Dad with dementia and now colon cancer won't have surgery without step-mom with dementia staying with him. Any advice?

Thank you all for the great feedback!! Just a quick update...my dad had the surgery yesterday and all went well! He had a robotic laparoscopic right hemicolectomy. I hired a home health care service and had them start by being there for my dad for his pre-prep which is similar to that of a colonoscopy. I was worried he would be weak from the clear liquid diet and he was required to take a shower with special anti bacterial soap and wipes which was also a major concern as I didn't want him to fall in the shower. It went surprisingly very well!! Because the service was there when my dad was still home it made them both more comfortable with the service (they are staying with his wife 24/7 while he's in the hospital). Hopefully he'll be back home in a few days and then I tackle the next crisis because I know there will be more. Thanks again everyone!!

We hired someone to stay with my mother in law in the hospital, 24-7, when she was having surgery because of her dementia. Perhaps that would work for you - and your stepmom and dad could just assume she was part of the hospital staff. Ask the hospital for help doing this. They should welcome it since it will take some of the burden off them.

Seems you have multiple issues you are dealing with.
1 - Dad and Step-mom do not have a good plan for emergencies - especially when Dad is the one with the emergency.
2 - Step-mom is getting beyond the care of Dad and AL
3 - Dad is having a hard time realizing Step-mom's worsening condition.
4 - Dad may be having a hard time understanding the seriousness of his own condition.

All of these issues point to the fact that they may need to transition to more care by others.

Short term, you can have step-mom there for procedure and afterwards.

Please, please, PLEASE - as a RN - do not let step-mom stay overnight with dad. He won't be in a position to care for step-mom. Step-mom will not get a good night's sleep. She will most likely end up having meltdown: bad for dad, bad for staff, bad for family and bad for step-mom. I have seen it too many times.

See if family will take turns caring for step-mom while dad is in hospital. If you don't have enough volunteer helpers, then get paid help. Plan for the longer stay and be pleasantly surprised when/if it ends up a shorter stay.

When dad comes home, plan to have hired staff for about a week. Then, have a reassessment to see if step-mom and dad need to transition to more care.

Best wishes!

Hi JustDucky00. I had a similar issue, minus the dementia in my father. He had colon cancer and needed surgery. My mother has dementia and wanted to drive herself to the hospital and be with him 24/7 (she is not allowed to drive). My mother was suspicious of the doctors and even though they explained everything to her, she did not remember any of the information, nor did she remember why he was in the hospital. She then would badger the nurses, doctors, and my brother and I, claiming that no one was telling her what was going on. She was disruptive the entire time. My advice is to ask the ALF if there is a way to up the level of service for your mom while your dad is in the hospital. Bring her to the hospital for visits and tell her that the hospital has visiting hours that need to be respected or a similar excuse. She hopefully will not remember what the doctor said about staying over. If you need to hire someone to be with your mom, what worked for me is telling my mom that "Jane" came highly recommended by .... "a lot of my friends and a lot of my doctors." You MUST preserve yourself. PS, my dad came through the surgery, at 88, with flying colors. Hang in there :)

It looks like you have come up with a good plan. Pace yourself, but as long as dad is handling his recuperation well, take this time to focus on your step-mom's needs. Be there to evaluate the new caregivers for her and smooth the way for them to help her. Don't jump into outside care for her "cold turkey." The more she can connect with them (with you present) the better for the long-haul. Last, my parents were co-dependent; dad had a difficult complicated medical situation and mom was a retired nurse but mom definitely had more memory issues so they depended on one another and were successful at it for years. They both aged into their late 80s. When dad fell and broke his hip, my mom stayed with him in the hospital the whole time. When he went to rehab, she returned home. When he an an emergency colon resection, she and I knew she couldn't stay with him. She stayed with me (I was closer to the city where the hospital was) and I took her in to see him each day. This surgery of dad's was the catalyst for bringing outside help into the home. They weren't open to it at first. It was a process. Eventually, he had to live in a nursing home and she stayed in community. This process was difficult, but what choice does one have? The choice you have is how and when to facilitate that transition with your parents. For you, time will tell, but your dad's illness can be the catalyst that will present the opportunity to find that assistance that each parent needs while respecting their love and the positive aspects of their co-dependency. On another note, when I had to step in, it dawned on me through trial and error that I had to keep supplies on me like one would do if they had a baby or toddler. My bag included disposable gloves, depends, wipes, gate belt, spare towel, a couple plastic bags, medical information, a book/knitting, small water bottles, and snacks. I eventually added an attractive reusable adult bib that stowed in a tiny stuff sack. I kept a couple lap throws, garbage bag, beach towel and small pillow in my car. Instead of the stroller (for baby) I had a beautiful lightweight (22 pound) wheelchair and occasionally a walker. Hopefully, your dad's surgery will be minimal and he'll bounce right back to health. Take care.

OMG. My heart so goes out to you. And let me guess: you have no one else to step up /in and help? You are going to have to be strong and generate some boundaries for your own sanity. You can't possibly look after two people with dementia on an outside adventure, let alone a medical one where it is stressful for all and you need to be able to focus, not be distracted. The MD sounds like he needs to be replaced for that one comment alone. Then again, that's probably unfair to say if he only is seeing stepmom at her best within her role in the room. If this happens, what about letting mom be in the (hospital room) warning staff ahead of time of this plan, and having a nurse or aide stay with them both IN the hospital? It sounds like funds aren't a big issue? I must say I'm not thrilled about the scare tactics and telling someone if you don't do it, there will be a painful death...is this surgery going to really take care of the problem? Because if it's just going to buy time and create this much of a problem, would it be better to call in hospice? Hopefully they will work toward the goal of no pain. And BTW, I wouldn't be so quick to discount the thoughts of things being taken. It happens and the staff have keys, and they know when people aren't home...

