I'll do my best to explain my situation in as much detail as possible. I really have no one to bounce this off of, so I need some advice.
Ages/Relationships: I am 29 years old, married, with a 1 1/2 year old living about 2 hours away from my 82 year old dad. I have 4 half siblings on my mom's side — she passed away suddenly in 2013. I am my dad's only child. My parents were divorced and it was messy, so my dad's relationship with my siblings is also kind of complicated (I don't remember a ton of this, as I was a child).
Health Context: My dad was a smoker, so he has COPD and had a stint put in when I was a teenager, but overall was able to be independent until now. He has had mobility issues with his knee and opted to get a knee replacement at the end of January. His cardiologist and pulmonologist both cleared him for the surgery, and we made a plan that he would go from surgery to a rehab for a couple of weeks then transition home. I coordinated with my friends to stock his freezer with homemade meals he could heat up easily, cleaned his condo and was with him the day of the surgery. Once he was in recovery, things seemed stable, so I headed back 2 hours to my place.
Recovery from Knee Surgery: Since then, it has been rocky. Dad was prescribed oxygen for the first time, and he has refused to wear it and has occasionally refused albuterol (don't know if that's the correct spelling) treatments because "he never was an oxygen patient before this." When he is not wearing the oxygen, he gets more cognitively confused. So now he is having PT, OT, and speech therapy.
I have been the contact for any updates from the rehab. They have been pretty thorough, updating me almost every day, which I am grateful for. We went up the following weekend after the surgery with my husband and son to see him on his birthday (another 4 hours on the road). Last week, we all had pretty severe respiratory infections, so we were at home. Yesterday, he was transported to the hospital from the rehab for high potassium and kidney issues that they are treating.
Questions: What I need advice on is, how on Earth am I supposed to manage this all while living my own life? I have tried to be strategic with what days I take off of work, but also am caring for a toddler and can't exactly pick up and leave him for a week, or bring him with me to a new area not set up for him. My dad has a sister that lives a few states away, some friends in his condo complex, but the responsibility pretty much solely falls on me.
My dad and I's relationship has had its ups and downs. In the last few years, the main issue is that we would be on the phone and he would say things like, "I have no one here to help me," "I just have to figure it out on my own I guess," etc. The hope from him, I think, is that I jump in to his rescue, which sometimes I can do (coming up to take him to doctor's appointments) and a lot of times I can't. Or guilting us about the amount of time we stay for the holidays or visits, then just having the TV on the whole time we're there.
All of this to say, I already have a very guilty conscience. We have attempted to have conversations with him about moving into assisted living or moving closer to us before and he has refused. He likes his friends and his life where he is. And we cannot move up there.
What is sustainable for me to do? Do I need to go up every time he's in the hospital? Every week? If I had any siblings I feel like it would be reasonable for me to step down from my current level of involvement.
My husband and I are anticipating having more kids. I will not slow down this timeline for the uncertainties of my dad's health, but also know this will only get more complicated to juggle.
In your case I would not move Dad closer particularly since he does not want to move near you. Understand that there is tremendous pressure to move family members closer to us in our society but I think the 2 hour drive each way gives you healthy boundaries.
1. Make sure to mention every time to any medical professional that you ever talk to on the phone that you are only 29, work fulltime, and have young children. Over emphasize to the professionals that you have other committments.
2. No, you do not have to visit every time he is in the hospital.
3. No, you do not have to visit every week.
4. This is a marathon, not a sprint. Take care of yourself.
5. You do not have to stay all day. I'd make it about an hour. Make a point of saying hello to the professionals when you visit.
I visited Mom (who was in another state) about every 6 weeks. Sometimes I went 4 weeks. Sometimes I went every 8 weeks. Once I went after 12 weeks which was truly wonderful. This was over 6 years. I found it hard even though I did not have a job or young children.
I would set up a routine of maybe every 4-8 weeks of visitation.
