As my father's daughter and as his carer, I feel so inadequate and believe me, I AM inadequate. I don't know what's best to help my Dad. For instance, he's never been one to talk about emotions and now, I'm leaning towards thinking he'd prefer if I didn't discuss anything emotional, such as saying he was the best Dad for me in the world. I've given him lots of greeting cards over the years that said as much, and I'd underline some passages but our relationship has always been loving without discussing the love. I don't want him to feel like I'm saying such things NOW because he's close to dying. I hope he's NOT close to dying, perhaps selfishly though.
Another part of me feels that I'm keeping him alive despite his having no quality of life anymore. His much younger wife was understandably very depressed and overburdened at the time I moved in with them a year ago to help out. She works full time and with that and helping my Dad, she was barely cooking or cleaning. When I moved in, soon thereafter, Daddy had a UTI which his wife OR the family doctor didn't detect but I did. I said he had a UTI even the very same day the family doctor said he didn't. The next day, Daddy was riding in the back of an ambulance with the UTI. I know he's been much better off since i've been here but am I keeping him alive when if he was in his right mind (the psp and a small stroke have given him slight dementia) is that what he'd want? I feel like he would NOT want to live this way but he never says he's ready to die or anything. He says very little about anything now. And it's not up to him or me when his time comes to an end.
THEN I turn around and go from feeling like I'm keeping him alive albeit barely, and if not for me he'd already be released from his suffering, to realizing I don't know the best ways to help him. Even trying to roll him from side to side in the bed is so hard for me and I try to make it easy on him but, I get so nervous that I'll hurt him, because he's getting more and more fragile.
His wife occasionally leaves for overnight because she ''needs a break,'' and I feel so nervous being alone to care for him. He has a carer 24/7 for the past year. There are 2 part timers and his wife and me. I don't work outside the home at this time. I don't know how those of you manage who do it all on your own. I think you're superheros!!!!! Anyway, can anyone relate to these weird conflicting feelings I'm having?
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GonnaMissDaddy
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Nothing weird at all about those conflicting feelings. I relate to it all. You are doing a wonderful thing, caring for your father and his wife as you are. Hang on. You will get through. Love, ec
I think that you are maybe feeling overwhelmed by what is happening and are taking on too much maybe of the burden. Be guided by your father as if he hasn't mentioned dying himself he may not even have thought that he would rather not be here. Life is precious and no matter how bad things get the person actually suffering the illness may not want to give up on it all. Anyway we have no choice realistically other than to let things pan out at their own rate no matter how bad things get. Have you seen a councellor or seen a doctor in case you need anything for depression. I could cry at the drop of a hat as things were so overwhelming for me. My tablets help take the edge off things and I am able to carry on. May not be your chosen route but there is nothing to be ashamed of if you need a little help now. Please if you can try to get a break for yourself. If carers are coming in then a few hours just having a rest and going out may help. Our worlds shrink to almost nothing when we care caring so intensely for others and please take time to have something just for you. Sorry to go on but all the above helped me when I was overwhelmed. Everyone is different so I am hoping you can find something to help you through these difficult days. Love Pauline xx
I can relate to parts of what you said. I was my dad's carer and he never told me he loved me but I'm sure he did. Neither of my parents talked about love. They would say if they were angry, upset, frustrated but never mentioned love. I did the same as you, sent him cards with loving words but he never commented. When he was ill I never spoke of love as I felt he was uncomfortable talking about it but I did manage to say it in the last few minutes of his life but it felt strange saying it to him. I tell our sons I love them after every phone conversation or meeting, as they do to me but it never felt right with my parents.
I'm not quite sure what you mean by keeping him alive. If you stopped doing anything for him, it would probably be a very slow miserable death. I'm definitely keeping my husband alive as he is PEG fed but as his heart, blood pressure, lungs, and other organs (apart from his brain) are all very healthy, he would slowly starve to death, his skin would break into sores and it could take 7 weeks, less without water, but what a way to go. He has had several UTIs without antibiotics and has recovered. If he has a chest infection it has been agreed feeding will stop but as he said originally he didn't want to go to Switzerland to end it, I'll care for him as long as I can.
