How to live with the dying
December 16, 2016 2:36 PM   Subscribe

My father was diagnosed with an aggressive type of cancer earlier in the year and things were going pretty well until about a month ago. Now everything has taken a turn for what I assume is the worst (what I assume is the end) and I'm really struggling with coping. I'm an only child and I've become the main caregiver/contact person and I am, already, utterly exhausted. How am I supposed to survive until my father (eventually) dies? What if I don't want to be his caregiver?

Before November, my dad was perfectly fine managing his appointments and treatments on his own, but in the past few weeks I've been thrust into arranging everything. I'm in charge of making sure he gets all of his medications, making sure he's eating, etc. and I already feel *exhausted*. There's a reason why I never went into health care, I just do not have the personality/temperament for ANY of it. I have a small family and there's not much support from other people coming in. My mother (father's wife) is not capable of caring for him at all, so everything is falling on me.

We're in Alberta and we have provincial home care coming to set certain things up and show me how to do things, but I just... can't do this in the long-term. I don't think he's at the point where he could go into some sort of out of home hospice care, but the doctors seem to want to keep him at home for as long as possible. Which, I get... but I can't quit my job to take care of him.

I've had a palliative care doctor suggest to me that I just take a leave of absence from work and go on EI and then a home health care nurse smugly judged me for not "advocating" for him enough, in regards to care. I'm sorry, but excuse me? I don't work in a "booming" field and there's a fucking recession going on in my province, the unemployment rate is the highest it's ever been in 20 years. I'm only in my late-20s, I'm still getting started in my career. I just can't fucking quit it and go on EI!!! I'm not a healthcare worker that can get a job at the snap of my fingers! My work is supportive and I'm able to take time off here and there as necessary, but I don't want to quit. My job is the only respite I have from what's going on, but now I have to lose that too? How do I handle these judgements from medical professionals? Am I a terrible daughter because I'm not strong enough to be a caregiver? What other options exist beyond ME being the sole caregiver?
posted by anonymous to Health & Fitness (20 answers total) 13 users marked this as a favorite
I don't have options but want to send you a big hug and also a "fuck you" to that nurse. Also I'm willing to bet that you are female, because no one EVER scolds a man to quit his job. So, hugs.
posted by cyndigo at 2:56 PM on December 16, 2016 [91 favorites]

Do you live at home? The first thing Im thinking is you need to not be living at home if you currently do. You need a place you can go home to so that you are not on duty 24/7. Then you figure out what amount of time you are able to give and what tasks you are willing to take on and you lay it out to anyone that needs that information. Thats all you can do, period.
posted by WalkerWestridge at 2:58 PM on December 16, 2016

Oh, and by "thats all you can do period" I mean thats what you tell any offiscious health care workers that try to guilt trip you.
posted by WalkerWestridge at 3:01 PM on December 16, 2016

There's a program called COMPASS Caring for the Caregiver based out of Edmonton. You might find support and resources through them. They may have online resources. Caregiving can be exhausting mentally, emotionally and physically, try your best to take care of yourself as you ago through this.

Looking at the caregiver sections these comments popped up:

“I felt safe to discuss my issues without being ‘judged’ or ‘fixed’.”

“Being able to share my problems and frustrations with other caregivers was the most meaningful part of the COMPASS program, especially because [now I know] that there are others having the same problem.”
posted by jennstra at 3:14 PM on December 16, 2016 [3 favorites]

I just looked at the COMPASS site again. The broader name is Caregivers Alberta.
posted by jennstra at 3:20 PM on December 16, 2016

I don't have much advice to give, but the exact same thing happened to me. Only child and very similar circumstances. I was living in a different country and was expected by certain members of family to quit everything and move home. I didn't, but I flew over and back and was under extreme pressure to finish my life and be a full-time caregiver. I still struggle with the guilt sometimes but I think I did the right thing. In the end my mother was in a home/hospice care in any case for her last 2 months (they were so good to her, far better than what I could have done. And I could be with her as much as I could around that). It was an impossible situation and for only children it is just awful. I was able to be with her every day for those two months but she needed professional care (she had a brain tumour) despite my family thinking it would be best if I looked after her by myself at home. I was your age also, just a few years ago. The only thing I can advise is to try to do what I did and balance your father's needs with yours, and not to give up your life while also being there for him. I had decided that I would come home to be with my mother for her last three months, when it came to that, but I couldn't face moving home for a year to look after her and be left with no family and no job and no place to live, basically nothing, after. I feel your pain. Sorry I cannot advise anything more. Look for support as much as you can around you. I cried to a palliative care nurse who I'd never seen before. She was more understanding than my mother's family. Tell neighbours/friends/family - support will be out there somewhere. Are there cancer/hospice counsellors in your area? It would help to speak to somebody, even just for support for yourself. I'm really sorry. I know what it's like. I was expected to drop everything I'd worked for too. I thought back then, and I still do, that balance is the key. You can do a lot for someone without giving up EVERYTHING for them.
posted by cornflakegirl at 3:32 PM on December 16, 2016 [9 favorites]