I know another lady who visited her Dad every 8 weeks. The brother visited every 8 weeks so Dad had a family member visit every 4 weeks. They also all lived out of state.
My sister did not visit Mom once in 6 years but she still found time to take ski vacations to Chile several times. When Mom was closer to the end My sister wanted me to stay with Mom indefinitely and round the clock. At this point I'd been visiting Mom once every 4-8 weeks for 6 years and overseeing her care. I ignored my sister and kept to my routine and have zero regrets. I was with Mom for the long haul.
If being there for your dad means you're not there for your child, then you aren't fulfilling your main responsibility. If you're wearing yourself out trying to be there for everyone, then you're not looking after yourself.
So, no, you don't drop everything and go off to your dad every time he has a problem or needs to go into hospital. He is not your first responsibility, not even your second or third.
It's his decision to not live somewhere that is more appropriate for his time of life. It's his decision to not use the oxygen. His needs do not outweigh yours and nothing outweighs your child's needs.
Stop feeling guilt that you haven't earned. Be a responsible mum, let your dad take some responsibility for himself.
Someone told me once "it's better to feel guilty than full of rage" regarding the constant guilt trips she has placed on me my entire life. I was starting to hate her so much it was damaging my health, so I had to set the tough boundary and deal with the guilt.
Another thing it has taught me is that I will NEVER do this to my children. You have way too much going on in your life to be able to be the caretaker as well.
He sounds like he will be very difficult and uncooperative as his needs increase, which they will. Love him, call him, send cards, let him video chat with his grand baby, and visit regularly (2x month?). Do what you can when you come - go out to eat, run a few errands, etc. You don't live there and you can't live as if you do.
He is guilting you, and it is working. There is no reason for you to have a guilty conscience.
You feel, and state, that the responsibility falls solely on you.
You are not responsible for fixing this for your dad. No matter how much he tries to involve you. His guilt tactics are manipulative. And he will continue to lean on you, because so far it has worked out for him.
Why should he move closer to you, or to assisted living? When he has you to come running every time he calls?
You need to let him know that as much as you care for him, your continued level of involvement is not sustainable for you, and let him know, unequivocally, that you will be stepping back.
He can hire aides to come help him. He can get meals and medications delivered. There are ride services to doctor appointments. If he's so connected to his friends, maybe they can help him out.
If no help is available to him, then it is time for him to move to an assisted living or skilled nursing facility.
He will most likely stubbornly refuse, and insist he can live independently in his own home. That's fine. Let him. The next time he is being released from the hospital, tell the doctor that there is no one to help him at home, and
Do Not Pick Him Up to Take Him Home! The doctor will release him to a suitable care facility if he is unable to find his own transportation back to his home.
I understand you would like him to find an assisted living arrangement closer to your home. But, if he is close, you will be drawn in to help him with little things all the time! And, as you know, "this will only get more complicated to juggle."
Do not feel guilty about setting boundaries and taking care of your self, your husband, and your child first.
* You deal with what is driving you (guilt).
- get into therapy or find supportive friends.
- You decide what boundaries you will set with your involvement / time.
* You have a full life / family and that is your priority. You are too young to take all this on - from my perspective. And your family needs you. You CANNOT get back the time you have now with your kids. Do not lose that / this time. It is a gift.
* You find a caregiver / care manager close by to help you manage your dad's needs. You use HIS $, not yours. And/or
* You enlist an independent social worker to help you figure this out. Perhaps he is entitled to govt benefits (for as long as we, nationally, may have them as so many are being cut now). If he has a home, consider selling it.
IMPORTANT TO REALIZE:
* Dad will not be happy and likely not cooperative in meeting his needs based on what you can do and the health / aging transitions he is going through and will continue to go through. His resistance is to be expected.
- At this point, whoever has legal authority to make decisions on his behalf needs to.
-- If that is your dad, he will do what he wants and you need to make peace with that. He likely will not make decisions in his best interest.
