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When you care too much to be the caregiver

Updated: Sep 27, 2021

For many individuals who find themselves being the primary caregiver for their aging parent, spouse or loved one, there comes a point where they realize the time, effort and sometimes heartache they must endure when walking with someone who's health is declining is no longer serving either party. Resentment can start to fester. The physical strain of constantly assisting someone transfer in and out of bed or a wheelchair or even the mental stress of worrying about their frail loved one falling and getting injured eventually takes its toll. You are, human, after all and while your heart is full of the best intentions possible, there can be a point where you have reached your limit.

I have met so many people who find themselves at this particular fork in the road. They want so badly to be there for their loved one but also struggle and grapple with the reality that truly caring for their loved may mean having someone else take the reins. They are filled with guilt, shame and even sadness when debating whether it's time to come up with a more sustainable care plan. The truth is, there is never usually an option that is 100% perfect; there will have to be compromises made and grace given when pursuing alternative care options.

According to a 2009 study conducted by the National Center on Caregiving called "Caregiving in the U.S.", 14% of unpaid caregivers (e.g., spouse, adult children, relatives) rate the physical strain of caregiving as high. Additionally, 31% rate the emotional stress of caregiving as high. And, according to the National Alliance for Caregiving, 23% of family caregivers taking on this role for five years or more reported their health is fair or poor. Even more alarming is that 40% to 70% of family caregivers have clinically significant symptoms of depression. Note, these statistics were taken pre-pandemic; with mental health issues being reported at an all-time high during the past 18+ months due to Covid, I'm guessing the aforementioned statistics are even higher. One thing is for sure -- caregiver burnout is not only a real thing, it is also very common among households. At some point, something has got to give.

Last year, I received a phone call from a lady looking for a place for her mother who was 102 years old. She herself sounded frail and a bit confused on the phone, so I asked her what her age was and was shocked to hear that she was 84 years old and was the primary caregiver for her mother! Neither of them had any living relatives left and it was just the two of them trying to survive life together. She decided it was time to get some help since she was having such a difficult time helping her mother in and out of the shower. She said she was so scared she'd be the reason her mother fell and was desperate to find another option. Unfortunately, our homes were full at the time and we were not able to accommodate her mother. She ended up calling me three separate times that day -- each time forgetting our previous conversations. The fact that this person was in charge of making sure her mother took her medications on time and also be the one who prepared their meals, provided transportation to doctor's visits, etc. when she, too, clearly had cognitive issues, was alarming. It saddened me that these two elderly women were in this type of situation and while I wished I could accommodate them both at that time, the only thing I could do was provide additional resources for them to try. With people living much longer these days, I'm sure this particular dynamic is much more common than we think.

And then there was the husband, who had spent years trying his best to take care of his wife who was diagnosed with Parkinson's disease and dementia. They had been married 60 years and after a lot of discerning and heartache, he concluded that it was no longer safe for him to be the primary caregiver for his wife. Having had his own health issues, it was time to find a better alternative to make sure his wife was receiving the care she not only needed but deserved. He moved her into our home on the eve of their 60th wedding anniversary and while she felt like he was abandoning her and not being true to his "in sickness and in health" marriage vows, he made the tough decision to leave her at our care home as his anniversary present to her. He promised to return and visit her everyday -- which he did without fail -- even if their visits always ended in tears when they had to kiss one another goodbye for the day. Given her dementia, he had to explain to her every day why she was in a different home and why she couldn't go home with him. He literally had to break her heart at the end of each visit and continued that difficult exchange daily because he knew in his heart of hearts, he was showing just how much he cared about her by having someone else do the day-to-day caring.

Recently, I met with the daughter of a potential resident. She was a doctor and was the primary caregiver for her mother who also lived with her. As her mother's health continued to decline, she also became quite incontinent. Although this lady was exposed to the not-so-glamourous side of working in the medical field and had been around having to clean up and deal with bodily fluids all throughout her career, she had to draw the line when it came to having to clean up after her mother and change her diapers. With tears in her eyes and her voice shaking, she looked at me and said "I had to tell my mother that the minute I had to change her diaper and clean her up, I could no longer be her daughter. And I want nothing more than to simply stay her daughter..." Upon hearing this, I, too, got choked up and understood immediately what she meant by that sentiment. When my father was in the hospital, he needed help using the bedside commode but refused to get assistance from any of the hospital staff. He was embarrassed and his pride made him decline everyone's offer to help him with his toileting needs. Since I was the one he relied on the most when it came to his health stuff, out of desperation, he reluctantly asked me to help him on the toilet and then clean him up. Even though I never imagined I would ever have to do that for my own father, I, of course, agreed to help him and be the one to clean him up. Within an instant, I went from daughter to caregiver and our dynamic did shift slightly since that moment. He had never had to be so vulnerable with me in that way and while it did bring us closer in some regards, it also added a new layer to our relationship and an unexpected responsibility to be the one he turned to when he needed help with toileting, catheter changes, or anything uncomfortable and hard to deal with.

As they say, "You can't pour from an empty cup ..." Sometimes, when you are the primary caregiver, you tend to get so immersed into the needs of the person for whom you are caring that you forget the importance of making sure your needs are also met. For some, it takes a humbling and ego check to realize that they are no longer suited to be the one who should be providing the care. For others, there is no other option and they feel stuck, alone and under water; finances and familial dynamics leave them no choice. And for others, they fall somewhere in between but are afraid to rock the boat and seek the proper support they need. Wherever you find yourself on the spectrum, I think the important thing to do is to be open and ready to pivot if and when necessary. It is absolutely noble to be able and willing to care for someone who has cared for you all of your life. But as things progress and as life happens, the title of "primary caregiver" doesn't necessarily have to be such a literal thing, but more of a figurative one. By having a care home or hired caregivers do the heavy lifting and lighten your load, you can still play a pivotal role in the quality of life of your loved one. By being able to take a step back and away from the demands of the day-to-day minutia, you can have better clarity on what the needs and desires are of your loved one. You aren't so bogged down with the physical and emotional strain and can be more fully present than ever before. Life is too short to have any regrets or to live in a reality filled with tension and resentment. There is a better and healthier version of both your life and the life of your loved one -- you just have to be brave enough to pursue it.

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