So, those of you in a similar situation to mine – or those that have been – what do/did you do when you feel/felt you’ve just reached maxed-out? And I mean seriously maxed out. Dad is about to be shifted, yet again, from hospital back to rehab. In the next day or so, I’ll be back to living life between weekly insurance company rehab authorizations and tracking down male obituaries to see where an open nursing home bed might exist once the current rehab stint runs out – on top of a respectably busy freelance work schedule filled with clients who might be sympathetic but still need me to meet their deadlines. And all I want to do is curl up on the sofa, with “The Borgias” OnDemand and a pitcher of vodka gimlets.
Dad went into the hospital a week ago because of fluid-buildup complications in his lungs related to his congestive heart failure. Now, mind you, I’d been nagging the rehab center nursing staff (and it’s a good facility, really), because he’d gained 20 lbs. in two weeks. In their mind, since he’d come to them so depleted following the colostomy – and because, as a result, they’d been plying him with appetite enhancing drugs and anti-depressants – this just was a sign that the drugs were doing their job. Well, in the last week, he’s peed that 20 lbs. right out his catheter. Keeping both his kidneys and heart happy means walking such a tightrope that I don’t see how it’s possible to keep everything balanced. So, all I see is a return to the wash/rinse/repeat cycle – and an eventual replay of last week’s 10-hour ER visit, followed by daily 1.5-hour return trips to the hospital to see how he’s doing, until the whole process starts all over again at some point in the near future.
The whole experience has me beginning to feel an understanding of the concept of hitting bottom – reaching that point where you don’t see a way out without some kind of intervention. I had a serious conversation with my own physician (also my father’s doctor, so he knows the story) about antidepressants last week. I’ve thought a lot about bringing this up in the blog, but I think it’s important to mention, because it has to be a spot many caregivers hit. The prescription he gave me is still sitting on the kitchen counter, though. My doc’s description of the side effects and my own research has me holding back. My doc suggests patients not start on antidepressants if they don’t think they’re going to be on them for at least 6 months – but all I want is a helping hand through this last stage of Dad’s life. Plus, as a creative type, I’m not sure I want something that sets up bumpers to keep my mood focused on the center line – really, would this blog have been anywhere near as interesting to read without a few over-the-top rants? Beyond that, there’s a fair amount of research out there suggesting that sugar pills work just as well, so long as the patients THINK they’re getting the real thing.
Underlying the pharmacological distrust, there’s a big part of me saying – well, dude, the reason you feel so suck-y is that, um, well – you’re in the middle of a situation that just all-around sucks. You’re just feeling it as it is. [And I want to assure all of you who know me (and those who've gotten to know me through this blog) - my feelings have absolutely nothing to do with self-hurt or destruction. Really and truly.] So, I try to get out and walk every morning and get to the gym 3-4 times a week to take the edge off. I’ve even taken up yoga, which can be surprisingly therapeutic. I also have my gimlet, paired with 15th Century papal sex-and-history fantasies (thank you Showtime). And I just try to take it all a day at a time.
It would be good, though, to hear how others get/have gotten through such times. How do you see someone through to death while maintaining your own life during the process?
January 13, 2012 at 9:38 am01
Wow, yeah, it sounds like a pretty bad cycle.
Just to comment quickly on the antidepressants, I’ve been there and done that a couple of times. I don’t have a simple answer. On the one hand, don’t not take them because you can write more creative blog posts when you’re miserable
Your responsibility to your own health is more important than your blog readers’ pleasure … and actually, antidepressants can have the opposite effect. I briefly took Prozac, years ago, and I found it made my thinking razor sharp. I learned that was one side effect for some people. It was almost spooky, I felt preternaturally clever and witty and verbal. I’m verbal anyway, but this was like a continual looping tape of snappy, sarcastic remarks in my head … Anyway you don’t know if antidepressants would necessarily damp down your creativity; that depends on the drug, the dose of the drug, your personal metabolism and neurological wiring, and probably a lot of other factors.
On the other hand, it can be quite difficult to get off antidepressants. I’ve done it twice and the first time it was total hell (weeks of sleeplessness – I apparently went off them too quickly, even though I did it just the way the doctor said). The second time it was a bit easier because I tapered them very very very very slowly (I mean at the end I was grinding pills into powder and licking tiny grains off my finger). This too is an individual thing.
Hang in there.
January 13, 2012 at 9:38 am01
I remembr the antidepressant struggle. I just reached that point where I needed somthing and I don’t regret that decision. Four months after my mother’s passing I began tapering off so I guess I took medication maybe a year or so.
