Trying to cope with the decision of accepting hospice care?

As you can see by our positive thoughts on using hospice, I think that you will be pleased with them. It’s taking you some time to process what is happening. It’s never easy. We are never fully prepared when going through heartache.

My brother has glioblastoma so I decided treatment would be more detrimental than entering hospice. It was one of the hardest decisions I’ve ever had to make. There’s a real finality to it. My niece and I are POA for her dad so she signed the paperwork for hospice while I was on speakerphone. Later we both admitted that signing the DNR (Do Not Resuscitate) form brought us both to tears. My goal has always been for him to be comfortable. But I’ve cried a lot, seeing this 65 year old musician lose his personality, memory, impulse control and unable to make decisions. He has aphasia so he isn’t always able to make his wishes known. Oddly enough though, he has improved since he arrived at a much better facility and has excellent hospice care. He can walk and responds to music. I know it won’t last but we’re grateful.

You have essentially been in emergency mode, and now that you don’t have to attend to every need the grief is coming out. This is totally normal. It’s horribly uncomfortable but it’s normal. Don’t fight or judge the tears.

Look at this way, you could always remove him from Hospice, and you can always hire a different Hospice Agency, if things do not work out.

Know that the eventual outcome with hospice is exactly the same without hospice. It's just that with hospice, the focus is on quality of life. He'll no longer be dragged off to the doctor's office for appointments, or go to the hospital unless you want him to. (You simply take him off hospice during his stay, then put him back on after he gets out.)

Hospice does not "kill" anyone, they don't discontinue medications until you decide that's necessary. They treat things that cause pain, even if it comes up after you've started hospice.

My mother has been on hospice for almost eight months. She has congestive heart failure, vascular dementia (which she's had for seven years), macular degeneration, and severe edema in her legs. About three months ago she developed terrible gout in her hands and elbows from drinking nothing but Ensure for three meals a day, and we treated it with medication and new low-sugar milkshakes. We didn't ignore it or the awful pain it caused; we treated it. It just didn't involve going to the hospital, thank goodness.

We finally discontinued her medications about two weeks ago, because it was clear she was no longer metabolizing them and they weren't doing anything. I just came back from seeing her, and her edema is completely gone after two weeks with NO diuretics. Go figure.

She's winding down now and could go any day now. She's completely comfortable, the hospice nurse now comes every day and I meet her at the nursing home so we can care for her together. It will be a peaceful end, and isn't that what we all want?

Hospice is for the family, not just the patient. Talk to their social worker and see what services are available for you and your kids. I know they'll have a chaplain who will happily stay in touch and help you, and they may have other services. They'll stay in touch with you for a year after your husband's passing, so you won't be going through it alone.

Good luck, and you will make it through this.

Hospice is not about giving up. It is about wringing every last drop of life from the time you still have together.

They'll supply the right equipment to get him out of that bed and back into the family room, for a start.

Call and talk to your providers tomorrow.

I’m so sorry you’re going through this. Please don’t think of hospice as giving up or the end. My dad chose hospice for himself after his body was completely exhausted and he’d had enough. Though it was hard to accept, it was also a great blessing. He was safe, comfortable, and well cared for. It’s all any of us could want. Big life changes are inevitable and accepting them is a gift you give yourself. I wish you both peace

Hospice was one of the best choices I made for my Husband.
I got all the supplies I needed to keep him as healthy as possible.
I got all the equipment that I needed to keep him as safe as possible.
I got all the support that I needed to keep me "sane" and able to care for him safely.
I got a Nurse that came weekly to check on him as well as order the medications that he needed.
I got a CNA that came several times a week, then as he declined another came to help.
The CNAs and the Nurse always treated him with respect, talked to him even though he would not reply, he often smiled.
I got a Social Worker, a Chaplain and others if I wished.
I also was able to request a Volunteer that would come and sit with him if I needed to get out.
I did not take advantage of it but I would have been able to place him in Respite.
All covered by Medicare.
What items I could not get through Hospice I could get through the VA and Hospice worked closely with the VA to get those items.
My Husband was on Hospice for almost 3 years!

Welcome Hospice, their goal is the same as yours. To keep him as pain free as possible. To be able to help you through a very difficult time. To educate you and support you as much as possible.
((hugs))

By the way if you have not yet chosen a Hospice there are 2 types.
FOR profit
NOT for profit.
The one I chose was/is a NOT for profit.
I think it does make a difference.
But interview them just like you would interview any medical professional.
They have reviews on line, they have FB pages. Check them out.

I am so sorry.

Hospice is not about giving up. You have been a wonderful spouse; you have honored your vows to your husband and your marriage. You have fought to keep him home, safe and comfortably. Adding hospice is about helping to continue with that goal - because, unfortunately, nature is a b***h, and you have come to a fork in the road. You can continue with no help, or you can add the services of hospice. Your cares have become too much for you to handle on your own, and you are seeking help and that does not make you a failure.

Many people call on hospice for assistance. Some people have wonderful experiences with it (we did) and some people have terrible experiences with it. But the one thing we all have in common is the grief at the knowledge that as much as we might wish it, no matter how diligent and loving we are taking care of the people we love, their journey is going to end, sooner or later. We chose hospice to make the last weeks easier and more peaceful for everyone. I expected hospice to make things easier for my mom; I was humbled and grateful that they worked so hard to make it easier for ALL of us.

Call in hospice and talk to them. If you don't like what you're hearing, you are under no obligation to engage their services. if you agree to their services, you will still be your husband's primary caregiver; but you will have a team of people for added support.

If you are concerned with what happens at the end, ask them. Ask them, specifically, about medications at the end. There are many people who feel that hospice gives too much medication at the end, thereby "killing" their loved ones with an overdose. If that is a concern of yours, also ask your husband's doctor what will happen if your husband is in the hospital at the end - what sort of medication he will receive, how much and how often. If you make your decision from a place of knowledge rather than desperation, it will be easier to accept once you come out on the other side.

You and your family will be in my prayers. (((hugs)))

So sorry that your husband is failing. Hospice is always a good end of life plan when someone has a lot of issues and no hope of recovering. I see it as a shift from trying to do a lot of things to fix the unfixable and instead keeping the person comfortable. I think it is a very reasonable and often necessary thing to do. It may take you a little time to come to terms with accepting that your husband, unfortunately, is not likely to improve. Hopefully you get enough help and he get enough relief for all his symptoms. I guess you can try to enjoy the small moments that you can share and take solace in the fact that he is being well taken care of and not suffering.

Please be at peace with your decision. My mom died this past April with dignity, without pain, in an end of life hospice house.

The compassionate care given to my mother was remarkable. I will forever be grateful to the entire staff. She was 95. She had Parkinson’s disease and slight dementia.

I miss her terribly but I am glad that she isn’t suffering and is reunited with my father in the afterlife.