My husband has vascular dementia, incontenance both ways, Foley catheter, and other health issues. Has had numerous UTI’s 2x with sepsis, that have taken significant decline with each episode. This last recent hospitalization he now is in a hospital bed unable to stand to transfer to a wheelchair. His loss of muscular mass is now evident. It is heartbreaking to see him in bed 24/7 not sit with him in our family room where we watch his favorite movies, music, activity of my daily chores, talking, dozing, asking him questions. His declines is mostly physical, he eats well, he knows us, his surroundings and many of his favorite tv shows, although he doesn’t comprehend everything, his thinking skills are not good. His attitude is good, never complains, anyone who calls he tells them he’s having a good day. Thank God, but for the first time the other day, he seemed troubled and I asked him what was wrong, he didn’t seem to want to answer but finally said, this is not good, I need some good news, improvement. It broke my heart. It’s so cruel, the hyper, trivia buff, phys Ed teacher, coach, athlete. I just tried to assure him we’d try to get him up out of bed, but I can’t and my son tried, it was so scary, he is dead weight I thought they both would go down. It lasted an hour in the wheelchair and by the time we got him back in bed he’d had a bowel accident.
I am now able to get hospice for him and as much as I know I need the help and know he’s not going to get better, I’m having a difficult time accepting this decision, crying at a drop of the hat because I’m now faced with the outcome. I’m not ready to lose him, give up on him, I’ve cared and worked so hard these past couple of years to do everything I can to fight this but I’m feeling I can’t fight for him any longer and it is God’s will. Help me Lord💧
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.
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.
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.
It was helpful that the Hospice nurse and the aide came to the house and that there was some supervision and support concerning my husband's care. My husband would sometimes talk about "getting his strength back up" so he could do something more ambitious, but, of course he was never going to "get his strength back up." One day when the Hospice nurse asked him " how he was, " he said, "I'm a dying man." She paused and then said, " Today? " And dying was definitely not imminent that day, so that reminded us both that my husband was still there and was still able to engage with the world to whatever degree his energy permitted.
That response from the nurse was one of my favorite moments during Hospice supervision.
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)))
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.
Two very dear friends both with cancer diagnoses that were deteriorating did not want Hospice as both said, "I'm not ready to die". I replied, to both knowing their spirits, that if the disease could be beat, they would. My suggestion was that it would be better to have a team that they trusted now while they didn't need them except maybe every week or two, then to bring strangers in during a crisis.
I asked them to do one favor for me. "please invite Hospice to come JUST to tell you about what they do, what they offer." Both did and both signed up that day. What made a difference for both was the philosophy that Hospice embraces life and supported their decisions.
They will support you, confirming you do not need to be strong or not be sad or angry or that you are giving up on him or that your faith isn't strong enough. Your feelings are what they are and not to be judged. They will be a stew in a huge pot overflowing. You never know which will pop out of the pot at any given time!
As I asked of the two dearest friends I've ever had, I ask of you: "please just call Hospice to come for an evaluation to hear what they are about and can offer in this most difficult time for all. If it is not the right time or decision, that's ok. It may be at a later time".
Godspeed on the journey however and whenever it takes you all.
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.
I could leave the house knowing that he would be safe and cared for while I was not there. I could not have made it through the final months without the nurse, aides, and chaplain.
See All Answers