Struggling to balance caring with guilt

[homepartnerctl]

Its been 6 years with Dad and I am struggling. I love him and want him to be well but I have to do everything and work full-time. My friends are tired of me declining invites so they never ask me to do anything.  Dad is declining and we don't get out much. So I work and go home to do dialysis 5 times a week and on our weekday off I have to work late to make up for the other days.  Saturdays off are jammed with trying to take care of home, errands, and have a little life.  Haven't had a vacation and noone seems to understand that is due to the circumstances. I get so frustrated when people say just go away like I can just leave him without HHD for days. I feel so guilty and find myself getting short and feel angry more than happy.

Does anyone have any suggestions or are you in the same boat?

[okarol]

Are there no other family members? How long do your treatments take? Is he always home? Can you invite friends over?
Sorry for all the questions but it helps to understand and maybe get some answers. It's very tough, what you're going through.
Sending you lots of {{{HUGS}}}

[Jean]

Have been in that boat, but have no suggestions. Feeling guilty is soooo normal and if you didn't we would worry about you. Okarol has some good ones, see if some one can take your burden away, even if it is just one or two nights a week. HUGS to you and DONT feel guilty!!!

[homepartnerctl]

Only other family is my elder mom, she tries to monitor but can't handle any alarm or deviation from normal. His treatments are 3 and 1/2 hours so it take a little over 4 hours start to finish.  The center is of little help they keep reminding me we are privileged to have this type of program. I know that HE WILL NEVER go incenter if I can help it. 

thank you for letting me vent, I do not want to sound like an ungrateful person, but sometimes it feels solo lonely and if I said what I think I would hurt people's feelings.

[Poppylicious]

So sorry you're feeling like this.  Is there any entitlement to respite care so that someone else can take over for a week or so to give you the time to relax/go away/see your friends? Could he have in-centre haemo for a while (not forever, just a few days) just to give you a break?  You do need to take care of yourself as well.  Of course your dad is privileged to be able to do HHD but if you become so rundown that you can't help then it defeats the object!

I too was wondering if you could invite people over.  Perhaps if your friends see what you do every evening - and how busy you are - they'd be able to offer you some sort of support?

And for what it's worth you don't sound ungrateful at all; you sound very human!

*huggles*

[nursey66]

I feel in the same boat as you, except my hubby is doing in center D so I don't have to deal with all the Home Hemo stuff. [his choice]  But I am 67, and just retired from full time nursing in May, and can't really go anywhere, either. Everyone say" take a trip" . Well, he was in the hospital 4 times in the last 5 months, so I really can't go anywhere. It's day by day, as I am sure it is for you also. It is really hard when others do not understand that you can not just pick up and have a life like before this disease hits. It affects caregivers ,too, big time.  Take care, thinking of you as you care for your Dad.

[billybags]

I agree with nursey66 there are lots of us here who would love to go away for a little break and can not. Guilt we all have plenty of that, but what can we do, I would not leave my husband if some one volenteered, I would feel guilty

homepartnerctl
 I feel for you, it can not be easy to work full time and care for your dad. Your whole life is taken up by working and caring you are bound to feel pis*** off and feel guilty with the thoughts going through your head. I do not know what the answere is. Do your friends realise what pressure your under. You should make your self take at least one night off a week, who will look after him if you take ill. I will be thinking about you.

[homepartnerctl]

What an amazing support you all are. I especially like the invite friends over, I never thought of including them and letting them see what we do.  I soooooo much appreciate your wisdom and kindness.

[moodyc]

I am in the same boat with you. DaVita will not let us have a hospice nurse, because everybody has to be trained on the NxStage machine. I work daily, and go home and put my husband on the machine. His day off is spent running errands, cleaning house, paying bills, etc.  Everybody says "let me know if there is anything we can do".  Come help me clean my house, run the dog to get his shots, grocery shop, go pick up meds from the pharmacy.  I've started smoking again, plus I am on medication for anxiety, which has helped. It's rough when I'm trying to fix dinner and the machine alarm goes off - I've ended up with soggy/burned food.  I have to stay glued to the house while he is on the machine, but I'd rather have him there with me than in the hospital.  Good luck and keep your chin up.