I'm an only child as well and was in a similar (but somewhat less onerous) situation a couple of years ago. Please know that you are NOT a terrible daughter -- your question shows that the complete opposite is true. In my case the person who was dying himself suggested that I was a terrible daughter, and when you're already having a difficult time dealing with the illness itself, an added layer of unjustified guilt can just break you. Please take care of yourself in addition to caring so deeply for your father.
posted by as_night_falls at 4:11 PM on December 16, 2016 [2 favorites]

Dear OP, I'm so sorry you're in this situation. My out-of-state dad lived alone until recently. About a year ago an emergency room physician called me as his only medical contact to find out if my dad had anyone at home to help him with changing a bandage and then yelled at me when I explained that he lived alone and said, literally, "He's in his 80s. Why isn't he with you?" When I went to visit him shortly afterward, two other people (one a social worker, another a total stranger) let me know what a terrible daughter I was because I refuse to let my dad come and live with me. Those judgmental strangers you have been dealing with don't know you, don't know your dad, and don't know the situation. It's not up to them to decide what is best for you.

My dad's getting weekly home-hospice visits. I'm pretty sure his meds get scrambled. I can't fix that, so I have accepted that. I'm in the US, not Canada, so I don't know what resources are available to your family. There is something called Alberta Health Advocates , which may or may not be helpful.

If it were me, I'd tell all your dad's doctors exactly what you posted here. That neither your dad's wife nor you are able to be his caretakers. That you are unable to quit your job. In the states, at least, usually there's a social worker or someone (usually overloaded) who is supposed to help you navigate the system.

The best possible help you can be to your dad as he is dying is to act as his loving daughter rather than as his resentful, overwhelmed, exhausted caretaker. Naturally the system wants you to be his caretaker because that's cheaper and easier for the system. But that's horrible for you and horrible for your dad, ultimately. It will fuck up your life and your relationship with him. So please don't feel guilty for recognising your limits. If some folks don't want to hear the truth, that's their problem. Strongly advocate for yourself and your dad by pushing back.

Carry a notebook with you to meeting and/or make notes during phone calls and just draw that line in the sand. Starting Monday, call up everyone you can and ask how Alberta cares for dying adults who have no in-home caretakers available. Because that is your dad's situation. He's a dying man who has no in-home caretakers available. You cannot do it. His wife cannot do it. This is not a unique experience. This has happened before. So how does the health and social services structure help dying seniors in those situations?

That's the question to pursue. If you need to, practice asking that question and as well as telling people your version of, "That's not possible," "I'm not available," or "My health doesn't allow it." Say it however you need to say it, but start saying no immediately. You can't save your dad, and you have to protect yourself as well as your relationship with your dad. That doesn't make you a terrible daughter; that makes you a realistic and emotionally healthy daughter, which is a good thing. Best of luck, OP. Hang in there!
posted by Bella Donna at 4:48 PM on December 16, 2016 [12 favorites]

Also, it's okay to change your mind. So if you've already felt forced to agree to things you can't do, that's fine. Just call those folks back and say that you are no longer able to meet those commitments or whatever. Sometimes we agree to unrealistic things under pressure. It's okay, once we've realised that, to say hey folks, now that I've had time to reflect on the situation, I've realised X solution won't work. Also, feel free to message me if you want to vent more privately.
posted by Bella Donna at 4:54 PM on December 16, 2016

To be clear, I am not saying that you are in any way obligated to miss time from your job, but in case you end up having to do so, you should know the following about EI. You may be eligible for Compassionate Care Benefits under the EI system, which you can get without quitting your job or even taking a total leave of absence.
From this manual:
"Compassionate Care Benefits may be paid up to a maximum of 26 weeks to a major attachment claimant who has to be absent from work to provide care or support to a gravely ill family member or a person who considers the claimant to be like a family member and is at risk of dying within 26 weeks. The benefit period within which these benefits may be paid will be 52 weeks. Unemployed persons on EI can also apply for this type of benefit.
To be eligible for Compassionate Care Benefits a claimant must apply and show that:
• his or her regular weekly earnings from work have decreased by more than 40 percent; and
• he or she has accumulated 600 insured hours in the last 52 weeks or since the start of his or her
last claim"
posted by lookoutbelow at 5:01 PM on December 16, 2016 [1 favorite]

You aren't a bad person at all. What does your dad say? What are his finances like? Would a weekday, daytime home healthcare worker be in the budget?
posted by cecic at 5:10 PM on December 16, 2016

I was in a similar position a couple of years ago. Only child, father with an aggressive form of cancer, mother with dementia, no other family or support in the province (BC). I also had a full-time job, a freelance business I was trying to build, a marriage that needed tending, and a 1.5 year old. In addition, my parents had no savings, real estate, or life insurance, for that matter. It was hard and I resented having to be the one in charge of everything.

