I Know Life Is Not Fair

[DarkWhispers2U]

My fellow human beings, this is a complaint, but not over the site or anyone posting here. I just have to get this off my chest. It's a personal problem. You see, my uncle has been in dialysis for kidney failure for 2+ years now, and I am his driver. Three times a week (more if he has other doctor appointments too) I put 40+ miles a day on my vehicle. I help him because I care for him and there is no one else who can do it. He pays me $6 a day to cover fuel, if that matters.

He is my late mother's youngest sibling. Their family (and mine) were raised to be early or on time for all appointments. It's a mindset I'm used to, but today my uncle went too far. I am supposed to be there at 2:40 to pick him up. Most days, I get there by 2:30 and sit and wait until he comes out (sometimes waiting as long as 3:30 if complications arise.) Well, today I got there at 2:35, and surprisingly, he was done earlier than that.

He did not like having to wait. He accused me of being late, even though I was five minutes earlier than our agreed pick up time. Despite his nasty tone, I tried to play it off, reminding him that 2:40 was the agreed time, even if I usually arrive ten minutes before that. He did not appreciate me pointing that out.

"You don't sound sorry at all that I had to sit out here in the cold wind with dust blowing in my eyes," he whined. (He had eye surgery a few weeks ago.)

I shut up, didn't bother to respond because he'd had time to get angry and choose his words while I didn't. After seeing him safely home, I verified that I'd be back Thursday to drive him again. Then I just left, no goodbye or anything.

My husband thinks I should have gotten nasty, told him he was being unreasonable, blah, blah, blah... but the uncle's not one to back down or really listen when he's on a tirade. Sometimes, rarely, he will realize his own shortcomings or mistakes if given time away from the situation. I don't know. Just didn't feel like a winnable situation.

Anyway, would appreciate any kind advice or sharing of similar situations and what was done to help resolve them. Thank you.

 

[KeithD]

I suggest you try continuing to be a saint (which is what you are). The man is in pain and lives full time with the oppressive feeling of being blanked out terminal. It's too much for him to bear without the frustration, fear, and "I don't want to do this" seeping out the sides, so others have to try to bear it for him or it gets really ugly, an ugly that won't go away even when he dies. If you can stick out being a saint until that's no longer needed (which, of course, is terribly hard), the rest of your own life will be happier. (And chances are pretty good you'll have to rely on a saint or two someday too--one who will let your terminal feelings seep through when you can't hold them in.)

Yes, I've been there, but not nearly as long or by myself as it sounds like you've been.

 

[soflabbwlvr]

Sometimes you just have to be the bigger person. It might not seem fair, but there's nothing to be gained by blowing up.

 

[Rustyoznail]

You have my sympathy and my admiration.

I'm at that age where visiting/looking after cantankerous relatives is becoming the norm. What I believe is they're scared. Even with dementia, at some level they know the end of the road is fast approaching and there's not a damn thing they can do about it.

Unfortunately, you are in a no-win situation. Just try and remember - it's probably not personal, even if it feels like it. And try and get your husband to understand that you really need his support now.

Good luck.

 

[AvroAnsonXIX]

I don't like sad stories, but this one is a part of real life. A couple that I knew had been married for over 25 years and raised kids together. He had this "thing" (health concern) that he had discussed with her a few times over the last few years. It was there, but not so important that he remembered it when talking to the docs.

On his next visit, it wasn't big enough of a "problem" to make a special trip, he brought it to the doctor's attention. Apparently it was unusual enough that the "standard" physical didn't discover it. The doctor ordered tests which took a few months to get scheduled and completed.

He was given three months to live by the specialist. (This was maybe five years since he discovered the issue.) His wife "took charge" they used up accumulated leave and vacation time at work and started doing everything they had been waiting to do. She didn't give up hope and scheduled a second and third opinion which pretty much confirmed the original diagnosis.

The other opinions stretched the "death date" out a couple months. Maybe ... If a strict "no-fun" regimen of eating cardboard and drinking warm tap water was followed. The two discussed this option with three doctors and decided that he "would live while he was alive" and follow all medical instructions that didn't involve becoming an ascetic. They continued along the bucket list.

