Here’s an honest look at the challenges of caring for an elderly parent and 6 things to make the process of being a caregiver a little bit easier.
It is incredible to me how one blink-of-an-eye moment can drastically impact your life. Since our car accident two weeks ago we have found ourselves dealing daily with the aftermath. Beyond the physical pain, there have been claims to file, insurance adjusters to talk to, paperwork to fill out, statements to make, prescriptions to fill, doctor visits to attend, and many, many conversations with our girls about what happened. My husband has led the charge, navigating this sometimes sticky process with wisdom and kindness and compassion. He is taking care of his girls, and we are all recovering well.
While my disability at this point is pretty minor, it has reminded me once again of just how taxing the role of caregiver can be. A few years ago, when our youngest daughter Annie was just five months old, my elderly mother-in-law Marie came to live with us because she was no longer able to live on her own. Already mired in the day-to-day chaos of caring for a colicky infant and an active toddler, we were woefully unprepared for this phenomenon called “Sandwich Years,” a time where you have both children and parents to care for.
Hindsight is 20/20, but looking back, I truly wish we would’ve been a little more prepared for the challenges of being a full-time caregiver. I loved my mother-in-law and desperately wanted her to be a part of my children’s life. I wanted them to grow up knowing her and having a close relationship. I thought that the benefits of having her live with us would far outweigh any detriments. There was so much we didn’t know, so much I wish someone with more experience could have had told us.
If I could do it again, these are the six things I most wish I would’ve known:
We didn’t realize, going into it, how many difficult choices would come up. There were an endless slew of medical decisions, financial decisions, and quality of life decisions that constantly needed to be made. Sometimes what Marie wanted to do was at odds with what everyone else wanted her to do; sometimes we were unable to sway her towards a decision we knew was best, causing frustration and resentment. There were many times we couldn’t convince her to make a decision at all.
I truly wish we would’ve had the forethought to sit down with Marie ahead of time, before it was too late, and address some of the end-of-life issues that are so hard to talk about. I wish we would’ve been brave enough to have that conversation. I wish we would’ve been able to agree on a plan of action, to determine what our priorities were and to find out, from the options that were available, what she really wanted most of all. I wish we would’ve had medical directives in place from the get-go, along with power of attorney for both financial and medical matters. We did get them in place eventually, but not before we caused ourselves a lot of undue heartache.
Sometimes kind-hearted people, in an effort to be sympathetic, would say, “wow, caring for your mother must be like having a third child.” We would smile and nod in agreement because, really, what else can you do when someone is trying to be nice? But the truth was that having an an elderly adult to care for was nothing like having a toddler. My mother-in-law had lived a whole life before I was even born. She was set in her ways–and rightfully so.
She was extremely hard of hearing, which meant communication could be frustrating and difficult and LOUD, but she was still capable of having an adult conversation. She had adult feelings too, which meant if we simply went about our daily routine without engaging her–because engaging her took a lot of effort and yelling that I didn’t always have the energy or patience for-she would feel neglected and ignored. Because she didn’t hear well she was often separated by a wall of silence, even while in the same room. This often prevented her from being a part of our normal family life and dialogue. She required care, but a totally different type of care, managing medications, arranging doctor’s visits, trying to convince her to try a hearing aid, and helping her maneuver around the house.
There were sometimes moments in the course of the day that made us cringe, moments related to a loss of modesty and increasing difficulty with bodily functions. We had always loved to entertain, but because we couldn’t predict how or when those embarrassing moments would happen, we stopped inviting people over. In retrospect, perhaps we should’ve been a little more laid back, realizing that those things happen, but at the time it just felt….weird. Having someone live in your house sometimes means seeing and hearing more than you ever wanted to.
Caregiving is often a thankless job, and the effects of that can cause a serious strain on all your relationships. During that time Chuck and I were often stretched to the max, and with no one else to take it out on, we lashed out at each other. We were more easily frustrated with our kids, and often frustrated with Marie as well. There were times where she seemed equally sick of us, and especially of the kids. I had hoped for a closer relationship, but I forgot that sometimes grandparents need a little space from the constant neediness of kids. Frankly, we all needed a little space from each other sometimes, and often there was just no place to go.
Our outside relationships were strained as well. We were frustrated and resentful of family members who had no idea what we were going through. Most of our friends just couldn’t relate to our stage of life, and one by one they disappeared too. Had we known better, we would’ve joined a support group of other caregivers, but I think maybe at the time we were too proud & stubborn to admit we couldn’t handle it all on our own.