Yeah, the doctor was probably referring to compassionate care leave. If you qualify and can afford it, do consider it. It will give you the time to do what needs to be done for your family while also giving you some time and space for self-care. Your employer has to protect your job while you're on leave and I've found that most employers and co-workers are accommodating about this kind of thing. Once the person dies, you're no longer eligible for compassionate care leave and in my case, I kept delaying taking leave and my father died on the first day of what was supposed to be a 4-6 week leave to care for him, myself, and get all of the logistics in order.

Talk to the social workers at the hospital and at your local hospice. They'll help you find and activate all the resources you and your family are entitled to. Tell them you're having a hard time. Ask for help and be as specific as possible about what you need.

Push to get your father in residential hospice as soon as possible. It's better for everyone. Trust me.

You'll get through this. It will be hard. You will be angry and sad and resentful and a mess for a while, but you'll do what you have to do and come out on the other side.
posted by subluxor at 6:50 PM on December 16, 2016 [1 favorite]

I was you last year. Like you, I'm an only child with not much family to help. My mom got sick with cancer and I went on EI (it was only 6 weeks then) to help out. We're in Ontario but like you I can't bring myself to do any healthcare.

I told the nurse flat out, that although I'm a woman I simply can't do this type of care. I said, "Imagine I'm a guy" because I felt like that. Maybe they expect women to do more hands on care with family members? This didn't change their attitude, though. Perhaps they are so used to doing this care, they can't imagine being icked by it.

In any case, we had 2 split hours of PSW help. One hour in the a.m. for breakfast and bathing. Then later on for general grooming, meal help. This was great as it left me to do shopping, chatting, support etc.

When we got to the later stage, the agency told me we're switching to palliative care and I got additional PSW hours. The Government would have paid for Palliative care at the hospital for 3 months but mom wanted to stay home as long as possible.

Are you getting any PSWs coming by daily for bathing, feeding etc? You need this help. If it gets much harder, you'll need to consider moving dad to palliative care.

If you're worried about your job, tell them that you simply can't jeopardize your employment. You can get 6 month compassionate leave but will work suffer?

When the nurse said you must advocate for dad, she means you must call around and get PSWs, get a palliative doctor to do home visits, find out what resources are available to you.

I'm sorry you're going through this. It's very hard.
posted by Coffeetyme at 6:57 PM on December 16, 2016 [2 favorites]

I am in the U.S. but I was thrust into this situation.

Do not do it. If you can get him into a nursing home, a good one, please do. I gave up a year of my life, and while I do not regret it, I was not prepared to give morphine and Haldol.

Finally, when I was at my wits end, a family member stepped in, who was richer but ignoring me doing it all and all of a sudden found a really nice home for him. So I had spent a year of my life caretaking for a lovely man, who had resources. I don't regret it, but I do regret being the patsy care-girl for other very rich family members.

In short: No you are not horrible. Do what is best for you.
posted by Marie Mon Dieu at 7:14 PM on December 16, 2016 [8 favorites]

My husband and I recently went through something similar. For several months he attempted to take on the caretaker role while also working a full-time job and it just about broke him while also really hurting his work. Please don't do this. We ended up moving the parent into a senior home with assistance and nurses on staff. We go and visit her weekly so that our time together is purely social, not work.

Also please do as much self-care as you can. There are support groups for caretakers and therapists who specialize in it. Remember to prioritize your health so you are well enough to be there for your dad. Eat well, do some exercise, get enough sleep every night.
posted by joan_holloway at 11:02 PM on December 16, 2016

Sorry for your anguish. I also was in a situation similar to yours, only child, one parent, terminal cancer, job etc, etc. I found help through the Canadian Cancer Society. They were very helpful and pointed me to lots of resources. While it was still a tough go, I felt that I had a team on my side. Best of luck, and remember it's OK to look after yourself.
posted by Zedcaster at 11:14 PM on December 16, 2016 [1 favorite]

I just wanted you to know that I went through this twice - once with each parent. It was stressful and difficult and the worst part by far was the guilt that doctors and others tried to lay at my feet. In my case it was not only that I was the breadwinner for my family and couldn't afford to take time off to be a caregiver but that my parents had always been abusive to me even in their older age and I just could not emotionally handle being their caregiver. I had to deal with all kinds of horrible judgments and nasty comments thrown at me by the doctors about how this is my responsibility and how can I do this to family. I just want you to know that whatever you decide you are not alone and you are not a terrible person because you do not want to or cannot take on this burden all by yourself.
posted by TestamentToGrace at 7:41 AM on December 17, 2016 [4 favorites]

