I am my wife’s caregiver

January

30

1 comments

I am my wife’s caretaker. Married over 25 years it wasn’t supposed to turn out this way. You work hard, save money, put kids through school and finally you’re supposed to enjoy life. Somehow the stars did not line up that way for us.

I still remember that February day when we met with the genetics team for the results of a gene assay. Positive for Huntington’s disease. There must be a mistake, there’s no history in her family of Huntington’s. Described by some as Alzheimer’s, Parkinson’s and Lou Gehrig’s disease at the same time, Huntington’s is a genetically transmitted disease where the brain slowly destroys itself…not over weeks or months but years. There is no cure. It is a mathematical certainty that she will slowly disappear.

I do everything…pay the bills, care for the house, get the groceries, see to her medical needs including appointments, getting medications. I try to monitor how spent I am so I don’t self-destruct from fatigue otherwise there will be no one to care for her. Don’t even mention nursing homes… they all suck. I’m probably in better shape than men half my age, but even someone in the best shape can’t carry a back breaking load forever.

I read stories on social media of men who have bailed, left the marriage, found a new life…sign the divorce papers and walk away. Have to admit while reading their stories my mind imagined what it would be like… in an instant no more caretaking! But just as quickly as it entered my mind it is gone. Why stay? Somehow being in this battle feels right. I tell people “Huntington’s is a killer and it also kills the one with the disease”, meaning it is killing the caretaker and the one with the disease. People looked shocked when I say it. Too bad they don’t like a reality check.


A place to get support

Surprise!! There are no support groups anywhere just for men who are caregivers. So what should I do?  Well, I have decided to lead a Pub event meeting every first and third Monday of each month, open to all men, to support men who are caregivers.

This event is for men who are living with a wife/girlfriend/spouse with a chronic illness, or supporting a friend or relative an illness that is not expected to improve over time. It could be physical, mental, emotional, psychiatric or all of the above. When you share your situation with others, they tend to think they know what you are going through. Fact is, they don’t…they are clueless. We tend to rely on those around us for guidance, for opinions on how to handle situations in life we run into. The feedback you get from a disabled spouse is often colored by their own challenges, illness, and pain they are experiencing. Sometimes it feels like you are in a fun house with distorted mirrors!

Men, I am starting this caretakers support group for men caring for a loved one, friend or any person who you are responsible to meet their needs. Is this group for you?

This group is an opportunity to share and be heard by others who “get it” as well as being a person who can support others. It is a drop-in group…there is no contract, no fee just an opportunity to form friendships with other men. It will start out as a twice a month meeting.

I am starting this caretakers support group for men caring for a loved one, friend or any person who you are responsible to meet their needs. Is this group for you?

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Few people really understand the pressures

Consider the following scenarios and see if any of them sound familiar, resonate with you.

  • You and your wife have a special needs child. He takes up a lot of you and your wife’s time and energy. You have season tickets to the ball game…the one thing you can do with some of your friends. Your wife is complaining about the time you are not around to help her. She goes out with her friends as much as you do, but it’s for an hour or two, not the four or five consecutive hours you are away. It’s really straining your marriage.

  • You got a call last night. Your brother had a stroke. He is almost 80 years old and has no funds for any kind of assisted living or nursing home. You are the only one available to help him, which means taking him into your home. He says it’s just for a few weeks until he finds somewhere else but you know once he is with you, you are stuck. Your wife says absolutely not!

  • Your wife has a chronic illness. She relies on you for most everything, at times even her personal care needs. She asks for help…a lot… but her medical team has told you she needs to be doing more on her own. You’ve tried to move in that direction but your wife complains you are not taking care of her. Last time you took her to her medical appointment, her doc asked you why are you continuing to do things for her.

People who are not caretakers offer well-meaning advice but they are clueless as to the reality you and I are living in. They just don’t get it.

The Pub meeting is a place to be heard and to listen. You may have some insight that will turn another man’s life around. The men there will be at different stages of caretaking. I can guarantee you one thing…if one of the men during a meeting says “I know what you’re going through” you can bet it’s the real deal.

Join us every first and third Monday of each month. Click the link below to get more details.


Let us know in the comments below if you can relate to this article. Let’s start a meaningful conversation on this important topic.

  • Hey men. I lived with a disabled woman – my first wife for 19 years who had MS. My Mother suffered from Diabetes – type one – and was caring for her after my father died , and am caring now for my disabled brother. I’m carrying a lot of grief and resentment over all of the caregiver roles I have played and am playing
    I am really pleased that Jeff is creating a space for men like me , who have no spaces of their own to share their caregiver reality. .
    Truth , for the most part , the women are the caregivers. Men get lost and feel to be a man is to just do the caregiving and buck it up. You don’t have to., not in the Whysmen pub. 😊
    Please join Jeff – and please share the link to his event which you can find on our website at – https://thewhysmen.com. The event is listed on the events tab on the homepage.
    After reading the event story if you can relate , please join us. If you know a man who would be interested, please forward the event link to him 🙏

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