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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?

(((HUGS)))

See if there is any free caregiving seminars in your area. 2025 ushered in a new Medicare benefit for caregiving (you) for the beneficiary (your Dad). I'm not sure what or how it is. In my state, it is slowly rolling out.

The you, now, is different from the you before and the you that will be. See if you can find a higher purpose for the day, for the hour, something that takes your mind off how "not you", you are in. Think of the things that you are learning, that you would have never experienced if you were not taking care of your Dad.

I would probably seek professional help as it does sound like you are in the throes of depression...and that spiral will take you down even further. When was the last time you saw a doctor?

These are tough times, however, feel good in the knowledge that you are there for your Dad. No one can take this experience or feelings from you.

(((HUGS)))

P.S. The Hospice that I used for my Mom, also provided optionally therapy for me. Does your hospice provide any mental assistance, for you?
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Reply to ChoppedLiver
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You don’t have to do this. Please don’t give up school and work. This could take years but WILL consume you 24/7. Hospice is a gift. Take advantage of every benefit and get back to living. We understand the loss, and grief. It doesn’t have to drown you; but will if you let it. Go back to school and work. As a care manager you can regain the loving daughter role.
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Reply to JeanLouise
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I felt exactly the way you feel when I took care of both of my parents after mom's stroke. I won't tell you how long it went on, because every case is different, but I will tell you, even two years after the passing of my mom and 5 years after the passing of my dad, I havent really got "my life" back. And that's ok. Because even though I didn't want to derail my own life like that, I realize now that I wasn't derailed like I thought. My life was supposed to go that way. I really couldn't have done anything other than what I did. I even wrote a book about it, which just came out. I know this doesn't help you in the moment particularly, (you're probably saying "I need a way to feel better NOW!) but I just wanted to say that this IS your life, not the one you imagined, granted, but the one you've got, and it can be just as rewarding. I know how bleak it looks, the whole "groundhog day" aspect of it, the way your friends are falling away, the loss of social life or even regular showers. But I also know how this is growing your soul and your spirit, and making you an even more exceptional person (when you were obviously one to begin with: only the truly brave and strong take on this responsibility in the first place). You're amazing. This is hard work. Some of the hardest work there is. You WILL be glad when it's over, and that WILL make you feel a kind of way, but know right now that I see you and honor what you are doing. And if my experience is any indication, as profound as your desperation is now, your peace, in the end, because you did what you did, will be equally profound. I fought the reality of my situation for a long time, but no one wins an argument with reality. The one thing I wish I had done was to ask more questions about my parents lives. No one can answer these questions for me now. We had so much time together and I didn't take full advantage of it. But that's a much easier regret to live with than than regretting not helping them more. You will be ok. You won't be who you thought you would be, though. You'll be someone wiser and more compassionate and more evolved than most. I hope you understand how incredible that is. Caregivers are a special breed. Very special. Sending you a big hug.
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Reply to sueswag
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Bless your heart! I do understand. I took care of my dad for over 20 years after my mom passed away. It became very difficult a few years ago when his health started to decline. I tried the best I could by getting extra help and only working part time so I could be available for him. During this time I also felt like I lost myself and what was important to me. He needed 24 hour care and I could not do it. I was struggling financially so I had to go back to work full time. He is now in a facility and getting the care he needs. He was upset with me along with some of his friends and family but I had to do what was best. I had no help, I'm an only child. You have done your best. You need to either try to get some full time help or look into a facility so you can go back to work and enjoy yourself. It is not good for your mental health that you can not get out of the house often.
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Reply to faithfulbeauty
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My father was diagnosed with colon cancer at age 93. I thought the end of the slog was near back then. That was over two years ago. He just had his second anniversary in the nursing home where he now resides. I am learning this lingering can go on for years. My father also has that empty shell look, doesn't speak much or communicate much anymore. I never thought he was going to out live my mother with this diagnosis but he did.

If you are no longer able to handle home care it's time to figure out your next steps. My siblings and I could not do it anymore, it became too much because we were caring for both our parents. It was a crisis situation.

