I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Spouses and Caregivers => Topic started by: brenda seal on May 13, 2013, 07:30:07 AM
-
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 .
-
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. :cuddle;
-
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
-
:grouphug;
-
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. :grouphug;
-
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.
:cuddle; :cuddle; :cuddle;
-
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...
-
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...........
-
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!!!
-
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.
-
OK :rant; Now I feel terrible cuz I love him beyond words and I'm glad he's here. I just get so sad.
-
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 :cuddle;
-
Thank you boswife. That made me feel better. :flower;
-
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 :grouphug;
-
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.
-
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.
-
good point kiddogal!! Its having something 'your' decision that can make a whole big difference in all our lives. :flower;
-
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 !
-
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.
-
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.
-
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.
-
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.
-
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 :thx; :flower;
-
.
-
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 . :grouphug;
-
Every human indulges in self pity at one point or another. :)
I certainly didn't intend to imply that your husband was a horrible person. :) I'd wager you wouldn't have made 44 years if he were.
I'm just seeing SO much lately about caregiver burnout, and felt compelled to reply because it happened to me too. And it's a pretty unique feeling for those of us who have made the choice to care for someone we love.
My husband and I are youngish for this illness. (I'm 41, and he is 45)
For the entirety of my life, I've been the person who handles 'stuff'. I raised three kids, had a surrogate baby, and have an 'adopted' son who turned to me when his mother passed. In my extended family, I am, and always have been, the one who handles 'stuff' like planning funerals and dealing with the medical profession when someone needs an advocate. (I guess being bossy, and willing to speak up are helpful in these situations. :) )
I've spent my entire life being the person who says 'I got this'. And from the moment my husbands kidneys failed unexpectedly, 'I had this'. I educated myself, advocated my fool butt off, learned to do his dialysis at home (other complications make it impossible for him to do it himself), learned wound care, coordinated a medical team for him that I trusted, and more importantly, who trusted and listened to me, handled deliveries of all manner of things, maintained a home, a couple of dogs, planned and executed many trips with NxStage to keep my husband feeling active and able to travel (a passion of his.) I sent kids off to college, handled an uncle in the burn unit and advocacy for him, handled my father having a massive heart attack, and advocacy for him, lost my grandmother and went out to handle her funeral so the rest of the family could grieve. I took great pride in being the strong one. The rock in our family.
Until one day, I looked around, and realized that I didn't have a rock. A strong one. And I had a sudden urge/need to set down the heavy backpack I was carrying. To breathe for a moment. And I couldn't. There was nowhere to set it. No one to say 'Let me hold that for you a moment'.
I stepped back and realized that I had managed to make myself the least important thing in my life. Noble, right? No. Stupid. I love being a caretaker to people, it's in my nature, in my blood, and it gives me tremendous satisfaction. But if I always prioritize myself as the last well to be filled, the chances are, I'll just wind up bone dry. And if I do, I have nothing to offer anymore. :)
I probably projected some of that on to you. Caregivers, and particularly dialysis caregivers, are in an unrelenting storm. We know that the sun being out in this very moment does not mean that a horrible thunderstorm won't come in the next five minutes. We can sail along with the breeze and be completely in control, and the boat can suddenly flip over for absolutely no reason at all. And that leads to insecurity, and to not enjoying the calm sailing, because we are always, always worrying about where the life jackets are because we KNOW how tenuous this boat is, and that it could flip any moment.
After much soul searching, introspection and in deep conversations with my husband, we realized that in my life of trying to take care of others, I'd lost myself, and my ability to care for myself. My ability to do something as simple as go shopping with a girlfriend without a constant stress of what was happening at home. My inability to leave him in the hospital (thank goodness that hasn't happened to us often) because I don't trust doctors who don't know him (with good reason.)
So, I'm sorry for projecting. :) I have a soft spot in my heart for caregivers, and I advocate for them whenever I can. We beat Superman in the 'Hero' category, and rarely get recognized for it.
Be kind to yourself. Be gentle with yourself. Remember that you matter too, you are a gift to your patient, and deserve respect as such. Take care of your health, and most importantly, take care of your soul. Prioritize the things that you genuinely don't need to be doing right this second so you can do something for YOU, even if it's just watching a TV show that you love, taking a short walk to feel the sunshine on your skin, reading a book.
