Hi all! My name is Kristine. I just found your group searching for caregiver support. I am 51 years old taking care of my-74-year old father who has stage 4 cancer. We have been dealing with this for the last 2 years however the last few months have been brutal. He is declining fast and can no longer be left alone at all. I was able to at least go to work for a few times a week but he has had 3 bad falls in the last 5 days so that is no longer an option. He needs someone around 24/7. He can no longer get up without assistance etc. I am trying to get home health care to come and help through his VA benefits. He will only agree to it if it is free (even though he has the money to hire someone). He is the cheapest most stubborn man you will ever meet. Don't get me wrong. I love him dearly but I am really struggling. It is only me. I have 2 brothers but one lives in CA (we are in OH) and the other is MIA. I describe this journey as the worst roller coaster ride you can never get off of. One minute I am sobbing and so sad because I know I am losing my father. The next I am enraged that we are in this situation and angry with him because he is the worst patient. Then I am wracked with guilt for being such an a**hole. I am constantly depressed and anxious. It is affecting my job, health and personal life. I feel defeated with no end in sight except that I will eventually and probably sooner rather than later, lose him. And that is a whole other anguish and grief process.
Thanks for reading my rant. I send my love to all of you just trying to get by day to day.
Kristine
Are you enrolled in Hospice care?
Do you have POA for finances and healthcare?
In the end, we lied to mom and told her everything was being paid for my Medicare.
Do you have Hospice services?
YOU are not the a$$hole here. You are having anticipatory grief at losing your dad. He needs a higher level of care than you ALONE can give him.
Is it possible he's got metastasis to the brain and he's not thinking clearly?
If he is still clear-headed, I might consider telling him he has a choice--move to a facility or hire caregivers. Because YOU aren't going to destroy your health over this.
Please ask him what he's saving the money for.
AND consider talking to a social worker (through hospice or not) to get you into problem solving mode. (((((Hugs)))))))
He has esophaeal cancer with mets to the lungs and liver. We have a scan next week to show if it has progressed further. He will never agree to hospice. He already told the Dr last week that if the scan shows this chemo is not working he definitely wants to go onto step 2. He refuses to give up which of course is a good thing but with this cancer it is just heartbreaking to watch!!
After his fall yesterday, I did tell him he has 2 choices, pay out of pocket for additional home health aide hours or go into a nursing facility (which the VA covers for him). He just ignored me and said he'd be fine. It is maddening. I feel as though I am losing my mind:-(
Let your dad know that the caregiver is there so you can work and not worry about him.
Respite care for you-ASAP! You can't help, if you're too sick to help from being a caregiver. Something that is very real and must not be ignored.
Keep coming back here, lots of folks will have alot to say.
We do have a caseworker through the VA and finally got 16 hours a week of home healh aide approved which would've allowed me to still go into work but that was before he started falling. Now he cannot be home alone at all. He refuses to pay out of pocket. I literally told him last night that if he wants to stay in his house he will have to pay for extra care or go into a nursing facility (the VA covers 100% of that). He just ignores me and says he'll be fine by himself until I get home from work. Even though I went to work for a few hours yesterday and he fell in the bathroom. It is only a matter of time before he breaks something and that will be it and I have told him that. UGH He is the most stubborn obstinate man. I feel like I am losing my mind at times:-(
Have you had your dad evaluated by his MD for hospice care? It may be time and if he is on Medicare (I am not sure about Medicare Advantage), they will pick up the cost (or most of it).
Give yourself a pat on the back, know that you're not an a****** but are allowed a****** moments.
Hugs to you. We got your back.
Tynagh
At that point you absolutely spring into action, so be ready. You refuse 100 percent to bring him home, stating over and over that it would be an unsafe discharge. The hospital and social workers may threaten you, shame you, or make promises for help but stand your ground. Follow your heart and be true to what you know is right for him.
https://www.caregiver.va.gov/
I have called and spoken to them and they’ve been very helpful. They very much understand what you are going through. They can help arrange respite for you as well.
