Hi, I find myself in a situation where my elderly father is at the point where he can no longer care for himself. I lost my mom 12 years ago to cancer, and my dad was never a social person so he does not have many friends and we only have distant family.
It’s to the point where we really don’t even have anyone I could call in an emergency to run over and check on him, other than maybe the caregiving company I’ve hired. One person literally cannot do it all and I am feeling like my own health is declining at this point given this situation. I live on the opposite coast with a life of my own, but I love my dad very much and this is absolutely destroying me.
He’s had issues with prostate stuff for many many years. He’s also had horrible sleep apnea, which has caused him to have extremely poor sleep quality for years and years, and he refused to go to the sleep specialist even though his doctor fully recommended it, and now all these chickens are coming home to roost. Last summer, I received a phone call from his doctor saying he needed support and was no longer able to completely live alone, and suggested that I hire some in-home healthcare to start.
I’ve been paying out-of-pocket for the last nine months to have weekly caregiving (which really isn’t sustainable for me as I already work three jobs just to support myself), but I have picked up extra hours and have managed to make it work so that I’m basically breaking even every month and not putting anything aside. I feel a sense of major obligation and guilt for being so far from him and not able to move back to care for him.
We are coming to a point now where he has decided he does not want to get any of the testing done needed to figure out exactly what is wrong, and his condition continues to deteriorate. To me it seems like he is changing almost overnight at this point. In addition to being worried about symptoms he has related to what they are saying is likely prostate cancer that’s spread, his cognitive decline is starting to increase from somewhat noticeable last October to where we are at now, where he is completely confused almost all the time, having difficulty seeing his phone, and struggling even with the visiting caregiver coming a couple of times a week. He said he doesn’t have much of an appetite, is very tired all the time, and it just sounds like he is giving up in general.
I have not gotten more than an hour of uninterrupted sleep in over a month, even though I am not doing direct caregiving living with him every day. I feel an intense sense of guilt for being so far, and knowing that he is not feeling great, but also is completely unwilling to do all the different things needed to make himself feel better at this point. My anxiety is so high I literally can’t remember the last time my heart wasn’t pounding out of my chest and my stomach twisted up in knots. Mentally, I am in a complete fog. Every time my phone goes off my stomach clenches and my heart pounds.
I also, on a selfish level, feel a bit of anger at being put in this position. Though my dad has done really well to try to manage his money and save as much as he can on a very small salary his whole life, by nowadays standards he will burn through all of that inside of six months in a facility. He did not plan for any of his care wishes once it came to that point, and now I am put between a rock and a hard place where he is absolutely refusing any treatment. He does not want to be placed in an assisted living facility, does not want any help other than for me to basically move back there and be his full-time caregiver, which is just not really possible in my life. I would be blowing up my entire future to return to a place with a little opportunity for me, that I moved away from for a reason, completely derailing everything to help manage his symptoms, basically.
Are there any resources that I could turn to that could help offer guidance? I really wish I had a trusted person who has gone through this before.
You need to immediately stop paying yourself for his care. That is what his money is for, to care for himself.
You need to stop feeling guilty and stressing yourself out. As others here frequently say, you didn't make him old, you didn't make him sick, and you didn't make him stubborn about getting medical care.
Mute your phone at night so you can sleep, and when you're at work so you can concentrate. What benefit does it provide for him for you to destroy your own mental and physical health?
You can contact an elder care manager/consultant in his area, meeting by phone or zoom, to present options for you and help with the logistics. And/or you can call Adult Protective Services in his area.
Don't give up your life to move back. You can turn this over to professionals who have expertise to help him. Even if you moved out there to take care of him, his confusion would probably still mean moving to a facility for safety reasons.
You can get through this.
It is no longer about what he wants, it is about what he needs. When he runs out of money, apply for Medicaid.
The time is now before he gets any worse. Drop the guilt, you did not cause his circumstances.
Sending support your way.
