The Caregivers' Guilt Dumpster - Open for business

@leeleip I understand where you are. I had reached the point emotionally, that anytime I was asked how I was, even by people who were just making casual conversation, I would feel myself tearing up. I couldn’t even talk to friends who would ask about my husband without crying. The best thing I did for my husband and myself was to enroll him in a Respite program at a local church, and myself in their caregivers support group that meets monthly. He only goes one day a week right now, but I have four hours to myself every week, and once a month I sit with a small group of other caregivers and we share with each other our greatest fears and concerns regarding our loved ones. Through guided instruction we are learning how to better care for not only our loved ones but ourselves as well. I don’t know where your mother may be in this journey, but if she is still able to get out and go to this type of program then I highly recommend it. If she is not able to then I would suggest you have someone, family or paid care, come in occasionally to enable you to have some “respite time” for yourself, and to find a local support group that you can participate in. It will help you so much to be able to share your concerns with others who understand and most importantly you will see you are not in this alone.

@cnutt Our previous visits were so short and unproductive I was beginning to wonder if we should even bother going, but this last appointment, before we went, I went back over my notes and highlighted my main concerns and I went in prepared and covered all the incidences that had occurred in the previous six months that I was concerned about. The doctor really listened and set plans in place that have been very helpful. For the first time I felt like he was listening. He wasn’t just going through the motions as he previously had. We are our loved one’s advocate…if we don’t fight for them, who will?

@cnutt I keep a journal of anything out of the way good and bad that goes on with my hubby, that way when we go to his neurologist, which we do every six months, I can give him a run down of how things have been going. If things have been especially bad, like they were over the summer when he was having so many delusional episodes of people trying to kill him and he had so much fear going on, then I will reach out to him by either calling his nurse or going through the portal and the doctor will make necesssry medicine adjustments. I also talk with our family doctor at appointment times throughout the year to keep him abreast of my husband’s progress. The doctors understand that your husband is going through change in his journey…to them it’s “normal” progression. I don’t call my adult kids daily to tell them every crazy sounding thing their dad is doing (continuously resorting through his belongings and hiding everything he has that he feels someone is wanting to steal), but I do let them know when it’s something major (like his going up to the neighbors and asking them to call for help because someone is out to get him). You will learn with time. At first everything is so alarming, but as you become more use to his behavior you will find it takes a lot more to alarm you. I hope this helps you.