I'm losing control over my own life, trying to manage my parents' increasing needs.
I'm too exhausted to go into extensive detail, but I am an only child, there's been no planning and things seem to have shifted quickly. I am the sole caregiver, but didn't even realize there was a name for taking care of aging parents until recently.
I started posting recently. Since then, I've gotten into a car accident, been late for jobs, lost important things like second set of car keys... in a month I have two traffic tickets- none previously!! I'm afraid of what will happen next.
I can't just abandon my parents and take a "respite". I'm barely paying my rent. I can't take time from working, I'm an independent contractor and now I have car repairs and traffic fines in addition to my ongoing financial problems...
I've contacted my Area on Aging, it ended up being more wasted time that I don't have to spare.
How do I cope? How do I reign it all in? I'm desperate.
My parents [90's] were similar to your Mom and Step-Dad. Kinda on the border of still remaining in their own home, and one step away from senior living.
What has happen to you, and also to me was that we were enabling our parents to keep their lifestyle while we had to change our own. And my parents viewed me as someone still in their 20's and 30's with a ton of energy, not a senior who was wondering who was going to pick me up when I fell.
Oh in fact, one time I did fall and was out of commission for 6 months. So what did my folks do, they cancelled all their doctor appointments and other appointments and waited until I could drive again. Oh great, I was hoping they would get the hint. No way. Thank goodness for on-line groceries.
My fall did give an opening to start saying "no", but then the guilt trip was placed on me. What irked me big time was that my parents could afford to hire caregivers and taxi service. And afford to move to a really nice retirement village. Nope, never, nada.
So many times I would wish not to wake up in the mornings. Gee, wonder what my parents would do? "They would manage" [their stock answer].
You need to have a different arrangement, either someone else to help with part of the caregiving, or someplace else where your parents can be cared for.
This has to be your goal or else you yourself will lose your health or your jobs or both.
Are they living with you? Can your parents afford to pay for a helper to come in a few hours a day, a few days a week?
Can you tell us what your parents' needs are? That way other members here can better help you.
I see they have vision and mobility problems but not dementia. Do they drive at all?
You don’t say what their finances are but they either need to rely on help from people other than you, or move to senior living where there is transportation, activities and meals.
Believe it or not you have a right to a life without constant stress that is causing you personal and financial harm. You have the right to set boundaries and say to them what you can and cannot do. For some persons it is hard but it can be done. And once you feel like you have some control, you can move forward with a plan. Many parents say they won’t move, period. If that is their answer, then you say, "Based on your decision, I cannot do it all for you". That puts it back on them. You tell them transportation can be arranged, as can in home care as needed.
I will point out that it’s better to move when they are younger than older. You might arrange a day out to visit a place or two with them, have lunch and talk to the marketing director or senior living.
There are options....you just need to realize you are not the only option there is. And that NO is a complete sentence.
Figure out what you CAN do and DO just that. Everything else they need to figure out. If they refuse to help themselves in certain areas then just let it go. Natural consequences. It is the same with children, they won't learn if you do everything for them. In this case you are doing everything for your parents so why should they be proactive?
My father would often call and demand I stop by after work for some trivial thing. I learned to not jump. Sorry I cant come after work on Monday, maybe I can be there on Thursday. Funny how the crisis always managed to work itself out by then.
Think f it this way....if you weren't around, what would they do?
I am with you- in the same situation. Only child, both parents ill- refusing for years to think of alternative living to accommodate their health issues. When assisted living was brought up 7 years ago, my father said he would rather die, be shot, etc.
I had aggressive breast cancer a year ago. It takes all I can to manage my own health appointments and endless scans. A father who used to be kind and thoughtful....Now dad could care less about me and I could tell him I have metastatic cancer and will die in 2 months.... he would be concerned over who will clean the bathroom.
I understand about just not wanting to wake up in the morning.
I am taking them today to tour an assisted living they may not be able to get into.
They have worn out their neighbors and friends.
Know I am giving you a cyber hug- and I am so sorry you are facing this. It feels so lonely feeling like you are the only one on the planet dealing with parents who expect an only child to do it all.
Focus on them today, just today. You can pay a life coach but I imagine they would tell you to up and leave, and it sounds to me as if your love and nurturing instincts are what landed you as the care giver in the first place. I personally went through a car accident and other expensive MISHAPS during my time care giving my parents. So, slow down - focus - discuss with both of them what you CAN and CAN NOT DO for things to run smoothly.
