Recently my husband has had mood swings from sudden, unprovoked fury to smarmy affection that feels creepy. I almost prefer the anger. Ten minutes later, he's forgotten what he said, and denies ever saying it.
I'm hoping that this is just a stage and not going to be permanent. Any advice would be appreciated.
This is not going to come across as the most popular answer, but when a situation becomes so unbearable for any caregiver in a situation such as this one, the first line of defense is for the caregiver to take care of themselves first. It's not always about what is right for the person with dementia, but what actions can a caregiver take before their mental and physical state wears out. What can they do to protect themselves before they crash out.
First, make an appointment for yourself. Secondly, pay for a couple of hours of homecare to attend your appointment, and run some errands afterwards.
Get a therapist who can help you over the rough spots and make those decisions.
Check with the Department of Aging if you are in the United States and ask about care for the elderly. Even home care for four hours three days a week can get you to a good start. Ask about facilities that provides respite care. My aunt would place her mother in a facility for a week to a couple of months just to get some rest.
It's not that you don't love your husband, and feelings of guilt may surface because we have been taught that if we don't remain of service way past our breaking point that we are not good people. Guilt is only when you have harmed someone. If this is the case, you are harming yourself.
As for the erratic behavior followed by the strange affection, try redirecting his behavior. Offer something to drink or a snack. If he is safe in the home, maybe you slipping to another room to start laundry and take a book or a magazine with you to get some peace and quiet.
I work as an aide and have worked some challenging cases where some clients should have been placed on medications or a facility like yesterday. How I cope with this is that I try redirecting when it is safe to do so. If a client is too agitated I wait until they calm down before approaching. Situations can quickly escalate if you get too close. I just let them have their moments of yelling and cussing while I go about finishing chores if it is safe. So, maybe going into a quieter room until they quiet down. Don't put yourself in harms way. Some of this can be Sundowning behavior that usually starts around 4:00 pm in the afternoon. Start writing down when these outbursts happen. When he has his appointment, share this information with the doctor.
When he says; he doesn't remember, he is telling you the truth. Don't try to argue with him because it is pointless. Just get to a quiet space for yourself. If you have hobbies, work on them. Dealing with sick people, we put our lives on hold.
Start looking for a facility that can take him with some assistance from an agency that deals with aging issues of the elderly who can help you navigate this rough terrain of dementia. There are also support groups online and probably in person groups.
It's a saying; if it doesn't work for the caregiver, it doesn't work at all. It sounds like you are at that point. Caregiving is isolating and unfortunately so many of our needs get unmet and placed on the back burner.
And if he doesn't have one then it may be time to talk to his doctor about what medications may help keep him more calm.
I was worried for her safety as well as his and definitely worried about my mom’s mental well being also. She was mentally and emotionally strung out much of the time for a couple of years. Like brink of a nervous breakdown and contemplating ending it all one way or another (but never agreeing to memory care or AL!)
Between the meds and the progression of his FTD, he gradually did become more apathetic. His emotions petered out also. To the point where he barely spoke, refused to shower or change his clothes, lost the understanding of day or night, and rarely moved. In some ways that was easier, but I have to say, none of the stages were “good” with him.
We all need to be a little less judgmental and not always accuse someone who may be asking an innocent question.
I would try as long as possible to make it work at home. It's what we would want if we were suffering. Look for assistance - other family members, friends, government.
It is hard, no doubt. But also a lot of rewards in knowing we are helping our loved ones when they need it most.
That said, if the need/decision is to admit to a facility, try to alleviate your guilt - you did the best you could. And they are doing the best they can.
Sudden outbursts are also signs of frustration - I agree, staying at arms distance, de-escalating, or saying "I'm going to do such-and-such, please let me know how I can help when you are calmer," or something like that.
There is no one-size-fits-all here. Just love, compassion, and care for yourself and for your loved one.
When I was in the thick of this, I thought I was losing my mind. I called his neurologist in tears, and she recommended a book that helped me understand what was happening and gave me tools to survive. The name of the book is WALKING THROUGH MEMORY'S FOG BY MARIA SANTOS (Available on Amazon). The chapter on mood swings and emotional lability explained that the brain's emotional center is damaged, and the person cannot control their mood any more than they can control a seizure. The book taught me to use "distancing" techniques, like stepping into another room when the fury started, and to use "redirecting" techniques when the smarmy affection made me uncomfortable, like saying "let's watch TV together" instead of engaging in the affection. It also gave me permission to not be okay, to feel angry and sad and frustrated, and to take breaks without guilt. I learned that this stage did not last forever. It lasted several months, and then it shifted into something else. The fury became less frequent, and the smarmy affection faded. He settled into a more flat, apathetic stage, which was easier to handle.
You are not alone in this. The fact that you almost prefer the anger tells me that you are exhausted and desperate for any kind of predictability. That is normal. The mood swings are not a sign that you are failing, they are a sign that the disease is progressing. The best thing you can do is to protect yourself. Step away when the fury starts, and redirect when the affection feels creepy. Take breaks, even if it's just five minutes in the bathroom. And please, get that book. It helped me survive the worst of it, and I believe it will help you too. Sending you so much strength, you are not alone in this ❤️.
See All Answers