That is an important distinction to remember, and one that didn’t occur to us until it was too late. Don’t get me wrong, all the doctors who helped care for my mother-in-law were kind and compassionate, and truly concerned for her well-being. But their first concern was always dealing with the physical concerns that would prolong her life as long as possible–managing her blood pressure and her kidneys and her diabetes. It meant lots and lots of pills and tests and doctor’s visits, and then later, after she had a bad fall and ended up in the hospital, even more extraordinary measures to get her “well” again.
Had we the chance to do it over, I think we would’ve looked at the situation much differently. Our primary concern would’ve been making her final years and months as enjoyable and comfortable as possible, without worrying so much about prolonging her life as long as we could. At the very least, we would’ve realized that our job as caregivers was to advocate for quality of life, knowing that the doctors were approaching her care from a different perspective.
After living with us for seven months, my mother-in-law decided on her own that she would like to move to a nearby assisted living facility. It wasn’t until someone else was sharing the responsibility for her care that we realized how much we had needed the break. Being a full time caregiver is at times difficult and stressful, especially when you add kids and the rest of life’s demands into the mix. Sometimes in the midst of the daily grind it is hard to see the forest through the trees, but had we known how desperately we needed to give ourselves a break, perhaps we would’ve tried a little harder to find respite care.
Looking back, I now realize we entered our caregiving situation with a blind naivety that ended up causing problems that may have been avoidable. I am so very thankful that we managed to resolve them, and that we were able to maintain a close and loving relationship with my very dear mother-in-law to the very end. I am also so grateful that she was once again able to enjoy spending time with her granddaughters. She was a wonderful woman with an amazing heart, and I still miss her a lot.
My hope is that sharing our experience–and the lessons we learned–might help those of you who are caregiving now, or will be in the future.
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I know too what you have gone thru. We got OLD Dad. when it seemed no one else had time or wanted him.. BLess him he became my potato peeler. He said it made him feel useful.. We kept him till it just seemed he gave up.. He had issues with his legs where they got so bloated with fluid that I would have to put him in the hospital. Then I would go see him everyday.. He called me the night before he passed away It was GOOD FRIDAY.. AND Said are you not coming up here.. (being one of 7 children) he seemed to need me every day.. :) No PROBLEm.. he would call me several times aday and ask how things were going.. SO I had told him that night "Well Daddy since you had a visit that I would stay home tonight .. THe nurse had come in to put him to bed.. and I told him Daddy give your phone to the nurse so you dont call me at 3 in the morning OK.. HE laughed and the nurse put his phone on his tray table.. I had told him I loved Him and would be there THE next day. He had been in the Hospital for 3 weeks. and only got a few visits from brothers and sisters.. Some he had begged me to get to come see him.. STUBBORNESS and Anger at him kept them away.. I had put a load of clothes to wash an heard my phone ring.. I ran up stairs and figured it was daddy so I called it back.. TO HAVE A DR.. Say.. those words... and the shock of what had happened to my DADDy.. HE was gone.. I wasn;t there to look into those big blue eyes.. and tell him I loved him one last time. I had to call them and tell them that Daddy had passed away.. To break that news to them... Some came right away.. others got mad at me because they couldnt hold his body in his room more time til they got there. 28 calls to find out she had been out cleaning her yard.. SHE got mad at me... I have 2 sisters that have stuck with me since all this happened. And I have to go to Court soon.. for the one that hates me... I didnt know what DADDY had planned in his WILL... HIS last words to his LAWYER were IM TAKING CARE OF THE ONE THAT TOOK CARE OF ME.. SHE WAS THERE WHEN I NEEDED HER... any time I needed something all i Had to do was ask RITA. Yes i was Daddys caregiver his daughter his friend and his confesser... he told me so many things . HE was a Stern father growing up.. AND I FORGAVE HIM OF EVERYTHING.. WE talked and talked .. He told me stories of the Service.. OF Hard times.. in the depression.. I held his hand when i got to see him in the hospital.. Like I had done many a time when i was a kid. I love you Daddy and I would do it all again.. THANK YOU FOR BEING A PART OF OUT LIFE.. and making me a better person. Love rita.