Three months later he was still alive, and also four months later. Five months later he actually seemed to be getting better. But the doctor said that was normal, that when a patient was terminal there was often a small brief improvement before a quick collapse. Plans they made to travel out of town were cancelled.

That was years ago. His wife who was under tremendous pressure for almost six months ... Someone who held off telling their kids, the youngest was in college at the time, until the second opinion ... His wife who was Ms. Cheerful ... She snapped, completely snapped ... It was like everything that she pushed back and compartmentalized for six months came out at once.

She began screaming at him in front of neighbors and friends for things that had occurred decades ago. She told him to leave. She called people to tell us all what a bastard he was, for minor infractions that were years past the statute of limitations. It was ugly and something she will never, ever live down.

When he finally succumbed nearly a year after his "three-months-to-live" diagnosis he was living not at home but with one of his children. The kids don't talk to their mother anymore. Her friends don't talk to her. If she died tomorrow this, after 25 years and raising children with someone I believe she loved, is her legacy.

 

[gunhilltrain]

What's really not fair - in the larger view of things - is that perhaps someday you will be the person being driven to dialysis. Or it will be some other malady that will catch up to you.

I'm going to be sixty-six myself in two months. Actually, more than death, I fear disability. I've seen it happen to several relatives over the years (they have all passed since then).

I have survived one major surgery four years ago, but now other smaller things are starting to catch up with me. It's the fear of the unknown - what shape will I be in five years from now? - that is the hardest thing to take. I don't know your uncle, but perhaps underneath that is one of the things that is bothering him the most and making him so difficult to deal with.

 

[SimonDoom]

You are doing a kind thing as a loving family member, but you are well within your rights to give him some tough love, and explain how you feel and that he's being unreasonable. You may at the end of the day keep driving him and doing what you see as your duty as a family member, but you're under no duty to bite your lip and be silent. You don't owe him that. You may decide it's not worth it to speak up, but you have the right to make that choice without any guilt.

 

[NikiVien]

My views are very different to most!

You're doing him a great kindness and yet he was extremely and unnecessarily rude to you, I personally don't think that's acceptable, regardless of the situation he is in.

I wouldn't get into a battle with him, but I would phone him and say I'm unable to pick him up on Friday (whenever the next trip is planned for) because I can't guarantee that I won't be ten minutes early as I've also got a lot going on, and that he should arrange alternate transport.

He then might realize that he shouldn't take you for granted and treat you as a doormat.

 

[Lori_the_Hoosier]

What Rustyoznail said. Your uncle is feeling the end of his life approaching, he's scared, and scared people lash out at the easiest targets, because they want them to feel the pain and impending loss they're feeling; misery loves companionship. You're a good person, in a situation that can only have one eventual outcome, and you only really have 2 options; grin and bear it, and see it through to the end, or harden your heart and abandon him when he needs you most. Somehow I don't think you can bring yourself to contemplate option 2.

Your uncle only has you, he's afraid, probably angry at the betrayal of his body he's suffering, at the unfairness of it, he knows his dialysis is the only thing keeping him alive, and he's frightened of what happens when it stops being effective. In my experience, people with a chronic, life-impairing disease like CKD Stage 5 go through the exact same stages of grief as people dealing with bereavement, and for pretty much the same reasons; they experience denial of their condition, anger at their situation, bargaining, storming the walls to try and deal themselves out of what they see as an undeserved burden, depression, and, eventually, acceptance. It very much sounds like your uncle is in the 'anger' stage, he's feeling the unfairness of it and he's only got one outlet, you.

My husband's mother was a dreadful person, she alienated her son almost from birth, told him he was a mistake, that he should have died in Afghanistan, not his half-brother, and when his arterial repair, because of being shot in the chest, failed, she told him it was his punishment for not dying in his brother's place and she wanted him to die, he didn't deserve to live. I carried out the arterial resection that saved his life, but his mother could only ask 'why did you bother? He's supposed to be dead, that's what God wanted, you should have let him die'. For the first time in my life I felt the overwhelming urge to slap the snot out of an old woman. She left him to be brought up by his aunts and housekeepers because she really had no time for him, and so he hardened himself against her.

