I have not accumulated much material wealth in my life. One area, however, where there have been substantial deposits to my account, has been the accumulated learning from some very difficult and painful experiences. I hope this account continues to grow and generate interest over time, because I want to continue growing and learning until the end of my life. I know that life will bring more challenges to face. That is the way of the world, but I hope that what I learn can continue to help me become more sensitive and more receptive to others who are going through their own struggles.

One of the large deposits in my learning bank account, it has been a valuable one that I draw on often in my personal and professional interactions. I have learned over time, through experience and through my sometimes amazement at the callousness of others, what not to tell 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 have lost a loved one. A couple of examples of useless things people say are: “He is better”, or “Don’t be sad because she doesn’t suffer anymore”, or “You are young. You will find someone else” or “Thank God. You have three others. children still living, “or” I know exactly how you feel. ” These are not useful things to say to someone who is grieving.

During my long career in adoption work, and as an adoptive parent, there were also many well-meaning but ignorant people who said insensitive things. Most adoptive families have heard comments (often in front of children) such as “Too bad you couldn’t have any of your own!”, “What are yours?”, Or “What a wonderful thing you have!” . done, “or” Why didn’t your birth mother want you? “, or” How much did it cost? “

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

My mother-in-law suffers from dementia that has been progressing lately. We moved her from our home, to an apartment in Pennsylvania where she had lived all her life, and then to an assisted living there. For the past two and a half years, she has lived in a dementia care program at an assisted living facility just a few miles from our home. The care you have received has been very good and we wish you could stay there, but Connecticut does not cover such facilities under Medicaid. She is almost without funds. This means we have to find an acceptable long-term care facility nearby, but they all seem to have waiting lists now. Medicaid will not approve the application until you are admitted to a facility. In the meantime, your assets must be reduced to a very small amount for you to be approved for Medicaid funding. If you put it in right away, your assets will be reduced to zero in no time because the cost of a long-term care facility is more than double what your costs of care are now. Facilities are more inclined to accept someone with some money, as the state is way behind with applications and the facility may not be approved (or reimbursed for care) for a good year or more. The facilities whose waiting lists we have placed you on (with extensive applications required for each) want proof that you have a valid pending application for Medicaid. Catch 22 is that you still have a bit of excess assets and are not yet physically in a facility so they closed the application and it needs to be resubmitted with the extensive documentation.

Therefore, we feel more and more frustrated and struggling more to find a plan.

Check out the sometimes clueless people who have told or written to me in recent weeks. I keep hearing things like, “I would never put my mother in a nursing home”, and “Surely she deserves better than that”, and “My father would never want to go to a house” and “Why can’t I?” Do you care about her at home? “

These comments are now safely stored in my narrative of what not to say and add to the learning that will be used in the future.

We love my mother-in-law who was a sweet person and always cared a lot for her children and the rest of her family. She is no longer this person. He has almost always lost the ability to walk and is afraid to stand. He speaks mostly in the form of a word salad and makes no sense most of the time. Although she recognizes my husband and me, she does not recognize other people who take care of her every day. He does not know where he is nor does he remember the dining room he goes to three times a day. She is very anxious and often screams and cries. You now have total incontinence. She still eats alone, but chokes frequently and cannot dress or bathe. She needs a calm and quiet environment and needs to be reassured regularly, with someone sitting with her as much as possible to help her stay calm. Visiting her is increasingly difficult emotionally, but of course, we do it as often as possible. It’s almost impossible not to be heartbroken when remembering how it used to be and is no longer someone we love. It is difficult when we reach a certain age and begin to see what could happen to us, although of course we all pray that it does not happen.

In addition to all this, we have a young daughter and a granddaughter who already reside with us, and the stress of other sectors (who does not?).

I work from a home office and have been an in-person and long-distance caregiver for various family members, beginning in my 30s many years ago. This may seem like a rationalization to some, but the “good bad guys” don’t put themselves in our shoes and we know there is no way we can, or even should, consider my mother-in-law living with us in our home. home.

So please, if you know someone who is going through this, or any other difficult change or loss of life, please think before you speak. Please do not insert your own judgments and opinions into the mix unless asked to do so. Be there to listen, validate, comfort, help if you have a concrete way to help. Just don’t assume that what you think is correct or the only way. Be aware that what you are saying can be hurtful and can add to the stress someone is already feeling.

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