mastiffmama Asked April 2022

I love my father dearly, but I am really struggling. Any advice?

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

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MM you said "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 (fortunately or unfortunately) you are 100 percent right. I also have a parent who should not be at home alone but I can do nothing at this point except wait for a trip to the hospital. The waiting is torture sometimes.

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.

Helpful Answer (11)

A wise person on the forum has said there can be no new solution as long as YOU are the solution. Dad, I can't keep doing this alone anymore, I'm stepping back and you need to decide what happens next because this is KILLING ME.
Are you enrolled in Hospice care?

Helpful Answer (8)

Welcome, MastiffMama!

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)))))))

Helpful Answer (7)

I do have POA of finances but he is still of fairly sound mind and taking care of his own finances. He would definitely know if I paid it out of his accounts. He stays completely on top of that down to the penny.

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:-(

(2)

He has the money to pay for care, but he would rather use you up instead. Who's the a*****e?

Helpful Answer (7)

My lot gone that way - due to brain changes, causing tunnel vision focusing on their own needs. Empathy for other people is impaired.

Caregivers have to be the ones to set the limits.

(2)

Hi Kristine.
Let your dad know that the caregiver is there so you can work and not worry about him.

Helpful Answer (6)

Kristine, Welcome to the world of caregiving. You are not alone in your roller coaster of emotions. Most of us are or have been on the ride with you, you just haven't seen us.
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

Helpful Answer (6)

Kristine, my heart goes out to you to see your father suffering is really an awful thing. A home aide will be a Godsend for both of you. If you are on Dad's bank accounts as joint owner - and have POA - you can hire who you need and use his money to pay. Don't tell him it's not free, just DO IT. You have to look at the bigger picture and see that your Dad needs much more care than you can give. You have to be just as stubborn about it as he is! At Stage 4 cancer, please try applying for hospice care, and he will receive many free services. If you need to hire local private help in the meantime, do it! It will give you the respite you need while giving your Dad the care he needs. We are here for you every step of the way!

Helpful Answer (6)

This isn't working. It just isn't. And the worst part is that there are other ways available. If he won't pay for more home care and VA will pay for nursing home care, that is what what should be done. You say he watches his bank account, so you can't just hire someone without his knowledge, so it's VA nursing home. And if that is not agreeable to him, then it's back around to paying someone to care for him in his home. You are absolutely correct with this. What's his plan for his money if not to use it now? Right now is the rainy day. Even when he eventually agrees to Hospice, there will still be a need for more care than they offer. Is there any way the doctor could make some sort of order or drill it into his brain that he cannot be alone at all. Because he can't safely be alone. He is trying to be heroic and will himself to be okay until you get home, but his body is failing him on this task. The hero in him might show up better as the guy who allows you to have somewhat of a life back. You will still have plenty to do to support all of his care, but you simply cannot continue like this.

Helpful Answer (6)

Hi, the VA has a caregiver support program with all kinds of resources, including a support line for when you need some advice.

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.

Helpful Answer (5)

Welcome Christine~ feel free to rant whenever you want but do stop beating yourself up and feeling guilty. I think you deserve a pat on the back for stepping up to help Dad. Also realize... you aren't God... you can't fix everything and you can't change anyone..... particularly a stubborn father. You may have to wait until the inevitable next fall that requires him to go to hospital. Once he's there, you need to spring into action and find the ER social (you can do this even before he is officially admitted) and let her/him know that Dad can't be discharged to your care as it would be an unsafe discharge - you work, he won't accept caregivers at home, etc. They will try to bully and shame you but stand your ground (at this point you should become as stubborn as your Dad). Don't fall for their ruse that if you take him home they will help you find a placement in a facility for him in a little while. They won't - once he is off their property, they are no longer responsible for him. If Dad has Medicare or an Advantage program and the hospital recommends rehab for him, placement in a facility will as least give you a bit of a respite while you find longer term solutions. I think the VA can help with placement also but I'm not certain about this.

Good Luck and please keep us updated.

Helpful Answer (5)

This is definitely the way .. unfortunately to say but you are correct. Stay strong because if it’s not safe at home and he is a liability and UNSAFE ..he should not be released

(0)

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I love my father dearly, but I am really struggling. Any advice?

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