How hard this is going to be depends a lot on how much money you have and how much money your parents have. You say your mother isn't capable of helping at all, which is scary if it means she herself is going to need care in the very near future -- is this emotional incapacity or physical/practical issues? -- but if she has any financial resources she is going to be crucial. Everything involving direct care that people are expecting you to do is something that can be hired out. it is just cripplingly expensive, is the problem. The interim period between when things start going irrevocably downhill and when hospice will take over is the very worst, but it is time-limited.

the doctors seem to want to keep him at home for as long as possible. this shouldn't be up to the doctors unless they're repeating what your dad told them. The one and only thing my dying parent consistently wanted was to die at home, in her own bed. It did make everything harder but I did not think it was negotiable and it is one of few things I can feel all right about when looking back at the worst year of my life. But I didn't go through the hell of making that happen because of pressure from outside, it was only the dying person's wishes that were a factor. if your dad can tell you what he wants (ideally, "don't quit your job for me, I need to know you'll be secure after I'm gone for my own peace of mind"), relatively free from the very strong pressures of trying to be a good and compliant patient, believe him. The worst thing is if he himself asks you for something you don't want to do. but if it's other people asking, fuck them. Decision-making about things like this is one thing that can't be hired out, if your mother is incapable (genuinely incapable, not just refusing to do it.)
posted by queenofbithynia at 12:04 PM on December 17, 2016

I'm sorry for what you are going through. Here are a few practical suggestions on the process I have watched many patients go through. It is not easy navigating the system, and there are not enough resources to make it what it should be. There are three options for palliative patients:

1) Hospice - When the time comes, I think this is the ideal option. I am not sure of the admission criteria of your local hospices but I suggest looking into these. There will be a waiting list. Your father's family doctor/palliative care doctor should be able to point you in the right direction. If you call local hospices directly they should also have a nurse who can provide information. Practically speaking - most patients enter a hospice when they reach the stage where they are spending most of the day in bed, are not taking much to eat or drink and are are expected to pass away in the next few weeks. Admission criteria varies however and some hospices are able to take patients earlier in the course of their illness. I have had patients spend several months in hospice care. Typically patients have their own room, there are often suites/beds that family member can stay in if they want to stay over. The staff are used to helping patients and families through the dying processes.

2) Hospital - patients who are not days from death, requiring IV pain medications are unlikely to be admitted to hospital. There is just not enough capacity in hospitals to offer long term hospice care. All across Canada patients spend days on stretchers in ER hallways waiting for beds to become available. This is the reality the doctors face and the reason for the push to keep people at home.

3) Home - For now you need all the supports you can get until your father is able to enter one of the above two options. He will qualify for palliative care benefits which includes home care coverage. For patients that need a lot of support home care workers can come in several times per day. Home care workers can take care of bathing, grooming, toileting, medications, feeding. The resources are also stretched thin - you will likely need to push strongly for increased supports/increased frequency of visits as his condition declines. If your father's finances allow you to hire personal support worker to fill in the gaps it would be ideal.
posted by 2whitehorse at 11:20 PM on December 17, 2016 [1 favorite]

What other options exist beyond ME being the sole caregiver?

Please look into home health care. 2whitehorse's answer is great.

Please, for your own sake, because you cannot do this by yourself and you SHOULD not have to.

You are not a terrible daughter! I've been in your shoes - dad died of lung cancer 6 months ago, and I did do the whole thing of dropping everything to come back and stay with him. (I only could do this because it was economically possible for me. My dad didn't want me to.) Even then, I was not his primary caregiver. We paid someone to care for him: feed him, help with the bathroom, give him his meds. I was the 'overseer' - which meant that I was there most of the time to keep him company, I did all his medical admin, kept track of his large numbers of daily medicines, made sure dad was getting the right kind of care at home, accompanying him to the hospital for treatment, being the main contact person for doctors etc. In my country we don't have hospices, but we could really have done with hospice during his final weeks.

But I never helped with my father's actual physical care, and he didn't want me to. By allowing his physical needs to be taken care of by paid staff, we were able, most of the time, to keep our relationship as dad-daughter, and not change it to patient-caretaker.

I didn't have any other job, just what I've told you, and it was exhausting. I spent every day in my dad's house and when I wasn't with him I called every single hour to speak to him or his carer.

It's so fucking hard, I'm sending you strength and positive vibes. You will get through this, and no matter what happens, know that you're a good daughter. PS: Please feel free to memail me anytime if you need to talk.
posted by Ziggy500 at 11:46 PM on December 17, 2016

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