Do you use a slide sheet to help roll your dad? My husband is still a big man, weighing the same as me, but with a slide sheet and turning him like you would putting someone in the recovery position, it's not too difficult. He is very stiff and can't help me at all, so bending his leg can be a problem.
How about you getting a break. If his wife can go away overnight, why don't you? Before we had night carers, I'd decided to pay for someone to come in and I was going to book myself into the local hotel for a night. It didn't happen as our situation changed. Everyone needs time off. When his wife comes home for work, can you get out in the evenings? Think to yourself, how can I make my life better in the situation I am in now. I hope you have the courage and strength to find a way.
Hi - it's OK to have all these feelings - the thing is, you can't just stop feeding them or treating them with meds - talk to his doctor, make sure you understand the concept of DNR (do-not-resucitate) - if your dad can talk, ask him - otherwise make a family decision: how much intervention is too much, will you use the option of PEG feeding (there are posts from me and others on this) - make sure your main neuro doctor and your family agrees on the question of quality-of-life vs longevity-of-life
My dad and I were the same - he was extremely loving without saying so - towards the end of his life, when he became bed-bound for some 10 months, I took care of him 24/7 (with help from my mom) - it's imperative to have other full-time support, if possible so that's great
Plus, my mom was very attentive to my dad too but she missed some small things too, which can be major problems, like constipation, hemorrhoids, turning sides, changing as soon as there was a need - I think children have a special affection for a parent that a spouse does not have
You are there and already helping so that makes you a superhero too - best wishes and take breaks, whenever possible, they will help you keep fresh and you will be a better help for your dad
Hi, of course we ALL feeling inadequate, I know I do all the time. No matter what you do, it's wrong, what worked yesterday, as sure as God gave little green apples, it's not going to work today. So you are left thinking, WHAT, WHY, HOW??????
I agree with the others, it's sounds as if you need a rest. None of us, no matter how much we love the person, can care 24/7. You will be affecting your father's well being, by trying to do too much. It's about time, you had a night off, an evening out with your beautiful daughter. Get as far away from PSP as you possibly can. That is not saying you love you Dad less, it's saying, I love my father, I need a break, so I can go on loving and caring for him, in the manor he deserves. Your father may not have full capacity now, but I bet he has got enough for him to notice how tired you are and there is nothing he can do to communicate that you need to stop for a while. Put yourself in his shoes, inside he is probably screaming at you to go out, take a coffee break, basically look after yourself.
Your Dad needs you so much, please don't let him down by crashing, because you won't take a much needed break. I speak from total experience, I am so tired, that my husband is not getting looked after properly anymore. If I had any strength left, I would do something about it. Please don't get yourself into this horrible, dark place!!!
There have been some very excellent replies to your situation from members on this forum, I'm sure you'll take something away from them. As someone afflicted with PSP myself, may I be sold bold as to suggest that you go right ahead and tell your father how much you love him... in fact never stop. You'll never want to regret not telling him how you feel. You might just be surprised and he may warm up and open up... like I said- never stop.
The first thing that gets me is the love part of your story....YOUR DAD KNOWS YOU LOVE HIM...how do I know this...because you are there trying to roll him; being there when everyone else cannot be...because you are here right now suffering how to figure out how to say , I love you" He never told you but you knew he loved you....you don't have to verbally tell him what he already knows...though I don't think it would be horrible if you did.
We are all keeping our loved ones alive...with the very same desperate question...."am I doing the right thing" ....I don't know how to answer, this I do know i am doing the best I can to provide for Bruce...and it sure sounds like you are doing the same for your dad.....there is nothing more that we can do so with that give yourself a hug of confidence you are doing the best for your dad. That is all you need to do; not try and figure out what your dad wants...unless of course it is written...
