How to cope with feelings of despair? I tried to move my dad to a facility and he doesn’t have one on one care anymore.

I’m sorry for your overwhelming thoughts. It’s hard to see someone we love decline and not be able to advocate for themselves. This happened during my mother’s nursing home years. She lost speech a following huge stroke damage and couldn’t speak for herself. She didn’t lose bladder control, but had to use adult diapers since she couldn’t call for help and was a two person assist for every move. That was a hard pill to swallow, but there are certain realities in managed care. As long as there isn’t skin breakdown, bedsores, he’s okay. My mom never had any in four years. Your dad sadly has hospice care now, meaning his decline is continuing and further losses of ability are ahead. Give yourself the gift of acceptance, you don’t control and can’t fix any of this. Dad is there enough to well know your love and care, show the staff he’s a person who’s valued, it truly helps. The serenity prayer is a big help, even without faith to back it up. I wish you and dad much peace

I’m sorry for your dad’s long struggle with his illness.
Your feelings are tormenting you.

I can see that but not without your having logical reasoning. He is wet now on a semi regular basis. He was not that way when you were in charge of his care. Your common sense is at play here not a mental failing on your part. Something is different.

But do take into consideration that in this new decline things may change more often and sooner than before. Do gently remind yourself, all the reasons you couldn't manage his care on your own before, are still there plus more.

Since you have noticed these incidents since he has been placed on hospice, I would speak with the DON and ask about the staff protocol for hospice patients. This may have nothing to do with it and it is doubtful anything will be admitted to you but it might encourage the DON to check on his care more often. When I was in a similar situation I found that the regular staff sometimes feel that it is okay to “skip” the patients care in anticipation of the hospice aide taking care of it. It can sometimes happen that instead of the patient getting more care by having hospice staff coming in, they end up with less care. Not because of hospice but because the regular staff is waiting to see if hospice takes care of the patient. They are mostly all overworked and not trying to shirk responsibilities so much as wishful thinking.

Another thing to check is whether there are new employees who might have brought those type habits with them from previous employment…Hospice patients have their own care, I can skip this time …this type mindset can creep in.

Dad shouldn’t have to ask, even if he could. He just needs to be changed more often. Ask the DON if they have taken him off meds or put him on meds that have changed how often he needs changing. Wonder aloud if he needs to go back to palliative care if this new care plan has anything to do with him being found wet. Expect them to reassure you that they will check into things.

There is usually a chaplain (emotional support person) who is part of hospice . They are for the patient and the patients family. Perhaps make an appointment with them to visit and see if this person could be helpful for your Emotional support. Also share with the hospice team what you are seeing so they can let you know if they are having a similar experience.

The idea of hospice can be having an effect on you and causing you to doubt your decisions for his care. It sounds to me your care has been exemplary but our minds will search out every perceived failing we have and make us decide it must be our fault. Try to look at the larger picture. Dad is not bothered by this change. You are. Both are important to note. Try taking a walk before or after your visits in a calm setting. Perhaps there is a park nearby. Recognize that this is a transition period for both of you.

Some people say they are offended by others telling them to take care of themselves. But truly, you are the only person who can take care of you. You have to make the decision that your self care needs tweaking. Focus on today and not what is beyond your capability to change…anything in the past.

Today you can bring dad your calm loving face and spirit. You may need a little deep breathing, a little calming activity to prep for that visit.

Utilize what’s at hand and simply let your DON know you are trusting her to help you make sure dad is changed more often not that you need to castigate yourself for being human and needing help in caring for one you love so much.

It's totally normal and understandable to have those thoughts. When it comes to our LOs, we tend to "project" what we think they may be experiencing. You need to recognize that you are "horrible-izing" his situation. Some of us on this forum are old enough to remember the days before disposable baby diapers. Did frazzled Moms change their kid's wet diapers immediately all the time? Nope -- and it was ok. As was pointed out by others: as long as his skin is healthy, he's fine. "He doesn’t seem to be as bothered by it..." And he wouldn't want you to be torturing yourself with those fretful thoughts and feelings, either. As a parent to 3 sons, I wouldn't want them feeling this way on my behalf.

You've done yeoman's work on his behalf all those years. Be kind to yourself and catch up on your pampering. May you receive peace in your heart.

You can think of it like daycare for toddlers. I worked at a daycare, and we checked diapers religiously all day long. Of course as soon as you are packing the kids' bags to leave suddenly there will be a kid that wets his diaper leaving the parents to think he has been sitting in that for a while, when really we had just checked him minutes before and he was dry. It's hard to deal with the guilt, but honestly if the place your dad is in really seems like a good place, you should put away the guilt. Patients are going to soak through clothes and there is nothing staff can do if you walk in five minutes later. I've found my mom soaked on a couple occasions and even though she was perfectly able to ring the bell or even change her own brief she refused. She wanted to have complete control over her own toileting, even if it meant sitting there wet during our visit. Thankfully I've noticed mom now will head to the bathroom before my visit so we don't even have to discuss it.

If you get no help from the caregivers at his facility, speak to the facility's ombudsman, who is there to listen to complaints and concerns about the care offered there.

Good luck in getting dad the care he needs.