Being around family seems to make my grandmother's symptoms worse??

concerned_gdaughter

My 93 year old grandmother with dementia recently broke her hip and underwent surgery. The recovery process has been excruciating for all of us involved, as her dementia and cognitive impairment has made it so she does not understand what happened, where she is, or what she needs to do to get better. 

I (25f, granddaughter) came to visit my grandmother and uncle (her son, 70 years old, lives down the street from her and has POA) before the accident happened, just to provide some emotional support and companionship to my grandma. About two weeks ago she had the accident, and a lack of organization/coordination for her care meant that I and my older sister (28f) have ended up taking on a lot of the responsibilities for her direct caregiving. This has gotten better in the last few days since we have finally gotten more consistent caregivers scheduled for her.

The issue is, when I'm with my grandmother or my sister is, my grandmother seems to become so much more agitated and aggressive. Even if she is not in an aggressive mood, our presence seems to shift her behavior and almost upset her further, even though she begs us not to leave her alone.

Has anyone ever experienced something like this? I figured that me being here with her through recovery (or potentially her end-of-life journey) would give her some comfort, but no matter how calming I try to be for her, my grandmother remains more upset and has heightened negative behaviors when her family is around. We have to either pretend to leave her house or actually leave to get her to calm down.

Any similar experiences or thoughts around this would be much appreciated.

star26

There are a number of possibilities that could be contributing to your grandmother’s agitation: the dementia itself, her CKD, pain, a new caregiving situation, caregivers that might be unintentionally causing the agitation or inexperienced in knowing how to diffuse it, a preference for professional aides instead of family performing personal care, plus other possibilities. To clarify: Your grandmother is not agitated when non-related caregivers are in her home caring for her? A paid caregiver can perform the same tasks and your grandmother remains calm? Is someone with her in her home during all the time that you and your sister are not there?

star26

I just wanted to add another thought: if you have not contacted hospice already, it may be helpful to do so. I think she would probably qualify for their services now and they can be very helpful and supportive. You can call all the hospice agencies in her area and they will assess her and tell you all they can offer. If she qualifies, you can choose the company you like the most. If she doesn’t qualify now (which would surprise me), you’ve made some good contacts that you can call in the future. There is a long list of ways hospice can help you and your grandmother. I think it’s worth checking out.

concerned_gdaughter

Thanks for your reply. To clarify, she is still upset when the professional caregivers are there, but the best way to describe it is that she is more so on "autopilot" when her family is not there (or when she doesn't know that we are in the house) and it's just the non-related caregivers. She is asking mostly the same questions ("why is this happening, why are you killing me?") but it almost seems that it's because she doesn't know what else to say. 

And in contrast, when she is aware that her family is around, the questions are mostly the same but her demeanor totally changes. She becomes really agitated, aggressive, and irate towards us, and its clear that her anxiety level increases a lot. A lot of what she says in these times revolves around being angry at us for what is happening, but also begging us not to leave her or saying that we are terrible if we do leave her. And then once we leave or go into a different room, she seems to come down from those heightened emotions and is more at a base level of just being generally upset but mostly calm.

There are non-related caregivers with her in her home at all times and I feel confident that they are caring for her appropriately. I am just unsure about what to do personally - should I stop trying to visit her for the time being, since it only seems to upset her further?

BassetHoundAnn

Your grandmother is becoming agitated and upset when you and/or your sister are with her because you are the two people she loves and trusts the most. I was warned about this phenomenon after my 94-year-old mom took a serious fall that resulted in her being hospitalized and I ultimately had to move her to my house and then to an AL residence. Her behavior toward me was hurtful and harrowing, especially since I was trying so hard to keep her happy and safe. Eventually she calmed down, but for many long months when life gave her lemons I was the one on whom she took out all her anger, fatigue and frustrations. With everyone else she was sweetness and light. I hated to be alone with her. The worst times were late in the afternoon or early evening when she was starting to tire and to sundown. That's when she would grow the most agitated and angry toward me. "She acts this way toward you because you're her primary caregiver and she feels she can let it all hang out with you," people kept telling me. And "They always act badly toward the people they love the most." Small consolation. When she started to act badly I would tell her that I was leaving and would return when she calmed down. That usually settled her down pretty quickly because she didn't want to be left alone. 

I'm afraid I have no other words of wisdom to offer. Maybe others will chime in. Your grandmother is extremely lucky to have you and your sister. I'm sure she knows that very well, but her dementia is robbing her of the social skills to express her love adequately and keep the demons from breaking out of her brain when her loved ones are around. 

star26

Thank you for the clarification. I get it now and I totally agree with BassetHoundAnn. The close family members are the punching bags. I experienced this with my Dad and I also had to leave the room or pretend to leave entirely. Once when I left, I heard the nurse asking him "Why are you so mean to your daughter?". It was particularly bad when he was in the hospital after having anesthesia. I'm sure it varies with the type of anesthesia and details, but when I mentioned this to a doctor he told me that the increased aggression etc was due to the anesthetics he was given and it can last for weeks. If your grandmother is being taken care of by others, I agree with your thinking about limiting your visits if she's having a bad day or you seem to be a consistent trigger for increased agitation. Others have had to do that with their loved ones. Sometimes it's only temporary. As Ann said, your grandmother is very lucky to have you and your sister.

Mint

My mom becomes  aggressive with everyone but as someone said with family even worse.