I have been taking care of my dad now for 9 months. He is on hospice because he has colon cancer (and probabaly heart failure), but decided to not have it treated. He has had several ups and downs, and he almost passed away one time.
He recovered from a major decline, and now he is almost back to the way he was before his decline. He has been reevaluated twice and put back on hospice each time becaue of major edema.
I'm exausted. I barely have any help from my siblings and can rarely get out of the house. Sometimes it's only once a month that I can get out and that time is only used to get more supplies (like groceries), pay bills, and run errands so I can go another month.
I feel like I have lost myself completely and like I am not me anymore. I had to give up school and work. I feel so disconnected from who I used to be. I'm angry and upset all the time. I wake up and see that my dad is still doing well and I get so upset when I should be happy.
I just can't get over the feeling of dread that I may be in this situation for years and I may never get back to my life and what I was working towards. Then I feel guilty and like a bad person for not being more greatful. But sometimes he just looks and acts like an empty shell, and not like my dad. I just feel like everything I used to be is gone and now I'm just this robot that repeats the same thing everyday.
Help! How can I get over these feelings and face my future, knowing it's going to be everything I didn't want it to be?
You've been here long enough now to have read ad nauseum my whole litany about guilt. It's inappropriate. You didn't cause this and you can't fix it. It is a kind of hubris to think that sacrificing your own life on Dad's burning funeral pyre will make anything miraculously change here. Your Dad has a failing heart. And a cancer. You are GRIEVING, not feeling guilt, and so is he. You are just a flawed human being, just like every other human on earth; you aren't god. And you aren't a Saint, and it's one ugly job descriptions anyway.
Your father has had his life. Now you have your life. And it is selfish for a parent not to recognize that. Your father belongs in care now. HE should be the one telling YOU that. THAT is his job. The parent takes care of their children. The children passes that care to any children THEY bring into the world and so on.
You have two choices here.
#1. Be honest with Dad to tell him you need to live your own life, and will be there to visit him and will help him apply to find a place, but that you must have your own life
#2. Stay for the amount of time it takes Dad to die. Prepare for the next steps in your life. That is it. Your staying hurts you, but it doesn't help anyone else that I can see in your note to us. It gives you time to prepare for life without him. To face that he is dying and to assist him in facing it. To get together all documents that need doing, to do all the things that need to be done.
I recommend therapy for you. You are very inappropriately taking on fault and causation here. That is both a waste and self-harming. You need a more realistic view of what life and death are, and of what you cannot and can do. (Serenity Pray doubletime). I want you to speak to Hospice both CLERGY and Social Workers. You need grief counseling. They are paid MASSIVE AMOUNTS OF FEDERAL MONEY to provide clergy and grief counseling. Make use of it.
I am so sorry this is ongoing. But as my brother and I BOTH said when he got Lewy's--we BOTH wished he had died first. But we didn't have a say in that. And that was the honest truth. My brother was the best man I ever knew/hope to know. But I PRAYED for him to die (and I am an atheist) before Lewy's could take his mind from him and all control over his life. And he got sepsis and DID die; we got hospice and we LET him die. And I will be forever grateful that he did. I will miss him and carry him with me every single day, but I am grateful he died before the ravages of his disappearing mind could do him more harm.
When they say that truth will set you FREE, they weren't kidding. It will.
Why in the name of all that's holy would you wish your father to live, suffering as he is while you stand silent witness to that pain?
He won't like it but as a parent myself, I'd never want my care to burn out my children. If he doesn't care enough about what it is doing to you, then stepping completely away should be *easy*. Then call in social services for his county or APS so that they can put him on a track to get a court-assigned 3rd party legal guardian.
You can't get burnt out unless you agree to it. You will need to do uncomfortable things that people (aka family members) won't like, but so what? If they don't like it then when you step away maybe they'll move in to cover and then get a taste of what you're going through. But don't return even if they beg.
But if you stay in it, you are choosing it and that's on you. You must find a healthy boundary and defend it because your life literally depends on it.
I wish you clarity, wisdom and peace in your heart that reclaiming your life is the right choice.
You should not be doing this anymore. If it's your dad's house, you can move out and he can get paid caregivers in to help him, or move to a facility (at his expense). If it's your house, you can move him out and into a facility.