When we could not get him out of bed in the mornings and needed to call the fire department, we knew it was time to place him. You might need to think about doing this.

My father is doing okay where he is. He is getting the care he needs and is not upset that he is there. We visit a lot, he is not abandoned. I was not physically capable of doing the level of care he needed any longer. I'm a senior also.

Don't lose yourself, you matter too.
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Reply to Hothouseflower
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Bless you for taking care of your father!
getting breaks and help is great advice, so you can find yourself again. No one else will. Are for your father like a living family member. To others it is just a job. I suggest you keep looking for options of help and breaks. If you have lost respect, live, or are treating him badly. then I suggest other arrangements for him.
I will pray for you and him! Best of luck, and this too shall pass.
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Reply to Tiger8
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You need more help - family, friends, neighbors, members of faith community and PAID help. Get enough help so you can go back to school and work - even part time - so you can revive that part of yourself. Get enough help so you can get out once a week for "me time" - your appointments, do things you need to do, revive a social life with friends. The reality is that nobody really knows how long anybody will live. Your dad can be on hospice or palliative care for a long time and you shouldn't put your life on hold.
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Reply to Taarna
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yes i hear you! i have 3 brothers and a sister and i was the one who was takin care of my dad - my sister lives in another state, and at the time my 3 brothers worked and i was retired, it wouldn't have matter if i was working i still would have had to shoulder the burder! it's expected of women, is there any way you can get help with insurance to get aides in to at least sit for a half day. do you have an older woman in area who would like to make money and could help you out. try to get help this way - can your dad's finances pay - how about organizations who you can go to for seniors to give advice on how you can carve out more time for you. parents dont want to be a burden and feel worse bc they are - and sibs are selfish to not help - even though i complained when my dad passed i felt good that i helped. i felt no guilt. God Bless You and good luck
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Reply to AngieGuido74
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I have a file on my computer titled, "Wondering Who I Am." I started journaling in 2013 after years of dealing with a disabled husband. I didn't feel like me any more, as you said, and beyond that, I didn't even know who "me" was any more. You don't say how old you are, but if you've given up school, then I am going to guess you may be in your 20s. School will always be there, but for now, you need to take care of yourself. If your siblings are unable to help, then talk to hospice about a respite stay for your dad, and then have an honest talk with your siblings. A hospice social worker could facilitate the conversation. Tell your siblings that all of you need to figure out the next steps for dad in terms of hiring in-home care or placement because you can't continue doing this. I wish you the best.
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Reply to graygrammie
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Calcifer94: Seek respite even in small amounts.
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Reply to Llamalover47
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Beethoven13 Feb 15, 2025
Hospice provides 5 days in a local nursing home or hospice facility every 30 days is what I was told in 2024, others are saying every 90 days. There is no hospice facility in our town, only the 5 sad nursing home. One is good, one okay, the rest awful. I’ve been in all. We never used that benefit because I used my dad’s money to pay for 24/7 care at home with both agencies and private caregivers. It wasn’t worth the interruption of care we had in place or stress to dad. Despite all the caregivers and money and 15 months on hospice, it came at a Huge cost to my well being, health, mental health. I have held onto my job. Rented an apartment about 10 minutes away and tended to every detail of their lives for 2 years. Dad died 6 months ago. Now I have my 90 year old mother. She is living at home with support. That I pay for with her funds. Family is not helping. A cousin I never expected has done more for mom with visits and rides than I ever expected. The one I thought would help, hasn’t been much. She dealt with her elderly parents. Has lots of resentment that I never knew until now. Now it’s my turn. Doesn’t matter that my mom helped her mom. Her mom got stuck with our grandparents. And she was collateral damage. I get it now. You’re on your own in this journey. It’s made me plan ahead. Just like my dear dad did. I have lost my freedom and that’s what I feel the most. I chose some of this so I can’t blame. I came home. To handle things, because he needed help. He had been there for me since I was a young child. My rock. I wasn’t going to leave him but I had no idea what I was signing up for. Social worker and care manager at Rehab were useless. Just ticking the boxes and dumping because we had the funds and I was educated. But I expected more support. From those who had been there already. What I found, they had been there already, seen the horror and dead end that caregiving is and wanted no part. Other than superficial “take care” ask for help, but not from us, statements. We’re now free and don’t want to go back.
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So often we want what’s best! And, wanting what’s best sometimes is not what’s best for us.

