What Not to Say When Someone’s Relative Is Going Into Long Term Care

Public Domain-Images of Aging by Administratino on Aging (AOA)

Public Domain-Images of Aging by Administratino on Aging (AOA)

I haven’t accumulated a lot of material riches in my life. One area, though, where there have been substantial deposits into my account, has been that of the learning amassed from some very difficult and painful experiences. I expect this account to keep on growing and earning interest with time, because I want to keep on growing and learning till the end of my life.  I know that life will bring more challenges to handle.  That is the way of the world, but I hope what I learn can continue to help me be more sensitive and more responsive to others who are moving through struggles of their own.

One of the big deposits in my learning bank account, has been a valuable one that I draw from often in my personal and professional interactions. I have learned over time, though experience and through my astonishment at times over the insensitivity of others, what not to say to other people.

In the past I have written articles and posts on Twitter and Facebook about what not to say to those who are grieving and who have lost a loved one. A couple of examples of unhelpful things people say are, “He is better off”, or ” Don’t be sad because she is no longer suffering”, or “You are young. You will find somebody else”, or “Thank goodness you have three other children who are still living”, or “I know exactly how you feel”. These are not helpful things to say to someone in grief.

During my long career in adoption work, and as an adoptive parent, there were also many misspeaks by well-meaning, but ignorant folks. Most adoptive families have heard such comments (often in front of the kids) as, “Too bad you couldn’t have any of your own!”, or “Which ones are your own?”, or “What a wonderful thing you have done”, or “Why didn’t his birth mother want him?”, or “How much did she cost?”.

Now that my husband and I are doing an intensive search in our area for a long term care facility for his mother, I have been hearing from others in the past days who are aware of our situation.

My mother-in-law suffers from dementia which has been advancing lately. We moved her out of house, into an apartment in Pennsylvania where she had lived all of her life, then into an assisted living there. For the past 2.5 years she has resided in a dementia care program of an assisted living facility just a few miles from our home. The care she has received has been very good and we wish she could remain there, but Connecticut does not cover such facilities under Medicaid. She is nearly out of funds.  This means that we must find an acceptable long term care facility nearby, but they all seem to have waiting lists now. Medicaid won’t approve the application until she is actually placed in a facility. Meanwhile her assets need to be down to a very small amount in order for her to be approved for Medicaid funding. If she is placed immediately, her assets will be down to zero in no time flat because the cost of a long term care facility is more than double what her care costs are now.  The facilities are more inclined to accept somebody with some money left since the State is so backlogged with applications and the facility might possibly not receive approval (or reinbursement for care) for a good year or longer. The facilities on whose waiting lists we have put her (with extensive applications needed for each one) want proof that she has a valid pending application for Medicaid. The Catch 22 is that she is still a little over-asset and is not yet physically in a facility, so they closed the application and it has to be resubmitted with the extensive documentation.

So, we are getting increasingly more frustrated and scrambling more to figure out a plan.

Enter the well-meaning people who have said or written to me in the past week or two. I keep hearing things like, “I would never place my mother in a nursing home.”, and “Surely she deserves better than that”, and “My father would never want to go into a home”, and “Why can’t you just care for her in your home?”.

These comments are now safely tucked away in my account of what not to say, and added to the learning to be used in the future.

We love my mother-in-law, who was a sweet person and was always extemely concerned about her sons and the rest of her family. She is no longer this person.  She has mostly lost the ability to walk and is fearful of standing at all. She speaks mostly in word-salad and doesn’t make sense the majority of the time. Though she recognizes my husband and me, she doesn’t recognize others who care for her every day. She doesn’t know where she is or remember the dining room where she goes three times a day.  She is highly anxious and often shrieks and cries. She is completely incontinent now. She does still eat by herself, but chokes often, and she can’t dress or bathe herself. She needs a calm, quiet environment and needs to be reassured regularly, with someone sitting with her as much as possible in order to help keep her calm.   Visiting her is getting harder and harder emotionally, but of course, we do it as often as possible. It is near impossible not to be heartbroken remembering how someone we love used to be and is no longer. It’s hard when we reach a certain age and begin to see what could possibly happen to us, though of course we all pray it won’t.

In addition to all of this, we have a young daughter and granddaughter already residing with us, and stress from other quarters (who doesn’t?).

