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

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

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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

Burnout Family Caregiver

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Even in the end, people cling to their money even though it is not going to save them and they can't take it with them. It is overwhelming to accept and deal with the loss at the same time that you are managing the care. I get it and I am so sorry you are going through this Kristine. Your dad is probably scared and trying to control the only thing he can right now and that appears to be his money. I know telling you this doesn't help anything. Can you get him set up with hospice? I would think that everything would be covered. If you don't think he would agree to "hospice", i've heard it called "comfort care". Sometimes that verbiage is less scary and he might agree to that.... Can you have a come to Jesus conversation with him and just tell him "dad I need help". Would that hit his paternal heart strings enough to be compliant? Worth a try. If he still won't budge, let him know he will need to go to a facility. That might get his attention.

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Dealing with a terminal, stubborn patient is not for amateurs. You're not the best help. Place him in a group care facility.

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I have not read any responses yet, but want to point out that you not being able to go to work does not mean the care you provide is free. It is costing you your current income, could jeopardize health benefits, reduces your retirement and impacts your quality of life.

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You are not alone in your sentiments. It is HARD! We are in a very similar situation, so I'm glad to read the comments.

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I like the response someone made to your post that is basically the “rainy day” approach:
Dad, you’ve done a great job saving for a rainy day and being responsible with your money. Now we need to use some of it for you and your needs because that is what it is for. We will only use what we need to keep you safe and well and not a dime more, but I need you to help me help you. I am on your side and will be like a sentinel to watch and help you with what you need. I need your cooperation to make us a team to manage the rainy days that you saved for.

Maybe a little Pollyanna I know. In the end you will have to use whatever resources and powers you have to do what you have to do.

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Kristine, what did the new scans show?

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Hi Kristine, I just had to share, I know exactly how you feel and you are not alone. I am caring for my mother who has an apartment in my home. I have a brother and sister who live within 20 minutes - all I asked them is for help until we get an aid. Some type of schedule so I know I don't need to worry on Monday for dinner, or Friday for lunch and the result - we aren't speaking to each other. Not to mention the countless phone calls with Medicaid, getting long term home health care approval, pooled trust, on and on and on. Like you, there are days where I feel terrible for my mother, she is 90 and so weak and all I want to do is help, but then I am so angry at her because everything is falling on me and she has no idea. It's affecting me the same way, my relationship with my husband, my job - I have no desire to see anyone. Please know you are not alone!

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mastiffmama: Perhaps he can hopefully be convinced that he must spend some of his money for his care if he realizes that he is about to make you ill if he continues this attitude.

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Kristine, you are in the middle of a truly hard struggle. Tell your father that you need extra help in order to care for him. Ask family, friends, members of your faith community... (free help) for assistance with home, yard, meals, transportation, and watching dad. If you do not have enough help to cover your work times, then hire the help and make dad pay for it.

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Kristine.. sending hugs. Yes it’s tough but take a stand but, get the home health care, don’t take no for an answer! It’s one thing when it’s financially not available and another when it’s stubbornness preventing it . Don’t feel guilty, you are switching call signs from daughter to parent🙃. You have to become the responsible adult who loves him enough to override the stubbornness and get the job done! By any means necessary. Be assertive step up in a authoritative tone and say Dad this is what we are going to do! And begin the list! Hopefully his final days will be peaceful and yours as well…💕

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Hi Kristine,
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 .

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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.

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Kristine,

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.

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You are witnessing the struggle of letting go: you have to and he has to. Dad should be in a nursing home under hospice. How do I know this? I went through this process when my mother had Stage 4 lung cancer. Are you familiar with the "Five Stages of Grief?" https://grief.com/the-five-stages-of-grief/. Please contact his doctor and ask him to put your father in the hospital and plan his transfer directly to a nursing facility because YOU are not a nurse. Good patient or bad patient, he's not your patient.

https://www.medicare.gov/Pubs/pdf/10153-Medicare-Skilled-Nursing-Facility-Care.pdf

Have you consulted with an Elder Law Attorney?

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

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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.

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Many belligerent people are not only feeling anger, and frustration. Often they are expressing fear in this unrecognizable way.

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.

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Like so many others have said, "It's time for hospice."

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.

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It sounds like he is ready for hospice care, which can be done in your home or in a hospice facility. Speak to his doctor about this. Many benefits will become available with hospice care. Hospice care is comfort care, and the focus is no longer to fix things, but to make the person comfortable. Please don't blame yourself for what you cannot do. You are doing your best in a very difficult and emotional situation. You have your own resposibilities for your health, life and work and being there to oversee your father's care. At some point you might get comfort from grief counseling. Take a deep breath and get connected with professionals who may be able to help you, such as a local social worker who may be able to facility the VA paperwork for you.

