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JustDucky00 Asked February 2020

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

My dad is having surgery for Colon Cancer next week. If they can do the surgery laparoscopically he will only be in the hospital 2-3 days. If they run into problems they will have to do open surgery and he would be in the hospital for 2 weeks or more. I have another dilemma .....my step mother also has dementia - more advanced than my dad. They both live in an Assisted Living facility. She wants to stay at the hospital with him and he wants her there too. They are codependent and my dad takes care of her more or less - basically he keeps her from getting lost. My dad said he wouldn't have the surgery unless she was able to stay with him. I told them I would make sure she was taken care of at assisted living even if we have to hire a service which will most likely be the case because they are understaffed at AL and she would need someone around overnight. I also told him if he didn't have the surgery he would die a painful death (doctor told him that too). And if they do open surgery he will be in there for 2 weeks or more and she can't stay there that long. She was a huge pain in the butt when I took her to his Colonoscopy (understatement). I was supposed to encourage my dad to drink his prep solution but had to walk her to the bathroom in the lobby area, which was far for her, when she needed to go. I had done that, brought her back to the room and she said she had to go again. Got half way down the hall and she didn't make it....luckily she wears a diaper because it was bad!! But I still had to hunt a fresh one down for her and get her taken care of and then get back to my dad. She was also going to follow him into the procedure room when they wheeled him away It's all so incredibly frustrating and they have no clue. The doctor told my dad and her that they would set up a bed for her and she could stay but he is utterly clueless on how bad she is although I called and talked to the nurse about it this morning. Just wondering if anyone has been through anything similar? One other issue, if I hire an outside source to help my step mother they will both be suspicious of whomever is in the apartment. They think staff at AL comes in and takes things as it is. Any advice? Thanks!

JustDucky00 Feb 2020
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!
my2cents Feb 2020
If you have any relatives to help, then I would ask them to be her caretaker on surgery day and tend to her one on one until he goes back to surgery. That will ease both of them to see each other until he is out of sight. Then designated caretaker can take her to 'lunch' and back to the facility. When dad comes around, just tell him she was very tired and nervous so she is with so-and-so and will come back. Then ask designated person to bring her to see him next morning. He either gets release right away (and they will be together) or he spends a few days and she can visit. Will make it easier on you to deal with him one on one. Agree...overnight for her is tooo much for everyone involved.
rovana Feb 2020
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.

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rocketjcat Feb 2020
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.
MaryKathleen Feb 2020
I love your devious mind.
againx100 Feb 2020
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.
jacobsonbob Feb 2020
Sometimes things get misplaced by staff--for example, clothes are taken to be laundered, but then not returned. We see this happening often in my mother's nursing home (even with items clearly labeled), so I imagine it might in an AL as well.
JoAnn29 Feb 2020
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.

NYDaughterInLaw Feb 2020
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.

Taarna Feb 2020
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!

JustDucky00 Feb 2020
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!!
hickoryhunt Feb 2020
Great news!
disgustedtoo Feb 2020
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!!!

Mrmoose Feb 2020
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 :)

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