I have been the sole caregiver for my father now for the past five months. Why do I feel guilty for not wanting to keep him company?

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He is bed ridden and I cook clean garden, bathe, change etc. not to mention his constant companion. Recently I have found it depressing and frustrating to hang out with him the way I had been. Sometimes I will be in there for hours watching T.V. right next to him and I'll get up and he's suprised to see that i have been there all along. Other times It just gets frustrating that we have watched the same Western three days in a row but it's all new to him. Lately I have been in my room or in the living room watching my own shows or sewing. He doesn't seem to miss me but I feel terribly guilty. I see the change slowly becoming worse and realize it's innevitable. His initial prognosis stated he should have been gone 3 yrs ago. He has been through all the stages of death including renal shut down and nutrient withdrawl. He came out of it 4 months ago. I knew it was a temporary thing since he is riddled with cancer...How can I not feel guilty or try to force myself to keep him company all da

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I know caregiver guilt to my core, but you (we on this site, as well) don't deserve it. You need someone to spell you. Is he on hospice care? In my opinion he should be. They would support you as well as him. Please look into it. Most insurances cover it, and Medicare would, as well.

Good luck, my friend. You are a fantastic person. Please get support for yourself.
Carol
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Hi--to me this sounds like a case of caregiver guilt--so I have taken upon myself to share some tips with you:

these steps may help you get through the caregiving journey: I personally have been there-gone on this journey-and thus I have a good idea what you may be experiencing..


Take care of your OWN health. (Very important)
Take care of your mental and physical health. You are number one. Caregivers can not take care of other people if they are not taking care of themselves first. This means taking time to do the things that make you feel at peace and relaxed. This may be reading, working on a hobby, having lunch with friends--whatever it is make arrangements to do it. This may mean enlisting the help of friends, family or, hiring someone. Some communities have free respite care available. Check with your local agencies to see what you qualify for, and stive for some "ME TIME"..


Reject all negative comments. If family members criticize you for the way you do things, tell them that they're welcome to come over and help. If they criticize you for doing something to care for yourself, let them know that you're really going to appreciate them taking over two days a week so you can rejuvenate. Remember, if they could do it better, they'd be doing it.


Make "I'm doing the best I can," your mantra. There are no rewards in being a martyr. You are the only person who's going to take care of you.


Don't fall into the "I'm the greatest trap." This is when people will praise you generously for the sacrifices you're making. ," You're such a saint to take care of your parent 24/7. I don't see how you do it. There's surely a place in heaven for you."

I sure hope some of these tips ring true with you-and you find some release in feeling guilty---Reach out to this forum and to others for support.

Best
Hap
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CLOSE BY - you know how a kid will walk away from a parent and then look back and see where their parents are? Kids will also play happily by themselves, then suddenly look up and notice mom is gone. As parents we love that bond.

The course is now on fast-forward rewind and your dad has gone into his own little kid world, soon he'll be like an infant and go back to infinity. You're close by, that's plenty.

How do I, a stranger know? Because when you grew up, he gave you the love you are now returning. Take time for yourself -- he doesn't mind at all. He loves you. Guilt free.
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Nikka: My heart goes out to you. When my mother first moved here, it seemed like I was at her home more than mine. I made the mistake of treating her like a weekend guest as opposed to someone who should find their own interests and sources of entertainment.
Your situation is more serious because your father is in the end stages. I know you feel as if you need to be right there every moment in case he needs you, wants company, or slips away. However, the reality is that we cannot control any of these things. Many people in this forum have written that they felt the need to be by their parent's side every moment so that they would not "die alone." Then, when they left for a few moments or asked hospice to step in, the inevitable happens. Several hospice workers have said that it is a family member's way of sparing their caregivers grief by not wanting them to be there to witness their passing...a last loving gesture.
I agree with Carol - you really need some distance from this grueling and isolating pace- even if it is for a few hours. Could you ask a family member, friend, neighbor, hospice worker, to sit in for a few hours? Or have a paid caregiver come in for a few hours a week? It would give you something to look forward to and allow you some severely needed "me time."
Take care....let us know...I am in awe of your commitment to your father.
Lilli
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I am in the same situation but it's my mother. Yes, you should see about hospice. You said he should have been gone 3 years ago there is a reason he is still around. Only time will give this answer. Like you some days I get so tired and short with my mom then I feel guilty. You have did incredable job let me tell you I go through same thing every day and it's been 8 months now I can't believe it. If you can find some time to pray or meditate. One day your dad will be gone and although taking care of him is difficult at times you will always have this time with him to look back on.
Your dad most have did something great because God sent him an Angel to take care of him. Sorry if I mispelled a few words only get 4 hours of sleep a night. Your doing a great job!!!!!!!!
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It's really hard to find the balance between your time and the time he deserves from you. But first of all, put the guilt away. It's a normal reaction but you must realize that you cannot be SUPERCHILD, the situation is far too difficult and complex for anyone to be able to satisfy every aspect of it.
I've been watching my mom stare at me for the past 3 years and I usually just wait until it hits my limit, then I find some way to cover her and spend some downtime, then start all over again.
I'm just taking it a step at a time and trying to keep in mind that I am part of all this too.
Honestly, my biggest fear is what kind of state I'll be in when it's over. Will I Know how to get back on my own two feet and be able to start my life again, Alone?
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I had a very positive experience using hospice for my mother; my sister-in-law was not as pleased with her experience with a different hospice in our area when her mother was dying. You are ostensibly free to end the relationship with one organization & use another if you find you are displeased, but in the very late stages of life, another organization may not agree to take on your father's care. More than likely you will find that enrolling your father will be a positive experience for you both. And, whenever possible get OUT of the house when volunteers come to visit/sit with your father and nurses/aides come in to give him personal care...even if it is just a quiet time in the library to flip through magazines or a coffee bar to sip a favorite drink.
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Start an on-line calendar (Google offers one free) so that friends and other members of your family can sign up for brief periods to spell you. Many people like to help out but are afraid to ask if you need help because they fear long term commitments or fear they will be left in a difficult situation that they are not prepared to handle. The calendar provides specific short time tasks (like cook and serve lunch or watch TV show with dad) If you have not contacted HOSPICE already, that would be good to do. They have lots of experience dealing with situations like yours and can also train people in how to approach situations like discussing death and creating a heritage of memoris to pass along.
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That ON-LINE CALENDER is a great Idea! Perhaps someone here at agingcare.com can add a link to one?
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Ummmmm.. I get the feeling that you do not WANT to be with your father, keeping him company. YOU'D RATHER BE DOING SOMETHING ELSE, SOMEWHERE ELSE. Ok, that's fine, but just admit it....at least to yourself. You can't force love either toward a parent, brother,child, spouse, or friend. Get someone else to come in there and be with him and get sometime off . I personally couldn't spend enough time with my dying husband. However, I know that that is a different type of relationship. I'd give my right arm to have him back, sittinging in the chair watching the same ole movies, spoon-feeding him and cleaning up his dribbles and doing his ever increasing laundry ...

Still crying.
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