Time to look up the laws and also insurances. Yes, it takes time, so try to do it early in day before you start their doctor's appointments, etc. Are you following me?
A white board helps - the Google Calendar is loaded (even now for myself caring for my older boyfriend) and if you just stick to a 3 to 5 day period of time - you can write the necessary details to be done, and update it with a quick wipe of the eraser. Your parents might appreciate seeing this rather than a printed schedule or your phone apps. I put ours right on frig or edge of the bed.
Make an hour a day for JUST YOU. Save all documents, you will find time to go through them later on, and keep writing to community blogs and newsletters anonymously for tips. I am not the sole answer. I hope you have STOPPED long enough to read this! Now, "take care" of your immediate needs (eat well, plan your sleep and most importantly exercise time just today!). God Bless.
I'm in the same boat; I'm an only child, I myself am not in great health, I'm a writer on a very big deadline and when my mother had a catastrophic fall last year (it was inevitable; she's anorexic and hypochondriacal and delusional and a shopping addict, and refuses to take the bone building meds the doc has prescribed for her because she thinks they will impede her [former] career as a singer "star") I had to take 5 months off just to organize her care. I live 2 hours from her. It nearly killed me. On the one hand, she "apologizes" profusely for needing my focus on her. On the other hand, she lets me know in no uncertain terms that she "did" for me, and now it's my job to "do" for her. And it sounds like you're in the same place. All I can say to you is this, and it sounds very harsh: while we all want the best for our aging parents, it is important to remember two things --- first, if their care impacts our health in a potentially deadly way, that will leave them with no one. They don't honestly care too much about that because at the end of the day, they're like infants: they want what they want when they want it. (Mine will go out of her way to create problems, just so that I have to clean things up for her; she demands the attention.) Second --- the outcome; their outcome --- is going to be the same no matter what. You cannot save them. You can try to make the process easier, but unless you have a very rare sort of relationship with your aging parent, it will go unacknowledged because our culture believes that it is our moral duty to care for our aging parents, and I agree with that. Therefore, you have to do everything you can to take care of yourself. If they have the resources to hire a caregiver, step out of the picture and let them do so. If they refuse, that is not your problem. That is their problem. You can only do what you can do. Remember that. Love does not mean dying for them.
Distance coordination of Dad’s (97) power outage almost two weeks ago changed me, when my 86-year-old husband cried out “I hope I get to outlive your father” [so we can know what life is like free of Dad’s daily crises]. After decades, days and hours of outreach phone calls, consultations with physicians, lawyers, government agents, Area Agency on Aging, county services, state services, neighbors, companies, social workers et al, our circumstance is that Dad will have to have a “medical incident” to force a change. He makes $200/month more than the threshold for Medicaid community care, and his VA benefit provides more coverage anyway. I have learned in our state, that we cannot afford to “place him” on our own. We need the magic “incident.” He will run out of money to stay at home with his caregivers in about a half a year. I’ve decided at that point I will turn him over to the county, with tears. I always feel guilty I don’t phone and visit him more often, but I shouldn’t and I can’t. I’ve had to depersonalize and compartmentalize him for my own sanity. I feel guilty, but I can’t give that guilt great authority while attempting to pre-plan for as many unknowns as I can dream of 24 hours/day.
My mother used to ask (in a bitter and threatening way when she had her breakdowns) – “What is love?” Now I get it. Love could be expressed as the best of the Soother’s/Fixer’s/Nurturer’s intentions. But just as we die alone, we lone wolf caregivers have to deal with expressing our love differently (or not much) because our intentions mean nothing where the rubber meets the pavement.
Give yourself the grace of time and space whenever you can, even 15 minutes parked in your locked car with a decent view. Try to weave in all the other suggestions such as prioritizing what is absolutely critical while separating priorities out from your emotions. Keep your love in your heart, locked up for safety, until the priorities are slowly addressed. Triage until a reasonable system is in place. Try to recognize manipulation and self-criticism. You deserve to get out of this trap. Keep coming back here. Sister -- hugs and regards to you.
There are a lot of ways to help your parents.
First you need to find out how their financial situation is. If they have money saved in different ways or in different accounts. You're their daughter. You can ask the banks or investment institutions (Look for statements in cabby holes, trash cans. They don't save the important documents. They try to save what it only seems unthreatening to them, like offers of trinkets, quick turnout of investments, donation offers of little blessings etc. etc..
