Mom dependent on Dad for some care and meals, now Dad has terminal liver cancer. Still in apartment together. How to care for both of them?

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Mom dependent on Dad for some care and meals, now Dad has terminal liver cancer. Still in apartment together. How to care for both of them?

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Mom has been in long term skilled nursing before and has gotten strong enough to go home. Her mind is still kinda sharp, and compared to other patients she wasn’t ready for a final placement. On the other hand she rejects idea of assisted living right out of hand. I’m worried about when my Dad needs hospitalization or even an overnight in the hospital she can’t be left alone. Dad makes all her meals, gets her meds, and whatever little chores she gives him. But now Dad will need help, and I want to be there for him. I can’t be a full time caregiver (tried it ended up in the hospital). They have around 5 hours a week of homemakers.
So far Dad is not showing any symptoms beyond weight loss of his liver cancer, but I can see the toll of caregiving my Mom is taking on him. He says he will consider assisted living when he really “needs” it, but I’m afraid by then they would not be medically accepted.
We have a palliative care nurse and social worker who visit monthly, but of course my parents are charming and don’t need any help.
I want my parents to have as much independence as they want, but I’m afraid my Dad is going to need help soon, and my Mom will be in denial until it’s too late. Getting him on home hospice will not be a problem, except that he probably will require more daily caregiving than they provide, and who will take care of my Mom?

Care Decisions Parents Senior Housing

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Does your mother have cognitive issues?

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Not really, but she is extremely hard of hearing, and also taking hydrocodone for arthritis pain in her shoulder. She has always needed social stimulation (which is why she got better when she was in skilled nursing), but her stubbornness to go to assisted living results in she and my Dad living in a nice, but isolated apartment.

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OldMol, do you think that your father just can't come to terms with his situation at this time?   A terminal diagnosis is a real challenge for anyone.   Perhaps he needs help in acclimating himself to it so that he can address changes.

I've been a firm believer of getting assistance from those who've gone through the experience, which is why I suggest that Gilda's Club members be brought in to provide, if nothing more, mental respite care.    They've been through the cancer journey, either themselves or with their families and/or friends.    They can provide support through their family activities, and help newly diagnosed people help to adapt.

And I would go to them in a heartbeat before I even considered social workers.   Just my opinion though.

I did go to one meeting and was just overwhelmed by the emotional agony faced by those newly diagnosed.   They also had difficulty comprehending the diagnosis, especially for the more aggressive cancers.

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Thanks for replying! I confess I never thought about contacting Gilda’s Club...I guess I assumed it would be more helpful to younger cancer patients. I will look up more information about them...we are very fortunate that a Gilda’s Club is in our area. My Dad and I have talked about his diagnosis several times. He lost his best friend several years ago to cancer, and I think he knows what is store for him. As his POA, we have had the talk about his end of life decisions...basically he doesn’t want to suffer. We have also talked about having some spiritual counseling, but he is not ready yet. I know it’s not possible, but I just wish my Mom would discuss his health condition with him besides whispering to me “he doesn’t even look like he has cancer”.

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Have you talked with your Dad's doctor about is prognosis? Preferably in front of both Mum and Dad. Ask the doctor straight out, how long does Dad have and how quickly will he decline? I think all three of you need a wake up call. Perhaps the doctor too.

I am happy to read that you have some boundaries in place, but being there 3 days a week is giving them a false sense of independence. What happens if you get the flu and cannot go to them for a week? You are correct you cannot provide care to 2 ailing seniors, especially when your own health is put at risk.

A friends bil was diagnosed with Liver Cancer, given 3-4 months to live and died 2 weeks later, he was in his late 50's. My Mum's best friend had it and took longer to die, but was quickly debilitated by the disease. She was in her early 50's and depended on her husband who was also in his 50's for care.

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Thanks for replying...my Dad was diagnosed earlier this year with primary liver cancer stage 4. The consulting surgeon told him without surgery (which Dad refused) he would begin to show symptoms by Christmas. Since then, his health has been very stable, and his oncologist encourages a “wait and see” attitude. It is incredibly frustrating that although I’m happy that Dad is doing well, the oncologist doesn’t want to make any prognosis to my Dad...and therefore my advanced planning is stopped in it’s tracks. My Mom was furious when a palliative care nurse tried to give her information on liver cancer...she replied she doesn’t want to know that s**t, and that we could all die tomorrow.

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"Dad, I know that you are reluctant to move before you think you and mom are "ready". But the thing is, your health is only going to get worse, and you aren't going to be in control of how fast that happens. The hard truth is that you may decline quickly, need to be in a nursing home overnight, which leaves mom alone. How the heck do you expect me to make a good plan for BOTH of you if you, the reasonable one, won't work with me?

You need to understand that if you are in a NH and mom is at home alone, I'm going to have to abandon one of you. Please don't make me have to make that choice."

So, of course, you COULD kill yourself running between the NH where dad is dying and running to mom's house where she isn't getting adequate care, is refusing to eat, bathe or cooperate in any way and is wailing over how awful her life is. Believe me, we've seen LOTS of folks on this board try to do just that.

Please don't even think about trying that.

