We recently (~2 months ago) moved my mom (90 years old) to an Assisted Living facility (Memory Care). She has dementia and has fallen 3 times in the last 3 weeks all of which required trips to the ER for stays averaging 7-12 hours. In the ER she is very combative. Pulling out the IVs, refusing to lay back in her bed for a CT scan, continuously trying to climb out of the bed for hours on end. I find myself getting angry with her, yelling at her to stop, etc. It was physically and emotionally draining. Last night after her most recent fall, I couldn't wait to drive her back home to the AL facility. I think deep down I am mourning the loss of my mom as she once was a lady in every respect. She was warm, loving and kind. I am having difficulty being patient with her. Today, I am feeling extremely guilty for yelling at her and being relieved at dropping her back at the AL facility.
I love my mom dearly. The dementia (primary progressive aphasia) impacts her ability to speak, she has lost 50 lbs, she constantly just stares at all of us, she has this new physical strength no one can believe. A very different physical appearance and mental capacity from 3.5 years ago. I am struggling with how to be a loving daughter and clearly feel I am failing as I am allowing the anger to seep in. Did anyone experience this? Any support is welcomed. Thank you.
None of us feel good about ourselves whenever we lose control. Your mom must be terrified as well.
I’m sorry that the mom you knew has been hijacked by this horrible disease. Get a new plan in place. No more ER trips for you, especially alone.
This.
Be sad it went the way it did. Be angry at the situation. Then make a new plan.
Would THEY manage her?
I think they'd have to.
Consider that it might be a better choice.
And yes, it may be time for hospice.
After my mom tries to grab the steering wheel from my DH as we were driving her to her new AL from rehab, we only used medical transport.
It's OK to be angry, it's a normal response to what you're going through. You're angry at the SITUATION, not the person. A big difference.
I visit a woman who had a brain tumor removed and suffered a stroke that has changed her personality a great deal. I struggle to spend time with her, because she can't remember anything past 15 minutes--so a 1 hr visit is more like 4 separate 1 hr visits. I am not family, but I am surprised at how upset I get over trying to bring a little light into her life. It simply isn't possible anymore. A lot of the women in our church community have given up on visiting her--as she doesn't remember and they feel like 'what's the point'?
If you can offload some of this drama with mama onto others, it may free you up to be more attentive and caring when you DO choose to see her.
My MIL has dementia, her kids refuse to see it and try mightily to get her to understand things--and she simply cannot.
Accepting the 'new norm' IS hard. And it hurts. Please reach out for some physical support and help. Mom may not remember much, but for some reasons, to me it seems dementia patients DO remember when someone has been unkind or dismissive.
I lived an entire state away from my brother. A fall and transport to ER would mean I spoke with ER in the phone. You are not contributing to reassurance or comfort. There is no utter reason for you to go.
Secondly, mom needs a calming med to reduce her combative behavior. How is she in the MC? Speak to her doctor and have Ativan or something similar on order as needed for this agitated behavior so she can have a dose before the next ER run.
Thirdly, you are human. These dementia behaviors are horrible and frustrating to witness for 15 minutes, never mind for hours on end. I have sat with my mother in the ER for more hours than I can count over the years, and let me tell you. I could've used a mouth guard for grinding my teeth. The last time she was ambulanced to the ER was for saying she had terrible chest pains. That's one complaint that'll get them a ride to the ER every single time. By the time I received The Phone Call and arrived at the hospital, she was insisting she never said any such thing. She had no chest pains at all, dontcha know. I thought my head was going to explode. It was 9pm. By 10:30pm I'd had it. I told her, ma, I'm going home. You're fine. The EKG is normal, the nurse is discharging you, the nice ambulance man will be here soon to take you back to your room. Omg, she started screaming, how will I pay the cab driver???? I forgot my pocketbook!! How will he know where I live?? I explained things to her another 10x and then kissed her cheek and LEFT.
She died 2 months later at 95 after I'd gotten her on hospice immediately after that last ER visit. It just wasn't fair to her (or me) to keep poking and prodding her and stressing her out with those ambulance rides to the hospital. That's the only thing I ever felt guilty or badly about after 10.5 years of caregiving.....that I'd left her in the ER that night when she was scared. Even though I knew she'd be taken home and properly looked after. SHE didn't, and I caused her unnecessary fear.
Dementia is truly an ugly thing for everyone. Those suffering from it and those of us caring for and watching our loved ones suffering from it.
Give yourself some grace. You ARE a loving daughter despite any anger that might seep in from time to time. Nobody is immune from emotions, even ones we don't like. Its such a hard road we walk, don't make it any harder for yourself than it already is.
Look at your anger as a message.
What are you really angry at?
Feeling out of your depth?
Feeling like you need to be Mom's nurse, transport, her everything?
That Mom's needs are too big?
That you don't get to eat, sleep, live your life because you are now 'on call'?
Look at YOUR reasons.
Then what can you change?
What can you delegate?
Eg Ambulance can escort to ER.
Medical staff can supervise, monitor IV, esure safety for scans.
Non-emergency escorted transport can be arranged to return to AL.
Delegating requires some letting go.
This is a hard step:
Moving from Doing Everything to Delegating to Others.
Or think of it as promoting yourself!
From Worker to Supervisor.
AL and LTC does not send an aide with a resident. They go alone. I had to be there for my Mom because of her Dementia. A male nurse tried to undress her and she screamed bloody murder. I had to ask for a female.
All: Real question here... Why the automatic ER trip after hitting one's head? Suppose the person's advance directive says they don't want surgery, period? What then does the hospital have to offer them? (Again, real question--I don't know.) Also, isn't cranial surgery on the frail elderly considered one of the major examples of harmful overtreatment?
My mom fell and hit her head a few years ago and spent a week in the hospital and 3 weeks (natch) in skilled nursing, and there was no actual "treatment." Ultimately she just had to heal on her own. The main thing she had to recover from was being institutionalized (muscle atrophy etc.)