And as a last, lighter thought, when they get cranky, grumpy, and take it out on you.... remind them that an air bubble in their lines can solve this whole thing, and it's untraceable. :) (We use a lot of sick humor in our house. Helps us through the storms.)
Jen
-
jen, you got that spot on.
-
yes, once again jen, your 'right on' :cuddle; Thank you for speaking so clearly for us all. and FW,, let me tell ya once again ;) I speak of my 'precious' man as though it's 'always' that way... NOPE, theres times where not only am i worn, but completly ready to RUN from it all, and a whole lot of other things i could say about his times where he pushes me to extreeme. (hes very needy ok :o ) What happens, why im not usually writing about it is because someone else, some 'other' carepartner, has come on to express just what i was about to, so i get relieve, strength from hearing im really not in this alone, and get on with it. We all are in this together, patient and carepartners,,, all of us. The heartachs and fears go for both sides :'( Please, please dont think we feel anything bad about your dh..... and, like i said before too,, i have a huge 'guilt' complex so dont usually express things as well as you. for fear of how 'ill' feel after so DONT YOU DO THAT too... k :cuddle;
-
You caregivers are so awesome! Please remember that even though we may not show it, we truly appreciate everything you do for us. As the "go to" person in my family, it is extremely hard to rely on someone else to help me. Even if I would gladly do the same for him. Hearing your stories and struggles has helped me be a better patient. I try to bite my tongue when I want to lash out. He is the only one there to lash out at, so I know he gets the brunt of my frustration. Thank you for sharing your side of things. I am trying to remember that he is struggling as much as I am in this whole mess. I know he knows how much I love and need him, but I need to tell him more often. Thank you all for sticking with us! Only the strongest of relationships can survive this situation. I am so glad mine has, and I know your spouses are thankful, too. :bow;
-
and as for you angiepkd :flower; bless your heart. I sometimes fear any of you 'patients' reading this section because we love 'you all' Soooooooooooooooooo much.. Truly!! It has become nearly as hard to hear of 'your' struggles as much as our own 'personal' struggles. Because we love someone in your same situation, our love is easy to extend to you all knowing the truths of it all.. Sending love and comfort and prayers, and blessing and all good things to us all :)
-
and as for you angiepkd :flower; bless your heart. I sometimes fear any of you 'patients' reading this section because we love 'you all' Soooooooooooooooooo much.. Truly!! It has become nearly as hard to hear of 'your' struggles as much as our own 'personal' struggles. Because we love someone in your same situation, our love is easy to extend to you all knowing the truths of it all.. Sending love and comfort and prayers, and blessing and all good things to us all :)
Thank you boswife! Right back at ya! :cuddle;
-
@Angie - You patients are pretty damn awesome yourselves. :)
I don't know if all of us do this, but when I reference medical stuff for my husband, I always use the phrase 'We' and 'Our'. 'We' do dialysis at home. 'Our' this, and our that. It really does become a part of BOTH people in the relationship, even though one still pees just fine. :)
-
I don't know if all of us do this, but when I reference medical stuff for my husband, I always use the phrase 'We' and 'Our'. 'We' do dialysis at home. 'Our' this, and our that.
I think my wife would rather drink my UF than say anything like that.
-
Justjen, what an insightful illustration about the lifeboat.
Yep, it's hard to get out of that, "Waiting for the other shoe to drop" mode. And yep, it will make life a living hell for both of you. Been there, done that, have the T-shirt.
Different strokes for different folks, but thinking of dialysis as a joint project between the two of us ddn't work for us at all. I am the manager in the family, the one that manages. If I'm doing something, I'm managing it. He didn't want to be "managed." All my well intentioned suggestions about diet and dialysis schedules and exercise were driving us further apart.
I had to take a step back and realize that ultimately it is his life. He reaps the consequences, good and bad, of his decisions about treatment and everything that's attached to it. A counsellor suggested that I look at myself as more of a tech than a spouse. Frankly, it allowed me to stop wrestling with him for control - I'm more or less the help, he makes the decisions and if I don't agree with it, it's okay not to push my viewpoint.
