Since a few years, my Dad's health got worse. He (age 88) has some dementia (not diagnosed). His short-term memory isn't so good. He has a few physical issues. He has live-in caregivers at home. I live next door. I'm unmarried, no children. I'm his son. Emergencies happen very often. I could leave the aides to take care of everything alone, but my Dad will get better care if I advocate for him at the hospital, speak with the doctors; and I know his medical history best. I saved the situation countless times. That's very positive. The very negative thing, is that my life is going down the drain. I don't feel depressed. It's just factual: there aren't enough hours in the day for me to help my Dad - and - to keep up with my job and life in general. This goes on month after month. There are so many problems, so many emergencies.
The problems/emergencies are real and legitimate.
My Dad is a very kind person.
The aides are fantastic. The medical problems aren’t in any way their fault. Example: sudden UTI. Other issues. My Dad is well. Sometimes bad luck, and some medical problem appears. Fortunately, he recovers very well every time. Very strong mind and body.
When I say his health got worse, I only mean: before, he was extremely healthy. Never needed to see a doctor.
I do speak with the doctors on the phone. I’m not always at ER. But even phone calls, and helping to organize things, and, and…this all takes time.
If I were to speak in numbers, I think my day is literally spent 95% on him, 5% on me. I know it's suicide if I continue like this: suicide meaning, total destruction of my career and life. My Dad is very understanding, and he wants me to go ahead and focus on myself. But the reality is that I help with all the emergencies. I might have to let go, in the sense that: even though I know he'll get better care with my help, just let go. My focus must be 95% me, 5% him. I can feel my life getting destroyed. I see it on my face. I've got to save myself. Anyone else in this situation?
Went the wrong way.
*Edit:
23 Answers
Helpful Newest
First Oldest
First
My situation was a little different as I was my Mom's full-time caregiver for over four years. She had hip surgery which really took a toll on her. I visited the nursing home where she receiving "rehab" multiple times daily to make sure they were following the prepared care plan. If I saw something I didn't like, I spoke up. I wanted her out of there as quickly as possible. When she came home, it was clear she would need help to stay there. I was always close to Mom, and it turned out that circumstances were such that I was the child (there are four) to step into the caregiving roll. The level of care I provided gradually increased over the years, with my daily goal to keep her clean, well-fed, warm, comfortable, and at home.
Mom passed away in January at age 93. I miss her deeply. I miss our structured daily schedule that worked so well. One of the things we both enjoyed was when I would take her to her monthly hair appointment. After, I would take a short video asking how she felt. I have the video taken two weeks before she passed on my cell phone, so I can hear her voice and see her beautiful smile every day.
I'm in my late 50's. In addition to grieving, taking care of funeral arrangements, and estate issue, I had to look for another "job". I could have remained a caregiver, but I was concerned about taking care of somone else's parent. Through a miracle, I have secured employment in the field I worked in many years ago. It will be quite an adjustment from being a caregiver. I'm excited, yet worried.
My advice: Please don't walk away completely. Be your Dad's advocate every day. I'm so glad I was there for my Mom.
93, that is amazing. What a wonderful son you are, all you did. Eventhat, I will definitely not walk away from my Dad. I do need more balance. I can't allow my life to be destroyed, either. Wonderful you have those videos. Beautiful idea. I do the same, by the way. I have videos: my Dad talking, my Dad singing! He's always in SUCH A GOOD MOOD. Even when he's very sick. He's incredible. Sending good thoughts your way, Eventhat.
I have an extraordinary Dad. A Dad who has done (still does) so much in his life, who has inspired countless people.
God I hope I can get my life back in order.
Going the right way
ADVERTISEMENT
In reality:
As many people say, in general terms regarding decisions in caregiving, you can try to return to being only the son or daughter, instead of being a caregiver. Not helping with emergencies, doesn't mean you never speak again. On the contrary, you can have nice conversations, visit, enjoy each other's company. Every caregiver's situation is different (How many emergencies per week? How much time is it taking away from your life? What happens if you withdraw, will someone else help?). The aides can help. My Dad will get better help with my help, but it won't all fall apart. The aides will help. We can be father and son again.