When I told him she'd passed away he commented 'about time...' and carried on with his day like nothing had happened. He neither attended her funeral or even asked where she's buried, other than his stipulation that she not be buried in the family plot or anywhere on his family's land. He actually has no clue where she was laid to rest, and he truly doesn't care, and I think that took something away from the man I think is the most wonderful, caring, compassionate man in the world. I think he feels it too, he knows he was wrong to abandon her at the cemetery gates, as it were, but he's allowed the built-up hurt and anger to overrule his caring instincts and refuses to find any kind of forgiveness for her. Don't let that be you.

 

[soulhouse]

I agree with KeithD and Rustyoznail and the general opinion here. That said, if you believe that explaining your hurt would be productive, you shouldn't feel guilty at doing so, but try to do so with love and without anger. As others have written, he must be scared.

You have my sympathy. Remember though, when he's unfair, that you're doing a wonderful thing and that is what will stay with you after he has passed.

In the last year of my father's life, when we knew he was dying of cancer, I spent about half each week with him. He'd always been a very kind and gentle man, suffering from terrible self-doubt and depression all his life. Towards me, though, for reasons that eluded me until near his end, he'd been occasionally violent and constantly disparaging with me as a teenager and sometimes mocking of me as an adult.

For the last few years of his life, he suffered from frontotemporal dementia, which has a particular impact on personality and behaviour, and began to struggle with anger and frustration. He would refuse male carers entirely, although just about accepted my help as his son.

In that last year, I would leave work in a hurry and drive the 2 hours to his house to help him to bed, only to be met at times by an angry, cantankerous man refusing my help. Every couple of weeks I'd drive him to hospital to have his chest drained, a journey I would dread, because a dark mood would sweep over him that his dementia couldn't explain to him. Quite often, he would try to pick an argument with me. I must admit, there were a handful of occasions over the months when I snapped and bit back, particularly when he flatly refused my help and I had no choice but to insist on giving it.

In the last few days of his life, I made the mistake of returning home briefly, thinking he had a few weeks left. My sister called to say he was asking for me, but by the time I returned he was bed-bound and had lost his sight and speech. I held his hand, told him it was me, and he squeezed mine. He died 2 days later with the two of us holding him.

I suppose my point is that the love you give comes back to you in the end. I persisted all my life with him, even when he appeared ungrateful, and I feel the reward of that now he has gone.

 

[NoJo]

^^^ THIS


For several years I had to care for my mother who had severe dementia, and was often angry, confused and paranoid, and never showed me any gratitude. It was an extremely tough time for me. In her last months (but not before), she mellowed, and thanked me for the years of care I'd given her. She thanked me in Polish, her childhood language, because by then she'd forgotten how to speak English.

I miss her.

 

[LexxRuthless]

You have lots of sympathetic ears here. All of us have dealt with tragedy in our lives, and your valiant efforts in the face of a no-win situation are admirable. I can't offer you any advice, but it sounds like I could offer some to your husband. I was essentially in his position when my wife went through a similar situation, and she had to carefully explain it so I could stop adding to her already considerable frustration.

Have him read this:

Dude, I’ve been through something like this with my wife. What I did not get was that she just needed to have me listen while she got it all off her chest. I know, you would handle the situation differently. Maybe you don’t think complaining about it makes the situation any better, and you want to offer helpful alternatives. Right now, that isn’t what your wife needs. She just needs you to listen, to let her vent all this emotion and frustration that has built up inside her. You have to understand she’s not taking it out on you. Just listen, nod, smile to let her know you understand, and when she has got it off her chest, you hug her to let her know you love and appreciate what a wonderful woman she is.