Also, the Elizabeth Dole foundation (https://hiddenheroes.org/find-help/respite/) provides grants for caregiver respite as well. It’s easy to apply for and could be a good option if your dad won’t spend money to help you get a break. You cannot give up your life completely! Be frank with him about the burden you are feeling. If he really is of sound mind he must be able to understand your struggle. Best of luck to you.
i wish you all the best and please understand that you are doing the best you can but are human. We all feel like you do sometimes. You can’t live someone else’s life for them or stop them from sometimes making wrong choices. Tell him you love him and explore your care options.
This is so (too!) common. The D gets stuck with caregiving, ,while the sons don't have to lift a finger. Remember that Dear Daddy had a part in bringing them up this way.
So YOU get to jeopardize YOUR job? Please realize and remember that nothing will change as long as YOU are the solution for everything. Can you stand up to your father and set some real boundaries?
Good Luck and please keep us updated.
Yes, you will get to the stage of not being able to leave him alone. If you cannot arrange for a hired care giver or some adult day care (your dad's money or your own), you will need to take a leave from work to stay with him. You can be as angry as you need to be, just be, just choose safe places to express your frustration.
I totally get the guilt thing. I'm afraid that after she is gone, the few good memories I have of her will be so crowded out by all of drudgery of the last several years.
During a quiet time, rather than telling your father that he is hurting You, consider telling him that what He is going through is hurting you beyond anything you ever thought anyone who loves their father could bear. And that you will always remember every second of security, love, and fun he made you feel. You may be better able to live with that, even if it's boloney, than the last memories of telling-off an otherwise good dad so close to death.
You're experiencing life and from what you're going through right now you will become a great resource later for someone younger, or older, who will need you as someone who has also experienced the same heartbreak and frustration. You'll listen and feel grateful although the tuition to be of such great help was your own pain.
Call hospice.
Warm hugs.
Caregivers have to be the ones to set the limits.
https://www.medicare.gov/Pubs/pdf/10153-Medicare-Skilled-Nursing-Facility-Care.pdf
Have you consulted with an Elder Law Attorney?
I really feel for you! I cannot imagine going through that alone! My father is almost 85 and has Alzheimer’s. And is bedridden due to a recent pressure ulcer on his foot. Which he has to be reminded about at least a dozen times a day…he thinks he can walk. He could before, but hasn’t since March 8th when we discovered the ulcer. If you have Power of Attorney, move forward with getting help. With your father having the VA to reach out to, you have so many options. At this point, you have to think with your head and not your heart. I’m the agent under my father’s POA. I have three brothers and one helps. We all live within miles of each other. My father is still at home, where we have to care for him 24/7. We have a 3rd person that I private pay and then just 1099 her at the end of the year. Your feelings are normal. I feel the same way!
I am so ready to have my life back. Because I am the agent under the POA, I have to take care of my dad’s estate, which is very time consuming and then also caring for him, the home Heath people, doctor appointments and how we’re going to get him there, groceries. It just never stops. Don’t feel guilty about your feelings, especially having to deal with them on your own. Reach out to the VA! Even if it costs something, tell him it’s free. That’s what I do with my dad. He has become obsessed with $$. Which he is financially fine.
There’s help available, girl reach out and grab it.
I experienced the same feeling with my sister . I felt drained and lost . The worst was listening to her moan in pain and the chills. I spent New Years Eve on my hands and knees cleaning up feces. I took care of her for a year. And at the end when she was at hospice her last burst was yelling at me and screaming at the top of her lungs. It was not easy to compose myself. I spent hours crying on a daily basis as I laid next to her to keep her warm.
I’m certain if you spoke with an advocate they would be willing to help you. Just tell him it’s free. Anything. Just get help . If you are his POA …get help … because it is available. You need respite to come in and help you.
I am a retired veteran.. just ask … it doesn’t hurt .