Yesterday, another (small) emergency happened. I couldn't leave it to the aides, because - it was the aides - who made a medical mistake (it turns out for several weeks, they didn't realize they were supposed to give a pill) (but two written messages were sent to them weeks ago, that they must give the pill). My Dad is fine, but he had some strange symptoms recently. Yesterday, we/I discovered why. When I realized they made the mistake, I contacted doctors. It's being solved now. The aides have been superb. This was a big mistake (pill). In order to avoid this in the future, there is a new plan in place: doctors they should contact if they have any doubts about medication. This was already the plan, but now they have an additional doctor to contact, because of the new medical problem (created by not having given the pill).
My Dad of course is very glad I noticed their mistake yesterday. He will recuperate soon. From today, again I'll try to go the right way, towards building my life.
From tomorrow, I start a new chapter. And I write it here, to hold myself accountable to it. I've solved the recent medical problem; set up a new system for future emergencies (small and big); and will now let go.
What happens, happens. (My Dad might have future problems, but I must go onwards! My life!). My Dad fully understands and urges me to do so. I'll be in contact with my Dad for nice conversations.
Going the right way.
We don’t know each other, but your words really help me, and I want to thank you:
I had never looked at it in this way: "Jeopardizing your career and mental health are no way to honor your father." I’ve used other words to describe it, but I really like your words.
You helped a stranger on the internet; you made a difference to my life. I’m hoping next time I return to the forum, I have fulfilled your sentence.
Went the wrong way
If you line up Blamed and Went together it is quite uncanny the resemblance right down to the way of "speaking", the wording, the repeating of advice given before commenting on it, the spacing, the appreciation, the determination, the intelligence, the enmeshment.
They can seem like brothers of another mother viewed side by side.
We didn't hear back from Blamed. I hope he is doing OK with his Dad.
How charming to have two so very similar OPs, both so very pleasant and appreciative --and the one right after the other.
I DO wonder what happened to Blamed?
I worry for him.
Hopefully he will return and let us know how he is doing very soon.
Like Went, he was very intent on taking all of the advice we gave, and as I said, so very appreciative.
Your life with you helping dad as you do now is much worse and not OK, without you helping dad or with you drastically cutting back your help your life is much much better and is OK.
Seems clear to me. Your life counts at least as much as dad's does. It's easy as a caregiver to neglect one's own needs. It's easy but not healthy.
Below you stated you were changing - taking more time for yourself. Excellent!
Let us know how it is going.
ETA -
"Starting to wonder if the reason I'm going the wrong way, is because I'm a man and I don't like to ask for directions"
Many woman do the same so I don't think so. In any case the why is maybe not as important as the what meaning what are you doing about it?
Baby steps are fine - start making small choices in your own favour. Putting dad first is like an addiction or a very ingrained habit. Breaking ingrained habits is not easy. You need to focus on your needs and start doing things for yourself - one step at a time. You said below you panicked when dad had another "emergency". Breathe deep, assure yourself the aides are doing an adequate if not a good job, and choose instead of helping dad to help yourself - do something that is good for you and has nothing to do with dad. What do you want to do with this extra time you have given yourself?
Have you thought of counselling to learn to look after yourself? ((((hugs))))
"running errands, ensuring he has food"
The aides do that. My situation has more to do with emergencies, which are frequent. Some bad luck, and several emergencies happened back to back. Thanks for the good luck, I wish you luck too!
Sorry, I wasn't meaning the ER trips were futile - meant longer term possible future stuff.
I think I see.
But as Dad can't really be his own 'care manager', how will all the organisation get done without you?
But with my help, he’ll get even better care. Without my help, the caregivers will continue; they’re already handling it.
It won’t fall apart without my help. It’s just better with my help.
So where are you? Rowing your own canoe along, pulling Dad's along also. Rowing hard against the current, bailing out the boats, trying to keep both afloat, getting exhausted.
You talked about 'letting go'. Of this mental burden - the constant stress.
