Mom with Parkinson’s dementia LTC guilt

jkris

Hello. This is my first time posting. My Mom is in LTC. She’s been there 6 months after a fall. She guilts me and wants me to let her go home. She cried today because she doesn’t think she belongs there. Her bf is wanting her to go back home too, though he complained when she lived in the home about how difficult it was. She calls friends and relatives crying telling them how terrible I am. In turn they call me. She doesn’t believe she has any memory problems. How does a person respond to these types of situations. I am her DPOA and agree with her doctors that she needs this placement but the guilt is real and my anxiety is out of control!

H1235

Welcome. People with dementia often have anosognosia. This is an inability to recognize symptoms or limitations. It’s is so difficult! My mom doesn’t understand why she needs to be in the facility. Medication has helped a lot with the anger, but she can still be a bit snarky sometimes. I think in the middle stages it can be very difficult for family and friends to recognize symptoms. You have to really pay attention. There are so many things they probably struggle with that just go unnoticed. Even if mom was truly doing great, she wouldn’t be be without the routine and the controlled environment . People with dementia also have the ability to showtime for short visits. They somehow make it appear that they are doing much better than they really are. As DPOA you know what’s going on. Family and bf don’t have all the information. Some just have their head in the sand. My moms best friend told me I should be ashamed of what I’m doing to mom and that my dad (passed away 11 years ago) would be disappointed in me for the way I’m treating her. It hurts, but I know she knows nothing, has talked to no doctors, knows nothing about moms finances. Hold strong you are doing the right thing. I would suggest you talk with her doctor about medication (or an increase) to help with her anger, depression, anxiety. I would block their phone numbers from you phone. You don’t need to listen to that. You might also want to talk with your doctor about something for anxiety. It took me a long time to admit I needed medication. I’m glad you found our group.

Anosognosia and Dementia - AgingCare.com.pdf

SDianeL

welcome. Sorry about your Mom. You have nothing to feel guilty about. You aren’t doing it to her, you are doing it FOR her. Dementia did it to her. As DPOA you make the decision. If friends and family want to know more have them read the book “The 36 Hour Day” some may, many won’t. At least her bf might read it if you gift it to him. Also show him the DBAT questionnaire completed and discuss long term care with him.

jkris

https://alzconnected.org/discussion/comment/268267#Comment_268267

Thank you for the validation her routine now is helping her. The anosognosia your are talking about sounds like what is going on. Her psych nurse mentioned that she doesn’t have the capacity to understand what’s going on with her health and now I have a word to research. Thank you for the pdf. Having Parkinson’s along with the dementia is trying because if she has a good day she forgets those are not her norm. She is taking anxiety meds and I am on them as well. It’s just so frustrating that a few others refuse to see what’s happening and I allow that to stress me. I know I shouldn’t let me dictate my thoughts. It’s nice finding a community that understands what I’m going through. I’m sorry you have had to deal with this as well.

jkris

Thank you for the book suggestion, i appreciate it. I will get a copy and suggest it to those who refuse to see what’s happening. The DPAT suggestion is great as well. I have tried to speak with her bf with the facility social worker and he still refuses to see what’s happening. Thank you for responding.

pamu

I feel for you, the guilt is real! I wouldn't second guess yourself since the doctors agree, regardless of what her BF and friends say. My mom (87YO) has been in MC for 6 months and hates it. She begs and cries to leave…but she needs to be there. Every visit is a potential nightmare and I have to mentally prepare myself (my sister does too). I know in my heart she needs to be there so I give myself a little pep talk before our visits knowing that it may/will be unpleasant. I try to detach myself emotionally so I can remain calm and not react negatively if she's having a difficult day. It's hard to do! Unlike you, we do not have anyone who is objecting to her being there. Even with that I am stressed out, I can only imagine how you feel when you're being questioned about your decision. Since her BF is not in agreement and you've tried to talk it out I would now limit my conversations with him. It's not helpful. You've tried but at some point you have to manage her care how you see fit, regardless of other opinions. Stay strong!

jkris

https://alzconnected.org/discussion/comment/268303#Comment_268303

Thank you! I am an only child so she directs all her negativity towards me. It’s comforting knowing I am not the only one who feels this way. I never thought I’d be placing a parent in a facility. I have ceased communicating with her bf, it wasn’t beneficial and he ignored when her medical staff explained her condition. It was affecting my sleep as it almost felt like he was competing. He wants to win the debate only there is no debate. Thank you for your advice I appreciate it!