-- Get him medically assessed to be competent to manage his life/welfare. If he is not competent, then you take over (or another family member?) legal authority to make decisions.
These times of transition are very difficult for everyone and strain what the already strained family dynamics.
- Be clear on what you will and will not do. If you do not take a clear stand, you will be swallowed up in all this - and it will not serve you or your dad (and certainly your immediately family will suffer).
I am glad to read that you 'will not slow down this timeline for the uncertainities of my dad's health..." --- this is a first step. Glad you know this and able to take it.
As many of us experience, you can do so much and then you need to let go.
Guilt is a nasty difficult emotion to deal with - turn that guilt into: "What is the best course of action NOW and moving into the future for my dad" and do it. That he will resist and not like it is secondary.
As I said, if he is of sound mind and can make his own health care / welfare decisions, you need to make peace with that and 'let it be.' Meditate, know your boundaries, know you did / are doing your absolute best.
Here's a hug for you, Gena / Touch Matters
I suppose what I am saying is that by interviewing and touring we narrowed down what he could choose so he had a say nor was he not overwhelmed by the task of getting his own needed help. The conversation was, “It would be nice if you had help cleaning, cooking and shopping. How about if we have someone come this week and you can tell me what you think?”.
Keep him in an area where his friends are.
Keep him in an area where his doctors are
Get him transportation to and from medical visits.
Keep him in an area he is familiar with
Get him into a facility where he will be able to get the help he needs when he needs it.
You can manage some things by phone and computer. Any doctor visits you can have access to his medical portal if you and he so wish.
Do you have POA?
Do you know all his medical wishes?
Does he have all his "legal ducks in a row"?
It might be a good idea to spend a bit of time with an Elder Care Attorney to make sure that if and when you need to make decisions for him you legally can.
You also need to make sure that he is protected from others that may want to take advantage of him (do not know if half siblings are the type that would try to take financial control if there is any assets to control)
My mom hated me for selling her house and placing her in assisted living. She did get over it. Trust me, it is a very difficult decision for you to accept.
You need to make it very clear what you are prepared to do and what you won’t do. If he doesn’t accept AL or moving closer to you, it’s not your fault. You can't force it. You are not guilty of anything. It’s a pity (probably), but you have to let him have his way. As he says, “I just have to figure it out on my own I guess”. That's right, because he didn't like the way you tried to figure it out. It's not up to you to try to find alternatives he might accept. Agree with him, and live your life with your own priorities, just like he does.
He will probably repeat repeat repeat guilt attempts for months or years, so you need to put some effort into ignoring his line. If you can, duck the next crisis. With luck, when he finds that his picture isn't going to happen, he may change his ideas. Good luck!
He can't expect you to come running to fix his bad choices. So take that off the table. Set boundaries. Figure out what you CAN do (easily and without torpedoing your life) and do only that. I did and it was very freeing. You don't have to be there for every trip to the hospital. My father went so often it was comical. I stopped being available to run him back and forth to the hospital. I'd come if they decided to admit him which wasn't often. When he moved to AL and still continued the never-ending ER visits, I made him pay for the medical transport to bring him back to the AL. I could not have my life disrupted on a weekly basis for that. Again, if he was to be admitted for a couple days, I would find a way to get up there and check on him. You have a small child, you can't revolve your life around your father's demands.
You may want to do a one few-day visit with him to assess the situation. Come up with a list of things HE needs to get set up. And then go back home. Since he lives so far away, have a once a month planned visit for HALF a day. When my father lived on his own, I took him shopping every other week and called once or twice a week. Once he went to AL I visited once every three weeks. He was only 30 minutes away.
My BIL is 87 and lives 2 hours away. I am dreading when he will start to need some real assistance. I keep warning my husband about this but he puts his head in the sand.