Rita you are an angel. I took care of my daddy too, and nobody that hasn't done this has NO idea on all of the myriad of responsibilities, the mental and physical toll it takes on the caregiver and everyone around him/her. But it still is a gift to be able to care for a loved one. I got closer to my dad while being his caregiver, and that is a huge gift that I will always appreciate. Sadly, I also experienced some mistrust by a relative which totally caught me off guard and shocked me. I thought, "you have NO clue as to what it took for me to do this". Then I realized, that's why they don't understand because they have no clue, so it's not their fault for not understanding. (The forgiveness is more for me than him I think.) Bottom line is that it made me stronger and feeling blessed for having experienced caregiving of my daddy.
I care for a friend who had a stroke and have done so for 8 years. I am her Power of Attorney. I can relate on so many levels. My friend is not a senior, so when she had her stroke the thought of putting her in a nursing home at 50+ was unthinkable to me. This has been one of the hardest things I have ever done. She owns her own home so I gave up my possessions and my rental place to move in and care for her. She is wheel chair bound and right side paralyzed.
The doctors appointments, the weekly visits to hospital for INR's, the finances, the community services wrapped around her: My friend can not speak and I had to explain aphasia to professionals.I have to speak for her. She can neither read nor write: the physio, and on and on.
She too, due to her loss of communication skills, lives in a lonely place. It can sometimes take an hour to understand that what she wants is a simple cup of coffee. As her PA, I made a decision that I would not sign any financial papers without first attempting to explain to her what is was I was doing and why.
You talk about family and friends not understanding and falling away. Her family, who have visited her 5 times in eight years call to put demands on me.
The biggest surprise to me was the way that lawyers, bankers, etc treat a PA. I expected they would be supportive and helpful so when I ran into suspicion and mistrust I was quite stunned. It was a fight to get her needs met.
She and I are just now discussing a retirement home for her. I was told by a worker that quite often the caregiver dies before the person they care for. I am so tired.
You've addressed this so well re:family, I tip my hat to you and others who care for non-family members. I too am mother and grandmother and until a year ago, daughter.
Take care of yourselves!
I can relate to all of this. Except for the kids, I have none. I also share my life with anyone who would like to read about it. lifeofaprilwhitehair.blogspot.com My mother has Alzheimer's and I am her caregiver. Learning to do my best with all I have been given, good and bad. Thanks for sharing.
Your post is true! Mama is 89 and lives on her own, still driving, still very active. We have always talked about what she does and does not want to happen toward the end of her life, whenever that may be. The points you brought up about Medical Directives, and Powers of Atty for legal and medical are valid, not only for aged parents, but siblings or other relatives that may come to live with you. Gay & Lesbians should also protect their partnerships in the same manner as they do not have the same legal rights as husband and wife. Even for the legally wed, wishes and wants for end of life should be written down. Many doctors will prolong life at any cost. The nurses tend to be more 'practical' about quality of life and not just living. (I am an R.N.) With different medical professionals giving their honest opinion about what the best thing is, plus the wishes of the ill, adding in what each family member thinks is the right path..... that's a lot of paths and a lot of confusion. Writing out what you want can ease decision making, especially if you are unable to speak for yourself.
I hope that Mama lives many, many more years, then drops dead of a massive coronary while doing the tango with a handsome man on a cruise to the Bahama's!!! Those of you who have witnessed long, devastating illness leading to a lingering death will understand exactly why I hope she dies quickly and while laughing. Those that don't understand? I pray you never have reason to.....
my mother died a very slow death. she died of C.O.P.D. it was painful to watch her waste away.
I too am caring for my mother with COPD. I'm an only child so when my step dad passed away 2014 my husband and I moved in with mother. Honeymoon phase is over and this is really starting to get to me. I'm 54 mom's 72. I haven't had the heart to ask for respite care yet that makes me feel like I'm giving up but my attitudes declining I'm in a dark place with it all right now. My health is declining too and I know she will need more help I'm so tired of doing it all. Husband isn't a big help either alcoholic so I deal with it all here. Just went to doctors today mom's gained 20 lbs from sitting and snacking all the time so she suggested we walk funny she never wanted to before because she's always out of breath....I don't even have the strength to take care of me and it's one more thing I have to worry about let alone plan meals run errands and all that's needing done around here. Thankful the finances are all in order for that day. Just don't think I'm going to survive this! Feel bad for her feel bad for me need a long break. Still trying to sort thru all step dads things and organize this house but can't get anything accomplished feel guilty if I'm not around her the biggest part of the time...and so the story goes..started counseling last week to work some things out for me too soon to tell if that will help. Mom can tell I'm getting tired and disgusted she cared for step dad 2 years before he passed so yes I feel guilty when I'm feeling like this. Just want to die.
