Is surgery for someone with advanced dementia ever advisable?

Sunny, when a patient is skinny with a bloated abdomen, the cancer is usually well advanced, well metastasized to other places. No surgery. CT scan picture may show a dense white mass, which can be needle biopsied, I hope. Then you work out a plan with Hospice for her. Morphine is her friend.

Sunnygirl, My mom was in a memory care unit at a very nice NH for 4 years. Near the end, we discussed the need for Hospice with them and they said that they offered palliative care that pretty much would do the same to keep her pain free, happy as could be expected and safe. They were good to their word. The staff social worker also sought out family who visited in case they needed to talk it over. They were just lovely right to the end and it spared Mom another transition to a different place with new people. A very good thing I might add. She passed there in April peacefully and we were very grateful for their kindnesses.

Oh, she has a bad stye and is on antibiotic for that.

She has osteoporosis and is on prescription med for that. She has very brittle bones that break easily.

She is on meds for Type II diabetes, (she refused to take meds for that for many years. I'm shocked she's not blind or has organ failure.)

She's on meds for high cholesterol, (refused to take meds for that for many years and had an horrible diet of high fat, high salt, junk food for many years.)

She was on placed on meds for high blood pressure a few months ago, but then it suddenly went too low and has stayed low, without meds. This is odd, IMO. Most of her adult life she had high blood pressure that was untreated. She would ignore it. I begged her to take meds for her conditions for years, but she ignored me. This was before she got dementia.

She also takes Vitamin B12 and Vitamin D. She's also now on an antidepressant (waiting on that to help her mood) and tylenol.

She's been on disability due to arthritis in her back for about 6 years. She used to be obese, but is now too thin. Her body is super skinny with no muscle, but her abdomen is very large and appears to hold fluid all around and then there is the mass on her side.

The recent MRI shows multiple strokes, plus there are indications of Alzheimers. Her hands and arms now shake and her legs can be quite stiff and weak, though at times they suddenly appear more flexible. She has severe balance issues and is weak throughout her body.

She refuses to eat most of the time and likes to sleep a lot.Sometimes refuses to take meds or to get out of bed. Has lost interest in tv, radio, reading, Talks about her dead parents a lot, which is not normal, talks about wishing she could see them. I tell her they are with her in spirit. I'm not sure she understands that. I provide her pictures of them, but she isn't interested. She often tells me she wants to quit. I thought she meant quitting her job. At times she thinks she's a work and she is employed at the ALF.

Sorry for all the details. I just wanted to make sure you get the full picture.

Thank you all.

I don't want to prolong her pain. I just want to do anything that will keep her comfortable and help reduce pain.

She gets very scared when getting an MRI or x-ray and has to be medicated to relax her. She cried out like a child when she laid on the doctor examination table last week. She was clinging to my hand asking what was happening like a child. I explained the doctor just wanted to take a look at her belly. It terrified her. She's scared of doctors and especially hospitals. Every trip requires me to repeatedly reassure her that she will return to her room and not be kept at the office we are going.

I really hope we are able to avoid anything invasive. Her doctor seems to understand that, but he has ordered the CT scan. I suppose we will meet and discuss the results soon. I'm just so anxious. The unknown can be so frightening. Thank goodness I have this site to get support. Thanks to all!

If she's as demented as your original question suggests she will not understand what is happening to her if she has radiation, surgery and then requires chemo. If it is cancer there is more to treatment than just surgery. Why would you want to prolong the death of someone whose quality of life is already declining? People must be allowed to die with dignity. That is what hospice is all about. Good luck.

Is she taking any supplements? Magnesium is often a good choice for osteoporosis. Consult her physician because magnesium also helps govern the heart rhythm. Usually it will only cause a loose stool if too much is given, but just to be on the safe side... As for the rest, I would probably refrain from surgery under the circumstances. Again, what would she choose if she were herself?

I guess what is scaring me the most is that my cousin's parents both died of cancer, but she's had several blood tests for her diabetes, cholesterol, vitamin B12, and liver and I don't think there was anything alarming. Just that her blood sugar and cholesteral were high and she was anemic. Would cancer show up in those tests or must you run specific tests for that?

