At the end of my tether

[brenda seal]

Laurie is driving me crazy , he is becoming very short tempered and sometimes downright nasty . In recent weeks his outbursts are becoming more frequent . Today he received a renewal notice for his disabled parking permit . Attached was a form for the doctor to fill in with information about his medical condition , there was a footnote stating if he held a current driver's licence the information could be used to assess his ability to drive .
Laurie has not driven the car since last July and presently is only walking from the bedroom to the bathroom and that is with the aid of a walking frame . He has always clung to the thought he will get strong enough one day to drive again and I have gone along with this hope . When I read the form out to him and expressed concern about what information the doctor would give and the likelihood of them not passing him fit to drive he lost it BIG TIME . Somehow it is now all my fault . This is all less than two hours of him apologising for his last outburst and me telling him he has to stop this .
I totally understand that he is ill and frustrated and does not want to surrender his driving licence but I am really getting sick of being the butt of everything . I am after all on his side !
I really don't know why I am telling you all this other than I need to get it off my chest .

[MaryJoe]

I hope the burden feels somewhat lifted by sharing.  I don't know the cause of Laurie's repeated outbursts, but I'd wager this one is definitely about loss of independence.  My mother-in-law went into a terrible depression when she was no longer able to renew her license.  She said it meant that the last bit her independence was gone,and now she was completely dependent on others for everything, even whether or not she had food to eat. She hadn't driven for about 5 years before that, but just having the license made her feel more in control.  I don't have an answer for you, but I'm sorry that you always have to bear the brunt of Laurie's anger and frustration. It seems that this disease and it's related health problems eventually rob us of everything including our self-control and dignity. The ones we love most always seem to be the closest target and yet you are always there doing what you always do - taking care of Laurie, making his life easier, loving him.  I'm so sorry that you are hurting.   

[Grumpy-1]

I know my wife can relate to you, Brenda.  For some unknown reason, I will just strike out at her for some stupid comment said.   Then feeling very sorry I will apologize.  I know she understands, but it still hurts her to be on the receiving end of a temper spell.   Hang in there  Grumpy

[MaryD]

 

[cariad]

I'm sorry to hear this, Brenda. Hopefully Laurie has now apologised (again!) and will resolve to teach himself to be more controlled in his reactions. I know I've been guilty of misdirected anger before, and so has my husband, and it helps no one. Good for you for explaining that you won't stand for it, hopefully he will take that seriously and put a stronger effort forward. Thinking of you.  

[Sugarlump]

Whilst you have my sympathies Brenda...I know I can be a very cranky patient (and I can hear that whine in my voice when I get tired and frustrated)
but I would just like to add a bit about losing your independence. I am a dialysis patient and caught a hospital superbug at Christmas. Within two weeks I couldn't walk
and became totally dependent on my partner's care 24 hours a day. Losing my independence and my ability to take care of myself hit me hard, but it wasn't the big
things that rocked my world but the silly little things I suddenly found I couldn't do. The first time he handed me a roast dinner and I found I was unable to use a knife and
fork to cut it up to eat, broke me into floods of tears. I was devastated, yet despite my hunger, couldn't bear the thought of someone feeding me...
Grief and frustration often shows as anger. Not to mention an underlying fear of being abandoned,despite how strong your relationship is.

    

[boswife]

this made me break down and cry for us caregivers... It's so increadably hard sometimes and i wish you the very best in knowing your not alone in it all.  I feel so lucky (in part) **as most of the time**, my hubby is so dear and kind, but just today, i thought  ... How hard it is for me to get through it all '*because* of his sweet, goodheartedness.  I cant bear watching this man hurt... Then, it came to me how increadably hard it is to spend every waking, AND sleeping moment tied to his care, and what IF he were having outbursts, how awful hurt i would be.  WEll, you have just spoken how awful it would be and im so sorry. I can only offer you prayers and some knowledge that we're all together in this, and please gather strength from that...
And i want to give thanks to those 'patients' who offer us the 'why's' of how these things come about.  It helps soooooooooo much knowing from your side, and not just our partners who we are sometimes blinded with love and fears for.  Thanks to all, thanks to epoman, thanks to all the now mod's that keep this board going, and us a place to come and be understood... 

[brenda seal]

I have just sent him off to dialysis for the first time ever on his own . Feel so bad , I am wondering if I should catch the train into the hospital...........

[Big E]

Brenda, going to dialysis by himself might make him feel more independent and in control, and that might put him in a better mood. Don't feel guilty!!!

