I'm glad to be with so many who understand this!

My dad is in hospice care at home, and is 90. He is failing, but no AD. Mom is 89 with low-to-mid-range AD--a retired nurse and a real pill about not accepting help.

After Dad's most recent hospital stay, I got an aide for a day shift, 10-6 for 7 days. Now, the hospice nurse has a concern that Dad needs more than Mom can do with 8 hours a day of help. It has been such a trial getting Mom to accept 8 hours a day of help that I dread trying to get 24-hour care or a live-in aide.

You know the drill--Mom hangs up on the aide when she calls from the doorstep, locks the door so she can't come in, closes the curtains when she arrives so the aide can't see in. I get phone calls regularly demanding I fire the aides. (Of course, when I am there, everything is fine.) The bad stuff doesn't happen every day, but it happens enough that the wonderful, patient aide is getting upset.

My dad has prepared for this time in his life well, and he was absolutely explicit (and has all the legal paperwork to support it) that he wanted to be at home at the end.

Should I remove Mom to an ALF with memory support, so I can get Dad 24-hour care? Should I just grit my teeth and get the 24-hour care and warn the aides they have an uphill climb? Should I remove Dad to a NH? It is against their wishes to separate them, but it breaks my heart that Dad needs more than he is getting. Either of them living with my family is not an option, unfortunately.

The hospice nurse says Dad has no obvious signs of abuse or neglect, so the situation isn't dire...yet.

Your thoughts and suggestions would be much appreciated.

Ibis J.

Hello Ibis J, welcome to these message boards. Our names are similar--I hope people don't confuse us. I'm not a caregiver, I am a patient with lupus and a cognitive impairment.

The fact that your Mom is interfering with your Father's caregiving is a sign of neglect. Refusal to permit care or threatening to remove care is neglectful and abusive. Since your Mom has AD, her judgment is unreliable.

You have listed several options available to you. I don't think there is one best decision; you have to balance the needs and the resources available of everyone involved.

The people here are very experienced and will give you good advice. Please come back often and visit us in the chat room when you can.

Iris L.

Ibis
I'm so sorry about your situation, it's a rough one to be sure.
How would your Dad feel about being separated from his wife? If it would be hard on him, I'd just get 24/7 aides and be there as much as you could to smooth things over and help your Mom try to adjust.
Perhaps your Mom would do at least a little better with a different aide? Sometimes some personalities work a little better than others.

Is your mom on any psychiatric meds?

Often this fierce resistance to caregiving can be overcome with small doses of the right meds, and it won't zonk her out.

Can you get them both into a NH? Does your Mom have any medical conditions, heart issues, diabetes... that would qualify her for NH care? If you can find the right NH for them both, then they would be together. It sounds as though your dad needs the sort of supports that a NH can provide, as opposed to an ALF. Call around and see what the local facilities offer. It sounds as though your mom is headed toward NH care at some point anyway with her AD.

My mother was also very paranoid about people coming into their home, even though when I showed up, everything was fine. It's a familiar tune for a lot of us.

I placed both parents in the same NH at the same time. They ended up being seperated, as they both had dementia and were really getting on each other's nerves. They were able to spend a lot of time together, though, during the day.