Dermotologist: When to Stop

CindyBum

My DW had a small spot removed a couple of years ago. A tiny melanoma we caught early. Her father had a bunch of these taken off over the years and it got harder to manage as he went downhill with his dementia. He'd pick at the scabs and they would take forever to heal. Her other sister also has considerable melanoma concerns and no longer goes out in the sun unless she's totally covered up. So, like dementia, it appears they also share this medical issue.

My DW did ok with the small melanoma "surgery" (in office and took 10 minutes) when she was in Stage 4, but was hard to manage a bit after the surgery. Not terrible, just a little of her anxiety and hyper concern about the tiny wound.

She's firmly in Stage 5 now and I'm beginning to wonder…should I keep doing these dermatology appointments and get confronted with another diagnosis to remove more spots. Is Stage 5 too soon to stop worrying about other medical issues? God. What a question, but real life here in dementialand.

fmb

I do not know how recurring melanoma would be handled, but my DH had a similar situation.

DH had a squamous cell carcinoma on his forehead. It was removed surgically twice in the office. The dermatologist told him that if it came back again, it would require the MOHS surgery. At that point he was in Stage 5, and he said that he would not do the MOHS procedure. It is time consuming and requires a great deal of patience and the ability to hold still while they repeatedly take slices of the tumor and analyze them to make sure they have removed all of the cancer cells. It also leaves a larger scar because they have to remove healthy tissue to be sure the tumor is gone. By the time the tumor grew back about a year later, he was in early Stage 7 and in hospice care. We ignored the tumor, and he died with it, not from it.

This is a very difficult decision and one that can only be made by the caregiver and the medical team with input by the PWD if they are still cognitively able. Many people decide to not treat terminal conditions once the PWD has reached a certain point in dementia with the rationale that it is better to allow the PWD to die sooner from the immediate condition than it is to treat the condition and allow the PWD to suffer longer with dementia. It is not a decision I would want to have to make. ((hugs))

White Crane

Cindy, I wish I had an answer or advice for you. The last time my husband had a skin cancer removed from his back, he was able to let me dress it and didn’t bother it. If the same thing was done today, I don’t think he would be able to leave it alone. I’m sorry you’re having to make this decision.

Marchbanks

I have made the tough decision not to do anything that requires my DH to be put under anesthesia. He has Barrette’s esophagus and is overdue for an endoscopy but I’m not going to put him through that. I’ve seen posts on here that talk about not doing these procedures because you are removing exit ramps. It’s a gut wrenching decision and I try to think about what I would want. Personally I would want the exit but it’s such a hard choice to make for a loved one.

Biggles

These are heartfelt decisions we have to make and I hear you. Our very lovely Dr is ‘over the top’ with physical care. My DH said he was a little breathless, he loved the attention he got at one of our Dr visits so we started MRI, PET scans, Specialist’s. Why? No signs of stress or trouble breathing or pain even when we are shuffling along and what are they going to do if they find a problem. So my decision is no more poking and probing. All care, all love. We do skin checks because here in Aus it’s easy and a very common practice done in the surgery but, sad as it may be, I am no longer taking on tests that probably aren’t pertinent for example bone density?? Go tell. Decisions, decisions. Hugs take care.

annie51

I, too, have questioned at what point do you stop many of the routine medical tests that we’re so accustomed to pre-dementia. DH is in late Stage 5. The skin check is one thing I wasn’t sure about since it’s an easy thing to get done, but then you think about the what-if’s and the decision becomes harder. He hates going to the doctor so it’s one more stressor. I know that he would be picking at scabs, etc, so I’ll probably put this one on the “skip it” list.

Quilting brings calm

I think stage 5 is the time to stop worrying about certain things. It got very difficult to get my mom to the doctor due to mobility issues, her anxiety over going, lack of ability to follow through afterwards. Of course my mom had told me a couple of years prior that she didn’t want any life saving measures. We did put her on oxygen - that’s a comfort care thing. But it almost seems like torture to put them through procedures that they don’t understand and that aren’t going to cure the terminal illness of dementia

Some people linger in stage 5,6,7 for years. My mom did not. She lingered in stage 4 for several years, got to stage 5 and then dropped rapidly through stage 6, 7 on hospice in weeks.

SDianeL

when my DH was Stage 5 going into Stage 6, I made the decision to stop all specialist visits and testing. He didn’t understand what was going on and he wouldn’t leave bandages on. Memory Care facility did test his vitals including his blood sugar and they still gave him insulin shots and his meds. I would discuss with the doctors and consider not doing any surgery. I know how difficult it is. Ask yourself what would your LO want. What would you want if you were the one with dementia. Hugs. 💜

harshedbuzz

In stage 5, we had moved onto a more palliative approach to care. We treated a mood and breathing as quality-of-life concerns and backed off his BP med, statin and skin checks. Even with my now 87-year-old non-dementia parent, we consider all tests and screenings through the filter of "what are we going to do with this information?"

I have a friend who found herself in a scenario closer to what you're asking. Pre-dementia, her mom had stopped mammography at 80 reasoning that she wouldn't treat given the reality of that in context of her age. At 90, with moderate dementia, her mom did show symptoms which were confirmed by her PCP. Friend opted to honor mom's wishes and died— on hospice— at 93.

HB

Bailey's Mom

That's a tough one for sure. My HWD and I have both stopped having colonoscopies (I am 76, he is 78) and I don't have mammograms anymore. Neither one of us sees the value of going through chemo or difficult surgeries at our age. Dermatology procedures can be simple or difficult…I just had MOHS and am certain that my HWD would not have been able to go through it. What a thing to have to think about!

Carl46

Cindy, based on this and your description of your wife's confusion in "F Dementia", I think it would be kinder to stop the dermatology appointments. My father died of cancer and my mother died of VD and AD, and one was about as ugly as the other.