He has help 24/7 you mean other help or you? I say give yourself the same break as his wife gives her self! You deserve it...Put PSP n the shelf and go and have some fun or some rest or not just those two things.....
AVB
Wherefore take unto you the whole armour of God, that ye may be able to withstand in the evil day, and having done all, to stand. Ephesians 6: 13
THank you all so very much! And to clarify a couple things. Daddy and I DO indeed say I love you to each other, but he's always been unable to talk about it. Once many yrs ago when I was a kid, I was having a moment/mini meltdown, and through little girl tears, told him he didn't love us (me my mom and 2 siblings,) because he didn't go to church with us (he did eventually start going to church many years later) and because he cursed (duh, hey I was a little kid what can I say, except It was probably my early PMS rearing it's head ha! So here's my tough, strong non-emotional father, who BURST INTO TEARS, and said, blubbered out, that he loved us so much and OMG! I knew in that moment I wouldn't EVER EVER cause him to cry like that again!! I never again felt the need to hear him discuss his love for me!! WHEW.
And someone (in these replies) said (paraphrased,) grown kids have a special affection for a parent more so than a spouse. I SO agree. I feel like Daddy's wife feels tremendously burdened. In a way I don't blame her. (SHE is his security blanket ever since the psp has gotten so bad.) I no longer have much of a life but I don't feel it's a burden. I feel it's AN HONOR to be in a position at this time in my life to be back home with my DAddy. Let's see.. what else popped into my head reading your replies... I do all the cooking, cleaning, laundry and grocery shopping so I'm at the dang grocery store about every other night which does get me out of the house. I throw the ball for my dog for 10 minutes most days, gets me outside. I wish Daddy wanted to go outside because I could use the rolling hammock thing to get him into the wheelchair and I think he could safely sit but he gets SO exhausted SO easily and he gets lots of sleep. Psp is such a very evil thief.
And thanks to you all for thinking of my needs, that's sweet. And I have had some overnights away, but it's to drive 3 hours to my little old island house that I rent to vacationers, through an online company called airbnb. So, I go there and work and leave feeling like I didn't even scratch the surface of what the house needs, and I come back home to my Dad's house and being gone puts me behind too. BUT it helps to get away and do physical work. I only wish Daddy could help because he was SO good at figuring out how to do just about ANYthing. He'd be SUCH a big help to me now when I need that help so bad but, those days have gone and I didn't have a need to ask him to do too much for me and I'm glad. He did a lot of work for his wife's family over the years, for free, so he had enough to do that he didn't need to worry about me. I no longer have that luxury but that's the way the cookie crumbles and being I'm my father's child, I'll carry on. Right now I live one day at a time and for now, that's ok. I'm making it work with help from Above I'm sure.
Thanks dear sweet people of this forum, for your loving support. May peace be with us all.
I'm going to all psychologist here and please feel free to tell me to shut up or that I'm wrong.
Because what I am going to say is 'standard' stuff, but not one of us is a 'standard human being'.
You are having to cross many boundaries to deliver care to your Dad.
First you, the cared for daughter is now the carer. This most likely highlights his disability to him and it turns your roles on their head. Thar is likely stressful for any daughter.
Next he has a wife who for whatever reason is not able to deliver the care one might expect a wife to deliver. Does she feel bad about that? Does it create tensions? (Stressful?)
Then you, the daughter are stepping in a doing 'her stuff'. So again you are crossing her boundaries, sort of, and that must, again feel 'uncomfortable' for you.
Finally doing the care is damned hard work, both emotionally hard and physically taxing.
But y'know... every time you take him food, or a drink you are telling him he is safe and that he is loved. Words are not really necessary - He will know.
I feel inadequate most of the time as a carer... I can never do enough... too tired, or I get it wrong, or I forget and I just want L to be herself again... Because no matter how adult we are there is a still a child in some of us who wants to magic things better... and we can't.
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