I'm a 43 year old only child (only living family member to be more specific) who works full time outside the home, and takes care of my 88 year old Grandfather full time inside the home. I have been doing this for about a year now (feels like 20). I have no family to help, and and am finding the 15-20 hour days, 7 days a week, to be overwhelming and exhausting. I love my Grandfather with all my heart and do all this with a smile on my face, but I'm drowning and things just seem to pile up a little more each day. I am missing 1-2 weeks of work a month just to take him to his medical appointments, ER visits, and hospital stays. I spend my lunch hour (when I'm actually at work) making phone calls to doctors offices, keeping appointment calendars, and a personal calendar to see how I'm going to get it all done. At home I'm a cook, maid, psychiatrist, nurse, chauffeur, admin assistant, banker, lawyer, accountant, and on some days a punching bag when he's in a bad mood (verbal, not physical). All of my "friends" have given up on me ever having a life again so they've walked away. My dating and social life has come to a screeching hault. I'm a very patient and laid back person, but this is killing me. I find myself now feeling bitter and envious of people who have the freedom to do something as simple as run to the mall or have lunch with friends. And that is so out of my character. I know it's just burnout. I would love to hear from other only children out there doing this alone.....and some words of wisdom on how you find a balance! God knows I'm trying.
Yep, I'm an only child too. I'm 47; my dad 91. I entered into caregiving somewhat unvoluntarily but decided it was another opportunity to better know my parents. I moved from the big city 10 years ago back to the stifling backwoods of my youth to care for my parents who were "on their deathbeds and needed me desperately."
First rule of caregiving club: Know thy narcissistic parent(s). They will pull any and all punches to get you back in their clutches.
I miss 1-2 days a week from work taking him to appointments, and have for the last six years. My mom passed a year and a half ago, and he is clueless without her. He has always had a huge problem of not listening, so all phone calls, appointments, bill paying, grocery getting, medicine supplying is coordinated and/or attended by me. I call him daily as to not be harassed by his barage of calls should I fail to call. (I am the only person he will talk to on the phone - blessed me.)
Second rule of caregiving club: Be prepared to give up your life.
He is a man who loves the sound of his voice. He believes his word is gospel and must tell everyone and reiterate it three times to make certain they understand, whether thy agree with him or not. He tells his doctors, nurses, techs, other patients in the waiting room what he thinks is wrong and how they "mess things up for him," but never listens to anyone. According to him, reciprocal listening has never been part of communication. Any time I have ever expressed myself, he is finished with the conversation. I avoid this now when he starts in on me by getting up and leaving because after four decades, I don't have time or patience for one-sided conversations. Of course, he's adapted by only starting these conversations with me when we're in the car or restaurants because captive audiences must pay attention. The car is unavoidable so we only travel to appointments; we no longer eat out because of his loud tirades.
Third rule of caregiving club: Parents don't change their ways; don't be swayed by their pathetic frailties, make and rigorously enforce your boundaries.
Next week is the first week in years, I don't have to taxi him to an appointment. He was busy thinking up chores for me. I just elder fibbed and told him I would be working out of town. He snorted and said, "you don't really work" because if it's not parent-approved, it's not valid. Then he proceeded to tell me that I had the rest of my life to work and do what I wanted after he died, but until then he'd keep telling me what I was doing wrong until he "broke my sassy spirit." With that, I imagined smacking his head, it twirling round and round cartoon style until it popped off and fell out the window. I just left it there in the fast food drive thru. : )
And with that, the fourth and final rule of caregiving club: Put on your armour and feed your imagination. It may be the only thing that preserves you.
Admittedly, I see many people out enjoying their elderly, I am jealous. But I never had that relationship with my parents, and I'm smart enough to know I never will. Hopefully, I will be strong enough to survive them. One down, one to go.
And serious blessings to all of you doing it far more graciously than I. I pray for grace but somehow end up with sardonic humor : /
A dementia patient can require 8-15 years of care + hospice. Other conditions can progress over a longer period of time.
Where my mom is -on the low end of needing services- there are probably 25 people who contribute to her care in a day, from the kitchen staff, security, nursing, doctoring, administering the business paperwork, health aids, maintenance. They also take shifts. It's not the same crowd of staff 24/7/365 for a reason. Her need for services will only increase, as she stops being mobile, can’t bathe or dress, can’t toilet, can’t feed herself.