My 80 year old mother-in-law who isn't demented had knee surgery a few years ago and regrets it. It cost her more than a year of her life as she tried to recuperate. The gains were very short lived. She was always very aggressive in her treatment plans and trusted what surgeons said. She has fabulous health insurance on top of Medicare and may not have thought about the consequences beyond payment. All of her children including us in-laws advised her not to have the surgery. But her husband is also a believer in the medical system and didn't agree with those who were advising pain management. Now she's in a wheelchair and frail. Even when an old person is mentally together surgery is an extreme undertaking.

I forgot to add. If the mass can be reduced by any way other than surgery, that would be good. I'll be sure to ask the doctor about that. I pray there are nonsurgical options that wouldn't make her sick or weak.

I appreciate all of your thoughts and experiences. It does help.

My LO is my second cousin. I'm the only person left to help her. Most of her other family members are very elderly, infirmed or estranged from her. I've asked for their input and they have refused to contact me.

She's in a good ALF and they see her condition and have been honest with me. I could see the seriousness in their eyes.

She named me as her POA and HCPOA years ago and thank goodness, since I had to jump in fast when her condition was discovered. I've done everything in my power to get her help, medication, medical attention, nutrition, etc,, but she continues to go downhill. The ALF team explained that this happens with her conditions. She may have good days, but every time I see her, I can tell she's not well. We are seeing one doctors every week due to her conditions, primary, 2 orthopaedics, neurologist, ER, MRI, etc. Once we get all the information, I'm going to try to give her some peace with palliative care as the team suggested.

I know what she has always told me about staying alive when you are not healthy or happy and I know she never wanted that. She made the decision to allow her mother to go peacefully, when her mom was in the rest home. Her mom had cancer, got radiation, but it didn't work. She was too weak to undergo any kind of other treatments or surgery. It was the right thing to do and her mom told me she was ready to go. She asked me to look after her adult daughter and I agreed. My cousin has always been immature and essentric. I feel a great responsibility to do the right thing.

I have read from the Alzheimer's association medical experts that invasive procedures are not recommended for people who have terminal illnesses such as Alzheimers. I don't want to make her more miserable and cause her more pain. Unless restrained, she would pull at the bandages and harm her incision. She refuses to leave tape on her fractured fingers. She has no memory that she takes it off.

My cousin has recently starting talking about her parents a lot lately. She talks about seeing them again. At moments she seems lucid, she asked me at times why this has happened to her. She has stopped watching tv or listening to her radio and has little interest in eating and is continually losing weight.

I don't know how to describe it, but her face looks odd to me. She doesn't look like herself. I can't figure this out.

She denies any pain in her side or belly. She does have pain in her fractured back, fractured hand, knees, and arms and takes tylenol for that. I'm waiting to see if the antidepressants help any, but now she cries at the slightest thing and becomes confused about most everything, even though I explain it in simple terms over and over.

The ALF doesn't think she's ready for their NH, but her behavior of refusing meds and refusing to get out of bed make her not a good fit for the ALF if they continue, so I'm looking for a Memory Care facility?

Do you think they will allow Hospice in a Memory Care Facility? I can't take her home for Hospice, because I have to work during the day and she must be watched 24/7. I've read that Hospice can only stay so many hours per day and I run my own business and can't be with her around the clock. I have no one to help me.

I know this sounds a bit snotty, but why not wait and see what her doctors advise? Then, if they suggest something that sounds wrong to you, you can ask them specifically how their proposed course of treatment serves your mother's best interests. They would have to explain and justify their recommendation.

Trying to anticipate every scenario and decide in advance what to do must be upsetting in itself - you'll be mentally running through all kinds of frightening possibilities that will never, ever happen. Of course patience is easier counselled than practised, but her test results shouldn't be long - spend the time reading to her or holding her hand. Big hug to you, this is very rough on you.

My situation is a bit different with an older parent (87) and a heart attack. Hospital ER cardiologist not familiar with our situation was pushing for open heart surgery to remedy blocked arteries. I knew my mother could not handle the anesthesia & has refused other procedures requiring that, due to how it affects her cognitive skills, not to mention the extensive rehab. Not understanding what was being proposed , she had said Ok. I raised questions & thank goodness her own cardiologist stepped in to consult and followed through with less invasive stents/angioplasty. He was fully compassionate of our situation with dementia along with other health issues. Instead of the either do nothing or extreme surgery, my mother received treatment on her terms and with better quality of life, even if it won't be as prolonged as with the open heart surgery.

