Need some encouragement

[McJetter]

My husband is on hemodialysis now after having been on PD for about 8 months.  I am having a really hard time maintaining a positive attitude.  I know my husband is sick but he makes no effort to understand that this is hard on me too, not just him.  Our entire life has changed and he's really just gotten mean and bitter (we've been married 15 yrs).  He NEVER has a good day, he's NEVER positive, it's always poor me, why me??  I tell him he has MANY things to be thankful for but he can't see past his self pity.   He thinks that I should be at his beck and call because he's "sick".  I work full time and go to school, he's on disability. He does NOTHING to help around the house, and there are many small things that would help.  I think he's not got much stamina and is losing strength because he lays around and watches TV all day.  I told him get on a schedule, find something to do everyday, have a purpose everyday.  He's on 52 and I'm 50 I don't want this to be my future.  He also won't take any responsibility for his health, I know there are many issues that are out of his hands, but he smokes a pack of cigarettes a day and he is extremely overweight.  Help...  I don't know how much more I can take!!!!!

[G-Ma]

I am so sorry for you.  We have many caregivers on IHD that I'm sure will jump on here and talk to you..we are all here for you to lean on.  I was a caregiver in another life and it is not easy.  I was lucky in that my husband generally had a positive attitude and always wanted to care for me..he would get upset if I did a load of laundry.  I was also going to school full time evenings and working full time days and the house was always clean and food on the table when I got home and lots of hugs.  I stored up those hugs for when he couldn't any more and I still miss those.  We did go for counseling in the beginning after his first amputation and that really helped both of us, so that is what I suggest.  Try to keep the lines of communication open.  We are always here for you.

 

[rose1999]

Your husband sounds depressed to me, he needs someone to talk to who is 'outside' all of this. You also need to be able to pour out your fears etc and this is an idea place for that.

Sadly when people are ill they often tend to take it out on the ones they love.  I had this with my late husband who had cancer, he would be short tempered, irritable, even downright nasty sometimes but I knew it was the disease and that deep down he loved me.  It's now the same with my Dad who has major problems in addition to dialysis - some days whatever I say it's wrong!  I try to hold my tongue and to take one day at a time - sometimes one hour at a time - it is very tough but at least we carers can walk away from it even if only for 5 minutes in the bathroom or something, the patient has their illness with them every minute.

I too wish people would quit smoking, but sometimes it is the only 'pleasure' they have and they may feel that if they are going to have a short life they may as well live it the way they want,.  Smoking or quitting smoking is one of the decisions that is in their hands when so much is outside their control,  so try not to let that get to you.

I don't think I've been much help but I wanted you to know I understand how you feel, it is natural to feel like this and sometimes coming here and having a good old rant helps enormously.   

[Chris]

Only thing I can suggest politely is if he wants to smoke and has you get the cigarettes, STOP buying them for him. Make him get up and go out to get them. Don't be doing everything for him, he has to take responsibility for his actions and if he wants to continue to smoke, it is at his hands and not yours.

Maybe he needs to talk with other dialysis patients who are active and started out the same way he felt to change his mind set. You shouldn't get burnt out over his inactions or your health may begin to suffer as well. See if there are programs offered by the dialysis clinic that may help. As G-Ma stated, hope other caregivers chime in on this topic.

[twirl]

I taught school for the first two years on dialysis and I was so much happier than I am now
- it got to be too much to teach and go to dialysis and get home about 10pm
- I am on disabilty and I hate it
- I miss my life
- sounds like your husband is depressed and believe me, he has reasons to be
- but he should look at the positives in his life and you are the main one
- you have to think of yourself also and tell him you can not live like you are now
- are you a student or do you teach
- I know my husband does not have it easy with me being the baby that I am
- sometimes, I have to stop and thank him
- you know. like stop and smell the roses
- not every sick member has a caretaker
- he is one of the lucky ones

[kitkatz]

Tell him you love  him over and over again. Snuggle up to him.  I know this sounds crazy, but if you make an effort to show him he is still very much a part of your life, he might come around.


If that does not work I am all for kicking his ass!   

[MandaMe1986]

First off let me say we are all here for you. Sometimes it helps just to let it all out and cry a little.  I do agree he sounds depressed.  My dad gets like that from time to time.  But he dosn't believe in depression so all I have to do is tell him he is being depressed and he makes himself get up.   I don't know what else I can do other then let you know we are here for you so feel free to come and rant as much as you want. 

[Normie]

I think he is working through his grief.  It is very difficult to accept that you have kidney failure and all that goes with that.  There is the fear of dying.  There is extreme loss.  People have different ways of handling grief.  I have had a bad time the last 18 months.  My poor hubby is sometimes besides himself and gets upset that I am upset.  I keep telling him not to take it personally.  I think that is what you need to do.  Don't take it personally.  He is upset with the situation and not you.  If he can't work through his grief he may need a counselor.  One person has to stay calm and in control.  If you can't do that you may need to see a counselor too.  This is just my 
I hope things get better for you. 
This is the right place for support.     

