New name, old member

Dutiful One

I've been around a while. Formerly known as dutiful deb, I spent a decade caring for my mom. I felt that with the new change of caregiving roles, it was fitting to alter my screen name. I also value my privacy and wanted to remove any identifying marks.

It's been a long time since I posted here. My mother passed away 6 years ago. The years I cared for her where a whirlwind of diagnoses, caregivers, appointments, specialists….you get it. About halfway in, I began noticing changes in my husband's behavior. At first it was just a couple of incidents a year, but over time, his personality became increasingly different. At first, I was concerned that I would have two dementia patients on my hands, and then I sort of went into a denial, thinking, this couldn't possibly happen, could it? I also attributed my noticing the changes to my imagination; once you become engulfed in dementia caregiving, it's easy to see dementia-like behaviors in others, even if they aren't impaired. I've been at the point of wanting to leave, many times. I spoke about this to my own doctor during my last physical; his response was that my husband sounded "bipolar", but "you can't just leave."

The behaviors became very passive-aggressive, and came across as rude and inconsiderate. More recently, memory issues have become a problem. There have been incidents that have left no doubt in my mind. I began to reach out to doctors, getting a mixed bag of responses. The one constant, however, is that yes, there is something happening, but what I'm also told is that until he decides to seek help, there is nothing I can do. Well, he's never going to seek help, because he doesn't recognize the problem (I'm familiar with anosognosia). Most recently, I reached out for personal support through my healthcare plan. I was put in touch with a social worker, who connected me with a behavioral psychologist. She was not able to help me, but she set up an appointment with another social worker (an LCSW). That was supposed to be a phone appointment to take place this afternoon, but I never received a call from the provider. Right now I'm feeling very let down by my healthcare group.

Meanwhile, I'm dealing with my husband's increasing negativity, his obsessions and fixations, as well as constant dwelling on his childhood and wanting to spend excessive amounts of time with his mother (she's still living, and has undiagnosed dementia). He forgets entire conversations, loses things, has difficulty with complicated conversations, and frequently accuses me and others of "not understanding anything he's trying to say." He has lost his problem-solving abilities, has poor short-term memory, and is often socially inappropriate. I see the "lost" look, or "flat effect" on his face alot, especially in social situations. His temper can flare over something inconsequential but a major event is viewed with a blank look.

Sometimes I feel very hopeful, and other times I want to walk out the door and never come back. I always manage to work through, but I'm feeling the need for support more and more often.

That's enough for now…I'm sure you all get it. Thanks for listening.

M1

Deb: my heart goes out to you, facing this another time. I don't think I could survive it. Doesn't sound like there's much question.

Are your legal affairs in order? At least you can get the powers of attorney in place before he gets worse. Of course his being affected means that you need to change your own documents-i did this without informing my partner, as she also has anosognosia and her feelings would have been hurt.

so sorry, but welcome back.

Quilting brings calm

I’m sorry your doctor told you that. It’s not up to him whether you leave or not. I’m sorry you are facing this a second time. I’ve only dealt with my parents having it. I dread the thought of my spouse getting it. And I totally agree with your comment about seeing dementia symptoms everywhere once you become a caregiver.

Jgirl57

So very sorry you need to visit this forum again. Caring for a parent and caring for a spouse or partner are different dynamics, but many of the same issues . Hopefully you can wrangle him to the doctors soon.
My heart breaks for you to go through this again. As M1 mentioned, have a long talk with an attorney about any documents you need to revise or put in place. For your own health, he might need placement sooner rather than later.

jsps139_

I am so very sorry you are going through this again. I can relate. My mom passed away in Dec 2014, after living in our home for 4 1/2 years (She had Alzheimer’s). My husband was diagnosed with Alzheimer’s in January 2015, and I’m caring for him at home. It does seem overwhelming and a bit unfair when it happens twice.

I’ve read a few different posts where caregivers told their PWD that they have to get a physical in order for their insurance to continue. Do you think that would work for your husband? When I took my husband for his checkup, I met the Dr outside the exam room and expressed my concerns. She asked him to do that test where he had to draw the clock, etc and she told him she was concerned. She asked him if she could set up an appt with a Neurologist for him, and he got very mad and refused. After a lot of coaxing and her insisting that he would only have to go ONE TIME to get a diagnosis, he agreed (she was a real sweetie and he found it hard to say no to her when he started pleading).

I hope you can get him to the doctor and they can get him on some meds that will make both of your lives so much better.

Jeanne C.

Hi - I'm sorry you're going through this. It's so so hard to get your husband to go to the doctor when he doesn't see that something's wrong and is resistant. We went through that. Refused tests. Walked out of appointments. Unfortunately, it took an emergency situation and an inpatient stay to get him started on meds.

Obviously I don't know your husband or all of his symptoms. I'm certainly not a doctor. But a couple of red flags went up for me: that the doctor suggested bipolar and the anger or passive-aggressive behaviors. My husband was diagnosed with FTDbv in January 2023. The constantly changing mood, anger, and meanness (along with OCD and hoarding) were the big issues before things like executive function and short term memory went out the window. This may have no relevance for you (as you said, living with someone who has a condition makes you start seeing it everywhere), but I'm just throwing it out there.

All the best to you.

Dutiful One

I appreciate the kind responses. Although I'm sorry others are also in this boat, it's nice to not feel so alone.

Our legal ducks are in a row; of course, I know that no matter how well we prepare, something could arise that I thought I had prepared sufficiently for and didn't. I did learn a great deal about planning ahead when caring for my mother, and I also learned that some things come up that totally catch us off guard.

I also learned that diagnosis is a difficult road that is not always straightforward. Mom was showing signs for a while, and began to really nosedive after the death of my dad. Even then, it took a couple of years to get a diagnosis, and that changed after another year. As she progressed, an FTD diagnosis was added. My takeaway from that experience is that symptoms can overlap, and even what feels like an accurate finding can change.

In the case with my husband, I'm definitely seeing the same symptoms. There are health conditions that point to likely vascular impairment. The behaviors make me feel that there may be some frontal lobe damage. Of course, brain scans don't show that; one showed some ischemic changes, but he was told he was "fine" and the headaches were "just stress", so he holds on to that, despite seeing the results. Other scans have not showed these results, have revealed other issues that could cause a decrease of blood flow and oxygen to the brain.

I just keep putting one foot in front of the other, as we all do.

Thanks again, everyone.