January 13, 2012 at 9:38 am01
As a former middle-aged poster child for Paxil, which did everything I needed in order to get through a bad patch including making it possible for me to be productive, I’d urge you to consider it as a bridge. Use an anti-depressant to get where you’re going; wean yourself off it when you can. Paxil does have at least one odd sexual-fulfillment side effect for some………
January 13, 2012 at 9:38 am01
Wow – yes, you’re in a really really difficult spot. I’m so sorry.
I heartily recommend engaging a hospice service. His congestive heart failure is a diagnosis that would allow you to use hospice. They are wonderful. They help with costs that Medicare or private insurance won’t pay (durable medical equipment, medicines related to his hospice diagnosis, incontinence supplies, bathing supplies). Even better – they supply a TEAM, for him AND for you! A social worker, a nurse (RN) and doctor, an aide for 2/weekly showering, and a chaplain and volunteers to sit with him. And, what’s best – they would come to your father, wherever he is. Fewer trips to doctors for you. Support with finding nursing home (obits? really! wow…), etc. Someone for you to call for support, for advice, with concerns. Support for him – but especially, support for YOU!
Some view hospice as ‘giving up’ – but hospice patients actually end up with a LONGER life because they are getting better care. And it’s all free – paid for by Medicare.
I hesitate (literally) to add this, but my mother has lasted way way longer than I expected, even on hospice (I think she’s 3 years with CHF now). She is eager to die – but doesn’t get her wish, and could live another few years, I suppose. So, while I don’t know your father’s diagnoses, you may have a lengthy timeframe in front of you. It feels cruel to say that, because I know you’re suffering. But it means you need an ally, a team, to help you with what could be a marathon.
Re antidepressants … I’ve used them, and maybe they helped, maybe not. I wasn’t terribly impressed, in my own case, at that time. But, yeah, you just have a sucky situation, that antidepressants may or may not help you handle.
January 13, 2012 at 9:38 am01
Seejr –
So sorry you’re burned out. I guess I can’t offer too much advice, because my parents haven’t hit that point yet. They are still happy, and their conditions are well managed.
Have I been burned out? Well sure. January (right now!) marks the beginning of year 4 with them in my home, and the conversion of my sunroom into a pseudo medical suite.
But – after 3 years of attending to them daily after work (rushing home from work to get them dinner) – I adjusted the home health aide’s schedule this past summer so that she can leave during the day in between their needed assistance – and comes back at bedtime. (She lives less than 3 miles away). She likes being able to come and go as she pleases – and I like – that 6 days a week I can essentially ignore them.
I know to all you non-burned out caregivers – that sounds horrible. But really, it has made a world of difference. Generally I pop my head in on them once a day minimum. But I don’t HAVE to. 6 days a week, I don’t HAVE to. And that has made a world of difference.
Of course – I still have all their bills, legalities, and property to deal with. And that is slowly driving me into crazy land. And even with such a great break from them – it gets to me. I was taking my dad to a dr. appt this fall (I still do all dr’s appts, as that is beyond the aide’s scope of responsibility) – and I was in the examine room with him, and I just freaked out. I started to breathe quickly, I felt overwhelmed, I felt panicked and I just couldn’t help thinking “this is the rest of my life. Progressively more depressing doctor visits until they tell me he’s acutally dying”. Outwardly I looked fine. I kept up my happy chatter with dad. I excused myself went to the bathroom for several minutes and cried in the stall while I texted friend on my smartphone.
Then I wiped my face off and went back in the room. The wound he was being treated for (bedsore on his heel, we take precautions, they still reoccur every couple of years) is now healed. I think I did have a drink that night once I got him safely back home.
So – I know burn out. My only answer is delegate whatever you can, and only take on what you absolutely must. Then remember that you are doing all you can for your father, and whatever shortcomings there are – it is your best. And forgive yourself that there are shortcomings, because you are human.
One word on the antidepressants — I took some once, years ago, when my marriage was in a rough patch. They made me feel spacey and dead inside. I took them for 4 days, called the doctor and said it was ridiculous I was going to stop them – because “I have a right to be sad after all”. The doctor agreed immediately and said – if you don’t feel “better” on them, you don’t need them.
I didn’t need them. There is a difference between being clinically depressed (as in can’t shake it – letting seemingly little things overwhelm you, self-destructive, etc..) and being down. You have a very good reason to be down and burned out. Medicine will not change those reasons, nor fix them – and really it will not necessarily make you feel better about the situation.
