14, 2021
(((hugs))) MJ!
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ptdurkan, I think that no matter how much we "prepare" it feels so sudden that our loved one died.

Enjoy the time that you have with her and know that she will go when it is her time and not a moment sooner.

My dad had an extra 8 years and it felt like it was so sudden when he passed. I know in my heart that he had an additional 8 years of life and it wasn't sudden in the least. I knew that he was living on borrowed time and that he was a very sick man, yet the shock of losing a parent makes it feel sudden. I wish that anyone could help us understand this but, I don't think that anyone can prepare us for the loss of a parent. It is not something we can comprehend until we have actually experienced it.

Remember to take care of you, eat nutritious foods, get plenty of rest and shed tears, if needed to relieve the stress of facing the death of your mom. You will be able to handle all of this so much better if you take care of you.

I am sorry that you are facing the loss of your mom. May God grant you grieving mercies and comfort during this difficult time.
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Reply to Isthisrealyreal

Quite often there is a "rally" before death.
Quite often people "improve" once Hospice is involved because of the extra attention they are getting. From the Weekly Nurse visit, the CNA that comes 2 times sometimes more a week.
Possibly a visit from the Social Worker, Chaplain. Added "company" that she can talk to.
And some of the stress and anxiety is removed.
Unless and until Hospice says..your mom has not declined so we have to discharge her from Hospice. And a discussion like that will not happen for about 60 or 90 days (can't recall time line but the Hospice can tell you)
Take advantage of the good days.
Take advantage of all that Hospice can give to your mom and the rest of the family.
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Reply to Grandma1954

I am going through this right now. My Dad, CHF and Alzheimer’s, was hospitalized twice with aspiration pneumonia after recently entering Memory Care. In the hospital with meds and 4 l of oxygen a day, and just when we arrived from across the country, he rallied. I have always had a very difficult and fraught relationship with my Dad. He was very high-powered, brilliant, and way beyond critical in the family. But, suddenly, at 94 years old, he had turned a corner and became funny and loving, and for the first time in my life, seemed truly happy to see me.

However, the doctors told me between his CHF, Alzheimer’s, and dysphagia, hospice was an option. I knew from his DNR what his wishes were, so decided to put him on hospice. Then a family member questioned my decision. Next there were two days where he didn’t wake up, then we walked in and he was up in the common area eating his lunch independently. Like a miracle. The next days he declined. That’s where we are now. A roller coster of emotions and questions. Really hard.

Having this thread pop up this morning has helped so much with everything. Thanks for posting and for all the helpful replies. Just what I needed to read this morning. Hugs to all.
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Reply to Marrey

Nope, you did not jump the gun. I went through similar issues with my mom.
Two years before she died, my mom had what was probably a TIA. She passed out. We took her to the hospital. She woke up and demanded to be taken home. She "shouldn't" be at the hospital. At that time, she didn't qualify for hospice, so she and I agreed that if she was unconscious and couldn't go to the doctor, we could take her to the hospital for a diagnosis.
A year and a half later, she had another episode. She woke up a few minutes before the ambulance got there and was hungry. Since I knew a trip to the hospital would mean a long time with no food (very detrimental to her), and that there wasn't anything they could do about a stroke that we weren't already doing, I sent the ambulance away and fed her. That episode did enough damage to qualify her for hospice, so I arranged it for her with her agreement.
They did not take her off any maintenance medicine, and I had the benefit of being able to call on a nurse who could contact a doctor, and we could get appropriate medical care without all the physical and mental stress of going to the hospital.
My mom was on hospice for 9 months. There was never any time when going to the hospital would have given her better care than she got at home. Even the hospice nurses commented on the big swings between her good times and bad times. I was packed and there to stay with her a couple of times, only to have her recover and get back almost to normal. Finally, she had a low that she couldn't recover from. I never regretted having her on hospice. It was the best care we could have given her.
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Reply to Cynthiasdaughtr

No. you absolutely did not jump the gun with hospice. My brother walked out of hospice the first time he was in a hospice house. He was able to be home for a few months before entering the hospice house again. That time he didn’t last very long. Hospice was absolutely wonderful to him and our family. He died peacefully.

My mom recently died in a hospice house. She was kept comfortable. We could have never cared for her on our own. She was completely bed bound with end stage Parkinson’s disease. She knew that she would never leave hospice and she was ready to be with my father and brother again. She lived a long life. She was 95.

Our family has no regrets using the hospice organization. They showed so much compassion for my mom. She loved her nurses and caregivers.

I wish you peace as you face these challenging times. I will keep you and your mom in my thoughts and prayers. Take care.
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Reply to NeedHelpWithMom

Hospice is also a type of care that tells you and first responders not to try to fix things, just make your mother comfortable. My mother (with advanced dementia) was miserable every time she went to the hospital after a fall. She didn't understand what was happening and bit the nurses. I have POA and decided "no more hospitalization and put that into her medical directives."
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Reply to NancyIS

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