The doctor overstepped by promising her that she could stay in hospital with your dad. It is a very bad idea to have your step mother someplace where you know she will only get in the way. Do not go along with that ridiculous plan.

Colon cancer surgery is a big surgery. Hope for the best but prepare for the worst i.e. prepare for your dad to have complications. Get your father evaluated for home hospice. Your dad is never going to make it two weeks in hospital without getting more confused/delirious. The anesthesia alone will make his dementia worse. He may land in the ICU.

Step back and look at the big picture realistically. Hire whatever help step mom needs at home, and prepare yourself to stay with your dad in hospital. Most hospitals allow one person to stay with a patient overnight. That person absolutely should NOT be your step mother.

The best you can do is fudge it! She comes with him (with you too) up until he goes off for surgery. Distract her with bathroom, get a bite to eat, something to refocus her on something else. If it ends up being the simple surgery, bring her next day (even with minimal surgery, he'll likely be "out of it") for a visit, and again, distract her after a short visit. He should have enough sedation to keep him comfy, but also keep him more or less confined. The more intensive surgery poses a longer time to deal with all this, but one day at a time. When he does question where she is when he is more lucid, excuses, excuses, excuses! She is in the bathroom, she's showering, she's eating, etc. If/when he is allowed meals, join him with her. Let them spend some time together. Pain meds will be needed, which should make him sleepy, so he can be alone for periods of time. Hopefully the nursing staff will be aware of his issues and be able to keep him sedated and calm when you and his wife are not there! Doctors are often woefully ignorant about dementia.

So, he does want the surgery and has moderate dementia - hopefully you and the doc also understand that anesthesia can result in regression of the dementia. Sometimes it reverts back to previous level, sometimes there may be only a little improvement. No way to know until after the fact, and it could take months. This can also impact his recovery (if he can't do or cope with the post-surgical care needed!) Hopefully this won't be the case.

Hiring someone to watch over her while he has surgery and is post-op will have to be done. Most AL is not set up to monitor/cater to someone with dementia, esp if they are prone to wandering. Hoping you can find the right people who can deal with dementia - it isn't as simple as just hiring an aide. They need to know how to best manage someone with dementia. If she is okay with you, perhaps you can stay with her or take her home with you for periods of the day, reducing the need for aides. Given that he will likely need more post-op care after he is discharged, you'll likely want to have the aides continue after he returns back to the AL. I don't envy you - this is a tough one!

Also, agreed that very often dementia results in suspicions and accusations of stealing. That was a subtle sign that I missed (our mother lived alone) as I wasn't aware of the signs at that time. I was perplexed as to why she would accuse my OB of stealing her tweezers when he came to visit/stay one time. Accusing another of stealing other stuff *could* have been real, but in retrospect it is more than likely she misplaced whatever it was she thought was taken! Certainly was true for the tweezers - I bought her another and when cleaning out her condo after move to MC, I found at least 3 in the bathroom and about 6 more in a dresser drawer!!!

Thank you all for the feedback!! In response to some of the questions...my dad is 80 (his wife 77) and he has moderate dementia. The doctor says the cancer hasn't spread to his organs and seems confident there will be minimal risk but no guarantees. My dad does want the surgery because he is in pain - I believe he was lashing out because he's scared?! I have a meeting set up with a home health service at my dad's place tomorrow to hopefully have someone watch over my stepmom while my dad's at the hospital...mainly at night when the AL staff is minimal. The surgeon thinks it would be a good idea to have her there after surgery to help his memory but she will not be staying overnight! Here's hoping all goes well!

I’m wondering if you could pull off a sort of a “switcheroo”?
Mom goes to the hospital, kisses Dad good luck as he’s wheeled off to surgery. All good. Then someone takes Mom back home. Dad has his surgery, mission accomplished. He might be mad, but the deed is done.

I think the doctor needs a reality check. Should have never said this without finding out Moms condition. Really, he isn't the one who is going to have to watch her. The Staff is. The DON needs to know this is not a good idea. Then she can tell Dad, sorry we don't have the staff to care for ur wife.

My step father always wants his wife there too, however the hospital said no, as she wanders and cannot find her way back to the room. The admin said she could no longer stay there, as she is an insurance risk. I happen to agree, so the last time he was in, I had her stay with me for two nights. It went well, however, she does not have incontinence issues, that I could not deal with.

When he got out, she returned to AL with him.

Oh my. This is quite the situation!

I don't think it is at all appropriate for your step-mom to stay in your dad's room with him at the hospital. She'd be another patient and that doesn't seem like it would fly.

How old is your dad? How bad is his dementia?

I would lay down the law. No, stepmom can not come to the hospital with you. End of story.

Full time care will be secured to take care of her, as even if AL was fully staffed sounds like she is above and beyond their level of care. Hmm, maybe she should go in to a nursing home for 2 weeks for respite care while your dad is in the hospital?

It's common for people with dementia to think people are stealing from them.

If your dad doesn't get the surgery, how long do they give him to live? Is he willing to die over this? I can't imagine yes but who knows. Is he cognizant enough to make such a decision?

Good luck.

Sometimes doctors are not the best people to ask about this kind of thing.  Not their area of expertise and they have not experienced the practical ins and outs. Do they have a senior nurse, social worker, someone who has dealt with this kind of thing often in the course of their work? Could you talk to them? Frankly, if your mom was in dad's room, the nursing staff would have to deal with both of them or you or a hired carer would have to be there at all times.