I have always found this forum to be an invaluable wealth of information for me in my caregiving journey, and I'm hoping you can help my friend also.

She is 85, he is 91. She and her husband moved their son and daughter-in-law into the house years ago so they could be there for them in case care was needed. They built a beautiful 2nd floor for them to live in and took out a second mortgage to do it. The husband is now diagnosed with kidney cancer and is getting up at night every hour on the hour to go to the bathroom. He has to wake his wife up so she can unlock the bars that were put on the bed to prevent him from falling. She then has to accompany him to the bathroom and make sure he doesn't fall as balance was an issue even before the cancer and he has fallen a few times in the past.

My friend is so tired. She's not sure how much more of this she can take. Her wish is for him to live at home as long as possible. Because of his age, chemo and radiation are not an option. In addition, she's hiding her tears and her anguish from her son, daughter-in-law, and husband. He asks "What's wrong with me?" She tells him, "you'll be fine" and then, when she can get alone, she cries. They are going next week to see if he is a candidate for hospice. They do NOT have medicare because they rejected it in favor of a different insurance when they were 65. They also don't have Medicaid. They are 50% owners of the house with their son and daughter-in-law.

I personally think the son should take a night sleeping with his father so that his mom can get a good night's sleep. I'm starting to worry about her. Being sleep deprived at a time when she needs to make some hard decisions is not helping.

She has been with this man for 70 years (since she was 15). I cannot even imagine what that feels like.

What can I tell her?

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First, can they afford to hire a caregiver for overnight stays, even if only every other night?

Second, is it feasible to put a commode in the bedroom next to the bed? This would minimize the distance to go to reach the toilet.

Third, if the point was to have the son and DIL there for care, can't they take turns on night duty?

Fourth, does the configuration of the house allow for installation of rails from the bedroom to the bathroom so the wife doesn't have to provide support for the trips? I'm thinking of the larger rails that are typical in rehab and nursing facilities.

Fifth, where are the grab bars, or are there any at all? If not, they absolutely need to be in the bathroom, along the walls and other places where support is necessary.

The goal is to provide assistance so that the husband could possibly go to the bathroom by himself, if he has the strength. If not, try the commode next to the bed, but find a way to anchor it as these are tippable.

I don't have any suggestions on that; perhaps an engineer or construction person (such as WindyRidge) could offer suggestions.

Sixth, I'm not sure I agree with keeping his medical status from him, unless he has dementia and won't understand it. It's his life, his body, and he has a right to know. He also has the right to begin saying his goodbyes.

I also think it's not wise at all to keep the son and DIL in the dark. they SHOULD know - he's their father/FIL and they have that right.

And it might be that they would volunteer to help with the caregiving. After his death, I think there would be a lot of guilt on their part that they didn't know, and couldn't help. I wouldn't deprive them of that now when it's critical.

Seventh, even assuming that you can't get information from their oncologist, you could call or write, explain the situation, and ask if there are sources that can help. You could also ask her/him to speak with the wife privately, as well as the son and DIL privately, and brief them on the husband's condition.

Her/his staff may be able to contact the health insurer and determine if there are funds to support paid caregivers for the overnight tasks.

Eighth, I think if the family doesn't know and doesn't find out until he's ready for hospice, they might feel unduly left out and cut out of the helping process. I would be. I was also overwhelmed with guilt that I didn't participate more when I actually learned that my sister had reached a terminal stage. She had been telling us she was improving. Had I known, we could have provided more support for her. As it was, she struggled alone until her oncologist called me one day and provided the devastating news.

Ninth, consider taking the wife and/or the son and DIL to Gilda's Club meetings. In our area, the Club has cancer specific group meetings, music and other therapeutic sessions, and a strong support network. This whole family could benefit from that at this time.

Tenth, contact the CURE magazine and order a subscription for the family. Subs are free to people living with cancer as well as their caregivers. Also check the site online for kidney specific cancers, caregiving articles, etc. This magazine is a wealth of information.
Helpful Answer (1)

Christine, a few more thoughts occurred to me (this always happens after I think through an answer and post it!).

Are you geographically close to your friend? If so, could you take over meals, offer to do shopping, errands, things like that? My sister found that she really relied on these kinds of offers from her friends. It would also give your friend a chance to rest during the day.
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GardenArtist, I am overwhelmed by your thorough response, and I can't thank you enough for it. I'm going to discuss your suggestions with my friend. When she told me today she wasn't telling him, that didn't sit right with me, either. I think that's something the older generation has done because they thought it best, but I wouldn't want that done to me...or maybe I would if the diagnosis was really bad.... He does have dementia, and I'm not sure whether or not he's capable of understanding his condition. I am geographically close to my friend; thanks for reminding me to offer practical things.
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Hi. I'm sorry for the situation your is hard at times. A commode chair next to the bed would cut down on the steps at night. I don't know with his medical condition if his primary Doctor could prescribe anti-bladder spasm medications ( may not with kidney deterioration). I also would want to know what his wishes are if he should die....does the family want him to be a DNR ( do not recesitate). If he is end-stage hospice candidate maybe he could get catheter placement. Of course this is a last resort/comfort care measure and depending on his life expectancy may or not be ok with his doctor.
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Without Medicare or Medicaid, they will have a hard time paying even for Hospice. I agree with others who have suggested a night shift aide.
What can you do? Get her out of there for the day. Do lunch, hair, pedicures, a little shopping, something totally care free. Don't bring him up, try to divert her to pleasant ideas and places.
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