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The (not-so-hidden) costs of caregiving

June 30, 2016

About the Author

photo of Leo Newhouse, LICSW

Leo Newhouse, LICSW, Contributor

Leo Newhouse, LICSW, is a Senior Social Worker in Neurology at Beth Israel Deaconess Medical Center (BIDMC). In this capacity, he works with patients and families coping with life-limiting illness, aging, and loss. In his spare … See Full Bio
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July 5, 2016

My heart goes out to you Alabama native. I cared for both my husband and mother at the same time. My husband passed and I am caring for my mother still at age 95 with dementia. She is now living in a long term care, but I am there to make sure she is being taken well care of. My two sisters live far so I have always been her caregiver. I do find it a privilege as Nancy said, my loving mother would do the same for me. Best wishes and best of luck to you Alabama. God bless!

July 4, 2016

Here’s another take to spiral one into depression. When I was in my dark hours, I visited my spouse at his workplace (an academic) and I shared with him (a workaholic) my thoughts: “You know, darling, if something happened to you (he has a family history of heart disease that killed both grandfathers), the children and I would come in here, pack up your office, and look after you at home. you might get visitors for a month from work, but soon, your office space would be taken by someone else, and work would go on…” His reply: “Yes darling, and hopefully, if the same happened to you, I’d be making enough money to pay for a carer for you…” Can you imagine how I felt at that point, and how this very ‘statement’ precipitated me into the darkest night of my own soul, from which I was left to claw my own way back because there was no way he would step back from his work to look after his wife…I commend and deeply bless all of you who have made the ultimate sacrifice of one human being to another, in the name of love…Your pain and your suffering is not wasted on our human race. Your gift to our world priceless. Thank you from the bottom of my heart, for doing something not everyone has the strength, empathy or resolve to do… May we as a society find countless ways to support you. I, for one, am now moving into mental health practice, as a ‘survivor’, to create a new mid-life path that might make a difference in our world, because I don’t think anyone (on this planet of billions) should have to be abandoned by those closest and dearest… In sickness and in health… We give what we hope we will also get…That’s not bargaining…That’s just human decency…. Whatever your spiritual lens of life…. Thank you”!!!

July 5, 2016

Well spoken, I agree.

July 6, 2016

Agree with all you felt.. Perhaps it is good you are learning of his level of commitment now while you are able to craft your life and to some extent,death, in a way that honors your wants and needs. Best to you.

July 4, 2016

The Well Spouse Association provides peer support to those caring for a chronically ill/disabled spouse or partner. We GET it, because we are all current or former spousal caregivers. Most of our members are 40 to 70, and trying to balance work, children, with a serious illness. It is nice to finally see a study that comes close to “telling it like it is”. When you become a caregiver to your former partner, there are a boatload of life changes to deal with, and basically, no help. Those whose spouses need full-time care and are on disability, usually don’t qualify for any social services due to having some income. There are many tragedies waiting to happen with sick people left to their own devices while the caregiver is at work to keep a roof over their heads and food on the table.

July 4, 2016

I recently completed fourteen years of caregiving for both parents, one with alzheimers. I cannot stress how wearing it can be going it alone. Although they had two other daughters who were well able to contribute, they selfishly choose to leave the complete burden on me. Additionally, to escape criticism, they circulated rumors that I was not allowing them to help or visit and that I was stealing money, none of which were true. Family members need to remember that caregiving is an opportunity to repay parents for all of the care and concern they have given their children, not a time for petty games and quarrels. My parents deserved better from the daughters they raised. I have no regrets for having assisted them in their time of need. It was a privilege to have such exemplary parents and I miss them very much.

July 4, 2016

It’s easy to say “take care of yourself, go to the gym,” etc. but the reality for many caregivers is there is no time, no energy, no helpers, and no extra money.

Many times the caregiver is a spouse who has health issues of their own. Often there is severe financial stress.

I think most people can figure out these platitude-type suggestions on their own. What is needed is more social programs that provide real help.

Sofia Herrera
July 4, 2016

Very well said. Succint and to the point.

Sr. Geraldine Finan,SH (Gerry)
July 4, 2016

As a nurse I speak with many caregivers who are overwhelmed. I find one resource for them that helps is a listening other. When trust is established,encouraging them to put their loved ones’ needs in order and supporting while is it in process ,especially the practical issues of their passing. Also it happens those who are dying need permission to die because they are more concerned about leaving their caregivers without their presence and tangible love.

July 4, 2016

Faith, you are so on point. Thank you for your notes. Me and my two sisters are in that anticipatory grief stage as we are all home while my mom has been hospitalized, sedated, and on a ventilator after two brain bleeds. We are in a sort of malaise. Having met with a palliative care team, we know what’s coming, but today, the Fourth of July, we sit at mom’s, frozen, watching tele afraid to go to the hospital for the inevitable next steps.

Faith Teeple
July 4, 2016

Caregivers of critically ill loved ones also suffer from “anticipatory grief.” This is another kind of depression which morphs and worsens, I think, when the loved one actually dies…..recognition of this kind of depression barely exists.
We all know what we should do to help ourselves as caretakers. However, what caregivers also need is recognition and acceptance that depression in such circumstances is 100% understandable and they should not be made to feel guilty for not helping themselves more. We are so afraid of “death” in America that friends and family often distance themselves from the caretaker in subtle ways, either out of fear or not knowing how to “be there” for a caretaker….so often a caretaker is a very lonely person who keeps innermost thoughts and feelings to oneself instead of finding needed emotional support.

Marcia Slatkin
July 4, 2016

I cared for my mother, an Alzheimer’s patient with moderately severe disability, for four years ten years ago. I was compensated by her saving’s account ( $3000/ month), which allowed her to go to a senior Day-Care center in the area ( Suffolk County, NY) daily, and helped me financially. I had in youth had a difficult relationship with her, and miraculously found that these years
where she “forgot” to be critical of me, and I was in control, allowed ME to heal.

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