Hi Wilma,
I'm so sorry you are struggling right now to taking care of your mother and your husband. I think you should contact someone in your community regarding respite care. It sounds like you could use the support and there is nothing wrong with admitting you need help. Praying for you and your family! :)
Thank you for answering my post.
Yes I'll be checking into that SOON both caring hands and visiting nurse I need both! Plus a full time maid cook etc
You are spot on...and no one can EVER truly empathize with what it's like until they have been there and LIVED it. Thanks for sharing your story. Hopefully it will help others out who are going through it! Blessings!
Ruth, thank you for sharing, reminding us that life is short and that we need to plan ahead. I have not taken care of an elderly relative but when my daughter was in hospice it change my whole outlook on life. (She is still with us and doing well.) Hospice was wonderful and helped us in so many ways.
Three of the most amazing years of my life was when my mother came to live with me. My children were already grown. My eldest son was living with me because he had lost his family, car, and career due to mental illness. The three of us spent those three years loving and caring for each other. i am a registered nurse so i had that part down. Medications, hospitalizations, doctor's office visits were not a problem.
Mama had no control over bladder or bowels, so that was a problem for my son when i was at work. The first time he did not clean her and change her diaper, an ugly red rash appeared. After my explanation on the matter, it was no longer a problem. John took such wonderful care of his grandma. John was thirty-something!
About a year and a half into this thing, i had emergency surgery for removal of a hematoma in the calf of my leg. After that, i did not go back to work, but chose to stay at home with John and Mama. We all slept in the same room together. Mama in her hospital bed was in the middle. John and I were in twin beds on either side of her. At night i read books to them. i get dramatic when reading aloud, so often times we were all three laughing out loud. We also talked and talked and talked some more. We sang hymns.
We spent over a week without electricity during Hurricane Ike. My pastor brought ice and meals from the FEMA center every day. During the actual storm, Mama and I slept while John stood watch. About 4am he woke us up and we all gathered in the hallway. Mama was on a roll-a-way bed. John, the 3 dogs, a dachshund, a sheltie, and a rottweiller, and I were sitting on the edges of the bed. It was so hot, and so enclosed! Turns out the train that John had heard, which he thought was a tornado, was only a neighbor's generator.
On Sundays, i would turn the speakerphone on and the preacher would put his phone on the pulpit, and while John was at church, Mama and I would listen to the sermon on the speakerphone. John cooked all of our meals. i took care of all mama's hygiene problems. When we found out that Mama was going to die within a matter of days, we were devastated, including Mama. We had all three had such a special time together. It was so difficult for it to come to an end. Four years later, i still have periods of deep loneliness. John has married and moved out of state. i live by myself. My children and grandchildren all live far away. Those three years were so very special to me. Thanks for letting me share them.
Beautiful acceptance and willingness to love! Thanks for sharing and God bless you!
Thankyou for sharing your story Louise Marie. Your memories are precious and bought me to tears. I love your heart and the practical, no fuss, way you were able to lovingly care for your Mum and your son. You can be proud that your Mum knew she was loved until the end (and beyond) and that your Son is able to live his own life. What a great role model you are! God bless you as you work through this next season of your life.
So, so true. Thank you!
What a wonderful and helpful post. Thank you for sharing with us.
I had no idea you and your family were in an accident?! I'm very glad that you all are okay. Whew, scary. Been there done that, no thank you!
Thanks for sharing that article on your experience as a caregiver. We have been caring for my mother for the last 14 years (7 in our home and 7 in a nursing home). Even though a ton of the day-to-day stuff has been taken off our shoulders by the nursing home, we still have plenty of responsibilities in this regard. As a wife and mother, I found (and, sadly, still find) it a difficult balancing act -- giving enough time to my mother so she feels loved, to my teenage daughter so she feels loved, and to my husband so he feels loved. In the end, at least for now, there's not a lot of "me" time and that's okay because it's temporary. I just really appreciate your putting your perspective out there because it is exactly what I experience. I hope that people who read your article will think twice about what they say about the situation and appreciate how hard it really is. Thanks again.