The symptoms you say your Dad is having may mean his body is actively shutting down. At this point, I would NOT even think about moving there, but traveling there temporarily, yes. I would talk to his doctor about hospice assessment. Hospice is paid for by your Dad's Medicare. Or, transitioning him into a LTC facility, which can also be covered by Medicaid plus his SS income. But I think hospice is the logical choice. LTC is the second option if he doesn't qualify for hospice.
Are you his PoA? I'm hoping so. His cognition may be too far gone to assign you as one now. You will need to take some time off to go tend to him. This should all be paid for by him, not you. This is what he saved his money for. You should be reimbursed for anything you spend that relates directly to his care. Make sure to keep detailed notes and every receipt. I did this with my Aunt who lived in FL and I am in MN. If you are his PoA then you will need to bring the papers wherever you go, especially to his bank. Are you joint on his account? If not you will need to figure out how to have legal authority to manage his financial and medical affairs.
If you are not his PoA and he doesn't have one: I would fly to him with printed PoA paperwork from Legalzoom.com or Rocketlawyer.com. Have them ready so that if you can get him some treatment that will improve his cognition, you'll be able to have him sign the docs (plus will need a notary and 2 non-family witnesses). This will make managing his affairs -- especially financial -- much easier.
Or, you can hire a Geriatric Care Manager in his area. Your Dad should pay for this from his own funds. The GCM can handle his medical issues, get him into hospice, help him apply for Medicaid, etc. But you are the only one who can really take control of his finances.
I'm an only who was raised by my single parent Mom and her 2 older sisters, who were never married and never had kids. I was their kid. So I had 3 Mothers and no siblings. I was PoA for the 2 Aunts who have now passed and still am for my 95-yr old Mom. My Aunts lived in FL and I am in MN. Long-distance management can be tricky. It will be a lot of work and stressful at first but then eventually a solution will be in place.
I would act quickly as he seems pretty ill. I know it will be a hardship for you to take time off of work but I think this is the route you need to go. I'd plan on at least a week or 2. Eat the elephant 1 bite at a time. Make a little progress every day and do things in proper order, optimally with the advice of a certified elder law attorney for your Dad's state of residence.
I wish you success in helping your Dad and peace in your heart no matter what transpires. You are doing your best and that's all you can do.
I learned with my dad, I can NOT care more about him then he does. It did the same thing to me that you are experiencing. When I had the realization that I can NOT care more then he does, it freed me from the physical, mental and financial trauma I was experiencing. You are not responsible for him or his consequences because of the choices he has and is making.
Your dad has options. If he doesn't want them that does NOT obligate you to become the solution, period.
His savings should be used to get him help, when that is gone he can apply for Medicaid. You should NOT be using your savings and ruining your future to pay his bills so he dies with money in the bank, period.
It completely stinks to be facing the death of a parent, however, you have to, have to keep your head and NOT let your emotions rule in this situation, it only hurts you to do so.
He has made his choice to not seek diagnosis or treatment, okay dad, so now we find the resources in your community to prop you up while you exit this world on your terms.
I am all for supporting an elders choice for end of life, what I oppose is them trying to hijack and ruin their adult children's lives so they get to do whatever they want. When we move out and pay our own way our parents lose the right to control us in any way, shape or form. They don't think so but, that is the truth. You have nothing to feel guilty about, sad? Yes, Grief? Yes. Guilt? No.
Start reseaching the resources available to him in his community. Department of Health and human service, Area on Aging, aka County Counsel on Aging, American Cancer Society and Hospice would be where I start to find the resources in his community.
Please don't kill yourself to prop up his choices. Help him find the resources, be his loving adult child and advocate when he needs it but, take care of you as you do this.
It is worth being filled with sadness as we are losing our dad but, life does go on and we survive, we can not ruin ourselves on their end of life journey. I pray you find peace, strength, courage and wisdom for this season of life.