Sure – try them if you think you need to. But, as your situation has a clear / reasonable “cause” (i.e. this isn’t depression that is just “in your head”) .. you may find like me, that they really do nothing to help and instead just make you feel weird.
Best to all in these trying situations,
a.
January 13, 2012 at 9:38 am01
I’m not sure how to answer your very important question. I’m not the one who did it, last time it needed doing in our family.
I’ve discarded about six paragraphs of ‘what we did and how well it worked’ because it just repeats the experience you’re talking about. Somehow it seems that each caregiving person, whether family, friend, or employee, needs to learn the patient for themselves. And too often this learning happens by putting the frail elder person into serious physical distress.
As you know, you’re not the only one doing this. And it IS hard, and it DOES suck. I hope some commenters have more useful advice than I do.
Holding you and your Dad in love and light.
January 13, 2012 at 9:38 am01
Hi Chuck,
Your last sentence says so much: “how do you see someone through to death while maintaining your own life in the process?”
I work in elder-care (not a nurse,however) and I see these situations frequently. Everyone has their own way of dealing with it. NancyG recommends hospice (at least talking with them) and I’d also point you in that direction. Dying well is a lot better (in my opinion) that hanging on to any semblance of life. But it’s your dad’s attitude that will make the most difference, to him.
And, it’s your attitude that will make the most difference to you. I’d say being a good listener, being supportive, but not being enabling, are 3 key things to helping others.
Something that really old (and not so old) folks love, is reminiscing about their younger years. A photo album and “Do you remember….” are all you need. It lets a person know their life had/has meaning, not only to themselves but also to others.
Lastly, I hesitate to say this, but I will…. you’re already ‘medicating’ with the vodka gimlets. Adding an anti-depressant to that isn’t such a good idea. I’ve seen folks where I work who had to stop drinking and ramp up the exercise and the difference in them is amazing. They look/feel/act so much better. Just food for thought. Realizing that you’re burned out is very important. You certainly sound burned out, and recovery is attainable. But it takes time, and part of your burn out is probably plain old grief. Time will help you recover and go on.
You have a good network of people around you… they’ll help a lot.
Best wishes to you, and your dad.
January 13, 2012 at 9:38 am01
A word about SSRI’s (Prozac, etc.) if you are on the bipolar spectrum, they will crank your energy way up – it’s called hypomania. Diane’s description of her thinking becoming razor sharp sounds like it could have resulted from that type of activation. One way that hypomania manifests is as irritability. If you take an SSRI, keep an eye out for signs of hypomania (not sleeping, lots of energy, spending like crazy, increased libido, etc.) and be very careful if you see yourself getting more cranky, impatient, etc.
At this point, my experience is purely theoretical. If your Dad isn’t ready to let go, then you don’t have much choice about the hospital runs. Have you considered that you may need to move him to a nursing home? I found the book “Slow Medicine” helpful in thinking about end of life issues.
January 13, 2012 at 9:38 am01
Really regarding medicaion Chuck should consult his doctor and not a bunch of strangers on the internet … I was just looking up side effects of Prozac and the thing I mentioned is not even listed. Quite possibly I completely imagined it. And probably none of us are doctors, or if we are, we shouldn’t be prescribing on the internet anyway.
January 13, 2012 at 9:38 pm01
Be assured, as I mentioned in the post, I had a lengthy conversation with my doc about both antidepressants and anti-anxiety meds. And he insists on very close supervision if that’s a route I decide to take. But it is really interesting hearing of others’ experiences and motivations on either side of the issue.
January 13, 2012 at 9:38 pm01
Good to know – I just thought I’d point out that I for one am completely unreliable … I know I’m a textbook case of imagining both symptoms and drug effects (and side effects) based on power of suggestion. We probably aren’t any sort of random sample here …
January 13, 2012 at 9:38 pm01
I completely agree with Karen and NancyG that hospice would be of great assistance to you. I wish I had called them much sooner when my mother died (she had emphysema). We only had them a week or so; but what a help they were! With my father, I had just made the decision to call hospice (he had just had a severe heart attack, and was in a nursing home) when he fell, hit his head and had another heart attack in the ER. The staff respected my wishes as his healthcare proxy – and did not do any extraordinary measures so he died. Of course I was grief stricken beyond measure but also ….. relieved. I had spent so many years taking care of them both while raising three boys and working full time (luckily I have a wonderful husband). I so feel for you. I still really miss my parents but not the endless worry, work, whatever… I will try to do whatever I can to avoid my sons having to go through what I did. I am so sorry. You sound like such a caring person and a very good son! Don’t feel guilty. I didn’t go the antidepressant route – but I did have a drink or two – lol…
January 14, 2012 at 9:38 am01
Well, I have to confess that during the last couple of months of my mother’s life I took the antidepressants my doctor gave me, though I cut the dosage in half. And I timed when I took them so that by the time I hit the part of the day when I was working hardest for my clients, I was at the end of the effect of the medication (and not so buffered from reality).