You have already let go a lot in trusting live-in aides. But ER trips, Dr appointments, all require you as NOK. These are stressful, time consuming & increasing.
I'm wondering if a Geriatrician may be of value? To oversee Dad's care. Sort out needed vs futile treatments?
Dad needs a Care Manager of sorts to enable him to live at home longer. Someone to arrange services: meals, appointments, transport, bills, aides (contracts/hours/pay).
Would some 'letting go' to a Geriatric Care Manager be 1. possible? 2. Useful? 3. Improve carer stress?
Or is it time to consider Assisted Living.
When needs outstrip the village helpers - a person moves into a village where there is 24/7 staff. Things like meals, hygiene, Dr visits, med management & some activities are taken care of.
Thoughts?
“You talked about 'letting go'. Of this mental burden - the constant stress.”
No, that’s not what I mean. I only mean the fact that it takes time. Letting go means spending less time on this.
It’s mathematical. I’m not spending enough time on my life.
“Sort out needed vs futile treatments?”
He has no futile treatments. Every ER was necessary and saved his life.
“Someone to arrange services: meals, appointments, transport, bills, aides (contracts/hours/pay).”
This is all taken care of already.
“Geriatric Care Manager be 1. possible? 2. Useful?”
Not useful.
The only point is that I know more about my father’s heath than other people. I’ve already shared everything possible with the aides. The fact remains, with my help during emergencies, he’ll do better. But I can’t continue doing it.
It’s about the amount of time this all takes. I’ll focus on my life now. Go the right way.
He is in pretty good shape most of the time, although quite a few emergencies recently. He requires help for day to day needs but has live-in aides. So mostly he is doing quite well - as long as the current high level of support (family & non-family) is maintained.
Wentthewrongway. I don't think it was the wrong way at all. Maybe it was exactly the RIGHT way that felt right (for your values). Maybe you are exactly where you need to be. Here.
To be cont..
“Maybe it was exactly the RIGHT way that felt right (for your values). Maybe you are exactly where you need to be.”
Correct.
But ——— I can’t continue like that. Here, now, is where I’ll make the radical change.
I take care of my mom. She's 70 and has had physical issues for over a decade that started with an ankle injury when I was 17. She has had mobility issues ever since and she was diagnosed with cancer a few years ago. A few months before the treatments wrapped up, she hurt her other ankle and she's been immobile ever since. The treatments ended in 2018 and she's still recovering from the effects of the treatments.
I'm turning 30 this year and graduating college was my peak. Since then, I haven't had much of a life. Caregiving has been the theme for me since college. All my peers from high school and college are ahead of me in life regarding careers, marriages, and children. I have no job or career history, no GF/wife, and no kids. I'm sitting in the dust left behind.
I have to stay at home to help my mom 24/7. I have to lift her on and off of things. She can't use the bathroom by herself and as a result, I can't go on a vacation or be out of the house too long. I have to do 100% of the work. My mom refuses to bring in extra help or do in-home PT for fear of getting Covid and getting robbed blind. Nursing home isn't an option due to financial reasons and Covid. There is a part of me that almost wants to say "screw it, you're getting extra help/PT."
She isn't as active as she could be and in the last couple of years, has been up and out of bed doing things less and less frequently, though she would bump it up a little bit here and there. Aside from a recent month and a half stretch, she mainly gets out of bed just once a week to get a shower. She doesn't exercise all that much and gets emotional when anyone rightfully suggests she exercise. Talking to her is like talking to a brick wall. She's stubborn and proud of it. She thinks dieting alone will help and it isn't. She eats meals, but snacks on junk food and the sweets aren't helping her get better.
I'm hoping my life didn't end before it had a chance to start and the damage from caregiving can be reversed.
I’ve known like nine guys in ur situation. Three of them are dead. At least two were rendered homeless. All had substance abuse save one. After a few years of this, I’m sorry, but most of them cast off real Norman bates like vibes.
Your mother could go on 25 more years like this. This is how it starts, they hook them young.