Here are some of the beliefs/values I have that got me this far. I don’t know if it will help anybody else. If you don’t agree – super - you have to live your own values and so do I.
- I don't believe I can do a better job than someone else or that it has to be me doing it. I do believe I have limitations and she will actually be more compliant/easier with other people who are “authorities” vs me, the "child".
- I believe mom must be safe. This may not be possible in my house or hers. (At this point, it isn’t.)
- I believe that we need to keep as many options on the table as possible for her care & wellbeing, and not get boxed into a very narrow set of rules that can’t change.
- I absolutely will not use my personal finances for her support. Our budget can’t include her growing needs. When her money runs out in the near future, mom will go on assistance. To be brutally honest, if it’s a choice between funding my kids’ education and future vs. mom, I’m going to fund my kids’ needs because they are the future of this family.
- I don't believe "honor thy father & mother" means at any cost or sacrifice to life, health, wellbeing, sanity, and financial stability.
- I don’t believe taking care of mom at our house saves money.
There is an added cost to bringing a high need adult into the home. More groceries, more laundry, more cleaning, the wear & tear on your home & appliances, and yourself. The neglect of repairs and maintenance that typically happens in these situations. The added mileage on the car, the extra gas to run mom to the doctor, pharmacy, therapy, here, there, and yonder. It adds up. Who is going to replace your washing machine when it breaks from constant use? Who is going to replace the carpet and the bed in your house because of the poop & pee accidents over time? You are. Are you submitting back to insurance, Medicare/Medicaid expenses for allowable expenses? A senior care facility will.
Your time as the in-home caregiver is absolutely NOT free. There is a way to get paid for doing it full time, but there are strict rules about how that is possible. Department of Labor/Bureau of Labor Stats says the median pay is $10-15/hour for home health/personal aides. If they get hurt transferring mom, they have worker’s comp and the agency will send in somebody else. If you get hurt transferring mom, you are slap out of luck in a hurry because there is no backup help or worker’s comp for you. They also get some shift assignment flexibility that you do not. And they can probably take time off when you cannot. Have you had training in universal precautions? They have. Do you have the right protective equipment at home? I had a family member accidentally prick her finger with a needle she had used on her HIV+ partner in the administration of some of his medication. It was a very sad turn of events and she is no longer with us. What kind of risk is now posed to you and the other family members who live in the home? It’s a good question to ask and think through.
A lot of people don't pursue senior housing because they assume they have to pay for it with their own money - and you DO NOT. Your money doesn't enter into the equation unless you put it there. Another stigma is that all the senior places are full of thieves and abusers, and they'll just kill grandma at the first opportunity. I toured the ones near me. I asked for references, I talked to people who had a loved one there who weren't references. Look at their licensing, check for complaints to the state board of inspection. It was just like finding a daycare for my babies. Use your brain, eyes, ears, nose, and gut feelings to find the right place, or the right other alternative. Don't set her up with the family heirlooms in a care facility, or anything that can’t be replaced. If you wouldn't send your kid off to college with it, it probably doesn't need to be in grandma's apartment.
I hope this helps somehow.
My hubby is an only child and his Mom lives with us too. Hubby works 7 days a week 365 days a year so that I can stay home and care for the Mom's. It is starting to get to him. A once kind, gentle and quiet man is becoming angry.
Friends........I have none anymore. Like all the others commented above, when you can't socialize you just seem to be forgotten. Caregivers are isolated and in my case my home has become my prison.
Recently hubby and I have talked about placing the Mom's somewhere for our well being and theirs. When my Dad was alive and living with us we had an agency come in and help with him and that was great. At this point as selfish as it may seem I want my house and my life back. We have an appointment with an elder attorney to check out our options. I cannot stress enough how important it is to get an elder attorney. The attorney deals only with elders and they are on your side.
I wish you so much luck. Take time for yourself and get help. I have been doing this caregiving thing for over 6 years and I can't do it anymore. Admitting that to myself and taking the first steps in getting help has made me feel so much better.
You must find help to manage care for your Grandfather. You did not mention that he needs assistance during the day while you are at work.
So start with having someone come in two hours a day around lunch. They can fix lunch, make appointments, do his laundry, get dinner started, tidy up, etc.