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
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Reply to Endure
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JanPeck123 Feb 15, 2025
Endure,
What a wonderful answer.
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Yep! That's caregiving. I used to be very social, enjoying friends, meeting for lunch and dinner, painting with an art group, writing--very outgoing. Now I'm at home most of the time juggling and going to calendar of doctors and therapy for my husband. Find a caregiving group to vent and share - a lifeline to cope and apply attitude adjustment.
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Reply to attitudeboss37
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JeanLouise Feb 16, 2025
It’s all consuming with for a spouse. FB was a page Well Spouse. That’s been a help for me.
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You need to Join a support group so you dont feel so Isolated . I Take courses at Upaya Zen center In Santa Fe, NM . Classes are by donation , a fee or free . There is a Good support group coming up that will meet 4 times for 2 hours starting In March for caregivers at Upaya Zen center . Also Frank Ostaseski will have a support group that Meets Once a Month for 5 Months for a couple Hours - that is $200 . Great teacher and worked with Elizabeth Kubler Ross In the dying Project ( Hospice ) I find Much wisdom with these People . They have other courses for caregivers as well . I think when we are alone with a dying Person it is stressful . The exhaustion and stress can be Overwhelming . I Personally would go to a Community acupuncture clinic for stress relief ( Prices were sliding scale ) Try and exercise - ride your bike , Find an Online yoga class . I Know Upaya does Morning Meditations on Youtube . Find a Hobby Like gardening . No One expects to be taking care of a dying person Unless you are a Doctor or Nurse . Give yourself some credit where credit is due and enjoy your Father while you Can .
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TouchMatters Feb 15, 2025
I appreciate your advice / support. Well said and thank you.
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
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The only way I got mentally better..{felt the same way}…was two years of counseling twice a month… well worth the money..I still go and it helps so much. All the things you feel you can say out loud and not be judged. you can even do it online.. we are just starting year 7 of Lewy Body…I also sometimes feel like one of us has to die for this to end! Good Luck!
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Reply to Sadinroanokeva
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FOTONUT Feb 15, 2025
Oh how I am with yu. My 83 yr old alcoholic diabetic 5 yr old husband is driving me to drink at times. To lessen my drinking I’ve just pulled way back away n letting him live in his own imaginative world. His reality n mine are way different. Married 35 yrs n I see no way out now. Not even divorce. I’m hoping I can out live him n know peace again
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Hi
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
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CINDERCYN Feb 15, 2025
Wonderful answer! Having just recently moved my husband (probable bvFTD) into memory care (Silverado) after YEARS of caring for him, until I could not....I am beginning to recover a sense of who I used to be. We are all doing/have done the best we can...and if we are angry then the well has run dry....time to find another way. Sacrificing yourself is NOT required.
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You can take advantage of the Respite Care that is provided by Hospice. It is covered through Medicare, Medicaid and most other insurance.
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!)
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Reply to Grandma1954
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The hospice social worker should be informing you of what's available beyond Medicare's five-day allowance. Respite for All is a faith-based volunteer organization with a presence in several states. Maybe yours is one - respiteforall.org/locations
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Reply to ravensdottir
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Calcifer,
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?
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Reply to AlvaDeer
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Since your dad is under hospice care, that means he also qualifies for their 5 day respite care in either their hospice home or a facility that your hospice agency uses.
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.
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Reply to funkygrandma59
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Since hospice is covered by Medicare, you should give him a choice: either he hires aids to replace you or he moves to a hospice facility.

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.
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Reply to Geaton777
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How old are you? Did you move into his house or did he move into yours?

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.
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