Normie

[monrein]

I agree with others here who've said that it might be helpful for you to talk with a counsellor (or unit social worker if they're halfway decent) even if your husband won't go himself.  This absolutely affects you as much as him in many ways and, in my opinion, possibly more.  I say this based on my experience of being the patient and watching my husband have to accept limitations that ought not to really apply to him.  When I'm feeling crummy I don't feel like doing many things that I usually enjoy a lot but a caretaker still feels like having a "normal" life and still wants to live to the fullest but is artificially restricted by the patient's needs. 

It sounds as though smoking is the one "activity" or diversion he has left to him and he certainly sounds depressed, not uncommon for us renal patients.

I hope you can find some ways of carving out some time for you to spend with friends, family or other healthy people so that you can return to the situation with more reserves left over to deal with your husband's current state of mind. 

Please know that we care about you and admire you for sticking around in what sounds like a terribly difficult and painful situation.  Also know that you can rant here whenever you need to release some pressure. 

[Yvonne]

Hi Mc Jetter I do wish you were living close to me so we could give each other a hug and a shoulder to cry on, your husband sounds just like mine, only he does not smoke but he drinks but I have made him cut down a lot and he is being quite good about that. I think us carers are out on a limb, relatives and Friends must get fed up with us talking about our other half. This site has been a great comfort to me I just hope I'm not boaring every one to bits at this moment as I'm posting every day with John being in hospital. Yvonne the wife.

[RichardMEL]

yikes. This is very difficult for you (and him) to handle. The problem is I feel if you just keep hassling him to do this and do that or think positive... not bad suggestions or requests AT ALL.. but he might feel it's more "stuff" he has to do.. just like dealing with dialysis, and the diet, and fluid restrictions(if he has any) and all that... just more pressure on him. I don't really know what to say. Maybe talk to his neph about it? As others have said he sounds depressed and could well do with seeing someone (though it sounds like he will resist that idea).

At the end of the day it IS his responsibility though to deal with his own health. There's only so much you can do and I feel that you have to watch on while trying to keep things going at home working hard and doing the stuff. It is difficult that he has no understanding that he CAN contribute (and should). Yes, absolutely, ESRD/dialysis does sap your energy because of the anemia and you can come home from a session feeling like all you can do is sleep. I often come home and have a nap.. but I also work full time the rest of the week(which is important for me to focus on something positive and not just dialysis). I'm not saying he should be working etc but it should be possible to do more than just sitting around watching TV and not even doing little things around the home to help.

Has he been given any indication or suggestion that he might get on the transplant list? That would be something positive to aim for. I'd suggest a good start in that direction would be if you can talk to him about that and note that smoking is not a good idea. It probably also releases more toxins into his blood.

I hope things can improve for you. 

[kitkatz]

Yvonne and MCJetter, it is never a bother to tell us all about your significant other on this site.   That is what it is here for.  I hope things will get better for you both.

[Sluff]

Without repeating what everyone else has said I would have to agree that he is depressed. I can absolutely understand things from his point of view because I myself may appear to act the same way he does. Here is my view. I don't expect anyone to do things for me unless I am totally incapable but as for the depression portion of his actions, I'll bet in his own way he is trying to think of a way to beat this disease. When some people mistake my actions for depression, I am actually in deep thought trying to figure out a way to get around whatever limitations I am experiencing. Now I am pre-dialysis but I do have my share(and then some) of health related limitations and it is hard to except sometimes. The advice of the members who responded before me will work, you just need to give him space to face his limitations. He will surprise you in time. Attitude is everything. He will come around in his own good time. Please give yourself some alone time to do something nice for yourself. A day at the mall maybe or visiting a friend would give you a break you need.  

[lola]

I as a caregiver feel your frustration. My husband has had a VERY hard time accepting D as he was very active and know it's hard, I at times don't know how he still works but he does. You should talk to him and his Dr's about maybe some counseling, and you need to tell him how you feel. Sometimes they forget how hard this is on us and need to be reminded or  

[thegrammalady]

 

[del]

How long has your hubby been diagnosed with kidney failure.  The acceptance of Kidney failure goes in stages.  One of those is "why me".  As others have said it seems as though he is depressed.  My husband was diagnosed with kidney failure over 20 years ago and has been on dialysis for the past 12 years.  I am very lucky because most times he has had a very positive attitude.  Notice I say most of the time..  He went through all the stages of acceptance of the kidney failure including "why me at did I do to deserve this". Hubby has has had his depression episodes and he finds keeping himself busy really helps him.   Try to give your hubby a little time and space so that he does not see it as nagging and then try to talk to him and tell him the way you fel. I have given hubby more than one "pep " talk through the years!!! 

[The Wife]

Big hugs to you...

[paris]

I like what Del said  "give him time and space".  That is what I needed the most (and still do from time to time).  I need to work things out in my own mind without my spouse telling me how to deal with things.    I handle things quietly, he is a talker.     Take care of yourself right now.  Enjoy doing something you like.     Give him time and space      And keep coming here and talk to us!