As myself I founded those and many more important documents as I said in a thrash bin ready to go to recycling) I believe by default the banks can inform you about about their accounts and the rest of the financial institutions as well.
Don't forget to find out if the house they have it's being paid off.. In overall find as much as you can about their economic status at the present. Before you do anything educate yourself on how to manage their finances..
There are many ways but the best way is to arrange it to be able to use primarily to better their lives and well-being.
To start with, you can consider seriously to placed them in a retirement home with assisted living. There is a lot of resources and people specialized in helping families, friends in charge of their parents or friends. I got a lot of help so I could provide help to my very elderly friends.
Get a Durable Power of Attorney. Talk to your parents about it. If they wouldn't listen request help from a lawyer (They give you sometime an hour of free time or less but you can have your questions ready to be ask.) In any case you can also make a complaint with the Elderly Protection Agency thru the office of Social Services in your area. I did it and they were able to guide my on how to do it.
Following step by step what Social Services told me on how to proceed I was able to place my elderly friends in a lovely Retirement home with assisted living. They love it!! It's the best way they can spend their money. They don't have much, but what they have can cover a couple of years of good living instead of living in a retched way, angry, lonely, neglected and sad.
Search in the web. Most retirement homes with assisted living have agents they can guide your for free. I was able to find an agent who got interested on helping me in every possible way so we could find the best place they could afford...
If they have a house. You can sale it and use the monies of the sale for their care.
There is an assured help if your parents don't have enough resources or financial income... You can call Social Services and they'll help you with the rest...
Still call Social Services in your area. They will guide you and stir you the right way.
I wish you the best of luck!!!
You are right, you need to take care of you first and feel like you are standing firmly on 2 feet, then move on to feeling in control of your family time and affairs and then reintroduce your parents affairs and keep them in balance with your life. It has nothing to do with how much or their right to expect things from you and nothing to do with what you are or aren't obligated to do, nothing to do with your feelings of guilt or obligations, the fact is we each get something both positive and negative from caring for our parents just as they get both positives and negatives from us caring for them. That's all emotional and ever evolving stuff, this is about regrouping and starting with getting basic needs under control, yours, your families and then your parents. I get that these things are interconnected and very easily and quickly can get muddied, I;m making sound more simple then it is but if you can work at trying to separate and stick to this idea after getting some time and breathing room to care for yourself emotionally and feel stronger, in control again while starting from the beginning it should help. You will fly through a lot of it because you likely have far more of it set up and under control than it feels like you do at the moment but make sure you take a moment to recognise your accomplishment and pat yourself on the back as you rediscover these things along the way. Actually remember to acknowledge yourself both with credit for your accomplishments and self serving rewards, treats each and every day. Truth is your parents if given the chance and in a place that allowed it would want you to treat yourself, would give you little rewards themselves so you are doing something for them every time time you take care of yourself too.
Get yourself some RESPITE, collect yourself and your energy then reestablish your control over the basics and reestablish from there. I know you can do this. Take care of yourself first and you will be taking care of everyone else too. Hang in, we are all with you! Whatever you need to do to find your positive self again!
Please take care of yourself. If you were not there, someone would be there to help them.
Counseling has helped me realize that I can't and should not have to fix everything. We want them to be safe and healthy. They may never realize, even if you tell them, the toll it takes on you. So sometimes you will have to courage to say no, sometimes not, but start to have those hard conversations. You will have them again and again. Try to not feel bad for living your own life. That will work some days and others not. Sorry, no quick answer but really take care of yourself!
There's silver lining for you, however. Your journey is just starting and I can tell you from personal experience, DO NOT LET THE GUILT SUCK YOU IN. Your intentions are pure and your heart is big. Of course you don't want to see your parents suffer, but make a decision now and stick with it for your own sake.
I have aged seemingly overnight not due to caregiving, but my lack of ability to say "no". Well, I say it. I just don't stick to it.
You're in for a LOOOOOOONG road. Use the great advice here and don't end up so stressed that you don't feel like going on. Trust me. I know.
I can't offer much advice because I'm a complete basket case! I just wanted to let you know you're not alone in your journey. We've all been there. Try to stay as strong as you can!!
Thank Gid I found a very good Assisted Living Facility for Memory Care in my town called Arbor Terrace and placed him there. I signed a contract there for a companion suite so I could move my Mother there as well.
