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johnnyk Asked April 2018

Mom's been in memory care for 3 weeks. During visits she complains & asks to go home. The guilt is killing me. Should I keep visiting?

Mom, 77, was diagnosed 2 months ago with Lewy body dementia after slowly declining physically and cognitively over the last few years. She's had severe depression for more than 20 years and has been on antidepressants the entire time. She's had ECT therapy as well. She was living with my father, also 77, who still must work full time to support them - they took SS as early as they could and the payments are not enough to make ends meet. They live about 30 minutes from me. I started to help my dad with mom's appointments about 3 years ago - he was getting overwhelmed and asked for help. Over those three years it had progressed to the point where I was taking her to appts. 2-3 times a week and also having to go to the house numerous evenings to help take care of mom's physical needs. We had in-home care while dad was at work for the last 10 weeks before we moved her into a facility, but she never allowed them to assist her in any way. We basically paid them to watch TV and make sure mom didn't fall if she decided to come out of her bedroom. She would often lay in bed all day, soaked in her own urine, refusing to get up to be cleaned or to use the toilet. In the evening, she often wouldn't even let dad get her up - then I would get the call and have to drive over to convince her to get up so we could clean her and change the bedding. I also had to come over on the weekend to give her the one bath she would agree to each week. She would call me many times daily to complain about the "ladies" in her house, and to complain about how dad was treating her. She often expressed concern that dad was getting so angry with her that she thought he might kill her. One night she actually left the house in her pajamas, walked down the street until she bumped into a stranger, and asked them to call the police because she was afraid her husband was going to kill her. That was the first of 2 visits from the police, both of which resulted in an officer spending some time talking with mom to calm her down, and then telling us we should consider a different living arrangement for her. While all this was going on, I slowly watched my dad deteriorate physically and mentally from the stress of caring for mom. I finally hired a geriatric care management company to help me sort out the best plan of action. After the case worker spent a few weeks visiting with my mom, and meeting with me and my dad, they advised us that mom really needed to be moved to an AL facility, and most probably into MC. I discussed this with the entire family - Dad, mom's sister, my brother and my sister - and we all agreed it was the right decision. Mom had expressed some interest in moving out, especially on the days when she was fearful of dad, so I suggested we visit a few AL facilities near my house, which she agreed to. She liked one in particular, so I made the necessary arrangements (I'm her POA). She was assessed by the facility and they recommended placement in MC. When the day came to move her in, she decided she did not need to go and couldn't believe we were making her go. We told her it was for a 30 day trial (a lie), which seemed to take some of the fight out of her. We moved her in against her will, but without much incident. We love the facility and the people that are caring for her, we receive excellent feedback on her care and they respond quickly to any questions we may have. So all in all, it seems to have been the right choice. BUT - I've visited with her 3 times a week and, not surprisingly, all she does is complain about the staff, the food, the other residents, the activities (silly and stupid). I'm unable to divert the conversation to anything else. She wants to go home - she promises she'll be better and do what ever dad and I want her to. Or she wants to be moved out of the MC unit - she can't understand why she's there. I thought moving her into a facility would bring some relief, but I feel worse knowing she's lying in her bed feeling betrayed and abandoned all day, every day - while the rest of the family moves on with our lives. Should I continue to visit her? How have those of you that have placed loved ones in a facility dealt with the guilt that comes along with the placement? Did I do the right thing by moving her into the facility?

Eyerishlass Apr 2018
Yes, you did the right thing by moving her into a facility. She was unable to participate in her own care at home and your dad was killing himself trying to care for her himself. And you were taking her to appointments several times a week in addition to going over there every night to get her cleaned up.

You said that when she was at home all she did was lay in her own urine-soaked sheets, unwilling to get up out of bed everyday, and complain about the way your dad and the home health care workers treated her.

Now she's in MC laying in her bed everyday and complaining about the staff, the food, other residents, and the activities. Is it possible that your mom will likely complain about anything, regardless of the circumstances?

Which is worse for you? Your mom being at home with you and your dad providing all of her care or your mom being in memory care with the staff providing all of her care while you can just visit and not be responsible for taking care of her?

When a loved one goes into a facility the family is supposed to move on with their lives. That doesn't mean you don't care. And I don't think there's a person alive who has place their parent in a facility who didn't feel guilty, including me. I felt guilty every time I visited my dad. I loved my dad dearly but it hurt to see him in a nursing home and each time I left I felt such relief which made me feel worse. But he had medical issues that I couldn't tackle on my own when he lived with me. It became too much. I was breaking down in hysterics on a regular basis.

Yes, keep visiting her but you don't have to go everyday. Or even every other day. Go as often as you think you should. Coordinate with your dad if he's visiting her. Don't go on the same days and you don't have to stay all day long. Your life should not revolve around visiting your mom in the nursing home.

polarbear Apr 2018
She's where she should be. She was literally killing your father physically and mentally at home. Don't visit often or as long. It's better just her suffering from her disease than everyone else has to along with her.

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geewiz Apr 2018
Johnny, please continue to visit and divert conversations. One idea may be to visit during activities. That way, you are both distracted. Does she participate in them? Assuming you live close enough, can you make brief visits? 'Hi Mom, I have a doctor's appointment but wanted to stop in for a cup of tea with you. Let me tell you about the kids . . .' Alternatively, load some photos onto a tablet and show them to her. Whatever her favorite things is, kids, travel photos , old family pix. We did this with MIL and her time tolerance was about 10 photos. Don't even ask how she is doing! (You are getting that info from the staff). Can you bring a favorite food? I brought my Mom a strawberry sundae and she was so delighted --- at this point I wasn't worried about spoiling her appetite!
It IS the right choice, you can try different approaches to see what works with her. Between depression, LBD and new living arrangements there is a lot going on. One of the hardest things I noticed my sisters-in-law with their Mom was they kept thinking she could/should be part of every decision. Asking about things that they should have made the decision on. Good luck and keep us posted. Across this forum, (trust me) someone has faced the exact situation you may want to inquire about. And at least you get some new ideas.

jeannegibbs Apr 2018
You did the right thing moving into a place where there are three shifts of people to help her, and who understand her behavior.

Your mom was not happy at home and she is not happy where she is. Nothing has really changed there, has it? In that regard she is no worse off than she was.

I think I'd cut back some on the visits, but why not ask what the staff thinks? Do they have good experience with residents settling in when they have fewer visitors?

My heart goes out to your poor mom. She promises she'll do better, as if she is being punished. Assure her over and over that she needs help because she is sick, not because she is bad.

Three weeks is not enough time for most people to settle in. Give her more time.

Windyridge Apr 2018
Yes , you did the right thing. Don’t back off. As hard as it is she’s far better off. I had to put both my folks in care about 4 months ago. It was the hardest thing I’ve ever done but I had no choice.

I live 3 states away, only kid living, they refused any help and were not safe any longer.

Cut back on the visits. I stayed in the area for a couple weeks and visited each day for a while. I had to detach as my visits just reminded them of all things home.  I make the drive every few weeks now and call about once a week. 

I understand the instinct to be hands on and visit elders frequently.  Lots of guilt and all that.  In some cases it’s needed and helpful.  In my case it is not.

She will adjust. It takes a while.

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