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Give your Dad one of his few last chances to be a Dad. Tell him what this is doing to you. Explain the stress of his illness, giving up your job, his apparent lack of concern about you. When one is terribly ill, one can get tunnel vision and forget everyone else's problem. This is not necessarily a permanent situation, or at least a full time one. He must love you if you care about him so much. We all will be dying some day, it is just his job at the moment. He is not doing it well. Do call in all the resources mentioned here. Let others help you and do not feel guilty. One cannot do the job you are doing alone. It is physically, emotionally, and financially impossible. And, it is not fair to allow him to do such a poor job of handling his end of things without some straight feedback. He really deserves an attempt to treat him like a caring adult.

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if he is falling That Much it maybe time for hospice that is some extra help and Nurses . You May not be ready for that . Make sure a VNA is coming in and checking on Him. he is too weak for Physical therapy . There isn't a whole lot you can do but get some extra help to come in . get POA ( Power of attorney notarized at bank if Possible ) There are Plenty of Places to look for caregiving - care.com / elder services / next door ( neighbor app ) My Dad started falling also and it has kept me stuck for a year at Home ( he had a hospital stay for 4 days in July ) I did in Home PT and OT and a CNA comes in twice a week for bathing . Don't feel guilty he is Lucky to have you taking care of him Most elder people do not have that .

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while he is still competent, if he still is, go to the bank and have your name added to his checking and savings accounts. He will have to agree to this. Tell him you want this so that you can pay his bills or expenses if he becomes incapacitated. That way you can pay the necessary caregivers with his money. Keep good records so that you can show that his money was used to pay for his caregivers and his necessities. In my opinion, I would not bother telling your brothers about this before hand, maybe after. Just keep good records so you can document that any moneys you used was spent on fathers care and necessities. Sending a big hug.

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You are not such an a**hole, you are in a very common scenario of care giving. Grief and sadness at your father's decline and anger and frustration at the daily demands and frustrations. You may feel guilty thinking "I can't be mad at someone who is dying," but, yes, you can. It helps to express your feelings in places like this forum or a care giver support group.
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.

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Hello. I have been on the roller coaster too, (as so many caregivers are). When my once vital mom got Alzheimer's, her behavior could change on a dime. I never knew whom I was dealing with: a nice woman or a not-nice woman. Illness can mess with people's heads. My mom could go from her usual gracious and kind self, to mean (to me) at the drop of a hat. I, too, felt guilty about feeling frustrated, because I knew her illness wasn't her fault, (as with your dad's cancer). For a few years, I also could work a few hours a week; Hubby watched her then, but after a while, I had to quit to be a fulltime caregiver for her. I never thought my mom would get Alzheimer's, and that our lives would be upended by it, but I had to remind myself that neither did she, on either count. (She also was a 4 time cancer survivor.) My mom never insulted anyone, about anything, but when Alzheimer's hit, it was a whole different story. Speaking of which, I even wrote a book about our travails called, "My Mother has Alzheimer's and My Dog Has Tapeworms: A Caregiver's Tale." As I was driving home form work one day, I realized that my once broad life was reduced to the pressing health concerns of my mom and dog. I tried to deal with my new reality with humor and heart. Your dad is lucky to have a daughter who is concerned about him. The Alzheimer's Association might have volunteers who could sit with him for a while, to give you a break. Your local Area on Aging might have the same. You might also check with local houses of worship and/or a local college, to see if they have any volunteers and/or nursing students. I'm not sure if they could provide physical assistance, if he fell, but they might be able to sit and talk to him for a while, benefitting everyone. Best of luck.

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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.

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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

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You sound like a kind sweet person who is trying so hard. its normal to have all those emotions if he does not want to pay someone that is really unfair to you. you should just get help, he should pay.

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Kristine, you write that "it is only me. I have 2 brothers but one lives in CA (we are in OH) and the other is MIA."

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?

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If possible, join a caregiver support group. You can vent all your feelings with people who understand (like here) but on a regular basis. You might contact your local chapter of the Alzheimer’s association.

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It takes about 6 months to be approved but you could apply for your dad to receive a VA pension that you could use to pay for aides and whatever you need. You could also apply for Aide an Assistance which allows you to use his money as your salary for taking care of him. So sorry you are going through this. I am in a similar situation with a sweet/stubborn father but older and retired- and the VA has been a Godsend.
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.

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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!

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P.S. let him know you love him and you want to help this is the only way.

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

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