To make a long story short. If you do place them into Assisted Living, you really need to find out everything about them by asking people that already live there or people whom have left there. You cannot trust the people that work there to tell you the truth. I found out that by law in my state a Memory Care Facility has to have more employees per resident than an Assisted Living Facility.
You also are still very much involved with their care because you and only you are thier Healthcare Advocate. The Employees at these facilities change often and you have to communicate your parents needs to them and then constantly make sure the employees are doing what you requested of them. It's a daily struggle and the more people whom care for your parents the more confusing and time consuming it becomes for you.
If I had to do it all over again I would of placed them in my home with a caretaker. This would of made it much more easier for me to manage. They would be missing out on the daily engagement activities they have at the Assisted Living Faciluties but I found out that most of these places also have a Life enrichment Group run by an independent contractor that takes people that are living at home to the Facility Mom-Fri from 9:00AM-2:00PM which gives you the caretaker a break and keeps your parents engaged with others which is really important as they age.
Many lessons I learned and now that it has come to the end I am very grateful that I had this time with my parents and was able to help them get to eternal life. At the end it just made so much more sense to me that it was all God's plan and part of my journey. At times I was angry, upset and seriously stressed out but now I am at peace with it all.
You just have to take one day at a time and try to find the right people to support you along your way. There is no right or wrong choice. It was the hardest job I ever had but I do not regret it now that they are gone.
I hope that helps you. God Bless You and Your Aging Parents.
Make sure you constantly check thier Med lists especially when they get discharged from the hospital. This is when errors occur because hospital doctors love to change up their meds.
1) Your most invaluable resource is a Seniors Advocacy; find one in your area. If I had done this years ago, it would have made a world of difference. They are your liaison; they know exactly what to do.
2) Tell your parents you will not be involved until you have Power of Attorney and all the requisite sections under the law to make medical and end of life decisions. Period.
These selfish, soul sucking parents never had to look after their own parents. They emigrated, or their parents died young. (by today's standards) Now we're supposed to let these geriatrics hijack our lives, but god forbid we express an opinion about it. My demented father has robbed me of YEARS of my life that I will never get back; time I should have been devoting to my children and husband. I'm sick of it. It makes one truly wonder what the grand plan is here: Pump old people with life-extending meds (blood pressure/blood thinner pills) until they become demented. Let them die a natural death already. The ONLY entities benefiting from this is Big Pharma and the bloated medical establishment. It's insane and it cannot be supported. They want our parents to bankrupt the next generation; it's a multi billion dollar industry and the losers in all of this is ourselves and our parents. Take care of yourself. Don't let it consume you - contact every agency in your area and be honest. Say, "I need some help."
1. Arranged for Meals on Wheels delivery which is now providing enough food for 2 meals per day 7 days per week. My mom is able to fix a simple breakfast. She is of limited income and there is no cost to her or me for this service.
2. Arranged for a home health care aid to come in 3 times per week for 1 hour to help my mom with bathing, brushing teeth, flossing...hygiene related. Again limited income, and low or no cost.
3. Arranged for a person to come in and clean the house and do laundry once per week for 2 hours. Again limited income, and low or no cost.
In my state, New York, it is less expensive for the government to keep people in their homes versus ending up in a nursing home, so funding is made available to assist with some of these services. The office for aging is the key to unlocking these funds.
I have someone I hire for $10 per hour that can take my mom in her car for activities that she can still do.
I still take my mom to the doctor appointments and dentist so I can get the right information to the doctor/dentist, and hear the right information directly. I also go over several times per week to check on her and things, clean out old food from the refrigerator, take out the garbage, check on her pills. etc. I have a check list I follow every time I visit to ensure I can quickly check on everything.
I have also installed 3 wifi cameras ... so I can look in at any time to evaluate what is going on...one in the kitchen, one in the living room, and one looking out into the backyard/driveway. Leaving privacy for the bathroom, and bedroom. I have learned a lot by looking in that I would have not known otherwise. This has been invaluable. I can look in from my computer or from my phone from anywhere in the world.
If either of your parents are Veterans, there is funding available for them there too.
Just need to talk with a VA counselor. In my area, there is one in the same building as the office for aging.
But as you can see, by using all of these services, I have been able to free up enough time to lead my and my family's life in an almost normal way.
All of you have shared such great ideas. Thanks... it really helps!