[frankswife]

Oh Brenda, I understand. EVERYTHING is my fault. It was raining and the water leaked into the window and onto the floor. He lost it because, "I told you yesterday we need a gutter!" And screamed at me for what seemed like hours. Apparently I was supposed to go buy the gutter and install it it but I didn't get the memo. He does this sort of thing EVERY SINGLE DAY. There is no joy in my life. He is not physically dependent on me (yet, thanks be to God) but I feel the life being sucked right out of me. I work full time and I am also the President of our Union at work, and I AM EXHAUSTED. He hasn't had insulin for 2 days because he's taking a break from the insulin pump and using Lantus and Humalog pens. I said yesterday, and today, when I got home from work, "Did you take your Lantus?" Noooooo...... His blood sugar is so high now it's off the meter and he's like a 3 toed tree sloth. He been sleeping all day. I told him he needed to get up and care for himself and he replied that he wanted ME to take care of him. Like I don't do that 24/7 anyway. So yes, I gave him his shots. Sometimes this feels like some sick, twisted co-dependency.

[frankswife]

OK Now I feel terrible cuz I love him beyond words and I'm glad he's here. I just get so sad.

[boswife]

oh my goodness frankswife!!!!!!!!!!!!!!!!!!!!!!!! please know that we only know your getting it off your sholders for even a second!!  i too cant handle saying things because i know how awful i'll feel if i do.. Soooo dont YOU feel bad.. It's perfectly understood the love you have for that man!!  I speak of his sweetness, but did i mention his whole desire to be 'taken care of'!!!!!!!!!! lol..  I cant even explain my feelings on this as i/we caregivers,  are all somewhat living the  lives of two people...... having to think for two, feed for two, clean for two, do all the jobs that each of our minds think of and do them before one of us gets frustrated and bursts out.... this is no easy task... Please dont feel bad.. Your love is obvious 

[frankswife]

Thank you boswife. That made me feel better. 

[boswife]

ya know this all makes me 'almost' laugh behind my tears...(probably out of pure exhaustion but...)  It's ALL just too familiar, and gives me comfort somehow knowing that someone else truly does understand..  Its validating to our feelings to know that we're not just being awful when we too want to lash out a bit.
my confession.....  I fussed at hubby telling him if he didnt quit falling, i was going to put him in a nursing home at night so i could sleep.... Yea!! how ya like that for 'always' being nice..lol   We both kind of laughed in the morning, but heck, i was pissed off that he would have the nerve to get out of bed and wander around cause he couldnt sleep..     sorry hubby .. It happens   

[billybags]

It is such a pity that we dont live near each other, we could talk, laugh and cry all night. Every thing that these post have said, we as carers can relate too. Hubby also recieved his blue badge to renew, you need to be a fuc**** university student to fill it in. I also get frustrated and the last two days I have been thinking of running away, but I would'nt. I have mastered the art of DIY over the last 2/3 years, it frustrates the hell out of him, but he can not do it, so I have too. AmI doing too much, spoiling him and not giving him the chance to do any thing, am I making him too dependent on me, may be I am. I am the sort of person that needs things doing NOW, so I do it. I love him, I hate to see what this shitty desease has brought him too, from being a strong man to this. I just thank God that we have had a good life, have two great children, been able to travel alot before this came to be. I might take things the wrong way when he spits, I might spit back, but we both understand why we are doing it. Its because there is no one else to spit at. Carers I salute us all.

[kiddogal]

Because of diminished eyesight, my husband had to take the driving test every year for the last 10 years.  He would always get uptight, and panic before the test.  It was extremely stressful on me and I was always relieved when he did pass the test.  Sometimes he had to take it twice.  Two years ago, he failed the freeway driving portion because he would not drive the minimum freeway speed - 45 mph.  So I told him just take it without the freeway requirement, and give up driving on the freeway.  He agreed, he did not drive the freeway much anyway, and he was not going to drive anymore than about at a 10 mile radius.  He passed the 2nd time.  Last December he decided to give up driving altogether as he knew his sight was worse, and he was having a lot more trouble seeing the color of the signals.  I was lucky, he made the decision, not someone else making it for him.  I think that really helped.  I am sorry you are going thru this.

[boswife]

good point kiddogal!!  Its having something 'your' decision that can make a whole big difference in all our lives.   