Dad has COPD, and needs to be on 24/7 oxygen. Both my sister and Mother had it. He decided to get his knee done at 82, risking surgery and the post op effects. I'm sure his Doctor clearly explained it beforehand. In reality, he's 82 years old and was a chronic smoker. It took my sister a few weeks to accept her diagnosis, and she quickly got her affairs in order.
Why are you feeling guilty? You didn't cause him to smoke, or get old and sick. He knows he is responsible for himself, and is trying to get pity from you so you will sacrifice your own life for him. I wouldn't even want to get POA for him, either. You are lucky he's not whining to come live with you.
Next visit, make it a point to get serious with Dad. He needs to get his affairs in order, see a Elder lawyer for his documents and advice, and get all this done pronto. He needs to stop being stubborn and do what his Doctors tell him, no excuses. My sister lived alone with her oxygen concentrator for years. Remind him you work and have a toddler, so cannot come running at his beck and call! He will either need to hire a caregiver, or move into a facility. He will have to PAY for someone to wait on him.
Emphasize he needs to get his affairs in order, and you can't be the solution for him, since you have your own family. He doesn't need you coming that far to take him to Dr. appts! He's already acting stubborn about his oxygen? Make sure the Rehab knows he is non-compliant, has no help at home and you cannot be responsible for his care.
Good luck in this sticky situation.
Since it is quite a distance for travel, you work, and you have a young family... you are entitled to a "visitation plan" that works when you are on a day off from work and doesn't create undue hardship for your family. That will most likely mean monthly in-person visits and more phone calls.
Talk with your husband about what is feasible long-term in terms of managing your dad's care. You might want to move him closer to you into a place his finances can afford.
You are young and starting a family. You now need boundaries. You need to sit down with Dad and explain that your family is #1 in priority. That you cannot be at his beck and call. So he does what the doctors say, that will give him a better life. If he has the money, can sell his house, he needs to go into an Assisted Living where there are staff to help him 24/7. Pick one that has transportation to appts and shopping. If he wants to stay where he is, fine, but realize that you work a job and have a toddler at home. He is 2 hrs away. You can't be expected to drive that distance on a regular basis. Sorry Dad, but your basically on your own.
Your Dad got himself where he is. He chose to smoke even with the warnings which started in 1964 and were put on cigarette pkgs in 1965. Your Dad was 21. You really can do little for him. I think you already have the attitude "I can't do this". Its just getting Dad to realize you can't.
He does have people who can help him other than you, but he's choosing not to use them. So don't let him guilt-trip you. When he says thing like, "I'll have to figure this out on my own," pleasantly wish him luck with that and say, let me know when you do.
You don't have to go to his doctor appointments; he can use uber or a cab or a medical transport service if he can't drive himself. He can hire a caregiver to help him out if he needs if at home. You can speak with him by phone/facetime when he's in the hospital.
Since he is there now, the hospital will have a social worker/discharge planner checking on arrangements for when he leaves. You could reach out to this person proactively and let them know that you are unable to help him due to distance, your job, and your young child's needs. Let them know about his lack of cooperation with follow-up care. Don't agree to accept any responsibility. Then you can lose the guilt because you've notified a professional about his needs and challenges.
Also, do not encourage him to move closer to you! He likes his current situation; uprooting him would dump so much work on you plus he wouldn't have his friends, routine, and social life so he'd become more negative and dependent on you for those.
I have a former employee (age 75 now) who has COPD and is working hard at doing respiratory therapy and making her condo senior/COPD friendly. He son in his 30s lives with her, otherwise I don't think she could manage very well, even though she still is able to safely drive, everything exhausts her. I'm mentioning this because your Dad needs more care than you can possibly give him -- especially since he doesn't seem vested in his own progress. He's already shown you that he wants consierge caregiving services from you and doesn't seem to care how it impacts your life.
