She has breast and lung cancer at the same time and a tumor in her breast burst so she has an open would that she has to clean every day. I recently had to put her in assisted living and she is not adjusting very well. The first round of chemo worked great and all cancers were decreased and and one didn't show up at all. The wound even got better. The side effects and strong chemo is what took it's toll on her body. She has had to stop chemo to try and build her strength back up. She got so weak that she has lost the ability to walk or hold herself up so she must have 24/7 care.
I don't know how to help her any more and I am physically and mentally not so good. She resents me telling her what to do but I feel like I don't have a choice because if someone doesn't she will just sit in her recliner 24/7. The PT and occupational therapist say that she still can regain the use of her legs. My heart emotionally breaks for her but I get angry and frustrated because she still has a chance to live a better quality of life if she wants to. She offers no help to the caregivers. If I ask why she didn't eat, she says they forgot my fork instead of asking them to get her a fork. If I ask her why she didn't clean her wound, she says because they didn't put me in front of the mirror. Same excuse about everything that the doctor told her to do.
She told me that I'm not in control of her and she's right. Why is it so wrong of me to make sure she does what she is supposed to do? I only do it because I love her so much. They called me at the assisted living facility this morning to tell me that she was acting childish and wouldn't talk to them and wasn't sure if something was really wrong or not. Of course, I went running right up there to check on her. I got upset with her and called her selfish and I feel really bad and guilty. Every one tells me that I have to have my own life and stop trying to control the situation and they are right. The doctor and caregivers tell me that I need to push her and then when I do she resents me and accuses me of trying to control her. When I ask her if I didn't push her to put forth an effort when she can would she do it on her own, she says probably not. I guess a part of me is angry that she wouldn't put in the effort and lost the use of her legs. She gets mad if any one asks her to leave her room. I notice a huge difference with her mind when she isolates herself for days. She is totally confused about everything. Am I expecting too much and should I just stop worrying about whether she ate, cleaned her wound, etc...??? I can't go on like this. I feel like everything I try to do to help is wrong.
My mom was not compliant with any of the recommendations to take walks, do PT, get exercise, and socialize. I really hated the role of the nag, it made our visits miserable. I finally decided, she gets to live how she wants. As long as she's treated for depression and the staff are doing what they're supposed to do, I'm just going to try to enjoy our relationship rather than nag her constantly. She enjoys our visits, they brighten her day, so I decided that's my job. The staff have their job, docs have theirs, and her job is to live her life as she prefers it.
If it means her life is shorter because she's not doing what the docs tell her, I figure that's okay. She's lived nine decades on this earth and it would be awful for her to spend the rest of her days being pestered and nagged and forced to exercise when she doesn't want to, etc.
It's given me great peace of mind.
The cancers are horrible things she's dealing with and you are dealing with horrible stuff, too. It's true she can't be forced, only encouraged by you and her carers, to get up and do what she can to recover what she can. It's really better she's in AL.
Except for potty stops, my mom sat nearly motionless in a recliner for years and none of us kids could convince her to even sleep in a bed. She developed a buttocks pressure point and when she became weaker at home at 87, Eldest Brother and SIL took her to ER since they lived with her briefly prior to their new home being ready. APS stepped in at the hospital and said it was elder abuse that she developed her sore and forbade returning to her home. She wanted to return home after 3 months and she never returned, passing at 90 in a SNF where she received excellent care and died with children and grandchildren about her. APS saw how things were and dropped all charges.
She fought moving from her recliner, she fought leaving her home, saying "I'm being coerced," and she fought the two times we needed to change her SNF. Eldest Sister said "she just wants to be left alone," and I agreed after one year of begging. The ALZ didn't really kick in hard until 3 months before her passing, and things went swiftly when she no longer conversed. I wish you the best in supporting her. It's a tough row to hoe, whether she gathers her willpower to exercise or not.
My mom lives in her recliner. Parkinson’s, neurologist says no dementia. I get concerned about that. I know some Parkinson’s patients do get dementia.
Dementia and ALZ scare me. My godmother had ALZ. I did go visit her in NH after seeing my dad in hospital. NH was very close to the hospital so it was nice to be able to see them both.
Was always so sad when leaving NH. She didn’t know me anymore at the end. Her children lived far away. I spent so many hours with her as a child that were happy. I try to focus on those memories.
Maybe it’s frustration. PT is hard work. You have to want to participate.
At one time my mom said it was too hard to walk and walk and wanted to be in a wheelchair. I asked both of her doctors, primary and neurologist and they both said absolutely no wheelchair. Her doctor will order PT and OT again for her if she needs it. My mom has had it more than once.
Maybe talk to her doctors. It is easier for me to let my mom’s doctors to tell her certain things rather than me argue with her.
Do you have medical power power of attorney for her?
Have you had her evaluated for dementia? When my mother started she became very belligerent ( she already was narcissistic so never Donna Reed but went into rages where you could not reason with her at all, she literally just screamed accusations) , that’s actually gotten worse towards us although most of the AL staff talk about how sweet she is( hahaha, yeah nope, she has them fooled) . That fits with the increased confusion. I don’t know about chemotherapy but anesthesia and opioids , any physical or emotional stress can make dementia worse , I’d guess chemo could.
If she’s in AL they should have a nurse to do her dressings.
Could also be she wants attention. My mother has always been a nut job so it’s hard for me to picture “normal” but pre AL , she’d call us, claim the cat got out, in a panic, so we’d rush over ( 20 mins, middle of the night) and the cat was there sleeping on the chair. When we’d complain about her calling, she’d scream at us to leave then tell us if we left never to come back🙄🙄🙄🙄. Could the dressing etc be something similar with your mother? Just attention seeking?
Why isn't the RN or LPN dressing her wound? Should be part of her care. An 84 yr old should not be expected to do it. If the AL won't, call Moms doctor and ask if he can write an order for homecare to come and dress the wound with Medicare paying. If that isn't possible and the AL can't do it, then you may have to.
Leave your Mom alone. Let her recuperate. You mention PT/OT are they coming to the facility? Let them continue. How would you like people at you all the time. No AL or NH is allowed to force a person to do what they don't want to do. They can ask, maybe coerce a little, but they cannot force. Either can you.
The weather is getting nicer, maybe you can get her outside for a little while. On the way back to her room stop in the common area. Say "lets sit here awhile" If she says no, say "for me". Do not ask, do you want, the answer will be no. Same with the staff, they shouldn't ask "would you like" they should say "wouldn't it be nice". My daughter says let them think they have made the choice.
You have a good heart, but you have to allow her to do it her way.
I have found out with my mom that I can suggest what needs to be done or a remind her of what the doctor has told her but I can’t force her to do anything. She gets upset, I get upset, so I do what I can and what I can’t do is on her. We can only do so much.
It’s sometimes hard for me to determine accurately also. I take mom to all Dr and lab appointments. Parkinson’s is a neurological issue. Her body and mind don’t line up together so I can’t always tell what she is or isn’t capable of.
I can tell you that when she did home health the occupational therapist and physical therapist told me to allow her to do as much as she could by herself. I needed to hear that because I was overdoing for her. I was fearful for her because of her falls. It helped me to see through an outside objective opinion.
If you feel the need to control the situation, take a deep breath and step back. Defer to the medical staff. When Mom gets nasty,walk out.
Your mom is the one who has to care and want to live. You can't do that for her.
What does she want? Has the idea of hospice been raised with her? Your mom sounds worn out.