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??
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.
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.
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.
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.
The purpose of hospice is to keep the patient comfortable, allow them to naturally come to the end of their life with dignity. My father was on hospice for about 6 mos. He was 91, suffering from mixed dementia and several heart issues. He never rallied but just declined further - he never seemed to remember that he was too weak to stand so fell constantly. 2 days before his death the hospice nurse called me to give me an update saying dad was doing well - still feisty and trying to climb out of his wheelchair. He just closed his eyes and died peacefully. I am so thankful for all the services hospice was able to provide dad.
About 18 mos before my mom's youngest brother died, my cousin contacted me to let me know my uncle's hear was failing and he wasn't expected to live much longer and death could come at any time. With only 20% of a working heart he lived for another 12 months.
I wish your and your family the blessings of peace, love and grace as you journey with your mother's end of life.
Thank you for the wishes and response.
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.
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.
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.
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.
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
So we will keep on until he decides he’s had enough. But meantime his short term memory is shot, he’s now using a walker part-time for balance, and he’s lost 46lbs in the past year. (It’s heartbreaking to hug him and feel his shoulder blades and every individual vertebrae.) But he says it’s better than dying, and I can’t disagree.
I know what you are going through. It’s tough. Remember to take some time for you. Easier said than done.
I just put my 97 yr old Dad in Hospice so he could be seen by Nurses and stay in his own home not going to a Hospital.
You can be in Hospice Care for 6 months to a year or even longer if a Dr says it's for you.
Prayers.
I put my mom on hospice in January after a traumatic two-week hospital stay. I decided we were done with hospitals and whatever she needed treated would be treated where she lived, not in some scary strange place she didn't recognize.
She didn't really eat anything except Ensure milkshakes for the majority of that time, and she was up in her wheelchair every day until the last three weeks. She had Covid during that time, too, and had twice weekly wound care as well (more often later).
Even with all that, she was absolutely a candidate for hospice. She lasted almost eight months, and didn't need any of the comfort care meds until the last week.
We focused on quality of life, and she decided on the quantity, and that's what hospice is all about.