While I may not have a ton of useful advice in terms of the financial side of the matter, I wanted to comment as I am currently experiencing a similar situation being the ONLY person in my ailing, elderly mother's life. We have no family and no support system and everything has fallen on me. I am a single mom to a 14 year old, have a full time professional job that often requires travel, and the nursing home that she was just placed in is right down the road. I find myself often in a place of wishing this weren't the case (although logically I understand it is ideal) as my Mom expects multiple visits a day. She also texts me 100 times a day asking me what time I'm going to be there, have I left yet, will I call the facility and ask for a nurse/CNA as her call light has been on for over 5 minutes, and more. Wash, rinse, repeat. She's still in her "right mind" enough to communicate effectively for the most part - but seems to have lost any ability to understand the intense strain this is putting on me emotionally, physically and to be honest - this entire thing means my entire life is centered around this issue and I have no outside life at all. I am naturally an extrovert and this part is very hard for me to handle for whatever reason. It's like I feel like she's intentionally sabotaging every opportunity I get for a break by creating drama and is basically reverting to the attention seeking behavior of a toddler.
While I am firm in some boundaries, others are harder to stick to as I am never sure if she's being serious in terms of lack of proper care/attention by staff or if she's just wanting me to ask how high when she says jump. It's created a really sense of - best way I know how to say it is - resentment.
I recently became her POA and am dealing with a whole list of issues as it relates to Medicaid approval, her home that is paid off and we want to keep, but i am responsible for doing so financially and not in a place to do so, and more.
I know some of these seems minimal compared to other people's issues - but I truly feel so alone and so overwhelmed at times by the sheer crushing responsibility that is mine ALONE, with no one else to even pass it off to temporarily.
All of that to say - I think that you making the decision to place him in a more controlled care environment, not use up all of your savings or leave yourself in a horrible position financially, and moreover the stress/anxiety/constant inability to really focus on anything else in life PLUS ALL THE GUILT . . . those are all things I hope you can find some balance with. Because you are doing all you can and realistically you do have the right to retain some autonomy where your mental health is concerned.
Again - those aren't helpful "answers" but just a virtual hug if you will. I sincerely hope you're able to get this worked out and bounce back to some semblance of normalcy soon. I just wanted you to know that you are not alone and that you're justified in all you're feeling.
Please follow advice from our readers. Your dad needs to go into assisted living, possibly in hospice level. Do not pay any more of his expenses. When his funds run out, he goes on Medicaid.
I’ve read that many caregivers have died ahead of their recipients from continued stress. If you continue much longer, you risk your health and may not be good for anyone, including yourself, anymore.
And it is unfortunate that he doesn't "want" someone other than you to care for him. He is being selfish, and it is unfair to you. He will continue to put pressure on you because so far it has worked out in his favor. You are doing whatever he wants.
You do not need to feel guilty. This is not your problem to fix, and it is not your responsibility.
Do some soul-searching, and decide just how much you want to contribute to his care needs. Then, do that.
If you'd feel better about it, you can help find a care home for him. Or you can help him to hire help at home. But, tell him exactly what you are and are not willing to do for him. He may grumble and complain. He may try and make you feel guilty (what kind of parent does that?) But, he will have to begrudgingly accept his reality.
Call the local area Agency on Aging for support and resources.
I wanted to add that chronic sleep problems can both contribute to and be caused by dementia. It’s related to tau protein tangles that form in the brain. And it can be hard to distinguish what is causing what. If he is not motivated to seek or comply with treatment, then pallitiave care (hospice) is the easiest and most humane approach because it’s about preserving quality of life rather than trying to extend length.
Do not beat yourself up. You didn’t cause any of this. Old age plus his choices (living in an isolated way, refusing care) is what got him where he is. Don’t sacrifice your health, life, goals, or happiness for him. He is going to keep getting worse no matter what you or anyone else does. Don’t move near him. Stop working extra and stop using your money for his care.
Like so many, it seems like he just assumed he would die before things got too bad, and now that he hasn’t died and things are no longer manageable, he has no other ideas other than just stay where he is. Not a problem of your making in any way, shape, or form.
Call his doctor, tell him the part time aides aren’t enough anymore and you can’t keep paying for them anyway. Ask him if your dad is a candidate for hospice and does he (the doctor) have any resources for next steps. You could also call APS and ask them about next steps. You need professionals to deal with this.
good luck!
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