I probably have not explained it at all well, and I certainly wish I had the sort of relationship that it sounds like you and your spouse do, but just adding my two cents worth. One thing that is constant about kidney disease, dialysis and ll it's attachments is that there is no constant!!
-
Justjen , Bevvy and all my other friends who are walking in my shoes , indeed there is no constant and the boat can flip at any time . Laurie was admitted to hospital on Thursday after dialysis . It seems he has been battling an infection , which is now a full blown massive infection and needs IV antibiotics for at least three weeks . He obviously has not been feeling well for some time - hence the cranky pants . You would think by now I could read the signs . Tomorrow they are going to put in a Pic line and I am hoping that means he will not have to stay in hospital for the antibiotics .
Justjen , I think one of the hardest things for me about all of this was the realization that I no longer have a rock ! Laurie was always there to take care of me , I liked it that way as I am no women's libber . I lost my Mum a couple of years ago who was my other rock . Now I have to be the rock and you are SO right - it would be nice sometimes to put the backpack down for a little while .
I am so much luckier than most as we have four great kids who help out a lot because as I have said before when you are dealing with chronic illness friends and family exit from your life at an astonishingly rapid rate
I love having this forum to come to for solace and I too salute our moderators for making it all possible . :waving; :waving;
-
:grouphug;
-
Brenda, I hope things go well and that Laurie gets out of hospital soon. Dont beat your self up about not noticing any signs, when they are ill all the while, some signs go over your head. Hope the antibiotics kick in fast and make him feel better soon. Go on spoil him again.
-
((((((((Brenda))))))) Prayers for Laurie, and for comfort for you. I pray all that all will be well soon. :( :cuddle;
-
Brenda Don't worry about missing signs. It took a trip to the ER for someone to find I had fluid on my left lung. Now - how many times between Dr appointments and 3 times per week at dialysis did some one listen to my lungs and NOT hear 1 1/2 liters of fluid ????? And these were pros that should have known the "Signs". Grumpy
-
Sending prayers for you and Laurie! Hope the antibiotics work quickly! Give yourself a little break while your patient is being cared for by others. Then you can start fresh when he gets home. Everyone deserves a little rest once in a while, especially those who care for someone with a chronic illness! And there should be no guilt about missing that infection. Dialysis patients can go from fine to very sick in no time. You are taking excellent care of him! :grouphug;
-
Damn Brenda,
I'm sorry to hear he ended up in the hospital. And the PICC line. Hubby just came out of the hospital for a pretty gnarly toe infection and surgery to remove part of the bone, and he too has a PICC line. I fought them like a tiger to keep them from installing it. It's utterly pointless when I have perfectly healthy, less infection risky access to give him the antibiotics at home. His Neph even ORDERED it that way. But alas, policies have not caught up with folks who take serious control of their healthcare, and for once, I was NOT able to exert my medical will on the 'Hospitalist'.
Hopefully, he'll be home soon, and you'll be dispensing antibiotics and all will be well. :)
-
Oh Brenda, I am so sorry for all of the rocks you have lost in your life. :cuddle;
-
I will admit to having anger issues in-center, always verbal. They believed it was stress and created a policy to remove people from the center that had the potential to put staff at risk.
I believe all staff were inexperienced at detecting chemical imbalances which I believe were partly to blame. The other issue was the nurses couldn't needle to save themselves and the pump-speeds were incredibly low resulting in complications. On my wife's first attempt in the training centre her needling achieved a 350 pump speed where most in-centre staff were limited to 280 - makes a huge difference.
I've been on HomeD for 6 months and have never fought with my wife over anything. For me this helped as well as prescribed vitamins to maintain those pesky chemical imbalances.
I am aware that the removal of independence is a major factor in stress. This is a hard topic to deal with. The other point to remember is that toxicity affects the brain just like any other organ, possibly even more so. Dialysis patients can find it more challenging to handle pressure situations. Even with 40 hours per week of dialysis I sometimes struggle at work with high pressure challenges, and small outbursts of frustration result.
My only suggestion is to try and get the root cause if you haven't already. It might not be what it appears on the surface.