Please please do not wreck your career, your gf prospects, or your life over this. At 30 you will be getting the intro job opps you would not be at 35 or 40 even. Please save yourself. If mother has to pay for aides while you work, that’s at least a bridge strategy until she has to sell the ho,e to go into a private pay al that accepts Medicaid later. What’s the inheritance, a mil split with whatever sibs? Not worth it.
When someone moves to AL, it’s similar: adult children advocate, check.
Living WITH or even so close to our elders as next door sometimes causes us to get overly enmeshed/triggered by their increasing needs; without the aids I can well see being overwhelmed with continual crisis and worried when there is that one quiet night you sit on pins and needles for no good reason waiting for the ball to drop.
We tend, as humans to form a sort of fight or flight pattern, and our adrenaline levels just kick in so easily by habit.
You do have the support of aids that you really trust and enjoy.
You do have a job which, if you like it, should provide some relief.
But overall this is sounding as though some sort of habitual "anxiety " component has kicked in here.
I agree with Tothill that a few check-ins with a therapist --Licensed Social Worker trained in Life Transitions therapy (they often specialize in this) or a Psychologist versed in the same-- would probably work wonders for understanding the sort of habitual circle you are caught up in.
You are very responsive to any suggestions you have already had, and you remind me very much of another OP we had very recently who engaged with each responder personally, repeating back what he heard and then commenting further to each and every suggestion.
I hope you got some thoughtful hopeful answers. A lot of this is just habitual ways of reacting. I sometimes tease that the best place for family is a few states away. I am mostly kidding, but in some senses it is great that my 60 year old daughter in Washington State doesn't have to hear about or negotiate every little Californian ache or pain in my 80 year old body, if you know what I mean. I purposely keep her in the dark a bit as to what's coming for HER in another two decades, hee hee. And she doesn't tell me how awful her migraines are too much.
You take care, Went. You sound very engaged and insightful, and intelligent enough that I think you got this. You will be able to pick through and find what might work for you, what probably won't. Best to you and your Dad, too.
“Your own father is telling you to stand down and trust the paid care providers.”
Actually he didn’t say that. He knows with my help, he gets better care. What he’s saying is, he wants me to focus on me, despite that.
I love him so much. Again, I have tears thinking about letting go, and going ahead and focusing on me. The tears are because I know I must do this. It’s utterly wrong to destroy my life.
You mentioned your Dad. I’m sorry to hear he had a very hard time. He sounds like he loved his parents dearly. I hope he succeeded in managing his own life, too.
I’ll go the right way. I’ll let go.
With his Mum, he went into full panic mode anytime she had a health issue.
I think a contributing factor was that he was an only child of immigrant parents. He had never experienced the death of a family member before his Dad died. Sure family died, but they were just photographs and letters to him.
I have read your post and your replies.
Please seek out a therapist. You seem to feel that your are responsible for Dad’s wellbeing. You mention 4 or 6 different events I am guessing spread out over time, yet are burnt out.
Your Dad will die. Not today, nor tomorrow, but one day he will be gone. You cannot stop that day from coming.
Your own father is telling you to stand down and trust the paid care providers. He trusts them. You need to trust them and his doctors.
My Dad acted in a similar way with his mother. He felt that he alone knew everything the doctors needed to know. When she died, 40 years ago, he never got over it. He had the same response when his Dad died 20 years earlier.
Examples of life-threatening: UTI, covid, choking…Every ER was life and death.
And I want to repeat: my Dad is always incredibly happy and in a good mood.
“You've earned the right to see to your own life now and let the others care for dad, as they're paid to do.”
Thanks. I agree. I love my Dad. But I think I must let go. I have to save myself. It even brings me tears, literally, as I write this. I always give 100%. I’ve done all I could to save him. But I can’t continue like this.
That's my advice. I hope you take it and allow yourself to live your life, especially since dad is so understanding and wants you to focus on yourself!
1. Dad is well
2. Dad has frequent emergencies that require me to rush to the hospital, organize dad's medical care, explain things to the doctors.
I think it's time to ask Dad's DOCTOR if it's time for dad to have a higher level of care.
Why is he getting frequent UTIs?