 

[DarkWhispers2U]

Thank you

Thank you for your responses. My husband and I read them all more than once, and I can say in all honesty that I personally found each useful.

My sister called our uncle last night to check in on him. I had not discussed the incident with her. So, she wasn't prepared for his accusation of, "Calling to get mad at me because of (your sister), huh?" Of course, she admitted that we hadn't spoken then tried to get his side of what had happened. He changed the subject and continued to be rude to her until the call ended. Then she called me to find out what was happening. I gave her the short version, trying to leave emotion out of it. She suggested much the same as the folks here.

My husband phoned the uncle this morning against my wishes, but let me listen in to the call. He point blank asked if the uncle wanted us to look into a transport company to take him to and from dialysis and doctor appointments. Uncle insisted he couldn't afford it and would be stuck waiting more and more often with that option.

"If I'm such a burden, then I'll just take all my (pills) and no one will be bothered anymore," he threatened. (This is a common response to conflict, mind you.)

Husband reminded the uncle that I help him out of love and it would be devastating to me if he took his own life. He intended to ask that the uncle not take his frustrations out on me, but the uncle hung up on him and would not pick up when we called back. I left a message on his machine saying that I was sorry he'd been forced to wait in the bad weather and again verified that I was coming tomorrow morning to drive him.

Sister checked on him a short while ago. He did answer the phone long enough to tell her he planned to spend the day watching Netflix and to visit a friend this evening. Fine. Good.

Gonna stop worrying about this because my day off is being wasted on worry. Thanks again to everyone who answered my plea and/or sent positive vibes/prayers my way. Wish you all the best always.

 

[KeithD]

In one of my own similar situations, I got a valuable lesson in just how powerful is the attack on our defenses in the end-of-life experience that is drawn out rather than coming mercifully fast and without notice. At nineteen my mother had one of those classic out-of-body death experiences during a botched operation where she was left in a rural hospital corridor to be taken to the morgue while the drunken doctor went home. The next morning she was still alive and they got her patched up. After that, she had nearly seventy more years of life that was punctuated with occasional other life-threatening medical challenges. Up until the last one, she weathered these remarkably well and in good spirits and with display of gratefulness and high regard for all of those helping her through crises. What got her through, she always said, was that she'd already died once, and the other side wasn't scary at all. She wasn't particularly religious, so both her experience and her attitude about it were taken as genuine.

The last challenge was a broken hip and a series of strokes during what was logged in as a successful hip operation but which put her in bed, stolen of speech and movement, for five months until one night, somehow maneuvering not having the private nurses we had for her on duty, she managed to pull all of the plugs and go on her own.

She was a hellcat to the extent she could be those last five months and abusive to everyone. This belied all of those earlier brushes with death that she took in strife and was able to be sweet and grateful to her caregivers.

But we hung in there those five months, smiling through her tantrum attempts where she was scared stiff, hated being essentially a vegetable, marshalled all of her bitterness that she didn't just stroke completely out, and internally struggled with a mind that wanted to go but a body that fought for life. Her only external outlet for her frustration and fear were those who showed up to still be with her.

We did pray that she die those five months--for her own well-being--and we did salute her when she managed it herself in a system that wouldn't let her go despite all of the DNR forms she'd signed and we'd supported.

And forever thereafter we were all grateful that we hadn't taken her last five months as an indication of who she really was and that we continued showing up and smiling through it to the end.

The lesson for me was that I'm probably going to be a total monster when coming to the end if I'm not mercifully quickly taken--just like her. And I hope to hell those I leave behind don't hold that against me or remember me only as in that stage.

 

[lovecraft68]

I think you're doing the right thing, the man is going through a lot, in a lot of pain, older...not that its an excuse to take things out on you, especially being you're the only person helping

And that's the crux of the situation, you're the only person he has so he lashes out at you because there is no one else. You're doing your best and you know that, so I know easier said than done, but don't take it personally. You're building up some damn good karma that I hope brings you good things

 

[Trionyx]

Remember, the uncle may be getting a little demented himself. Early dementia can be a cause of sudden irrational behavior.