I work from a home office and have been an in-person and long-distance caregiver for multiple family members, starting in my 30′s many years ago.  Maybe to some, these seem like rationalizations, but the well-meaners don’t walk in our shoes and we know that there is no way we could, or even should consider having my mother-in-law live with us in our home.

So, please, if you know someone going through this, or any other difficult life change/loss, please think before you speak. Please don’t insert your own judgments and opinions into the mix unless asked. Please be there to listen, to validate, to console, to help if you have a concrete way to help. Just don’t assume that what you think is right or is the only way. Be aware that what you say may be hurtful and may add to the stress someone is already feeling.

15 thoughts on “What Not to Say When Someone’s Relative Is Going Into Long Term Care

  1. Iris just read ur post about what not to say,and concerning ur mother in law. I’ve had those words said to me after my mother passed away. I could just scream when cpeople say “She’s not in pain anymore.”I can appreciate how.u must b feeling I’m here for u. Diane

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  2. and this post came at the right time. My best friend lost her father tonight & I rushed to be by her side. Thank God I didn’t mess up & say any of the things you warned about. i was brief to say ” I wished I would be the age of 90 (like him) & still be able to do the things he did. He lived a good life.” was that okay?
    Perhaps I need assurance. I am not very good in words in sad situations…
    Thanks Iris :)
    Dania

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    • Dania, I am sorry about your friend’s father. As for assurance, I can’t imagine you saying anything other than the most kind, supportive things to anyone. That is who you are! I am sure your friend appreciates your support and really, when we are at a loss for the right words in sad situations, just giving a hug and being ready to listen (a skill you have an abundance of as a person and as a professional) is usually enough for grieving people. Just acknowledge their sadness and grief and if you can’t think of something to say that you feel confident in, then you don’t need to say anything.

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  3. Well, said, Iris. And something that needs to be said. Thank you for writing this thoughtful article. As an elder care manager for many years, I too, have seen many situations where the safest, best choice is a memory care unit for a person with dementia who requires 24/7 care. People who say they would never put their loved one in a dementia unit have no idea. Particularly, they don’t understand how dangerous a home can be for a demented person who is fully mobile. And they don’t understand that it can be similar to caring for a toddler – some people cannot be left alone under any circumstances – and may be much more challenging at night. It’s difficult to do these things, but in some cases the decision is simply crystal clear – and a memory care unit is the kindest, safest place for a person who is so at risk.

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    • Laura, I am so glad you read my post and appreciate it. Thank you. You make very good points. I have seen so many people with various types of dementia who wander and who endanger themselves and others. Fortunately my mother-in-law is not a wanderer and doesn’t really walk much now, but up until recently, though she didn’t wander, she would become impatient after her meals if nobody came to help her go back to her room and she would take off on her own and would often fall. I think that as adult kids and caregivers who love the person involved, we must sometimes make tough decisions in that person’s best interests and must also take care of ourselves. Sometimes those decisions are not understood by everyone or popular but we must trust our instincts, just as we must do as parents of young kids.

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  4. This blog is right on point. As caregivers, we can do so much. We have to do what is best for our loved ones as well as ourselves. Some people really don’t think before they speak or just don’t know any better. May God continue to grant you peace, comfort, and strength.

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  5. What a great message… and a very necessary one. Who are we to judge anyone anyway?! Yes, for the most part people are well-intentioned if ignorant, but mostly just thoughtless/unthinking. I hope that your message gets them to think a little more before they speak. There will be many more of us walking in your footsteps as baby boomers face your situation in droves. thanks for sharing your story, and may you find the peace within knowing that what you are doing and how you are handling your life your are doing with love, respect and compassion.

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  6. Omg,I’m so sorry Iris..my own comment I am ashamed of.long before I started working for my present employer of now ten years I was selfemployed,three of my lucrative contracts where with nursing home owners.I spent countless hours working in there various homes.During those hours I met so many residents whom I felt so badly for,I would actually leave wishing I could take people home with me.I pray that your able to find a place that she’s happy with,this is going to be hard for you and your husband yes,but for more difficult for his mom to cope with,frightful actually.your a wonderful person with a tremendous heart who has gone through some of the most devestating events.
    A very strong women you are! Your husband is indeed a very lucky soul to have you at his side.please forgive my stupid comment & my prayers are with you,that you may find peace & a happy loving home for your mother in-law

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  7. I read this to Bob. We are following in your shoes. Thanks . You could not have said it better. Nobody really understands other people’s situations unless they have walked there themselves.

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