What other "emergency" medical conditions need to be attended to?
Jeopardizing your career and mental health are no way to honor your father.
When my mom kept having medical emergencies (sudden high BP, UTIs, electrolyte imbalance) it became clear to us that she could no longer live at home, even with aide assistance.
She needed a better doctor. We moved her into an Independent Living Facility with an onsite geriatrician and geriatric psychiatrist who took mom off most of her meds and monitored her BP closely. She was able to get HERSELF to the doctor and could call him at any time. Her anxiety was dealt with. We got her a neuropsych workup and understood her cognitive loss better, as did she.
The UTIs were the result of poor hand hygiene in the restroom and the need to a probiotic and vaginal cream. The electrolyte imbalance went away, mostly I think because she was eating better and getting more fluids.
Thanks for wording it like that. I agree, and it’s helpful to see it that way!
1.
Dad is well. He just had some bad luck. For example, he caught covid. But recovered very well.
He got one very bad UTI, but recovered very well. He accidentally swallowed a pill the wrong way, but totally recovered. Almost choked. Never happened again.
He’s well. He had some bad luck. All his doctors are amazed. He takes no pills. Right now, all is good. He recovers every time.
2.
I don’t need to go to ER. I speak on the phone sometimes.
Del, you wrote:
“Is there an aide who knows your father through-and-through and would be a good advocate to go in your place?”
We have great aides. But I have the most knowledge. I already delegated all the work that’s possible to delegate.
I’m thinking of letting go, even though I know he’ll get better care with my help —— not because the aides don’t care, but because I have much more knowledge; knowledge you can’t just write down and share (I’ve already done that with the aides). It remains a fact, that I know more and can advocate better.
“Is it fear that everything will fall apart if you step back here and there?”
It won’t all fall apart. It just won’t be as good as if I help. But I can’t continue like this. It’s destroying me.
I do very much feel like I went the wrong way (still savable however). I went the wrong way because I’m saving my Dad, and destroying myself. That can’t be right.
This isn't going to free up all the time you wish, but it'd help free up a little here or there.
This is a toughy to answer b/c you feel you need to be there for the emergencies and as such, have saved situations "countless times" but this is what is causing you to feel so stressed, in part. I get why you do it. But if you don't change how emergencies get handled, your situation won't change.
I don't know if you went the wrong way as much as maybe NOW you continue driving down the interstate during rush hour when it sounds like you have the opportunity to cruise sometimes on the back roads.
You're a good son, and I'm glad your father appreciates all you do...but even he wants you to back off a bit. That's a blessing in disguise, especially if you have trustworthy aides.
Is it fear that everything will fall apart if you step back here and there?
“I don't know if you went the wrong way as much as maybe NOW you continue driving down the interstate during rush hour when it sounds like you have the opportunity to cruise sometimes on the back roads.”
I’d like that.
I finally had to refuse to transport him to the many ER visits, especially the ones that were frivolous. The hospital would call a cab for him to get home. You don't need to be in the hospital, the doctor can call you. The person who has to change is you. Stop jumping at every crisis and let his aids deal with it. Stop jeopardizing your career. Saying NO once in a while is not the end of the world. What if you were bedridden with the flu or covid...who would handle things then? My father always had a crisis. I learned to put him off. No, can't come by today, I can be there on Thursday. 9 out of 10 times the crisis resolved itself by then.
“Stop jeopardizing your career.”
THIS is the big problem.
It sounds like dad needs to be somewhere with better trained staff and medical care on site.
LIke a Nursing home.
Or, you need to go down the path of palliative care or hospice. Does dad WANT to be rushed to the hospital? Or is that doing more harm than good?
I explained better now:
The problems/emergencies are real and legitimate.
My Dad is a very kind person.
The aides are fantastic. The medical problems aren’t in any way their fault. Example: sudden UTI. Other issues. My Dad is well. Sometimes bad luck, and some medical problem appears. Fortunately, he recovers very well every time. Very strong mind and body.
When I say his health got worse, I only mean: before, he was extremely healthy. Never needed to see a doctor.