Hope and hospice

Buggytoo

My husband started on hospice a month ago. I find it has heightened my hope that the end will be here soon. Sadly, a side effect is I am getting exhausted from the waiting. I visit every day and don't feel like I can really separate sufficiently to do something like take a weekend away. I don't feel my presence is that crucial as he is usually asleep or having hallucinations or talking gibberish and making hand motions like he is sewing or gathering things. The nurse has said he may be dead in as little as six weeks. Can I take a weekend away? Can I go on an annual getaway with a friend for four nights? Will the guilt be excruciating?

jfkoc

While I would be anxious leaving town I would certainly feel OK not visiting every day. My husband went from his lungs clearing up to dead in less than15 hours.

SDianeL

my husband aspirated and passed from pneumonia 2 days later. Only you can answer the question about guilt. I think I would visit less. Hospice will call if anything changes. The nurse told me to constantly talk to my husband or play music for him. Although he can’t communicate he can hear you. So sorry you are at this point. May he have a peaceful passing 💜

Carl46

Buggytoo, you cared for your husband long after most of us would have thrown in the towel. I honestly don't know how you did it; I certainly could not have done what you did. You have nothing whatsoever to feel guilt about and you will have nothing to feel guilt about if he passes while you are out of town. I think you should reduce the frequency of your visits. If you want to go on a 4-day holiday, go.

Quilting brings calm

I would go if the 4 day event is soon. Drive yourself so you can come back if needed. Hospice nurses have a good idea of how long. Not to the hour of course, but if they think six weeks, it’s not likely to be this week. You will be needed close to the end of six weeks, so take a little time for yourself now.

Vitruvius

Of course he may go quickly, but it is common for PWD to stop eating at the end, and after that they often then last for 7-10 days. This has been the case for about half the patients in my DW’s MCF. If you are away when they inform you that he has stopped eating then you likely have time to get back in time to comfort him at the end. I say take the trip and try not to feel guilty.

I am going through a similar state, as I have been informed by both hospice and my DW’s MCF that my DW’s time is growing very short and they think it could be less than a few months. It is awful and guilt inducing to want the end to come and their suffering to be over. My DW has been in Stage 7f for months and I have not seen her with her eyes open for an even longer time. I suspect that guilt and grief will be tempered by relief and the knowledge that her misery and a life with virtually no consciousness will be over.

BPS

Guilt has been a big part of my feelings over the past year, I know it doesn't make any sense. There is nothing to feel guilty over. We are all doing the best we can in the situation we are in and should not feel guilty. I think it would be a show of strength to be able to go away for a couple of days. You can't really do anything staying home so use your strength and take control of your life and go away. Yes, something could happen while you are gone, but even if it does that doesn't change all that you have done, all the care you have provided.

Buggytoo

Thank you all for your thoughtful responses. I have decided that if my husband isn't "actively dying" that I'm going to take the four day trip and have my own car so I can head home if the situation merits. It would be good for me to experience some respite to nourish me for the next leg of the journey.

harshedbuzz

@Buggytoo

Another point no one mentioned is that some dying people seemingly "choose" who will be present when they pass. Sometimes they survive until a LO can make it bedside while others wait until those closest take a break to grab a shower and something to eat or even run to the bathroom.

My aunt wanted to die at home. Her son set up her home to make that possible, arranged hospice and got her as far as the foyer where she passed. My BIL sat a 24/7 vigil with his mom for days, it was only when his wife chased him home for a nap and some food that she left us. He'd just pulled out of the parking lot. A similar thing happened with my friend's dad.

HB

Arrowhead

DO NOT FEEL GUILTY. You've done all you can for him, now do all you can for you.

a083129

DO NOT FEEL GUILTY. I understand where you are, exhausted. You need to take some "you" time. You have done all that you can. I am going through this journey with my ex-husband right now. This is not the life he would have ever wanted, if he knew about this going on with him in his right mind. I am his best friend, and I still love him deeply, but I hate witnessing all the struggles he is going through because his brain is slowly dying. I am praying that he can pass sooner rather than later so that his spirit can be set free and he can become truly alive again, more than we are in this earth. I personally refuse to feel guilty because I am literally waiting on him hand and foot. I know I am doing all that I can for him. Do I feel guilty because I wish and pray he can pass? NO, because I know that he wanted to be active all his life. Not the state he is in now: confused, sometimes agitated, unable to do much for himself on his own. He is completely dependent upon me. I sense you have been doing the same for your loved one. So, DO NOT feel guilty. You have done your best and he knows you have. May you have peace and comfort. I will be thinking of you.