If for some reason you have to continue sharing the same home, you can still get a job and re-enroll in school, and have caregivers come in.
You shouldn't have to start from scratch in building your life after your father dies. Do it now, You've given up so much. Don't continue.
So PLEASE talk to your dads hospice nurse today about getting that lined up. I believe your dad can use hospice respite every 90 days or so, which will give you the much needed breaks you so desperately need.
Anytime someone is caregiving for a long time they do tend to lose themselves along the way, thus why it's so important for self care along the way, which I know can be easier said than done, but one must make themselves a priority if they are going to survive and be strong enough for the journey ahead.
So let's start that self care now, by calling your dads hospice nurse and getting that 5 day respite set up ASAP.
Honestly speaking, caring for aging parents is definitely “ not” like caring for children.. it’s a whole other dimension!
I may think differently than the most of us and I’m okay with that… I am who I am. 😊
We want to care for them just as they cared for us as newborns… but, “we can not”… not fully, they are full grown adults… the dynamics have changed!!
I think we must change our mindset, yes, we must, for our own sanity and to be able to continue to live our best life!!!
I understand you can’t take the words “love and care” out of the scenario… we love and care physically, mentally and emotionally we do all of those yet, it stresses us out! To the point where we’re just frazzled.
All I’m saying is let’s be real, let’s be totally and truthfully transparent… it’s is overwhelming!!!!
My advice would be to put them in the hands of professionals, ones that are paid to offer the best care they can to our aging parents. And always go to check on them to ease your concerns and also for them to see your face and vice versa.
I am a former professional care giver and have seen many families put their aging parents in facilities or even allow them to stay in their homes with basically 24/7 care.
Those adult children get to travel, they get to enjoy their own retirement and live out the rest of their lives in peace and more than anything in life… we seek “ peace”!
I can imagine not everyone has the financial stability to make some of this happen, but, I would say it is worth it, it’s definitely worth making a plan to place staff in place at their residence if you wish for them to stay in their home or put them in a facility.
I always say no one will love them like we do( the children) but, there are many who have deep compassion for our elders and care about them, and in time they really do begin to love them as if they are their own family.
One love
What a wonderful answer.
You can also talk to the Hospice Nurse or Social Worker and ask for a Volunteer that can come and sit with your dad while you can get a break. Typically it is no more than 4 hours. A Volunteer can not do "Hands on care". And it can be arranged once a week or when you need it. (It would not be daily)
You can also look into seeing if dad would qualify for any services through your local Senior Service Group or Area Agency on Aging or if dad is a Veteran the VA may provide some caregiver hours as well.
You need a break from this. I do hope that you can talk to the Hospice Social Worker and contact YOUR doctor and let your doctor know what you are going through., A visit or a few visits to a Therapist might be a good idea just so you have another safe place to vent. (This is one safe place!)
ok so first of all you are NOT a bad person so get that live of thinking out of your head.
the pressures if caring fur someone at sone point catch up to you and you have reached your point after a lot of sacrifices
I think you need to speak to the hospice- they’re normally very caring and helpful and tell them you can’t cope anymore
and can he be moved into the hospice as you are now getting ill
after that response I’d pose to rest of the family you can no longer cope and options are father goes into hospice full time or one of them bus take over.
i think we know the answer there!
you don’t owe anyone apologies or explanations to be fair but fur courtesy sake you could just say you can’t cope anymore
don’t allow anyone including g yourself! To out you in a guilt trip
you Have done more than anyone
( you deserve a life as well)
best wishes
ps the hospice would gave carers there all the time to look after your father and they work in shifts to get rest which you don’t
You can visit as much as you want knowing father is being cared for. Best wishes
This person needs to find care for her dad in addition to learning how to take care of herself. As others mentioned, if possible, he would be better served in assisted living or nursing home, with Hospice.
This woman will burn out / have a breakdown. No one can run on empty.
She needs to learn to put her self on equal footing with caring for her dad - caring for herself.
Rick Hanson, Ph.D., Brain-neuro-plasticity brain and Buddhist scholar.
Wed night 5:45pm Zoom meditations and dharma talks. Excellent.
Gena / Touch Matters