I think you plan a multi-day trip to visit your Dad (include week days so you can get legal and medical stuff done if necessary). On this visit you bring PoA paperwork that gives you authority to manage all his medical and financial care. It should be "durable", meaning it doesn't require anything to activate the authority, it is active immediately. All the boxes for managing and making decisions on his behalf should be checked (selling cars, real estate, investment decisions, all of it). You it legally finalized (will require a notary and 1 non-family witnesses) so probably take him to his bank or a certified elder law attorney). If he won't sign this then you will need to inform him that Plan B is that you will leave and call APS to report him as a vulnerable adult. Then he will be on track for a court-appointed 3rd party legal guardia who is not you. At that point you will only be able to visit him but have no legal ability to make decisions for him, including when and where he goes into LTC facility. This seems really hard-nosed but since he's such a passive-aggressive communicator, you need to be 100% blunt with him because it's decision time.
If he does sign the paperwork he then also agrees to relocate to a LTC facility near you, that you choose. If he is assessed as needing LTC, he will then eventually qualify financially as well and Medicaid will cover his LTC. So, money won't be an object.
But with a young child, you, your spouse and your child are the priority. As others have pointed out, your Dad had his entire life to plan for his old age and assumed it was going to be you. No one can be assumed into a caregiving role. It is immoral to do so, and just foolish. So, do not feel guilty if you decline to participate in his care. I'll bet he didn't spend much time orbiting around his parents, right?
I wish you wisdom and peace in your heart as you work out your level of participation, if any.
You are not responsible to manage your father's life.
You have a family. Your obligation and your responsibility is to your current family.
You can call your father and speak with him, make suggestions he have discussions with his care teams and with the social workers when he is hospitalized.
When your father cannot manage his own life then he must go into care.
If he has assets for this then he is going to be self pay as long as he can and then will apply for Medicaid. If he has no assets then he will enter a nursing home as a Medicaid patient.
Your siblings are in no way involved in this. They apparently did not get along with the man. So discussions with them aren't necessary.
If at some point your father neglects seeing to his own care needs you will call APS in his area and report him as a "senior at risk". You will let them know you do not wish to be involved in his care as POA or guardian, and if he is having dementia issues he will need to be a ward of the state.
What is sustainable? Phone calls to give him the numbers for 911, for APS, and to suggest he contact his medical team. Visits rarely. That is what is sustainable. You have a life. You need to have the COURAGE to be HONEST and to tell your father you are not jumping through any hoops of fire to care nor management. That you have not the time nor the WISH TO DO SO.
That's the hard truth.
Veer away from that truth at your own risk. You are an adult who has hard choices to make. You can feel free to grieve all this, but nothing will change the past or the present and the FUTURE for your OWN LIFE is in YOUR OWN HANDS. THAT you ARE responsible for.
Your father needs to fully understand, for his own good, that plan A is off the menu and plan B is his own to implement.
Your dad has made the choice to stay where he is, okay, that is his choice.
However, he is now trying to manipulate you through a tactic known as FOG, fear, obligation and guilt.
You are NOT his old age plan. This is a common thing with selfish elders. I had you, I raised you now it's your turn to take care of me, all while I do nothing to change my circumstances and you forsake your husband, children and life. No! It is beyond unreasonable for anyone of any age to expect this of their adult children.
He has resources, give him the number to his local area on aging, aka county counsel on aging, easy to find for his area with a google search.
You have to, HAVE to set and keep boundaries. You have a toddler, you can not be at his beck and call, period.
You decide, with no guilt, no matter how hard he tries to lay it on you, what you are reasonably able to do. He isn't going to like it, too bad, so sad dad. He had 52 years before your birth to figure out what his old age would look like, he has had another 29 since to put it in place, if there is anyone guilty of anything it is him.
Only you know what you can reasonably do for him. Talk to your husband and make a plan together, then ask him to back you up, reinforce the decision when you are feeling weak and to step in and tell your dad the above if required.
You got this!
This is so good, it's worth repeating.