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Thanks for replying...I am going to use our social worker to help me put things into a stark perspective after Christmas. I want to give them every chance to live out their lives as they choose, but they need to clearly understand that their choices may be taken away if a decision waits for a medical crisis.

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There was a couple in my mom's assisted living place. The woman helped to take care of her husband until he died, but she did not have to cook and clean or attend to every need of her husband's. They were both usually in their room, but she could leave him to the care givers to go work on a puzzle or watch a movie in the other rooms. After he died she is now much more active in the facility, out in the common room or kitchen all the time interacting with others. I wondered about how my parents would have done in that situation if my dad had lived long enough to go to assisted living with my mom. I do think they would have fought the idea of it, as most people would, but it really seems the only answer here. It might be good for you to begin the search for a facility that would take both of them and convince them to at least look into it with you. When it gets too difficult for your dad he might give in.

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Dad and I have actually toured a facility that they can afford and close to their current place. We did it while my Mom was still in skilled nursing. The facility was pretty nice, but in contrast to where they are now very small. My Mom refused outright to even see it or consider it. Dad did say at one point that he would “know” when it was time to move there, but my fear is that it will be too late for him to be medically stable enough to be approved.

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Oldmol, you sound like you're on the verge of burnout right now, trying to solve an insoluble problem.

If you go down, who is going to advocate for your parents? It behooves you to conserve your energies for what is important.

Is dad on hospice? Can you arrange a "needs assessment" by an agency or the local Area Agency on Aging while YOU are present to counteract your parents' charm and showtiming?

Sadly, many folks here with uncooperative elders have found that the only way through this caregiving maze is to wait for a fall or serious illness that la is an elder in the hospital and leads to placement.

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Thanks for the reply! My parents are involved with our Area Agency on Aging, and get 4-5 hours of housekeeping help each week. They are both in our hospitals’s palliative care program. All the professionals I’ve dealt with have been awesome and really helpful, it’s just my parents denial of needing even more care.

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I cant blame him! But you need to make it clear to him that you lack the capacity to respond to their every emergency.

The choice here is stark. Your father needs to balance the thought that mom will be left without care and support when he becomes ill because it's just not your job to race along icy roads to get to her some dark and stormy night.

I did that once. Nearly got killed by a truck spinning out on ice in front of me.

Sat mom down and said "I can't do this anymore". And meant it.

Many eventualities can be planned for and this is one of them.

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Thanks for the reply! I ended up in the hospital last February for 3 days after a panic attack. Since then, I have tried to maintain a schedule of Mon, Wed, Fri and Dr appointment days to be physically there. I am just looking into the future and wondering how on earth I can deal with 2 parents needing more help than I can give them...both emotionally and physically.

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I would talk to dad alone, convince him that he needs to be the hero, outlining the care that your mother will need and that there is no one to provide the 24/7 care she requires.

If he says he is going to AL, she will follow, maybe not the same day, but very soon afterwards. Everyone needs to band together and, be on the same page.

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I was in a similar situation with my mother and stepdad. SD still resists the idea of assisted living, though Mom wants to make the move. For many years, Mom was the one who was taking care of SD and he thought that was just fine, even though it was taking a terrible toll on her, physically and emotionally. Then Mom developed Parkinsonism and her ability to care for him dropped dramatically. SD still doesn't want to move, saying they can make do with occasional caregivers and their Life Alert pendants. But Mom is saying, "Yes, NOW is the time." She has put down a deposit at an ALF she likes and they are awaiting an open apartment.

I encouraged this decision by asking Mom and SD, "What if . . . ?" SD, what are you going to do when Mom has a fall and winds up in the hospital and physical therapy? What's going to happen when SD has another stroke and Mom (who sleeps in a different room) doesn't find him till hours later? And so on. Presenting them with the worst-case scenarios helped Mom understand the reality and urgency of their situation.

In your case, it would be, "How is Dad going to stay as strong as possible for as long as possible if he has to take care of Mom all the time?" "What is Mom going to do if Dad takes a sudden, bad turn for the worse?" Getting into an ALF is not like checking into a hotel. You've got to go through all the admission stages.

Good luck. I know you will rest better if your parents are in a community where they can get the additional care they need. But if they refuse to move, there is nothing you can do about it. This is ultimately their choice and you will have to learn to "roll with it." That's a term I heard on this forum from my own posts and I love it. It helps me realize that I am not in control of my mom's life and well-being, though it's not like I haven't tried! LOL

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Thanks so much for your reply...I hope your Mom and SD get moved in soon!

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It sounds as though your dad is the more reasonable of your parents, and that he wants to care for mom.

Can you and his doctors put it to him that for HER sake, he needs to go to AL now so that there are folks around to care for mom if he has an emergency?

You need to make this about mom's needs and yours so that dad doesn't feel like he is wimping out.

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Thanks for your reply...Dad is certainly the more reasonable parent and I want him to get all the care he needs. At the moment he says he doesn’t want to listen to my Mom complain and pout about an assisted living apartment!

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Mom dependent on Dad for some care and meals, now Dad has terminal liver cancer. Still in apartment together. How to care for both of them?

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