[brenda seal]

Thank you my friends for listening to my whinges and offering support and advice . I feel quite petty when others are going through so much more - the passing of Bajanne and the terrible trouble desert dancer is having for example . I did give in and went in to the hospital by train as i was worried Laurie had no food or his medication . When I got there he showed no surprise to see me and just acted as though nothing was amiss . I honestly believe he does not realise how unreasonable he is being or remember what he says .
We bought him a mobility scooter to give him a measure of Independence and he drove it up to the corner and back for a trial run and he has not used it since . He just is not well enough even though he will not admit it . We have started to go to the local Mall once a week or so in a wheelchair accessible taxi and have lunch or a coffee and a little look at the shops and he seems to enjoy this little outing .
He now informs me that if the doctor does not pass him to drive on the disabled parking permit form he will forfeit the permit and keep his licence . He is now forcing himself to walk out to meet the ambulance using his walker instead of me pushing him out in the wheelchair , after dialysis , however he is grateful to be brought back inside in the wheelchair . He wants to build up his strength so he can walk into the doctor's surgery when he goes to have the form completed  . Stubborn old bugger !

[amanda100wilson]

A few years ago, I had my license suspended because I had some seizures.  It is very hard to,lose one's independence and it is another example of feeling one's world shrinking and diminishing.  I spent a lot of the time feeling sad and depressed, and I bet that is where this all springs from, sadness, depression and frustration.  Unfortunately at these times, it is those nearest to us that get the brunt of it.

[billybags]

Brenda, they are stubbon boggers. Put your self in his place, I would be well and truly pi**ed off if all my normal things came to an end. It is so frustrating for a man that has been so healthy and active all his life, to end up like this. They were stubon boggers before all this shit, I know mine was. You have a nice week-end, get the wine out.

[Emerson Burick]

Brenda, they are stubbon boggers. Put your self in his place, I would be well and truly pi**ed off if all my normal things came to an end. It is so frustrating for a man that has been so healthy and active all his life, to end up like this. They were stubon boggers before all this shit, I know mine was. You have a nice week-end, get the wine out.

And after you've had a glass or two, tell him, coolly and calmly, that if he continues to act like an ass, one of these days he's going to wake up with a pillow being held tightly over his face, and that with his history of health problems no one will bother to do an autopsy.

[justjen321]

Brenda, I feel so badly for you.

And in your notes, I see you apologizing for wanting to be treated decently, and wanting to talk about how badly it hurts you. Please, stop apologizing for that. You DESERVE that.

I am incredibly fortunate. My husbands kidneys failing actually brought us closer together, and he's better to me than ever. We tend to tackle this as a team, and he is very aware that while HE got drafted onto the team, I had an active choice, and I chose to join.

The reason I say this is to tell you this: We have a good life. We don't snipe at one another, and we have a medical team in place that makes this whole thing as 'easy' as it possibly CAN be.

And EVEN given all that, I still feel the weight of someones well being on my shoulders, 24 hours a day, 7 days a week. I don't care how easy going someone is, or life is, it's a heavy, heavy weight.

Please. PLEASE, find time to take care of yourself. It was the hardest thing I ever did, because it felt selfish. As if he deserved ALL of my time and energy, and I deserved none. Give yourself a break. Let him to to dialysis alone. Take a hot bath. Read a book. Catch up on something that's uniquely yours. Take a moment to breathe. When so much negative energy gets floated at you daily, it's very, very difficult to keep yourself happy and healthy. And if you simply can't convince yourself that it isn't selfish to care for yourself too, then think about who'd take care of him if you get sick. That might do the trick for you.

[boswife]

Justjen, i love and appreciate all of what you said!!  i would love to point out each thing and say how i appreciate it but................ this caregiver/partner  is all pooped out this eve.  Just wanted to thank you for your brilliant words!  so   

[Henry P Snicklesnorter]

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[brenda seal]

My dear friends , I hope I have not given you all the wrong impression about Laurie - he really is a lovely man ! I have been with him since I was seventeen years old , and that is 44 years . He just has these occasional outbursts since he has been so sick and they are just the result of his frustration at feeling useless and losing his independence . I can usually cope , but when I am tired or not feeling well myself I bite back which just escalates the situation .
I go with him to dialysis because he is transported to and from the hospital by ambulance and because they are essentially emergency vehicles often there is a long wait . We can be picked up as early as 11 am and not get home until after 9 . I give him lunch and medications , fetch and carry and keep him company as it would be a very long day other wise . I spend a few minutes with other patients who are there alone and do a few things for them as well when they ask .
I know our time together is limited and want to make the most of it .
I thank you all for your advice and kind words , it is such a relief to be understood and be able to have a vent . Unless you have been through this stuff , you just can't understand . I try to keep my sense of humour and stay as up beat as possible but last week I am afraid I indulged in a little self pity .