Once you have the diagnosis you will better be able to advocate for your LO. You can't make decisions when you don't know what the options are. It sounds like you are a doing a good job as advocate. I wish you and your LO well.

My dad (who didn't have dementia but did have terminal lung cancer) had a mass the size of a golf ball on his side. We had a surgeon look at it and he said we needed to have it removed, even though Dad was 10 months into his expected 12 months of predicted time left. I felt pressure to have it done, so he had it removed as an outpatient. It was metastasized lung cancer.

Would I do it again, knowing what I know now? No. I would have left it and sought palliative care. My dad did have hospice in the last month of his life. He passed away about two months after having the mass removed. Surgeons pressure you to do what they do - operate. You have to weigh whether it's right for your loved one in the fullness of their life and their situation. Only you and your family can answer that question.

My mother, who didn't have Alzheimer's but had some mild memory issues, had tremendous pain. She went for years before she qualified for hospice, but she'd say to me from time to time, "Can't you just give me a little black pill?" She wasn't depressed except that she was so tired of pain and a poor quality of life even though everything possible was being done.

Eventually, advanced cancer qualified her for hospice and they were able to keep her pain free for her last weeks. Those were good weeks in many ways because she was physically comfortable. Since my dad had died by then, her emotional pain was likely part of her letting go. It was time.
Carol

I can only tell you what my Mom would choose, and I for her if she were in a similar situation. I have been caring for my Mom with AD for more than three years now. Each day, there has been a progression. She is now entering the later stages of the disease. When I first arrived we would sit on the porch on summer evenings watching American Idol videos on YouTube. One night she asked me what was wrong with her. I explained the disease to her and she told me "I do not want to live like this if it will not get better, I would rather be dead. Would you help me? I will tell you how to do it."

No question, if she were to develop some sort of a condition of any sort, it would be palliative care and hospice.

I'm so sorry. Sixty three isn't very old so that makes this doubly hard on you.
Still, with all of the other health issues - especially dementia - I'd echo the feeling of others that talks with the palliative care people at the hospital as well as hospice are in order.

I've seen what anesthesia can do in such circumstances and the results can be devastating so I may be biased, but I also have a good feeling about what I'd want if I were in your mother's shoes. I'd choose hospice.

Much goes to what your mother would have wanted if she'd been presented with this scenario when she was healthy. Would she have said, "Oh, I'd choose surgery anyway," or would she have said, "There's no way I'd want to live that way." You can't know for sure, of course, but you may have a feel for what she'd have thought.

The other consideration, of course, is how strong of a case the doctor can make for improvement vs. risk of the surgery.

Still, in the end, hospice would be my choice.

Please let us know what you decide and how you both are doing.
Carol

This sounds a lot like the situation involving my wife's mom. The large fluid filled mass turned out to be nonmalignant cancer and a cyst. She went through surgery as a last ditch effort to save her life, and it worked. She's still alive. It's hard to say how much the anesthesia impacted her dementia but safe to say it probably didn't make things better. Balacing the outcome we have from what would have been a very painful death, we're glad this was the path taken for her. MIL enjoys our visits and company each day. Life is a precious gift from God. May He grant wisdom in the midst of these very difficult decisions in how to manage it and especially the end of it!

I highly recommend a consultation with the palliative care doctor. We had a great experience. Bring a list of questions. I went through every part of my mother's care, medications, treatment in an emergency situation (like if she had a cut or broken bone), DNR, etc. Palliative care helps the whole family. Good luck.

LO is loved one, I believe.

I don't know what LO is, but if she were in my care, I would do only what would relieve pain. Anesthesia only makes dementia worse. I know this because I used to work at a hospital, reading records. It always told how people were worse after anesthesia, some never returning to normal. Since she is already bad, I would take her to hospice where they manage pain very well. I hope for your sake she goes painlessly and quickly! Prayers coming your way and for your LO too.

This is a very good question. The doctors will be able to help you answer it when they know what the mass is. It may be something simple or something worse. However, surgery is always a concern when someone is in your LO's condition. I would discuss with the doctors about what the outcome could be. If together you don't feel surgery is the best way to go, you may want to see if she could qualify for hospice. Hospice can help you keep your LO comfortable as she lives out her life. Most areas have several companies -- some good, some not so good -- that provide hospice care. You may want to shop for the one that comes with the best recommendations and fits your LO's circumstances. Good thoughts coming your way.