The End of My Respite Care Weekend

I slept in again this morning, which not only delayed but also put a halt to the idea Two Feather and I had for today. We thought about going to an open-air flea market in Kirwin Heights where we used to set up his Indian art. We haven’t been there for three years. It’s an early market, though, most vendors are set up at 6:00 AM and leave by 1:00 PM, so it was senseless for us to drive the 45 minutes knowing most of the vendors would be packing up to leave.

Two Feather and I spent the morning talking about how odd it felt to sit on our deck and enjoy our morning cups of coffee together as we did every morning before I moved in with Mom. We reminisced about the powwows and gatherings we had enjoyed and talked about what we might do with our time when the day comes that we’ll be together again.

That discussion didn’t last long because we both felt it was somewhat wrong to discuss a future when the alternative meant that Mom would no longer be here. Yes, we miss our life together, but neither of us would wish for the inevitable to come sooner in order for that future to happen. Our life together was and is precious but having Mom around is too.

We also talked about something that disturbed me on Saturday evening after I called to check to make sure things were running smoothly with Mom and Angel. My brother has been given specific instructions to call and arrange a time for his visits. He’s been told that if I don’t answer the phone we’re either not home or I’m busy with Mom. “Busy” could mean I’m giving her a shower, cleaning up a soiled bed, cleaning accidents on carpeting, or cleaning up Mom after an incontinent accident.

Lately, if I don’t answer the phone and call him back to his immediate satisfaction, he’s been showing up at the house unannounced. He’s found no one home and drives back to his house. I know this because he left a message saying that he stopped by and for us to call when we got back home. When he has shown up during one of the above mentioned busy times, I’ve called him when I’m finished and asked him not to just show up. He accusing me of “not letting” him see my mom. He tunes out what he doesn’t want to hear and exaggerates what he thinks he hears. His response has always been that he doesn’t have to listen to what I say, and his attitude is that he can do whatever he wants, whenever he wants, with no regard to anyone but himself.

The last thing Mom or I need is for him to push his weight around after dealing with one of the situations that I mentioned above. Each of those situations changes Mom’s mood and the mood that results from them is seldom easy to deal with. It takes her an hour or two to get over her anger of incontinence and her anger that she has to take a shower. Most Alzheimer’s patients despise getting in the shower. Any caregiver can tell you that performing daily hygiene is no easy task.

Saturday evening when I called Angel, she told me my brother “showed up” without receiving a call back. Needless to say, this put a damper on the only respite care I’ve had in more than a year. Mom isn’t comfortable with him visiting when I’m not around. I was a bit disappointed in the events that took place and unfortunately expressed that disappointed to my daughter. If I had paid a home health nurse to stay with Mom, that person wouldn’t have known my brother from a rock, and therefore would not be obligated to open the door. I did however understand that Angel was put between a rock and a hard place trying to enforce the simple request I’ve made to my brother, over and over again. She didn’t want to deal with him any more than I do. She’s heard about the outrageous nonsense I deal with from him, and sometimes it’s better to totally ignore people who just don’t get it.

Rather than cause a scene, in front of my mother, and her grandmother, she told him he could visit for a little while, but he’d have to leave soon because she was getting ready to make Mom’s lunch.

Not only did he not comply with my request of him not just showing up, but also he infringed on the time my daughter took out of her busy life (driving four hours from her home) to share with her grandmother. Both, in my opinion, were just more representations of the rudeness and lack of consideration my brother shows. It never ceases to amaze me why some people think they aren’t obligated to comply with the guidelines set forth by the caregiver for the comfort, health, and welfare of a loved one.

I returned to Mom’s house at 3:00 PM so Angel could drive the four hours and be home before dark. She didn’t leave until 4:00 due to the frustration I showed and the discussion we had over this matter. Even leaving an hour later would have put her at home before dark and before Katie’s bedtime at 8:00 PM.

When I didn’t receive a call from Angel by 9:00 to tell me she arrived home safely, I became concerned and called her cell phone. She called back about fifteen minutes later. I could hear the frustration in her voice. Some of it may have been from the conversation we had, but most of it was because she was still driving and hadn’t made it home yet. She’d gone through Pittsburgh, instead of taking the turnpike from Cranberry, and she hadn’t realized one of the Pittsburgh tunnels had been closed. It took her two hours to drive the long way around Pittsburgh to get back near the turnpike. She missed her daughter all weekend, and she missed getting home on time to put her in bed for the night. Her frustration turned to tears and I couldn’t help but feel horribly guilty that I’d taken her away from her daughter and husband for a weekend.

The conversation she and I had before she left wasn’t important now. We both agreed that things should be different with my brother, but regardless of how anything is approached with him, he puts up an automatic defense attitude that gets in the way of any conversation, especially when it comes to me.

Mom had a fairly decent weekend while Angel was there. No accidents. No messes to clean up. Angel got a small taste of what I deal with each and every day taking care of Mom. She also got a taste of what it’s like to miss her own normalcy too. She told me she doesn’t know how I do what I do, and I told her I do it because I love my mother. She reminded me that I should take more time like this so that I live long enough to enjoy a life after Mom. And I reminded her that sometimes it’s easier just to continue what I’m doing rather than deal with the added problems resulting from leaving Mom for a day or so.

It’s difficult not feeling guilty for wanting a day to spend with my significant other, or just a day to spend on my own. The repercussions that result from me being away add to the already difficult task of care giving. Two nights and one day without my presence set Mom back a few notches. All evening she asked if I was going to stay the night and she cried. She said, it was nice visiting with Angel, but she didn’t want me to be away from her again. She was afraid I wasn’t going to come back. She told me she wasn’t comfortable with my brother visiting when I wasn’t home. All evening, after she was in bed, she kept calling out to me to make sure I was still around and to make sure no one else was in the house. Each time she called out for me, I’d go downstairs and reassure her that I’m home and wasn’t leaving again and the only people in the house were us. Five hours, every twenty minutes or so, I’d repeat the same thing: go downstairs, tell her I’m here and staying, we’re the only people in the house, and I’d go back upstairs. She finally fell asleep, exhausted, around 10:00 PM.

Going away for a weekend is just not worth it to me if it’s going to affect Mom this way. I care more about her than I do myself and the anguish caused to her by me being gone for a few days does me no good either. We’ll see what tomorrow brings, but I can place bets that tomorrow I’ll be asked if I’m staying the night again. This is just one more perfect example of how changing the schedule or routine of an Alzheimer’s patient can throw them into a more confused state.

Health care workers tell caregivers to take time like this to relax and recoup some strength. The nurses at the Day Care keep telling me I need to take time for myself. They say, “It may confuse her or make her angry, but she’ll get over it. She’ll forget.” Granted I need to keep up my own health in order to take care of Mom, and respite time allows the caregiver to relax and unwind. But whether Mom forgets within a few days that I was away or not, I just don’t know if I agree that it’s worth adding to her confusion and causing her unneeded anxiety. I’d rather her feel comfortable and secure and her know that I’ll be here until her last day on this earth. She knows she can depend on me and I can’t take that security from her, ever again.