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
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.
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.
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
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:-(
Let your dad know that the caregiver is there so you can work and not worry about him.
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:-(
Are you enrolled in Hospice care?