Perhaps I am experiencing something that not many have. I only want to hear from the long haulers. Advice?

For anyone caring for a LO with dementia, it doesn't take long to become a “long hauler”. Just a few months of trying to cope with understanding the disease, maintaining your own sanity, and managing the emotions that come with the job, can cause a healthy carer to physically decline themselves. The behavior exhibited by those living with dementia can become not only, as you say, monotonous and annoying to the caregiver ( and I would almost call those emotions benign compared to what may come), but can eat you up in stress, anxiety, and worry. How do you respond to the accusations, the unending repetition, the delusions that the disease causes? How do you answer the unanswerable? Caring for a LO with dementia IS tough, it IS exhausting. This is absolutely the toughest “job” in the world. It is the worst of all diseases, not just of what it does to the LO, but also for its devastating effect on the family. I truly believe that it's harder on the caregiver than on the patient. Probably the most effective way to deal with the disease, and I'm sure you've read many of the posts on this forum, is to figure out her reality and become part of it. We use words like fiblets, and therapeutic fibbing to describe a caregivers attempt to help retain our LO's dignity or to mollify their anxiety. In his book, The Problem of Alzheimer's, Jason Karlawish uses the term “loving deception”. It's true, you can't get thru to them, you can't argue, you can't use logic, so accommodate them as best as you can.

You don't pose a specific question, but I want you to know that you are not alone. Many in this forum are experiencing what you are experiencing, and many have completed that caregiver journey and can certainly relate.

I wish you peace.

Yup.

For some reason, Ari, the saying "You can't light yourself on fire to keep others warm" came to my mind. I'm sorry for your circumstances. Maybe if you list some more specific things that bother you, you'll get some tips on them. It sounds like your mom is agitated a lot. Since she's on so many medications, I'm wondering why something that soothes and calms her -- and therefore you, too -- isn't on that list. Does she have any psychiatric care at this time?

My mom was on about eight medications until January when I put her on hospice care and has an imaginary husband. The only good thing about him being in her mind and forgetting my wonderful dad is that he's always with her, but my dad can't be anymore. He died in 2018, and it completely rocked her world. The imaginary guy showed up two months later, and Dad disappeared. We go along with the tales of Dan the Invisible Man, because he keeps her from being afraid and alone.

Now she's on hospice care. She has congestive heart failure, dementia, gout (that's a new one), an elevated heart rate, she survived Covid in January, and is now having after-effects that cause random bruising and blistering that leads to wounds.

Because of the strange bleeding/bruising stuff that's suddenly cropped up post-Covid, the hospice nurse has taken her off her blood thinner, her blood pressure medication -- everything -- except a diuretic and thyroid. Weirdly, her blood pressure is perfectly normal, her heart rate is in the normal range for the first time in months, and she's doing better than she has in six months.

Consider taking your mom off some of her medications with doctor's supervision, of course. Ask her doctor what they're really doing for her, and are they helping or hurting? I remember years ago my mother telling me of a friend whose wife took him off everything because it was just too much, and he improved greatly. She was intending to let him go peacefully, but he got better, so my mother isn't a unique case where taking fewer meds seems to be a better choice.

I think too many medications are just poisoning our loved ones' bodies rather than making them work better. This could be the case with your mom and might be worth a conversation with the doctor. I know you didn't want to hear that, but I'm not advocating more meds, I'm advocating fewer.

Arimethea, please tell us what you need!