My dad is in a memory care home. The stress caused him to decline substantially in the last couple of months. He has both Alzheimers and vascular dementia and the doctor thinks he is having "micro-strokes" (there is a medical term for this that I don't remember) that is causing this "step-wise" decline.
He used to be confused with horrible short-term memory, but otherwise okay. Now he is obsessed with certain topics. One of them is that my mom is cheating on him. He angrily accuses her of this (they don't have any contact), non-stop, calling me over and over again every day. I am usually able to redirect him to something else but it is extremely stressful to me. His anxiety about everything is often high and I am the only one who can soothe him. This makes me feel tremendous pressure and I feel my own anxiety ramping up every time I see his number appear on my call display.
I just don't know how I'm going to handle it anymore.
In answer to shb1964 - How do I respond or do I respond?
I DO respond, time and time again, different ways. I respond because I understand that although Mom will not remember anything in a few seconds, she does have an inner struggle of some type which she cannot resolve, so I try to soften her state. Here are some of my answers. [And yes, once a month I allow myself to cry because I feel cruel not bringing her to her home.]
- "Mom, you are not in a hospital. You are in a nursing home." This sometimes relaxes her as one of her delusions is that she has been in a hospital and no one is doing anything for her.
- But when this reply doesn't work, when she then responds, "I know I am in a nursing home but I still want to come home. I am taking a taxi today." Then I continue: "Yes Mom, I understand that you want to go home. Let's talk about this when I visit you tomorrow." When I say that, she feels heard and at peace that her need will be resolved tomorrow. In a moment, she has forgotten that she wants to come home.
- In two moments :-) she calls back wanting to come home as she has forgotten what I told her, I may pick up the phone or not...mostly not. It hurts like hell inside but it is my survival red-light taking over here. Next time, on the script, is reminding her: "Mom, for many years, you told me that the day when I was no longer capable medically to take care of you, that I should find a good nursing home for you. Well, this is the best nursing home in all this area and you have lots of people here that know you and love you." This assures her that all is under her control; this is a good strategy as there is little they feel they can now control.
- If this does not work, then I offer her the last card I have. I take her hand if I am with her and tell her I love her. On the phone I tell her that I am not far and can be with her instantly at any time she needs me. This makes her feel secure and that she is not alone. I follow with connecting with her feelings and an old sense of what is for her the right way of being: "Mom, the last 6 months that you were at home, I had to care for you, could not work and could not sleep or go out with my husband. I got sick (this is true). So, I had to care for my health. I want the very best for you. So, I got you this wonderful place to care for you. In that way, we are both healthy. I love you so much." To this, the part that was a good wife understands and at times she replies: "That is the best decision you made. You have to take care of your husband. He comes first."
Mom is still looping and this is her state. I am trying not to loop with her as that hurts her more. If she senses in my voice that I feel bad, then she latches on to that and uses it to manipulate my emotions. Mom's seem to be very good at this and we fall for it!
My hardest lesson has been to separate my old feelings of cultural obligation, family responsibility and personal (unfounded) guilt, from the ability to soothe her. Otherwise, we both loose.
This is not easy. It sucks to be in this situation. But, I am using it as a spring to my inner growth in witnessing what still gets me off my center (making lemonade, as they say); and at the same time, be a better support to Mom who in various moments may be experiencing a difficult inner life at no fault of her own.
I once heard that if you want to be enlighted in this life, become a swami. If you want to do it faster get married, and even faster than that, have children. Well, I feel that being a caregiver to dementia gets a LOT more 'heaven credits' and has quicker self and life-learnings than anything else I have encountered.
With love!
First, don't feel alone. When I first began communicating in this blog, my blog name was "caregivertired7", so I totally understand that feeling.
After 5 years of her living with us, both my husband and I got quite sick as Mom (almost 98!) also has ALZ and vascular dementia. Hard to do this care! I had to make a few decisions which were for me very hard: 1. I had to allow her to go through her stuff without me always being her support, and 2. (for the sake of our own health and marriage) I had to place her in an assisted care facility long-term.
At this point, I changed the resonance of my blog name from "caregivertired7" to balancedCaring, as I felt I was doing a disservice to myself energetically with that negative title.
So, once she was in long-term care, I had to deal with a different type of stress - Yes, at that time began the 10 to 41 calls per day. OMG! BUT, I felt relaxed about her having good care and us being able to at least sleep and work (we are self employed at ages 67 and 70). I would listen to her VM right away, as she does not know how to call the nurse (right next to her!)...she calls me and says she doesn't feel good then I call the nurses.
Mom loops with 3 things:
- "I want to go home. No one is doing anything here to me. They are not even giving me medicines, and the doctor has not come to see me." (Note: she thinks she is in the hospital after only a few days...she has been there 2 years now)
- "Are you okay with money? You don't tell me the truth. I know you to lie to me about money." (Note: all is well in that regard with us)
- "Someone has robbed me! My wallet is gone and all the credit cards and money in it!" (Note: this goes on a few times each week.)
After I realized that she was having a hard time emotionally handling the high anxiety/confusion that these illness bring to the person, I took her to the psychiatrist and they placed her on a low dose of Celexa as liquid, anti-anxiety med. - a med non-harmful for her issues and one which keeps her great personality and joy intact.
The best decision I made!
Mom has been on it now for 5 months. She is much calmer. The repetition is still there, but the level of anxiety is not there. Better for her. At least she is enjoying moments of peace.
Unfortunately, these illnesses do not get better, but worse. You WILL handle it if you remember to pace yourself each day (like running a Marathon), rather than try to run a real fast race each time you hear the gun go off.
This is a great vehicle for all of us to know that we are not the only ones to have to deal with this. It is definitely hard and cruel for the person and for the caregivers, yet, I am trying to learn to be present for her in a non-reactive way so that I can be a point of balance for myself, my clients and Mom too.
I hear your heart.
With love,
balancedCaring
PS: Apologies that I went on for so long!
It may be an odd blessing in disguise - at least that's how I view it - that rapid decompensation from stress and anxiety, while hellacious now for everyone, may push him past the point of being able to make those calls. I truly get the extreme frustration and annoyance with the constant repetition. We had gotten that from Mom for years before this thing kicked in to high gear.
I would suggest removing the phone from the room. Blame it on the MC facility saying they chose to remove phones for cost purposes or something. If you are able to get support from a local group (usually free of charge), do it. It helps to have an outlet with people who understand, have been there and done that. Good luck to you.
That is a great suggestion, thank you. Unfortunately - or fortunately? - he still knows how to use the phone and my regular home number is stuck in his head. We have tried getting him a pre-programmed phone with pictures of us that he can just press to call but he still returns to the keypad and punches in the numbers that are stuck in his brain. :(
I'd ALSO discuss his agitation with his doctor. Mental anguish is no less painful than physical pain. I'd explore medication to help him with the anxiety and obsessions. It really helped my LO who was in MC. She went from crying and worrying constantly, to be being very content. She takes Cymbalta, but, everyone is different. I'd inquire if your dad would benefit from something.
Its a tough, but maybe you don’t need to answer his every call. Give him 2 calls a day that you answer. When my mother started calling me at 3AM, I turned off my phone. Nothing awful ever happened. Don’t spend hours trying to convince him something isn’t so. You can’t any more than I could convince my mother the nursing home wasn’t spying on her. The Memory Care is being paid to care for him. It is staffed with people who are adept at redirection and “soothing” upset residents. Let them handle it. You do not need to be involved in every episode to the point you are at now, stressed, anxious and sad. Trust the staff at the MC to help him.