Sure, it was a crutch, but my doctor pointed out that the stress of the experience was going to have long-term bad effects on my heart and circulatory system, if I couldn’t back off once in a while.
After my mother died, I stopped taking them, and life has gone on since then drug-free. No guilt, man, do what you need to do to get through this particular hell, as unscathed as possible. BTW, combining alcohol and meds not a good idea.
And, yes, I’m now seeing my cardiologist regularly. Coincidence?
January 14, 2012 at 9:38 am01
Since the end of October my mother has gone from living alone in her own home, to a stay at a nursing/rehab facility as a result of a fall in her bathroom, and now on to a retirement center (basically assisted living with a few more perks). Things have quieted down a bit for me but I still worry and monitor her care closely.
You mentioned your father gaining 20 pounds in two weeks. My mother’s physician noticed a 7 pound gain in the course of a month with my mother (along with swelling ankles) and immediately increased her diuretic and added an additional heart med. Now she’s weighed every day and things are back to normal. You were right to squawk about your Dad’s weight gain. Nobody gains that much “fat” weight that quickly.
I go to our local Wellness Center at least six days a week to work out on their exercise machines and I can’t say enough about the Zumba dance exercise class I take there twice a week. I’d do it every day if I could. I call it my “sanity insurance.” We’ll see how that goes.
Keep posting. I find writing about it helps to kind of compartmentalize and somewhat neutralize the negatives.
January 14, 2012 at 9:38 am01
Another vote for hospice. The whole focus is on making your dad as comfortable as possible and helping you. Most people wait too long before involving hospice ((oooooo, strangers in the house!) but the nurses and volunteers aren’t strangers for long. And they’re so helpful.
As for anti-depressants, let me point out that the aim is not to numb you out. I take an SSRI and I can rant with the best of them. I still feel happy and sad and angry and everything else. I just no longer wake up in the morning wishing I could sleep permanently.
I know this is an awful period. I also know it doesn’t last forever.
January 15, 2012 at 9:38 am01
Look, I don’t have any advice for you. But I just want to tell you how grateful I am that you are discussing your struggles so honestly. Having you as a virtual companion on this journey makes it a little less lonely and difficult. Thank you.
January 17, 2012 at 9:38 am01
I’ve been reading your blog for about a year while my mother-in-law passed through her final phase of life with Alzheimer’s. She died a month ago. I took an anti-depressant (Zoloft) for 4-6 months a year ago and found that it really helped. It is your decision to make, of course, but remember that while the number of side effects is daunting, few people actually experience them.
I wanted to mention, if you don’t know about this organization already, that my husband and I were really helped by http://www.APlaceForMom.org when we needed to find assisted living for my MIL. They refer nursing homes as well. They are a non-profit, but will receive a referral fee from the facility if you choose one that they recommend. I liked working with them because they emailed prices and set up appointments for us to go visit places. I think all the interaction was over email. The woman we worked with really knew a lot of the AL providers and would tell me when they expected a vacancy soon. I thought that it minimized most of the legwork that I would have had to do.
Take care and good luck.
January 18, 2012 at 9:38 am01
I have been following your blog for a number of months and wanted to share my story. I am the only child of a 92 year old stubborn Irishman who had a massive stroke a year and a half ago. I have been doing the same dance you are doing now and there are many days when I feel l can’t bear it another second. The logistics, the legal issues, the decisions to be made. Not to mention the pain of watching him suffer. He so wanted to escape this fate of living in a nursing home but his wish was not granted. He is stuck in a body that no longer works but has just enough cognitive function to know what has happened to him. It is hell on earth for both of us. I can only say that nothing has made this better. An ocasional xanax or a glass of wine is about all I can muster to take the edge off. Nothing helps. Except perhaps the knowledge that I am doing all that I can to make him comfortable and have his best interest at heart. It just does not always feel like enough. My advice: Be kind to yourself. I am trying to do the same.
January 19, 2012 at 9:38 am01
I really feel for you. Can hospice help in this situation?