Need caregiving experiences/advice. I'm looking after my dad...

In My Humble Opinion
1

Hi, Dopers! Has anyone here given or received home care from a family member during/after a serious illness? I’m sure some have, and I’m new to this so I’m looking for some support. Not for myself, only, but also for my father who is home recovering from heart surgery.

Here’s what’s up. Dad is 70, set in his ways, a bit (heh) stubborn, retired and accustomed to living at home alone. For the past couple of decades, he’s had a very independent lifestyle. No kids at home, doing what he wants when he wants, you know…

I am his middle-aged daughter, now staying with him in his home. It’s not a burden or anything like that, helping him is what I’m here for. Laundry, pet care, groceries, etc. But it’s a situation that is so foreign to me that I’d like any input y’all might give me. I know the technicalities of his oxygen supply, his meds, keeping appointments, doctor’s instructions and all that…I guess I’d just like to hear about other people’s experiences.

Have you ever had heart surgery, or been on oxygen, or smoked a pack a day and eaten a diet of CRAP for years then had to change that rightthisveryminute? Have you tended a family member at home who has gone through this?

How did everything turn out for you? I’d love to hear your stories.

2

Well my dad is close to that age, he’s 75, but he is still pretty functional. Here is a website where you can talk to people live 1 on 1 about various problems or concerns you may have, for this situation or any other:
http://www.7cupsoftea.com

3

Almost 2 years ago, I worked full-time while caring for my boyfriend after reconstructive ankle/foot surgery. They removed hardware that was put in after a car accident pulverized his ankle a couple years prior, and simultaneously broke/reshaped his entire foot to give him an arch. He was given crutches, but they weren’t a very effective solution. He was a big guy then (still is now), but not athletic or particularly well-coordinated. That was a pretty rough few months, with a couple of **really **bad weeks. We lived in a basement apartment at the time, with a cobblestone walkway and handrail-less stairs that were unfriendly to the mobility-impaired. Unless we went grocery shopping after midnight (impractical when I had to wake up at 6-odd in the morning), he was too embarrassed to use the electric carts, thinking people would assume it was due to his weight. Even though he had a cast and crutches. So I handled most of the grocery shopping myself. We wheeled him around the apartment and toilet in a spare computer chair (thank god we had wood/tile floors). He was on oxycodone until the worst of the pain passed. He weaned himself off it fairly quickly–due in one part to constipation, but mostly from fear of addiction to the euphoria. Oh, and the sexual dysfunction. Not that we were having much of that anyway at the time, but opiates are pretty much the anti-boner.

Emptying jugs of pee morning and night was probably the worst part, since I’m rubbish with/disgusted by dealing with someone else’s bodily functions. I would make the **worst **nurse. But I loved him, so I did it. Shuttled him to a lot of doctor appointments when he couldn’t drive. Did some dressing changes, got to see the staples removed, and he let me pick the color of his cast. If I were a sadist I’d have gone with the hot pink, but I came down in favor of a more subdued navy. :wink:

His job back then was hell. It was part-time retail, low pay, dick boss, constant standing/walking on hard floors. When he went back to work after the surgery, coworkers and his boss regularly gave him shit for the doctor’s note that allowed him to sit while working the register. HR got involved but didn’t solve the problem, and we didn’t have the wherewithal (financial or emotional) to press the issue like we should have.

Now he’s a full-time desk jockey like me. His ankle’s doing great, we make good money as a couple, and we’re getting married this month. :slight_smile: We got through the hard times, but I don’t think I could spend my whole life doing that. At least, not while working full-time.

Lots of luck to you with your dad! I wouldn’t expect someone at his age to be willing to change habits, whether it’s smoking, drinking, or diet-related. Encourage him to make healthy choices. But don’t harp, or he’ll tune you out *real *quick. I’m of the opinion that the quality of any relationship is more important than the quantity. You want an eye to balance the two, of course, but at 70 your dad’s done pretty well on the quantity aspect already.

