Surgery and possible progression

herbalgoat

I already suspected that my mom was progressing from mild to moderate, but after a surgery, things have become even more noticeable, but it's also unknown whether the surgery was a factor. But now I'm also worried she might be going even further than moderate.

Her sleeping got a little screwed up due to meds making her drowsy, but she hasn't needed them the past couple of days and things still seem bad. Despite all attempts to keep her awake and active during the day, she sleeps often and can be hard to wake up, though she sometimes wakes up on her own talking to someone she was dreaming about. Her sleeping during the day has meant she hasn't been sleeping at night, which makes it hard on my dad and I.

Making it even harder is that she keeps trying to remove the bandages from surgery. It was on her head, so she keeps trying to do things with her "hair" or "hat," but we have to scold her (that's not the right word but I can't think of anything better) every time she goes to mess with them, epecially since there are also two tubes sutured in to drain excess blood. Then she asks questions and it's been difficult to not give her the gruesome details because she won't take "just don't" as an answer.

Her eating has also changed. She always ate less than a full portion depending on the food, usually 1/2 to 3/4. Now she barely eats 1/4. We have to "force" her to eat "breakfast" though because some of her meds need to be taken with food. But with her so tired all the time, is she really full or is she just too tired to bother? And the lack of food is obviously also going to contribute to the low energy. And I know this is also a natural progression point. It's all so confusing.

Tonight, though, I learned she doesn't think we're home. She thinks we're "upstate" and that she lives at her childhood home. It makes sense now when she asks about her mother, who's been gone for over 10 years now. Same with her father and sister, both of whom also get asked about sometimes. I know you shouldn't remind them of someone's death, though. For when she asks about her parents, I just point out that she's the only Mom here and my dad is the only Dad here. It's harder when it comes to her sister, though. Saying I'm the only sister brings up my brother and then she asks about him and it spirals.

I guess I just needed to vent, but would also appreciate some advice. I'm hoping and praying that her follow-up appointment will clear her from needing the bandages and the tubes, and that we can get her sleeping back on track if that's the case, and then see how things go from there. The issue after that will be how a large chunk of hair needed to be shaved, so much so they should have just shaved it all, but that's a battle for another day.

Quilting brings calm

Surgery is hard on most people, even those without dementia. I’m four weeks into a knee replacement and I lost my appetite for the first three weeks after surgery.

Anesthesia has been known to cause people with dementia to get worse permanently.

In addition, for people with dementia or the elderly, there’s a temporary condition called hospital induced delirium. The symptoms you describe pretty much describe delirium. My mom went into the hospital the day before my surgery. By that evening, she thought she was in a new assisted living facility. She was mad at my dad for not ‘moving’ with her. She just couldn’t deal with the change in her environment and routine. She was only in the hospital for two days. It took her several days to get back to what is normal for her,

M1

You're describing some kind of surgery with head incision and drains? Worsening would be expected with this.

Emily 123

Hi Herbalgoat,

It’s easier and more soothing to meet the person in whatever time of their life they’re accessing to talk with you. So if mom thinks people are still alive it’s ok to run with that and make up a reason why they aren’t immediately available- maybe they’re visiting friends, or at school, etc. Since she thinks her parents are still alive it would be gentler to fib that they’re alive but not available. At some point in the disease you realise there’s nothing to gain by overexplaining or trying to situate your loved one in the here and now. It’s less confusing for them, and ‘going along’ may help keep your mom calmer.

It’s not unusual for even relatively healthy older people to become a bit disoriented as the days go by in the hospital. With something like your Mom’s surgery it’s not unusual to see some progression and delerium in the hospital. She may or may not come back to baseline once she’s discharged. It’s probably better to plan to support more rather than less post discharge.

mommyandme (m&m)

Welcome to this forum, though very sorry for your need to be here.

Often times, caregivers choose not to go ahead with a surgery for their LO, depending on the type of surgery along with their stage of dementia…Quality vs Quantity of life. Many of us would rather have our LO die from anything else besides the horrible end dementia offers. I wonder if your mom might have been a little farther down the dementia path than originally assigned? Surgeries, hospitalizations or illnesses in general can produce a decline and the patient may or may not come back to baseline. Seeing her in a declined state is not surprising. I hope the surgery proves successful and she bounces back, only time will tell.

I hope you don’t come to the place of second guessing, although I imagine we all do at times while caring for our LOs. Thanks for sharing and keep coming back.