It could be a neighbor or an acquaintance. Try to find someone that is flexible and responsible that could take your grandfather to the doctor if you could not.
What is going to happen to your grandfather when you collapse of exhaustion? You must remain healthy and not neglect your health to take care of him. Let your grandfather know and if able help choose a suitable candidate to help with the care giving.
If you are afraid of offending your grandfather, tell him they will be coming iin to help you. Take care of thing around the house.
Start with making your own doctors and dentist appointments. Something tells me they are overdue.
Good Luck!
Anybody that wants them can have them!
I had become infuriated, bitter, angry, you name it , I was it. All of my friends have long since flown the coop. As you said, I found myself getting envious of folks talking about their lunches out, shopping trips, and for me, even just getting to go somewhere, anywhere, would have been a welcome break. I have had no breaks from any of this. Mama is bedfast, requires 24/7 watching, is completely incontinent and has advanced dementia / alzheimers.
All of that to say this. I would be lying to say I still don't become livid when I think on how we have been abandoned. I cannot believe that a woman (my Mama) who has always been there for anyone and I do mean anyone and everyone, could have been so hatefully forgotten and brushed aside....I have finally had to come to peace with all of it because I discovered if I did not, all the bitterness was going to get in the way of my taking good care of Mama. It is not right. Nothing about it is right. People ought to be ashamed of themselves...But people are low, greedy, selfish, incompassionate and just uncaring in general these days. I know my Mama would tell me to leave them to their own devices and that God would deal with everyone in His way and that I did not need to worry. I am trying to do that...I still get angry, still get to the point where I catch myself sitting on the deck with my morning coffee while Mama sleeps and plot on how I can "get them" one day...then I come back to who I really am and I think my Mama and Daddy would be proud of the woman I have become...I think you can be proud of yourself too. In the end, you will have peace in your heart knowing you did all you could....I would much rather be in my and our shoes than all the others...Hang in there....the good moments do happen and when they do, for me they make up for all the other stuff...
My parents are still independent, thank goodness, but it is the "Driving Miss Daisy & My Dad" that has me totally stressed out. I cannot imagine what you are going through with having an aging relative living in your home plus having you working outside of the home. My Dad wanted me to quit work so that I could drive him and Mom everywhere, which would be 2 to 4 times a day. No thanks. I asked Dad if he had quit work to drive his mother when she was his age.... of course, not.
Because my second job is that of chauffer, I, too, am juggling work with doctor appointments, etc. and I also lost my friends because I wasn't available to catch up with them anymore, maybe an e-mail at Christmas.
Try to find a retirement village that will be financially comfortable for your grandfather. Imaging all the new best friends he could make there, and all the great stories he can share. Some of these villages look so great, I would be ready to move in myself.
I, too, resent this time in my life. When my parents were my age they were traveling all around, going to the movies, eating out. Not fair, not fair at all. My parents never took care of their own parents because they had sibling that did the work, thus my parents are clueless how this is affecting me.
My parents occasionally say "what would we do without you" whenever I drive them somewhere.... and I respond back "probably need to do what I will need to do, call a cab, since I have no son or daughter to call to drive me". But that never sinks in.
I feel better knowing she is in a place with 24/7 nursing staff, an emergency pull cord in the bathroom, life-alert, a dining room that serves 3 meals a day, and living space purpose built for people in wheelchairs, with walkers, etc. They have staff come in to give her meds, and when she needs help with the daily activities of living, I can add on that service. She can age in place. It's a brilliant idea. She even gets her PT done on site, and the doctors visit residents in their apartment once a month. I could not do this in my home.
You are right, this is killing you. If you don't take the bull by the horns and create a plan for grandpa's care, you'll be the next one going down. There comes a point in time where you have to give yourself permission to need and take help.
This can come in the form of home health assistance, elder day care services, and moving Grandpa into a longterm health care facility.
For my mom, it has been better for her to be where she is than living at home alone or with us. We all get a break from each other. We can go over to visit, eat in the dining room, and participate in activities. She is in a community of people her age & much older, people with the same medical & dementia problems.
Contact your local area agency on aging, and look into what is available for help. You deserve breaks, you deserve respite, and you deserve the time to build your own life. Letting others come in or sending Grandpa to where the help is, has nothing to do with the amount of love and care in your heart. It's about doing what is good and healthy for both of you.