4

Oh, something else I found really helpful was to let things slide that I normally wouldn’t. Your dad will probably lash out. Try not to lash back. You may have insults directed your way on occasion. In my experience, these come out of pain or frustration with the situation, not with you personally. It’s OK to turn your back and roll your eyes. Once I was able to let that shit roll off, I was able to handle those situations **much **more gracefully. Trust me, my fiance’s not a dick. I wouldn’t still be with him if he were. I’m not the type to make excuses for ingrained dickotry. But you might have to put up with some temporary dickotry. For an independent guy, it’s incredibly difficult to be dependent on another person. Try not to internalize it.

5

You will need some you time. Make sure that for at least one day a week he’s booked into a respite care home. Failing that, ensure a nurse takes over from you at least one day a week.

6

He is likely to be very frustrated with his new limitations. Let him retain as much decision making and independence as possible and be careful not to treat him as if you are suddenly the parent and he is the child.

Like Rachellelogram said, he might lash out and act like a jerk. Try not to take it personally. Feeling helpless and in pain can bring out the worst in anyone.

Try to get him out of the house as much as he is up to. Staring at the same four walls is depressing and a change of scenery can help a lot.

He is lucky to have you there to help out, but you are lucky to get this chance to spend time with him. Take this opportunity to ask his advice and get him to tell you family stories.

Good luck, hope all goes well for you both.

7

Get as much outside support as you can if it’s going to be a long term situation, & take time for yourself as much as you can. I was primary caregiver for my wife who had als, & my sister is now in your situation with our father. We both found it overwhelming and exhausting, but Ymmv. It can be very difficult not to personalize when the sick person lashes out in frustration when you’re dealing with your own feelings and fears. Extend the “circle of care” as I’ve heard it called, so it doesn’t all fall on you if at all possible. Don’t be afraid to ask for help. Best of luck, my thoughts are with you and your family!

8

It’s very hard to offer advice not knowing if you’re in a long term situation or not.

I spent six years caregiving to my paralyzed, stroke survivor mother in law, in our home. Fully bedridden, incontinent, 17 meds a day, 20+ loads of laundry a week, plus meals! It was, in every possible way, a harrowing experience. There was a whole lot of learning that had to be done, often under enormous stress. And the road leads only to more decline, etc.

How you start off is important. Build the care around the schedules everyone already keeps. Try to pick a small relaxing activity you can squeeze into every day, and then make sure you do. Something like a walk after dinner, coffee and the newspaper in the morning, the late news and a glass of wine. (Should stressful change or decline occur (and it will!), bringing with it temporary chaos (and it will!), this little structure is going to help to hold you up!)

Well before the need is manifest you need to make respite plans, for you both. What will you do if you need a week away? Find a facility or home where he can get care, or arrange an alternate carer, etc. The point is to have a plan in place before you need it. Because eventually you will need it. Caregiving is hard, when you’re nearing your limit, admitting you need respite will not be easy, because you’re aware it will not be easy on your charge. That’s a very stressful place to start from to deal with a very frustrating respite care system. Figure it out now. If at all possible book a week, for several weeks/months from now. (Often availability requires this step. Book it!)

Do some reading about compassion fatigue, be informed.

But again, knowing if you’re in for the long term would be helpful. We found, after several months, living in someone else’s home was too uncomfortable, and bought a house we could all share. Being back in my own life, with my things, and my pets made all the difference.

9

Thank you everyone for your replies. Forgive this short response. I’ll be reading along until I get to a proper keyboard where I can contribute to my own thread!

10

Two words: adult nappies.

11

Yes well, that’s what we used, of course. Still piles and piles of laundry, my friend!

I always found it amusing at the drug store, while purchasing the huge pack of the largest adult diapers, at the check out they would inevitably, in a whispery voice of much delicacy ask if we’d like that in a bag? (even though they come with a handle!). As though to conceal it I suppose?

We’d just laugh and say ‘no, no need’, take our giant diapers, stacks of wipes, numerous prescription drugs and leave. And I would think to myself, I’m in dirty sweats, I haven’t bathed yet, haven’t been out of the house in six days, and have so many other things on my mind, like I care what people think seeing me leave with a huge stack of giant diapers. Pft !

12

If this hasn’t been done already, you should also insist on a Durable Power of Attorney for Healthcare.