Need a "buddy"

I’m in a not quite parallel life with my DW. I have no experience in DH incontinence. We’re about 5-early 6 on DBAT.
We tried getting up during the night to toilet but it didn’t work because DW wouldn’t go back to bed. Horrible nights. Also getting up early was a crap shoot. Could sleep 10 hours and be dry or 6 and be soaking wet or worse. I decided to deal with the known devil. Sleep through the night if DW allows and deal with the fallout in the morning. Have to watch for skin issues etc. Use over night pads and protective mattress pads and do laundry for urine most of the time.

There is someone out here like you, doing everything we can and still feeling defeated and exhausted. All of us together. This is a great site for advice and a place to vent. I think you will find a lot of buddies here.

I might be parallel enough to your situation. I’m 69 and caring for my DH who is 79. Stage wise he is late 6, early 7. I am his caregiver at home and have had Hospice services for almost two years now. My DH has been urinary incontinent since this past December and sometimes is with bowel. I have just occasional in home caregivers to give me a break. The last week or so has been tough, as my DH has been more uncooperative and has been aggressive when needing changed in the middle of the night. During the day when he is resistant, I can usually give him fifteen minutes or more and then try again and most of the time that works. Night time is different, as he is usually up because of soiled adult diaper and clothes and it has to be addressed right away to avoid a much bigger mess. With Hospice help we have increase his medications and it has started to help. But yes this past week I have felt really defeated and stressed to the point where I physically felt it. Yesterday (Saturday) I had a caregiver come and I had an afternoon of shopping with my daughter. That helped me a great deal. So I am checking on having more in-home care to give me a break as it’s been a few weeks since I have had any time for me and hope the additional medication continues to help. I have tried to educate myself by reading all the posts on this site and videos online to be the best caregiver I can be. Of course I’m not perfect and feel bad when I don’t handle things the way I know I should. But the good does far out weigh the bad, so all in all, I feel I am okay to continue to be his caregiver. Please don’t be so hard on yourself. No one is perfect being a caregiver for someone with dementia. We all have moments or days when we feel defeated. If you haven’t already, you might want to contact Hospice for an evaluation. It’s great to have their help and resources.

I totally agree that the resistance to changing their soiled clothes is the worst. I was in the verge of looking into placing him as he actually hit me. The only thing that has helped with the resistance for my DH is medication. It definitely helps take the really nasty off. He is still resistant but if I take it really slow I can get him to allow me to change him without taking a swing at me.

My DH medication is Seroquel. It’s really the only one that has worked for him. Started him on this med about three years ago and have had to increase it over time to where we are on the maximum (800 mg) now. This past week we also added 30 mg of Mirtazapine. These meds did tamp down the aggression and hopefully will not need any additional for quite some time. 🤞🏻

I do know the tone of voice and how I talk with him makes a difference. If I say it in a light hearted way and kinda chuckle, even when it’s not called for, he reacts better. Like I mentioned before, much easier to do this during the day and not in the middle of the night when we are all tired. Middle of the night is definitely the hardest. I can’t really give you any great tips, as it’s when I fail the most. I just use the best adult diapers I can (I use Northshore) and hopefully don’t have to change him during the night. Again the additional medication are helping with him staying in bed. He does wake up and usually seems disoriented, but it’s much easier to talk him into laying back down since we increase the meds again.

ask for evaluation from a different hospice organization. It's my understanding that they will approve if your LO has a terminal illness like dementia.