This week I read an article a friend of mine shared on Facebook. It had to do with families who have special needs children. I agreed with most of the premise in the article. However, the author stated that nursing homes would be empty if only family members were willing to sacrifice. That – I certainly don’t agree with.
No, I don’t have a special needs child. I do have a cousin with two special needs children, and my husband had a sister who was developmentally challenged. I have watched both families struggle to make sure all were well cared for. For 15 years I have worked with families facing tough situations and challenges as they struggled to provide care for a loved one with Alzheimer’s. And I have a mother who is in failing health with two progressive, degenerative diseases.
I actually did the brave but probably stupid move of commenting on the article. My comment was simply that “families struggle mightily with tough decisions and sometimes there are extenuating circumstances and situations where the right decision just might be a nursing facility. I don’t think we should ever “judge” what we view as someone else’s sacrifice”. And lo and behold the author of the article responded very angrily. She informed me that it was “trendy” to tell others not to judge and that there was absolutely no reason why someone, no matter the condition/illness/etc. couldn’t be cared for at home.
Clearly, for both that author and me, if we put it out there, we must expect that someone might just disagree with us. That is a risk I take every time I post a blog – or post anything on social media. So, first, she needs to toughen up!
But secondly, seriously, now dare we, any of us, sit back and judge or even challenge, from afar what constitutes “sacrifice” for someone else?
I learned from years of facilitating support groups, that one person cannot and should not judge another person’s pain. Sure, you have the fakers out there, who try to exaggerate their hurt or pain for whatever warped psychological reason. But in general, your pain is your pain. We should never try to gauge if your pain hurts more than my pain. There is no way to measure or prove whose pain is more intense or “worse” so don’t even try. The same goes for sacrifice.
Each family situation is different when it comes to caring for a loved one with a serious health or developmental challenge. And each family may come up with a different solution. I caution families to “never say never” – never make specific promises or rash declarations about what you will or will not do, because you simply don’t know what the future may hold and what sounded like a great solution now, may not work a year down the road. Finances, other family issues and challenges, what other resources and assistance are available, your own health challenges, might all be a factor in decisions about care.
I do know one thing for sure. (to paraphrase Oprah) Actually I know several things for sure about caregiving and one of them is, it will be harder than you think. No matter how determined you are, or how organized, or how many resources you have, it WILL be more difficult that you thought it would be.
And the one difficulty that you simply cannot know or prepare for is the emotional challenge. In fact, that may be the biggest sacrifice one makes as a caregiver. You will sacrifice your emotions. You will begin a ride on a roller coaster of unfathomable twists and turns, highs and lows. The guilt will hang over you like a huge dark cloud. You will second guess yourself at every turn. You will research and consider and ask others, and read books and in your heart know that what you are doing is the best thing, but then guilt will creep in. It will nag you and harangue you like no other emotion.
My family and I did all we could do to keep our mother in her home. Her illness and our circumstances, her doctor’s advice, and two consecutive broken hips finally made that impossible. And frankly, it made sense. Why should we spend mother’s resources on heating a huge house when she lived in two rooms? Why should we spend resources on extensive repairs when we may need that money to provide for her personal and medical needs for many years to come? Why should we keep her somewhere, where none of us live? Where we cannot be there at a moment’s notice to assist or be with her?
Assisted living met our needs for many years. But even in assisted living, I was on call at all times. My mom’s needs super cede my own. I have cancelled trips, spent many sleepless nights – some just worrying but some in the recliner in her room at the assisted living- and even left my full time job in order to be available for whatever she needs, whenever she needs it. But advanced illness means she must how receive more intense care. And a skilled nursing facility is where she can receive that care, 24 hours per day, 7 days per week. My own home is not designed to care for an ailing aged person properly. I am not a nurse and there are simply things I cannot do for my mother. 24 hour nursing care in the home is cost prohibitive. Yet someone else can write an article that says “nursing homes would be empty if families were willing to sacrifice” and the guilt returns as my anger rises.
Heck yes, there are some facilities where, as I often say “I wouldn’t put my dog there”. But facilities are necessary – like it or not. And we as a society should make sure those places are regulated and monitored properly. They should be expected to and held accountable for providing quality care – not just on the logo on the side of their van- but in the actual day to day care for those who reside behind their walls. But don’t tell me what I have sacrificed or not sacrificed. Don’t tell me what I “should” do, when I have pondered, prayed, sought wise counsel and spent many hours seeing to my mother’s wellbeing.
This morning, my mother shed tears and said she wanted to go back to her home. But in this place, where she now resides, wounds have healed; medicines are given properly and in a timely manner; equipment she needs is ready at hand; and the extra human hands we need are nearby as well. My heart broke once again, and I shed my own tears. But I know this is the best place for her at this time. Whether our sacrifice, both mine and my mother’s is greater or less than another’s is not the point. That both of us are sacrificing much and that love is at the core of all most certainly is the point.