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My Mom now struggles with UTI's but we found out the hard and frightening way, my Mom was NOT my Mom!!! I was afraid seeing her like that. After being treated for the UTI, she soon returned to her stubborn, demanding and controlling ways except with clarity and self control and a good heart mixed with love.
AZ is also scary place to live, my Mom is on the Excleon patch and Nameda has allowed her to be a better person for her and everyone around her. I too used to dread going to see my Parents because of their behaviors but my love for them kept me coming however, I would be remiss if I didn't say that prayer and my faith in God is what gets me through. I petition you to find what gives you strength and courage to lean on, also use your community resources for the elderly and read up on the elderly. I’ve learned so much, I’m now journaling for my Daughter for when my turn comes.
I have a very good relationship with the NH Staff, everyone from Laundry, Housekeeping, Nurses, Techs, Dr’s, Receptionist, Activities Coordinator NH administrator. They know me on good terms but also know that I am present, I ask questions, I am supportive but my Parents are my main point of concern and I do everything I can to keep it like that. A smile, thanks, hug, cookies and the like go a long way.
I wish you better, don’t give up come here and cry, vent, explore ways to help your Family to make this journey easier.
What you are seeing with your Mom, as you are hearing, is quite common. The pain comes from the gap between what is and what you think they are supposed to be. This is just how things are for NOW. Maybe medication changes will help. Maybe time will help. Maybe humor will help. But what will genuinely help now is to quit hoping for a different situation. It's one thing to tell yourself you "can't handle the uncertainty" and another to say, "I don't like that she has changed so much is frightened and I can't help the way I wish" (or whatever is really true for you; that was just a guess). The second way of seeing things is closer to the objective truth, and there is a degree of peace in calling a spade a spade. The more peace you walk into the place with, the more peace she will be surround by, during the visit. It is how it is, for now. Hope this helps.
Both you Mom and your sister need your support, so I would not stop visiting. Counseling might help you realign your expectations so that you can create some distance with her when you visit. How would you react to a neighbor or friend who had this illness? You would not be as emotionally involved and that is what you need here. In other words, temporarily shift into the professional "caregiver" mode, instead of the daughter mode.
My Mom has severe bouts of Sundowner's syndrome which mimics Alz. When she is in this mode I try to follow her stream of conversation and go with it. She is sometimes belligerent and wants things "fixed" right now and in her way, but very often they are unreasonable requests such as you mentioned..."wanting to go home" etc.
Try to think of it as giving your sister a break, if that will help; that you are there in support of her. If she is going there everyday, asking you to come every other weekend sounds like a reasonable request. Perhaps it would be best not to bring young children or have several people in the room at the same time...they get overwhelmed.
Bring her things that may create a soothing environment for her. Family pictures, quilts, scented sachets, music, whatever works. Find those moments where she is calmer and make a mental note about what you were talking about at the time or what was in the environment that caused the peaceful moment.
This has to be the worst ailment on the planet. There is no pattern, no way of predicting what the next step will be.
Try to muster all the patience you can and "center" yourself before you leave by not expecting the worst. You do not have to spend hours with her, but the visits will help out your sis and give you a little peace of mind that you at least got to check on her in person. It is good for these facilities to see a lot of visitors coming in...those patients get the best care.
I hope there are support groups in your area. If not, find a good counselor who deals with elder care issues. You cannot reconcile these feelings on your own.
Good luck.