Sacrifice

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.

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5 thoughts on “Sacrifice

  1. Debbie Wilson

    Thank you so much for this! You have summed up my feelings, especially regarding the guilt I often feel about having my mother in assisted living. She has early-mid stage dementia. I often wish she could be in a different living situation but she is safe and actually content where she is. Again thank you for sharing your experience and understanding.

    Reply
  2. Darlene Morris

    In my profession and in my personal life I have seen people trying to care for their elders in their home without sufficient equipment for good care. I have seen families fight about what is “best” and I have seen caregivers die and the one needing care still living. Then who will step in to provide care? It is a must to have medical and durable powers of attorney in place as to desires and who is the executer. I, as a nurse, was the chosen one who retired and moved across the country to care for and be with my Mama. She was suppose to come live with me, per my deceased fathers desires. But when the time came, she refused. Without family support or other family available, I succumbed to her/their wishes. Should I have done that? No reason to play the shoulda’/woulda’/coulda game ’cause there is someone there to do it for you. I know, beyond a shadow of a doubt, my mother received the best care that could be given. And when she just progressively died in a Skilled Nursing Facility, I knew that she just gradually went to sleep with people around her who cared for her and loved her. Was I there to hold her hand? No, but the person who called me to come, held her hand and told her how loved she was as she slipped out of her earthly body and at home with her Lord. By the time I got there, she looked very peaceful. At her Memorial Service, on a terrible winter day, people drove distances to show their respect and love. Many came from the Skilled Nursing Facility, who had become like “family”. Jane, in my experience you are doing what you think best, and I commend you for it. We cannot judge! Just support!

    Reply
  3. savvysandwicher

    Wow! I’m glad I didn’t read that other post. We sandwiched moms already have so much guilt! Feeling we are never enough! Wish moms would stick together on this stuff. As moms when we sacrifice time to care for aging parents that have so many medical conditions that need attention – often full time attention or always I call attention, we also sacrifice our relationships and presence with our husbands and children and employers. We also would sacrifice our own health and potentially continue to pass on this dilemma to our children. Can’t we all agree that we are going the best we can?

    Reply
  4. mary khall

    There are so many options in some states for help with Children and young adults at home. I thank God for this. Obviously it is different issue to be in a facility at the end of life and to be placed for 50 years or more as a young person. There are also wonderful out of home programs for Adults with disabilities. I am so grateful that I live where I can get decent services for my children with disabilites who are now adults. It is federal law that all people with disabilites can choose community life and their state has to fund it. However the implementation requires law suits etc. Thank you Lord that my precious Daugher Kate went to heaven from Home. I am also so grateful that my boys are still here with us at Home. Some institutions (large isolating facilities) have done a very poor job. That is terrifying to me. When I go to these places I am outraged that anyone could be allowed to live this way. It is indeed a complicated issue when families feel they cannot do the care anymore and they do not get the help they need. Our systems must step up to value these individuals and serve them appropriately. Love you dear Jane and know what you have done for your dear Mother and continue to do. She is never left alone in the system and you are an excellent advocate for Her and others. God Bless you Dear Cousin. Mary K Hall. Mother of three severely disabled individuals and advocate for community life for people with disabilities.

    Reply
    1. janestory Post author

      I notice you said ” In some states” and that inherently means in other states there may be few options. And in the case of an elderly person there is ONE OPTION, MEDICAID or private pay.Age is not considered a disability. It is simply something we must deal wtih. Again, my point was ” don’t judge another person’s sacrific.”. Period. And don’t make blanket statements. Period.

      Reply

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